Home Away From Home

Where do the days go? The first week in the Bone Marrow Transplant (BMT) Unit has been a whirlwind of people and medicines! There have been a lot of both. JT entered the Unit on Tuesday morning and promptly asked if he could go downstairs to the cafeteria. The kind nurse informed him this was his home away from home for awhile and the only time he could leave his room is to do laps around the nurses’ station. That, among some other rules & procedures that they failed to mention in our consults, really hit hard for all of us with the realization that we are moving forward to a cure and just how serious a transplant can be.

The first round of medicines that JT started on is something called Antithymocyte Globulin or ATG. There are two types…rabbit and horse…they have him on rabbit. ATG is immunosuppressive “drug” that works to prevent rejection of Sydney’s bone marrow. I haven’t been able to find a good explanation on line to link for you, but from what I gather, the addition of ATG greatly increases the odds for a successful outcome of the transplant (and I could go into a little conversation about T-Cells, but I won’t bore you). So my little bunny received four days of it along with copious amounts of steroids, Benadryl, Tylenol, and other happy medicines to deal with all the side effects.

Today, JT received his first round of Chemotherapy. He is getting two drugs in his cocktail. One is called Cyclophosphamide (Cytoxin) and the other is called Fludarabine. Both these drugs work to suppress the bone marrow. He will receive these on & off for the next four days. On Tuesday he will begin another anti rejection immunosuppressive drug called Cyclosporine, and then on Thursday he will wake up to Transplant Day!

He’s had many different reactions ranging from fever, to headache, to nausea, to agitation and the nurses have been really good about treating all of them. The biggest problem we’ve had this week has been his blood sugars. The steroids, in addition to making him meaner than a junk yard dog, wreak havoc with his diabetes. This has been our only issue that we’ve really had to go to bat for JT’s well being and after 4 days of arguing with Endocrinology, I think they are finally on the same page with Jim, I and the BMT Team.

So for those of you who have stuck with the boring medical part of this entry, now to answer your burning questions…No, JT has not thrown up yet. No, JT has not lost his hair. No, the sharpie autographs wore off. Yes, JT has attended school (and according to him liked it – go figure).

As far as the rest of us, we are doing great. Jim and I have tagged team every other day all this week to keep ourselves “fresh” to care for JT and Sydney. What we discovered quickly though is we really didn’t have time to accomplish anything at home that needed to be addressed because we were always on the move between home & hospital. Beginning last night we extended our stay to two nights in the hospital with the hope of resting, relaxing and taking care of business while we are home. In addition to that, we’ve been able to continue to attend Sydney’s tennis matches, get her to school, practice and to hang out at the mall or friends houses and keep life as normal as possible for her. She came to the hospital on Friday to visit, but after a long day, JT was sound to sleep by the time she arrived. She came back down today for the first dose of Chemo and to have lunch & watch a movie with him.

I will try to track down an address if you are interested in writing him a letter and post it in the next day or two. JT has also been keeping up with friends on Facebook, texting, and playing COD with his friends from school on the PS3. He also enjoys reading your posts on the Pray for JT Facebook group and watching the number of members grow, so from the bottom of my heart I really appreciate your support. We do not need anything at this time. We have so many games, books, art supplies thanks to our wonderful teachers and friends. We are trying to rotate them out because there are too many to keep in our cute little room. We got a digital frame as a gift from a friend which I thought was a great idea and we are in the process of loading it up with pictures for him to have in the room. So if you feel the need to do anything, then email or post a picture of you to the Facebook group and we can add them to JT’s collage. Thanks everyone for the prayers and well wishes. It has been a great source of comfort.

Have a great weekend!

XO Sabrina