Adam’s Story

Site created on July 30, 2014

On July 28, 2014, I was diagnosed with Acute Lymphoblastic Leukemia at St. Jude Children's Research Hospital. That same day, I received the first dose of the 2 1/2 years of chemotherapy treatments I need to save my life.


Cancer? How could I have cancer? I was experiencing the best summer of my life. In June 2014, I went on a spiritual pilgrimage to Germany with my youth group and traveled to Florida with my older sister, Skyler. In July, I toured colleges, hiked the hills of North Carolina, served as a counselor at Mud Camp, and rafted the level 5 Olympic Course on the Ocoee River. Sure, I had been tired, lost a little weight, and had a slight pain in my knuckles, but cancer? No way.


On the night I returned from the raft trip things began to change. The slight pain in my knuckles became massive throbbing in both hands. It was the worst pain I could ever imagine. I took some medicine and the pain was gone by the next morning. My Mom was concerned I might have arthritis so we went to the doctor and he decided to check my blood. A normal range for a white blood count is between 4,000 and 12,000. Mine was already at 350,000!!!


Within 24 hours, I went from a guy eating pizza and watching the sun set over the Mississippi River with a friend to a cancer patient receiving chemo in the ICU at St. Jude. My cancer was growing fast. There was no time to waste. Without the amazing advancements St. Jude has made since it first opened in 1962 in treating ALL, I wouldn't  be alive today.


Those first few months are a blur. The initial goal was to get me into remission. My medical team, led by Dr. Ching-Hon Pui, accomplished that within the first two months. Now I have completed the 2 and 1/2 years chemo journey. I have had some really rough times, because of a lot side effects. One of the toughest challenges was the allergy I developed to the main drug I needed for cure. Dr. Pui decided to use an alternative drug at a dosage level and frequency that hadn’t been used before. I successfully endured 85 doses at a cost of almost $30k per dose totaling over $2.4 million. So far my treatment has cost almost $3,000,000. St. Jude saves all lives at any cost it takes with no cost to the families.  


Someone asked me once if I had ever wondered “Why me?” My family didn’t know it, but I had asked that to myself and God many times. About 10 months into this marathon of a journey in April 2015, I felt that I was meant to walk through the doors of St. Jude so I could help by being a voice for the little ones going through the same thing but couldn't tell people how bad it hurts and help the overall mission to help end childhood cancer. I realized that I couldn’t just keep laying in the hospital bed getting chemo feeling so bad physically and mentally. I had met Rick Shadyac, ALSAC, CEO  and asked him if we could talk. ALSAC is the fundraising organization for St. Jude. I had a business plan to create a fundraising group called Adam’s Army and wanted his advice. 90 minutes later, the plan to give back to the place that is saving my life brought me back to life was launched. I committed to raising $100,000 as part of my Senior Independent Study at St. George’s Independent School. Many people got on board with my vision and became Adam’s Army. So far we have raised about $430,000! We plan to raise at least $1,000,000 by the time I will hear the words “you are cured” when I am 26.


Adam’s Army is much bigger than I can keep up with by myself now. Many people are carrying the vision to a whole new level. We are raising money and our primary goal is to raise awareness. Childhood cancer can and must end. 2 years ago I was honored to help carry the coffin of my best patient friend at St. Jude. Carson Elizabeth Head was just 9 years old. I miss her so much. I have also said goodbye forever to my close friends Luis Aguilar and Hannah Tate. They have no voice now, but we do. I watch my little friends hurt and they can’t tell you how terrible this disease is, but I can with your help. Together we are the “Voice for the Voiceless.”


I wasn't afraid when I was diagnosed. Instead, I quickly learned how important it is to “MAKE EVERY DAY COUNT!" Every single one! Please join Adam’s Army so that we can give these kids, like myself, the chance to have days they can count and add them up until they have a nice long lifetime. www.adamsarmy.net


“No child should die in the dawn of their life.”


                    Danny Thomas


Newest Update

Journal entry by Connie Cruthirds

Dear Reader,

I know this is long. This precious Caring Bridge journal is our story about what happened and where we are now. In this entry we reflect on the challenges of side effects and get honest about mental illness. We often receive notes from others that our honesty helps them, too. We are choosing to hold nothing back so we can remember these things when life’s challenges sometimes make us forget. This one might need a large cup of tea, some extra deep breaths and maybe a few days to wander through. We will never be able to thank you enough for your love and support. You remain in our forever prayers.

Love,

Connie

***Adam’s remission, neuropathy, and other checkups are Feb. 11-12 at St. Jude. Please pray for continued remission.***

Four years ago this time our updates were frequent as the rollercoaster of Adam’s treatment was just 6 months in action. It kept us buckled in for the constant ups and downs. This ride is very different 23 months after Adam’s last dose of chemo. The belt feels a lot looser and we sometimes forget the worst of those days until its backlash reminds us what’s real. Each of us in our family have our own set of memories and current issues. We continue to work through them with great faith knowing our path will never look like it did before July 28, 2014, but appreciate the value of learning more about who we are today. 

These past 4 months brought us to our knees over and over again teaching us more about this journey in the toughest of ways. As hard as things were during treatment, every time something happened we rarely worried as Dr. Pui and the team miraculously found a way through while ultimately getting Adam into remission and completing 30 months of chemo. They were our super heroes with super powers we so easily surrendered to.

Post treatment is another world where we long for and search for the best help for the many side effects and mental challenges that come for Adam from over 1,000 doses of chemo. Skyler, Art and I have also asked for help because of what we witnessed and the relentlessness of all experienced.

Let’s face it. It’s an inspiring story to tell, but the go to ways to conquer the villainous cancer are toxic. Adam’s brain, liver, neurotransmitters/hormones, adrenals, thyroid, pituitary, etc. got slammed. We are very blessed to have another outstanding doctor, Dan Watts at The Renewal Point, working with others to create a plan to help Adam’s body detox and reboot. Frequent testing guides the plan as no two bodies will respond the same.

We knew Adam had a very common DNA mutation a few years before cancer arrived. Skyler, Art, and I have it, too. It affects his neurotransmitters which influence the hormones in his body. They were well managed before treatment, but now almost 2 years since the last dose of chemo, recent results received show that 7 out of 8 remain “abysmally low”. 

How does this look in Adam’s everyday life? From November to early January it manifested as a wicked, scary depression. Hormones that function at levels less than 50% of what’s needed can’t give him the energy needed even on the best of days. No matter how great Adam’s life is and looks like in the moment, his body can shut down while his mind, which also depends on these hormones, tells him things like “you can’t”, “what’s the point”, “It’s too late”, “you’re failing”, etc.

November invited in the beginning of this two month romp through a new hell for Adam we pray never returns. Several things, both wonderful and awful, happened all at once. From my vantage point it looked like his mind and body short circuited. The first was the time change. Why do we do this? Our bodies need reality to follow their true rhythm and changing our clocks suddenly overnight, making it dark at 4:30 telling a body time to sleep, is tough on many people. Just google therapy lamps to see the vast options for people with Seasonal Affect Disorder. Because there have been some physical and psychological patterns emerging over the past few years, we know Adam has developed S.A.D. He returned to Rhodes after Christmas break with one of those nice therapy lights to help.

November also brought semester deadlines, an incredible scholarship opportunity that required a complicated application and interview process, being elected President of Pi Kappa Alpha, final stages of training to run the 1/2 marathon with St. Jude, and then a “flu” diagnosis. Skyler, sadly was diagnosed with the flu the week before, but since both never tested positive, we shared the results with our immunology friends, who thought it was a flu-like virus. It was wicked settling in just before Thanksgiving when he most needed rest and some fun with our visiting relatives. Instead, the “quarantinish” situation brought back many of the worst memories from treatment of all the missed holidays and isolation. 

If you were on the 2018 Adam’s Army team you received an email on Nov. 30 from Adam that included these words: “As many of you know, I've been planning on running the entire half-marathon for the first time and have been training since August. I’ve been looking forward to running beside y'all but sadly a few of my doctors have advised that I cheer each of you on from the sidelines this year. To be honest with you all, mental health as a cancer survivor is something I have struggled with and the last few weeks have caused me to devote the majority of my efforts to helping myself. I say this to you all with hope and gratitude for what y'all are doing for St. Jude and I know tomorrow will be an amazing day for each of you. I plan to be on Riverside cheering the team on so look for me there with an orange Adam's Army banner while you are running/walking!”

Skyler, our Adam’s Army Co-captain did a great job stepping in to lead the team. Her leadership throughout last season was reflected in a special sibling brand of teamwork. Adam; his companion pup,Louie; his girlfriend, Sophia; and I placed ourselves by the Mississippi river on that way too hot December day and cheered on all 108 teammates. It was such an unexpected blessing to get that perspective and watch all the hugs and tears happen while Adam did what’s sometimes the hardest thing to do - take care of his well being even when it meant saying no to the best of things.

It would have been so easy to say to the team that he was recovering from the “flu”, but Adam wants to bring attention to mental illness. That’s why I’m writing this in such detail. We are not just physical beings and the more we don’t talk about the state of our whole being the more we add a layer of shame and silence. Increases in our world of poor physical health, myriads of addiction, suicide rates, depression, etc. often come because of our silence. We are mind, body, spirit beings. No broken leg or cancer diagnosis is more important than a mental diagnosis like depression, generalized panic and anxiety disorder, etc. We all got something and the more we can find safe ways to be honest the more we can help and support each other. More power to you, Adam for putting your truth out there.

Thanks to his on campus support led by Melissa Butler and supported by compassionate professors, Adam returned to Rhodes after Thanksgiving patched together just enough, he hoped, to complete several papers, a project, and exams. He also had his final interview to compete for the chance to represent Rhodes as a candidate for the Truman Scholarship. Here’s how that played out:

https://news.rhodes.edu/stories/three-vie-coveted-truman-scholarship

As if the above wasn’t enough to leave all of us tangled in triage mode, on the last day of exams he woke up in immense pain. His thinking was that it was all the stress so perhaps a massage would help. Soon we realized it was as if the evil cousin of that flu like virus had arrived. Until then none of us had heard of Post Viral Syndrome. Apparently the hellish components of illness can unlock secret doors that welcome a backlash of a whole new variety. Unfortunately for Skyler, she was tracking a week ahead with this same physical illness, but their symptoms were slightly different until this post oral thing happened. As a Mom, even with all the St. Jude experiences, this was worse than awful to witness. For 7 days they both were in total body pain. Heating pads and Advil were the only relief. I truly thought it was never going to end and ached for both of them.

Adam’s worst pain arrived just as he finished the semester and needed to move out of the dorm for break which is quite a process. When Adam and I got to the dorm he was feeling horrible and had to get to a last minute doctor’s appointment in 30 mins to check his blood. As always, right about the time we were both at our breaking point, in walks his friend Joe asking to help. Joe was one of those we’d cheered on the week before who struggled with the heat while running the full marathon. Within minutes 3 more Rhodes friends stepped in. Then his car wouldn’t start and security showed up in minutes as all involved got us to the doctor in time. Grace in action is true blessing.

Why the detail? We need to not forget the tough times especially when this current path seems to be about noticing the patterns, learning to change the ones he can, sense when he’s in danger of falling into the black hole of depression again, and grow up in a way that involves learning how to care for the body he’s been given to live out this second chance at life.

Here’s a bit about what we’ve learned:

~Learn your limits and honor them. First, know we all have limits. Adam has been able to do so much despite limitations that he hadn’t met his “wall”. We all have one. His happened in the midst of amazing moments and tough times. Regroup. Rethink. Do the next right thing. For Adam that meant getting honest about how much energy he currently has and where he needed to invest it. When invested well it can actually add more energy to our bodies where it had been being drained. His first truth was knowing that it was an honor to be asked to serve as president of his fraternity this year, but he knew there was someone else meant to take the position. Adam resigned and the new leader stepped in. Next he looked at every position he has on and off campus. He chose the ones where he could best serve now and that best serve the future he’s aiming for. He resigned from another position and chose to not add anything else. 

~Ask for help- supplements and meds can only do so much. When crisis occurs consider all options. You are worth it. First tell someone. Anyone. Adam sought help from the Rhodes counseling department who referred him to a new program at Lakeside called The-Landing. It was created for college students and young professionals. I can’t tell you all it does, but it is a place that offers inpatient and intensive outpatient treatment for depression and anxiety issues. We want the community to know this exists. We went there knowing Adam needed immediate help for an acute situation. Adam sensed that he needed a different plan for treatment than what was offered, but their support and kindness were key to discovering the right path. I did see that our visit there and the evaluation they offered thankfully triggered some truths and leftover pain from his St. Jude experience that needed to be voiced and healed. Adam allowed that to happen which opened up even more helpful conversations

~Check out the many holistic healing options- Learning new things that can help our mind and body through tough times can give us instant options to shift a downward spiral, negative thinking, panic attacks, etc. Adam was willing to do anything he could to get better. When our friend and yoga/mindfulness teacher, Susan Waits, offered her support he accepted it. He spent part of his break learning restorative yoga and mindfulness techniques. He invited me to go to the sessions with him. In one of them, Susan Waits had us progressing through a series of simple moves while thinking an affirming thought. Mine involved the word “peace”. Our breaths were slow and deep, our movements were nice and flowing. (Note that neither of us had much yoga experience.) Then she asked us to switch the affirming thought and choose a more negative thought that often invaded our mind and everything changed instantly! When we did the same movements while repeating this negative thought in our minds, Adam noticed his movements became very fast. I noticed I held my breath the whole time. The second we shifted back to the affirming thought we returned to flow. Pausing to breathe and notice what our mind is telling us is key. Adam’s depressed mind was keen on spewing limitation and telling him what’s the point and go to bed. In actuality he got all A’s last semester. Baffling. Truth. We get to choose what we want to make a situation mean. Adam also went for acupuncture with Mike Falcone, varied his exercise, and shifted his nutrition. It was only through asking for help that Adam began to see the slightest opening in his darkness that began to let light in. From there the path out began to be illuminated one step at a time. 

Perhaps I shared this earlier, but Adam found this article last summer. St. Jude’s Dr. Tara Brinkman’s, findings are spot on in many ways especially for teenagers whose bodies get cancer and then face the side effects of treatment.

https://www.healio.com/hematology-oncology/pediatric-oncology/news/in-the-journals/%7B54647f41-cb61-4fd9-ab71-111592c3dec3%7D/interventions-crucial-to-offset-negative-impact-of-psychological-symptoms-on-childhood-cancer-survivors

After two months of illness and depression, Adam has begun to feel better. He continues with his commitment to limit his chosen commitments so he can recover. Dr. Watts, Adam’s uncle, has added new targeted supplements in response to recent blood and hormone tests. We already see a noticeable difference. Adam’s meeting regularly with a counselor at Rhodes and has a new psychiatrist involved monitoring an antidepressant that will help his mind reboot until his body can take over more fully.

Adam will spend February 11 and 12 at St. Jude to make sure his leukemia remains in remission, test the status of the neuropathy in his legs, and take a multi-hour psychological test that is part of the research done at St. Jude. I’m given one at the same time to reflect my observation of him. Please pray for continued remission. He’s still in relapse risk for the next 5 1/2 years. Adam remains confident his cancer is gone for good so I follow his lead and do my human self best to not worry.

This fills the gaps in the journey from the past few months. Thank you for making your way through the gazillion words. 

As mentioned earlier, Adam let go of some roles so he can more intentionally focus on others. In addition to his physical and mental healing, academics, and Rhodes leadership activities, Adam has decided to work with Adam’s Army to complete the fundraising goal we began in his senior year of high school as a $100k project that evolved into a million dollar goal. The distance to the goal is $300k. We don’t have a plan to reveal yet and honestly it will take many miracles, but Adam is determined, believes in the team, and everyone that has helped this cancer journey become something we never imagined it would be.

Step one begins on April 27th in Nashville, TN at the Rock-N-Roll Marathon. Since Adam was unable to run the 1/2 in Dec., a friend at ALSAC offered an invite to shift his registration to Nashville and he accepted. As part of his mental and physical health plan, he’s slowly begun training again to run 13.1. Adam and Skyler were born in Nashville so it’s the perfect place to begin the final steps to reach the goal. If you would like to meet him in Nashville, tell a friend there, or support the mission, here’s the team link.

http://heroes.stjude.org/adamsarmynashville2019

He also decided to set a new goal that he has wanted to happen for a long time - run the full marathon in December. Here in February, especially given the many words above, it feels like the biggest stretch goal he has set yet, but he wants to go for it, so we stand back and watch it unfold. His medical team is very involved. Adam will see how things progress and is committed to listening to his mind and body. He hopes this will inspire others to join him in his determination to offer St. Jude the next $300,000 because we all know childhood cancer must end. The above 2,985 words are part of the reason why.

Here’s his marathon donation page link. Team signup resumes May 1.

http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2909258&pg=personal&fr_id=105980

We will update you after the St. Jude checkups. Thank you for you compassion and support. You remain in our family’s prayers of gratitude.

 

 

 

 

 

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