Devastating MPNST DIAGNOSIS MY SON!

My son just had a CT scan that found a mass lesion behind his left eye. Whatever it was also ate the bone behind and on top of his eye causing the brain to push his eye out a little bit. That was what brought us in for the CT in the first place. Well after blood work and ultimately an incisional biopsy they found it to be MPNST(malignant peripheral nerve sheath tumor). This was worst case scenario. I'm still having trouble believing it. This has devastated our family. So now they are doing chemotherapy. Chemotherapy has been known not to work for this tumor. This type of tumor doesn't react to usual treatment. The first course of treatment is to amputate or full surgical resection. It's in his head so we are all scared they won't be able to help. Nothing is normal anymore for us.
 
We aren't well off financially and only have one car. So now we have paid around 400$ in the last month for just gas money to get to his treatments in Milwaukee from Plymouth. My husband drives me there then goes home. We have been in the hospital for 5 day stays or in and out two or three times a week. It's unpredictable.  We are scared of falling behind which is already happening. Our utilities remain unpaid, we are worried about rent, and the groceries. I'm constantly cooking for Dexter to find him something he likes so he will eat to keep his weight on for chemotherapy. We are praying for a miracle. We need help. I don't want to end up homeless or with utilities turned off.

Also he is on a new medication everolimus. It treats late stage cancers. The copayment for this is $150.00 on top of the $150.00 for the nuelasta shot he gets. the everolimus is a 14 day pill that he takes between chemotherapy, so it not even a month passed until we owe another 150$ just for one medication.  My husbands insurance will only have these meds ordered through an out of state specialty pharmacy called accredo, but since they are out of state they will  will not bill our state insurance.
  • Cassandra Ferrin 
    • $20 
    • 30 mos
  • Beth & Mark Straub 
    • $200 
    • 30 mos
  • Anonymous 
    • $25 
    • 30 mos
  • Josh Flavin 
    • $150 
    • 30 mos
  • Shelly Plasky  
    • $100 
    • 30 mos
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Organizer

Monica S Greenwood 
Organizer
Plymouth, WI
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