After our 6 hour appointment was over (Tom explains the results below), we drove to see our niece Abigail clog to Mylie Syrus' "Best of Both Worlds," look at her 4-H exhibits, and watch her sell her pig, Prince Piggy. She was traumatized by the latter, and was inconsolable, knowing Prince's fate. It was sad and cute.
So glad to be around family and be able to do things like that, even if I'm not my normal 100% self.
Words from Thomas:
Yesterday we received completely unexpected word. The news we received did not negate Alison's Neuroendocrine Cancer diagnosis. It just complicated it.
For many tests, we tried to find where the cancer started. Through a colonoscopy, endoscopy, wireless endoscopy, and various other tests, Alison was a champ. The tests showed nothing. Just that her bone marrow was Neuroendocrine, and the CT scans showed a big mass in her belly. In the last two years, the neuroendocrine cancer spread to her liver, and a new mass developed in the lining of her lungs.
Then we got a biopsy of the big mass in her belly, to make sure the right diagnosis was found in the neuroendocrine cancer in her bone marrow biopsy.
Which brings us to now: the results are: her big mass is a neurofibroma. Neurofibromas are non-cancerous (Don't gulp because her bone marrow is still neuroendocrine cancer) in that they do not invade the organs, typically do not spread, etc. Neurofibromas are genetically inherited, and can lead to cancer. That's what we suspect happened in Alison's case: Gene kicks in gear, mass appears, mass leads to development in the bones of Neuroendocrine cancer. So to recount, we know that her bones have cancer, and that the big mass is a neurofibroma. What we don't know for sure is which type is in her liver and her lungs, although atleast the lung spot is in the lining, not overtaking the lung, which makes me think it's a neurofibroma. The liver lesions are actually in the liver, making me speculate that they're the malignant neuroendocrine cancer.Some other facts to note are that 1) neurofibroma has no treatment, except for removal by surgery, 2) removal by surgery can be effective, except that hers is wrapping around her spine and nerves there, and 3) one can live for decades with neurofibromas.And from here, we begin concentrating on two fronts: the fight against her Neuroendocrine cancer, and the control of her Neurofibromas. In the fight against the neuroendocrine cancer, IU is sending for the bone marrow biopsy slides before they can choose the next step, we're doing some more testing including a PET/CT Scan and a 24 hr urinalysis. In controlling her neurofibromas, we're going to see a neurosurgeon about the possibility of either removing or reducing her big belly mass. Atleast the kidney and aorta could go back to their normal position if they were able to reduce it.I'll understand if you have to re-read this post several times to understand what I wrote.
12 comments:
Hey Bud! I know this isn't eactly what we all have been praying for but I can see a definite silver lining and sense of HOPE now. I pray this is the begining of your road to being healed of this nasty disease. At least you guys can move forward now. More good days are too come. I am so proud to be your friend and happy that God put you where you needed to be. Sounds like you have some smart docs on your team.
Love- Kimmy
i gain so much by visiting here and reading each of your words.
you are such a grand team.
peace.
It's so wonderful to hear from you and that you got to see family. Thank you Thomas for the update. You both inspire and amaze me. You are in my prayers daily.
Andrea Weber
this whole thing keeps blowing my mind....it has been so unusual at every turn. But you guys are so blest with eachother and family and with an amazing God. P.S. Why did she have to sell her pig?
Jan
I love you both and I know that this is a lot to take in. But you are both so STRONG and that is why you have got this far. I am so gratful for these new doctors and all that they are doing. I love you both. Rene
It's so good to hear from you both, thank you for keeping us up to date... even though you dont have to and it must be exhausting to explain such an in depth situation. I continue to pray about this, although I understand that that can be small conselation indeed when facing a giant like cancer. Please know that there are so many people out here pulling for you both.
I'm so glad you guys have found your way to IU - sounds like that is exactly where you need to be. Stinks that the appointment was so long -- each time I've had to go there, I've noticed it takes forever as well. But they are good!
Let me know if there is anything I can do for you!
Lots of positive energy flowing your way. I hope it helps!
It's good to know that these Drs are digging deep to find answers. It sounds like you are in very good hands.
Stay strong, you are in my prayers.
Becky McKee
Answers and a game plan sound like positive news to me. Alison I hope you are feeling at least a little more like yourself. Still praying for both of you and sending *positive vibes* :)
Allison, I know you don't know me and not sure if I ever posted a comment on your blog before but I have been reading your blog and praying for you since I found it (probably around Dec 07).
You are actually the only blog I could find on Neuroendocrine cancer. I had an islet cell/pancreatic neuroendocrine tumor removed by the Whipple procedure earlier this year.
Anyway, I just wanted you to know that I am praying for you each night.
Alison,
Thanks for the post. I think about you and pray for your situation everyday and hope that you have some good days very soon.
Love,
susan s.
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