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May 19-25

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It's May 4, 2024. That's it. Jackson is officially "off treatment".  This morning, Jackson took his last dose of the daily Mercaptopurine (oral chemo) he's been taking  every single day since November of 2022. It was a bit anticlimactic, since he hasn't really cared about any of the 'lasts' we've been celebrating these past few weeks. But, it's done now. The day we've been looking forward to since the moment we received his diagnosis has come, and there are more feelings now than I know what to do with.

As luck would have it, Kevin was driving through the Nashville area yesterday, so we were able to pick him up at a truck stop and have him spend the night at home with us. Both Kevin and I felt more sad than we expected we would this morning. I hate not knowing why I feel this way, but as a wise brother of mine explained, it's probably because we are now going through another huge change. Our minds have been royally messed with these past 2+ years. I can't tell you how strange it's been to have a kid being treated for cancer look and act just like any other kid. You may recall, he's technically been cancer free since 30 days after he was diagnosed- this is the goal of leukemia treatment, and for all intents and purposes, Jackson met that goal with flying colors. We don't broadcast this a lot because people don't seem to understand what the big deal is if he hasn't really had cancer this whole time. The big deal is that he's still had to undergo all of this chemo just in order to prevent the leukemia from coming back and hiding out in places like his spinal fluid. The chemo has done a number on his immune system, throwing it up and down for no discernible reason. We went from a life threatening condition to cancer free in the span of a month, but then had to grapple with the fear of it coming back for 2 more years. I remember the night we took Jackson to the ER and received his diagnosis, I asked Dr. Mahoney if this cancer would kill my baby. She was diplomatic with her answer, but ultimately explained that the survival rate was incredibly high and this would not be the end for Jackson. It was hard to believe then that we would end up with such an incredible son. He has wowed us throughout this process with his ability to be poked/prodded and questioned to no end about how he's feeling. He has zero fear when it comes to doctors and the hospital which makes me very very grateful for all of the absolutely incredible doctors and nurses we had at Vanderbilt. 

Like all toddler parents, we've been concerned about his growth, his eating, his development and learning, but we've also had to keep a close eye on any tiny illness lest it turn into a fever that was caused by an infection in his port. We've been worried about focusing too much on Jackson and not enough on his sister Isabelle. We keep wondering if there are going to be any long term side effects to his treatment (such as infertility, stunted growth, future cancer, or learning disabilities). While we will still have some of these worries, everything is shifting to a new life. We now get to think of him as just another normal kid and can push cancer a bit more into the background. A few things around the house are changing like taking down the huge bin of medicine we've had on the top of the fridge this whole time. We unpacked our 'go-bag' suitcase that's been in our bathroom for 2 years, and I'm going to give away his drawer of port shirts to other kids who need them now. He will need to continue taking the antibiotic Bactrim for a couple months as his entire body adjusts to being off chemo for a while, but we won't see the oncologist until early June. I look forward to the day when Jackson can fully grasp the intensity and severity of what he went through as a toddler. But, maybe it will never feel that intense or severe for him... He's already lived it, and will survive to tell the tale the rest of his life. I suspect most of the stories he will tell his friends and his kids someday about having cancer won't be memories so much as  retellings of stories that his family tell him throughout the years. Hopefully he just looks back on his childhood and smiles at good memories. 

I want to send one last thank you out to everyone who has read my incoherent ramblings and musings here. I'm sure there were many annoying typos and tangents that didn't make sense, but I appreciate you tuning in to see how Jackson was doing. We could not have gotten through this time without the support and love from our families- most notably the four amazing grandparents: Sandy, Jim, Robin, and John. Thank you to my brother Scott for being an amazing listener, and thank you to all of you donated to our go-fund me and other fundraisers. We would not have been able to survive without that extra boost of financial help.  A special shout out to all the people who sent us videos of their kids way back when- Jackson still loves watching his 'friends' send him messages of luck. To everyone who offered to be there for us, we appreciate it more than you know. 

I may continue to post as we go through Jackson's checkups every 3 months for the next few years, but I imagine these entries will begin to dwindle...  Here's to hoping we see an end to cancer as we know it in this lifetime...

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