It is almost the end of day 16, and we are fully immersed into “Camp Transplant.” We are kind of ready to say farewell to this place, but unfortunately it is home for just a little bit longer. We have been calling it camp because it is during the summer and we are away from home, but we have yet to make a lanyard, paddle in a lake, catch a firefly, and there is absolutely no horseback riding. Other than that, this is just like camp in the sense that I have to share the one shower with the 17 other families on the unit, eat from the yellow food group, sleep in a super lumpy cot (chair/recliner), and make sure nothing hits the floor – yeah, it is just like camp. Leslie’s experience is just like camp too except that it includes heavy doses of chemo every 12 hours, has no sunshine (he cannot leave the unit), and he doesn’t get to have kumbaya moments around the campfire with his fellow patients – yeah… (again) it is just like camp!
While it has been far from the dream vacation for him, it is everything (plus more) that they told us it would be – we would start out with some boring days, both before and after transplant day, change into some not-so boring days, and then he would finally start to feel better. While we thought we were prepared, we have since learned that no one can be prepared for this – it is one of the hardest experiences anyone can go through. We are anticipating better days, and thanks to you all keeping our spirits high, we are plugging along and continuing the fight. Some days are harder than others, and it makes it even more difficult when we cannot reach out as much as we would like since this is the phone-service sucking capital of the universe. We are also both having a hard time not being there for the kids – Dana’s car was broken into the night before Leslie’s transplant, but she, being the ultimate trooper, did not tell us until the day after – luckily she wasn’t hurt, and Leslie’s car is available to her for awhile. The kids have been nothing short of amazing taking care of all that has to be done (really all of it!) while Leslie recovers. They have had to call in the HAZMAT team to clean, call the carpet cleaners, and deal with other things related to our house, our dogs, our work, or whatever else needs some attention, all while dealing with what is happening with their dad and navigating their own lives as well – they are incredible people, and we are lucky indeed. We have seen them a couple of times, and they were able to be here on transplant day, which helped tremendously. It has also helped that the nurses on this unit are exceptional, so he is beginning to see the light at the end of the tunnel – it just isn’t as bright as he would like it to be – yet.
Before he was admitted on the 21st of June, we were told that his tumor was in remission, which was (and is) fabulous news, and that the transplant was needed to further beat down that dirty little sucker. So here we are at Day T+9 (they do a countdown like we are on a rocket ship), and looking at a discharge day late next week. The transplant day, or Day 0, is considered his new birthday, and will forever be the day his doctors will reference. Prior to June 27th, he had to have 3 to 5-hour sessions of chemo twice a day for six days to wipe out everything – good and bad – including all memory of any immunization that he once had. This cleaning out is what makes the transplant so dangerous because he literally has no way to fight off even the tiniest of germs. He will have to have all of his childhood immunizations again, and his body has no memory of things like the chicken pox, making him hyper-susceptible to all kinds of stuff until he can get his new baby shots. His counts, or levels of white-blood cells, bottomed out a little earlier than expected about seven days ago, meaning he has absolutely no immune system right now. His counts started coming back up early this morning, and while this is great news, he still has a long road ahead until he is back to normal. He cannot be around children under the age of 4 until after Christmas; he cannot go outside for at least 30 days; he can’t be around people for at least that long, and he cannot eat in a restaurant for 100 days. There are a million more rules, and I am a little anxious about remembering them all, but I know this will all be worth it in the end.
We would never have made it this far if not for you all, and there are not enough words to thank you for all that you have done for us! Thank you for everything; thank you for being there for our children when we cannot be; thank you for thinking of us even when we haven’t reached out; thank you for your prayers, your thoughts, your kindness, your gifts, your cards, the food, the texts and emails; thank you for the chocolate, the mints, the books, the magazines, the rotating earth (he will get this); thank you for the Starbucks cards, the frozen meals, the mini-therapy sessions; thank you for the poster and cards from the missed 40th class reunion; thank you for the humor, the shells, the games, but most importantly, thank you for your constant love – it is sustaining us through this journey. We love you all!
We will continue to fight because so many cannot. We lost a friend today to this horrific disease, and in his honor, we will continue to carry on and push until there is a cure. Rest in Peace TS – yours was a life well lived, and you will be missed.