On Friday, April 15th I got a call from an Oncologist about Tyler's biopsy results. The cancer is coming back, despite the chemo. Since I have his Caringbridge site, I'll spare the medical details on the blog. Since finding out, we made a plan to start treatment on Monday, April 25th. I did all the laundry, packed our bags and was ready to go before he even called with the official plans. I had prepared to head in the same day if needed. So since then we've been living out of the suitcases. We're going to Easter at my Grandma's house, handing Dawson over to my parents and heading to the cities to check into the hotel from there. They couldn't get us into the Ronald McDonald house, so we have to stay at a hotel 3 1/2 miles away until it opens up. Hopefully either that or the Sheraton by the hospital will open up quickly.
Kids pick up on stress so easily. Tyler has been very clingy and cuddly. Dawson has been getting into things and throwing more tantrums. Thankfully things were much better today, so I hope things continue to be better for him. I'm sure he'll love being at Grandma's house too, so he'll have that nice distraction from things.
On Thursday we're supposed to be picking up Dawson and bringing him to the hospital to be with us. We're hoping to get all the major meetings with Drs and the transplant team over with before then, since we both have to be there and it would be very hard to focus with him there. We are looking at having my cousin come stay with us to help out with the kids, mostly Dawson. I think it would be good for him to get out of the room more than he did last time.
Tyler has been doing great with his cast, he's putting a little more weight on it now. He takes a few steps while holding onto furniture and he'll stand without holding onto anything. He's been completely off pain meds all week and it doesn't seem to be bothering him at all.
Dawson ate carrots! Only once, the next time he just smooshed them into a million little pieces, but at least I got him to eat them once. He does better when he doesn't feel obligated to eat something, so I just set the bowl out in the living room and he dove right in!
I can't help but wonder if he'll lose his hair. Last time he hardly had any to begin with, so it wasn't that noticable, until I looked back at pics and realized that he did look pretty bald. He's starting with spinal chemo, which often affects hair loss faster than the regular chemo does.
Gabriel sleeping peacefully. He's still such a nice content little guy. I still can't believe he was a 100% match for Tyler. We really couldn't have had better timing with having him either!
Tyler has been more tired lately, taking naps and just being calmer. I'm wondering if it's starting to show up in his blood now. The other day he got a little cut and took longer than normal to stop bleeding. His whole hand was covered in blood before it stopped. His color looks good though, so it's kind of puzzling. Some days he's more active and other days he isn't, so maybe it's just a fluke thing. I haven't seen anything worth getting seen for yet though.
He brought Dawson's monkey harness to me, wanting to wear it. He crawled around with that thing on his back all afternoon and eventually fell asleep with it. Maybe he was just feeling down and needed a buddy?
We're all very anxious to start down this road again. We were so happy to only have 2 months left of treatment, so starting over just seems so overwhelming. It was hard enough the first time, but this time he'll be a toddler, wanting to be active and having to be hooked to an IV pole the whole time, possibly a bladder catheter too, making him even more stuck. Thank goodness he likes movies and Children's has a whole closet of them. I also bought him a new toy, which the boys have been all over, but I haven't taken it out of the box yet. I got a couple new things for the hospital for them to play with. Hopefully it will help pass some time.
I'm not sure how often I'll be able to blog, Children's doesn't allow the website to be accessed at the hospital, but the hotel and Ronald McDonald house probably does, so I'll see what I can do. I do want to keep you up with Dawson and Gabriel's life during all this too!