Home, SWEET home!!! :D

Hey hey hey everyone!

I have FANTASTIC news: I AM FINALLY HOME!!! After spending over a month confined to a single floor of the hospital (because my immune system is so weak, I wasn't allowed to leave the floor at any time throughout the month), it feels INCREDIBLE to breathe in sweet, amazingly fresh fall air! Of course, I will only be home for about a week, depending on how my counts are with regular check-ups back at the hospital. After the week at home, I'll have to go back for another round of chemo, which will last about a month again. Leaving the hospital took FOREVER...doctor after doctor after nurse after social worker had to come see me before I was discharged, not to mention having to get my IV meds and clean everything out of my room. I was incredibly antsy and could barely sit still all morning! After a while, I was actually so overwhelmed and stressed from waiting that I went down to the child life room I blogged about last post and did some coloring to feel better. I was so glad that I went down there, because as my Mom took care of my prescriptions and took the first load of stuff down to the car, I got to meet a couple of other oncology (fancy hospital word for cancer) kids: an adorable little two-year-old boy named Jedediah (Jed for short), and a really sweet 12 year old girl named Jess. The floor we're all on is just a general pediatric (kids) floor, so it's not just for kids with cancer; pretty much every kid who's admitted to the hospital is on our floor. Because of the variety of cases on the floor, us oncology kids definitely have a special bond. We're always back and forth to the hospital for treatment, like chemo, and we all share a lot of the same struggles. It was so great to talk to Jed's dad, Jess, and Jess's mom, and Jess even taught me how to finger knit, which is such a fun activity to make the time pass! I talked to the two families about being discharged, and they both definitely sympathised with how frustrating the waiting process is. I was so relieved to not be thinking about when I would get to leave, and soon enough, the nurse and my Mom came to get me to go over the last set of instructions so I could go! When I stepped out into the amazing autumn air, every second of agitation over waiting vanished. I breathed in as much of it as I could through my mask, and once we got to the car and started driving, I stuck my head out the window a little to get as much air as I could. The trees we saw on the way home were absolutely gorgeous as well! Since it was still summer when I came to the hospital and I was in shorts and flip flops, it was crazy that a new season had come so quickly. I like fall though, so I was smiling almost the whole ride home...even with the traffic. :)

A note about visiting: now that I'm home, I know that a lot of people will probably want to visit, which is so touching! However, I will need to limit visitors because now that I am out of the hospital, it's even more important that I stay away from as many germs as possible. Since I am still recovering from chemo, still on strong meds, and still SEVERELY neutropenic (like I said yesterday, a word that means my immune system is shot), I may not be able to visit with many people depending on how I am feeling. PLEASE still call ahead if you would like to visit and my family will let you know if I am feeling up to visitors on a specific day. IF I am feeling up to it and you can visit, here are some guidelines to help you know how to best help me!

1. Any visitors need to be in absolutely PERFECT HEALTH!!! If you even have a small runny nose or any cold symptoms, visiting unfortunately has to be a no-no. Colds are actually one of the worst illnesses I could get because they can't be treated with antibiotics, and my body has absolutely no way to fight off a cold. So if you even feel just a tiny bit sniffly, let's skype or facebook instead!!

2. Before coming into my room, my Mom will direct you to hand sanitizer for your hands, and we may ask you to wear a mask and gloves. Again, this is just so that any little hidden buggies won't find their way into me!! Also, and this is the very hardest for me since I am basically the biggest hugger in the world :), but hugs may have to be a no-no as well. Germs can hide on clothing and unfortunately I just have to take every precaution I can! My family and I have been doing "hand hugs": holding both hands together.

3. I know I said it above, but just a reminder: please call one of us before visiting!!! If you call my cell and I don't respond, I may be sleeping or just having a rough day and not feel up to visitors. I will do my best to see as many people as I can, but my body is being a little unpredictable at the moment.

This is SO, so hard for me because I honestly want to just have every single friend and family member around me to hug and talk for hours and hours with! If you know me, you know I am a total social butterfly. :) However, part of this fight is being strong enough to make tough choices about when I need to rest and be alone, and even tougher choices about how to adequately control possible germs I could be exposed to. Please know that I still love each and every one of you just as much as I always have, but I have to make my top priority taking care of myself and not catching any illnesses.

I am BEYOND happy to finally be home...yay!!! Time to spend time with family, but as I said before I will have lots more pictures coming soon!

As always, love love and more love!

<3,

Sarah

Feeling better...FINALLY! (Also: One month since diagnosis...CRAZY)

Hellooooo from Chicago!

I have some GREAT news: since Sunday, I've been feeling more like myself than I have since starting chemo!!! WOW. I am walking like crazy now; I don't have to lean on my IV pole and hold my Mom's arm! I spend most of the day in the Child Life room here on the floor, where the amazing Child Life Specialist, Megan, organizes lots of crafts and activities for us. I just finished a really cool decoupage/collage box:

Cool, right? :) Crafting is AMAZING therapy for me. It keeps me occupied and distracted, so it's great to pass the time. Also, there are some really cool people who volunteer in the child life room, so it's awesome to meet and talk to so many cool people! I especially love hanging out with the med students who volunteer there as part of a peds interest group. Seeing as I'm on the kids floor, (as much as I love the little ones) it's great to have people around my age to talk to and hang out with. Today, I also met two 11 or 12 year old girls who decided that instead of asking for birthday presents at their big birthday party with all of their friends, they would ask for craft supplies to donate to the child life room! They were absolutely adorable and I could not BELIEVE how selfless that choice was! I thanked them over and over and chatted with them about what it's like to live in the hospital ("Do you have a bed here?" "What food do you eat?") and about what it's like to have cancer. They were SO excited to come back again so they could do some crafts with us. It feels INCREDIBLE to finally be feeling well enough to walk around and have enough energy to hang out in the child life room all day to meet some great people!

MORE good news: after a month in the hospital, I GET TO GO HOME on Friday! YES! I am still VERY neutropenic, meaning that my immune system can't fight sicknesses. If I'm exposed to someone who has a cold or even just a little runny nose, I could get REALLY sick and my body wouldn't be able to get rid of the infection. Although I'm really excited to see my roommate Megan this weekend and hopefully some other friends while I'm home, visiting is still going to have to be very limited. The more people I'm exposed to, the bigger chance I have of catching something...even just germs from their clothes from a hug or something crazy like that. Thankfully, however, for the first time in over a month, I will be able to GO OUTSIDE and get some fresh, non-hospital air! That is definitely what I am MOST MOST MOST excited about!!!

As I was typing, I realized that today marks exactly one month since the day I got the phone call that I had leukemia. This past month is a blur of confusion, disbelief, and absolute craziness...but it has also been a rush of support and encouragement, strength and the will to fight, and lessons that I would never learn otherwise. Thank you for an entire month of love, thoughts, and prayers!!! You are all INCREDIBLE people who have given me strength. Thank you! <3

I will be blogging again soon with more pictures I haven't gotten on my computer yet and hopefully more good news...from home!! Keep up the fantastic thoughts and prayers as you always do, and I promise that whether I am on an "Up" like now, or a "Down" like last week, I will never, never stop fighting. I love you all and I'm keeping tough!!

Quick shout out to all my SLU peeps: GOOD LUCK WITH MIDTERMS!

<3,

Sarah

:)

Missed Me?! :)

Hello again! I am SO sorry it's been so long since I last posted. I've been on some STRONG pain meds, so I've had trouble reading, writing, and even sitting up to use my laptop. Thankfully I have tons of DVD's from my Aunt and Uncle to zone out to! The last week has been a total roller coaster...lots of ups, lots of downs. I'm going to let my Dad give you guys an update since this is about as much as I can write and still make sense. :) Whenever my doctors let me off my annoying pain meds I promise to write a BIG post from me!!

As always, lots of love and I promise I'm still staying strong! <3

This is Sarah's Dad.

Sarah had a tough end-of-last-week, as she struggled with several painful issues. But starting Friday, her body started responding better to treatment, and Saturday and Sunday we started seeing the vibrant, happy, active Sarah that we all love. Saturday and Sunday, Sarah was determined to get some exercise, because her body started craving movement (a good sign!). She took four laps around the Pediatric floor on Saturday with her Mom, and on Sunday she broke her record by taking four more laps in the morning and five laps with me on Sunday night. Sarah's a favorite patient among the nurses and doctors here, and her room has become a place for them to "hang out" and talk. There's a lot of laughter in the room, and we've been told that her wall shows off more great cards from family and friends than most of them have ever seen. Like she says, there are times when the pain medication makes her sleepy or "spacey," but overall, she had a good weekend.

Several nurses have admired her window, where visitors draw pictures, sign autographs, and write encouraging messages. Keep praying for Sarah's healing! The Holy Spirit is very strong here! 

Ups and downs and ups and downs...

This is Sarah's Mom again...Sarah has had a couple of challenging days, so she hasn't felt up to posting.  But she thinks of all of you often and asked me to let you all know that she is a fighter and will get through all of this.  Sarah actually slept pretty well last night, and her appetite is starting to return, so I expect that she will soon be up to a new post.  I've decided to keep a gratitude journal with Sarah, listing all the good things that happen each day...like the stack of colorful scarves that a Girl Scout troop tie-dyed and donated for patients here...a visit from a wonderful SLU friend who delivered some cards and good wishes, too...a care package from her Kappa Delta sorority sisters...the sweet and caring pastoral staff here...the list goes on.  God is good, and so are His people.  Check back soon for a real update from our tough cookie.

Bald is Beautiful!

Hey there, everyone!

After my last post, I have the new report that, yes, my hair is almost all gone. Friday my smooth, shiny hair somehow became so matted and tangled that we couldn't get a brush through it...it must have somehow been from the chemo. My Mommy gave me a haircut and although I cried at the first few snips, I was SO happy when I looked in the mirror! She was able to save a lot of the hair in the front and on top of my head, and I actually thought it turned out to be a very cute style. Here's what it looked like that night:

For that night and most of Saturday, it was really comforting to have short hair to help me transition to being a baldy! Saturday night more hair fell out and I started getting some bald spots, so this morning I asked my fabulous stylist (aka Mommy :)) to cut it much shorter so the spots don't bother me as much. Now I have VERY thin, VERY blond hair that my Mom and I are calling "baby hair"! I have always had thick, brown-blond hair, but now it's super fine and a lighter blond than I have EVER seen in my hair! Since I have bald spots, I decided it was time to practice tying some cute scarves and bandannas around my head, so my Mom picked some up to try. I really like the look they give me, and my Mom keeps saying that my head is the perfect shape for scarves!! Haha!

I also got a surprise package today from my best friend's aunt and her family. I was overwhelmed with how far my story had spread and how much people cared that they would put together a wonderful gift to make me smile! One of the things in the package was a big stuffed animal doggy...I don't know if Julia told them a dog was my favorite animal, but I am IN LOVE with my new buddy!! I haven't named him yet, but I did want to take some pictures with him to show you guys my new 'do! Here's some pics:

Me with my pretty pink scarf! I love it! :)

My new puppy <3

We wanted to match...haha

Chi-Town pride!!! The sequined "cubbies" hat was a gift from one of our family friend and one of the BEST surprises ever...definitely my favorite hat!! Also, our Child Life Specialist here on the peds floor, Megan, has a friend who "blinged" my other cubs hat! LOVE IT!

I am realizing more and more that, as I said on my last post, beauty is so much more than physical appearance. I look in the mirror, scarf on my almost-bald head, glasses instead of contact lenses, no makeup, and a big t-shirt...and I can honestly say that I feel beautiful! I have this thing where I always smile at myself when I look in the mirror. It gives me confidence and reminds me how much beauty a simple smile can add to anyone's face. I did it when I was back at school and I wore cute clothes (that weren't pajamas!) and had hair and bothered with makeup, and now I still do it standing in my hospital bathroom. Yes, I've lost my hair and my contact lenses (too much risk for germs), but that doesn't mean I'm any less pretty than I used to be! I just have a few more accessories, and I think my glasses and scarves are pretty darn cute. ;) This experience is teaching me more about beauty and self-confidence than I would ever have learned otherwise, and I am so grateful for such a wonderful lesson I'll keep with me for the rest of my life.

Well, enough rambling for tonight. My nurse told me to tell everyone on my blog that the peds nurses on my floor say hi!!! They are the most wonderful team of people and I am SO blessed to have them all taking care of me and having my back. They aren't just treating my physical symptoms; they honestly care about my story, who I am, how I'm feeling, etc. It's amazing to have such a great group advocating for me!

To end my update, not too much has changed recently. I am still "neutropenic" from chemo, meaning my white blood cells, the cells that fight infection, are extremely low, so my immune system is pretty much gone. It's just a waiting game until those cell numbers to go back up and some of the painful side effects I'm having subside. Once all of that happens, I get to go home for a little bit before the next round of chemo! Yes! :)

Here are a few more pics for you guys, enjoy! Love love love all around as always!

<3,

Sarah

My cousin Evamarie and I built the most adorable castle EVER, complete with lots of surgical tape instead of glue ("everything included" was a lie!) while watching Grey's Anatomy :) SO much fun! Thanks Auntie Barb for the awesome kit!!

One more cool story: my little brother Ben's baseball coach made me an honorary member of the team by making a special jersey and hat for me..they even put my name on both!! For their tournament last week all of the boys put orange ribbons on their sleeves like the one on mine above as a sign of support for our family. It was AMAZING to get that uniform, and it was even better for my brother to know that his whole team had his back. THANKS, SWARM!! :D

Finally...I'm Back!!

Hellooooo, my beautiful family, friends, and supporters!!

I am finally feeling up to writing another post. Thanks to my Mommy for keeping everyone in the loop when I wasn't feeling so hot. However, today has been a good day and things are looking up in general! After the colitis that my Mom blogged about (some bacteria got caught in my large intestine, so I had to be on strong antibiotics and go without eating and drinking for 3 days), I have slowly started getting my tummy back to a normal diet, and now that the chemo is done for a little bit, my appetite is coming back as well! My favorite thing to eat right now? Chocolate! I still have a HUGE sweet tooth like I always have and I am loving a candy bar or brownie here and there. :) It feels so good to start wanting to eat again, and now that I am not on chemo and able to drink liquids, I also get to be disconnected from my annoying IV pole! MORE good news: aside from some painful side effects and having to be on some pain meds still, I am feeling really good physically. I have more energy and feel stronger than I have since my chemo started! It's funny how this experience is making me appreciate the little things in life: being able to eat again, going to the bathroom by myself, and not dragging an IV pole around with me are making me really happy and positive! I am learning not to take the little things for granted, and I see that lesson as a blessing.

On a not-so-happy note, I woke up this morning to hair on my pillow. Yes, it's finally begun to fall out. Because my hair is so thick it still looks like I have a full head of hair, but I can tell that it's thinner. When I run my fingers through my hair (and if you've ever spent much time with me, you know it's a horrible habit of mine! :)) they come out with a little chunk of hair. I've just been keeping a garbage can next to my bed so I don't have to look at it for too long. I have been really coming to terms with the fact that I am going to be bald soon, and I'm surprisingly not too upset about it. I told my Mom the other morning when we were talking about it, "I'm willing to do whatever it takes to fight, and if being bald for a little while is what it takes, I'm totally up for it." I have some really cute Chicago cubbie hats already and I'm planning on getting some pretty scarves to wear as well. The people that really matter in my life have already assured me that bald is going to be beautiful on me, and I trust them and agree with them. In my opinion, beauty is all about your attitude; the way you hold yourself, a genuine smile on your face, and eyes that care about the world around you. I've always believed that beauty is not in physical appearance, and losing my hair is going to be the ultimate testimony to that philosophy! It will be hard to get used to looking in the mirror and not seeing my thick head of hair staring back. But you know what I will see? The same beautiful face and bright smile I have always had...nothing, not even cancer, can take that smile away from me!

Another thing, a lot of people have been sweetly asking for my address. Since this blog is public I don't feel comfortable posting on here, but if you'd like my address please just send me an email at swielgos@slu.edu and I'll send it to you! Just being cautious with a little "stranger danger." ;)

I am so blessed to have such amazing family and friends around me. I've been feeling up to more visitors recently, and it's been absolutely wonderful to finally see my friends again! I'm putting some pictures below so you can all see how truly blessed I am! :)

As always, tons and tons of love to all of you and THANK YOU for the prayers and support. I feel your prayers and care every day, and it makes me stronger and brighter! <3

Love,

Sarah


Here's a picture of when my little brother and sister came to visit me! This is us watching How to Train Your Dragon :)

Here's my friends Julia and Mary who came to visit! Such an awesome surprise and SO nice to have our girl talk as if we were sitting at a Starbucks rather than my hospital room

This is me with one of the pet therapy dogs that come to see us every Wednesday!! It's definitely the BEST day of the week!

Here on the peds (pediatric) floor, we also had a really awesome volunteer who did henna tattoos on our feet! She was actually a leukemia survivor who was also treated here and wanted to come back now that she's in remission to hang out with others who are going through what she did. It was amazing to get to talk with her and learn about her journey, and I LOVE my henna!! Henna is an Indian tradition and, don't worry, it's only temporary! :)

<3 <3 <3

One day at a time!

Hi--it's Sarah's Mom again.  It has been another long day, but the good news is that she has FINISHED HER FIRST 10-DAY CHEMOTHERAPY TREATMENT!!!  Hooray.  We will celebrate when she is feeling up to it.  So far, we have had a few good laughs over some ridiculous cable TV shows like "Breaking Amish" (kind of interesting in a weird way) and "Secret Princes" (none of whom, by the way, is remotely good enough for my girl.)  Also, Sarah has compiled some really funny leukemia pick up lines ("Hey, girl!  Wanna see if we're a bone marrow match?") which she will have to blog about when she feels better.  Remind her if she forgets!  A highlight today was when the phone rang in her hospital room...I answered, and it was Father Biondi, president of Saint Louis University, calling to express his care and the concern and prayers of the community.  What a kind and thoughtful gesture from a very busy man.  One of the reasons this has been a tough couple of days is that Sarah developed a form of colitis common to neutropenic AML patients; it is a blessing that the doctors caught it early, but Sarah now cannot eat. Or drink. Anything...until the doctors feel her intestines are clear.  So, as you can tell, although Sarah is still not feeling too good, she still has moments when she can smile and joke about things.  I am sure that now, since she finished her first round of chemo, she will slowly gain back her strength and battle back from all the crummy side effects and post again soon.  Please continue to pray for our girl.  She is a warrior.
Peace, Mrs. W.