Here’s what it will be like for Clark to get his bone marrow transplant.
- Over the next two months, UCSF and bethematch.org are working together to identify the best possible bone marrow donor they can find for Clark. The ideal match will need to be young, of similar genetic background (Irish and German primarily), not have any life threatening diseases, and has never been exposed to the CMV virus.
- After identifying a match, they then begin the process of double checking to see if the person is still willing to donate, going through a ton of paperwork and more detailed tests, and if this individual still doesn’t bolt by this stage, the donor will finally be ready to set a date to extract.
- Clark will need to be brought into the hospital ahead of the extraction date, and started a conditioning treatment (Chemotherapy). This treatment will effectively kill all the white blood cells as well as the bone marrow in his body. It will return Clark to a state of zero immunity, similar to how he was in the uterus 4 months before he was born.
- He will then be given the bone marrow cells in the form of a drip. This part of the procedure is very quick (and very cool). The cells just need to be dropped into the blood stream. They know where to go and what to do.
- Once given the drip, Clark will begin to re-grow his bone marrow. But during this time, he will be susceptible to bacteria, virus and fungus. So Clark and Beth will need to be kept in a special isolated room for the first 6 weeks of treatment. This room will have special ventilation that will be purifying all the air coming into the room. Even with filtered ventilation, bacteria found naturally on and in the human body will also be a risk for Clark. Antibiotics, anti-fungal medicine, as well as antihistamines will be given regularly during this time.
- Connor will not be allowed to visit at all due to the risk of virus and bacteria. I will be allowed to visit, assuming I don’t have a hint of cold or sickness, and I will have to be scrubbed down before entering.
- After the 6 weeks in intensive care, we will hopefully see white blood cells rising. If this is the case, we are on a track to success (but far from cured). We will then be sent home to continue recovery.
- Clark will need to continue to be kept in isolation after returning home. If we want Clark and Connor to spend time together, then Connor will need to be isolated from other children as well. No pre-school or playing at the park with other children.
- Hopefully between 4-9 months after being sent home, all 3 of Clark’s blood cell counts will rise, and he will effectively be cured. If so, he will have brand new bone marrow and will not need to take any ongoing drugs.
This is the plan, as long as there aren’t complications… Complications on this path are far and wide.
- Finding a good match is the first major hurdle. Doctors have assured us that this should be fairly successful, as the vast majority of the donor pool is of European decent.
- We have to be worried about his body rejecting the cells that are donated to him. This rejection can happen in one of two ways:
A) His body could attack the cells as they are coming in, never letting them root.
B) Or worse, something called Graft-versus-host disease (GvHD). This is where the new donated bone marrow takes root, and then starts to attack the recipient’s host cells. This can take up to 2 years to show itself! - Through the whole procedure, we have to be constantly vigilant to ensure Clark doesn’t get a whole host of problems while his immune system is compromised. Pulmonary infection is the leading cause of mortality with children receiving bone marrow transplants.
We are cautiously optimistic about this procedure and wary of its risks, but we are very glad there is at least hope in curing Clark.