They arrived back in New York this week for another round of scans on his brain ... and I'm just going to take the liberty of cutting and pasting her whole update here for those who haven't signed up to get the updates. You will see what an AMAZING family they are. If you are interested or can spare it, there is a site that is accepting donations that go 100% to the family. The family appreciates cards/gifts for the kids as it lifts them up each week when they get the packages. The kids love getting pictures of other families and kids .... so if you can spare some time......
I’m sorry for no update last night…we had another long day. Truthfully, I started to type one several times and just never seemed to get it finished. I felt bad when I went to bed that I hadn’t updated, but I knew you’d all understand. I know a lot of you were wondering about our scan results.
We were at the hospital by 9:30 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.”
Broke my heart. He has no idea how completely amazing he is for being able to lay in that machine, and that still, for that amount of time, at his age. He’s done it so many times without anesthesia, we just take it for granted how amazing it truly is. The techs are always in awe over him…and so are we…he moved a little bit- ha!…….there is NO way I could have laid still for that long.
This picture, breaks my heart. This is one I would keep next to my bed forever.
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!!!)
I shouldn’t say that, we had a lot of bright spots as usual with these two boys. 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 there...so 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.
We also met with two neurologists yesterday who ordered an E.E.G. for Monday. This will measure the waves of the brain and possibly tell us about the shakiness we’re seeing, and the slurred speech he’s had a couple of times. They don’t want to put him on any anti-seizure meds until they see the E.E.G. The symptoms could be seizure related, or disease related, but this test should tell us more.
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.
We just got back from going out for lunch and got SOAKING wet! All of us except Coleman who was in his stroller with the rain guard covering him. We only walked about 5 blocks, but it looks like we just stepped out of the shower with our clothes on! Caden LOVED the rain and was holding his mouth open the entire way. He can’t wait to catch snowflakes on his tongue when we get back to Iowa! :)
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.
Thank you for the messages of support, for your prayers, and kindness. It truly means so much to us. Please know how VERY much we appreciate our carepage family!
Blessings to you all,
A dancing Team Larson
p.s. a BIG thanks to Aaron Horn, Eli's dad (cp: EliRHorn) who offered to take Caden to the bubble show we were signed up for last night. He thought that way Caden wouldn't have to sit through the platelet transfusion. I asked Caden if he wanted to go, his 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.
Thanks for the offer though Aaron. Hope you and Eli had safe travels back to Iowa this morning! Say hi to the snowflakes for us.
If you want to send Coleman or his family a card, or small gift ...Here's his address in NY City at the Ronald McDonald House. On your return address label (since they don't forward mail) put the families address in Iowa, and when the package gets rejected in NY, it will be automatically returned to "sender" which will be: Team Larson Box 251 Callender, Iowa 50523 (Tricky!) Please, cards, pictures of other kids and families, pets----anything cheer him up.
You can also make a monetary donation through http://www.dmarkette.com/donate-to-colemans-prayer/ .... Darryl has written a song for Coleman (beautiful) and there is a spot to make a donation to the family. All proceeds (100%) go to Peggy and Scott Larson.
This sweet Coleman needs more prayers than ever now. If you have a blog or a website or a way to get the word out.....please ...pass this link along so the message gets out. I don't know this little boy personally, yet, I feel like it could be my kid at any minute that something like this happens to - and that scares the crap out of me. This is the strongest family I've ever come across and I hope that someday I get to meet them.