The Brands: No Intracardiac Thrombus

Tuesday, March 29, 2011

No Intracardiac Thrombus

What does "no intracardiac thrombus" mean? No more clot!! It's gone! Completely gone. That's the best news we've heard in a while! Hurray!

We can't wait to stop tummy needles. April 4 is the expected end date for them. No more morning and night sit down, ice Caleb's tummy, clean it, give the needle, hold for 5 minutes. No more fear of brain bleeds and internal bleeding.  Good news indeed.

Caleb went to school for a full day today. He really wanted to. Today the inter-link nurse, Claire, came and did a presentation in Caleb's class about leukemia and the treatment that Caleb has had. She gave medicine to a doll--medical play like we've shown pictures of here on the blog--and showed a video that the makers of Peanuts comics put together. In the video, a friend of Linus gets leukemia. They visit her, she has medicine and misses school, and she comes back to school again. The class enjoyed the movie--Snoopy is funny no matter what context, apparently.  Caleb told me that the little girl had a "bob", and Anna said that the little girl was "blonde." What they were trying to say was that the little girl was "BALD" from her treatments. Her hair grew back just like Caleb's (and, speaking of hair, check out Hans' Hirsute Challenge in the side bar of this blog!).

Another thing Caleb learned today was the word "Cancer." He said, "Mum, today we watched a movie about Can-cer." He said it in such a specific way, unique. We have rarely referred to what Caleb has as cancer, rather using it's name, leukemia. It is cancer, but leukemia is a specific type of cancer. In the beginning when Caleb was first sick, Tim and I talked about leukemia and cancer, and named Caleb's illness leukemia more often, realizing that for us and most adults, cancer carries such fear just in its name. We can fight leukemia much more confidently than we can fight cancer. With the kids today at school, cancer and leukemia were no different from one another.  Something to think about. Hmm... I suppose I should probably check with Caleb to see if he knows that they're the same, that the nurse was talking about his leukemia when she was talking about cancer.

After a day and a half, what's Caleb's favourite part about school? They have a car mat. Easily impressed, he is.

5 comments:

Anonymous said...: hi Jess; reading your blog I found myself "hmmm" 'ing alot - and then smiled when I saw your "Hmmm" - I'm guessing we were on the same thought-path :) Congrats with the good news again; we praise God with you for that news and pray that those good gifts of good news continue! Also thankful with you for a new "normal" with Caleb going to school - love that there's a car mat there!! good stuff :) - peace & blessings - Michelle DB; March 30, 2011 at 9:32 AM
anya genevieve said...: So great about the clot being gone!! Take it the 'clot busters' did the job finally eh? Anyways, just lots of love and prayers and so wonderful to hear the news about the clot and praying too that soon the tummy needles will be all finished with. Give the kids my love and tell Caleb to have as much fun as possible at school - this will be a good memory to look back on when he's in oh say grade 11 or 12 and just wants to be done with it all/school!! God bless, love adn hugs, Anya xoxo; March 30, 2011 at 6:46 PM
Asna said...: So happy to see Caleb's clot is gone and also to hear that he is back in school! Yeah! Life will slowly start to normalize. Claire came in to Shaan's class as well, and it really helped. Shaan is also going to school regularly. Is Caleb's school everyday full day or every other day? Well take care and all the best,
Asna Chaudhry; March 30, 2011 at 9:00 PM
Anonymous said...: I'm so happy for you all that the clot is gone! Yay! You are always in our thoughts and prayers, and emjoy being done your last tummy needle!
~Elly; April 3, 2011 at 5:10 PM
Aunt Linda said...: Wonderful news!! Caleb was surrounded by love and prayer. So happy that he can continue being a little boy and not a "patient". Thank you Jess for sharing this journey.; April 10, 2011 at 9:47 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.