The Brands: Bravery Beads

Thursday, August 5, 2010

Bravery Beads

In his post, Caleb refers to Bravery Beads. I've wanted to share about them for some time, and now here's my chance!

The Child Life specialists, with Help a Child Smile, offer a Bravery Bead program for kids going through cancer treatment. For each significant event in their journey, children with cancer receive a special bead that marks the event. The bead string can be worn as a necklace or draped over IV trees; I'm sure that other kids have come up with more creative ways of displaying their bravery. Many kids on the ward have strings that loop round and round, silently declaring their fighting spirit. And some of those kids are younger than my son.

The beads on Caleb's string give his name and his diagnosis date. The lightning bolt in the middle is for an emergency room trip; we have another one of those to add! The Maple leaf is for our hospital stay over Canada day, and the yin-yang is because he had a one-to-one nurse in the ICU. One of my favourite beads is the steroids bead, because it is all mixed up faces, smiley, frowning, sad. This bead helped me to understand how Caleb was feeling when he was taking prednisone 3X a day. This program really shone for us when we were in emerg on Monday, when through tears after they drew blood, Caleb sniffed, "Mommy, we need a new bead now." He got his bead, actually two beads.

Ask him to show you his bead string sometime, we try to carry it with us. It helps all of us to share his story with him. We got a new bead this morning, for a finger poke at the clinic. Caleb's counts are looking good, and his neutraphils, the infection fighters, are great! This means continued freedom for the Brand kids for now. Thank God for that!

Since Monday, things have been steadily improving. We were able to get out to Puddicombe Farms in Winona on Tuesday, and to St. Catharines for a swim at a friends' pool on Wednesday. The pool trip was a highlight for all of us, as cousins Emily and Sophia swam with Caleb in the deep end for much of the afternoon! Great exercise and even better memories. We pray that this will last for a while longer. We are on the tail end of this phase of treatment, Consolidation I. In a week and a half we'll be into the next phase of treatment which will involve more frequent trips to Mac. I don't know what that all entails; I have it written down so I can look at it later.

One day at a time. (Also phrased, "Strength for today, bright hope for tomorrow" and "do not worry about tomorrow.") One day at a time!

2 comments:

anya genevieve said...: I have heard about these bravery beads before and was wondering if Caleb was getting them too. I think its just such an amazing tribute to be able to truly express in a total visual/sensory capacity the enourmous bravery and fight that all these kids with cancer have inside them. Also a way to mark time, to make the bad stuff (finger pokes & other procedures, the chemo and steroids along with all of their side effects, etc) and give if a positive side that the child is able to show, without needing words, and to be able to feel and see and show others - and to keep on fighting. Its almost impossible to comprehend the enormous strength and courage, the truest form of bravery needed to fight and heal from cancer and i'm just so glad that bravery beads exist, with meaning in every single bead, and a visible sign to the world just what these kids are really going through.; August 6, 2010 at 9:35 AM
Michael F said...: Glad to see the little man is fighting through everything!
Bravery Beads are a really amazing idea, i can only imagine how positive an impact they have on someone going through this kind of trauma.; August 6, 2010 at 2:45 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.