A few Words

Today was a long rough day.  We first woke at 5AM to Ryan screaming from pain while urinating. Then we headed to my mom’s to drop off Rowan and then off to the hospital. The clinic wanted a urine sample to test for UTI and to see if there was any blood to indicate a kidney stone. He had no problem peeing in the cup – pain free, it figures. Then we headed to radiology where after 2hrs of waiting he was sedated then scanned – all that for 15 minutes. He took his time waking up too but by noon we were headed to see the sites in the hospital and begin our 3hr wait until his next appt.

Ryan went into melt down mode after about a half hour and I was dehydrated, starving, and so ready to go. We attempted to leave, actually making it to the car, seat belts on. But we were both super grumpy and just needed to stop for a moment. I figured we should just stay, eat, and wait it out instead of going to mom’s, risking him falling asleep in the car, possibly eating, possibly napping, then heading back to do all over again in a few hours when we were both so cranky. I stepped out of the car to breathe as Ryan flailed inside. Tantrum done, then we hugged and made-up and headed back inside to eat.

Lunch was quite pleasant. Ryan had pepperoni pizza and I bought a pineapple fruit cup to add his favorite topping to the slice. He also devoured a mandarin orange jello cup and a grape slushie. After refueling our bodies, we decided to go for a ride to the stars and bottom of the sea courtesy of the glass elevators in the lobby. It was almost exactly a year ago that he did this for the first time. One of his favorite nurses, Ryan, showed him this for the first time. He took him for a wheel chair ride out of his room and into the hospital. He had a trach then and was so very ill. If you look back through pictures you can see for yourself. He has come so far.

After zooming to the sea one last time, we rode the escalator and then stopped to watch the ever-fascinating ball machine. He dragged me into the gift shop where we spent plenty of time playing with every toy. I was coerced into buying him a fire truck which he is currently sleeping with.  We then went upstairs to the clinic to wait some more until our appt, only 40 minutes too soon. And it figures she would be running behind too. Wait some more. Finally the doc came in and gave us a word.

“Stable”, she said. “The scans this morning were stable.” I heard her but I also saw her. Her body language expressed something more. She seemed uncomfortable, not as enthusiastic as her words begged to be. She then said she was “uncomfortable with the terminology the radiologist used” in the report. She lost me there. What does THAT mean? She explained that there are two small areas on his lung that in past scans were referred to and considered to be post-operative changes. But on this latest report the radiologist - who she gushed is very good and very trustworthy - called these two tiny air filled pockets something else. Another word: “cysts”.

It’s just a word. Just one tiny word. Could mean nothing. Could mean… something. To a parent of a kid with PPB, and to a PPB doctor, that word has a lot of weight. PPB starts out as a tiny, seemingly harmless, cyst on a child’s lung. The cyst then grows and becomes filled with liquid and then advances to become a solid tumor. I could now understand why she looked so concerned.

She tried to reassure me that there have been “no changes” in these, suggesting post-operative sites, and that the scans have remained stable and the overall verdict is that he is disease-free. But she said she is going to confer with the radiologist and his surgeon to make sure and to better understand why this term was now used. What does it mean?

Cyst or not, they are going to keep an eye on it to determine if there is any growth or change, which may indicate return of the cancer. When and if that happens, they will decide how to proceed at that time. But as it is right now, there is no change. He is stable. His next set of scans is in three months putting us at the end of February, right around Rowan’s second birthday. So we will just have to wait, and pray, and see.

As far as the pee-pain… his test came back fine, no blood and no infection. So they have no idea what was causing that. If it happens again, I am to call the doc right away so we can look further into it. However, the radiologist said his testicles are always bouncing around up inside of him. I guess on several scans they can be seen. This is not unusual but they should be able to drop back down. She described them as yo-yos that can bounce up and down inside and then drop into position outside of the body. They are concerned because they should’ve dropped by his age and there is an increased risk for testicular cancer if they can’t drop. After a thorough exam, the doc said she could not find his left one to pull it down into place. He will need to see a pediatric urologist who can “tack it down” as she put it. I’m obviously not a guy, but it makes me feel squeamish as my imagination stumbles over just how they may accomplish this.

I am hanging onto hope, as always. There are a few words and what they all mean that will be running through my mind over the next 3 months. “Stable” is good. “Cysts” is undecided and panic inducing. And “tacking down a yo-yo” while seemingly comical is the next medical hurdle. Right now I just want to enjoy the holidays with my family. And stand in awe and thankfulness of the abundance we DO HAVE in our lives.  

Finally by 5, I got to mom’s to pick up Ro and a lovely pork pot-roast she had cooked for us. This exhausted mommy and the sleepy kids headed home arriving just minutes before Daddy who was coming home from work. And after quickly eating, I went straight to bed. I awoke to help put the kids to bed then decided to stay up a bit and write this update to all of you who’ve been so patiently awaiting a few words.

Thank you for sticking with us this past year. My heart and my gratitude are continually overshadowed and overwhelmed by friends’, family’s, and even strangers’ warm hugs of support and generosity. My sincerest THANKS! Happy Holidays to you and your family!