Transplant Date Scheduled

Before Todd's third round of chemotherapy we drove up to The Cleveland Clinic on July 9, 2014 to meet with his transplant doctor to discuss setting up the transplant. While the Vidaza had some positive results in lowering Todd's blast counts, we realized that this was no long term fix. We understand that some MDS patients receive monthly rounds of Vidaza for 12+ months or more, but many or most of these patients do not have a bone marrow donor match or their health is not stable enough to undergo a transplant.  We have accepted that this is not an acceptable treatment regimen for Todd.


Now that we are resigned to have the transplant, all the scheduling is set.  Staging, or the pre-screening testing that Todd needs to undergo with be done this Thursday and Friday, August 7 & 8, 2014.  During this visit, Todd will undergo a chest x-ray, lab work, bone marrow biopsy, an echocardiogram, an electrocardiogram, and a pulmonary function test.  In addition to testing we will meet with a transplant nurse, social worker, and an insurance specialist.  It is during this time that we can make housing arrangements for our extended stay once Todd is released from the hospital.  To get on the waiting list at The Hope Lodge, a nearby house for cancer patients, his social worker has to make the call. 

During this short overnight visit, we will be staying at a hotel about 20 minutes away from the hospital that gives bone marrow patients special lower rates (because The Cleveland Clinic helps to subsidize the rates) to gauge whether I will spend the nights there while he is hospitalized or not.  If I'm not comfortable being away from him, even for short periods, I may just stay in his room those 4-6 weeks.

 Todd's brother, his perfect match bone marrow donor, has also scheduled his Donor health screening for one afternoon at the Cleveland Clinic.  Todd's dental cleaning and assessment with our local dentist is also set.

I have included a scan of his calendar explaining how the days will be counted in terms of the transplant schedule.  On the day he is admitted, September 8, 2014, a count down begins (Day -9) until the date of the actual transplant, where he will have his brother's donor bone marrow injected, which will be considered Day 0 on September 16, 2014.  Those eight days: days -9 through -2 will be when he receives the intensive chemotherapy drugs that will kill all of his own bone marrow.  Day -1 will be a day of rest before the infusion on Day 0.  The transplant itself will only take about 20 minutes!  His brother will be there that morning to have his bone marrow harvested and then it will be brought up right away for infusion through his Hickman chest catheter.  This will likely occur in the late morning, since the donor is a family member (this makes the process happen faster than a non-related donor).  The days after the transplant will be counted in positive numbers: day +1, +2, etc.

Besides going up for staging this Thursday and Friday, Todd has an appointment on August 29, 2014 for lab work, an assessment, and a meeting with the pharmacist to go over the numerous medications we will be dealing with.  Another visit will take place September 4 and 5, 2014. The first day, Todd will have his Hickman chest catheter surgically inserted, and on the next day I will meet with the nurse to learn how to change the dressings, clean the catheter tubes, and care for the insertion site. 

Right now I am in the process of creating packing lists for me and Todd.  Since I'm not sure I will be able to come home during those 100 days, I'm debating whether to pack for the entire time or not (100 days).  We will be there beginning in the fall, but Cleveland can get colder in November and December.  I'm still figuring out how I will get important mail, whether to have it sent directly to the hospital or have my mom send it up to me in a batches from time to time.  I've got a list of special things I need to buy for Todd, like an electric shaver, since he won't be allowed to use a regular razor. 

In addition to creating lists for me and Todd, I am also preparing a list of things I will need to leave for my mom and a list of the girls' schedules and activities. 

I have had some ask about coming up to visit Todd or to bring the girls.  This would be nice.  I'm just not sure how much company he can have and when he can have it: pre-transplant, post-transplant, while in the hospital, or after he has been released.  This will have to be addressed when I have more information. 

Thank you for all the prayers and support.  We will really need them right now.  Things are a bit overwhelming with all the preparations that need to be made for our stay at Cleveland, the girls' needs here, and getting our oldest daughter moved into her college dorm later this month.  I will feel better once the girls get into their school routines before we leave. 

I'll post more updates after our visit this week.