We’ve had a side effect that we haven’t seen in awhile. She hasn’t had just straight chemo in I don’t know how long. She’s what I would call over emotional. Every little thing sets Katie-Anne off into a crying fit…and I do mean anything. Today I put Moana on Netflix in the kitchen while I cleaned, which she loves to sing to. No biggie right? Oh hell no. She was not having any of it. It was too scary. Forget that she could just go watch cars in the living room, oh no, I had to turn it off. Also, please keep in mind that she would forget she was scared and watch it for a few minutes then erupt again in hysterical tears. I don’t get mad at her. I know it’s the chemo, or maybe how it makes her feel afterwards. Regardless , I know it’s not her fault. She hasn’t had this issue since the beginning of ch14.18 (Antibody treatment). What’s really strange is that chemo seems almost easy now after it. Read that again. Chemo is easy now after antibody. Is that not the craziest thing you’ve heard? My four year old is a beast. I mean it, Katie-Anne is so tough. We’ve had multiple doctors tell us that she handles everything so easily. Even with saying that, ch14.18 required her to be on a morphine pump during treatment. Not a huge dose, but enough to control the pain that antibody results in. Also there is a button with a little shot of extra morphine if needed (green means go).
Here’s some info on ch14.18 real quick.
The ch14.18 monoclonal antibody specifically targets a substance called GD2 that is found at high levels on the surface of neuroblastoma cells. When the immune system detects the presence of the antibody on the cancer cells, it triggers responses that kill the cancer cells. (cancer.gov)
The problem is that it also affects the nerve fibers that signal pain. So while it is getting infused, for 10 hours or more, it causes the nerve fibers to signal that they are in pain, which causes the patient to have pain. My little girl. The little boy down the hall. Across the country. Across the world. Some are worse than others. Some handle it very well, like Katie-Anne. In fact, towards the end, it was doubted that she even needed the morphine, but it’s part of the protocol so it was still there.
Oh did I mention ch14.18 can cause capillary leakage? Is that even a thing?!?! Yes it is. Let me throw some more information in here real quick for you.
Capillary leak syndrome is an extremely rare medical condition characterized by self-reversing episodes during which the endothelial cells which line the capillaries are thought to separate for a few days, allowing for a leakage of fluid from the circulatory system to the interstitial space, resulting in a dangerous hypotension (low blood pressure), hemoconcentration, and hypoalbuminemia. It is a life-threatening illness because each episode has the potential to cause damage to, or the failure of, vital organs due to limited perfusion. (wikipedia)
I get asked to simplify this all the time. Basically her blood can leak out of her blood vessels into her body which causes low blood pressure and can cause organ failure. Katie-Anne never even got remotely close to this happening. I haven’t heard of any neuroblastoma kids I know personally have this happen to them, but it can.
Let’s talk about hives and skin irritation. That too? Yeah. Katie-Anne did have this pretty bad at the beginning, but towards round 11 or so it tapered off and she just needed regular scheduled Benadryl. Before that she had to have Benadryl and a cocktail of other drugs to help keep her from being itchy. Oh and if you thought she slept all the time because of the drugs, you’d be wrong. She was like a drunk sailor in a bar. Right when her eyes would drift close, she’d shoot back up and start talking or watching her phone. She seriously never slept. The nurses were absolutely amazed lol.
Throwing up and diarrhea. This was a hard one for us at the beginning. She would come home and violently throw up. Then a day later, she’d start just having the worse diarrhea. Her poor little bottom. This is the main reason why we didn’t really go after potty training. I think it would have just been cruel. We learned very quickly to stay on the Ativan/Zofran rotation no matter what. Once you think you are okay, that’s when it hits…and you can never get it quite under control again. About round 8 Aaron had an idea to start her on probiotics. We asked her oncologist and Dr. Watt said sure why not. I still believe, whole heartedly, that this was the turning point for us. Her scans showed she started responding better to treatment and her side effects after coming home were greatly improved. The last 4 or so rounds she didn’t need any medicine at all after she got home. At clinic they’d ask what she had has and I’d saying nothing and they’d just look at me like I was crazy ( I am) and start going down the list. I just kept saying no, nope, no, nope, nope, etc.
Oh crap, the Ambien is starting to kick in, I better hurry.
I haven’t even started on mIBG therapy. That’s the whole “inject your child with radioactive iodine attached mIBG so that it can attack the neuroblastoma cells”. This is the “let’s leave a 2 and a half year old alone in a lead lined room with 3M all over, attached to a radioactive catheter”. I was able to go into the room with her for about 5 minutes, if I was lucky, and hour, in a space suit and a Geiger counter as an accessory.
So what’s my point to all this. In my world, and many like me, when we say we’ve had an easy treatment because the previous ones were so harsh, there is a problem. Now don’t get me wrong, I’m grateful every day that there is even such a thing as ch14.18 and mIBG. It could very well be thing thing that saves her life. But, and this is a big butt (see what I did there?), when I say that my four year old daughter has had an easy week due to the fact that she only got a strong dose of chemo…there has got to be a way to find something that doesn’t torture our children while they fight for a cure. An easy week…vomiting, not eating, emotional issues, or any of the number of side effects, that’s an easy week. I know of children that have died from what we call “transplant”…also a few that have come close, too close. Those side effects are even more terrifying.
People talk about more than 4%, that our kids are worth more than 4%, and I agree absolutely. I guess I want to know what it is going to take to really show those that make these decisions how horrible that world of cancer for children really is. I’ve seen pictures on Facebook that make me cry, and yet the comments are cruel. How could you show this? Why would you humiliate your child like this? It is so that you will see what it is really like. I’ve posted thousands of pictures of Katie-Anne, and all but about 10 are super cute, happy, bald cancer baby. I think because thats how I only want to see her. I’m not afraid to show the rest though. People have asked if I should really have posted a picture post surgery of her. Hell yes. She is missing most of her ribs 1-5 on the right side as well as part of her sternum. Her shoulder and arm are basically connected to her body by a wire that is connecting it to her remain sternum on the top and rib 6 on the bottom. She has a sheet of pig collagen in there to try and form scar tissue. She’s part bacon you guys… Think about this…seriously.
These children are our future. Why are we not investing in them more than 4% of the cancer research budget. I don’t know that I have an answer. I wish I did, but I don’t. But I think that’s just how it is when cancer happens.