I feel it is time to finish up this book with the final entry on Harper’s status, so here goes.

Harper had her 3 month scans last week and we got the good news that she is still cancer free!!!!!  She will continue to do these scans every 3 months for this first year, and then 6 months for the following year and then yearly after that until they decide she can go longer.  Turns out, waiting for test results is just as anxiety inducing as it was the first time around.  😑

Back when Harper had Sepsis the first time, I may have mentioned that the cause for the infection was a UTI.  When she got her second infection, I think I failed to mention the findings of that one.  It was in fact, another UTI.  Seeing how odd this was, they did an ultrasound on Harper’s bladder and discovered she has what is called vesicoureteral reflux…huh? Yeah, same.  Non-medical people, like myself, call it urinary reflux.  Basically, its when the urine backs up the ureters and into the kidneys causing an infection.  They say that some kids grow out of it, but for those with a really high grade VUR (like Harper) they will need surgery to correct around the age of 3.  Harper didn’t want to wait until 3 years old, as she’s had 7 or 8 UTI’s in the last 9 months (I’ve lost count 😵‍💫).  She’s kind of an all or nothing type of girl, isn’t she? 🙃 Her UTI’s consist of extremely high fevers (104.6) and tons of vomiting, along with general feeling like shit and it hurts to pee.  Good times.  Harper is having surgery this Friday, May 12th.  It will be (hopefully) a 2 night stay in the hospital and then we can go home and she’ll never have another UTI again ( knock on wood).

Aside from the UTI’s, my biggest focus has been on Harper’s physical therapy.  She’s extremely motivated and her physical therapist is really happy with the progress shes made.  It’s been hard for me, because I see her everyday and the progress doesn’t seem as drastic as it does for people who may see her every few weeks.  I‘ve been told so much throughout this last year that “we just have to wait and see”.  I’m not the kind that “waits and sees” so her PT suggested we look into something called the NAPA center.  They specialize in treating kids with spinal cord injuries and their methods of therapy are innovative.  They offer, what they call,  intensives, where you go for 3 weeks and do PT/ OT every single day.  They say the child will make as much progress in 3 weeks as they would at home doing weekly PT in a year.  Yes, one years progress in 3 weeks.  Hell yeah!  They only have a few locations in the country and the waiting list is looooooong, Because every child’s case is so unique, they take all the applicants at the beginning of the year and set the schedule for that year.  If you miss sign ups, you’re put on the waiting list, in the case that some kid with the similar diagnosis will have a last minute conflict.  At this rate, we were in the queue for 2024.  I applied to be on the waiting list for 2023 and said we’d go to any location (Austin, LA, Chicago, Boston, Denver) at any time.  A few months went by and I was starting to accept the fact that we would just have to wait until 2024 , but then we got a call last week!  They had a last minute opening for an intensive in Denver starting May 22nd!  We’re still figuring out logistics but we know that we owe it to Harper to take this opportunity.  I’m so nervous and excited at the same time!

Reflecting back on this last year, I often laugh at my naivety on what I considered support during hard times.  When the idea was brought to me about starting a CaringBridge page, I was hesitant.  I’m not really one to post a lot on social media, so the idea of posting all the swings of Harper’s journey felt very… EXPOSED.   Coincidentally, I ended up using this as a form of therapy and basically spewed my feelings to anyone who wanted to read it.  I never expected this to turn into such an expansive web of support.  Hearing about Mike’s customers in countries around the world that were rooting for Harper, or  Lau’s family in Argentina cheering us on, or even just friends of friends who sent their well wishes, it was often something that helped soften the edges of the pain we were going through.  So I want to say THANK YOU to everyone.  

As for me, I’m going to continue my little form of therapy and post updates of Harpers progress on Instagram (HarperIsABadass).  I think it will be motivational to reflect back on her progress and hopefully connect with some other parents who are dealing with the same thing.  Not to mention, I think it will be a great way for Harper to understand exactly what she’s achieved in such a short amount of time as she grows up.

Cheers!