September is Childhood Cancer Awareness Month

I met the Shaw women through blogging 15 years ago. Four sisters, their cousin and their mother who is now over 90 all bloggers. All were pastors’ wives or teachers or both.  They are an amazing family.  Now they are all on Facebook, so I follow and talk to them there. This post is from Facebook and is by Larisa, Carol’s daughter, whose daughter and Carol’s granddaughter, Lily, was diagnosed with cancer over 10 years ago, had passed the important milestones, and then two years ago had a relapse.  She writes:

September college football, relapse, end of treatment, childhood cancer awareness month!

I head into September conflicted once again. 10 years ago the first September after Lily was diagnosed I charged into the month determined to raise awareness for childhood cancer.

The last 10 years hasn’t weakened my resolve, but it has rocked me to the core. The first go around I was filled with the hope and confidence of a fighter in their first fight beating their opponent. Now bloody and tired we are trying to deliver the knock out punch praying cancer stays down on the mat for not sure how much more we can take.

2 years ago on September 1st I remember feeling almost guilty posting about childhood cancer awareness month as I thought about Lily surpassing the ages of many of the friends we had lost. She was doing so well. I remember telling Deb at a fundraiser I felt we had reached the point cancer didn’t rule our lives.

That obviously all changed Sept 22 of that year with one blood test. Over the past two years I have waffled between thankful my baby is kicking cancer’s butt for the second time and very mad/sad over the fact she would have to deal with this all again after overcoming so much. I’m mad I couldn’t protect her from that. Mad she has so many horrible side effects. Mad she missed out on so much.

Many people say cancer parents are so strong. I don’t know how accurate that is. Often I feel like a stronger person would be able to protect their child from the horrors, instead as a cancer mom I am responsible for making sure she gets to and through every single bit of torture that could kill the cancer and then smile and continue life as if this is all normal.

I count out 20 or more pills a day for my child to take.

When she hurts I offer up not Tylenol, but oxycodone.

I thank the nurses when they hook her up to toxic chemo therapies.

I calmly call over a nurse and doctors when her throat starts closing from infusions.

I have pushed chemotherapy directly into her blood stream.

I kiss her forehead and help them position her as she drifts off to sleep so they can inject poison into her spine.

I sucked dead skin out of her mouth with a small vacuum and hid the flesh that came out so she wouldn’t see how bad it was.

I’ve helped them hold her down to give painful shots.

I silence IV pumps when I can’t take the beeping anymore.

I have stayed up all night to press the morphine button so she will sleep through the pain. Praying she wouldn’t remember the pain and she wouldn’t become an addict.

I have given multiple shots a day into her abdomen. I have asked her younger sister to give her shots too when I wasn’t there .

I have smiled and tried not to act like it didn’t make a small part of me feel inadequate when some well meaning parent gave me a homeopathic “cure” that I knew was bogus, but still made me question myself.

I have brushed out clumps of hair from her head. Twice.

I have smiled and laughed as they have shaved off her beautiful blonde hair. Twice.

I have kissed her forehead and caressed her face with the true intentions to see if she has a fever.

I have remained calm when people have asked what we did to cause the cancer.

I have told her I needed a shower when really I just needed the water running so I could cry without her hearing.

People think cancer moms are strong but we are just doing what we have to do.

I can’t even speak for all cancer moms because while I have done many hard things, I have never had to do and pray I never will have to others.

Explain to my child what hospice is.

Hold her hand and kiss her and let her know it’s alright to go.

Go to her funeral.

Wake up each day and go to sleep not being able to do all the horrifying things that I’m privileged as a cancer mom to be able to keep doing.

The true heroes in the battle are our kids. I am as close to her battle as I can be, but never once have I had to actually take all those pills or head off to clinic finally feeling ok after weeks of feeling bad only to get another dose of medicine that will make me feel horrible again.

While I know as an adult - true friends are hard to come by, it is a hard lesson she had learned now twice that while everyone comes around the initial diagnosis that their lives continue and that when your life is chemo and blood counts it is hard to identify when their lives are homework, boys and sports. Sometimes it leaves you feeling like an outsider just wanting to be part of it.

Or that when you have no hair, it’s horrifying but it’s also hard when your hair grows back and no one understands the battle you are still raging.

So it has taken me 3 days into September to figure out what to say. And I still haven’t. I’m pretty sure no one wants to read a depressing post but it’s honestly where we are right now. So, I still have nothing much to say inspirational other than we need a cure. We need to do better for these kids. We need to better support them and their families. And September is our month as childhood cancer fighters to bring that awareness to the forefront.

I have watched the past couple days while numerous friends have turned FB gold for the kids. Some I know have done it in honor of Lily and that makes my heart sing. We have come so far in 10 years and I appreciate those of you turning FB gold while I have been standing in the corner of the ring trying to figure out how to finish this fight.

So for September if everyone who follows this page could just do one thing to help the kids fighting this battle. Give a hug to a friend fighting. Take a meal to a patient. Change your FB page gold to support the kids. Make a donation (no matter how small) to an organization that helps find a cure or support families. Just one small gesture will make the difference.

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: http://www.braintumorhumor.com. 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.