Dagboek van Philippa/ Philippa's diary
Email: philippa@rdenhollander.nl                                   Last update: 14-06-04 21:29.







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It is now Saturday evening and I am looking back at the past 36 hours from my chair in the hospital. Yesterday (Friday) lunchtime Isabelle’s friend came round with her mother to pick up Isabelle. Philippa was lying on the sofa napping as she so often does and I tried to wake her up to talk to Nancy. I couldn’t get any reaction out of her and thinking she was simply drowsy left her for a little while. Then I tried to wake her again only to find that she was stiff from the waist up, her eyes were by now open but the pupils were fixed in the corners. I tried again and again to make contact but failed.

(Sorry to those of you who have regularly checked this part of the web site and have found nothing new, I hope you will understand when you read this update)

May 1st 2004
...to continue where I left off...

I tried again and again to talk to her but to no avail, she looked as though she was staring at the sofa and by now I was starting to panic. My head was spinning and with the thought of the Vincristine injection that she had had the day before in the back of my mind I tried to put two and two together. I remembered reading somewhere that convulsions could take place as a result of this drug and it looked suspiciously like an epileptic fit. I rang René to warn him and then rang the hospital where she was being treated to ask their opinion. The symptoms were becoming more obvious with every passing moment; her tongue was making strange movements as though she was trying to swallow but couldn’t, the main vein in her neck was pulsating at an alarming rate, her extremities were cold and floppy, she was turning blue and the colour had drained from her lips. I listed these symptoms to the hospital and after what seemed an eternity I spoke to a doctor who said it sounded critical and told me to dial 999. The ambulance arrived within a couple of minutes and even before then we could hear the sirens so that we knew it was on its way. Because the call was registered as a child reanimation (!) two ambulances were sent. The first arrived with two male paramedics, then another paramedic arrived on foot who had jumped out of his ambulance because of it being delayed by the chaotic road system in our newly built housing estate. The second ambulance arrived a few minutes later. They began by checking her reactions and finding none measured her oxygen saturation and carbon dioxide output, the first was very low and the second was very high. They put an oxygen mask on her, stabilized her and took her into the ambulance, put in two intravenous lines and we were ready to go to Amsterdam. Meanwhile René had come home and we made plans to meet in the AMC. At this point Joshua was still asleep upstairs in bed, Francesca, Isabella and Benjamin were downstairs because it was a school vacation and all I could do was to leave the organization to René. I had been warned by the chief paramedic that they would be driving “blue”, in other words with blue flashing lights and sirens if necessary and that if traffic got bad that the first ambulance would go on ahead and we would follow on later. The paramedic from the second ambulance went in the first ambulance so that Philippa would have two paramedics taking care of her and one to drive the vehicle and I would be in the front of the second ambulance with the driver. It was an agonizing 20 minutes (normal journey time 40 minutes) to Amsterdam, the speed, the traffic – it was Good Friday and the road was full of caravans- not daring to ask why Philippa’s ambulance had put it’s sirens on – was it simply traffic or was it because her condition had worsened?  I heard later that they had given her Valium 10 minutes before we arrived because she had started to convulse which she had not done up to this point.
Once we had arrived she was tranferred to Emergency and I had to watch while 9 doctors, paramedics and nurses worked on her. The chief paramedic intubated her to take over her breathing for her and his skill in this was proved later when she suffered no ill effects of the tube to her lungs when it had been removed. Once stabilized and  immobilized (because of the convulsions) she was given a CT scan to check whether she was suffering from a brain haemorage or to check whether she had a lymphoma in the brain. The doctors asked me several times if Philippa had had Aspiraginase which is the next drug in her treatment because this is more renowned for convulsions. They obviously found it difficult to believe that it could be attributed to Vincristine. Philippa was transferred to Intensive care at about 3pm and once she had demonstrated that she could breathe unaided and her vital signs were stable she was transferred to the normal ward at 9pm. She could not remember anything and was very surprised to find herself waking up in the AMC. The CT scan had shown that there was nothing that could have caused the convulsion and so the search was on to find the cause. To cut a long story short the conclusion was that it was indeed the Vincristine that had caused the attack. She was discharged on Easter Sunday and we were glad to go home and pick up the girls and Joshua from the various places where they were staying.

Well a lot has happened since that incredibly stressful couple of days. We have found out from the oncologist that although convulsions have been documented as possible side effects of Vincristine that it happens so infrequently that it is often discounted as a possible reaction. Trust Philippa to have a very rare reaction on top of having a very rare condition. The oncologist contacted the various work groups in Britain, France, Holland and America to find information on this rare reaction and was able to come to a decision as to what to do in the future. The drug Vincristine is given weekly in the first phase and appears regularly in the maintenance period of 100 weeks. It was obvious that she would not be able to receive this drug again and so an alternative would have to be found. She was being treated following the non-high risk protocol and has since had her treatment changed to a medium-risk protocol. In essence what this means is this: the first induction treatment has been extended by one extra treatment , the middle Central Nervous System treatment remains unchanged, then instead of being followed by the maintenance treatment is replaced for the first 8 weeks by another induction treatment (re-induction treatment). The purpose of this is to achieve maximum coverage without using Vincristine and to attack every phase of cell division. The down side of  this change is that she stands a greater chance of dropping too low in her white blood cell count and this has all sorts of nasty implications for her health. But we’ll carry on fighting as we have done so far. She has regained her appetite in the last couple of weeks and has by now the stereotypical appearance of a cancer patient. She has put on 3 kilos in 3 weeks and lost her hair in the space of a week, she doesn’t really mind and has even started to make jokes about it. Mam has made some crocheted hats for her and she has a significant collection by now.

I will do my best to update this site more often but sometimes circumstances get the better of you. The Dutch version gets an almost daily update but that is of no consolation to those of you who don’t read Dutch! Mam and Dad are still available for information so please feel free to contact them if I am not keeping you up to date. You can at least see the photo’s of Philippa even if there isn’t any new text.Until the next time .....