Well, it is September 23, 2022 and it is time for an update on our little warrior’s status. It has been quite some time since the last update, so an update on his status is long overdue. I hope you find encouragement in this message.
As most of you know, Evan was diagnosed with Pre- B Cell Acute Lymphoblastic Leukemia on July 29, 2020, in the middle of a global pandemic. He had been showing a plethora of symptoms including back and leg pain, bruising, weakness, fatigue, activity intolerance, lack of appetite, weight loss, and more. I remember that phone call like it just happened; “your son has cancer”. The following seconds, minutes, days, months, and years have been a whirlwind of emotions, worries, prayers, appointments, procedures, and a never-ending nagging feeling of fear. Personally, I learned a lot about faith. How much I thought I had and the realization that I needed a whole lot more. I was always taught that you never ask God why this or that happens- just have faith. But I have learned that our God can handle those questions. Our God is bigger than a mere mortal asking Him why something happens. And sometimes He answers that question, and other times He is silent. Having dealt with grieving family members and specifically parents for almost three decades in one form or another, the prevailing question is always “why?”. But, in our human form and weakness, we do not ever have the answer. I am more assured now that the Creator of this universe does. So go ahead and ask. It’s ok.
Evan received his last dose of IV chemotherapy this month! He was scheduled to have his infusion port surgically removed last Friday, but he came down with a cold (not covid) so the procedure has been postponed. The most recent clinic visit this week went very well. His labs are completely normal for a kid who is still taking daily doses of mercaptopurine (oral chemotherapy), weekly doses of methotrexate (oral chemotherapy), and three days a week Bactrim (prophylactic antibiotic). His WBC is around 2,000, which is right where they want it during treatment. All other essential blood components are normal.
The best news is, Evan’s official last day of treatment for PreBALL is October 13! On that day he- and we will “ring the bell”! After that day, the only medication will be Bactrim three days a week for continued prophylaxis for about six months while his immune system rebounds. No more chemotherapy though! Sometime between now and then we will reschedule his port removal surgery. He will have to get labs every month for about a year, then every three months for a year or so, then every six months for a year, then every year for a long time. Remember I mentioned that nagging feeling of fear earlier? Well, the longer Evan goes in time post-treatment, the chances of relapse are decreased year over year, but the chance is never zero. All we can do is pray.
Evan’s nearly final statistics for his treatment of the scourge of cancer are:
Hospital admissions: 6
ED Visits: 2
Unplanned Clinic Visits: 2
Doses of IV and intrathecal chemo: 64
Days of continuous 24/7 Blinatumomab (experimental chemo): 56
Oral thioguanine doses: 14
Dexamethosone doses (steroid burst): dozens and dozens
Mercaptopurine (oral chemo): thousands
Methotrexate (oral chemo): hundreds
Covid positive x 1
Surgical procedures (port implant, pending removal, bone marrow aspiration, lumbar punctures): 21
Blood Products:
PRBCS: 2
Platelets: 4
IVIG: 3
So, some people think sports players or movie stars are heroes or they look up to other people who make them feel good for the moment. Ha! I’ll show you a kid who successfully battled the monster of cancer; doing so during a global pandemic, who got up at 0400 to go to the hospital for chemo instead of going to school, who suffered debilitating side effects from the poison of chemotherapy including nausea, vomiting, constipation, diarrhea, hair loss, pain, mouth sores, isolation, fear of the unknowns, and more. And for the most part, Evan didn’t complain, or even ask “why me”. Kids are resilient. Evan is my hero. Evan didn’t deserve the specter of cancer, but he handled it like a master. His faith grew too.
The world we live in is fickle, fallen, dangerous, sad, ever-changing, and the further we go in time, it will only get worse. If you are reading this, you probably have already gone through storms in this life. Some of you maybe not. But I’m telling you no matter your status, your affluence, or your faith, your storm is only a breath away. I pray no other parent ever has to get that phone call “your son has cancer”. I pray I never have to tell another parent, “I’m sorry to tell you, your daughter has died”. But the reality is, the storm is on your horizon. It will happen to you sooner or later. No one is immune. “No one gets out of this life alive” as the old saying goes. It’s true. Recently, two brothers died at BP Toledo just doing their jobs, leaving behind wives and young children. A senior at Oak Harbor High School took his own life unexpectedly. Marital statuses are evolving and changing. Russia is threatening nuclear annihilation. Our president is weakening our country to the point that we are no longer a superpower in the eyes of the world. Name your topic, it is all hanging by a thread. How will you handle it?
Tragedies, trials, and diagnoses can change us. I fully believe that such things are “attention getters”. Maybe we are heading down one path when God wants to reach us as loud as He can to change our course before we self-destruct. Some learn this lesson, some do not. Life is funny and it is an adventure. The things we go through should indeed change us to make us realize what we have or what we had. To appreciate every second while we have it. To increase our reliance on a power much greater than we are. To rely less on our fallen hearts. We cannot control life, but we can talk to the One who can navigate it.
September is Childhood Cancer Awareness Month. During Evan’s treatment, we saw other kids who were much, much worse off than Evan. Some did not survive. Please say a prayer sometime this month for those who are still suffering and for the families of those whose little warriors did not or will not make it through. Pediatric cancer is particularly evil. Pray against it.
September is also Suicide Prevention Month. Suicide is an epidemic. Military, first responders, teenagers, adults, kids, you name it are killing themselves at an alarming rate. Suicide, like cancer, doesn’t care how much money you make or what color you are. People are hurting. Maybe you are hurting. We all go through incredible stress in this life. I get it, I am going through it too. Healthcare workers, first responders, and the military are particularly in jeopardy. Not only do they have to deal with everyday stresses like cancer, divorce, bills, kids, etc, but they also see the worst humanity has to offer. Just recently I was able to talk to someone for the first time about an EMS call I went on in 1999 where the drunk father t-boned a semi-trailer at high speed, decapitating himself and exploding his blood and brains all over his four-year-old who was illegally seated in the front seat and heavily entrapped. Here was a partially scalped, polytrauma four-year-old covered with the alcohol-laden blood and criminal decisions of his father in physical pain, asking what happened to his dad. “Where did daddy go?”. He kept frantically asking where his dad was until we chemically sedated, paralyzed, and intubated him for the ride to the trauma center. I repressed that particular incident for over twenty years, but it manifested frequently. And that’s one case out of thousands over thirty years of emergency medicine in one form or another. I’m not special. First responders, etc., deal with this and worse, every single day. Some do well and some don’t make it out alive.
Please take care of yourselves and each other. If you are in a career that subjects you to trauma, talk to someone. If you have kids and they aren’t acting “like themselves”, talk to them. Hug them. If you are feeling stressed out, talk to someone. There is no shame in talking to someone. Resources are out there. You are not alone.
As for Evan, he is a survivor. I am a survivor, no matter what this life throws at me. I will not bow. I will not give up. Some days are dark, some nights are darker. But I know the One who can help and is the source of my strength. I am not perfect or “holier than thou”. I’m a dirty rotten sinner. I’ve gotten dirty in life and bloody on the job. Life is dirty in this fallen world. There is only ONE WAY to get clean.
Thank you to all those who have read these updates, who have sent money, prayers, kind words, encouragement and so much more during Evan’s treatment. We had support from so many people around the country during Evan’s fight. It would have been so much harder to deal with without your kindness and prayers. During stressful times, you sure can tell who your friends are, and maybe more importantly who is not. For those who reached out with gifts, food, money, prayers, thoughts, inquiries, and kindness, I earnestly thank you. Just like those who didn’t have much to do with us during this time, you will never be forgotten. Special thank you to Dr. Palmer, Dr. Strunk, Dr. Stein, Dr. Dargart, the anesthesiologists, the nurses, and the secretaries of Ebeid Children’s at Toledo Hospital for all your expert care. Special thank you to the researchers at the Children’s Oncology Group and all the parents who consent to the research. Special thank you to Sterling Rahe and “Santa” with the Toledo Fire Rescue Department, Carroll Township Fire/ Rescue and Police, and Troy Boze with the University of Toledo Hockey team for an unforgettable Christmas. Special thank you to Dr. Peter Antevy. Special thank you to Gia Lynch, Joelle Mullen, and Dr Magro- you all are amazing humans. Special thank you to Nikki Wilkins. Special thank you to Toledo Police Chief George Kral for the special visit, for helping facilitate the heroes repelling Ebeid Childrens, “Operation Santa’s Sleigh”, and for donating tons of toys to Ebeid Childrens Cancer Center (not just for Evan but for all the kids). You have no idea what that all means to a kid- and his parents. Special thank you to the Ronald McDonald House. Special thank you to those who helped organize the gun raffle/ fundraiser, Harris- Elmore Fire, and those who bought tickets. Special thank you to the leadership team and staff members of ProMedica Air and Mobile who showered Evan with gifts and donated hundreds of hours of ETO. Special thank you to Eric Jackson for being caring and understanding during our storm. Special thank you to Chris Ebright. Special thank you to Carl Arnold for the words of wisdom. Special thank you to our neighbors who helped us more than you know. Special thank you to Seeds 4 Needs. Special thank you to Spencer and Jess Norris of Intrepid Helicopters. Special thank you to the principals, teachers, and nurse at Benton Carroll Salem School District for helping Evan assimilate and learn during this time. Special thank you to the Outpatient Pharmacy at Toledo Hospital- those people are special! Special thank you to the dozens and dozens of others who called, texted, asked, helped, donated, and messaged. There are just too many to mention. Sorry if I didn’t give you a specific shout-out, but you know who you are! You are forever in my heart.
I will update as needed. Have a blessed day and enjoy every second.
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