December 2008

3rd December RMH Christian started his delayed intensification. On this day he had MRD( example from bone marrow to see how he is doing),LP ( chemo into his spinal fluid), Doxorubicin ( one of the chemo drugs going into his blood stream, takes one hour) and Peg Asparaginase ( chemo drug goes in to his muscle).
Christian is fine, he loves playing in the play room, not crying anymore when put to sleep, sits on my lap and watches Tom&Jerry while they put drugs in to his line and fells asleep. Wen he wakes up he is also not too bad usually he screams and kicks and wants to run just uncontrollable and it takes us an hour to calm him down.
After more chemo he is chasing nurses down the corridor and being very chatty and happy, only gets tired on the way home when chemo starts to take affect on him.

4Th December East Surrey hospital for vincristine ( another chemo) this one has nasty side affects on him like constipation, joint, muscle aches.
He is also starting on the high dose of steroids and they usually make him very moody, aggressive, hungry (this one I don't mind, he usually doesn't eat anything).

10Th RMH for more chemo, Christian is still feeling fine and we secretly hope this time the drugs will not have such a bad side affects.

17Th RMH vincristine & Doxorubicin again daddy had to take him because I and Sebastian are not well and don't want to pass it to other children in hospital. It is his first time without me, but he was fine played in a playroom with daddy and read books while was having a chemo :).
Christian will have a brake now until 6Th of January and if his blood counts will be fine ( which they never are) will start his next chemo drugs in this block on the 6Th.

We also were asked if we want to enter the trial and after lot of thinking said yes, but because it is randomised, computer did not choose him so he will have two intensification blocks instead of one. Basically the aim of the trial is to see whether children who are in a low risk group and are in remission( like Christian), can be successfully treated with less chemo, however he was not chosen so he will go through the standard treatment now.

21Th December side affects are kicking in Christian is not well, his body is so stiff he seems so uncomfortable, also very tired and very angry and irritated. He also is very constipated and his stomach is hard and blown up. He cries allot and asks me to change his nappy all the time, because he thinks he has done a poo, but he hasn't. So Ill just pretend to be changing it.

He also doesn't want his brother or daddy only mummy, so to have a shower is a challenge, because he just screams for me. He is also staring to rub his face, basically he is doing all the things he used to at the beginning of his treatment and having the same side affects.

Steroids make him very hungry, but chemo drugs change the taste buds so anything he tries he doesn't like and I keep making different foods that he asks me, but he tries them and spits them out. The only thing I found he likes at the moment is baked beans so baked beans for breakfast , lunch and dinner and lots of milk during the night. He must wake up for milk at least 4-5 times at night, worse than newborn :).
Anyway I don't mind I am used to this he has been consistently waking up for milk every night since started his treatment. ( I am known in hospital as sleepwalking mother with bottle of milk in my hand). After all at the moment milk is his main food and if he didn't drink that he would be tub fed.
We have seen dietitians couple of times but nothing worked, I was told not to give milk and he end up going off the milk us well and not eating either. He was also prescribed milk shakes but doesn't like them.
His hair also are felling out , but that is the least of our worries.
Because of this intensive block he is also very prone to infections ( his neutraphils are 0.1 anything under 1 and they become neutraphinic-easy to catch anything).
Even the food have to be carefully prepared, not reheated twice, no live bio yogurts, no see food, anything that can carry a bacteria. I also keep the house very clean, moping , hoovering, dusting is every day routine, the same as is constant hand washing, bedding changing every other day.
Sebastian is very good washes his hands all the time, by the end of it we all will be obsessed with germs :)
It will be a very quiet Christmas for us, but I am sure the boys will enjoy, because they do have a lots of presents, so they will be spoilt this Xmas!