Dagboek van Philippa/ Philippa's diary
Email: philippa@rdenhollander.nl                                   Last update: 13-08-04 23:39.







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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.

The remaining 3 ARA-C treatments had been suspended temporarily and were due to begin again on August 13,14 and 15. In order to check Philippa’s cell situation she had blood taken yesterday and we heard that she is once again in neutropenia. Another blow just as we were hoping that we could have a few days grace before she dropped low again as a result of this 3 day treatment. She is lower in her cells than she was before her last infection, I am just hoping to goodness that she passes this phase unscathed. I do feel sorry for the other children though because nobody is allowed to come to play here because of germs and illnesses foreign to Philippa (she is resistant to the ones which are normal in our house) and nobody is allowed to go to play elsewhere just in case they bring something nasty back with them. I have to keep telling myself that it is just a matter of time and things will return to normal but it is so long since we have had that that I am not sure how it feels! We are doing our best to remain positive, in the mean time please remember Philippa in your prayers and I hope to give you some good news soon. Congratulations on getting to the end of this epic!