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Not what I wanted to hear

This was not the update I was hoping to give regarding Brooke's scans yesterday.  Her cancer has unfortunately progressed and she now has a second tumor that is located at C7 in her neck (her original tumor is at L4).  Apparently it has been there since her scans in February just prior to starting this clinical trial.  At that time I saw what appeared to be her thyroid area light up very brightly during her MIBG scan - I was concerned obviously but reassured that it was not NB and was lighting up because she had missed a dose of her SSKI drops that protect her thyroid during the scans (she missed the dose because the scans were done last minute and the drops are supposed to start the day before the nuclear medicine injection).  Then during her next set of scans in April, that area lit up again (but appeared lighter to me) and I was even more concerned because this time she did not miss a dose.  Extra imaging was done in that area but the radiologist again said it was not NB.  So today when it lit up again and yet more imaging was done in that area my gut told me this was progression and a call from Dr. Maris soon after confirmed my worst fear.  He said that it does look lighter than it looked initially and her tumor on L4 also looks a little smaller.  Because technically the progression occurred just prior to starting this trial and not during it that she can stay on the trial and that is likely what we will decide to do since both tumors seem to be responding to this treatment.  I will be meeting with Dr. Maris today at 3:00 to discuss this further.  They had her do a CT scan late yesterday afternoon of the area for additional images and then finished the day back in the oncology day hospital for a platelet transfusion.  Right now she is in the OR having a bone marrow biopsy.   Please pray for my baby - progression is a very scary thing with NB.  I'm trying my best to be strong and holding on to the fact that it at least seems to be responding.  
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Comments

29 Comments

Jeanne DeBenedictis
By Jeanne DeBenedictis
Praying for Brooke and for you Amy. My heart goes out to you, may The Lord uphold you with His Righteous right hand and give you peace.
Jim & Barb Betta
By
Hi! Amy & Brooke, you are in our thoughts & prayers. We are Gina Berube's parents & have been following your updates. Keep strong & "Fully Rely On God" (FROG). Here is a prayer that I was told works---"Our Lady, our Queen & our Mother, in the name of Jesus & for the love of Jesus, I ask that you take this cause into your hands & grant it with good success". God Bless!
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Suzanne Shelpman
By Suzanne Shelpman
I hate that this progression is a reality but have hope that Brooke can remain on the clinical trial. Praying hard that it is effective and for strength for her family.
Jennifer Curtin
By Jennifer Curtin
I have been following Brooke's updates and praying intently for her, and for you...if you can: go for a walk, take a few deep breaths and continue to let the support and love of this community embrace you both. Hope always exists...always.
Jeanne DeBenedictis
By Jeanne DeBenedictis
I am praying each day for Brooke and for you Amy. Keep holding on! I am putting Brooke on our Churches prayer chain, to add to the many whom are faithfully lifting up your precious little girl to Jesus. May HE comfort your heart and Heal your daughter!
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Ann Beatty
By Ann Beatty
HI,
I am a friend of Erin Darcy's and have been following Brooke these past couple of years. I just want you to know that I am praying for you both and that you have one amazing young lady on your hands. I hope that she is able to experience even more exciting things and meet even more interesting people. Take care and I am hoping for better news as this study progresses.
Carolyn Hall
By Carolyn Hall
Sending love and prayers for both of you.
Barbie Hannemann
By Barbie Hannemann
Praying for your both!
Donna Elliott
By Donna Elliott
Praying for Brooke and your family. May God keep you all in his strong hold.
connie ward
By connie ward
Prayers going up to u and your family, ill add you on my monday morning bible study. And at my church. GOD BLESS