We have been anticipating this decision after his bone marrow biopsies revealed chromosomal abnormalities earlier this year. While we feel confident about the decision, it is still overwhelming.
The doctor suggested doing the transplant next month and staging this month, which would mean only one more round of Vidaza, however, we asked to wait until September 2014 for the benefit of our entire family. Our eldest daughter leaves for college and moves into her dorm room on August 20, 2014. We felt it was imperative that we be there to help her make this life-changing transition. Our other two daughters begin school on August 26, 2014, which is equally important for us to be home for. We would feel more comfortable getting the girls situated into their school routines before taking off to Cleveland for the required 100 days or so.
In light of pushing the transplant back one month, it is very likely that Todd will do a fourth round of Vidaza in August to keep his blast counts down. Round three is already scheduled for next Monday, July 14, 2014.
Staging, which consists of two days of meetings and a thorough medical exam and tests, will be done mid-August. Todd's biological brother Tom, who is the perfect-match donor, will also undergo a thorough medical exam for one day in August too. I would like to pause and say how thankful we are that first: God has provided Todd with a perfect match who is a family member, and second: how thankful we are to his brother Tom whom is willing to do this for Todd.
Todd's staging will include tests like: blood tests for infectious diseases and organ functions, an EKG, an Echo cardiogram, chest x-rays, pulmonary function tests, and possibly a CT and a PET scan. Another bone marrow biopsy will be done too, to evaluate blast counts pre-transplant. And, if this wasn't enough, he also has to see his dentist to have him perform a cleaning, and dental evaluation clearing him of any abscesses, lesions, severe dental problems that will need fixing within the coming months, or any other infections in the mouth or gums.
Meetings will include a two-hour meeting with the Nurse Coordinator who will talk to us about the intensive chemotherapy and what to expect during the whole transplant process. Then we will be spend about 1-2 hours meeting with a social worker, who will help deal with concerns like housing for me during his hospitalization and housing for both of us once he is released. I will likely stay in his room or in a nearby hotel. While he will only been in the hospital 4-6 weeks, we have to stay within one hour of the Cleveland Clinic for the remainder of the 100 days. We are hoping to stay in the nearby Hope Lodge, courtesy of the American Cancer Society, but we have to get put on a waiting list via the social worker for this to happen though. The social worker will also address any concerns we have with the emotional stress and discuss coping mechanisms we can use to get through the transplant. We already returned a questionnaire that outlined our family and our needs in the upcoming months.
We were sent a three-ring binder of information to "study" before the transplant. We are "required" to read the first three sections before the meetings for staging. Some of this information includes the Central Venous Catheter that they place in his chest for administrating medication and taking blood samples. Information on how to change the dressings, clean the tubes of the catheter and how to give him subcutaneous (under the skin) injections of medications was also provided for study. Phone lists, Cleveland area maps and guides, hospital maps and guides, packing lists, medication information, follow-up care, a chapter on Graft vs. Host disease, and staying healthy guides were also included for reading.
I will elaborate as I learn more in future posts, but in a nutshell, Todd will be admitted and receive 8 days of intensive chemotherapy that will kill all his bone marrow (along with healthy cells). The following day, his brother will be put under general anesthesia where he will undergo the bone marrow harvesting from his hips. Todd will receive that bone marrow the same day. Then the fight begins for his body to accept the new bone marrow and "graft" into his system. From then on, Todd will have the same DNA as Tom. There is a chance he could develop "Graft v. Host disease" where the cells in Todd's body try to kill the new bone marrow thinking that they are fighting off an invader. There is no re-do if this develops into a severe case of Graft v. Host. Then, he will also have to fight everyday infections that his immature immune system won't be ready to fight off, at least not for some time. Four-six weeks of hospitalization will be followed by weekly appointments and trips to the ER if he develops even so slight of a temperature of 100.4 degrees. If all goes well, he will be released to go home after the 100 days or so. We are hoping this will be in December before Christmas. Then the next six months to a year, he will still be developing a stronger immune system, taking medications, and fighting any other complications. It will be unlikely that Todd will be able to return to work for 18 months to 2 years, but this is just a guideline. Long term or even lifetime complications from the chemotherapy are always a possibility.
Not only is the preparation for the transplant overwhelming, but preparing for the needs of daughters while we both are gone is also a major concern.
Questioning our decision was even an issue. The first few days after the appointment, we found it easy to second-guess our decision to go forward with the bone marrow transplant. It is easy to read some one's blog who went through a transplant and had complications afterwards or to even look at any negative statistics. The doctor said, our lives would be "different" after the transplant. I asked in what ways, and she told us that Todd could have to remain on antibiotics and/or steroids for a long time afterwards. Some people have to take them for life. While this isn't a certainty for every patient it is a concern: How will his "quality of life" be post-transplant one year, five years, ten years, or twenty years out? But, we must remember that God is in control and has provided everything we need NOW for the transplant and that without it our lives would be in constant limbo living for the next bone-marrow biopsy and blood test every three to six months. Or even worse, having the MDS develop into full-blown Acute Myeloid Leukemia which could kill him quickly or make any chance of treatment difficult or impossible.
Yes, it is going to be a long journey, but we are know it is the right one to traverse. Yes, the thought of it and discussing it can be so raw emotionally that I can't help but cry, but I know it will for the best.
Your prayers and help are going to be called on for the next six months to a year! While our goal is be home before Christmas 2014, the recovery will not be over. Things will still be precarious for the following six months or more.
I know my main request for help will be with our three daughters. For those who live near us, it is you I will appeal to most! I'm sure my mom, who will be staying with the girls, would appreciate the help as much as it will ease my mind to have help with things like: rides to volleyball practices and games, rides to Cleveland so the girls can visit safely, and homework tutors (likely in Algebra!), or for someone to encourage to Abby, living away from home for the first time.
For Todd: notes and cards of encouragement, maybe care packages of homemade goodies when he gets to the point he can enjoy them.
I'm not real sure just yet of what we will need, but we will appreciate anyone who will just be with us in spirit.
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