September 15, 2018, will mark 3 years since little Johnny Morris was diagnosed with stage 4 high-risk Neuroblastoma. He was just shy of 7 months old when his parents got word from the doctors that no parent should ever have to hear, “Your baby has cancer”.
To say the last 1,095 days have been incredibly challenging would be a major understatement.The chemotherapy would start immediately for Johnny in order to shrink the adrenal gland tumor to a size that was safe to operate. On January 7th, 2016 little Johnny was on the operating table for almost 17 hours at Boston Children’s Hospital while the surgeon removed as much of his disease as safely possible from his tiny torso. Once he recovered from surgery, they would hit him with many more rounds of chemo, 39 rounds so far to date. He has had stem cell transplants, advanced MIBG treatments, 20 plus rounds of radiation to his chest and face. Over 150 blood and platelet transfusions. He has had a medical port in his chest every day for 3 straight years, many of them getting removed and replaced due to infections. He has been under anesthesia more than 90 times at 3 years old.
His vision and hearing have both been affected, he will never be able to have children of his own. He is not talking yet, only humming and babbling. He has only had hair for about 4 months of his entire life. All of these things are a direct result of dealing with this disease. Johnny has been robbed of just about everything imaginable, yet every day he wakes up smiling and ready to fight another day. His strength and courage could literally move mountains. He is the most inspirational person I’ve ever come across.His mother Colleen who also is his best friend and lifeline has never left his side for a second. After spending hundreds of days in Children’s hospital with her baby, her new reality is anywhere from 30-50 hours per week at Dana Farber’s Jimmy Fund Clinic where Johnny is treated.
Johnny’s type of childhood cancer is a very intense one that demands a lot of attention. Colleen was a successful Executive Assistant for over 20 years while always bartending at night as well. Since September 15, 2015, she has no longer been able to work due to the constant care Johnny needs every day. The financial burden that this cancer has put on the Morris family has been tremendous.There were times over the last 3 years that the outlook was not too positive.
But there is a new hope! With Johnny fighting so hard each day, he has finally made enough progress to go to Helen Devos Children’s Hospital in Grand Rapids Michigan and receive what his family believes to be life-saving medicine. He’s been accepted into a DFMO program with medicine designed to keep cancer cells out of the body. Even with this amazing news, the family’s been waiting over 2.5 years to hear, it comes with the challenge of traveling halfway across the county multiple times. This will be extremely difficult for the Morris family, not only physically and emotionally, but also financially. The Morris family has exhausted all of their financial resources during this non stop fight. With this new opportunity, they’re very hopefully that Johnny will be able to live a long healthy life.
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