When he was one day old, we discovered that Peter had Down Syndrome. After one day of crying, we decided to get on with life. Pete was a gorgeous wee baby who we loved, and who needed us.
I always thought that that initial grieving process helped us 3 years later when Pete was diagnosed with Leukaemia (Acute Lymphoblastic Leukaemia, A.L.L.) It was like we had been given some stress immunity. A bit of ignorance and a huge amount of confidence in the medical profession helped too.
Pete's initial prognosis was above 80%. We knew that we would have a tough few years ahead, but that Pete would ultimately be ok. There were other kids with Down Syndrome and Leukaemia as well, and we had never heard of any of them relapsing. So we thought that we were pretty much safe.
Pete's 3.3 years of chemo weren't particularly easy, but we got though them. And in August 2010, Peter finished treatment.
We took chocolates to the nurses and had a huge End of Treatment Party. It was a very happy time. Pete flourished as the chemo got out of his system, and he started eating and sleeping and doing so much better at school. Our lives were finally getting back to normal.
Pete's first blood test off-treatment was great, but each subsequent blood test showed Pete's platelet levels slowly dropping. When Pete was 5.5 months off treatment, a Bone Marrow Aspirate showed that Pete had relapsed in his bone marrow. There was also a small relapse in Pete's spinal fluid.
We were given 3 options. To do nothing and let Peter die. To give him chemo to try and prolong his life, or to go the heavy chemo route and try and beat the leukaemia. We decided to try and beat the leukaemia. We couldn't stand the thought of not having Pete in our lives.
The intense chemo was very hard and Pete was in-patient for 3 months, without a break. The worst side-effect from the chemo was extremely bad mucositis, where the lining of his mouth and digestive tract sloughed off. Pete was in constant horrible pain and started getting many blood infections. We found out later that the nurses all thought that he was going to die. Watching Pete go through all the pain was the hardest thing we have ever gone through. Luckily, Pete finally turned the corner and slowly recovered.
Ultimately, Pete needed to go to Bone marrow transplant. But we were told that he wouldn't survive a transplant unless his brother, Griffin, was a match. Finding out that Griffin wasn't a match, was a huge blow. As we knew that it greatly reduced Pete's chance for survival.
Pete did get back into remission in his bone marrow and spinal fluid. Unfortunately though, he has relapsed 4 more times in his spinal fluid. Each time we think we are safe, a routine Lumbar Puncture will show that the blasts (cancer cells) are back. And then Pete is back on weekly Lumbar Punctures until he is back in remission again. It's like living on a knife's edge, never knowing when he will relapse once again.
Radiation would probably help with Pete's Central Nervous System disease, but we have been told that that would lead to severe brain damage in Pete. After his relapse in January 2013, we were told that a cure was no longer possible for Peter in New Zealand, and that his life could only be prolongued. At the moment he is on 4-weekly Lumbar Punctures (along with oral and iv chemo). His last LP showed a small amount of blasts, and we know that Pete will never get into a true remission again if we just stick with straight chemo.
A trial in Philadelphia, called the CTL019 (Previously the Cart19) is having very promising results with children/patients with refractory leukemia -- leukemia that has become resistant to regular chemotherapy, like in Peter's case. Instead of using chemotherapy, it is using a person's own modified T-cells to fight the Leukaemia. Both adults and children are achieving long-term remissions.
We will do everything in our power to cure our son.
Peter is an awesome little boy, who brings a lot of laughter with all his mischief. He attends Waitakere Primary School and is very popular with the students and teachers. He is Christmas-mad, and the countdown to Christmas is pretty much on from Boxing day. His other loves are dogs and wolves (as long as they are quiet), books, DVD's and music. He could easily dance each day away.
Pete is really into dressing up and has a huge collection of costumes. Most Clinic days he will dress up, and he really loves it when people try to guess what he is. The costumes come with a classic Pete dance. And Pete is always keen to run up to all the nurses, and the receptionist, to show off his costume of the day. The costumes have been specially made so that Pete's port-o-cath can be accessed while they are on, and there is ready access to his back for his monthly Lumbar Puncture. A lot of the other patients, and the doctors and nurses, look forward to seeing Pete's new costumes. He sure gets a lot of smiles.
Peter has lived through over 6 years of chemo. No matter how rotten he feels, he still smiles and keeps us on our toes.. He makes us all laugh so much and gives a huge amount of meaning to our lives. We would give anything to be able to watch Peter grow up.
Acute Lymphoblastic Leukemia