Mr. Oxborrow
comes in early to see how Kirsty has been over night, takes her temp’, he is
happy with things and tells her he will see her later. A few hours later Kirsty
is taken to theatre, Mr. Oxborrow meets her and ask how she is feeling, he
decides to take her temp’ again (he was not happy with the way she was looking).
Guess what? The temp’ was up so he sends her back to the ward (results show she
still has an infection). Over the next few days her temp’ is done every two
hours and the results reported back to Mr. Oxborrow. Op’ now planed for Thursday.
Thursday
24th March 2005
This time operation
goes ahead after spending 15 days on her back, Kirsty goes down for surgery.
Next
operation begins and so does the long wait for it to be over. After six
hours we ask Louise (one of the nurses) to ring and find out how things are
going. We are told the op’ is going well but is going to take longer than
they thought. Two hours later and we are told it is all over and that Kirsty is
in recovery, we both go down to see her before she is taken to H.D.U. Her
face looks a little swollen but she is comfortable. We stay till late and then I
go to the parent’s room and John makes his way home. The next day Kirsty is
still being very sick and in some pain, which is understandable with all she’s
been through. Mr. Oxborrow and Tarek calls to see her and say how pleased
they are with how things have gone. The op’ was very difficult due to the amount
of tumours on and in the spine but he hopes the rods will hold the spine but if
not Kirsty will have to have the operation done again down the front.
I decide to
go and let the nurses and her friends on her ward know how things have gone, I
am told Danny Young (Warren from Corrie’) and Nikki are in the hospital, Kirsty
really loves Danny and has many posters of him up on her wall. I was talking
with some friends on the corridor of the hospital when Danny came up to me and
said “hello Babe” (I could not believe it). I told him about Kirsty being on
H.D.U and how poorly she had been. Danny went to see her and what a nice
guy, he was very upset when he saw Kirsty and one of the nurses (Lesley) heard
that Danny had gone to see Kirsty and she came running up to H.D.U to see her
face. Kirsty really was not very well at the time (as you will see by the
pictures), her face is swollen and she is in a lot of pain. But that did not
matter, Danny was a really nice guy and he really made Kirsty’s day.
Danny Young and Kirsty on H.D.U |
Nikki also came to see
Kirsty
|
Mr. Oxborrow calls to tell us what he had done.
He
said that he had inserted 2 titanium rods down either side of Kirsty’s spine and
screws and hooks hold the rods to the spine. They extracted the sacks of fluid
that everyone has between each vertebrae and they fused each vertebrae together
to make her spine solid, they also used bone from pelvis. No tumours were
removed, as it was too dangerous to touch any of them.
A few days later and back on
the ward
Kirsty is still in a lot of Pain and being very sick. Mr. Oxborrow is getting
concerned at the amount of weight she has lost (over a stone), he talks about
putting a feeding tube in but decides to get the dietician in to see her who is
also concerned and puts her on Scandishake drinks to see if this will help.
30th March 2005
Kirsty has not been very well over the last few days and it’s looking a so she
will be spending her Birthday in hospital. Kirsty is fitted for her new
body brace today and this is very painful for her due to it being the first time
she has sat up. She is told the brace will be ready for the 5th April
(her birthday), what a great birthday present.
Over
the next few days Kirsty is in a lot of pain and still being very sick.
5th April 2005 and Kirsty’s 15th Birthday:
Kirsty’s 15th Birthday and as I expected Kirsty
is still in hospital and still not very well but she’s still got that lovely
smile and trying hard to stay cheerful. The day starts off with Kirsty
opening all her cards and gifts, which have been sent to her by family, friends
and post pal, Claire arrives with kirsty’s new body brace all wrapped up in a
big bow, which set the ward off into a fit of laughter. After dinner Kirsty has
a surprise visit from Julie and Ian (Haley out of Corrie’ and her husband) who
both jumped into the ward singing happy birthday, while Julie and Ian were
visiting Kirsty the nurse’s wheeled in this great big cake with more gifts from
the children and nurse’s on the ward, everyone sang happy birthday and shared in
the cake, which was so big the whole ward could have a slice. The doctors call
to see Kirsty and sing to her. Kirsty had a great day but is very tired and
became unwell during the night again.
7th April 2005:
Kirsty was allowed home this evening
only to be readmitted with sickness and high temperature. Kirsty goes home again
on the Sunday with some new tablets to try and help with this sickness and is
due to see
Mr. Oxborrow on Friday.
Friday 15th April 2005:
Kirsty was feeling very unwell on our journey to the
hospital, I am finding it really hard watching Kirsty keep being so sick and not
knowing what I can do to help her. By the time we get to the hospital she is
looking dreadful,
Mr. Oxborrow sees Kirsty straight away and he too was concerned
and decides to contact the medical team to have a look at Kirsty, Kirsty starts
being very sick and is kept in hospital, she’s lost so much weight, about two
stone and she is only very thin to begin with.
What I thought would only be a day a so
turned out to be seven weeks, I slept on a chair next to kirsty’s bed I was so
frightened to leave her. Kirsty is put on an Intravenous Drip and bloods taken. Over
the next seven weeks Kirsty still continues to be very sick and a number of
tests are done to try and get to the bottom of why Kirsty is still being so
sick. They start with an ultra sound scan of the tummy and doctors were then
advised that she should have a
gastroscopy. I’m called to the theatre about an hour later where the doctor
tells me that Kirsty’s stomach
lining is very badly inflamed and that her food was not moving out of the
stomach very well, he also took
a tiny biopsies (samples of tissue) from her stomach during the test, he advised that she should start on
these new tablets and that he would see her later. Kirsty was moved to another
ward over night because she was really unwell and they would be able to keep an
eye on her better. During the night Kirsty’s condition got worse and the doctor
was called for, he sits with her for a while to monitor her condition and
decides to put her back on a drip. It’s now the early hours of the morning and
the nurse tells me to jump on the empty bed next to Kirsty (this is my first
time sleeping on a bed in weeks), but it’s not long before Kirsty is being
really sick again. Later in the evening Kirsty is moved back to her ward, the
nurse felt she was to unwell to be moved off her bed so they wheeled her over
the car park on her bed.
The following week doctor’s decide to
do a PH Study on Kirsty, the PH Study was to
measures the acid that refluxes from her stomach, a very thin tube was inserted
up her nostril, until it reached just above her stomach where it stayed for 24
hours, this really made Kirsty heave, she had tears rolling down her cheeks, all
I could do was hold her hand and do my best to comfort her, I so much wanted to
be able to do more for her. The results of the PH Study were good, which was
good news.
Brain Scan:
Doctors decide a brain scan should be done to make sure
that the tumour on her brain stem had not grown. The results shown little change
in the size of the tumour from her last scan three years ago, so in away that
was good news.
Kirsty is now on two lots of intravenous
anti-sickness drugs, painkillers, and stomach tablets and at last the sickness
is beginning to stop although she still feels very sick.
June 2005:
Well, we are now into June and I am
beginning to see a light at the end of tunnel, Kirsty is able to do some physio’
over at the gym and she’s also managed to keep food down. I am still very
concerned that she losing weight and doctors tell me that she may need to have a
nasal-gastro tube inserted in
order to get some extra feed into her stomach but first they decide to try
putting Polycal into her food and drinks. Polycal is used for special medical
purposes and for dietary management, they want to try and get her to twenty
scoops of Polycal a day. Kirsty is also still on the Scandishake mix or Kirsty’s
nickname for them is scanky-shake.
Doctor’s decide that Kirsty could go home for a few hours
today to see how she gets on and things went well, Kirsty still felt very sick
and we returned to the hospital early but it was so good to be in my own home
even if it was just a couple of hours.
Over the next week Kirsty was allowed to sleep at home
over night, which was great. Kirsty does some work on her web page by getting
back to people and thanking them for all they have done, she did go on in the
hospital for the people who needed help and advice but soon got very tired and
while at home she managed a good half hour at the pc.
Back at the hospital:
Kirsty has a blood test done today and the results show
Kirsty is slightly anaemic and this was to be repeated later in the week.
7th June 2005:
Doctors call for a
meeting to discuss when Kirsty can go home, Kirsty is so desperate to go home
and she has promised to do something for Wish Upon A Star and Kirsty being the
true star she is she will not want to let them down.
9th June 2005:
Kirsty can go home on the understanding she takes things
easy and continues with her Polycal, Scandishake and all other medication.
12th November 2005
Kirsty is still not 100% and still keeps being very sick
and in a lot of pain, she is back in school even thou she attends hospital
weekly and some times twice a week.
I am still finding it hard seeing her
in so much pain and not being able to help her, all I can do is sit with her and
try and comfort her.
The doctor at Sheffield children's wants Kirsty to try this new tablet,
which Kirsty is a little worried at taking due to the side affects, I also don’t
like the idea of saying she must take them just in case it does have a bad
affect on her. I can only hope she is ok on them.
Kirsty has been in so much pain in her back and leg and
she is waiting to have surgery on her leg where the doctor will remove three
tumours, which are deep in the leg. Her physio’ in the hydro’ pool will continue
for a while yet as she is still not very strong.
What makes me so proud of Kirsty is even thou she is in a
lot of pain she is determined to raise £5000.00 before Christmas for the charity
When You Wish Upon A Star and I’m sure she will do.
Pride of Manchester
Award
|
Chris, (her brother) put Kirsty forward for the Pride of
Manchester Award and she is in the finals we find out in January 2006 if she is
one of the winners.
12th January 2006
We are really proud
to announce that Kirsty was voted the overall winner of the Pride of Manchester,
her prize being £3000.00 for charity, which will go to When You Wish Upon A Star
and a glass trophy with her name engraved on it. There were eight finalist and
each one had a remarkable story to tell, each and everyone do Manchester proud.
9th February 2006
Kirsty had to go for a Brain and full Spinal MRI Scan
today due to her having persistent nausea, headaches and dizziness and more
recently the loss of balance. Mr. Oxborrow is concerned that one of the tumours
may have started to grow. This is the problem faced with NF it can be a very
cruel condition and nobody can say what will happen next. We are just very lucky
that Kirsty is good about everything and does not let it get her down.
7th March 2006
Good News. We received a letter from Mr Oxborrow today,
which read the results of Kirsty’s MR Scan on her brain and spinal cord show
nothing more than the neurofibromatosis, which they knew about already, so he is
not sure what is causing this persistent nausea, headaches and dizziness.
Not sure what
happens next, it’s so hard to see your child feeling so ruff but I am pleased to
say the Gabapentin tablets that she is now on for her pain does seems to be
working at last and she's not needed as many of her other pain killing tablets.
Kirsty is due to go
back into hospital on the 29th March '06 to have three tumours removed from
inside her leg, we will update after this time to let you know how things go.
She is keeping very busy with her fund raising at the moment.
22nd March 2006
We have just
received a letter from Mr. Thorn saying he's looked at the scans that Kirsty had
a few weeks ago and he would like to have a chat with us, which should of been
next Wednesday but Kirsty will be in hospital having an operation on her leg so
we have now made a new appointment for the 12th April '06. We will update after
Kirsty's had her surgery.
1st April 2006
Operation over, Kirsty was only in hospital a couple of days this time but she
is in a lot of pain and finding it very difficult to get around at the moment,
which is only to be expected after having three tumours removed from inside her
leg. Kirsty goes back to the hospital on the 5th April ’06 (her
Birthday) to have the stitches removed, something she is not looking forward
too. I will up date after we have seen the doctor.
14th April 2006
Well, we have been to see Mr Thorn and yet again
we leave confused and not really sure what is going on as Mr Thorn tells us that
he thinks Kirsty may have NF1 and NF2, I did not think that was possible but I
am told it is very rare and there are only very few known cases in the world. I
really think I am going to get some genetic testing done because at the moment I
am out of mind with worry. I mentioned to Mr Thorn that this was mentioned last
year when Kirsty was in hospital that she may have NF2 as well as NF1 and it was
suggested some more test were done but in the end none were carried out, he
tells me that some of the tumours on her spine are characteristic to NF2 tumours
and that Kirsty’s got at least one tumour on every nerve in and on her spine, I
think you can imagine how we are feeling at the moment. My next step will be to
have a word with our family doctor to ask for the test that should have been
done last year when she was in hospital.
20th May 2006
I
received a letter today from Kirsty's NF doctor in which she says. In a small
proportion of patients with NF they develop spinal root tumours that clinically
and on scans look very similar to those they see in NF 2- they can only separate
them when they are removed because in NF2 they are schwannomas under the
microscope and n NF1 neurofibromas. The doctor goes on to say she can completely
understand our anxiety and has written to Mr Thorn to ask him to consider doing
an up to date head scan on Kirsty. The NF doctor also wants to discuss the issue
and consider NF2 gene testing.
Kirsty was also measured for her new back brace yesterday and is being so good
about everything, she is a really great kid that is always thinking of how she
can help others. We are so proud of her.
16th
June 2006
Kirsty’s
school Prom. The afternoon started by Kirsty having her hair and makeup done by
Gillian (Gillian does for the Corrie’ stars) and even if I say so my self she
looked like a princess and I had tears in my eyes. Our little girl looked so
grown up.
23rd
June 2006
Kirsty went for her new back brace today and when we got
home we 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 Kirsty injuring her spine and neck (you can read more about this on
Kirsty’s page). All I can say I’m glad Kirsty had her new back brace on.
1st July 2006
We are off to swim with the dolphins in
Florida, which an ultimate dream of Kirsty’s that came true after the When You
Wish Upon A Star team granted her wish.
The experience was amazing and something we will never
forget. To swim alongside these magical creatures and to watch that smile on
Kirsty’s face you could see the love in her eyes (read more about this on
Kirsty’s Page).
20th July 2006
Kirsty is undergoing test at the moment
to see if she has both NF1 and NF2 and recently had blood test at St Mary’s
Hospital, which will take three months before we get the results back. She’s
also had brain scan yesterday, just waiting on the results now.
27th
July 2006
Went to Sheffield Children’s to see
Susanne Davis today Kirsty was given a V.TENS PLUS to use for the pain and her
Gabapentin was increased.
28TH
July 2006
Went to Pendlebury Children’s Hospital today for a check-up on her spine. We saw
Mr Oxborrow. Kirsty had been telling me that her back was hurting her and that
she was in pain with it. But when I looked at her back everything was looking
ok, I feel really bad now as Mr Oxborrow sent Kirsty for an x-ray and
unfortunately he told us that her back had gone worse. I could of cried, I kept
asking my self why could I not see it? Mr Oxborrow also told us that she had
some new tumours on her spine. He mentioned further surgery in which he would
place rods all the way to the top of her spine but Kirsty was not keen for him
to do this at the moment, as there is 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 now wants
Kirsty to have a bone scan and he is going to have a chat with the neurosurgeon
to see what would be the best steps to take now.
He was unsure if
it would be safe for her to use the TEN’s and wants me to phone Mr Thorn for
advice.
11th October 2006
Kirsty has been getting very breathless recently so I took
her to see our family G.P as I was getting worried, Kirsty was sent to have
chest X-ray.
18th October : X-ray results:
The radiologists
report mentioned that he could see a tumour coming out of the top of Kirsty’s
right lung. This is so hard for me to take in, yet Kirsty just takes it all in
her stride; she’s such a great kid. I have got to take Kirsty to see a chest
specialist next week for more tests.
Kirsty as also got to have an ultrasound scan of her
kidneys as she’s been getting a lot of pain in her back, ribs and sides This is
to make sure that Kirsty does not have any tumours on her kidney.
Kirsty still continues to attend hospital weekly, I just
wish I could do something to take her pain away as any mother would do.
24th November
2006
Not much change
really, Kirsty's had so many new tumours developed in her body over the past few
weeks and it's hard seeing her in so much pain and not being able to help her.
Kirsty is waiting to have a lung function test done. The Lung function tests
will help determine the cause of Kirsty’s shortness of breath and other
breathing difficulties that’s she been having. She is also waiting on an urgent
appointment to see another specialist over the tumours found around her kidney
area.
21st January
2007
Kirsty continues to amaze us with her strength and determination not to let
things get her down.
The lung function test came back with some abnormalities and need to be looked
at by a specialist who will then contact us with what happens next.
When Kirsty saw Dr Huson
recently she mentioned to her about some new tumours that have grown and are
very painful these will be removed by Mrs Brain who is the plastic surgeon. Dr
Huson also felt it would be a good idea if Kirsty was to have a PET Scan, PET
stands for Positron Emission Tomography. This will help to find out more about
how Kirsty’s condition is developing. It can also be used to measure how well
treatment for a condition is working.
26th
January 2007
I
found things really hard yesterday, Kirsty was in so much pain and I could not
do a thing to help her. She needed the colonoscopy test doing due to the
bleeding she had been getting from the anus and the pain that she had been
getting in her tummy.
Kirsty was crying with the pain that
she was in and I felt hopeless not being able to do anything for her. She’s now
left with two black and blue arms from where the doctors tried to put the canula.
I was able to bring Kirsty
home at the night and the doctor said he would send a full report but everything
looked ok, which was good news.
Took Kirsty
to see Mr. Oxborrow today
Mr. Oxborrow
was pleased with the x-ray results of Kirsty's spine and said the spine had not
gone any worse. He was concerned about the newly diagnosed Drop Foot condition
and has arranged an urgent scan of her pelvis and bottom of the spine as he is
worried that Kirsty may have a tumour at the bottom of her spine now too.
He had spoken with Mr. Thorn
who had told him that Kirsty does have multiple
tumours all over her spine, which Mr Oxborrow was already aware of. It’s really
hard trying to find away to control the pain that Kirsty is in.
We are now
trying to get her a Spenco Spinal Mattress as her other spinal mattress is not
really helping her get a good nights sleep.
Kirsty is still attending
hospital weekly and continues to be very good about it all, which is helping us
as parents at the moment.
26th March 2007
Finding things very
difficult at the moment, I took Kirsty for the results of her scan on Friday and
unfortunately she now has a cluster of new tumours at the bottom of her spine,
one of which is over what they call the cut off point. Mr Oxborrow (Kirsty’s
spinal Doctor) was also concerned that the tumour in Kirsty’s neck is growing so
fast and was also concerned about the one in her lung.
Mr. Oxborrow phoned this
other doctor to tell her about Kirsty and I have got to take Kirsty back to the
hospital this week when she has seen kirsty’s scans and reports.
What amazes me, Kirsty
just takes it all in and is so strong. But as any parent knows it’s hard seeing
your child undergoing painful treatment, how many of you have said “I wish I
could have it for you”? I know have, many times.
10th April 2007
Last week I received a letter from
Christies Hospital for Kirsty to go for a PET Scan,
I was asked to phone the department to confirm Kirsty would be
attending on doing so I was told the scan had been cancelled and
told to phone the doctor who had arranged the scan. I was really
upset as Kirsty had been in a lot of pain and getting pains in her
chest.
I phoned the doctor to ask why it had been cancelled and
was told that Dr Brennan is going to see Kirsty as soon as she has reviewed all
the scans etc and she feels that to do the PET scan before that may complicate
things further. Also that all the Doctors involved in Kristy’s care need to
liaise (Mr. Oxbarrow, Mr. Thorne, Dr Barber, Dr Brennan and Dr Huson.) and that
she realizes this is a worrying time but the kind of neurofibromas Kirsty gets
always cause more pain than the ones on the skin.
I am finding it difficult to see Kirsty in so much pain and not being able to
help her, it’s not like Kirsty to complain of pain, so I know she must be in a
lot of pain to complain about it.
Mr. N Oxborrow as been
really good and when Kirsty suddenly developed foot drop he took steps to find
out why, which is when we found out that Kirsty has a number of new tumours on
the bottom of her spine, one of which is above 3cm.
I really don’t know how long
I can just sit back for, this is my child and like any parent I love her more
than words can say.
Neurofibromatosis can be a
very cruel condition and affects everyone different and although Kirsty looks
great, inside her body has so many tumours that give her so much pain. But
unlike many of us adults who sit back and feel sorry for ourselves, Kirsty is
always thinking about how she can help other poorly children. She is a great kid
and I love her more than words can say and I know we will get over this next
hurdle together.
Kirsty Celebrated her birthday on
the 5th April and I would like to say a BIG thank you to: Our son
(Chris), family, friends: Julie, Kersh, Martha, Paddy, Paul, Colin, Hospital
Staff at Wythenshawe Hospital and Post Pal for making Kirsty’s Birthday extra
special. Kirsty really enjoyed her day.
19th April 2007
Unfortunately
the hospital did not go so well for Kirsty today, Mr Thorn put the scans up for
Kirsty to have a look at and told us that she has at least one tumour on every
nerve that is coming out from the spine some of which are above 4cm. He also
thinks that she may be starting with foot drop in the other leg too and will
need a foot brace for her other leg soon. I asked about him 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 anyway.
He wants Kirsty to have a lung scan and if the tumour in
her lung has grown then that will have to be removed.
I was very up set by the news as she is going to have a life of pain and
nothing can be done at the moment to help.
I have just spent the last
two hours cleaning my kitchen to try and take my mind off things. I really don't
know what I can do to help, my husband and I cannot understand why the doctor is
letting the tumours get so big when Kirsty is in so much pain.
Mr. N Oxborrow (Kirsty's spinal doctor) as been fantastic with Kirsty and we
have got a lot to thank him for. The operation he did on Kirsty's spine when he
inserted the rods is looking good and if you are reading this Mr Oxborrow "thank
you" for all you have done to help Kirsty.
15th June 2007
We are finding things really hard at
the moment as Kirsty is to go into hospital for more surgery and we have been
told that she may also need surgery on her lung.
We have had problems trying to get the
correct electric bed for Kirsty as her room is only small, they do do beds to fit
but because the OT's ordered the wrong size bed it caused so many problems then
we were told that we would have to pay £1500.00 towards the bed that Kirsty had
been prescribed by her doctor. As many of you will know seeing our
children in so much pain is difficult and at the moment I cannot see any light
at the end of tunnel.
July 2007
Well, I am pleased to say after my son
got on to the boss of the OT's and explained everything, Kirsty now has her
electric bed and we did not have to pay anything towards it.
31st July 2007
It was great news from the hospital
this morning, Kirsty will not need surgery on her lung at the moment as her
lungs were looking good today when he x-rayed them and he thinks by doing
surgery it would cause more problems for Kirsty. However, he does want Kirsty to
have physio' on her lungs to help with the breathing as her breathing is still
not what it should be. But being a parent I would rather Kirsty go to hospital
twice a week than have to have surgery on her lungs.
We are still waiting on a date for
surgery on Kirsty's neck, tummy and arm, which should be in August sometime but
hopefully Kirsty will not be in hospital very long.
Kirsty managed to pass her theory
driving test last week after only getting one question wrong "WELL DONE Kirsty"
I am so proud of you. Now for the driving lessons.
12th September
2007
The results of Kirsty’s nerve conduction test and pelvic scan results were not
what we hoped for. Unfortunately the nerve conduction test showed that Kirsty
does have damage to her major nerves that work her legs and feet, which is why
she developed the foot drop in both feet and pelvic scan showed that Kirsty has
tumours all round and on the major nerves in the pelvis. After chatting with
Kirsty’s NF doctor it was decided that Kirsty should now have a PET Scan,
depending on the results from the PET scan Kirsty may have to go and see a
doctor London. The good news was the foot drop in both her feet had not got any
worse, which was great news.
Kirsty took the news well. But as any parent will understand it’s so hard
watching your child keep having to have all these test, maybe one day they will
find a cure for NF.
4th January 2008
Well, it's the start of a New Year
and for Kirsty it starts with more hospital visits. The P.E.T scan that Kirsty
had is to be repeated as the doctor who did the scan said it was a cold on the
day that Kirsty had scan and he wants to use the last scan as a base line scan
and compare the two.
We have also just found out that
Kirsty's now got Nf tumours in her tummy, they are not very big. but the size of
these tumours do not make any difference, it can be the smallest of the tumours
that is giving her all the pain, we will have to wait and see what the doctor
decides to do next.
6th February
2008
Kirsty is having an M.R.I scan of
both her knees on Friday has her knees keep giving way. I took
Kirsty to see an orthopaedic doctor at Pendlebury two weeks ago and
he was concerned that both Kirsty's knee caps were loose and that
she had swelling to the back of her knees so he wanted her to have a
scan to see what was going on.
TV interview
We are off to
London Thursday to do a live interview for channel 5, they want to
talk to Kirsty about her NF and fund raising, it's only just over a
week off her big charity Valentine Ball.
18th July 2008
So much has happened over the
past few month I don't know where to start. OK, let's think.
the TV interview that Kirsty did for Channel 5 went really well, we
were only in the studio for about an hour.
The Manchester Evening News were asking there readers to nominate
someone for the Manchester Hero Award and must say I was shocked
when we received a call from the M.E.N to say that they had received
lots of letter's from members of the public nominating Kirsty for
the award, not that she doesn't deserve the award she does but it
was nice to know so many members of the public thought so too.
Kirsty was voted one of the 25 winner's and won £1000.00, which she
going to use on the book that she is writing.
Kirsty
Valentine Ball went really well and she raised £23.000.00, which
means she has now reached her target of £65.000.00 and will be
paying to send 100 very poorly children and a parent to Lapland in
December to meet the real Santa. But she is not going to stop there,
she is now trying to raise a further £60.000,00 so that she can send
30 poorly children and their families on a five day holiday to
Centre Parc's. if you think you can help Kirsty raise this money
please make a donation on her just giving link it is very safe to
make a donation in this way, or maybe you would like to buy some pin
badges for your friends and family every little helps, they only
cost £1.00, if you go to the new link on Kirsty's front page you can
view what the pin badges look like.
I have been keeping a big
secret from Kirsty, which I found really hard to do. I received a
call to tell me that Kirsty had won the Huggable Hero Award for the
UK and that both Kirtsy and I
would be flying out to Washington DC for 3 days. where Kirsty would
meet the other eleven Hero's from around the Glob and take part in a
Photo Shoot for the Build a Bear 2009 calendar (look out for the
calendar in your Build a Bear shop around November). Kirsty will
also receive some money for her charity and money to help her at
University when she starts.
Kirsty was voted a Huggable Hero by
the Build-A-Bear Workshop the organisation based in the United
States, which gives back to the community through the Huggable
Heroes program. The program recognises young people who make a
difference through community involvement. Kirsty was nominated
for her award because of her work within the community.
We had to take
Kirsty to the Build a Bear work shop in the Trafford Centre where
she was surprised told she had won the award, she was in total
shock, channel M filmed it all and she was on the local news that
night.
Kirsty is still in a lot of
pain and attending hospital weekly, I always go with her and keep
her company. I just wish something could be done to stop these
tumours from coming. NF is a very cruel condition. It's a good job
we have a lot of support from all Kirsty's doctor's. Mr. Oxborrow
(Kirsty's spinal doctor) is very good and never takes things for
chance. We also have a very good GP (Dr. Smyrniou) and
our NF doctor (Dr. Huson) is very good too.
15th October 2008:
Since the last time I
wrote things have worsened for Kirsty and after chatting with our NF
doctor it as been decided that Kirsty should see a doctor in London
to chat about what can be done to help Kirsty, depending on what
this doctor says we may have to take a trip over to the USA
to see a doctor. In the meantime Kirsty is going into
hospital for more surgery before Christmas to have three tumours
removed, which are giving her some pain, the doctor said these
tumours can be removed safely. She is also waiting to have
echocardiogram as she is still getting very breathless.
Kirsty's dream is to raise as much money as she can for other
poorly children and to have her book published, if you can help me
make her dream come true I would be very grateful.
I find it really hard watching my daughter in so much pain and
wish everyday that I could do something more to help her, she's the
best daughter anyone could wish for and I love her more than words
can say.
Can I say "Thank You" to everyone who
takes the time to sign Kirsty's guest book, she loves reading your messages and
also loves helping those of you who ask for help and advice too.
14th
October 2009:
Since I last updated lots of things
have happened most of what you can
read on Kirsty 2008/2009 link.
Kirsty’s had more surgery to have
tumours removed and was rushed into
hospital very poorly due to
sickness, she spent many weeks in
hospital and after having a number
of test Kirsty was told that she now
has a severe stomach emptying
problem, the tumours in her tummy
are not helping the situation and
she
still continues to be sick every day
after having any fluid. Doctors are
saying she may have to have her
stomach removed. But if it comes to
that we will ask for a second
opinion first.
Kirsty is back in her back brace due
to the pain in her back, Mr.
Oxborrow, Kirsty’s spinal doctor
asked Kirsty if she would consider
more spinal surgery. This op’ would
come with many risks and it’s
something Kirsty really needs to
think about. She recently had a MRI
scan of her spine so Mr. Oxborrow
can see how bad Kirsty’s spine is,
but even having the scan came with
its problems for Kirsty and the scan
had to be stopped as they could not
manage to find a vein to inject the
contrast dye, we are now waiting to
find out what will happen now.
Kirsty knees have worsened too and
when the doctor showed me the scans
the other week I’m not kidding you
but it looked like she had a bunch
of grapes in both her knees. The
doctor wanted to do surgery on both
Kirsty’s knees but she asked if he
could try something else first, so
he agreed to try intensive physio’
for eight weeks.
Kirsty was nominated for the Rotary
Award by the Didsbury Rotary club
and I was pleased to be told that
she had won, the awards was filmed
on TV News back in April. The film
crew had to come and do some of the
filming while Kirsty was in hospital
as she was too poorly to come home.
We were also invited to Glasgow for
the weekend and Kirsty met with boys
from McFly, which really made her
day.
Kirsty started University this term
and is studying TV and Radio Media
and is working on finding a career
that will allow her to work at her
own pace. She cannot sit, stand or
walk for long periods at a time. I
am not able to stand, sit or walk
for long myself and understand how
difficult it is for Kirsty.
Neurofibromatosis may have stolen
some of Kirsty’s physical
capabilities, but she still has her
mind, and everything that she’s
learned in her educational career.
The reason I am telling you this, is
because you may have just learned
that you or a member of your family
has neurofibromatosis. You may only
have a few minor signs—perhaps just
some brown patches on your skin—or
you may have been living with more
serious complications.
Neurofibromatosis can affect the
body in many ways, and it can affect
different people in very different
ways. In some it may be nothing more
than a nuisance, but in others it
can cause important medical
problems.
Kirsty still attends hospital
weekly, is facing the prospects of
having her stomach removed, knee
surgery and more spinal surgery. I
wish everyday that I could take away
Kirsty’s pain and upsets me to think
that Kirsty
inherited
the condition from me, yes, I cry
about it, what parent wouldn’t,
she’s my daughter and love her with
all my heart.
Kirsty’s now got a
car, which helps her be more
independent. But I worry about her
being in the car too. She is still
busy with her fund raising and is
having a spookathon in November to
raise money for when you wish upon a
star, she wants to raise a further
£80.000 so that she can send 30/40
poorly children on a five day
holiday with their families to
Centre Parc’s. I know with her
determination she will reach her
target. Kirsty also hopes to have
her book published which is now
finished and tells her story to date
on living with NF. If you would like
more information on how you can
support Kirsty with her fund raising
please send her an email and she
will get back to you.
9th
February 2010:
Kirsty had some bad cards dealt her
last year and spent many weeks in
and out of hospital due to sickness
as well as attending weekly hospital
appointments.
For all Kirsty goes through she is a
true inspiration to everyone. She
may have Neurofibromatosis but that
doesn't stop her from striving
everyday and touching everyone’s
life in the process. If Kirsty can
help just one person she will.
Living with an illness can be
extremely stressful at any age,
especially when you don’t know what
to expect. Before we take our
daughter Kirsty to her NF
appointments we think about
questions we should ask. Afterwards
we wonder if we asked the correct
questions, and did we ask everything
we should have asked.
Our journey is
far from over in the world of NF, as
with any of the other conditions we
live with..... We have just been
learning to take one day at a time.
Kirsty refuses to let her condition
hamper her ambition to be a TV or
Radio presenter and tries to juggle
her many hospital visits around her
study’s, while at the same time as
keeping up with her fundraising and
helping people who contact her via
her web site. We are very proud
parents.
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 Kirsty or me
and we will both do what we can to
help.
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