Like in some other of my “medical type” posts, I first want to say that I am not a doctor and not an expert in cancer or bone marrow transplant! I had no clue what a bone marrow transplant was or why someone would need one before Oliver was diagnosed. This is a summary of what a bone marrow transplant is and why Oliver had one!
When Oliver was diagnosed with JMML they told us without a bone marrow transplant he would not survive. We had to sit through several conferences where they went over what a bone marrow transplant was along with the very serious long-term and life-threatening risks involved. We had to sign mountains of consent forms before they started treatment.
Oliver was given a variety of extremely high dose chemo during the days leading up to transplant day which killed the cancerous cells in his bone marrow. The immediate effects of the chemo and having no immune cells included vomiting, diarrhea, open sores in his mouth and digestive tract, the worst bleeding diaper rash you could possibly imagine, and complete loss of appetite. It also was very hard on his kidneys, liver, blood vessels, and other organs in his body. Once the new stem cells started producing their own cells, his body started to heal.
There are three sources that the cells for bone marrow transplant can come from: bone marrow, peripheral blood, or umbilical cord blood (collected from a baby’s umbilical cord after it is born). Doctors determine what type a person needs depending on a variety of factors. Oliver was given a peripheral blood transplant meaning his donor donated cells in a similar way to giving blood (only with more steps involved). His donor did not need to have surgery to take bone marrow out. The cells were given to Oliver in his central line (an IV placed in his chest during treatment) on transplant day.
Be the Match is an organization that helps with matching people for bone marrow transplants. Their website has a lot of information about all aspects of transplant. Everyone under age 44 should join Be the Match! It is free to join! They send you an envelope with a q-tip in it to swab your cheek and you just mail it back! Donating to someone would mean literally saving their life.
They were able to find a 10/10 match for Oliver! Not everyone is able to find a bone marrow match – it ranges from 19% to 80% depending on ethnicity according to bethematch.org. Oliver’s bone marrow donor came from somewhere in Europe (we heard either Germany or England but we aren’t totally sure). The person donated and they put the bag of transplant cells right on a plane and flew it straight to Oliver in Seattle! We hopefully will be able to find out who Oliver’s donor was two years after his transplant. Oliver was in the hospital for 42 days during transplant. (He also had a 4 week hospital stay for chemo prior to transplant). We had to stay locally in Seattle for 100 days after transplant. We are so incredibly thankful for the complete stranger that donated their cells for Oliver’s transplant!
Transplant is a long slow recovery. Oliver had a feeding tube in for 5 months after transplant because he completely lost his appetite. He threw up every single day for over 40 days straight. He can’t be in public places, dig in dirt or sand, swim, be around animals, or a lot of other things for a year after transplant while his immune system recovers.
Another complication of transplant is something called Graft vs Host disease. This is where the new transplant cells attack the person’s body because they recognize it as something foreign. This can show up as a variety of things but commonly includes skin problems, liver problems, and gut/digestive problems. These complications are usually treatable but can be very serious and need to be treated early. Oliver has not had too much graft vs host disease but it can happen up to two years after transplant most commonly.
The transplant will make Oliver more susceptible to other cancers for the rest of his life. He will require long-term follow up on other body systems for the rest of his life as well. Hopefully because Oliver was so young when he went through transplant he will forget the hard parts and someday will understand that despite his long term side effects, we made the only decision we could for him in choosing this transplant.