Showing Cancer the Door

Big pink panther from Rob @ Owens Corning, one of our insulation vendors.


I believe my co-worker, Barb, summed up the decision the best. "Do you want to get hit hard? Or do you want to get hit harder?"

At the end of January we were presented with a choice to make regarding Hannah's treatment. It felt exactly like what Barb had said.

So after almost a month of research, crying, praying, facing down demons called cancer, and a bit more research, it came to me.

I want to show cancer the door.

We are going the high dose methotrexate route.

Just in case the post I wrote on this previously made no sense (I know, it didn't), here is a review of the situation.

The treatment Hannah's plan was based on; cancelled. The plan Hannah was on used an escalating lower dose of methotrexate during the Interim Maintenance, IM, phases. The second plan used, instead, a very high dose of methotrexate, HD Mtx, during the IM phases.

Turns out, the HD Mtx had results so far superior that the doctors who design these treatment plans, COG, considered it unethical to let our kiddos continue on the less successful study.

The HD Mtx study was increasing the event free survival rates by 6.5%. For us, that is a very real, very big number. Hannah had just finished her last phase of IM using the escalating low doses of Mtx. Her oncologist presented us with a choice. Finish her treatment plan as is, or add the HD Mtx to the end of her next phase.

It seems like a no-brainer. Stay on the study where the kids are relapsing, and hope she isn't one of them, or move to the high dose treatment that seems to be saving lives. One second decison, right?

Wrong. There were so many factors to consider. For time and space reasons I am only going to discuss the most important ones. First, the difference in dosing is significant. The highest amount of Mtx she had before was around 320 and that made her sick! The high dose amount would be 5000mg. She would need to be in the hospital for three to four days to receive it so they could monitor her and give her IV fluids. To help with the toxicity of this drug, Hannah would be given a rescue drug, Leucovoen, around 42 hours after the methotrexate.

The side effects of methotrexate range from uncomfortable to unthinkable. Mouth sores top the list of common. I think we could handle that. There is the usual list; diarrhea, hair loss, skin rashes, headache, backache. After that; pancytopenia, liver damage, renal failure, kidney damage, limb weakness, loss of memory, behavioural and cognitive issues to name a few.

The real concern, is that this chemo drug crosses the blood brain barrier. Neurotoxicity, is the side effect that keeps me up. Hannah is so bright, so smart. Annoyingly smart. I see some of temporary memory loss she struggles with already. It breaks your heart. I don't know if I can watch her light dim. To watch her struggle under a fog, with the memory of how she was, how she might have been.

There were other questions. Since we have already been through two IM phases, are we too late? Would this actually make a difference for Hannah? (I was told, it would improve her odds)

Then, I got the email from a friend of mine whose child had relapsed. They are preparing their goodbyes.

Sometimes when I think too much about the side effects I get lost. I don't want any of those things. I forget the fight is against cancer. If Hannah were to relapse, the side effects of high dose methotrexate would be the least of my worries. This is war and I want as big of an arsenal as possible.

We are being given a chance that doesn't happen very often. If this is what it takes to keep cancer out of my baby, then, we move forward. Our summer is going to suck. Hopefully, it will allow us to have many more.