Surgery Scheduled
Dear Friends and Family,
It’s been just over 3 months since Charlie (aka “Crash”) was diagnosed with Pleural Pulmonary Blastoma (PPB). We can’t begin to put into words how grateful we are to have you all in our lives. Thank you to our friends for the playtime visits, generous gifts, delicious meals, wine, cookies, thoughtful notes/cards/comments, prayers and late night calls and consultations. Thank you to our family for the continuous stream of visits, hospital overnights, facetime calls and constant showering of love and attention on this family. We have been overwhelmed by the outpouring of love and support. It’s been a humbling experience for us, and we have been less than perfect with timely “thank yous”, etc, but we want you to know that every single thing you have done for us has made a BIG impact on our lives. This experience has paralyzed us in some respects, but we know that we are not alone, and it is your collective strength that is helping us to move forward towards being cancer-free.
After weekly chemotherapy, blood draws and hospital visits over the last 3 months, it is time to share some GOOD news… While we are not yet out of the woods by any means, we are making great progress! On Tuesday, we had our 3 month Brain MRI and CT Scans. I will quote our surgeon as his choices of words were the best….. “We have seen a TREMENDOUS response to the Chemotherapy”. Upon diagnosis, Charlie’s entire right lung was filled with the tumor. His trachea and heart were actually being pushed further into the left side of his body. Today, the overall tumor and cystic components comprise only about 15-20% of his lung. It is primarily localized to bottom right lobe. Very few vital structures are impacted, and his heart and pulmonary veins are not affected. We’ve gone from a Costco sized can (LARGE!) of peanuts to a small apple. We did, however, also learn of a small cyst (pea size) on Charlie’s left lung. It has not changed in size with Chemo, so they suspect that it is not cancerous, but it will need to be removed as well.
We’ve made the decision to stay at Yale for surgery after lots of formal and informal discussions with medical professionals across the country (including some of you). We have an unbelievably, experienced pediatric care team at Yale whom we trust. They have consulted on his case with the best hospitals, surgeons and oncologists across the US. And they care, love and are vested in delivering the best possible result for “Crash” as they’ve come to know him. (Sadly for me, Jon has won the nickname game at YNH – his medical wristbands now say Charles “Crash” Pageler.)
This coming Wednesday 9-18-19, we will check-in for the big surgery. It will last about 4-6 hours. We will be in the hospital for 7-10 days for recovery, chemo restarting shortly thereafter (until end of May 2020). We are only doing the right lung this go around through a thoracotomy (horizontal incision across his right side, front to back). They will remove the bottom and likely middle lobes. The good news is that the remaining lobe will fill the space with little to no impact on his respiratory function. We are likely to have some affect on the diaphragm and phrenic nerve but all generally manageable. The left lung cyst will be removed in a separate, much less invasive surgery.
Charlie is overflowing with all the energy and spunk of a 2 1⁄2 year old the day after Halloween. His resilience amazes us. The only sign of his illness is his handsome bald head. He has had very few other symptoms from treatment. He has gained a couple of lbs and grown from 2’ 11” inches to 3’+ in the last 3 months. He remains focused on being 2 1⁄2, learning as much as he can (he’s in two 2s programs this year!), jumping in puddles/on couches/trampolines/mommy/daddy, causing general mayhem and being the best big brother to Baby Jack.
Thank you all again for being here for us every step of the way. We will let you all know when we are home from surgery and will do our best to keep you closer on this journey.
Lots of Love,
Ami, Jon, Charlie (aka Crash) and Jack
