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! 

Significantly improved survival rates for stem cell transplant recipients

Significantly improved survival rates for stem cell transplant recipients

I love when these updated reports come out!  These are definitely not the statistics I was first quoted so this makes me smile!

Still Fighting,
Katie

Life is good.

Only 9 more days of school for Ryan and Rachel! I'm very excited for summer, probably more so than they are! First of all, I will be going to New York and that in itself is so exciting! I can check something off the bucket list and meet Lorenzo! I'm ready to relax from all the school activities and spend some quality time with the kids. I hope we can find lots of cool things to get into this summer! I'm very excited to report that in March, I was offered an opportunity to share my personal information with my bone marrow donor! They make you wait two years to share personal information with over seas donors and that two years was up in March. I filled out all the paperwork and hoped that he would do the same on his end. I think for me, it would have been okay either way because I know the choice people make to do something like this is a very personal one and some choose to remain anonymous. I knew that I had already had the opportunity to thank him via letter, but there is just something so different about actually knowing who you are thanking and being able to say it directly to them, even if it is just an email. I was elated when I received a call from Baylor last week letting me know that my donor had agreed to release his information to me. I couldn't believe that I would finally have the chance to say my thank you directly to him. From that phone call, I still had to wait a few days until the "official" paperwork came in but I had already waited two years so a few more days was no big deal. There have been so many times I've thought about exactly what I would say if ever given the chance, but I have to say that when that time did come, I was at a complete loss for words haha. I mean, what do you say? I was just genuinely and simply honored to say thank you to him and that has really brought this whole journey full circle for me. I feel so happy and so complete today. I have my two beautiful children who are happy and healthy, my family is still so supportive of me, my sister is going to have twins in October, my other sister is one of my best friends and now I have another name I can add to my prayer list each night. Life is so good. Thank you donor for making all this possible. Still Fighting, Katie

2 years post transplant

March 16, 2013 was two years post my life saving bone marrow transplant. Woo Hoo! Today, I'm feeling great. I still have a few things that pop up from time to time like muscle stiffness, severe heart burn, cramps in my hands and legs but all are manageable and I just kind of keep pressing forward. It has been so awesome being so involved in Ryan and Rachel's school year! I've been on all but one field trip, I eat lunch with them regularly, and I even joined the PTA. Ryan plays baseball and still does martial arts, and Rachel loves gymnastics! Aside from school and sports, I have taken every opportunity we've had to do fun little trips to make memories that will last hopefully a lifetime for them. Like I've said before, I never want to lay in a hospital bed again saying to myself "why didn't I do that when I had the chance." We have been camping at Dinosaur Valley State Park in Texas, Fossil Rim Wildlife Preserve, the Austin Rodeo, Six Flags, NASA or Johnson Space Center, Kemah Boardwalk, the Houston Aquarium, and the list definitely goes on! I used to have bone marrow biopsies every three months; I am going on 6 months without one! This, however, is more of a personal choice though. It seems like every other ALL Ph patient I speak to only has them once a year or so, so I would like to be in their club too. haha. That is really all I have to report at this time. Life is fantastic and I'm gearing up for a great summer with Ryan and Rachel! Oh, and this June I will finally be going to New York to meet and celebrate life with Lorenzo! I am over the moon at the opportunity to thank him in person for being there for me through the good, bad and really ugly. Still fighting, Katie