Tony’s Story

Site created on January 25, 2024

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Stephanie Johnson

We're home again! 

The last two days (Monday + Tuesday) have been the hardest on me (Stephanie) personally. I've realized that I need to break my time up at the hospital a little more, and that 30 hours in 3 days is not healthy for me. Monday, I woke up at 3:30 am in the midst of an anxiety attack. My mind starts racing about everything I haven't done- house work, regular work, eating well, breathing, etc. I realize he will be home soon and I want everything perfect for him, and I get overwhelmed. After talking to Tony we agreed it would be best for me to stay home and just regroup. Take a little time for myself. My heart goes out to all my fellow caretakers. People forget just how hard this journey is on us as well. 

Yesterday (Tuesday) we found out he would be discharged once he was done with chemo for the day. He had 2 IV meds, and 1 spinal tap med. His doctors are SUPER happy about his progress from his blood work to the size of the mass (practically gone!), he is right on track! WOO HOO! We even got some laughs and jokes out of Stacia who we found out likes college basketball like we do. For those that don't remember Stacia is part of his Oncology team and she is the first to tell you she is an expert at worrying. So when we see her in good spirits, we know things are going great!

They predicted he would be out around 4:30/5:00 pm but around that time we were surprised with ONE more med- Mesna. Mesna is a preventative to help protect his brain and kidneys, it only takes 15 min to administer, BUT they couldn't start it until 6:30!! NOOOOOO. So we had to muster up as much patience as we could. Once that med was done we RAN out there! 

We crashed last night, and it was much needed for the both of us. Being in the hospital sucks, and being home alone sucks. When we are back together you can feel the weight lift, and we are able to relax again. We have always loved each other obviously, but we have found a greater appreciation for the small things we do for each other- like snuggles. Little things just mean so much more to us now. 

What the next month looks like: 

1. Today (Wednesday)- he has blood work, a WBC booster shot, and 1 chemo med that takes 10 min. Oh, and I get the pleasure of putting his eye drops in 4x today! Luckily, just for today! 

2. Cycle B officially ends March 22nd but he has completed the chemo protocol so the rest of the time is spent going in twice a week for blood work. 

3. Round Three (Cycle A again) will start around March 23rd (happy birthday sister wife Julian), but he an do the first set of meds as an outpatient at the Cancer Clinic so he won't officially be admitted back to the hospital until April!!! 

As always thank you all for your love and support! 

Tony + Stephanie 

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