Update of Some Fabulous News!

Well, as much as I LOVE the peds floor, one of the downsides is the noise: I've gotten a whole hour of sleep tonight between crying babies across the hall and a seemingly always incredibly loud next door neighbor. While waiting to get something from my nurse to let me finally get some kind of rest, I figured I'd channel my frustrations into sharing the great news my doctor had for me today with all my amazing supporters! :) (Just wish me luck my neighbor lets me at least get a nap tomorrow...PLEASE!)

 Today, or technically yesterday (Sunday), my doctor told me that my white count, the number that has to get to a certain point before I get to come home, is almost to the goal number...so, after another bone marrow extraction and spinal tap to verify that my bone marrow is doing what it should, I will be going home sometime this week!!! After almost 4 months straight, minus the week I was home between rounds 1 & 2, I am beyond ready to be done with being woken up to check my vitals all the time, being stuck in the chest weekly to change my port needle, and especially listening to unnecessarily loud neighbors...for starters. I absolutely can't wait to breathe in fresh air again and have more than a single floor to roam around. Sometimes it is comforting to be in the hospital, because if anything goes wrong, you have immediate access to doctors and nurses and all the health equipment in the world. Getting a fever, for example, can happen pretty easily to kids going through chemo, and we're given antibiotics right away to kill whatever bug we pick up. If a fever happens at home, I have to be rushed back right away to get my antibiotics by IV. Regardless, breathing in the sweet, fresh air versus the dry hospital environment is an incredible feeling...no matter how scary it is sometimes to think about fevers or getting sick, there's definitely no place like home!

When my doc told me my counts, he said right after, "That is YOUR marrow that got your white count so high; yours!" After 4 grueling months of chemo, surgeries, tests, tubes...FINALLY my marrow is ready for brand new, healthy stem cells to make my body healthy again. I've been through hell and back in a lot of ways, and I'm more than ready to just be DONE with treatment!

As I move on to the final phase of treatment, I'm remembering all that God has blessed me with so far, even through the pain, and I see that He is taking incredible care of me. Yes, there's going to be pain and suffering in life, and everyone has different life battles. But, remembering the "Footprints in the Sand" story I referenced in one of my very first posts, I know that there have been many times God has picked me up and carried me through; through my parents` nonstop love and care, through those special nurses and doctors who have gone above and beyond their call for my sake, and through the letters, packages, and undying support that reminds me to keep pushing and keep fighting. I'm learning that no matter what life throws at me, God either gives me the strength to fight, or carries me through when it just feels too hard. I hope someday I'm able to share this experience with someone ready to give up...reassure him or her that when you can't bear the cards you've been dealt, you sure as heck have someone bigger and stronger willing to take it instead.

Rambling, as usual, so I'll try to get some shut-eye. Goodnight and, as always, lots of love all around! :)

 Love,

 Sarah

<3

New Year, New Perspective...New Life!

Merry Christmas, Happy Hanukkah (Since I know I have some Jewish supporters! :)), and Happy New Year!!! And a pretty great new year it's been so far: My counts are FINALLY beginning to rise, which means quite a few things:
- I have more energy in general and I'm stronger and more balanced
- My pain is almost totally gone, which means going down on my pain meds, SLOWLY so that I don't have withdrawl symptoms since I've had to be on them for so long
- Once my counts reach a certain point and I'm pretty much pain-free, I get to go home for a few weeks before coming back for transplant!
So, if things go as planned, hopefully I'll be home sometime in the coming week to rest and let my body heal as much as possible before starting my bone marrow transplant. While I'm home, however, I'll have to come back to the hospital pretty frequently to have my counts checked and to go through lots of pre-transplant testing. When I'm finally ready to be readmitted, I'll have to move up to the floor that's specifically for bone marrow transplant patients rather than being on the pediatric floor; that means I'll have a new doctor, new nurses and techs, and a totally new environment--without an art room. :( However, the floor is currently being remodeled, so I'll have a brand-new, really nice room. In addition, the floor will have an exercise station (After transplant, exercising every day is required to keep your body strong), "meditation" room where I can go to be alone and pray or just have some quiet time, and a family room for visitors. My social worker, who mainly works on the transplant floor, has assured me that my new room and floor is going to be GORGEOUS.

I think most people would expect to be excited to move to a brand-new, beautiful room and finally be in the last phase of treatment after 3 long and unimaginably difficult cycles of chemo. Instead, if I'm being totally honest, I'm nervous and even pretty scared. I'm so comfortable with this floor, my amazing nurses who have become close friends, and having access to an art room and all the movies and video games I could possibly want. I don't like big changes; after almost 4 months here, it's kind of like home.

It's almost ironic that this huge change in my life is happening at the same time lots of people are deciding to change their lives as well. New Year's resolutions are usually pretty big changes to benefit oneself, like living a healthier lifestyle with diet and exercise or spending less money and saving more. Those changes take a strong, dedicated person. I think the majority of people would admit that New Year's resolutions tend to fall off after a few weeks or months. However, there are a select few who actually stick to their goals and achieve them. I think the hardest part of making big life changes and sticking with them is being willing to be outside of your comfort zone for a while and eventually redefining your definition of what's comfortable. It's not easy, but it's what I've had to do so many times already during this journey. There are the huge changes I was forced to get used to, like having a port surgically implanted in my chest to make blood collection easier, and especially living in a hospital rather than my college campus. Then there are the smaller changes: losing my hair, eyebrows, and eyelashes; wearing pajamas and sweats 24/7 rather than putting together cute outfits. I've had to allow myself to be uncomfortable in a lot of different ways.

What I've learned from all these difficult changes is that once you have the courage to get on the other side of the lines you draw in life, you find that the other side isn't as scary as it seemed before. I'm not going to say that change is easy, but as things change, so do your priorities and your outlook on life. When I was first diagnosed, I was terrified to lose my hair and even more scared to lose my eyebrows and lashes. I didn't want to look "sick" or have people feel sorry for me. However, now that it's all gone, I've realized that I almost fit in more here in the hospital. The majority of us who stay here long-term are oncology kids getting chemo, so there are lots of us "baldies" and people don't really take too much notice. :) Even being outside of the hospital, I have learned to spend way less time worrying what people think of me. Cancer has made me realize how frivolous it is to worry about what others think, even if they do think I'm "sick" or feel sorry for me. By being forced out of my comfort zone when it comes to physical appearance, I see from the other side how useless it was to spend time worrying what a stranger (or anyone really) thinks of me.

You'd think with that life-changing realization about change that I'd be fine with moving up to the transplant floor. But, since you can't really control the emotions that come and go, I guess it's one of those lessons you have to be taught over and over again. I can't help feeling nervous about moving to a brand-new environment and having brand-new experiences; it's out of my control. I do have control over how I decide to act according to how I feel. Rather than carrying the burden of my bundle of nerves all alone, I do my best to trust God, my doctors and other caretakers here at Loyola Hospital, and my parents that this is the right medical choice...even if it's a little scary. I have SO much care and support from more people than I can imagine; I know that there are many, MANY people I don't even know who have followed my story and are supporting and praying for me even though they've never met me. In addition, having the support and love of all of my family and friends is, once again, getting me through a difficult time. I know I sound like a broken record with how much I talk about all of the support I receive, but when I know that I have prayers and love from such a multitude of people it makes me feel stronger and less afraid. There's no question on whether or not I can make it through transplant; I know I will!! I guess it just comes down to trying as hard as I can to keep a positive, hopeful attitude as often as I can. Obviously I can't be positive all the time, but lots of studies have shown that your mental beliefs can have big effects on your body. So, the more I either think positively or believe the awesome words of all my supporters, the better I believe I'll do physically. It's not going to be an easy challenge to have to pursue, but, as my Mom reminded me a couple of days ago after reading a note from a family friend, once I'm done with my transplant I'll literally have a new life and a new birthday, a wonderful gift from my little sister. Yeah, be jealous...I get TWO birthdays! ;) I want to add another big THANK YOU to Mary for giving me the most beautiful gift she ever could. I love you little sister and I'm thinking about you all the time!!! <3

I hope all of this is coherent and legible...I'm still on medication that effects me mentally, which includes reading and writing. :P Regardless, I wanted to make sure to give everyone an update and not leave my family, friends, or supporters without knowing how much better I've been feeling! :) My counts are still extremely low compared to someone who's healthy, and I'm still sleeping more than usual, so as much as I would love to have some visitors, I would still appreciate a text/call to my parents or me before visiting! How I'm feeling, like if I have nausea or need more sleep, is still day-to-day and my immune system is still very, very weak. I've still been recieving beautiful notes and cards of encouragement, and I read and save every single one!!! I have the BEST support system a girl could ever ask for. :)

Lots and lots of love and thanks, as always!

Love,
Sarah
<3

It's Beginning to Look a Lot Like Christmas...in my Hospital Room!

A VERY overdue hello to all my family, friends, and supporters!! Once again, I have been on lots of medications, including strong pain meds that make it hard to focus enough to read or write. I haven't been on facebook, my email, or this blog unfortunately. My chemo ended about a week ago, so now my white cell count is zero and more painful side effects keep popping up. I've also been really weak since chemo, so besides a couple of (very slow) walks around the floor, I've mostly been watching TV in between having to be examined by a million doctors and residents every day. I find it pretty overwhelming and annoying to answer the same questions the same way over and over again. Anyway, I felt a little bit better this morning and I wasn't able to sleep because of the pain so I decided to distract myself by writing a blog post no matter how slowly I have to go to make sure everything makes sense! :) [Update: with breaks for taking meds and doctors needing to examine me, it took about 4 hours...yuck :P]

Health update: As my mom already informed you, I am in remission now!!! I will still need the bone marrow transplant, but also as we previously shared, my little sister Mary is a match for me. She'll be donating her stem cells rather than donating actual marrow, so she will just be hooked up to a machine by IV that extracts the stem cells from her blood and puts the blood back in. It's amazing how far medicine has come! It's a little hard to be excited about remission and having a donor when I'm dealing with pain and a little bit of nervousness about transferring to a different floor and having new challenges to face soon when I move to the transplant unit. My counts, as I said, are pretty low right now but thankfully in the last couple of days I've had a little bit more energy, specifically in the morning. However, I do get tired quickly, and even simple things like having a conversation with someone or standing up for too long make me exhausted. I am crossing my fingers and praying like crazy that my counts go up in time to go home for Christmas! If I don't get to, at least I have a beeeee-autiful Christmas tree from the Child Life Specialist I've mentioned before, Megan.

You can also see all the wonderful cards and pictures I've gotten from people! I haven't thrown ANY of my mail away, so thanks again to everyone who's sent cards and pictures. They absolutely make my day...and each one is a treasure!! :)

And, on the subject of Christmas, my cousin Eva was so sweet to paint my nails to cheer me up when she came to visit...look at her awesome work!!

Santa, Santa's belt, present with silver ribbon, and candy cane :)

I also wanted to mention a huge THANK YOU to the Plainfield Library for collecting scrapbooking supplies for me! My mom is bringing it later today and said she couldn't believe how much stuff there is--I can't WAIT to see it!! I am making a scrapbook of this journey but the art room here didn't have much scrapbooking supplies. Although it sounds crazy to want to remember this horribly painful time, fighting cancer is a part of my life now, and I do want to remember the good that comes from this...because although there's a lot of suffering at the moment, I know that God has made good come from this situation. I'm closer to my parents, I take fewer things for granted and have a new definition of contentment, and it is BEYOND overwhelming to learn how many people care about me and love me, even strangers who have simply heard my story. Anyway, thank you so much to everyone at the library for the scrapbooking supplies...I will definitely post some pics of my pages when I do them!

On a final note, another HUMONGOUS THANK YOU!!! to everyone who attended my 100 days for Sarah fundraiser! When I was told how much was raised, both on that night and on the website, my jaw dropped and I cried at how generous everyone is. Thank you so, so, SO much for your generosity. You all have made it possible for me to have the best care from one of the very best transplant doctors, and I could never thank you enough. Thank you even more to everyone who put all of it together. You are AMAZING!!! :D

Trying to think if there's anything else to update you guys on...can't think of anything off the top of my head. So I want to wish you all a very, very merry Christmas and a billionth thank you for your support and love!

love love love,

Sarah

<3

Expectant Hope

This is Sarah's Mom, posting on her behalf, as our tough cookie is not feeling up to writing...yet.  She will soon.  But she gave me permission to share with all of you the latest from Loyola Medical Center!  Before I begin, let me thank all of the wonderful people who have participated in the Flat Sarah project on Facebook--she has enjoyed seeing the places that Flat Sarah has travelled!

As most of you know, Sarah had another bone marrow biopsy and lumbar puncture on Monday.  These are very uncomfortable procedures, but the doctors and nurses adjusted her medications for this one and Sarah tolerated it much better than in the past.  We were told that results would be ready at some point on Tuesday.  Since the cancer had not gone into remission after round one of chemo, the doctors gave her much stronger chemo for round two.  It was a tough battle for Sarah.

On Tuesday, just before noon, as we waited for results, we had a visit from one of the wonderful chaplains here at Loyola.  This young nun knows Sarah well now, and when she learned that we were waiting on big news, she hurried back down to the chapel so that the noon Mass could be offered up for Sarah.  When she returned, she spoke about the start of Advent.  Just as we begin Advent longing for the birth of our Savior, she reminded us that Sarah and our family are in a season of longing as well.  We wait, she said, in expectant hope.  That phrase really resonated for us.

A short time later, both oncologists visited to give us the news: Sarah's cancer had been brought under control and was in remission.  Remission!  There were lots of tears and hugs.  Remission, however, meant an immediate start to round three of chemo.  It is important to keep the cancer under control since Sarah's type of AML leukemia is stubborn and tough.  Patients who go into their bone marrow transplant while in remission have the best chances of recovery.

Since Sarah had been hoping to have a little break from the hospital, the news that round three would start right away was a bit sad.  Remember, Sarah has been on the oncology wing since October--she cannot leave the floor and has not had a breath of fresh outside air--or felt raindrop--or felt the wind on her face-- since.  Still, the incredible news about being in remission overcame that slight disappointment.  So far, our tough cookie is tolerating the chemo pretty well.

One wall of her hospital room is so cheerful; it is packed with cards and notes and hand-drawn pictures that people have sent her.  These surround her wall clock, so when she is having a tough time and we look at the clock as minutes pass, she sees so many expressions of love and support.  I printed out a quote from Winston Churchill: "If you are going through hell, keep going."  And she is!

Expectant hope.  We wait--Sarah's family, her friends, her sorority sisters, her caregivers, even strangers who have heard about her fight--in expectant hope that this round of chemo goes by quickly and as smoothly as possible.  We have expectant hope that the next step on this journey, which will be going upstairs to the bone marrow transplant unit, will be a seamless transition.  And, of course, we have expectant hope that God will bring a complete healing to Sarah.

So, as we all look forward to the Christmas season, please keep Sarah in your prayers.  And when you want to complain because it is too cold outside, or raining, or windy, think of our tough cookie and enjoy the snow and ice on behalf of Sarah! : )

I'm sure Sarah will post soon.

Love,
Mrs. Wielgos

On the Upswing

Hi friends and family,

I know it's been way too long since I gave anyone an update. Last week I had to have a really uncomfortable procedure followed by having to have tubes sticking out of too many places and me being absolutely miserable, not to mention having a neutropenic fever for a few days and horrible nausea. If I'm being honest, some of those days last week were honestly the hardest I've ever had to go through. My Mom stayed by my side the entire time and helped me through everything. I'm still having pain and not back to normal yet but I'm MUCH more comfortable now than I was at the beginning of the week. The good news is that my good cell counts are FINALLY starting to go up, so things can only go up from here!

I've continued to be overwhelmed by how far my story is reaching and how much support I have. I absolutely love the "Flat Sarah" group on facebook and all the cool "places I'm going." :) I also have seen a video of a special cheer the Plainfield Central cheer squad did while wearing shirts for me, and a group dedicating the song "The Middle" to me while holding up "Flat Sarah." It's amazing how many people care and are reaching out to me especially during this really, really tough time.


Hello world, Evamarie, Sarah's cousin here! Sarah asked me to finish up this blog post for her with a guest blog. Here is some of the love on her wall from all of you. I couldn't even get a picture with all of it in. Thanks for the pictures and love. Sarah received her Kindle Fire last week and she is starting to feel good enough to use it. She hopes to download some books and movies soon with an amazon gift card that was given to her from the Bare Necessities Charity.

HUGE THANK YOU to all those that have ordered Tshirts or donated on http://sarahwielgosfund.com/   Sarah is so grateful for all the donations and love. Sarah is currently resting comfortably while we watch TLC, Enchanted, and Family Guy. She still laughs and jokes like nothing has changed at all. Although she is in pain sometimes, she will be back in full swing soon. Sarah's nurses are amazing and very patient and kind to Sarah and we thank them alot. 

What can you do?

-Donated on Sarah's website or buy a Tshirt

-Write on Sarah's facebook group and leave some love. I always read them to Sarah when I visit since she hasn't felt up to being on facebook

- Take FLAT SARAH with you! Go onto "Flat Sarah" on facebook and print out her picture. Take Sarah to the grocery store, mall, park, or anywhere. She was laughing hysterically over the ones that have been posted. 

We love you Our Tough Cookie. 

Love,
Sarah and Evamarie

Balance

I don't really have a plan for this post, so it's basically going to be me rambling about random things I've been neglecting to blog about. Right now, I'm still extremely frustrated at having the same pains and nausea for days and days without change. I'm limited in some ways on medications because of my counts being so low, so even on the strongest meds the doctors can give, I have pain and bad nausea throughout the days and nights. Unfortunately, patience isn't my strongest virtue and it's beyond frustrating to wake up every day without improvement in the side effects I still have from my chemo that was a week or two ago now. Since the chemo was stronger, my body is taking longer to recover the good cells I need to start feeling better again. So that I'm not just focusing on the pain and making it worse, I am trying so hard to count the little blessings...recently, my doctors have been successful with a strong anti-nausea treatment that gives me hours at a time without my stomach churning, and it's helped me to be able to have an appetite and eat something; I have also been blessed with fantastic nurses who do everything they can to understand my pain and hold my forehead if Mom or Dad isn't there to.

When I really think about it though, I have LOTS of little blessings in the stories, cards, letters, messages, texts, and other encouragement people have given me. I want to give a HUGE THANK YOU to so many people:

-Everyone who has reached out to me recently by mail or unexpected gifts; they warm my heart, make me smile, and lift me up more than you know :)

-My Kappa Delta sisters, some of them freshmen I haven't even had the pleasure of meeting yet, sending package after package of halloween goodies, magazines and nail polish, a book full of cards I sobbed while reading, and even gorgeous hand-painted art to decorate my boring hospital room walls.

-To both of my Grandparents, Grandma and Grandpa Loebig and Wielgos, for the continual cards and packages to cheer me up,

-To my cousin Evamarie, not only my cousin but one of my best friends, for coming and having to watch me sleep numerous times but making sure I know that she's always by my side, doing whatever I need.

-To my family at school, my Oriflamme teammates (GO ORIFLAMME! GO WORLD!), the Relay for Life committee I was going to join this year who also reached out to me, and to all of the people, some I don't even know, who've sent messages of love and care and a desire to join me in my battle,

-To all of my family friends, especially the Lotz and Cemeno families, who are pouring themselves into multiple fundraising projects and support methods for my family,

-To the groups who have come together to show what multitude of supporters I have, the Ruedin's 4h group and their family, The Paul Mitchell School of Cosmetology that my cousin Rachel goes to, my Aunt Lori's CCD class, and all other groups who've reached out to me,

-To the wonderful nurses who take amazing care of me, and the staff here at Loyola who makes this floor feel like home

-To the other cancer fighters or survivors and their parents who have reached out in understanding of what my family and I are going through, like Andrew's Mom, the other kids on this floor, the staff at the Ronald McDonald house, and especially my Aunt Patty and Uncle Tim and Aunt Patty's parents (Grandparents-in-law? :)),

-To every friend and relative, near and far, who share their prayers, thoughts and love with me every day!!!

-To every stranger who also shares your prayers, thoughts, and love with me every day without even having met me in person...

No matter how horrible it is to go through cancer, somehow the good and love I see around me seems to almost balance out the bad, as crazy as that sounds. When I'm in pain or I'm brushing my teeth after an episode of nausea, sometimes I wonder how something can possibly hurt this bad. However, when I feel the incredibly overwhelming support of people literally all over the world, I wonder how someone can possibly feel this fortunate.

Because of your love, I'm still standing a strong, brave, tough cookie...and cancer STILL is not making me crumble.

<3,
Sarah

A Match Made in Heaven

A LONG-awaited hello to my friends and family! I've been trying to get up the energy to post for a while now. I'm not sure I'll get through a whole post, but my Mom finally encouraged me to at least type something today since it's been a few weeks since I've given anyone an update.

I promised everyone on this blog that I'd post the good and the bad, be honest about how I'm feeling or how things are going. For a while now, I've been in the really, really tough times that every cancer patient knows are coming but could never fully prepare for. At diagnosis I made the decision to fight for my life, to not back down or give up but to follow this journey all the way through. I knew my journey would involve pain and difficulty, physically, emotionally, and spiritually.

This is one of those times that things are painful and difficult, and I'm not the cheerful, positive, bubbly Sarah when I'm on a lot of meds and in a lot of pain. I'm trying to learn what is means to still be "Sarah" when I'm not in a cheerful, positive "Sarah" mindset. It feels like it takes so much energy to be social, so I haven't felt up to keeping in touch with any of my friends for the past couple weeks, which is definitely just not "me." I think the best way to cope with feeling so off is to remind myself that this is temporary. I'm going day-to-day, sometimes just hour-to-hour, focusing on getting through and finding a way to distract myself from pain.

When things seem to be at their worst, though, somehow the Lord finds little ways to remind me that I am not walking alone.  My Kaydee Ladies (sorority sisters!) have sent me so many wonderful care packages; I can never thank you all enough for the smiles you bring on the gray days.  The chaplains here at Loyola have frequently offered a prayer and encouragement.  The nurses here on the peds oncology ward are there for me and always willing to give me a little insight into real-life clinicals!  Thanks, too, to my new friend Father Gavin for his visits and support.  My "twin" cousin, Evamarie, visits me and cheers me up.  The cards, pictures, and expressions of love truly brighten my dark days.

Now...how about some GREAT news?!

To prepare for my bone marrow transplant, the doctors tested my siblings to determine if any of them is a match; if not, they would begin a search on the international bone marrow registry.  After much prayer, we learned that my sister, Mary Faith, is a perfect match for me.  Yes, that's my sis whose pictures are posted earlier on this blog!  What a blessing--each sib had a 25% chance of matching.  My brother, Ben, expressed no surprise at the news--"I knew it!  You and Mary both love to shop for shoes and for purses!  Of course you're a match!" he said wisely.  By the way, Ben is 11 : )

Some people have asked about my treatment timeframe.  Well, it's all up in the air.  A schedule for either more chemo or the beginning of transplant procedures is dependent on many factors that are complicated and tricky, like how my body recovers from this last round of chemo and whether those stubborn cancer cells finally bit the dust.  So, again, God is asking me to face the future day by day, trusting Him and His timeframe.

"Even miracles take a little time," reads a beautiful disney snowglobe that I received as a get-well gift.  I  am willing to wait on God's timing.  He holds me in the palm of His hand, truly.  Even during these difficult days, when I am not feeling up to posting on this blog or emailing or texting, know that I am fighting through it.  I am willing to do what it takes to overcome cancer and to use these days of both darkness and miracles to learn what God wants to teach me.

Please continue to pray for me, for my family, for the medical team which oversees my care, and for my fellow patients here at Loyola.  I might be knocked down, temporarily, but I won't stay down.  I am a fighter and a tough cookie...day by day...and I'm looking forward to my match, made in heaven!  Thanks, sis!

Love,
Sarah