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Discussion Starter · #421 ·
UPDATE ON LEEVI:
We got a phone call from Leevi’s Neuro-Oncologist from MSKCC updating us on where we stand with the clinical trial. We were originally supposed to be up there starting at the end of this month for the CSF flow study followed by dosimetry dose then big dose one week later.
Things unfortunately have been delayed again due to shortage of the radioactive iodine. At this point it’s looking like we probably aren’t going to be able to start until the end of Feb. - beginning of March as long as meds are available.
We were told that it would be best for Leevi to start oral chemotherapy medication (etoposide) as a “gap treatment” in hopes that it may delay or prevent a reoccurrence. We are waiting to hear from Leevi’s oncologist in Danville to find out more details. Etoposide treatment will be carried out in Danville under direction of MSKCC Neuro-Oncologist. Leevi will undergo another MRI of his brain on Jan. 25 in Danville just as a “maintenance scan”.
 

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Discussion Starter · #426 ·
Leevi goes to Danville Monday morning to see his Oncologist, weather permitting. He should be starting his oral etoposide (chemo) the following day. I am so scared that his counts will drop and he will become neutropenic or even worse, febrile neutropenic. Unfortunately we were in that situation when he was barely 2 and going through chemo. I’m hoping and praying that things go smoothly and that MSKCC can get access to necessary supplies to start the clinical trial!
Jan. 21 Leevi will see his audiologist to have his yearly hearing test done. Hoping for stable results!
Last audiogram (1 year ago) showed bilateral moderate high frequency hearing loss and mild normal range hearing loss in his left ear.
Jan. 25- *Aiden’s birthday
Leevi has to go to same day surgery in Danville, be put under general anesthesia, intubation, etc. for an MRI of his brain. This is a maintenance scan.
Feb. 2 we go back to Danville for Leevi’s radiology oncology appointment. More than likely we will get the final MRI results at this appointment.
Mar. 3 Leevi has his orthopaedics appointment to address his ongoing bilateral foot pain. Hoping to find out for sure whether or not he has tarsal carpal coalition.
Forehead Skin Smile Chin Hairstyle
 

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Jim, give that SUPER HERO a hug for me and tell him I think of him often. He was my inspiration when I thought I was not going to make it.
 
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