Thursday, December 20, 2012

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




Wednesday, December 5, 2012

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