Lightning strikes Thrice

This is by far the hardest post I’ve ever written to date. I have spent the past year healing from my time with Wally and getting used to being a normal mom again – back into old routines, less doctor visits, working on my strength, etc. I knew I wanted to start writing again and was thinking this would be a good time because this time last year I was finishing up my time in Dallas and wanted to talk about how far I’d come since October 2022. Then Tuesday happened.

I turned 45 on October 15 this year. It was a big celebration for me. This is the year I passed the five year mark of surviving breast cancer AND the three year (curative) mark of surviving my bone marrow transplant after my AML. I celebrated by taking a trip to the beach with Gus and we stayed with our friends and had a glorious time. (October is my favorite time to go to the beach) I got home, swapped my beach bag for my mountain bag and my girlfriend and I set off to watch mountain sunsets, drink wine, and eat great food. Since I got home from those trips I have gotten the news that six people I am close to have passed away. Two were young people. That was not easy at all.

Gus has been watching Spidey and His Amazing friends lately and had been planning on dressing up as Spidey to trick or treat for months. The week before he had been having some off and on low grade fevers in the afternoons – most really didn’t even classify as a fever. I also just had a gut feeling that something was off and wanted to get some bloodwork run, so I took him on Monday and asked for a slew of labs. We got up last Tuesday morning, got our Spidey suit on and met up with our friends in Milledgeville and kept up our tradition of trick or treating in the morning. After filling both the main and overflow bag with goodies, we went to grab a bite to eat and take me to physical therapy. As soon as we got back in the PT room I got a phone call from the doctor’s office. It wasn’t the nurse, it wasn’t the medical assistant, it was the doc. My stomach sank when I heard her voice – this wasn’t the first time I had gotten one of these calls. She said “his hemoglobin was pretty low…” I stopped her and said, “please just read me his numbers.” His hemoglobin was 4, his platelets were 18 (and I’ll spare you the other numbers bc that is revealing way too much of my nerdy side). I told her “I know what this means, I know what to do, please email or text me his bloodwork, thank you.” I literally told her thank you for telling me my kid has cancer – but I am a polite Southern girl and it isn’t her fault. I immediately called my BMT team and told them what was up – I said “I’m texting you his bloodwork, call whoever you need to call and tell me where to go – we are on our way” I told Gus my tummy was feeling really bad and we weren’t going to stay. I started home and called Marsh (who was on his way to an appointment) and told him to turn around and go home and pack a bag.

As usual, my superhero mother in law dropped everything and came over to hold down the fort at home. We threw stuff in a bag. I made sure I had enough meds for several days because I knew we weren’t leaving, and we hit the road to Augusta – we’ve worn our own path between our house and the hospital – but this had an eerie deja vu feeling to it. We had no words. It seemed unreal. Multiple texts later we knew that the ED was eagerly awaiting our arrival. We got checked in and I was holding it together until Dr. Kota walked in. I fell into his arms (I know that kinda sounds weird) and told him I couldn’t do this. He did his usual and calmed me down with all the nerdy information I needed. He asked what he could do and I just said “get me out of this waiting room.” He went to talk to someone and a few minutes later we were back in a room. They repeated all the bloodwork and we spent the night in the PICU while they figured out what we were dealing with.

So here’s the deal. Gus has leukemia. There are some more fine point details about genetics and subtypes we are waiting on but we know enough to know that we are dealing with B Cell ALL. This is a way better situation than my leukemia was. There is an over 90% cure rate in kids. We have a plan and have already got going crushing it. Here is a synopsis of what we have done this past week (at least as much as my brain can organize right now):

This first month is the most important. His response to the first month of treatment determines the course of the rest of the next three years (yes, this is going to be a three year process). Once we determined the type we began treatment. This past Friday he had his port placed and got his first dose of chemo directly into his spine while he was in the OR. Later that evening he got his second dose through his port (which was already accessed during surgery). Gus was actually so excited about getting his port because this meant he got to get rid of those stupid IVs and no more sticks! Woo Hoo! Today is Monday (I think) and we are about to start the next chemo. Just like his mamma he has shocked them with his labs. When we checked in there were 60ish% blast cells in his peripheral blood (these are the bad cells that have gone rogue and the blood draw from his IV) – because of that we expected that his bone marrow would show 80-90% blasts – not us though, that was still in the 60s. We also got good news that there were no cancer cells in his spinal fluid (which meant we got to get rid of one chemo drug that is heart toxic). After his first two chemo treatments the blast count went down to 5% and today it was 0%. Everything is moving in the right direction.

Honestly I have no words. It’s hard to believe this is my real life. I’ve been mad. I’ve yelled at God a lot over the past week. Thankfully I have a God who can take it and loves me all the same. There have been a few times this week that Gus has taken out his anger on me, I’ve absorbed a lot of rage (induced by steroids mostly). Not once has it made me angry at him, I have only wanted to take it away for him, hold him through it, not punish him for letting it out on me – and I believe God is the same with me right now. I am Gus’s safe and soft place to land and let it all out, God is mine. And believe you me, I’ve had some words…..lots of “I believe, help my unbelief,” “if it be your will, let this cup pass from me,” and a large number of expletives. My text messages over the past week have been full of those same expletives and more from my friends. NONE of this makes sense to any of us. If anything has ever tested my faith, this is it.

I really could go on and on with stories of the past week – my hospital family has all swarmed around and held me up when I literally had nothing left in me. But when you hear me say that oncology staff are made of magical things, you need to believe me. The adult BMT folks as well as some of my breast cancer nurses have all descended on pediatrics – and they all have questions and opinions. It’s great. They have gotten me coffee, snacks from the grocery store, they all know my CFA order and will show up with it without me asking, and of course, King Gus has gotten lots of special treats from them as well.

So far Gus is overachieving like his mamma. His response to chemo has been spectacular and better than expected. We have not had much nausea yet and been able to control most of those kind of bad side effects. Bone pain has been our biggest enemy so far – and with his mamma knowing EXACTLY what that feels like, it absolutely breaks my heart. We had a hard time over the weekend getting his pain under control but seem to have a good handle on it now. How can you help? That is the million dollar question that everyone keeps asking me. PRAY is the obvious. I ask that we all pray for COMPLETE remission in month 1. Is that a big ask? Yes. Can God do that? Heck yeah. Is that His plan? Let’s find out together.

Now that I have put it out there what is going on, I will try my best to give updates on social media through my blog. Ask all the questions you want, I don’t mind. Gus and I talked about making him a wishlist on Amazon and Walmart later today and/or tomorrow – when we finish, I’ll post a link for everyone. The kid does love some mail. The plan right now is for us to go home on Friday after his chemo that day, so I would say not to try to mail anything to the hospital. Our home address is
1839 Covey Rise Farm Road – Sparta, GA 31087

If you have texted me, I’m trying to respond but have the wonderful problem of being so loved I can’t keep up with responding. I am not talking on the phone to keep things calmer for Gus. My peeps here are bossing me around and making me take my meds and eat and drink and all those things that seem of low importance to me right now. Thank you all for praying. I will do my best to keep everyone posted.