One Month...

One month ago, our life changed completely. Today, we celebrate Memorial Day and we celebrate life!

Since I last wrote, Daniel's liver enzymes continued to rise, so the physician ordered an ultrasound of his liver, appendix, kidneys, gall bladder, etc. Everything checked out fine, the enzymes began to drop, and he is doing much better. He is still off of most of his medications, due to the enzymes still being elevated. We also learned, that he most likely, will be coming home this week or weekend! Of course, I had a whole list of questions- the biggest one being: "Is our house Daniel proof". Actually, by the time that Daniel is released- his immune system will be compitent enough to withstand people and things, unless, of course, they are sick. He will not be able to go to public places, unless he wears a mask for a little while- but, he has too much catching up with his children  and family to have any time for that- right? If you plan on visiting, please shoot me a phone call, or message of some kind. Daniel will have several doctors appointments following his release, and, we plan on scheduling the visits according to those, and most importantly, how he feels each day. We most certainly do not want to overwhelm him or make him more tired than he will already be. Tired = SICK, and we don't want that. We do know two things: Another round of chemo will follow shortly, and two, we have a birthday party to plan between him being home and his next round of chemo.

Ashlynn turns SIX June 23! Oh my gosh- so hard to believe. She has been planning her party for a few months now. I hear that it will involve puppies and a swimming pool. We must get to that immediately, as I am most certain, we are buying our time until the next round of treatment. Daniel can not miss the party!

Look for good news in the later part of the week. Daniel is so excited about the break from the hospital- especially since he is feeling better these days. Until next time... XOXO

Looking back...

Looking Back:

I have always looked at our children, and tried to figure out who they looked like, wether their personalities were more like me, or their daddy. There is no denying this... they all 3 have my eyes, but the truth is, more and more, I realize how much they look like their daddy, and act like their daddy. Ashlynn, has the heart of her daddy, Avery- she has the wit of her daddy, and Mia, she has the curiosity that her daddy has.

I remember when St. Louis scared me- that is driving in the city. Now, I am figuring my way around- not hardly nervous a bit.

I remember when Daniel snored at night, I would kick him, slap him, anything to get him to stop. Because, I wasn't sleeping at night. Now, I lay in the cot, doing everything that I can to get to sleep. Watching him breathe, not even snoring. Me, still not sleeping because, want to listen for anything that he may need, and help him be comfortable, whatever way that maight be.

I remember when people that Daniel dealt with day-to-day, were merely just names to me. He always talks about these people- who, before now, I wouldn't be able to connect a face with a name. Now, I see faces, and these people, are amazing, and they have hearts. He has so many people that he calls friends- and y'all are amazing.

It's funny, because I look back to how I always thought that my life was perfect. That I was never going to experience anything unthinkable. That, when people talked about situations that their family endured (bad situations), that was never going to be me. Reality is, no one's life is planned. No matter how charmed we think that our life is... it isn't. Everyone has little speed bumps in their life. So, today, I am trying to figure out our future. And, it is hard.

Daniel- he is treading water. The physician says to be patient. It too, is hard. We are beginning to see people that arrived around the same time frame as him- go home. Hopefully, our turn, will be soon. He is doing really good. Eating 3 meals a day, maintaining weight, and doing what he is supposed to be doing. His liver enzymes are a little elevated, so the dr. has put some of his medications on hold. One of which, controls that "philadelphia gene" issue that he has. Hoepfully, he will be able to put him back on that med real soon! The physician that is attending to him this week mentioned to us that the cancer that he has relapses more often than others. So, until he recieves the bone marrow transplant, there is still a chance that it can relapse. If everything falls in to place, they are hoping to perform the transplant in July.

On a another note, I want to thank each and everyone of you for following our journey. It means so much to Daniel (us), to know that he is not fighting this alone. Knowing that he is not alone, makes it easier. Thank you. XOXO

Looking Up

I know, it has been a while, right? The girls made a short trip to St. Louis for the weekend with my in-laws. Saturday, we crammed the Magic House, swimming, and most importantly, spending quality time with Daddy in to the day. Whew.... Sunday, after a short visit at the hospital, I loaded Ashlynn and Mia up and we headed home. Avery, rode back with Erin and Jarrod. She wanted to visit Daniel a while longer. We tried to get Avery to cut her Daddy's hair- it didn't work. That being said, Daniel finally bit the bullet and shaved his head, after we left. He is sporting the bald guy look! I, am still at home, finishing up a few things before I head back in the morning. Last night, the girls had a gymnastics program. So proud of them! Afterwards, I was talking about Daniel to Ashlynn's coach and her husband.  Ironically, a lady approached me, told me her name and said "My family has been praying for your husband, and so has my church's congregation".  I had never met this lady before last night. All that she had to hear was the name Daniel, and a tid-bit of my conversation, and she knew. My heart is so touched by all of the "new" friends that we have made!

Grateful- is how I describe our family right now! We are so grateful to have such good family members, and friends. Thank you for all that you have done for our family- wether it be spiritually, providing meals to nourish my children, the emails, text messages, phone calls, greeting cards, and any other forms of offerings. Thank you for taking care of us, when we couldn't do it ourselves!

On to the news- I am sure that most of you already know, but, Daniel recieved wonderful news from his doctor last night. Preliminary results indicate that the treatment worked. So, what happens now? The truth is... I can't really tell you. I do know this: before the last bone marrow test (last Thursday), the doctor mentioned that if the test came back good, they would continue to let Daniel's blood counts get higher, repeat the bone marrow, and possibly, he might get to come home. They thought that it would take approximately 10 days for the counts to be where that they needed to be. At that point, they would discuss discharge information. I do know that there will be, what they call, "maintenance chemo", which will be smaller chemo treatments (possibly 3-5 days), until the actual bone marrow transplant. Those treatments will be completed in the hospital at Barnes. Daniel will have to stay during that time, but, most likely, not any longer.

A break, Daniel needs a break. He deserves a break! Looking back to April 30, when we found out the diagnosis, I can rememer talking to Daniel on the phone. I asked him what he thought about the "situation". The one thing that he told me was that it was going to be OK! You know what? He tells me that every single time that I talk to him. I know that the last month has been hard on Daniel, and the whole entire family. But, I can honestly say, as his wife, I am a much stronger person. He is a stronger person. I am positive, that his parents, and sister are stronger people. The rest of the family- stronger, friends- definitely stronger! We have all helped him fight this battle (sometimes, wishing we were fighting it for him). Without the love, prayers, strength, motivation and tenacity, we may not be where we are today. Daniel, is BRAVE! So, today, I want each and everyone of you to send him an email, text, or call him, and tell him CONGRATULATIONS. This man deserves it! I am sure that he would love it! Enjoy your day. XOXO

Transparent

Webster's dictionary defines transparent as: having the property of transmitting rays of light through its substance so that bodies situated beyond or behind can be distinctly seen. My friends, today, I feel transparent. I don't know any other way to explain it. I'm not quite sure what I would do without my sister-in-law Erin and my brother-in-law Jarrod. And, I'm not sure that I want to find out.

Daniel: is becoming incredibly thin (I think that we are 19 lbs lighter). I do not think that I have ever seen him this thin. He says that he was in college, I don't believe him. I hope that the next few weeks allow for some weight gain. He is starting to lose his hair, not ready to shave it, just yet. Maybe, it is just thinning, and not completely going to fall out. Appetite is okay, could be better, has had knee pain most of the day, still trying to be as strong as a rock, and he is doing a great job at it! I wish that Daniel would blog- never going to get him to do that! HA! I wish that he would let y'all in his world, tell you his side of the story. I would be interested to know that! I am sure that you guys would too. I really wish that I could give you his insight, but I can't. I honestly wish that we all could get a lot more out of him, but that is just, how he is! I on the other hand, am trying to lay it all out. Which, I must say, is not usually the way that I do things.

The girls are in town for a visit. They came by for a little while, tonight. My niece and nephew are here too. Those 5 smiling faces, sure made Daniel happy. How could 5 rowdy, full of energy, little individuals not make you happy. Mia, is 20 lbs strong, Ashlynn, looks like she has grown a foot, and Avery, she said "Daddy, me not want you to get sick again". What do you say to that?

The kids are here for the weekend, so I most likely, will be devoting my time and energy to them. I hear that there is a swimming pool that is begging to have some swimmers! The doctor made rounds this morning anf informed us that, if the bone marrow results are positive, then we could possibly be going home in 1.5 weeks. I don't want to rush things, but, I know how much Daniel wants to be in his own home, in his own bed, eating real food, and most of all, being with his children. This weekend, we will be doing a lot of waiting. I know that several people have been inquiring about having a bone marrow test performed- to check for a possible match for Daniel. I have not gotten all of my information together- but, I promise I will work on it (hopefully tomorrow). It isn't that complicated, but I want to make sure that I have the most accurate info. Until next time... XOXO

This Girl...

This girl... seriously, made me so proud today. I still am in disbelief that she is now a 1st grader! It just doesn't seem right. It doesn't seem right, that I attended her Kindergarten Graduation by myself (well with out Daniel). One year ago, he was able to attend her preschool graduation- but, it still isn't the same. I made it through... no tears! It was a a really cute program, and I want to give a special thanks to Mrs. Staffey for taking such good care of this little girl. She has had a pretty tough year- with the addition of her baby sister Mia and her daddy's sickness. Even with all of the adjustments- she still managed to EXCEL! This girl- she must get her "brain's" from her Daddy. She has it going on! Ask anyone, and they will tell you the same thing!

Short trip home. It was a good thing that dinner was taken care of by someone else. I don't think that I would of had the energy to fix a meal, or, actually plan one. Breakfast- pop-tarts baby! I know, not what I would normally feed my children- but it works. Right? The truth is, when I am at home, my kids pretty much get wahtever they want. I am mainly talking about food and clothing options. I hope that explains the wardrobe that Avery has been sporting. Today, she wore a Mizzou cheerleading uniform to graduation  and hot pink flip-flops. I really do not feel like putting up a fight with her. She is pretty stubborn.

Yesterday, we learned that Daniel's sister, Erin was not a perfect match for Daniel's bone marrow transplant. I got the phone call on my way home. I delivered  the news to Daniel, and he took it rather well. Today, we learned that Daniel had several "potential" matches. About an hour after that, we learned that there were several matches that seemed to be very good. So, they are looking in to the matches and will conduct further tests, to determine the best match. Of course, the transplant is still a little ways out- more like July! So, we are moving on. Bone marrow test went great. The doctor gave him so much pain medication that he did not feel it- Yeah!! Reinforcements arrived last night and today. Many thanks to Jessica and Brian for sitting with Daniel while I was gone. It sure makes me feel better to know that he was not by himself. Especially during the biopsy. Daniel is doing really good today. Looks good and still hanging on to the hair!

Tomorrow night, the girls arrive. I know that he is very excited to see their little faces. It has almost been 2 weeks! Long-time coming! It will cheer him up a bit. Not that he isn't cheerful, because this man, has the spirit. Some things have got to him- especially, when it comes to the girls. It is understandabe. I am so proud of him! I hear that the hall is wanting a walker...XOXO

Somebody's Praying, by Jim King

Taking Time to Breathe

Sorry, no post last night. We had some visitors throughout the day, and by early evening, I was extremely tired. I am not sure why, but I was. Anyway, yesterday was a much better day for Daniel. He went all day without the irritated nerve bothering him. Last night, he recieved both platelets and red blood cells. This morning, he woke up with the leg problem. It is not as bad as it was, but it is still there. So, they are continuing to treat it as a irritated nerve. Which, seems to be working. Daniel opted out of taking the meds yesterday for it, due to the fact that it wasn't bothering him. The doctors are not really concerned about it because there is not any inflamation or fever, which may indicate an infection. He is still doing really good- health wise. Tomorrow, he will have the bone marrow biopsy. Please say a few prayers for him tonight! Not only for good news to folow, but, for it to be a pain-free as it can be! Daniel says that he can feel the pain generate from his toes up and that it is excruciating.  He will be by himself for the first night since all of this started. Tonight, I will worry about him. Did he eat supper? Does he need something to drink? Many other questions, will flow through my mind. He will also be enduring the bone marrow test by himself. The last two tests, he has had either his father or myself with him. I know that it has to be comforting to have someone you love with you during those times. Anyway, be thinking about him today, tomorrow, and tonight.

I have a graduation party to attend tonight and a graduation tomorrow. I can't wait to share with everyone how that goes! Ashlynn is so excited!

Oh yeah, y'all need to zip on over to my facebook page and watch the video that Jim King put together. The video is a small glimpse at the benefit that given in Daniel and my family's honor last Friday night. If you have been keeping up with my blogs- you know what I am talking about! It is beautiful! It made that, now, 213 boy (Daniel), have some big ole tears. Really, many thanks to all that made that happen! I am planning on being home until tomorrow afternoon. We may have some preliminary test results on Friday, but they have told us to not expect them until Monday. I will not be here on Monday, due to the fact that I have some things to take care of. Until next time- XOXO.

Neither Black or White, Hot or Cold

Today I struggle with many things. I miss my children terribly, I miss my home, my bed (this cot just isn't the same), and I miss my husband. Even though I am here with him- I miss the real Daniel. The one that talks to me all evening, the one that goes places with me and the one that hugs me. Real soon, I hope to have all of those things back the way that they should be. When I was home over the weekend, a had my children constantly asking me to do things with them. While I tried my best to make it all happen, there were several times that I had to answer with "maybe next time", and "I don't know if we can do that", mostly because I didn't have the energy to do it or figure it out. They would get irritated with those answers, and I don't blame them. Looking back, it makes me angry that I didn't do those things. The normal Kristin is either black or white, hot or cold, and not grey or warm. Right now, I think that I am grey and warm. My life is not scheduled like it normally is. I am usually a pretty organized person, and right now, I am not organized. I am very aware that my life will be like this for a while, and it scares me. I am going to have to get used to it. I know that I should not be griping, because in the end, I can go home, see my children, sleep in my bed, and leave room 6937, at any time. Daniel, he has to stay in room 6937 for a little while longer. There is absolutley no griping coming from him.

I haven't seen much of Daniel awake today. He has pretty well slept the day away. This morning, he woke up in good spirits, and I was sure that we were going to have a day as good as yesterday, if not better. I was so sure of it! Boy, was I wrong. Around 9 a.m., he started to complain of a leg cramp. This leg cramp bothered him until about 2:00 p.m. That was when he finally asked for some pain medication. He really should have asked for it much sooner- but, he is pretty tough. Bring on the morphine and muscle relaxers! The doctor came in and he is pretty sure that it is a irritated nerve- most likely from the chemo. He is resting peacefully now. I know that he was in great pain! It saddens me to see him like that! There was absolutley nothing that I could do to make it better. I learned that I was better off to sit in my corner of the room, and not speak to him- just think about him! I love that boy!

Speaking of love, I still can not wrap my thoughts up about Friday night. Thank you to everyone that came out of the woodwork to support my husband and family. We will never forget that moment. My chest tightens each time that I think about how fortunate that we are to have all of you great folks that we call FRIENDS. We have so many old friends, new friends, and virtual friends, and each and everyone of you guys, are just as special and important to us! We still continue to recieve emails and cards daily (many), and each one offers hope and wisdom, that tomorrow, will be a better day. And if not tomorrow, the next day. Thank you. I can't say it enough! Thank you for the kind words, wisdom, prayers, inspiration, gentle nudges, when I see you, and most of all, thank you for your friendship. Thank you for being our friends- wether it be virtual, in spirit, or in person! XOXO

Twenty Thousand

My weekend home started off grand, let me tell you. Ashlynn and I arrived home around 9:00 p.m., Thursday night. She was inevitably tired from the zoo trip with her school mates and the drive home. It was incredibly hot, we did a lot of walking and keeping up with 14 kindergarteners- made for an exhausting day! She went straight to bed, and I followed, not far behind her. As I walked on "my side" of the bed, my socks became wet. I felt around the carpet, to find that about 1/4 of our carpet was wet, and mildewed. Great- huh? I guess that sometime during the storms, our window in the master bed room had a leak, and not a minor one. Thanks to Nick Robertson for saving me! He came right over and duct- taped my window up before it rained again!! With a couple of handy-men to the rescue (I feel bad that I don't know the one gentleman's name, but the other was Danny Burnett), my window is now fixed. My carpet had to be pulled up and dried out, and I bleached the heck out of the floor. Hopefully, when I venture home, later this week, the horrid smell will be gone! I have high hopes!

Friday, was a crazy day of getting haircuts and taking care of some other business. It was good. It was also the day of the fish fry that was held on behalf of Daniel and our lovely family. I admit, I was a little nervous going into the event. It seems like everyone wants to ask me "How are you doing". I always want to say- "Do you want the absolute truth, or the made-up answer?". My real answer to that question is- "How do you really think that I am doing?". But usually, I answer with the " Most of the time, I am good, but I have my moments". I am telling you- it is scripted-without a doubt. I am sorry that I give that answer, it is much easier. So, why was I nervous? Well, everyone wants to know about Daniel. He truly is a CHAMPION! I know that I say this everytime. Truthfully, his spirit, helps me. Me, by myself, I am pitiful. But, with Daniel, I am much stronger. We are stronger, together. Anyway, I am truly amazed at the love and support that was shown for us Friday Night. I know that there are many people that I never even got a chance to talk to- if you are oone of those, I am sorry. I tried.... There were so many people there! Unbelievable! I know that Daniel would have been so surprised. He couldn't get a hold of the guest book fast enough! I want to thank everyone that organized and worked the event, the contributers of the food, Pleasentview Baptist Church, and most importantly, the people that attended the event. Y'all know how to BRING IT! Seriously, I am so amazed at the magic that occured Friday night. Drum roll please.... $20,000 dollers were raised!

The kids... oh, how they needed their momma this weekend. Avery was like a leech in bed. Ashlynn, just needed her momma, and Mia, she needed to be rocked... quite often. I needed the weekend with my girls! Sure, we were incredibly busy... we also fit in a babyshower and a trip to Wal-Mart in the weekend. We were wicked busy, but, it was so nice. It is always tough for me to continually answer the question of "When is Daddy coming home". I still have not figured out the appropriate answer to that question. I am working on it. Home sure wasn't the same without Daniel. Maybe, it was a good thing that we weren't there much. The television wasn't even turned on. Packing the bags for the girls, was tough. I never dreamed that I would be in this situation, and I am trying to make it the most "normal" that it can be. Does that make sense? I battled a lot of melt downs from Avery this weekend, and I didn't have the energy to fight her. So, there was a lot of giving in to that child. Ashlynn, found a fish carcas (spelling?) in the fish tank. So, that was fun. She loves her animals. She is going to be a crazy cat lady some day- I promise. The fish were the relapcements to the many rabbits, that we couldn't keep alive. After 3, we decided that rabbits just weren't our thing. She had a major melt-down. By Saturday, my sleepless nights, non-existent appetite, and exhaustion had caught up to me. I had zero energy!

My drive to St.Louis was good. I was able to wind-down, catch my breath and relax a little.

Room 6937, still looks the same, smells the same, has a few more greeting cards added to it, and one thing missing- the chemo bag on his IV pole! Oh yeah! Daniel was walking laps when I reached the sixth floor. 13 Completed, today! He looks really good today. Before treatment, they told us that today, would be one of the worst days for him. Truthfully, he is stirring around better than I have seen him since before I left for NYC. He had a visit from a few good folks today and didn't even take a nap- today, was a good day! Thursday, is bone marrow biopsy day, so please continue to keep Daniel in your thoughts and prayers this week!

I have a graduation to attend on Thursday- Ashlynn's Kindergarten Graduation. Hard to believe- right? It sure doesn't seem right. I am sad that her Daddy will not be there to witness it. I most definitely will be videoing it for him to watch. Until tomorrow, XOXOXO from room 6937.

Wednesday, Day 6

I do a lot of sitting, checking emails, text messages, facebook messages, and mostly, watching Daniel sleep his tired body away. We are on day 6 of chemo. One more day to go. Do you know how hard it is to watch the father of your children be hooked up to chemo, 24 hours a day? It is pretty dang tough. I try really hard to be strong, and I think that I am being pretty successful, so far. Atleast, in front of Daniel. It is tough to sit in room 6937 all day long. When I leave, all that I can think about is Daniel, if he might be hungry, is he sick, does he need fresh water, has he walked... etc. Today I walked for about an hour by myself, trying to clear my mind. It just doesn't happen. The other purpose of my walk, was to find a health food store that several people have raved about. I didn't find it. I love health food stores. However, I found a great little bagel place- with some awesome unsweet tea. Bagel for lunch and a phone call to my best friend, helped out a whole lot!

Daniel, he is doing great with the chemo treatment. Besides the stomach problems, he is doing pretty darn good. He is pretty functional, except between the times of 10:00 a.m. and 2:00 p.m. He is ready to knock this week out. His main doctor made rounds this morning and told us that his blood work is where it needs to be with the treatment. Of course, the bone marrow test next week will give us a better idea where we stand. He also stated that the next 2 weeks are very critical to him. He will be prone to fevers, mouth sores and infections. So,
as much as I dread saying this, we hope to keep the visitors to a bare minimum. If you have
intentions of visiting, please let us know, so that we can assess the situation. There may be situations where visitors will not be allowed to enter the room. Of course, I am always up for a visit or two. Visits may have to occur in the family room or somewhere else. I hope that this does not upset anyone. Please understand. The less complications that we have, the sooner Daniel's immune system will improve

Tommorrow, Ashlynn will be venturing up her with the school for a field trip to the Zoo. I wlll be joining them. Afterwards, I am bringing her by the hospital to visit her Daddy. Guess what? Ashlynn and I are headed home afterwards. I am a little nervous. Nervous to leave Daniel, nervous to have all 3 kids by myself, in an empty house, nervous to sleep in my bed without my husband there, and nervous about being able to stay strong! I know that it is a much needed trip, both for my sanity, and the need for my children to have their mommy close by.

Oh yeah, I have been notified that there is a Fish Fry (benefit type thing) for our sweet family at Pleasentview General Baptist Church in Risco, begining at 4:30 p.m. on Friday May 13. I am so astonished and moved by the support that so many individuals have shown for my family. I really am. I plan on being in attendance with my children. I can't wait to see everyone! I hear that it is supposed to be a well attended event! Since I am travelling home for the weekend, there may not be many blog updates, if any at all. I plan on devoting every single ounce of my time to rocking my sweet Mia, playing dress-up, painting fingernails, and taking care of some household things. There should not be much change in Daniel. If there is, there may be a short post. I plan on returning Sunday afternoon. Until then, please continue to keep our family in your thoughts and prayers. XOXO

Technology = Awesome

I am getting to know this hospital pretty good. I am getting to know the employees, and what I would call, "the residents" here. Sounds kind of bad, but, alot of the people on the sixth floor, have either been here a while, or will be here a while. I am so amused by these people. I have been mingeling with many of these folks- imaging that? I thoroughly enjoy getting to know people. The residents here, have offered their knowledge. I am the newby around here. Most of these folks- they know the ropes. They are interesting. They gossip- man, do they gossip. So funny. I find laughter in these people. I am not laughing at them, by any means. There is the man that I call "Cowboy". He, walks around this hall, like it is no-one's business. He wears a cowboy hat, black suit jacket, and nike shorts. Cracks me up. You know what- he is happy! Then there is Negative Nancy (that it what I call her). She, like many of the other people here, have no family that stays with them, let alone, visits them. I feel for these people! Anyway, back to Negative Nancy.She has told me that Vince (????), gives the best bone marrow biopsy. I find it a little ironic to think that any bone marrow biopsy could be good. Apparently, the chicks around here do not know what they are doing. That too, is according to Nancy. Today, I was walking back from dinner with some of those "soul sistahs" that I was telling you about. You know, the ones that know how to "bring it", in times of need. Nancy, asked me if I smoked cigarettes. Anyone who knows me, knows that, I am the last person to ask about cigarettes! I kindly told her no, and that I was sorry. She yelled, "I need a cigarette". I walked past her, in a hurry. I served Daniel his supper and called my mom, down in the family room, at the end of the hall. As I was in there, Nancy came down and sat beside me. After I did not abruptly end my conversation, she got up, rearranged the room and went to the snack machine. All of the sudden, I hear "You have got to be sh***-n me". (I hope that I didn't offend anyone). The machine had taken her money and she didn't recieve her cheetos. You could tell that she was pretty upset. This lady means business. I was so concerned. So, for the coming days, I have two goals: 1. Learn these people's real names, and 2. Share our abundance of snacks. Maybe, it might bring some cheer to their lives.

Technology- I consider myself to be a pretty technological savvy person. Not a genious, but I can usually figure it out. I have heard so much about Skype, but never done it. My friends, skype= AWESOME! We got to skype with our children today. You see, the last few good night calls have been pretty tough on our children, and us. Lots of crying involved. My awesome sister in law, proposed that we communicate after school and day care. She thought that may the transition may be easier on the girls. We love it! They love it! Thank you to the creators of Skype! And, Microsoft, for purchasing it!

Today, started out not so well for Daniel. At 3 a.m., I woke up to him vomiting, which caused a nose bleed that wouldn't cease, which inevitably, ended up to a platelet transfusuion. By 1:00 p.m., we were doing much better. Daniel has slept a lot today, and that is okay. He ate dinner pretty good. He also recieved 2 bags of  red blood cells- another normal thing. He is still infection- free. I look at him, and he doesn't look like the other people on this floor. He amazes me each and every day. No complaints. I look at him, and can not believe that he is on chemo. You really can't tell! I have always heard so many horror stories. I am so proud that he chose me, to be his wife! Oh yeah, He says that he is going to get up and walk when I finish this. Maybe, I should hurry?

Okay, I think that I have written enough for the night. I know that there is not much change. We are still waiting. We are doing a whole lot of that right now! I want to let you know that Erin (my sister-in-law), has recieved information from the bone marrow registry. Her sample should be completed this week. Results, should take 2-3 weeks. Please pray for a good outcome. Good night! XOXO

Soul Sistahs!

Last night, I had two of my close friends visit Daniel and I. I was the first one out of what you would call my "main group" of friends to get married and start a family. Daniel and i met in college. He lived in cape girardeau Missouri during the school year, and i lived in Advance (my home town), with my mother. See most of you don't know this, but, I'm really a Texas girl- born and raises for 15 Years. League city Texas is my real hometown. Back to my story.... When I moved to advance, my freshman year in high school, i never really fit in with my graduating class. They had already established friendships of their own.the first real friend that i had would soon introduce me to her sister- Stephanie, whom I would consider my best friend, she is amazing! Her family, is seriously, my 2nd family. We celebrate many holidays together. Her brother and sisters and their family, well, they might as well be my siblings. I see stephanie and her boys more than I see any other people from my hometown. I also have, another group of friends, and these gals, know who they are. Although, we may not get together often, we still have that connection! We all pretty much have families of our own these days, and we are situated throughout all of southeast Missouri. One thing about these girls- they know how to bring it! I had a nice visit with 2 of them last night and today. It was so nice! We reminisced about the good ole' days, our families, and other girlie stuff. Stephanie came for a visit today. I appreciate all of the smiles that were brought to my face- I need them. There is nothing like love from your your best gal friends.

When Daniel and i got married, i had never lived away from "home". Daniel had moved us to, what I thought at the time was a "barely there" town in the southern most part of the state called Risco, Missouri. I was so lost. Daniel worked all of the time, at the very beginning, I commuted 90 minutes to work, and 90 minutes home from work. I thought about going back home so many times, because, I didn't know any one and had not one friend. You know what? Love is what kept me there. There was so much love in our house, and there still is. Now back to that little town of Risco, I wouldn't trade living there for anything, even before any of this stuff happened. The outpouring of love for my family from this town is absolutely
unbelievable.

To the part that most of you are wondering about: Daniel. Today, he is coming around! His appetite, it's coming around. No vomiting, fever, anything like that. I have been soaking up
every single ray of his energy. 3 more days of chemo. No more weight loss. Today, he walked 15 laps. 13 equal a mile. Much better than the 0-4 we have been doing. Today, I consider a success.

I want you to know that we received about 75 emails today! Keep those coming! We love mail. We area doing a lot of waiting, a lot of of sitting, a lot of thinking, and a whole lot of praying. I ask for strength and wisdom. I also give a lot of thanks, because we have a whole lot of things to be thankful for- right? I am also trying to remember that when things seem really far out of reach, You have to reach really far for them. Good night, my friends. XOXO

Mothers Day

From as far back as i remember, I wanted nothing more than to be a wife and have lots of children. I'm every bit serious. I dreamed of pushing a stroller in the park and having a tree house full of children of my own. Ask any of my friends and they would tell you that it is so true! I look at all three of my children and i am so prud to be their mommy.

Ashlynn, she is brilliant, beautiful and the red head that i always dreamed of. Most people would cringe at the thought of red hair, but I dreamed of having at least one red headed baby! Sensitive, she is. She is my helper. She is an excellent momma to her baby dolls, stuffed animals, and real animals. Anyone that personally knows her, knows how true that statement is. She is genuine. The best thing about her- she made me a momma!

Avery.This kid is seriously, the funniest child i know. She, too, is beautiful. She has a heart of gold. Sure, she is fiesty at times. She is definitely the middle child. She loves the color purple, and clothes that don't match. Sometimes, she will let me fix her hair. But most of the time, she wants to fix her hair herself. WIT- That girl has it. Most of the time, compromise works best with Avery. She has 5 Boyfriends. If you ask her who her favorite one is- she will tell you her daddy.

Mia. She turned 8 months old yesterday. She is pulling up and getting teeth in like crazy. I think that she might be our most stubborn one! Are still getting to know her. I think that she may be a little shy. Her blue eyes- I could just gaze at them all day long. She is our final child! She will always be the baby.

This mothers day has been wonderful, given the situation that we have been put in. My sister-in- law and brother-in-law brought all 3 children up! We saw them Friday night, had a little trip to the zoo yesterday, and mia left early this morning. Ashlynn went to the cardinals ball game with my nephew and brother-in- law, and I spent most of the day with Avery all by herself. It was nice. They have all gone back home and it saddens me greatly. My sister- in-law, she is the glue for my family right now. She is keeping us together. So much thanks to her. She is a phenomenal mother, and my children think pretty highly of her. It makes it easier to know that my children are in good hands. My mother was here too. It was nice to get to enjoy the day with her too. She has been a huge help with the caring and nurturing of our children since this process began.

As for Daniel, well we have almost completed day 4 of chemo. 3 more to go. It is a waiting game. He is doing fairly good. He sleeps most of the day, and is pretty sick to his stomach most of the day. I am trying to get to eat, but Nothing tastes good and the aromas of most foods make him want to vomit. Temperature is still down. He really doesn't say much, at all. I know that he feels horrible. Complaining- well that isn't his nature! I am pushing him!

I feel like a pretty crummy mother right now. I know that my children need me. I also know that Daniel needs me. He needs help with getting nourishment, he needs help getting bathed (his toiletries together), he needs his bed sheets changed, and a whole list of other things. I know his mom and dad are very willing to help, but, I think that he is more comfortable with me taking care of it all. Let me tell you hit best thing about Daniel, he is the best husband you could ever ask for! He has made my dream come true- he made me a wife and we made those 3 beautiful girls together!

When i was talking to my executive director, Karen, last week, she told me that taking care of the girls' daddy, is being the best mother that is part of being one of the best mothers that i can be right now. I am trying to hang on to that thought. She is a brilliant woman herself! I have learned so many life skills and parenting skills from her!

The whole group of women and men that i work with are seriously, the best that one could ever dream of working with. They are a great group of individuals. These people, believe in you, push you to be your best, and most importantly, let you know how special you are!

So,on this mothers day, i want to wish each and every one of the many mothers out there- the best mothers day. Thank you from the very bottom of my heart for all of the kindness, and generosity that you all of shown to my family in the last week. Please keep the Presley family in you prayers, as we continue alone this journey. Xoxoxo

Chemo.1

Alright, this blog finally has some beaUtiful color to it! I have a better picture, I just have not saved it. It has my leukemia warrior in it! Maybe, tomorrow, that will appear. Look at these kids, seriously, are they not the sweetest? Maybe, I am just partial!

Chemo, day one has been a challenge. Daniel has been pretty ill. Moslty nausea and light headedness. His blood pressure has been a little low, but all of these things are to be expected. Most likely, he will recieve blood tomorrow- another normal thing. As a matter of fact, this will probably happen every- other- day. Blood makes him feel better! All in all, he is doing good. He is sitting right next to me in a chair. This is pretty much the first time that he has gotten out of bed all day! He went for a little walk. I cheered him on. So did the nurses. Everyone tells me that the first month is the roughest part of this disease. They also say that the bone marrow transplant is tough. This guy is a fighter!

Today, I have heard about 2 different people that have the exact same disease that he does. Guess what? They live perfectly normal lives! So, there is my inspiration for the day! Those two gentleman! I strongly have faith in the remission of this disease. Well, I am going to get this man a shower while he has the energy. Until later, good night! I really do not know how much I will blog this weekend. I plan to devote my time to the enjoyment of the girls. I hope that you followers understand! We just recieved th ephone call that they ar ein the lobby. My stomach just dropped. You have no idea how much I miss those sweet faces!

Acceptance

I am tired. I can't sleep. My stomach hurts, so I find it impossible to eat. I escape to cry. I cry and cry. Why is this happening to me? Why is this happening to Daniel? Why is this happening to our family? I will never know the answers. I am trying very hard to accept this. Today i meet with social workers to discuss routes to deliver the news to those 2 precious girls. I say 2, because Mia wouldn't understand. I have no idea how I am going to tell Ashlynn and Avery that their daddy is Very sick. Will they understand? How many questions are they going to ask? How am i going to stay strong during the conversation? Daniel has no idea that this is going to occur. I will leave the room and have the meeting. I sit here staring at him. He is so sick today. Mostly nauseous. The fever, oh the fever! Daniel has a mild lung infection. So, they have put him on antibiotics. He is sleeping a lot today. We are supposed to walk 3 miles a day, in order to keep him in good health. He can't even get out of bed. I am so lifeless. I lack motivation. Daniel has a good medical team, and nurses. We have been told that his doctor is the leukemia wizard- one of the best in the nation! Oh yeah, Barnes Jewish Hospital is the best leukemia hospital in the nation! How's that? We are so glad to be here, but can't wait to get through this. Daniel keeps telling me that everything is going to be just fine. How can i be the best mom that I can be in his moment? The truth is, I can't. I don't have it together, I am a total mess! Have a blessed day my friends!

Continued....

Daniel was supposed to start his chemo at around 9 p.m. Last night. Around 8 p.m., the doctor walked in and delivered more news. Daniel's final diagnoses is Acute biphenotipic Leukemia. Daniel's cancer is both ALL and AML. This hospital only sees about 5 patients per year with this diagnosis. It is very rare. More heartbreaking news! Treatment protocols are basically the same, except that there are different meds involved. They tell us that the meds are less straining on his system. It is still very important that he go into remission and immediately have the bone marrow transplant. I'm not reading anything about this cancer, because, frankly, I don't want to know. It is around 3 a.m. And Daniel is sleeping good. I'm not. He has spiked a fever. We did get to start chemo around 10 p.m. Last night. Back to the fever, the nurse will be back in in a half an hour to re-check it. If it is still high, then blood samples will be drawn. I'm so sick right now, my heart is aching, my friends. Please, i am begging you, keep Daniel in your prayers!

Sometimes, Things Don't Go As Planned

Today, brings new beginnings. I wish that I could say that we have better news, the truth is, our news may not be better. around 12 p.m., the doctor entered the room to tell us that Daniel does not qualify for the study, we once thought that he would. Daniel's genetic mutation that is causing the problem is the Philadelphia chromosome. I want you to know that i am trying to explain this in a way that most people will understand, so bare with ne. The Philadelphia chromosome issue means that without a bone marrow transplant, Daniel's remission will not be successful. Tonight, we start chemotherapy. I am not sure how many rounds daniel will undergo before the bone marrow transplant can take place. The first person that I'll be given the shot at a possible match for Daniel is his sister Erin. She is very much excited about the chance to help him out. As a matter of fact, the paper work will be sent in tomorrow to get this started. If she is a match- great! If not, they will go to what they call a "mud bank", to look for possible matches. Sometimes, there will be a match. If there is not one there, than other routes to identify matches will be discussed.

On another note, we are excited to begin the chemo tonight. It seems like this is a huge waiting game. We are learning how important patience can be. Daniel has had a lot of visitors in the past few days. He has enjoyed each and every person who has stopped in. We are so touched! Today, his blood pressure has been low, and he tires easily. Other than that, he still enjoys pestering the nurses, especially the ones that he really likes! No fever, just tired! His first round of chemo will last 4 days. His side effects should be pretty mild. Most likely nausea and body aches. But, there are great meds out there that will help with any that should occur.

It is truly starting to sink in that our life is forever changed. Daniel will never be completely cured of this disease. He will always be in remission. There will always be dr appointments to attend, St. Louis will forever be a part of our lives. How do you tell your children this? I am struggling with that question more than anything. If someone can for me any suggestions, please, I am begging you! Daniel has such positive energy. He believes that if there is 1% chance of survival- he has a chance and that he is that 1%) We all know that he will beat this disease! it is just going to take time. I can't wait to get him home. Oh yeah, you know that trip that I was going to make home this weekend? The girls are actually coming up to see us! We can't wait to wrap our hands around those girls. Daniel will not be able to- because of the chemo treatment. Please continue to think about us, as our road ahead could be a little curvy at times. All i can say is, bring it on leukemia!

On Friendship, and What it Means to be There

Let me begin with an update on Daniel. Today, we learned of the diagnosis. Today, we learned of the possible treatment that he would undergo. Today, we hoped to start treatment. We also figured out how frustrating the waiting game can be. Shortly before lunch, we learned that Daniel would need to have another bone marrow biopsy because in order to be involved in the clinical trial that I spoke about earlier, he would need to have some samples sent to San Diego. I don't know if you know this, or not, but bone marrow biopsies are HORRIBLE! So, this was another hoop that we would have to jump. The samples would need to be sent by 5 pm today. Anyway, we met with several doctors,asked numerous questions, and signed all of the paperwork to seal the deal. This sample was much easier for Daniel because the doctor provided sedatives for him. Luckily, he doesn't remember much. We have found more information out about our new friend- ALL. This type of cancer can effect the CNS( central Nervous System- brain and spinal cord), so, Daniel will also be receiving treatment in his spinal cord.

So many people are asking how Daniel feels. I can tell you this. His blood levels look better, however, he is recording a tremendous amount of antibiotics. He is fever-free, for now. I am making that man EAT, yes, we area trying to pump him up for this battle! Tonight, he had lost 7 lbs since yesterday. Probably mostly water weight. He was not allowed to eat most of the day. He misses his children. My friends, this man is incredible. He has NEVER complained. He walked 2.5 times around his floor, today. Given what he went through, I think that today was a good day. I am very aware that we will have good days and bad days.

On to the title of my blog entry. I am amazed at how many people have showed up to visit us, how many emails have been sent, how many phone calls made, text messages sent, Facebook comments, messages, and friend requests made, and how many people are following our journey through my blog. I am amazed at how many prayer chains Daniel is on. Seriously, the man has churches all over the USA praying for him- amazing! I also am amazed at how many individuals are praying. I want to thank each and everyone of you. I know that there are many people I honestly don't know, and probably will never meet thinking about us! If you have even given one thought about our family- thank you!anyone who truly knows me, knows that i am a giver- not a taker. And in this moment, I feel like a taker. There are so many phone calls, text messages, emails... Etc, that I have not returned, and I truly apologize. I am trying! I try to spend my spare time sitting on the edge of Daniel's bed comforting him, supporting him, and most importantly, loving him. Right now, I am writing this as I watch him sleep.

In closing, i want to tell everyone from the bottom of my heart that I truly thank each and everyone of you! Even if you have not done any of the above things, if you have just given us one thought- thank you! Oh yeah, Daniel enjoys getting emails- you can visit the hospital website(Barnes Jewish Hospital) and somewhere there is a patient email spot. He reads each and everyone that he recieves! He also periodically checks Facebook- my page, that is. He's never been the real technology savvy person(hence the reason he doesn't have his own). Hopefully we will start treatment tomorrow!

Change

After staying up to 10:30 p.m., waiting on the doctor to deliver the preliminary results of Daniel's bone marrow biopsy. Needless to say, the doctor never showed. Every morning, as soon as i wake up, I head down to the 5th floor to take a shower. You see, there is only one shower for 6 floors- so you can imagine what it is like to share a shower with the other family members in this building! Anyway, wouldn't you know that as soon as i left, the doctor came.

So, to the results.... There has been a change in the diagnosis. New details point toward Acute Lymphoblastic Leukemia. The doctor stated that this type has the same severity's what we first thought he had. This type of cancer has an 80% cure rate in youn children, without bone marrow. In older adults, it has a 40% cure rate. Now, these rates are not with a bone marrow transplant. That is always an option, given that treatment does not work.

Treatment is still yet to be determined. Since Daniel does not really fit either of the categories mentioned above, he will become part of a clinical trial. I'm not really sure what to think about this- but it is, what it is. This study, is with young adults up to age 35. He will be given the children's dosage of chemo. Apparently, children can take really strong dosages of chemo and have successful outcomes. Treatment may start today, but no later than tomorrow. They are still studying the sample to determine what treatment he will have. We want the right treatment!

My stomach is still lurching inside. I miss my children, and i know that for Daniel, being away from his babies is the hardest thin right now. Our 3 little ones miss both of us terribly. Ashlynn (our 5 year old) and Avery (our 3 year old) have some idea that theri daddy is sick, but they have no idea to what extent. As i am typing this, i delete words, and then i type again, trying to find the right words to explain what has happened, what has happened to our family, and most importantly, what has happened to Daniel. Please, if you see my children, hug them, kiss them, let them know that they are special. Mia (our almost 8 month
old) is so lost. She has no idea what is going on. We would love that. I am trying to plan a short trip home this week to visit them. More than anything, I am trying to be the best mom that I can be. It is tough! Thank you to everyone who has offered their help, kind words, and prayers. Daniel is going to win this battle. I am going to close with a quote that I found: courage is the discovery that you may not win, and trying when you know that you can lose- Tom Krause.

On Leukemia

Our journey begins April 1st (I believe). Daniel had been doing some yard work and Began to complain of his calf muscle hurting. After 2 weeks,I begged him to go to my Family practitioner, who I believe is great. He decided to try a local doctor and received some Mede and was sent on his way. Shortly after the pain resided... his back and chest began to be sore. Again, he was stubborn. Within the last two weeks he began to complain of shortness of breath. I had planned a trip to New York City with one of my very good friends. Other than work related trips, this would be my first ever trip away from my family. I was completely worried as to how Daniel was going to handle me being gone for almost 6 days. But anyone who knows the dynamics of our family, knows that Daniel is an excellent father to his 3 baby girls! I had the clothes organized and ironed and I knew that on Thursday my mother would be there to help, not to mention that I have a wonderful set of in-laws who help out as well.

Tuesday morning, I hurried out the door, as I do most mornings, and hugged and kissed Daniel and the girls good-bye. This was the last time that I would see them until Sunday because I was flying out early Wednesday. At this point, he thought that he probably had an ear infection. Thursday morning, he decided that he was I'll enough that he should go to the doctor. He had an appointment at 9 a.m. He mentioned that he was going to ask for a full blood work up (you see, we are pretty health conscious people), as he wanted to check his cholesterol and other stuff. He was diagnosed with strep throat, and his blood levels seemed way out of whack. He was told to come back in 2 weeks. So, home he went. He couldn't get out of bed and passed out a few times during the next 2 days. Saturday afternoon, he decided with the help of his sister (she always has a good intuition) that he should maybe go to the emergency room. His mom loaded him up and off he was! Meantime, Lana and I were wrapping up our New stork adventure (I'll be posting pictures of the trip later). It was in the Southeast Hospital emergency room our life completely changed. Daniel, my husband, my solid rock, the man that for me, was love at first sight, was diagnosed with leukemia. As you can imagine, I was numb, crushed and more than anything, I wanted to be with him. I know that he needed me. Can you imagine what it is like to be that far away, and not be able to get home for around 12 hours? I was breathless! Daniel was then on his way to Barnes Jewish Hospital via ambulance. I boarded a plane at 7 am (New York time).

They did a variety of tests, of which it was confirmed, he has Acute Myeloid Leukemia. I admit, I still feel like I am sitting in the dark, waiting on the numbness and edginess to wear off. It still hasn't. Tears come and go, constantly. Daniel had his bone marrow biopsy yesterday. As I write this, we are waiting on the dr to come by and deliver the preliminary test results. Other results will be available in 2 weeks. My stomach is just churning. For all of you wondering, I have been checking my blood pressure, and it is ok. I still can't find words, and I am trying to update everyone. I want to thank all of our incredible friends and family who send basket after basket of goodies for us and our family, trying to make us smile. I am struggling with words, especially with Daniel, and i am quickly learning that maybe, I'm serving him better by not saying anything at all. I will continue to update this pretty little blog as often as I can. Maybe, this will be easier. I promise, it will get prettier- the blog that is! I will be posting pictures of our family and our trip- maybe that will brighten it up! If I can ask anything of anybody- pray, I'm trying, but I am numb and vacant! But today, I humbly ask you to pray for Daniel. Please help me and our family! Lift him in prayer. Today, I ask for your words.