In 2013 at 15 months old Liam was diagnosed with a Craniopharyngioma, a pituitary brain tumor. It was so large the doctors say he had to have developed it while in embryo, he needed emergency surgery. The surgery was as successful as we could have hoped. The tumor destroyed his pituitary gland so Liam no longer makes any hormones on his own. He takes oral and injectable hormone replacements daily. Liam now has life threatening conditions he will live with the rest of his life. Panhypopituitarism covers them all (diabetes insipidus, hyponatremia, hypothyroidism, growth hormone deficiency, etc...) Adrenal insufficiency being the most important. Liam’s body does not have a ‘fight or flight’ any longer. His body now relies on steroids daily to survive. Without these, he can lose consciousness and may never recover. In the event of an illness or broken bone he needs extra steroids to fight the stress on his body. In 2015 the tumor grew back and was once again surgically removed. In 2017 there was again a new growth and another surgery was performed. During the 3 month follow up MRI another tumor was found. This tumor was removed in January 2018. Doctors have recommended proton therapy treatment to treat each area of the brain that has ever been diseased in hopes to not having anymore surgeries needed as it is just not realistic to have surgeries yearly and way to evasive to do this every year. The closest place to home for proton treatment is Seattle, Wa. Jessica (Liam's amazing mother) and Liam will be staying there for the 6 week duration of treatment. The the time off Jessica is taking is completely unpaid as she has already had a maternity leave to welcome the newest member of their family, Baby Scarlett. Jessica hopes to return to work in beginning of May as Liam’s treatment should be finished on May 5th but it all depends on how Liam reacts to the next six weeks. We will update here with information on how Liam is feeling and of course the outcome of this radiation. Please note we will not have results for a few months after treatment is complete.
I want to give a huge shout out to Jessica. She is one of the strongest women I have ever met and I am super proud of how she grows as a mother and women every single day. She has walked through each and every one of Liam surgery’s with dignity and grace to the best of her abilities. Thank you for your generosity and love during this time!
- Jay and Patty Jensen
- Josefa Hemmingsen
- Anna Nolan
- Tami Rice-Schaffner
- Ken and Tammy Beeler
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