On the 21st Stephen started to recieve regular doses of Chemo. The combination is called buflu. The real name is busulfan and fludarabine. It is given during the night at 2 am and 3 am so they can draw blood samples by 6 am, send them to Seatle and have the results back by the end of the business day. This blood test measures how much of the drug is being metabolized. He tolerated the chemo very well.
On the 22nd Josh started coming up to LDS Hospital every morning to get a Nupagen shot. The Nupagen makes your bone marrow over-produce stem cells. The excess cells leak into the bloodstream. He got this shot every morning up through the 26th.
Christmas Eve Jeff stayed with Stephen at the hospital while the rest of us went to a McGuire (my family) Christmas Party. Then we all came up to the hospital and opened our suprise gifts…Christmas Pajamas. What a suprise! Jennie slept over at the hospital with him. On Christmas day, we were able to check Stephen out of the hosptial for a few hours. His immune system hasn’t been diminished yet and so they let him leave around 10 am and return at 8 pm. It sure made our Christmas day wonderful. Jeff took Josh up at 8:30 am for his shot, then they brought Stephen and Jennie home with them. We waited for them and then went in to see what Santa had brought and opened presents together. Stephen was feeling great and ate a full Christmas dinner. It was truely a wonderful Christmas gift to have all our children together at home on Christmas day.
On the 26th Jeff and I took Josh to Primary Children’s Hospital and checked in around 8 am. Josh wasn’t supposed to eat or drink after midnight. On the way to the hospital he confessed that he had a mini milky way bar on his way out the door. I guess he ‘forgot’ for a brief moment. Ahhh! We told the doctor and nurse and they said that he will just have to have his line placed without being fully sedated. It all worked out. I’m glad he told us. They used a numbing gel on the area and then gave him a small dose of Versed. The operating room was decorated like the Jazz locker room. It was really cool. One wall had mural on it and the others were painted like lockers. The cabinets were all painted like lockers as well. When he was on the OR table and looked up at the ceiling, several Jazz players had signed tiles. So he lay on the table looking up and trying to find different players names. We left him there and they brought him out about 20 minutes later. He had a line placed in his femeral artery with 2 access lines on it. Then we went up to his room and started the apheresis. It is a fasinating process. It went quite well. Once during the collection he got a clot in his line and they had to stop and inject the line with something to dissolve the clot. It took about an hour and then we were off and running again. He got kind of sick so they gave him some benydrl and he slept through the rest of the process. I woke him up as he finished so he could see the bag of cells and plasma. When the nurse told him he was done for the day he threw one arm up and yelled ‘victory’ and then fell back asleep. It was really funny. He felt great after the apheresis was finished and we just watched TV and he played on his PS Vita. About 10 pm they called to tell us that they had enough cells and so he was definately finished. They needed over 5 thousand and had 6.6 thousand. He was so happy. The nurse gave us the choice of sleeping there and going home in the morning or going home right then. He was out of there as fast as possible. He couldn’t wait to get back home. It was a huge sense of relief to have this finished. Josh is one happy 10 year old right now. We are really proud of how well Josh handled it. It was a lot to think about and go through. He was tough emotionally and really hung in there till it was done.
Today is Stephen’s 4th birthday this year. His first birthday was May 2nd when he recieved his own stem cells in his first tansplant. Then June 9th, his actual ‘birth’ date. July 24th, his second transplant day. And finally, December 27th – the day he and Josh share stem cells. He was given several medicines to prepare his body for the stem cells. For the most part, they are all used to suppress the immune system so that it doesn’t immediately attack the donor stem cells. About 1 pm Red Cross arrived with his cells. It took about 30 minutes to recieve them. He immediatly got sick. He started throwing up and so he got some adavan as well. This put him to sleep for about 4 hours. When he woke up he felt much better. He ate a full dinner tonight and enjoyed his ‘birthday’ cake that the food services sent him. Now we are chilling and watching BYU Basketball. It’s a great day to have over with. The transplant is done.
The next days, weeks, and months will be the real story. How Stephen’s body reacts to the new cells, when the stem cells engraft, how much do the donor cells fight with his body, how much graft-vs-host disease presents itself, and if the new cells able to recognize and kill cancer cells. We will deal with each day as it comes. For now we will enjoy the moment and know that several major steps are behind us.
Love to you all!