A needed break! (Well Almost)

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Well I started this update and now editing it🙃. I was GOING to write how our girl has been on a much needed break from the hospital and treatment (even though we have had to go in to a local clinic in our town for a quick CBC several times to monitor her counts as she recovers from this last round of chemo) BUT then today she spiked a fever out of the blue so into Duke Children’s ER we go. But everything checked out and we should be going home shortly! Labs and vitals all look good, as well as a chest X-Ray they ordered to rule out infection. Hopefully just a quick virus and she will recover at home❤️Our sweet and social girl got her first FULL week of Kindergarten this week, had a friend’s pool birthday party Friday, and a day on the lake with Pops and Mimi (Brian’s dad Doug and stepmom Joanne) on Saturday, but she is technically immunocompromised and is likely to pick up little viruses maybe more often then she would have if she was not back in treatment. We do our best, but she is full of life and energy lately and wants to go to school and play with friends and LIVE life as a happy little 5 year old should!

This week it has been great to just watch her BE. Be 5. Be in school. Be happy. Be home. Be hungry😆 (She has gotten her appetite back and is enjoying food again yay! Chemo can temporarily make you feel not only nauseous but can affect how food tastes and make you feel full even after just a few bites.) So we are focusing on her nutritional needs and beefing her back up weight wise and over all nutritionally. We are gearing up for the next phase of therapy, specialized Hu3F8 Immunotherapy up at Memorial Sloan Kettering in NYC. This will be very intense on our girl lack of a better word. So we have begun to physically and emotionally plan for this next and very important phase. But first....we pray for scan results.

Scans will be here at Duke 9/17-18. We need them to not show anything new. We need our girl to qualify for this promising 3F8 immunotherapy. We need to be #familystrong now more then ever. We need to feel God and His presence in this place and time. We need to laugh when we can, feel light hearted when we can. We need patience and wisdom and more patience. We leave 9/19 for a meeting with the MSK doctors. 9/20 they will do a 4 point bone marrow biopsy and gather all results to review with us. And then we can begin. I will write more later about what is involved in this next treatment phase but for now we need to plan for Charlotte and I to be up there for 3 weeks for the start and for the first round of their antibody (3F8). I will update again soon but for now we pray for scans, and get to (hopefully) enjoy some carefree days at home all together. Thank you as always for your love and hope and prayers. #charlottestrong


Homework in ER again at Charlotte’s request😆Oh sweet girl


2 Cute videos of our silly snap chat girl to make you smile



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