Coping with Neurofibromatosis
and Scoliosis
October 1998:
In
October 1998 and during my
annual N.F check-up at my local
hospital, the doctor was not
happy with the way my spine was
looking. He sent me off for an
x-ray of my spine and said he
would see me in 12 mouths. Four
days later mum received a phone
call from the hospital doctor,
he had looked at the x-rays and
was not happy with the results,
and mum was asked to bring me
back to the hospital the next
day.
I remember mum was upset by this
news, I did not know what was
wrong, I felt fine.
When we went into see the doctor
he said that the x-ray results
shown a curvature in my spine,
he was an Orthopaedic Surgeon
and he thought it best if I had
a scan of my spine to see what
was causing the curve. We went
home and waited for the
appointment to come.
23rd December 1998:
Time for
my scan, I thought the scan room
looked pretty cool, lots of
gadgets, all I had to do was lie
down and keep very still for 1
hour (a long time for me to keep
still). I was aloud to take my
own music into be played, I
took? The Smurfs Christmas Hits,
the doctors was laughing at it.
Mum was aloud to come in the
scan room with me; but they
would not let one of my teddies
into the scan room (Adam), due
to the mettle that was inside
him, so the doctor propped him
up at the window to watch me.
Scan over and time to go home.
January
1999:
I was
back at the hospital for my
results. The news was not good.
The scan shown that I had a
number of tumours on my spine
and one was pushing my spine to
one side causing scoliosis. I
was told not to worry that it
was only a small curve, but that
under the circumstance’s I was
to be transferred to Pendlebury
Children’s Hospital.
March
1999:
I went to
Pendlebury Children’s Hospital.
I saw a really nice doctor
called Mr Spillsbury (he was
very funny) he did loads of test
on me and sent me for more
x-rays of my spine. Then he had
a long chat with my parents. It
was decided that I should have a
second scan of my spine before
any decision was made.
May
1999:
Back at the hospital for my
scan, same routine as last time.
Only this time I took my NOW 47
CD with me.
June 1999:
I was
back to see Mr. Spillsbury for
my scan results.
Mr. Spillsbury said that the
scan had confirmed the presence
of numerous tumours at the
lumbar junction extending well
into the sacrum. Has I felt ok
he felt it best that he just
kept an eye on things for now to
make sure things did not go any
worse. I had lots of visits to
hospital during the rest of the
year.
December 1999:
My
brother arranged for me to go to
Lapland, I had always wanted
to
go. My
brother said I had been so brave
that he wrote to When you Wise
upon star and told them all
about how brave I had been and
to ask if they could make my
wish come true and they did. I
had a great day. Thanks goes to
my brother and everyone at Wish
up on a star.
March 2000:
I was
back at the hospital. I still
felt fine, but this time the
news was not good, the doctor
was concerned that in the last
four months my spine had curved
a further 9 degrees. He was very
keen to operate; I was only nine
and did not really understand
what was happening. We were due
to go on holiday and I did not
want to miss it (I was looking
forward to going away). We did
not go away last year due to all
the hospital appointments I had.
Mr. Spillsbury decided that I
could go on holiday and said he
would do the operation when I
came home.
Back home:
A couple
of days later the phone rang, it
was the hospital to say it had
been decided that I should wear
a Boston brace to help support
my spine until the operation was
carried out. Back to the
hospital for a fitting and two
weeks later the brace was ready.
I walked into the room not
knowing what to really expect,
the brace is really hard and
goes around my body. I was told
I would have to wear the brace
23 hours a day and that it would
take about 8 weeks for me to
build up to it. It took me three
days, my doctor was really
pleased with me, my mum, dad and
brother was really proud too.
Holiday time:
I was
really sweaty wearing the brace,
imagine being Spain with temp’
reaching 102 and wearing a
plastic jacket with an under
shirt on too, believe me, I was
hot. I got to take it off when I
went swimming GREAT!
Number of braces:
I am now on my third brace, I
have grown a lot.
The brace is working and keeping
my spine supported and surgery
is now planned for when I am 13.
I know I am going to be in a
brace for a very long time, I
don’t mind if it helps. I have
been told I will have to wear
the brace for at least two years
after surgery too. The following
advice may help you if you have
been told you must wear a brace
too.
Click
here
for help and advice on preparing
to wear a Boston brace.
Am I in pain?
“Yes” Some times I get a lot of
pain in my back and legs I also
get very tired. I cannot bend
down so my brother helps me a
lot with anything I cannot do. I
thought I would look fat in the
brace, but you cannot tell I am
wearing it and it holds my belly
in.
I have just started at a new
school and I was a little
worried about it at first but my
brother attends the same school
and he has
promised
to look after me.
My brother puts my brace on for
me and I really love my brother
he is simply the best.
I won the Child of Achievement
award this year for coping so
well; I had a wonderful day
London when I went to receive my
award.
August
2001:
Getting
some pain in my groin when
walking, and some new lumps have
appeared, one on my foot
and at the back of my ear My mum
made an appointment with our
family doctor who thought I may
have had a viral infection, but
was asked to come back in three
weeks if things were no better.
3 weeks
later:
Lumps are bigger now, so the
doctor sends me off to the
hospital to have them looked at.
Doctor not sure what is going
on, and wants a second opinion.
13th
November 2001:
Back to my local hospital the
nurse tells me that I have lost
weight.
When I go in to see the doctor
he was surprised to know that I
had not seen the Orthopaedic
doctor so he phones him to tell
him the situation and I was
given an appointment for the 7th
January 2002.
14th December 2001:
I
am at the Manchester Children's
Hospital to see my favourite
doctor Mr. Spillsbury, I am off
to x-ray to have my spine
x-rayed. I then go in to see Mr.
Spillsbury he is really nice and
always has a smile on his face.
I mentioned my groin to Mr.
Spillsbury and he had a look at
it. He was not very happy with
my hip, so I have got to have a
bone scan in the January
'02 and MR scan
done of my spine in February 02.
He did have some good news, my
spine had not got any worse
since my last visit, which was
great news: The brace is doing
its job and stopping my spine
from getting any worse. Mr.
Spillsbury is really happy with
the x-rays and gets one of his
doctors to come and have a look
at it. My next stop is to see
Mike, he makes my braces for me
Mike is really nice, I have
grown so I need a new one.
I
have got a new friend to bring
me luck when I go to the
hospital, His name is Scott, and
he was sent to me by my friend
Bill who lives in Scotland. I am
sure I will have lots of luck
off my new in the New Year.
Teddy Nozy belongs to my
brother, he has had this teddy
since he was a baby and he lets
me take Nozy to the hospital for
luck whenever I ask him.
January
2002 and the year ahead:
My year
started by me having to have a
bone scan,
they used
a special scanner called a gamma
camera. I was given a small
amount of special fluid called a
tracer, which will show up my
bones. The tracer contains a
very small amount of radiation,
which the gamma camera can “see”
and builds up a picture of me. I
had to have a small injection to
put the tracer into my blood
stream; they use a special
needle called a butterfly. Mum
put some magic cream on the back
of my hand one hour before, so
the needle did not hurt. I had
to lie very still on the bed; I
did not feel anything when the
pictures were being taken.
I needed to have a scan on my
spine, which was to see if any
of the tumours had grown from
last my previous scan. The
doctor said that I needed a new
body brace, so off to see Mike
for my new brace.
Bad
news:
I
had been getting a lot of
headaches and mentioned them to
my doctor who arranged for me to
have a scan. When I went back
for the results of the scan
The
doctor had some bad news for me.
Unfortunately the scan that I
had done on my neck sawn that I
have a number of tumours in my
neck, he is unsure if this is
what is causing my headaches. He
wants me to see a neurosurgeon
for a second opinion.
Many hospital visits and test
throughout the year, some good
and some not so good.
Going
into 2003:
After
having a bad few months Mum and
dad took me to the teddy factory
in the Trafford centre today;
they bought me a new teddy (a
dog) to bring me luck. He is
really nice and I bought one
too. The one mum and dad bought
me is called Scan and the one I
bought is called Stella. It was
really cool, I helped stuff them
both then I put a little red
heart in them while making a
wish (I cannot tell you my wish
just yet).
July
2003:
I
went for a scan on my spine at
Pendlebury,
The scan is away of taking
pictures of inside my body
without using x-rays. They use a
special magnet that gives
doctors pictures in a more
details.
Any preparation needed for
the scan?
I had to
take anything metallic off and
mum had to remove her jewellery
(that took about 20 minutes),
only joking. You also have to
remove clothes with zips on.
What
happened to me?
I had to
lie inside a scanner (it’s like
a round drum) and keep very
still and I do mean still while
the pictures are being taken.
The scanner makes a loud
“knocking” sound mum wore some
ear protection; I tried to
listen Robbie Williams C.D 2 but
it was difficult to hear.
What
happens next?
Scan over, the doctor came in to
see me but could not tell me the
results he said they have to be
sent to my consultant first.
Result
time:
Bad news. The doctor looks at my
scan and tells me the main
tumour as started to grow and
this is the reason I am getting
so much pain. He turns to my
x-ray, the bend in the spine has
worsened too, only by 9 degrees
but he was not happy by the
results. He goes and gets the
other doctor to come and have a
chat with me. He was concerned
by the fact that the tumour as
started to grow and the fact
that my back as started to
worsen. The doctor asked me if I
was happy with the way my back
was looking and then said he
would operate on my spine if I
wanted him too. I told him I
needed time to think about it, I
was not expecting the decision
to be mine and I am not sure if
I want to be the one to make
decision really.
The doctor arranged for me to
have this special scan done
before I went home and I have
got to have it done again in 6
months. In the meantime I have
got to see a neurosurgeon over
the tumour, which has started to
grow.
August
2003:
I
am back at Wythenshawe hospital
to see the doctor over the
tumours in my neck. I have got
to see a plastic surgeon over
having some of the tumours
removed from my neck.
We had only been home an hour
when the phone rings, it was the
doctor-asking mum to bring me
back to the hospital that
afternoon. They wanted to take
some photos of my neck for the
plastic surgeon.
September 2003:
Today was one of the best days
in my life. Why?. Well, I
thought I was going on one of my
many trips to the hospital this
morning and that mum wanted to
pop a competition entry off at
Granada Studios on the way. Mum
sneakily asked me if I wanted to
go in with her to bring her luck
with the competition(mum knew I
would say "Yes").
The day begun when we got out of
the car and dad said he was just
going to park up while he waited
for us. When we walked into the
building this lady walked up to
mum and shook hands and then
turned to me and said, “you must
be Kirsty, I am Sian Lewis from
the Women’s Own Magazine,
pleased to meet you”. I still
did not know what was going on,
I kept asking mum what was going
on but she would not tell me,
then, in walked a camera crew
who introduced them selves. I am
Caroline Doherty and we are from
GMTV, I was told that I was
going to spend the day on the
Coronation St’ set with Julie
Hesmondhalgh (Haley) and that my
brother Chris had wrote this
lovely letter to the Women’s Own
Magazine to nominate me for the
Child of Courage award. I had a
fantastic day with Julie
Hesmondhalgh, Sian Lewis (from
Woman’s Owen) and the rest of
the crew. It was raining but
that did not spoil my day. I
pulled a pint in the Rovers
Return, great fun, walked down
the street, met some of the cast
members, saw Roy’s café, Haley’s
and Roy’s house, the corner shop
and lots more. It was truly a
fantastic day.
My story has just appeared in
the Women’s Own Magazine (3rd
November 2003) covering my day
on Coronation St’.
A very big thank you goes to
Sian Lewis, Julie Hesmondhalgh,
Caroline Doherty, my brother and
everyone at the Women’s Owen for
making my dream come true “Thank
You” for such a wonderful day.
October 2003:
I had to go and see the plastic
surgeon over the tumours in my
neck, foot and the one on my
chin. He said that if he tried
to remove the tumour from my
chin it would leave a nasty scar
and that it may be better left
alone at the moment.
Unfortunately there are too many
tumours in my neck to try and
remove any of them, I have about
8+ on each side, they are not
too big but you can see them
when I turn my head to the side.
I will see the doctor after
Christmas and if any of them
have grown he may have to
rethink and operate on them.
GMP Young
Citizen of the Year Award:
I have
just won the title of Young
Citizen of the Year for Trafford
run by the Greater Manchester
Police. I was nominated by my
head teacher Miss Lloyd for how
well I cope with my illness and
for the charity work I do. I
will now represent Trafford for
the next twelve months and for
my first job I am going to the
Trafford Family Police carol
service where I have been asked
to say a few words about the
charity Wish Upon A Star.
November 2003:
I went to
see the neurosurgeon (Mr. Thorn)
today; he was really nice and
took the time to explain my scan
results to me. Mr. Thorn pinned
my scan picture up to a light so
that he could show them to me
and point out where the tumours
were.
Mr. Thorn wants me to have a
special spine scan done in,
which will give him a more
detailed picture of my spine. He
also wants to discuss my case
with a Professor before any
decisions are made about
removing the tumours from my
spine. There are too many
tumours on my spine to try and
remove them all so he wants to
make sure that he removes the
correct ones and needs to
discuss this with the Professor.
Date
for scan on my spine:
I have my
scan on the 15th December 2003.
I have been told I will need a
needle this time so mum is going
to put the magic cream on the
back of my hand first so that it
will not hurt.
1st
December 2003:
My first
roll as the young citizen for
Trafford was to attend the
police Carole service and say a
few words about why Wish Upon A
Star is so dear to me and what I
have done to raise money for
this charity. At the end of my
speech there was a collection
for my chosen charity, which
raised over £236,00.
December 2003:
I went to see Dr. Lieberman, he
is a chronic pain specialist and
what a cool guy. He was really
nice and wore a really jazzy
tie, I will have to buy him a
new tie for the next time I see
him. We had a long chat and he
gave me a good checking over.
Dr. Lieberman decided to put me
on a T.E.N.s Machine, which I
have to wear under my brace and
2 lots of cream, which I have to
have rubbed into my side and
onto my foot. A T.E.N’s machine
is a Transcoutaneous Electrical
Nerve Stimulation (T.E.N'S) drug
free method of controlling pain.
It uses tiny electrical impulses
sent through the skin to the
nerves to modify my pain
perception. I think I am coping
very well with it, although it
is a little uncomfortable under
the brace.
January 2004:
I have now received the results
of my scan and unfortunately the
spine has worsened yet again and
one of the tumours has started
to grow. Doctors think it is
time for my operation (I am
really scared), the neurosurgeon
and the orthopedic doctors are
going to have a meeting over
what happens next. In the mean
time I have got to use my T.E.N
‘s machine to help with the
pain. The doctor doesn’t think
the brace is doing me any good
now, but I have worn it 23 hours
a day for over five years and my
back really aches when I don’t
have it on.
I'm very
upset at the moment:
My
Ronnie gran was taken into
hospital on an 999 emergency,
gran phoned us very upset saying
she was hemorrhaging, when we
got to my gran she was in a
mess, we called for an ambulance
which came within minutes. Gran
was in hospital for 2 weeks and
was diagnosed with lung cancer
(we were all very upset by the
news). Gran was only home 2 days
when she was rushed back in
again and again gran was in
hospital for 2 weeks. My gran
came home feeling not very well
and with a lot to think about, I
had to think how could I help my
gran with this dreadful news,
she’s my gran and I love her so
much. My grans just been back in
hospital after having half her
left lung removed (a big
operation for a lady of 76),
gran was on the H.D.U. for a
week and very poorly.
August
2004:
Went to see Mr. Thorn over the
tumours on my spine,
unfortunately the news was not
good, he had a look at my last
lot of scans again and also got
a second opinion, he thinks it
is going to be too dangerous to
touch any of the tumours. There
are too many tumours in around
the spine that he could not
possibly remove them all.
September 2004:
Back to see Mr. Oxborrow he
talks to me over what Mr. Thorn
had said to him and then sends
me off for an x-ray, when I go
back in the room Mr. Oxborrow
tells me my spine has worsened
and that he thinks its going to
continue to worsen. I have been
in a lot of pain and finding it
difficult to do some things. Mr.
Oxborrow tells me he will need
to operate before Christmas and
that the next time he see’s me
will be on my pre op’ check',
I’m not really frightened by the
operation, well, maybe I am just
a little bit (at least I’ll get
some time off school), not
really, I’m told I’ll have a
home tutor and my school has
been really good to me. I’m
going to have my op’ done down
the side of my body so no one
can see the scar.
October
2004:
I had the
operation on my foot, ankle and
chin today at Christie Hospital.
My tumours were removed under a
local anesthesia, this means
that the areas surrounding the
tumours were made numb
(anaesthetized) I did not feel
any pain during the surgery and
I remained awake. I was able to
eat and drink as normal before
surgery. My surgeon tested the
area to make sure that skin
was numb before starting the
surgery. All I could feel was a
little pressure, pulling and
pushing but no sharp needle type
pain. My surgeon told me to tell
her if I felt any pain during
surgery to tell her and she
would give me some more local
anesthetic. It takes about 6
hours for the numb feeling to go
away so I had to be very careful
until the normal feeling
returned. I had 8 stitches in my
foot, 4 in my ankle and 3 put in
my chin. I have got to have the
ones in my chin removed in 7
days and the ones in my foot and
ankle in 14 days. When When I
got home I had a lie down for a
while then my brother took me
out to buy me a get well present
(2 DVD’s)told you I have a great
brother.
Time
for stitches to come out:
Unfortunately when the nurse
went to change the dressing on
my foot she noticed that it was
infected, clean dressing was put
on and I go back in a few days
to have the stitches out. The
stitches in my chin came out ok
and I’m left with a small scar.
Back for stitches out of foot
and ankle and dressing change,
still looking no better, put on
antibiotics going back every
other day for the nurse to look
at it. I’m now on my third lot
of antibiotics and scar has
still not closed, the nurse
tells me it’s going to take a
long time to heal.
December 2004:
Went to see Mr. Thorn at
Pendlebury Children’s Hospital.
He said he wanted to explain
what was happening and what he
had been doing over the past few
weeks.
He
told me that he had recently had
many meetings with other doctors
to discuss the results of my
last lot of scans and that I had
one large tumour on my spine and
many smaller ones and that there
were many abnormalities to the
spine. He explained that if they
tried to remove any of the
tumours that it could cause
paralysis (the risk of this was
high).
The operation on my spine should
not be long now, Mr. Thorn was
very apologetic, saying it was
his fault that the operation had
been held up. But he wanted to
make sure he was doing the right
thing by getting a second
opinion.
January
2005:
I
attend Pendlebury Children’s
Hospital for my Pre-op’ surgery.
I first go for an x-ray of my
spine, many x-rays were taken in
different passions, I then go
back to clinic and wait to see
Pauline (Scoliosis Nurse
Specialist). Pauline has a long
chat with my parents and me and
tells me I may need a blood
transfusion after surgery and
had I thought about having an
Autologous blood donation, which
means I would be my own blood
donor.
Blood
Donation Procedure:
A
blood sample is taken from the
thumb (waaaaa, I have to say
this made me jump and it hurt,
the little Vampire) to check my
iron level. I also have to take
an iron supplement for a few
weeks (3 iron tablets a day)
before I can donate the blood,
which will be done in about 3
weeks time.
My
blood pressure was taken and I
had a lung function test, which
were all good. When I go back to
donate my blood I have got to
have another thumb prick and a
nerve test.
Time for a chat with the
doctor:
My
surgeon takes a look at the
x-rays, takes a pencil and ruler
and
begins
making marks on the x-ray, and
making measurements of the
curvature, he is not happy with
the x-ray results and keeps
saying that they must be wrong.
He
then began to examine my back by
looking at my back while I was
standing and by having me bend
over at the waist (this was very
uncomfortable). He says looking
at the x-ray today things look
worse than last time and that he
may have to put more mettle work
into the spine than he was first
going to. He decides rather than
send me back for more x-rays
now, that on the day of the op’
he will stretch me and see if it
s still the same, it would be
too painful if he did that now.
But he is concerned at how the
x-rays are looking.
How he
hopes to go about the operation:
The
incision will be made down my
side; he will deflate my lungs
and may have to remove a rib in
order to reach the spine. He
will also need to detach the
diaphragm to gain access to the
spine,
remove the disc material from
between the vertebra involved in
the curve. This will increase
the flexibility of the curve and
provide a large surface area for
spinal fusion. Rods all put in
place from the side. He tells me
the spine could go worse doing
it this way. But if it were his
daughter he would want to try
this way first.
Talks
About the risk and
complications:
I will
not go into this too much
because it’s all very scary and
it will not happen. But some of
the risks are; chest infection,
due to drains in the lungs after
surgery, thrombosis (blood
clots) to lungs due to him
deflating the lungs and to the
legs due to not being able to
get out of bed. One leg will
feel cold
and the other warm (this last
for many months). Also because I
have been in a brace for so long
the spine may decide it don’t
like it when they try to
straighten it and goes into
spasm in which cash they have
to stop surgery. Surgery is
going to be made more difficult
because I’m skinny (so my doc’
tells me).
How I
Feel at the moment:
When my
surgeon said that I needed
surgery to correct my curved
spine (scoliosis), going back a
few years ago, I felt a little
scared about having surgery:
however, I am trying to look at
the positive
sides of having my curved spine
straightened. I am trying to
keep a positive attitude about
what I am going to have to go
through and how much better off
I will be later on in life. I
know everything will be ok, I
have family and friends and they
are all very supportive.
February 2005:
Time for me to donate 1 unit of
blood, I’m off to have a thumb
prick done first, I remember
this from last time. I am also
given a white box, which looks,
like a small ice cooler, my bag
of blood will go in to this to
keep it cool.
Back to the clinic to give my
unit of blood. The nurse checked
my blood pressure and
temperature and completed some
necessary paperwork.
I
had to lie on a bed, the EMLA
cream, which my mum had put on
me about an hour earlier, was
removed and a needle put into
the vein for the replacement
fluid, Then the needle used to
collect the blood was inserted,
this one really, really hurt
they went straight through a
vein. The blood is collected in
a donor bag and it took about 30
minutes. After the donation was
complete the needles were
removed and a dressing applied.
I had to rest for about 15
minutes, I was also given a mars
bar and a can of coke to boost
my sugar back up. I had to rest
for the rest of the day.
February 2005:
Went for
my EEG (electroencephalogram) a
nerve conduction test; this only
took a few minutes. I had to lie
on a bed and some wires were put
on my head and some on my feet
(poor nurse having to touch my
feet). The technologist told me
they would be in theatre during
the surgery on the spine to help
the surgeon make sure nerves are
not damaged during the
operation.
Family
care worker:
I also
met Sandra the family care
worker she was really nice.
Sandra shown me round the ward I
will be going on and told mum
they will try and give her a
room or a bed next to me. She
also took me down to the I.C.U
Unit but I did not go in, Sandra
decided it may be a bit scary
for me and I will not remember
being on there anyway. We gave
each other a big hug and she
wished me luck and said she will
come and see me when I am in.
9th
March 2005 the day before my
operation:
To
day I received a very special
award, which is The Diana,
Princess of Wales Memorial
Award. My head Teacher (Mr.
Brooks) and Mr. Ridley nominated
me for the award and this
morning in our school assembly I
was presented with a special
certificate and a lapel pin I
was only in school for a couple
of hours as I am going into
hospital later today.
My First day in hospital:
On the
first day I spoke to the
surgeon, doctors and nurses and
physiotherapist. They were all
very welcoming, I got settled in
and got to know the other
children and mums on my ward.
There was one other girl in the
bay who had had the same
operation, as I was about to
have. They keep the spinal
children separate from the main
ward due to infection. There are
only three children in our bay
at any
one time.
10th
March 2005: The day of
operation:
Mr. Oxborrow (my surgeon), and
his team came to see me very
early and tried to calm me, next
Dylon (the anaesthetist) came
and runs through things with me
(he is really nice and very
funny). My dad turns up next,
(my mum was already with me as
she stayed with me through the
whole night), I had to change
into my operating gown, a nurse
put cream on the backs of my
hands. These two ladies came to
do the nerve impulse test. They
stuck electrodes on my head,
ankles and linked the wires
coming from them to a machine,
which was then linked to a
computer. I then sat on my bed
and had to stay as relaxed as
possible. From the computer she
sent a pulse into my ankles.
It’s a bit like pins and
needles. The computer then
recorded the signal going up my
spine into my brain. This test
is so that during the operation
they can compare my normal
signal to all the signals they
get during the operation. It
means that they can detect if a
nerve is affected. There is
absolutely NO pain involved!!
The wires are left in place for
when I am in theatre.
I was
wheeled down to the operating
room with mum, dad and a nurse.
When we reached the room only
mum and the nurse was allowed in
with me (the room was small),
everything went quickly. I
hardly noticed them putting me
to sleep, as I was talking to my
mum and I had my new teddy.
Operation is stopped:
Mr.
Oxborrow woke me up during the
operation to ask me to move my
toes, apparently there was a
problem with the surgery and he
had to stop, if he would of
continued he could of paralysed
me. I remember him waking me up
on the table; I was not in any
pain even though Mr. Oxborrow
was in the middle of the
surgery. He told me he would
have to get some advice and try
again in a few days. He did not
think I would remember him
waking me up, but I did and told
mum who was just about to brake
the news to me that I would have
to go back to theatre in a few
days time. I was put on H.D.U
(high dependence unit), when I
woke mum and dad was sat next to
me I wasn’t allowed a drink for
a couple of hours and I was
really thirsty. Mr. Oxborrow
came to see me and asked me to
wiggle my toes, I remember I
could not manage to move them,
so he left me alone and said he
would call back and see me again
before he went home. My mouth
was really dry so Mum put water
in my mouth with a swab so it
didn’t dry out. I kept falling
asleep. I was given
anti-sickness medicine but none
of them worked I kept on being
really sick. After a couple of
days I had my chest drain taken
out and when your drains are
taken out all depends on each
individual person. I won’t lie,
it was painful but it was so
quick that it didn’t really
matter. After four days on H.D.U
I was taken back to my ward
while I waited for my second
operation.
Back on
my ward:
I
was still in a lot of pain and
attached to drips and other
machines, I was not allowed to
move or sit up and to be honest
I couldn’t if I tried. It took
five nurse to log roll me when
my bed was being changed. My
next operation was now planed
for the following Thursday. Mr.
Oxborrow told me he would not be
doing the operation this time as
he had to be somewhere else, I
was really upset by this news
and told Mr. Oxborrow that I did
not want anyone else doing the
operation and how I trusted him
and wanted him to do it. Mr.
Oxborrow was really good and
said that he would cancel all
other appointment to be there
for me (how nice was that?). But
I took a turn for the worse and
caught an infection so the
operation was postponed and
planed for the Monday. I felt
really bad that Mr. Oxborrow had
cancelled all his other
appointments and apologised to
him, he told me not to be daft
and to just concentrate on
getting better.
Monday,
Day of second operation:
Mr.
Oxborrow came really early to
see me and took my temperature
(36.8), happy for operation to
go ahead, he says he will see me
later in theatre, about an hour
later I started being unwell, I
was still taken to theatre where
Mr. Oxborrow was waiting for me
he took one look at me and said
he was not happy with the way I
looked and took my temperature,
bad news it was now 37.9, he
said I’m sorry I cannot take the
chance with a temp’ that high
and I was sent back to the ward.
The other parents and kids on
the ward started cheering when
they saw me being wheeled back
and could not believe it. More
antibiotics given to try and get
rid of this infection and my
temp’ was taken every two hours
for the next two days. Mr.
Oxborrow said he wanted it to
stay below 37.4 for 48 hours
before he could go ahead with
the operation. Operation now
planned for Thursday.
I was in
a lot of pain and still being
very sick but I never got the
chance to be down as the nurses
were always around cheering you
up and making you laugh. One
night, we got the nurses to play
the “YES”, “NO” game what a
laugh. A lot of your fellow
patients are having the same
operation so you can help each
other through any
tough
times too. Those friendships you
make are precious.
Thursday time to try again
24th March 2005:
Mr.
Oxborrow calls to see me early
to make sure I was feeling ok
for surgery, The nurses and
doctors were very reassuring
that everything would be ok this
time and my parents were there
for me every step of the way so
I didn't really have too much to
worry about with surgery. After
making sure there is an empty
bed on H.D.U I am prepared for
surgery, cream on back of hand
and electrodes connected to my
head.
Mr. Oxborrow explains he will be
doing the posterior approach
this time, which is done, from
the back of the body. It
involves making a long, straight
incision into my back and moving
aside the back muscles to reveal
my spine. He will then inserts
two titanium rods, holding the
rods in place with wires, hooks,
and screws in various points.
The spine will be repositioned
and held in place with these
mechanisms while the new bone
surface fuses. I will need a
bone graft, which will be taken
from my pelvic bone, this will
help the spinal bones fuse
together in a permanent
position. On my first operation
the approach for my scoliosis
surgery was done through an
incision from the side of the
body. This technique is better
for severe curves, including
rigid curves in adults, but has
greater surgical risks than
posterior surgery. Time for the
nerve impulse electrodes to be
stuck to my head, this is done
so the doctors can detect if a
nerve is affected during the
operation, which is what
happened on my first operation.
There is absolutely NO pain
involved!! Getting the glue out
of my long hair after is the
worse part about having this
done. A little tip, use nail
varnish to try and remove the
glue when your are feeling up to
having your hair washed, believe
me it helps.
I
remember seeing mum and dad and
Mr Oxborrow looking over me
asking if I was ok. I felt a bit
weird, I wasn’t allowed a drink
for hours and I was really
thirsty. I kept being asked to
wiggle my toes. I was wheeled to
H.D.U after a while the nurse
and my mum put water in mouth
with a swab so it didn’t dry
out. The next day I had an x-ray
machine brought over to me and a
board slid underneath me so they
could take an x-ray. That was a
bit uncomfortable. They removed
the board and put my x-ray up on
a screen in front of me. Mr
Oxborrow said he was really
pleased
at the results and pointed out
where he had to hook over the
top of my rib because he could
not get screws in to hold the
rods. I am then told to rest. I
kept falling asleep. I was given
anti-sickness medicine but none
of them worked I kept on being
really sick, this is only to be
expected after surgery.
Mum said she was off to my ward
to let them know how I was
doing, when mum came back I
could not believe who she had
with her, I thought I was seeing
things, my mum had Danny Young
with her (Warren out of
Corrie'). I was not looking or
feeling my best but it really
made my day seeing Danny. He
stayed for little while chatting
and gave me a little hug. I
wanted to hug him back but I
could not move.
Nicky & Me |
Danny & Me |
Ian, Me & Julie |
H.D.U |
Back on
the ward:
Operation
over and now I start on the road
to recovery.
After a couple of days the
catheter is removed, this just
feel a little uncomfortable but
is not painful. I still had
numerous tubes in me and a chest
drain, as my lung had to be
collapsed whilst they were
performing the operation. I
wasn't allowed to stand for over
a week after surgery, or sit up,
to allow the operation to
settle.
About 7
days after the operation I had
to sit up on the side of the bed
so I could be fitted for my
brace, this was my first time of
sitting up in 3 weeks. I used
this special technique. I rolled
onto my side and then swung my
legs off the side of my bed
while sitting up. It made me
feel sick and dizzy but I was
pleased to be able to do it. I
had to have two nurse’s and my
mum help old me up while Clair
wrapped wet plaster round me and
this other guy smoothed it to
make the mould for the brace.
Unfortunately I started being
sick and had to be given an
injection to try and stop it.
Clair tells me my Brace will be
ready on the 5th April (My
Birthday). The next day I sat in
the chair for a couple of
minutes my nurse stayed by me
and so did my mum, I felt really
dizzy and sick and could only
manage a few minutes before I
had to go back to bed.
The following day I did the
same. I was going to try and
stand up but I didn’t feel
confident enough so I didn’t.
The following day I managed to
stand up.. I walked a couple of
steps. It felt uncomfortable as
all the muscles had to adjust
but I knew as soon as I got up
and about the better I would
get. The day after that I walked
a bit and sat in the chair for a
couple of minutes. By now I was
starting to get the hang of it
and I was gaining more and more
confidence.
5th
April 2005: My 15th BIRTHDAY:
I
received lots of cards and gifts
from family, friends and
hospital staff and I had a large
box of gifts from my friends at
Post pal.
My
friends on the ward made a
surprise party for me and Julie
(Haley out of Corrie’) and Ian
(Julie’s husband) came to see
me, they both sprung onto the
ward singing Happy Birthday,
they looked really funny. While
Julie and Ian were with me the
nurses wheeled in this great big
cake with more gifts from all
the children and staff on the
ward. I could not have candles
on the cake due to the oxygen at
the side of me so Julie took the
cake to the door and put one on
for me so I could blow out the
candle at the door. I had a
really nice day even if I was in
hospital everyone tried to make
it very special for me. Claire
called with my new brace all
wrapped up in a big bow and my
doctors called and sang happy
birthday to me too.
Getting
ready for going home:
A
couple of days before I went
home, I went down to the x-ray
department, to have two standing
x-rays taken. I was wheeled down
in a wheelchair because I could
not stand up very well, I am
still very weak after losing so
much weight and still feeling
very sick.
X-Ray:
Mr.
Oxborrow brought the x-rays to
show me and explained that he
had inserted 2 titanium rods
down either side of my spine and
pins and hooks hold the rods to
the spine and he pointed out in
detail on the x-ray for me. I am
so glad he played with Meccano
when he was younger…ha..ha.. It
looks like he did a good job.
Mr. Oxborrow extracted the sacks
of fluid that everyone has
between each vertebra and then
fused each vertebra together to
make my spine solid; they also
used bone from my pelvis.
Home at
last: 8th April 2005:
I got
to go home but unfortunately
this was very sort lived as I
had to be readmitted the
following day with sickness and
a high temperature.
I
was allowed home again on the
Sunday on some new tablets and
given an appointment to see Mr.
Oxborrow on the Friday.
Friday
and time to see Mr. Oxborrow:
I was
still feeling very unwell and by
the time I reached the hospital
I could hardly stand up I felt
so dizzy and sick, Mr. Oxborrow
saw me straight away and did not
like the look of me and phoned
his medical team to ask them to
have a look at me where I
started being really sick.
I was
kept in hospital:
I was
kept in hospital for more tests
as I had a high temperature and
kept being sick. I had to go
back on the drip so they could
some fluid back into me.
Test,
which were done over the
following weeks:
I had to
have an Ultrasound scan of my
tummy an ultrasound uses sound
waves to build up a picture of
the inside of the body. They are
completely painless. These scans
are usually done in the hospital
X-ray department and you can get
the results very quickly. After
my ultrasound doctors decided
that I should have.
After my ultrasound doctors
decided I should have an
endoscope:
An endoscope is a test
that looks inside the body. The
endoscope is a long flexible
tube that can be swallowed. It
has a camera and light inside
it. I did not have to swallow it
as I was given an anisetic for
it. The doctor took samples
(biopsies) of some tissues
through the endoscope so he
could look at it more closely
under a microscope and look for
this bug that was showing up in
all my blood test.
After the
test I was told I had to take
these two tablets as my stomach
was very inflamed and my food
was not moving across correctly
and just building up.
I had a
brain scan:
The news
was good my doctor said that the
tumour that is on my brain stem
had not really changed from when
I last had a scan, which was
great news.
A PH
Study:
Doctors
decided to give to do a PH
Study, which measures the acid
that refluxes from the stomach
All medication was stopped for
about 24 hours before the test
was scheduled to begin.
A very
thin tube, thinner than a
feeding tube was inserted up my
nostril, until it reached just
above my stomach. It had a very
small probe at the end that
registered any acids that was
refluxed from my stomach. The
nurse asked me to drink some
water as this can makes it
easier for the end of the tube
to travel to the oesophagus.
Inserting the tube does not hurt
but it is really uncomfortable
while they are doing it. It can
take more than one attempt to
insert the tube, which happened
with me. It also made me sneeze,
I also kept retching because it
was tickling the back of my
throat and
made my
eyes water. When the tube had
been inserted, the nurse put
some tape on my cheek to hold it
in place. An x-ray was taken to
make sure that the probe has
been positioned correctly. The
other end of the thin tube is
attached to a small computer (In
my case a small black box) for
24 hours.
Meanwhile
I was given a diary sheet to
complete. On this sheet, which
has to be a running history, you
state the time of each activity
that takes place whilst the
study is being done and when you
are feeling sick or eating and
having a drink. I was so glad
when my 24 hours were up I
really did not like having the
tube up my nostril. I got my
test results back a few days
later and everything was ok.
We are now into June and I am
still in hospital, doctor still
don’t know why I am still being
so sick and losing weight. My
dietitian decides I should have
Polycal in my foods and drinks
as well as the Scandishakes in
the hope I will put some weight
on. If not I will have to have a
nasal gastro tube put in.
Julie (Haley out of Corrie’)
calls to see me and we have a
good laugh, we have been talking
about ghost on the ward and some
of the nurses I have made
friends with have been telling
me some funny stories about
things that have
happened
to them when they have been
working nights. My mum is still
sleeping on a chair next to my
bed and said she will not walk
over the car park late at night,
I wonder why?
Dr. Dixit calls to see me and
says he will call back later to
see how I have been and that he
wants a meeting with me to talk
about how things have been going
this past week.
Later
that afternoon, my mum, Dr.
Dixit, nurse, and me go into the
parents room for a private
meeting, we talk about how
things are going and about me
going home, Dr Dixit mentions
that I should
maybe go
home for the day and come back
to sleep at the hospital for a
day or two but I so much want to
go home and I am meant to be
going to a charity function for
When You Wish Upon A Star on
Friday. I mention this to Dr.
Dixit and told him how important
it was to me, so he agreed I
could go home on the Thursday
for good. But, on the
understanding he could arrange
all the medical care I needed
transferred down to my local
hospital in time otherwise I
would not be able to go home. I
was still very much underweight,
which they were not happy about,
mum told them I would eat better
at home and they agreed to try
this.
I get to
go home, I can’t believe it, it
feels really strange being home
and being able to sleep in my
own bed for the first time in
months.
10th June 2005:
To day I
am off to the Gentlemen’s Night
Out Charity Committee Annual
Presentation, which is being
held at the Hilton Metropole
Hotel Birmingham. My self and
some other children have been
asked to go a long with the Wish
Team to pick up a cheque, which
the committee have kindly
donated to When You Wish Upon A
Star. We all had a great day
with lots of surprises, which I
will tell you more about later.
It was a long day and I was very
tired with only getting out of
hospital yesterday after three
long months but I would not of
missed it for the world.
17th
June 2005:
To
day I am off to Blackpool. The
Wish team have asked me to take
part in a promotional video for
them, which is being filmed in
Blackpool, we went to the Sea
World, Blackpool Zoo, for a
meal, and played on the beach.
You never know when you are
flying away on your holidays or
at a function you may just see
the video we made.
29th June 2005:
Things are going ok I am still
back and to the hospital, I have
started to put some weight on
even thou I am still in a lot of
pain. My Dietatan says the
Scandishakes, which are high in
supplements, protein and
calories are helping me and I
also still have to take Polycal
in my food and drinks. I still
have a long way go as I have
lost 2st in weight but I'll get
there.
September 2005:
I started
back at school today but due to
me having to go to hospital
every week for physiotherapy I
am only in school four days a
week and school send transport
for me, which is really kind of
them.
9th
September 2005:
I was at
Pendlebury Children’s Hospital
seeing Mr. Oxborrow due to the
amount of pain I have been in
and the fact that I am still
having bouts of being very sick.
He thinks that I may have a
infection so blood test were
done, he also arranges for me to
go to the pain clinic in
Sheffield, I am also sent for a
x-ray , which is looking good
apart from a slight kink at the
bottom of the spine, which he is
not too worried about at this
time but which will have to be
kept an eye on. Mr. Oxborrow
also tells me he wants to talk
to Mr. Thorn over the amount of
tumours, which are on my spine
to see if he can think of
anything that can be done.
I was getting side effects
from Tramadol:
Unfortunately Tramadol caused me
some side effects, which was
dizziness, headache, drowsiness,
blurred vision, my sickness was
getting worse, I was advised to
stop taking it. Not everyone
gets side effects from Tramadol,
lots of people get the relief
from pain from them.
November 2005:
I went to
Sheffield Children’s Hospital
today to meet with the pain
management team. The morning
started when mum and me were
picked up from home at around
8.45am by Mark who was our
ambulance driver for the day. We
got to the hospital about
10.45am and the team were
waiting for us, we chatted and
spoke about how things had been
going, Dr Goddard decided to try
a new tablet (Amitriptyline
10mg), he explained that I would
have to build up
the
dosage due to one of the side
effects making you tired and
they can also affect heart
rhythm in very high doses so I
had to go for and E.C.G, which
was over in another hospital, so
back in the ambulance where Mark
took us over for the E.C.G.
What is
an E.C.G ?
ECG
(electrocardiogram) is a test
that measures the electrical
activity of the heart.
I had about 10 self-adhesive
electrodes attached to selected
locations of the skin on my
arms, legs and chest. The test
was completely painless and took
less than five minute to perform
once the leads are in position.
After the test, the electrodes
are removed. The consultant will
review the paper printout of the
E.C.G.
The doctor will phone if it is
not safe for me to take these
new tablets. They think the pain
is going to be difficult to
treat due to the tumours on the
spine.
11th
November 2005:
Today I
had the second part of my Math's
GCSE paper, no more exams until
the 24th November 2005 when I
will take my Science papers.
December 2005:
I went to
Sheffield Children’s Hospital
today, Chris (our ambulance
driver) picked mum and me up
about 7.45am and we got to the
hospital around 10.20am, we went
to wrong hospital first, which
was the fault of the hospital
telling us to go to the adult
hospital. We talked about the
new tablets and then I had to
try some relaxation exercises
and mum had ago at it too, we
both kept laughing. Well, they
do say laughter is the best
medicine.
The
relaxation exercises we did were
called The Laura Mitchell Method
Of Relaxation:
I
am going to be sent a tape so
that I can play it while I lie
down and do the exercise, I have
got to do them twice a day and I
will do a well as my physio’,
which I also still do twice a
day. If anyone would like me to
post this method to them I will
gladly do so. We also spoke
about how when you are pain it
can be like being on a roller
coaster, On a good day we may
get up and do a lot but then not
feel so well and end up having
to rest then get up do too much
again and having to rest again,
it is best to pace your self by
balancing rest and activity so
that the pain is not exacerbated
(made worse) unduly. I am going
to have ago at doing these
relaxation exercises and mum
said she will do them with me.
5th
December 2005:
Today I
found out that I was in the
final eight to be named the
"Pride of Manchester". The
winner will receive £3000.00 for
charity, which is fantastic.
12th
December 2005:
I went to
Lapland with my brother to see
the real Santa in Rovanie,
Finland. We had to be at the
airport for 5am. The flight was
nearly three hours long but the
time passed very quickly as we
had breakfast on the plane and
lots of fun with the celebrities
who joined us on the day. When
we arrived we were transferred
to the Enchanted Forest where
giant bonfires burnt, we rode on
skidoos, snowmobiles and had a
Husky ride and met Rudolph. The
Finnish people were lovely and
very friendly. Later we all sat
in a circle in the forest and
submit to an Arctic Circle
initiation ceremony. This means
being flicked round the face
with the tail of a reindeer and
drinking hot chocolate, all
great fun. Finland only has a
couple of hours day light at
this time of year and it was
already going dusk when we
landed. After lunch each child
met Santa, this was really
emotional as you watched each
child going to receive a gift
from Santa, we later visited
Santa's Village and Santa's Post
Office, where his small helpers
stamp all the children's letters
from all the world and despite
not being very well and having
to see the doctor we had a great
time. The trip was organised by
the when you wish upon a star
team and over 90 children and a
parent were invited, many
television stars came along on
the trip too. When I got home my
legs were really swollen, my mum
elevated them up to try and
reduce the swelling.
14th
December 2005:
I
went for my physio’ to day and
my physio’ was worried that my
legs, hands and tummy were all
very swollen so she said she was
not going to do any physio’ and
that I was to go to A&E and let
them have a look at me. When the
doctor saw me he made sure I did
not have any blood clots in my
legs and was very puzzled as to
why my tummy was so swollen (it
looked a so I had a football up
my jumper), I felt very unwell
too, after chatting it was
suggested I may have done too
much when I was in Lapland or it
could have something to do with
the tablets (Amitriptyline). I
went home and was told to rest
but if got any worse I was come
back.
Mum phoned the pain clinic to
tell them what had happened and
even thou hey had not heard of
this happening before with these
tablets it was suggested that I
come off them, which I did over
a few days.
12th
January 2006:
Today is
the results of who will be named
the Pride of Manchester" after
the public voted for who the
winner would be.
The afternoon started by
everyone meeting at the M.E.N
where we all got to know one
another a little better, drinks
and food were laid on for
everyone to enjoy. After dinner
we all went into the M.E.N
boardroom where Neville
Richardson of the Britannnia
Building Society gave a sort
speech about there involvement
with the Pride of Manchester
after, which Maria McGeoghan,
deputy editor of the M.E.N gave
a sort speech about each
contestant before announcing the
three winners in reveres order.
I could
not believe it when my name was
called as the winner, I was
shaking and very much in shock
everyone in the room were
winners and they had all done
something remarkable, it was
great having the opportunity to
meet so many lovely people. I
was really pleased to have won
so that I could give the
£3000,00 prize over to the When
You Wish Upon A Star team.
January 2006:
Back at Sheffield Children’s
Hospita. We chatted about how
the relaxation exercise’s were
going. I have been asked to try
Nortriptyline 10mg for the pain;
I have to take 2 at night and 1
in the morning this is an
alternatives to Amitriptyline.
Nortriptyline can be used to
treat chronic pain, and
headaches.
14th
January 2006:
I had a
surprise visit from my good
friends Julie and Martha today,
it was great seeing them both
and Martha was just so much fun.
15th January 2006:
Back at Pendlebury on the 27th
January to see how things are
with my spine and Sheffield
Children's on the 8th Feb' '06
and also going back into
hospital on the 28th Feb' '06 to
have three tumours removed from
inside my leg, in the mean time
I have to continue going to the
hospital weekly for physio'.
Pendlebury Hospital:
I went to
see Mr. Neil Oxborrow to day
over the pain in my back, we
chatted for a while and I was
sent for a full x-ray of the
spine, Mr. Oxborrow was happy
with the x-ray but a little
concerned over some other
issues. He sent me to have a
blood test to make sure there is
no infection in my spine.
Mr. Oxborrow also wants me to
have an urgent MRI Scan of my
brain and full spine scan. This
will be done within the next two
to three weeks.
February 2006:
I was at
Sheffield Children's Hospital
today seeing Sue, Sue took mum
and me to this relaxation room
to make a tape but mum went out
because we both kept laughing. I
also saw Dr. John Godard, Dr
Godard wants me to try
Gabapentin 300mg for the pain
and he will call me in a two
weeks to see how I am going with
them.
Time for my M.R.I Scan
I went
for my Brain and full Spine MRI
Scan. An MRI is a way of taking
pictures of the inside of the
body without using x-ray and
gives the picture in more
detail. I had to lie really
still while the pictures were be
taken, my mum came in with me.
The scanner made a really loud
“knocking” sound while it was
taking the pictures but I had
some headphones on listening to
my music so that helped. The
scan took about 50 min’s because
of me having a brain (“Yes” I
have got one, or so I’m told)
and a full spine scan done. The
results will be sent to Mr.
Oxborrow and he will phone me
next week with the results.
20th
February 2006:
Hospital phoned to say they now
want me in on the 1st March to
do the operation on my leg but I
have school exams on the 8th
March and I am back on
antibiotics due to an ear
infection so I have had to tell
them I will have to keep with
the 29th March. I have been told
that I have a perforated
eardrum.
I have had news about the spinal
mattress I should have one very
soon as it was going to be
ordered today.
What is a perforated eardrum?
A perforated eardrum is a hole
or rupture in the eardrum, a
thin membrane that separates the
ear canal and the middle ear. I
have got to see an ENT
specialist and have a hearing
test in May to assess any loss
of hearing.
I now have my spinal mattress
too, it’s a little to early to
say how things are just yet I
have only had it two nights but
I will keep you informed for
anyone thinking of getting one.
March
2006:
Back from the hospital after
having my pre’ op’ check to make
sure I am ok for surgery on my
leg next Wednesday (29th March
’06). I was meant to be going
into hospital on the Wednesday
morning but they have decided to
bring me in the day before as I
am first on the list and at the
moment I have still got this ear
infection and they want to see
how my temperature goes, I may
also need to have an ultrasound
scan doing on my leg and some
blood test doing before surgery.
April
2006:
I
am home from hospital after a
couple of day’s stay, which is
not too bad. I had three tumours
removed from inside my leg in
various places. I have got to go
back to hospital on Wednesday to
have the stitches removed. While
I was in I stayed on the
Starlight Ward my mum stayed
with me, we had our own room,
which had its own shower and
toilet and everyone was really
kind.
The operation took two and
half-hours, my leg is very
painful at the moment and very
heavily bandaged and I have been
told not to do very much for the
next three weeks. I will get the
results when I next see the
doctor in six weeks.
April
2006:
I
went to see Mr. Thorn yesterday,
he wanted to talk over the
spinal scan I had done a few
weeks ago. Mr. Thorn told me
that the scan showed that I have
at least one tumour on every
nerve in and around my spine and
he is not surprised that I am in
a lot of pain from it.
Mr. Thorn mentioned that some of
the tumours look like NF2
tumours and he thinks I may have
NF2 and NF1 but mum mentioned to
him that this was said last year
too and none of the doctors
could really agree and that they
were meant to be doing some test
to make sure, which never got
done and he said he could only
go off what he was looking at. I
will have the spinal scan done
again in 12 months unless the
pain gets any worse as some of
the tumours had grown and this
is what is causing all the pain
in my groin and the tingling in
my fingers. He said they could
try doing an operation now but
the risk of paralysis was high.
So I don’t want to take the risk
May
2006:
I
am attending the hospital
everyday this week. I have been
told that it may be a good idea
if I went back into my back
brace to help support my spine
and that that this may help with
the pain. I go for the fitting
for my new back brace next
Friday.
I do physio’ for at least 30
minutes twice a day as well as
attending hospital weekly for
physio’ (hydro'), my family help
me with my physio’ morning and
night. I also do relaxation
exercises twice a day where I
lie down and listen to a tape
recording lasting about 30 min’
each time. Before I start my
relaxation exercise, I put on
comfortable clothing. Lie down
with the whole of my body
supported. Making myself totally
comfortable and closing my eyes.
The tape recording is tailored
for me and is about me going on
a journey and swimming with
dolphins. This is relaxing at
the time.
I am managing to sleep better
with the spinal mattress, I
still have problems getting
settled but I am not waking up
as much in the night now.
10th
May 2006:
I
was at Sheffield Children’s
Hospital today the appointment
went well and I did some more
relaxation exercise with Sue.
I mentioned to Sue that I kept
getting swollen ankles; she said
I have some fluid retention
(medically known as oedema) more
so in one leg than the other and
that I should mention it to my
doctor so that it could be
investigated more.
What is Oedema?
Oedema is
a build-up of excess fluid in
the body tissues. If the fluid
is in the tissue under the skin
it leads to a puffy, shiny
appearance and a doughy feel.
Most commonly, oedema is seen in
the ankles or legs, as the fluid
is gravity-dependent. Sue
suggested that mum massages my
back, shoulders and legs; this
may also help reduce the
swelling in the ankles.
12th May 2006:
I had to
see my E.N.T doctor, I knew my
ear was still infected as not
only was I in pain with them but
I had to see my GP yesterday and
he put me on some different
ear-drops and antibiotics in the
hope it would clear up the
infection.
The ENT doctor had to vacuum
both ears out before I could
have a hearing test done, which
I passed. He thinks I may have
eczema in my ears.
What is eczema?
Eczema is
a common skin condition that can
cause mild to extreme
irritation. When eczema is mild,
it often causes dry, hot and
itching skin. Eczema causes raw,
broken and cracked skin.
Scratching the irritated skin
can result in oozing or weeping
patches, which are prone to
infection. The condition is not
contagious and may flare up at
anytime.
I
have got to go back in six
months but before if the ears
start weeping again so that they
can be vacuumed out.
I have got
to go back in the back brace and
go for a fitting on the 19th
May, it's not so bad thou, I
only have to wear it when I'm in
a lot of pain and the tablets
have not helped.
19th May
2006:
I went for
the fitting for my new back
brace, to make the mould for the
brace I was wrapped in plaster
of paris bandages, when this
dried (only a few min’s) the
mould was cut away from me. This
procedure is messy but does not
hurt. I was given a choice of
colour and I was going for a
really bright colour but then
decided I best stick with white.
The brace will be made from a
solid plastic going all the way
up my back and will be fastened
from the front with soft straps.
I will also need to wear a soft
cotton vest/top, to stop the
brace rubbing and keep me
comfortable. I have been getting
a lot of pain, especially in my
legs, back and groin and it’s
hoped the brace may help with
the pain.
Most children with scoliosis
have mild curves — less than 20
degrees and probably won’t need
a brace or surgery. Periodic
check-ups are needed; to be sure
the curve doesn’t progress.
Children who are still growing
need check-ups every three to
six months to see if there have
been any changes in the
curvature of their spine.
Wearing a brace won't cure
scoliosis, or even improve the
curve, but it usually prevents
further progression of the
curve.
A
brace isn't effective unless a
child wears it as prescribed.
The brace will feel
uncomfortable and awkward at
first. After a couple of weeks,
however, wearing a brace begins
to feel normal. Your child will
need help building a positive
attitude about wearing the brace
and maintaining a healthy body
image.
9th June 2006:
I have been
out of hospital one year today
and it feels great even if I am
still going to hospital every
week one year on.
I
went for a dry land physio’
today my new physio’ is called
Mark and after doing my physio’
he decided it would be a good
idea if I was to see an
Occupational Therapists.
What do Occupational
therapists do?
Occupational
therapists work with people who
have a physical disability; they
help people who have
difficulties with practical
everyday tasks. The aim of
occupational therapy is to
enable you to live as
independently as possible - at
home, or in employment and
give advise on
disability equipment, they are
going to give me some equipment
to help me put my socks and
shoes on and just look at things
that will help me be more
independent really.
Mark also found a problem with
my foot (I have fallen a few
times) and he wants me to be
measured for a Foot brace.
16th
June 2006:
Today was my school Prom and I
had a brilliant time. The
afternoon started by me having
my hair and make-up done by
Gillian (Gillian does the
make-up for the Corrie' stars).
I decided I wanted to be
different from the norm' and go
to my Prom in a open army Jeep
so our friend Lee took me in his
Jeep, which is from the 1940's,
everyone was waving as we went
by.
23rd
June 2006:
I
received my new back brace and
it was just as well as mum and I
decided we would go shopping for
some new clothes for our
holidays, unfortunately on the
way the bus, which we were
travelling on was involved in an
accident. The bus driver braked
hard and we were slung forward
with some force resulting in mum
hitting her head, shoulder and
injuring her neck and top of
spine. I suffered injury to my
neck and spine too.
Both mum and I was in so much
pain we had to go to hospital
where the nurse looked us both
over and told mum she had lots
of inflammation around her neck,
we were given pain killing
tablets. The next the thing I
remember was we were both
immediately taken into resus and
made to lie flat on a bed and
the doctor put us both into a
neck brace.
We
had to stay like this until
x-rays were taken. We had both
got whiplash and mum had a badly
bruised shoulder too and given
tablets to help take the
inflammation down in her neck.
We both keep applying heat to
the neck to try and help to
relieve the inflammation but the
pain is still pretty bad at the
moment.
18th
July 2006: Back Home:
Our trip
to Florida started by a very
pleasant flight our pilot was
Mark Guest who I got to meet
when we arrived at Orlando
Airport.
Swimming with the Dolphins in
Florida was an ultimate dream of
mine and it came true after the
when you wish upon a star team
granted my wish. The experience
was amazing and the rest of my
family enjoyed it too! This was
a life changing experience that
my family and I will never
forget. To swim alongside these
magical creatures and to receive
a kiss from Roxy (our Dolphin)
was better than all the
medicine.
We were told that the dolphins
were free to swim away from us
anytime they wanted to and
weren't forced to do anything
they didn't want to do. Each of
us got to kiss Roxy and our
photo's were taken doing so. We
also got to rub the dolphin
down, we were asked to hold our
hands out with palm up and the
dolphin swam right up to us, I
sent the dolphin out to the
middle of the water, and also
got splashed by the dolphin as
she swam past waving her fin! We
then swam out to the middle of
the lagoon, I went with my
brother and mum and dad went
next. Then each of us in turn
held onto the dolphin while she
swam back to the shore, which
was a great experience. After
our 30 minutes swim with the
dolphins.
We all got a hug of Roxy, feed
her fish and tickled her belly
while she lade on her back.
Sadly our 30 minutes in the
water were soon up and we all
waved goodbye to Roxy, who then
lay on her back and waved back,
splashing us all one last time.
20th July 2006:
I am
undergoing test at the moment to
see if I have both NF1 and NF2
the blood test will take three
months but I had my brain scan
yesterday, the doctor had
problems getting the needle in
my veins but managed in the end.
I should receive the results in
the next week a so.
27th
July 2006:
Went to Sheffield Children’s to
see Susanne Davis today we
chatted for about three hours
and I was given a V.TENS PLUS to
use for the pain and my
Gabapentin was increased. I have
been asked not to use the TENS
until I have spoken with Mr
Oxborrow tomorrow to make sure
it will be safe to put near the
tumours on my spine.
How
does TENS work?
Small pads are placed on or near
the area of your pain and when
turned on you will feel a
soothing pulse that is sent via
the pads through the skin and
along your nerve fibres. And the
level of the pulses are
controlled by you the user at
all times, which hopefully will
suppress the pain signals to the
brain. TENS also encourages the
body to produce higher levels of
its own natural pain killing
chemicals called Endorphins and
Encephalins. Only use a TEN’s on
medical advice as they are not
suitable for everyone.
July
2006:
Went to Pendlebury Children’s
Hospital for a check-up on my
spine. I saw Mr. Oxborrow who
sent me for an x-ray I told him
that I was in a lot of pain with
my back and unfortunately he
told me that my back had gone
worse and that some new tumours
had also grown on the spine. He
mentioned further surgery in
which he would place rods all
the way to the top of my spine
but I am not keen for him to do
this at the moment as there are
too many risk involved and at
the end of the day he was not
sure himself if it would make
any difference at this stage, he
wants me to have a bone scan and
he is going to have a chat with
the neurosurgeon to see what
step they should take next.
I
asked Mr. Oxborrow about the
TENS and he was unsure if it
would be safe for me to use so I
have now got to talk with Mr.
Thorn who is the neurosurgeon.
If you have your Ears cleaned
out at the hospital:
Before
starting treatment with
eardrops, you’ll probably have
your ear cleaned out by a
specialist doctor. The cleaning
will get rid of the bits of skin
and pus that was blocking your
ears so that the eardrops can
get through to the infection.
The main symptoms of an ear
infection with discharge are:
You may get symptoms in one or
both of your ears. You might
have non-stop ear discharge, or
your symptoms may come and go.
Then your doctor will want to
examine your ear. He or she will
shine a light into your ear and
look down an instrument called
an otoscope. This is to see
whether your eardrum has a hole
in it. Some doctors use a
microscope to take a better
look.
Your doctor will also ask you
questions about your symptoms
and how long they have been
going on. This will help him or
her to work out whether you have
a long-term (chronic) infection
or a short-term (acute)
infection.
G.C.S.E Results:
I
received my results this week,
my family say I did really well
and are really proud of me. You
can see my marks if you go on my
press cutting link. I took 15
and managed to gain 9 at A-C
grade and my other 6 were still
a pass but below a C. I am
enrolling on a Performing Arts
course at college, which will
take me three years to complete.
So you never know I may make my
dream and become an actor on
Corrie' one day.
1st September 2006 Brain Scan
Results:
Mum got a
call from the doctor at
Pendlebury Children's Hospital
to day to say the results of the
brain scan were good and nothing
to worry about, which was great
news and he also told my mum
that it was safe for me to use
the V Plus T.E.N’s machine.
NF2 Blood Test You may remember
I mentioned that my doctors at
Pendlebury Children's Hospital
were concerned that I may have
NF1 and NF2 (very rare if I do
have both) due to how some of
the tumours look and the nerves
they have grown on, well the
blood test I had for this went
wrong so unfortunately I have
got to have it done again on
Monday and will now have to wait
until December before I get the
results as it takes three months
for this test to come back.
September 2006:
I
have been
going to see Stuart (one of the
E.N.T Dr's) every week since my
last update and after having ear
swabs done things are still no
better with regards the ear
infection so Stuart wants me to
see this other doctor who I see
next week (Tuesday). My ears are
really bad at the moment so I'm
not sure what will happen.
Marc my physio' measured me for
my foot brace today and that
should be with me in the next
week. I am not sure what it is
like yet only that part of it
will go under my foot and in my
shoe and the other part will go
up my leg with Velcro straps
around the leg.
Foot Drop:
Drop foot
is not a disease but a symptom
of an underlying problem.
Depending on the cause, drop
foot may be temporary or
permanent when I last saw my
spine specialist he mentioned
that the cause of my drop foot
would be due to how the tumours
are pressing on my spine and he
was going to talk to Mr Thorn
over this new problem.
27th September 2006:
I have been
going back and to the hospital
with this ear infection that as
still not cleared up.
Unfortunately I have now got a
perforated eardrum at what the
doctor said was the seven
o’clock point, a perforated
eardrum would normally heal by
itself, although sometimes
surgery is required. The doctor
wants to see me again in a few
months and if the ear is still
perforated, an operation to
repair the eardrum called a
myringoplasty will be performed.
If
you have a perforated eardrum,
you may get the following
symptoms in the affected ear:
A
perforation or rupture in the
eardrum (in other words a hole
in the thin layer of tissue
which separates the external ear
canal from the middle ear).
Physio’
I am still
having physio’ in the hydro’
pool weekly and when I went
today, Marc my physio’ said that
he was going to contact
Pendlebury over the foot brace
as the brace that I have been
sent is not working and I need
to be fitted for a different
kind.
11th
October 2006:
I
have been getting very
breathless recently so mum took
me to see our family G.P today
who sent me for a chest X-ray.
A
chest x-ray allows a look at the
inside of the chest. Rays that
pass through the body to create
a black and white negative type
picture achieve this. A chest
x-ray examination itself is a
painless procedure and I was
only in the X-ray department for
about 10 minutes.
27th
October 2006: Spent the day at
Pendlebury Children's Hospital:
My
morning started by mum and me
being picked up by one of my
ambulance guys (Mike).
When I arrived at the hospital I
went over to Gamma Camera Unit
to have some EMLA Cream (magic
cream) applied. This cream will
numb the area to be injected to
stop it from hurting me. I have
to return to the department in
an hour to have the injection.
My next stop was to see Clair
who is making my new back brace
and foot brace. Just time to go
and have a drink before I head
back Gamma Unit. I was given an
injection, which contained 550
MBq radioactivity into a vein in
my arm. I had return to the
Department 2 hours later for the
scan. With two hours to kill, I
decided to visit to the nurses
who looked after me when I was
very poorly last year. Mum and I
also went an had some dinner.
What is
a Bone Scan?
A
bone scan is a very sensitive
technique and when the
radioactive substance is
injected, it travels through the
bloodstream and collects in your
bones. The purpose of this study
is to take pictures of my bones
to help the doctor diagnose if
my condition is affecting my
bones.
After emptying my bladder, I was
asked to lie down on a couch,
and pictures of my bones were
taken using a gamma camera. I
did not need to take off any
clothing. Only remove my
jewellery. In order to get good
pictures the camera will be
close and I had to remain very
still. The scan took about 30-45
minutes. My result will be sent
to the doctor who requested the
study
November 2006:
I
went to see the doctor over the
tumour on the lung he was going
to keep me in because he was
worried that I may have a blood
clot. But decided I could go
home on the conditions that I
came back the next day, urgent
blood tests were done along with
other test.
Back at the hospital the
following day and I’m told the
test results were inconclusive
and that blood test came back
slightly raised and that my
breathing was very fast, yet
again unsure if I should be kept
in or not, I was at the hospital
over four hours before he
decided I could go home only to
return the following day for a
VQ scan (ventilation perfusion
scan),which is a type of
radionucleid scan which uses
various radio-isotopes
(substances which emit
radiation) to assess the blood
supply to the lungs and how well
each part of the lung is
ventilated. I had the VQ scan to
check that I did not have any
clots on the lung (pulmonary
embolism).
Technique and preparation:
No
specific preparation was
required. This test took about
15- 20 minutes and was done as
an outpatient. When I arrived in
the department for the VQ scan
it was in the Nuclear Medicine
Department, which was situated
in the X-ray department. I was
asked to lie on a couch and a
small needle was inserted into
my vein. I then had a small
injection of a radioactive
substance. The radiographer then
positioned the camera next to my
chest and asks
me to
keep still. The radiographer
stayed in the room as did my
mum, he watched the images as
they were displayed on a
television monitor. Six or eight
different views were taken, each
one taking a few minutes. I also
had to breathe in a radioactive
gas through a mask, which was a
little uncomfortable. The
process only took about 15
minutes. The two sets of images
are then compared. The only
discomfort I experienced was
that of the injection and the
mask. The radiologist said he
will write a report and send it
to my doctor who asked for the
scan to be done.
11th
November 2006:
I
was in so much pain this evening
that dad took me to the A & E
department, mum was out but when
dad text mum to say he was
taking me to the hospital as I
was not so well, mum said she
will meet us at the hospital. In
the hospital blood test were
done and urine test, again my
breathing was very fast. But the
doctor thinks the pain is down
to the tumours round my kidney
area. I was allowed home later
that evening and told to rest
and come back if things got any
worse.
Results
Back:
The doctor phoned to say he was
happy with the VQ scan (no clots
were found in the lungs). But
that he now wants me to have
some lung function test done
with my breathing being so fast
and my lungs being so small.
My VIP Trip to Asda with
Coleen Mcloughin:
I was
nominated to open the Asda Store
in Altrincham by a very nice
gentleman called Derek Hollows,
I did not know anything about
this until I received a call
telling me that I had been
chosen. I was told I would be
treated like V.I.P and picked up
in a Limo' and that Coleen and I
would open the Asda store, well,
when I arrived at the Asda store
there were so many people
outside and TV cameras that I
really did feel like a V.I.P.
Everyone was so nice after
opening the Asda Store with
Coleen we both went shopping in
the store and Coleen gave me
lots of shopping tips, she was
really cool and very friendly. I
was interviewed for the TV News
and later we went for a hot
drink where Coleen and I chatted
about my fund raising. My
interview was on the 6pm TV
News. I came away with lots of
lovely clothes and items for my
bedroom, over £250.00's worth of
stuff.
October 2006:
I am off
to London for a few days,
as I had won the Well Child
award for best brave child age
16 years and over and I will be
in the Best magazine the week
beginning 28th November '06. I
was presented with my award by
Peter Schmeichel the greatest
Goalkeeper in the history of
Manchester United. I also met
Dick and Dom
I am busy getting ready for my
Charity Ball on the 18th
November '06, it's been really
hard work and I could not of
made this event possible without
the help of my friends Keith and
Pat they have been brill' and
very supportive after they read
my story in the Manchester
Evening News. I hope to raise
£10,000,00 on night. Julie
Hesmondhalgh (Haley from
Corrie'), Ian Kershaw
actor/writer, Colin Bell
(Manchester City Legend), Tony
Martin (The Crooner) and Mr
Bernard Manning will all be at
my event on the night.
22nd November 2006:
I would
like to say a big thank you to
everyone for their participation
in last Saturday's fantastic
event and everyone's amazing
generosity, we managed to raise
a staggering £24,801.63p and
although I was extremely tired
for a few day's after. I am
really pleased with the amount
we managed to raise.
Julie and Kersh worked really
hard on the auction, Keith, Pat,
Alex and the team from the Copy
shop worked really hard. I could
never of done this without there
help. My picture went at auction
for £2.100.00 and I was asked to
do a second one, which went for
£2000. bringing in £4.100.00
towards my target.
15th November 2006:
I
had to go and see my doctor to
day, I received letter saying
she wanted to see me over some
test results. The scan on my
kidney was good and there were
no tumours in or on the kidney.
But it did show that I had
tumours on the tissues and
muscles around them so I have
got to go and see this other
doctor now, which should be
before Christmas. I have also
been losing weight and have lost
about 6lb over 4 weeks, but
don’t know why. back at hospital
on Wednesday.
News on the NF2 Blood test:
I am
pleased to say that mum received
a phone call this week from the
hospital to say the blood test
results were back and I don't
have NF2 only the NF1. I have
got to have a colonoscopy due to
having had some bleeding.
What is
a colonoscopy?
A
colonoscopy is a thin, flexible,
telescope. It is about as thick
as a little finger. It is passed
through the anus and into the
colon. It can be pushed all the
way round the colon as far as
the caecum (where the small and
large intestine meet). The
colonoscopy contains fibre optic
channels which allows light to
shine down so the doctor can see
inside your colon.
My
doctor advised that I have this
test due to the symptoms I was
getting such as bleeding from my
bottom, pains in the lower
abdomen. My colon needs to be
empty so that the doctor can get
a clear view. I have to take a
special diet for a few days
before the test and I have been
given some laxatives to take the
day before the test. They are
going to give me a sedative with
being so young.
8th December 2006:
I have
been invited to London to meet
Ben Shepard by Chloe and spend
the morning watch him present
GMTV and Entertainment Today.
Mum and me had a brill' time and
Ben was just as nice as I
expected him to be. I even got
an hug and kiss. I also met some
other celebrities, Jason
Donavan, Andy Abraham, Michael
Underwood and lots of other GMTV
presenters.
14th December 2006:
Today I
handed over a cheque for
£24,801,63p to Ruth from When
You Wish Upon A Star with the
help of Keith and Pat from the
Copy Shop. This will be on
Channel M on Monday 18th
December 06.
January 2007: Lung Function
Test:
having
Lung
function tests, which are being
done to help determine the cause
of my shortness of breath.
Lung (or pulmonary) function
tests test show efficiently I am
breathing. I was asked to put on
a nose-clip so that all my
breathing takes place through my
mouth, then I had to breath into
a mouthpiece attached to a
machine that measures the air
that I breath in and out.
I had to breath in a special mix
of oxygen and carbon dioxide to
see how well my lungs are
absorbing the oxygen and
excreting the carbon dioxide.
I
had to take deep breaths then
exhale as fully as possible, I
had to keep repeating the test
over and over again as they were
not happy with the reading. I
had a few different breathing
exercises to do, which did make
me feel dizzy and breathless.
I had to
stay and see the doctor for the
results of the test.
The doctor said that he was not
sure what was going on as the
lung function test came back
with some abnormalities but he
was still not sure if it was
anything to do with the tumour
on the lung or not. He thought
the tumour was on the outside of
my lung when he first looked at
the chest x-rays but after
having the Gamma scan he said
the tumour is inside the lung
and that this will be kept an
eye on. He is now going to have
a chat with another Chest
Specialist to discuss the test
results and to see what he
should do next.
Sheffield Children's
Hospital.
I
went to Sheffield Children's
hospital to see Dr. Godard, Sue
and Rebecca who are all part of
the pain team.
After having a chat with Dr.
Goddard and the team about how
my pain had been Dr. Goddard
decided that I should also take
Ketamine to help with the pain,
I only have to take this when
the pain is bad and no more than
twice a day. Ketamine is a
powerful anesthetic drug;
Ketamine also works as a pain
killing drug. If things don’t
get any better I may have to
think about going on some much
stronger medication. Susan also
gave me some more advice about
the V T.E.N’s machine that they
gave me last time.
St Mary’s Hospital:
I saw both
Dr. Sue Huson and Rosemary
Abbot, Dr. Huson felt it would
be a good idea if I had a PET
Scan.
PET stands for Positron Emission
Tomography. This is a fairly new
type of scan developed in the
1970s. It can show how body
tissues are working, as well as
what they look like. The scan
produces three-dimensional,
colour images of the body using
radiation.
It can be used to
diagnose a health condition, or
find out more about how a
condition is developing. It can
also be used to measure
how well
treatment for a condition is
working.
A
PET scan works by detecting
radiation inside the body, and
makes images that show how the
radiation is being broken down.
Radiation is given to the body
safely as a medicine called a
radiotracer, so it goes to the
part of your body that needs to
be examined. The level of
radiation is very small, so it
doesn't damage the body.
21st
January 2007:
I
received a letter over the
weekend, which said I had been
nominated for the Cheshire Woman
of The Year Award 2007. I have
been invited to lunch on the
21st March at 12.00 noon. The
winner will be presented with a
trophy and a cheque for £1000.00
to be donated to the charity of
her choice. I don't know who
nominated me and they said they
cannot tell me, so this came as
a big surprise. All I'm told is
that women from all walks of
life are nominated for personal
courage, service to their
community or outstanding
professional achievement.
24th January 2007:
Tomorrow
I'm having the colonoscopy test,
I will be admitted to hospital
as a day case as I am being
sedated to keep me comfortable
and to help me relax during the
examination.
Colonoscopy Test:
Because
of the problems I have with
needles the nurse put some magic
cream on my arm in two spots,
this was meant to stop the
needle from hurting. After two
doctors having four attempts
each at trying to get the
cannula in my arm they had to
send for the theatre doctor to
have a go. My arms are so
bruised, I was crying with the
pain (not like me), the nurse
was almost crying and so was
mum, the doctor said my veins
are so bad they just kept
blowing every time they went in
with the needle. The theatre
doctor said the only place left
to go now was in the wrist on
his first attempt the vein went
again. Mr. Crampton came in to
see if he could help and kept
saying he was sorry that I was
having such a bad time. The only
place left now was my other
wrist, and at last the doctor
managed to get the cannula in,
now both my arms are black from
the amount of needles I had (ten
in all).
Why I had my colonoscopy?
I was
advised to have a colonoscopy
due to symptoms such as bleeding
from the anus, pains in the
lower abdomen that I was
getting.
What happened during my
colonoscopy?
I had my
Colonoscopy test done as a day
case. I was given a sedative to
help me to relax. This was given
by an injection into a vein in
the back of my wrist. The
sedative made me feel a little
drowsy but did not 'put me to
sleep'. It is not a general
anaesthetic.
I had to lie on my side on a
couch. The doctor (Mr. Crampton)
gently pushed the end of the
colonoscope into my anus and up
into my colon. The doctor could
then look down the colonoscope
and inspect the lining of my
colon. This was then transmitted
through a camera attachment onto
a TV monitor for the doctor to
look at.
Air was then passed down a
channel in the colonoscope into
the colon to make the inside
lining easier to see. At the end
of the procedure the colonoscope
was gently pulled out. The
colonoscopy took about 30-40
minutes.
Pendlebury Children’s
Hospital:
Mr. Oxborrow sent me for an
x-ray, when I got back I went
into see him, looked at the
x-rays and was really pleased
that my spine had not gone any
worse at the top and said the
spine had fused well and just
looked like solid piece of bone
now, if things stay the same I
will not need another op’ on my
spine.
He
than asked why I was using the
crutch, I told him about the
drop foot and he asked me to
take my shoe and foot brace off
so that he could have a look. He
did a few tests and said “yes”
you do have drop foot and wanted
to know how long it had been
like that? He than called to
another doctor and asked him to
arrange for an urgent scan of
the bottom of my spine and
pelvis area to be done. He is
worried that I may have a tumour
at the bottom of my spine below
the mettle work.
My
drop foot was very sudden really
and this would answer why I have
been getting so much pain in my
lower back and groin area too.
He
asked when I next see Mr. Thorn,
which is in April and mentioned
that he had spoken to Mr Thorn
about the pain that I was in, Mr
Thorn had told him that I have
multiple tumours all over my
spine and he was not sure what
to do or if removing any of them
would help.
2nd
March 2007:
I am
going to have a documentary made
about me, which will be called
The Day in The Life of Kay,
filming starts next week and
will be done over two days. I am
really looking forward to doing
it, they are going to film me at
college, hospital, at home and
with my mates. Not sure when it
will be on TV yet.
Filming
Finished:
After the
crew had gone home on the
Wednesday we were all really
tired, I was going to go to bed
but as I was not feeling so well
mum asked me to stay down so
that she could keep an eye on
me. I am so glad I did because
about an hour later we heard
this funny sound coming from
upstairs what sounded like air
in the pipes. When dad went up
the boiler in my room had burst
letting out boiling hot water
all over my bed down the wall on
to the carpet. Chris (my
brother) managed to get the
water shut off and got this guy
who he knows to come out and
have a look at it. He said that
I was not only lucky that I was
not in the room at the time but
the boiler had been giving out
toxic fumes, which could have
killed me in my sleep.
My
bedroom is gutted, we had to get
a new boiler, we are had the
boiler moved into the loft for
safety reasons. I was so upset
as my teddies got it too and are
now ruined. The story of my
boiler made the Sunday paper,
see
link.
March 2007: Results of M.R.I
Scan:
The
documentary I took part in is on
sky, the community channel on
the 21st May but I don’t have a
time slot yet. I will let you
know when I have more news. It
is only going to be on TV for
about 7 min's but you can see
more on the internet.
I
went for the results of my scan
last Friday, the news was not
good, and my doctor told me that
I have a new cluster of tumours
at the bottom of my spine, which
has caused the foot to drop. He
said one of the tumours was over
3cm and the cut off point was 2
½ cm, he was also worried that
the tumour in my neck had grown
yet again and the one in my lung
was giving him some worry. He
phoned this other doctor on her
mobile to tell her about the
results and she wants to see me
next week when she is back in
the hospital, in the mean time
she wants all my scan reports
getting together for her to look
at. So I’m not sure what will
happen next until I have seen
this doctor.
26th
March 2007:
After the
hospital on Friday I went to see
the filming of Britain’s Got
Talent it was really good, I got
to see Ant and Dec, Simon Cowell,
Piers Morgan and Amanda Holden.
The new concept for this show,
required each of the three
judges to light an X' if they
wanted the act to get off stage.
If the act managed to stay and
do all there act they got to go
to the next stage. it was great
fun to watch.
The documentary I took part in
is on sky, the community channel
on the 21st May'07 but I don’t
have a time slot yet. It is only
going to be on TV for about 5
min's but longer on the
internet. I will let you know
when I have more news.
April 2007:
Received a
letter from Dr. S Huson this
morning telling me that she has
written to Dr. Hules regarding
the PET Scan. PET Scanning has
been shown to be very useful for
people with NF1, to show whether
any of the neurofibromas has the
potential to turn nasty. Dr
Huson said is she is not worried
about any of my neurofibromas at
the moment after examining me in
clinic a few weeks back.
Mum phoned
to confirm my appointment for
the PET scan only to be told it
had been cancelled Dr. Brennan
is going to see me as soon as
she has reviewed all the scans
etc. Dr. Huson and Dr. Brennan
feel that to do the PET scan
before that may complicate
things further. Also that all
the Doctors involved in my care
need to liaise (Mr. Oxbarrow,
Mr. Thorne, Dr. Barber, Dr.
Brennan and Dr. Huson), Dr.
Brennan is going to coordinate
this.
10th April 2007:
Where do
I begin to tell you what a great
Birthday I had? My morning
started with me waking up at my
Ronnie grans due to the accident
at home I still cannot sleep at
home. When I got home and after
opening all my lovely gifts from
family and friends, Mum
mentioned that we were going out
and that I needed to be ready
for 5.30pm as we were going for
a meal before going to watch a
show at the Lowry called ECLIPS,
a circus musical, which Julie,
Kersh and Martha had treated mum
and
me to for
my
Birthday. When
5.30pm came dad asked me to get
in the car so that we could get
going
and as we
went round the corner on our
estate dad stopped the car and
asked me to get out, I could not
believe my eyes when I saw
Paddy, as a Birthday treat Paddy
and Paul had arranged to pick me
up in there Limo' Chrysler 300 C
(Hemi/ Bentley) limousine...
Mum and I arrived at The
Deansgate (where we were having
our meal) and we were met
outside by Colin (Paul’s
brother) who escorted us to our
seats. Paddy then took us on to
the Lowry to watch Eclipse; we
had the best seats in the house
and the show was amazing.
Eclipse is a journey of the
seasons through the elements of
earth, wind, fire and water. It
had international cast of
talented artistes, telling a
dramatic fantasy tale ballet,
mime, song, dance, aerialists,
juggling, rhythmic gymnasts,
acrobats. I loved the playful
jugglers. You've seen nothing
until you've seen Eclipse! The
UK's first and only circus
musical.
19th
April 2007:
Unfortunately the hospital did
not go so well today, Mr. Thorn
my doctor put the scans up for
me to see and told me that I
have at least one tumour on
every nerve that is coming out
of my spine some of which are
above 4cm. He also thinks that I
may be starting with foot drop
in my other leg and will need to
wear a foot brace on that leg
soon. Mum asked him about trying
to remove some of the tumours
and he said that it would cause
more damage if he did and he was
not sure if he could remove any.
May 2007:
I had the lung function test
repeated today so the doctor
could see how efficiently I am
breathing since my last test.
What I had to do for the lung
function test:
I was asked to put on a
nose-clip so that all my
breathing took place through my
mouth, then I had to breathe
through a mouthpiece attached to
a machine that measured the air
that I was breathing in and out.
I found this really difficult
and was asked to repeat the test
a number of times. On one of the
tests I had to take a really
deep breath then exhale as fully
as possible to measure my Forced
Vital Capacity (FVC); this I was
asked to do a number of time
because I was not getting the
peak that they wanted on the
chart. I also did a test where I
had to breath in a special mix
of oxygen and carbon dioxide to
see how well my lungs are
absorbing the oxygen and
excreting the carbon dioxide. I
then had to go and sit in small
chamber for some more breathing
test.
How the lung function test
will help:
Lung
function tests are used to help
determine the cause of shortness
of breath and other breathing
difficulties. They can help to
differentiate between different
forms of respiratory disease,
such as obstructive conditions
like asthma or problems caused
by infections such as PCP.
May 2007:
An MRI scan
usually gives the clearest scan
of the brain and spine. I had to
have an injection of a dye,
called contrast medium, to make
the MRI scan clearer. I was not
happy about the injection as
when my mum phoned the x-ray
department they told her I was
not having the dye so would not
need an injection. When the
doctor came in the room and
pulled me from the MRI machine I
thought he was joking when he
said I was going to need a
needle. So yet again the doctor
had problems trying to get the
needle in my arm, which left my
arm with several bruises and me
feeling really dizzy and sick.
10th May 2007:
My
bed came and then had to go back
as it was too big for my
bedroom, I can't believe it as
they told me it would fit. I
have now got to see if the O.T's
can get a smaller one.
12th June 2007:
I have
still not got my electric
profiling bed this is all
because the OT's ordered the
wrong size bed.
I saw Dr. Crompton the
Gastroneterology doctor who said
my results came back ok but that
he wanted me to try docusate
sodium capsules 100mg x2 at a
night and see if that helps with
the problems that I am getting.
The
tumour in my neck has continued
to grow and I have to see this
other doctor on Thursday with a
high possibility of having to
have surgery on it. The test
that I had done on the lung are
still inconclusive so I have to
have more x-rays in July and
at that point
if the tumour in my lung has
grown then I will need to have
part of my lung removed.
15th June 2007:
Thursday
did not go so well, I have got
to have surgery on my neck, arm
and side. I will be in hospital
a couple of days depending on
how things go as they may be a
problem with the surgery on my
neck as the doctor is not sure
what nerves the tumour is
attached too yet.
15th June 2007:
I have
been invited to have lunch with
Prince Harry and Prince William
on the 30th June '07 at Wembly.
1st July 2007:
Back
from London, mum and I had great
time meeting Prince William and
Prince Harry. I spoke with
Prince William, he asked me what
I thought about the Spice Girls
getting back together and what
were the bands that I liked
best, he then spoke about
WellChild and wanted to know how
I became involved with them,
Prince William was taken back
when I told him how much money I
had raised and wanted to know
what I done to raise so money.
After chatting with Prince
William we went for a meal,
after the meal we had a photo
call with Prince William and
Prince Harry, I sat next to
Prince William, then we went
into the Royal Box at Wembly to
watch some of the concert that
was being put on in memory of
Diana. I was asked to do an
interview for the BBC News, Sky
TV and Radio. The day was
brilliant and everyone was so
kind.
Mum also
received a call to say that Mr.
Oxborrow had ordered an urgent
MRI scan of my pelvis, which I
think is due to the results of
the Nerve conduction test.
14th August 2007:
Both mum
and me went to watch the The
Antony Cotton show being filmed
last Friday, it was really
enjoyable, the show went out on
TV last night and both mum and
me were featured on it in the
audience, mum got stopped going
to the shops today to ask if it
was her in the audience last
night lol..
September 2007: Scan and
nerve conduction results:
I went to
see Dr Huson (my NF doctor)
today for the results of my
nerve conduction test and pelvic
scan results. Unfortunately the
nerve conduction test showed
that I do have damage to the
major nerves that work my legs
and feet, which is why I have
developed the foot drop in both
feet and pelvic scan showed that
I have tumours all round and on
the major nerves in the pelvis,
which is why it’s been decided
that I should have a PET scan
done. Dr. Huson said if any of
the tumours show up as a grade 3
then it may mean a trip to a
hospital London, which I don’t
really mind if it helps doctors
to understand NF a little more.
But it’s not all bad news as
when Dr Huson looked at my feet
they had not got any worse.
Dr. Huson did talk about
contacting a doctor in the USA
to ask if I would be suitable
for the drug trial, but I have
got two years left at college so
we decided we would leave that
idea for the time being and see
how things go with the PET scan
and my foot drop first.
What is a PET scan?
PET stands
for Positron Emission
Tomography. I was meant to have
this scan a few months back but
it was cancelled. But now due to
the pelvic scan I had it’s now
been decided I should have the
PET scan.
The results:
It
will take about two weeks for my
test results to come through.
The scan will be examined by a
specialist in radiology or
nuclear medicine and a report
typed up. The report will then
go to my specialist (Dr. Huson),
who will contact me if need be.
October 2007:
A
lot has been happening recently,
the good news being the recent
tumours that I had removed were
not nasty, which was great news.
The doctor looked at my foot as
I had been getting a lot of pain
in it and she said that I have a
tumour that is deep into the
bone and that it would be a good
idea to have it removed, which I
agreed with. But not before
Christmas as I hope to take my
driving test in December, the
doctor said that would be ok as
long it did not get any worse.
She also looked at my tummy as I
has been getting a
lot of pain around the kidney
area so she decided to arrange
for me to have an ultrasound
scan of my kidney’s to make sure
I don’t have an tumours on my
kidney’s. I have got PET Scan on
Friday.
What a PET scan is:
P.E.T
stands for Positron Emission
Tomography. This is a fairly new
type of scan. It shows how your
body tissues are working, as
well as what they look like. The
test involves having an
injection of a small amount of
radioactive material, using the
signals from this radioactive
injection a scanning machine can
build up a picture of the part
of the body. PET scans can be
used to look for abnormalities
in the tissues.
PET scans are not a routine test
and are usually only used for
the small number of patients for
whom other types of scans cannot
give all the information their
doctors need.
10th November 2007:
PET scan
went ok, I had to lie in this
quiet room for 45+ min's on my
own while the radiation that
they injected went round my body
and then they took me in the
scan room, the scan took over an
hour as they scanned from head
to toe. They would not let my
mum come in with me.
December 2007:
My doctor
is having a meeting next
Wednesday over the results of my
PET and will phone my mum on
Thursday with the results and
tell mum what happens next.
My mum received a call from my
GP today asking her to bring me
to see her this afternoon, when
we got there my doctor called me
in and said she had received a
letter from my physio' over my
knee problem. My physio' wants
me to have an MRI scan of my
knee due to the amount of falls
I have been having, I now have
to wear a brace on both knees
due to a problem with the
ligaments being damaged. My
doctor is sending a letter to
the orthopaedic surgeon to
inform him of the new problem.
January 2008:
Mum
received a call from my Nf
doctor on the evening of the
28th December 2007 to say that
she had received a call from the
doctor who did the P.E.T scan
and that he felt it would be a
good idea if I had the P.E.T
scan done again as he thinks it
was a cold day on the day that I
had the scan and may not of
given a correct reading and he
is going to use my last P.E.T
scan as a base line. My Nf
doctor wants to see me in
February to have a chat over how
things are going and to explain
the P.E.T scan to me.
22nd January 2008:
I saw my
pediatric orthopaedic consultant
today who looked at both my
knees, he said that both knee
caps were loose but one more
than the other and that there
was a lot of swelling to the
back of the knees, he was unsure
why and decided it would be
better to do an MRI scan of both
knees. The hospital phoned
yesterday and I have got to go
on Friday for the scan.
9th
February 2008:
I have
had a busy few weeks. Channel M
contacted me and asked if they
could come and interview me for
the Well Child Award and talk
about my condition and the
charity Ball that I am having.
Beverly Walkden came to
interview me, she was really
nice and great fun to talk too.
My camera man was called "Mark"
he was really cool too. I was on
channel M on Monday 4th
February. Beverley and Mark are
both coming to my Ball next
week, so if you can get Channel
M look out for some clips of my
Ball on the news.
I was also asked to do a live TV
interview for Channel 5 on
Thursday 7th February, both mum
and I went down to London to do
the interview for the Channel 5
News.
I am also in the running for the
Champion Children's Award with
the News of the World.
14th February 2008:
Getting
very excited now, my charity
Ball is on Saturday, Keith, Pat
and Alex from the Copy Shop in
Cheadle have helped me so much
to make this Ball a success, I
can't begin to find the words to
thank them all.
I have been asked to do a live
TV interview on Monday morning
18th February 2008 for channel
M, where I will talk about how
my Ball went. I will be on the
breakfast show.
The Manchester Evening News will
be covering the story too and
coming along on the night to
take pictures.
18th February 2008:
My
charity Ball went really well, I
had over 200 guest including
Julie (Haley from Corrie'), Ian
Kershaw (actor/writer), the boys
from Eton Road, Rowetta from X-
factor, The Mersey Beetles and
Vince Miller. Guest travelled
from as far away as Holland,
Scotland and London. some of my
doctor's and nurse's also
attended. Lot's of money was
raised.
14th March 2008:
My
Valentine Ball raised a whopping
£23,000.00 and I presented the
cheque to Carole from the wish
team on Thursday 13th March
along with Eton Road (David,
Marcus, Danny and James), Keith
and Pat Oldfield who were my
sponsors and just amazing
people.
March
2008:
My back and
legs have been really painful
and I had to wear my back brace
for college to try and help with
the pain.
I am going into hospital on the
9th April for an operation on my
foot, I have got a tumour that
is deep into the foot and is
giving me some pain when I try
to put my shoes on.
There is a small story
about me in the Chat Magazine
this week, which tells you a
little about me and about my
fund raising.
March
2008:
I saw my NF
doctor (Dr. Sue Huson) last
week, Dr. Huson explained that I
will be having my PET scan in
May as they want to make sure
the tumours on my spine and in
my pelvis are not growing too
fast, if it turns out they are
growing I will have to consider
having them removed.
1st April 2008:
I was
back at Pendlebury Children's
Hospital this morning to see Mr.
Henry for the results of the
scan I had on my knees in
February, Mr. Henry gave me the
report from the scan, which
said:
Both knees,
thighs and proximal calf have
been included in the scan. There
are innumerable neurofibromata
of high signal on fluid
sensitive sequences distributed
alongside the neurovascular
bundle of both thighs extending
behind the knees and into the
calves. Scattered smaller
lesions also seen within the
muscles and subcutaneous
tissues. The larger lesions
measure up to 3 cm with a
diameter of around 1.5 cm. There
is an interamuscular
neurofibroma with a diameter of
1.3 cm in the medial head of the
right gastrocnemius within the
popliteal fossa. Adjoining
cluster of smaller
neurofibromata is also seen.
Multiple neurofibromata also
fill up the left popliteal fossa.
There is no popliteal cyst seen
communicating with the knee
joint. No significant effusion
seen within the knee joint. No
marrow signal changes are seen
either. The internal knee
structures including menisci
cruciate and collasteral
ligaments are grossly normal.
After reading the report and
looking at my knees again Mr.
Henry told me he would not be
able to remove any of the
tumours as I may end up worse
off. But if the tumours continue
to grow the situation will be
looked at again and it would be
a plastic surgeon that would
have to remove the tumours not
him.
The report will be sent to Dr.
Sue Huson my NF doctor for to
look at and decide if anything
is needed to be done.
April 2008:
I had an
appointment to see Mr. Oxborrow
last Friday and after having an
X- Ray on my spine Mr. Oxborrow
said the spine has now
fused
together, which is a good thing.
I have been getting a lot of
pain at the top and bottom of my
spine, which I mentioned to
Mr. Oxborrow. The pain does wake
me up in the night and tends to
get worse throughout the day.
Mr. Oxborrow wants me to move
over to adult services now that
I am 18 years old and to do more
physio' to see if this will help
as he thinks it could be
muscular pain that I am getting.
he wants to see me again in six
weeks to see if things have got
any better.
he also mentioned that one of
the screws may of split at the
top of the spine and will look
into this in more detail.
I don't mind moving over to
adults as long as I stay with
Mr. Oxborrow, I don't want to be
seeing anyone else.
I
told Mr. Oxborrow (my spinal
doctor) about the book I am
writing and he said he would
make a contribution to my book
by writing a peace for it, which
I was really pleased about. I
have also spoken to my ambulance
drivers who have been taking my
mum and me to the hospital every
week for the last three years
and they would also like to make
a comment in my book for me.
It's taken a long time to write
but I can soon start looking for
a publisher who will publish my
book for me.
I
am going into hospital for
surgery on my foot tomorrow, I
should only be in a couple of
days thou depending how surgery
goes.
11th April 2008:
Just to
let you all know I am home from
hospital after having two
tumours removed, one from my
foot and one from my chin.
I had to go on the drip for a
few hours as I was being sick,
but this is only to be expected
after surgery. Everything seems
to have gone ok with the surgery
and I am not in too much pain
now. I go back to dressing
clinic next week to have the
stitches removed and the
dressing changed. I am having my
PET scan on the 3rd June at
Christies Hospital, having had
one of these before I know what
to expect.
Manchester Hero Awards:
Someone
has nominated me for the
Manchester Hero Award, I don't
know who it was, but all I have
been told is that a few people
have put my name forward for the
award. I was in the Manchester
Evening News on Wednesday, I was
in hospital and one of the
doctors came up to me and said
"we have a celebrity on the
ward" and I asked him who it
was? and he said "you", he had
just read about me in the paper
lol... I really thought we had a
celebrity on the ward too. I was
also on the Channel M, TV, News
over the award. I was a little
embarrassed because I did not
know why I had been nominated
really. I find out in June if I
have won, so I will let you know
then.
25th April 2008:
I have
just found out that I am also in
the final for the Huggable Bear
Hero Award, which is run by the
bear factory. I find out in May
if I am one of the two winners
from the UK to win the award and
if I do mum and me are off to
Washington DC for four days in
July, I also win money for my
charity and a scholarship for
University, which would be
brilliant.
7th June 2008:
I have
just found out that I am one of
the 25 winners of the Manchester
Evening News Hero Award, I will
be going to a big award ceremony
on Thursday next week. Each of
the winners will receive a
£1,000 reward, which they will
be presented with at a special
ceremony on June 12. I am going
to use my money towards getting
my book published so that it can
start helping others with NF and
Scoliosis.
12th June 2008:
This
evening mum and I went to the
Manchester Hero Awards, which
was sponsored by Barclays and
M.E.N as it prepares to open
it’s flagship branch on Market
St. The awards honoured some
exceptional people from across
Greater Manchester. The 25
winners came from all walks of
life, from have a go hero’s to
another young boy who raise’s
money for charity. I felt
honoured to be part of the
celebration. Kym Ryder presented
the awards; we each received
£1000, 00 and a framed
certificate.
17th June 2008:
This was
my first visit to see Mr. Neil
Oxborrow at Hope Hospital, it
felt strange not seeing him at
the children's hospital.
Mr. N Oxborrow was not expecting
to see me as it was not really
his clinic, he was just filling
in for Mr. Williamson.
Mr. Oxborrow was
still unsure if the rod had
moved at the top of
my spine
but was not too worried about
it, he is going to look at my
old x-rays and compare them to
see if the rod has moved too
much. I have got to continue
with my physio’ and try and do
more physio’ at home too.
I
go back and see
Mr. Oxborrow in nine months to
make sure everything is ok, but
he is going to contact me in the
next four to six weeks after
he’s had time to look over both
x-rays.
I wanted to get a
picture of Mr. Oxborrow for my
book, he is also writing a
document for my book.
Vicky, My tissue viability
Nurse:
Vicky
came to see me so she could
measure both my legs for some
compression hosiery stockings as
my ankles keep swelling up.
It was important for Vicky to
assess each of my limbs for
suitability for compression
treatment before application.
Mum went
and picked them up from the
chemist this afternoon and I
found it really difficult to get
them on. I am at the hospital
for my physio’ tomorrow so I
will mention this to my physio’
as he may have some tips on how
to get them on more easily.
June 2008:
My weekly pain clinic visit, the
treatment that I am trying for
my pain is called External
Neuromodulation and is used for
the relief of chronic pain.
This treatment was developed at
the renowned INPUT Pain Unit at
St Thomas’ Hospital, London. It
targets the nerves responsible
for your pain. It changes the
behaviour of the nerves so that
your pain is reduced. It is
normally used for neuropathic or
nerve generated pains. These
tend to be unpleasant and
described by such terms as
“burning”, “prickling” and
“tingling”.
What happens during
treatment?
A sticky
electrode and a metal probe was
placed on my skin and a very
small electrical current
directed at the nerves
responsible for my pain. Asmall
amount of gel was used on the
tip of the probe.
The treatment last about five
minutes at each area of the
pain, after my treatment my pain
was reduced but this was only
temporary. Some patients have
got weeks or months of benefit
from this treatment and when
their pain did return it was
with less intensity. I am having
treatment once a week for the
next six weeks when things will
be reviewed.
13th June 2008:
They say
Friday the 13th unlucky for
some, well, this was not an
unlucky day for me.
Mum said we were going to the
Trafford Centre to get my grans
teddy from the Build a Bear work
shop, when I got there I was
busy looking round when the next
thing I knew Helen (the manager)
came up to me holding a
beautiful bunch of flowers and a
teddy and told me that I had won
the huggable bear hero award for
the UK and would be flying out
to Washington DC in July to
receive my award, which is money
for my charity and a scholarship
to University, I was total shock
and could not believe it.
Channel M filmed it all and
later interviewed me, which was
on TV this evening.
July 2008:
The new pain treatment seems to
have helped the pain in my
shoulder a little but not the
pain in the back. I have got one
more treatment to have when
things will be reviewed again.
4th July 2008:
I am off to Washington DC on
Tuesday morning with my mum.
8th July 2008:
Mum and I
are off to Washington, DC this
morning for the Huggable Bear
Hero Awards so it was up at
5.30am for us both as we have to
be at the airport for 7am. Dad
arrived home early from his
night shift so that he could
take us.
I had been told that one of the
Build a Bear Associates was
going along too and that his
name was Chris, he was
travelling from the same
airport as me so I knew he would
be on the same flight, I had
been told what he looked like
and when I arrived at the
airport both mum and I saw this
young man stood with an older
guy we looked at each other and
both said “Chris”. Me being
cheeky went up to him in my
wheelchair and asked him if he
was called Chris to which he
replied “Yes” looking at me in
amazement, I then said from
Build a Bear and he said “Yes”.
So I introduced myself and my
mum and we stayed together for
the rest of the journey. The
flight over to New York was
really good the food was nice
too. But we had a four hour
delay with our connecting plane.
So we were all very tired after
just having a seven hour plane
journey. When we eventually
boarded the plane in NY it was
really small and I got out of my
wheelchair to board the plane,
mum was told to leave the
wheelchair at the side and that
they would fold it up
and make sure it was put on the
plane, unfortunately they
had problems trying to fold it
and a member of the crew had to
get mum to do it. As mum got up
she bumped her head on the over
head baggage compartment (shows
you how small the plane was), I
know shouldn’t of but I went in
to the fit of giggles along with
half the plane, “Poor mum”. Mum
folded the chair and we were on
our way finally getting to our
hotel at 10.30pm Washington, DC
time, so it was like 3.30am for
us and we had been up almost 24
hours. We were picked up in a
limo’ and taken to the hotel
where we were met in reception
by a very nice lady from Build a
Bear, she asked us to order a
meal and drink and that she
would see us in the morning.
When I went up to our room there
waiting for me on the table was
this basket of goodies from
Maxine Clark. We were really
tired and managed to get a great
nights sleep, the beds were so
comfy.
9th July 2008:
We were
up early as we had to be at
breakfast for 7am due to the
busy day that we had ahead of
us. After mum and I had finished
breakfast I just had time to
head back to our room and get
showered before it was time for
my photo shoot. I was told I
would feel like a star for the
day, which I did. I had my hair
and make-up done before heading
over to the stylist who had a
selection of clothing and
trainers for me to try on. I
chose this really cool multi
coloured jacket, a green top,
pink trainers and a pair of
sweat jeans (the jeans cost over
£100.00). A few weeks earlier I
had picked and dressed two
teddies, one that represented me
(I put a blond wig on it,
holding an i-pod) and one other
teddy just for fun. I was
photographed holding one of the
teddies. While I was busy doing
my photo shoot mum was being
interviewed in this other room
about my charity work and about
me (I hope she said some nice
things lol..). After the photo
shoot I was told that I could
keep all the clothes that I had
chosen apart from the jeans as
they had only borrowed the jeans
for the shoot and they had to
give them back, they were really
comfy too. Photo shoot and time
for me to do a quick interview.
By now it was getting on for
11.30am and almost time for
lunch, we were all to meet in
the Capital Room C in the hotel
as we were having a Lunch N’
Learn as a Group. We had the
opportunity to meet and learn
from some of the beary special
partners with whom Build-A-Bear
Workshop works.
I also got to meet all the other
2008 Huggable Hero’s, who
were:Anna – Colorado, Austin –
Arizona, Aymeric - France,
Christina – New York, Dallas –
Washington, Emma – Nova Scotia,
Jack – Oakville, Michala –
Kentucky, Rocco - New Jersey,
Jasmine – California, there were
also two Associate Huggable
Heroes who were: Christopher,
Warrington and Laura, Wisconsin.
There was one other winner Malka
– London but Malka was unable to
attend the awards. Each one
above names have done something
good for there community, which
is why they have been honoured
in this way. After lunch I
attended a Leadership Symposium
with some of the other Huggable
Hero’s, we all participated in a
special leadership symposium
with a lady called Kathy Cramer.
We got into two groups and
worked together as a group. The
Leadership Symposium lasted
about two hours.
By now it was 4.30pm and mum and
I were free to relax for two
hour. We went for a little walk
around Washington DC but not
knowing the area we did not want
to go to far and both being on
crutches we could not go far
anyway. We did attempt to find
the White House but went the
wrong way.
We all had to meet in the hotel
reception for 6.15pm as we were
going to the Hard Rock Café for
tea. By now all the previous
five year Huggable Hero Winners
had arrived to mark the fifth
year of the awards. Lots of hugs
were being passed around, which
was nice to see. The Hard Rock
Café had stained-glass windows
and honors the rock-and-roll
greatest stars. It was really
busy and we waited a while for
our food to arrive. We got back
to the hotel about 10.30pm and
all decided to meet up in the
hotel swimming pool where we
stayed until midnight, mum and
Debbie sat in the hot tub by the
pool.
10th July 2008:
Breakfast
was not as early this morning so
we got a little to lie in until
7am and down for breakfast at
8.00 am. At Breakfast we were
joined by Millicent Williams
Executive Director of Service
DC.
After breakfast all Huggable
Heroes from this year and the
previous four years departed to
do some community service
activity. We all got a turn at
painting a beary special mural
at Lackie Elementary. For lunch
we all sat in a big group having
a picnic lunch. Leaving our mark
in Washington, DC felt really
good.
We got back on the bus for a
special sightseeing tour of the
Washington, DC area. We saw the
White House, the Lincoln
Memorial and Washington Monument
and other classic sights.
Getting back to our hotel for
about 4.00pm, which gave us two
hour to relax and get changed
before heading off for the
Huggable Bear Hero Awards. The
awards took place at the Top of
the Hill with Chief Executive
Maxine Clark and Olympic Gold
Medal Gymnast, Dominique Dawes,
who served as the evening’s
emcee and Michelle Rhee,
Chancellor of the DC Public
School system who was one of the
keynote speakers.
The room was done out
beautifully and each table had
two teddies on it. The meal was
chicken and tasted really yummy.
After everyone had finished
their meal each one of this
years Huggable Heroes were
called up to receive their award
from Maxine Clark. I was first
up and while I was going up for
the award Dominique Dawes spoken
about what I had done to receive
the award as she did for each of
the heroes. The evening was very
interesting and memorable. We
got back to the hotel about
11.00pm and after having a chat
in the hotel reception we
decided we would all meet back
down in the hotel pool for one
last splash about. We went back
to our rooms at
about 12.30am.
11th
July 2008:
We were
up early for breakfast I had a
quick chat with some of the new
friends that I had made and then
went to get some gifts to take
back home while my mum went to
do the packing. I was given four
new teddies, a set of clothes, a
book, which Maxine had written
and lots of other nice things,
mum had a bit of job fitting
everything in the case.
We
were picked up at 12pm to take
us back to the airport in the
biggest Limo’ I have ever seen,
there was fifteen of us in
including our entire luggage and
my wheelchair, so that will give
you an idea of how big it was.
Chris and his dad, Nigel were on
the same flight as us so we
stayed together. We got back to
Manchester just after 7am
Saturday morning.
The last few days have been
amazing; everyone involved went
out of their way to make it
memorable. Both mum and I met
and made friends with some
pretty amazing people from all
over the Globe.
I
would like to say a big thank
you to the following people:
Maxine Clarke, Kate Zeidman,
Samantha Fisher, Harriet
Blickenstaff, Jacob Blickenstaff,
Jill Saunders, Kristen Hanneke,
Jay Beauvais, Jakie Bauer,
Teresa Kroll and Nicole Spiegel.
I have got a feeling I may have
missed one of the guys out and
I'm sorry if I have, but you
were all wonderful and I hope
that mum and I get the pleasure
of meeting you all again some
day.
Looking forward to seeing the
Build a Bear calendar when it
comes out later this year.
17th July 2008:
Today was
my last lot of treatment for the
pain in back and shoulder. I
have been getting a lot of pain
at the bottom of my back, to the
top of my back just above the
scar in my shoulder and the
treatment is not really helping
now. I have got to go back to
see Dr. Lieberman in October.
29th
July 2008:
This evening my Mum and I were
invited to the Didsbury and
District Rotary Club meeting
where I was presented with the
Charles Austin Volcational
Service Award. The award is
named after the late, long
serving and much respected,
honourable member of the Rotary
Club.
I was nominated for this award
by members of the Rotary Club,
which made even more special.
The evening started with us
having a three course meal
followed by coffee. Linda made a
speech about why I was being
given the award (which I have
included in my book) and
presented me with a Certificate,
£200,00 for my charity, a
portable DVD player and a bunch
of flowers. Linda then passed
over to Phil, Phil said a few
words and then presented me with
another Certificate and a cheque
for £100,00 for me to take my
family out for a meal.
15th August 2008:
My
picture (head and shoulder) is
to be transformed into a 1960’s
pop art style image. The design
called localHeads will use
photographic portraits and put
them up in lights in a 60s
pop-art style, which will then
go on display as part of a
quarter mile long archway of
faces which will take pride of
place along Blackpool’s
promenade throughout the
Illuminations season. It will be
part of the lights for the next
three years. I am one of six
chosen by Granada Reports.
September 2008:
I had to
go and see my NF doctor (Dr. S
Huson) for my six monthly
check-up. Dr. Huson gave me a
good all over medical check. I
spoke about how my breathing had
been getting worse and about the
pain in my back and in my knees,
Unfortunately Dr. Huson said my
foot drop has worsened
considerably in the past six
months, she is going to contact
my GP about all my other
problems. But has also decided
to send me to see a doctor in
London and I may have to see a
doctor in the USA due to how
things are going.
Dr. Huson said my PET scan was
looking good. But that it did
show that I have many, many
tumours on my internal nerves
and that she as never seen
anyone like me and that I was a
one off (mum always said God
broke the mould when he made me
lol.. In the meantime I have got
to continue with my physio' and
do some extra physio' on my
feet. I have also been getting
very breathless and started
being sick again so I have been
told to make an appointment with
my GP.
I am busy trying to decide which
University to attend at the
moment and what I actually want
to study, I am looking at going
into radio presenting as I use
to have my own radio show when I
did voluntary work at
Wythenshawe FM and really
enjoyed what I did at the time.
Plus I will be sat on my bum and
it will not interfere with my
disability to much.
2nd October 2008:
I am
fundraiser of the month on
Justgiving.com and the guys at
Justgiving’ donated £25 on my
Justgiving page for my When You
Wish Upon a Star Appeal. You can
read what they wrote about me by
visiting:
Fundraiser of the month,
September 2008.
Thank you to the
guys
at justgiving for picking me as
their
fundraiser of the month and for
the £25.00 donation.
27th November 2008:
I have
been nominated for the
Manchester Community Award and
have just found out that I am in
the finals and will be attending
a presentation evening on the 10th
December when I will find out if
I am one of the winners.
27th
October 2008:
I was
called in to see my GP this
morning after having had my
blood results back from the full
blood count that she requested.
As we thought the test confirmed
that I am enemic so my doctor
put me on Ferrous Sulphate 200mg
tablets, Which I have to take
twice a day for the next four
weeks and then have a full blood
count done again before going
back to see my GP and she will
tell me if I have responded to
the treatment.
Mum phoned college this morning
to explain why I had not been in
today and to let them know that
I will be in tomorrow but to
take into account that I am more
tired then usual and that they
may find I am less active and
that the ability for me to focus
is some what reduced at the
moment.
I have not got the date for my
echo test yet but my GP did
mention it this morning when I
went to see her, so I think she
was going to give the department
a call.
10th
December 2008:
I
attended the Manchester
Community Awards this evening
with my mum and good friend,
Lesley. I was in the final three
to be named The Young Citizen of
the Year. The finalist were
honoured at a glitzy Town Hall
ceremony, hosted by the Lord
Mayor of Manchester and Gordon
Burns off BBC North West
Tonight.
The event was made possible by
generous sponsorship support
from a number of Manchester
businesses which provided
services to the communities of
Manchester and have a commitment
to improving the quality of life
for residents.
A special champagne reception
for all the guest attending the
glamorous ceremony was hosted by
Xerox, in the Lord Mayor's
Parlour. I was shocked when my
name was called out as the
winner. I received a large glass
trophy with my name engraved on
it and £300.00. My award was
sponsored by Northwards Housing.
Martin Joyce, Managing Director
of Enterprise Manchester, who
sponsored the Pride of
Manchester Awards said:
"Enterprise Manchester are very
proud to award Gloria Barnwell
the Pride of Manchester in
recognition of her invaluable
contribution to Manchester's
communities". He also referred
to the unprecedented decision
they made to award an extra
"runner up" in the category,
adding: "We are also very
pleased to make a special
commendation to Kirsty Ashton in
the Pride of Manchester
category, for her remarkable
achievements in the face of
adversity." For this I received
a further £250.00, a framed
certificate and a £500.00
donation to my charity. I would
like to say a big "Thank You" to
everyone involved in the awards,
the night was most enjoyable and
well done to all the winner's
and runner ups , it was lovely
being in a room full of so many
wonderful people. The
entertainer for the night was
"The Crooner", if you have been
following my blog you will know
that Tony, The Crooner attended
my first charity Ball, he is
such a great guy with a
fantastic voice. It was lovely
to see him again.
17th
December 2008:
Yesterday
I was given the biggest surprise
of my life, I went to college
like any normal day, dressed
like a scaly, I had this nagging
cold, so did not really feel
like lessons. Peter (my tutor)
asked me to lead the lesson, I
was doing my work when Calvin
Valentine (Ricky Whittle)
entered the room with a camera
crew and said "I'm looking for
Kirsty Ashton", I was like eer,
eer, "Hi!" He said "do you know
why I'm here?" I said "No", he
said "well come over here and
give me a cuddle". He said that
I had done so much for other
poorly children, that they had
decided to do something for me
and that he was going to take me
to Liverpool to look round the
Hollyoaks set and I would meet
the cast, I was buzzing. I went
in Calvin's car to Liverpool
(some cool car that he's got I
can tell you).
Ricky showed me round the
Hollyoaks set, which was being
filmed the whole time, he then
said I hear you like Andy who
plays Rhys, I was like errrm, no
comment, I you are all fit lol...
Calvin introduced me to Newt (Nico
Mirallergo), then Rhys spoke to
me and I was all googly eyed. We
had some pictures taken before
going for dinner. After dinner I
went and watched Calvin do his
scene. Calvin then surprised me
and told me that I have been
given a part in the pub scene
with Rhys and Gilly, I was like
WOW, I was given my script and
asked to learn my lines ect
while I was in make-up. I had to
flirt with Rhys (not a difficult
job for me), Rhys rubbed it in
because he knew I liked him,
when we went off set the
cameraman asked for pictures of
us both, Rhys was going in for
the kiss and then he fell and
the cameraman went we might have
one of it looking like your
going to kiss lol. Then there
like, keep in contact ect' and
hopefully see you back here one
day.
I spoke to the director, he said
he was impressed and that I was
easy to work with ect' so you
never know I could be a regular
one day lol... After my scene we
ended it off with a bit of me
waiting in the pub and then the
lovely sexy Calvin came in the
pub in his uniform, it was an
image to die for, I was like
OMG, OMG, I am going to faint,
he looked soooo fit, but I love
them all, they are all
brilliant. Hopefully we will
stay mates and stuff and I'll
see them on set again some day.
I have heard from Andrew (Rhys),
Anthony (Gilly) and Sonny (Josh)
since I have been back.
I cannot
tell you all what happens you
will just have to watch
Hollyoaks, I will let you know
when it goes out on TV. I really
did have the best day of my life
and I would like to say a big
thank you to everyone involved
in making my wish come true (you
can see some more pictures from
my day on my picture link). To
act on Hollyoaks was on my wish
list in my book. I can now tick
that one off. But I would love
to do more acting on Hollyoaks,
I loved it so much. I met some
of the nicest people, I cannot
remember all your names so thank
you to everyone. Paul Young, Jay
Morris, Ricky, Andrew, Nicole,
the camera crew and all on
Hollyoaks for giving me a
brilliant day.
January 2009:
I have
got to attend the pre-operative
assessment clinic tomorrow
before going on for my physio'
in the hydro' pool. This
assessment is to make sure I am
fit for my operation next week.
I just hope I don't have to have
any blood test done, the last
blood test I had did not go down
so well as the nurse had
problems trying to find a vain
to take the blood.
Things still the same with my
back and I have been wearing my
back brace to try and help with
the pain, my physio', "Jane",
wants me to see about having a
new back brace made so that I
can wear it when my back is
really bad like it is at the
moment.
I have got the date for seeing
Mr. Henry (27th January) over
the tumours growing on the back
of my knees and not being able
to wear my knee braces due to
the braces rubbing on the
tumours. My mum and I ended up
spending most the afternoon at
the hospital, the nurse who did
my pre-operative assessment was
really nice and we were chatting
about Hollyoaks (she likes it
too) and after doing all the
different test that she needed
to do, she decided that I should
go for a chest x-ray and blood
test. "Yes", I had to have a
needle, I thought I was going to
get away with it this time. But
I am never that lucky. She also
decided that it would be better
if I came in hospital on Monday.
Before going down for my
operation I was told I would
need a needle, which is no go
with me unless they put some
magic cream on the area first,
one of the nurses said that it
had not been prescribed for me
and unless they could find a
doctor to prescribe it I would
have the needle without. My mum
said that she would go down to
the children's ward and get some
for me, mum had not been gone
above 5 minutes when the nurse
came back with some magic cream
so I texted mum to let her know
that I had got some. But that
was not the end of my
injection's, I was given an
injection to stop the sickness,
injection's to stop my blood
from clotting and "Yes" they had
problems putting the injection's
in and "Yes" I cried. The next
day I told them I did not want
the injection to stop my blood
clotting as I was able to move
about and that I would cope with
the sickness by having tablets.
I had to stay in hospital a few
nights.
My gran was in the ward over the
corridor to me and one of the
nurses off grans ward brought my
gran to see me after my
operation, which cheered me up.
My gran is still in hospital as
she is not very good on her feet
at the moment and the doctor
wants her walking a little
better with her frame before
they can let her home.
6th
January 2009:
I am
still buzzing from my trip to
Liverpool and don't think I'll
believe I have been on the
Hollyoak's set until I have
watched it on TV. Not got the
date for when it is on yet.
14th
February 2009:
My mum's
been in hospital too, she had to
have an operation on her toe,
they fused one of her toes and
had to remove one of the nerves
in her toe as it had thickened,
my poor mum is now hobbling
around with a rod sticking out
of her toe for the next six
weeks.
I am on Hollyoaks this Friday
(20th February) when Andrew Moss
and I flirt at the bar. I cannot
thank Noel Edmonds enough for
arranging for me to go on
Hollyoaks and I still can't
believe it.
13th
January 2009:
I am on
Noel’s HQ on Saturday night the
17th January at
7.30pm, you can watch Noel’s HQ
on Sky 1 virgin 121, Sky 106 and
HD 170. I am really looking
forward to meeting Noel and
being on the show. I am also in
the Sun News paper one day this
week and I think the Daily
Express on Saturday 17th
January.
A lady came and did my make-up
this morning before I had some
pictures taken for the Daily
Mirror news paper, so I know I’m
going to look ok on them lol…
18th
January 2009:
Mum got a
call to say our car would be
with us in 5 minutes. When we
arrived at the studio's our car
was met by Paul Young and Jay
Morris, People had already
started to queue to come in and
watch the show and the show was
not for another two hours.
I felt
like a star as both Paul and Jay
kissed me on the cheek and took
me inside. You can imagine my
surprise when I was shown my own
dressing room with my name above
the door. The room was
huge and
had a TV, video,
toilet,
shower, fridge (which was filled
to the top with drinks), Noel
was in the next dressing room to
mine.
Paul,
Jay, Nicole, Ross and lots of
other people kept coming in to
make sure we were all ok and
asking if we wanted anything. I
was then taken to make-up, I had
to look glam before going on TV.
We were then seated in the
Studio ready for the show to
start, I began to feel nervous
and my hands were shaking. I was
first on so I was then taken
back stage ready for Noel to
call me on. click on the picture
of Ricky and me and sit back and
enjoy.
Ricky and Me
Click picture to watch video.
After the
Noel's HQ had finished everyone
who had been on the
show
including the stares and crew
all went back stage for drinks
and food. Neil Fox came chatting
to me and congratulated me on
raising so much money. I got
lots more hugs of Ricky. I
could not
believe it when Noel said Ricky
was here too as you will have
seen by my face. Ricky is
such a
nice
guy and gives really nice hugs.
I chatted with Keith Chagwin and
Noel, mum asked Noel who the
Banker was and he said "sorry'
can't tell you, not even for
you" lol. We had a really nice
night and everyone was so kind.
I had something money just
cannot buy, a part in Hollyoaks
and I would like to thank Noel
Edmonds and Ricky Whittle and
everyone involved in making my
dream come true.
I have had lots of feed back
from people saying how I have
inspired them to do something
for charity, if everyone did a
little something the world would
be a much better place.
20th
February 2009:
Yesterday
mum and me went to London where
I did a fashion shoot for the
Daily Mirror, my hair and
make-up was done by CB (Clair)
and I was styled by Oriella
Paganuzzi, I had a brilliant
time. My pictures were taken by
Emma Cattell who made me feel so
relaxed when taking my photo.
March
2009:
I went to
see Mr. Neil Oxborrow, who is my
spinal surgeon at Hope Hospital
in Manchester about my back. The
operation I had on my spine in
2005 did not go without it
problems for Mr Oxborrow as many
of you will have read in my
earlier blog. But recently the
pain in my back has been getting
worse and one of my hands has
started to feel cold while the
other feels warm. Mr Oxborrow
said I would need to talk the
problems with my hands over with
my Neuro’ surgeon, but was
concerned about the pain that I
am getting in my back. Having
put one of my last x-rays up on
screen, he was a little
concerned about one of the
screws to the top of my rods and
the fact that my spine is
curving above where he went up
to with the rods. After having a
chat with him it was decided
that I go back in the back brace
to help with the pain when I am
in college and when the pain is
really bad. He mentioned doing
further surgery to put more rods
on spine taking them all the way
to the top. He said the surgery
comes with risk as I have so
many tumours on my spine and
that he would have to do surgery
from both the back and front of
my chest. He wants me to ring
him in May and let him know if I
want to go ahead with the
surgery. If I decide not to go
ahead he will discharge me as
there is nothing more he can do
for me. I really do not know
what to do, the pain really
kills me at times, but the
thought of another big operation
also worries me. If I do decide
to have the operation I will
need to have lots of other test
and scans and I would only allow
Mr. Oxborrow to do the surgery.
Before going home with lot to
think about Mr. Oxborrow sent me
for a full spinal x-ray so that
he could view both x-rays. I had
to wear one of those silly gowns
that never fit or fashion up at
the back, Phil, one of my
favourite ambulance drivers had
arrived to take me home and seen
me in the gown, how embarrassed
was I. lol… I knew I would be in
for some stick off him. But
being a girl I can take it and
will give as good as I get lol.
17th
March 2009:
I saw Dr.
Huson a couple of weeks back, we
spoke about the operation that
Mr. N Oxborrow asked me to
consider having. Dr. Huson was
also going to London for a
meeting with Dr. Ferner she was
also going to have a chat with
Dr. Ferner about me and see if
she would like to do a video
link in clinic. But Dr. Ferner
said she would like to see me in
person so I will have to go to
London at some point to see Dr.
Ferner.
I received some notes from Mr.
Oxborrow and in it he says that
he is a little concerned about
the appearance of the top screw
and wondered whether that some
progression of my NF had caused
scalloping around the top
pedicle screw. He was going to
have my x-rays reviewed at the
x-ray meeting.
I have also started being sick
again and cannot keep anything
down.
17th
March 2009:
Today I
was in the Daily Mirror, I was
given a full centre page spread.
The Mirror had arranged for me
to do a photo shoot to help me
with my modelling and TV work. I
was contacted by a number of
magazines who also want to cover
my story after reading about me
in the Mirror.
23rd
April 2009:
I
have just spent the last four
weeks in hospital due to
continues sickness. Mum took me
to see an out of hour’s doctor
who gave me an anti sickness
tablet that melts under the gum
but they did not help, so I saw
one of the GP’s at my surgery
two days later who said I was
mildly dehydrated and gave me
some Dioralyte and said I would
need to come back if things got
any worse, I could not manage to
keep the Dioralyte down so mum
and dad took me back to the out
of hour’s doctor two days later,
the doctor asked my dad to take
me to the A/E department and
that he would fax them to say I
was on the way.
When the doctor at the hospital
saw me I was put on a drip and
told I would have to stay in
hospital for a few days.
During my four week stay in
hospital I had some
investigation’s done to try and
find the cause of my sickness,
the first test they did was an
endoscope, this was done by
using a narrow flexible,
telescopic camera, which I had
to swallow and then they passed
it down my oesophagus and into
my tummy. I kept being sick
while they were doing the test
and they kept having to vac the
sick away. The results showed
that I had some inflammation to
my duodenum. But they did not
think this was the cause of my
sickness. The doctor said that
he had taken a biopsy (a small
sample of tissue) for testing. I
had a sore throat for a while
after the test.
I also had
an ultrasound scan of my tummy
this just showed some tumours
but they were really small and
again they did not think they
were the cause of the sickness.
I also had a Brain scan, which
confirmed I have a brain. But
they found nothing to worry
about on the scan, which was
good news. I also had a MRI scan
on my tummy, which showed more
tumours than the ultrasound scan
did and the doctor hopes to talk
with my NF doctor (Dr. S Huson)
to see if there is a possibility
that one of the tumours are on
nerve that is making me sick.
One of
the doctors suggested that I am
making myself sick, my mum went
mad with her and told her to ask
the nursing staff who had been
sat with me when I had been
being really sick and one of the
doctors had also been in the
room a number of times when I
had been vomiting. Mum asked the
doctor if they would do a
gastric study but she just said
what did we hope it would show
and my mum said, the answer to
why she is being so sick. But
she refused, saying she did not
see the point in having the
test.
My mum continued to ask if they
would just do the gastric test
and in the end they the doctor
agreed to arrange for me to have
it.
Five weeks on and I am still
vomiting over 1000ml a day back,
it’s not that I don’t want to
eat and drink, I do, it just
does not want to stay down for
some reason.
27th
April 2009:
Now for
some good news! On Friday I went
to Edinburgh as I was nominated
by Linda and Phil from the
Didsbury Rotary Club, for a
Rotary Young Citizen Award and
was one of the five winners to
receive the award. It was a long
drive
but we
stopped at the service station
for food and drinks, we didn’t
arrive in Edinburgh until after
4pm. On the evening we arrived I
went to see McFly in concert
with one of the other winners
(Leanne), Leanne’s parents and
my mum. I had to be at the Corn
Exchange for 6.45pm. When I
arrived at the venue I was given
the surprising news that I was
to meet the boys from McFly.
Both Leanne, her parents, my mum
and me were taken round the back
of the venue and introduced to
the boys, they were great and
after giving us a big hug they
chatted about why we had been
given the award, they were
shocked when they were told how
much I had raised. We then had
some picture taken before going
to watch the boys on stage with
all the other girls screaming in
excitement. I was surprised when
McFly mentioned me on stage and
everyone clapped and cheered me
when McFly had finished talking
about me. On the Saturday
morning we had to be at the Corn
Exchange for 10.15am so that I
could have a quick interview
with Konnie Huq who was
presenting the awards live on
the BBC News 24. Konnie was a
presenter on Blue Peter for ten
years before leaving the
show last year. We arrived at
the Corn Exchange just in time
thanks to Linda’s good driving
and my good navigation system
around Edinburgh, which was a
nightmare to drive round due to
all the road works they have
going on at the moment. I met
with the other winners before
being sat on stage ready for the
awards to go out live on the BBC
News at 11.30am.There were over
2000, Rotary members from all
over the world in the audience,
I was a bit nervous as I had
just been sick before going on
stage and was worried in case it
started again while I was on
stage. I was the last winner to
go up and Konnie asked me a few
questions and showed a short
film about me as Eve had been to
film me in hospital the week
before and had also filmed the
girls from Wish Upon a Star and
one my doctors, Mr. Neil
Oxborrow. I managed to make the
audience laugh a couple of times
with my answers, which is always
a good thing. I received a
lovely glass trophy and a
certificate and I am told I have
also got £500.00 to come to me
for my charity, which will go
towards my target. After the
ceremony we had lunch and some
more pictures taken on stage.
Lots of people kept coming up to
me and congratulating me
on my award and some gave me
money towards my next target,
all in all I was given £80.00
for my charity. One man even
gave me his business card and
said he may be able to help get
my book published, I have
emailed him today so we will
see. I would like to say a big
thank you to: Mike, Sue, Ann and
the other lady who gave me money
for my charity.
Then mum and I went into
Edinburgh to do some shopping
while Linda and Phil went back
into the afternoon Rotary event.
While mum and I was out I saw
the Top Gear presenters, Richard
Hammond, Jeremy Clarkson and
James May, mum asked if I could
have my picture taken with
Richard but this woman said “No”
but I still took some of Richard
and Clarkson. Linda than rang my
mum
to say she was on her way to
pick us up so that we could all
go for tea before heading back
to the Corn Exchange to watch a
concert. It was a Scottish
Variety Performance. I had
arranged to meet Leanne (one of
the other winners) at the
concert and we all sat together.
I must say we really enjoyed it.
The show finished about 11pm, I
was shattered by the time we got
back to the guest house.
2nd May
2009:
I had the gastric emptying study
done yesterday and pleased to
say I managed to drink the stuff
they gave me and was only sick a
little bit.
23rd May
2009:
The
hospital phoned on Tuesday to
say the doctor had looked at the
gastric emptying results that I
had two weeks ago and wanted to
see me to discuss the results.
Mum and I were asked to attend
the hospital the next day. After
sitting with the doctor and her
asking if the sickness had
stopped, I explained that things
had settled a little, but I was
still being sick everyday. The
doctor then told me that the
results showed that I had severe
form of gastric emptying and
that any food I eat is not
moving as fast as it should,
which is why I am being so sick,
on top of that the doctor said I
have so many tumours in my tummy
that they are not sure if any of
the tumours are on a particular
nerve that is making things
worse. They want me try
Erythromycin, one tablet four
times a day for four weeks (this
is normally used as an
antibiotic, but in my case it’s
being used to make my food move
more quickly), if it helps I
have got to continue taking it
for another four weeks. But if
it does not help after the four
weeks, I have got to stop taking
it and try this other tablet for
four weeks (can’t remember what
it was called). I go back and
see the doctor in eight weeks
and if things are still the same
they will talk about trying
hypno’ therapy, if that does not
help I may have to have my
stomach removed.
The doctor said they are running
out of medication to try, which
is why they think the tumours
maybe making things worse. Let’s
just hope these tablets work and
I don’t have to go down the path
of having my stomach removed.
July
2009
I have
passed my exams and I have been
excepted into Chester University
to study TV/Radio Media, mum and
dad said they are very proud of
me as I am the only one in the
family to ever have gone to
University, which made me feel
really happy.
2nd
November 2009:
I have
now got the results of my brain
scan and chest x-ray that I had
in September. The findings on
brain scan were as follows:
There are multiple small nodules
in the subcutaneous soft tissues
of the head and neck, and the
deep facial spaces, and further
in the medial and superior
aspects of both orbits. There
are possible small mass-like
nodules within the cavernous
sinuses. There are further
multiple bilateral lesions
affecting the exiting cervical
nerve roots and cervical
plexuses. The appearances are in
keeping with neurofibromatosis.
I had a normal cerebrum,
brainstem and cerebellum for
age. Normal ventricles and basal
cisterns. Normal midline
structures and craniocervical
junction. Normal major
cerebrovascular flow voids.
Comments: multiple head and neck
subcutaneous soft tissues and
deep facial space and orbital
extraconal, cavemous sinus and
cervical nerve roots and
cervical plexus neurofibromas.
The appearances are in keeping
with neurofibromatosis. No
intracranial large mass or
hydrocephalus.
9th
November 2009:
University is going good, hard
work but good fun too. I am on a
billboard pictured with my
Ronnie gran, the poster
has been put on three different
bus stops arround Manchester.
Cadbury's Wispa Gold asked
people to write in and tell them
about someone they love and that
they would pick so many of the
entries and put them on
billboards around the UK. Mine
was one of the ones chosen.
17th
November 2009:
I
went to see Dr. Watts last week
over the sickness, mum spoke
about me seeing the doctor in
Liverpool who is doing
pioneering treatment which
involves a special pacemaker
being attached to the stomach,
which had been successful on
another young woman who has “Gastroparesis”,
she did not think I would be an
ideal candidate for the
treatment due to the tumours in
my tummy. But my GP said she
will send me to see him if want
to get some advice off him, I
feel I am back to square one
this week with the sickness and
just feel really drained at the
moment, this week has been
particularly bad with the
sickness. The doctor also spoke
to me about the brain scan
results and she is going to show
the results to the neuro surgeon
due to the following “possible
small mass-like nodules within
the cavernous sinuses and the
further multiple bilateral
lesions affecting the exiting
cervical nerve roots and
cervical plexuses”. They are
going to compare the scan with
the last one that I had in
April and see if these latest
results are something new.
I have just spent another week
in hospital due to this
sickness, but I also had an
infection this time too.
I had been to Chester with Uni’
and really did not feel very
well and phoned my mum who told
me to go and see the nurse on
campus, which I did when I got
back, the nurse was just leaving
but said that I did not look
very well and she phoned the GP
who I normally see when I am at
Uni’, the receptionist told her
they had no appointments and
that she would have to ring the
out of hours service, which the
nurse did only to be told she
was to ring the GP back as they
were still open and should still
see me. After having no further
look with the receptionist I
decided to wait until the
surgery was closed and ring the
out of hours doctor up again.
By the time I got to see the out
of hours doctor I was feeling
really poorly, he had a look at
me and sent me straight to
hospital, I phoned my mum and my
brother (Chris) and my mum and
Chris met me at the hospital, I
was kept in and put on a drip to
get some fluid back into me.
2nd
December 2009:
I am
feeling much better after my
recent hospital stay. I was at
the MRI last week seeing the
doctor over my knees. He said
that I need surgery on both
knees and that they will try
keyhole surgery first, if I
agree. I asked if I could think
about it so he’s given me three
weeks to make my mind up. He was
really good looking and I said
if he does it than I will have
it done lol… But he is the reg’
and only assist in the
operation's. I asked him to put
a comment in my NF book for my
NF doctor and told him that
doctors normally include their
mobile number so the NF doctor
can ring them if she needs too,
he started laughing lol, well,
it was worth a try lol…I go back
and see him on the 21st December
'09. The operation that I need
is realignment surgery to both
knees.The
doctor was really good and
explained that the kneecap
normally sits in a groove in the
end of the thighbone called the
trochlea. When the knee bends
and straightens the patella
moves up and down in this
groove. This movement is termed
‘patellar tracking’ and if the
patella sits centrally on the
femur and does not deviate then
no symptoms arise.
But if the patella has excessive
outward or lateral forces then
it can move in
an abnormal way causing
discomfort and the feeling of
instability. In severe
situations the patella can even
dislocate from its correct
position and pop out of the side
of the knee. This is why both my
knees keep giving way.
December 2009:
I was invited to 11 Downing St
in London to meet The Chancellor
of the Exchequer, Rt Hon
Alistair Darling MP. I received
the Diana Gold Award along with
nine other young people who had
all won the Diana Award over the
past ten years and the gold
award was to mark the tenth
anniversary of the Diana awards.
Over the last ten years the
Diana trust has awarded 27.000
awards to young people. The
awards were on TV.
Charity Ghost Night:
The spook night was really good,
It’s hard to believe but lots
did happen and when the channel
M guy (Ben) was filming a fire
extinguisher came flying off the
wall but they could not show it
as a couple of people swore in
shock, one guy got scratched on
the back of his head, which must
be 4ins + in length, we had some
pebbles slung towards us and
other people experienced some
things too. Click on the picture
to watch a clip from Channel M
News.
January
2010:
I
received a phone call to say
that I am carrying the MRSA bug
and that I have got to be
treated with two different
creams one that go up my nose
and I also have to bath in this
liquid soap every day for the
next three weeks, I have got to
have three clear swabs before
surgery can now take place.
MRSA stands for Methicillin
Resistant Staphylococcus Aureus.
Staphylococcus Aureus is a
bacterium commonly carried on
the skin.
My mum asked the doctor how I
had manage to pick MRSA up and
seam to think it possible that I
picked it up when I was last in
hospital in November.
I have had a bad few days with
the sickness and had to have
some fluid via a drip and an
anti sickness injection given at
the hospital.
Doctor Watts had been told about
my recent trip to A/E due to the
sickness and she's asked to see
me again next week, I was not
meant to be seeing her again
until August so I am not sure
why she wants to see me so early
really.
I went to hospital this week to
see the doctor over my continued
sickness as I was taken into
hospital on Mothering Sunday due
to the sickness being so bad.
Mum took some pictures of my
stomach with her as my stomach
keeps swelling up like balloon
and going very hard.
The doctors want me to have a
Gastric emptying study done,
this procedure will be done by
the nuclear medicine physician
using radioactive chemicals that
will measure the speed with
which my food empties from my
stomach and enters the small
intestines.
When I have the gastric study
done I will have to eat a meal ,
normally scramble egg on toast
is given, which will be mixed
with a small amount of
radioactive material. I will
also be given some fluid to
drink, which will also have a
small amount of radioactive
material. A scanner will be
placed over my stomach to
monitor the amount of
radioactivity in my stomach for
several hours after I have eaten
the meal. As the food empties my
stomach, the amount of
radioactivity in the stomach
should decrease. The rate at,
which the radioactivity leaves
my stomach will reflect on the
rate the food is emptying from
my stomach.
I have
received a letter from
Buckingham Palace, when I opened
it, inside was an invite to the
Queens Garden Party on the 22nd
June for both my mum and me. So
I have got something nice to
look forward to. The letter
states that we must wear a dress
and a hat and unfortunately we
cannot take any pictures as they
will not let you take your
camera in to the grounds of the
Palace.
This is our
invite,
but not the tickets.
I went along to meet Mrs Kirsty
Craig (Daniel Craigs step mum)
in Chester. This is because not
so long ago, I won a business
connection award and Santander
Community Award. This was
because the style of work that I
have been doing and the skills I
have used are to a business
standard. And due to do doing a
lot of community work I was
awarded the Santander award. I
was unable to go to the event on
the Friday. This was because I
was in Ireland at the time. So I
met Kirsty on the Friday. Please
see the picture below of me
reserving the business
connection. I was happy and
honoured to reserve both of
these awards.
I went to
see Dr. Watts last week, Dr.
Watts is the doctor that I see
for my gastroparesis, I have not
seen Dr. Watts since I was in
hospital as I normally see one
of her registrar’s, anyway Dr
Watts was really nice and we had
a chat about how things had been
going over the past few months
and she gave me the results of
both my last breath test, which
had both come back clear. So I
am not allergic to milk and I
don’t have an infection in
stomach.
After
telling Dr. Watts how my
sickness had been she said that
it was important that I came
into hospital when the sickness
gets really bad, I told her that
I felt silly coming into a busy
A/E department just with
sickness when there are people
who are bleeding to death sat in
the waiting room.
Dr. Watts said that it was very
important that I did come into
hospital as if I got too
dehydrated it could be very
dangerous for me with my
condition and that if it made me
feel any better that she would
write a letter for me saying
that I suffer from a severe form
of gastroparesis and that she
(Dr. Watts) as asked me to come
into A/E department when the
sickness gets bad and that she
must be informed that I am in
the hospital.
Dr. Watts is going to send the
letter to me for me to keep. I
have got to go back and see her
in three months.
I also saw Dr. Sue Huson this
week, if you remember Dr. Huson
is my NF doctor and as I had not
seen her for a while she said
that she needed to see both my
mum and me. We were running late
like normal due to my transport
being late, which was not the
drivers fault, I am really
grateful that they take me to
all my hospital appointments.
I am now
home after having two weeks away
with my parents,
Unfortunately I still had a few
bouts of being sick and it was a
case that I carried a paper bag
around with me, I still had a
nice time while I was away but
unfortunately I took poorly on
the flight home, the stewards
asked over the speaker if anyone
with medical knowledge was on
the flight, a nurse came
forward, I was put on oxygen for
the rest of the flight home and
given aspirin to thin my blood.
The pilot asked to be kept
informed as he was going to
divert to the nearest airport so
that I could be taken off the
flight and taken to hospital but
I was ok, they arranged for the
flight to be met by a paramedic
who came on board the flight and
carried out my observations he
then rang for an ambulance to
meet the flight and take me to
hospital, my mum came with me in
the ambulance. I spent the rest
of the day in hospital with my
mum and dad by my side. I am
much better now, they think that
I may have had a blood clot but
they are not sure.
I have now got the letter off
Dr. Watts to take with me to
hospital when my sickness gets
really bad, I just hope I never
need to use it.
Mr. Oxborrow said I was reviewed
at there x-ray meeting and it
was felt that surgery was
probably not the way ahead at
the moment. Mr. Oxborrow and I
agreed to simply observe my
spine for the time being. The
plan now is to see Mr. Oxborrow
in nine months with a further
x-ray on arrival if things have
got any worse at this time I may
have to re think about having
the surgery. But this would be a
very big operation with no
guarantee of it helping with the
pain. If I get to the point that
I can't cope with the pain he
will look at things again.
I wanted to know when I decide
to have children will I be able
to have a normal pregnancy and
delivery or will the titanium
rods make a difference to how
things go. Mr. Oxborrow said
that I would be able to have a
normal pregnancy, but I may find
my back is more painful, which
is not uncommon for any woman
having children, he did not
think that I should have any
problems carrying a baby to full
terms. He did say that he was
unsure about me having an
epidural due to the tumours on
the spine. He did not think the
pain killing tablets that I am
on would be safe to take during
pregnancy. If when I am ready to
start a family and my back does
worsen I can always elect to
have my delivery by caesarean
section to prevent more strain
on my back.
I went to see Dr. Lieberman
(pain specialist) in regards to
my treatment he is not going to
mess about changing any of my
medication as I am coping
reasonably well on what I am
taking. The only other thing
that was mentioned was the
subject of me having children
and taking Gabapentin in the
future. Dr. Lieberman said I
will have to stop taking the
Gabapentin but if the got really
bad that I could take Morphine.
The safety of taking Gabapentin
during pregnancy has not been
established but my doctor does
not recommend me to take it
during pregnancy. When the time
comes for me to start thinking
about having a family he will
talk more about how the Morphine
will work for me.
I went to see my gastro doctor
this morning (Dr. Watts), Dr.
Watts is being really nice now
and we chatted for a while, I
explained that things were not
much better and that I had not
noticed any benefit from my
weekly Hypnotherapy sessions.
But as I said to Dr. Watts I
will give anything a try and I
still have six weeks to go with
my Hypnotherapy. Dr. Watts
explained that mine was a
complicated case due to my NF,
which is why I am seeing her and
not any of her Reg' doctors.
when I first met Dr. Watts over
two years ago now, I was not
keen on her. When I was in the
hospital back in April 2009 (I
was in hospital for four weeks)
Dr. Watts came into my room and
shouted at me for doing my
college work, which still needed
to be done whether I was in
hospital or not. But now Dr.
Watts is really nice
and she mellowed so much since
our first meeting.
Imagine having a stomach flu
that never goes away; endless
bouts of nausea and vomiting up
undigested food, bloating of the
stomach and food washing up into
your mouth. That is what
gastroparisis is like for me.
One minuet my tummy is flat the
next I look a so I am nine
months pregnant
Gastroparesis, also called
delayed gastric emptying, is a
medical condition consisting of
a paresis (partial paralysis) of
the stomach, resulting in food
remaining in the stomach for a
longer period of
time than normal. Normally, the
stomach contracts to move food
down into the small intestine
for digestion. The vagus nerve
controls these contractions.
Gastroparesis may occur when the
vagus
nerve is damaged
and the muscles of the stomach
and intestines do not work
normally. Food then moves slowly
or stops moving through the
digestive tract.
Dr. Watts
wants me to try Colofac, one
tablet three times a day for the
next six weeks to see if it
helps with the bloating. Colofac
is normally used for IBS
(irritable bowel syndrome), I
also had to have a blood test
"I'm terrified of injections.
They hurt like hell ! The
syringe reminds me of a medieval
torture instrument, and the
needles are far too long!" My
mum came in the room with me and
I think I must of almost broke
her fingers as I squeezed her
hand that hard, "sorry mum". Dr.
Watts said she would write to me
if there was anything wrong with
the blood results.
On the 17th March my mum and me
were invited to London for the V
inspired awards. The venue was
being held at the indigo2 at the
O2 arena. It was great to meet
so many inspiring people and
everyone was really nice. Leigh
Frances was at the event and in
fact it was Leigh who was
announcing the spirit award
winner. He was so funny and had
the audience in stitches. I
could not believe it when Leigh
announced that I was the winner.
I won a trophy (really heavy)
and £1K towards any project that
I am doing for charity.
I had to go and see Mr. C Duff
who is the plastic surgeon, we
had a chat about some of the new
tumours that I have and it was
decided that they should be
removed, he was going to do the
operation at the end of April
but I have got a charity event
and I don’t want to let anyone
down so I said I will have the
surgery after my event.
What is a
PET Scan?
A PET Scan, or Positron Emission
Tomography Scan, is an imaging
technique that allows physicians
to examine many organs of the
body and is helpful in
diagnosing many diseases, such
as cancer. Other scans such as a
CT scan or MRI scans , only show
organ structure, where a PET
Scanner shows organ structure
and function.
What
is
Flat Foot?
Flat foot is a condition where
the longitudinal arch or instep
of the foot collapses and comes
into contact with the floor.
Flat foot can also be caused by
fallen arches. Wear and tear can
weaken the tendon that is
responsible for shaping the
arch. Fallen arches can also be
caused by injury. The treatment
for flat feet needs to be
evaluated by a doctor or health
care worker to determine the
treatment.
The doctor was not sure if my NF
had anything to do with my flat
feet, he is sending me for
physio' and as I mentioned I am
having shoe inserts fitted to my
shoes.
If you have foot pain and think
you may have flat feet, try the
following test, which help
determine your arch type.
-
Foot print test
when your feet
are wet:
look at your
footprint on the
floor. The front
of your foot
will be joined
to the heel by a
strip. If your
foot is flat,
then the strip
will be the same
width as the
front of the
foot, creating a
footprint that
looks stretched.
With a normal
arch, the strip
is about half
the width of the
front of the
foot. If you
have a high arch
a thin strip
will connect the
front of the
foot with the
heel.
-
Another test you
can do is:
put your shoes
on a flat
surface and view
them at your eye
level from
behind. See if
the soles of the
shoes are worn
evenly. A flat
foot will cause
more wear on the
inside of the
sole of the
shoe, especially
in the heel
area. You will
notice that the
shoe will easily
rock from side
to side. A flat
foot will also
cause the upper
part of the
shoes to lean
inwards over the
sole. Both shoes
should wear
about the same
way.
Yesterday I had to go to a
meeting in Manchester and my mum
met me at the Royal College of
Manchester on Oxford Road, we
were just stood by the road
deciding which way to go as I
was early for my appointment so
we had decided to go for a
drink. The next minute this
young man was knocked of his
bike by a woman coming out of a
side road, it was very upsetting
to see. Mum gave first aid while
I called for an ambulance and
directed the traffic. Another
young man joined mum who said he
was in his first year training
to be a doctor so he also check
him out. He was very lucky
to have only hurt his leg, he
was wearing an helmet which
saved any head injury. The young
man was talking and told us his
name was Tom, mum then phoned
one
of his friends and told them
what had happened and asked if
they would meet the ambulance at
the Manchester Royal Infirmary.
about an hour later the police
rang my mum to ask if she would
do a statement as to what
happened, the police said Tom
had been really lucky and had
got away with just a leg injury.
It was very upsetting to see but
just so pleased that Tom was OK.
23rd June
2010:
Yesterday
I went to the Queens Garden
Party with my mum, which was a
great experience. When I woke up
I was really excited I never
slept well all night. I tried on
like 6 dresses as I had bought
so many and 5 minutes before the
photographer came I got changed
again.
When the
Bentley and David (my Chauffeur)
arrived, I was so excited and
when I seen how beautiful the
Bentley was, I was made up, I
was so happy and felt privileged
that someone had organised this
ride for me. I loved the smooth
ride there and back, and it was
really comfy. I think I might
invest in a Bentley ha, ha,.
When I got to the garden party I
was made known and taken
through, after several pictures
were taken by the press. I went
through the Buckingham Palace
gates and into the garden, I had
some lemon juice and lined up
for some butties and cake. The
food was lovely and the cakes
were lovely too. I enjoyed the
iced coffee. I then lined up and
waited to see the Queen and the
Duke go past,
it was a
really hot day,
Two bands were playing
throughout the day and that was
awesome and so relaxing. I sat
back in the sun catching a sun
tan near the lake eating a
lovely ice-cream. My day was
amazing and I am so happy I was
invited. David my chauffeur was
such a nice guy and very
friendly and he helped to make
my day special too.
The time table for the day ran
as follows:
At 3.00pm the royal gates
opened, 3.30pm tea was served in
the main tent, which were
cucumber sandwiches and ham
sandwiches along with some very
fancy cakes and iced coffee, tea
or juice.
Around 4.00pm the National
Anthem was played to announce
the arrival of Her Majesty the
Queen and members of the Royal
family.
The guest to the garden party
formed two lanes to allow the
Queen and members of the Royal
family to move through the
guest. While the Queen was
taking tea in the Royal tent my
mum and me went and sat by the
lake eating an ice-cream. At
about 5.50pm the Queen and
members of the Royal family
departed and the National Anthem
was played. After everyone
clapped the Royal family we went
back to the lake, it was a
lovely day and one that both my
mum and I will remember for a
very long time.
I am really grateful to the
Manchester Evening News for
arranging for me to travel by
Bentley and to Bentley for
agreeing to take me.
4th
October 2010:
I have
enrolled on a cach course at the
local college where I am
applying to be a teaching
assistant, it is a one year
course and I now have a
placement at my old high school,
so hopefully I will pass the
course and become a teaching
assistant.
November
2010:
My
charity spookathon went really
well and I would like to thank
the following people for
supporting the event. Craig
Gazey (Graham from Corri'), my
ambulance drivers, friends and
family The Manchester Paranormal
Team, Paul (09 Management), Will
Hayes (Candidate 23) and the
M.E.N readers for supporting my
event.
I would also like to thank the
person who very kindly sent me
£200.00 for the charity. I would
have liked to have dropped you a
line but you did not include
your name or contact details,
but I am truly grateful to you.
"Thank You".
I have just found out that I am
the regional winner for the
Spirit Award for all round
commitment to volunteering and
will no go forward to be named
the overall winner next year.
I have also received an
invitation to the Lord Mayor's
Annual Reception on the 25th
November, this is a very special
event on the civic calendar and
something that I am now looking
forward too.
Work
starts on my book on the 17th
November and I am still keeping
fingers crossed that it will on
sale in time for Christmas.
7th February 2011:
Great news, my book is now live,
please go to my items for sale
link for more information on how
you can buy a copy of my book.
I have just found out that I am
one of the National Finalist for
the Spirit Award for all round
commitment to volunteering, I am
off to London in March with my
mum.
28th
October 2011:
I have
been very busy over the last few
months, not only with hospital
visits but with University,
fundraising, doing radio
interviews about my book, which
is still selling well.
I won the Spirit award and was
given my award by Leigh Francis,
in London. Leigh was really
funny and such a nice guy. I met
so many other young adults who
had done amazing things for
their community and everyone in
the room was a winner to me.
Great news, my book is now live,
please go to my items for sale
link for more information on how
you can buy a copy of my book.
I have just found out that I am
one of the National Finalist for
the Spirit Award for all round
commitment to volunteering, I am
off to London in March with my
mum.
8th
December 2011:
I have
had a busy month at University
and will be glad to take a rest
over Christmas. I have also been
busy getting ready for my
charity spook night, which I had
last Saturday, over 30 people
took part and everyone had a
great night, a lot of people
asked if I could arrange to have
a ghost night in a castle so I
am going to look at arranging
that next year.
I have got some really exciting
news to tell you all in the New
Year, but I have got to bite my
tongue till then.
I recovered well from my last
surgery but after my next
charity event next week I have
got to go back in hospital for
more surgery, Mr. Christopher
Duff is going to do the surgery,
he is a really nice guy and very
understanding.
3rd January 2012:
I have had a few busy weeks over
the Christmas holidays.
Mr. C Duff, chatted about the
tumours that needed removing,
Mr. Duff said he can only have
me in theatre for one hour and
he will remove what he can in
order of priority. When they
were knocking
Mr. Duff was able to remove all
the tumours, I was in hospital
two nights as I had taken poorly
and kept being sick, he said I
may be in over Christmas if
things don't settle down. But I
came out late Christmas Eve.
January
2012:
On
Saturday the 31st
December 2011, it was announced
publicly in the Queens New Year
Honours list that I am to
receive the M.B.E. The vast
majority of people recognised in
the New Years Honours list
include those supporting the Big
Society by making a real
difference to their local
community through volunteering,
fund-raising, social action and
philanthropy. I am still very
much in shock by this news so
please bare with me and I will
post more about this asp along
with links to all the press and
TV coverage that have covered
the story on me becoming an
M.B.E.
I was one of three people
receiving an Honour on the New
Years Honours list that was
invited down to London to meet
with the press. The two other
people being, Dr M Philippou,
who was also to receive an M.B.E
who is focused on helping young
people move away from gang
related crime by giving them an
incentive to be 'STARS' (Social,
Trustworthy and Responsible) and
Christopher Preddie, who
receives an O.B.E . Christopher
had devoted his life to youth
work and trying reduce crime. He
uses his own personal experience
to talk to youth groups and
prisoners about crime and the
huge impact that it can have on
your life.
My dad took us down the night
before as we had to meet with
the press really early. Can you
believe it when I say we were
able to drive into Downing St',
loads of people were stud
outside the gates watching as we
drove in and parked up while the
police searched our car to make
sure we were who we said we
were. It was all very exciting,
we were then showed where to
park our car at the back of 10
Downing St'. We were showed in
to this large room (Chambers)
and given drinks and
congratulated by members of
staff in the room. My mum and
dad sat behind me and I was told
to sit in the middle at the head
of this large table with the
other two people who had also
been invited told to sit at the
side of me. The door opened and
about 30 people from the press
came in and sat round the table,
they were each given notes as to
why we had been given the
honours and we were told to say
a little bit about the work that
we do and at the end they were
allowed to ask questions. I was
asked to go first, I spoke for
about 10 minutes just telling
them about the charity and why I
felt it was important to me,
then it was Dr. M Philippou's
turn, Dr. Philippou was one old
type school teachers and took us
back to when she was a young
girl at school, after 35 minutes
of her talking they had to ask
her to finish, but she still had
a lot more to say and carried on
for a further 15 minutes, in the
end they had to explain that
they were running out of time
and that Christopher still
needed to say why he had
received an honour. At this
point she did pass over to
Christopher who then spoke for
about 10 minutes.
The press asked if I was the
youngest person to receive the
M.B.E and they were told that I
was the youngest person this
year. After 15 minutes of
answering questions we were each
interviewed separately. When I
got home I loads of TV and radio
interviews, I was on the ITV
main news, local BBC North West
News, Granada News, ITV Main
News and a few radio interviews
as well as being in the press, I
even made front page news of the
Manchester Evening News. I hope
by receiving the M.B.E it will
help my charity work as the
children that I help really
deserve their wishes to be
granted, they each spend a lot
of time in hospital having
painful treatment. I have been
one of them children to spend
months in hospital and knowing
my wish was going to be granted
really helped me. I still attend
hospital frequently, I still
have to have painful treatment
and the older I get it does not
get any easer for me, but
knowing I can help other poorly
children helps me forget about
my hospital treatment.
I
have not got the date for when I
am to receive my M.B.E yet but
have been told I will be given
six weeks notice.
January
2012:
I went to
see Dr. Lieberman two weeks ago,
Dr. Lieberman is my Pain
Consultant, as I am coping with
my pain at the moment I don't
have to see him for 12 months,
but if my pain gets worse I can
just ring him up and he will see
me. Dr. Lieberman Congratulated
me on my M.B.E and said he will
do what he can to help me raise
some funds for my charity.
22nd
February 2012:
I have
now got my date for when I go to
Buckingham Palace to receive my
M.B.E. I still don't know who
will be giving me my M.B.E.
My mum was in hospital last week
having some tumours removed, mum
was in hospital a little longer
than expected due to her not
being so well after surgery. Mr.
C Duff did my mum's surgery, Mr.
C Duff really is the very best
in his field of plastic surgery
and I know that both my mum and
I would not let anyone else do
our plastic surgery now.
March
2012:
I went to see Mr. C Duff last
week, I saw him at St Marys
Hospital, while I was waiting to
see him I decided to have a play
in the play-pen and build a
house out of Lego, one of the NF
nurses saw me and came over for
a chat to congratulate me on my
M.B.E and to thank me for
attending the NF meeting the
week before. I went in to see
Mr. Duff, when I went in the
room Mr. C Duff smiled and bowed
as did the other doctors who
were in the room and Mr Duff
said have I got to bow to you
every time I see you now you
have an M.B.E, I laughed and
told him "No". We had a really
nice chat and Mr. Duff said the
biopsies that were done on my
recent surgery came back clear,
he also said that he was booking
me in for some more surgery in
September. While I was talking
to Mr. Duff the surgery door
opened and it was Professor
Evens, he had heard I was in the
building and wanted to say hello
to me, he joked to Mr. Duff and
asked him if he had bowed to me
yet, everyone was very relaxed
and Professor Evens told Mr.
Duff about the NF documentary
that I had done and edited
myself for part of my exams at
Uni' and spoken to my mum and me
about some treatment that they
hope to start using with people
with NF2 that will shrink the
tumours, they are still working
on treatment for people with NF1
but it's all very new at the
moment and not everyone would be
suitable for the treatment.
I am off to Buckingham Palace
next week to receive my M.B.E I
have not been told who will be
giving me the M.B.E yet
apparently I will not be told
until a few minutes before. On
the Friday I have been invited
to have lunch with the Lord
Mayor of Manchester and have
been told that the Queen and
Duke Edinburgh will be attending
the event too. I am not allowed
to take any pictures at any of
the events but we can buy
picture's that are taken of me
receiving my M.B.E that are
taken by the Palace
photographer.
As you
can imagine, prior to the formal
announcement and investiture
there was some correspondence
with myself and the
Central Chancery of the
Orders of Knighthood, the body
who are responsible for
organising the investiture. I
had to confirm that I actually
wanted the award! incredibly, I
do believe that over the years
some people have declined
receiving the award.
On the day I was allowed to take
three guest with me, which made
things easy for me as it meant I
could take my mum, dad and
brother Chris. We travelled to
London the day before as we had
to be at Buckingham Palace for
10am on the morning of the
investiture. My brother
travelled down later in the day
as he had to go to work, my dad
picked him up from the train
station later in the day.
Unfortunately, someone had
broken into our sheds during the
night which delayed us leaving
for London, Chris said that he
would short it out and told us
to get going to London as I was
also doing a photo shoot while I
was in London. On the morning we
travelled from our hotel to
Buckingham Palace by car, my
brother drove, arriving at the
Palace around 10am. We were
allowed to park our car inside
the grounds of Buckingham
Palace, two police officers
asked Chris to get out of the
car then they asked us to show
our invites and iD before being
allowed in. There were lots of
people outside and I felt really
important being allowed through
the gates of the Palace.
From
start to finish the whole affair
was like a slick military
operation and there were signs
indicating where we, the
"recipients", had to go, and
other signs indicating where the
"guest" should go. The award
recipients were escorted into a
large room to be briefed, while
our guest were taken into a huge
ballroom where the investiture
was to take place. At about
10.30am we the investitures had
a briefing from the Senior
Military Officer from Lord
Chamberlain's office. The
briefing explained the
investiture process and it was
at this time we became aware
that the Queen would be carrying
out the ceremony. During the
briefing we were all told that
on entering the ballroom we were
to wait for our surnames to be
called. That would be the signal
to move forward, turn left and
then face the Queen who would be
on a small elevated dais. Ladies
were told to do a courtesy and
Gents a neck bow, the Queen
would then pin the award on your
jacket or in my case, my dress.
There would be a short
conversation and the Queen would
then extend her hand to indicate
the end of the conversation.
That would be the cue to step
back from the dais, courtesy
again and then exit the
ballroom. What did the Queen ask
me? Well, she asked me what I
had done to raise so much money
and wished me luck and said well
done.
The Queen was really nice
and smiled when chatting to me.
After the ceremony we all went
outside to a huge courtyard
where we had some official
photographs taken. I felt like a
celebrity and did not want it to
end but sadly all good things
come to an end. We were soon
back in the car and on our way
home reflecting on what had been
a memorable morning. I still
keep asking myself "why me" and
keep thinking I am going to wake
up and it's all been a dream.
Less than 24 hours later I was
yet again in the company of the
Queen and Duke as I had been
invited to have lunch at
Manchester Town Hall. I was
allowed to take one guest with
me so I took my mum. We were sat
on the next table to the Queen
and she looked lovely in her
pink outfit. The Queen was at
Town Hall as part of her Diamond
Jubilee tour, marking 60 year's
of the Queen's reign. When I
arrived back home I had to
quickly get changed as I was at
a charity night with my friends
Emma and Kelly, I did not know
it at the time but Kelly had
arranged for me to meet Peter
Andre who was hosting the
charity gala night in Stockport.
I started to shake when I was
introduced to Peter, he gave me
a kiss and chatted with me and I
had my picture taken with him.
It was filmed for Peter Andre's
next chapter, I had a copy of my
book with me so I signed it and
gave it to Peter Andre. I also
met up with Andy Moss from
Hollyoaks who I filmed with when
I did Hollyoaks, Andy came up to
me and gave me a big hug when he
saw me and congratulated me on
my M.B.E.
30th
April 2012:
I have
had a very busy few months, I
now have my M.B.E. I am also
doing the Olympic torch on the
22nd June in Blackpool.
My book
is now on Kindle, for more
information on how you can buy
your copy on kindle please go to
my items for
sale link
ware you will find all the
information needed.
I
was also nominated to go on the
Happy list for the Sunday
Independent and was named on the
happy list. I still don't know
who nominated me, but thank you
whoever you were.
My
M.B.E charity celebration night
went really well and I raised
£383.00 on the raffle.
23rd June
2012:
Yesterday I had an amazing day
from start to finish, I carried
the Olympic torch along
Fleetwood Road, Blackpool.
My mum and I was picked up at
1pm by Melissa (who works for
BMW) and Keith (a police
officer) in a BMW and driven to
Blackpool. Before I could carry
the flame I had to meet all the
other people who were carrying
the torch, we met at our
designated collection point so
that we could board the shuttle
bus that took us to our
allocated starting point. My
starting point was Fleetwood
Road, near Warren Drive. When I
arrived at my drop off point
there were crowds of people
cheering. As I waited for the
gentlemen who was
passing the flame on to me, I
was surrounded by children all
wanting a picture taken with me.
Carrying the flame was one of
the proudest moments of my life.
It was unbelievable watching all
the children clapping and
cheering and hearing the crowds
cheering and shouting as I went
past, I was surprised so many
people turned up with the
weather being so bad.
I did struggle to carry the
torch and walk the 300 meters,
one of the police officer
noticed I was struggling and
came
and helped me, she linked my arm
and held the bottom of the torch
to help me. A Chinese man and
woman kept running out to me and
the police had to grab them
three times, pushing them back
into the crowed. It was very
overwhelming and absolutely
amazing, I really enjoyed every
minute of my day and being part
of History.
I passed the flame on to Bolton
fundraiser, Stacy Young, who set
up the charity Shades after her
brother died from skin cancer.
I am off to California to teach
some children radio production
as part of my placement and I am
going to New York to meet with
some families from the
Neurofoundation, and I will feed
back to Professor G Evens and
Chris De Winters on how my visit
went. The Neurofoundation have
also asked to see my book so I'm
taking a copy over with me.
December
2012:
This web
site is not meant to be
technical or full of medical
jargon. I'm here as a support
for you, to be a friend, someone
you can sound-off at when you're
feeling down. If you need
any advice or just want
somewhere you can meet fellow
sufferers then this is the place
to be!
While people of any age will
struggle to adjust to a life
with pain it can be particularly
hard for teenagers and those in
their early 20's. At a time when
the world should be opening up,
offering exciting things, it can
feel as if a door has slammed
shut instead. Don't dwell on
what you can't do, but
concentrate on what you can,
explore new interests you will
be amazed how much it helps.
Anyone can tell you it won't
hurt tomorrow. But I'm here to
listen while it hurts today.
I will checking my e-mail while
I am in hospital so don't worry
I will get back to you.
Thank you to all my doctors,
nurses, family and friends for
getting me through some of my
difficult times.
A new year and this year my
mission is to help one of my
doctors (Professor Gareth Evens)
and his wife (Chris De Winters)
raise money for a new charity
that they have set up called
"Children With Tumours". The aim
of the charity is to send
children with tumours on a camp
holiday, the first camp holiday
is booked for the end of August
this year. Also to provide
support to children with
tumours, including NF1, NF2 and
Schwannomatosis and their carers
through the following, with the
intention of supporting children
with all types of tumours. Every
penny raised will be going to
help these brave children.
January
2013:
it's the
start of a new year and a great
year I had last year. Being
named on the New Years Honours
list and being awarded the
M.B.E. I carried the Olympic
Torch in Blackpool and landing a
job that I enjoy.
I hope to have my second book
out later this year, so many
people have asked if I will do a
second book as they really
enjoyed reading my first book
and by reading the book it
helped them cope with NF and
scoliosis in a more positive
way.
My brother got engaged to his
long term girlfriend (Stacey)
Christmas Day, I want to send my
congratulations to them both and
looking forward to being told
the date of the wedding now.
19th
March 2013:
I went to see Mr. N Oxborrow,
who is my spinal surgeon. It was
a late appointment and traffic
was really bad, unfortunately
there was a bad accident in
front of us and traffic came to
a stand still. I came off the
motorway yearly and mum rang the
hospital to explain that I might
be late due to the accident. It
turned out that I was only 10
minutes late and when on the
clinic Mr. Oxborrow said "Hi" to
me when he saw me sat in clinic
and said that he would see me
soon and that I was last to be
seen.
I went into see Mr. Oxborrow
with my mum, after having a chat
with both my mum and me, I
explained that I had been in a
lot of pain at the top of my
back and it had been getting
worse, I also mentioned that one
of my hands were cold and the
other was warm, he did not think
the hand being cold and other
being warm was spinal related.
He brought the x-ray that had
back in 2011 up on the computer
screen, he pointed out the curve
above the rods and said the pain
could be do to pressure from
that point. He mentioned doing
more surgery by taking the rods
all the way to the top, he also
mentioned doing intense physio'
and seeing one of his spinal
pain team. Mr. Oxborrow sent me
for an x ray and said if the
spine has worsened he wants me
to have a bone scan to see how
the bones are at the top of the
spine, he is going to phone me
and let me know the results. He
is not really keen to do surgery
unless it is going to benefit
me, which is a good thing. I
have now got to wait and see if
the spine has worsened from my
last x-ray. The pain is
so bad at times that I am having
to take Ketamine, which I don't
like doing as it makes me feel
spaced out.
Mr. Oxborrow said he had now
reviewed my x-rays and that
there was no real change from
the last x-ray that I had, but
he wants me to have a bone scan
to see if there is any increased
activity at the end of the metal
work. He said that I have quite
a long instrumentation which is
quite flat and he suspects that
this is representing a stress
area at the top of my spine
where it turns into a mobile
spine.
I am having my bone scan on the
10th April 2013, the scan will
be done in the Nuclear Medicine
Department and I will be having
1. NM Bone Local Upper Limb, 2.
NM Bone Local Upper Limb, 3. NM
Bone SPECT and 4. NM CT Atten
Correct and diagnostic study.
The scan will take about four
hours and I will have to have an
injection, which I am not
looking forward too, my mum will
be with me and will be holding
her hand while I have the
injection.
May 2013:
As for
the pain in my back I had my
bone scan and I am now waiting
for the results. I'm still in a
lot of pain, I might have to
have physiotherapy to help build
up my muscles in my back. I'm
not really sure what's going to
happen, but hopefully we can
find something which helps with
the pain.
Some good news. I was awarded
the winner of the "Inspiring
young woman of the year 2013" ,
I gave a speech and was given a
standing ovation.
Dr. Huson
mentioned that people with NF
can lack Vitamin D and wanted me
to have a blood test, I only had
blood test yesterday at my
doctor's, the nurse who was
doing the blood test could not
find a vain and had to ring my
favourite nurse at our surgery
(Mary Brennon). Mary had some
problems getting blood too, but
she managed to get some in the
end and even gave me a smiley
face on my plaster lol. Anyway,
back to the hospital blood test.
Dr Huson asked me to wait in the
waiting room for my name to be
called, I hid in the Wendy house
as I really did not want another
needle, but I knew I had to have
the blood test to check my Vit'
D, I went in the room when my
name was called and the nurse
doing the test said she had to
ring for a porter and get an ice
pack for one of the blood test
as it was down as urgent and had
to be taken to the lab' right
away.
I was really tired when I got
home and I kept being sick, my
gastroparesis has flared up.
Having
MRI Scan:
An MRI scan is usually carried
out as an outpatient procedure.
This means you will not have to
stay in hospital over-night.
After the scan you can resume
your normal activities. However,
if you needed a sedative, a
friend or relative will need to
take you home and stay with you
for 24 hours after having the
sedative. A magnetic resonance
imaging (MRI) scan is a painless
procedure that last 15-90
minutes, depending on the size
of the area being scanned and
number of images needed.
Due to the strong magnetic
fields that are produced by the
MRI scanner, it's very important
to remove any metal objects from
your body, including : watch,
ear-rings, rings and necklace.
Depending on which part of your
body is being scanned, you may
be asked to wear a hospital
gown. If you don't need to wear
a gown, remember to wear clothes
without fasteners, zips and
buckles.
Some scans will involve having
an injection of contrast dye.
The dye will make certain
tissues and blood vessels show
up more clearly and in greater
detail. The dye is usually
injected into the arm during the
scan. This can make some people
feel sick but this could be the
thought of having an injection.
Needles are scary things.
The MRI scanner is a short
tunnel which is open at both
ends. You have to lie on a
motorised bed that is moved
inside the tunnel. You will
enter the scanner either head or
feet first, depending on the
part of your body being scanned.
A computer is used to operate
the scanner, which is located in
a different room so that it is
kept away from the magnetic
fields that are generated by the
scanner.
A radiographer operates the
computer, so they will also be
in a separate room from you.
However, you will be able to
talk to the radiographer through
an intercom and they will be
able to see you at all times.
Normally someone can stay with
you, but they will also be asked
to remove metallic objects.
It's very important that you
keep still during the scan to
avoid the images from being
blurred. At certain times during
the scan, you will hear load
tapping noises. This is the
electric current in the scanner
coils being turned on and off.
You will be given ear-plugs or
headphones to wear. Some
hospitals let you listen to a
CD.
You will have to fill some paper
work in, loads of questions to
answer. Most likely they will
ask for a list of your
medications, so just take a list
of your medication with you,
they also ask about previous
surgeries that you have had. The
reason for this is some
surgeries can leave metal in
your body, most surgical
implants are safe but they need
to be aware of them. I have two
titanium rods in my spine and I
have had many MRI spinal scans
so don't worry about having a
scan. Your scan will need to be
studied by a radiologist (doctor
trained in interpreting scans
and x-rays) and possibly
discussed with other specialist.
You will not get your results
from the scan immediately. The
radiologist will send the report
to the doctor who arranged for
you to have the scan.
One tip for you, if you have a
lot of back pain or headaches
take a pain reliever prior to
the scan. Laying flat for 20-90
minutes can make your back sore.
Good luck, I am sure you will
find that having a scan really
is not that bad, close your eyes
and think of something nice.
29th
May 2013:
I have
had a busy few months with one
thing and another, but I thought
you might like to hear about my
most recent achievement.
I was
invited to the Inspiring women
awards on the 17th May 2013. The
award ceremony took place at the
Midland Hotel in Manchester, it
was a lunch time event and I
went along with my mum we had to
be there for 12.15pm.
I won, Oh my God... I won most
Inspiring Young Woman of the
year 2013.
Right
I'll calm down and tell you all
about it.
Two weeks before the awards I
had a visit from Jacqueline
Hughes-Lundy who is the founder
of the awards and Tom (Tom was
doing the filming). I was told
they were filming all three
young women who were finalist,
but I now know that they didn't
and it was just me! I had an
interview and photos taken which
I thought the other finalist had
done too, but it was just me. It
all kind of seems obvious now,
but I honestly didn't have a
clue that I was the winner, so
it made the surprise all the
more amazing when my name was
called, they showed a footage of
my interview and I was given a
standing ovations. They played
Peter Andre singing while I was
going up to collect my award (I
just love him he's such a caring
guy). I really was not expecting
to win. I was so pleased to have
been told I made the final
three. I was over the moon when
I won. I was presented with a
cheque for £1000,00 to help me
with any projects that I want to
do, a lovely bunch of flowers
and a glass trophy. I was
interviewed for the M.E.N, which
went in the paper the following
day and interviewed for
Manchester Radio. You can see
the press cuttings on my
press
link.
June
2013:
I
received a letter from Mr. N
Oxborrow over the bone scan that
I had, Mr. Oxborrow said he had
now reviewed the scans and is
making an outpatient appointment
so he can discuss the scans
further with me. My back is so
painful, I have had difficulty
sleeping, which is making me
really tired in the day. I have
been taking my strong pain
killer med's which I don't
really like to take as they make
me feel spaced out.
There was talk of me having
further spinal surgery and
taking the rods all the way to
the top again, but this again is
not going to happen for the time
being. I have now got a back
brace that I am able to wear,
the knee braces help some of the
time but when my knees swell
they are really painful to wear.
November 2013:
I had to
have surgery today in which
several tumours were removed due
to them causing lots of pain and
discomfort. My mum came with me
and stayed by my side the whole
time.
On the morning of my surgery I
mentioned to Mr. Duff (my
surgeon) that a new tumour had
grown in my thigh, when he
looked at it he said its best to
have it removed due to how
quickly it had grown.
after surgery Mr. Duff came to
see me and explained that the
tumour in my thigh had several
tumours growing on top of each
other and had started to grow
into the muscle, the tumours that
were removed in my neck were
like a bunch of grapes, but he
managed to get them all.
December
2013:
I had my
wounds look at, some had to be
redressed, but they were healing
well. The scare on my leg is
much bigger than I thought it
would be (5inc plus) and the
same with the scar on my neck,
but I suppose they only go as
big as need be.
Mum and I have been asked if we
will help with the year 5 OSCE
Examinations on the 15th
January. I have done this many
times in the past and I really
enjoy helping the doctors in
this way and it's also helps the
new doctors to understand more
about NF.
January
2014:
Not a
good start for the year, my gran
(mum's mum), who I love so much
had a fall and landed up in
hospital, she also had a mini
stroke. Gran was in hospital for
ten days and then transferred to
a rehabilitation unit for three
weeks before being allowed back
home. My gran continues to be
very confused, but doing well.
February
2014:
My mum
had a few hospital visits this
month, seeing Dr. Montague over
her prolapsed bladder, and her
orthotic doctor for new braces
to her knees and hands. Mum also
had a brain scan and spine scan
done.
The pain in my back as been
really bad and I have had a few
flair ups with my sickness. I
saw Dr. Watts who gave me the
results of the scan that I had
done on my tummy. The scan
showed that I have lots of
tumours in my tummy along with
lots of fluid. I was put on a
new tablet called "Ondansetron
4mg", this medication is given
to people who suffer from
Gastroparsis. The fluid that
showed up on my scan confirmed
that I have a server form of
Gastroparsis. The doctor is also
writing a letter to my works to
give them some information about
the condition. sometimes when I
am sick I feel much better after
it and can continue with my
work, but my boss always wants
to send me home when I don't
need to go home, so the doctor
is going to explain this to her.
The doctor is also going to
write a new letter for me to
take to the A/E department for
when my sickness gets really bad
as I feel daft going to the
hospital just for being sick,
but my doctor said its really
important that I do go to A/E
for IV treatment.
I am at the pain clinic in April
over being in so much pain in my
back. I am still in a back brace
when the pain is really bad, but
it does not always help.
April
2014:
Gastroparesis is a lifelong
condition, living with this
condition not only affects the
person living with it, but also
affects family and friends. I
think it affects my boyfriend
and me a lot because we struggle
to go out for meals sometimes,
this is because I might end up
having to leave the table
suddenly due to being sick. I
haven't been able to eat a
proper meal in the past few
weeks without throwing up. I
have been dealing with this
condition for a few years now, I
would like to say it gets
better, but it does not. I do
have good days and I have bad
days, and in work it can be
irritating because people think
I have a bug and trying to
explain that I am not sick
because of having a bug, I'm
sick due to a condition that I
have, its hard for them to
understand sometimes.
Gastroparesis is also called
delayed gastric emptying. The
term "gastric" refers to the
stomach. Normally, your stomach
empties its contents in a
controlled manner into your
small intestines. In
gastroparesis, the muscles that
contract and move your food
along the digestive tract don't
work properly so your stomach
empties too slowly.
It takes skills and strength to
deal with this challenging
digestive condition. It means
always looking for what does and
does not help your sickness, I
have pretty much stopped taking
milk, I think milk irritates my
stomach a lot, the only milk I
get is through cheese and if and
when I have a chocolate
milkshake from McDonalds, when I
do though, I am sick. It's catch
22.
WARNING:
This is
not in anyway medical advice.
Always consult your doctor when
it comes to your own treatment.
October
2014
It is
that time again, where I am due
to go in hospital, this time its
a bit short notice, I did have a
missed call whilst I was on
holiday, and I did try phoning
them back but as they are very
busy, there was no answer,
during my first week back at
work, I had waiting list phone
me to say that they have a spot
next Thursday (Monday is today)
they explained someone was to
poorly for the operation and
that I am due next on the list.
My Pre Op was then the same week
on the Friday.
I am not long out of hospital. I
had 8 tumours removed in total
this time, the ones taken from
my groin were like grapes, they
were three lined up together. My
head was shaved a tiny bit to
allow access to the tumour on my
head. it is slowly growing back.
:). I had my stitches removed 2
weeks later.
During my recovery time, my gran
was rushed into hospital, by
999, this was because she has
been coughing up blood and
vomiting old blood. this was a
very worrying stage for me and
my family
and she was in hospital about a
week. She has been diagnosed
with Pneumonia, fingers crossed
she will be better very soon.
December
2014:
I have been doing some filming
for NF today, this was a great
opportunity for me to speak
about what it is like living
with NF. This will be made into
a short video, which will be
made available to watch on the
NF website. In my understanding
there will be other people in
this video too. Later in the
afternoon I did some more
filming in a session with other
people who suffer from NF, it
was great to have a chat
together about NF. We spoken
about what we would of liked to
have known when being diagnosed
and the regular things we all
have in common. For instance a
few people mentioned the issues
they have had with schools, not
knowing that NF could affect
their learning. I am looking
forward to seeing the finished
piece.
My second book as you know has
been published and sales are
going ok so far. I was not
expecting Germany, Australia,
and Spain to be ordering this
quickly. I have already been
asked if there will be a third
book. I guess we will have to
watch this space. It's a digital
world now so who knows.
I have had some fantastic news
about my Fresh Documentary that
I made for the BBC Three online,
it has now made it through to
the UK TV programme, which will
be out this year sometime. It
won't be the whole documentary
that I did, but it will be part
of it. I am in hope that this
will raise some awareness about
our condition (NF). I will
continue my efforts to get the
word out there.
In terms of my health, I have
recently been diagnosed with "Meralgia
Paresthetica", this is affecting
me quiet bad at the moment , my
medication is being upped and
it's knocking me out. I am
hating the fact when I am out
with friends it will cause me a
lot of crippling pain. Evening
sneezing can set the pain off.
Basically this is what the
condition is: Melralgia
Paresthetica- condition
characterized by tingling,
numbness and burning pain in
your outer thigh. The cause of
Meralgia Paresthetica is
compression of the nerve that
supplies sensation to the skin
surface of your thigh. In most
cases, the condition can be
relieved with conservative
measures, such as wearing looser
clothing. In severe cases,
treatment may include medication
to relieve discomfort or,
rarely, surgery. I am going to
see a specialist about this to
see what can be done. It could
be the operation or injections
for me. I have also been sent
for an MRI of my spine to see
how the tumours are getting on,
I should have the results in the
New Year.
January
2015:
I haven't
done hydrotherapy for a while so
its great being back to doing
this. Although, I have to go
straight in work after it's
going to be a tad tiring for me.
It's a good job I have
understanding colleagues that
know my situation so hopefully
they will be ok with it.
I am still in a lot of pain in
my groin area due to this new
condition that I have been
diagnosed with (I will have to
get the name of it again). But
I'm sure in within time and
taking the my tablets it will
get better.
My Ronnie Gran is back in
hospital again, Gran was taken
back into hospital two weeks ago
due to her vomiting blood again,
she had to have a blood
transfusion. After a couple of
days the doctor said my Gran was
well enough to go home even
though Gran had complained of
having heartburn and was in a
lot of pain. She was kept in the
discharge lounge for over four
hours instead of being kept on
the ward (they did not even need
her bed so she could of stayed
on the ward and waited for the
transport), on her way home in
the ambulance my Gran started to
vomit blood again so the
ambulance turned round and took
my Gran back to hospital and up
to the ward that she was on
before being discharged, the
ambulance driver told them she
was not well enough to go home.
she was kept for a further 24
hours and then discharged again.
Mum is not happy with the doctor
who did this to my Gran and has
said she does not want this
doctor treating Gran again.
The following Wednesday Gran was
taken into hospital again (she
had only been home a couple
days). This time Gran had a DVT
in her leg. this clot is huge
and goes from the ankle to her
thigh. Its been a very difficult
time as leaving the clot and
doing nothing would of been
extremely dangerous, it was
decided that my Gran be treated
with one injection everyday to
thin her blood, but the danger
we have now got is if my Gran is
to have a bleed from the ulcer
again it would be very dangerous
with her blood being so thin.
The doctor has the blood bank on
standby as Gran would require a
transfusion pretty quick, Gran
would also need to have
Endoscopy to try and stop any
bleed.
We are keeping are fingers
crossed that my Gran is back on
her feet very soon, we all love
her so much.
January
2016:
Not
having a good start to the year,
my Ronnie Gran as been in and
out of hospital so many times.
Every time the phone rings we
are worried that it is going to
be the care home to say that my
gran is vomiting blood again.
Both my mum and I have been
taken into the relatives room so
many times to prepare us for the
worse. But I'm pleased to say
that my Gran as pulled through
each time.
My mum as also been in hospital
for surgery, my mum had a TVT
band fitted and spent over a
week in hospital, mum was unable
to wee after the surgery and had
to self catheter. mum was out of
hospital for three weeks before
being taken back in hospital for
more surgery on her bladder and
spent a further week in
hospital, mum is still unable to
wee unless she uses a catheter.
Doctors are not sure if things
will get any better or if she
will have to use a catheter for
good.
My mum is also due in hospital
later this year to have some
tumours removed that are causing
some pain.
My own health is up and down at
the moment. I am going in
hospital in November to have
some tumours removed that are
giving me a lot of pain and
growing. I should only be in
hospital over night.
I still keep having flair ups
from my grastroparisis, but I
have not had to stay in hospital
with it.
One of the biggest things in my
life at the moment is that I am
buying my own home and hope to
move later this year.
Work is
really busy and I also have my
own voluntary UK Health radio
show every week, I talk to
different people about all
different health issues, if you
would like to to get involved in
my show and chat about any
health issues that you would
like to talk about please get in
touch with me and ill see if its
something I am able to help you
with. You can also listen to
some of my past shows by
clicking on the following link:
Sunshine Ukay Health Show.
January 2017:
My health issues continue to
cause me a lot of pain, I am yet
again trying a different a brace
on my knees in the hope that
they will keep them stable.
I am due back in hospital over
the next month or so, more
tumours are growing all the time
and causing pain.
My Ronnie gran continues to be
in and out of hospital and over
the last twelve months my gran
has had sepsis three times and
managed to fight it, she is a
strong lady. We have got a big
party for my gran in June as she
will 90 years young, we have got
a singer booked to come and sing
all her favourite songs.
My gran had to go back into
hospital under blue lights twice
recently and has now been in
hospital five weeks, she’s got
sepsis yet again and this time
she’s also had a stroke. Gran
spent her 90th
Birthday in hospital so was not
able to celebrate her Birthday
in the way that we wanted.
Please keep praying for my gran
to recover.
My gran is not improving and is
being transferred to a nursing
home due to the amount of care
she needs.
September 2017:
Its with great sorry that I have
to tell you that my Ronnie gran
passed away on the 3rd
August, my mum and uncle was
with her when she passed. I
believe in life after death and
I know my gran will be looking
down on us. My gran loved horses
and she had two white horses
take her on her way to her next
journey in life. We are all very
upset at the moment, my gran was
a friend to everyone and she
will be greatly missed by all
her knew her. R.I.P Gran xxx.
April 2019
I had my 29th Birthday, me, Sam
(best friend), mum, dad, went to
Kilder Observatory to do some
night time photography, it is
suppose to be one of the darkest
places in the UK. I love
photography so thought to do
this as a nice little break with
my family.
I don't get out much these days
and my hobbies and interests are
pretty limited, so I have joined a Mental Health
choir (Bee Vocal) we meet every
Wednesday and we perform/sing at
the Bridgewater hall in
Manchester. I am really enjoying
the experience.
August 2019
We were invited to
represent Manchester City at
Wembley Stadium for the FA
Community Shield. We were
invited by Prince William and
the charity Heads Together to
help launce the new Heads-Up
mental health campaign. Joining
Bee Vocal is really helping me,
and I have met so many people
who understand how you maybe
feeling.
November 2019
I have joined a Mental Health
choir (Bee Vocal). I auditioned
for a big event and was
successful (second best actually
as someone dropped out and then
they phoned me) We sang
on stage at the Royal Variety
Performance alongside Emeli
Sande, at the end of the
performance Emil Sande invited
us to sing on stage with her at
Apollo in Manchester.
December 2019:
i
have been
in hospital having some more
tumours removed that were giving
me a lot of pain. I was in
hospital over night , I spent a
few days with my parents to
recover from the surgery. Early
on in December we sang at the
ITV Carol Concert in Stockport
which will be shown on Christmas
Eve
January 2020:
Well life goes on and not a lot
as changed for me. I have been
in hospital a few times to have
more tumours removed. It
looks like I will be going in
again later this year too.
My health is not getting any
better, more tumours growing and
some causing a lot of pain. I
have a great Plastic surgeon
(Mr. C Duff)who understands how
painful these NF tumours can be.
I now suffer with my bladder and
suffer from an overactive
bladder, this is really
stressful as I need to make sure
I can always get to a toilet
quickly due to the urgency of
needing to go to the toilet.
Finally had my garage converted
into another room, I only used
the garage as a junk room so by
having the work done it
encouraged me to get rib of all
the rubbish I had in it,
What a year its been
March 2020 - December 2020:
My Granddad passed away at the
beginning of March (my dads,
dad), he was 94 years young. He
was in hospital and all the
family was with him when he
passed. Covid 19 had only just
been announced at the time and
my granddad and been in hospital
a few weeks. My best friend Leon
from work, also passed away two
days later due to mental health
difficulties and then I had both
funerals on the same day.
My 30th Birthday was cancelled
due to this thing called Covid,
my friends, neighbours, family
tried to make it as special as
they could by decorating the
outside of my house, friends
coming in cars and waving from
the car windows dropping gifts
off, zoom quiz with my friends.
It was rubbish, as I had planned
to have a BBQ and see my friends
and spend time with niece. I
even got a slide and swings for
my goddaughter, niece, nephew to
play on.
My mum had a nasty fall and
badly broken her shoulder, she
needed surgery to have plate and
screws fitted. Her doctor has
said she may never get the full
use back in her arm due to how
bad the brake.
My nephew turned one in August
and i managed to spend time with
him in a local park and see my
niece. but no hugs - :(
like many of you all my hospital
appointments are being done over
the phone or by video call,
apart from my scans.
im working from home, so I don't
really get to see anyone due to
the lock down. One of the worse
things about this lock down is
not seeing my Niece and Nephew,
my niece was four on Christmas
day and my nephew was one in
August. I talk to my niece on
video call, which is lovely.
my nephew is growing up fast, he
is talking, and so funny, I love
them both so much. My parents
are struggling not seeing them
too, especially my mum.
January 2021:
Some big news is that I have
started on my journey to being a
mum. I have set up a web page
called "Love,
life & Disability"
. you can find me on
facebook,
twitter,
Spotify.
I am having IVF with a pinch of
science called PGD
(Pre-implantation genetic
diagnosis). This ensures that my
genetic disability
Neurofibromatosis, will not be
passed down to my future child.
I am currently looking for a
sperm donor through banks, but
due to Covid 19, there has been
huge delays on gentleman coming
in to donate and given the banks
have also been closed this has
delayed my treatment by
6months-1year. I am still
single, as I have not met the
right person that I want to
spend the life with.
My
Books:
I have written two books
about living with
Neurofibromatosis that gives a
lot more information and in a
lot more detail along with
information from some of my
doctors. My first book "Living
With Neurofibromatosis and
Scoliosis" talks about how I
have coped with living with NF
and Scoliosis, the treatments
that I have received and tips on
coping with test and treatment.
The second book gives an update
on my story and stories from other people
who suffer from
Neurofibromatosis, which will
give you an understanding on how
NF affects people so
differently. for more
information on how you can buy
copies of either of the books
please go to the following link
Please
Remember:
NF
is a life-long condition, and
you must learn to live your
life, and not let the disorder
rule your life. The more you
understand the more you will be
in control, so be sure to ask
questions of your medical
professionals. Find someone you
trust, and share your feelings,
fears and frustrations. The
challenges posed by having NF
are hard, but they can be
overcome and you are not alone.
They say a problem shared is a
problem halved. You can always
email my mum or me and we will
both do what we can to help.
I
hope one day we can say "We have
found a cure for NF,
Neurofibromatosis is now
history".
If
I can offer help and support to
anyone, please contact me. We
are all here to help each other.
That is a gift we can give each
other. Thank you for reading my
story.
Thank you to all my doctors,
nurses, family and friends for
getting me through some of my
most difficult times.
There is a lot more information
in both my books which you may
find helpful to you or your
loved ones.
You can
now follow me on Twitter @kirstysstory
and if you have got any
questions you would like to ask
me you can also email me at
kirstys.story@gmail.comove it if you would join me on
Twitter.
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