Our cancer story began in early September 2023 when Lilly started having double vision and gaze problems. After many doctor's appointments, a misread CT scan, and being told it was probably nothing, the ophthalmologist sent us to the ER for an MRI at the end of September. The results weren't what anyone was expecting. We were told Lilly has a brain stem tumor, and because of its location it's inoperable, and that a biopsy would be very risky. We were also told our prognosis was very poor, that treatment would just be prolonging her life by months. This came as such a shock because Lilly had still had her usual energy. We were devastated and we grieved the loss of the life we thought we would have with her. After we got home from that first hospital admission, we were determined to find a second opinion from doctors who are more knowledgeable and experienced. We found Dr. Klimo, an amazing neurosurgeon who is associated with Le Bonheur Children’s Hospital and St Jude Hospital in Memphis, TN. After talking with him, we had renewed hope that we could safely do a biopsy and that Lilly's tumor could be treated by either a targeted oral therapy or traditional chemotherapy. We had Lilly's craniotomy and biopsy done in mid October and after being home for a few weeks we were losing hope that her biopsy results would show an option for oral therapy. We were starting preparations for traditional chemotherapy when out of the blue Dr. Klimo called. He gave us the great news that Lilly's tumor type had an open clinical trial for an oral therapy at St Jude and they had accepted us for treatment. We picked up and went within a few days. We knew we would be in Memphis for two to three months in the beginning so we moved our whole lives here for the time being. Lilly has had mild side effects on the oral chemo compared to traditional IV chemo. We are praying her next MRI shows shrinkage or stability of the tumor. We have hit a few bumps in the road such as immune system suppression and a UTI, but overall she is tolerated it well. We can't wait to get back home to Arizona to be with our family and friends, but we know we are where God needs us to be right now. We have felt His love throughout all this and we are grateful for the blessings we've received along the way.
If you would like to help the McCleve family with their daily needs, they have created a wish list of things that would make their lives just a bit brighter.
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