When will we be home? …30 vs 33 treatments

I can't help but think of the Man in the Iron Mask every time I see his mask. This is how they get his head in the exact same position every day. I'm so glad he is asleep for it and won't have a fear of masks for life.

I can’t help but think of the Man in the Iron Mask every time I see his mask. This is how they get his head in the exact same position every day. I’m so glad he is asleep for it and won’t have a fear of masks for life.

Questions as basic as “When will you be done? When will you be home!?” we still don’t know the answer to.

We know that the brain can only take a certain dosage of radiation. We know that radiation to brains under 3 can cause significant more damage than those over 3 so they like to do as little as possible (obviously I guess:). We were originally told we would have 30 treatments before we came down to FL. Then due to a fluke scheduling error, our MRI became out of date (only valid for 30 days) so we had to have another MRI done. Even though I originally cursed the scheduler because this delay would mean we had to return after Thanksgiving for at least 1-2 days instead of being done the day before- I found myself Thanking our Father in Heaven that she messed things up because the new MRI had revealed that the stupid tumor was already starting to grow which they hadn’t thought it would. There was so much damage (good damage) done to the tumor during surgery to remove it that they doubted that the tumor would get blood supply in such a short time to become active. Well- that lil’ bugger is a beast! This confirmed how active and aggressive it is, as well as helped the drs know how to reposition the radiation to target the exact area that they could see as most active. This all amazes me thinking that it is a matter of millimeters that we are talking about.

This is the machine and it scans all around him while he pretty much just floats right there.  I asked my brother Wayne what he thought when he came out after going back with him. His response, "All I can think of is the bigger the machine... the bigger the problem... if that's the case- its not looking good". Let's home that because of the big machine- it IS looking good! :)

This is the machine and it scans all around him while he pretty much just floats right there. I asked my brother Wayne what he thought when he came out after going back with him. His response, “All I can think of is the bigger the machine… the bigger the problem… if that’s the case- its not looking good”. Let’s hope that because of the big machine- it IS looking good! 🙂

Due to the growth of the tumor, our original plan of 30 treatments was put into question. A lot of people have their “proton plans” before they start- how long, how much to each area, etc. Along with the plan you are given a rough idea- how much the eyes, ears, blood vessels, balance, hormones, growth, etc would be effected. But throughout your treatment they might change the dosage to each part of the brain. After 5 weeks, our doctors are still reviewing and researching to determine how many treatments we will be having and what dosage each area will receive. They usually justify increasing from 30 treatments (the max allowed is 33) if they feel they can attack the tumor to really give it that final blow. Well, in our case they can’t. Our little AJ’s tumor is hanging on tight to the most fragile part of the brain; the brain stem. The brain stem controls vital things like your breathing and swallowing so it would be detrimental if they over exposed that part of the brain. So the tumor sight, because it is on the brain stem, cannot withstand anymore than 30 treatments. The doctors are debating if it is worth the risk of exposing the rest of what was originally the tumor bed to the last 3 treatments even though they can’t attack the active portion. I think of it like the ants that kept visiting our new house when we moved in. They kept coming in from the ground that I couldn’t spray- but I felt like even if I couldn’t get their home base- I could spray the exit so they would never want to step out and spread out of their base.

We met with the doctor yesterday and they still do not know. They will hopefully be able to tell us more next week. Part of it will be to see how AJ reacts to the next 4 treatments before Thanksgiving. These last 2 weeks will be the hardest as we are definitely wearing on his little brain now. This is when the hair loss might come, the burning skin, the extreme tiredness, and who knows what else.

As always, thank you for your prayers. We are going to need them as we finish this out. Please also pray for the doctors to know what to do.

Baby AJ- taken a year ago this week.

Baby AJ- taken a year ago this week.

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Posted on November 22, 2014, in Proton Therapy, Radiation, UF Proton Therapy. Bookmark the permalink. 2 Comments.

  1. Hi MeiLani, I’m John Ragsdale’s wife, Amy. I will be praying for AJ and his doctors. Hugs.

    Liked by 1 person

  1. Pingback: Proton Mask | “Hacked” photos of AJ | Save The Cheeks

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