I don’t know if I love the movie Hope Floats because of Harry Connick Jr. or if I love Harry Connick Jr. because of the movie. Either way, if I am flipping through the channels and it is on, I stop and watch. Every time. There is a line in the movie about giving hope a chance to float up.
We spent today at Johns Hopkins. Dave was due to start round 3 of the clinical trial. He had labs and a CT scan done before meeting with one of the doctors. She did not have good news for us. The scan showed growth of previously measured tumors, growth of new tumors, tumors in lymph nodes that we didn’t remember hearing about before. The words “innumerable tumors” were used in reference to his lungs. All around a sucker punch to the gut. Completely unexpected. On the drive home we both commented how we expected to hear works like “stable” and “some shrinkage”. What this means is that Dave did not start round 3 of treatment today. Tomorrow they will look over all the measurements, but in all likelihood Dave will no longer be eligible for the trial because it is not working for him. So, we will start looking at other options – another trial, something connected to the genomic testing Dave had done, or perhaps a conventional line of treatment. We will let hope float up to take the place of utter disappointment.
After the letdown of Samantha’s appointment on Friday, with a few clicks of the mouse I found a potentially encouraging opportunity. Right down the road from the cancer center is the Kennedy Krieger Institute which houses the Osteogenesis Imperfecta Clinic. I spent twenty minutes on the phone with an intake specialist today and have already received appointment paperwork for Samantha to complete before her appointment. I am so optimistic that they will have therapies or suggestions that are going to make her current situation more bearable and also help her in the future. They have a multidisciplinary approach that involves an orthopedic surgeon, an endocrinologist, a radiologist and a physical therapist. I am excited to have an expert team take a look at my girl.
Tomorrow we will talk to the doctors at Hopkins as well as Dave’s oncologist here. Together I know that we will come up with a plan that will get us back on the right track.
I met my boss, Ann, when I was a sixteen year old working at Friendly’s. She was attending George Mason and was one of the assistant managers. She’s been my boss for a LOOONG time. Our paths crossed again my first year out of college. I took a second grade teaching position at Dranesville Elementary, (Dave was also a first year teacher there that year but that is a story for another day) and Ann was teaching fourth or fifth grade at the time. Fast forward a decade or more and I hear through the grapevine that Ann is now the principal at Herndon. I shoot her a quick email of congrats and that started the ball rolling to me rejoining FCPS after a 16 year hiatus. I’ve already waxed poetic about how much I love my job so I won’t bore you with all of that again – but I really do love my job! Needless to say, I am very grateful to Ann for encouraging me to come back to teaching and creating an ideal situation for me.
Dave and I decided that the week of New Year’s we wanted to take a three day trip somewhere with the kids. Our plan was to get the green light from his doctor that Monday and then head to NYC Thursday-Saturday. Last Monday as we were sitting in the infusion suite at Hopkins looking at theater tickets online, we overheard from another “pod” the weatherman on the TV saying that it was going to be 16 degrees, windy and snowy in New York. It didn’t take much discussion to decide that we would go somewhere else. We spent the rest of our time discussing options, but didn’t really come up with anything so we figured we would discuss it with the kids when we got home. Later that afternoon, I posted on Facebook asking friends for suggestions of destinations. Many of them were for either an indoor water park or tubing. Parker and Grant would LOVE either of those options but with Sammi’s OI, she wouldn’t have much that she could do either place. So, in the end we thought we would head to Williamsburg or spend a night or two at the Hyatt Chesapeake. The problem with Williamsburg is that we have been there a lot so it hardly felt novel. And the issue with the Hyatt was that we weren’t sure there was three days worth of stuff to do in the cold weather.
That evening, I got a message from Ann offering up her house in Colonial Beach. She mentioned there was an indoor pool. I thought “Oh that’s nice. The community has an indoor pool.” A few email exchanges later, I realized she meant her house had an indoor pool. With a screen and projector for watching movies. We happily and eagerly took her up on her generous offer. Colonial Beach is less than two hours from our house. We were able to explore the town on the golf cart. We read and watched movies and swam and listened to music. We napped and snacked and played games. With Dave feeling run down after his chemo infusion it was the perfect getaway spot. Grant’s friend, Sean, had been with us for the week so we just brought him along with us. Parker also brought her friend, Paige. There was a little excitement when a bird hopped into the house through the doggie door, but luckily he quickly flew his way to freedom through the back door.
So, once again, I am reminded how lucky I am to have a boss who is a friend or is it a friend who is my boss? Either way, I am grateful.