The Brands: Our week off

Friday, November 12, 2010

Our week off

We're adjusting to giving needles at home. This morning we had our first home care visit; a nurse came to give Caleb his needle. I wondered if I would appreciate this, because my strongly independent nature would prefer to do things on my own if I can. So far, one visit in, it's a great help. I like the reassurance of someone else coming in to make sure that what we're doing is okay. Giving my child a needle is not a comfortable experience, but I'm guessing that eventually it will seem quite normal. For now, I like having someone else to come and help us.

We had an extremely long day at the hospital yesterday, all 3 kids at clinic for what was intended to be a much shorter time. We were there all day! I was once again so thankful for my sister Rhoda who could slip away from work for a short time to hang out with my kids and give me relief. And give me cash so I could buy hotdogs for the kids when we had to skip our picnic lunch. We're working hard to preserve our children's childhood in and amongst hospital trips and medicine. Sometimes it's harder than others. I battled this in my own mind yesterday--my frustration with how long things take and having to abandon birthday picnic plans with friends versus a desire to help my kids be kids and not be as grumpy and frustrated as I feel. I'm not sure that sentence made sense, but hopefully it somehow conveys the idea that I want to learn to embrace our hospital time as a part of my kids' childhood as much as an outdoor picnic is. That means making the hospital fun. Fortunately, our clinic and McMaster Children's Hospital is trying to do the same thing. I'm so glad that they allow us to ride our tricycles and make lots of noise.

Today we are staying home. We've been building lego and making balloon animals (no, I don't know how, but Tim does), eating pancakes and dancing to music. Here's to making childhood the best we can for our kids.

4 comments:

Chris Schoon said...: You continue in our thoughts and prayers. May the Lord grant you extra strenght and peace as you feel the weariness of this stage in your journey. We will be praying for laughter and joy and more opportunities for your children to enjoy childhood together.
The grace and peace of Jesus Christ surround you and hold you close to the Father's heart.; November 13, 2010 at 10:21 AM
Michael and Brenda: said...: There is no instruction book to parenting i am finding out real quick. It is hard to hold in the feeling of being frustrated. Smile and breathe is what I was told. it is not easy and my face is wrinkling and about to crack.....:) cousin Brenda
p.s.Hope to see you at Dejonge Christmas; November 13, 2010 at 7:04 PM
anya genevieve said...: Jess, I just want you to know that I 110% believe and feel that you and Tim ARE giving your kids the best world, the best childhood possible while being faced with a child with a serious illness and multiple hospital visits and chemo and steriods and all that. I see the pictures of your camping trips, I read about the tricyles up to the clinic, the laughter and the fun, the picnics and the stories and play time and I just want you to know that if anything, I believe your kids will be all the stronger and better for all that's going on in your family's life. Not that Caleb's leukemia is anything to be wished for, but the strength, the courage, the empathy, the learning of how our world is and seeing how to deal with adversity while trusting God to be there for you all and to heal your precious little boy - well, i think things like these only make us better people. And the most important thing your kids need is love and that I Know they get in spades. love the pics, by the way. hugs and prayers, anya; November 14, 2010 at 8:02 PM
Williams Family Blog said...: Hi Jess and Tim,
We are continuing to hold your family in our prayers. Just wanted to encourage you as you both do life with your three kids in the midst of leukemia, needles and chemo. Quite a while ago Keegan was in the hospital over Christmas. It was my 30th bday and Calia's first Christmas. A time to be anywhere but there. We decided if we couldn't celebrate with family that day we would simply celebrate Christmas at the hospital. So we put up a tree, put blinky lights around the window, brought in some gifts. We had an amazing Christmas and for years afterwards if we asked Keegan about his best Christmas e he would say the Christmas at the hospital.
Crazy eh? So keep on letting Caleb ride his trike through the hospital, have those spontaneous picnics,carpe diem! Anyways, love to you all, be encouraged and keep the posts coming.; November 15, 2010 at 8:38 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.