Every Dr that has been involved in his care has told us that there was just something special about Matt, he just had a way of getting into people’s hearts. Matthew has always been known by his doctors and clinic nurses as the best patient-baker they have ever known. He has his own cookbook, been in the newspaper, on TV, on radio and also helped create a website (www.braintumorhumor.com) with his dad to bring brain tumor awareness through funny tee shirts. Some of his favorites were “BRAIN TUMORS SUCK”, “I got the scars on my head while fighting off 12 ninja’s who were after my lunch money…yeah, that’s what happened” and “Certified Chick Magnet…Courtesy of my last MRI”. You could always count on Matt for a great laugh!

Matthew was born October 23, 1998. When he was born the first thing we noticed was his head full of dark hair and a crazy cowlick. Matt was a cute butterball of a baby and smiled all the time. Through his early childhood Matt had little quirks but they never seemed to be anything major. He had a hard time tying shoes (fine motor tasks), learning to ride his bike (balance), a cute lisp and unexplained digestive issues.

Then one day, in Nov of 2009, his pediatrician saw a bobble in his eye called a nystagmus. It too was thought to be not a big deal, maybe a sinus infection or due to his glasses prescription needing to be changed. We followed the eye doctor’s suggestion and had an MRI. Within an hour a doctor looked our son in the eye and told him “You have an awfully big brain tumor in there.”

Our world started spinning and within hours he was admitted to the hospital and preparing for brain surgery. That was a lot to digest for a 11-year-old 5th grade honors student who was so worried about missing school and band practice that he was back in his seat a mere 7 days after major brain surgery.

Matthew was diagnosed with a large brain stem ganglioglioma, a very rare brain tumor and even more rare in its location. The tumor appeared to have been there from birth and very slow growing. This tumor was benign by makeup, but malignant by location. He was initially given a 10-20% chance of making it 1 year.

I refused to accept that prognosis and that is when the fight truly began. More than one doctor has called me ‘A force to be reckoned with’ and my hope is that I made more friends than enemies along the way.

While Matthew began to heal from surgery we were encouraged to take trips, visit family and enjoy our time. We consulted with a few doctors, but chose Amy Smith at the University of Florida – Shands to care for Matthew. The 3 1/2 hour drive to her was well worth it…she and her team are amazing.

Matt began chemo in Jan 2010 but after one round we stopped due to tumor growth. We took a break, built his body back up with natural alternatives and waited for more feedback. Matt finished 5th grade – he graduated with honors and a standing ovation.

During late spring we moved our family back to Nashville, TN to be closer to family and a larger children’s hospital. Matt’s worst symptom was hiccups – horrid, constant, brutal hiccups – due to the location of the tumor. After more tumor growth in the summer of 2010, Matt started another round of chemo that went for 5 months and was also put on decadron (steroid) for swelling. While the MRI’s continued to read stable, he was showing signs of decline in several areas.

He was doing PT and OT a few times a week and school was being done mostly at home. He was granted a Make-a-Wish and due to him being hot all the time he chose a cruise to Alaska which our family of 6 took in Sept 2010. It was an amazing experience and a huge blessing to Matt.

During the summer and fall months, I consulted with doctors at Duke, Boston Children’s, Cedars Sinai, St Louis Children’s, etc… No one seemed to think his tumor was operable, at least not without major risk.

Then in December 2010 a connection was made with Dr. George Jallo at Johns Hopkins in Baltimore. They have an amazing track record with brainstem tumors and Dr. Jallo does more resections yearly than all the other doctors combined in the world. We decided through much prayer and thought that it was our best chance.

Matthew’s surgery was on Jan 7th, 2011. He did fabulous. While other facilities predicted he could be in the hospital for upwards of 3-4 months, we wheeled Matt out the doors just 6 days post-surgery. The most amazing part was they resected 60-70% of the tumor and Matt was hiccup free. A miracle! We were back home in TN a mere 8 days post-surgery and we began a 4 day per week PT/OT regimen.

Matt worked so hard to gain his strength, endurance and dexterity back. The steroids had been brutal and resulted in over an 80lb weight gain in 8 short months. Despite the success of the surgery, Matt was miserable and growing tired. In late March, Matt decided he did not want any more treatment, which included the last resort recommendation of radiation.

He woke a week later with a fever and what sounded like pneumonia that had set in literally overnight. The tumor’s location compromised his respiratory system and heart rate. He was admitted to the hospital for antibiotic treatments and observation but his body had all it could take. It all happened very fast from that point on. I heard ‘crash cart’ and saw people come running. He had just been watching Jimmy Neutron and eating a chicken quesadilla! The doctors and nurses at Vanderbilt worked tirelessly on Matt for 45 minutes to intubate him but in the end Matt decided it was his time to go home.

Matt won! He defeated the brain tumor that tried to defeat him.

We made a decision at diagnosis that life would not be lived with Why Us questions. Life isn’t always fair or painless, but God is good and we would trust Him through that journey. If God did not heal Matt on our terms, which would be to continue life here on earth with his family, then the only things I had asked Him was that Matt not suffer, He take him swiftly and that his little brother not be present. The events of April 6, 2011 that led to Matt’s passing were just as I had prayed. Not a thing was missed by our God.

Many weeks have passed since Matt physically left us but he is still a very important part of our lives. I’m sad he missed the season finales of The Office and Big Bang. That he hasn’t gotten to see his little brother play baseball this season or who won American Idol this year. But I know Matt got the better end of the deal.

He taught so many people so many lessons in his life. His impact has gone literally around the world. He is whole, free to run, free to play football again and free of a cowardly brain tumor that tried to take him down.

While our hearts are broken, we are at peace knowing we did everything we could for Matt. Thank you to the Brain Tumor Foundation for all the support, resources and encouragement you have given to our family. We are blessed to have been put into contact with you all. Fight on, brave kids, FIGHT ON!

The LaRocca Family – Dean, Kim, Jordan, Alyssa, Miracle Matt and Ryan www.caringbridge.org/visit/matthewlarocca

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

. © 1987, by Emily Perl Kingsley. All rights reserved. Reprinted with permission of the author

In the meantime, we remain devoted to our families and making sure we continue to share hope and information along the brain tumor journey.  Here are links to articles regarding research currently being done, as well as general news regarding the brain tumor community.

According to information shared in a Science Daily article – “More Accurate Diagnosis for Leading Cancer Killer in Children May Be Possible” – researchers at Huntsman Cancer Institute at the University of Utah discovered “genetic differences in the different tumor grades that may help explain tumor development and could lead to more accurate diagnosis.”  This discovery could then lead to more specialized treatment options.

In “Vitale Tweets about Youngster’s Fundraising Efforts”, Chad Brockhoff of the Sarasota Patch writes about brain tumor survivor Andrew Lakey who organized a carwash in his local community to benefit the Brain Tumor Foundation for Children.  Dick Vitale, well known in the world of sports and advocate for those affected by cancer, learned of young Andrew’s efforts and shared the information with his many followers on Twitter.   

On May 21, 2011 CBS News reported that MLB legend, Gary Carter, was diagnosed with four brain tumors.  Carter played baseball for 19 seasons that included time with the Montreal Expos, New York Mets, Dodgers and Giants.  NOTE:  After the initial story by CBS News, Carter learned that he has a highly malignant form of brain cancer – glioblastoma.

In the most recent issue of The New Yorker, an essay by acclaimed author Aleksandar Hemon, “The Aquarium,” depicts his family’s brief, yet painful journey with brain tumor disease.  Hemon’s 9-month-old daughter was diagnosed with a rare brain tumor and sadly, lost her battle with the disease.  NOTE:  The links only offer an excerpt of the essay followed by a review.  You can purchase a copy of The New Yorker or subscribe online to read the complete essay.

Disclaimer:  The information provided is not intended to provide medical advice or any sort.  Views expressed in the above-mentioned articles do not necessarily reflect those of the staff and board of the Brain Tumor Foundation for Children.

In the meantime, we remain devoted to our families and making sure we continue to share hope and information along the brain tumor journey.  Here are links to articles regarding research currently being done, as well as general news regarding the brain tumor community.

Five-year-old Calla, along with the families of seven others affected by pediatric brain tumor disease, enjoyed an opportunity to meet Georgia Governor Nathan Deal on May 2nd as he signed a proclamation acknowledging May as National Brain Tumor Awareness Month .  Click here to read full story.

Meet nine-year-old Mao and his mom, Sachiko, as they share their journey with brain tumor disease in Hope for Pediatric Brain Tumors. Although blind, Mao lives life as an “average kid” enjoying everything from playing piano to joking with friends. Young Mao, with his brother AJ at his side, even took to the runway at the 5th Annual A Taste of Hope fundraiser started to honor the life and memory of Kendall Johnson, while raising funds for the Brain Tumor Foundation for Children.

On May 24, 2011 Senator Charles E. Schumer of New York introduced legislation to create a research and prevention network to combat childhood brain tumors – The National Childhood Brain Cancer Prevention Act. This network will establish a research strategy to help provide deeper understanding of the causes of pediatric brain tumor disease.

In, Life After Two Brain Tumors, AJ Archer of the Covington News introduced readers to 15-year-old brain tumor survivor, Kylie, diagnosed with a craniopharyngioma as a toddler. Kylie’s story continues to be an inspiration to not just her family, but the many lives she touches each day.

As part of monitoring her condition, she routinely has to undergo MRI’s to scan for anything that might be of concern.  At nine months old, it was discovered that she had a stable Optic Nerve Glioma, which is a tumor on her optic nerve. For years we monitored this stable tumor and didn’t feel overly concerned about it.  However, in November of 2009, all that changed.  An MRI revealed that the tumor had enlarged and had moved from just her left optic nerve into what is called the chiasm. (This is where the individual optic nerves intersect.)  The growth of this tumor is of concern because it could impact her vision at some point and now this harmless group of cells has manifested itself into what we never wanted to hear a doctor say affecting our little girl…cancer!

Unfortunately, Rylee had to endure 15 months of chemotherapy.  During which, she showed us just how brave and strong she was.  Even through all the finger pricks, port accesses, chemo medicine that made her weak and sick, some hair loss, MRI’s and everything else, she never complained.  Of course there were times she was scared and sad but overall, she took it all in and held her head up and did what she needed to do.  All she wanted was a hand to hold and for us to be there with her through it all.  To say that we are completely impressed with her is an understatement.    

This experience wasn’t something we thought we would have to go through, but looking back, we can see the blessings of it.  Our family is forever changed…for the better!  And we’re thankful for the friends and family that carried us through.  Rylee finished her chemotherapy in February of this year and has won the battle…her tumor is once again stable!  We continue to pray that this life-long war (NF) will not rear its ugly head again and hopefully the worst is in the past!  But for now, we are thankful to have our happy little girl back.  Watching her smile, laugh and play with her brother and other children again is just what we all needed…and now cherish even more!

Tanner was admitted to the hospital and the next day he had a shunt put in to drain spinal fluid off his brain. Three days later the unimaginable turned to reality…we had to put the life of our precious baby in the hands of a stranger.  Tanner had a craniotomy to resect some of the brain tumor. Some of it is in his brain stem and cannot be removed.  When the pathology report came back he was diagnosed with a low grade astrocytoma, which means “slow growing” tumor.  It is a benign tumor but it is in a very dangerous place so it has to be treated like it is malignant.

Following surgery he was treated with chemotherapy for a year and 4 months.  He was such a trooper through it all.  Sure he was sick and in and out of the hospital a lot, but you couldn’t tell it by his determination to keep living.  He has always been the kind of child to fall and get right back up and keep going.

For the past 10 years we have lived chemo-free, but recently found out that Tanner’s tumor is growing again and he needed another brain surgery.  On November 10, 2011 he went back into the operating room. I could not believe we were reliving this nightmare. Tanner was very brave and did not shed a tear. I cannot say the same for myself, but I was very proud of my son.  During the next eight hours we waited for the minute we were reunited with Tanner. Words cannot express the feeling when I saw him on the stretcher. God brought our precious son out of surgery and back to my waiting arms. During the next four weeks Tanner was in ICU and then CIRU (inpatient rehab). It was almost harder this time than when he was two because then I could put him in my lap and put my arms around him and pretend nothing could hurt him….this time I had to watch him fight to walk, talk, eat and spend his 13th birthday in the hospital. I put on a brave face and hid my tears and he amazed me every day as he got stronger and never complained. After that, he went to the Day Rehab program at Scottish Rite for six weeks. During the surgery Dr. Boydston got 85% of the tumor but in the process a nerve was damaged that paralyzed the right side of his face. This has been a battle we were not expecting. However, we are very hopeful that God will heal him from this; but if not we will still praise His name that we still have Tanner. 

Today he is in speech and physical therapy and back at school. So far he has not had to do another round of chemo but he is getting MRI’s every three months so we are watching it and praying he does not have to go through that again. He still has a rough road ahead of him but he is the most determined child and I know he is up for the challenge. To this day I don’t understand why Tanner has had to go through this but I stand in amazement of him, he is my Hero and I am very proud to be his mom.

We have learned a lot that we never wanted to know about pathology, chemo regimens and blood counts. We would give anything for Tanner never to have had to be touched by one needle or medicine that made him sick or the surgery that saved his life, but as the saying goes…If God brings you to it He will bring you through it and He has been with us through it all.

Tanner has two of the best doctors in the country (Dr. William Boydston-neurosurgeon and Dr. Claire Mazewski-oncologist). We are still not sure what the future holds for Tanner but with their knowledge and God’s grace we will fight this battle with our precious son and I know we will come out safely on the other side.

My Brayden was born on December 27, 2006. That’s when everything changed for me and I began living for something so much more important. He became the light of my life and my world started revolving around him.  

On October 9, 2009, the world changed for me a second time. We had been back and forth from the doctor and the hospital for a month. Brayden started throwing up on September 11^th. It started as just throwing up an hour after he woke up, to a few days later, when he started dry heaving the second he sat up in bed. Then it started happening randomly throughout the day, and then finally he would start waking up in the middle of the night vomiting things he had eaten twelve hours before. I was scared, but the truth of what was going on was so far from my mind.

After many trips to the hospital, several tests on his stomach, we went in for a CT scan of his stomach. While there, we were telling people his symptoms. The radiologist was talking to my Mom and she told him how it was mainly in the morning, and he told her that was a sign of something neurological. He said he wanted to have him admitted and have a CT scan done of his head instead of his stomach. I did not let myself believe there was anything wrong in his brain, I knew he was fine, as we had been playing baseball all summer, and he never stumbled or fell, and normally kids with brain tumors don’t just throw up, they also fall down, or their eyes cross, so many other symptoms, not just vomiting.

We were admitted and they took us back for the CT. I layed his body on a huge table, with him going partially into a big machine while several people looked at us through a glass window. He was scared and I held his hand. I told him everything would be ok. I sang Twinkle, Twinkle, Little Star to him, with tears in my eyes. I looked up at the people behind the glass, and my heart stopped. I could read on their faces that something was wrong. Dr. Pipp walked into the room and told me there was something in his brain and he would need an MRI. I was holding Brayden like a baby, with tears pouring down my face as I walked back into the hall. My mother started crying instantly as I sobbed that they found something. They took him back for the MRI and we started the 3 hour long wait for him to come back us.

My family began showing up at the hospital. Thank God we are blessed with very supportive family and friends. Although I was walking around in a daze because a part of me was missing, it helped for them to be there.

They brought Brayden back and we were sent to our room. A doctor walked in, one that is now a very big part of our lives, Brayden’s neurosuergeon. He showed us the MRI, explaining that Brayden’s brain had several tumors (one 3cm tumor in the middle and several 1-2 centimeter tumors around it); there were also pieces of tumor throughout his brain. And although I don’t remember this, he said Brayden’s spine was also covered from top to bottom in tumor. Three days later we found out he had a lot of free floating cancer cells in his spinal fluid. He was in the farthest stage of this cancer possible. We were thankful it was not in his bones, which does (rarely) happen.

Our new life began, a life living in the hospital and watching our son go through what no child should have to. Brayden had surgery on October 14^th to remove half of the largest tumor, thereby relieving some of the pressure on his brain. He had a shunt placed a few days later. They were going to send him to rehab, but the cancer was too aggressive. Brayden’s bladder stopped working because of the tumors on his spine and they had to put a catheter in. Two days later we were moved to Aflac; chemo started the day after that.

The chemo regimen was very aggressive. We were told we had to be as aggressive with the cancer as the cancer was with Brayden. He had three months of chemo, and through a process called Apharesis, they collected Brayden’s stem cells. Then he had three more months of chemo with three stem cell transplants in between. The first round was prolonged by a month when Brayden became septic; we almost lost him. He was put on a ventilator which he coughed out. They tried a bypap machine but that didn’t work so we went back on the ventilator. That time the PICU was the worst hell I hope to ever go through with my child. We were in the hospital for 44 days and went home for two; this process was repeated 3 times.

We were discharged from Egelston and sent back to Scottish Rite for inpatient rehab…that didn’t go well. Brayden wouldn’t cooperate and seemed in pain still. We were discharged home.

We waited for his first MRI after discharge (May 2010). The day after the MRI we received the unexpected news that the MRI had not changed since January 2010. We had so much hope after that MRI – his tumor bed shrunk considerably and we were told he would probably never have to have radiation. Because there had been no change since January, we were told Brayden would need proton beam radiation. Worse yet, we were going to have to do this out of state, Oklahoma or Indiana. 

So here we were trying to adapt to another new reality in our head. Brayden had been through so much already and here we were putting his body through something else.

Brayden made it through that. He actually loved Oklahoma and still talks about “At Homa”.

His next, post-radiation, MRI remained unchanged. The only thing left to do was biopsy what was on the bottom of his spine. We prepared for another surgery. The results came back as mostly scar tissue and 5 percent abnormal cells, likely changed due to treatment.

Things are different now. He can’t walk anymore without his walker and continues to have pain in his back and legs, but we are working on those things.

Brayden is an amazing 4-year-old and I am so proud of him. He will have a lifelong battle with the side effects from the treatment. Brayden is a fighter as are all kids with cancer. His next MRI is in June and hopefully the MRI will remain stable, as that means whatever is there is not growing.

I spent eight months watching my son go through different kinds of tests, throwing up every day, very bad headaches, drinking the oceans and going to doctor nearly every day. But Dr. Bennett never gave up; that’s where the climbing began.  He referred us to Dr. Rappaport. We were told Nickolas had diabetes insipidus, which caused him to be very thirsty; it was like a drinking disease. More tests were done, including a MRI.

On December 12^th Dr. Reisner removed Nick’s tumor, a craniopharyngioma. It was near the optic nerve and on his pituitary gland. After he recovered from the operation, we were told he no longer had thyroid or adrenal glands.  My 12-year-old son, standing at 4’9, would have to take daily growth hormone injections and other monthly injections to make him a young man.

Nick’s tumor is the type that grows back and it did.  In January 2008 we learned that it had grown a small amount. The tumor is stable but to me his life is not. 

I asked God to show me a miracle and He did.  Now 18 years old and standing 6’2 tall, my handsome son is graduating on May 27^th and planning to go to GPC in the fall. 

This tumor may have prevented him from playing sports (he played them all) and left him to spend a couple of years being home schooled because of his immune system, but it never stopped him.  Financially, he deserves so much more, but his attitude is that “we are not poor; there is always someone worse off than us.”

Nick has a great sense of humor and has never met a stranger. His hardest climb is that his dad is not in his life. He does have the love of his sister, Lori; brother, Bobby; grandparents and nieces &nephews who call him “Uncle Nickel”.  He has adjusted.

I want to thank God for the knowledge he gave these great doctors, for their support and treatment. My son is my inspiration. Nick said he would rather this happen to him than his sister or brother – what amazing person. I am so proud to be his mother. So keep climbing son and when you reach the top of mountain your accomplishments will be never ending.

Nearly seven years later, it’s still Gina and horses.  She’s owned several, the one who developed a tumor and died, the one who kicked the vet and had to be sold, the one who was just lazy, and now she has what we hope is the “just right horse” – an Appendix Quarter Horse (a Thoroughbred-Quarter Horse mix). Gina does more western riding than English now.  Gina says, “It’s more relaxed; you don’t have to sit so straight,” then she cuts to the heart of it, “and you know, Mom, I like the bling.”  And she does have that bling – her show clothes, Babe’s silver-embellished saddle and bridle, and a room full of medals from first- and second-place finishes in the Special Olympics.   

She has been to Hawaii once and is going back again in September…with plans to ride horses on the beach in Oahu. She works in a theatre in East Cobb, where she is a minor celebrity. People stop us on the street, and even once at a red light, to say “Isn’t that my little ticket girl?”

Gina’s life has also changed in other ways – she has a stepfather now. Her own dad died when she was four, so for 25 years, it was just the two of us. Ellis Frost was wise enough to recognize that Gina and I were a package deal and courted us both. So for three years, Ellis has navigated “girl world” — the two of us, plus the girl dog, Taffy, and the mare, Babe. Gina, for her part, has learned that males are louder and noisier than she ever knew and that ESPN shows more than equestrian events.

There have been more surgeries, latent side effects are always a concern, and long-term, we don’t have all the answers. But for today, Gina says, “You can’t worry about cancer. You’ve got to just live your life – just live it.”