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Happy (Re)Birthday Dear Jaymun


12-1-06

Whew! It has been a busy, busy week for our family. The transplant had seemed like such a far-off event and now it's all over. I will try as best I can to recap the events leading up to Jaymun's Big Day. Where to begin?

Wednesday night, I packed all our "stuff" and drove with Kirsten, Devon and Sean to the Ronald McDonald House to stay overnight. Devon had been asking to stay there for quite some time and it seemed like the perfect opportunity. Most of us have seen ads for the RMDH or have dropped extra change into that plastic bin under the McDonalds's drive-thru window, but very few people (fortunately) have ever had to use its services. It's a place of lodging for families of patients who spend extended time at hospitals. Many families have long drives back and forth for medical care and the RMDH provides them with a place to sleep and eat for a small donation a night. It is a beautiful place, tastefully decorated and well run, mostly by volunteers. Families can come and go as they need to and are able to use the kitchen facilities to make their meals, just as they would at home. They also have spacious play areas for the children, with plenty of room for everyone to relax. This place is a godsend for many families who find themselves in tight financial situations. They are able to stay together as a family in a clean, safe environment with the comforting knowledge that the hospital is just across the street. All I can say is, Keep giving that change when you see those donation boxes. There are no words to explain how grateful families are to have such a place to stay in difficult circumstances.

We stopped at the hospital first to visit Dave and Jaymun before our sweet boy went to bed for the night. This photo is the last pre-transplant photo of Devon and Jaymun together --our little "blood buddies", as I like to call them. The kids then had a couple of hours to enjoy the RMDH before bedtime. The Christmas tree they have in the House reaches three floors high! I'm thankful Devon had such a carefree time before his surgery the next day. Prayertime that night was a tearful one...we prayed long and hard for all to go well and for Devon's cells to take over Jaymun's body and provide him with a healthy, brand-new immune system. There is something so sweet and earnest about children praying--they can pare all the essentials down to a simple, heartfelt conversation with God.

Finally the Big Day arrived. Devon was so excited to wake up and realize that his time for action had finally come. His surgery was scheduled for 8:30 AM. We got him changed into his hospital gown and they administered the pre-anesthesia medication. It causes some drowsiness and has an amnesiac effect, so Devon's memory is rather foggy about the events leading up to his procedure. He met with one of his anesthesiologists and saw Dr. Margolis before they whisked him away. The other anesthesiologist was a Russian lady who had helped sedate Jaymun a few times for radiation--I feel bad that I didn't snap a quick photo of her with Devon, but things were proceeding rapidly at this point. Dr. Margolis offered to take our camera and videocamera into the surgery room. We were surprised at this, but realized that Devon would probably love to watch his own bone marrow harvest later on!

The procedure took about one and a half hours. Devon was extremely groggy when they wheeled him back out. They had this certificate taped to his bed for him to keep. He was pretty sick the entire day until about 6 PM. Those anesthesia drugs can be hard on the stomach. True to his nature, Devon didn't complain even once the entire time he was throwing up--in fact, he has never once cried or complained throughout any of this long ordeal. We were so proud of him. He just wanted to do his part for Jaymun--and boy, did he ever! We found out that Jaymun was originally going to get about 3 million stem cells from Devon (75 cc of marrow). The initial plan was to freeze extra in case of later procedures for Jaymun. Due to the awesome stem cell / T-cell ratio in Devon's bone marrow, they gave the entire amount of bone marrow that they collected from Devon (200 cc) -- which ended up being 19 million stem cells!!  Devon was impressed that his bone marrow had been so "fruitful" for his brother.

Devon napped a bit after his surgery, but it wasn't long until I heard a hoarse little voice say, "Can I open my packages now?" (Since Devon's surgery required him to lay on his stomach the entire time, he had to have a breathing tube in while he was sedated, and that can sometimes cause a sore throat later on.) Devon wasn't feeling well enough to actually open them himself, but he also didn't want to wait any longer. Sean was more than willing to do the honors. Devon was AMAZED by the amount of gifts and cards from people! He kept laughing and saying, "How did everyone know what I like?" Sean would tear open the gifts and Devon would inspect each one, carefully reading the cards and exclaiming over all the loot he collected. It was a wonderful, wonderful surprise for him to receive so many things from people. Thank you to everyone who sent him presents and cards--it really made his day! As you can see from his bulletin board , he was showered with love and praise from people. One of his doctors told me she'd never seen so many cards and gifts for a donor before.

Jaymun's bone marrow transplant took place at around 5:30 PM. There was an air of excitement on the Hot Unit as all the nurses and doctors wished us well and congratulated us on Jaymun's "Re-Birthday", as they call it. Jaymun's night nurse, Evelyn, was also Devon's nurse and she asked him if he knew why they called it a Re-Birthday. Devon said he thought it was because Jaymun was getting a new life (smart kid). The actual transplant took over four hours. It works just like a blood transfusion, with all the bone marrow running through the tubing  into Jaymun's central line in his chest. Jaymun was smiling away in his bouncy seat, wondering what all the fuss was about! All of our kids were able to watch it happen, although from now on, everyone has to wear masks in the room. Devon was still throwing up for awhile in the beginning hours of the transplant, so he visited Jaymun's room a bit later on. You should have heard his excitement to see his actual bone marrow in a bag! What an enormous thing to experience as a seven year old. They let him have the empty bag when it was finished--it's so sweet to see both Jaymun and Devon's names together on it.

Devon spent the night at the hospital. (I'm pretty sure Sean would have gladly bunked in with him as well, since he and Devon are best friends.) We tried to make it a fun "adventure" for Devon and I think we succeeded, because he was disappointed to leave the next day. He got to order  meals in bed, play games with his mom and dad, and call the nurses in when he needed something. He was the Hero of the Day on this unit and I think he felt pretty important. (And his nurses Evelyn and Stephanie made him giggle when they "thanked" him for being so brave!)



From this day forward, Jaymun will have Devon's blood running through his body. They are connected in a very special way for life. Devon went home today, feeling much better, albeit a bit sore when he walks. Dave asked him last night if he would do it all over again for Jaymun if he had to--and Devon immediately said, "Of course I would." They are blood brothers in the truest sense of the word now.

Jaymun's recovery has just begun. We won't have definite news of how the bone marrow transplant went until 30-50 days from now. It is a waiting game of the cruelest kind, for the next couple of weeks may bring some intense infections and sickness Jaymun's way. Please pray for his strength to get through the next months and endurance for our entire family to weather this storm together. 

Jaymun has proven that life is worth the fight. We are daily inspired by his cheerful personality and the blessing that he lives his life completely unaware that he's so sick. He's taught us that happiness can happen anywhere, at any time...and you don't have to wait for it to find you. Devon has this theory that since he himself is so happy and since Baby Jaymun has been so happy all along , that once his cells take over in his little brother's body, Jaymun will be twice as happy!

I think it's an excellent theory. These two are showing signs of being so much alike already , both in looks and in character. Jaymun has proven that although he didn't have any choice in how his life began with such a sad start, he has the final say in how he's going to handle the circumstances thrown at him. He has shown us that joy is a choice. It's an interesting thing to realize that maybe, just maybe,

being happy is in his blood

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