Finally sharing the whirlwind of the past week...

This past semester, I finally made it back to my home of SLU.

No more sitting in a hospital room, memorizing commercials. No more being woken up at 4 a.m. for blood draws. No more face masks or dietary restrictions. After going through a diagnosis of high-risk AML (leukemia), treatment, and a bone marrow transplant with my sister Mary as my donor, I was finally, once again, a "regular" college student, living out a "new normal."

My picture for Relay For Life committee!

My semester was the best I've ever had at SLU. I became a committee member for Relay For Life, a huge fundraiser for the American Cancer Society, and gave a speech about fighting back against cancer in front of everyone who came to the event. I joined the Be The Match On Campus group, giving presentations to share my story and explain why registering is so crucial, and holding drives to find potential donors for cancer patients. I was an avid supporter of the Billiken Basketball team, who made it pretty far during March Madness, and I had my first 15 minutes of fame when my cheering, screaming face was shown on ESPN...in addition to being featured on the dance cam! I had a brief but awesome encounter with Rainn Wilson (who played my favorite character Dwight on the TV show The Office). I celebrated my "1st Birthday" on the 1-year anniversary of my bone marrow transplant.
Beyond all of these extraordinary opportunities I was given, I also got to just be a college student again. Late night study sessions ending in Taco Bell runs; celebrating my 21st birthday; dressing up for dances...the list goes on and on.

Here are some pictures to document the past semester!

Relay For Life:

Be The Match On Campus:

My friends who signed up for Be The Match at our drive...we got 70 new people to register!!!

Speaking about Be The Match and sharing my story with my friend and the BTMOC president, Andrew:

Celebrating my "1st Birthday"

From the "Crush" Dance I went to on Valentine's Day:

Studying out on my balcony on a georgeous day:

At the Billiken's game where I was on ESPN!

An assortment from my 21st Birthday celebrations:

As you can see, it's been one incredible semester!

Unfortunately, one week ago on Friday, May 2, I received news no one wants to hear once in their life, much less twice.

About two weeks before school ended, right in the midst of finals, I had been having strange, unexplained back pain and muscle spasms that progressively got worse and started to bother me during class and lectures. I called the oncologist I have check ups with in Saint Louis, and his nurse practitioner had some suggestions of what the pain could be. She wanted me to come in for an exam and possibly some x-rays, and every time I have an appointment with an oncologist, they always do blood work to make sure everything is still running smoothly. I got my blood drawn and waited for the nurse practitioner to take me to x-ray or prescribe me a medication; what I never expected was for her to sit down and tell me that they had once again found evidence of leukemia in my blood.

The cancer was back.

At first, I had no thoughts or words, I just sobbed and sobbed and couldn't believe what I was hearing. Finally when I could speak, all I could ask was, "How is this even possible?" I had just had a bone marrow biopsy over spring break that had been, in my doctor's words, "perfect." I tried to listen as the nurse practitioner explained that we had caught this very, very early, and that it was completely possible that the leukemia cells had only become present a week ago or less. As hard as I tried to understand, it simply didn't make sense. I had already beaten the leukemia; I had just walked the survivor lap at Relay. I wasn't supposed to have cancer anymore. Regardless, they called my Mom and my doctor immediately, and I was told to rush back home to Loyola to be treated as soon as possible. 

On my way home from the doctor's appointment going back to my apartment to pack, I called my friend Mary Monaco who was on Relay committee with me, sobbing and explaining what had just happened. She met me at my apartment when I got there, gave me a huge hug, and had already been contacting our friends so that as many people as possible could come say goodbye before I had to leave in just a few hours. While I was getting hugs, support, and being asked when visits were allowed, Mary M. directed everyone in cleaning and packing my entire apartment...I didn't lift a finger. By the time I finally had to leave, pretty much EVERYTHING was cleaned and packed up for me, and the rest of my friends carried down everything that would fit in my car. Once everything was ready, Mary refused to let me drive home alone, and she was an amazing roadtrip buddy to have. As we drove, there was a spectacular sunset...just when we commented on how beautiful it was, our friend Erin texted us, "The sunset is just for Sarah tonight." We cried, but it was a beautiful moment to share.

The next morning, I checked into the hospital, and here I am. I have already had wonderful visits from my Aunt Barb and cousin Eva, and Eva brought a princess party into my hospital room with bows, tiaras, coloring books, and snacks.

My sister Mary came to visit:

 Eva and me as princesses:

My Mickey Mouse chain counting down days until chemo, and my white board in my hospital room:

Adventures in Walking and my PCA got a little Sarah-fied:

 SMIZEING! (Smiling with our eyes, a la Tyra Banks' instruction)

So, I'm sure you're all wondering...what's the plan now? I just finished my first round of chemo, so my doctor is waiting until some of the symptoms from that subside and keeping an eye on my counts to decide exactly what the treatment plan will be from here. It wasn't the most intense chemo I've ever had, but it was stronger than other chemos I've had and definitely knocked me on my butt a little. As long as my counts are still looking good, I may be able to go and spend a little time at home now and possibly have more outpatient chemo, although that's up in the air. The main treatment after my chemo will be what's called a "DLI," or Donor Lymphocyte Infusion. Basically, they will take leftover cells they already have from when Mary donated to me and will infuse them after just a little bit of chemo rather than completely bringing my counts to zero like they did for the transplant. They then won't give me medications they did last time to prevent Graft vs. Host Disease, or my body kind of "fighting" Mary's somewhat foreign cells. They think that why I relapsed is that the Graft vs. Host was TOO suppressed last time...although they don't want your body fighting the new cells to a certain extent, some of that fighting actually kills off the leukemia. This time, they hope that a little bit of Graft vs. Host will kill off the rest of the leukemia cells for good.

I know the above may not make much sense to you, because I FOR SURE don't totally understand it physiologically...and I may even not be explaining it exactly right so don't quote me on DLI's! It's been a little bit more confusing and up in the air as far as treatment, but I trust my doctor 110%. He saved my life once and I absolutely know he will do it again. The biggest things to know are that although I will be neutropenic and immunosuppressed again, I will NOT have to endure a pre-transplant regimen with radition and cytoxin (extremely strong chemo) again, and I will NOT have to have those 100 days of isolation!!! Just those two facts bring me to tears in realizing that although this journey won't be easy, it most likely will be a little bit easier than what I've already been through.

Thank you to my amazing support system, every single one of you. As you did before, you raise me up and keep me strong with every prayer and note you send my way. I love you all so much and promise to continue to keep you informed! I want to try much harder to stay in touch this time, even though, as always, it's difficult to type/be fully aware and awake while going through treatment.

I love this quote from Louisa May Alcott that I decided to christen my blog with: "I am not afraid of storms, for I am learning to sail my ship." Although this is yet another storm in my life, I learned so much from the first "storm" I had to endure. I enjoy little things so much more, like feeling raindrops and the smell of fresh air...I finally feel I've found lifelong friends who I know will be there for me every step of this journey, as they already have...I have grown closer to my family, and made lasting relationships...the list goes on and on. I am learning that the direction I have sailed in in the past may not have always been the right direction to go; sometimes it takes a scary, thunderous, lightning-filled storm for God to point your ship in the direction he knows you'll be better off going. Yes, this is scary...yes, it's unfair...and yet I am trusting God to keep my ship solid and whole beneath me, to rise from this storm with an even better life direction than I'm experiencing now.

Love,

Sarah Grace