I feel awful for not doing a proper update! This one will be pretty short and pretty rambling since 11 PM and I have to be up at 5. As my acquaintances in Higher Ed know, this is the crazy time of year for work, for sure! Thankfully I have great support from my manager as well as other team members to help me juggle all the needs of Elan. I also have a FANTASTIC mother who watches both boys while I am on campus - so great to know they are in the best of hands. Finn actually gets upset when it is a "mommy" day now. He even asked me if grandma can be with us on "family days" (weekends). Bummer for me, but also total relief that the boys are having a blast with her. Tomorrow she is hosting friends for a "teddy bear picnic" like the song - how cute, right?
So you must be wondering how Elan is doing? Well, great! He just still hasn't let go of us to make steps on his own yet. I chalk it up to him just being Elan. We heard from both Indiana University (the proton doctors) and Dr. Heafner, the neurosurgeon from here that did his resection and both teams are jaw dropped shocked at Elan's response. They truely are amazed. I can't remember if I mentioned this - too lazy to look back in the past blogs but when they gave us the good MRI results the next day I called Elan's old hospice nurse ("old" since he isn't in it anymore!) to give her the good news. Well she said she already knew because she spoke with one of the oncologists in the team and they told her they are in shock over his reponse. They had no hope it would turn so great. The doctors in Indiana told us they were just hoping to stablize the tumor from growing. No one even hoped for such as drastic response and it even being to the point of disappearing in the next one. No one wants to use the possible hope for the "c" word (cure) or NED yet since it is only 6 weeks out and does have a spot which the neurosurgeon is calling either "residual tumor" or no tumor. Of course it was his nurse that called to give us that so we couldn't ask questions of what that exactly means... but of course knowing us we have great connections to him! One of our good friends from our congergation happens to be a nurse in surgery with him TOMORROW and she will ask for clarification. He may not tell her anything because of HIPA laws but we know the only other way is through an appt and that wouldn't be for a month - arrrgh, overly worked neurosurgeons! I must say, seeing what they do, he does deserve his pay.
We also heard back from the oncology group meeting and the group consensus is that doing interthecal at this point could lead to toxicity levels so we are going to wait and rescan every 2 - 3 months and reassess. They do recommend an oral (pill) chemo for the time being. We meet in a week with our oncologist to discuss if this is something we want to pursue right away or not. I am glad they came back so definative. We keep praying for things to be black and white and they are panning out to be, once again!
Dr. Heafner is going to present Elan to the neurosurgeon's group to see if there are any other ideas too regarding chemo. If different then what the oncology group came up with he will let us know. Good to have 2 groups looking at him for sure!
I did get to chat with one of my resources yesterday about doing the oral chemo only. She has her PhD in chemistry dealing with the brain and cancer so a pretty good contact! She has actually sat in on brain board meetings - the ones with multiple groups not just the oncology teams and gave me a behind the scenes take - basically they really don't know and just come up with ideas. Just good to know we are all kind of just trying our best. She also helped me understand a bit of what oral chemo can do and helped me not to be as concerned about it. At one point it was said to me the kind they are recommending in oral form is to be more of a "palliative" option so this concerns me as to why give him something if it won't kill the cancer. We will see. it is etoposide for those curious.
I will update about other things shortly and with pictures!
xoxo!
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