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Sharing our family's journey with a rare pediatric cancer predisposition syndrome known as CMMRD.

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The Goal Post Keeps Moving

5/2/2021

5 Comments

 
Adeline had her first brain MRI two days ago. Her ultrasound, blood work, and stool sample tests from this month had all come back normal. We thought we’d hear the same about her scan. Two days ago, we were not as fortunate.

Adeline was found to have a 2cm mass on her parietal lobe that her doctor diagnosed as an astrocytoma. Devastated does not begin to cover how we feel. We spoke with Dr. Tabori at Sick Kids, one of the leading researchers of CMMRD, and he reminded us that without a biopsy we can’t confirm cancer. To call it that would be “gossip.” He, and his incredible team, will be working with our team of doctors to find out for sure what we are dealing with. And then we will go from there.

Day by day. The goal post keeps moving. But what stays the same is our bright, happy, loving girl. Adeline woke up from the MRI asking for pancakes! She loved the cast for the IV and wanted one on her other hand. Her spirit keeps us going, keeps us laughing, keeps us smiling.

Please keep the bravest little girl we know in your thoughts. Thank you for all of your support.

Love,
​Christine and Ed
5 Comments
Kiersten (Llama)
5/5/2021 04:58:59 pm

Thinking of you and Adeline, I’ll keep all my fingers and toes crossed for good news ❤️

Reply
Kelly (KMRW)
5/5/2021 06:58:42 pm

Thinking of you all and sending you my very best wishes and prayers for good news for little Adeline. ❤️

Reply
Ellen
5/8/2021 04:58:10 am

Sending thoughts your way, this is all so hard. The goal post moving doesn’t make it easier. Keeping Adeline in my mind.

Reply
Laurie
6/22/2021 06:16:49 pm

Dr.Tabori and his group is amazing! I'm so glad I found your blog. I am available to share anything I can from our CMMRD journey to help you with your sweet daughter. The good news for you is that there is more research on this and much more direction as far as what to do than when we discovered that my daughter has it. Keep the faith and know that your miracle is just around the corner!! We will keep praying!!

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