(above picture – the cells are protected in the silver case and kept frozen in Liquid Nitrogen)
“We have found a match!” words every parent of a child waiting for a transplant longs to hear. Leading up to this moment, we had some very low points. We were already dealt the blow of having no bone marrow donor match on the international donor registry which seemed almost unbelievable. We knew Chace was unique but we didn’t expect that out of 19 million, there would be no matches! Chace has ancestral ties to Ngati Awa, Ngati Porou and Tuhoe iwi and in New Zealand, the chances of finding a match if you are of Maori or Pacific island descent (or other ethnic minority group), your chances of finding a match are decreased due to lower bone marrow donation rates.
But receiving the news that Chace could have a “matched unrelated cord blood transplant” was a wonderful relief. It came from Australia, the background story is that a mother had agreed to donate the cord blood of her new-born baby to a cord blood bank. Umbilical cords are rich in blood stem cells and are capable of repopulating the bone marrow and producing blood. It had been stored for years waiting for a match to eventually pop up.
The big day couldn’t come fast enough; we knew the process was very intense and hard on the body and that there were a number of potential risks in the transplant preparation phase known as “conditioning”. This process involves the most intensive chemotherapy, right on the limits of what the human body can tolerate. It needs to be this intense so that it completely wipes out all of the bone marrow including all of the cancerous cells. It basically leaves the marrow “empty” so that the new healthy cells can be injected and start the process of re population.
The 10 days of conditioning was very tough. Chace was very sick, with high temperatures which lead him to having a serious seizure. But being Chace, he took this in his stride and before we knew it, transplant day had arrived.
It was a very emotional day for us. It was a huge relief to know that we were giving Chace what he needed so desperately. Before the infusion started (most people envision a surgical procedure given the name “transplant” but it’s actually similar to a blood transfusion given intravenously) I was able to put on these special gloves and hold the canister that contained the precious stem cells. It was a very precious moment of overwhelming hope and promise, a memory I will treasure forever. Chace’s Koko did a karakia (prayer) and we were ready to hook Chace up.
Chace was worried as he could see all of us teary but he had some of his favorite nurses on (Nicola, Jodie and Norrie) which helped. He hugged his Nan really tight while they hooked him up and in half an hour or so, it was all over! The new healthy cells were in his little body and now we could concentrate on Chace’s recovery.
From day one of this journey, I kept a journal. I wanted to be able to show Chace when he was older how brave and courageous he was when he was only a baby. I wanted to be able to show Chace’s grandchildren how amazing their dad was. I will never have that opportunity but what I can do it share little moments into our journey to show how brave these children are. Please feel free to read Chace’s and Mummy’s journal entry.
Written by Keri