Chemo is done!!

From Drew:

This was without a doubt, the toughest cycle!  Thanks to Benadryl and Ativan, Ethan slept through most of it. We had them both set up on 6 hour rotation so he would get Beny then 3 hours later Ati. With his tolerance so low, he just wanted to sleep through the discomfort.

But he did it! He hung in there and pushed thru it. He is one toughest kids and we are proud of him! In the midst of this, he was adamant  that we provide some sort of gift to the nursing staff while we were there, so Beth got them a bunch of baked goods.

So what is next? I perceive we are only 1/3 of the way thru this journey at this point. The three parts being chemo therapy, radiation therapy, and then recovery and adjustment to being a survivor. 

The day before this cycle, we met with the radiation staff to discuss our treatment plan. Dr. Zakris is the head doc and seems like a very patient doctor whom has no problem with long awkward silences.  Lol

The radiation therapy will be 30 doses and last 6 weeks with photon radiation being used. I was surprised to learn it takes a week to just design his therapy. It will be designed in such away that only his third ventricle will receive radiation. As you all have seen, there is a mask that will hold his head down and in place. This will be trying for him, but he should be OK due to each session only lasting 15 min.  For those that have not done the math, we will be taking Ethan to radiation therapy everyday day Monday thru Friday for six weeks. This will be trying for us as the hospital is a hour drive one way and every Monday will be extra bit of time as we will visit with Dr. Z and on Fridays (I think) we will be visiting with Dr. V (our oncologist) after therapy.

Everyday we will be on the road a minimum of 2 hours and 2 times a week will be extra time  waiting on doctors. This would be to manageable if we were not already running low on steam.  For those that have asked, I think over the next 6 weeks either of these long days a home meal prepared for us would be massive blessing!

We don't have a specified date when radiation will start, but they are hinting at 3 weeks from now.  The 14th, we will have quite a few tests done.  hearing, eyes, MRI, hormones, spinal tap, blood, etc.  After we get the results, they'll tell us when we'll start radiation.

Side effects:
It was described  to us as "we will basically be sunburning the brain" so imagine a good old sunburn and now put that on your brain.  The good thing is the brain does not feel however the brain will swell which will cause his sight to get worse.  That by far is the most discouraging thing for Ethan. It is his eyes, falling behind in school, and lack of tolerance that has brought him to tears the most the past few weeks.

How is it the brain heals? Well, you sleep. He will have increased fatigue which again has been very discouraging and we anticipate he will fall further behind in school.  He told me the other day thru tears, "Dad, I don't want to have to redo my freshmen year."

So, now we will be spending a minimum of 10 hours a week on the road, hours waiting on doctors, and trying to balance how much to push the sunburned brain to do school. Fun! But he kicked chemo’s butt and now he will do the same to radiation.

He will also have skin burns on his ears and will continue to lose cognitive ability.  This is basically his reasoning and memory.  His third ventricle also houses his pituitary gland which controls hormones- they will be monitored weekly to help keep normal.

We are going to need help with gas  over the next few weeks.  So if anyone would like to pitch in here it would be greatly appreciated and can be done thru the service that Meagan set up.

The last 1/3 will be recovery.  How do you deal with never knowing and always wondering if there is cancer again? How do you handle having a mind that doesn't work quite like it did before (due to lost cognition). Then the eyes? Will they come back? No one knows?  How long? Add the desire to catch up in school to be with your buddies....or will you watch them walk the stage while u sit in the crowd?  He is strong enough!! Won't be easy in the slightest but he will do it! We will with the God given strength. 

For those wanting to help: please just do it without asking. We are putting all our attention into him and not thinking about ourselves so we find ourselves unaware of our own needs when asked.

Thank you.