[If you would like to follow his progress: Devin's Story, our #tinybutfierce ]
The brain stem lesion was discovered in February of this year at 14 months old but was originally dismissed. We were told not to worry about it for 5 months. Then he had a follow up MRI and the lesion had doubled in size. Even then we were told not to worry. After asking for second opinions from his neurologist and neurosurgeon (who also contacted a tumor specialist colleague) we were finally given a referral to oncology. 5 1/2 months after the original scan he received a diagnosis of a pontine tumor. I guess we're finally allowed to worry..
At this time it's assumed to be pilocytic astrocytoma but the area can't be biopsied to confirm. He had a port placed and started chemo this week, 8/13/18. He's scheduled for 18 months of treatment.
He is currently receiving weekly chemo 109 miles from home. We're hoping to transfer treatment to our local children's hospital in a few months, but they aren't currently taking on new pediatric cancer patients.
In preparation for potential extended inpatient hospitalizations we are moving closer to the hospital. We just put a deposit down on a house <10 minutes away. We're hoping for a quicker 911 response time too as we've had to call 3x for him because he's stopped breathing in his sleep and it has taken between 10-15 minutes for an ambulance to arrive.
We are lucky that, so far, his medical bills have been covered by insurance but the unplanned move, missed work and travel expenses are really adding up. And we could use any help we can get since this isn't going to be a short-term problem. Thank you for reading.
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- Patricia Adams
- Patty Adams
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