The past three days have been filled with what feels like hundreds of phone calls, with a dozen different people, countless times each day. But our persistence has paid off because we have insurance approval to move forward with Hayden's treatment. PRAISE JESUS.
Now we wait to be assigned an infusion time and date at Riley. Our hope and prayer is that they can make it happen THIS Friday. There's lots of little details that all have to align. While the infusion itself only takes an hour, they have to schedule time to prep her for the procedure and to monitor her 3 hours following. But considering what we're doing, it's pretty impressive that this is an outpatient procedure.
Just a few fun facts about the drug Hayden will be receiving. Once it's ordered, it's flown in on a private plane, escorted by courier out of Chicago. It's kept in a $64k cooler equipped with temperature control and GPS. One of the major reasons we are really praying that they will be able to administer treatment Friday is because due to the number of eyes that watch this drug go from point A to B, it can't be transferred over the weekend. We would *really* love to not go into another weekend of waiting, not to mention losing two days to the progression of the disease.
While we've only been at this parenting thing for a couple years, we have learned SO much through this journey with Hayden. No one, absolutely no one will fight for or advocate for your child the way you would. We're grateful for the team taking care of Hayden, but since this is so incredibly rare, they have only handled a handful (literally) of cases so we're all learning as we go to some degree. We had been encouraged to tread carefully with contacting the insurance company on our own as it may have an adverse effect. But we wholeheartedly believe that the only reason why this was approved in THREE short days was because God empowered us to get involved and advocate for our daughter.
We have been overwhelmed by the outpouring of love we've received from friends, family and honestly complete strangers. Texts, calls, messages, meals. The power of prayer is real and even through the stress we have felt God's peace in a pretty indescribable way. Our prayers have been so specific from the beginning, and He continues to show up in incredible ways.
Please continue to pray for our girl. Specifically that treatment will happen FRIDAY!!
Love,
Hugh, Logan, Avery & Hayden
Logan - it is very apparent that prayer and the power of positive thoughts and empowered parents works!!!! I have found through our health care journey keep pushing and asking questions and be your own best advocate!! We are all so happy for your family and cannot wait to see this girl in person along with her big brother. Take care and thanks for much for keeping us posted during this stressful times. It does take a village and you all sure have a big one!! Virtual Hugs for all!! <3
Good, good news! Praying for Friday!!
This is so wonderful! Thank the Lord! Will continue to pray! 😘