This is the first installment of the story of Jerry's Bone Marrow Transplant, which details my father-in-law's life saving bone marrow transplant at Johns Hopkins Cancer Center in Baltimore.
My husband is about to become a bone marrow donor for his father. I will be completely honest and tell you that this makes me slightly nervous. I am proud of my husband and thrilled for this opportunity for my father-in-law but I can’t help but feel selfishly fearful and afraid. Before I indulge myself with that though, let me tell you about the last year that has lead us to this point.
Chris’s Dad, Jerry, has had CLL Leukemia for 35 years. For 25 of those years he did not need any kind of treatment. 10 years ago he began to need minor chemotherapy treatments (Fludarabine) to keep his white blood cell count down. He had three of these treatments over the 10 years, about 3 years apart. Each treatment was inconvenient and brought with it nervous feelings for Jerry and the family but each time he recovered quickly and fully and returned to his normal life within a week.
Last year, January 2010, immediately after Chris’s parents celebrated their 50th Wedding Anniversary and right before their big trip to Vietnam, Jerry complained of pain in his shoulder which was eventually diagnosed as Lymphoma. The appearance of Lymphoma in a patient with CCL Leukemia is called Richter’s Syndrome and if you look online, there is a poor prognosis, five to seven months. Jerry's lymph nodes were swelling and growing all over his body and he was in excruciating pain. Through radiation and chemotherapy (CHOP), he was able to beat back the Lymphoma with relatively few side effects and by May of 2010 he was feeling good again.
It didn’t last though and soon the lymph nodes were swelling again. A trial drug treatment began (Revlimid) which did nothing. Jerry was in so much pain that he couldn’t sleep, or lay down. He began an intense regime of pain-killers, which brought their own side effects and difficulties. They went back to the CHOP chemotherapy that had worked in the spring and were again able to beat back the cancer, but as soon as he stopped the chemotherapy, the lymph nodes would grow again.
In September 2010 he started the most intense chemotherapy treatment to date, HyperCVAD, a treatment generally given to younger patients. It was an aggressive treatment and his doctors weren’t sure how he would do. Everyone was nervous, but after an incredibly difficult five months of going in and out of the hospital for treatments (eight cycles, three weeks apart), losing his hair and his appetite, and other debilitating side effects, Jerry is in remission. Remission!
As joyous as this news is, the doctors have said, but for how long? Remission is wonderful, but in this case it isn't likely to last very long. A bone marrow transplant became a possibility a few months ago, right before Christmas.
The search began for a donor but they were unable to find a full match in the donor bank. It turns out that Jerry has a very unique DNA profile that would make it next to impossible to find a match. His sister was tested and matched 50%, as did both of his children, Chris and his sister Gloria. The half-matched (Haplo-identical) bone marrow transplant is not as ideal as the full match, however it is a proven procedure that has had success at Johns Hopkins Cancer Center and there may be fewer side effects.
Out of the three potential half-match donors, Chris is the best choice being the youngest, the same gender as Jerry and having a higher number of antigens. Other therapies have been considered but nothing has stood out as a better option for a cure.
The statistics that we have been told are that there is a 50% chance that Jerry will be cured, there is a 30% chance that it will not work but he will survive and there is a 20% chance that he will die. However, not doing a bone marrow transplant means that he is essentially just waiting for the cancer to return. The doctors can’t say when, but everyone seems to believe that it would likely be sooner rather than later. If the cancer returns, with the pain, the swelling and the chemotherapy treatments, Jerry is not thrilled about reliving the last year. Understandably, he wants to go for the cure.
So we are prepping for a haplo-identical bone marrow transplant in Baltimore at Johns Hopkins in a few weeks. Chris did the initial DNA swab over a month ago, he did a blood work up two weeks ago and this Monday he will go down for two days for more extensive testing, including an EKG and a pint of blood drawn, to give back to him after the donation. Jerry is also going to have a work up done, to make sure that he is strong enough for this treatment. We are hopeful that everything checks out for both of them.
In April, we will all go down to Baltimore for three days for the outpatient procedure. A family member will watch the kids at the hotel while I go to the hospital with Chris. Maddy and Gloria will be with Jerry. The risks for Chris are minor, and the same as for any surgical procedure that involves anesthesia and the possibility of infection. His recovery will be a week away from work, with soreness and pain in his hips (they take the bone marrow from his pelvic bones) lasting up to three weeks.
Jerry’s procedure comes with greater risks and a more difficult recovery. Doctors administer just enough chemotherapy to suppress the immune system, then he gets the bone marrow from Chris injected into his blood stream.
"Three days after the transplant, a patient is given a high dose of a drug called cyclophosphamide, which “re-boots” the immune system. The cyclophosphamide spares the donor's stem cells and allows them to establish new blood cells and a new immune system. The budding immune system is re-trained to see the patient's body as friend, preventing the patient from rejecting the transplanted bone marrow. Doctors speculate the procedure works because with a higher level of mismatch between the donor and recipient, the immune system reacts more strongly against the cancer and lowers the chance of relapse, explains Dr. Ephraim Fuchs, associate professor of oncology, who helped develop the procedure." (from the Johns Hopkins site.)
After he is released from the hospital, he must remain in Baltimore for a couple of months while they monitor him as an outpatient. During this time he will be very sick, weak, nauseous, vomiting, etc., and there is a risk for Graft-versus-host disease (GVHD). It will be a difficult time for Chris’s parents but perhaps no worse than parts of the last year and certainly tolerable if at the end of the road Jerry is cured.
If it doesn’t work, the emotional and psychological effects for Chris could be intense. Despite the fact that things are happening on a molecular level, which no one has any control over, Chris can’t help but hear in a case of graft versus host disease, “my t-cells are attacking my Dad’s body.” He’s afraid of blaming himself or that his family will blame him. Obviously, it could never be Chris’s fault if things don’t go well, but in the same way that I blamed myself for having a miscarriage, those guilty feelings might be there in his head and must be worked through.
Personally, I am afraid of losing my husband. The chances of that are very small, something like a 2% chance, and so it is highly unlikely that it will happen, but the fear is still there. I hope that by facing it and saying it, that I can let it go and move past it. I am also afraid of the emotional toll on Chris if the procedure doesn’t work and what that might do to our relationship. He has a close bond with his Dad and this last year has been a hard road that could get much harder. I know that we are strong though, and love each other, and I'm sure we will be able to overcome any challenges we may face. I hope that the recovery for Chris is easier than we are expecting, but it will be tough around here for me with two little kids and a husband in bed who is not able to help. I am a good nurse though, as long as Chris is a good patient!
Now, despite all my selfish fears and Chris’s potential irrational self-blame, there is no reality in which we couldn’t do this. If Jerry wants to fight for a cure then we must be right there with him. There is no greater gift than a chance at life and we love Jerry too much to even contemplate not doing this. If it doesn’t work, we know that he was facing death anyway. If it does work, you can bet we will be singing and dancing and sending Maddy and Jerry off on thier long-delayed trip to Vietnam. (...please let it work...)
Anything that we are dealing with is totally managable compared to what Maddy and Jerry are dealing with. I can only guess how they are feeling but I do know that they are exhausted from the last year and they desperately wish that this would all go away. They are fighting the hard fight and hoping to be one of the lucky ones, and now, so are we.
Once we get through all the "what-ifs" and worst case scenarios, I know that we will get to a place, mentally and emotionally, where we are strong and sure that this will go well and we will have a positive outcome. There is no other place to be. We must focus on one day at a time and try to keep our humor and our happiness amidst the stress and uncertainty.
If you can, keep us in your thoughts and think positively for us. Every little bit helps and we would so appreciate it. I will post an update after we are home from Baltimore towards the end of April. If anyone has any questions, feel free to post a comment or send me an email, and I will do my best to answer it or forward it onto Maddy and Jerry.
Read the next installment - Part Two: Testing Complete