Three years ago, Amy moved from Michigan where she has lived most of her life, to Seattle Washington to be near her youngest son, closer to our mom and to receive incredible care at the University of Washington Medical Center. Amy has a Common Variable Immune Deficiency. Her immune system is so suppressed that it can not fight any disease. As a result, she has been sick the majority of her life. In addition, she has a diseased liver that is causing granulomas to develop all over her body. She has rheumatoid arthritis as an added bonus. All of the medications required to treat her myriad of ailments have her on the fast track to, without doubt, developing Non-Hodgkins Lymphoma, an incurable cancer within an unknown timeline, yet not to exceed 10 years-ish. Her vast team of doctors deemed the bone marrow transplant necessary. Amy entered a new world in the Seattle Cancer Care Alliance and became in need of bone marrow.
[Disclaimer: I may or may not have listed her illnesses correctly. Forgive me. If anything, I’m sure I left stuff out.]
Out of love and genetics, we three siblings were tested to see if any of us would be a blood donor match. It was really no surprise that Jen would be not only a match, a perfect match to our sister in need. I never made it past the prescreen as a result of my cancerous past. Our brother was also not a match. Siblings are the best option of bone marrow match, a fact I didn’t know prior to this process.
Once the donor is identified, whether through family or anonymously, the next greatest challenge is having the recipient well and able to go through the transplant process. Twice the transplant was “indefinitely delayed” because Amy’s body wouldn’t cooperate enough to get the thumbs up from all doctors involved.
While Amy was in and out of the hospital, Jen, who lives in Arizona, had to incur not only the initial flight costs for testing and the actual procedure, but the additional costs of flight changes. Juggling work and time off added to her stress ramping up to the “Big Day.” Not once, but three times.
The “Big Day” finally arrived this week. I was assigned the role of “Caretaker of Jen” while my mom managed Amy and her care.
We had a family dinner Monday night with lots of laughs. For Jen, it helped ease her nerves. For Amy, it was her last meal in the company of a crowd for a many months ahead.
Bone marrow is extracted from the donor in the morning and transplanted, similar to a blood transfusion, into the patient late that same evening. The extraction process involves 2-3 small punctures on the low back hip bones. Through these punctures, 150-250 bone marrow extractions take place, directly into the bone. The entire process takes two hours. Jen ended up spending an additional 8 hours in recovery as the pain was far greater than she anticipated. All told, we were in the hospital for 13 hours.
While the altruistic donor was giving, Amy was receiving her final doses of radiation. Amy received three doses of chemotherapy and two doses of low-level radiation in the days leading up to the transplant to suppress her system, creating a clean slate for the new bone marrow to work its magic.
Amy was in radiation when Jen was released and we headed home. Amy received the gift of hope at 10 PM. Amy had a few typical reactions to the bone marrow that slowed the process a bit, but overall, the transplant was an initial success, ending the next morning. Amy was at her apartment by 5 PM Wednesday night.
I only saw Amy maybe a whole three hours while I was in Seattle since I was on donor support. I don’t know all of the details of her experience but with her incredible medical team, she was, and remains, in great hands.
Jen has always been the “Baby” of the family. Her nickname, among many, was “Whiny Wimp” because, well, she whines and she has zero pain tolerance. In total contrast, I have a very high pain tolerance and my nickname was…well let’s just say my 1970’s era CB handle was “Aggravation”…but I don’t whine.
Pairing Jen and I together is a hilarious riot on any given day. Putting us in pre-op together with me as her nursemaid could have been a Saturday Night Live skit. Oh, did I mention I lack compassion? I’m working on it, but nursing will never be my career choice. She’s hot, she’s cold, the pillow this, the blanket that and how is it possible to even squish your face so tight when they insert the IV? The IV. I didn’t know she doesn’t like IV’s. Now I do. Where I may have lacked compassion, I was a pillar of patience. I may have uttered at least one “suck it up buttercup” to her, but she was too busy to notice as Jen received a tremendous amount of attention and love for being the donor. Being a bone marrow donor, is truly a selfless gift and Jen deservedly was given praise for putting others first.
The highlight of my morning came when the anesthesiologist gave Jen the “relaxer” just prior to going into the OR. The doctor, anesthesiologist and I walked alongside Jen laid on the gurney as we rolled her to the OR. You could tell the moment the “relaxer” took effect. Jen, completely quiet up to this point, flirtatiously said to the doctor, “Doctor, SCCA speaks so highly of your work, but they never said you were sooooooooo handsome.” The anesthesiologist and I laughed loudly while the shy and quiet doctor, turned bright red. When I finally got to see Jen later that afternoon, she had no recollection of anything past the doctor consult, prior to receiving the “relaxer.” I have gotten a million miles out of that moment.
Jen heads back to Arizona on Friday and will fully recover within 2 weeks. Though infection is possible, it is unlikely. Jen will be sore and tired. Because she lives at 7000 feet, she may experience more tiredness than normal.
Amy visits the Cancer Center daily for monitoring. We won’t know if the bone marrow is accepted for months and up to a year. She has a long road yet ahead. Infection is the most common complication after transplant and can be life threatening. Because the body’s immune system is compromised (more so than normal), the risk of infection is high. Another concern is veno-occlusive disease that can occur within 20 days of transplant. Radiation and chemotherapy treatments can cause a buildup of dead cells that block the blood vessels of these organs. About half of all bone marrow transplant patients develop this complication–which can be deadly. Those at highest risk are patients with pre-existing liver disease, infections or those taking antibiotics at the same time as their chemotherapy treatments. Amy has these pre-existing conditions so we’re on alert. If that wasn’t enough, there is always Graft versus Host Disease that occurs when the newly transplanted bone marrow cells reject the body. In acute GVHD, the condition begins within 100 days of the bone marrow transplant. In chronic GVHD, it may not surface until 3 to 12 months after the transplant. The condition usually starts as a skin rash that progresses to involve the liver and intestinal tract. Preventative medication is given to transplant patients to combat this condition before it can begin. Once this complication develops, it is usually treatable but can be life-threatening.
The bone marrow transplant is an attempt to give Amy new life, free of some or all of her known diseases and ailments. Yet, there are serious potential obstacles she may have to hurdle along the way. We can only hope and pray at this point.
Huge thanks to our friends and family across the nation for your love, kind words and prayers.
Thank you to my employer, Ware Malcomb, for your flexibility, patience and continuous support.
A shout out of sincere thanks to Northern Arizona University, Jen’s employer, for having excellent benefits to support her generous donation.
UWMC & SCCA, what an incredibly handsome and beautiful team you have! Thank you for your tremendous efforts, kindness and compassion that you give daily. Please take good care of Amy.
Love and hugs to my mom for all that you do to help Amy through her struggles. I love you momma!
Jen, you are good and sooooo handsome with incredible core strength. I love you and Wendall. Go Blue!
Amy, you have gone through so much and we can only hope that the upcoming days, weeks, and months throughout this year are without infection and disease and you are given an opportunity to live again. I love you.
If you are interested in donating bone marrow, contact your local Cancer Center or register at https://www.deletebloodcancer.org