Beyond Grateful!

To everyone who took some, or A LOT, of time out of their day to share, educate, and flat out bomb the internet with #teamkrissy, I want to say a BIG thank you! I tried my best to keep up with the comments and shares, but it was really really hard!

I took on the role of the Teamkrissy.com's website & social media manager when we first found out that Krissy had MDS. I have no experience in managing a website or PR & marketing. So I was pretty clueless about what I was doing when we first started. I'm still not an expert at dealing with and responding to all of this media attention. However, over the last 10 years I've definitely become a passionate advocate about bone marrow transplants and registration, using these social media connections and platforms. The team probably can all agree it has not been easy, chasing down people all day at registration events, dealing with apathy because people don't want to take the time to understand the situation of someone who is sick and possibly dying of bone marrow failure, all because of their own fears. When it is so close to your heart and a loved one is the one you are desperately doing all of this for, you can bet it's frustrating! It was a mission of mine to break down the myths that scared so many people away from us during these events. This website and social media have been the best tools for telling Krissy's story and answering many questions people have about bone marrow registration and donation... Today was probably overload for readers and Facebook followers. I'm sorry, but I'm just super motivated, and have never been more pushy and relentless about anything else in my life. Even more so, I've been rejuvenated with the attention we've gotten and Krissy's rush to get a transplant.

I was lucky enough to get to read every single post, comment, and e-mail that we got and it's been overwhelming in a good way! Krissy has a ton of support and has touched so many people that are sending her hope, love, prayers, and good vibes from all corners of the world!

We are doing good things each day that we share Krissy's story and inform people about this HUGE need for more registered donors in the National Marrow Registry. I can't help but think that we have probably saved quite a few lives through the work we've done so far, and who knows how many more we can save in the future, from the work we've done in just this week!! The response that we've gotten from news stations, celebrities, and other websites and organizations has been so awesome and affirms that we can make a difference and we are being noticed, especially when millions of other people are at least viewing what we have to say.

I'm happy enough knowing we have, at the very least, planted a seed. People can start by thinking about Krissy, and then maybe someday with the right amount of exposure and our relentless twittering and post sharing they will see that they are needed in the bone marrow registry, and that they can make a difference too!

Thank you again for your support, love, and happy thoughts. We'll need as much as we can get over the next year as Krissy faces her transplant and recovery. I will keep you updated and hope that you can continue to think about Krissy and her family, as well as continue to spread the word that this is not over yet and many more patients need help and support from us!

Registration Promo Code for Team Krissy

Hi Everyone! Our lovely friends over at A3M have reactivated a promo code for us so that you can register online with the Be the Match Registry. If you haven't registered, or know someone who is between the ages of 18 and 44 and hasn't registered, use this link and get yourselves registered to be bone marrow donors!

https://join.bethematch.org/teamkrissy

Remember, registering is EASY and only takes a cheek swab and some forms! The process of finding a match is so much more difficult and if you could be the one person that could save another person's life, then why would you hesitate? Register today and be a life saver!

A Letter from Krissy's Aunt: Visit to City of Hope

Hi Friends & Family,

I don't know if many of you know but Krissy was advised a month ago that she may need her bone marrow transplant very soon as her bone marrow is failing to produce.  The last few weeks have been difficult and she has undergone another bone marrow biopsy and yesterday we met with her doctor at the City of Hope for the game plan.

Krissy's hemoglobin, neutrophils and platelets are extremely low so the urgency for her to have a bone marrow transplant soon is the next step.  She and Mark (her dad) were HLA typed yesterday and Krissy will be run in the bone marrow registry early next week.  Back several years there was a 9 out of 10 match, which if nothing better shows up, will be our best bet.  COH will have a panel of doctors discuss the best options for Krissy in the next few weeks and will then reach out to the donor that best suits her.  If that donor is willing to proceed, they will be scheduled for testing which will take another few weeks if the donor's schedule is able to accommodate the timing.  The earliest the transplant may proceed is the beginning of September, but most likely it will take place the beginning of October.  If there is not a viable donor from the registry, then her dad will be the haploidentical donor as a partial match for her.

She will undergo intense chemo for 5 days followed by the bone marrow transfusion all at the COH.  Her stay is estimated at 7 weeks if there are no reactions or rejections, then another 6 months of careful watching at home for signs of rejection.  Of course, visitation will be extremely limited at the COH but we can set up a schedule for those who wish to visit, only 1 or 2 at a time and depending on her condition.  

We ask that you all keep Krissy in your prayers, a small miracle would be nice, but she is a strong, willful, independent woman who I KNOW will beat this and live a long and happy life.  She is ready for this fight and wants to put it behind her as quickly as possible, so she can resume one of her favorite things, a nice glass of WINE!  Once she's cured I hope everyone sends her a nice bottle to celebrate!

I want to thank everyone who has been on this 10 year journey with us, now it's show time and Krissy will come through this ordeal with all of your support, love and prayers.

 

With love and gratitude,

Patti

Together we can make it hapa'n!

HERE'S THE REGISTRATION LINK AGAIN!

REGISTER TODAY at BETHEMATCH.ORG

Update on Krissy's Health

To our dear friends and family - we are updating today, because we unfortunately received some concerning news. During the almost decade long search for Krissy's match, we always had it in the back of our minds that this would come, but Krissy's most recent blood work and bone marrow biopsy showed her RBC, WBC, Platelets and Neutrophils are at levels so low she will need to act very soon. She is now in the process of actively preparing for a bone marrow transplant, hopefully by sometime in the fall. We are not 100% sure of the match possibilities yet, and there are some options to take in consideration, but the good news is there were no signs of extra blasts, which means it hasn't progressed into Leukemia.

Please keep Krissy and her family in your thoughts and prayers as she goes through the process of preparing for her bone marrow transplant. Krissy is staying positive and in good spirits, but can use as much encouragement and prayer from her team as she can! Please feel free to email us or comment, and as always,  we ask you to please continue to spread the word and get more people registered to be marrow donors! Now more than ever, we have an urgent need to find Krissy's match. If you aren't registered, you can register here! Share the link! You can also contact us if you want more information! I'm happy to answer whatever questions you have! 

Krissy is a fighter! She is ready to get through this and she is so thankful for all of the love and support from all of her team. Thank you!

Together we can make it hapa'n!

Here's the registration link again!

REGISTER TODAY at BETHEMATCH.ORG

We're Back!!

Hi everyone!! It's been awhile since we have updated the TK website.  It has been almost a decade long search for Krissy's match and of course life must go on. We've really focused on living life the past few years and our involvement in the cause has lessened as a result.  Hopefully we can build the momentum up again and find her a perfect 10 out of 10 match! 

I have been working hard on a new design to the site with the help of my sister, the graphic designer. Hopefully this new and improved site will be easier to navigate and easier for me to manage. Stay tuned, I have a few more things to finalize, graphics need to be tweaked, and we need Krissy's stamp of approval and we will be up and running again. In the meantime check for updates on our Team Krissy Facebook page:

https://www.facebook.com/FindKrissysMatch/

Show us some love and share this beauty to all of your friends and family once it's finally updated!  Let's all come together again and work on finding Krissy her perfect match! This could be be the year! :)

Thanks to everyone for your love and support. Krissy and the rest of the team really appreciate how everyone answers to the call when we get together for this cause.