The Brands: ...and we're home again

Thursday, July 15, 2010

...and we're home again

This morning Caleb worked with Reg, a hospital volunteer, building a mini-foose ball set (this gave me a break too!)

We are trying to be creative with how we spend our time so we can have more time together. Here we are having a picnic meal in Caleb's room. It was really so much fun.

We arrived home this afternoon at 2. So good to be home. Once things stabilized for Caleb it was hard to still be there, waiting. I'm glad we were there, because should he have spiked another fever, they could deal with it immediately. They really do take such good care of us.

It's been so up and down this week. It was hard to go to the hospital on Monday, but it was good to get good care. Caleb's fever really did go up quite high before disappearing. We're so glad it went away with treatment. The bone marrow procedure and lumbar puncture on Tuesday were nerve-wracking for Caleb; he was so afraid to "go to sleep" again. I don't blame him: the last time he was put to sleep this way he woke up in PCCU. I'm so glad that things have gone smoothly. Hearing about no blasts has been so fantastic, the overall picture looks good. It was still hard to be in the hospital for still another day when he was feeling and responding so well. The whole experience is so emotionally up and down and mixed all around, it's hard to know which end is up. I suppose I'd sum much of it up by saying that hospital stays are vital, but they are hard for a family to handle. It's the dividedness of the family that is the kicker.

But we've made it home again. Caleb sleeps in his own bed, and I do too! The kids can play together, although they need to learn how to do that again after having time apart. Caleb's moodiness is really hard on our sensitive Nella, but we're getting through, and look forward to a time when he won't be on steroids anymore.

Keep him in your prayers, and all of us. Please continue to pray for no fevers, and that the chemo continues to be as effective as it has been. I cannot thank everyone enough for the support you continue to show to us. Thank you, because it really keeps us going.

Have a good night,

2 comments:

Unknown said...: Jess, you seem drained today. Praying for God's super amazing strength to pour through you as you sleep tonight. Same with Tim and the kids. Hang in there! You are in our thoughts and prayers.; July 16, 2010 at 12:08 AM
Chris Schoon said...: Continuing to pray for your whole family. May God multiply the effect of your sleep and continue to give you the strength you need from day to day.; July 18, 2010 at 9:34 PM

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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.