- We were surprised to find out that Duke does only 200 of these transplants a year and has only done 2000 since 1983 when the program began. (I don’t think that is because there aren’t more people that need it. It is because only a select few qualify and can endure it.) It has been described as going to hell and back by many medical personnel, but it offers the best prognosis for long term remission in MM patients.
- Ernie’s overall physical condition will be evaluated in the next 4 weeks to insure he is a candidate for transplant. This includes: lab studies, Echocardiogram, Pulmonary function tests, CTscan, PETscan, MRI, bone survey, bone marrow biopsy and aspirate, and a dental exam. After the results are reviewed he will hopefully be enrolled in a treatment plan.
- A central venous catheter (CVC) will be implanted by a radiologist and that takes about an hour. Even though he has a port, this catheter must be used because more than one line can be attached to infuse multiple medications. A part of the catheter is outside of his body with 1 or more lines and will not be removed for an extended period of time, therefore I must learn how to take care of it, flush it, and change the dressing.
- Ernie’s transplant is called “autologous” meaning they will collect his own stem cells, freeze and store them and then give the cells back to him after 2 days of high dose chemotherapy. The terms “stem cell transplant” and “bone marrow transplant” are used interchangeably. Our insurance company must authorize the transplant before proceeding.
- Duke will need to collect 5 million healthy cells to freeze, and that process is called apheresis. That can take from 1-4 days, 6 hours a day. Hopefully he has a lot of healthy cells and it can be done in a day! He can be hooked up to the machine lying down. There will be side effects as with every procedure they will do and we will be prepared as best we can be.
- Next comes the preparative regimen…high dose chemo for 1-2 days. (He will loose his hair within 2 weeks of these treatments.) Then he will be given the infusion of stem cells and closely monitored for any side effects. Next we wait for engraftment, which is when your body accepts the transplant and your white blood count returns, usually 3-4 weeks following the infusion.
- We will be living in a 2 bedroom, furnished apartment near Duke, as we must be within 10 miles of the hospital should Ernie begin to run a fever any time during this process. I must take his temperature every 4 hours initially. Infection is the number one complication along with, anemia, thrombocytopenia (decrease in platelets for clotting), pulmonary complications, pain management, nausea, vomiting, anorexia, diarrhea, constipation, stomatitis and mucositis (inflammation of cells in digestive tract and mouth), and skin changes. I will be following a strict regimen of medication and monitoring while in the apartment, as well as following every precaution for eliminating germs.
- Ernie will be what is called “neutropenic” which basically means he has no immune system. Therefore he can only eat certain foods, prepared in very specific ways, with careful attention to temperature. He can only drink distilled water or water treated by reverse osmosis and we will have to wear masks. I will be given a calendar to keep track of his medication schedule and record on a daily basis, and will be driving him back and forth to Duke every day while in the apartment.
- I cannot say how proud I am of Ernie and how he has handled his diagnosis and job loss. Life as he knew it has been turned upside down and he has been the picture of faith, strength and determination. He has been appreciative, positive, faithful, patient and loving. The doctors are amazed at his attitude, knowing so many who are depressed, discouraged, or down and out. He has graciously “let go” of so many of his prized possessions, developing a whole new appreciation for his family and home. He has kept his sense of humor and been kind to all of us. He has swallowed his pride and shared his heart. I love him more today than yesterday and am honored to be by his side on this journey back to health.
- As you may realize, this is a serious and huge undertaking for both of us. We covet your prayers during this time that:
- Ernie will continue to qualify as a candidate
- We will both remain healthy, strong and free from colds leading up to the procedure
- Dr. Kritz and Dr. Gasparetto will be given wisdom as they make decisions
- The side effects will be minimum and tolerable
- He will remain strong enough to get up and walk
- He will not develop pneumonia
- He will continue to be positive, have hope and faith that he can beat this
- I will have the stamina, patience, and health to be Ernie’s 24/7 caregiver
PS. Dad also got a new walker this week, and is thrilled that it goes over indoor obstacles (throw rugs, carpets, etc.) and outdoor obstacles (pavement, gravel, grass, etc.) easier than his other one. But I have to say that he was not the only one that was excited about the walker's new capabilities!
As you can see, the walker is equipped with a basket so Dad can now take things with him from place to place. However, when Nathan and Natalie saw the "pouch" it was quickly filled with a baby bed and covers, a yoyo, a baby toy, some "beep beeps" (cars), a mascara kit, a UCF Knight doll, a UNC ball, and a few other items. Dad was a great sport as the three of them transported the items to Nick’s room, where they unloaded and sang some unloading songs. Then they loaded it back up again for the trip down the hallway to Grandpa's and Grandma’s bedroom where they unloaded again, sang some songs and did a few orchestrated spins. Then they loaded again and made their way back to the toy basket for another unloading. To use Dad's words: "It was a complete success by the NAT’s MOVING and SINGING SERVICE."
You are surely loved by us, Dad! Thanks for being such a wonderful father and grandfather. We are so excited that you are a candidate for the Bone Marrow Transplant and will be praying for you ever step of the way! And though your walker is very cool with the new basket and high-tech wheels, we will be ecstatic to see the day when you don't need it anymore! But for now, we are still saying, "Cheers for Grandpa!"
