Tuesday, March 12, 2019

Fighting words and cancer battles

What does it mean when we apply the term “win” to a battle with cancer? What does that imply when it doesn't go that way, when the cancer won? The person failed? They didn't fight hard enough? I have seen some pretty ridiculous commentary, that if you fight hard enough, anyone could survive. And well those comments nearly break me, every time. I have to step away. And cool myself. Because the reality is, THAT IS JUST NOT TRUE.
We wanted Sammy to beat cancer, conquer the beast, slay his dragon. And now I feel we failed him. We. Were. Wrong. We used the wrong language. And the language needs to change. But honestly far more needs to change, than just the language used in a battle with cancer.
Really thinking about it. When a soldier goes to war and comes back, but his buddy does not. We don't tell him you won, he lost. Ultimately, they are fighting the same battle. One of them just didn't survive. And the survivor might be injured, have life long damage, suffer ptsd (post traumatic stress disorder), deal with survivors guilt, and the list is long. They may be alive, but I wouldn't say they are always lucky. Then the other lost to the battle, lost to war, killed in battle. Are declared killed in action. They didn't give up. They just didn't have the right tools to keep them safe, to help them survive. But they didn't lose. And survivors didn't win. There is JUST death and life. The two outcomes of war. The two outcomes of cancer. Yet, we say “win the fight to cancer”. So when the fight is in the end, and cancer has “won,” did they lose? Was it their fault?
Sammy went to war with at best a 50% chance at 5 years survival. But add in his age and specifics of his disease, his outcome was grim. He was a martyr. He was sent into battle without the right armor. Without the right weapons. He was was facing a monster with outdated treatment, a monster that is under funded and researched.
Ultimately, Sammy finished the race against cancer. He fought hard. He fought to survive. He fought for his life. And he gave everything, sacrificed everything, including his life. He was KILLED IN ACTION.

In cancer, there is only one victory. A cure for all cancer. When no lives are sacrificed. When no lives are maimed. That is the ONLY win. Period.

Friday, August 17, 2018

August 17, 2018 : Kindergarten

I was hard pressed for words earlier this week. It was hard to breathe as I processed the moments that passed. I sat in tears as I assembled the letter board marking this big missed milestone. Arranging and rearranging the letters. Wondering if I should mark this day. But it is an important day. And I finally found a few words to share.
As back to school happens consider those around you. On Monday, August 13, 2018, Sammy, should have started Kindergarten, but he never will. He will never pick out his first backpack. He will never bring home homework or sit at our kitchen table frustrated by it. He will never breeze through it either. He will never miss the bus. He will never forget his lunch box or lunch money. He will never fail a test. He will never make honor roll. Or get an A+ on the test. We will never meet his teacher. The moments of frustration or moments that make us proud will never happen. We miss them all. Our son never finished PreK.
If you know a family like ours celebrate them. Let them know you remember their child. They want to hear their child's name. Send them a note. Donate in honor of their child and let them know. Help them capture their should-be memory, as hard as it is, because they may want to celebrate it. For us, this moment is the first day we were supposed to let our child fly on his own. Kindergarten. And it never came, it will never come for him.
3 years ago Sammy entered preschool. We got one good year of preschool, one year of school memories. He had autism, so we had a plan in place for 3 years of preschool to help him prepare for kindergarten. 5 weeks into his 2nd year of preschool, on October 19, 2016 he was diagnosed with brain cancer. Medulloblastoma. He spent 246 days in the hospital, being discharged June 22, 2017. He returned to preschool last fall, only to relapse 2 weeks into the school year on September 1, 2017 to a terminal diagnosis. He attended school as often as possible, which was not often at all. He maybe attended 30 days total last school year, between radiation treatment, bad days, and our family taking adventures to always remember. He passed after a long fight on April 12, 2018. 6 weeks before graduating PreK. Sammy is forever 6 years old. We have a lifetime of missed milestones to remember ahead. And we pray our friends and family help us through them.

Tuesday, June 12, 2018

June 12, 2018 : Bella

Meet Bella, Sammy's dog. She officially joined our family just under two weeks ago. Back in January, Sammy began saying he wanted a dog. We took regular visits to various pet stores (shelters were too overwhelming for him) to visit with puppies. He kept asking. So we started the process of finding a new dog for Sammy. Enter Bella. We knew Sammy wouldn't get much time with Bella, but we were hoping he would get some. Sadly, that is just not how things worked out for our family
. Sammy did spent several visits with Bella before he died though. And was very excited about his Bella. Picture is of a visit with her mid March. Bella's trainer even brought her to Sammy's celebration of life service. When we started this, we decide we would continue the process of homing Bella, even if Sammy wasn't with us. So here she is and she is home. Bella is a wonderful addition to our family. And Logan absolutely loves having Bella, as seen in picture of them sharing a blanket. We are hoping she will be a great support for Logan, as we sort through the things impacting his life. 

#SammysBella #hopeforsupersammy#supersammystrong #childhoodcancer #medulloblastoma#childhoodcancersibling #morethan4 #germanshepherd #servicedog

Thursday, May 31, 2018

May 31, 2018 : Beads of Courage part 2

Sammy fought brain cancer for 541 days. This strand of beads represents his battle, his Beads of CourageDamon Cole of Heroes & Cops Against Childhood Cancer is standing at the end of Sammy's strand of beads, for perspective. His strand holds nearly 1,900 beads. Each one a moment where he was brave, he was courageous, he was strong. Each a moment he fought for life. Some represent joys in his journey, like the silver origami crane which marks his Make-A-Wish America being granted. Or the bead for his discharge after 245 nights in the hospital. Or the bead for his 6th birthday, a birthday we weren't sure he would celebrate. Or the glass hot dog bead we picked for his first Arizona Diamondbacks game after 8 months hospitalized. Or the bead for the first time he laughed after brain surgery. For each joyous moment, there are so many more that represent moments of true strength during his struggle. Moments of pain, moments no child should endure. From his first bead, a magenta bead for his ER visit on October 19, 2016. To his last bead, a butterfly for the moment he flew to heaven on April 12, 2018. 541 days, each moment marked by a bead.
60 white beads, each one for a chemotherapy drug given.
5 glass stars represent each surgery, the first being a 10 hour brain surgery.
253 yellow beads, one for every night spent at Phoenix Children's Hospital.
47 red beads for each time he received a life saving blood or platelet transfusion.
48 pink beads, showing each time he was put under anesthesia.
453 rainbow beads, one for every therapy session he endured.
29 dark blue, for each visit to the outpatient clinic.
5 face beads, for the three times he lost his hair and the two times it grew back.
28 round spotted, each for a day of proton radiation to his brain and spine.
282 purple, one for everyday he got IV infusions.
114 black, one for every needle stick/poke he endured.
These are just a handful of the numbers, the moments. This is Sammy's story, one bead at a time.

Wednesday, May 2, 2018

Samuel "Sammy" Puma 1.16.2012 - 4.12.2018

Samuel “Sammy” Puma, 6, of Buckeye Arizona, went home to heaven on April 12, 2018 after an 18 month long battle with medulloblastoma (brain cancer). He passed peacefully, surrounded by the love of his family.
Sammy entered the world on January 16, 2012, bringing joy to his parents and family. In April of 2015, Sammy welcomed his little brother Logan into his world, and immediately grew into an amazing big brother. Sharing his world with his little brother, and a love only brothers could have for each other.
From a young age Sammy loved adventures. In his short life, he was blessed with adventures from coast to coast during the numerous road trips taken with his family. Sammy loved his home team, the Arizona Diamondbacks. Each game at the park being a new adventure, filled with hot dogs, popcorn and of course a visit with D. Baxter.
Sammy lived life surrounded by lego builds, reading books with his parents, watching Ryan's Toy Review on YouTube (among other favorites), and running around with his friends at taewkondo and school.
During Sammy’s battle with cancer he became known as Super Sammy, although Sammy was no stranger to being Super Sammy. At age 3, Sammy was diagnosed with autism and began to learn a new way of life. He always took each day head on, living with his challenges instead of the challenges limiting his life. Cancer just became another challenge to conquer and overcome. Sammy spent his life demonstrating courage, resilience, strength, and living life to the fullest.
Sammy is survived by his loving parents, Charles and Kristen Puma, and his beloved brother Logan Puma, also his grandparents, Lori Scharnagl, Julian and Kathleen Puma, and many aunts, uncles, cousins and other relatives who loved Sammy deeply. As well as the numerous warriors standing with him during his fight against medulloblastoma. Sammy was welcomed by his grandfathers Dave Blanco and Albert “Bud” Scharnagl as he entered his eternal heavenly home.
Sammy’s Celebration of Life will be held on April 20th at 6:30pm at Desert Hills Baptist in Buckeye, Arizona.
A second Celebration of Life will be held on May 5th at 10am at Westminster Presbyterian Church in West Chester, Pennsylvania, followed by his burial.
Donations can be sent to Kristen or Charles Puma for Super Sammy’s Got Your Six, a foundation being created in his honor. 1934 E Camelback Rd #120-239, Phoenix, AZ 85016

Wednesday, April 25, 2018

April 25, 2018 : Reality

Reality. Every moment somehow manages to be harder than the last. The frozen moments of the last 18 months. Me learning to breathe again despite the absence of air. Being told my child has a brain tumor. Finding out it is cancer. Fighting through the horrible side effects, knowing my child may never be who he was before. Living in a hospital room for 8 months. Learning the cancer is back, a relapse. A terminal relapse. Never knowing how long my son has left, but knowing the answer is not long enough. Begging God to end the suffering of my child, either by miraculous healing or taking him home to heaven. Telling my child it is okay to die. It is okay to rest, to be free of pain, of suffering. Holding my child as his last breath left his body and heart gave it’s last beat. Knowing I will never feel his heartbeat again. Placing my lifeless child on a gurney, and having to let go. Leaving to go home with an empty car seat, holding his favorite blanket, the last thing he touched. Picking out his casket, a 4.5 foot casket. Looking in his closet deciding what he should wear for eternity. Holding his Arizona Diamondbacks jersey, knowing it's the one. The one he wore to his last Dbacks game last fall. A shirt that bought joy every time. Determining what to place with my child forever. His daddy blanket, the aviator Baby Tulablanket he clung to since daddy left for basic training in Spring of 2016. That gave him comfort for 2 years, rarely leaving his side. His stuffed Taco Dragon from his favorite book Dragons Love Tacos. A beloved LEGO police car. For all the Legos that always surrounded him. And lastly Daddy's Police badge, because our son is our hero. Letting each item go, forever. Placing them forever with our son. Seeing my child one last time. Him being honored by Superman, a police officer. Damon Cole (Heroes & Cops Against Childhood Cancer) standing for our son, honoring him one last time in a way only fitting of a hero. Seeing my son in his casket. My son, my child. Cold. Lifeless. Dead. Each moment somehow worse than the last. My arms forever empty, but my heart forever full.
6 years was not enough. A lifetime would not have been enough. But Sammy was never ours. He was always the Lords. Each day a gift. And each moment I’ve been met by God, carried by God. He is my strength, my courage, my hope. He will continue to carry me through the breathless, airless moments I will face in the days, weeks, months and years ahead. Especially as we prepare to lay Sammy to rest with his Grandfather in the week to come. Having to leave Sammy's earthly body in PA and returning to AZ without him. My strength is not mine, but the Lord's.
I may never know the why of this horrible journey, but I will continue to trust that God will create the most beautiful rainbow out of my storm, out of the horrors of this journey. I have faith that God is not finished with Sammy’s story. That His story is greater than anything I could imagine. And because of Christ, I have hope. I know that one day I will be reunited with my Sammy, for eternity. And what a glorious reunion that will be. My heart is broken, and may never be whole again until that day. As there will always be a piece missing. A piece with Sammy, taken to another place. A place called heaven. But one day my heart will be whole again because of Christ.
And while my heart continues to grieve, it is also full of joy knowing Sammy is FREE.

Monday, April 23, 2018

April 23, 2018 : Beads of Courage

Sammy's Beads of Courage. A few beads shy of 1,900 beads. Representing his 541 day fight with brain cancer. From walking into the ER on October 19th, 2016 to his last earthly breath on April 12th, 2018. Each bead has meaning. Each bead stands for a part of his journey. Each holds significance. These are his Beads of Courage.
253 yellow beads, one for every night in the hospital.
44 light green beads, representing the 44 scans done.
47 red beads, one for each blood transfusion.
60 white beads, standing for each dose of chemotherapy given.
453 rainbow beads, one for each therapy session accomplished.
114 black beads, each one a stick, a poke that Sammy endured.
So many moments of COURAGE. Nearly 1,900 moments. Roughly 61 feet of beads, from end to end. Weighing 6 pounds.
My Sammy was brave, courageous and strong till his very last breath and last beat of his heart. I am so proud of him. And so joyful he is now dancing free in heaven. Free of the weight of what these beads represent.