Around this time of year, I of course, think about Bub's last birthday with us. We had just gotten out from transplant. He had a stem cell transplant.
It's not what it sounds like. These are baby blood cells harvested from his own body. I know... amazing. Anyway, these little cells act like they have homing devices on them and they 'find' the area that needs repair. In his case, the bone marrow, and go there and set up household. Simplified explanation, but pretty much the way the doctors explained it to us.
Anyway, we had not been home from the hospital very long. I think we got out around the 17th or 18th and school started for Boo THE NEXT DAY. Yeah.. a crazy time. And we did TPN at home. TPN is IV nutrition. Yeah we did that. At home. Us. Crazy, huh?! His port was accessed when we left the unit, so we didn't have to stick any needles into him. We put the bag of lipids etc on the counter to warm up and after it warmed, we had to add six components to it. One of them required we break a glass vile and then draw the vitamins out with a filtering needle (in case glass got in it. at least that doesn't scare a mom to death!!) and then putting it into a regular needle to inject into the bag. One of them had to be kept in the dark. One of them this and one of them that. It was a production. But we did it. We hooked up the IV to the pump, did the flushes etc, got it going for the night and kissed him good night. He would sit up in bed every morning and we'd ask him if he 'ate' and he'd say "All froo!" and point to the little flattened bag on his night stand. Soo cute. Of course this required me to get up about once an hour through the night and change his diaper since well... all that liquid's gotta go somewhere. To say I was exhausted during that time would be putting it mildly.
By his birthday, things were beginning to settle down. It seems if I remember correctly, he was beginning to eat a little bit and we were seeing the light at the end of the tunnel as far as the TPN situation. We couldn't have a party since he was on social isolation, which means we couldn't have company because of germs. And he couldn't go anywhere.. because of germs. Soo... I remember making dinner and then we had cake. I bought a little "4" candle for it. It was very exciting. We didn't know if he'd make it to "4". Some of the kids we were in transplant with died before they got out or shortly thereafter. (I still have his "4" candle. I think a part of me knew I would want to keep it, no matter what his outcome.)
But we made it out. And we celebrated! I remember sitting at the table blessing dinner and just crying because we had made it 'this far' and he was feeling good and we hoped 'all of this was behind us'. (I think back on some of those thoughts and I know I still had a touch of naivete left in me at that point...or maybe it was HOPE.) But I was so overwhelmed at God's faithfulness and provision thus far. It was a sweet birthday.
We found out about two weeks later after they did a BMA (bone marrow aspirate) that his marrow was indeed still diseased. We don't know if he relapsed very quickly or was never 'clean'. It didn't matter. It was over. We ceased treatment. He would feel and act normally for another six months or so. In mid September we had 'the talk' with the doctors and he was feeling well enough by then that the doctors told us to "go and do". They offered us a wish, but we declined. He wasn't much of a 'go-er' and was happiest being at home and just doing his normal stuff, so that's what we did!
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