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

Day + 97

Day + 97, that means Friday is Day + 100! I was never sure if I'd actually ever say that. My blood counts have pretty much remained consistent except my magnesium, for some reason my body just wont absorb it. I take 9 magnesium pills a day and get infused with magnesium once a week at the clinic. Days are still up and down, there are great days, good days and just plain bad days. Today is a good day and I sure hope tomorrow is too as I have plans w/ great friends! I finally mailed my letter to my donor and I hope he writes back! I would love to meet him one day. I will have one more bone marrow biopsy Tuesday the 28th, should be the last for a while! yay! The best part of this month was having Ryan and Rachel out in the country at Aunt Sherry and Uncle JD's house! They loved playing in the sprinkler and playing with all the animals, and shopping! It was nice and peaceful! Thank you Aunt Sherry and Uncle JD! Rachel made a new best friend in cousin Amy, she keeps talking about hanging out and shopping with Amy lol it's too cute!

Katie

Day + 78

Hello Friends! I finally have a chance or feel well enough to blog this morning! I know it's been a while and in that while not too much has been going on. I've now had my 60 day bone marrow biopsy and everything was negative! The pcr, fish and bcr/able...all negative! Also the doctor told me I was "all boy" haha meaning all my cells are all donor cells so not only did the transplant take it did exactly what it was supposed to! I do take around 20 pills a day. Things for anti rejection of the transplant to steroids, anti virals, anti bacterials and a couple of them in combination have messed with my eyesight, loss of appetite, fatigue etc. Some days I still need to sleep quite a bit and others I'm ready to get out and do anything! That's really just about it as far as post transplant goes. On a happier note I've gotten to see Ryan and Rachel quite a bit this last month! Ryan's school had a mothers day tea and Jenn was nice enough to make a day trip with me to Austin to see him. And of course while there we couldn't leave with out seeing Rachel at her school too, she couldn't have been more excited to see us! Poor thing didn't understand that we were only there to visit and had to go back home so she cried for a few minutes and then we had to get going, broke my heart but I went back the very next weekend to take them to my best friends house for the weekend, we literally just stayed in all weekend and enjoyed each others company, they pretty much stayed right by side all weekend! Rachel had her first dance recital this past Sunday, I couldn't really make the 3.5 hour drive again as I usually get car sick but everyone said she did really good and I will just have to buy the video for $25 of her 5 min of fame on stage lol. Now I feel like I'm just rambling, like I said like is pretty boring right now, still just laying low and allowing my body to recover. Ms. Kennedy, I would love to plan a lunch or dinner one day, maybe your mom and Jenn would like to come too! You are amazing and strong and I can't wait to meet that awesome spirit of yours.

Katie!

Day + 33

Yesterday I had an appointment at Baylor as most of you already know. I still had to get an infusion of magnesium but I was fine with that because I had my sister Jenn there with me, we had good conversation and I was happy she was there for the big results. Then Mom showed up too, she usually doesn't miss anything! The Doctor finally came in and sat down. My first question was what was my PCR (the most sensitive test to detect the leukemia) and he said "less than one percent" my heart just stopped, it had occurred to me what he was telling me....that the leukemia is still there, he left the room to go get the "official report" and I just cried and my mom hugged me and Jenn had tears in her eyes. The Doctor came back and said "I'm so sorry I've made a big mistake, but a good one". Then he told us "everything is negative" and handed me the official report. He left, we all cried...again then Mom and I went to dinner to celebrate! It's still hard to wrap my head around "CANCER FREE" after all the chemo, radiation, stem-cell transplant, medications, etc... I'm so thankful for all the support and prayers and of course my ultimate healer God!


Love,
Katie

Day + 29

Well, it's almost been two weeks since I've been home. It's been up and down. The first two days or so were good, the next few...not so much. Trying to work out all the medication levels (all 18 of them) has been quite the nightmare on my system. I've been extremely fatigued just like everyone told me I would be, everyday I pray for strength and courage; and everyday does get a little better. Today I had my first bone marrow biopsy since my transplant, so I should know next week if I'm in remission. I've been going to the doctor usually every other day to have blood drawn and to get transfusions of magnesium as mine has been extremely low. My white blood cells have held in range but my platelets are steadily going down right now at 86, not sure if that means much but I guess it's par for the course. On a high note, my babies are coming for Easter! I talk to them via skype almost every night but there's nothing like having your babies in your arms! We'll be going out to Aunt Sherry's house....they love animals and even have a pet duck the kids love so they are very excited! That's really all I have for now and will update more as I feel better.

Love,
Katie

Second day home

I was released from the hospital on Monday, April 4th so I've been home two days now. I didn't really wrap my head around this "extreme fatigue" everyone kept warning me about because I walked every day at the hospital, but I've figured out what everyone meant now. I'm finding it very difficult to stay awake past 7:30 or 8:00pm and very difficult to wake up before noon then lay in bed until 2:00 or so. I will see the doctor 2-3 times a week for the next few weeks or so. Next Thursday is a "big" day. It will be 30 days since transplant and also they will be doing a bone marrow biopsy...probably the only one I'll ever look forward to haha. I can't wait to see if I'm in fact cancer free! I've started to write a letter to my donor. I had no idea how hard writing that letter would actually be. There are obvious things I want to say to him but I also have questions but don't want to be too intrusive. Any ideas would help...(Aunt Sherry???) I have an appointment tomorrow, so I'll update again soon.

Still Fighting,
Katie

Day + 17

It was great to see my Aunt Sherry and Uncle JD today! I know it's a long drive and just know it's greatly appreciated! Can't wait to come spend a few days in the country relaxing! My numbers are all still in normal range and climbing...on their own! So, now It's time to get home, recover the rest of the way and get back to life! So ready for ALL my mommy duties back, talking to the babies through skype is nice and neat and all but I just want to hug and kiss all over them whenever I want! That aspect has actually been one of the hardest for me of this whole ordeal is being separated from them. It wont be long now! I pray that each and everyone of you has a beautiful blessed day as I have. I continue to pray for you as you have for me.

Blessings,
Katie

Day + 15

Almost time to go home. It will probably be early next week (like Monday early)! It's bittersweet. I want to be home surrounded by my family, my own things, MY shower, seeing my Mom every day and my sisters more often; but on the other hand I worry about leaving my "bubble" here. I don't want to get an infection and be sent right back (I will still have a "baby" immune system). Although, I will have weekly appointments for a while to continue to check counts and make sure I don't need any transfusions so I guess that makes me feel better. The waiting game is also hard, waiting for all the tests to come back NEGATIVE for leukemia, which will be at least 3-4 more weeks. We've come this far, we can wait a little longer! So with that here are my numbers for today.

WBC's 9.3
HCT 35.2
Platelets 52,000 (my body is now making platelets on their own!)
TP 76%
ANC 7720 !

Day + 13 each day more exciting than the last!

WBC- 7.8
HCT- 32.1
PLT- 47K!
TP- 60%
ANC- 5850!

WOW! is all I have to say today. May thanks and glory be to God, my ultimate healer! Amen.

Love my butterfly Kimmi! Thank You.



-Katie

Day 12- nothing short of a miracle!

WBC's 4.0....NORMAL RANGE!
HCT 31.2...NORMAL RANGE! (NO BLOOD NEEDED)
PLT 15K....(NEED PLATELETS TODAY, BUT PLATELETS ARE THE LAST TO RECOVER)
TP 64%
ANC 2880! NORMAL IS 2000 AND UP! REMEMBER IT WAS 528 YESTERDAY!

My nurse today couldn't believe it, I only had one nupogen shot to help the new cells start producing like this but his immune system proved to be strong enough to go it alone! The severe back and chest pain has been very uncomfortable but well worth it, so worth it they are going to start weaning me off IV meds into pill form to get ready to go HOME!!!! REALLY? HOME? YES REALLY AND IN THE NEXT WEEK!!!! Once again your prayers for me have been heard...Thank you to each and every one of you!

Scripture of today:
This is the day that the LORD has made; let us rejoice and be glad in it! Psalm 118:24

Prayer for today:
Thank you God for the light of hope which shines through the darkness of my fears. Amen!

Day + 11....must read!

I had severe bone pain yesterday completely up and down my spine and in my sternum of my chest, needless to say I was pretty uncomfortable. But I fought it out as the Doctor and nurses kept telling me it's engraftment I kept my eye on the prize and kept telling myself it's good pain...WELL IT WAS!

WBC (white blood cells) from 0.3 or (300) to 1.1 (1,100) today !!!!!! awesome
HCT (Red blood cells) from 32.4 to 31.4 (still no transfusion needed!!!! woo hoo
Platelets from 22k to 18k (still no platelet transfusion needed!!! yay
TP (Total Percentage of wbc's) 48%.....

And THE BIGGIE! ANC (absolute neutrophil count) from 156 to 528!!!! those are some fightin numbers!!!!!!!

Still Fighting, Katie

Happy Birthday; Dr. Vance, Nurse Curtis, Kjenn in the bed, Kimmi, Aunt Sherry

Day + 10

Today is an exciting day! God is good and FAITHFUL! The good news? I HAVE COUNTS!!!! My White Blood Cells have gone from ZERO to 300! Hct or (red blood cells) are 31.4 so no transfusion needed, my platelets have gone from 9K yesterday to 22k today so no platelet transfusion either! My TP went from ZERO to 52% (I believe this is the Total Percent of white cells) and the biggest news is my ANC (absolute Neutrophil Count) went from ZERO TO 156! AND THEY ARE ALL THE DONORS CELLS!!!!! They expect to see numbers other than zero between day 10 and 14...I'm happy starting on day 10, they will only go up from here, this is why my bones were hurting so bad the last two days. The swelling in my hands are gone, the redness is gone, my feet are still a little puffy but not like they were! I continue to thank you all for all your support and prayers.

Scripture for today:
Do not fear for I have redeemed you; I have called you by name, you are mine.
Isaiah 43:1b

Prayer for today:
Thank you God for your faithfulness which sustains me each day and your love which refreshes my spirit. Amen.

Love,
Katie

Day +9

Hi, It's Jenn! I am going to try and update you on what has been going on the last few days.

Wednesday afternoon Katie began to swell so bad in her feet and lower legs that her toes started going numb. They gave her lasix (a medicine to make her urinate and decrease the swelling) It didn't work. The reason it didn't work could be because the swelling is from the donor cells starting to find there way to Katie's bone marrow! She was in a lot of pain from her skin being so tight with the extra fluids. Katie also started having blood in her urine. Thankfully both of these things have resolved to some degree.

Today Katie has a fever of 102.9, she is hurting all over and is nauseated. The Dr. thinks the fever and the pain are from the donor cells starting to engraft. They have decided to not give her the neupogen (shot that helps increase the white cells) and start steroids twice a day to help with graft vs host (where the donor cells attack katie's cells).

All in all, Katie's body is doing what we expect it to at this point. Her counts are still zero today and she will need to get a unit of platelets. We are expecting her to start having white counts again somewhere between Day 10 and 14.

Katie's spirits have been down the last two days (who could blame her) but she still is

fighting with the little energy she has.

Please pray for her body to accept the donor cells and for her spirits to stay positive.


Love,
Jenn

Day +7 =)

Hey guys it's KATIE! I've been up since 4am and just couldn't go back to sleep. It's 7am now so I decided I would blog. Yesterday my sister Kim came to visit as well as Aunt Sherry! I guess I should back up an hour before they came. My counts made it to ZERO which is what we've been waiting for! Well, as expected I needed platelets again... so I was having a little anxiety about having a reaction again. They pre-medicated me with more stuff this time to prevent any kind of reaction but guess what, not 5 minutes into the transfusion the rash started! Luckily my doctor just so happened to be on the floor and came in and had the nurses stop it immediately. They drew my blood to type and cross match just to be sure there wasn't some kind of mix up. Here's an interesting fact I learned yesterday, unlike getting a blood transfusion platelets are comprised of many different people, so any of those people could have allergies I'm allergic to. Now enter Kim and Sherry, yay! I was so glad they would be there for the platelet transfusion. Ultimately the lab found me a bag of just one donor instead of many, all went well, before I knew it, it was done and I didn't have any reactions, thank you Jesus! Kim and Sherry decided to go look at the new building and get some food from the new cafeteria and on the way they found the new gift shop too haha. Kim found me a beautiful orange butterfly! Love love love it, Kim and Jenn know me too well! Kim had to go pick Haley up from school so Sherry and I were left to our own devices. Sherry indeed brought pictures and we managed to do one scrapbook page haha that's good for us, we get side tracked a lot. I just wrote this long blog and realized I'm going to have to get back on later and tell you all my new counts....hopefully Mr. Donor has started engrafting (although I may be jumping the gun a few days) it's nice to dream lol! Mom is coming for lunch! I can't wait. Still Fighting Katie

P.S. Counts are as follows

WBC (white blood cells) <0.1 HCT 24.9 (will probably get a unit of blood today) PLT (platelets) 29 (woo hoo don't need any today) TP 0 ANC 0 We're only on day 7 and in reality we won't see counts go up until day 10-14 so we're still okay. I can't find a good picture for today, I can't get Kim's butterfly to upload so I may just put an oldie but goodie! Okay not an oldie but a goodie! Congrats Kim and Sherry, you made the blog!

Day +5

It's Jenn again!

Overall today has been a better day for Katie! Her mouth pain has been better controlled since starting on the Dilaudid PCA and she/the nurses has figured out a regimen of 3 different mouth rinses/medicine to enable her to eat (select foods). Katie had more energy today, but says she feels the fatigue set in faster when she tries to walk or exert herself too much. Her face is still very swollen from the mucositis and her feet are starting to swell again.

On another note, her blood culture came back positive today from her central line. It will be at least another 24 hours before we know the exact location (the peripheral culture has not come back yet) or species. The Dr. said if he had to guess it is staph (it lives on your skin and has many openings to enter with her mouth sores). The good news is that Katie has not had a fever since yesterday so one of the 6 medications they started "just in case" is working on the infection! Hallelujah!!!!

Katie remains in great spirits despite the small setbacks she has had to endure. Keep praying!

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

Love,
KJenn (a nickname we came up with a long time ago combining our names :-)

Day +4

This is Jenn again! I am at the hospital visiting Katie and wanted to give everyone a quick update.

The last 24 hours have been very trying for Katie. Mucositis (sores and inflammation in mouth and digestive tract) has started which is very painful and will get worse before it gets better. She looks like a chipmunk with the swelling in her cheeks and is having problems eating and talking. They have started several medications to help including a PCA (patient controlled pain pump) of Dilaudid. She also got her first temperature of this round so along with that came lots of blood tests and new medications to help with possible bacterial, fungal, and viral infection. It is too risky with transplant patients to wait until the blood cultures come back to start treatment, so they start everything to be on the safe side.

Katie also needed a platelet transfusion today. She developed a rash from head to toe that was red and itchy despite getting benadryl before hand to help with possible reactions. They gave her some iv hydrocortisone and that stopped the rash. It isn't completely gone yet, but it is not getting worse!

On a good note, Katie is in good spirits and is determined to win this battle! I am very proud of her! She continues to have a lot of support from family and friends which she says has kept her in the fight and makes her more determined every day to get through this. On that note, we continue to thank you for all your prayers and support. Katie (and family) couldn't get through this without each of you. Thank you!

Love,
Jenn