The Brands: Week 1

Thursday, October 21, 2010

Week 1

Week 1 is "steroids week." Caleb had a lumbar puncture for chemo in his spinal fluid on Tuesday, and they gave him all of his other chemo on Tuesday as well. This is a change in routine that happens every 9 weeks (if I remember right). Normally he has his chemo divided over 2 days. Yesterday it was obvious to me that his body was hard at work recuperating from the meds. He would alternately play and lay on the couch, and he slept for several hours in the afternoon. He is emotional, alternating from tired and happy, to tired and unhappy, to excited and jumping around. He doesn't get angry often, just weepy. He is not very interested in eating, but out of the grace that I've been given, I've had patience to try multiple types of food to get him to eat. His picture is of the pancakes that we ended up having for supper. A good dutch thing to do, I think. He's happy to help make them.

Caleb is on steroids this week, which I'm expecting to kick in soon. Steroids are such a mixed bag. I want them to kick in so that his body can rally a bit more and gain strength for chemo. I'm concerned about the side effects of steroids this week, because it was so difficult for him last time. This week we've added a new drug to help control the pain that steroids can cause, rather than popping him some tylenol every four hours. It tastes awful, but mixed with gingerale, Caleb says it tastes good. It was my child enjoying a glass of pop at 7:30 yesterday morning. We live by new rules in our house.

We ask for your prayers and thoughts as we go through this week. It's not easy, and we're tired. We know it's not all bad, and even as he is worn out from chemo and worried about his body, and I am too, he still plays and enjoys the things he loves. The John Deere video (thanks Cousin Cori) occupied him for a long time yesterday.

Please pray that he'll feel better as he wakes up this morning. Thanks for your support to us.

5 comments:

d said...: Hey, I hope the days go fast until Sunday, to escape this steroid strife. Not fun. I wish I lived closer to visit and distract the kids. Hope the headphones work for the next couple of days for Caleb, and I hope you can get out for a run soon. spot; October 21, 2010 at 1:12 PM
anya genevieve said...: hey, hang in there all of you. your in my prayers and in so many other's as well. my friend Monica ran her marathon in San Fransisco this past Sunday for the Leukemia & Lymphoma Society and did amazing, both with the running and raising funds - she ran for Caleb as well as her loved ones affected by blood cancers. I really hope the steroid week goes as best as it can and Caleb can fight off this nasty disease. Just made me think of the story of the Little Train That Could! Remember, up up up the mountain it went and even when that little train felt he could go no further he kept going and going - resliancy and strength and hope and love. anya xoxo; October 21, 2010 at 1:47 PM
Kim said...: Hugs to you all and prayers from Hunter Street. You are truly an amazing family :); October 21, 2010 at 3:06 PM
Anonymous said...: Pancakes for supper sounds yummy. I will pray for continued patience and minimal side effects.
Brenda in St. Catharines; October 21, 2010 at 6:41 PM
Anonymous said...: hello dear ones - we read your blog everyday and continue to pray for you guys and Caleb. Thanks for your stories, your honesty, and updates. Hoping that you know and feel that you are thought of often and prayed for continually - Michelle DeBoer; October 23, 2010 at 9:01 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.