Rash

Jamison had a horrible night last night.  He just wouldn't sleep, woke up crying every 30 minutes or so.  He was constantly smacking, kicking, head butting us.  Cole was the only one who slept nicely.  Needless to say we were all a little grouchy today.  I guess Cole was feeding off of our bad moods because he wasn't a happy boy either.  After we got home from a horrible grocery shopping trip I saw Jamison's tummy had a rash all over it.  I called the clinic, emailed pictures and the return call was to say just keep an eye on him and bring him to clinic tomorrow.  We had plans to go tomorrow for a CBC anyway, so it's not a big deal.  I didn't really think that they would want me to bring him in and I didn't really want to take him to the ER.  The doctor was insisting it looked like bug bites, but it's not, there are no puncture marks, it's an allergic reaction to something.  This is how his rashes all start.  I stepped away for a few minutes this evening and came home to bathed and pj-ed little boys.  Jeff said his rash was looking better.  The good camera had a dead battery (of course!) so these were the pictures I was able to get.  Not the best, but when you have a screaming baby because he wants to go outside you go with what you can get. :)  

CHOP getting round 4 chemo, Feb 9-10, 2011

This is what Jeff and Jamison spent a good portion of Thursday doing.

His eyes are swollen from his EUA and he has his little horns, that blue marker does not like to come off.

All hooked up for chemo.

I assume throwing some sort of tantrum because we weren't allowed to leave the room. 

Time to leave this place!

Moving on to round 5

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.

Hello Nerves

How has it already been 4 weeks?  Those weeks fly by and crawl by at the same time.  We're headed back to Philly soon, hoping and praying for great results from last month.  I can't believe it's already time for round 4.  There isn't really anything to update, just that my nerves and anxiety are back.  I have to meet my parents tomorrow to drop Coley Bear off and that always makes me sad.  He doesn't want us to leave, when I have talked to him about it this time his responses make me sad.  I asked him if he wanted to go play at Grandma's, he said, "No, leave Grandma at home.  No Grandpa.  Coley see Mommy."  So I try to explain that Jamison needs his chemo and we have to take him so he can get it, "Coley get chemo, too."  I hate leaving my sweet big boy.

Keep Jamison in your thoughts this week, please.  He'll be going through a lot as he always does, and we certainly appreciate the prayers.

Please think about my four year old niece, Haylen, tomorrow, too.  She broke two bones in her wrist at school on Thursday and is going for a cast tomorrow.  She's really scared.  Thanks!