By a show of hands, how many families here have been touched by Cancer?
How many families here have a child that is battling cancer or have lost a child to cancer?
How many families here have lost 2 children to cancer?? What about Three?
I have lost 3 out of 5 of my beautiful children in the last 5 and a Half years to brain cancer.
•Cody Michael Mading our oldest, loving, strong willed, faith filled, courageous son passed away in August 31, 2010 at age 17, from brain cancer
•Averi Marie Mading, my kind hearted, beautiful inside and out, social butterfly and Faithful daughter passed away on December 24th, 2013 at age 17 from brain cancer
• Isabella our baby girl..our youngest, wise beyond her years, our brave little girl who spent most of her precious years on this earth, in and out of the hospitals with her brother and sister, watching helplessly as her brother, Cody and her sister, Averi both took there last and final breath...
Isabella who dreamed of becoming a nurse one day, so she could help others...passed away exactly 5 weeks ago today at Children's Hospital of Pittsburgh, on Saturday February 6, at the age of 10.She was surrounded by her sisters older sister's Kylie and Olivia, close family members and her favorite doctor in the entire world, my hero NeuroOncologist, Dr. Gary Mason.
Just saying those words here today still seems sureal...it's still so hard to believe to accept that she is really gone.
Just 6 and a half short years ago...I was a married, stay at home mom to five beautiful children. We were just a normal family who went to church every Sunday, lead youth group on Wednesday nights, drove our children to all the different
Activities they were involved in...and as a family NEVER touched by Cancer....I never thought In million years, our life as we knew it would be shattered into a million pieces, On September 28th 2009, the day we were told by our sons Neurosurgeon," Mrs Mading I am so so sorry Your son, Cody has the most malignant, aggressive brain tumor I have ever seen."
Cody, Averi and Isabella never said, Why me"? Even though that is a completely normal and understandable question to ask God while your are fighting every second, every minute for your life against this terrible beast called Cancer. They all 3 fought with unwavering faith, courage and hope. They were not scared to die, they new exactly were they were going...heAven!
I have to say, I have not asked, why me, why us, why our children
Instead I think, why not me, why not us.....and Most importantly
WHAT can i do to make sure no other family and child has to endure the suffering, hopelessness and unfathomable pain caused by losing a child to cancer!
That is why I am here today...to fight for the heartbroken families battling cancer right now...to fight for the children and families of the future, that will be blindsided when they hear the excruciating, umagiable words "I'm so sorry, but your child has cancer"
We brought Isabella to Pittsburgh children's Hospital, in March of 2015, after being diagnosed with Glioblastoma and having her tumor fully resected at All Children's in st Petersburg Florida. We knew Pittsburgh childrens hospital was rated, one of the top hospitals in the United States and had access to additional treatment options that were not available in Florida, And knowing Isabella's chance of survival was very, very slim unless we could somehow find an Onclogist that would listen to our story, think outside the box and fight alongside us to save our daughters life.... And we did, that day, by divine intervention we were introduced to Dr. Gary Mason. There are many oncologist that have never heard of, or treated Cmmrd
Impressivly, Dr. Mason knew a lot about CMMRD, he was aware of the certain chemotherapy drugs that should be avoided with patients with Cmmrd. He also knew of the cafe au lait spots children with Cmmrd usually have and that this syndrome was frequently misdiagnosed as NF1. Most importantly, Dr. Mason knew that there was no protocol or cure for children diagnosed with Cmmrd, and to save Isabella's life he needed to think outside the box....and that's exactly what he did! Dr. Mason contacted Dr. Uri Tabori an Oncologist at Sickkids hospital in Toronto Canada. Dr Tabori has been researching this childhood disease and was beginning to see success with immunotherapy drugs. Knowing this was the only hope Isabella had, dr mason worked with Dr uri Tabori, to find out everything he needed to do to get access to the Pd1 immunotherapy drug, since there were no clinical trials available.
Dr Gary mason spent hours of his time, pleaded with Bristol Myers Sqibb to kindly give Isabella access to nivolomab. He put his heart into getting nivolomab approved for the compassionate use through the FDA. And finally he met with the institution, to get the final okay from the hospital, to administer the medication to Isabella.
Isabella had her first dose of PD1 on October 31, 2015. As expected she began to have a rapid neurological decline... Due to the swelling/inflammation caused by the immune system attacking the tumor. We expected it to subside in 4-6 weeks, as it did for the few other patients that were treating in Canada. On November 30th after her 3rd treatment, Isabella was airlifted to chp, unresponsive from the extreme swelling in her brain. They performed emergency surgery, giving a bone flap to relieve enough pressure to save our precious Isabella's life. Dr. Mason continued to do everything in is power to give the pd1 immunotherapy time to work. In the end, we got 2 more precious, unforgettable months with our little girl. And our 2 oldest daughters, Kylie and OliviA who have lost so much, spent every single day of those last 2 months sleeping, sitting and being next to their sisters side, a time Kylie and Olivia will never ever forget.
My precious Isabella, against all odds, made it to her 10th birthday and had the birthday party she had been dreaming of and talking non stop about for the last 9 months. She blew out the candles on her frozen themed birthday cake, she felt the snowflakes falling softly on her face as she playfully threw snowballs at her sisters, giggling with a beautiful peaceful happy gleam in her eyes.
So What is CMmrd
Cody Averi and Isabella suffered from a genetic childhood cancer predisposition syndrome called Constitutional Mismatch Repair Defiency or Cmmrd. This syndrome is caused when both parents carry the same genetic mutation on one of the Mismatch repair genes ( which is called Lynch Syndrome) MLH1, MLH2 MSH6 and as in our case PMS2. We had no idea either of us carried this genetic mutation or that Each child we had, carried a 25 percent chance of inheriting both mutations that would cause 3 out of 5 of our children to inherit this highly aggressive, devastating childhood cancer predisposition. I have been asked, if I had known Ben and I carried this mutation before we had five children, would you still have had children? And my answer is...I can't go back in time, I can't change the past but I will forever cherish for the rest of my life... every single solitary moment I was able to spend on this earth with my beautiful children Cody, Averi and Isabella. They each taught me so much about living, what's really important in life, not to fear death, it's only a passage into heaven, that God truly does exist,and that life is not about the number of years you live, it's about the way you live it to the fullest every single day, while you are on this earth. And I will be forever grateful to God, for choosing me to be their mother
I cannot even begin to find the words to express how unbelievably grateful we are for thechildren's hospital of Pittsburgh and every individual nurse, doctor, surgeon that stood beside us, cried with us, fought with us, prayed with us and most of all thank you for the unconditional love and kindness that you gave to our brave little girl the last year of her life. And lastly, thank you Dr Gary Mason, I have never in my life met such an incredibly dedicated, sincere, warm and kind hearted oncologist who isn't afraid to think outside the box, or fight with everything they have....for the love of a child, a family that you had only known for 11 months.
Thank you everyone for being here today supporting St baldricks and Children,s hospital of Pittsburgh in there quest to find a cure for childhood cancer. I would like to end with one of my favorite quotes by mother TeresA
I can do things..., you can do things, but Together we can do great things!