The Brands: Squeezing the Juice

Friday, December 31, 2010

Squeezing the Juice

I talked with my Aunt Marie on the phone a few weeks ago about the importance of the weeks between steroid weeks. We try to enjoy every moment to it's fullest. Aunt Marie so aptly called it "squeezing the juice" out of each day.

Caleb had a lumbar puncture and a bone marrow aspiration yesterday--we usually refer to these as lp's and bone marrows, or "procedures". We're supposed to be at the hospital for around 8:30 for procedures, but we woke up at 8:15. Oh well. So it goes. We were last in line for procedures, but Dr. Barr has been doing these for 25 years and things went quickly and smoothly! We packed strawberries and sunchips (yes, Aunt Jaci, Caleb likes sunchips again. We never can tell what he'll like) for after procedure, and we were home again by 3. It always amazes me what can transpire in a few short hours. Sedation? Chemo drugs into your spinal fluid? Yep, that's done, now I'm going to go play with my John Deeres.

A few highlights from the past few weeks as we squeeze the juice:

Caleb's friend Kristin came with us to clinic. Nancy, our Child Life Specialist, set the kids up with medical play. Kristin had a great time delivering medicine to her doll! The two kids made many people smile that morning, holding hands as they walked through the halls.

Caleb and baby cousin Hart are playing trucks together. Hart is similarly taken in with tractors and trucks, although we think he may end up preferring red tractors to green ones. Only time will tell. Something to notice in this picture is Hart and Caleb's hair. It's the same length! Caleb's hair has actually grown quite a bit in the last few weeks. We get a lot of comments at clinic now about the red that is beginning to show through. Caleb's red hair used to be a distinct trade mark. His hair really began to grow the week that chemo was delayed, and it hasn't stopped! We'll see what happens as the weeks progress. Every child's body responds differently to the chemo drugs.

We enjoyed a short visit on Christmas eve from Dave and Jodi and their 3 kids. All 5 kids (not baby Julia) had a fun (loud) time jumping on the couch and playing together. Here Caleb and Aaron are jamming on their guitars.

We have had a special time with Shelley and her family. Swimming in the pool has been a real treat for me and the kids, and now that it is winter time, her family has built a backyard ice rink. And it turns out that Shelley's girls are great at teaching kids how to skate!

Aleah on her bob-skates

Nella and Caleb just got "new" skates.

And what is skating without hockey?

3 comments:

anya genevieve said...: Beautiful!! So glad you've all been able to 'squeeze the juice' - made me laugh to read that expression as i had just 'squeezed the tea bag', trying to get all the medicinal cough tea out of the teabag and into my mug!!
Love the pics of the kids skating especially; brings back lots of happy memories. I am praying that this year will be one true growth and healing - in every way for all of you and for the rest of us too. just read about the 4wk old baby girl in BC with rare form of leukemia. so sad, yet so many people and community resources and even a Boston Pizza doing all they can to help out the family and the older 4 siblings of this precious little baby girl named Molly. I pray that through this extremely difficult time that family is going through that more and more awareness, research, and understanding and support will be made readily available to ALL familys of children with leukemia and other cancers as well. Stay Strong and remember that God holds even the tiny sparrow in His hands and cloths the lillies of the fields... He is truly with us today and every day to come in this new year. my love and prayers (and hugs and kisses!) always anya xoxo; January 1, 2011 at 12:18 PM
Anonymous said...: Tante Willie wishes you all the best. You are in my daily prayers.; January 9, 2011 at 3:42 PM
Anonymous said...: HI,
Kristin still talks about her visit to the hospital with Caleb. Thanks for giving her the opportunity to spend some special time with Caleb! We look forward to seeing you all again soon.

Rachel; January 10, 2011 at 1:37 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.