Saturday, November 8, 2008

The latest on Coleman

Coleman had scans Thursday and Friday. Bless his little heart. Coleman has been through just so very much. He had an MRI Thursday, Then another one Friday. I'd like to copy exactly what Peggy wrote because written several times over it gets watered down.

We were at the hospital by 9:30 [Fri] for Coleman’s MRI. We didn’t have much of a wait, but it was a long MRI- it took well over an hour. Coleman usually falls asleep, so this isn’t a problem, but he wasn’t feeling too sleepy yesterday morning. I went back with him this time, and when it was over, they brought him out of the machine and he had tears running down the sides of his face. The tech said he was going to make her cry…I asked him what was wrong and he said, “I fink I moved a witta bit!” “I fought I was in twubble.”
Can you imagine that little fellow feeling he was in trouble because he moved a " 'witta bit' ?" Who among you has ever had an MRI? He is just about 5 years old.
After the scan, they told us they had paged the doctor to come talk to us, so we could have a seat and wait. That didn’t sound promising, and of course we were worried- but after over an hour of sitting and waiting, they called us back to the doctor’s office with the boys. I didn’t think it could be TOO bad, because they surely wouldn’t let the boys come back with us, if it was bad news.

*sigh* I was wrong. The news was not what we were hoping for…the cancer has spread quite a bit in the last month again. The doctor was surprised Coleman hadn’t been complaining more. I couldn’t believe they were telling us all of this right in front of the boys! For one, I wanted to ask a whole lot more questions, but I wasn’t going to do it in front of them, AND we needed to put a smile on for them, which was so hard to do when our hearts were breaking. Since chemo is no longer an option, and neither is the 3f8, They gave us an option of starting an oral pill- it’s a study that just opened last week and one other patient is starting it right now. It’s not chemo, and right now I can’t even remember what she called it- I was in too much of a daze, but Coleman will need to keep his platelets above 100,000 to be on the study. They were at 37,000 yesterday. Soooo, we were shuffled out of the meeting with the dr. over to the infusion room where we waited for an hour to get platelets…which by the way took a half hour to infuse!(our bright spot of the day!!!)

They are hilarious…and between Coleman’s story of an “odoe-wess sunk” (odorless skunk) and Caden telling us his jokes, we had many laughs. I told someone I kind of felt like we were on the deck of the Titanic, the band was playing, and we were smiling and dancing while we’re desperately searching and hoping for a life boat. We couldn’t break down with the boys we danced. And continue to THANK GOD for every single moment we have together. We truly ARE so blessed. It was a tough day to sit through and we didn’t get back to the RMD house until 6:00 last night.
There is not one mother among us who can say "I understand," for even mothers who have walked this road or similar road, we each have our own way of reacting emotionally.

Peggy goes on to say,
So Monday will be a full day- we’re going to have a friend watch the boys in the toy room at the hospital while we visit with the doctor and go over our options. I have a list of questions all ready…so we should have more to report after that. We were not able to look at scans, since they were still writing up the reports, and with the boys there, I didn’t want to push it. I will be getting a copy of them on Monday.

After Monday we should have a better idea of when that will be, I think they want us to stay out here to be on the study. I’m going to try to negotiate it so we can go home and maybe find a dr in Des Moines who would be willing to work with Sloan? (something we're praying for) Coleman keeps asking when we get to go home...

For right now, things are up in the air…but our feet are firmly planted in our faith. We’re still praying our hearts out, and trusting that God hears, and is carrying us every step, as He always has.

Then a perfect ending. When asked if he would like to attend the bubble show they were signed up for last night, Caden's eyes sparkled and he said YES! Then he looked over at Coleman, and said, "no... I fink I will stay here and pway my v-smile." What a brother.

"it’s a study that just opened last week and one other patient is starting it right now. It’s not chemo, and right now I can’t even remember what she called it- I was in too much of a daze,"

Hang in there you guys!
We're with you all the way!

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