Journal
Holiday Update - Turning the Corner
We often talk about how appreciative we are of all the support we receive. But that is often at the end of our posts, when frankly it should be the lede (yes, that is the correct spelling in this instance). Whether it is the full “suite of care” we receive at Yale, or the visits from family, friends, and neighbors, or the genuine offers to lend a hand, or the food deliveries that are providing a layer of protection against the coming winter, or just the occasional check-ins we receive from everyone - including the amazing nurses and hospital staff at Yale and current and past colleagues, this journey has been made so much more tolerable by the support we feel and share with Charlie.
Post Surgery Pathology Reports
Despite multiple return trips and stays at the hospital due to post surgery infections/fevers we continue to have encouraging news from an ultimate prognosis perspective. The pathology results have come back on the resection (tumor removal) and they are very encouraging. There are three classifications of resection - R0, R1, R2. R0 means that all the discernible cancer was removed - including tissue analyzed microscopically. R1 means that all of the visible cancer was removed but there are some microscopic bits left on the tissue still remaining in body.
Wait, what? We Are Home!!
Yesterday we got another chest x-ray to determine whether we could pull the chest tube and instead we got some discouraging news. His upper lobe had gotten much smaller since just after the surgery. Lots of big words were used to describe the possibilities - the only word I heard was “collapsed.” To the surgeons it didn’t seem like it was leaking, and it didn’t seem like there was pressure (fluid) smooshing it, so the thought was that the airways leading to it were clogged/congested.
Ladybugs and Ice Cream
What a day. Pain team came in first thing in the morning, asked how he did overnight (fairly well) and said ok, time to remove the epidural. Wait, this was what we were lobbying for but now that we were going from 60 to 0, we were having some second thoughts. How would we manage his pain? What if this were too fast? But pain team was resolute and the idea of getting the drugs out of his system (and another tube out of his body) was too compelling so 5 minutes later he was freed.
Post Op Update
Just as we weren’t quite prepared for how long, extensive and ultimately apparently successful surgery would be, we didn’t have much of a clue as to what recovery would be like. It has been a difficult road. The good news is that we have reason to be optimistic. Surgery on Wednesday was long and exhausting, but the surgeons were very happy with the results, feeling like they got all hint of tumor.
Successful Surgery!
(Update from Jon’s sister Jen who has been with them at the hospital all day. Jon and Ami will update later.) Surgeons are “very happy” after Crash’s 10.5 hour surgery today. Chemotherapy had been very effective at shrinking the tumor. Upper lung looked like “nothing had ever touched it.” Completely free. Looked totally normal. There is a bovine patch on the pericardium, which will fuse with his own tissue. Goretex patch where they removed part of the diaphragm.
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.
Month Two
This week marked the second month of PPB cancer treatment. Tubies are gone, port instead. So swimming is back on! Inpatient weekends getting less traumatic, more routine. Good appetite Two week delay because of cough Preliminary scan shows 60% reduction in volume of tumor though still sticking to the pericardium and other troubling areas We will have additional CT scan and MRI after next inpatient chemo
Our First Month
Today is the one month anniversary of receiving our PPB diagnosis. It has been quite a month. We’ve learned a ton about the disease we are fighting and while it has been a grind emotionally and physically we are increasingly optimistic about our chances. We’ve gotten through many milestones and as I like to say, we haven’t received any bad news since the diagnosis. He seems to be handling the chemo regime fairly well (other than being a little fussy and a bit clingy to mom and dad), he has good energy levels, and very little nausea.
Crash's website is online!
Our 26 month old son, Charlie “Crash” Pageler, was diagnosed with Pleuropulmonary Blastoma (PPB) cancer on June 5, 2019 at Yale New Haven Children’s Hospital in Connecticut. Please see our About page to see what has brought us to this point.