Saturday, October 5, 2019

541 days

Time does not stop. It keeps moving forward. Second by second. Minute by minute. Hour by hour. It builds into days. Then into weeks. Into months. And into years. Time never stops. So somehow, I find myself here. On this date. Here I am. Today.

Today, my son has been dead for as long as he fought cancer. It has been 541 days since I felt the weight of my son in my arms. Since I held him close. Since he took his last breath. Since he died, and my world cease to exist the way I once knew. 541 days. And it was 541 days before that, when I was holding my son in my arms in the Emergency Room. The day it all began. The day I was told my son had a brain tumor. The day that forever changed our lives, and forever shaped our future.

Today marks another moment in a series of time. Of new marks in time. It will now be longer that our son has been gone from this earth, than he lived fighting cancer. Honestly, how is it even possible? How did I get from that first day, to his last day, to this day? How did time keep ticking forward without my son in it? I want time to stop. But it keeps ticking. Second by second. Moment by moment. Never stopping, not for anyone, for anything.

Here I am. I am on this ride and I want off. I want off this damn ride. The nightmare never ends. I want to wake up. The world is so disorienting. I feel like everything has been shifted. And the ground will not stop moving long enough for me to get my balance. Everything is spinning. Just spinning. I can not put my feet down because there is nothing solid to stand on. I want the world to slow down, and yet it seems to keep speeding up. I am still just trying to breathe.
For the first year of grief, the goal was to just get out of bed every day. To remember to eat. To try to sleep. To attempt to care for my surviving son. Something I had little choice in accomplishing. He needed me. Just because I had no energy, did not mean he did not need me. And it was exhausting. Just breathing felt like work. And time did not stop or slow down, just because I felt like I died when my son died. I had to keep moving. If no other reason, than life keeps moving. And I had no choice, but to attempt to keep up.

The reality of child loss is there is no one to care for anyone. My husband is hurting. My son is hurting. Everyone is hurting. Everyone is grieving. The grief does not stop. And it impacts every person of the family. Because it is a child. My child. Our child. Everyone is just trying to not drown. Everyone needs to be rescued. But there is no one to rescue us. Because everyone in our family is drowning. Each of us just trying to come up long enough for another breath of air.
No one made sure I was going to make sure I had food to eat. Or a shower each day. Or that I was engaging our living child. Ultimately, once again I had no choice. And many days I failed. Failed at just those few simple tasks. Many days the only thing I accomplished was the bare needs that our living child required from me. Most days it was just dragging myself out of bed to get him to school and pick him up. Throwing him an iPad or flipping on the TV, and letting Netflix doing the parenting. Meals were of simple demand. PB&J. Noodles. Rice. Fast food. Anything that did not require my time. Or focus. Or effort. Because I could not muster the energy it required to do the simplest of tasks. Everything was overwhelming. Breathing was overwhelming. Grief swallowed me whole. I skipped meals. I skipped showers. I skipped brushing my hair. Each and every task was a huge weight that took more effort than I could bare to give. I was exhausted from just breathing.

I have spent the better part of the last 18 months battling depression, anxiety and PTSD. Yet, my responsibilities have not changed from the day before our son died. Or from the day before he was diagnosed with cancer. They were the same then, that they are now. And there is no one to do it all for me. My spouse is suffering, just as I am suffering. Our child is suffering too. We are all spiraling, spinning. Truth is no one wins when a child dies. Because we are all struggling to survive, one day to the next.

I have spent the last 18 months failing. Failing at finding myself support. Failing at finding support for our living son. Failing at finding our family support. 18 months of floundering. Some of it was because it took so much effort, I gave up. I would hit a wall, and could not muster the strength to go around it, or over it, or through it. So the wall stopped me. And it took time for me to regain the strength to fight forward. To have the ability to keep calling.To keep fighting. To keep questioning. To keep turning over every leaf until the right one was found. 18 months. But the truth is, is should not be this hard. None of it should have been this hard. I should not have had to feel like I was climbing Mt Everest to get the right support in place. It should not have been so overwhelming. It should have taken a few calls at most. I have made hundreds. Truth is, it should NOT be this hard to get support in place for autism, for grief, for trauma. For our son, for us. It should not be this difficult. Life should not be this hard. I should not have to advocate this hard to find help.

Nearly 3 years we have been trying to get some of these supports in place, and we are finally starting to find the right things. But they are still not perfect or all in place. I am still floundering. It is all just so hard, and it sucks. I have lost my mama bear fight. I have lost my roar. I feel like I fail everyday. And I need someone to help. Truth is no one will fight for us the way I once did. I fought for years for our son before cancer. For autism, for his cognitive and developmental delays. I advocated for 3 years before cancer. It was a challenge then. But it should not be this challenging to find the therapies and support any family needs. It should not be this hard. It is extremely difficult under regular stress. And I wanted to give up over and over again back then. But with grief, it feels impossible. And I did give up. It has taken me years to do what once took me months.

Nearly a year ago, our living son was officially diagnosed with autism. I still have nothing in place for him support wise. He has no therapy in place. We have not gotten any of the services in place. We keep hitting walls. With referrals. With finding providers. With insurance. We are finally starting to get our answers. To find the right places to get support in place. But I feel like a failure because it took so long to get any of it in place. Or to just get to this point where we still have a long way before care is actually given.

I know I am not a failure. I know that I am doing the best I can under extraordinary circumstances. But the world does not know that. The world does not know that it feels like a 5 mile hike, just to shower. Or planning an afternoon outing feels like I am planning a 3 week long vacation. That cooking dinner feels like I am planning a dinner party for 20. Everything feels distant, overwhelming, and difficult. I am isolated because it is hard to maintain friendships. Friendships have significantly changed in the face of all we have endured. Partly because I could not give what most wanted from me. I could barely just do me. And most can not handle the reality of my life. Our life. So life has become very small, isolated. And yes, it feels like we are abandoned. To others it seems our worst is over. But that is the lie. The worst is living everyday without the person who should be by your side. Living everyday in wonder of who that child would become, who he should have been. Living each day with hole in every photo. The place our child should be standing. Knowing that to everyone else we are a family of three. But we are not. We are a family of four.

My faith has gotten me from one minute to the next. But my faith does not make my pain gone. The hole gone. It makes it possible to live. And have hope that one day I will see my son again. It helps me to not question why. It helps that I know each day is God’s and not mine. But none of that magically takes away my suffering. Even Jesus wept. He knows suffering, and pain. And while it brings me comfort. Faith is not a blanket that heals the suffering, the pain. The void will always be present in my life. Knowing our living child should not be an only child, but should be a younger brother. And while he may not always be an only child, there is no replacing his big brother. There is no child to fill the hole that is meant for our son who died.

So here I am. 541 days since our son died. I have lived those days without my son by my side. The same number of days I lived hoping, praying, comforting, holding him while he fought against cancer. We have now lived as many days without our son, as we lived the life of trauma because of cancer. And one day, not too far from here we will live as long without our child, as we lived with our child.

Samuel “Sammy” Puma is my child. Forever my child. There is no hiding from my grief. From my greatest loss. There is nothing that can be said in speaking about memories of my son that would hurt. Or cause me sadness. The only thing that hurts is feeling forgotten. Feeling left behind. Feeling like our son will fade and his life had no meaning, no purpose and that he will not be remembered. Sammy is my child. Forever my child. I will forever mark his place in our family. Because he belongs. And Sammy is mine. Ours. Our child forever.

Wednesday, September 4, 2019



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


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.
📚 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
Paypal link is 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.


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.


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.

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.