Medically, Avery is doing great. She has been on the hydroxyurea for some time now but this week her ANC got too low so we have it on pause (which none of us are to sad about!) This weeks labs also showed an increase in her liver labs. Although not totally surprising because of the antibiotics she’s on and the duration she’s been on them, this is the first time they have been elevated since surgery. As of right now, there are no other symptoms like abdominal pain or yellow coloring of her skin so we are just going to watch them. She is still getting labs drawn every 1-2 weeks but has become quite the pro at it! The Lab Corp people know her by name and smile every time she walks in the door. She has successfully come off of ALL daily pain meds including what she was on prior to her surgery. Ibuprofen once or twice a week is all that she is needing – and that’s mostly from sore muscles as she continues to push herself physically.

Avery’s goal throughout this entire journey was to be able to attend Camp Hope in San Antonio this Summer. Every bump in the road or recovery milestone we hit, her first words would always be “Can I go to Camp?” or “Does this mean I won’t be able to go to Camp?”. A few weeks ago, her goal was met and she (and Emmy and I) spent an entire week at Camp Hope in San Antonio put on by the National Pancreas Foundation and Rebecca’s Wish for kids with pancreatitis. Many campers and counselors have undergone the surgery Avery just had. Camp was an amazing experience. Avery got the meet other kids and adults who have had the TPIAT surgery. She got tips and tricks about different ways other people manage this disease. She got to play. She got to run, and yell, and scream – just like a kid should be able to do. When we got home, Avery told me “I had so much fun, I got to be a regular kid again!”

When I say this camp was life changing for our family, I mean every word of it. Nothing could have prepared me for the growth and learning even I took away from volunteering at this camp.

Camp Hope couldn’t have come at a better time. We had been able to get into a decent routine at home after returning from Cincy but I was still so scared to give up the control of managing her health. Like, scared to death, losing sleep over the fact that she was going to start school shortly and I wasn’t going to be able to be with her all day long anymore. Even though, at the start of this journey, MY goal was to get her back to school with her friends for middle school, now I wasn’t wanting it to happen anytime soon. Then we went to camp. Avery was in the middle school girls cabin. I was assigned to the high school girls cabin. She managed her sugars, meds, etc. without me. Sure, she had an adult to help her out, but guess what, it didn’t HAVE to be me. This camp showed me she can do this. She can be independent with her medical needs. She can be happy. She can jump and play. She can swim, dance, and run around like a crazy kid. She can do it all again. At one point, on the last full day of camp, I completely broke down and had to take a crying (let’s be honest…sobbing) walk. She was exactly where we hoped and dreamed she would be after this surgery. Yes, we still have some hurdles to clear and it will be a lifetime of medical needs but she’s a kid again. She can do what she wants. Eat what she wants. Laugh, Play, and Dance with new friends. She is whole again.

So here we are, on her first day of middle school, I dropped her off and in she went….just like a “regular kid”. Last Spring, when we made the decision to pull Avery from school and homeschool for the remainder of the year, none of us would have ever imagined how good she would look today, as she walked into 6th grade. Today, we achieved Jarret and I’s goal… getting her back to school, happy and pain-free. And maybe she doesn’t need me with her every second of the day – but she did already forget her lunch and called me to bring it to her… so at least she still sometimes needs me

Here are lots of pictures from our fun-filled, action-packed last few weeks of summer that we so gratefully got to experience as a family thanks to her medical team, our family, friends, and support systems from around the world.

Thank you all for the love you have shown us the past few months. I am here to tell you, we’ve made it! Our family’s top two priorities have been achieved, attending camp and starting back to school! Now it’s time to move past this chapter of our lives and onto the next one.

 

Here’s to hoping the next one is a bit less stressful.