Tuesday, June 28

THE LLS MAN OF THE YEAR IS....

The Gala was such an amazing night for us! Before the ceremony even began, Scott and I were having such a blast. So many friends and family members came to support him, it was so much fun seeing people from all different parts of life come together and support Scott.  We listened to Candice and Bryce speak and thank the audience for helping find a cure for their cancer (tear jerker). We listened to parents who have lost their children to blood cancer (more tears). And we listened to those who, including Scott, have such passionate reasons to campaign for this fundraiser.  It's a charity gala - so there was LOTS of listening during dinner ;).

At the end of the program, the moment finally came. All of the candidates were asked to go up on stage. And my stomach was full of butterflies. We had an idea of how much Scott had raised, but we also knew that there were a lot of auction items and raffle items that could be game changers for some candidates during the actual gala. Then again we also had zero idea of how much the other candidates had raised. The pressure was on. There was a lot of waiting as final numbers were tallied. And a lot of anxiety rising at our table.

They first announced the runner up - Mike Hyde with $35,000. I gasped. Grabbed my sister's arm. And filled with so much pride I whispered to our table, "He did it." I knew going into the night Scott was near $80,000.  A number we had kept silent to ourselves.  After all, it is a competition!

Then they announced the winner, Scott Bernstein with $91,000. Holy Crap. The audience jumped to their feet with applause. Our table, Scott's team, Holding on to Hope, walked up to the stage. There were a lot of joyful tears and hugging all over that stage. Scott was crowned and we were all in awe. Ninety-one THOUSAND dollars. Scott broke the LLS's Gateway Chapter record for Man of the Year that night. It was truly an unforgettable experience.

Side note - after a double check with accounting, he actually raised over $93,000 :)

In his acceptance speech, Scott reminded us that although it's his name as the winner, it's not really about him. It was the hundreds of people who donated to his campaign - to this very important cause. Today, friends and family come up and congratulate him and thank him for what he did. And he says, no, thank you. Because the people who believe in finding a cure for my cancer and who donated to Scott's campaign are the ones who deserve the thanking. So thank you, from the bottom of our hearts, thank you in believing in Scott, supporting our family, and giving me hope for a long, healthy life.








Monday, April 25

LLS's Man of the Year



Last year, Scott mentioned to me that he felt ready to add something new to his resume.  It had only been a few months since he switched companies so I found this interesting.  I listened as he explained how he wanted more – not for him or for us, but to do more.  To help others.  He began putting his feelers out to join a board or find a charity that he found rewarding.  It’s funny how fate works – it was right then when the Leukemia and Lymphoma Society’s Man of the Year fundraising campaign fell into his lap. 

He was sold immediately.  Raise some money for a charity that was near and dear to our hearts? Done.  He called me excited with his news, only to find hesitation on my end of the line.  “Are you familiar with this campaign? Have you been informed of the amount of time and effort this campaign takes from a candidate? And the amount of money one is expected to raise?!” I knew more about the history of this fundraising campaign than he did, and sat him down that night to knock the idea of a few thousand dollars out of his head and get him to understand this was a huge commitment – we’re talking about raising tens of thousands of dollars over a few months span.  We have a toddler, a new dog, and hopes for more kids in the future – is this really something that we can take on right now? It was a question that was necessary for us to ask ourselves, but one that we were able to answer in a heartbeat.  Absolutely. 

Scott is running to be LLS’s Man of the Year. He is competing with 7 other men in the Gateway Chapter of LLS. The winner – who ever raises the most amount of money in ten weeks, wins the crown. Literally. I kind of laugh sometimes, how brilliant was LLS to come up with the idea to get men competing against one another while raising money for cancer research?! Definitely a smart woman out there ;).

Scott has built a team with a few friends and family members to help support him during these ten weeks. I have taken on the role of campaign manager and now spend many of Charlotte’s naps on the computer planning, organizing, and trying to keep up with Scott and all of the donations he has coming in.

This campaign is focused on two children, this year they are Bryce and Candice. They are both survivors. I’ll attach their stories at the end, but fair warning, reading about such young children battling cancer surly pulls at the heart strings. LLS donates $.75 for every dollar raised to patient support, family support, and of course cancer research. In charity world, that is fantastic. The goal of this campaign – to find a cure for blood cancers.  While we are inspired to raise money in honor of these children and for the thousands of families affected by blood cancer, we are also doing it for a completely selfish reason – me.

Back to that night when Scott and I asked ourselves if we were ready to jump on a 10 week campaign filled with planning, meetings, events, and crazy time commitments, we knew we didn’t have a choice. It was the elephant in the room that we never talk about. It is the scariest and most real elephant that follows me around every day.  It is the elephant that won’t go away until there is a cure for my cancer.

My cancer has been stubborn over the last decade, proving that it is aggressive. My relapse in 2011 was stage four without any warning signs. It was stage four without a treatment available. It was stage four that took almost two years of chemotherapy to beat. My oncologist put me on a clinical trial chemo pill to hold me over for eight months until the drug Brentuximab was FDA approved. And I thank my lucky stars every day that the drug became available. Because that brand new FDA approved chemo saved my life and beat my stage four relapse. Without donations to fund cancer research, that chemo would not have been available to me nor the thousands of lives it has saved. 

As for the elephant in the room, the elephant is the fact that according to statistics, my cancer will likely relapse one day. Maybe ten years from now. Maybe ten days from now. Maybe never. My oncologist spends my check-up appointments playing with Charlotte and reminding me of the sweet fact that I have not relapsed like that majority of patients whose lives were spared years ago with Brentuximab. Scott and I are not they type who travel the world and explore the unknown like we're living on a clock. To us, living our lives to the fullest include family trips to the park, evenings with friends, and exploring the world through our daughter's eyes. Cancer has affected us in so many ways, this opportunity to help others live their dream life is now our priority. 

Scott and I are passionate about this fundraising campaign for the thousands we can help and of course for such incredible selfish reasons – we want to grow old together.  We ask that if you have not considered a charity or organization to give back to, we truly believe in LLS and would be honored if you would consider a donation to Scott’s campaign.

One thing Scott keeps saying to me, although winning this campaign would truly be all the feels, what’s more important is the actual money raised.  In just a little over a week the Grand Finale Gala will be held at the Chase Park Plaza on May 5th.  That is the last day to donate and the winner will be announced and crowned.  We couldn’t be more excited to be a part of this fun and incredibly rewarding experience.

To donate or to purchase tickets to the gala, please visit Scott’s fundraising website


From the bottom of our hearts we cannot say thank you enough for your generosity to LLS and to our future as a family.



Bryce's Story

On February 28, 2015, I heard the worst words a mother can hear: “You son has cancer.” What followed those words was a whirlwind of emotions. All of a sudden, my seven year old boy seemed much more fragile than he ever used to be. Bryce was immediately admitted to the hospital for further testing, surgery, and treatment. He ultimately was diagnosed with Large B Cell Lymphoma. While this was truly the scariest time of our lives, we did what we do best: we all rallied around Bryce and continued to live in our positive and faithful way. Were there hard days? Absolutely. There were days in which it seemed almost impossible to keep moving. But we chose not to focus on the bad and to remain positive about the outcome. After what seemed like a very long five months of inpatient treatments and sick visits, I heard my new favorite words: “Bryce is in remission.” We are so grateful for the support that we received for Bryce during the most difficult time in his life to date. I honestly don’t know how we would have made it through without that support. Not only do I speak for myself, I know I speak for other parents whose children have been diagnosed with cancer when I say “Thank you”. Thank you for supporting our children and an organization that is helping to find a cure. Thank you for making someday today for my son!

 With heartfelt appreciation, Bryce’s mom, Regina


 Candice’s Story

This little girl is Candice Crume. She is a child of a military family. Daddy is active duty and mommy served 12 years in the US Navy. On 17 May 2013, shortly after she turned three, she was diagnosed with B Cell Acute Lymphoblastic Leukemia. Her diagnosis came as a surprise to the entire family. The day we took her to the ER, she was in repertory distress, her skin was pale (yellow), she had been acting really unusual for more than a week. From the beginning of this roller coaster she has proven she can take on anything. From the ER visit, finding out about her enlarged heart and liver, failing kidneys, her getting transported to St. Louis via Helicopter because her little body was shutting down, spending a few days in the PICU but ultimately finding out what was causing this all, and her starting her treatment plan it has been a very rocky road. Every day we are amazed what a strong little girl she is. She has taken to treatment very well. Even with the set back of a blood clot in her leg, relearning how to walk, and the isolation of being at home amongst many other factors she has true strength. Nothing can break her fun loving, grateful, affectionate, adventurous spirit! Want to see true strength, look into the heart of a child that is in the fight of their life. She has since finished treatment in July 2015. She is an inspiration and has a true heart of gold!

Monday, June 9

One Year Later

As a cancer patient, you lose control of many things in life.  And by many things what I really mean is, the big things.  Your appearance, your day calendar, your independence.  (And for the lucky few even control over your bowels.)  Did you wash your jeans before you wore them again?  Did you remember to pick up a new toothbrush at Target?  Who cares, you have new, more critical things worrying your drained mind right now; big, life changing things.  Will I have enough energy to make it through a week of work?  How about just a day of work?  Will I be able to make this month's rent?  Will I still be here to attend that wedding next spring?  And you become jealous of your friends and their "worries".  They are stressed about finding time to get a mani in this week or if they should go to one or two ball games before the current series is up.  You just want to be normal again.  And get caught up in the life of only having to worry about the small things... like gaining weight from too much ice cream, not chemo.

It's been a year since I last blogged.  I've received emails over the past year (from people I've don't know) asking for updates and about how life as a new mom.  I apologize for not getting back to everyone.  And as I reflect on why I have not been able to get back to those emails I am starting to cry.  But I'm crying the most happy tears I've cried in a long time.  I haven't been on my blog or email much for the past year because I have been caught up in all of those little things in life.  And it has been the most amazing feeling in the entire world.

I'm a mom now.  And it's incredible.  Don't get me wrong, it's a hell of a lot of work!  And I'm pretty sleepy most days.  But somehow seeing that smile every morning erases those wee hour pacifier hunts and midnight blowout baths.  Charlotte just turned seven months last week.  She the biggest ball of happiness you will ever meet.  She looks nothing like me.  Maybe, sometimes, sorta like Scott?  But one thing is for sure; she has my mom's beautiful, blue eyes.

As for my health, all is looking great.  I had my annual PET and CT scans in December (and I seriously thought I wrote an update post about that?!  Again, my apologies) and all is still clear.  After giving birth only a few weeks prior the scans, the results were honestly the last thing on my mind.  Being attached to a tiny human did not give me much time to think about things other than feeding times, trying to remember the last time I showered, and who I could talk into holding a baby so I could squeeze in some shut eye (luckily that one wasn't hard at all).  So being preoccupied was wonderful, because there was no time to focus on those dreaded "what ifs".  I'm still seeing Dr. Bartlett every three months, although we suspect we are only seeing her so often still because she wants to see Charlotte, haha.  It's been fun showing off my baby to the nurses.  And getting into the story about how she truly is a miracle.  How much of a miracle is she really?  Well, I met with my fertility doctor (seriously, if you or someone you know is about to go through high doses of chemo or radiation, please look into him!!) for FUTURE plans (no, I'm not pregnant nor getting pregnant anytime in the near future!).  I did some testing and sure enough I only have one follicle in there.  I had to ask too, what's a follicle? It's a tiny sac that contains the pre-mature egg.  So that one follicle that is still in me is not a guarantee to even have an egg in it. In short, I am considered infertile.

I've posted our baby announcement that made for us by my sister.  I've also added some pics of our sweet chunker.  It's been an incredible year since my last post.  I feel guilty saying it out loud sometimes, but I feel safe here - my life is perfect.  I have everything I could ever want in life.  And more.  Scott is an incredible father and the best partner anyone could ever ask for.  He works hard so I can stay home with our baby and soak in every minute of her precious love.  I've sat at this blog for years crying my eyes out, wondering if I could ever have a healthy life, hoping for some sort of normalcy.  It feels pretty incredible to sit here today telling you that I have it all.  I have more happiness and joy than I could ever ask for.  But most importantly, I have my health.  It's finally my turn; I have it all.

Christmas, 1 month

Two months


Four months

Five months


Five months
Scott and Charlotte, six months

 
Me and Charlotte, six months

Sunday, June 23

My Miracle

I was diagnosed with Hodgkin's Lymphoma when I was 21.  I endured 8 months of treatment only to find out it did not work and I had a long road of treatment ahead of me.  Check out my entire treatment history if you're interested, or I can just give it to you here quick.

Just a couple months before my 22nd birthday I was going through some intense hospitalized chemo treatments as "maintenance" before I was hit with the high dose chemo and my stem-cell transplant.  I was moving my life out of college town and back into my dad's house, shopping for more pjs, and mentally preparing for living in and out of the hospital.  I was going to transplant classes at the hospital, learning what to expect during my hospitalizations and post treatment.  One thing that was lightly mentioned was infertility.  I hadn't thought too much about it, but when I began my research I suddenly learned that this high dose chemo was going to make me sterile.  At age 22.  Not okay. 

A friend's mother reached out to me and turned me to Dr. Silber. I met with Dr. Silber and his amazing team to learn that there were some fascinating advances in medicine that would still allow me to have children.  I had my eggs harvested as well as my ovarian tissue (he removed one of my ovaries.  It's remarkable, I did a tv interview about my story, learn all about it.)

Immediately after my transplant I could feel my body going through "the change."  Yup, I hit menopause at age 22.  After a few months I tested as post-menopausal.  The chemo had cleaned me out - I was officially sterile.  I was also in remission. 

Eight years later, age 30, I'm in love and recovering from my most recent relapse with cancer.  I'm 3 months out of treatment and in the beginning stage of feeling well again.  I'm getting my strength back, staying up later, expanding my diet, and starting to once again feel normal.  Then in February I was hit with a virus.  Nothing horrible, but I was having problems keeping food down and was constantly tired.  I was working out a lot, but didn't seem to be losing any weight.  I saw my oncologist and she ran a few tests, but everything came back negative.  She was a bit surprised I was still have chemo hangover side effects, but on paper I couldn't be healthier.  A few days after that appointment I was having dinner with girlfriends who all happen to be pregnant.  I can relate well to them because my chemo side effects were very similar to their pregnancy moans and groans.  But they started questioning me a bit more about this virus that seemed to be lingering around... and by the end of dinner they were convinced that my symptoms were due to pregnancy, not chemo.  I laughed in their faces... until one came back with a pregnancy test to shut me up.  I took it to humor them.  But then the joke was on me.  Positive.

WHAT?!  THERE IS NO FREAKING WAY I CAN BE PREGNANT!!  THIS IS IMPOSSIBLE!  I'M POST MENOPAUSAL!  I'M STERILE!  And then I became worried what other cancer I could have now that would result in a high HGC level ( high HGC is what makes a positive pregnancy test).  I met with my doc, did some more tests, and sure enough.... I'M PREGNANT!!!!!!!!!!!!!!!!

Holy crap, I'm pregnant.

It was for sure a shock at first.  After letting it settle, sharing everything with Scott, and reflecting on what a true miracle this really is, my shock quickly turned into pure joy.  My oncologist, OGBYN, and fertilitist were all in equal shock.  It's a miracle.  I'm going to have a baby.

I am now 5 months pregnant, and we are expecting a baby girl on November 11th.  Scott and I moved into a beautiful home and now live on Cloud 9.  I can't quite believe it myself sometimes; I have never been this happy in life.  And it all happened just months after chemo treatment.  Never in a million years did I ever imagine this happening.  The possibility of being pregnant never even crossed my mind.  But now that she's here, it's all that we want.  It's all we can talk about.  We've nested and now we're waiting.  Thanking each other, our families, and God for this true blessing in life. 

I have everything I ever wanted in life.  I survived cancer.  Again.  I am engaged to the love of my life.  And we are 4 months away from meeting our little angel, Charlotte Ruth.  And I'm going to be a mom.  A mom to a true miracle. 

Workin It

March 9, 2013

It feels good to feel good!  I joined the YMCA because I found this AWESOME program for cancer patients.  I have a personal trainer for 3 months for FREE because I had cancer!  I'm soooo excited to lose these 25 pounds I gained on chemo.  Check it out, if you or if anyone you know has/had cancer you're eligible! 

http://www.ymcastlouis.org/metropolitan-office/livestrong-ymca

It's about to get Personal Part III

February 9, 2013

The day after I wrote It's About to get Personal II everything changed.  And it got real personal.

I met Scott over a year ago through friends and I saw him out often.  We have the same friends, go to the same bars, and once summer hit he was a regular at our pool.  He's constantly making me laugh and I've never felt so comfortable around someone.  I wrote It's about to get Personal II on a Thursday; the next night I found myself out with Scott and halfway through the evening he kissed me.  That was 6 months ago and we have been inseparable ever since.

A lot has happened to me physically and mentally in the past 6 months.  I was go go go, party party party up until Labor Day.  My energy and momentum started slipping.  I was getting sicker and exhaustion was kicking in.  The chemo really began to take a toll on me.  But Scott didn't seem to notice, or if he did he didn't mind one bit.  He even admitted it was nice to get out of the bar and spend the evening on the couch.  Yup, coupledom hit us hard.  It was so easy with him.  He already knew my humongous secret as well as my way of dealing with it - pretending it's not there.  At my birthday when I got really sick and tried to push through he knew better and was the one who took me home.  After treatments he was waiting with arms open as I collapsed from exhaustion.  When I wasn't feeling well I never once had to ask him to do something for me; he had already offered.  The cancer doesn't push him away.  He was also the one in the doctor's room with me and Krissy when we got the final doctor's report that my post-treatment scans were clear.  Because it was important to him to be there for me.  The energy in my personality (because there was none in my body!) and my high spirits made him a believer in me. 

I'm still tired (although getting better at that!), I still wish I had a had the home and lifestyle I had expected by 30, but somehow all of that doesn't seem like as big of a deal. When I'm with him I forget about the worries and stresses cancer has left me with.  I'm reminded of the greatness cancer has created within me.  I'm wrapped up in the fun of life, living in the present and enjoying everyday as it comes.  It's exactly what I was doing before, just at a slower pace and with someone I love by my side.

The only scary part about dating someone seriously is now if something were to come back, I'd be dragging him into it as well.  He reminds me that's crazy talk and we're enjoying life one day at a time, not worrying about the future.  He's a good reminder to keep around :).


These Days

January 29, 2013

It's been one month since I saw my doc.  Three months since my last treatment.  Eleven months since I hit remission.  Yup, that means next month is my one year anniversary.  Wow, I can't believe it's been almost a year since that sweet, sweet day.

I've been happy and (for the most part) healthy this new year.  Despite some colds here and there, I've been noticing every week a bit more pep in my step.  I'm noticing I can stay up later and out longer without becoming exhausted.  I'm back in yoga.  I'm focusing on my diet trying to keep it as healthy as possible... although that totally goes to the crapper if I eat out.  I should start working on that.  I am VERY excited to be regaining feeling in my hands and feet.  They are being hit more often with Charlie horses than before which I find strange.  It's funny how Charlie horses use to take my breath away as I yelled in discomfort to the sky all while flopping around like a fish out of water until they went away.  These days I just roll my eyes and rub my foot until I can feel it again and move on.  We're talking multiple a day here.  It's the worst in my hand when I'm trying to write or cut with scissors and my hand freezes in that position.  It's like a rock that has to rubbed back to life.  But the MOST exciting part of all - I can once again successfully open string cheese!

Just like most tragedies in life, it's taken time to feel back to normal since treatment has ended.  Treatment created a different me.  I was very positive about life, but more emotional about the little things in life.  It feels good to be getting back to normal, mentally and physically.  I don't have to schedule my life around treatment anymore.  Or rely on my sister and friends to help me out.  I'm able to lay around on the couch because I WANT to, not because I'm drained from treatment and have to.  I'm starting to get a grasp on my finances and do not feel stressed about paying bills as often.  It's strange not having my day-to-day routine include cancer, but it's also incredibly wonderful.