Meet my Genetic Twin ;)

Thomas and I had a wonderful time while he was here in the U.S. My 3 year post transplant appointment went great and life is going on.  It's been a long journey but I keep setting goals and reaching them.

Here are some pictures from Thomas' trip to the U.S.  I'm pretty sure we did everything there is to do in the Dallas/Ft. Worth area that there is to do!  We packed a lot into just a short time, but it was so amazing for me and I hope the same for him.  I know he never expected all this after simply signing up to be a life saving donor, but what an awesome experience it's been!

 At Kiss FM

 Taco Diner

 Ryan wanted to say a few words ;)

 ....and so did Rachel

We had to eat Texas BBQ!

 And see the Mavericks play! (Kjenn had dinner with us)

 We even managed to get ourselves into the high-five line at the game and high-five fellow German Dirk Nowitzki!

 Kim and Mom hanging with us!

The Twins ;)

Meeting the donor that saved my life.

This has been the most amazing week.  This journey started 3 years ago on 10/05/10.  I have endured a very scary diagnosis of Acute Lymphoblastic Leukemia (PH +) that carries a grim prognosis, 7 rounds of high dose chemotherapy, total body radiation, and a life saving bone marrow transplant from a complete stranger from across the world.  It was great writing an anonymous letter to my donor shortly after coming home from the hospital after the transplant and then receiving one back the week of Christmas. I remember seeing the letter on the table but the envelope said Baylor on it so you can imagine my surprise when I opened it and it wasn't a hospital bill but a letter from Thomas!  It was even better getting to share our personal information after 2 long years of waiting.  I emailed my donor immediately.  I had so many questions but first and foremost I was finally able to express my gratitude directly to him.  We have written each other on and off now for the last 8 months and we became instant friends. 

In honor of Martin Luther King day, a national radio station here in the U.S. has a contest for the month of January called "I have a dream."  People from all over submit their biggest dreams in hopes of being chosen to have that dream fulfilled by the popular morning show.  Unbeknownst to me, my cousin Amy selflessly submitted a very touching letter to the radio station for this contest.  She explained to them in 100 words or less that I had been diagnosed with leukemia and that I am alive and well today because of a complete stranger who joined the bone marrow registry and donated for me.  It was her dream that my dream of meeting him in person one day would be fulfilled.  

Last Thursday, I received a phone call from the radio station and they told me they would like to ask me some questions about my leukemia and put me on hold.  I could hear the Kidd Kraddick in the morning show playing while I was on hold and I started to wonder what was going on.  Next thing I know, I was talking to Kellie Rasberry J-Si, Big Al Mack and Jenna!!  At first Kellie was just asking me questions about my diagnosis etc.  Then they all started asking me questions about my donor and if I knew him or had ever spoken to him on the phone.  I told them no, we had never spoken on the phone, that we had only communicated by email.  Then out of nowhere Kellie said, "well, guess what?  Say hello to Thomas!"  I honestly thought she was kidding, I even asked her if this was a joke!  Then I heard Thomas say hello and I was absolutely speechless.  I could barely get any words out.  I was caught so off guard!  I was finally able to tell Thomas what I have said to him via email a thousand times.  I thought this was the best day ever....until Kellie proceeded to tell us that she wanted to fulfill Amy's dream of Thomas and I meeting in person and they would be flying him here from Germany to Dallas for us to meet in person live on the Kidd Kraddick in the morning show!!  What!!!!  This is so CrAzY!  I'm still in disbelief!  I'm overwhelmed with excitement. So, it looks like Thomas will be coming at the end of March, which is awesome because March 16th will be 3 years post transplant!  

I cannot thank Amy enough for the best surprise of my life and for writing such a touching letter.  Thank you Thomas (Twin) ;)  for being on this crazy journey with me and being so open to all of this when you didn't have to be. Thank you mom, Kim, and Jenn for your continued love and support while we continue on this path set before us.  

Still Fighting, 
Katie 

Listen to the radio interview below!
http://www.kiddnation.com/i-have-a-dream-to-meet-my-match-audio/

Results

This has been such a busy summer! After New York I went to Dallas for 5 days to celebrate my grandma's 92nd birthday and to have the repeat bone marrow biopsy at Baylor, then my sister decided we needed another little vacation and she drove down to Austin from Ft. Worth and from here we all drove to San Antonio for two days of Fiesta Texas and their water park! I need a vacation from my vacations! Good news! My doctor actually called to tell me that my bone marrow came back clear with no signs of leukemia and the Philadelphia chromosome analysis is also Negative! What a huge relief! Yesterday we celebrated Ryan's 8th birthday at a trampoline park and now I need to start planning Rachel's party for next month! The fun never ends around here. I'm so thankful for the energy to do all the things I am able to do. And thanks again to my German "Twin" for giving me this extra time here, I don't think there will ever be enough "Thank yous" said to him. ;) Still fighting, Katie

My whole life <3  4th of July ⬆

Birthday dinner in San Antonio at The Magic Time Machine :) 

Water Park/Fiesta Texas 2013

Pizza Party at the hotel

My mom and oldest sister Jenn (expecting twins in October!) drove 3 hours to attend Ryan's party! So blessed and thankful for my family! 

8 years old! 

Positive Philadelphia Chromosome Results

Well, I said I would blog if something happened. :) It's not a big big deal but it's still not fun having to worry for the next week. Worrying won't add one minute to your life by the way. ;) I had a bone marrow biopsy May 10th. I have always received results 3 days after these biopsies, always. Well 3 days came and went so like any good nagging patient I emailed my doctor's nurse to see if she had them yet. I did not receive a response in a reasonable amount of time so I called and left her a message. A few more days and still nothing so I emailed again and this time she let me know the results were still pending in the lab and she would let me know as soon as they came in. Long story short, here we are 7 weeks later. I saw my doctor here in Austin yesterday for a routine lab and appointment and he asked me how my results came out from the biopsy. I laughed and told him that I was hoping he was going to tell me what those results were. So, he looked in the system and there was nothing. He is such a good doctor and really advocates for his patients if something seems off. He called my other doctor as he has done so many times before and left him a message. He told me that no matter what, he would call me and let me know what they discuss but it may be the next day. That was fine with me, haha I've already waited 7 weeks! He called me yesterday evening. He could have waited until business hours today, but he didn't. He called and let me know that the bcr/abl (PH chromosome) is present in a very small amount and that my doctor had told his nurse to call me with these results weeks ago! Who does that?! How do you forget to tell a patient something like that? Whatever the reason, being upset will not change the situation so I'm not going to waste energy being mad. Well, that's not entirely true, I allowed myself to be angry for a few hours yesterday. ;) So, I was given two options. Repeat the biopsy to see if it is a false-positive or start on a suppression medication (oral chemotherapy) and see if that puts the bcr/abl back to negative in about 6 weeks. I choose door number one! I do NOT want to be on oral chemo! I hate all the side effects and quite frankly, simply do not want any foreign chemicals in my body that just don't belong there. I get enough chemicals through the food I eat in this country. :) So, a repeat bone marrow biopsy it is. It will be on Tuesday and I can almost guarantee 100% that I will have those results no later than Friday by noon! ;) I was already planning on going to Dallas this weekend for my grandmother's 92nd birthday so I will just be extending my stay for a few more days! I'm perfectly okay with this...It's SuMmEr!! I think while we are there we may visit Six Flags and NRH20 (a water park)! Life doesn't stop for these small bumps in the road. I've learned to try and stay calm with these less than pleasant results, because I've been down this road before and it always turns out okay. A little scary at times, but always okay. So today, it's business as usual, cooking dinner, watching movies, making memories for a life time. Life is still good. Still fighting, Katie

Pictures from New York!

Finally met Lorenzo! 

We had such a great trip.  We saw and did everything we wanted to and more.  I can't wait to go back one day!  My hair has come in so dark after treatment, but it's growing on me. 

Finally going to New York!

In 11 days, I'm finally going to New York! I will get to explore the city and finally meet LoReNzo! yay! It will be a nice break after a full year of a combination of working, volunteering, running Ryan and Rachel all over the place, and really just non-stop chaos! I am SO ready for a vacation for myself. Ryan and Rachel keep telling me it's not fair they can't go with me; they sure know how to pull at my heart strings! As much as I love them, I need and deserve this. It's weird writing this blog and not talk about cancer. There is not much more to say. I don't take any medications so there are no side effects to deal with. I'm in 100% remission, I only see the doctor once a month or even every other month really, I do still get some cramps in my legs and hands but nothing I can't deal with at this point. I used to constantly worry about relapse and those thoughts are slowly subsiding the busier I get with moving on with life. I think connecting with my donor has also really helped me with the closure of all this. I know that sounds very strange but it has. It helps that he's so open, kind and willing to share with me. Aside from being so sick I probably never would have started a blog! If I were to continue to write, it would be all about these precious kids and our crazy busy life and that was never really the intention of all this. It was a means to keep everyone up to date in one place about my illness. I guess I will only update it every 6 months to a year now or if something significant happens. I haven't mentioned this before but through my blog I have had at least 10 if not more people email me (just in the last 6 months I'd say) letting me know of their exact same diagnosis as me and want to talk or just more info. There were like 3 people in one month which was shocking to me because I only found one person when I was diagnosed and still didn't know anyone else until a year later. I'm so so happy to talk to anyone who finds this and is diagnosed with PH+ ALL. I'm happy to answer any questions you may have or simply just give you hope as I have been through the adult regimen (HYPER C-VAD) and at this point am 2 years post stem-cell transplant from a MUD (matched unrelated donor). Cheers. :) Still Fighting, Katie

06/06/13

Rachel, what do you want to do when you grow up?  

I didn't even know they did this at school one day.  It was earlier this year in the middle of first grade!  I'm glad this is on her radar!  Love you Rachel!