Today was one of those days that I just wish had turned out differently. From the get go it was not great. To start off we were scheduled at the Proton Center for an 8 o'clock session. Well, eight turned to eight thirty which turned to nine which finally turned to nine ten when Jeff came out to get us. Meanwhile, the whole time we were waiting Keegan was crying. See I think his internal clock is broken or malfunctioning. the last two days he has gotten up at 5:30 and 5:15 respectively which on "home time" is 4:30 and 4:15 for no apparent reason. So while we were waiting for our turn he was crying relentlessly; snot bubbles and all. I couldn't have been any happier to see Jeff's face and be taken back. My son was tired and hungry and couldn't understand why we were walking around the waiting room aimlessly.
After he was out and in recovery they couldn't find Dr. B for our weekly Doctor checkup. I was getting EXTREMELY Frustrated because I wanted to get done at clinic so we could get on the road to Indy so we could get back at a decent time. Ugh but anyway, Dr. B finally came in, he checked Keegs over from head to toe, literally and told us he would basically see us on the flip side, he is headed to the ATL next week for a conference and won't be in town for his last session. He only has 4 more to go-WAHOOOOOO!
I knew that the rest of the day would be long, if this was how the day was gonna start I could only imagine. On the way to Indy from Btown I stopped at Starbucks and got myself a Venti Pumpkin Spice Latte-it completed me and I felt soooo much better! We got to Riley at a decent time and no sooner than I poured Keegans Nutren into his bottle than Larissa called us back to the weigh station. As we were getting weighed (29.5 lbs), BP checked as well as temperature, Crissy, Robin and Sally came in cause they heard us and wanted to say hi. It was a big reunion in a small room!
Sally brought us down to wonderful room #9, I have received more bad news in this particular room than any other rooms in the clinic.....plus its very cold so needless to say=not my favorite room. She drew his blood, his ANC is well over 2200 which is fabulous and she sent Dr. Shih in. This is where I think I was thinking worse thoughts that what was coming out of the doctors mouth BUT in my defense I am trying to ween myself off some of my drugs (antidepressant & Anti anxiety mostly). So if it seems a little skewed you know why.
He came in looked at Keegan and we immediately began talking about "the future". In the cancer patients world the "future" consists from scan time to scan time. You can think outside that box, its weird you find yourself living from scan to scan praying and hoping with all your might you can make it to this date/occasion without anything major and so on.
Dr. Shih jumped right to that dreaded date, October 13th (its a Thursday for those of you concerned-I already checked). So MRI on October 13th, they can begin to tell how effective the radiation was and so on. Scanxiety has already set in. We then talked about the Metronomic Chemotherapy that Keegan will be on. It is a combination of 5 chemo drugs, given at home orally. Dr. Shih said some kids have seen great results with this certain protocol (Kieran Protocol) but since Keegan is in a "bracket"-if you will-all by himself we really don't know what we are doing. He is maxed out for his lifetime on high dose IV chemotherapy and radiation (you can let your heart sink a little...I did). So unless they come up with a new drug in case he relapses yet again we are SOL (for lack of a better term). We just hope and pray for no relapse.
Dr. Shih said at this point he gives him a 50/50. I am going to be positive and pray we are the 50 that survive. We have to, God would not have put this child through all this if it wasn't to life a long, healthy, productive life....right? That is what I am telling myself.
So D day is marked, from here we will hopefully move forward with metronomic chemo, inpatient rehab and getting this boy back into some sort of schedule....did I mention he will be 2 in like 2 weeks....where did the time go? Holy Cow!