The Brands: A little more stability

Sunday, June 27, 2010

A little more stability

We have moved from the PICU! We were able to move this afternoon, unfortunately right when King Caleb was taking a nap :). When he leaves his room he has to wear a mask because his defences are so low, and this was a big deal for him. I think he's also a little worried each time he leaves his room, because each time he's left it's to go for some invasive procedure that involves him going to sleep. This time, it was to our cozy (?) shared room in the pediatric oncology ward. His neighbour is not here, she is on a leave of absence. Patients may have a leave of absence if things are stable; it's an opportunity to go home/have a break from the hospital. for a day, or possibly more. Our weekend doctor just came in and told us that because we live in Hamilton, we may be able to do the same thing sometimes. This is both exciting and intimidating. I'm not ready to take my IV toting son home yet! (if he came home, he wouldn't be hooked up, don't worry!) For now, we'll enjoy this short time of stability.

Funny from Caleb today--his weekend doctor's name is Uma, and I told him so. "Hi Oma Doctor!" he called. This is the nicest thing he's said to any of his care providers since Thursday.

Thanks for your prayers,
J

4 comments:

Rileysowner said...: Yeah, and thanks to God he is out of PICU. May strength levels increase with the sleep he had.; June 27, 2010 at 4:32 PM
SteveF said...: We are thankful to hear that Caleb is out of the PICU! We continue to keep Caleb and all of you in our prayers. We also hope that you all will get the sleep and strength that you need.; June 27, 2010 at 5:04 PM
Unknown said...: So glad to hear Caleb is out of the PICU. Our family is praying for yours. May strength be with you all.; June 27, 2010 at 10:46 PM
Chris and Juanita Draaistra said...: Just heard the news Jess. We will hold you guys up in our prayers.; June 28, 2010 at 1:55 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.