Update - Transplant Day

Lucas slept in this morning, he woke up at 9. This was his day; he and his sisters. There was a queue of people waiting to come in and perform the checklist, but they knew what a week our little guy had been through and they let him sleep. Smart move ! He slept 13 hours last night. He also napped today when the beautiful cells harvested from his little sister entered his body.

The past week was hard, not that he complained, but the prior 48 hours, Lucas had been woken up to potty every 2 hours to make sure the Cytoxin (chemo) did not damage his bladder. The prior 3 days to that he had to take a shower every 6 hours to keep his skin from burning from the Thiotepa (chemo). The 3 days prior to that ? Well, Lucas had radiation on his body 2x a day on a gigantic machine in the basement of a gigantic hospital. The 3 days before that ? Cranial radiation to make sure no cells were in his central nervous system.

195 days ago, Lucas Patrick Gourley , age 6 at the time , was diagnosed with Acute Myeloid Leukemia at Dell Children’s in Austin. He was transferred a couple weeks later to MD Anderson in Houston where he had 2 unsuccessful rounds of chemo and then spent a week in Cincinnati. Lucas has been treated at Children’s Hospital of Philadelphia since October 25th, 2020.

So, being that today was day 195 since diagnosis, it was especially sweet when the team made him a special poster that is now in his room.

Dylan (aka DD) woke up this morning and had to skip her breakfast. Mommy let her have some apple juice 6 minutes before the 7am clear liquid deadline for those undergoing general anesthesia. Today was the big day. She came to Philly in December the first time but the transplant was postponed. DD as been ready to give Lucas her marrow since September when they swabbed all the kids cheeks and found out she was a perfect match to Lucas. DD wasn’t allowed to be with her brother, but they got her marrow to the lab just as quick as they could, 2 doctors performed the extraction (harvest) for Dylan while Mommy came up to 3 to say hello. The nurses said DD couldn’t come upstairs to see Lucas, so when she was awake enough she went down to the lobby. We could see them down there from the window. I stood behind Lucas and snapped this one.

Lucas infusion just finished. A lot of people said it would be anti-climactic but to me, and I think for our family there was nothing anti-climactic about having 2 of your kids in the hospital undergoing procedures to save one of their lives. I think, to be frank, this was a spiritual moment.

The chaplain came in along with the doctors and nurses, they blessed the cold bag of Dylan’s donor cells. We put rosary and prayer beads over the bag. We prayed, she prayed, the most beautiful prayer, followed by The Lord’s Prayer, which everyone in the room said in unison.

I closed my eyes, Lucas doesn’t like to see me cry. The tears leaked out into my mask, but I don’t think he noticed. He was very tired from the ‘big deal’ the adults were making out of this. It was time to get down to business.

Lots of amazing texts, stories, new friends that used to be strangers. Unity, love, togetherness. Honesty. This is not the time for sugar coating, it is the time for honest conversations and proper prioritization of what matters.

I put together this list to help answer similar questions everyone (including us) has asked.

FAQ’s:

1) How long will Lucas be inpatient?

Depends on how fast the cells ‘engraft’ i.e. become a part of his body. But typically around 4-6 weeks total stay for the transplant round which is the round we are in.

2) How long until Lucas can go home home (to Austin) ?

Typically around 100 days after transplant kids are able to get more than a 15 minute drive from the hospital that administers the transplant.

3) Whats the next step?

The next step is to take this one step at a time, one hour at a time, one day at a time. Staying in the present is the way to stay in the light.

4) How is Lucas ? How is Dylan ?

Lucas- The infusion of DD’s cells went very well. He is still very tired, relaxed, throat is sore, he is not eating a lot, on a couple of different nausea meds. Talks about sports a lot, loves his little sister and his big brother. Loves shooting hoops on our Celtics goal, and can’t wait to watch the Celtics tonight. Lucas is a warrior who doesn’t like to talk about his feelings a lot but we know they run deep. God visited this room today, you could feel it.

Dylan- throat is very sore from the tubes, she is very tired and Mommy is taking care of her. She and Mommy are at our house house in Fitler Sq neighborhood a couple of minutes from CHOP. We facetime frequently, Dylan loves her bro. They waved at eachother for a long time. The Holy Spirit , I am telling y’all its legit .

Here is a copy of the blessing of the cells that was read to us with me and Lucas holding the cells today.