Everyone is napping, I call it a miracle, I needed some downtime!

Yesterday, was both our introduction to the oncology clinic (it is okay) and the proton therapy center.

The reason I say the oncology clinic is okay is it just isn’t Hassenfeld, which we love, there is no Cammie, Dr. G., and child life seemed to be lacking a bit and it just did not seem as personal, but it was good to have the conversations I have been having with Dr. G., with others to see if they agree. First, it was reassuring to hear everybody agrees with radiation as the next step, really because this tumor because it is a rhabdo is considered a rhabdoid tumor (think original opinion of ATRT) than medullo, as a result the order needs to shift, with medullo, you do induction (what we just completed) then consolidation (what we are doing in fall, high dose with stem cell rescue) then radiation. With ATRT, while the specific chemo is different and there are more rounds, the order is switched, induction, radiation then consolidation, thus that is why radiation is next. The other questions I asked were about if they agreed with our drug cocktail, the answer was yes, you can not get more aggressive than he is on and we are writing the history books with him so it makes sense, and if they would recommend maitenance after he finishes consolidation, the answer at this point no, which is exactly where Dr. G. is. The last question was about my concern on stopping chemo for about 3 months to do radiation, right now the chemo is protecting the rest of his body from it spreading with radiation it is localized treatment, it scares me, all the doctors agree it is scary, but basically what the doctor said is adding chemo that could actually help his type of tumor during radiation would be way too much for his little body to handle, so we just need to hope and pray that nothing spreads while we do it, Dr. G. Said it is something she always worries about too, but we are eating risks and benefits and going all out for a cure for Con.

As for our meeting on the actual proton therapy, all I will say is this stuff is way over my head and frying your 2 year olds brain is super scary with insane risks. We are lucky that we don’t have a choice and need to have faith that by coming to the best place in the world for this, that Connor’s risks are minimized. There is one outstanding question on what we should do with the brainstem, right now we agreed to back off on the dose because of my concerns, but I plan on calling Dr. G. tomorrow to make sure she agrees.

Today was a quiet day with just consults with anesthesia, the social worker, and a chest x-Ray on his port placement. Tomorrow is the big day with his sedated 2.5 hour planning CT, and Friday is his sedated two hour planning MRI.

Today we also toured Christopher’s Haven, and it will be perfect for us, only problem is it may not be available our first day so may need to find a hotel, used points for this stay, but hoping I can get in to the closer hotel since he will be in treatment, we will see.

Lastly, there are only 3 days left to get a supercon shirt, Aunt Ally added kids sizes, so if you want one, now is the time to get one! Claire can’t wait to sport hers and one of Meg’s teacher friends said it perfectly, “guess we all know what your family will be wearing at Con’s high school graduation!”


One thought on “Napping

  1. Erin you are just amazing. It gave me flashbacks to becoming an expert about things that we never imagined we would be. And I cannot express my happiness that everyone is napping. Even if you do not I know the quiet and calmness is restful for you!!

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