Wednesday, April 24, 2013

D-day, three years Later.

Well, we are getting close to D-day. D-day meaning Cashy's diagnosis day May 3rd, 2010, one of the worst days of our lives. The day that changed our lives, but not for the worst. I will say it changed our lives for the better, as uneasy as that may sound.

May 3rd, 2010 will be another day amongst the many other memorable and unforgettable days we will never forget. As long as we live, we will always be haunted by the meaning of that day. That day brings back a mirage of emotions, a feeling of hopelessness, helplessness, mere confusion and utter disbelief.

How could my ever so perfect 22 month old (22 months at the time) baby boy, whom we prayed and planned on entering into this world. The baby I fought so hard to keep pregnant with after the roller coaster of a pregnancy I had. The perfect little monkey baby I birthed, the sweet little tiny bundle of joy daddy did skin to skin with, within hours of him being born. How could our semi perfect illusion of what "life" should be, be turned around in the blink of an eye.

Little did we know what we thought, or I thought, was a perfect life, it was far from that. We were living the dream but in a completely wrong type of way. Our lifestyle was un-healthy; we were living by the "book" of what you think life is supposed to be. The nice new house, the new cars, the ATV's, the camper, the new furniture and now the new baby that we had "planned." Everybody wants these things, right? But are they what really makes you happy? No happiness comes from your heart; it doesn't come from that new car smell in your brand new SUV. It comes from deep within your soul. What does truly make you happy?

I’m not one to usually admit things when I'm wrong. I am the type who tries to make excuses or reasons as to why I did that wrong or why I didn't do it this way. But I have no excuse for the way we used to live. I look back and realize I truly wasn't happy with myself. Everything I ever wanted was right at the tips of my fingers but what did it truly bring me? I was nearly 50 pounds overweight, depressed and in a deep deep "funk" as you would call it. I drank 60oz of diet coke a day, and never exercised. All before the diagnosis of cancer wreaked havoc on our lives. I used to be a soccer star, I made goals and would run circles around girls. I had three full ride scholarships to college for soccer (I know, I know, why didn't I take one of them, I wouldn't have student loans..yeah, yeah, yeah...two words Mike Hyde, lol). How did I get so far off of track?

Before the diagnosis I was doing everything wrong when it came to feeding and nourishing my family. I in a way blame myself for Cashy developing cancer. I believe the food and milk I was feeding my family caused Cashy to get cancer, along with many environmental factors. Before diagnosis I recall warming up Cashy's (plastic) bottles of cow’s milk (ugh) in the microwave. It's utterly shameful to even talk about. Why would I warm up a plastic bottle of cow’s milk in that ever so deadly microwave? It's terrible. We don't have a microwave now (we haven't had one for over a year and a half now, don't miss it one bit), let alone drink cow’s milk. Strictly coconut or almond milk for us now. I cooked meals from boxed dinners like hamburger helper (talk about MSG and natural flavor overload), I let them eat Doritos and Fruity Pebbles, and fruit snacks. I haven't bought anything like that in a long long time now.

So when I say I'm thankful for cancer in a way for changing my life in many good ways as well as the many bad ways, it's because it has bettered me as a person, a mother, a friend (even though some of you probably get sick and tired of all my rambling and conspiracy theories).

When Cash was diagnosed the second time is when we really changed our way of eating as a family. We decided to go vegan for Cashy. We did the juicing protocols, vegan, and no gluten. Man, at first that was the hardest thing I've ever done in my life. In the beginning I felt like I was starving us. What do we eat? What do the kids snack on? Cashy loves his egg burritos, how do I mimic that? Day three I think I freaked out and cried and cried. I had to research new meal ideas, had strange spices and different textures of foods I've never even seen before. Quinoa? What the heck is that stuff!? Now I use Quinoa on almost every meal. It's super high in protein and very yummy. The kids absolutely love it. It makes wonderful veggies patties, veggie stir fries, and there are so many ways to use Quinoa, it's amazing.

So with the three year mark coming up I found the article I wrote for the, Treating Yourself magazine featuring a nine page spread of Cashy’s story. This was the VERY first piece of writing I had ever done…Very first. You can see where I obviously was a beginner at this writing thing when reading it, but it talks about the D-Day, and the surgery, chemotherapy and septic shock that Cashy went through. Sorry, but this article is super long!!!

On May 3rd, 2010 after 10 weeks of weekly trips to the pediatrician’s office, we were told once again that our beautiful son Cash just had a simple case of Mononucleosis and to let him rest and give him Tylenol and Ibuprofen for his reoccurring fevers. He was sleeping 18 hours a day and vomiting in the morning and at night, and in the last week his left eye started drifting and drooping. This had gone on too long, it felt like our son was dying in our arms and there was nothing we could do about it.

After taking Cashy to his pediatrician and being told the same thing again, we left the pediatricians office and we met my mom for a quick bite to eat. Cash had taken a bite of some macaroni and cheese and instantly threw up. I heard someone in the restaurant say under their breath, "That baby is sick!" I told my mom that I was going to leave and take him to the emergency room at Community Medical Center (Where I work as a Registered Nurse). I said to my mom, ironically, "Well, I don't think it’s a brain tumor or anything." Little did we know we'd be hearing the words no parent would ever want to hear.

Cash and I arrived at the Emergency room and we were quickly seen by the triage nurse who was extremely concerned with Cash's lethargy, and weakness. I told her that he's been like this for 2 months now, and his doctor keeps telling us the same thing, it’s MONO. I told her it’s time for a second opinion.

We were taken back to a room where we were seen by the doctor right away. Even the doctor was a little skeptical on my need to come to the ER. She told me that my pediatrician was a great doctor and that we should trust her. I told her that we just needed a second opinion and that this has gone on too long. Reluctantly she says, "Well, I'm going to order a CT scan of his brain then." I said, "Ok, let’s do it." Not thinking the worse at this time.

After the scan, the radiology tech (which happened to be my mom's neighbor) told us that the scan looked good and nothing was abnormal. We felt relieved.

We continued to wait in this small room and now all of our family has arrived (both grandma’s, and Grandpa Jim), when finally, after a light knock on the door the doctor appeared. While taking slow, deliberate steps she entered the room. Her face was serious, but her eyes were full of compassion and regret.

Our 22-month old son was lying across my lap like a wet, limp rag. His energy was gone and his light was fading. He was no longer the playful, spirited child he had once been. All she said was, "I'm so sorry, I'm so so sorry." We were like “WHAT?” Then she said it again, "I'm so sorry, your son has a 4.5 centimeter mass in his brain."

Time stopped at that exact moment. I couldn’t breathe, I couldn't cry, I couldn't even talk. I was blown away, and scared to death for our sweet baby boy. As the doctor left the room, we sat in silence. Our lives were on the verge of chaos and there were no words. We were in shock and barely able to process what had just been revealed. We looked at Cash, he had no idea the magnitude of this discovery, but we knew he would soon suffer its consequences.

"Your child has a mass in his brain." That sequence of words changed everything. We were utterly terrified. That was one of the worst days of our lives. It felt like a death sentence. Two long hours later, Cash and I were life flighted on a fixed wing plane to Salt Lake City, UT heading to Primary Children’s Hospital. This was THE scariest airplane ride I’ve ever been on. There was extreme turbulence and I wasn’t able to sit next to Cash. Cashy was at the front of the plane and I had to sit in back.

There were so many emotions running through my head. I felt so alone, and scared.
Why did this happen to our baby, why Cashy? Why Us? That’s all I could think about.

Cash and I arrived at the Salt Lake City airport two hours later. We were driven by ambulance to Primary Children’s Hospital and taken to the Emergency room where we were greeted by Mike’s family, his uncles, his aunt and cousin. Thank God they were there, I needed somebody.

Mike and our six year old son Colten drove down in record timing. I can only imagine what was running through Mike's head while driving the 8 long hours to Salt Lake City. I wish he had been with us on the plane, but due to weight limitations only one parent could go.

We were later transferred to the Neuro-trauma Unit, where they would decide the next plan of action. We were told that this could be a few different types of cancers, due to positioning of the tumor, (In the back of my mind for some reason I thought possibly it could be benign, just wishful thinking I guess), but they wouldn’t know for sure as to what type of treatment protocol we would need to take until they did a craniotomy and biopsy of the tumor.

His tumor was wrapped around his optic nerves and intertwined with his hypothalamus and his pituitary gland. So removing the tumor was going to be a risky job; risks for blindness, paralysis, and even death from blood loss.

May 5th, 2010 was the longest day of our lives, waiting and waiting for updates from the doctors while our little Cashy was being operated on. 4 hours later the brain surgeon pulled us into a small waiting room and told us that they were only able to remove approximately 10% of the tumor due to its location and how it was wrapped around vital blood vessels and his optic nerves, and that his tumor was part of the blue cell tumor group, but we wouldn’t know more until pathology had a chance to look at it. Only 10 %, not the news we were hoping for.

We had to wait 6 days to find out if the tumor was even cancer and what type it was. That Monday evening after anxiously awaiting the oncologist’s news, we were taken to another small room where we were told the tumor was in fact cancer and its name was PNET, primitive neuro-ectodermal tumor, it was extremely aggressive and malignant. Those words should never ever be used in the same sentence with child and brain. We were devastated.

We were told Cashy would need to undergo three rounds of standard chemotherapy, and then three rounds of high dose chemotherapy with 3 stem cell transplants, and possibly radiation and another surgery.

After the surgery Cash was completely blind for 6 weeks. He was so scared, he wouldn’t even let Mike or I get out of the bed to take a shower, go to the bathroom or even eat, and we would have to sneak out of the room so he wouldn’t know we left. He would pat on the bed with his arm for Mike and me to lie down beside him.

His speech and language skills took a major downward spiral two months prior to his diagnosis. It broke my heart seeing him laying in the hospital bed, blind, a bloody scar on his head with stitches, and fear of the unknown.

As I would walk through the halls of this huge hospital, I would selfishly look at other little boys Cashy’s age and ask myself and God, why Cash? Why not one of these children, why our baby, I never got an answer.

Cash started his first round of chemotherapy on May 21st, 2010 after having a Central line and a G-tube placed a few days earlier.

He had his first doses of the drugs and did ok until nine o’clock that night when Cashy had a major seizure where he coded and needed resuscitation.
The seizure was from extremely low sodium levels in his blood. He was left in full posturing (where his arms and legs were sticking out straight and stiff and his back was arched, the most awful thing to see your child go through). That lasted 10 hours in the PICU.

They took Cash for a MRI scan of the brain and found that his tumor had grown past the biopsy and larger to 4.7cm, in just a week and a half. Terrible news.

Cash finished up round 1 of chemotherapy in the PICU, we were then transferred back to the oncology floor until we were able to head home for a week break. Cash finished up round two of chemotherapy with a bacterial infection in his blood, transferring us to PICU again, but just for 2 days until his infection cleared up. Another code blue episode later, from a little overdose of Fentanyl and versed from his central line removal (the source of the bacterial infection).

Cash Celebrated his 2nd birthday in the hospital, still blind, but happy and there was a little glimpse of that boy we once knew and which we yearned so deeply to see again. Over time, Cashy's complex treatment schedule became our new norm.

We cherished each day and celebrated the small victories. We took nothing for granted, which included the support and love we received from so many. There is nothing good about cancer. However, it does have the uncanny ability to bring people together-people whose paths, under normal circumstances, would never have crossed. Of course, our family and friends were on the front line offering assistance, but it was the kindness from strangers-those who would later become friends-that moved us even more. Growing up we were told it is better to give than to receive, but I have learned there is a time and place for both. Those giving walked away with the same big smile and hearts full of joy as they had granted us.

After Cashy’s third round of chemotherapy, he had a MRI scan to see what was going on in that brain of his. By the grace of God Cashy regained his vision slowly, it was simply a miracle. We thought our boy was going to be blind forever. Cash had his MRI on a Friday and we had to wait until Monday to get the results. We had our camper parked out in the parking lot so Mike and I could take breaks and get some rest once in a while (rest, yeah right, what’s that??).

So that morning Mike was sleeping in camper after a long exhausting night up with Cashy; vomiting, diaper changes, IV’s beeping, nurses walking in and out, and Cashy crying for water. I was in the room with Cashy when the oncologist came into the room to deliver the news of the MRI, I can’t quite remember the words she said, but overall she told me that Cashy’s 4.7cm mass that took over his brain was completely gone, but he had little remnants of cancer cells at the base of the skull where the tumor was eroding the skull, but the mass was completely gone!!

I hugged the doctor and told all the nurses, it was seriously the best news we’ve had during this whole journey. So I hurried and called Mike, but he didn’t answer, So I had one of the nurses sit with Cashy and I ran down to the camper to deliver the good news. The large mass was miraculously gone but the remaining cancer reminded us that we still had a long road ahead of us for a complete recovery.

We were elated, excited, overjoyed, every positive word you can think of, that was us! We were on cloud nine, calling everyone and everybody we knew!! Cash then started his high dose chemotherapy with stem cell transplants on August 18th, 2010. The first round went very well, besides the vomiting. Cashy was out of hospital in 12 days after receiving high dose chemotherapy and a stem cell transplant! We couldn’t go home to Montana though; we had to stay local in case something was to happen.

His second round of high dose chemotherapy went alright with a few minor ups and downs, extreme nausea and vomiting, chills, peeling of the skin and diaper area (leaving a severe diaper rash), and fluid on the lungs requiring him to need oxygen support. The doctors explained to us whatever is happening on the outside of his body, it was also happening on the inside of his body…which wasn’t good.

He was then placed on TPN and Lipids as his main source of nutrition due to the inability to keep down his tube feedings. During this second round of high dose chemo, Cash was so incredibly sick and weak; Mike and I finally had enough of watching Cashy suffer and took matters into our own hands. Cash had received his medical marijuana card a few months earlier, so Mike went about learning the safest way possible to make Cannabis Oil for Cashy, and proceeded to make a batch.

After a few doses of the Cannabis Oil, our son transformed. He was able to take bites of food (which he hadn’t done in over 40 days), he was able to sit up and play, laugh, and enjoy a quality of life that he wasn’t getting from the pharmaceutical drugs they were administered to him as a “nausea cocktail.” We were so thrilled with his progress; we continued to give him the cannabis oil through his G-tube. He went from throwing up 10 times a day to maybe 2 or 3. It was a miracle drug.

The person that kept Mike and I going strong and kept us from going into a slump of depression from the circumstances, was our six year old son Colten John. He is an amazing little boy full of energy and spunk and never skips a beat. He was our rock, our most solid thing we had to keep us alive and striving for Cashy’s healing.

Cash went into his third and final stem cell transplant with high dose chemo eating, walking with a little assistance, laughing, his nausea was controlled and he wasn’t in pain. He got through the last round of two days of medications and every 8 hour had baths, (to wash off the chemo that can seep through the pores and burn the skin). Then on Day 9 post stem cell transplant, Cashy developed a bacterial infection in his blood while still immune-compromised (extremely dangerous). Cashy immediately became very sick, struggling to breath and was transferred to the PICU.

The next morning Cash became even sicker and was really having difficulty breathing so doctors opted to place him on a ventilator to support his lungs. After another code blue episode and watching them struggle to incubate him, He blew up like a balloon with all of the fluids they were giving him to try and increase his blood pressure. Nothing was working, and his condition was worsening. At one point, Cash had 13 IV pumps flowing medication into his body to keep him alive. He had 4 code blue episodes, which required full resuscitation. He had chest tubes draining fluid from both lungs, he had arterial lines, he had double lumen pics lines on each arm, and singular IV's in his wrists and feet. Foley catheters draining his bladder. Nitrous oxide flowing to help with the pulmonary hypertension.

After he was on the vent for two weeks they told us that he developed a rare condition as a side effect of the stem cell transplant, it was called Diffuse Alveolar Hemorrhage (severe bleeding in the lungs).

He was then placed on an oscillator (after another code blue episode, and the bleeding was worsening). The doctor came to us with terrible news that she thought Cashy’s tumor has spread to his brainstem; she called this micro-invasion of the tumor. We were scared to death, they said if that was the case there was nothing they could do and the only way to find out was to do a MRI.

They took Cashy for his MRI after coding again and needed CPR through the whole scan, they came back to tell us the news that there was no micro-invasion of the tumor and the CANCER was completely gone, but that Cashy had suffered a minor stroke.

Relieved that the cancer was gone, we still had this huge obstacle to overcome; the collapsed bleeding lungs.

Things were getting bad really fast. The doctors told us it was very unlikely that he would make it, and they asked us about 6 times if we wanted to continue resuscitation efforts in the event of another code blue. We told them to continue to do everything they can until all efforts are lost. We brought in a Catholic priest that day and Cashy was baptized with all our family around for support. It was a very emotional service. After everything little Cashy and our family went through, how could God let us lose him now?? It wasn’t fair; I had my first actual “breakdown” that day. I’m usually a very strong person who doesn’t display emotion easily.

But there was no hiding my emotions now, my baby was dying. For 6 weeks we watched the rollercoaster of a monitor screen of his vital signs 24 hours a day/ 7 days a week. No TV ever played, just Michael Franti and Bob Marley on the IPod, it kept us semi sane. His blood pressure would go up, his heart rate would go down, his blood pressure would go down, they would give him Epinephrine for it to go back up. It was a vigorous process of ups and downs. Cash had two nurses at all times. He was a busy patient. Those nurses are amazing. After four weeks on the oscillator the doctors told us he was at a “plateau of sickness,” and that if there is any hope of him surviving we would have to wean him off of the oscillator and put him back on the regular ventilator.

This was a stressful process that even the doctors were skeptical to try. They told us Cashy would probably need a trachtube placed and he would most likely be on the ventilator for months due to the extent of lung damage he had.

Well after 5 days, yes 5 days, Cash was extubated (breathing tube removed) and he was breathing on his own with a small amount of oxygen. How did this happen??? It was a miracle. And that’s exactly what the doctors said, he was our Christmas miracle! Our goal was to be out of PICU and back to the oncology floor by Christmas 2010, but Cashy was out of hospital and back at great grandma’s house by December 17th!!!

Once again a miracle!! Cash spent Christmas with our family in Salt Lake City. The best Christmas present any parent could ever receive. We were finally able to leave Salt Lake City after Cashy’s 100 day post bone marrow transplant workup and MRI scans of brain and spine, then head back home to Missoula, Montana on January 31th, 2011 after 10 long months in a strange city. Cashy continues to be cancer free, and we count our blessings every day for the second chance we get with our amazing son Cash, “The boy of Steel.”

It felt bittersweet, like it was almost too good to be true, BUT it was true! To finally be able to bring our baby home to his room and toys, and to sleep in our own bed after 10 months of hospital chair beds, and the camper was beyond amazing. We would have never chosen to be a part of this journey with childhood cancer, but it was chosen for us and our sweet baby boy Cashy. The battle is never gone, never unnoticed, or completely absent from our thoughts, and obviously never lacking from our prayers. Sometimes it is the simple things that serve as the greatest encouragement during this fight.

At times it's hard to look back over the past year. And yet there are days I find extreme comfort looking back and seeing God's faithfulness amidst our own nightmare.

If cancer has ever touched your life or the life of someone you know. I don’t have to tell you how devastating it is. There are no words to describe watching cancer and chemotherapy take its effect on someone you love. Cashy survived septic shock, stroke, pulmonary hemorrhage, pulmonary hypertension, all side effects of the chemotherapy and bone marrow transplants he had received.

We were told after his 4th cardiac arrest episode he would have brain damage, organ failure and that he would ultimately die. However, he did not die, and it was because of the cannabinoid therapeutics that he was receiving and their known antioxidant and neuro-protectant capabilities. Many say cannabis has anti-tumor effects and could possibly be the cure to cancer.

We were very fortunate to have the support of friends and family through Cashy’s incredible journey and would not have been able to battle cancer with Cashy without all of the financial and emotional support we received. Along the way we came across families that were not so fortunate and we were able to help them because we had so much support. That’s when we decided to start the Cash Hyde Foundation to continue fighting pediatric cancer and assisting families in need.

The fact is, in one way or another, cancer may affect us all. That’s why it is up to all of us to play a part in fighting cancer during our lifetime. Cashy’s journey has given us all the opportunity to unite, with the same common goal, helping children fight cancer.

Well there it is, my first piece of writing I had ever done, and it was published. Now looking at if I would have totally gone about it a different way, but hey for my first writing, it wasn't too bad.

Well I must get going, I hope you all enjoyed this post. It's a long one.

I want to thank those who wrote response comments to my post the other day. It helps. It helps a lot. Sometimes just knowing that someone is listening, or reading, it really helps a great deal. I can feel the love and positive thoughts and I look forward to many more comments.

I want all of you to know that I appreciate you.

I think it is important to note that my experiences and my PTSD (I've diagnosed myself, lol) are unique to me. However, I do want to mention that life after the death of a child to pediatric cancer is still very much a part of pediatric cancer. It is a reality. It does not go away when your child dies. It’s not just fighting for a diagnosis, getting a diagnosis, chemotherapy, radiation and surgery and countless hours crying and countless hours of emergency calls to the doctor, as well as countless hours of hospital stays and staying awake making sure your child is doing ok. Oh, did I mention the countless hours worrying where money is going to come from to pay for gas, food and a mortgage (over 60% of families diagnosed with pediatric cancer file bankruptcy).

There are so many facets to this that only a parent/caregiver of a child with pediatric cancer can know them all. I hope none of you ever have to know.

Cashy, I hope you are warm, safe and happy. I miss you so much. My heart longs for your touch and to hear your sweet voice. I love you buddy. I'm long overdue for a dream of you my sweet boy. Please come to me soon!


  1. Kalli, Every day I hug my boys tighter and spend time enjoying the little things because of you. Thank you for sharing Cashy with us! I saw an eagle beside the lake on my way to work yesterday and thought of him. xo

    1. Thanks for reading Katie!!! Hope you and the boys are doing good!! I bet their all getting so big!!!

  2. Thank you. I read every word. You are always my hero, all of you. K :)

    1. Thanks for reading!!! I truly appreciate all you'd support!!! ;) one love!!

  3. Thank You Kalli for that beautiful post. I LOVE the article for TY- I don't know how I missed it before? I have wrote for TY too- They were the first magazine I ever wrote for myself :)
    Thanks to YOU and your new crunchy, natural habits my family and I have been following along- slowly but surely I am seeing wonderful changes too! We struggle SO MUCH with JUNK Foods and eating right but honestly, because of you and your family's efforts to live healthier my family is healthier & happier and eating more nutritious than ever before. Thank you for sharing your struggles and your triumphs and your beautiful sweet memories of the boy we have all came to fall absolutely in LOVE with!Please continue to enlighten us with your healthy tips and tricks for a more natural and compassionate lifestyle. Sending lots of LOVE to you and yours!

  4. Thanks Linds!!!' And thank you for reading my blog and being such a great supporter to the foundation!! We truly appreciate it all!!! Hope the fam is doing good!!! One love sista!!!

  5. I read much of what you write also Kalli and you inspire me to keep up with nutrition for my family. My daughter had a cancerous tumor in December of 2011 (medulloblastoma) and she has been cancer free (except for what we all have) for some time now. You help remind me that I cannot let up on the crazy nutrition that I go through each day. I'm so sorry you lost your precous boy, find peace in knowing that you will be reunited one day in Heaven.

  6. I also read every word, through the blur of my tears! You are strong, & good & remembered... all of you. LH

  7. Thank you Kalli for the beautiful post that inspires all of us to cherish life . You were my labor nurse when I had my daughter Caroline in April of 2010. We talked about your boys that day and when I heard months later on the news that Cashy was sick I wanted so badly to do something for you. You were so good to me that day and helped bring my baby girl into the world. THANK YOU! You are an amazing nurse and an inspiration to all. Take care and I hope to see you around Missoula one day and re-introduce you to sweet Caroline. I will keep reading and you can count on my family to support the foundation in any way we can!

  8. Kalli I think of you guys on a daily basis, just know that you are in my prayers always! I love that picture of Colty hold Cashy as a newborn...he's so tiny!
    I hope you are all doing well! Miss you guys!
    Love you!!

  9. Thanks for all of your wonderful posts...