brycebelt.net Blog

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

Tuesday April 1st appt

We got his treatment plan and he is in the Standard Risk-Low Acute Lymphoblastic Leukemia group. There were two choices within that group that he could have possibly got. His treatment was randomized by a computer into which group he would get. The only difference in the two were that one had extra doses of PEG Asparaginase (the leg muscle chemo injections). He got the one without the extra doses. So we were happy that he didn’t get that treatment and that he is in the lower group.

So on Tuesday it was the first day of his Consolidation Therapy and he got Vincristine (chemo through his port), Methotrexate (chemo by spinal tap), and a prescription for Mercaptopurine (chemo pills). He is to continue on his Bactrim and they took him off his blood pressure medicine. It looks like this phase will last 28 days and then he will move onto Interim Maintenance which is 50 days.

He has done very well with Tuesdays treatment and has not been sick at all and hasn’t slowed him down a bit. He is a tough one and he is not letting this get him down at all. He was amazing at his appointment and such a big boy. We left home at 7:30 that morning and didn’t get home until 4:30 that afternoon and he wasn’t even able to eat or drink until around 2:00 pm that day and never complained.

Bryce’s next appointment is next Tuesday where he will have another LP.

On the downside we were asked if we had been getting Blake tested for Leukemia and we told her no. We had asked several doctors and all of them said no unless he was showing any signs or symptons. We were told that since he was a fraternal twin they were not concerned. But Dr. Ayanaar told us on Tuesday that she recommended him having a CBC every 3 months because he was a twin. So we have scheduled him an appointment and he will have bloodwork done on April 17th.