brycebelt.net Blog

Day 29 Interim Maintenance

When we got to clinic everything seemed to be going well. I annoyed the doctor asking a million questions and Bryce told me to stop talking.. LOL The doctor got a good chuckle out of that one. But I did find out that his treatment plan for next phase will not be changing. He is scheduled to begin that one on June 24th. He started back on the dexamethosone (steroids) today for 5 days also.

So we head to the back where they access his port to give him his vincristine and I ask Bryce do you want me to sit with you or are you going to do it by yourself. He opts to do it by himself, hops in the chair and calmly waits. She sticks him and he SCREAMS. He has not screamed like that EVER when he is being accessed. She tries to flush the line and it doesn’t flush. I am freaking out and am saying what’s going on this isn’t like him to scream. She removes it and does it again. He SCREAMS again and again the line is not flushing!! I am nauseaus at this point and thinking that there is something wrong with his port and my heart is breaking because he is in pain. She finally calls someone over and she said you are on the side of it. The woman she called over removes it and puts it in again, he screams again but the line does flush. So I guess she was just sticking a 3/4 inch needle into his chest, which really upsets me. He goes through enough and tolerates everything unbelievably well. He shouldn’t been in pain needlessly. You can feel his port easily, it sticks out far. It seems like it would be hard to miss!! Okay so he gets his vincristine (chemo) and then over to the hospital for his LP with Methotrexate (more chemo). As we were leaving he says the nurses are nice and waving by to everyone and is happy as can be. I think maybe I was more upset than he was. At least I hope, he has to be accessed A LOT over the next few months and I hope he is ok with it still.

Okay so we get over to the 7th floor and register for OMO. They say its full and that we are going over to the other side. The other side is 7 west which is where he stayed when he was first diagnosed. So we were familiar with the area and even though we were in the back the rooms were still pretty roomy. They had him a crib set up and he always uses a bed but we made it fun and he acted like he was an animal at the zoo. He also took the gown they had on the bed and was dropping it out and would “reel” it back in like he was fishing.

They come in and put him to sleep and start the procedure. When he’s “asleep” he’s eyes are still open, his eyes usually bounce around but he’s still and calm. They are doing the procedure and a tear runs down his face. That has never happened before, I wipe the tear from his face and talk to him. Then he lifts his head and another tear runs down his face. Breaks my heart and I HOPE that he didn’t feel anything, but I think he may have felt it. They give an amnesiac so he won’t remember it if he did, but still. I guess after the port access, it was just a lot for one day.

After his procedure he is to lay flat on his back for at least 30 minutes, preferably an hour. It was 25-30 minutes and he said he needed to potty. I didn’t put a pull up on him this time, as he has never needed it so far. The recovery nurse hits the call button to ask for a urinal and we wait a few minutes but nobody responds. We are back in the old rooms so were not even sure they are working. He is still complaining he needs to go and I had a pull up with me so I go ahead and change him out just in case he can’t wait. He continues to complain and really needs to go so after a lot of convincing that it is okay to go in his pull up he finally goes. I clean him up and put his other clothes back on. Several minutes later they respond to the call light and ask if everything is ok. I said yeah we are now. It had to be at least 10 minutes!! But I guess they were super busy, the board when we came through looked pretty full.

All day everyone was saying he was the best patient ever, and the nurse who came in to de-access his port asked if he liked superman. Bryce said yes and she said I think I’m going to call you superman. I thought that was cute because I call him my superman too. That’s why I did his myspace page in superman.

So we are finally done for the day and Bryce is asleep within minutes of getting in the van. I stopped at McDonald’s close to our house and he woke up hungry. We got home around 2:00. Wasn’t one of our better days but he’s home, he’s okay, and that day is behind us now.

At the clinic

My little monkey in the zoo

Laying flat after his procedure

Memorial Weekend 08

He had a fun filled weekend before his treatment on Tuesday. On Saturday he went to the zoo and had so much fun. He walked the entire time other than the tram and train rides we took. He was a little wore out when we stopped for lunch but after a mini corn dog basket, fries, and HI-C he was ready and charging out front saying let’s go see some more animals! He has been afraid of snakes since he watched Snakes on a Plane. Can’t say I blame him since I was scared of them before At one of the buildings they had an iguana and a snake out for you to pet. Bryce went right up to both of them and pet them. Blake didn’t and I didn’t think he was scared. You just never know with those two!

Bryce riding on the carousel

Bryce in the front and Blake in the back

On Sunday we went to cousin Kaine’s 9th birthday party at the lake. It was about a 2.5 hour drive. When we first got there Bryce was fishing for probably an hour or more. He was really enjoying it and reeling the line in. While Bryce was fishing Blake was enjoying playing with his new cousin Laynee who is 4.5 months old. He was talking to her and had her cooing and laughing at him. Later they had water gun fights and of course cake!! They had a fun filled day and despite spraying them 3 times with sunscreen they both were a little sunburn.

Bryce fishing

Happy Birthday Kaine
Blake on Left Bryce on Right

Bryce, Kaine, Destin, Blake

Then Monday they spent most of the day with Ashley and her boyfriend Daniel. They took them to McDonald’s for breakfast, then to the park, Wal-Mart for some toys, and then back to McDonald’s for lunch and playing in the play area. They were wore out and ready for their nap when they got home around 3. Thanks Ashley and Daniel

Letter about his treatment plan

Not sure how this is going to affect him or his treatment yet, but we recieved this letter today from clinic. His next treatment phase is delayed intensification. He did use dexamethosone for the first 28 days of his induction phase.

Click this link to view the letter…
Treatment Letter

Not too much too report…

Hubby already thanked everyone for the walk, but I wanted to say thank you to all as well. It was so great to see all the yellow shirts!! Bryce, Blake, and I were unable to attend because we weren’t feeling so great. Angie took lots of pics that I am uploading to Bryce’s myspace at http://www.myspace.com/brycebelt.

Today he had to go to our local hospital to get bloodwork done. First time he’s had anything done in two weeks!! It was so great to only have to have a 30 minute round trip instead of 2+ hours. We had no appointment, we just went when we got ready and it only took about 30 minutes! He had a crowd watching him get his finger “poked”. They couldn’t believe how good he was and how he just sat there calmly. He is usually pretty bashful and shy, but he is really warming up to people and I think he is loving all the attention he is getting. He was chatting it up with everyone today and answering all the questions, even if they were talking to me.
The clinic called me with his counts and his ANC is 1063, which is great. They had said depending on his counts they may have to make adjustments to his new chemo med (methotrexate). So his counts are all good and no adjustments needed.

His next appointment is in two weeks and it will be an OMO day. He will go over to clinic for his check-up, have his port accessed, be given his Vincrisitine (chemo) through his port, and then over to OMO for his spinal chemo (methotrexate). So it will be a busy day but at least we got a little break.

Also just wanted to add that we are thinking of Ryan Stinnett, he in Kosair’s and has just found out that he is diabetic. We are wishing him well!!!

5/10/08

just wanted to drop in quick and let everyone know that the walk went great and thanks to everyone that pledged and came out to walk , Bryce is a little under the weather and couldnt be there, but it was great to see all the support from family & the community….. a special thanks goes to the brandenburg moose lodge, who put the walk together well gotta run

4/29/08 Updates

He has had a wonderful fun filled weekend. He went to the park and Baskin Robbins on Saturday and went to Kart Kountry on Sunday. He actually has had a wonderful week or two with the great weather. We have taken them to the park several times and they have been to the ballpark several times with Ashley. He will have to cool it for a while now though because of the weather.

His counts were still good today!! They were 1900, so he was able to start his new phase of treatment. He had to have two “pokes” today. She just couldn’t get enough out of the one and had to do another finger. He didn’t mind at all. He just admired his two garfield bandaids and was able to get two toys out becuase of the two “pokes”. He picked one for him and gave Blake the other one.

His port was accessed and then he was given Vincristine (chemo) through it and then it was de-accessed. Daddy was at his appointment so he got to sit on Daddy’s lap for all of that. He was brave as always and didn’t cry for any of it. He even gave me a big smile and a wink while they were giving him his Vincristine.

He starts new meds this week which seem a little confusing. Here is a rundown of his meds now:

Bactrim 5ML (liquid) Monday thru Wed 2x daily
6MP (pill) Monday thru Saturday 1x daily
Methotrexate (pill form) Thursdays 1x but he takes 4.5 pills
Rantidine 2ML (liquid) 2x daily while he is on the dexamethosone
Dexamethosone (pill) 2x daily for 5 days He gets 1.5 tabs in the morn and two at night and he will only get one dose in tonight so he will actually end in on Sunday morning

I am so worried by this confusing schedule I am going to miss something. I completely forgot his Bactrim yesterday morning and didn’t remember until last night. I asked the Nurse practioner today and she said that I could make it up by giving him a dose on Thursday morning. I hate that I missed it, but she said if that’s all you have missed you are doing good. I am glad that’s all I have missed but it really bugs me that I did. At least it was something that could easily be made up.

Also since he will be on the dexamethosone again I have to check his blood pressure daily at home. The first time he was on it his blood pressure was extremely high and took several medicine and dosage changes before they could get it controlled. So if his blood pressure is higher than 100 over 70, I have to call.

The good news is that he doesn’t have to go back to clinic for a MONTH!! We do have to go in two weeks though to our local hospital to check his blood counts. But it’s only 15 minutes away versus an hour away. When we go it will be an OMO day. He will have to go over to the hospital to have a spinal tap that day. I think it’s scheduled for May 27th. So other than the home meds, the next few weeks should be great for him.

April 23rd 2008

Today’s appointment was a breeze compared to OMO days. He just went in weighed, had his height measured, “poked” his finger, saw the nurse practioner and then we were out of there. It is such a beautiful day we had lunch at the park and they got to play before coming home. They played hard and when we got home they were ready for their naps. It’s not often they say they are tired and ready for a nap.

His counts are still good, his ANC is 2200. He starts the next phase of chemo next week as long as his ANC is above 750.His next phase of chemo is called Interim Maintenance. It will be 50 days long and it looks like there will only be one OMO day unless blood or platelets are needed.

Here is a rundown of his schedule: Day 1 will be April 29th or 30th

Vincristine (chemo given through his port) Day 1
Dexamethasone (steroid by mouth) Days 1-5 and 29-33
Mercaptopurine (chemo pill by mouth) Days 1-50 (he is currently on this one)
Methotrexate (chemo pill by mouth) Days 1, 8, 15, 22, 29, 36, 43, 50
Methotrexate (chemo by spinal tap) Day 29 ( This will be our OMO day)
And he will continue on his Bactrim Mon, Tues, Wed (twice daily)

Blake’s appointment went well last week and his blood counts were right where they needed to be. Such a sigh of relief even though that’s where we expected them to be. He was behind on his immunizations so he had one shot and he is good until he is 4.

Blake weighed 32 lbs 1oz and was 37.5 inches tall.
Bryce weighed today at 14.2 KG (31.3 lbs) and was 34 3/4 inches tall.
Nope it’s not a typo… Blake is nearly 3 inches taller!

Going to put some pics up of them at the park today on Bryce’s myspace page. It’s www.myspace.com/brycebelt

Taking it easy for a few weeks….

This is his fourth week in a row to have to go over to OMO (outpatient medical observation). OMO is in Kosairs and where he has to go for procedures like his Lumbar puntcure, bone marrow, and blood or platelet transfusions. The first one was bone marrow and LP with chemo and the last three were the LP with chemo. All of the bone marrow and LP’s he is sedated for. His is given ketamine and versed, one of which is an amnesiac so he doesn’t remember the procedure. After his procedure I always sit on the bed with him and talk to him. Both last week and this week as soon as I started talking he gave me a big ole cheesy grin. The ones like I am taking his picture. Today he was so calm before the procedure that when the doctor came in he asked the anesthesiologist if he had already given him something, we all laughed and he said not yet. He couldn’t believe how calm he was. He is always a little bashful and doesn’t talk much, but today I noticed he was talking more to everyone and more comfortable with all the doctors, nurses, and staff. They didn’t tell me his ANC at the office just that it was still good and his blood counts all look great.

His next appointment is Wednesday and it will just be at the clinic to check his blood counts. There will no procedures or chemo other than the chemo pill he takes at home for the next two weeks.

Blake has his appointment this Thursday and has to have immunizations and he is having his bloodwork checked. He is actually excited about getting his finger “poked”. He will be happy to have a day at the doctor to talk about.

On May 10th the Brandenburg Moose Lodge will be having a walk-a-thon for Bryce and another little boy who is two with leukemia at Buttermilk Falls in Brandenburg. If you are local and would like to walk or if you can’t walk and would like to help obtain pledges for the walk email me at tntbelt@hotmail.com for pledge sheets. Everyone’s help is much appreciated.

Good news and a few pictures…

The News Standard has been absolutely awesome to our family!! They held a yardsale on Friday and Saturday with all of the donations going to Bryce. Friday was a little chilly and rainy and still all of the wonderful people in the community came out and more than tripled their goal for our family.

Bryce’s Yardsale Sign

Bryce’s Yardsale

Bryce inside the Yardsale

Also all the wonderful people that my mom works with also put together a March Madness bracket with donations going to Bryce.We are so very thankful for all that you have done for our family.

It was amazing that so many people pulled together for someone they didn’t even know. TJ’s income is our sole income and he has missed a lot of work and is not working overtime like he did before. It means a lot to our family that with all of our worries that we have right now, that the financial stress is not overwhelming us.

And some more good news!!! Bryce’s ANC was 6000 today!! Two weeks ago it was 2100 then last week it was 800 and we thought it was dropping and I had him in a mask all week when we left and was terribly worried that it was really low. I was so surprised to see his counts this high. Definately the best that I have seen them since he has been diagnosed. He did really well with his procedure today. He had the LP with chemo and he is just becoming an old pro at this stuff. He has another LP with chemo next Tuesday and then we are done with the LP’s for a few months.

Waiting on his LP

After his LP

If you are wondering what in the world I am so excited about with the ANC and don’t know what an ANC is this is for you…

Absolute neutrophil count: The real number of white blood cells (WBCs) that are neutrophils. The absolute neutrophil count is commonly called the ANC.

The ANC is not measured directly. It is derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature) neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1.5 to 8.0 (1,500 to 8,000/mm3).

Sample calculation of the ANC:
WBC count: 6,000 cells/mm3 of blood
Segs: 30% of the WBCs
Bands: 3% of the WBCs
Neutrophils (segs + bands): 33% of the WBCs
ANC: 33% X 6,000 = 2,000/mm3
ANC of 2,000/mm3, by convention = 2.0
Normal range: 1.5 to 8.0 (1,500 to 8,000/mm3)
Interpretation: Normal

Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.

In practical clinical terms, a normal ANC is 1.5 or higher; a “safe” ANC is 500-1500; a low ANC is less than 500. A safe ANC means that the patient’s activities do not need to be restricted (on the basis of the ANC).

friday april 4

bryce went to a yardsale today that the newsstandard put on for him , and he had alot of fun we would like to thank everyone that took part in the yardsale we really appreciate it thanks to all who have donated