MEET MY WHY

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH.

MEET MY WHY.

Sammy was diagnosed with medulloblastoma, pediatric brain cancer, on October 19, 2016. That day started like any other day of a 4-year-old in preschool. But that day changed our lives forever. He spent the next 246 days inpatient at Phoenix Children’s Hospital. Surgeries, chemotherapy, stem cell transplant, and rehabilitation. All in hopes our child would survive. Thrive.

Sammy was finally discharged on June 22, 2017. Over 8 months after he walked in the ER. He came home a different child. Now in a wheelchair, on a feeding tube, in need of lots of support to conquer everyday life. He suffered posterior fossa syndrome, a side effect of his craniotomy. He suffered a hearing loss, a side effect of chemotherapy. Our child was no longer the child who walked in the hospital 246 days prior. But he was home.

September 1, 2017. 10 weeks after he was discharged, with clear scans free of cancer, we learned his cancer was back. With vengeance. Sammy was diagnosed as terminal. He had new growths in brain and spine. At 5 years old, less than 11 months from diagnosis, we were told our child had no cure, no hope, no chance to survive.

We hit pause. Took our family to Disneyland, before we made any decisions for what was next. We needed a moment for what was to come. Then back to the reality of our nightmare of childhood cancer. We took every day, five minutes at a time. We opted for radiation. Our best chance at giving him quality of life and giving us time.

We spent the next 6 months living life as best we could. Making memories. Hoping. Praying. That he could beat the odds. We did palliative chemotherapy in hopes to slow things down, and planned to stop, if his quality of life declined.

Sadly, in March he suffered complications from hydrocephalus. Negative pressure hydrocephalus, that was unable to be controlled. We made the decision to place Sammy on hospice care and stop all treatment. On April 12, 2018, at 6 years old, Sammy took his last breath and went into the arms of Jesus.

Somehow, here I am. A year and 5 months, since Sammy died. Our life forever changed by the words "we found a tumor" on October 19, 2016. Somehow this is my reality. This is my life. A child who fought cancer. Who died. Our family who is forever missing our child in every moment. And for Logan forever missing his best friend, his big brother. There is no going back. Only forward. Looking for Sammy everywhere, and no where. My life forever changed by childhood cancer. Scarred. I am not the person I was before, how can I be? I am missing part of my soul, my child. I have been through trauma and living through unfathomable grief. A grief with no name. No word to describe who I am as a mother, who lost. I am not a widower, or an orphan. I am a mom whose child died in my arms. And I feel his missing weight in them everyday. Forever changed by childhood cancer. I wish it was different. I wish this was not my reality.

My child deserved more. Deserved better. Sammy deserved a chance to fight and live. Childhood cancer needs more awareness, more funding and more research. Because this is not okay.

Help us DO MORE by donating in honor of Sammy to Layla's Legacy. This foundation specifically supports medulloblastoma research and supports families fighting childhood cancer.

Samuel "Sammy" Puma
1.16.2012 - 4.12.2018

#forevergotyoursix #supersammysgotyoursix #hopeforsupersammy#morethan4 #goldstrong #gogold #childhoodcancer #Godisstillgood

2019 September Book Drive

2019 GO GOLD SEPTEMBER BOOK DRIVE

Books must be NEW.

Any age children's books are accepted, but preschool aged and below are in high need.

Spanish translations of preschool books are needed.

Five easy ways to participate :
📚 Order from our Amazon Wish Lish.
https://www.amazon.com/hz/wishlist/ls/30P2JGQV19G7R
📚 Ship your donation.
Forever Got Your Six: Sammy
1300 S Watson Rd A114 PMB338, Buckeye, AZ 85326
📚 Drop your book donation at one of our local collection locations.
Chick-fil-a Arrowhead, 16657 N 83rd Ave, Peoria, AZ 85382
PostNet Buckeye, 1300 S Watson Rd A114, Buckeye, AZ 85326
Phx Law Enforcement Assoc Office, 1102 W Adams St, Phoenix, AZ 85007
📚 Send a donation for the purchase of books.
Amazon eGift Card can be sent to gogoldbookdrive@gmail.com.
Paypal link is Paypal.me/pumafamily. Please include Book Drive in notes.
Venmo link is @KristenPuma. Please include Book Drive in notes.
📚Join Sammy's Go Gold Book Drive facebook group.
For updates on our book drives, how you can help, and to read about our adventures with books both old and new.


  

WHY GOLD?

GOLD is the color for childhood cancer awareness. Our children are more precious than gold, and the truth is childhood cancer is not as rare as we would like to believe it to be in the United States. 1 in 285 children will be diagnosed with cancer before the age of 20. That means 43 children will be diagnosed today, and again tomorrow, and the next day. And by the time the month of September is over approximately 1,290 children will be diagnosed with a form of childhood cancer. And of those, 1 in 5 will not survive five years from diagnosis. 7 children die everyday from childhood cancer. So before September ends, over 200 families will join mine on the bereaved side of the childhood cancer journey. We go GOLD because those numbers need to change. Our children deserve more, they deserve better, and they deserve a chance at a full life.

On October 19, 2016, our life changed forever. I took Sammy to the ER and within hours he was diagnosed with a brain tumor. We later learned he had medulloblastoma, a form of pediatric brain cancer. Sammy spent the next 8 months living at Phoenix Children’s Hospital, while undergoing chemotherapy treatments and rehabilitation therapy. He was finally discharged in June of 2017. We had high hopes, since his scans were clear showing no cancer. In the fall of 2017, Sammy returned to start his 3rd year of preschool at the Iliad. He began his school year, excited to be back in the classroom with his friends. On September 1, 2017, during an audiology visit to check his hearing aides, we took took a detour to the ER after we raised some concerns. And in that visit we learned that his cancer had returned. Sammy at 5 years old was diagnosed as terminal. So, we made the most of what time we had left with our child. He did radiation treatments, in hopes of giving him quality of life and giving us time. We took time as a family to make forever memories, to take the adventures that Sammy loved. And Sammy continued to attend preschool, as often as he could, until he could no longer. Ultimately, we were blessed with over 6 more months with our son. Our son Sammy passed away on April 12, 2018. Our family forever changed by childhood cancer.

WHY A BOOK DRIVE?

Sammy loved books. We would spend hours reading with him, to him. We started the tradition long before hospital stays and hospital rooms of 3 books at bedtime. So every night he demanded his 3 books, sometimes begging for more. Once in the hospital, books became his escape into a world of imagination and adventure. He could not go to the playroom, as he was in isolation. He could not be with friends, due to hospital restrictions. He could not hold a crayon, as he lost motor functions. His fight caused a lot of things to him, he had a lot of side effects. So, books were one piece of normal for him. One thing that could not be taken from him, an escape that was always there. And we never had enough, despite our massive collection of books. We always needed more. We know that other warriors fighting could always use another book to help escape to the land of imagination. Books give the chance at a smile, despite what happens in that hospital room. And all the child has to do is listen to escape the room for just a moment to the land within the book.

This is our 3rd September book drive to celebrate Childhood Cancer Awareness. And hope this year is just as successful. Our goal is to collect and donate books to Phoenix Children’s Hospital that are for preschool age and younger, as 60% of all children diagnosed with cancer are under 6 years old. Phoenix Children's Hospital also does not have any learning programs specific for children under 5 years old. It was up to us, as Sammy’s parents to engage Sammy in learning during his stay, which is why books were such a huge part of his journey. We will accept children’s books for any age, but would love to focus on the preschool age group.

This year the Cancer Clinic added a Book Nook. Where each visit a child gets a token good for a visit to the book nook to pick one book. They also have a book cart that visits children who are in isolation and unable to visit the nook area. This means that they can give up to 100 books a day! The Book Nook has a high need for infant to preschool aged books, and preschool aged books in Spanish translations. Our hopeful goal is to help keep this nook stocked full of books. A week of books is 500 books. A month of books could be upwards of 2,000 books. A years worth of books is over 20,000 books!

We hope you will help us meet our goal of supplying this special area with books by donating a book (or few) today. Help us give the gift of adventure to a little cancer warrior here in Arizona.

     

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.

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.

Sammy Puma
1.16.2012 - 4.12.2018
#supersammysgotyoursix 
#morethan4 #childhoodcancer #medulloblastoma #hopeforsupersammy #supersammystrong #firstdayofschool #forever6

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

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 Courage. Damon 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.

#hopeforsupersammy #supersammystrong #childhoodcancer#medulloblastoma #morethan4 #beadsofcourage #forever6 #greymatters#gograyinmay

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