This is an open letter we sent to family and friends on the 27th of March.
AMC
Hospital Amsterdam,
March 27
2004.
Dear
All,
First
of all let me apologise for writing to you all at once, I suspect it will be
some time before I can find the time to do something more personal.
At this time of writing none of you will have heard the dreadful news
that Rene and I have had to accept in the last couple of days. If Mam and Dad
have had the time to contact everybody since returning home you will have some
idea what I am about to tell you.
As you
know Philippa was admitted to hospital two weeks ago to have a tumor removed
from her left upper arm. The surgery went very well and we were able to go home
a day later. The tumor was sent for analysis and we were told that we would
receive the biopsy results within a maximum of 10 days. The waiting was
unbearable and on the tenth day my impatience got the better of me. I called the
plastic surgeon who had done the operation only to be told that the cells were
still being stained and that we would hear from her or from the oncologist very
soon. We should have seen the
writing on the wall when she mentioned the oncologist but as parents you hope
against hope that the news will be good. The
next day (Tuesday) we were contacted by the oncologist and were told the
devastating news that the tumor that they had removed was a lymphoblastic
lymphoma and that chemotherapy was the only solution. Just when I thought that
the news couldn’t get any worse she explained that she wanted us to come to
the hospital the next day for a lumbar and bone marrow puncture. The reason for
this was to discover if any of the cancer cells were also in the central nervous
system or in the bone marrow. In
the space of 10 minutes I had gone from nervous to terrified. First we thought
we were dealing with something one-off which would end if the tumor was removed
and there was no ‘bad’ tissue left in the arm.
Now we were looking at a disease which was affecting every cell in her
body.
The next
day the lumbar and bone marrow punctures were done which are exceedingly painful.
Philippa received medication beforehand called Dormicum which meant that she
would not remember what she had been through, the procedure itself is done
without anaesthetic, only a cream is applied which numbs the skin. We also had
an appointment with the oncologist to talk about the condition which Philippa
has and it was at this point that the full impact of the situation became
apparent. The lymphoma which they removed was a cluster of unripe Pre-B cells,
white blood cells. Although they had been able to remove the lymphoma cleanly
there was no saying where else the cells could be and if untreated the condition
could return elsewhere as another lyphoma or leukemia.
The condition was extremely rare in small children and in order to
achieve the best prognosis she would have to undergo the standard leukemia
chemotherapy. This is a two year therapy; the first 6 weeks are very intensive
of which the first week in hospital. After that another period of 6 weeks when
the central nervous system is cleaned and then a long period of maintenance
treatments. This was unfortunately not dependant upon the results of the
punctures. If the cancer cells were also found in the central nervous system or
in the bone marrow then the treatment would be even more intensive.
We decided to cross that bridge when and if we came to it.
We would receive the results by telephone the next day between 4pm and
5pm.
As you
can imagine the next day was a nightmare. My heart was pounding all day and each
time the telephone rang I jumped out of my skin. Eventually the call came at
4.30 pm to tell us the fabulous news that both results were clean and that she
could start the chemotherapy the very next day (Friday).
It is
Saturday today and that telephone call seems like a week ago. Since she has been
here we have been bombarded with information and Philippa has had the first
doses of the four drugs she is receiving. This condition is so rare that there
is very little information written about it for the lay man. Most is in the form
of research papers and Dr.van der Wetering, the oncologist said she was going to
contact a fellow specialist in the USA to see what information s/he had.
Philippa had her first dose of drugs in the form of a lumbar puncture and had to
lie flat for two hours afterwards. She also had other drugs administered via the intravenous drip.
She was very nauseous as a result but had additional medication to counteract
this. All in all it was a full day with very many things to get used to.
Rene is sleeping next to Philippa every night while she is here and I am
staying in what they call the Ronald McDonald House because I am still feeding
Benjamin and he cannot sleep in the ward because he may disturb the other little
girl. The RMcDH is a fabulous
system which may also apply to Britain. It is a totally charitable organization
which builds a kind of youth hostel like accommodation next to hospitals so that
parents can be near their sick children.
Sunday
28th March 2004
Philippa
had a reasonable night. She had to go to the toilet twice during the night as a
result of having 2 litres of fluid pumped into her on top of what she is
drinking during the day. This is in order to prevent the medicine damaging her
kidneys. We have to record every millilitre that she drinks and every thing she
eats. We were worried for a while earlier on today because her temperature
started to rise, we were concerned that she was developing an infection. Luckily
it fell as quickly as it rose. Each afternoon that she has been here she has
fallen into an extremely deep sleep for about two hours and wakes up drenched in
perspiration. For a while afterwards she is very floppy and confused, under
normal circumstances I would leave her to come to slowly and not worry but at
the moment we are watching her every move and maybe worrying too much.
It is difficult to take things for granted after what we have been
through in the last two months. I wonder if we will ever be as we were.
This
next week will be taken up with more consultations with various specialists. She
is currently on the waiting list for a Port-A- Cath; this is a box (about the
size of a thumb nail) which is surgically installed under the skin in her chest
with a catheter through a large vein into her heart. It has a silicon cap which
can be punctured with a special needle to introduce intravenous drugs without
having to find a vein each time. It also means that when she has to give blood
for analysis that this can also be done via the Port-A-Cath. It is however not
all sweetness and light, there is an infection risk associated with this system
and we will have to be very alert for any and all bacteria. If it becomes
infected it has to be removed immediately under general anaesthetic because it
provides bacteria with the quickest route to the heart. She has to have this box
because one of the drugs she has (Vincristine) causes terrible wounds if
injected next to a vein and Philippa has very poor veins. Apart from this,
Philippa’s chromosomes are being checked out by the clinical genetics expert
for information that may shed more light on the situation. While she is having
the chemotherapy she will grow very little and is likely to lose her hair but it
is a small price to pay for a healthy child. If all goes well this week and she
manages to learn to swallow the medication that she is currently receiving
intravenously then she can go home.
For
those of you who are web-wise or know someone who is, we have a web site with
the details of Philippa’s diary. Rene is still busy making the site so some
things may change. I hope to try to update her diary regularly so that I can
keep you all informed. The address is: https://www.rdenhollander.nl
For
those of you who are techno phobic just log on to Hywel Sheryn at the usual
telephone number. I have to go now
but we’ll be in touch via the computer or via Mam and Dad.
All our
love to you and your families,