Day 0 and Day 1

Relief…it happened…Eliot got here healthy, gave tons of bright reddish/pinkish juicy healthy bone marrow to Ethan. There’s a reason Eliot is so large, currently weighing more than Ethan, and is so healthfully plumpy…this was that reason.

Summing up the day in words is tough. Uncle Nate saved the day by hanging out with Ethan for the entire morning, so that I could be with Eliot too. Grandma Mary and I kept busy for the next 24 hours. Eliot was able to stay on 6 North, so Grandma and I went back and forth between the boys easily. Eliot was able to hang out with Ethan for a bit playing some video games. It was a sight that brought tears to my eyes: Eliot in a wheelchair, IV in his foot, IV pole behind him, next to Ethan’s bed, where Ethan sat, Ethan’s IV pole next to Eliot’s IV pole…something is not right about that picture, but at that moment, it was okay, as Eliot gave the greatest gift to his brother that day.

Eliot went in to the OR @ 8 am , got out @ 10 am , and Ethan had the marrow around 12:30 pm . The transfusion was completed by 4 pm , and was uneventful, medically speaking. The staff does a nice job of recognizing the significance of the event, placing a large “Happy Transplant Day” sign on Ethan’s door, personalized for him – along with a certificate laminated with the marrow label, showing the donor, date, etc. Eliot received a t-shirt and a certificate, “I made a difference, I’m a bone marrow donor”.

Eliot and Grandma went home on Tuesday, @ 1:30 pm . While I was sad to see them go, and will miss El a lot, I was happy to be down to one boy in the hospital. Eliot is sore, has trouble walking, and hobbles a bit, mostly on his tip-toes. We’ll manage his soreness with Tylenol for the next day or two, feed him well with some extra iron, a few burgers perhaps, and he’ll be on the run again in no time.

Daddy was at the doctors himself on Tuesday, getting re-checked. Verdict is some sort of bacterial GI infection. He’s feeling somewhat better and is on antibiotics. We all know there was a reason for this…just having a hard time right now figuring out what that reason is…

Ethan is doing well. On Transplant Day, he also started his IV nutrition. His weight is dropping again; he doesn’t eat, and drinks only a few ounces of water a day. He also received a PCA, which is the morphine pump that allows him to control his pain by pushing a button when he needs more pain meds. He uses it well, and is now on his second day of his mucositis bothering him – first his throat, now his mouth.

Overall though, Ethan is doing well still. He’s happy throughout the day, has an occasional sad time (mostly when he learns of outside fun…i.e. Em sleeping over somewhere), and gets out of bed to sit at the desk in his room or sit on the window sill.

Mommy and Ethan keep busy during the day: mouth care (brushing and rinsing 2 times a day), bath of some sort, changing the bed, morning oral meds, afternoon oral meds, nighttime oral meds (all having two different meds in each). While Ethan will take his meds orally, it’s finding the right time that’s tough. And as soon as he finishes them up, most likely it took us so long; the next round of meds is following close behind.

Tuesday is the one day of the week they take swabs of the nose and throat for culturing (all BMT kids do this here). Today it wasn’t fun. So we spent about an hour on those swabs. Mommy did both of them to her, per Ethan’s request. After much negotiating, conversing, deal-making, it came down to Mommy holding Ethan down so that the nurse could get it done. This was the first time in our 3 months of treatment we had to do something like this. Not fun, but we got it done. We’ll see what next Tuesday is like…

Tuesday also included an x-ray and an ultrasound for Ethan’s lung. Each showed a slight, tiny amount of fluid still remaining in his right lung. Clinically not harmful, except that Ethan is suppose to receive a medication four times (Day 1, 3, 6, 11), Methotrexate, to minimize the severity and potential of graft vs. host disease (GVHD). GVHD is where the donor’s immune system (the graft) identifies the host’s cells (Ethan’s cells) as a foreign or different and attacks them, causing rashes, GI upset, etc. Anyhow, the fluid near Ethan’s lung could possibly allow the methotrexate to pool around this area of fluid, which would be bad. So, the end result is that Ethan receives only ½ dose of on Day 1, and the docs will determine if/how much they will give on the other days. The good news here is that Ethan is at low risk for GVHD, as his donor is a fully-matched sibling.

The only bad news we have is not bad medically, but socially…Ethan has a bacteria living inside of him (VRE)…it’s completely not harmful to him…and it is not an infection. However it could be spread to other kids through something that Ethan touched. So, we’re in our room for the remainder of our stay…no walking in the halls, no playing in the playroom. Docs and nurses have to put a gown and gloves on before coming in our room. We have a big green sign on our door that says “CONTACT PRECAUTIONS”….Oh well…Kind of stinks…but if that’s the worst, we’re doing good….

On a good note, when we were going to bed on Transplant Day, Ethan said as I turned out the lights, “That was the best gift ever”…he knows how great that was.