Joshua’s Story

Joshua is 15 years old, and recently diagnosed with a tennis ball sized GBM tumor in his right frontal lobe.

Glioblastoma Multiforme usually effects adults over 35 and is not common in children or teens. It is also considered a terminal diagnosis, although they make small mentions of survivability in children.

The tumor was discovered on 7/6/2015 after he suffered a seizure late on a Sunday night. Then first resected a day and a half later on 7/7/15, then again 7/11/15, and now a third time on 7/27/15. In the middle came surgery to put a mediport in to his chest, and the simulations where they make a mask to strap him on to the radiation table with during his therapy.

Then comes the hard slog of Radiation/Chemo and infusions of other medicines to help kick this thing!

Update: Joshua has now finished 33 rounds of radiation along with lower dose chemo. The next MRI is on 10/26/15 and the weekly infusions and higher dose, monthly chemo start that week also.

Update: The MRI came back with the best results we could hope for. The tumor has NOT grown back at all in the interim, the brain is closing up the hole somewhat, and the suspect area from before surgery has shrunk, so there is no further targeted radiation needed for the moment. Infusions have started again and Chemo starts 11/2/15.

UPDATE: April 2016: Unfortunately there are secondary tumor sites and regrowth in the main tumor bed. Secondary, targeted Radiation was completed in late April 2016

Update: October 2016: Tertiary tumors have been found in the central ventricles. We are starting a new chemo regime to try lessen these tumors

Update: Jan 2017: Chemotherapy options have not lessened the tertiary tumors and they have grown. The primary and secondary sites are showing no/little growth. We will be entering a CDK4/6 study early Feb 2017.

 

Joshua was born in New Zealand, but has lived 95% of his life with his parents Tony and Debbie in Jacksonville, FL or Denver, CO. He is proud to call himself a Kiwi – even if it’s a displaced one, and very much wants to travel and see more of the country he considers ‘home’.

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