Wednesday, September 4, 2019

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







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.