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Showing posts from August, 2017

"Me too"

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We had walked into AUMC 3 years in a row for Preschool Orientation and meet the teacher. But never for Charlotte. Not last year. Brian and I usually turn the parent orientation and meet the teacher evening into a dinner date beforehand, and we did so again for this year's kickoff to the start of preschool. After dinner, down the street from our church, we strolled hand in hand into AUMC to begin the parent orientation night, back into the old familiar surroundings of this preschool which is part of our church. But we quickly saw familiar faces and feelings began to flood our hearts and we knew that being here at this moment meant so much more. This year, our Charlotte gets her "me too." It is her turn to go to school. It is her turn to get dropped off and come home with news and important tid bits of her day in which we were not a part of. It's her turn to wait in a car pool line, have her door opened, pull her school bag on her shoulder and look back with a smile t

Riley Rose Update

For those of you who have embraced and prayed for Riley Rose and her family, whom we've come to care so much about, they have gotten the best news possible. Although they unexpectedly found active Neuroblastoma in her brain during surgery due to a sudden brain bleed, all other scans and tests performed have been negative!!! This means perhaps she has a single site that has progressed instead of a large metastasis. For the family, this is best case scenario and a huge relief. They will stop current treatment, get her strong, and formulate a plan to attack at a new angle. Your prayers continue to shine a light for us in so many ways ❤️🌈 Your girl Charlotte is playing and full of energy. She's blossoming in front of our eyes, transforming from a toddler to a little girl. She's full of spirit, affection, curiosity, imagination, and honestly for the first time in a year and a half I would use the word content . Even while battling some of the mood swings that surprise even he

Immediate Prayer request: Riley Rose

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I write this here today because I promised a scared mother I would gather the power of Charlotte's village. I have witnessed first hand how powerful we can be when we combine our voices in prayer and send positive, uplifting thoughts. A 5 year old girl, Riley Rose, who is also fighting same cancer as Charlotte yet who has had an unimaginable uphill road that even I cannot wrap my mind around, has just come out of emergency brain surgery because during round 2 of immunotherapy she experienced brain bleeding and pathology has determined it is relapse Neuroblastoma and they are awaiting MRI results to determine extent of this relapse that has evidently spread into her Central Nervous System. I write this only to ask if all of those who have loved and prayed for Charlotte and our family over this last year could pause and send them up in prayer asking that whatever they find be treatable via the road with less resistance so that sweet Riley and this family doesn't have to go throu

The official last round of treatment has begun!

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Today officially marks the start of Charlotte's final round of treatment! She will take her twice a day Retinoic Acid pills for the next 14 days and then she has completed the front line therapy! The day is coming! After 6 rounds of induction chemotherapy, a 10.5 hr surgery to remove her abdominal tumor, 2 stem cell transplants involving more high dose chemotherapy, 20 rounds of Proton radiation, 6 months of Immunotherapy including at home meds cycling 2 weeks on 2 weeks off of Retinoic Acid (Accutane/Isotretinon) spanning almost 18months, her final round is upon us. And with that, comes planning for her end of treatment scans and bone marrow biopsy to confirm that she is clear of any disease. Those same scans and biopsy will most likely be the same scans to initiate her start of Sloan Kettering Memorial's stage 2 clinical trial for a Neuroblastoma Vaccine. So what is this Vaccine about? Many have asked. First, the medication she is currently taking every 2 weeks for the past

Swimming and baths and living Oh My

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To say Charlotte is beyond excited about being able to join her big brother and sister in the pool is an understatement. We braved a stormy sky with dark clouds spitting rain on Friday night because we promised her all week we would take her swimming Friday when daddy got home from work. The site on her chest where her central line was placed has healed.  She couldn't wait. The storm held off so, through periods of light rain, Charlotte literally JUMPED in the pool for her first time in a year. She didn't want to get out. Through the rain, her joy shined. She picked up where she left off when she was 2 by repeatedly and fearlessly jumping into our arms and swimming under the water like a fish. She even decided to go down the slide several times holding my hand and landing in daddy's arms. What a special moment it was to watch her do what her heart has wanted for so long. A simple thing: swimming. But to her, a mountain of a climb to get herself to this place where she can .