By Margot | August 30, 2006
Surgery went smoothly yesterday and Sammy popped up with a smile on his face this morning and was playing light sabers with his brother by 9am. I think the anticipation of getting it put in was harder on him. He cried the whole way to the hospital saying he didn’t want another line in his chest. I tried to explain to him that this wouldn’t be like his Hickman and that he can swim with it and do all the things he normally does. It’s not like the comforting things you can say to kids when they don’t want to go school like, “Oh you’re going to love it. You’ll meet so many new friends, etc. etc.” Sam rallied when we got there though. His uncle bought him Heelies as a belated birthday present and when we got the parking lot it had a perfect downward slope so I pulled Sam along the parking lot, and all through the hospital until we got to surgery on his new heelies. He said in a very cheered up voice, “Hey hospital floors are perfect for heelies.” Andy was in tears when we left yesterday too and kept saying he wanted come with us – poor guy. But Elizabeth (thank you, Elizabeth) had him cheered up in no time and he took a good afternoon nap while we were in surgery. He’s been such a trooper through everything. He’s downstairs with his girlfriend Rianna painting her face with imaginary paint.
Charlie is blissfully eating and sleeping his way through things. He is starting to be awake for much longer periods of time and likes to spend his time staring at windows and lights. He puts his little mouth into a perfect O of amazement when he sees the window as if he can’t believe how much light is actually coming through there. He is a sweet sweet guy – not much crying going on. Sammy always kisses the top of his little head as he’s going out to play or if I’m holding him in the kitchen, he has me bend down so he can give him a kiss. It kills me. Andy calls him “Charlie poop baby” but is still a very enthusiastic big brother and likes to give him lots of kisses too. He helped me give him a bath a couple of days ago. It was a funny scene. I think Charlie is going to be one mellow guy – not a lot will phase him after his big brothers. Neil and I spent a date night in the emergency room of Children’s hospital on Saturday night with Charlie, while the amazing Lisa B watched the boys. Neil was watching him out at the pool while Sammy was swimming and picked him up in the car seat and he wasn’t buckled in. He tumbled out onto the concrete on his head. He was just a little scraped up but the pediatricians don’t mess around with newborns because their heads are like melons. Thus, we found ourselves in the ER making sure Charlie was ok. We joked about it actually (only because I could see he was alert and eating and not throwing up). Now he can say when people ask him if he was dropped on his head as a baby, “yes actually I was.” As Neil was dropping the boys off, before he came back to wait with me, I was sitting waiting the second hour of our four hour wait to see the doctor in a dark room (the nurse thought it might help Charlie sleep) while Charlie was sucking furiously away on my finger because he couldn’t eat anything until the doctor saw him. My matstitis was killing me and I started to feel very sorry for myself. I laughed because I felt like signing, “Nobody knows the troubles I’ve seen.” and I thought the nurses would get a good story out of the crazy lady in room 12. Anyway, all turned out fine and the boys had a ball with the Bonebrake boys and Neil and I actually got some quality time alone with Charlie (ha ha).
We get the results of bone marrow biopsy, CTs and urine tests from Tuesday today. After the bone marrow, I asked Sammy if it hurt at all and if he wanted some Motrin and he said, “Oh it hurts some every time but not enough for medicine.” It made me wonder what his criteria for medicine is. As long as we qualify, Neil will take Sammy up to LA tonight to stay in a hotel and be there with him for tomorrow. His port is still accessed, they accessed it in surgery, so he won’t have to go through that tomorrow. He’ll just have to sit around for blood draws every hour. I’ll stay here with Andy and Charlie. We are going to do weekly urine tests on Fenretinide so as to keep a close eye on it. The last thing we want to have happen is for the disease to take over and get out of hand if it doesn’t work.
Next week is the first week of school for Sammy. We find out who his teacher is on Friday when they post the class lists. I’ll try to post when we get the test results later today. We’re hoping for still no disease in the bone marrow, clear CTs and not sky high VMA and HVA.