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baby steps, baby steps... on the road to transplant
I'll start by saying that Joey fever free, happy, playful, and eating. We are of course thrilled he is doing so well right now.
Now on to the baby steps...
Dr. Groncy submitted Joey's information to City Of Hope last week. Yesterday she came and told me she had heard back from them and I needed to contact them and apply to get him in. So I called yesterday and left a message with New Patient Services. They called me back last night and took all of Joey's info.... diagnosis, insurance info, date of diagnosis, general disposition, etc... and told me his nurse would call me today.
This morning I get a call, bright and early. After reviewing the info Dr Groncy sent over they seem to have some interest in his case. She told me "We all know about Joey." She requested his biopsy slides, his scans from the beginning through present, and some general info. They'd like it ASAP. She also said she would call monday to set up a consult for sometime next week.
After getting off the phone with her, and now knowing exactly what is needed, I headed down to radiology to order a copy of all of his scans from here. My mom is on her way to take me to CHOC to get everything from them, and our old case manager has already been working on getting everything together.
The process is beginning.
We talked about Joey's disease, what we have been told, and about his siblings. We know Melanie will be tested. Whether David is tested remains to be seen. Me and DJ are already in the registry so they will be pulling those typing results as well.
After speaking with CoH, I got a call from a mom who I know from CHOC. She had taken her son to CoH for transplant and yesterday was his Marrow Birthday. His story gives me inspiration and hope and it was so nice to talk with his mom. It helped ease some of my fears and gave me some valuable information that solidifies our choice to take him to CoH.