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A letter from a St. Jude Mom

by | Jun 21, 2017

“No child should die in the dawn of life.”

— Danny Thomas founder of St. Jude Children’s Hospital

Danny Thomas spoke these infamous words long ago; I would walk by them every day for nine months and wonder about that one child that inspired a legacy. A child that stirred Mr. Thomas to his core, sending him on a mission for a cure because to Danny children were the dawn of life and hope for our future.

My experience with St. Jude Children’s Hospital was like most people, TV commercials that sent me running to find the remote. Shamefully I admit that a child with cancer made me feel uncomfortable and was harsh reality that I did not like to look at. Changing the channel was an easy choice, it would not be long before I would come to a real deep appreciation for what one man and a dream can create. In the year 2010, I would join a growing number of parents in America who hear the words “Your child has cancer”.

The child would be our two month old baby whom we had just named Matthew. Our sweet little baby boy was born with a rare form of pediatric cancer called infantile leukemia. Overnight much of what I knew about children with cancer would prove to be wrong. I thought pediatric cancer was rare but the truth is every day in America 46 children are diagnosed with cancer. I also thought pediatric cancers, though a serious diagnosis were not terminal given our current technology and medical advancements. I was wrong again and upon Matthew’s diagnosis my child whose life had just started and was full of limitless possibilities was given a grim 30% chance of survival.

Danny Thomas’s hopes and dreams “that no child should die in the dawn of life” collided with mine, a simple mother’s hope and dream for her child to live.

Matthew’s initial phase of treatment would take place in Palo Alto, CA at Lucille Packard Children’s Hospital. Immediately my child’s newly formed team of oncologists placed him on the only experimental protocol in the United States specific for infant leukemia. Across the protocol papers was the name St. Jude Children’s Hospital, the research protocol we were using was created at St. Jude’s. Two world renowned hospitals collaborating on a cure because prestige and honor is not what motivates institutions like St. Jude’s, it is our children. In fact St. Jude’s freely shares any breakthroughs and discoveries they make because every child saved means doctors and scientists around the world can use that knowledge to save thousands of more children.

Initially Matthew would do very well on this protocol achieving clinical remission within a few short months. However infant leukemia is known for its very high relapse rate and our brave cancer warrior not only relapsed but my sweet boy had run out treatment options at Lucille Packard’s, with no viable treatment options they would be sending us home on hospice.

I remember holding my smiling little boy as doctors were explaining to me about taking my 1 year home on hospice. Matthew never knew he was dying so he was always smiling and as I held that smiling child I thought about what giving up would actually mean for us. Certain things are worth fighting for, Matthew and a cure for cancer would always be worth the fight.

It would be St. Jude Children’s Hospital that would extend our fight. A lengthy conversation between the two hospitals took place over a conference call. I remember all the medical terms and survival rates being exchanges was mind boggling. Then with the head of the bone marrow transplant team at St. Jude spoke words over the small speaker on the table that gave this weary cancer mom so much hope. He said, “I don’t know if I can cure Matthew’s cancer but I want to try”. This doctor happened to be an infant leukemia specialist and knew how doctors around the world struggle to treat this particular form of aggressive pediatric cancer and was no stranger to the odds stacked against us. The hard fight and difficult to treat cancers did not stop this doctor and it is that willingness to not give up that puts St. Jude’s at the forefront in the race for a cure. Matthew would be treated with cutting edge cancer and promising treatment called cellular therapy. Matthew would also become part of a collaborative effort called the Pediatric Cancer Genome Project; this project sequences the entire genomes of both normal and cancer cells from each patient then compares the differences in the DNA to identify genetic mistakes that lead to cancer. It has already led to many discoveries and led to less toxic cancer treatment for children.

It is that less toxic treatment that would have helped Matthew; he would be the one on the front line of this war against cancer. Doctors at St. Jude’s would learn a lot from Matthew but being on the front line of any war comes with risks. After 2 years and 8months of cancer treatment Matthew’s little body said no more. When my little warrior flew to heaven all of his team was there to say farewell to their inspiration. At that moment the barriers of patient/parent/doctor disappeared…I cried for my loss and so did they. The next time I spoke to the head of the transplant team at St. Jude’s; he recommitted his quest for a cure “Matthew’s blood is in my personal lab right now. I will never give up on finding his cure.”

It is this type of determination where innovation thrives and cures will be found. Your support of A Key to A Cure Gala will directly be a part of this quest to find a cure for cancer by funding a pediatric cancer research grant at St. Jude Children’s Research Hospital. Danny Thomas was no stranger when it came to asking for money, he knew the benefit would far outweigh the cost when he said, “It is my belief that St. Jude Hospital will one day announce to the world the great tidings of a cure for leukemia or cancer or even both. I am proud to beg for this project.”

Together we can be a part of a cure for cancer and proudly create a world of hope.

Thank you,

Aimee

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