brycebelt.net Blog

One more….

Ok.. I know I don’t write for weeks then you get 2 in one day!!

But if you would like to do something for Nick, Angie and Tom have a really thoughtful idea. Below is copied from Tanner’s caringbridge page at www.caringbridge.org/visit/tannervanberg

Losing his hair….

The inevitable has happened… he is losing his hair. We were told he could start losing his hair 7-10 days after his first chemo treatment which was at the end of February. We took him home In March and shaved his head. It grew back and he has been thinning over the last few days. Well today he fell asleep on daddy and when he woke his hair was all over daddy’s arm. I think Bryce was calm but I think daddy freaked just a little. So daddy shaved his head today and he is sporting a new look with his bald head and his chubby cheeks from the dexamethasone. Today’s the last day for the dex though thankfully. He’s been pretty hungry and not so active so he’s gained a little this time. He took his pills by mouth again this morning and without much trouble!! We will see how he does when he needs to take a bigger pill.

Daddy took him this morning to the local hospital today to get his counts and they are still good. His ANC was 1138 or so can’t remember exactly, his hemoglobin was 12.4 and his platelets were 99. So all good there. We have to take him back to the hospital again next Monday before his big day to make sure his ANC is at least 750. Next week is the home health nurse too (if counts are good).

He is so tired… He is up playing very little, and sleeping more. Yesterday he took two naps and he is laying around a whole lot. He is not sick and says he feels fine. He’s happy and laughing but he’s laying around a whole lot.

Well I guess that’s about it for today.. I will post a pic later of his new do, he is napping right now.

My heart is aching for Nick’s family right now. His momma has been so strong throughout his journey with him and has had to make tough decisions that no momma should ever have to make. His journey has hit home with us and I haven’t cried so much and so hard since I first found out Bryce was diagnosed. Nick will forever be in our hearts.

Nick you will be missed

Sorry it’s been a little while since I have updated so I will start with July 1st appointment.

July 1st

This day went well, this was his day 7 of steroids so his ANC was really good 6800. He got a Vincristine (chemo) push, Zofram push for nausea, and Doxorubicin drip that takes an hour. We also delivered 50 of our Buddy Bears to the clinic this day!! We left them with Pam the “finger poker”, so they can be used in their prize box.

July 6th
This was the boys’ birthday and we spent the entire day at Gloryland Harvest church. We had a booth setup to collect donations for the Light the Night walk in October. The way they had it setup it was away from the main traffic off by itself and we didn’t do as well as I had hoped. But we appreciate every dollar and everyone who stopped and heard Bryce’s story and we had several who wanted to walk with us to!! So we were pleased with being able to spread some awareness and to recruit some walkers!! The boys had a big day of riding rides, dancing, balloons, and face painting. They had a blast and didn’t even have a nap!! The fireworks were awesome and both of them did really well. (Last Year it was SCREAMING the entire time because they were scared of the loud noises) We had a wonderful day but long day. Our van was loaded down so Ashley took Blake and Brandon with her when we left. She had an accident on the way home but luckily everyone was fine. She doesn’t have a bumper on her car right now, but happy everyone was okay and nobody from either car was injured.

July 8th

His ANC was 800 and he started the steroids again for another 7 days. He had the same treatment as the week before; he got a Vincristine (chemo) push, Zofram push for nausea, and Doxorubicin drip that takes an hour. He doesn’t have any chemo for next week so we get to go to the local hospital and have his CBC done on either Monday or Tuesday. Then we are to go again on July 21st to our local hospital to get it checked before the BIG day. On the 22nd is his all day chemo and the week when the home health is to come out.
Blake and Bryce got to meet and play with Tanner, another little boy with ALL. We have read some about his story and had seen him a few times at clinic but never officially met. He’s a handsome little boy who is 3 and diagnosed a few months before Bryce.

Today….

Well I will probably take Bryce Monday for his CBC, just for my sanity. I am sure it’s fine especially since his on the dexamethosone (steroids). But he has really slowed down the last few days. I have not seen him this down and tired since the beginning. He’s still in good spirits and happy and sweet, but his is exhausted and you can see it in his eyes. He’s laying around more, not playing, and wants to be held.

Tonight I started crushing up his dexamethosone, one for tonight and the other for in the morning. I started wondering if he could just swallow them and I asked him if he wanted to try and he said yes. So we sat down and one right after another he swallowed them. He had to take 3. The first one took about 3 tries but the others went right down! I was kinda shocked that he did it so easily. It probably took less than a minute and he was so proud that he did it, and of course I was too. Those were small but I am hoping that he will be able to take all his meds that way.

On a sad note I have to mention Nick. He is a handsome young boy at Kosairs who has ALL and has been in the hospital for over 5 months battling this cancer. He has fought one heck of a fight but his body has given out. We have never officially met, but he has touched our hearts and have reading his story daily for a few months now.

In the midst of writing about Nick I checked his site and it reads

“AT 9:35 PM, NICK BECAME AN ANGEL…..HE IS NOW A MIRACLE IN HEAVEN”
My heart is breaking for this family… and that ends my journal entry for today.