Abbie
– Aug 2003 Abbie
& her brother Jamie Abbie
& her friend Molly Jo Ready
for school Eating
cake with Daddy & Jamie July
2004 Fun
in the pool – Aug 2004 Abbie
collects her prize from Gemma Hunt – Jan 2006 |
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Abbie Shaw |
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December, 2002 On the 9th
December, 2002 following a short illness we discovered that Abbie our 21
month old daughter had a tumour in her abdomen which was thought to be a
Wilms tumour. On 17th December 2002 she went to St Georges hospital as an
outpatient for a biopsy of the tumour. During the procedure she was found to
be bleeding into the tumour and a decision was made to remove the tumour
along with her left kidney and adrenal gland. Abbie spent several days in
intensive care at St Georges hospital and was released just a few days before
Christmas and on Christmas Eve she was given her first dose of chemotherapy
drugs. The results of the
biopsy of her tumour were very disappointing. The tumour was much worse than
we could have ever expected as it was actually an adrenal neuroblastoma which
is a more life threatening cancer than Wilms. Also Abbie had NMYC amplification
(meaning the cancer is aggressive with the cells dividing up to 200 times
more quickly than normal). We were very hopeful that we had caught it early
and that any residual following the operation would disappear on its own
accord. July 16th 2003 Not good news
we're afraid. Abbie has had a
brilliant few months - nursery, holidays, swimming, playgrounds etc. She has
been regularly monitored and in June her blood pressure went up and various
tests began to indicate that the cancer had returned. The Marsden booked her
in for an MIBG scan, (which uses a radioactive substance which attaches
itself to these particular cancer cells), which she had a week ago. Lying
still for almost 60 minutes with a large scanner plate just a cm or so above
your body whilst 5, 10 minute pictures are taken isn't easy for anyone at the
best of times but she was an absolute star and with the assistance of a very
long Postman Pat video, she did it. At the weekend
Abbie started limping and developed a droopy eyelid. Her appetite also
rapidly diminished - all symptoms of the return of her condition. Today we
received the results of the MIBG scan.
This shows the cancer is back
and has spread to her bones and bone marrow. This spread means that she has
been put on a very intensive course of chemotherapy for seventy days,
followed by an operation to remove a secondary abdominal tumour, stem cell
removal, high dose chemotherapy, stem cell rescue, radiotherapy and the 6
months of follow up drugs. Looking at the
positives our consultant told us she has treated much worse cases than
Abbie’s that have survived. She is fit and healthy, (which makes this whole
thing even more unbelievable) and only on Saturday morning was running around
the garden at a rate of knots being Abbie! She has an amazing immune system,
(her cancer is the only illness she has had in the last year) and a strong
personality. Treatment of high risk neuroblastomas such as Abbie's has
progressed a lot in the last few years and whilst the survival rate isn't as good
as for some other cancers the new procedures are starting to impact the
results. We are lucky to be just half an hour from the Marsden hospital in
Sutton where she will be treated which is one of the World's leading cancer
hospitals. So it's not been a
good week!!! August 10th 2003 In the last couple
of weeks Abbie has had a Hickman line inserted into her chest; bone and bone
marrow samples taken, a CT scan and has had three doses of chemo with the
fourth due to start next Sunday. Abbie is surprisingly
well, the chemo to date has not had particularly adverse effects. The first
dose did cause sickness and as a result of the chemo her blood platelet count
dropped. She began to bleed from her Hickman line and as the blood would not
clot she required a platelet and blood transfusion at the Royal Surrey. She
then developed a mild allergic reaction to the platelets and as her white
blood cell count is very low, (in medical speak she is neutropenic and cannot
fight infection) she developed a temperature which had to be treated with a 6
hourly dose of intravenous antibiotics. This meant we had to sleep at the
Royal Surrey for 4 nights but fortunately were allowed out between doses. As
soon as she was discharged we drove to the Marsden for two nights of chemo. Abbie has also had
a CT scan under a general anaesthetic. This shows a tumour of approx 5cm x
7cm has grown back in the site of the original tumour - an ultrasound at the
end of May had shown nothing at all so it shows how quickly this stuff
attacks. This news is disappointing as she may require more surgery to remove
it, but is fairly inconsequential in the scheme of things. She is still
Adrenal Neuroblastoma Stage 4, (the most severely spread) and N-MYC positive,
(the most aggressive type) so things can't get any worse. The potassium
levels in Abbie's blood are now very low, so she requires medicine to boost
them. She has been prescribed huge doses of the most foul tasting stuff which
she refuses to take. Forcing medicine on a two year old is very distressing
in such large quantities. We just can't understand why all children's
medicine is not chocolate flavoured. This has meant two trips to the Royal
Surrey just to collect prescriptions and many inventive ways of trying to
disguise it in her food. On a very positive
note Abbie's limp has gone and her eye has improved. She looks very fit and
healthy - you really wouldn't think anything was wrong. She is eating
reasonably well, drinking lots of milk and has minimal weight loss. Most of
her hair disappeared very rapidly last week but neither she, Jamie nor her
friends have batted an eyelid. She appears to need less sleep and no longer
has a daytime nap. Last week I took her to a friends where she had a good old
bounce on a trampoline, went for a picnic at Painshill Park and had tea at a
neighbours. As Abbie's prognosis is relatively poor
we are contemplating having her treated in New York. There is one hospital
which has had better results in treating Neuroblastoma patients using
antibodies from mice with the aim of teaching the body to fight Neuroblastoma
cells itself. In fact the treatment was featured on Trevor McDonald's
programme in June. We have asked her consultant to look into this for us and
will keep you posted. October 15th 2003 Abbie completed
day 70 or the 8th course of her intensive chemo at the end of September.
She's coped pretty well with the intensive chemo with minimal side effects
apart from getting a number of temperatures due to her low blood count
which has led to many more nights in hospital than we would have liked.
(43 nights out of 73) including 2am visits to the Royal Surrey. Over the last week
or so she has been undergoing a number of tests to see how well she has
responded. Thankfully the news is pretty good. The tumour has completely
disappeared and was not detectable on the CT scan, her bone marrow appears to
be clear but there was a small amount of disease detected at the site of the
tumour in her abdomen by the MIBG scan, (radioactive iodine that attaches to
Neuroblastoma cells) and in the bone sample taken from her left hip. We are
hopeful that this should all be taken care of by the treatment still to come. Abbie is in fact
unique at the Marsden as the only Stage 4 Neuroblastoma case where the tumour
has completely disappeared at this stage. This probably has a lot to do with
the fact that her primary tumour was removed in December and she was
being closely monitored following the initial occurrence but is still an
indication of how well she has done. Abbie has just
spent another few days at the Marsden having her stem cells 'harvested'
from her blood. Next week she goes into St Georges, Tooting for a few days to
be 'opened up' to check for any tumour remnants - despite the tumour having
gone they want to double check visually that there is nothing left behind. Once she has
recovered from the surgery she will start the high dose chemotherapy.
Although this only takes a few days to administer it is very strong and
destroys at lot of the function of her bone marrow so following this they
re-introduce her stem cells to help her recover and kick her system back
into life. This means she will be in hospital for at least 6-8 weeks to allow
for the treatment, all the side effects, (which are much nastier this time
due to the higher doses) and for normality to return to her blood. There then
follows 2 weeks of radiotherapy. Following this we
have decided to proceed with an antibody therapy that is only currently
available in one hospital in the States - the idea is that your body is
taught to fight neuroblastoma cells. Our consultant is just initiating
contact with the hospital but it sounds as if they will be happy to accept
Abbie. Will let you know when we have more news. It's a long old
process but it's been nice to see some of the old Abbie return in the
last few days. November 4th 2003 Abbie started high dose chemotherapy at midday on Friday. She now
has a gastro feeding tube inserted through her nose which is used mainly to
administer her drugs but is also used for having overnight feeds to bulk
her up. Despite the fact that the tubes can stay in for 1 month, hers
have already come out three times. Putting them in is a very
unpleasant experience. The first high dose drug she received is Busulphan and
she has had sixteen doses of this through her tube. It's so toxic
that the nurses have to gown up to crush the tablet and everyone has to
leave the room during preparation in case any is inhaled. So far Abbie
has not been too badly affected apart from sickness. Tomorrow she begins
the second drug Melpahalan which is an hours infusion through her Hickman
line or wiggly as she calls it. Then on Friday her stem cells will be
reintroduced to assist her recovery. She is expected to get mucositus
within 7-10 days which is basically inflammation of the entire digestive
tract. We discovered on Thursday that Abbie's hearing has been badly
affected by one of the previous chemo drugs and she has permanently lost her
high pitch hearing. It was very shocking as her hearing was perfect in
July and we had no idea that her hearing had suffered. She has
been fitted for hearing aids at the Royal Surrey, but since
then we have been told that it is unusual for children who lose their high
pitch sounds to be fitted with aids. December
9th 2003 It is exactly a year today that Abbie was
diagnosed with a tumour. We are pleased to say that she has virtually made a
full recovery from her high dose chemo and stem cell transplant and has been
allowed home for the last few afternoons. I am hoping that she will be fully
discharged on Thursday morning which marks 6 weeks since she was admitted for
the stem cell transplant and her 93rd night in hospital over
the year. She has also had 13 blood transfusions and 16 platelet
transfusions and by the end of treatment in Feb will have had over 20 general
anaesthetics. Abbie tolerated the high dose chemo
surprisingly well. The first side effect to kick in about a week
after the chemo was mucositis - her gut had been stripped by the chemo and
she had a few weeks of stuff regularly coming out of both ends in
an array of colours. Amazingly her mouth did not ulcerate, (which normally
happens and causes a lot of pain and discomfort), but she did get the most
appalling nappy rash. Then three weeks after being admitted just as she was
beginning to eat and get back to normal, her liver function began to show
abnormal results and her weight and girth measurement increased showing signs
of one of the nastiest side effects of the chemo - veno occlusive disease,
(VOD). This occurs when the liver gets bunged up and therefore can't operate
properly. In most cases restricted fluids help the liver get better of its
own accord but in extreme cases it is life threatening. Over a 5 day period
Abbie's girth measurement increased by 4 inches and her weight by over a kilo
- she turned into a little barrel and was very uncomfortable due to the
enlarged liver and the fluid that was building up inside her. Thankfully over
the last week her body has returned to normality. After a great deal of research and
consultation with the UK's neuroblastoma experts we have decided to hold off
taking Abbie to New York for antibody treatment for the time being. Abbie has
responded incredibly well to her treatment to date and, assuming the high
dose chemotherapy and the radiotherapy work as expected, the antibody therapy
would appear to offer little in the way of increasing her chances. We have
been told that her response has been one of the best out of all the patients
in the last couple of years and that her chances are now 50/50. Obviously
there are no guarantees. It is heart breaking to meet the parents whose
children are not responding well to treatment when the inevitable lays ahead
for them. I just don't know how they begin to cope. In herself Abbie has regained her sense
of humour and is amazingly cheerful, she is beginning to eat small amounts of
solid food and spends a couple of hours each day running riot around the ward.
On the 20th January Abbie starts 14 doses of radiotherapy, with each one
under a general anaesthetic. The radiotherapy will lose her an inch in her
total height as some of her vertebrae will be hit. On the 6th February she
will have completed the bulk of her treatment and will take '13-cis retinoic
acid' orally for the last 6 months of her treatment. In the next few weeks we are getting
Abbie's left eye checked as we suspected it may have been diseased although
it seems ok now, and a second opinion on Abbie’s hearing to see whether she
actually need hearing aids. We are all really looking forward to having a
normal Christmas. February
5th 2004 Abbie was finally discharged from
hospital on 11th December. Thankfully, she recovered from the mild VOD, (liver
problems) but unfortunately required a daily injection into her thigh to
ensure her blood clotted correctly, (a consequence of the VOD). The last
injection was on Boxing day and we were amazed that the community nurses
volunteered to visit her on Christmas day and Boxing day so we didn’t have to
go to hospital. Despite having 2 Hickman lines, a Portacath and a feeding
tube to access her little body she still had to have this particular drug via
an injection - unbelievable. In early January we received a call from
the paediatric radiotherapy consultant at the Marsden to say that
Abbie's radiotherapy had been brought forward to 12th January. This was great
news but we then sadly discovered that a space had been freed up, as
Naomi, a four year old Neuroblastoma patient that we knew very
well had passed away on New Years Day. For 14 days, Abbie received a
quick dose of radiotherapy under a general anaesthetic. We thought that
the gradual build up of anaesthetic combined with the radiotherapy would
make her tired and sick but she tolerated the radiotherapy very well,
although her appetite has been knocked again. Interspersed with the
radiotherapy have also been a number of tests and scans to re-stage her.
Thankfully the results, (some of which can take an agonising 2 weeks to come
through), are the best we could possibly hope for - a CT scan showed no
sign of the tumour, an MIBG scan showed no presence of neuroblastoma
anywhere in her body, her urine which can reveal the presence of this particular
cancer was normal and both her bone marrow and bone samples were clear.
She is therefore now in complete remission. Last Friday Abbie went up to the Marsden
to have her Hickman lines removed so that marks the end of the heavyweight
treatment. For the next 6 months she will take an oral drug but that is a joy
compared to everything else she's had to take. Remarkably she is the same
weight now as she was when she relapsed but her appetite has taken a knock so
she is still on an overnight feed, (which goes down her nasal
gastro tube), for the next few weeks. This does however make
administering her medicines a piece of cake - every child should have one! Finally on Monday she had her hearing
re-checked - it is now thought that Abbie does not require hearing
aids, but she has lost a lot of her high frequency hearing, (above 3kHz for
the technically minded), so we need to keep a watch on any effect this has on
her development. She spent a few afternoon sessions back at
nursery during the Radiotherapy and is now attending 4 mornings a week as
life thankfully starts returning to normal. There has been a noticeable
change in her personality in the last few days as she begins to enjoy
life again. We are now planning some holidays and hope to be able to
have a social life again! April
27th 2004 Abbie has done really well since our last
update. She has just finished her 3rd round, (of a total of 6), of
Retinoic Acid, a vitamin A derivative, the purpose of which is to kill off
any remaining or newly growing Neuroblastoma cells. This treatment, whilst so
simple and straightforward compared to everything to date, has improved the
survival statistics by 10-15% in the last 10 years. The capsules, (which we pierce open and
mix the contents with fromage frais), are actually the most powerful acne
treatment around and the dose prescribed for Abbie is extremely high. As you
can imagine as we reach the of each 14 day course her skin is extremely dry
and blistered around her mouth but it recovers quickly and it doesn't seem to
bother her. Abbie's high pitch hearing loss
does appear to be permanent but does not seem to be affecting her
too much. At the moment we have decided against having digital hearing
aids fitted but will ensure that her progress is regularly monitored. Abbie has now returned to nursery for
four mornings a week and is thriving. She had her celebrated her 3rd
birthday on 1st March and had a great time at her party with lots of
her friends in attendance. Her hair is growing back well, (slightly darker
than before) and her fitness and appetite returning. We have also managed to
squeeze in a couple of holidays which both Jamie & Abbie thoroughly
enjoyed. November
2004 As Christmas approaches Abbie is on
wonderful form. She is an active and very keen member of Glenesk
Kindergarten. She has been selected to be a cow in the school nativity play
although she is a little disappointed that she’s not a donkey. She is
now learning to read and can already write her name which was completely self
taught - not bad for a 3 year old. Abbie now attends swimming, dancing and
gymnastics which she is really enthusiastic about. Her hair has now
completely grown back and is a mass of brown curls rather than the blonde
wavy hair she had before. December marks two years since Abbie was first
diagnosed. Although that time has gone enormously quickly it seems like
another life time ago. We are still attending the Marsden regularly but at
the moment everything seems to be OK. July 2005 Some of you will know that for the
past three months, Abbie has had her leg in plaster. On the 21st March
following a routine check up at the Marsden where she was given a completely
clean bill of health Abbie attended a party at a soft play area. By the
evening she was limping. I telephoned her consultant the next morning who
said she was in fantastic health and it was probably nothing to worry about
but as we were due to go to on holiday to South Africa I decided to take
Abbie to casualty. Despite being referred up to the children’s ward and
several doctors examining her she was given a clean bill of health but due to
her previous medical history she was given a urine test which came back a few
weeks later as completely clear. The limping however continued and when
we arrived back from holiday she was x rayed and it was found that she had a
tibia stress fracture. Abbie was put in plaster for 2 weeks
but after the plaster was removed it was obviously not right
and was put back into plaster a few weeks later. After another few weeks
her leg x rays looked worse which we felt was because the initial plaster was
removed too quickly, and her treatment had been mismanaged, however she was
also referred to a pediatrician at the Royal Surrey. On examination he
discovered a small lump in her bowel which he believed was constipation so
Abbie was put on Lactulose for a week or so. Another urine test was done and
we were also referred back to the Marsden. At the Marsden they x rayed her
leg and gave her an ultrasound but saw no significant signs of relapse but
initiated another urine test. Unfortunately the results from this
test indicated her cancer was back and we were told on 22nd June that it
was extremely likely that she had relapsed. Mike and myself have been in
total disbelief because Abbie has been so incredibly well and had displayed
none of the relapse signs that we have encountered before. Abbie spent
last week having more tests - a bone and bone marrow biopsy, a CT scan and a MIBG
scan. A blood test last week revealed she had low platelets which was a
poor sign and at lunchtime today after two incredibly tearful and
stressful weeks, Mike and myself received final confirmation that
Abbie’s cancer has extensively returned spreading to her leg and bone marrow.
There is also Neuroblastoma disease within an enlarged lymph node
(4cms) near her left groin. This afternoon, Mike and myself have been
to the Marsden to discuss treatment options with her consultant. As Abbie has
relapsed her prognosis is very poor. There are very few children who relapse
from Neuroblastoma having had the treatment that Abbie has already received
and have survived. We visited the Marsden not knowing if they could
offer us any further hope or treatment. Fortunately as she has been off
chemotherapy for 21 months there is still a chemotherapy option available to
us which gives us a slim hope that we may still be able to save Abbie’s life.
It means Abbie will need another Hickman line inserted and entails seven days
of treatment every month for 4 months, with 2 nights out of the 7 in
hospital. She will lose her hair again and will have to endure the same kind
of side effects that she has suffered from in the past. If the chemotherapy
works we may also be eligible to start a trial for an Antibody which may
teach Abbie to fight the cancer herself. We feel that this is her best option
for fighting this awful disease. The antibody is a similar treatment to the
one we considered taking Abbie to the States to receive last year. It is so
new to the UK that the trial will only be available from the Autumn. We are
lucky that treatment options available have already vastly improved in the
years since she was first diagnosed with this cancer. On the downside if
Abbie does not respond to the treatment initially, she will be taken off
chemotherapy and given lower dose care to give her the best quality of life
but it will only prolong her life for as long as possible. Abbie will also
receive radiotherapy to her leg as soon as possible so that the
fracture begins to heal and hopefully she will be able to come out
of plaster before the initial chemotherapy commences. Despite the news today being
disappointing it was expected and has put us out of misery. We are now
looking forward to the treatment beginning and despite there being a slim
chance that it will work has at least offered us a glimmer of hope in a very
dark tunnel. We are also thankful that we have had 18 fantastic months
to enjoy Abbie. Other parents we know were not so lucky and never managed to
achieve remission first time round. This will be our third attempt. In light of Abbie’s relapse Mike and
myself have decided to have both Jamie and Abbie christened at St Martin‘s
church in East Horsley. This has been provisionally booked for 17th
July at 12.30. This will go ahead if it does not interfere with her treatment
plan. We are hoping that will be a really happy event - a
celebration of both their lives. To avoid it becoming to overwhelming for
them we will be inviting close family and Jamie and Abbie’s friends and their
parents. 24th July 2005 A lot has been happening in the last
couple of weeks - so here's as brief a summary as possible of her treatment. Following our meeting with Abbie's
consultant on 4th July we had to wait a whole week before treatment started. Saturday 9th July a canular was inserted
into her arm and bloods taken from it. Sunday 10th July - Due to a lab error
Abbie had to have more blood taken for a blood cross match. The canular would
not work so she had to be pricked again. Later in the day she had a blood
transfusion through the canular at the Royal Surrey which took seven hours as
she had a simmering temperature. Monday 11th July - Echogram at the
Marsden to check her heart can cope with more chemo. Another prick and
another blood test because the Royal Surrey forgot to check her blood
clotting on Sunday. Blood had to be squeezed out of her arm because they
could not get an adequate sample. How upset and angry was Abbie and how furious
was I at this point! She then received a platelet transfusion at the Marsden
followed by an operation to insert a Hickman line at St Georges. Abbie was so
distressed that she went into shock and was sick on the way to St Georges.
She then developed a temperature and it was touch and go as to whether she
could have the op. Also St Georges tried to cancel the operation as they were
running late but luckily the surgeon insisted that they go ahead when her
temperature came down. Tuesday 12th July - Radiotherapy planning
( On arrival I am told they need to tattoo her leg with 4 pricks).
Fortunately because Abbie is so upset they decide to use pen marks instead. A
last minute radiotherapy slot becomes available so Mike dashes down to the
Marsden to help calm Abbie down. Wednesday 13th to Friday 15th July -
daily radiotherapy on her leg - Abbie has to lie still on her own in the
radiotherapy suite for 2 x 2 minute periods whilst her leg is irradiated. We
are able to see her on video camera and talk to her via microphone. Monday 18th July - final radiotherapy
session to leg, a platelet transfusion, her first chemotherapy of Topotecan
and a ultra sound of her leg to check for blood clots. Tuesday 19th July - Visit to Royal Surrey
to get her leg put back in plaster then straight to the Marsden for her
second dose of Topotecan plus a blood transfusion. Wednesday 20th, Thursday 21st July -
third & fourth chemotherapy Friday 22nd - Admitted to the Marsden for
2 nights for her fifth Topotecan plus a 48 hour infusion of two other chemo
drugs. We arrive at 9.15am and are told there are no beds available. Also her
Topotecan has not been dispensed so we have to wait until 2.30pm before
anything happens. The doctor who saw Abbie on Friday neglected to take bloods
and so on Saturday when a blood test is done everyone is shocked to realise
that her HB has fallen to 5.8 and her platelets are only 5. I don't ever
remember her blood count being this low before. Abbie is also now Neutropenic
which means she can no longer fight infection. Her low blood count means that
Abbie had a blood and platelet transfusion on Saturday and a further blood
transfusion on Sunday. On the positive side Saturday night was the first time
in about 2 weeks that she did not get a temperature at night. Given that the
Neuroblastoma has probably been causing the temperatures this is a good sign.
Also we had been told that we would have to take her straight form the
Marsden to Royal Surrey to start antibiotics as she is neutropenic and
febrile but luckily as she didn't spike last night we are now at home. Abbie has been very traumatised by the
treatment and last week we felt she was beginning to go downhill. She had
been excessively tired and withdrew into herself with her sparkle well and
truly gone. Last weekend some large bruises appeared on her left leg and
thigh - these were partly due to her low platelet levels, the cancer has also
been progressively kicking in with her left eye drooping slightly, night
sweats, temperatures and constant nagging pain, particularly at night which
has prevented her and us sleeping well. On Sunday she seemed to hit rock
bottom and hardly moved all day and completely stopped eating. Over the last
couple of weeks her left thigh has been swelling up and it was decided on Monday
she should have an ultrasound to check there wasn't a blood clot. It has
turned out to be another enlarged lymph node in her leg so yet another sign
of the cancer. The last four days have been much more
positive - she is eating small amounts has been more cheerful and now needs
very little in the way of pain relief. Her leg is back in plaster following
the radiotherapy and she is delighted with the luminous pink plaster the
Royal Surrey ordered especially for her! She spent Wednesday afternoon at a
party on very good form and on Thursday afternoon spent 2 hours at Holiday
Club at Glenesk. Mr. Bishop tells me that she was the perkiest he has seen
her for some time so hopefully that means the chemo is working. We have now completed this cycle of chemo
and need to wait until her blood counts recover before repeating the chemo
cycle in about 3 weeks time. We are hoping that the chemo will begin to work
and reduce the enlarged lymph nodes. If her leg improves we know that the
chemo is probably working. We have arranged a meeting with Andy Pearson on
Wednesday morning. He is now head of the children's dept at the Marsden in
Sutton and is also the UK's leading neuroblastoma expert and probably the
leading expert in Europe. I briefly met him on Friday without Mike and he
tells me that Abbie is the first relapsed neuroblastoma patient at the
Marsden to be offered these phase 2 trial drugs and probably the
first child in the UK. We did not know until last Tuesday that
the radiotherapy and chemo could not be given together so we cancelled Abbie
& Jamie's christening last week thinking that we would be on the ward. We
have now postponed it until 14th August. In actual fact it was just as well
as Abbie was so poorly last Sunday. I am really hoping that by 14th August her
leg might even be out of plaster. Finally Claire Attard and other friends
are organising a big Fund Raising Event for Neuroblastoma Research on 21st
September, so if you live locally please keep it free. Details to follow
soon. Thanks for all the letters, cards, texts,
e mails etc etc. We really appreciate having such fantastic support from our
friends. 22nd August 2005 Abbie completed her first round of chemo
on Sunday 24th July. On the following Tuesday we went to the Marsden for
a GCSF injection which she is given daily to help her blood
count recover after chemo. While we were there Abbie spiked a
temperature and we ended up staying a week at the Marsden and were
then transferred to the Royal Surrey for 2 nights. Abbie
had a staphylococcus line infection which meant she had to have IV
antibiotics 4 times a day for 2 weeks. After being released from the Royal
Surrey we have had a fantastic fortnight. Abbie has been very well
- no temperatures, no pain, eating well and enjoying life. Jamie and
Abbie had their christening last Sunday and Abbie was on great
form. The following day she began her second round of chemo and on
Friday was admitted for her 48 hour infusion. Unbelievably she was positively
looking forward to sleeping over at the Marsden. We were discharged this
afternoon. Things were all a bit grim at the
end of last month. We saw Prof Pearson the European neuroblastoma
guru at the Marsden a few weeks ago. He told us that there are no cases
of relapsed MYCN positive (the aggressive type of neuroblastoma which Abbie
has) children surviving long term and that we need a miracle to save
her. This news combined with the fact that Abbie was quite unwell and
miserable made Mike and me feel quite depressed about her condition. On the
positive side Prof Pearson did say we were in the best place for a
miracle to happen. The general feeling is that because she has
relapsed after so much treatment already it is likely that even if she went
back into remission she will relapse again. There are however new treatments
that we can try to help prevent Abbie relapsing again including a radioactive
bullet to target neuroblastoma cells and also the antibody treatment we've
mentioned before. We already know that the chemo is
beginning to work. Her leg swelling, (due to an enlarged lymph node), is now
completely normal, the swollen lymph node in her groin seems to
have gone and she is beginning to put weight on her broken leg. In fact
she took a few steps tonight. She is in very good spirits, she is
eating really well and since her christening has had her nasal gastro tube
removed. This round of chemo has barely affected her - no sickness yet,
no mucositus, (last time she bled from the mouth) and most importantly her
blood counts are pretty good despite having had a week of chemo. Her last
blood transfusion was over a week ago. This indicates that her bone
marrow is working quite well. On 1st , 2nd , and
5th September Abbie will have bone and bone marrow taken, a MIBG
scan and a CT scan to see how much the cancer has regressed. Fingers crossed
that her bone marrow will be clear. That is the best possible result we could
hope for. Will let you know when we have more news. 8th September 2005 As you may be aware Abbie has recently
had two scans and bone and bone marrow taken to see how she is
progressing. The results of the CT scan showed a good partial response. The
MIBG scan also shows considerable reduction of disease. There is still
disease in both of her tibia's and her left thigh and groin but this is only
residual. When they took bone on Monday they were only able to extract it
from one side of her back. We do not have the result yet but we would not
expect the bone trephine to be clear yet. The results of the bone
marrow (aspirate) are that it is now clear. This is a fantastic result
especially so early on in treatment, although we are aware that she also
achieved an outstanding response two years ago and still relapsed. Having a
clear bone marrow does however open up other avenues of treatment
and technically it would be possible for her to have a second stem cell
transplant if required. We are meeting Abbie's consultant next
week to discuss every possible treatment we can give her to prevent her
relapsing again should we get her back into full remission. Abbie in herself is on fantastic
form. She did get a temperature after her last round of chemo which meant us
staying in hospital all over the bank holiday and overnight for a further
couple of days. We have resigned ourselves to the fact that an unusual side
effect of chemo for Abbie is getting a temperature and therefore being
put on IV antibiotics. Since then she has recovered in leaps and
bounds and has the most amazing appetite at the moment. Over the bank
holiday the physio at the Royal Surrey suggested her using a walking frame to
get her back on her feet. Abbie is very proud of her zimmer frame which
we painted pink and put a Barbie bell on. She took her first few independent
steps a week later and since then has started standing and walking more and
more. Today Abbie went back to school for her
first morning in Reception. Round three of chemo starts on Monday
and we are hoping she should be able to attend school every morning next
week and have chemo in the afternoons. We are also hoping that her plaster
will be removed on 21st September. This would be a fantastic psychological
boost for Abbie. Her leg went into plaster on 7th April and frankly she is
fed up. 14th October 2005 Since we last e mailed Abbie's leg has
been taken out of plaster. Her leg is slightly deformed and she walks with a
limp but it's possible that as she grows the deformity will even itself out
and become normal. We also received the results of the bone trephine (you may
remember we did not expect it to be clear). Amazingly it was clear - we
were delighted as her response would appear to be better after two rounds of
chemo than her intensive treatment two years ago. Surprisingly even though
Abbie's response has been the best we could possibly hope for, her
long term prognosis remains poor as Neuroblastoma has a habit of returning.
We still live in hope and the fact that she is still being treated and
responding is a good sign. Abbie returned to school in September and has only
missed four mornings so far this term which is truly amazing all things
considered. As Abbie's bone marrow was clear we have
decided to pursue higher dose treatment, namely MIBG radioactivity and
Topotecan with stem cell rescue. This week Abbie has been having a stem cell
harvest. This entails having a vasocath inserted into her groin under a
general anaesthetic and stem cells harvested from her blood over a period of
a few days which are then frozen for future use. The harvest was completed
quicker than expected and we were released yesterday. Abbie is now due to have a fourth round
of TVD chemo and will have further scans on 8th and 9th November. The best
result we could hope for is that they are now completely clear or MIBG
negative. The following day we are taking Jamie & Abbie to Euro Disney
for a few days. We are now looking at early January to
commence the MIBG radioactive treatment and this should be complete by mid
February. In between now and then she will have a fifth round of TVD chemo. Finally, just to let you know that the
Autumn Event was an amazing success with over £52,000 raised with another
£20,000 donated from a charity fund at the Brompton Hospital. There is also
money pouring in from donations, a fashion show, bike ride, marathon and
coffee morning. Mike had a meeting with Andy Pearson (the fountain of
Neuroblastoma knowledge) on Tuesday and has brought to his attention a new
drug which is being developed by a Canadian company called Pharmagap.
Pharmagap are going to be invited to present their findings to a
meeting of Neuroblastoma experts and we are hoping that the money in Abbie's
Fund may be used to fund further research. Thank you to everyone involved in
raising money or attending events for Abbie's Fund - who knows we could
be close to helping to fund and find a cure for this dreadful disease. 14th November 2005 Last week Abbie had a CT scan and an MIBG scan.
Fortunately, as she is now clear of disease in her bone and bone marrow
it is not necessary to do the bone trephine and aspirate tests. The
results of the CT scan showed that the lymph node in her groin on the left
side has continued to reduce in size but may still be slightly enlarged. The
MIBG scan also shows some evidence of existing disease in her left groin and
also existing disease in her left upper tibia or knee. We are reasonably pleased with these
results - she is continuing to respond to the TVD chemo, and has so
far showed a very good partial response. We are getting close to her
having a completely clear scan. Abbie will start a fifth and final round of
the TVD chemo on 21st November for a week and then she will be free to enjoy
Xmas and the New Year until 9th January when she will commence the high
dose MIBG radioactive treatment. This will be administered over two
periods in January and she should be allowed out between 17th-23 January. Her
stem cells will be thawed out on the 1st February and reintroduced to
her blood stream on 2nd February. She will then remain in hospital for a
further three weeks or so to ensure her full recovery. We are hoping she
will be out by 22nd February. It is her fifth birthday on 1st March so
with a bit of luck she will be on fine form and back at school for that. We do not have any news of the antibody
trial yet but we think Abbie can get three doses as part of a phase 1 trial
on compassionate grounds over a period of three months. In the last few days we have taken Abbie
and Jamie to Disneyland. Abbie was given VIP status which meant we
never queued for a ride, were always given the best seats, were allowed
to stay on the rides for more than one go, met the cast of the Lion
King and best of all every Disney character made a huge fuss of
her. They both had a fantastic time and its a memory we hope they will
both have until their old age. 20th January 2006 Sorry we have not sent an update for ages but
we have had no definite news so this one is a little long. Abbie completed her fifth round of the TVD chemo
back in November. Unfortunately in early December she tripped and broke her
leg again in the same place and so is now back in plaster. The following
day she developed another temperature which was related to a
previous line infection and so was put on very strong IV antibiotics
four times per day which meant overnight stays at the Royal Surrey
for two weeks. Fortunately the line infection cleared - we were told if it
had not cleared she would have had to have had an operation to remove
her Hickman line and a further operation to have it replaced. Abbie also had another
scan just before Xmas which showed that the disease in her knee and groin had
not changed since the fourth round of chemo. Xmas was great and Abbie
was the picture of health. On 10th January Abbie was admitted to the Marsden
to start the first round of the double MIBG/Topotecan. Originally we were told that a child as young as
Abbie would need to be sedated for the treatment however it was then decided
that she would cope OK. Abbie was injected with a very high dose of radioactivity
on 11th January and put in an lead lined room. For five days Mike
and myself had to gown up and carry a Geiger counter every time we
entered the room. The most stressful day was the first day when I
clocked up well over the daily limit on the counter mainly because I couldn't
get her web cam or DVD player to work. After that the radioactivity
drastically reduced. Abbie tolerated the treatment exceptionally
well and was allowed home the following Saturday. Jamie had to stay away
from home until Tuesday to ensure it was safe for him to have
contact with her. Abbie had a series of scans last week. The first one
showed enormous take up of radioactivity in her left leg - Mike realised that
this was her plaster cast which had become more radioactive than Abbie.
Her scan on Monday looked completely clear but these scans are not diagnostic
scans so it is hard to say whether Abbie is in remission. If she is not in
remission she is very close. Mike also had a meeting with Andy Pearson the UK
Neuroblastoma expert last Tuesday. He feels that it would be wrong to give
Abbie the antibody as there is not sufficient evidence to suggest it works.
Mike and me have deliberated on this point for a long time and have finally
come around to thinking that he is right. Limited results to date suggest the
treatment does not offer any advantage but in another few years it
may have been developed further. Abbie will however receive a new
protocol of Retinoic Acid. This is the high dose Vitamin A acne treatment she
took before for 6 months. This time she will take it for 12 months and
hopefully this time we will be able to give her capsules which are slow
releasing. Retinoic acid has been proven to stop relapse by about 10%. Next Monday Abbie is admitted to the Marsden again
for the second MIBG/Topotecan. We are expecting this to knock her more than
the first dose. Abbie is scheduled to have her stem cells re introduced on
2nd February to assist her recovery. Mike and me are very pleased that Abbie is in
virtual remission. It would be nice to get confirmation from the Marsden that
this is the case. We are however aware that there is a very strong chance of
further relapse and realistically the odds are stacked against her. Abbie recently won a Xmas calendar drawing competition
held by by the David Adams Leukaemia Trust and was presented with
her prize by Gemma Hunt from CBBC (see picture below). The Marsden
have now asked permission to use Abbie's drawing for one of their
own 2006 range of Xmas cards. Naturally Abbie is very pleased with
herself!! 25th
April 2006 Unbelievably It has been 3 months
since our last update. Abbie tolerated the MIBG treatment pretty well - the
worst side effect was a low platelet count for a few weeks. A week last
Thursday Abbie had a MIBG scan. Mike and me were pretty shocked to see that
there was 3 spots of disease evident on the scan. Two on her left knee and
groin and a further new one on her left shoulder. The following Tuesday we
were given the news that there was also faint uptake in the right arm
and leg. We have been told that there are no
curative options available at this stage. Mike and me are hoping that the
Marsden will give radiotherapy on the three spots we saw on the scan and
that the Cis retinoic acid that Abbie is currently taking deals with the
other disease. We will probably also consider a maintenance drug in the hope
that this will prevent the spread of disease without making Abbie too poorly.
Realistically we have done absolutely everything humanly possibly do to
fight this disease and yet it still keeps coming back. I have a meeting with Abbie's consultant
on Thursday to discover what palliative options are now available and of
course we pray for a miracle. In herself Abbie is really well. She went
back to school last week and has managed three full days. Her leg is
improving all the time as the bone gets stronger. Abbie and Jamie are
blissfully unaware about what is going on which is how we would like to keep
things. For that reason if you do call it would be preferable to ring after
9pm when they are both in bed. 15th
June 2006 Since April Abbie has been taking cis-Retinoic
acid (the acne treatment). The side effects have been pretty grim with Abbie
feeling really depressed and having very dry skin around her face and lips.
In the middle of May we decided to book a holiday to Spain for the half term
and typically a couple of days later Abbie came down with a temperature and
once again went on IV antibiotics. Luckily we only had to stay in the Royal
Surrey for one night and her treatment finished the day we flew out. She also
began to complain of pain in her leg but we realised on holiday this was due
to the plastic support caste she was wearing which was rubbing on her leg. Amazingly during our holiday she was the
best we had seen her for ages running up and down the beach, experiencing no
pain, walking normally and eating really well. Abbie loved the dolphin show
we took her to see, (see below). The day after we got back she started her
third round of cis-Retinoic acid and within two days began limping again and
complaining of pain in her ankle. We were convinced that this was due to the
side effects of the cis-Retinoic acid. She was seen at the Royal Surrey
by her physio who suggested a leg X ray. This showed that the bones
in her ankle and knee were in better condition than the X rays last
taken in April. However her reflexes showed a poor response and a day later I
was contacted by Abbie's consultant at the Royal Surrey who wanted to see her
immediately as he was concerned that there may be a tumour compressing her
spinal cord. She needed an emergency MRI scan as a tumour on the spine needs
to be dealt with immediately. Fortunately there was no tumour on the spine
but on Tuesday Abbie's consultant at the Marsden told me that the MRI scan
clearly showed a tumour on her pelvis. Today Mike and myself took her to the
Marsden were it has been confirmed that there is a 6cm tumour on her left hip
which may be indirectly causing the pain she is experiencing in her
ankle. They also believe she may have bone marrow disease but do not think
that it is too bad yet. In terms of treatment we have been
offered radiotherapy to the hip which should take place next week and she
will also probably be put on a maintenance drug to keep her disease at bay
for as long as possible. We have also asked whether she could have two rounds
of Topotecan the chemo drug she had throughout last year as this was very
effective but the feeling is that this will not be of any great benefit to
Abbie at this stage. In herself Abbie is fine. Now she is off
cis-Retinoic acid she is no longer depressed and as long as we manage her
pain relief she is happy and attending school be it only for a few hours now
each day. The last few days she has also been sleeping in the
afternoons. We recently arranged for Abbie to have her
"wish" granted by the Make a Wish Foundation. She has asked to be a
princess for the day and to ride a pony. Last Saturday she was taken shopping
to the Disney Store in Guildford in a pink stretch limo to choose her
princess outfits and Jamie and herself were given free run of the shop to
choose anything they wanted. The Disney staff then carried her shopping back
to her limo. This Sunday her pink stretch limo will collect us and take
us all to the Nutfield Priory which is a country mansion fit for a Princess
where she will be shown to her suite. She will have a special Princess menu
for lunch and in the evening her butler will serve dinner to her. On
Monday morning we will be collected and taken to Bookham
where Abbie will ride Cathy her princess pony. The following Sunday
Abbie and Jamie are guests of the Queen at her 80th birthday party at
Buckingham Palace. 29th July 2006 The past six weeks has been an emotional
roller coaster with a continual wave of ups and downs. Abbie really enjoyed her 'Make a Wish'
back in June at Nutfield Priory. She came down with a temperature for a few
hours on the Sunday at the hotel but was well again in the evening when the
butler served her princess menu. She started radiotherapy to her hip her
on the Monday and became quite unwell and stopped walking again.
The radiotherapy was completed on the Friday and Abbie and Jamie attended the
Queens birthday party on the Sunday with Mike, Aunty Susie and myself. The
following week Abbie started palliative oral chemotherapy. She takes
Etoposide and Cyclophosphamide for three days every week for three weeks and
then has a week off. Fortunately Abbie has always responded well to
chemo and a few days after starting the chemo became well again and
began to walk again. The side effects seem pretty minimal and the blood
transfusions have become less frequent - sometimes the gap is up to two weeks
but Abbie does seem to need platelets weekly. In the first week of July Abbie
was involved in two school concerts and sports day where she won a race in a
high speed buggy. The second and third week in July Abbie was
on great form and we completely weaned her off morphine and Calpol. We
went on holiday to Hastings for a week which she seemed to really enjoy and
went swimming daily. The following week she managed three days in
school holiday club with Jamie. Unfortunately the oral chemo has caused her
hair to fall out again which was a bit of a surprise to us all. Abbie has
taken it very well and blames it on the hot weather. Last night the hair
fairy came and gave her a princess alarm clock. The oral chemo therapy cycle stopped for
a week and after seeing Abbie's consultant at the Marsden we decided to
delay chemo for a second further week as Abbie was neutropenic and her blood
counts needed to recover. We were also going on holiday to the New Forest
with all her cousins. The delay to the chemo meant Abbie became
very poorly again very quickly - all the signs of neuroblastoma came
back very quickly - temperatures, night sweats, vomiting, excessive sleeping,
pain and general misery. She also developed a dark circle around her
right eye which is a neuroblastoma sign. Very quickly we had to put her back
on morphine and on Tuesday last week I had to take her to the oncology ward
at Southampton hospital where she had a platelet transfusion. The following
day I was really worried about her. With hindsight I now realise she was
morphine'd up to the eyeballs as I had just started her on higher dose slow
release morphine, but I really thought at that point she only had a few days
left. I managed to wake her and took her home on Wednesday
morning. Thankfully her blood counts had recovered enough for her to
start back on the oral chemotherapy. Again it has worked miracles. Four
days later and we are now gradually reducing her morphine again, she is
awake most of the day, has started eating again (although only small
morsels of food - which is an improvement on no food at all), and is enjoying
life again. Considering she has not eaten anything much for about four
weeks she is not as skinny as you might think. I blame this on the slow
metabolic rates of her parents! Hopefully Abbie will be well enough to
have a further holiday this summer but we are waiting to see how she is
before making any commitments. Naomi Velden's mum sent me an e mail last
week to tell me of a lady who is doing a sponsored blog for Neuroblastoma
this weekend. Abbie has now joined the list of Neuroblastoma sufferers and if
your interested or just want to know what a blog is click on the following
link http://bloggingforchristi.blogspot.com/ 31st
August 2006 Again this month has been full of
highs and lows which has followed a pattern of Abbie taking
oral chemotherapy. Just three weeks ago she was the best we had
seen her for sometime. She went to a party, ran around, played games and went
for a swim. Two weeks ago we took Jamie and Abbie to Sandbanks in Poole
where she was well and spent 2 hours on Tuesday evening at the disco -
dancing and playing games. We came home on Wednesday evening and took her to
the Marsden on Thursday. Her consultant examined her and found a large new
mass in her thorax and a number of lesions on her skull. Her left eye
has also been affected by a lesion and she has lost 2kg in weight. Her
consultant was quite shocked by the deterioration in Abbie. She told Mike and
myself to expect the worst as a bleed caused by low platelets or tumour could
cause a coma at anytime. We have also been given a box of IV drugs for
emergency as we have decided to keep her at home rather than to go
to a hospital or hospice. Abbie is very ill now. She has been
robbed of everything life has to offer. She is tearful and in pain and sleeps
much of the time. This morning we discovered a tumour in her mouth has caused
an adult tooth to push out at a right angle. We have also realised in the
last day or so that she is severely depressed. We do get occasional smiles
when we talk about happier times in her life. It is very painful seeing her
so distressed and in so much misery but we know that she will not have to
endure the pain for much longer. Jamie is now aware that Abbie will die
shortly and now is probably the most appropriate time to tell your own
children that Abbie will die soon. Hopefully you will be breaking the news
more gently than by telling them after her death. Jamie has been
amazingly accepting of this news but will not discuss it any further.
Abbie has not been told that she is dying and we would rather she
remained unaware. 11th
September 2006 – The Final Chapter Our beautiful daughter Abbie died at 7.36
am this morning. After a fairly restless night she began to experience
intense pain in her leg at 5.30am this morning. I managed to give her a dose of
oral morphine and at around 6.00am I climbed into bed with her and was
comforting her. At around 6.45am she began to fit and I was able to cuddle,
comfort and reassure her. This was the first time in a while that I had been
able to cuddle her as she had been in too much discomfort. Mike took over
while I had a bath, then Jamie who was getting ready for school went to her
room to say goodbye and she just died. We are truly devastated that we have lost
our child but pleased she is no longer suffering. It is a real comfort to
know that only five weeks ago she was playing, running and swimming at a
party and this time four weeks ago spent 2 hours disco dancing. Last Monday
she made flower shaped biscuits, on Wednesday made a supermarket till
out of boxes and collected Jamie from school and Thursday painted egg
cups. On Saturday morning we took her for a walk in her buggy to the local
shops and she insisted on renewing her library book. We have arranged Abbie's
funeral on Friday at 2pm at St Martins Church, Ockham Road South,
East Horsley. The funeral service will be child friendly. We are requesting
that children wear their school uniform and bring a flower (unwrapped)
from their garden. These will be collected and scattered on Abbie's casket when
she is buried. We also request family flowers only but
donations may be made to Abbie's Fund which will shortly be becoming a
registered charity. Adults may wear some pink if possible. We do not want
Abbie's funeral to be too sombre - as Mike says he wants Abbie to look down
and wish she was there. Immediately after the service Abbie
is having a private woodland burial in a natural burial ground with only
immediate family. The concept of a natural burial is to return the body back
to nature. The site will be marked by a tree and bluebells. A tribute to Abbie by her Daddy A Celebration of Abbie –
Order of Service Abbie’s
Fund Abbie's fund was set up by a number of our friends
last year. The charity is shortly becoming registered and has a number of
nominated trustees. The main objective of the charity is to raise funds for
Neuroblastoma Research with the aim of finding a cure. If you wish to donate
then please send it to: Abbie’s Fund Rowbarns Cottage Green Dene East Horsley KT24 5RG UK Abbie Elizabeth Shaw 1st March 2001 – 11th
September 2006 |