Tough days for a tough cookie

Well, this is Sarah's Mom writing an entry...Sarah doesn't feel up to posting today.  She has had a tough couple of days with the side effects of the chemo.  But she wants to let her friends and family know that she sees this as a marathon, not a sprint, so there will be good days and bad days.  She is working to keep her spirits up and she is focused on the better days to come.  Words can't express how much your love and support, through your comments here, along with your cards, texts, and emails, have blessed her.  Sarah is an incredibly strong and faith-filled young woman.  Please continue to pray for her, and I'm sure she will soon be posting more updates here.

Some Good News, Some Bad News...But That's Life, Right?! :)

First of all, I have some great news to share! Today marks HALFWAY through my first chemo treatment!!! YES! Now, I know that I mentioned my chemo "cycles," which will be about a month each...since today marks a week since my diagnosis and admittance into the hospital, obviously I'm not halfway done with a whole cycle yet. I'm just halfway done with the crappiest part of a cycle! ;) This "cycle" includes 10 days of the actual chemo, and then about two and a half more weeks after the chemo of resting until all of those good cells come back to the right amounts I'm supposed to have in my body. Today marks 5 days of chemo, so just 5 more to go! Chemo makes me feel really tired and sometimes gives me nausea, headaches, or dizziness. Luckily the hospital has GREAT anti-nausea meds so when I feel really sick, I am usually able to get something to help me sleep through it and feel better when I wake up.

Although I'm tolerating it pretty well, the worst thing about the chemo is how it effects my appetite. When I was trying to explain to my Dad how my body feels about food, the best description I had was "You could put a slice of Cheesecake Factory cheesecake in front of me and I wouldn't want to eat it." Food has become something that I have to force myself to eat so that I have enough energy and nutrition...but as the days have gone on, it gets harder and harder to eat. It's really tough to have the pleasure of even the yummiest foods taken away for a little bit. Thankfully though, the hospital has LOTS of meal-replacement drinks that I can have along with whatever food I feel like I can get down, and I saw a dietitian today to discuss how I can maintain my nutrition and weight in my food struggles. I had kind of a realization today: so many women fantasize about being able to lose weight, and some even go to desperate measures to do so. But then, here's me, being disappointed about losing weight and wanting to put it back on as soon as I can!! I genuinely love my body and really want my figure to stay as it is for as long as I can maintain it. I think I have really taken for granted not only food itself and having the appetite to eat healthy and nutritious foods, but being able to maintain a healthy weight that makes me feel good about myself. However, all of this being said, I have heard that after the actual chemo is done (5 more days!!), my appetite should go back to normal and those two and a half weeks will be a perfect time to get all my favorite foods back into my tummy. :) My Mom told me a few days ago that one of her wonderful friends is fasting for me, and even though I don't think my Mom had told her about my food struggles, I cried when my Mom told me. In addition to the spiritual aspect, it felt so cool to know that someone else was giving up the pleasure of food for a day like I am while I get my chemo. Obviously I am willing to do whatever it takes to fight!!!

Now for a little bit of bad news. I believe I had explained that my type of leukemia is AML, but that I didn't yet know whether I was high or low risk. The GOOD news is that after looking at all of the genetic info in my bone marrow, the doctors learned that I do NOT have the flt 3 gene (I believe it's called), which would make me very high risk and would make this a much harder fight. However, the unfortunate news I have to share is that my chromosomes do show that I am high risk, which means that I will need a bone marrow transplant after 3 cycles of chemo. Thankfully, after sharing this news with me, my doctor right away said "Don't worry...YOU WILL BE CURED!" He had no doubt that I would be able to find a donor, and while this will add a few months onto my treatment, my doctor assured me that I will be in remission and totally cancer-free after my transplant! I am not sure doctors are technically able to promise things like that, but he definitely came as close to a promise as he's allowed to. So, after my 3 months of chemo, it will be about 4-5 months total filled with preparing for the transplant, the actual transplant, and my recovery. Even though it's a little longer than I had been crossing my fingers for, I am completely up for this battle, no matter how long it will be. I am strong, I am tough, and I have faith that God has HUGE plans for my future...I'm not stopping here! Again, this is just a detour I have to get through in life, and while it's not going to be an easy journey, I am more than ready to give everything I have to make myself well again!

For some brighter news again, tomorrow I will update you on some of the happy stuff that I've been up to with the volunteers here on the peds floor, including pictures of getting some awesome henna and....get this....a visit with PET THERAPY PUPPIES!!! :D They do a great job of making sure we don't get too bored here. Who could possibly be unhappy around the best animals known to man?! ;)

I love you all and thank you thank you thank you for the thoughts and prayers!!! I am fighting HARD and I promise not to stop until this cancer is 100% GONE! :)

<3,
Sarah

Tuesday Update!

Good morning!!! This is me, still smiling big, and my little bear who's been by my side :)

I just logged on again to give you guys another little update and I saw how many people have seen my blog so far...all I can say is WOW!!! I absolutely cannot believe how many people have been reaching out to me since my diagnosis and how much support I've received during this crazy, challenging time. Once again, all I can say is thank you, thank you, thank you. All of the messages and such I read give me more strength than you guys could ever know. Thank you also to all who have been reaching out to my family recently. Although  I don't know a whole lot of what's happening at home as I am focusing on getting better here at Loyola, I know that there have been so many friends and family helping my family to have what they need so that they can all be here for me. So again, although I know I say this over and over...thank you!

Now for an update! Sunday night and Monday were just kinda crappy. I knew going through chemotherapy wasn't always going to be easy when I signed up for it, and I was right. Thankfully I had my Daddy and Mommy to get me through the tough stuff, holding my hand and letting me cry. I've learned a lot that being strong and tough during cancer treatments doesn't mean always having a smile on. It means learning how to cope with the pain, learning how to get through it without giving up. I'm learning that going through chemo is a roller coaster: sometimes I feel fine and I'm laughing and watching movies with my family, but sometimes I feel really, really sick and I need to cry or sleep or just hold my parents' hands through those times. No matter how sick I feel sometimes, I know that my tears are tears of bravery. I am courageous enough to go through some really painful, tough stuff so that I can beat the nasty cancer in my body. And trust me, no matter how much it might hurt...I will never, never give up. I know that after the painful symptoms have made their way through, eventually I'll get to the top of the hill on that roller coaster again. 

I also wanted to answer some questions that I'm guessing a lot of people are asking. I know it's sometimes awkward to ask certain questions, so I decided to just put them out there! 

1. Am I going to lose my hair? The answer is, unfortunately, yes. If you've known me for a long enough period of time, you know that in middle school and high school the WORST threat my brother could make at me was cutting off all my hair! Yes, I love my hair and I wish I didn't have to part from it for a short time. However, my friend Emily who also has cancer has assured me many times that "bald is beautiful" and she is absolute proof of that phrase! I need to fight this cancer with everything I have, and if it means I'll get better, I'm totally up to losing my hair for a little bit. There are SO many cute scarves and hats out there, and I'm especially excited to get to rep my cubbies more often!! :) I am willing to do anything to beat the cancer inside me, including lose my hair for a short amount of time. Bald is beautiful!!!

2. Since my blood cell counts are low, what kind of rules does the hospital want my family and friends to follow? Basically what that means is that as the chemo is killing off the bad cancer cells, it also kills some of the good cells that my body uses to fight infection. If I catch something like a cold, my body may not be strong enough to fight it. The doctors want to make sure that all my family and friends know that if they come to visit, they NEED to be 100% well! As much as I want to give everyone I know a huge hug right now, if you have a cold or virus or even just a runny nose, it's better to call or skype me for the time being. Also, the doctor has told me that I can't have fresh flowers in my room, so although all my many secret admirers see this as their chance to give me a dozen roses ;) any flowers I get will have to be at the nurses station for me to come out and see when I can. I guess flowers and fresh fruit can harbor bacteria and other microorganisms that could possibly make me sick, so they're a no no for now...even if it's a bouquet from my prince charming. ;) They said that stuffed animals are fine as long as they are brand new and haven't been exposed to anyone who's sick.

3. Can I come visit? I absolutely LOVE getting to see everyone that I miss so dearly! However, those "down" parts of the roller coaster can come unexpectedly, and it's hard to have enough energy to talk and hang out when I'm not feeling good. The best thing to do is text/call me or my parents when you're thinking of visiting, and if it's a good time, plan to call again a few hours before you leave. Hopefully it'll be an "up" day, but if it's not, we can plan a time that would work better!

I am feeling pretty good this morning, so I am thinking that today is hopefully going to be an "up" day, or at least an "up" morning! I'll continue to keep you all updated on how things are going and I love you all very very much!!!

<3,

Sarah

A much-deserved HELLO to my dear family and friends!!!

You have NO idea how long I have been wanting to update each and every one of you on the absolute CHAOS that has been the last few days! However, between all of the crazy procedures/tests I had to have from the moment I was admitted to the hospital and starting chemo recently, it's been hard to find time when I feel well enough to text, call, respond on facebook, etc.! One of my wonderful friends who was diagnosed with cancer last year started a blog to keep all of us posted on how she was doing. It's a great way that you guys can all have the latest updates on how I'm doing and share with whomever you wish! I'll post as often as I can or ask my wonderful parents to post sometimes.

I wanna start with explaining how I was diagnosed and why this was so sudden. When I was back at school last week, I came down with a horrible virus that included my throat swelling so much that I had trouble even drinking water. I had had strep the first week of school treated with antibiotics, and got sick just a couple of days after finishing the antibiotics. My amazing roommate took me to the ER where I was diagnosed with strep throat again, given more antibiotics and painkillers, and sent back to my apartment. However, the next day nothing was improving, and once I starting throwing up all of the pills, my roommate once again took me back to the ER, where they did bloodwork to see if I had mono. My doctor told me that my blood counts were unusual so I should be admitted to the hospital immediately. After calling my mom, I decided that it would be better to come home so that my Mom and Dad could take care of me, and instead of being admitted in Saint Louis, I went to see my primary doctor back at home. He ordered more bloodwork, told me it could be a variety of things making my bloodcounts weird, and I was sent home for the night. The next morning, the hematologist (blood doctor basically) called me and told me on the phone "You have leukemia." I absolutely could not believe it. I broke down right then and there, shaking, crying, and hugging my Mom. The hematologist told me that she had already contacted Loyola hospital in Chicago and that there would be a room ready that afternoon so that I could start chemotherapy treatments immediately. I literally went from thinking I had mono or strep to being told that I had cancer and would have to have chemo right away. My entire world suddenly turned upside-down. Many times with leukemia, there aren't warning signs until it's pretty far advanced, so that's why it was such a shock that I had it since I didn't show any symptoms besides a low immune system because of my white blood cell counts being low and the presence of cells called blasts in my blood. Now that I look at it, I feel absolutely blessed that I was in the ER that night; otherwise, I really don't know when this would have been caught. God works in crazy ways!

I was admitted to the pediatric (kids :)) floor in Loyola hospital in Chicago, and I absolutely LOVE being on a peds floor! the nurses are really great, and if you know me at all, the very BEST part is the HUGE closet of DISNEY MOVIES! I mean any disney movie you can possibly imagine. :) Going back to being admitted though, the first couple of days were full of blood tests, a bone marrow extraction and spinal tap (ouch!), and getting a port placed in me so I can receive my IV meds better. After making it through the bone marrow biopsy, I can literally say I can make it through anything now!! Your marrow is the inside part of your bone, so they have to make a little hole in the bone and suck some of the fluid out. I squeezed my Mommy's hand during that and my Daddy's hand during the spinal tap, and after those procedures I feel like an incredibly strong woman. After all the craziness of those procedures, now they have started my chemotherapy, which I'm responding well to! They have lots of great anti-nausea meds that they keep me on 'round the clock so while I do have times when I feel a little sick in my tummy, I'm not throwing up and I'm eating great! I have been feeling really weak; trips to the bathroom and back leave me a little short of breath and tired. However, that's actually a good sign because it means the chemo is working to kill all these nasty cancer cells...and, once I'm done with chemo, I'll be able to regain my strength!!

As far as the leukemia itself goes, leukemia is cancer of the blood. Basically, my bone marrow, kind of like a cell factory, isn't making adult cells like it needs to; many of the cells, especially white blood cells that I need to fight infections, are coming out of the factory as baby cells that can't do what my body needs them to. Those baby cells are called "blasts." The type of leukemia I have is called AML, and there are two possible treatments I could need depending on whether I am high or low risk. To explain, while most cancers are labeled with stages depending on how far the cancer has spread, since leukemia is in my blood and already goes all around my body, it's diagnosed as high or low risk. I won't know which I am until the lab results from my bone marrow come back next week, but here's the scoop: if I am LOW risk (praying!), I simply have to have 4 cycles of chemo (about 4 months), and that should put me into remission...which means, CANCER FREE! If I am HIGH risk, it means I will have 3 cycles of chemo and then I will definitely need a bone marrow transplant. Although it sounds scary, I have been reassured by my doctor that I have a good chance with finding a donor, especially with so many siblings. A note to all my KD sistas and SLU friends: if you signed up to be a bone marrow donor (when they had you swab your cheek), you're now in the database to be a donor for me if I end up being high risk!! Pretty cool, huh? :) Overall, my doctor is EXTREMELY confident that I will be in remission soon! The plan of care he is using for me has put every single one of his patients he has treated with AML into remission, so I have no doubt whatsoever that I will be cancer free soon and back to nursing school at SLU!!!

Lastly, as everyone is asking...how am I doing with all of this? Surprisingly, I feel SO hopeful. I do believe that everything happens for a reason, and while I don't know why God has me here, I know that he will make good out of this situation somehow. Yes, I have cancer. And yes, it is going to be a long journey that is not going to be easy. However, I am STRONG, I am TOUGH, and I know without a doubt that I will beat this!!! I know that God has some amazing plans for my life, so I know that this stupid leukemia is just a roadblock I have to get through.

A HUGE HUGE HUUUUUGE THANK YOU for the beautiful messages, texts, comments, and support! I smile and cry reading each and every one. I know that I haven't been able to reply to everyone individually because of all I've been through in the past few days, but every message gives me strength to keep fighting.

I love you all and will keep you posted on how I'm doing! Just remember that cancer can't make me crumble; I am one tough cookie :)

<3,

Sarah