Tuesday, November 3, 2020

Survivor Clinic

When I was a little girl I had many dreams, and although the scope of those dreams were ever changing, the base always remained the same. A happy life, a healthy family, loving husband, and children to carry on our family name. December 14, 2011 my journey in life took a drastic turn. My 18 month oldlittle boy had been demonstrating small struggles, his gait was off, shaking when he woke in the morning, and being a new mother, all of those signs flew past my radar as dangerous, they were simple things that toddlers do. But a visit to his pediatrician, an emergency CT Scan, ambulance ride to the medical center, and a ten night stay at Texas Children’s Hospital’s ICU Unit changed that concept in an instant, with six little words…”Your child has a brain tumor.” They are words no mother ever expects to hear, it happens to other people, not you. My faith in God began to fall, why him, why us, why me, why a child? And despite my constant prayers and questions, no answers came, only little miracles God would send to let me know that it would all be ok, because it was his will, not mine.


His official diagnosis is a Pineal Pilocytic Astrocytoma, a very common brain tumor in a very rare location. Only 2 reported cases of his type are reported each year. Surgery was risky, radiation was damaging, so we drained the fluid off of his brain and waited, a year. One year of watching this monster grow in his brain and finally the medical team decided to begin chemotherapy. A port was placed, treatments began, hair fell out, tears flowed down faces, and the chemo did nothing. The next step was a brain resection, they went in and removed 95% of it. 3 months later, it had doubled in size again. Proton radiation at MD Anderson seemed to be our last hope, and that is where our lives began to turn around. It worked, the tumor began to shrink, and stabilize. It is still there in his brain today, in the back of my mind before every brain scan, as we watch and wait to see what this invader is doing. In March 2020 we were supposed to be moved to the long termsurvivor clinic, but they spotted a small abnormality on his scan, so again, we wait, we watch, and we pray. And the prayers were answered, In October 2020, after 9 LONG years, we were given clearance to join the Survivor Clinic. I know God has big things for this little boy. He met every visit to the hospital with a smile, a life in the hospital was all he knew. If you could meet him you would understand, he has wisdom, compassion, love, to simply put it, he has an old soul. 


In the past 9 years our little boy has endured 2 Brain Surgeries, 18 months of Chemotherapy, 6 Weeks of Proton Radiation, and 100’s of blood draws, MRI’s, CT Scans, Physical Therapy, Occupational Therapy, Speech Therapy, ABA Therapy. He had to learn to talk again, to walk again, to be a little boy again. Each moment broke my heart, would my child ever be normal? I was mentally, physically, and financially exhausted. And the answer was no, this WAS our new normal. So, I embraced it, the only way I knew how, to give back. 


One of the gifts that Bennett received during his very first hospital visit was a Build-a-Bear. It was the first time in days that I was able to see him smile. I wanted every parent to experience that moment. It filled me with hope, it was one of those little miracles I needed to see, that EVERY parent deserves to see when their little one is in that hospital bed. I told my husband that if we were blessed enough to leave that hospital room with our little boy, we would do something to give back. We left with our little boy the day before Christmas 2011, and on that day Bennett’s Bears was born. Since that day, with the help of generous donors, we have been able to donate over 14,500 Build-a-Bears to pediatric cancer patients and children with other illnesses throughout the State of Texas.


I ask myself today, how did my son’s cancer alter my relationship with God? In truth, it never altered, it may have trembled, I may have lost contact for a while as my anger consumed me, but the love I had for God never changed. Too many times I had to explain to my little boy why his friend with cancer was dying, but he was still alive. I had to explain to him that God chose for him to live, to be here to make our world a better place, to make me a better Mommy, to instill hope in those still fighting. I became angry at God for a very long time, but I always knew that when my tears had dried, and the anger had fallen away, he would be there to hold my hand and lead me from the ashes I had buried myself in. God was my salvation, God IS my salvation, and God WILL be my salvation each and every day. 


If you can take one message away from what I have said to you today, let it be this: Be the Change, be the voice, be alive, embrace all God offers you, the bad and the good, because one day my little friends, it may be you telling a story similar to mine, and I want you to be as prepared as you can be.
Each time Bennett gets into an elevator he knows everyone’s name, age, and favorite color before it’s time to disembark. I think we all should live our lives like that. 🤍
Thank you and God Bless.

Wednesday, October 7, 2020

MRI 10.07.2020

Today we arrived bright and early at TCH Main Campus for his follow up MRI. Back in March they found a small blip on his MRI so they post poned him moving to the long term survivor clinic. Let me tell you, having a child with cancer during a pandemic is a nightmare. But it was coming to the hospital that gave me a reality check. Security checkpoints, only one parent allowed, COVID pre-testing prior to procedure. Sheesh. Even the elevators are locked down to employee access only. I am wearing my TCH jacket today, I think half of them assume I work here... I probably could at this point. Bennett’s anxiety level today was higher than ever, lots of tears, lots of deep breathing to calm down, but ever so brave. When we finally went back to the machine room for him to fall asleep I asked him if he wanted to hug me, he said no mommy, I can do it. I know you can buddy, sometimes the hugs aren’t for you, they are for me. So now, waiting game.... sitting in the waiting room for them to call me back. Oncology Appointment right after this. Long day at the hospital, just him and me. I’ll update more later... -B 
Update: Scan went well, Dr. Rednam found that there is no tumor growth, still stable, so we will be moving to the Long Term Survivor Clinic. I’ve waited for this day so long. Thank you God, thank you friends and family who have been there for us every step of the way. Today is the first day of the rest of his life. 

Monday, March 16, 2020

Spring Break 2020

We took our Annual Spring Break Cruise to Cozumel, Mexico again this year! :) Bennett brought along his best friend Gavan, and they had the BEST time. Waterslides, Snorkeling, Paddle Boarding, Ice Cream, Hot Tub, Movies...and all the food they could eat. Boys being boys, and it was just beautiful seeing him be a KID. :) There is the Corona Virus going around right now, so we were one of the last cruises allowed to embark on our cruise...thank goodness! Mexico was alot of fun, can't wait til next year! Hopefully we get to do a Disney Cruise, he has been begging to go on one.

MRI 03.11.2020

Well today we had our usual MRI to see what Bennett's brain tumor is doing...it is not exactly the news that we were anticipating, but it is something that will hopefully turn out to be nothing. He had extremely high anxiety today about going on the "space ship" for his MRI. It breaks my heart that he has had to endure so much. The main tumor is stable, but they have found a small punctate lesion on the outer perimeter of the larger mass, so...we will continue with another MRI in 6 months and just watch it. Praying that it stays stable and that it is nothing to worry about. His oncologist feels that it is small enough to not worry...but with Bennett's history we can't be too careful. I meet with his oncologist early April and will update everyone then.

Cruising Into the Double Digits

It's crazy to think my little miracle has been walking on this earth for a decade, but he has! Bennett is 10! We celebrated in style...a swimming party at Aunt Shelf and Uncle David's house, complete with a cruise ship cake and his closest friends. Thank you to everyone who made the time to come and celebrate our little boy with us, it truly meant the world...6 years until he drives...Lord help me. HAHAHAHAHAH!

And just like that....it's 2020

This is the year Bennett turns 10, this is the year we wish for a change. We promised ourselves that if Bennett made it 5 years stable with his brain tumor we would try for one more...give him a sibling. That 5 year mark is February 2020. We are making good on that promise, and we cannot wait. He will be an AMAZING big brother. He has such a big heart and not quite sure who to give it all to, so I know that giving him a little brother or sister is the right thing for our family, for him...because lets admit it, my life is for him. His happiness. So here is to a year of change, big things, and brilliant light for us all!

Thursday, December 26, 2019

Christmas 2019

Christmas this year, like each year, seems to have come and gone so fast, a quick little spark of merriment and joy. Bennett was on the nice list and got EVERYTHING he asked for. Not sure we will be able to do that next year, but as long as we can, we will. That little man deserves everything his little heart desires. 2020 is right around the corner, and with it brings new challenges, and we are ready for them! Happy Holidays!