The Brands: Consolidation II

Tuesday, September 7, 2010

Consolidation II

"We had a long day, Mommy. I'm tired." Caleb managed to get a tired smile in for a picture with Tucker before bed tonight. At clinic they have a wall for pictures of kids with their pets. We're adding ours tomorrow.

Here's my list of meds that Caleb's doing right now,written on our kitchen chalkboard to help me remember. It could be longer, so we must count our blessings. 6 MP begins tonight for 2 weeks. Septra has been on-going and will continue until 6 months past treatment completion. Carwash is our word for the mouthwashes that Caleb does each day. He's becoming a good spitter. Dex is the steroid that Caleb takes beginning today for 5 days. Meds can change based on how a child's body responds, and new meds can be added if side effect control needs to be increased.

Caleb was exhausted after today. How many drugs can a child take? He had his leg needle, which was painful today. Although Caleb said it didn't hurt as much as being stung by a bee. Aunt Rhoda was stung by a bee today. She came to make us smile and give us sunchips at lunch time. Caleb also had chemo, Vincristine, through his port. He'll get another chemo drug tomorrow, Methotrexate. Please pray for his little body, that he can sustain this new plan. It's not as harsh as he's received in the past, but new drugs have new side effects. He's also received these ones before, but not in this combination. He's been a little nauseous, not overwhelmingly so, but it's not nice. We pray that he'll not be nauseous, and that I can find food he'll be able to eat lots of so he keeps his weight steady. We're tired, but I do believe that after the first day of a new routine (like school), we're all pretty tired.

In his hands,

5 comments:

Anonymous said...: Thanks for the update, Jess. It is very helpful to know what stage of treatment Caleb is in...it helps to pray specifically!; September 7, 2010 at 9:45 PM
Anonymous said...: We tried Cheerios after the nauseating chemo, and Raisin Bran after the constipating one (and when she got them both at the same time it got interesting!) I'm so sorry Jess. It's such a long haul and noone should have to go through this. We're praying for you all.
~Elly; September 7, 2010 at 9:59 PM
anya genevieve said...: hey there, good to hear you guys are hanging in there and that you had a good time camping despite the weather (i'm actually happy with this cooler weather although the rain is debateable)... know that so many people out here are praying for Caleb's healing and strength for both him and your family during his treatment. He is so special; God holds him in His arms and is always there. when reading the above comments on food Brinta came to mind ~for the non-Dutch its a Dutch wheat cereal that you add milk and other things to; sorta like a non-baby pablum... love, prayers & hugs to you, Tim, Caleb and the girls. anya; September 8, 2010 at 2:27 PM
anya genevieve said...: me again :) the other day i looked at the bookmark i'd been using for months and realized it had "Footprints" written on the back. i thought to share it on here instead of through e-mail as its words of God's love and comfort can never be heard enough.

FOOTPRINTS
One night a man dreamed he was walking along the beach with the Lord. As scenes of his life flahsed before him, he noticed there were two sets of footprints in the sand. He also noticed at his saddest, lowest times there was one set of footprints. This bothered the man and he asked the Lord, "Did you not promise that if I gave my heart to you that you'd be with me all the way? Then, why is there only one set of footprints during my most troublesome times?" The Lord replied, "My precious child, I love you and would never forsake you. During those times of trial and suffering when you see only one set of footprints, it was then that I carred you."; September 8, 2010 at 2:40 PM
Chris Schoon said...: Thinking of and praying for you all today. May God strengthen your bodies--especially yours Caleb, and may he give you all the rest you need to keep up this fight.; September 9, 2010 at 10:15 AM

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What is ALL?

Caleb has ALL, a form of leukemia. From what I understand (here's the dummy's guide to leukemia), leukemia means that something has gone wrong in blood cell production.

Blood is made up of 3 main parts, red blood cells, white blood cells, and platelets. The red blood cells do things like carry oxygen and nutrients through your body. The white blood cells fight infections and keep you healthy. The platelets glue it all together. (I did say this was the dummy's guide, remember.) Bone marrow is where these cells are made and released into the blood stream.

In Caleb's leukemia, his bone marrow is producing the 3 kinds of cells, but some of the white blood cells are being made wrong. These white blood cells are not maturing, they don't perform any function, and they aren't dying off. They take up space, and made it so that Caleb's red blood cells, functioning white cells, and platelets were having a hard time doing their jobs, and the production of the blasts was taking over. This is why before we were admitted to the hospital, Caleb was tired and pale. His blood just wasn't able to do what it should do.

Chemo treatments are designed to kill back the blasts. The only way to do this has a lot of extra damage (collateral damage) as well, which we see in side effects like hair loss and need for blood transfusions. Because chemo also knocks back regular blood cells, Caleb needs blood and platelet transfusions to replace what is being lost through treatment. White blood cells cannot be transfused, which is why he has nothing to fight off infections. We can't replace those ones. When the drugs are less intense and his body can gradually go back to doing what it should be doing, white blood cell production should return. We will have to be careful for a long time, though.

Hair loss occurs because cells that are replaced often in our body, like hair, can't keep up production. The cells die off faster than they are replaced. Other fast growing/often replaced cells are in our mouths and our nails. These are all affected.

I hope my dummy's guide to leukemia makes sense. It's the way I currently understand things. People in the health care profession may cringe at my descriptions, but hopefully it's accurate enough to explain what Caleb's going through. Maybe it will help you explain it to your kids. For now, we just say we're blasting blasts.

We are the Brands

We are three kids, two parents, and one dog. And too many fish. We love our city, time in the outdoors, playing soccer, camping, and making music. Our faith is central to our lives.

On June 23, pieces of what had previously been a concerning question about our son Caleb's health came together in a diagnosis of leukemia. It all happened rather quickly, after bringing him to the ER at McMaster hospital on Monday, June 21. We're absorbing this news, and trying to learn how to cope with leukemia and a young family. Our hearts are torn, but we feel the love of many.

This blog is intended to share with our loved ones and their loved ones what is happening for Caleb and the rest of us. I must say that it is possibly as much information-giving as it is therapeutic writing. Thank you for taking the time to share with us our experience. We find strength in numbers, and in shared experiences.