I (Mom), went back to work this past Monday for the first time since 3/25/09! It was great to get back to work, too! However, getting back to work has kind of slowed down my updates on Chase's carepage - sorry :)
I'll give you some of the highlights. Chase over the past couple of days has had some issues with nosebleeds. He has always been prone to them, but they've never lasted long, and have never bled very much. Well, since his platelets are low, his nosebleeds are more frequent and last quite a bit longer.
While David was with him, he had two nosebleeds. His RBC (red blood cell) count was also low, which can cause him to not be very energetic. He has been rather lethargic and now wanting to do a lot of activity. He received both platelets and 2 blood transfusions. By the time I arrived yesterday evening, he was much more energetic than the previous day!!
While I was at work, David emailed a few status updates for him:
At first, they thought there were going to have to give chase more chemo in his spinal fluid. His chemo regimen doesn't affect any potential Leukemia cells in his spinal fluid, which means they have to treat that fluid directly - no fun! Well, we received WONDERFUL news!!! Chase has NO Leukemia cells present in his spinal fluid!! Praise God!!!! To say that we are blessed by this news is a HUGE understatement!! Now, does this mean his spinal fluid will always remain clear? That I can't answer for now, but we are all so very pleased for this stupendous news!!
Chase, from what I'm still hearing has TWO types of Leukemia: AML, which he was first diagnosed with, and CML. There are fewer pediatric cases of this occurring than you can count on your hand!! Good continued news is that he is still looking great and responding extremely well to treatment!
Onto today...
Another nosebleed!! This one took a while to go away, so they gave him another dose of platelets. Right afterward, his bandaged area above his central line began to itch him like crazy. His nurse, Rebecca (the one he has squirted), was told she could remove the tape. With my help and taking probably more than 30 minutes, we slowly and painstakingly removed all of that awful tape. I hope they never have to use that junk again because Chase hates it and it appears to be very painful to remove, even slowly and with these little pads that help to dissolve the adhesive.
Let me rewind a bit. I told Chase that Rebecca would be back today, and when she came in to do his vitals at dark-thirty, he grabbed his loaded syringe. From his accounting, they had a little tug-of-war over the syringe before he finally got off a shot.
Back to his update...
After getting both the tape off and changing that bandage over his central line (another 10 minutes), he was taken OFF his IV fluid!! Woo-hooo!! During the day, as long as he is drinking regularly, I don't think they're going to make him stay one it!!
He got a quick bath and by the time he was out his two physical therapists were in here to get him out of bed. They had a Nerf soccer ball with them and wanted him to kick it around. I followed down the hallway a few minutes later to see him RUNNING - yes, RUNNING and kicking the ball. He picked it up a few times and threatened to play dodge ball with it. I can't say how great it was to see him running around like that!! He was full of energy and ready to leave his room for a while.
Unfortunately, his stomach began to hurt as a result of the different constipation meds they have had him on. He came back into the room and fell asleep for over an hour. They've since removed that from his orders, much to his pleasure as he told me that he wasn't going to take any of that stuff anymore.
Once he woke up, we ordered a meal ticket for him and we went downstairs for a walk. I showed him the gift shop and tried to get him to buy these crazy looking PJ bottoms that were long since his legs have been getting cold, but he wouldn't go for them. I did get him a hooded zipper jacket though so he could wear a short-sleeved shirt and layer with the jacket if he wants.
After our purchase, we went to the cafeteria and he picked out a an IBC Black Cherry soda, a container of thinly sliced apples with caramel, and a deli sandwich. He's eaten almost all of the apples by himself, the entire IBC soda, and some of the chips that I was eating. He's saving the sandwich for later.
Yeah, I forgot. He "stole" 1/2 of my peanut butter and jelly sandwich earlier today. He told me that he didn't think he was hungry, but I would say that he scarfed his half. He also drank a smoothie and some chocolate milk.
It's wonderful to see him eating, too! He's eaten and drank more today than I would say he has in the past few days put together!
We still don't have a day pinned down when he might come home. They're watching his levels and most likely won't be able to give us a time frame until late next week. And he's talking about going ahead and shaving his head. He was going to do it today, but decided not to. Once he shaves it, I'll post a pic.
Thank you again for your continued prayers and thoughts for Chase and our family! He's doing so very well and I attribute that to the wonderful staff here at Egleston, but mostly to the prayers that I know are being sent our way.
Thank you!!!
The O'Bannon Family
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