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

Chronic Graft vs Host Disease :(

Hello a year and half post transplant! I can't believe it's been 6 months since my last update! And so it is, LIFE GOES ON AFTER CANCER. A quick update; I have moved back to Austin, TX just like I always said I would. I DID go back to work full time in a pediatric clinic, I am a full time MOTHER again to Ryan and Rachel who started first and second grades this year! I really dove right back into life. Big move, full time job, full time mom (including Martial Arts and Baseball for Ryan, and Gymnastics for Rachel)! I go from 5:45 am to usually 11:45 pm. Since being back with the kids we've been to Sea World with Aunt Jenn and Uncle Adam, many days spent at the pool or water parks around town, the circus, back to Arlington to visit and so on. I will NOT ever lay in a hospital bed again fighting for my life and question "why didn't I do that when I had the chance?" If I want to do something, I'm going to do it now and not wait; wait for what anyway? I have a completely different attitude about this life now. I try to do every last thing I can with Ryan and Rachel NOW! It's all about making lasting memories today, because that's all I'm really guaranteed. Having said all that, this just wouldn't be a cancer blog without COMPLICATIONS FROM THE CANCER TREATMENT right! LOL. That complication is coming in the form of chronic graft vs host disease of the musculoskeletal system. It sucks. It's very difficult to describe how it feels to have someone else's immune system attacking your joints and muscles but this guy's cells are wreaking havoc on mine! My hands and feet will cramp into weird positions and stay there for a few MINUTES...like getting a charlie horse only you can't stretch it out...AT ALL. In the last few weeks it's been happening in the top of my feet like in between the small bones in there and there is no way physically possible to "stretch" it out, it stops me dead in my tracks, it happens in my calves, behind my knees, my hips and the hands. IT'S A NIGHTMARE! It happens unexpectedly, it happens at work, it happens just sitting on the couch, it happens while writing, it happens ALL night sometimes! I'm very frustrated at the moment. About two weeks ago my doctors decided to start the steroids again. 60 mgs of Prednisone, my nemesis. Also, back on the anti-rejection medicine Prograf. Prednisone makes you crazy. I haven't slept good in days now, mood up and down as they take me down off the steroid and then back up as the pain gets worse when I go down. UGH. They say this will be life long but "manageable". Awesome, can't wait to start managing! I will be going to Dallas on Thursday evening to be up bright and early for...wait for it...A BONE MARROW BIOPSY! Yes, another one of those. I'm focusing on seeing the family, I really need some good family time this weekend! Just being there laughing, eating and enjoying what families do. Mom's making a roast with all the fixins. Mmm. I've considered not working full time anymore. I can't imaging being ONLY 30 (Lorenzo) ;) and NOT working. Maybe I'll become a room mom for one of the kids' teachers, or take a cooking class, go back to school and do something completely out of the medical field that would be less stress (and pain) on my poor body, I just don't have any ideas yet. But I do feel this may be a good road to consider given the new circumstances. Any and all ideas for a new career path are welcomed! I need to(and will)update this more often. I have recently found someone new that has been recently diagnosed with this awful disease process. She too is a young mother with a husband and son. She has started her first round of chemo this week and has NOT been feeling well. Rita, I lift you up through this round and pray your body does what it needs to FIGHT the cancer and may your counts recover quickly so you can get home and rest. Still Fighting, Katie 18 Months post transplant....I'M FINALLY GETTING SOME HAIR!

ONE YEAR POST TRANSPLANT

Wow, where to even start?! It's kind of difficult for me to look back at this last year. I've read my entire blog over this week. It really puts into perspective just how much not only I, but we as a family went through. There were many occasions I was ready to throw in the towel and give up (the easy thing to do anyway), but you all simply weren't going to let that happen. There came a point where I had to make a decision; I was either going to fight through it all or I wasn't and if the latter then why bother at all? When I was diagnosed they laid it out to me in very simple terms; you will endure 6-8 rounds of chemotherapy, WE will find you a bone marrow donor, then you will have a transplant. Never in a million years did it cross my mind that I may not ever find a donor...it was never presented that way so why would I? Today I know exactly how lucky I am to have not only found a donor, but one perfectly matched to me 100%. Some people never get a donor at all. And so it was, I went through my rounds of chemotherapy, they did find me a donor and I had my transplant just like they said. Not without complications of course, I mean what kind of cancer treatment would that be? HaHa! But, I fought through it all, and when I say I fought through it what that really means to me is I put up with all the pain, vomiting, rashes, taking an obscene amount of medicine, infusion after infusion of magnesium, potassium, IVIG, bone marrow biopsies, spinal taps, pneumonia...twice, shingles, muscular atrophy, difficulty walking, emotional pain, anxiety...need I go on? What a roller coaster ride of a year it has been! There were ABSOLUTELY days I prayed the good Lord would take me home, days I thought I'd never make it through another day, days I thought to myself, "well, yes I made it through transplant but at what cost? To live crippled by these multiple symptoms I endure on a daily basis that were pure HELL!?" Those feelings were very real to me. My Mom and I were sitting in an ICU room while we waited for a regular room to be ready for me that my transplant would take place in and I remember saying "Mom, I'm terrified and don't think I can do this" and she said "Katie, don't you ever give up on me!" Probably the most heart wrenching thing you could ever hear your parent say to you. And that has stuck with me throughout my journey. Mom, I will NEVER give up on you! I was constantly reminded by MANY people to "take it ONE day at a time". Truer words have never been spoken! I'm proud of myself most of all. HERE I AM! ONE YEAR LATER! And I can tell you all IT DOES GET BETTER! Wow, never thought I'd ever say that! I feel great too! I'm down to one pill a day, I have joint pain but I can deal with that! All the burning I used to have in my gut and esophagus is completely gone. I do get heartburn occasionally but NORMAL people get that too! My CONSTANT nausea is no longer constant but occasionally now, I still vomit if my stomach doesn't like something I eat but at least I can eat "almost" anything I want now! I'm a healthy weight, my skin looks great (no graft vs host disease) and I'm ready to go back to work full time and back to being a full time mommy to RYAN AND RACHEL! They are beyond ready to have mommy back too! I wrote this blog to hopefully help someone else in this situation that thinks they can't do it or thinks "this will never get better". It does and it will...one day at a time. I'm sure I'll still have hiccups along the way but I know if I lived through this last year, I can LIVE through anything! Still Fighting, Katie

LORENZO and KIM

Wow, Where do I even start. A day or two after I was diagnosed w/ Leukemia my sister Kim went on a mission to find someone I could relate to and draw inspiration and a positive outlook from. We knew my diagnosis came with a grim prognosis from what we were told and then even worse when when we found out I was Philadelphia chromosome positive. Kim went on to do her research which I actually knew nothing about at this time. And I remember her coming into my hospital room one day, probably one week after my initial diagnosis and she sat down on my bed and said, "I just wanted you to know that I have found someone with your exact diagnosis and he has a blog I'd like you to read". At this point I was pretty sure I was going to die. My doctor at the time didn't have a single patient with my cancer, didn't know of any doctors that did and there were no support groups in my area with my cancer because obviously you need patients or survivors for that...there were none. So while my family and I were set to "give this our best shot" I must say in the back of my mind I was thinking "I'll put up with this until I cannot physically do it any more". I had heard and read horror stories about going through chemotherapy and quite frankly, I wasn't interested in "being sick". Kim knew how sad I was; sad I had dropped my children off at school and two hours later I was diagnosed with cancer, sad arrangements had to be made for them to be picked up from school because they told me my life hung in the balance and I must stay to start chemo the very next day, sad someone else had to explain to them that mommy is very sick, sad (and grateful) their father came to pick them up, sad I didn't know if I would ever see them again etc...I think you get the idea...I was sad, depressed however you can identify. But Kim also knew that reading this mans blog would change my outlook completely because she had already read the entire blog before telling me about it for the obvious reasons. You can read and have a good understanding of illness usually with no problem but there isn't as much on ours. I read the blog. My Mom read the blog. Jennifer read the blog. Aunt Sherry read the blog. We all had a better understanding of what was to come after reading "THE BLOG". (except for Jenn, she was my guru in the medical sense). It was a man in New York named Lorenzo Fortunato. Reading it immediately changed some of the feelings I had. He still lived his life to the fullest extent he was able given his situation. Talk about turning lemons into lemonade! This guy did it! But after reading it a deep dark feeling came over me again. I said "Kim, did you realize his last post was June 27th? This is October. (Yes, we did think he probably passed away and no one updated his blog). It's was still so inspirational that I read it daily. I would research terms I didn't know and came to know quite a bit about my cancer through his blog. It was maybe a week or two later that Kim came to me again and this time she didn't even sit down but couldn't wait to tell me that she found him! Yes folks, she facebook stalked him and found that not only is he alive AND well, but that he is pretty active on facebook, so she sent him a message...(Kim would NEVER send a random person a message on facebook, but she did this solely for me! She needed her sister to have that "FIGHT" in her and she was determined to give it to me)! When I learned that he had responded, it's weird to explain, but it was like Christmas to me. I would finally have ONE person that I could relate to! It's not like breast cancer (raise your hand if you know someone with it, who has had it, a family member with it, a friend of a friend etc..) everybody knows someone...Susan Komen has made sure of that. I needed this one person....badly! And God picked the perfect person. He has been a huge part of my treatment and recovery. He certainly knows when I'm having a bad day, and why I have some of the feelings I do when others don't...what human being doesn't need that? He's been a great mentor and friend and I need him to know that! His staple is "HOW U DOIN"....hello, he is a New Yorker haha. I bring that up because the day before my transplant he called the hospital and the note I got said "Hi you're doing"...yes, well not everyone in Texas understands a New Yorker I guess lol. But it felt great knowing he was there cheering me on! Kim recently got to meet him in person in New York, she had the best time and I was excited for her! Ten months post transplant. Lorenzo is 5 years! This gives me new hope and inspiration on a daily basis. How u doin!

Letter from my Donor!

What a blessing to be home with family and with my children for Christmas. Last year I started a round of chemo on Dec. 26th so that was no fun. It was so wonderful to be in a whole new state of mind this year. Last year we didn't even know if I would see this Christmas. My friend, Samantha, I often mention had her transplant on Christmas Eve! So far she is doing well. She has not experienced gvhd or engraftment yet but I know she is in for a rough few days soon. So prayers are going out to her and her family.

I FINALLY RECEIVED A LETTER FROM MY 23 YEAR OLD GERMAN DONOR! I do not have very many words to even explain how I felt when I opened a piece of mail from Baylor and it wasn't a bill haha but a letter from my donor! My heart was racing as I saw the words Dear Receipient! I was starting to wonder if my letter ever made it to him. Or maybe he was wanting to remain annonymous. He may even read this one day and laugh...or think I'm just crazy...(if you ever do read this, just remember we do share the same DNA now) haha. It's already kind of interesting that we both share an interest and love for the medical field. I wish I could ask him a multitude of questions right now! I'm very excited to start a relationship with him and cannot wait for the day we meet in person!

My 9 month bone marrow biopsy was inconclusive and I chose not to redo this one. I will give my back a rest and wait until my one year which is only 2 and a half months away!

Still Fighting.

Katie.

9 Months post-transplant.

I will be having my 9 month bone marrow biopsy tomorrow. I hope the results are just as good as the last 3. Only one more for my one year and boom, I think the every three month biopsies will go to every 6 months or maybe even a year, I'm not quite sure yet. Either way I'm happy with whatever because I'M ALIVE! I still do carry some anxiety about relapsing but from what I hear this is normal. So as soon as I know my awesome results, so will you! yipee. Now onto my friend forever Samantha! She goes in Friday to start her conditioning for transplant and needs ALL of our prayers also! Please pray for Sam to have strength and courage! I know she will do great! I also had the pleasure of going the see the MAZE this week. If you have not heard of this fantastic show please google it. Jim Munroe has been blessed with amazing talent. Not only do we share the same diagnosis of cancer and have both had transplants and came out with flying colors but he has taken his illness and turned it into a way to not only educate people on it but to also witness to young children and teens on how God works in amazing ways! The magic is great and all but the message is the real miracle! I do know he will be in Keller in January! GO SEE THIS SHOW!!! It's Free! So I will be back in a few days to update you guys on my results, then we can talk about my "big move" as well!

Still Fighting,
Katie

7 Months post transplant

7 months post transplant....and still in REMISSION! The second bone marrow biopsy came back as "no leukemia detected". Such a blessing. Starting to think about working again and moving back to Austin to take on my role as a full time mommy again! I cannot wait to be able to hug and kiss my children everyday as they deserve. We've all missed each other so much and they are to the point now that they can tell mommy is getting "stronger" as Ryan likes to say and they ask relentlessly "mom, can we live with you now"? It warms my heart but I still have to say, just a little longer. And that is okay with me as I look back and see just how far I've come! To people around me it may not seem like a year is that long but when your the patient, to me I feel like my battle has lasted forever! Today, I am happy, feel well, and eager to move on to the next stage in my life....but this could all change tomorrow lol. Bad joke I guess, I just mean I still have good, bad, and really bad days =)

Thank you all for your continued love, support and prayers!

Love,
Katie

Ready for a New Week!

What a week! As many of you know, I had a bone marrow biopsy last Friday. It usually only takes two or three days to get the results back. We usually just e-mail my doctor's nurse and she e-mails us right back saying everything is negative. So, I did just that and e-mailed the nurse. A few minutes later I got a call from my doctor's PA. He first started by telling me that my pcr (a sensitive test to ck for leukemia cells) and my bcr/abl (the test that cks for the ph + gene) were both negative. Then he said BUT they've detected 1% of b-cell leukemia/lymphoma in your bone marrow. I didn't know what to say back. I stood there in shock as he was trying to tell me "don't worry, we'll do another blood test in two weeks and another bone marrow biopsy in 4-6 weeks". In my mind I was thinking "is he crazy? This cancer grows so fast that in 4-6 weeks that 1% will be 100%!" So, we end the call and just like that every single emotion I felt when I was diagnosed just flooded me at once. I didn't know what else to do but of course call my Mom. My Mom and I decided we needed to go and talk to my doctor directly about these results and find out my options while it's still early. My Mom e-mailed his nurse first thing Tuesday morning asking for an appointment and also if she could get a faxed copy of the results. She got both! They gave us an appointment for that afternoon and she faxed the results. Upon viewing the report I realized it was actually 3% leukemia and not 1% like I was told over the phone (by the way, since when did doctors start giving less than good news over the phone anyway?). I felt even worse, because I had relapsed right before my transplant, and when I did I went from them seeing 1% to 3% to 8% in a matter of days in my blood and marrow. That afternoon we went to the clinic. My doctor came in and we discussed the report. After voicing our concerns he stated, "I strongly believe it's a mistake". Naturally, our next question was "why do you think that"? He basically said it's virtually impossible for the pcr and bcr/abl to be negative and the marrow show 3%, if that was the case then those tests would be showing positive. He also said they had new interns in the pathology department and had received a few sketchy reports over the last few weeks. I wont even go into my feelings on that. Oh wait, yes I will, just one comment; why in the heck would you call someone with those results if they had not been double checked or signed off on by the doctor in charge of those interns? That is all on that. So Monday I was basically told I was relapsing, Tuesday, "we think it's a mistake" to Wednesday night I got a fever that went up to 101.8 for no apparent reason the fever lasted about 5 hours then by morning everything was back to normal. Makes me wonder even more. Yesterday, I just laid low at home. I had a little less anxiety also. Today is Friday! And for myself, my Mom, Jenn, and Kim, we will be putting all this aside for one night to have a girls night of dinner and seeing comedian Anjelah Johnson at the House of Blues in Dallas.

P.S. We will be repeating the bone marrow biopsy on Wednesday October 5 (exactly one year since my diagnosis).

What is going to happen is going to happen. I have faith that this is all one big mistake, I truly do not believe God would have brought me this far for no reason. I will continue to fight this battle for as long as it takes.

Love,
Katie

6 Months post transplant!

Wow, 6 months since transplant! Not too much to report really. I did spend about 10 days in the hospital a few weeks ago with a lung infection. All better now, my new immune system must be working haha. I had my 6 month bone marrow biopsy yesterday, Jenn was with me and it actually went pretty quick! Then we ate and shopped most of the day. Getting ready for a few busy months coming up. Mom, Kim, Jenn and I will be going to see a comedian at the House of Blues next Friday...girls night out woo hoo! Then the family + Ryan and Rachel (the babies) will be going camping in October! Can't wait to fish with the babies. Hopefully they love it like mommy does! Then we have the LIGHT THE NIGHT WALK through the Leukemia and Lymphoma society Oct. 23rd! You can help saves lives by making a donation in my name at lightthenight.org and search my page via my name (Katie Maldonado), every little bit helps from $5 to any amount you want! Then of course Halloween, Thanksgiving and Christmas are all busy busy, I'm sure you can all relate =) I went to a bone marrow survivor reunion at Baylor with my Mom and Jenn a few weeks ago and there was a man there named Jim Munroe. He is a magician but also had ALL ph+ (first person I've ever met in person). He was a great motivational speaker.

All in all I'm feeling great again, a little worried about cold and flu season coming up so I having a feeling I'll be doing a lot of shopping online this year for the holidays! lol I will definitely be bringing out the masks as places get more and more crowded....maybe some gloves too haha. October 5th will be one year since diagnosis and let me tell you, it feels like year(s) to me! We're all still fighting here and will continue to do so! An update on my friend Samantha - she is now at the Dana Farber clinic in Boston getting treatment and just found out she has 20 preliminary matches in the donor registry! This is great news for her!

Still Fighting,
Katie

August 10th

Well, I had an appointment at Baylor today. My numbers are messed up again but "you look great" haha thanks doc. I still feel like I've turned a corner though. There are always set backs along the way big and small. I've been having a sharp shock-like feeling if that makes since down my spine when I move my neck up or down. So next week I'll have a lumbar puncture and an MRI of my spine. I'm okay with that. Just figure out what it is wrong and take care of it and move on! On a happy note, doctor says I can get back to work whenever I'm ready now. I'm ready to start working...part time...to make sure I can really handle it 5 months after transplant. He stopped a few more meds today including my blood pressure medicine! yay! But he wants me to check my bp often and wants me to have my own bp machine at home....my insurance covers it, even better! I've been stretching and working out (very light working out) and I've been getting really bad cramps in my calves like charlie horses that don't let up, so I guess I'll try doing it maybe every other day until my legs start getting used to it. After all, after being in a bed for 7 or 8 months I have quite a bit of muscle atrophy and it's not easy to build them back up, but I'm putting in great effort so hopefully it will get better soon...no pain no gain right? haha. I spoke about Samantha a few days ago, and I'd like to quickly update you on her. She finished her induction chemo and was sent home only to find out that she has multiple blood clots from her neck down her arms. So she will only spend a few days home until she goes back for round two of chemo. She is taking a blood thinner for the clots but I just don't understand how that happens really, because our platelets are so low at that beginning point and the blood has a harder time clotting. But it did happen and she really needs our prayers! I would love nothing more than for all my friends, family and strangers to pray for her as you have prayed for me! I greatly appreciate your love, support and prayers!

Still Fighting,
Katie

5 Months Post Transplant

I don't even know where to start! So much has happened in the past 3 weeks or so. I guess I'll start with my favorite thing that's happened; I FINALLY FOUND SOMEONE ELSE MY AGE WITH ALL THAT IS ALSO PH+ LIKE ME! It only took 10 months haha. Many of you know how hard I tried to find just one person, and then that person found me! yay. Her name is Samantha, she lives in Colorado and was just diagnosed July 14th I believe so she is still in the hospital for her "induction" round of chemo which usually lasts about a month. She has two siblings that will be tested to see if they are stem cell donor matches if not then she'll go to the national registry to hopefully find a completely matched donor. It makes me extremely happy to be able to help and coach someone through this, especially because I can pretty much guarantee she wont find anyone else for a while if at all that's our age. Like myself, she too is a young mother of a young little boy. I pray that as you prayed for me that now we can all pray for her as well. Meeting her was definitely a blessing to me. Now an update on myself. I FINALLY FEEL LIKE I'VE TURNED A CORNER! I haven't been sick in 3 weeks! Getting more energy each day and I actually would like to start working again! Of course I have to see if my doctor will release me to work but since winter will be here in a few short months I really don't know if he will given I wont have any of my shots (all the ones babies get from 2 months on), and I don't know if he'd want me in a crowded office, hospital especially, or clinic for that matter. We will see. I would start at part time of course to see if I can handle it or if I jumped the gun a little. Most people don't feel "normal" again for 8 months to a year from what I've heard and read but hey I'll never be "normal" this is my new normal. Last week my numbers were in great shape, my platelets were even 150,000 which is the highest they've been since I was diagnosed. Oh and we're starting to wean off some of my medicines. I hate taking 20 something pills a day so I'm 100% ready to cut it as much as I can and believe me if that means begging Dr.V to get off something I'll do it haha eventually he gives in and says "ok w can drop the dose or cut it in half then ok lets stop this med" and score one more gone =) My sister and one of my biggest fans is celebrating her birthday on August 16 as well as my daughter Rachel and friend Brianna, it will be a busy month. I'm hoping to go to Austin in 2 weeks to see the babies and of course I could never miss my princesses very first day of kindergarten!! Ryan will be in first grade, I'm so glad they have each other. Thank you all for continuing your love, support and prayers!

Still Fighting,
Katie

Kjenn and Rachel! Happy Birthday Girls. Love you infinity x the world!

Day + 120

They say if you get "a little bit" of Graft vs Host disease before day 100 it's a good sign everything will go pretty well, and past 100 days (chronic gvhd) it will probably be pretty bad. I don't know where I stand, I'm at 120 days and I've had NO graft vs host at all. Now, I feel like hmm "will I get a rash today"? I don't know how many people have "never" had gvhd but I doubt it's many. I still haven't found anyone my age with my exact diagnosis so it's still hard sometimes not having a group I "fit into" so to speak. And I only know one other person with my exact disease (Lorenzi you've been wonderful to me and a wealth of information!) It's funny because when I go to the doctor once a week they say "everything looks great"! and they give me my counts and I just laugh because everything has either an L (low) or H (high) so I'm like okay I'm glad you think that's excellent, yeah I get they want to be positive to keep me positive but come on sometimes you just have to be real. Lately I have talked to several people with ALL but no PH factor like me, almost everyone I've talked to has relapsed and gone through 2 transplants or have severe gvhd, and my cancer is supposed to be far more aggressive. It's hard not wondering if I might relapse, but that's no way to live so I'm constantly telling myself God is still on my side and maybe I'll be the miracle person that just had a perfect donor who never gets gvhd and lives to be 100 who knows haha nice thought uh? My family continues to support me and keep me positive when I have those "bad" days, and when I have a bad day, it's really bad. But slowly but surely as time goes by there are starting to be more good days than bad, Mom always reminds me of this (thanks Mom), and somehow Jenn always knows when my appoints are (even when I have no idea haha; I can't remember yesterday lol) and calls to ck my numbers and see if anythings new. I think she's only missed 2 biopsies (the next one is 3 mths Jenn, so we gotta get our dates together =) And I have the other sister KIM (the compulsive shopper and most "on the go person I know"! She tries to stop by on her way home from work after 12 hours of work bringing babies into this world, we talk often and go out when we can! All of my Aunts, uncles, and cousins are all supportive and wonderful too. This last week I had the babies! We went to Midevil times to create a really fun memory for them, Ryan said "I want to be a knighter when I grow up" and Rachel correcting him every time haha "No Ryan, it's called a knight" every thing was perfect and "normal" for a whole second when I hear her correcting him lol. Rachel is 4 and fluent in English and Spanish, it's quite funny hearing her and Ryan converse because Rachel will talk to him in Spanish and Ryan will respond in English. Ryan says he doesn't know Spanish but when he called his Abuela while here I secretly heard him speak an entire conversation w/ her...in Spanish because she doesn't speak English...busted Ryry=) That's about it as far as life goes right now. My Grandmother just turned 90 this month! I just thought I'd throw that in as well. Love you Grandma!

day + 104

Not too much to report. Tomorrow I have my 3rd and last bone marrow biopsy for a while. Um, I've lost 40 lbs since transplant day, I have hair coming back....finally....hair everywhere but my legs, makes for a great summer =) It would be awesome if it never came back but I know that's probably not possible haha..wishful thinking. I really don't have much going on these days but getting my strength back...which isn't easy, I watch a lot of movies, take lots of naps...etc...just what the doctor ordered so I guess this time I'll listen =) I'll post when I get my 3rd set of results from the bone marrow biopsy!

Love,
Katie

Day +100

WELL WE'VE MADE IT FOLKS! DAY 100 POST TRANSPLANT WITH NO MAJOR COMPLICATIONS THUS FAR! I DON'T REALLY HAVE MUCH MORE TO REPORT LOL BUT I'VE FINALLY HAD A FULL WEEK W/OUT BEING SICK AT LEAST ONE OF THE DAYS. THANK YOU AGAIN FOR ALL THE LOVING THOUGHTS, PRAYERS, CARDS, AND ENCOURAGEMENT ALL THE WAY. EACH AND EVERY ONE OF YOU HAVE HAD A HAND IN MY FIGHTING THIS LEUKEMIA!

STILL FIGHTING,
KATIE