"With every step I take I know that I'm not alone.
You take the home from the boy, but not the boy from his home.
These are my streets, the only life I've ever known,
who says you can't go home"...well said Bon Jovi!
We walked through the doors and have not stopped smiling since. Our first day home I was on operation get organized. Anyone who knows me even a little knows how I hate to have my things out of their place. They have been scattered across states in 3 different locations for too long. Luke's first choice of play was to dress up as a doctor and he asked me if we could "make a hospital"...hmm ok? I suppose. Maybe he wanted an opportunity to turn the table and give me shots and medicine. I was a cooperative patient.
Our biggest goal presently is trying to find a balance with our current new "normal." When we left, Luke was loving school and all of his teachers and friends at TLC. He was running, jumping, playing soccer and t-ball, riding his scooter, swimming...all of these wonderful things that he is unable to do (for now!). This doesn't make sense to Luke on a 5 year old level and this doesn't make sense to Luke's post transplant body. Luke is able to play outside on his swings with some restrictions. This was perfect until we had our first little scare. When he came in from outside I found a tick on his cute bald head. Luckily, it wasn't there long enough and I flicked it right off. There were no consequences other than now I am begging for scooter races on the driveway instead of swing rides in the grass.
We were given great news on Tuesday when we went to the clinic. Luke's total engraftment is 99%. His myeloid engraftment is 100% and his T-cell engraftment is 84%. The doctors were happy with these results. They said that this is the highest he has ever been. After his first transplant his total was 91% and his T-Cell count was 1%. The T-Cell count measures graft rejection. Now we try and be patient as we wait to see what each week brings; while focusing on keeping Luke healthy with a compromised immune system and maintaining his happiness under isolation. It is all good because...We are home!