August
12 2004
As I had expected it has taken me a very long time to get around to writing an
update but better late than never. René and I had sincerely hoped that we would
have left the intensive period behind us by now and that Philippa would have
resumed a somewhat more normal life in the maintenance phase of the treatment,
unfortunately this has not yet happened due to a few set backs. But first to
recap on the last couple of months....
Philippa began her second course of Dexamethason on June 14th and
although the dosage was higher we didn’t notice any significant differences in
either her appetite or mood swings from when she was taking it the first time
round. The only downside was the number of tablets; she had had tablets of 1.5mg
the first time and this time they were all 0.5mg which meant 5 tablets per dose
and 3 doses per day, that is 352 tablets over a 5 week period ( we calculated
that if it took her 1 minute per tablet then she would be swallowing for nearly
6 hours) and that for a 5 year old! In
the same week she had a heart ultrasound which showed that all was fine and we
had an appointment with the oncologist. She explained that although Philippa’s
blood values were dropping that she was doing well under the circumstances. We
asked her what we could expect from the following chemo treatment , a drug
called Asparaginase, because when Philippa had her convulsion from the
Vincristine the first question they asked was “has she had asparaginase?”.
We were understandably concerned. The oncologist smiled a wry smile and said
“I don’t dare promise you two anything after what has happened”. Even in
these most serious of circumstances there is still a kind of warped humour and a
lot of laughs. On Monday 21st June she went in overnight for a
combination of asparaginase and adriamycine and all went well; René stayed with
her and I stayed at home with the other children. Later on the same week she
went back in for a second shorter treatment and the same was repeated the
following week. In the week beginning July 5th Philippa had one
combination treatment and this was also repeated the following week. This second
week was the week that Mam and Dad came to visit us and saw Philippa as she now
looks for the first time. It was, needless to say, a very confrontational and
emotional experience for them. As always they came laden with presents both from themselves
and from kind and generous friends and family. It is so hard to keep up with the
thank you’s but we’re doing our best.
By
now the girls were on their school Summer holiday and enjoying the fact that
they didn’t have to rush in the mornings, unfortunately for parents wanting a
lie-in this didn’t mean that they stayed in bed. They were actually getting up
even earlier to watch all of the cartoons they would normally miss! The weather
was particulary useless in the first 2 weeks and I spent a lot of time trying to
keep everybody amused while the weather gods had their laugh turning the tap on
and off umpteen times a day. By now Philippa’s blood values were starting to
drop and I was having to take her to the hospital a day before each planned
treatment to check that she was in a fit state to have it. The next tough
treatment was cyclofosfamide planned for July
23rd, this is only a 1 hour intravenous medicine but because
of hyper hydration and possible side effects, the patients are kept in
overnight. Just as before Philippa came through it as cheerful as ever, charming
the doctors and nurses in her own inimitable way. She came home on Saturday and
was due back in on Monday for the next treatment. As a parent you are used to
trying to give a child bad news knowing full well that all hell is about to
break loose, you expect tears and tantrums at the very least. But when we tell
Philippa that she has one day at home before going back again, all she says is
“OK”. I have so much respect for her, her ability to accept every day for
what it is and not worry about what is around the corner is admirable beyond
words.
The
last two weeks of the intensive period were about to start. Each week comprised
of four daily trips to the AMC hospital, the first of which was a longer stay
because it involved a spinal injection with chemo ( called a triple ) followed
by a two hour long period of lying flat. This is for two reasons; the change in
spinal pressure could result in nausea and headaches but also because
the chemo drug needs to be able to get to the brain. The other 3 trips
were only for single shots of the same drug ARA-C which René was able to do by
leaving work at 3pm. Philippa was seemingly doing so well that we began to relax
at the thought of only having to repeat this week one more time. The second week
began on August 2nd with another triple and ARA-C. Each time they use
the Port A Cath to inject medicine they take blood for analysis and this time we
received the awful news that she was in aplasia (neutropenia) meaning that she
by now had so few white blood cells responsible for resistance to bacteria and
viruses that we would have to make some big changes at home. While in netropenia
patients are not even allowed to have tap water without boiling it first, no
uncooked food (so no salad or raw vegetables) sauces, cut meat, nuts or sweets
unless in sealed bags and so the list goes on. René had rung me with the news
from the hospital so straightaway I went about disinfecting the toilet and
designating it a Philippa – only zone. I also spent time with Francesca and
Isabella explaining to them why it was so important that they wash their hands
again and again. On the way home Philippa was sick and on arriving home didn’t
look like the little girl I knew. She was weak and tired with look about her
that said “how much longer do I have to do this” , but being Philippa she
never complained. She fell asleep on the sofa and went early to bed. At 11pm René
went upstairs to give her the last dose of medicine for the day. This would be
the beginning of the 4th week that she was taking 10 syringes of oral
medication per day responsible for selective intestinal decontamination and anti
fungal anti biotics. When he felt her she was hot and feverish and having taken
her temperature discovered that she was 38.7C. When children are in neutropenia
they have no ablility to fight even the most common of colds because they have
too few ‘soldiers’ in their blood and a high temperature is an indicator of
infection. When it goes above 38.5 we have to contact the hospital and so we
did. To cut a long story short René had to get in the car at 3am and take
Philippa to the hospital where she would be put on intravenous anti-biotics. At
5.30 am I was collecting clothes for myself and all of the other children, René’s
father was picking us all up at 8am – he dropped me and Benjamin off at the
hospital and took Francesca, Isabella and Joshua back to their house to stay.
Because Philippa was in isolation (due to the neutropenia and infection) I was
allowed to sleep in her room with Benjamin and René was able to go back to
Lelystad and work the rest of the week. If
this had not been possible then René would have had to drive to Amsterdam every
night and take over from me while I slept in the Ronald McDonald
house, only to leave the next morning again for work. This is only
acceptable because I am still breast feeding Benjamin. Philippa’s temperature
fluctuated dramatically during the week going up and down with no apparent
reason. Cultures were done of her blood but nothing was found. After 5 days of
antibiotics with no improvement she got better of her own accord and came out of
neutropenia at the same time (coincidence or not?). Anyway
René took over from me on Friday night and I went home with Benjamin.
Philippa and René came home on Monday and they picked up the other children on
their way home.