The last two days have been full of driving.
Stops to stretch our legs.
Naps in the car.
Playing Hangman and funny trivia quizzes to pass the time and keep each other awake.
And almost making the entire trip from western Illinois to northeastern Ohio without getting pulled over, until last night at 12:30 in Macomb for a silly license plate light. Ah, the luck, huh??
We knew this last week would be a big week for us. It would determine our schedule for the next several months, depending on whether I was randomized to the chemo group or the vaccine group of the VIGIL vaccine study.
If I fell into the chemo group, I would get a 2-hour infusion on day #1 and day #8 every 21 days. (That’s 21 days from day #1, so it’s like having only one week off in between treatments. In Cleveland, no less.)
If I was in the vaccine group, I would visit Cleveland once a month to receive an injection. I would be observed for 30 minutes and then be released to go home.
After they removed my lung, the tumors were 90% viable (living) so they were able to successfully create 12 vials of vaccine. If I were randomized to the vaccine group, I had the ability to receive the maximum amount of vaccine possible!
(WARNING: GRAPHIC IMAGE: Click here to view a photo of my lung and tumors.)
On Tuesday, however, I was talking to my doctor in Cleveland and he let me know that I had been randomized to the chemo group.
This was upsetting to me, as I was really hoping for the vaccine group; to be able to receive that type of cutting edge treatment would have been amazing! But as I expressed my disappointment, I was also reminded that this chemo regimen has proven effective in treating Ewings – plus chemo has worked well for me in the past – so there was no reason to get too upset about it.
We left for Cleveland on Thursday, arrived late Thursday night, received chemo on Friday and were back in the car headed home by 3:30 PM on Friday.
As I stated earlier, chemo will be done on day #1 and day #8 every 21 days. This means a LOT of trips to Cleveland.
But my doctor is the top guy for a reason – and he mentioned to us that there is a new sarcoma doctor at WashU. WashU is either set up to conduct this particular study or headed in that direction, and my doctor is attempting to have me treated at WashU in St. Louis to make the travel a bit easier on us. If this can be done, that would be great for us!
Life has a funny way of showing things to us.
I thought that being in the chemo group would be a failure – that it wouldn’t be fair.
And maybe it isn’t fair. But maybe it’s the group that I’m supposed to be in.
Maybe the WashU connection will elicit some greater connections for us that wouldn’t have otherwise been available.
Maybe the vaccine wouldn’t have done the job like it was supposed to.
I don’t know how all of these ‘maybes’ will turn out. I certainly have my hopes for how things will turn out, but as we all clearly learn in life, we’re not the ones who get the last say. I do know for certain that I have the best of the best working with me, developing a plan to work specifically for me, and for that I am grateful.
Whatever comes our way, we have to look for the good in it.
We have to learn to celebrate the moment that we’re in and not take it for granted.
Yesterday during infusion, I found it quite interesting how I was watching the celebratory parade for Chicago on TV during chemo – and back in June, I had also been getting chemo while watching the celebratory parade for the Cavs.
Celebrating every moment.
Cavaliers – June 2016
Cubs – October 2016
Thank you for all of your continued prayers and well wishes. I’m still feeling good and that’s a blessing in itself!
Glad you’re feeling good and staying positive. Love you bunches!
U r one girl with hope, faith, love to share with us, we love u so much, prayers r with u an family #♡♡♡
I’m looking forward to spending time with Miss Abby tonight. Your positive attitude is inspiring !
God has a plan for you! We are all still praying for you here in the transplant office!
Praying, Sarah! Bummer on the ticket
Sarah!! 🙂 🙂 You know, I was thinking a lot about this too (between the chemo group and the vaccine group), and talking with jamie as I was praying so hard for you to get into the vaccine group- and you are so right on. If something worked and worked well before, it is not the short end of the stick. Perhaps if you had trouble getting chemo regime before to work that would maybe be the case. And not only that, what if the vaccine fails, or needs some tweaking for it to work, you get a proved treatment that has worked well for your type.
You have been given so many challenges, in life- but you are oh so strong and you have that spark inside that keeps lighting up. We are praying so much for you here.