Where do I even start. We were in Philly Feb. 8-11 for Jamisons EUA and round 4 of chemo. I guess I'll start with the good news. His tumors are still responding to chemo, he's still doing really well and hasn't thrown them a curve ball. Wills Eye, however, threw us one. Normally his appointments are 7:15ish. When we landed, we checked our voicemail and his appointment wasn't scheduled until 9:45. I was upset to hear the time and called them, they changed it to 9. Well, we got up there around 8:30 and they didn't take him back until 1:50. He hadn't eaten anything since 3:30am and was basically screaming from 9:30 until they took him back. They actually tried to get us to leave th pre-op area but I told them if we had to listen to him scream then they could listen to him scream. I had done everything I could to pacify him and all he wanted to do was nurse. In getting started so late, he actually didn't get out of there until 3:30pm. We headed over to CHOP knowing he wouldn't be able to start chemo in the day hospital. I actually asked to have him admitted because if they didn't start chemo Wed, they would move it to Thursday and Friday and then I would have to take him to the clinic down here for a shot every day for 10 days. When they start it on Wed, they do Wed, Thurs, and he gets a 10 in 1 shot there on Friday. They agreed to admit him and they started his chemo at 11 that night. Since he has been having a difficult time lately, Dr. Leahey, his oncologist, Jeff and I decided to keep him on morphine and zofran around the clock through today. It's so hard to know if he's in pain, we can tell when he's not feeling well, but the pain part is just difficult. He only vomited two days, so I guess that is a good thing. He had a CBC yesterday, too close to chemo for actually decline in numbers, but everything was fine. His hemoglobin was a little low and his platelets are not where I would like them for the weeks to come, but we'll see what they're doing next Monday.
We were fortunate to see our new friends Lisa and Evan, their son Jacob is 11 months and has bilateral RB as well. He is a month ahead of Jamison in his chemo, so next month will be his last month of chemo. And we met some new friends, Danielle and Tim whose son Brendan is almost a year post chemo with unilateral RB. As much as we hate to know people go through this, it's comforting to have others going through this near us.
As miserable as the trip was, there was good news and we're just going to hold onto that.
When we got home, Cole was clingy as usual, Jeff or I will take him to play therapy again tomorrow. Today Jeff had to go into work late because Cole woke up at 5 and wanted his daddy. We're hoping to be able to take him with us once Jamison's chemo is over since we'll still have multiple visits to Philly ahead of us.
Please continue to pray for them. They're tough little boys, but they are just little boys.
No comments:
Post a Comment