Care for Cullen

Cullen Johnson was just a normal 9 year old boy until he was diagnosed with Primary Liptomengial Medulloblastoma (rare and agressive form of brain cancer) on September 21 of 2017. He has been in hospital since July of 2017 when he had swelling of his brain. He went home and was rushed back to hospital when he was diagnosed on September 21 2017 with the cancer. Since then he has undergone over 10 surgeries, multiple MRI’s and 31 very aggressive radiation treatments for his cancer. He also had extended periods of stay in PICU (intensive care unit) had a trach placed to help his breathing and we almost lost him during the process a few times. As far as we know, out of the 11 people previously diagnosed with this form of cancer, he is the only one that has made it to this point. He was finally able to go home in January and began physical therapy at home. Sadly, He has been in and out of the hospital due to complications of the cancer. He currently cannot walk and is able to only move via wheel chair. On February 20th he began his first treatment of chemo therapy. He will be inpatient one week a month for 6 months. We were informed that he will need a very serious plastic surgery to fix his head wound. This will require muscle from his back, to be cut and placed over his neck and head along with a skin graft, this also is not a guarantee that it will work, as that whole area was radiated during the 31 radiation treatments he previously received. Given all of this, it's very likely he will lose some mobility. Needless to say, This has all been a burden emotionally and fincancially on the family. His mother Kristi, has not left his side and has just barely returned to work part-time on top of being his primary care giver adminstering his medicines multiple times a day. She along with her partner Alonso, will continue to remain by his side to help him not only get through the process, but try to be as normal as possible. Given the fact that no one has made it to this point with this presentation of cancer, the family is unaware of what is to come, they do know that recovery will be long and exhausting and they truly are humbled by the generosity of so many, and cannot thank all of you enough for assistance during this difficult time.


  • Blaze Welham 
    • $100 
    • 28 d


Alonso Sarinana 
Salt Lake City, UT
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