Father and Son Prepare for a Bone Marrow Transplant
Thursday, March 24, 2011 at 1:47PM 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
Bone Marrow Transplant, Health in Family
Reader Comments (22)
We're rooting for you guys - and hoping, praying, sending positive thoughts your way!
Thanks so much Melissa, it means a lot. xo
We are rooting for you guys and sending good vibes.
Lot's of love xx
Chris you and your family are in our thoughts and prayers.. You are an amazing person Chris, your father is lucking to have such a wonderful son. Leslie please keep us updated and if you need anything I'm a phone call away!! Lots of love Cheryl, Rich, Zach and Zoe
Our thoughts are with you! Lots of love - xxRachel & Rosecrans
You know where my heart has been since I have known about this. You are both amazing people and I love you! xo
"Please let it work" is echoed in the thoughts and hearts of everyone who loves you and your family. I hope you can find some comfort in the love and support that surrounds you. xo
Thanks a lot everyone. Love C
Thank you everyone! Just knowing that you all understand what we are facing and are there for us really makes me feel good. xo
Wow what a great gift to give. I am sure everything will work out the way you plan. Good luck and remember if you need anything to contact me. Tracey
Thanks Tracey. xoxo
I can imagine the stress that comes with watching someone battle cancer for so long. I watched my mom go in and out of remission and disease from breast cancer for 15 years before finally beating it. The battle of cancer affects not only the person, but the family, and it's so difficult. IIt sounds like your father in law is a strong man, and has beaten many of the odds. I hope he continues to beat them and that the surgery is a success for both him as well as your husband. My thoughts and prayers are with you and your family.
You guys are a resilient bunch - Stay strong! Sending lots of positive energy your way! Will be thinking of all of you, and looking forward to hearing good news. ~Jen
Oh Mandi, thanks for your understanding words. I'm so glad to hear that your Mom finally beat it. Thanks for your thoughts.
Jen - Thank you! Comments like yours do keep us all strong. It's great to hear from everyone. xo
Oh Leslie! You are so strong, Chris is so strong, Maddy is so strong and Jerry...well strong is an understatement! Positive thoughts and prayers are coming to all of you. Take it one hour at a time...that is all you can do through this kind if stuff. It is tough, but soon EVERYONE will be home, healing and feeling good.
HUGS!!!!!
-Brenda
Wow! I knew you were all going through a lot but I really had no idea just how much... You are always in our thoughts as we love you all so much. But now more than ever we will be sending positive thoughts and energy your way. Please let me know if there is ever anything I can do and know that we are all behind you.
Leslie, thank you for sharing this on your blog. You have done a wonderful piece of writing. I so understand your feelings- I think I would feel the same if Dave was in this position. I also believe that talking about it is helpful especially if it doesn't make sense. I also understand Chris' feelings and know that I would do anything to help my Dad. Much love and support to you, Chris, Jerry and Maddy during this next month.
xo
T
Thanks Brenda, You are a fantastic example to all of us for how to survive a health crisis. (So glad to hear Joey Coop is doing better!)
Tara - thanks so much for your words and for all your love and support. xo
hugs to you all!! i totally understand and Leslie you are not selfish - it is always good to prepare for the worst and keep hope in your heart because you will all make it through in the end. life is very precious and time is always short - make the most of your time - be positive and stay strong. cancer is a rough road but while i was on it i met some of the most amazing people. any thing i can do you let me know even if you just need a ear. thinking of you all!!! xoxox
Thanks for the hug Heather. Your words are comforting, especially because you know this fight intimately. You remind me that the challenges in life show us things we might not have otherwise seen. xo
We are sending our prayers and all our love. Always keep the faith. May God bless ALL of you, on this journey!
Wow...Your entire family will be in my thoughts and prayers.
Sue
Thanks Serena & Lou!
Sue - thanks so much.