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No "Evidence" of Disease????

Just a quick update as I’ve spent the majority of the evening working through the logistics of everything related to these results and it's been a tiring week…  At about 7:30 tonight, Dr. Park called and said she had spoken to the three (yes, three!) pathologists that had looked at Caden’s bone marrow slides.  None of them felt comfortable calling any of the cells neuroblasts.  Dr. Park could not really speculate on what the two cells taking up the stain might be (she’s not one to speculate), but when asked if they could be matured (and therefore benign) cells, she said, "It's possible."  There might also be disease that just wasn’t captured in this sample.  So, bottom line, I think, is that we are in the same position we have been in for the past 10 months or so.  His disease is so minimal that it is captured some of the time. It could decide to aggressively grow one day, or it could just go away on its own.  We have absolutely no way of knowing (I think Dr. Park says these exact words to me every time we talk).

 

It sounds as if the bone marrow report will read “inconclusive”.  As such, he does not have “evidence” of disease and therefore does not qualify for the trial in Texas with these scans.  We are hoping to learn that he qualifies for the DFMO trial sometime tomorrow and will start on that next week in Salt Lake City (just an overnight trip), but we will see…  I’m not sure how they will interpret the “inconclusive”.

 

Dr. Park has also said it is time to move to scans every three months instead of two.  She said if it comes back, two versus three months won’t make a difference.  (insert a sarcastic “comforting” here)  Right now, I’m continuing to be so happy that his disease (if it is really still there) hasn’t “progressed”, we won’t be on a flight to Houston in a few hours (that was going to be very interesting last-minute packing for a 6 week stay), we get more Montana summer (it really just started two weeks ago), looks like we’ll get to take that long overdue trip to Massachusetts and run the Falmouth Road Race raising money for neuroblastoma research, and Caden can start kindergarten without medical trips for at least the first few weeks.  SO HAPPY and thanking God and the universe for these things.

 

I’m just going to have to make peace with the constant uncertainty in our lives and the discomfort that resides in my heart.  Caden, well, he just goes with the flow.  Every moment is a gift with our sweet, sweet boy.  We did some silly pictures today (while waiting for the phone to ring) and I've posted one of Caden's favorites.

 

We’ll keep you updated!

 

FC

 

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Comments

11 Comments

Christopher Mumme
By Chris
Enjoy the summer and all the moments you have with your children. It sounds like you will have many years of enjoyment, that is what I am praying for. CGT
susan backstrom
By susan backstrom
YAY I GUESS HAPPY NEWS BACK IN BZN FOR A COUPLA DAYS AND THINKIN OF CADEN!!!!
Harriet Gagnon
By Harriet Gagnon
Belinda Van Nurden
By Belinda Van Nurden
Let's concentrate on this being good news and breathe and laugh and enjoy for this time! Love the picture!! Thoughts, hopes and prayers continue for all!
Judy Hensley
By Judy Hensley
Pam and Family, We are thanking God for your good news and will continue to keep you in our prayers! Have a wonderful rest of the summer, especially your visit to Upton. I know everyone has to be thrilled about that happening! Just want you to know....you are an awesome Mom and advocate!
Blessings,
Erika Tetreault
By Erika Tetreault
So glad to hear that Caden's disease has not progressed! But I can only imagine how difficult it is to live in a constant state of uncertainty and fear. Hope you're able to continue to enjoy your summer, time with Caden and family and have a great trip home to MA! I will continue to keep you all in my thoughts and prayers.
Susan McConnell
By Susan McConnell
I have "No evidence of disease" so I do understand that that "finding" while good, can still be a bit disconcerting. I love your attitude in "continuing to be so happy that his disease (if it is really still there) hasn’t “progressed”". Absolutely right on! Enjoy every day! Not sure if you are getting the unseasonably cold weather in Montana but whatever the weather, every day with the ones we love is heart warming!

I hope that your trip to the East (our neck of the woods) goes smoothly. We continue to pray for Caden and your whole family at church (Rev. Jim Hensley's congregation) and you have my prayers daily as well. I know what a nasty disease Neuroblastoma is and would love to donate to your fund raiser in Falmouth is you let us know how!
Love and Hugs from CT
Sue
Janet Coughlin
By Janet Neubauer Coughlin
You are amazing...a family of heroes...trust in God in each moment.
Tricia Giles
By
Pam,

I am soo happy for Caden and all of you that there is no evidence of the Neuroblastoma. That's the best that we could have hoped for! God is watching over all of you and, though we never know for sure, it appears God has heard our prayers for Caden to be cured. It's been a long haul, so sit back and enjoy this time. I know that's easier said than done! Meanwhile, the DMFO trial will happen if it's God's plan. He knows best! Will continue to pray daily for all of you.
Helen Naffziger
By Ron & Helen
YIPPEEEE!!! You go Caden!! Oh my goodness I am so excited to hear this AWESOME news!! You are right about that Caden does just goes with the flow. He is amazing!! What a privilege it has been to get to know him and be around him I have learned SO MUCH from him!! Love that little guy!! Fight on Caden!! Just the same we will continue with the thoughts and prayers. See ya soon!