Dagboek van Philippa/ Philippa's diary
Email: philippa@rdenhollander.nl                                   Last update: 14-06-04 21:28.







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Open letter


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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,