brycebelt.net Blog

Wonderful News!!

Okay so I have been a slacker and haven’t updated in forever but I have some wonderful news to share. Bryce’s wish was granted through the wonderful Make a Wish organization and we are going to Disney!! Our dates have been set and we will be celebrating Blake and Bryce’s 4th birthday at Disney. We are so excited that his was approved and that he gets to go for his birthday. We are so excited!! So we will be leaving on July 4th and will be back on the 10th.

Other good news is that Bryce is doing Great!! We have been so fortunate to have such a strong little soldier and he is winning this battle. He is amazing in all that he endures. He had clinic and omo yesterday. At clinic he got the usual… A finger poke, a check up, and Vincristine through his port, then it was off to OMO where he got his lumbar puncture with intrathecal methotrexate (chemo injected into his spine). Everything went smoothly and we were out of there by 12:30 which is great for an OMO day.

He is also on his 5 day cycle of steroids, so for the next few days it will be the hungry angry Bryce:) But we are all used to it, even Blake. Last time he was on steroids I told Blake, Bryce is starting his steroids you know what that means don’t you? He said yeah he’s gonna be mean… LOL

We are also going to be doing the Leukemia Lymphoma walk again this year. We had an absolute blast year and I hope that we will be doing it for many years to come. The boys still talk about it all the time and they can’t wait either. It will be on October 3rd this year and we would love to have a huge turnout like we did last year. We raised $4628.92 last year and we hope to beat that this year.

If you would like to join our team or our interested in donating you can join here or contact me at tntbelt@hotmail.com

Join the Bryce Belt Brigade

Also anyone have any ideas for fundraising or wanting to handle a fundraiser for the team we would love your help!!

September 26th was his last appointment and his ANC was 7000. She was extremely happy with it and bumped up one of his chemo pills (6MP). He now takes an additional 1/2 of a pill on Sunday. He had been complaining of his legs hurting quite a bit and she believed it was from the vincrisitine. She said to watch him with this round and see how he does. He also began the 5 days of steroids. He did really well on the steroids this round and just ate a little more but wasn’t too grumpy on them. I was told to take him in 2 weeks to our local hospital to have his counts checked with the addition of the 1/2 pill to see how he was tolerating it.

October 4th.
Was Light the Night and we were very happy with our team turnout. Bryce Belt Brigade raised $4,628.92 and had 43 walkers!! We were so thrilled and lot of our team drove 3+ hours to be there. It was an amazing event and the kids had a wonderful time. We can’t wait to participate in the event again next year.

October 10th
It had been two weeks and so I took Bryce to have his counts done at the local hospital. While I was there I had them to check Brandon’s finger to see if the nail needed to be drilled. He smashed his finger in the van door on Tuesday morning and it was swollen and dark. They came in with an instrument that burned a hole in the middle of his nail and the smell was horrible! But it did the trick and by the time we were home his nail wasn’t black anymore. All the blood was gone from under the nail.

Okay back to Bryce, so we had finally left the hospital and I started to make a call and as it was ringing my voicemail popped up. So I hung up checked my voicemail and it was Frances from the clinic saying she needed to speak with me it was important Bryce’s counts were low and she was leavin in a couple of minutes. I call the line back leave another message and wait anxiously forever. It felt like forever it was probably only 5 minutes but I was worried. She calls and said his ANC was 580 how has he been. I told her he seems fine my husband and I have been sick but he hasn’t acted sick or anything. She said that maybe he was fighting off an infection just haven’t seen anything yet or maybe its from bumping up his chemo. So we are cutting his chemo doses in 1/2 until we find something out. She said if had been under 500 we would have had to stop it all together.

Well here it is Monday and he still acts fine, It’s great he doesn’t seem to be sick but then why are his counts low. I don’t think 1/2 pill is going to bring his ANC from 7000 to 580. So now we wait and worry until Thursday when I am to take him back for his counts again. Keep him in your thoughts that everything is good when we go!!

Maintenance has begun!!

We are so excited to have made this milestone in his treatment. When he was first diagnosed the day was so far away, yet it seems to have flown by. He has done so well and only has had one week delay in his treatment. We were so excited that we have two new additions to our family Baxter and Bailey. The boys have been begging for dogs and since we only have to visit the docs once every 4 weeks now, we went for it.

We will be walking on October 4th for the Leukemia Lymphoma Society’s Light the Night. Our team is Bryce Belt Brigade and we have 34 walkers and over $2300 so far!! It is our first year doing anything like this so we are extremely pleased. You can still join us in our walk or help by donating to our team. Every dollar counts!!

http://teams.lightthenight.org/BryceBeltBrigade

So much to update

He wasn’t able to have his big chemo day on the 22nd as scheduled. On the 21st we had his cbc done at the local hospital and his ANC was 480. It has to be at least 750. On Monday he also broke out with a really strange rash and we were told to watch it and give him benadryl. If not better bring him in. He still had it on Wednesday so we took him on in. They said it was hives/mystery rash.

On the 28th we had another CBC done at our local hospital and his ANC was 900 so the big chemo day was a go for the 29th.

29th was a LONG day, we went over to clinic and they accessed his port and started his IV fluids. He had to have 2 hours of fluids before his cytoxan. So we had to go over to OMO wheeling an IV. Once over to OMO we got right in but had to wait on his chemo being delivered for quite some time. He had over 3 hours of fluids and then they gave him his ARA-C chemo push through his port, then Dr. Ahuja came in and and did his LP with Methotrexate, and then the one hour drip of Cytoxan, then an additonal 3 hours of fluids. Bryce tolerated everthing well and only slept the last hour we were there. He was sent home with his port accessed because he is to get additonal ARA-C at home on Wed, Thurs, Friday.We were able to leave at around 4:45.

When we got home and he got undressed we noticed a horrible red rash on him. Not the same as the week before but his chest, neck, one cheek, and his entire back were red. It was red like a sunburn but a little raised and swollen. They had put this itchy wrap around his chest to help protect his line and help keep it from dangling so that he wouldn’t mess with it. I took it off and checked the side effects of his meds and the Ara-C could cause rash. So I called the hospital and talked to Dr. Ayaanar and she said to give him Benadryl that it sounded like an ARA-C rash and to bring him in on Wed morning.

On Wednesday the rash was pretty much gone so I called clinic and they said to not come in, as I suspected, they wasn’t anything to look at. So she said to hold the benadryl and see if it came back after he got his Ara-C with the home health nurse. It didn’t thankfully!

It was nice having the home health nurse come out instead of dragging him into Louisville everyday. That was so nice to just have them pop in for a few minutes and then he was all done. On Friday Kelly his home health nurse asked if I would be interested in giving him his meds through his port. I said sure and she said she had cleared it with Bryce’s docs and if I was comfortable with it she would show me how and next week I could just give him his meds and wouldn’t have to wait around all day for them to do it. Sounded good to me!! So I gave him his meds Friday and she de-accessed him. So the game plan for next week will be Tuesday appt at the clinic to have his port accessed again for the week and a dose of Ara-C. Wed and Thursday I will give him his meds at home, Friday I will give his meds but the home health nurse will be out to draw his blood and to de-access his port.

Also he has been taking a new chemo pill through all of this called 6TG. He takes it by MOUTH!!! He has no trouble at all, takes him just a second and he is always so proud and opens his mouth really big to show me it’s gone and gives me a big high five. I must admit, I am proud too!!

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.

Birthday Party!!!

Since Bryce was starting the dreaded Delayed Intensification phase we decided to have his Birthday a week early. We were afraid of him being down and not being able to enjoy it. Their actual birthday is July 6th so we had it yesterday.

We were worried about the rain all week but it held off and turned out be a beautiful but WINDY day. Most of their presents were outdoor stuff so we just had a everything setup for them and they got to swim and play all day. They had water balloon fights and slip and slide too!

They had so many presents it was ridiculous!!

They got:
a swingset
bicycles
scooters
2 pools one was a shark and sprayed water out of the head
sandbox
helmets, kneepads
championship belts
sea monkeys
coloring books
water guns
candy
money
movies
and a Van full of pretty girls!!! (Bryce goes to the ball park and flirts with the pretty girls so Michelle brought him a van full of pretty girls for his Birthday!!)

I think it turned out great and the boys loved it!! Last night they kept talking about all their presents and everybody who was there!! I really think they enjoyed playing with everyone more than their presents. Okay maybe they enjoyed playing with everyone with their presents

After the party cousin Kaine went home. He had spent a little over 2 weeks with us. We enjoyed having him. He kept the boys entertained the past few weeks. He is really good with them and they loved having him here. In all the excitement yesterday, I don’t think they realized when he left. They were asking for him later, they wanted to know where Kaine had went. I hope he can come stay again sometime soon!

Here are some pics:
More on Bryce’s Myspace page at www.myspace.com/brycebelt

Day 1 and Day 4 of Delayed Intensification

Sorry for the LATE updates… But last weeks appointments went well. Tuesday June 24th was Day 1 of his Delayed Intensification (http://brycebelt.net/delayedintensification.html). Tuesday we had the whole crew except for Blake. TJ and I, Ashley, Brandon, and cousin Kaine. Ashley, Brandon, and Kaine have not been to any of his appointments so they got to see what goes on.
He had Vincristine through his port, Zofram through his port for nausea, Doxorubicin drip through his port over about 30 minutes, and a prescription for his dexamethosone (steroids). We opted for the liquid this time which was a HUGE mistake. He never cries and comes willingly to the kitchen for medicine time. I even had it flavored for him and he HATES it. We will go back to crushing pills for him after this one.

We were told that he would be having a home health nurse coming out this month to give him chemo. He has two weeks in a row where he gets it four days. The first day he will have his port accessed and his chemo given at clinic and then he will be sent home with his port still accessed. The next 3 days the home health nurse will come out and give him his chemo. He will also have an all day chemo which will last 8-10 hours. We were told that he most likely will need blood/platelet transfusion towards the end. He has been lucky thus far not to lose much hair, but most likely he will be losing his hair this round.

When we were done there we went over to OMO for his spinal tap with chemo. It all went well and he had a visit from Michelle (Ashley’s boyfriend’s mom) and Christy (ashley’s boyfriend’s sister). He was happy to see Michelle and really hopped up when he got to see his pretty girl Christy. Michelle was on the 7th floor too with her daughter Nicki, she had just had surgery on her ankles. We stopped by to visit Nicki real quick while daddy went and got him McDonald’s. He seemed a little tired but not too bad after all the chemo on Tuesday.

Blake and I went with Bryce to his appointment on Friday. We went over to clinic and his ANC was 3600. He had been constipated so were given a prescription for a laxative for him to take. Then we were off to OMO for the PEG Asparaginase shots. These are deep tissue muscle shots, one in each leg. We got to OMO around 10:30 and he didn’t receive his shots until 12:30 and he had to wait another hour before he could go home. He did pretty well with these shots. He cried because he didn’t want them and cried for just a minute after. He met a little friend at OMO too. His name was Keeton and he was a cute little 5 year old that also had ALL.

Tuesday July 1st is his next appointment and he will have another dose of Vincristine and the Doxorubicin drip.

We have 50 of his Buddy Bears tagged and ready to go over to clinic JULY 1st!!

Our Friday the 13th appt!!!

Friday was our day 39 of Interim Maintenance. Wasn’t too bad as far as the procedures, he had his finger “poked” and they checked him over. His ANC was 1200 which is pretty good!! I don’t think I posted his last ANC but it was 4500 last time which is one of his highest. We got there at 9:30 and we didn’t get out until 12:00. It seemed like forever with two 2 year olds bouncing off the walls in a tiny room for 2 hours!! LOL We saw a resident first and he asked lots of questions on how he was doing. He asked about the brusing on his legs and asked if there was any more on him. I told him that it was mostly on his legs and he said it was fine and then pointed at Blakes legs and kinda laughed and said it’s just a boy thing. They are all boy and play hard. Bryce has not slowed down too much at all from all this. He plays just as hard as Blake and is more energetic than he has ever been.

After we saw the resident, we got to see Dr Ayaanar!! We haven’t seen her in a while. We saw her a lot probably the first two months. When he was in the hospital and then after at the clinic appts. She is really nice and was happy to see him. He didn’t really talk that much because he was getting cranky but she made a comment about how much more outgoing he was and how much hair he still has. He was SOOOO shy and backwards in the hospital. She was happy to hear that he hadn’t had any setbacks and was doing so well. She did tell us to be prepared for the next phase, he could likely be back in the hospital.

On June 24th he will start the dreaded Delayed intensification. On the 24th he will be accessed at the clinic and given Vincristine and a new chemo Doxorubucin through his port. I have read a little on the Doxorubucin and it’s nickname is the Red Devil. It’s nickname is because its red in color and it’s effects are pretty rough. He will also start the steroids again and will go over to OMO to have his spinal tap with methotrexate. This will be on a Tuesday and then Friday he should get his PEG Asparaginase shots. These are inserted in to his legs muscles and will probably make him pretty sore.

Then that weekend we will be having their BIRTHDAY PARTY!! We are doing it the weekend before their birthday just in case he’s not feeling well or his counts get too low. We bought them a playset for the backyard and we wanted him to have some time to enjoy it just in case he gets down. So it will give him an extra week of FUN! TJ put it up and Blake has already spotted it when we pulled up to the house one day… so we are considering just letting them go ahead and play on it. There is a big fireworks show and festivities at a local church on his birthday though if he’s feeling well we are going to take them to that.

We had their birthday pics made and they turned out pretty good. At least they weren’t screaming, crying, and terrified!! We haven’t had them made since their last birthday so we were happy with all the smiles!!

Bryce

Bryce on the left