I like to get the big news out first so you have the news and can stop reading if you don’t need to catch up on everything. But in case you want to know more, I have the latest. Clarke had a big day today at St. Louis Children’s Hospital. She is 2 years post stem cell transplant at this point so a bunch of follow up tests were in order. It feels unbelievable that 2 years have gone by. 

She started her day with an MRI to take a close look at her liver. If you recall, her numerous transfusions during chemotherapy days caused her to have an alarming iron overload in her body. Her Ferretin level was over 4,000 when normal levels are between 1-100. This has taken years to come down ever so slowly thanks to some help from an uncommon medication called Jadenu, typically used in sickle cell patients with limited data, she has taken daily since mid 2020. For the very first time, her number is 80! And her liver, which the iron was stored in, was looking healthy today so that journey is now behind us!! 

Next appointment was hectic as Clarke had labs drawn by the nurse while our PT specialists looked at her ankle stretch and refitted her for a new pair of leg braces. We are still working on her neuropathy which was an after-effect of her chemo Vincristine. She chooses to wear these as she sleeps and they had proven to be quite uncomfortable, so in January we will pick up her new set and adjustments were made for her current set to get her through until January. Labs all came back looking great! And she braved the “poke” so very well. She said it did not hurt! Yes!

Then we hurried down to get the Chest XRay which was super speedy compared to the 40 minute MRI. And of course we had great results here and are celebrating the good news with you all!

Then up to Audiology to check her hearing post transplant. Everything was normal there. Woohoo!

Next an Echocardiogram which was another lengthy test to check her heart function and she did great there as well. All functioning healthy and normal. 

Finally we went to the pulmonary lab to check the strength and function of her lungs which she did by blowing in a measuring tube as hard and long as she could. We haven’t heard any results from this yet but she seemed to do great so I’m hopeful they will see she is strong there too. 

The biggest joy of the day was catching up with our heroes. We met up with Allie from Child Life, who we just had such an amazing experience with during our hospitalization for the transplant. She is THE SWEETEST. She has gotten Clarke through some really tough times. She was so happy to see Clarke’s curls. Thanks to Clarke’s grandmother, Charlie and her generous seamstress friends, we were able to deliver 150 chemo hats to the kiddos in the hospital. The hats had a special tag in them that reads Clarke’s Creature Comforts. We are so proud of this gift as it was such a special gift for Clarke to have these during her entire treatment. Soft, light, comfortable hats with cute prints to keep heads warm and cozy. 

And then we caught up with our #1 hero, Dr. Armstrong, who orchestrated this whole day and brought us such good news at the end. We looked at a poster with her picture on it before we saw her and Charlie recognized her. 

I said, ‘do you know who that is?’

 ‘Yeah, Dr. Armstrong. Sissy’s doctor.’

I said, ‘did you know she is also the closest thing to a real superhero you have ever met in your life?’ And his eyes lit up. ‘She saved Sissy’s life you know. That’s what super heroes are good at.’ 

Then we saw her in person later and he gave her the biggest, sweetest hug. We all did. 

And that’s the good news for today! As always, thank you for your continued and amazing support. 

Alli