Chemo. That’s it. That’s all I have to say and everyone’s heart breaks and they picture hairless, sickly looking little kids. Dammit.
Today was much a repeat of Friday but with even worse news ending the day. There was lots of “okay, we can deal with that, that’s not so bad” followed by “say what?”. There was a period I am not proud of where I could not look another human being in the eye or utter more than a couple words for over an hour. Even I thought I might need some hospital intervention myself at that point. It was weird – I could hear Jake and Mary and Nikki talking about being worried about me and maybe they should ask the docs for a sedative for me but I couldn’t answer. Pretty sure that was classic shock. That was right after they said he had tumors in both eyes.
What we know is that he has the large tumor in his left eye that we knew about on Friday, and he has a slightly smaller but also “decent sized” (as the doctor said) tumor in his right eye but it is not in the field of vision. We also do not have the final MRI results but from the rough reading it appears the pineal gland is enlarged which has all of us, including the doctors, concerned.
So they no longer want to remove the left eye, because now that there are tumors in both eyes they want to do chemo to see if we can save both eyes so that he has a chance to see out of at least one of those eyes for the rest of his life.
Here is what we know will happen next:
*when he has 24 hours without a fever (stupid cold!) he will get admitted to the hospital to get a port put in that will stay in and is a place he will get the chemo drugs inserted, blood tests, etc for the next 5+ months – probably Thursday or Friday of this week
*at the same time he is in the hospital for the port they will run every test imaginable to get a base-line of things to compare to after cycles of chemo
*they will do a lumbar puncture to see if the cancer has spread
*after this hospital round, we will likely be in the hospital for 2-3 days every 3 weeks for the next 5 months or so doing cycles of chemo
After all that, while we are in the hospital this weekend, we will meet with the Oncologist team again and come up with a specific plan for chemo based on all those test results. Then he will start chemo. Let me repeat that for effect. He will start chemo. This is my baby.
So, to be clear, here is what we are hoping for at this point:
*no spreading of the cancer!!!! Yes, it needed to be spelled out that this is something we don’t want.
*chemo works – they will do tests again after the first 3 week cycle of chemo and we are hoping for tumor reduction but we will also accept the tumors staying the same size. If the tumors get bigger or cancer spreads, then we will likely have to try something harsher and more toxic than chemo. Yeah, didn’t know that existed did ya? This would be super-toxic chemo where the body is brought back from the brink of death by a stem cell transplant.
I think that sums it up. No cancer spreading, this chemo works. Focus all your energies people. And buckle your seatbelts – this is going to be a long and bumpy ride on what we call “This Is Our Life Now”.