"Life is tough, but I am tougher"
This is a quote on a necklace given to me by one of my Relay for Life friends, a charm of a pair of boxing gloves attached.
Right now, it's really easy to focus on that first phrase, the fact that life is tough, unfair, difficult.

This journey continues to be a roller coaster, flying upwards on good days, spinning and loop-de-loops of uncertainty, and, of course, dips down of bad news or painful side effects.

On a positive note, since being in the hospital in my Mom's last post, I've since had a long transition to being home more permanently as long as I don't have serious enough complications! For a while I was sleeping in my own bed at night but needing to be in the high dose unit (like a day hospital) 8-5 or later every day; painful sores in my mouth, throat, and down my GI tract made it difficult to stay hydrated and take my medications, and I was spiking lots of fevers. I was still attached to IV fluids at home and my parents and I had an IV antibiotic regimen to do every night. After a while the sores and fevers decreased, and I was freed from the IV fluids and allowed to have days off of being in clinic! Now I have to come every other day to have my counts checked since I often need platelet or blood transfusions.

For some good news, after I got through all of that craziness, I had some restrictions lifted for being in public and eating take out or fast food! Walking through Target, grabbing Starbucks, or driving through McDonalds are things I have definitely taken for granted in the past, so it's so great to be able to have those little freedoms again. Obviously I still have to be VERY careful about germs and take things slowly instead of doing everything at once, but it's so exciting to feel a little bit normal again. My cousin Eva went with me for my first trip back to Starbucks and Target; we had a blast! I'd also been CRAVING Jimmy John's the entire time I was under restrictions, so we indulged in that, too. Since my legs are not super strong yet, I had to use one of those "old lady" shopping scooters at Target, which caused lots of laughs and thankfully no crashes! :) Here are some pictures from our fun day:

As fun as that day was, physically things have been tough since then. As I've talked about before, part of my treatment is dealing with the symptoms of graft vs. host disease (GVHD). I've had lots of symptoms of GVHD, including skin and GI tract problems and some heart and lung issues. I also contracted a virus that caused me to be hospitalized for over a week and remain mostly immobilized in bed.  This caused me to now have to walk with a walker; I currently have much more limited mobility than I did in the pictures above.  However, I am working hard with a physical therapist who is helping me achieve little victories, like walking to the bathroom by myself.
So, although life is tough, I have my boxing gloves on and I am not giving up.  Sometimes people have reminded me that God never gives us more than we can handle.  But I learned recently that this sentiment is not anywhere in Scripture.  Instead, an even better promise is throughout the old and new testaments: God will never leave us alone, and He walks right beside us through whatever comes our way.
Love,
Sarah

I'm not sure how to begin this blog post, so I will simply start by letting you know that this is Suzanne, Sarah's Mom, guest-blogging for our intrepid Sarah Grace.  She has not felt up to writing in a long time, so together we decided that I would give everyone an update on what's been happening.  Sarah cares so deeply for all of you, and cherishes your friendship and support; so here is my feeble attempt to capture Sarah's own beautiful words within my own.

As you know, Sarah endured three rounds of aggressive chemo to prepare for her DLI, or donor lymphocyte infusion.  This DLI procedure infused the last of her sister Mary's saved and frozen cells into Sarah.  This time, however, the procedure was carried out without giving Sarah the anti-rejection meds that she received at her last transplant.  The hope is that by triggering more graft vs. host, a graft vs. leukemia effect will take place and destroy any remaining leukemia blasts.  The downside, of course, is that Sarah will be sicker this time.

A day or so before the DLI, Sarah had yet another procedure: the placement of a PICC line. This is a type of catheter that runs through the arm into the area near the heart.  After two years of being stuck with needles, the last thing Sarah wanted was to have this procedure done.  However, her doctor felt that a PICC line was necessary to complete the DLI.  So after wiping our tears and offering some prayers, Sarah put on a brave face and said she was ready.  As it turned out, the procedure was less painful than she expected and turned into a pretty cool clinical experience for our nursing student!  The practitioner talked Sarah through every step and the two of them discussed all of the anatomical and pathophysiological effects as the procedure took place.  After it was done, Sarah actually smiled and realized that, once again, she overcame a (legitimate) fear and moved past it.  The Lord was with us that day.

The day of the DLI was beautiful. It took place on the same day, at almost the same hour, that Mary was beginning a six-week course of study with the Milwaukee Ballet--a new start for both of them on life's path.  The fabulous Sr. Fran Glowinski visited us with both the Eucharist and her gentle but profound encouragement.  The Lord was so very present that day.

After a while, Sarah was allowed to go home for recovery. This was not easy, however, since she had developed terrible sores in her mouth, throat, and esophagus--a result of some of the pre-DLI chemo, most likely. Since Sarah was unable to eat or drink anything for a long time, she was hooked up to a battery-operated pump which powered an IV.  She received fluids at home this way, and then some antibiotics; she also had to spend each day back at Loyola from 8 am until at least 5 pm.  It was an exhausting regimen.  We had no recourse except to ask God for strength and perseverance.  When I look back on those weeks, I'm not sure how we got through them--except for God's presence each moment of each day.

On one particularly hard day, Sarah received a package from a dear friend from SLU; it contained a beautiful scrapbook with notes and letters of support from all the members of SLU's Relay for Life committee.  Sarah and I wept as we turned each page; we could barely take it in.  The unconditional love and support that Sarah has received from this group of loyal friends reminded us that God continues sprinkling His love into Sarah's life in unexpected ways.

On Sunday, July 13, Sarah was readmitted to Loyola due to concerns about the extent of the graft vs. host possibly manifesting in her lungs.  Today's tests on both her heart and lungs will lead to more procedures and biopsies over the next few days.  Sarah has experienced some shortness of breath and difficulty walking more than a few steps.  The doctors want to treat this aggressively before these issues can become real problems.  And so our brave girl faces a bit more uncertainty with the same faith-filled trust with which she has faced down every other bump in the road.

If you have texted Sarah, or Facebooked her, please know that even if you do not receive a reply right away, she treasures each and every expression of support.   Honestly, she feels pretty crummy right now.  But tomorrow is a new day, with new opportunities for renewed health and restored strength.  Truly, I don't understand why all of this is happening.  But I have learned that each day we have a choice: will we thank God--for excellent medical care, for loyal friends, for blessings big and small--and trust Him with our very selves?

Please keep Sarah in your prayers and know how much she cares for you.  She will not back down in this battle!

Love,
Suzanne 

Putting Up A Fight, Praying for a Victory

Hello, everyone!

Sorry it's been so long since I gave a mass update. I decided I want to try to get into a habit of blogging every week to keep everyone in the loop of what's going on. On days when I'm not feeling great, it's hard to get up the energy to commit to sitting up and using my brainpower to translate my thoughts to typing! However, I also need to remind myself that I don't have to make massive posts with tons of pictures every time I post...simple updates are good, too. So, hopefully I can work on writing a little more often, even if it's just short updates. I am so grateful to have all of you, my amazing support team, so I want to share every step of this crazy journey.

Last time I posted I believe I was just finishing my first round of chemo. After that first round, when my cell counts started coming back up, I got some not-so-great news that there were still leukemia cells in my blood, meaning that the chemo didn't put me into a remission. This wasn't a surprise, since my type of leukemia is extremely aggressive and stubborn. If anything would have been able to put me into remission, it would have been that round chemo, so it was disappointing that we didn't have the results we hoped for. This news doesn't change the treatment plan, it just means that I'm not in the most ideal place I could be. However, I am tough, I am strong, and I am a fighter, so the fact that the cancer cells are stubborn just means that I have to continue show them who's boss!

Last week I had my second round of chemo, but that type of chemo I was able to have outpatient and stay at home! Being home is SO much more pleasant than the hospital. No being woken up for vital signs 5 times during the night...no being attached to a beeping IV pole I have to push around...I get to enjoy the fresh air and sunshine...I get to see my family every day...I could go on forever about how much better it feels to be home! This round of chemo was not quite as intense as the last round, but I do have things I'm struggling with. My stomach doesn't always agree with me, my exercising makes my legs really sore and achy, and I've had headaches and other undesirable symptoms.

Although it's hard to be uncomfortable, I'm really learning once again to focus on the blessings rather than the things going wrong. Yes, I have some pain and nausea; but the pain is manageable and the side effects are nowhere near what I've had to go through before. Yes, I have to go to the hospital every other day for bloodwork and checkups, which can take a while; but I get to sleep in my own bed and be at home for the rest of the day. Yes, my muscles are weak and it's hard to exercise every day; but I get to take walks outside, at gorgeous parks, in the beautiful weather instead of the hospital hallway. Every day I wake up, I have a choice: I can let all of the things that are unfair or painful or going wrong drag me down, or I can decide to be thankful for all of the blessings I've been given. I don't always choose to look at the blessings, but I have to say that when I do, it really makes all the difference. In the midst of the battle I'm fighting, God has given me so many amazing gifts...and I choose to be thankful.

Finally, an update on what's to come! On Wednesday, I'll have more chemo to prepare me for my "mini transplant." That next Monday, the 23rd, is when the transplant is planned for as long as everything goes as expected! I'll get a big dose of my sister's cells again, and we're praying that those cells will put me into a long-term remission. I'm ready to kick this cancer for good, and I'm willing to put up whatever fight is necessary to once again be victorious.

Thank you, as always, for the prayer and encouragement! Lots and lots of love,

Sarah

Hi everyone! Just wanted to give an update.

Since the last time I posted, I was able to go home! After some of the side effects of the chemo had subsided, the doctor allowed me to wait for my counts to go back up at home instead of having to be at the hospital.

Being home was AWESOME! Since the hospital I'm at is an hour away from home (or more with traffic!), when I'm in the hospital I don't get to see my siblings very often. Being at home, I'm able to see everyone in my family every day! There are also so many things that make home more comfortable than the hospital: I don't have to be interrupted for blood pressure and temperature all the time, I'm allowed to go outside for fresh air, I'm not hooked up to a big IV pole...there's just no place like home! My cousin Eva and I went for a walk outside while I was home, so here's a picture!

One of the best parts about walking outside is that I don't need to wear a mask like I do when I walk the hospital hallway! Woo!

Unfortunately, just a few days after going home, I spiked a fever one night and had to rush right to the hospital again. Fevers are really common after the kind of chemo I've had since my white cells are pretty much all wiped out, so my immune system can't fight anything. They did tests and cultures for almost every disease I could have, and I received good news: everything came up negative, meaning the fever wasn't from a specific disease (they just all that a neutropenic fever). The doctor explained that sometimes the natural bacteria in my body or even on my skin could cause a fever when my immunity is so low. They gave me strong antibiotics here in the hospital, and they seem to have worked! Yesterday and today I've had NO fevers and I've been feeling SO much better overall. I'm back to my walking schedule (yesterday I did 3 walks, and one of them was 40 minutes long!). I'm eating well, even though eating is a chore. The chemo has completely taken away any and all appetite for any food. Regardless, to keep my body strong, I know I have to keep eating, so just like taking my medications and walking, eating is something I just have to do in order to continue my fight.

During my time at home, I did end up losing my hair. Once it started falling out all over the place, I decided to buzz it off since it was just too irritating to have hair all over my clothes and pillow! It's almost all fallen out now, but I'm really okay with it. As much as I'm bummed that I have to start the hair-growing process all over again and wait for long hair again, I'm not uncomfortable being bald. Once again I have the mantra, "bald is beautiful"!! Whether I have hair or not, I'm still the same Sarah. I have the same smile, the same personality, the same amazingly-created body. Cancer can take away my hair, but it can't take away my beauty, and it definitely can't take away who I am!

Things may not be easy right now, but there are SO many blessings to be thankful about! My fevers are gone, and I'll be going back home soon. I don't have any big complications from treatment. I'm not in pain. I have enough energy to walk and keep my strength up. I have some great nurses and techs that I've made friends with. I have great supportive family and friends to text, call, and keep in touch with, and I just had one of my best friends from school over to visit! Overall, there are tons of positives to focus on right now, which feels really good.

One more positive to mention: I have a GORGEOUS view of the Chicago skyline! If you know me, you know I have a huge thing for skylines. Here's a couple of pictures from my adventures in walking:

The skyline!!

The walking hallway with HUGE windows on a sunny day!

I don't have much more to report! Thank you, as always, for all the love and support I've gotten from you all! Love you all tons!

Love,
Sarah

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