The Brands: What we've been up to

Wednesday, May 11, 2011

What we've been up to

We've been working in our garden. Last year, just before Caleb was hospitalized, we attempted a roof-top garden to maximize the use of space in our small yard. We used pots that we set along the edge of our garage roof. I wouldn't say that our garden did well last year, but we don't really know if that was because of inattention or because it's just a bad idea. So, we're trying it again! This year we've built a frame for an actual bed that we can access by a ladder to the roof. We'll see how it goes! (For those of you worried about our kids' safety, the ladder we have isn't small enough for our kids to use)

Amidst the rain, we've had some gorgeous blue-sky days. The kids are waiting for what they call "warm-spring" instead of cold spring. Me too.

Playing outside. Our girls are bound and determined to be princesses, which happens anytime they wear a dress or skirt. Sound familiar to anyone?

We had a few issues at the hospital for clinic last week, Caleb had a lumbar puncture scheduled for the same day as Grandparent's day at school. We hoped and prayed that we'd make it on time from the hospital to the school. Caleb's port was giving us trouble, not bleeding back the way it should. "Bleeding back" is when the nurse pulls the syringe and it should fill with blood taken from Caleb's bloodstream. Not bleeding back can happen for all kinds of reasons, but for Caleb, not bleeding back used to mean that he had a clot. It was a little scary to re-visit the idea of tests to find a clot, starting blood thinners, etc... and finding out what might cause a clot. So much goes through my mind when things don't go quite the way we want them too. With prayer and a lot of work from our nurses, we got his port to bleed back, finally, and he made it for the last bit of Grandparents day. We received good news that night on the phone from our doctor, his bone marrow continues to be free from blasts, praise God. They'll continue to test his bone marrow every nine weeks for the next year and a bit.

This week Caleb's port bled back without any problem at all. We may not know what caused the problem in the first place, and hopefully it doesn't return. One day at a time.

2 comments:

d said...: Good to see that dress being enjoyed - wonder if Hailee B recognizes it?

The times we've had trouble with no bleeding back has been when the nurse didn't push deep enough into the port. I hate that feeling too - even though I haven't experienced the blood clot saga you have.

Love the garden. I am sure you will be more successful than we, but we are going to try to resurrect our little piece of dirt too.

spot; May 11, 2011 at 9:18 PM
anya genevieve said...: wow! what a change to teh garden from the night i was there a few weeks ago with the kids - its amazing what some sun can do (like get rid of MUD!!) and sooo great to see the pics of the kids helping out and the girls being the beautiful princesses that that they always are. And seeing pics of Caleb helping with the gardening cant help but remind me of 2 summers ago when Caleb informed me it was soil, not dirt that him and Tim were going to get with the trailer - just so good to see Caleb back to his self you know?? My prayers are with you every day and every night and i'm so happy to hear about the postive results from the lumbar puncture and that the port is bleeding back like it should. Here's to a new spring, one of healing and health, of dirt and soil, of rooftop gardens, ladders and trampolines... of princesses and princes.... xoxoxo anya; May 12, 2011 at 12:35 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.