Yesterday Tyler and I went to Clinic while Ron and his sister took down the Christmas decorations. That means this season I got out of my two least favorite activities of the year – decorating the house and taking down the decorations! Thank you to my wonderful Santa’s helpers!
Tyler had a repeat pulmonary function testing done yesterday since his scores the first time around were very low. They remained very low yesterday. The respiratory therapist will consult with the transplant doctor to see if the testing needs to be repeated at the adult clinic to see if the equipment in the pediatric clinic may be giving a false reading. Poor lung function won’t keep the transplant from happening, but it will mean a lot more monitoring since the the treatment and transplant are tough on the healthiest of lungs.
We also had our transplant consent conference, where Dr. Gamper went through all the potential risks of the pre-transplant chemo, the transplant itself, and the aftermath of the transplant. Tyler balked at a few of the things he heard, but asked the doctor some questions and walked away determined just to get through this whole next year of physical, emotional and social challenges coming his way.
Even though Tyler’s leukemia is currently undetectable, he still must have the transplant. As Dr. Gamper explained, if we stopped treatment now, Tyler’s AML has a better than 85% chance of returning. With the transplant, chance of relapse is reduced to 30% to 40%. Ironically, the bone marrow transplant itself as well as some of the chemos can result in Tyler contracting lymphomas and leukemias later in life.
Tyler will have 8 days of high-dose Busulfan and Cyclophosphamide. These are new drugs to Tyler as they are not AML chemos but specifically designed to kill his bone marrow cells so they can be replaced with the donor stem cells. The effects of this chemo are predicted to be brutal. A quote from the consent form reads,
The chance of dying from this treatment may be 2 to 3 times higher than you would expect with other less intensive treatments.”
On the ninth day (January 25th), he will receive the bone marrow stem cells harvested in Europe and flown to Maryland. Tyler will startDisease (GVHD). GVHD is when the donor cells (graft) start to engraft and treat Tyler’s cells (host) as foreign bodies that must be destroyed.
GVHD side effects usually start soon after the patient recovers from the chemo side effects and can range from mild to life-threatening.
After his transplant hospitalization is over, we will move into some local housing close to the hospital and will remain there until 100 days post-transplant, or early May (barring any complications that could extend our stay). There is a seven-apartment building in Canton operated by Believe in Tomorrow that provides 1 or 2 bedroom apartments exclusively for bone marrow transplant patients and their families. We are hoping they will have a vacancy when Tyler is ready to be discharged. If not, we will go to the Ronald McDonald house or another Believe in Tomorrow home.
During our stay at the Believe in Tomorrow housing, Tyler will spend 3-4 days in Clinic each week. His food will require special prep and handling, and his diet will be limited to certain acceptable foods. Visitors will wear masks, and Tyler will wear a mask every time he leaves the apartment. He cannot be left alone at any time during those entire first 100 days since health crises can arise quickly and require immediate treatment. GVHD remains a huge risk during this time, and up to a year post-transplant.
Once home, Tyler will remain immunocompromised and will still have to wear a mask and avoid infections and illnesses since his new immune system won’t be working for many more months. After about a year he will be re-vaccinated and then should be able to resume more normal activities and exposures to crowds. We have a long road ahead of us, and it all starts next Tuesday!