What do you do when the worst thing you could have ever imagined happens to you?! Do you let it ruin you and become a miserable shell of a human?! OR can you shift your perspective, find things to still be grateful for, see the gifts that are always there even in the darkest times, and find purpose in your pain?!
I want to share with you the darkest experience of my life, and hopefully also offer some encouragement. This is my story.
I am married to a handsome man named Joshua Dukes who happens to also be a firefighter. Together we have 4 children. Indiana is our oldest at 15, and our only girl, and then we have 3 boys. Mac who is 13, Jedi who is 12, and Trucker boy, our baby who is forever 3.
My life as I knew it was forever changed in November 2014 when we found a mass in my baby’s belly. He was 19 months old at the time. If I am honest I don’t remember the exact date, but will never forget what time of year it was. He had been having fevers off and on for several weeks leading up to this point, but he was also cutting molars so I didnt think too much about it. It wasn’t until he started getting really lethargic and had no energy that I thought there might be more going on.
One morning I had dropped off my big kids at school and stopped by my moms house to say hi. She started feeling his belly and immediately called me over, as she could feel a really hard spot. When I felt it, it was so hard that I thought I was touching his ribs, but his ribs were 2 inches above the spot I was feeling. We drove straight to the Dr. where blood work, and an ultrasound were rushed. Thankfully my mom was able to be with me at the time as we waited in that cold, sterile examination room for a very long time, and they wouldn’t let us leave without the results.
Joshua had just flown back from the mainland from attending a funeral and was waiting for me to pick him up at the airport. When I told him all that was happening and that they wouldn’t let us leave, he knew that most likely it wasn’t going to be good news. When the Dr. finally arrived he informed us that indeed he had a mass in his abdomen, and we needed to have more tests done on Oahu asap but that his hemoglobin in his blood count was so low that he couldn’t even fly. We needed to head straight to Maui memorial to spend the night and have a blood transfusion. I remember at the time that being the scariest thought. To have a stranger’s blood put in my baby’s body. I kept thinking it was some weird stomach infection, that we would get medication or antibiotics and get sent home. Nothing could have prepared us for what waas to come.
There was such a sense of urgency placed on everything that we didn’t even have time to go home and pack our bags. Thankfully we had friends shuffle the big kids who at the time were 8, 6, and 5 to my mom, and Joshua was able to run home and grab belongings for me and Trucker. We headed to the hospital, spent the night there, and by mid day the next day were sitting in a hospital room on Oahu waiting to see a pediatric oncologist. You guys, I didn’t even know what an oncologist was, Joshua had to tell me, and up until this point no one had even mentioned the word cancer. Ugh I know. However looking back the nurses that first night in the hospital looked at us with so much sadness and compassion and it all started to make sense in my mind.
When this Dr. arrived he informed us that indeed he a very large mass, and that it was most likely one of two types of cancer. The first one is called whilms. This is the cancer we should hope it is, and it’s a lot less aggressive and has a higher survivability rate. The second cancer is called neuroblastoma and is a cancer of the nervous system. This is the one we should hope that its not, as it’s a very aggressive cancer, with a much more aggressive treatment, and lot lower survival rate. He told us that he would have a rushed biopsy surgery the very next morning to determine what kind of cancer it was and also to have a hickman line placed. Which is basically like a port for a toddler, its a tube that is attached to his main artery and just sticks out of chest so they didn’t have to poke him everytime and could start administering pain medications and chemotherapy.
By noon the next day this initial surgery had taken place and then it was….. Thanksgiving. This is why I will never forget what time of year it was. As the whole nation gathered with their families to pause, reflect, and be grateful, we were apart from ours, adjusting to hospital life, and waiting to hear what kind of cancer our baby had. I felt numb.
It’s amazing what time does during trauma because that long weekend of waiting and praying, and hoping felt like about 10 years however by the end of the next week we had our initial diagnosis, and had also started our first round of chemotherapy.
His diagnosis was stage 4, high risk, neuroblastoma. And yes it was the cancer we didn’t want. Stage 4 meant that it had spread to all 4 quadrants of his abdomen, high risk meant he had a high risk of it coming back again and again, and we also learned it had metastasized to his bones and his bone marrow.
I will never forget the desperate feeling as a mom as the pediatric oncologist matter of factly was telling us all that would happen with our baby. Multiple rounds of high dose hospitalized chemotherapy, radiation to his abdomen, life threatening abdominal surgery, stem cell transplant, blah, blah, blah, all his words just started blurring together and I could hardly see him through my stream of tears, and I told him “NO. I don’t want to do any of those things, he’s my baby.”
I learned very quickly that there are no options. There is pretty much one protocol for this type of cancer at most children’s hospitals across the nation which I confirmed with several phone consultations. He was given a 50% chance to live for 5 years. Let that sink in for a minute….Not a 50% chance to live for life, a 50% chance to live for 5 years. We were told to hope the chemotherapy worked.
Fast forward 4 months, we have been on Oahu the whole time and Trucker has now had 5 rounds of high dose hospitalized chemo. Each round is a 5 day hospital stay, but we were pretty much in a out of the hospital the whole time with his compromised immune system. I found a cancer center in NYC where they specialized in neuroblastoma. In fact they had 5 Dr.’s just for his type of cancer and they followed a slightly different protocol, one that felt a little more personal and I knew we had to go there. Through a series of miraculous events we were able to transfer full care there.
This however brought on another hardship for our family as Joshua and the big kids went back to Maui to return to work and school, and Trucker and I headed to NYC to continue treatment and now our family was 5000 miles apart from each other for the first time. As most of you probably know, cancer just doesn’t go away overnight and we spent the better part of the next year and half in NYC. We did the best we could with Joshua and the big kids flying to NY, Trucker and myself flying home whenever we could, Joshua flying out for long weekends even, and we also rotated big kids staying with us in NY. This however was a very looooong stressful time for all of us, physically, emotionally, and financially as you can imagine.
During that time in NYC Trucker underwent multiple more rounds of high dose chemo, major life threatening abdominal surgery that lasted 10 hours where they literally cut him in half to remove his main tumor which was wrapped around his aorta. For those of you that dont know your aorta is your largest artery and even grazing it during surgery could have caused him to bleed to death. He also took part in several experimental trials, some which showed some results, and some which didn’t. After being in NY for almost 9 months Truckr started complaining of headaches, and we learned he relapsed in his brain. This resulted in 2 brain surgeries for him, where they also placed a port in his head so they could radiate his cerebral spinal fluid.
All of these treatments are devastating to watch someone you love go through, let alone your toddler who I often had to hold down while he was crying to have these painful procedures done. I would have traded spots with him in a heartbeat if I could have somehow done these treatments for him.
After 2 years of straight treatment, one and half of that time being in NYC he was still showing signs of cancer in his bones and there was no end in sight to treatment. Joshua and I made the incredibly difficult prayerful decision to stop all conventional treatment, keep him home in Hawaii where we would treat him naturally as best we could, be together as a family, create a shit ton of memories, and trust God for the timing of his life.
We had him for 5 more months, and although all the natural remedies we were using didn’t save his life, this time we had with him, and all of us together was SO life giving. None of the conventional treatments ever felt good as a mom. I hated poisoning my baby, almost as much as I hated the cancer.
You know what did feel right?! Fresh juicing daily and mixing his supplements in, feeding his little body real nutrient-dense food, using essential oils, detoxing as best we could, and being together as a family.
Although we never stopped praying or hoping for a miracle God had different plans for Trucker boy, and he peacefully took his last breath in my arms on the morning of March 3, 2017. One month shy of his 4th birthday! 🙁 I’m pretty sure my whole life just saying those words will always bring tears, and so much sadness, and rip my heart halfway out of my body.
Here is what I think you should you know. God doesn’t ever fully heal anyone on this earth. All He does is give us more time. We thought we were going to lose him right in the beginning after his first biopsy surgery. His cancer got really angry and his belly blew up, it was so distended it couldn’t have gotten any bigger, and they were having a hard time stabilizing his vitals. But we didn’t. We had him for 2 and half more years. What an incredible gift and blessing that I will always be grateful for.
When I was first asked to write this as a speech, I thought yeah sure no problem, I can share. I often do “overview highlights” of our journey in the health and wellness industry, and essential oil education I do now, as to why I am so passionate about what I am doing. However as I started to write it out, and was praying about it I felt led to share in another way. So here is what I think someone or maybe several people need to know.
I recently heard a brilliant woman speak by the name of Dr. Edith Egar who happens to be a 94 year old Auschwitz concentration camp survivor. She said this ” I can’t say that everything happens for a reason, but I can say that pain, hardship, and suffering are the gifts that help us learn and grow and become who we are meant to be. You can choose to see the gifts regardless of how hard your circumstances are.”
Woah right?! I have to say that 100% agree with this. I will never in my life be able to say that pediatric cancer happens for a reason. Watching kids suffer through cancer, its treatments, and death will never ever make sense to me but I will say there were many, I ean MANY gifts along the way.
Right from the very beginning I felt compelled to share the difficulty our family was going through. One day I was a content stay at home with 4 littles and then next day I was living in the pediatric cancer world living out my worst case scenario in real life. Joshua and I both started sharing on social media which resulted in the most unbelievable love and support we could have possibly imagined.
I will say though the biggest gifts were the people God placed in our lives to journey with us. From close friends and family flying in from other islands and the mainland to shuffle and entertain the big kids, to meals being dropped off at the hospital, from gifts being dropped off for all the kids(it was holiday season), to crowdfunding being started so we didn’t have to stress so much financially, to the fire fighters my husband worked with signing up to take his shifts for 6 months!!!! What an incredible gift!!! In fact, can you think of any other career where this would even be possible?!
Another incredible gift and one for sure worth mentioning is our relationship with the FDNY, the New York Fire department. Trucker was literally raised in a fire station, I even have photos of him bathing in the fire station sink. One of the only things that lit him up during treatment was fire trucks, and the sound of sirens outside the hospital window!! When we first got to NYC I used to tell him all the time that every firetruck we saw had their sirens on for him!! and he would smile SOOOO big.
One day Trucker and I were crossing the street on 2nd ave, headed back to the Ronald McDonald house from the health food store after dinner. The Ronald McDonald house in NYC isn’t a house at all, in fact it is a 14 story appt. complex and where we lived while we were there. During the summer they have different volunteers come and cook dinner for all the families staying there and this particular night had lit the chicken on fire. So there was a legit fire call at our home. Now there was already 2 fire trucks parked in front of the Ronald McDonald house and as we were crossing the street the 3rd one pulled up right in front of us. Trucker face beamed as he was sure they showed up just for him.
What happened next was like the scene out of a movie. I watched this big, tough bald headed NYC Fire Capt. get out of the truck and his crew of men shortly behind him. They started walking towards the fire, but when he looked our way, he saw Trucker boy’s face, and turned straight towards us with outstretched arms as if they did just show up for us!! Trucker at the time was going through heavy treatment, had just turned two and wouldn’t go to anyone but his mamma, but he went straight into Capt.Jim’s arms as if they were old friends. The fire was already out by this time so they let Trucker climb all over the truck, and pretend to drive, and this was the beginning of them adopting our family.
For the remainder of our time in NYC, we spent many afternoons at firehouses in the upper east side, having fire truck lunches, fire truck rides, shooting water, and Trucker became on ‘the boyz’. Every single time we visited I watch another grown man fall in love with a little boy who loved fire trucks as much as they did. Trucker’s best friend in NY was Uncle Cisco according to him, his main truck was Ladder 13, and they spent many hours together playing out rescue scenarios with Trucker’s toy fire trucks. It was such a beautiful friendship. The boyz had mac and cheese on standby in case we stopped by, would bring food to us when Trucker wasn’t feeling good, and when Trucker had big hospital treatment days they would bring the Truck by the hospital in between calls to put a smile on Trucker’s face.They even had him sworn in as an honorary FDNY member and had his own little NYC turnouts made for him so he could hang them up with the boys when he came to visit.
When Trucker passed 24 of them flew out to Maui for his funeral and Trucker had full honors as a fallen hero. Fire fighters from both Maui, and NY worked really hard to make this day special and give Trucker boy the best send off. The gift of the FDNY and all of the people who loved on us and poured into us along the way truly kept us going.
Here is my encouragement to you. If this is speaking to your heart in any way. Own YOUR story, and ALL that comes with it. Even if it’s hard. Own your story and find a way to share it. Maybe that doesn’t look like social media for you, believe me I know how overwhelming it can be at times. Maybe for you it’s just sharing with a friend, or a friend of a friend, or a family member, someone you know might be going through something similar. Maybe for you it’s starting a blog to document it. No one has ever been you or gone through exactly what you have, but you never know who might need to hear your story, all you have been through and that somehow you are still OK!! I just know that if we hadn’t started sharing our story, we would have missed out on the gifts of SO many people.
I know that most of you will not be able to relate to the trauma of pediatric cancer or of losing a child, and in fact I pray you never do. However what most of you can relate to is going through something really hard, maybe a circumstance, maybe a season, and maybe even harder than you thought possible to live through, but somehow have to figure out how to still live.
For you possibly it’s a painful divorce, or an affair. Or perhaps it’s the death of a parent, or a best friend. Perhaps it’s a chronic illness diagnosis, or a major debilitating accident. Maybe it’s that you wrestle with depression or anxiety, the world is full of unknowns right now. I don’t know exactly what is it for you, but I hope I can encourage you in this moment. Life is a beautiful mess of highs and lows, we all go through it at some point, it’s part of our human experience, and I believe we are meant to go through it together to help lighten the burden.
You see for us, although we were anticipating Trucker’s death towards the end, nothing could have prepared us for trying to figure out how to live minus one, while processing all the trauma we had been through. It seemed almost cruel that the world kept spinning and life kept happening and we had to figure out how to live with the biggest heartache you could ever imagine. Here is the thing though. Life still does keep happening even when you don’t want it too, the world goes on, and the sun keeps rising every morning. At some point you have to… I won’t say move on, I really don’t like that term. I don’t think your ever move on past loss and trauma. Let’s say move forward. Choose life. Find joy. Even with a heartache. Even when hardly anyone understands what you are going through.
If this is you right now, if you are right in the middle of your darkest hour, DON’T LOSE HOPE!!! You are never too deep into the darkness to find your way back to the light, and I believe with all my heart if you are able to shift your perspective, even a little bit that you will be able to see the gifts that come along with your circumstance. Those gifts will bring you joy, and you can have both. Joy and sorrow. I know this to be true.
Here is the honest truth, I dont have magic steps for you to get there, I just know that it is possible to live through your worst case scenario, and still live with joy. We are all so bio-dynamically different and process life, emotions, trauma, and death differently, you will have to find your own way.
What I want to do though is share a few things that have helped me get through in case that is helpful for someone else.
The first thing I do, and I don’t always nail it but I try is to spend time with God every morning. I call it coffee with Jesus. Staying close to our creator helps me feel close to Trucker who I believe is with him.
Second, I went through ptsd counselling the first year after Trucker passed. There is no shame in your game from needing help from a trained professional to walk you through your darkest moments. I found this very helpful, and probably actually could use more as the layers are peeled off.
Third, I find moments of joy every single day. These little moments keep me going to the next little moments. A big source of joy for me is my kids. Even if I just stop what I am doing, and watch them do whatever they are doing. It fills me up and brings me joy in a way that nothing else can.
The last thing I will share with you that has been helpful is taking care of my body. I do this through a nutrient dense real food diet, regular supplementation, and ongoing regular exercise. All of these things together help me manage my emotions immensely.
One last encouragement to you, allow your ashes to be turned to beauty. It will require a lot from you. It will require you to be vulnerable, it will require you to be brave(really fuckin brave sometimes), and it will require you to be transparent. However you never know how you and your story might positively impact another person’s life, and it WILL be worth it. I promise.