We have some good news to report!
We are officially in the Maintenance phase of treatment! This is a milestone!
Yesterday, Evan went to the hospital clinic for his last escalated dose of IV methotrexate and IV vincristine. While these medications and their increased doses were a little rough on him, he did well. Lab work was well within the limits of normal for him, so the treatment was possible.
So now we enter maintenance. Since diagnosis on July 29, 2020, we have been looking forward to this day. The treatment regimen thus far has been rigorous. His updated stats are:
Hospital admissions: 5
ED Visits: 2
Unplanned clinic visits: 1
Doses of IT and IV chemotherapy: 54
Oral chemo (MP6): 28
Oral Chemo (thioguanine): 14
Oral Steroid doses: 70
Surgical Procedures: 16
PRBC: 2
Platelets: 4
IVIG: 3
Oral Bactrim: 282 doses (pneumonia prophylaxis)
To say Evan has been through the ringer is an understatement. Yet, he is a happy boy. Of course, he is apprehensive about appointments, but after being poked countless times, he is now at a place where he doesn’t cry as much when it happens. Of course, some medication helps that too.
His next appointment is in 21 days. That is the longest he has gone without a doctor visit since the beginning. Maintenance will consist of daily oral chemo pills, monthly appointments for labs and IV chemo, LP’s with IT methotrexate every three months, and bursts of oral steroids every so often. Compared to the past year, it sounds like a cake walk, at least on paper. Maintenance lasts for one year.
We continue to pray for continued remission and no relapse. We ask everyone to please continue to pray for Evan. Things are looking good, but we aren’t really out of the woods yet.
Frequently, I think back to that phone call. The one where the pediatrician said the most horrible words we have ever heard. All the emotional trauma from the next few days wells up again. It truly was the worst time in our lives. The very next morning we met the care team at ProMedica Children’s. There were eight or so people in the room (it might as well have been one person or maybe 300 people). The doctor explained what our lives would consist of for the next two to three years. He laid out the plan as the experts know it. The medications, the procedures, the appointments, the uncertainty.
As I have said before in these updates, the care has been amazing. We are thankful for the research and knowledge that has come at the cost of hundreds, maybe thousands of children who did not survive the treatment before us.
Life is funny. And surely, everything is temporary. We are a mist in time. Things come and go. The world is in flux and we are just bobbing along hoping not to drown.
If absolutely nothing else comes from Evan’s illness, we have an even more awesome knowledge that God is real, He is near, and He will love us through anything. He has always been there. And He will always be there every step of the way. While this world and everything in it slips away, it is so reassuring to hang on to His mighty hand.
A nurse we used to work with passed away today. Robin was a unique person. She came to our ED after thirty years of experience in a larger hospital in Jacksonville, Florida. During her interview we asked those silly psychological questions. One was “what do you do to de-stress from work”. Without missing a beat, she looked at us dead in the eye and said, “I drink and I smoke”. For a few seconds, it took us by surprise, yet it really made sense. We hired her. During my time with Robin, she had this “been there, done that” attitude. Nothing really rattled her. As someone we also worked said Robin was “wickedly funny, sassy, and completely irreverent”. She cared for her patients but in her own way. The old- style of doing what was necessary and she didn’t nurse the satisfaction scores. But people loved her. She was knowledgeable and ended up being a great friend to many. She moved here to care for her elderly parents, and if I’m not mistaken, they have died relatively recently too.
I guarantee while Robin took her last breath, she wasn’t worried about how much money she made or doubted whether she made the right decisions in her life. She moved here out of love. She lived well and had fun. I’m sure she wasn’t worried about her status or was disappointed about not having another career path. I believe full well, that when faced with her own eternity, she chose to spend eternity in heaven with her parents and friends who have gone before. God who is our shepherd never wants to see one of us stranded in hell for eternity. I believe she caught a glimpse of paradise and entered it willingly. Rest in Heaven, Robin. Gone too soon, but we are sure better for knowing you.
We want to especially thank:
Mike Foss
Eric Jackson
Carissa Luxon
Mariah Sayler
Nichole Borck
Alex Betts
Wayde Bockert
Jaime Roberts- Kaminski
Thank you for the prayers, the card and the gift. We appreciate you more than we can ever relate.
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