Welcome Back!!! It’s been too long.

It’s been a very long time since I’ve posted. Too long. Maybe that’s a good thing; I’m not sure. But I haven’t forgotten why I started this blog. I will explain a little below exactly what I mean by it maybe being a good thing that I haven’t had much to post about personally, but there still is so much to share & to learn from out there so I will try to be diligent at getting more posts up.

I’m going to make a confession on here as to how and why this all started (besides the obvious & the family friend that inspired me joining Be The Match). I only really revealed this to one friend at the time & I even emailed myself this to prove it in case it came true. About 4 years ago or so I started to become obsessed with cancer. Weird, right? Who becomes obsessed with cancer? That’s so not normal. But I couldn’t help but be drawn into stories on the news and on social media about this beautiful little girl who had cancer and that inspirational young man who had cancer and the tragic story of some other strong & independent, single mother who may not be there to take care of her children. It seemed that everywhere I looked I saw cancer. I don’t mean that I’d see someone in a crowd with their pale skin & scarf on their head & bare eyebrows & “saw cancer.” I can honestly say I have never, ever, ever looked at someone fighting it and saw cancer. I see people; not cancer. But what I mean, is that everywhere I turned I’d be drawn into another story. I couldn’t stop myself from reading it or from watching the video. It was right around the time of My Sister’s Keeper coming out too. That one I couldn’t watch right away though. Took me months to actually sit down & watch it. So I read every story, every article, watched every video & learned as much as I could. But with each story I read & each video I watched & everything I learned about cancer as a whole, I couldn’t help but feel that this unhealthy obsession had meaning behind it. I felt that cancer was coming. I wasn’t sure if it would be me or someone around me but it was looming and always there. I began taking everything in for the purpose of knowledge that I may need sooner than later in my own life. I didn’t vocalize this because I figured everyone would think I was nuts. One friend whom I told encouraged me to think the opposite to not attract any negativity into my life. It wasn’t a negative thought process; it was one of trying to learn as much as I could because I felt I had to.

Around the same time is when I learned of a family friend, more like an extension of family really, who had leukemia as a child who was now in his young 30s with a wife & a son & a beautiful baby daughter on the way who had a recurrence as an adult. This drew me in to trying to figure out how I could help. How could I do something? What could I do? This is what led me to join Be The Match to become a bone marrow donor. If I could do nothing else monetarily or in the form of curing cancer, which I’m no doctor or researcher, I could at least to this.

I won’t rehash the story… as you can read it all in the rest of the blog… but that was not the end of my cancer obsession. I joined the registry and actually was a match to a patient within a year. This is SO RARE to match someone ever but right after signing up it just felt like this was meant to be. I even got so involved with this process & starting this blog that I ended up as a social media volunteer for Be The Match and was even flown out to Chicago to do a video interview for the packets & videos that current donors receive to educate themselves on the process they are about to take part in.

I asked my mother if she could come & she turned me down. I wasn’t sure why she wouldn’t want in on a free hotel & quick overnight in Chicago so I went alone. No worries though I entertained myself & it was an enjoyable trip. I remember calling her after the interview & saying it’s so hard to answer why I did it because I just felt like I had to. I couldn’t put that into words. After all, cancer hadn’t touched our lives really I told her. [Yes, my grandmother had cancer in the end, but that’s not what took my grandma & at that age the % chance is very high for some form of cancer. Yes, my uncle had cancer, but again that’s not what took him either. And in both these cases I didn’t see the cancer or the struggle so it didn’t touch me. The extended family that inspired me is my cousins’ cousin on the other side of their family. Andy & I had been at so many family parties together in our youth, but I hadn’t seen him in years & years & didn’t see or experience his struggle first hand. His story did pain me as I saw it through the cousins’ eyes & it devastated me to think about losing a cousin. So many parts of Andy’s story hit close to home but it still hadn’t reached out & touched my everyday life at that point.] My poor mother sat on the other end of the phone just agreeing with an “uh huh” when I said, “Do you know what I mean?” I don’t know what was going through her mind at that point because either the day before or that actual day she was finding out her biopsy results that she in fact had breast cancer. I returned home from that Chicago trip & stopped by their house with some of Chicago’s famous Garrett’s Popcorn for them & I’ll never forget that feeling when my mom sat me down at the dining room table. She said she had to tell me something & before she could get it out of her mouth, in my mind I knew she was about to tell me she has cancer. I just felt it. Everything I had done up to that day made sense to me. In a split second I knew. Sure enough she told me right then & there she had breast cancer. My heart sank, my stomach turned but in my brain it was like a light bulb went off. THIS is what I’ve been preparing for. THAT is why I needed all the knowledge I had attained over the last year. This was the cancer I felt coming.

Mom is okay now. A double mastectomy later & some hormone blockers for a few more years but she’s cancer free. But the reason I say that fewer posts from me is a good thing is because my “obsession” with cancer has diminished. I still read all the stories & watch all the videos because they are inspiring & heartwarming & heartbreaking at times too. I see the beautiful faces of the beautiful people who continue to touch my life through this obsession but I don’t see cancer like I did before. So, if my posts have gone down that is why. Sadly though, even though cancer has exited my immediate life, it still remains in this world & touches so many other lives & our efforts & awareness need to continue. I don’t need to learn so much any more but I still need to share what I have learned with others. So more posts again it is! I just wanted to explain myself before moving forward. Thanks! (end rant)

it’s still September… National Childhood Cancer Awareness Month

click to link to Jeff Gordon Children’s Foundation to learn more about how you can help

Better late than never…

It’s still September & September is National Childhood Cancer Awareness Month.

A few quick facts about childhood cancer to help paint a picture:

  • 36 children are diagnosed with cancer every day in the US alone.
  • 13,500 children under the age of 19 are diagnosed in the US each year.
  • the average age of diagnosis is 6 years old.
  • the average length of treatment for childhood cancer is 2 years (much longer than adult treatment courses).
  • the leading childhood cancer is ALL (Acute Lymphoblastic Leukemia).
  • Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.
  • childhood cancer claims more children’s lives than AIDS, asthma, diabetes, cystic fibrosis & other congenital anomalies combined
  • incidences of childhood cancer is increasing, but overall survivorship is increasing as well as research and treatments expand & improve.

Expanding research and improvements in treatments can only be made possible with help from people like you & I. There’s no need to limit this help to the month of September, we can help all year round. There are a variety of children’s cancer foundations and organizations that you can link to below. You can donate blood or platelets or register to donate bone marrow through the Be The Match registry. There are an overwhelming number of charitable organizations in your area as well that accept donations of socks, blankets, hats, books, games, etc. for children with cancer & families of these children. Do a Google search & see what you find.

Remember, often times these children are too young to realize what is happening around them but it is extremely difficult for their family & friends. Often, these beautiful little fighters are the ray of sunshine & hope that keep Mom & Dad smiling & get them through the day. So remember, not only can we support the kids, but their families too.

I recently had the chance to photograph a benefit for an amazing little girl, Fiona, & the Friends of Fiona Benefit will be a day that stays with me forever. I actually went to summer camp with Fiona’s mother when I was younger, but I learned of Fiona through a mutual friend on Facebook. Fiona is 3 years old & was diagnosed with ALL. Fiona was in the midst of chemo so due to her compromised immune system she wore a mask at her benefit. But don’t let that mask fool you… Fiona’s eyes say it all. Whether she was mesmerized by Captain Hook (one of her faves) or laughing while dancing with friends or smiling at Mom & Dad (Carrie & Matt) or puzzled trying to figure out who the lady is who keeps taking her pictures her eyes spoke volumes and it reminds you that Fiona is not just a cancer patient, she’s a vibrant, fun & loving 3 year old that would steal your heart with or without that hat & mask. When you look into the eyes of these children you don’t see cancer, you see innocence & hope.

But as I said, childhood cancer affects the whole family. While the benefit was successful, the medical bills are substantial & the sacrifice the family has made to care for Fiona leaves them still needing our help. So please consider visiting the Friends of Fiona page & donating to the Cross Family.

Links where you can learn about Childhood Cancer & how you can help:

Keeping in mind that ALL (Acute Lymphoblastic Leukemia) is the most diagnosed childhood cancer & September 2012 is also National Blood Cancer Awareness Month… a great way to help both causes is to join the Be The Match national bone marrow registry.

In recent months you may have read more about Be The Match as ABC news anchor Robin Roberts underwent a bone marrow transplant from her sister recently. She has partnered with Be The Match and the numbers of those on the registry has grown, but you could still join too. You may be the match for a 3 year old girl with ALL or a 52 year old man with CML or a 16 year old boy with a rare blood disorder. The point is you can only help save a life if you are on the registry. It takes a few minutes to swab your cheek so please consider joining by ordering a kit online today. You can also support Robin and Be The Match by visiting Be The Match’s shop & purchasing this bracelet.

So as September draws to a close & fall is here, please consider helping in the fight against childhood cancer & blood cancer. October will be pink with breast cancer awareness, but lets not forget about the children & keep the yellow ribbons on our arms & in our hearts year round.

It’s been a looooong time!

Hi all! It’s been a REALLY LONG TIME since I’ve posted. Not a lot has changed, yet so much has.

What I’ve been doing for the last 6+ months is a whole lot of work & school, flu, work, stomach flu, work & school, stomach flu again, more work & FINISHED SCHOOL! So most of the last 6 months has been spent on the couch glued to the laptop. I’m now a graduate again, second Bachelor’s (BS of Science in Accounting this time) degree over the course of 15 years.

“Lots of people spend 10 years in college.”
“I know. They’re called doctors.”

So needless to say I’ve been ignoring the blog.

Updates:
~Mom is doing great. One year cancer free just last week. All but one minor surgery left. Thanks for all the good juju.

~My friend Mandy is doing fantastic! She finished chemo in the fall and had her last Heparin treatment last week.

~I haven’t gotten any more updates on my recipient. It’s been almost 2 years. I think it was about 9-10 months out when I received word that she was doing well & was at 90% of her pre-illness health & that was great news. Going into this I was told her donor center does not allow any contact, even anonymous. My rep was surprised to hear this back when she asked.

As far as contact between donor and recipients after 1 year post transplant, communication is allowed. My rep told me since her donor center didn’t allow contact, she may not be aware that contact is allowed after 1 year. They told me after 1 year, either party can initiate contact & fill out a form with what contact info they wanted to share. This starts the process, the other party is informed & given the same release form before information is exchanged. My rep said my recipient may learn it is allowed by me starting the process. I chose not to start any contact. As much as I’m so curious to know how she’s doing & know that she’s well, I’m not eager to get in touch. I don’t want to look for contact in search of a “Thank you” because that is not why I donated. I can’t even explain how simple and without a thought the whole process was. I really felt as if donating was just the normal and natural thing to do. I wanted to help in some way, signed up & was matched almost right away. Of course I wanted to do it, that’s why I signed up. It’s just that simple. I know it is much more than that to my recipient. So if she ever wanted to get in touch I’d open it freely, I just don’t want to be the first one. Don’t know what else to say. I do, though, secretly scope out the Be The Match facebook page near the anniversary to see if anyone mentions their mom getting a transplant 1 year ago today, etc. in hopes for some type of validation that she is doing well. But I continue to pray in my own way & send good juju her way hoping she’s doing well today & getting ready to enjoy the summer with her family. I wish the same for all the recipients out there. In fact, my friend Emily just celebrated her 10 year BMT Birthday on April 11, she received a donation from her sister. That also happens to my birthday too. =)

Be The Match is doing incredibly well & have kicked off lots of new online campaigns and celebrated 25 years; 50,000 transplants & 10 million members. That’s awesome! Watch this video which is a timeline of bone marrow transplants and the Be The Match organization history. I learned a lot. Did you know, that on 9/11 when US air space was closed, there was one plane in the sky, which was an NMDP courier delivering life-saving bone marrow with a military escort? I had no idea! It’s on this video, worth the 4 minutes. Please watch it.


Be The Match has also launched a new social media app of sorts called My Social Strand. It puts some info together on your friends, which is spot on I might add, & gives you some fun images.

Notice the impact fact, that 8 of my facebook friends will likely be affected by leukemia in their lifetime. Sad, but true. In fact I can name 8 off the top of my head that already have.

This image even tells you how likely you are to survive an Alien Invasion… ha!

Don’t forget about the Be The Match Shop & check out their new items, sale items & 25th anniversary items. As always, PLEASE, join the Be The Match Registry & together, we can save lives.

Fall is here… changing leaves, changing lives.

It’s October, breast cancer awareness month & my pink updates this month are good ones. Mom is doing well. She didn’t need chemo and just underwent her last major surgery. Thanks for all your prayers & juju. Also, my friend Amanda has finished her chemo and her hair is growing back & looking damn sexy. We were at a lounge/bar a few weeks ago & I overheard a man make it a point to say that it takes a special girl to pull off a sexy short haircut like that & that she looked great. Made her smile… & me too! If she sends me a pic, I’ll share it with you.

I also have an amazing Be The Match blog to share with you from Tifaine, a classmate of hers who has gone through CML (which is what my recipient suffered from) and her experience with Be The Match. She makes good points that I hadn’t shared on here yet. To find a match for bone marrow, your best chances are within your family. If there is no related match, your next best match is a unrelated match within your same race. As of right now, only 10% of the registry is made up of minority registrants. So for African American, Latino, Asian and Pacific Islanders the chances of finding an unrelated match is even less. It is so important that we have more minorities on the registry so that those patients’ chances of finding a match are better. If you watch Extreme Makeover Home Edition, you’ll recall last week 6 year old Jonah needed to find a match & the show and the professional soccer league was working along with DKMS (who partners with Be The Match and they all access and share bone marrow registries) to sign up thousands more on the registry. They didn’t stress the minority issues on the show, which may have prompted more Latino viewers to sign up to find Jonah a match.

So please see Tifaine’s blog!

I also have a great blog to share from a fellow Be The Match SMART Volunteer Stacey as she shares Kia’s story.

So this fall while the leaves are changing, consider changing leaves AND changing lives. Join the Be The Match registry and commit to changing lives. & don’t forget to support Be The Match through their store at www.shopbethematch.org

Be The Match – You Can Save A Life!

Susan G Komen & Angels4Amanda… Happy 4th All!!!

I just wanted to thank everyone who donated to the Susan G Komen for the Cure ~ WNY in support of myself, my mom & our family as we walked together as Team “Therese’s Kittens” last month. I reached my personal goal & raised $550 and our Team total was $1,595. That’s amazing! It meant a lot to me and my mother. It was a great day with only a moment of rain right as we finished the “race” which served as a nice little cool down. You can still donate to the cause which supports local chapters, research and groups as well as the national Susan G Komen Foundation.

Therese's Kittens

Keep Amanda in your Thoughts

Don’t forget about my friend Amanda who continues to fight breast cancer and kick ass with true beauty and class. She hasn’t updated her amazing blog in a while, but I’m sure she will soon. She continues to need good vibes and juju so send some her way. There is a benefit for her coming up on August 7th from 2:00pm to 7:00pm at the Iron Worker’s Hall in West Seneca. Message me for ticket info or to buy an Angels4Amanda wristband.

Angels4Amanda Benefit Poster

Keep Matt in your Prayers

Also, continue to follow Matt’s story as he is past 30+ days from his bone marrow transplant. He has a new birthday now, 2 days a year to celebrate!


(you can follow Amanda and Matt’s stories in my favorites >>> )

Hope everyone has an amazing holiday weekend & an even better summer!!!

Happy Early BMT Birthday Matt… prayers please.

Through my advocacy with Be The Match and my SMART Volunteering for them, I learned of another blogger-sphere friend out there that is about to embark on his journey as he receives his bone marrow transplant this Friday, May 20th. In BMT world, this will be his new birthday. It is also Day Zero. So today, is Day -2 as he is 2 days away from zero & Sunday will be Day 2 as he is 2 days past zero. Matt is receiving his transplant from an anonymous donor from the Be The Match registry who is donating PBSCs as I did last August.

These next few days & weeks to come will be the tough for Matt. Right now he has endured two days of high dosage chemo & is in the middle of some intense full body radiation treatments to essentially kill his own bone marrow in preparation for his BMT to make room for his recipient’s bone marrow to move in & take up residency.

I’m asking that you say prayers for Matt & Becca (his girlfriend and narrator of his story on Caring Bridge) & his family as well. As I have learned through my friends Sue & Steve and am now learning on my own, this is a struggle and a journey for the family as well. So that being said… prayers, good vibes & good juju is in order for all of them this week as we approach Matt’s new Birthday & Day Zero.

(You can follow Matt’s Story in my favorite links to the right)

Shop Be The Match… NEW online store has been launched!

On May 11, 2011, Be The Match introduced a new online, public retail store that offers a wide range of Be The Match gear. Shop Be The Match features apparel, jewelry, hats, water bottles, blankets and more. 100% of the net proceeds from purchases at Shop Be The Match directly support the Be The Match mission to save lives through bone marrow transplants.

Every year, thousands of patients are diagnosed with diseases like leukemia and lymphoma and they depend on Be The Match to give them a second chance at life. Your purchase at Shop Be The Match helps support three crucial areas: adds more potential donors to the Be The Match Registry, provides financial assistance for patients with uninsured transplant costs, and funds research to help patients live longer, healthier lives.

Visit ShopBeTheMatch.org to shop and save lives today!

I personally LOVE the Chamilia bracelets and beads made just for Be The Match!

I ordered this beverage holder too for my iced cappucinos… I can’t wait for it to arrive!

Don’t forget to take the survey too. Since the Shop is new to Be The Match, they’re open to suggestions for new products and feedback on the online store.

going PINK!

While this blog remains about my bone marrow donation & my continuing support of NMDP & all that they do…. you will see it GOING PINK for a lil while.

First and foremost… on June 11th my family is getting together in support of my mom, Therese, to walk in the Susan G Komen Race for the Cure. Our team name is Therese’s Kittens (kinda like Charlie’s Angels but better). I would appreciate any support that you could give in my mom’s name to the Susan G Komen WNY Race for the Cure. 75% of the donations will remain in WNY and go to local education, research and services for survivors and families while 25% of the donations go to the national Susan G Komen For the Cure Grants Program to fund research. If you’d like to join the team please sign up and walk with Therese’s Kittens. THANK YOU!

me & Mom

& while I’m going pink… Mandy’s going RED! While going through my facebook feed, I noticed a lot of haircut pictures from an old summer camp friend. The first time I saw the pictures I thought nothing of it… the first haircut had a picture of Mandy’s ponytail being cut off and I assumed she was donating to locks of love but didn’t click past that. Then I saw a post from her entitled My Favorite Color is Red<<< breastcancerography in my feed and I had to read on.

Mandy is my age, 32 (or close to it, I know we graduated from high school in the same year), and currently undergoing chemotherapy as well as holistic remedies for breast cancer. I only learned of this via the wonderful world of facebook but I’m glad that I did because Mandy truly is an amazing young woman and her story is inspiring. Rather than shying away from the ugly truth about hair loss and chemo… Mandy has taken it head on, literally, with 12 hair cuts in 12 days. How perfect is that?!?!?! A chance at a new look, a new do every day. How often have you thought to yourself… I wish I could just chop it all off and go short… or I want to dye my hair red today… well she gets to do that every day and play with her every hair whim and wake up the next day and change it all over again. I think it is a perfect and empowering way of facing the issue and taking over some control over HOW you will go shorter and shorter until ultimately it’s time for the caps and wigs. And when Mandy’s beautiful hair starts growing back again, she will have had the chance to play around with all those looks and make bold choices that she may not have otherwise had the courage to do.

Mandy - 12 haircuts in 12 days

Please check out Mandy’s blog, it’s in my favorites, and also on facebook, her family has started a group called Angels4Amanda which provides a great outlet for family and friends alike to leave a few inspiring words for her and check in how she’s doing.

Sooooo much to update you on…

I have not posted in awhile & I have a lot to update you on… this will be a long one.

Part 1

Perhaps the most exciting news to share is that this blog turns out to be so much bigger than I ever expected. The folks at the NMDP’s Be The Match registry really took notice and I was invited to participate in a video shoot that will be used to make an online course for donors. How exciting is that?!?!?! They flew me out to Chicago and I was the only individual that they asked to participate outside the Chicago area. What an honor to be included this project.

When I arrived and met some of the amazing NMDP girls I was shocked at how excited they were to meet me. I even heard the words that I’m a “celebrity” within the organization for my blog. I was shocked! I really didn’t think that this blog was much more than my own thinking out loud. But at the same time, it was very gratifying to hear that, because I set out to do this blog to portray as detailed and accurate description of what I went through so that future donors knew what to expect when it was their turn to donate. (please rewind back to August to revisit my donation story) I tried to find something similar prior to my own donation and was not very successful in my search. I can tell you that all the literature they provide you as a donor and the information session you have with a NMDP physician does provide accurate info on what to expect, but it is just different hearing it first hand from another donor. This new online course for matched donors will provide that first person perspective for others and I’m thrilled that I am a part of this.

In addition… I got to go to CHICAGO!!! I absolutely love Chi town; it’s my favorite city and has the BEST food in the whole country in my opinion. I visited my favorite breakfast place ever… Bongo Room, got some of the famous Garrett’s popcorn and enjoyed my first deep dish pizza ever at Pizano’s. I ate well, did some sight seeing and got to see a friend while I was there.

at Millenium Park

my first deep dish pizza... yummm!

got to visit Miss Molly

Part 2

Remembering back to when I was desperately seeking some type of first hand story of what to expect with PBSC donation I posted a message on the Be The Match facebook wall asking if anyone out there had gone through that donation process and had any words to offer me. I got one message from a woman named Sue sharing that her husband’s sister was just starting her PBSC donation; donating her stem cells to her brother, Steve (Sue’s husband). She offered some of her sister-in-law’s experience and we started to correspond briefly from there.

Sue has her own very detailed blog about her husband’s story as he went through the process of receiving his sister’s cells and his journey. Right after I donated, I had no updates on my recipient’s health, and I was living vicariously through Steve’s story and Sue’s blog became a big part of my story. I’m not sure that Sue realized that, but as I read on in her story and her journey, not just Steve’s, I was constantly reminded of the strength and struggle that the whole family goes through. Their story touched me and you’ve seen me share some of their photos and asking for prayers and good juju, so this may ring a bell.

As time went on, I followed Sue and we became quick friends in the world of facebook… bazinga! Sue and her family live in Chicago and when I visited we had tried to plan a visit. Unfortunately we weren’t able to meet even though we were just blocks away from one another. While I was in Chicago, Steve had taken a turn for the worse and started to develop complications that ultimately led to the final chapter of Steve’s journey. It’s with a heavy heart that I share with you that Steve passed on March 18th. While he is at peace now, his family’s journey is not over. So I ask that you continue to keep Sue and her family in your prayers and send her some much needed juju. Godspeed Steve.

Sue & Steve

Please consider making a donation to the Reppen Family Children Educational Fund. Sue and Steve have two daughters in college and a son in 8th grade and their education remains a priority.

Part 3

I must say that throughout my interview with the NMDP and throughout my donation process I have never found the experience to be overly emotional for me. While a somewhat extended family member’s need for a match prompted me to ultimately join the registry, it was always something I wanted to do. I made the decision I wanted to do this; I signed up; I was called as a match and I donated. It was just that simple. I know in the grand scheme of things it’s bigger than that, but donating was simply not a big deal. It seemed natural and something that I was supposed to do and I never doubted or questioned my decision for a minute. I never was affected personally and immediately with cancer so I didn’t have the emotional tie to the decision that some others may have had.

Within days of closing that interview session cancer became a reality and has affected me very closely. The decision I made to donate bone marrow and the gift of life I was able to give my recipient suddenly has so much more meaning for me. While my patient was doing very well at my last update, her journey’s not over and I continue to think of her and her family and pray for them all. Remember that it is not just the patient but the whole family that is on this journey. While I blogged about my donation process, this newest story is not mine to share, but I ask that you extend your prayers (& juju) to my family as well.

Part 4

I hosted a Be The Match Donor Drive on March 18th and grew the registry by 7 members. I’m a little disappointed in the outcome of this donor drive, but that’s 7 more possible matches on the registry. This was part 1 of 2 donor drives that I’m hosting. The 2nd part is on Thursday April 21st that will be held at my office for IRS employees only, but this donor drive has received a HUGE response and I’m expecting 30-50 people to sign up at this drive. Woo Hoo!!! I shared a story with a newsletter at work and that has definitely boosted the exposure at my office.

Whew… that was a long one. Signing off now. Hope this finds you all well!