Hot Summer Nights

Happy Summer to everyone! We are gearing up again to go back into transplant next month, but have been enjoying a very hot June. JT was weaned off all but two of his medications by the end of the first week of June and was able to get out at that time without a mask, enjoy going out to dinner again and having friends over. Except for the tubes in his chest, it’s been somewhat “normal” around the house for the last few weeks. He’s going to the movies with friends, free concerts on Marietta Square, putt-putt golfing, go-karting, hitting the driving range and “real” golfing. He’s also been hanging out poolside tossing the ball to his friends going off the diving board. He even (against my better judgment) has participated in a couple games of tennis dodge ball – a game the kids made up on the tennis courts they play during adult swim. It can be pretty painful sometimes if you miss the dodge. Nothing quite compared yet to a trip to Turner Field on Monday night with friends to watch the Braves beat the Nationals. We got to see Stephen Strasburg pitch from 20 rows up from home plate! It was awesome!


Sydney has been enjoying her summer as well. It started with a week of Drivers Ed training which has taken me some getting used to. She went to St. Simon’s Island for a long weekend with girlfriends to help celebrate a friend’s 16th birthday. She’s started back up at Fergison Tennis Academy three days a week and spends the rest of the time running with friends everywhere!

Jim flew to Wisconsin during this “quiet” time to spend some quality face time with his job. We’ve been very blessed that they have allowed him to work from Marietta during the transplant. He flies back tomorrow evening as we get the ball rolling again.

And so it begins…bright and early in the morning. We have to go through all the prep work like we initially did in March. JT will be injected with the glow medicine (it’s called GFR but I can’t remember the acronym) to test kidney & liver functioning, Echocardiogram, Labs, signing contracts, psychology evaluations, and a new addition for the radiation portion of the procedure. Sydney will also go through the same series of testing with blood work, physical and psychology evaluations and new for her will be some pre medication to help boost her blood cells since she ended up anemic last time. We have four appointments scheduled over the next two weeks to accomplish all of this.

July 20th was the date set to admit JT and when he would begin radiation and chemo. July 27th was the date for the actual transplant when Sydney would come in. However I received a call from the Doctor today and unfortunately that has been delayed because the transplant unit is full at the moment. The plan is to proceed tomorrow with the initial tests and as the July 20th date draws nearer, we hope to have a better feel for a new admit date. I’m not too happy with the news because I wanted Sydney done with her portion and healed by the time she returns to school on August 5th. But as in everything else that has transpired to date, it’s not really in my control is it? And if I think too hard about it, it makes me sad to think that so many children need a bone marrow transplant to save their lives. It’s not an easy thing to go through. Wow…and here my son is doing it twice!

Take care everyone. Thank you for checking up on us and for all your prayers. Hope you continue to enjoy your summer as well!

XO Sabrina