The only way out is through.

Sometimes my Timehop app can be really hard to look at. To quote my sister, “Time is a weird thing with grief.” Seeing things even from just one year ago can be so hard. Sometimes it’s hard to remember a time before cancer. But sometimes, just the right thing pops up and gives me the encouragement I need. Recently I’ve been feeling so tired and overwhelmed. I give everything I have to teaching full time (online), being a parent, being a wife, and being Adeline’s advocate. And honestly, it’s been heavy lately. But then this gem popped up last week. 

I was training for a race and having a tough run. Todd and the kids had tracked me down to cheer for me. It doesn’t seem like much, but even that small moment was enough to give me the energy and encouragement to finish. In the recent days when it felt like one of “those runs,” lungs burning, legs like lead, every step requiring intention, it was a good reminder that even the hardest runs eventually end. That exact spot in the picture is 2 miles away from home, and mostly downhill. 

Adeline is one week away from the end of delayed intensification and one week away from finishing frontline, the hardest and most intense combinations of chemo protocols designed to knock out the leukemia and keep it away. After DI comes maintenance, the long downhill. The “easy” part of her chemo protocol. I have been looking forward to this for a while, and so has Adeline. In fact, I had completely overlooked DI and thought we were starting maintenance back in November. 

Then today we got some news at Adeline’s clinic appointment. Her oncologist has been mulling over her case and is not feeling comfortable moving straight into maintenance. Adeline’s leukemia is very high risk for relapse. There is no “standard of care” for her cancer because there are not enough cases to gather data from. Dr K (along with input from experts around the country) came together to determine her road map for treatment, and so far, her cancer has responded favorably. Which is good! It’s not acting like a very high risk cancer. But, Dr K said that we don’t want to be tricked because we *know* that it is a very high risk cancer. So he proposed three different options for Adeline’s next phase of treatment. 

1) Continue on to maintenance 

2) Repeat the interim maintenance phase (IM2) before maintenance 

3) A 3 round, super intense, throw everything we can protocol aimed specifically at addressing the myeloid markers. When I say this is intense, that is an understatement. (Triple IT (spinal) chemo, super high doses, new meds she hasn’t had before, and daily shots for two weeks straight).

Why present these options now? I know Dr K and I know how invested he is in Adeline’s care (and all of his patients’). I know that getting her well probably keeps him up some nights. And I know that he continues to seek the best for her. That’s why we’re here. Because he’s trying to ensure that we’re giving Adeline the best treatment possible. The hardest thing with Adeline’s treatment has always been that there is a lot of (educated) guesswork involved. Dr K said as much today. They don’t know what will lead to the best outcome because there is no data on cases like hers. And before you doubt his expertise, Dr K did his fellowship at St Jude’s and worked there for many years before settling in central Texas. He is one of the best of the best. And he is constantly consulting with the top pediatric leukemia specialists on Adeline’s care. 

Of course, we will trust Dr K and his recommendations, but he is also giving Adeline (and us) input. He continues to consult with other doctors and will discuss more with us next week. When I asked Adeline what she wants to do, she prefers option 3 even knowing how hard it will be on her body. One of my favorite running mantras is “the only way out is through.” That’s how I feel now. We’re not as close to the end as we thought, our legs are heavy and our lungs are burning, but the only way out is through. So, we press on. One step at a time.