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!