Monday, January 14, 2013

There's No Place Like Home...For Now. Finally, the Final Info About My Bone Marrow Transplant!

I wanted to add to the title: *clicks sparkly shoes together*...but it was just too cheesy to use a Wizard of Oz reference, and I was worried younger readers may not even understand the reference anymore! :) Anyway, I have LOTS of HUGE news to share that I know many of you are really eager to hear!

First of all, yes, I am finally HOME and it feels absolutely incredible! Getting to see both of my parents and my 3 younger siblings on a daily basis is a wonderful treat after spending so long in the hospital. I even got to see my older sister, who's normally away at school, for the first few days I was home since she was still on Christmas break! In case you've lost track, I've been in the hospital since September 19th, minus the one week I was allowed home between the first and second rounds of chemo sometime in the fall...October-ish? finally spending some time as a family was something I've missed being gone for so long. After the second cycle of chemo I was finally in remission, so my doctors wanted to start the 3rd cycle immediately rather than letting me go home for Christmas. When I posted that I was in remission, my INCREDIBLE friends and supporters I met my first summer working summer camp at Lifetime Fitness, Maryclare and Olivia Flores, made a video with their acapella group at Depaw University. I do want to say that I have had a HUGE number of videos posted in support, including one I'll talk about later from my sorority sisters, and I will definitely be including links to other cool videos people have made in future posts! However, I remember my Mom showing me this video in particular one night at the hospital, and I just remember sitting there absolutely SOBBING into my Mom's shoulder. It was so overwhelming (in a good way!!) to know that an entire acapella group of mostly strangers wanted to dedicate a song to me at their concert in front of what sounds like a big audience! In addition, the song that they chose was so perfect.  Here's a link if you'd like to watch!

I posted this video in particular because I do have some news to share that at first will sound like pretty bad news; however, I PROMISE that it's not really that bad after all.

The reason I went through those first 3 cycles of chemotherapy, which I am FINALLY DONE WITH!!! :), was to prepare my body for my bone marrow transplant and hopefully get me into remission before the actual transplant needs to be done. We were told by my Pediatric doctors that the less cancer in my body at the time of transplant, the better my outcome will be. Back in December when I was told that I was finally in remission after my second cycle of chemo, my parents and I were SO happy! Although I was disappointed that I didn't get to go home for Christmas, I was totally fine with missing ONE Christmas out of a lifetime of Christmases if it meant I'd stay in remission.

After my 3rd cycle of chemo, I had a final bone marrow biopsy to make sure I was still in remission before sending me off to my new transplant doctor, Doctor Stiff. Before I keep going, I want to take a minute to talk about Dr. Stiff. Quite a while ago, I had to make a difficult decision of where I was going to have my bone marrow transplant; at Loyola, they don't have a pediatric transplant team, so I'd have to transfer to the adult transplant service. When I was first admitted I was on the adult oncology service for the 3 cycles of chemo that were planned, and I didn't have a great experience with the adult doctors. Transferring to peds made me much more comfortable and happy. However, meeting with Dr. Stiff changed my perspective on adult medicine at Loyola. Although he doesn't have the best bedside manner, which I had been warned about numerous times, he honestly treated me as an individual. I knew that to him, I wasn't just another chart or another patient. I was Sarah, a patient with a very specific type of Leukemia that he had treated many times in the past. He already had a plan for me based on the top-of-the-line, brand new research he kept extremely informed on, and he did his best to joke around with me about the Cubs vs. the White Sox (Go Cubbies!!). I also learned that he is a world-renowned bone marrow transplant doctor,  and that people literally come from all over the world just to get a bone marrow transplant from him! After realizing that I was extremely blessed to have the opportunity to be treated by this doctor, I knew that being treated by Dr. Stiff and his team was going to be my best bet for a successful transplant. Prayer played a huge part in choosing a hospital and a doctor, and I still believe that God's plan for my transplant is to have the transplant from Dr. Stiff. Thank you to the people who were praying constantly for the "decision making" that my parents asked others to pray for to have a firm answer. After all of the prayers, God made the answer extremely clear to my parents and me!

Going back to my earlier story...after my 3rd cycle of chemo and the bone marrow biopsy done after, I got what I thought was horrible news: I wasn't in remission anymore. To be classified as "in remission," I had to have less than 5% of "blasts," or the leukemia cells. Instead, I was at 7%. My Mom and I began speculating what that meant for the transplant: more chemo? A worse outcome? Did it matter that I was only 2 or 3 percent over, rather than being 10 or 20 percent over? We had never been told that I had a chance to relapse after reaching remission, which also made us both feel like the truth had been withheld from us for however many months since we celebrated remission. If I had been told there was a chance for relapse, I think it would have made the news a little less shocking. Thankfully, the very same day we were told the bad news, I had an appointment with Dr. Stiff to go over the plan for my transplant. When we met with him, he explained to us that with my specific type of Leukemia, he wouldn't have considered me "in remssion" unless I had reached 1 or 2% instead of the 7% I was at...and, more surprisingly, I only had a 2% chance of even reaching remission because of the complications of my type of Leukemia. Again, this news was a shock to my Mom and me, but we were comforted when Dr. Stiff told us that he wanted to proceed in the exact same way he had had planned for a while now. No extra chemo, no hoops to jump through; Dr. Stiff anticipated that I probably wouldn't have been in remission anyway and planned accordingly. I still have a great chance of successfully making it through transplant, contrary to our previous notion that I'd need to be in remission before transplant. We had a little bit of a sigh of relief before LOTS of big news.

As we sat in Dr. Stiff's office and he told us exactly what was going to happen over the next few months during my transplant, I held back tears because of how overwhelming all of the information is. I was able to stay calm and collected while meeting with the doctor, but the second he walked out of the door, I lost it. Hearing things like "At this point of transplant, a simple cold can kill you" or, "I've had patients who have relapsed as early as 30 days after transplant" is really scary and hard to hear. However, as hard as it was, I appreciated so much that he was willing to be absolutely upfront and honest with me and give me all the details of what I was going to be going through. I want to share with all of you a basic plan of what my transplant will entail:

- I'll be at home for about 3 weeks total, going in for my transplant sometime at the end of January. During this time, I'm strengthening my body as much as I can with breathing exercises, walks, and trips up and down stairs to help me be as strong as I can when I have to go back for transplant. I also have LOTS of tests I have to have back at Loyola during this time.

- Next, I'll have 4 days of twice-a-day radiation (which is totally new for me) at Loyola. We haven't decided yet whether I'll have to be admitted or whether I'd be able to do it outpatient and come back home every night. After radiation, I'll be admitted for 2 days of chemo, which will be pretty uncomfortable. This is all to wipe all the cells out of my bone marrow to prepare it for my sister's healthy donor cells!

- My sister will come to Loyola on the day of my transplant, which will be very soon after I'm done with the chemo. They'll take the stem cells out of Mary with a special machine I've talked about in the past (they do it by IV, so Mary won't have much pain besides some needle sticks), and put the cells right into me.

- My transplant is considered "day zero." From then, I'll have about 2 weeks of recovery in the hospital.

- After recovering, I'll go to an extended-stay hotel that works with Loyola for cleanliness and such, and start my "100 days of isolation." I won't literally have to be isolated for 100 days; I'll be able to have visitors at certain points! However, at some points during the 100 days I'll be EXTREMELY neutropenic (meaning, in case you haven't read previous posts, that I basically won't have any immune system), even more so than I was with the chemo. At those points, I'm going to be using online video chats a LOT! :)

- Once I'm done with my 100 days, as long as I don't relapse...I'm done for good!!!

Your prayers and support are what got me through my chemo, and now I'm going to need lots of prayer and support long as you aren't sick of me yet! :) Prayer for endurance here at home while I try and try to get stronger...for Mary, as my donor, that she has an easy experience and continues to be the brave little sister afraid of nothing...for the radiation and chemo, that I have as easy of an experience as I possibly can, although it won't be "easy" in general...for my time in the hospital, that I regain strength quickly and respond to the transplant well...for the 100 days, that they pass quickly and that I don't get sick or have any complications that hold me back...that I won't relapse after transplant...for my family, that they adjust easily to the changes that will take place for all of them during my transplant and 100 days...and for all of my friends, family, and strangers who have been more supportive than I could have ever asked for!!!

On a different note, I'm SO excited to FINALLY be tapering off of the strong medications I've been on and slowly finding it easier and easier to do little things I had so much trouble with before: reading, writing, typing, etc. I'm still working on all of those things for sure, but hopefully I'll be back to normal sometime soon, at least with reading and writing!!

Lastly, one more request: PLEASE text me or call or text my parents if you'd like to drop by or visit!!! I still have to take LOTS of precautions while I'm home, and both my family and I are still learning to adjust. Having drop-by visits is really difficult because of how much I'm sleeping and all that my family has going on, especially with all of my testing back at Loyola; so PLEASE contact one of us about visiting instead of making a surprise visit! As much as I'd usually appreciate being surprised by a friend, right now it's much easier for all of us to know who's coming on what day. I honestly haven't felt up to having visitors in probably months, and I haven't had anyone visit me at home yet because of all of the appointments I've already had and trying to fit in some family time. If I don't get to see all the people I want to see while I'm here at home, it's just because tests and appointments for me, and family time for all of us, is more important right now than having visitors. Keep in mind that there's always Skype video chats when I'm awake and other options for staying in touch! It's been kind of weird for me to adjust from college, where I'd see friends every day, to this life, where I barely see friends at all. I hate it. :( However, my health has to come first, and my family second, so I'm doing my best to balance everything. Hopefully by next fall I'll be back at school again, hugging all of my friends and not having to worry about stupid face masks and hand sanitizer! :P

Love you all and thank you, for the millionth time, for your unending love and support. You're all helping me get through this, whether you know it or not!!! :)


1 comment:

  1. You are rocking this, Sarah! I wish we could all bear a little of this burden for you.