Hello!

I hope you all had a very Merry Christmas. We sure did. This was the first Christmas since 2021 that Addy wasn't on chemo. We felt so blessed.

We headed to Mayo today for the plan for her left ankle surgery which was supposed to happen on January 2nd. It was canceled. Just to recap, Addy suffered severe Avascular Necrosis (AVN) in both ankles due to so many chemo treatments--at times, she had six chemos in one day. When she first started treatment, she signed off to take a drug called Permidrinate which is supposed to prevent AVN. The downside is that it affects fertility. As always, Addy is an anomaly. Most patients, without that drug, can end up with a double hip replacement a few years after finishing chemo treatment. However, the drug prevents that. In Addy's case, it didn't, and instead of having AVN in her hips, she ended up having it in both ankles. We knew the right ankle had fully collapsed when we went in shortly after she finished treatment and was complaining of pain. When they did a CT scan of the left ankle, it hadn't. So, we were planning on surgery in January to preserve the left ankle. When we did a CT scan to confirm the same results, it came back that the left ankle has now also collapsed.

She was able to get a cortisone shot in her right ankle to help with pain on December 11th. As far as her left ankle, they would like to try that route, too. She will eventually need surgery on both, and the surgery will be the same. They will be ankle fusions. There is nothing left between the femur and the talus if I have those named correctly. I have her right ankle picture uploaded. You will see that she has AVN in her femur (black spot), and then the bone below (talus) is black right below that and also in the front. The left ankle shows the same except no AVN in the femur and not as much black in the front. The black is dead tissue, I believe.

Each surgery is the same, but there is a lot of recovery. They are called ankle fusions since they fuse the bone because everything else has died. So, they insert screws and then she is in a cast for 10 weeks which we have recast twice during those 10 weeks. She then is in a boot for at least four weeks. Dr. Rissman said it takes about 3-4 months to be able to wear shoes. Full recovery is anywhere from 6-12 months. The blessing is that she won't have pain. The negative is that because the ankle is fully fused, it can cause issues in other joints and with movement that may have to be addressed later.

I know she is in pain as she basically has bone rubbing on bone in both ankles when she walks. We are hoping that the cortisone shots will help, and we are lucky that we have Dr. Groebner in New Ulm who is able to inject these via ultrasound. He does an amazing job. Our plan is to try to postpone surgery until May for one of the ankles. The other caveat is that she can't have surgery until six months after a shot. Also, both ankle surgeries need to be 6-12 months apart. 

Overall, we know we are still blessed, and this is just another bridge that a cancer patient crosses. I remember just wanting my daughter to get into remission. While we are so blessed that we are there, we realize that we now deal with the after effects of chemo. I HATE cancer.

Please lift up the Kokesch family, Brad Haynes, Claire, and all those who are missing loved ones this holiday season.

Wishing you a Happy 2024!

Love,
Tricia & Jason