“I’ll never forget the night we got the call. My husband had just left to go to the store for diapers for Big Sis since we had her all day while Mom & Dad were at the hospital. Mom called me and asked if we were all together. I knew something was wrong but kept telling myself it wasn’t as bad as what I was thinking.
There’s no way our 7-week old grandbaby had cancer. I went upstairs where our #2, 3, and 4 were and I called them into the hall. (Our youngest was downstairs and we called her up later). We waited with bated breath as Mom said the words, ‘It’s Leukemia.’ I immediately screamed, ‘NO!’ repeatedly.
Our son, the oldest of the siblings at home, took the phone as I fell to my knees and was comforted by the other two. At that moment, every nightmare scenario we faced with my mom during her 7 years of battling Lymphoma came back to me.
I knew I didn’t want to watch my granddaughter, an innocent baby, go through things I watched my mom endure. We called my husband to come back home ASAP. When he arrived, I could barely speak and definitely couldn’t get out the word, ‘Leukemia.’
I called my sister and she knew by the sound of my voice what it was. She too screamed and her husband soon picked up her phone. Our oldest daughter had to receive the news alone in an ER room while her husband waited in the parking lot due to COVID. The three of us experienced PTSD with the diagnosis as we remembered everything we walked through with my mom as her caretakers.
The memories of this day with Avery will forever haunt me for a hundred reasons. I felt like I failed my children. I couldn’t be strong for them at that moment. When I should have been holding them up, they were quite LITERALLY holding me. Once we all got our bearings and the realization set in, we told the rest of our immediate family and made the decision to tell the world through social media.
Why share Avery’s story?
Watching my mom endure a 7 year battle with Lymphoma, we understand the world of cancer, particularly blood cancer, better than most. Fortunately, most people don’t live in our world. They don’t have to face this diagnosis. As a matter of fact, in Avery’s particular case, she is only ONE of 400 babies diagnosed last year with infantile leukemia.
But, every 3 minutes, somewhere in the world, a family hears the life-changing words that their child has been diagnosed with some type of cancer. There are 12 types of childhood cancer and hundreds of subtypes. I’ve walked this journey hand-in-hand with a friend whose 5-year-old son was diagnosed with DIPG 10 years ago. DIPG has a 10% survival rate. We lost him in March 2011.
We wanted to share to bring awareness to the heartbreaking reality behind childhood cancer. But we also wanted to educate and inform others. To let you know that behind these statistics are REAL people. RAW emotions. HEART-WRENCHING days.
But, we also found, especially during a pandemic, that the best way to get the word out to our friends and family was through social media. Text chains were getting too long and exhausting to keep up with. Honestly, we’re so glad we chose to be fully transparent during our walk with our online community.
They have become our biggest supporters. From as far away as Australia, Brazil, Portugal, Canada, and here in the states. We have a team of cheerleaders watching for updates, sending gifts, and simply encouraging us with their comments and messages along the way.
Truth be told, some days, it’s our online friends, mostly strangers, that keep us going. We don’t have a ‘boots on the ground’ team beyond the ten of us. We, as a family, have given up more than the average in order to keep Avery safe during a global pandemic. Personally, I haven’t been in a store or restaurant since March 14, 2020.
I stay home, without seeing any family and friends, so I can go spend nights at the hospital to give Mom & Dad a reprieve. My husband and I remain safe so we can have weekly sleepovers with our granddaughters.
We also want to stay healthy so we can keep Big Sister anytime we need to while Mom & Dad care for Avery. Out of the 10 of us, all but Avery, Big Sis, and Papa (my husband) are actively in or seeking therapy. This entire situation has taken its toll on our already fragile mental health.
Not to mention, from what I’ve seen over the past 19 months from many people in my life who call themselves ‘Christians,’ it’s even hard for me to continue to relate to that way of life. We’re all so tired of people telling us, ‘God will heal Avery.’
Do you know how many children die each day from cancer? We see it daily in our world. Finally, we prayed for over 7 years for God to heal my mom from cancer. He never did. So, please forgive my cynicism with that thought process right now.
Do I believe in God? Sure.
Do I believe in Science? Yep.
I also believe they can co-exist. But, I also believe people, children, babies can, and do, die from cancer. We call on every belief system we have when it comes to Avery. We have no choice but to continue to believe in the fight we see in her.
After 11 months, this sweet baby has endured 7 rounds of chemo—with one more to go before her bone marrow transplant. She spent her first Thanksgiving and Christmas in the hospital. She’ll be spending her first birthday inpatient.
She has also had 3 PICC/Central line placements, two T-cell collection days, CAR-T Therapy (an autologous transplant using her own cells), numerous bone marrow biopsies and lumbar punctures, a handful of COVID tests, and has faced CRS (Cytokine release storms), neurotoxicity, and hypoglycemia, all brought on by treatments to cure her.
Watching her battle CRS was the toughest part of our journey thus far. Fevers up to 106°F, unexplained body twitching, inconsolable crying, overall weakness, inability to eat, nausea, chills, and more.
Yet, her biggest fight is still ahead: Bone Marrow Transplant.
Just 4 days before her first birthday, she will receive stem cells from a stranger in order to have her best chance at a cure. Bone Marrow Transplant comes with its own degree of severity as they kill off all of her own body’s cells in the bone marrow to make room for the new cells.
She will go weeks without an immune system as we anxiously await signs of engraftment: the moment the new cells begin making healthy cells.
Until then, we’ll keep taking care of our sweet girl. We’ll keep turning to her incredible doctors, nurses, and extended care team to help us stay aware of what she needs as her little body works to accept the new cells.
This is a harrowing battle I would never wish on anyone. My emotions are all over the place as we begin this (hopefully) the last chapter.
We’re anxious about what can occur during a transplant.
We’re hopeful that this could be her forever cure.
We’re grateful for the sacrifice her anonymous donor is making.
Mosty, we love our sweet girl with every ounce of our being and simply want to see her live a long, healthy life, free from cancer and all it endures.”
This story was submitted to Love What Matters by Staci Salazar from Dallas, TX. You can follow her journey on Instagram accounts, and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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