Sep 13, 2007 Latest post:
May 17, 2014
Peter has Relapsed Leukaemia (ALL).
Understanding Blood counts Haemoglobin (normal range 109-144) Transfuse under 80 Total White Cells (normal range 4.6-13.4) Neutrophils (normal range 1.4-9.2) Neutropaenic is under 0.5 i.e. no functioning immune system Platelets (normal range 150-400) Transfuse under 10
It all started Easter 2007. Peter woke up screaming in the night. We managed to get him back to sleep, but from then on, things weren't quite right. He stopped walking, and seemed to be in a lot of pain. Several times we took him to different GP's and also to the A and E departments at Starship and Waitakere hospitals. Because he never had a fever, the doctors would check him over and not find anything. I was usually told that he was constipated (which he was), or had diarrhea. Eventually I found worms in his nappy and we realised that the worms must have been causing the pain. So got those sorted out. Then we found that Pete had a urinary tract infection. Even with these things sorted out, Pete was still in a lot of pain, but you could tell that the doctors thought I was just being a hypochondriac. Colin took him to the Starship A and E one night when Pete was really screaming. They diagnosed him with constipation, and gave him an enema, which did seem to help. But things were still not right. By this stage I had just given up on doctors. It wasn't till near the end of the school holidays, when I realised that Kindergarten was starting in a couple of days, and Pete could still not walk, that I must try one more doctor. We finally got in to see our favourite GP, Dr Lang, who we had never managed to see before. She could see that Pete was having pain with his legs, which I had mentioned. But she said it might be growing pains. I just thought that she meant it must be all in his head. But she said that we would order blood tests as well. The first time that any one had mentioned taking a blood test. We went home, and a couple of hours later, had a phone call from a nurse, saying that we needed to return to see Dr Lang, and to have a hospital bag packed for Pete (his blood test showed low Platelets and blast cells present). My first thought was of Leukaemia, as I knew that kids with Down Syndrome have a higher chance of getting it. And it had always been one of my greatest fears. Dr Lang said that it could be a number of things, and one of those could be Leukaemia. She said that they were waiting for us at the Starship A and E. We headed over there and Pete was given another blood test to confirm that he had blast cells. We had the torturous time of Pete being given a canula in his wrist. Then we had to wait till the next morning to fit Pete in for a bone Marrow aspirate to find out what kind of Leukaemia Pete had.
Peter was diagnosed with Acute Lymphoblastic Leukaemia (ALL) on the 18th of April 2007. He has standard risk pre-B ALL and was an early responder. He started chemotherapy on the 23rd and was in remission after the first week.
The first phase of Chemo is called Induction. 4 weeks of high dose steroids. Absolute torture. Pete barely slept for the month, and spent most of his days crying. Colin and I were so sleep deprived that the whole thing was one big nightmare.
The second phase was Intensified Consolidation. We were in a clinical study, which meant it was 8 weeks instead of 4, with a lot more chemo and Lumbar punctures. Pete spent a lot of time in hospital with fevers and his first portocath was infected and had to be removed (all the skin above it was bright red). The worst part of IC (and the whole of treatment), was when Pete had a huge febrile seizure that went on forever. I was sure that he was dying, and I will never forget all the doctors working on him while I stood at the foot of his cot crying. Anyway, it all turned out ok.
Peter is due to finish treatment on 20 August 2010!!!!!!
We had a huge End of Treatment party to celebrate. Hiring a heated school pool, and organising a clown, and inviting everyone. We were ecstatic to have the whole chemo journey behind us. Pete's first blood test OT, which was after 2 weeks, was awesome. Everything leapt up to pretty much normal values. But every subsequent blood test was worrying to us, as some of his counts slowly dropped. It was particuarly noticable in his platelets. His lymphocytes were also very slow to recover. We changed from monthly to fortnightly
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