Sunday, September 17, 2017

Childhood Cancer Awareness Month

Another beautiful story by Carol Shaw Johnson whose granddaughter Lily is being treated for cancer after 5 years in remission.

"Today is September 17th – the 17th day of Childhood Cancer Awareness month. Today I want to honor Matthew LaRocca. Matt’s journey with childhood cancer began in November of 2009 when he was 11 years old and in the fifth grade. His family was living in Florida, and his parents took him in for an MRI to confirm a sinus infection. Instead, the doctor looked at Matt and said, “Buddy, you have a pretty big brain tumor in there.” The LaRoccas’ lives changed forever in that moment. The tumor was over 5 cm, and the doctors thought it had been there from birth. That would’ve explained some minor issues Matt had dealt with for years for which they never had answers. Matt had brain surgery on November 16, 2009, but the surgeon was only able to remove a small piece of the tumor for a biopsy. The tumor was a Ganglioglioma and it was benign. However, it was growing and it was located on Matt’s brain stem, and that made it very dangerous. The brain stem controls major bodily functions such as breathing and heart rate. Amazingly, Matt returned to school within a week of surgery.

Matt’s parents, Dean and Kim, left no stone unturned as they sought out the best treatment for Matt. They sent Matt’s records and scans to doctors throughout the country to get opinions to help them determine what to do. Matt was started on a chemo regimen to hopefully shrink the tumor.
Meantime, the family realized that they couldn’t make the journey alone. In addition to Matt, they had an older son, Jordan (15 at the time), a daughter, Alyssa (14 at the time), and then Ryan, age 5, who was the youngest of the 4 siblings. Since so much of their extended family lived in Nashville, they decided to move back home to Tennessee. There, they would not only have a large support system of friends and family, but they’d have Vanderbilt Children’s Hospital as well. Once they were back in Nashville, Matt continued his chemo while Dean and Kim continued their search for Matt’s best treatment options.

Matt had varied interests. One thing that Matt enjoyed was cooking. He had the idea that he would start making and selling snickerdoodles, 7-layer bars and “crazy croutons.” He named his made-from-scratch goodies “Miracle Matt’s Munchies.” He often took treats for the nurses and other patients when he went to clinic, and they looked forward to his homemade yummies. Matt even had a cookbook printed that was sold to help raise money for his treatment. I was happy that I was able to buy one. Kim wrote: “ He loved to bake for the very people that would stick him with needles, administer chemo, and make him do such odd facial gestures for neuro checks. He took his cooking seriously and did it all with such joy, passion, and love. I sometimes would wonder how such a young man could be so giving in spite of such a frustrating plight. But He pushed himself in everything he did. He kept up with school as best he could, read with his little brother, and offered to help bring the groceries in from the car when it was all he could do just to walk on his own.”

Matt had a great sense of humor, and he applied that humor to his brain tumor! His family started a website: Matt loved seeing the looks on people’s faces when he wore one of his t-shirts with a funny quote or saying about brain tumors. He felt it was a way to break the ice when people didn’t know what to say to someone going through such a difficult experience. Leave it to Matt to find humor in even the direst circumstances.

Matt also loved Legos. They were a signature interest for him. He enjoyed putting together Lego kits and creating designs with them. It was good therapy, both emotionally and physically. One day Matt said, “Hey mom, you know how sometimes people send me a little money in the mail?” Kim replied, “Yes.” Matt continued, “Can you tell them to just send Legos instead?” The boy loved his Legos!
Cold weather was something that Matt especially enjoyed, and so when he was offered a wish through the Make A Wish Foundation, he chose a cruise to Alaska. That trip was one the whole family will always remember.

As Dean and Kim explored options, they unexpectedly were able to talk with Dr. Ben Carson at Johns Hopkins. Dr. Carson discussed Matt’s case with Dr. George Jallo – another doctor in his group and the top doctor in the country on brain stem tumors. Everything fell into place to the point that the LaRoccas felt assured that this was the path God wanted them to follow. They went to Baltimore to meet with Dr. Jallo who would perform the surgery. As they were leaving, Dr. Carson came in and said, “So this is Matthew LaRocca!” He told them the story of a little boy who had a tumor similar to Matt’s and how he had been given 6 months to live. He laughed and said, “That was 20 years ago and he is in college now.” Kim said that the look on Matt’s face was priceless – a mix of relief and shock. That trip gave them hope. Matt’s surgery to de-bulk the tumor was done by Dr. Jallo at Johns Hopkins in January 2011. Matt had been suffering for 16 months from violent hiccups because of the tumor, and the surgery finally gave him relief from that, too.

Matt returned home and seemed to be doing well when, without warning, on April 6, 2011, his battle on earth ended. He was twelve. His mom wrote: “He won! Matt beat that cowardly brain tumor. While we are broken and void in heart, we are so thrilled that Matt is free to run again! Life will never be the same, but we are thankful for the battle he waged.”

Months after Matt’s death, Kim wrote on his CaringBridge page: “Matt was brave beyond his years and fought with the knowledge that the end of his life's story wasn't promised to be long. I recall him taking me to lunch not long after he was diagnosed. We talked about many things, I'm sure - music, food, school, life - but I clearly remember him looking at me and casually saying, ‘You know, Mom, there is no guarantee I'm going to make it through this.’ I recall looking him in the eye to see if I could read anymore into what he said (which I couldn't) and knowing my only response could be, ‘Matt, no one is guaranteed tomorrow. Not me, not your dad and not you, but I am going to see to it that you out-live us both because parents aren't supposed to bury their kids.’ In a way, he did outlive us. He accomplished real living sooner than we did.”

After his death, Matt’s family donated lots of Legos in Matt’s memory to help kids with brain tumors in their therapy. If you're reading this and wondering what you can do to help, here it is. Why don’t you buy a couple of Lego kits and take them to your nearest children’s hospital. Tell them you’re giving them to honor Matt LaRocca – a young boy who battled a brain tumor with humor, determination, snickerdoodles, and Legos. If you do, come back to this post later and leave a comment letting us know. Matt’s family would love to know that people are still honoring his memory by giving Legos to kids in the hospital.

Matt, you must be smiling down from heaven as you see how your family has continued your work to help others who are battling brain tumors. You taught us all lessons in treasuring life and helping others.

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