So.  Here we are.  I'm torn on how I feel about writing this post... on one hand, I feel it's necessary, as the last post was still hopeful.  And on the other, I don't want to share what happened because somehow, putting it into words makes it entirely too real.  But it is real... so here we go...

My mother lost her battle with Leukemia this past Sunday.  

I'm not sure what to write here, so bear with me... 

There were many times over the last year that I thought I might lose my mom... times in the ICU that I wouldn't wish on anyone, I remember thinking "this could be it".  But my mom always rallied.  Not as much each time, but she really tried hard to fight.  You would think with the year we've had, that I may on some level have been prepared for this outcome.  And in some ways, that may be true... but I was still holding on to hope, right up until last Thursday, when she started to struggle again with a recurring infection.  

Friday morning, she decided she was done.  And I don't blame her.  The indignities and abuses that she suffered at the hands of this disease and the resulting treatments are things that I won't soon be able to forget.  Her poor body and soul had been through so much, and this last infection really took its toll.  She didn't want to continue on with such poor quality of life, fighting to just to continue misery.  She was tired.  She put up a hell of a fight.

She was peaceful at the end.  I was with her when she passed, just me and her - the way it should have been.

Grief is an odd thing.  Some moments I'm fine, and able to focus on the task at hand, whatever it may be.  And some moments, I feel like the hole inside of me is so big it may just escape and swallow me whole.  There have been moments when I have been stuck on the floor, unable to figure out how to get up and get on.  If I stay busy and distracted, I'm ok... but if I stop moving for too long, it catches up.  And I guess that's as it should be.  A wise friend (ok, more than just one) told me to make sure I allow for that grief, but to also make sure I allow myself to live and laugh through this process.  I'm trying.

Today was my first run since before my mom started palliative care last week... it was hard.  I ran by the Northwestern marching band practice and for some reason, the start of their song almost brought me to my knees.  I expect it will be that way for a while.  

I've been going through every picture I can find in her house to try to replace the vision of her in the last year, with the vision of how she really was.  The disease was not pretty, and it did terrible things to her poor little body.  But boy, did she take it like a champ... most of the time, anyway.

My mom was the strongest, most fiercely independent, intelligent and quick witted woman I've known.  I hope that I have learned to be all of those things from her, and will continue to roll my eyes on her behalf at all things ridiculous.  

And I know that my mother was more than just that - she was a daughter and a friend to many.  I know others are feeling a loss as well, and I don't mean to cheapen or lessen the pain that others may have by monopolizing her passing, but she was everything to me.  She was my mom, yes, but she was also my best friend, my colleague, my co-conspirator, my confidant and my cheerleader.  And to echo the sentiment of my oldest and closest friend, I will never be that important to anyone else ever again.  And she was equally important to me.  Had I been able, I would have taken all of the pain, suffering, confusion and fight for her so that she could rest.  

I loved my mother with my whole heart... more than that, even.  I hope that she knew that.  I miss her more than I thought it would be possible.  

It occurred to me today that I hadn't posted an update lately - on my mom's health or my training progress.

Since my last post, my mom was in the ICU for about a week, back on the transplant floor for a few weeks, back to the ICU this past weekend and back on the transplant floor now.  Talk about a rough road.  She's holding her own, but it wears on us both.  Lately, she's had some good friends stopping by to keep her company during the weeks, which is good for everybody.  Right now, we just stay the course and hope that things start to improve soon.  the only direction to go is forward.

As for training, I'm starting to get my long runs back into double digits, so I'm on track with the training plan.  It's hard to balance training with life and work, but the mental discipline is part of the process.  My goal this year is to shave an hour (yes, that's ambitious) off of my time - I'm confident I can do it!

I have been slacking in the fundraising department as well - this year has certainly placed more demands on my time.  I have reached the minimum for my fundraising commitment, but that's no reason to stop now.  In fact, now that the minimum has been reached, more of your donations dollars go directly to the Leukemia and Lymphoma Society.

This organization is very dear to me, for reasons that should be pretty clear.  But in addition to my mother's fight with this terrible disease, Leukemia has touched my life, and the lives of others that I care for, more times than I really like to think about.  LLS is actively investing in cure research and funding new treatments to win the battle against blood cancers.  Please help me support that mission, so that more people can survive this fight.

Thank you in advance for your support and generosity.

I'm writing this post from my mom's room in the Intensive Care Unit.  Yes, we're back here again.  

When we started this process last fall, we knew that this would be a long process, but I'm not sure it's possible to fully understand the true length and difficulty of this process.

Last week, we came in for our normal clinic appointment, and my mom was mostly feeling ok...a little fatigued, some skin issues, but nothing that seemed too serious.  Her doctor decided to readmit her as a precaution, and I'm very glad that he did.  On Saturday night, I got a call from her nurse that my mom's blood pressure had dropped dangerously low and they weren't able to get it up, and her body temperature had also dropped down so low she was no longer registering on their thermometers.

She was transferred here, to the Intensive Care Unit and shortly thereafter started to have difficulty breathing.  At that point, the doctors made the determination that putting her on a ventilator was the best thing.  The working diagnosis at this point is sepsis, and she was going in to septic shock.  It's a good thing she was in the hospital, as I don't like to think about what would have happened if she had been home and had just gone to bed.

She has been on IV antibiotics and medications to manage the shock symptoms, and her vital signs have stabilized.  She is still on the ventilator, though, as there is now some concern about the time it is taking for her to wake up.  I am waiting for an update from the doctors about the CT scan results and hoping that she starts to become responsive.

On top of all this, they are still managing some Graft Versus Host disease from the transplant.  That is where the donor cells don't recognize her body as friendly territory and begin to attack her host cells.  The treatment for GVHD further suppresses the immune system, though, so in patients with sepsis, it is a difficult balance.

While I wait for answers, and hope that she improves quickly, I wanted to share some statistics with you:

1. The American Cancer Society's estimates for leukemia in the United States for 2014 are:

   • About 52,380 new cases of leukemia (all kinds) and 24,090 deaths from leukemia (all kinds)
   • About 18,860 new cases of acute myeloid leukemia (AML). Most will be in adults.
   • About 10,460 deaths from AML. Almost all will be in adults.

AML is what my mother is fighting.  And what the stem cell transplant is supposed to cure.  By donating to TNT/LLS, you are helping to fund cure research in the hopes of ending this miserable, devastating disease. 

In 2013, LLS spent $35.2 million in Leukemia research alone.  Please donate today to help us fight. 

As you probably know, last year I ran the Nike Women's Marathon in San Francisco as my first marathon to raise money for TNT/Leukemia and Lymphoma Society.  I raised over $3,000 in honor of my mother's fight with AML and to support other patients and family members like us.  I was set to make that my annual event, only to find out recently that Nike was discontinuing the full marathon for that event.  

Initially, I was very disappointed.  The entire experience of that race was amazing.  It was incredible... empowering, hopeful, exhausting, energizing... so many emotions all at once.  I think that because of the strong feelings and memories that I have associated with that race, it may be for the best that I can't repeat it.  It's possible that no other year would ever compare to that first one.  So, I am content to have had that amazing experience and let it reside in my heart and my memory.

But that means I need a race!

So, since I won't be going to San Francisco, I will instead be running my hometown race - the Chicago Marathon on October 12.  While this race won't have the same Team in Training presence as the Nike race, I hope to still raise substantial funds for TNT/LLS and have your support for this adventure.  Chicago will always be my city, so I am excited to run in this legendary race for such a great cause.

For those of you that have been following our journey, my mom is now home recovering... which we are very excited about!  She is almost 8 months out from her stem cell transplant, so we're hopeful that things will just keep getting better from here on out.  The doctors weren't kidding when they said this would be a very long and difficult process, but we are strong with the support from family and friends.  

I hope that you will consider donating to TNT/LLS through my race efforts - your money will go to fund research to find new treaments to end blood cancers. 

Sara