The Brands: In praise of sisters...

Monday, August 29, 2011

In praise of sisters...

This is Nella Mae, one of the "SuperSibs" in our family. Aleah is the other SuperSib, but she doesn't really know it yet--she's a bit too young to understand the idea. SuperSibs is an organization that recognizes and celebrates the role of a cancer patient's siblings. Nella has endured, and continues to endure, quite a bit at the mercy of our family's situation. Nella has been dropped off at friend's houses without notice, puts up with an emotionally unpredictable brother, vies for any attention with her brother's need for medical attention, and deals with disappointment when her brother's health concerns trump our family's activities. Nella is truly a SuperSib. I cried when we got her trophy in the mail. Nella dances with her trophy, hugs her trophy, and sings about how she is a SuperSib. She truly is.

Nella recently experienced one of the best weeks of her life. I say that with "dark humour," please take this in the way it is intended. Nella truly did have a wonderful week, but the things that made it wonderful are not what might typically be called wonderful. It most definitely made me reflect on what is going on in my little SuperSib's heart and head.

Monday: Nella presents with hives at 11 in the morning. Dad makes a special trip with Nella and others in tow to visit Mom at work to investigate the hives and determine what to do next. Nella requires special medicine (Benadryl) and Mom and Dad pay close attention to her. Nella continues with hives throughout the day, becoming itchier each time the Benadryl wears off. Nella needs medicine three times. Nella talks extensively about how she needs special medicine.

Tuesday: Nella, still with minor hives, has an appointment (totally unrelated to the hives) with Mom all by herself at the McMaster Psychology Department to participate in a study. The Psych Dept at Mac is right beside Caleb's hostibull. Very Important. Nella sorts some shapes, answers some questions, and then picks a treat out of the treat box. Just like at Caleb's clinic. Nella arrives home and dances around her siblings with her special treat.

Wednesday: A trip to the eye doctor. Caleb and Aleah check out just fine, but Nella needs special attention: her eye sight is poor. Nella needs to meet with the doctors several times to get an accurate prescription, and then has to sit with Mom while trying on new "sunglasses" (glasses). Nella is praised for looking "just like Emily." Caleb stomps his foot and clearly shows his frustration at the amount of time he has to wait for his sister; Mom and Dad tell him he has to be patient and wait for Nella's appointment to finish. Nella dances around and sings about getting new sunglasses.

Thursday: Nella receives a phone call from our dentist's office: Nella has one the "No Cavity Club" for July, and needs to come in for a picture and to receive a gift card to Toys R Us. Nella dances around with her card, singing about what she will do with her card. Caleb suggests that she buy a crane for him, to compliment the bulldozer he bought when he received a gift card. Nella says she'd like to buy a "girl" (a barbie).

What a week. It is something special to take pride in Nella's joys, even if they are slightly unusual. I don't know the long term effects of growing up as a sibling of a child with cancer, but am fascinated (and occasionally: sad, frustrated, worried, amused) by Nella's responses to medical attention of any kind. She has been deeply affected, that is certain. As a parent I weep inside for the loss and uncertainty she experiences. Outwardly and inwardly, I am so deeply PROUD of her for all she has endured and achieved in this last year. She truly is a SuperSib.

...And speaking of praising my sisters--I am celebrating along with mine as the Appeal for Wheels fundraising goal is smashed! Check out the link. It is a gift, and what a blessing. Thank you everyone for your support for them.

3 comments:

Sarah V said...: What an awesome post. It must be very challenging to try to balance all these things as a parent.

I just wanted to say that my brother-in-law is a SuperSib; his younger brother went through leukemia. My brother-in-law even donated bone marrow cells to his younger brother. I was also good friends with their sister. They are both truly amazing people. Their whole family maintains a special bond of closeness that I've rarely seen. So keep doing what you can for Nella & Aleah, and rest assured that God will use this experience to mold them into SuperAdults!; August 30, 2011 at 1:22 PM
Anonymous said...: This post has made me laugh...oh Nella!! She really is one of a kind!

Good luck at school this week!

Rachel; September 6, 2011 at 9:27 PM
Anonymous said...: Love the Supersibs trophy! She definately deserves it! That's awesome. I'm glad she got lots of special attention this week too, I hope you all enjoyed it a little and Caleb didn't get too jealous!
~Elly; September 8, 2011 at 12:16 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.