It’s been another full week! We met with the transplant team on Wednesday. It’s a lot….If he chooses to do it locally, he is scheduled for the first week of April for his transplant. We meet with the Mayo team next week as we may go there. Just checking with both for now. Doing our due diligences.
He will continue his treatments for now until mid March. First, he has to get all sorts of tests before to make sure his liver, heart, lungs etc are good before transplant. Things like labs, echo-cardiogram, EKG, pulmonary functions, chest x-rays etc. They said there are a TON of different tests that will need to be done. He will also have to meet with a social worker and nutritionist. They will also do another bone marrow biopsy before transplant as well.
Then right before transplant they will hook him up to a machine and collect his stem cells. They give him a medicine a couple days before that is actually going to push his bone marrow (stem cells) into his blood stream. The machine looks like a dialysis machine and it will collect his blood, they remove the stem cells and then they put his blood back in. They are hoping to get enough stem cells for 2 transplants. They won't know if they collected enough until it goes to the lab. But, they said it is usual for people to take 2-3 days collecting. It takes about 6 hours each time. They collect enough for 2 transplants so that when and if he relapses they have enough cells to do another transplant. Plus, the cells are the healthiest now since they haven't been exposed to all the chemo (that they will be giving him).
After that, he gets admitted into the hospital and they give him Melphalan Chemotherapy. They said that the dose of this is REALLY high. The transplant coordinator also mentioned that it isn't a normal dose that most cancer patients receive. She said they do such a high dose to kill everything in your body and it does it fast. One IV but it's A LOT (I think they each said that a couple of times) 24 hours after this medicine ends, they start his transplant. He will lose all his hair and it makes him very sick. Lots of nausea, diarrhea, infections, bleeding. Along with horrible mouth sores that makes it so he doesn't want to eat or drink but making sure he does both is crucial. The coordinator told him he is not going to feel well but she believes he is going to do well due to his physic and age.
He can have visitors at the hospital but no one under the age of 13 and of course no one who is sick.
At that point, they check his blood every single day, they start him on antibiotics because infection is a huge concern and his immune system is so crashed that they watch for everything.
They said those first 3 weeks are pretty rough. Pretty brutal. Mainly because everything destroyed his stem cells which temporarily cripples his immune system.
But, he has to come back every single day (except Sunday) after he is released from the hospital, for a few weeks. At that point they do blood draws and then he has chair time in case he still needs blood or platelets transfusions. If things start looking good, he can move to Monday/Wednesday and Friday and the same routine takes place. At that time they will continue to do blood transfusions, more antibiotics, platelet transfusions etc just depending on what his body needs.
Once his counts recover, then he goes into maintenance mode. Which will take a few months.
Once he is home, he is in quarantine until he can make his own white blood cells, which usually takes a couple of months. He said access to the kids is fine he just shouldn't go out to the public and have gatherings at our home for at least 60 days. Also, no other kids at our home. But, our kids are fine to go to other peoples home. I asked about my clients and he said as long as it's not where Todd is going to be, then it should be fine. I just have to sanitize really good after.
However; with that said, they also said he would need 24/7 supervision for a good 4 weeks after we comes home as well. I have to have a back up caregiver that can be available 24/7 in case I get sick, too, and need to stay away. Phew...it's a lot. Thankfully Todd’s parents are planning to come out and stay as long as we need. The transplant coordinator actually said that we are in a tougher situation because MOST who have this are older. Most of their patients with Myleloma and doing a transplant don't have jobs and they don't have kids still at home and so we are trying to juggle a lot in the middle of a really big, emotionally and physically stressful procedure.
He is not allowed to travel for quite a few months. Not even to a different state. No travel at all. In fact, he said if it was him, he would go on a trip right before transplant. Wouldn’t want to disobey that doctors order.
He will be out of work for a couple of months, they said to plan on at least two because of how miserable he will feel and won’t be driving for quite a few months. It could take him 6-12 months to feel semi "normal" again. He said most people take closer to a year but they are hoping due to who Todd is, age, physique, mental attitude that it won't take that long for him.
The transplant team also told us to be careful talking to other people or doing our own research online about his transplant because it's a slippery slope. It can get dark pretty quick...so to be careful. They gave us an awesome book that’s very detailed, which I have already finished.
In the meantime, they drew more numbers on Wednesday and Thursday night we got his results back. His IGG levels dropped by 200 so the doctor got him in immediately for an IVIG infusion yesterday.
This morning he was up bright and early to cheer on the kids as Kaiden and Arie ran a 5k while Jace, Todd and I were the cheering squad. He then stayed and helped clean up. He’s just super strong.
Poor guy feels horrible and his body is fighting hard, but you wouldn't know how miserable he is because he makes this look easy. At least that is what someone told us and I have to agree. If you didn't know him and the situation, you wouldn't even know he's sick. He is one strong guy. Miserable and strong. #shumanstrong
We truly appreciate everyone who has helped our family in any and every way.
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