{A Update... Well, Kind Of}

There are a lot of people who have been waiting on news on Daniel. I have ignored phone calls, texts... I am sorry. The girls were in town- please understand. Since I last wrote, I can tell you this: Daniel's last bone marrow biopsy came back "clean"- which basically means that there was no sign of cancer, this chemo treatment- began good, has turned out vicious, he has a fever, which means- infection of some sort, he is incredibly tired, had no energy for our children, and hasn't eaten anything brag worthy since Friday. 

I wish that things were better for him! I keep telling myself that in the end- this will all be worth it! We are starting to learn more about the process of his transplant. I am going to share more about it- because, I am sure, you want to know. Daniel's donor, will complete his donation on Wednesday. There will be a courier assigned to his blood. The hospital will be given two flight times- in case it doesn't make the first flight. Once in St. Louis, the lab at the hospital will administer final testing. His nurse that night, will be given a 30 minute notice. Most likely, the transplant will occur in the evening. Daniel, probably, will sleep through it (due to the drugs administered before and during then procedure). The transplant, will only take 30 minutes- 1 hour. Crazy! Daniel will feel pretty well that evening, and the next day. After that, he will most likely be pretty ill (they compare it to having the flu?). I have never had the flu... So, I have nothing to base it on!  Interesting facts about his transplant: his blood type will change, if his donor is a different type, his eye color could change ( to the same as his donor), and he will most likely, develop some or all of the allergies that his donor inhibits. most people, celebrate transplant day, much like a 2nd birthday- complete with cake and ice cream and party goodies. Because, it really is like having another birthday! Daniel will have new blood, and will become his donor- to some extent. I am still trying to figure out if we will celebrate this year. Daniel isn't crazy about celebrating anything about himself? What do you think?

I am so glad the girls came up for the weekend. They relieved some of the stress. Lately, I do a lot of thinking, a lot of staring a lot of walking around in a daze. When you are at the hospital, it is pretty easy. I hope that the brutal chemo treatments, the weight loss, the 3 months of Daniel not feeling like himself (feeling incredibly ill and tired most days), the bone marrow transplant... The 70 days in the hospital (approximate), the month living in St. Louis, I hope that it is all worth it! The worry the stress, the complete chaos of it all (when you have 3 very young children- it is so incredibly hard), I hope that it is all worth it! Sometimes, I hate to tell you all how it really is, because, I know that he reads most of my blogs. Of course, when I am not around! But, he is so strong, so positive, and to tell you that I have moments, where I fall a part, I feel so stupid. I am  usually the one who rises to the occasion, the one who is ready for a challenge, and today, I feel somewhat, like a victim! I'm sorry, because, I am most definitely, not the victim.

I wish that I could upload pictures from my iPad! If there is a way, I can't figure it out. If any of you techies, know, please feel free to inform me. When I get home, I seriously, lack the time to upload anything! Look for an update on transplant day! I am headed home for one day- I have a pesky dentist appointment. I will be back Tuesday, for an indefinite amount of time. It all depends on the situation. Until next time... XOXO Kristin 

{Settling In}

Today begins Daniel's 1st day of his last round of chemo. Round 3 of 3. Hopefully, this is it! This round, is supposed to be a brutal protocol. Seven days worth of chemo. August 3, Daniel receives his bone marrow transplant. The marrow, is being donated by a 32 year old male, from another country. It will be donated the same day Daniel receives it. As mentioned in earlier posts, Daniel's disease has a 100% chance of returning, if, a transplant does not occur. The type of chemotherapy protocol that daniel will be receiving will completely wipe his immune system out, completely wipe his bone marrow out (where your blood cells are made), so, it is important that he receive the marrow from an unrelated donor. Basically, he is receiving someone else's immune system, because his body, could never refurbish his immune system on it's own. The weeks following the transplant, should be the worst. As the Nurse Practitioner said today, Daniel "should feel like he was hit by a train". Interpret it, the way you want to.

This has been a long road. A long road for him. A long road for us and the rest of the family. Our family unit has never been stronger. As I have mentioned before, sometimes, we have wanted to fight this fight for Daniel. However, it has become apparent, that there is no other person healthier, stronger, wittier, than Daniel. Daniel has COURAGE. More than any other person I know. He has showed us all, that he can fight this fight much better than any of us. What we can do, is offer the following: love, support, strength, and prayers.

Looking back to the initial diagnosis, I can remember every aching aspect of it. I remember receiving the initial phone call, while in NYC. I honestly believe that Daniel had a gut feeling that something was terribly wrong, prior to that day. I knew. As a matter of fact, on Friday, I called my Executive Director, and asked to take a sick day on Monday. I knew, in my heart, there was something not right. Daniel was diagnosed on Saturday. From NYC to St. Louis, I couldn't get there fast enough. 1st flight out, the next morning, seemed like eternity. 

Upon seeing him for the first time, I will never forget the conversations that soon followed. The conversations that took place in the following days, weeks, and months. There was a whole lot of crying, praying, and wondering. Wondering- where do we go from here? What are we going to do? How are we going to do it? Because, at 29 years old, these type of things are not in the plan, yet.

Leukemia.

Through all of his treatments, Daniel has not complained. 42 days and counting in the hospital, no complaints. Having to stay indoors for the entire summer, watching his crops grow, from the truck window, staying indoors, while everyone else is outdoors, not being able to swim with his children, not being able to go into public places, taking 7-10 antibiotics daily, blood transfusions, platelet transfusions, blood draws (sometimes 22 tubes at a time), numerous trips to St. Louis, 2-3 weekly trips to the infusion center in Cape Girardeau, Missouri, for labs and antibiotics (4-8 hours at a time), 5 bone marrow biopsies, 3 minor surgeries, NOT ONE SINGLE COMPLAINT?

The truth is- our world has never been the same since April 29, 2011. Since April 29, we have constantly worried about fevers, infections, illnesses, blood counts...

Anytime the physicians, nurse  practioners, nurses, have given him his next treatment plans, course of action, protocols, he has taken the information with such grace. Ready. There is no other word that I would pick to describe Daniel other than, BRAVE!

As I have mentioned in the past, our family is incredibly grateful! We are so grateful for all of the cards, emails, words of encouragement, and love you have shown our children. Thank you for everyone who has helped us "get through" this.  From the very bottom of our hearts, thank you. The next weeks are very crucial for Daniel, so please, be thinking about him, and .praying for him. On a side note, he is in 5906, for anyone wanting to send an email, card, etc. Thanks for all of you following our journey. XOXO Kristin 

In the Presley House...

In the Presley house, we do a lot of things: we do family, we do "I Love You", we do hugs and kisses, we do grace, we do "I'm sorry", we do please and thank you, we do love, we do supper time at the table, we do mistakes, we do faith, and we do life. I am positive that most households are very much the same. one thing that I have always said is that I want my girls to grow up, become respectable individuals, responsible adults, and always, do what the "right" thing is. Yesterday, I was tested. The girls and I decided that we would do a little shopping. I know that most salespeople see me walking in and think... "that lady needs one more". Yeah, we have all said about someone before! Anyway, into the boutique we went. Wouldn't you know, Avery would make things complicated! Avery decided that she would shoplift a rubber bracelet. We got out to the car, I was buckling her into her booster seat and I noticed that she had one extra ankle bracelet- one that wasn't ours. So, I took her back into the store and made her forfeit it, tell them how very sorry I was, and stumble out, embarrassed. The bracelet was hot pink and said "brewsky babe". In the Presley house... we do second chances!

We are counting down the days until Daniel is readmitted into the hospital. We are trying to live them to the fullest. Friday, after receiving blood, Daniel spiked a fever. Sometimes, he spikes fevers after receiving blood. This fever, it has decided to stick around. Fevers are never good- with Daniel!  The physician on call had order him a prescription, but the fever, is still here. Looks like we will either be visiting the doctor in the morning, or making a trip to St. Louis to be admitted early!  I will admit, as the day draws nearer to transplant day, I am getting more anxious, nervous, worried... You name it. We have already had our world flipped upside down!   I have finally gotten the kids back to somewhat-normal, and now, it's time to go back to a life of craziness! I have said this many times... I am scared. I dread being alone, dread leaving him in St. Louis, and I dread leaving my children for days at a time. We will never know why we have been put in this situation, but, I can tell you that we have learned so much, so far. We have learned to love each other- in ways that we never have. And that, I am grateful for. I try to stay positive... Believe me! I do. I am ready for Daniel to be better. People who get to live normal lives, have no idea. When I go places, and see families, or daddy's with their children, it makes me sad, very sad. I want so badly, for Daniel to be able to go places, have the energy to care for his children, and be healthy. Beginning next Monday, Daniel will be in St. Louis for atleast two months. Please continue to keep our entire family in your prayers! Xoxo, Kristin 

{A Friendly Little Reminder...}



Here are a few things that the Presley's are doing these days...

HOUSTON...we are walking

Enjoying our fashionistas (this is really how Avery dresses these days. NO JOKE!)



Some hangin' out

Soaking up these little rays of sunshine!

Doing some swimmin'

And some skatin'

Reminder: There will be a Bone Marrow Drive tomorrow, July 12th, from 3 :00 p.m.- 7:00 p.m., at the Pleasent View General Baptist Church, in Risco Missouri. Please join the Be The Match Organization in donating a "swab" sample from your cheek. You never know- that swab could enter some valuable information into their banking system, that one day, could save a person's life. We are so thankful for this organization. Without them, Daniel may be facing very different circumstances with his disease! It is such a pain-less procedure! Somewhere, sometime, you may be the best "match" for a person in need of a bone marrow transplant! Please, DO IT FOR DANIEL!

Love Is All You Need

Love Is All You Need

Whew... We have been so entirely busy since we arrived home last Saturday! We celebrated a very wonderful 4th of July, celebrating both the actual holiday (oh, is it ever important), and celebrating my 29th birthday. This particular holiday is always full of good food, good times, fireworks, and a fabulous family. That is how we like it at our house. 

Besides all of that fun, tomorrow, Daniel will make his 3rd appointment in Cape Girardeau this week. He has had 2 lab appointments, and a doctors appointment with his oncologist in Cape. When we found out about all of the appointments that Daniel was going to make both now, and in the future, we asked if there was any chance that some of this could be done closer. There is actually a physician in Cape that completed his "fellowship" at Barnes Jewish in Oncology. With that being said, he is very familiar with Bone Marrow Transplant patients. So, his primary physician, Dr. DiPersio is comfortable with Daniel attending some check-ups locally. Score for us! We met Dr. James Moseley on Wednesday. And for once, Daniel's disease was finally fully explained to us. We are very impressed with this physician. We were also reminded  that Dr. DiPersio is one of the leading leukemia doctors in the world. We thank God everyday that Daniel is under his care. Although, this process can be gut-wrenching at times, hearing these sort of things tends to ease the pain, for a little bit. 

We are gearing up for the transplant. Getting our house in order, things of that sort. The 2011-2012 school year is quickly approaching which means that both Ashlynn and I will be gearing up. Things around our house are going to be crazy, real soon. With Daniel in St. Louis, I plan on staying home through the week (Monday- Thursday). As much as I dread leaving Daniel through the week, it simply seems like the most sensible option, at the time. I have to remember, that I am a wife, but, that I am also a mother. And until now, I have been able to juggle both titles, pretty well. In my absence at the hospital, my mother in law will be fulfilling her duties as Daniel's mother. I am so grateful to be a part of this family. As I have mentioned in past blogs, I am so blessed to have a phenomenal sister-in-law, who I would call a "reinforcement". She sweeps my kiddos up into her arms and treats them as if they were her very own. I'm afraid to think about how life would be without her. It has made this whole situation "do-able". Many of you have no clue how much Daniel helps with the girls. So, when he is absent from our house, life is crazy. I am scared, and I admit it!

Okay... For the update. As we are finding out- nothing ever goes as planned. We received a phone call mid-week notifying us that Daniel's donor has requested that the transplant take place a week later, than first anticipated. Now, Daniel will check-in on July 26, begin treatment, and be transplanted on August 3. 

Family pictures next week- super excited. I have begged Daniel to take family pictures since Mia was welcomed into our family. All of our family pictures that are hung on the walls of our house are beautiful, but one child is missing! We are fixing that problem. Quickly. I want Daniel to have a huge picture of his family hanging right smack in front of his bed, to serve a a reminder of how important fighting this terrible disease is. Not that I think he doesn't already know! He is a fighter. I love pictures and I love my family. until next time...xoxo Kristin

So, how am I spending my days at the hospital? I live with my iPad, complete my summer class assignments (did I tell you I am a full time student,again?), search the Internet, endlessly, and spend almost every ounce of my time, with Daniel. But, today... I ventured out past the normal eating establishments, past the galleria, past Target (I could spend hours there)... I went to the Soulard Farmers Market- best evah- promise. I absolutely loved that place. Fresh veggies, fruits, gelato, one of a kind spices, rugs, jewelry, dreamcatchers, lobster, fish, kielbasa, cheese, rabbit, bison, pets ... Point is- that place, had everything. love at first sight. If you are ever in St. Louis, on Wednesday- Saturday, you need to check it out! It is downtown by the Arch, stadium, etc. Okay, so maybe not all people find excitement in farmer's markets, but seriously, I do. My purchase: purple potatoes (high in antioxidants, you can't find them where we live), home-ade pierogies, and a whole lot of spices! I will be going back real soon. Another great find of the day- Time For Dinner(thank you Jessica). Let me tell you about this place. It is locally owned by 4 ladies, and it is awesome. You plan a time to go in, you check their menu, pay for what entree's you want, you prepare it with their instructions and materials, stick the name and directions of the entree on the package, and you take it home! Stick it in your freezer and cook it when you feel like it. Everyday ingredients, SIMPLE? Women, friends, husband and wives, boyfriend and girlfriends, families, anyone, can do this- together! The best thing... They provide all of the nutritional information with the packaging. If you aren't in St.Louis, you can even have them send you the entrees. Seriously, check it out www.timefordinner.com. I am hooked! Those sweet ladies, are holding my food until tomorrow, because, I don't have access to a freezer. So sweet, of them! 

Daniel received some of the best news! Today, Emily, his Nurse Coordinator, called to inform him that the preferred donor- the 32 year old, male, international, donor, has agreed to provide his bone marrow to Daniel! We are so very happy, excited, humbled... Can you believe it? This gentleman has agreed to provide his blood by actually removing it from his bone marrow. This is much like the bone marrow biopsies that Daniel receives. I have heard that they are quite painful! We have no idea why this route was chosen by him. Most of the time, these donations are acquired via a simple blood donation, much like giving blood at a blood drive. From our understanding, with this route of donation, Daniel will have less of a chance of developing Graft Versus Host Disease, a disease that is very common in transplants. So, why this man is choosing to be so generous, we have no idea. But, are we ever grateful! Daniel will be readmitted to the hospital on July 19, to begin his 3rd and final chemotherapy treatment. On July 27, he will receive his transplant. He will most likely be in the hospital for 30 days (give or take a little), and will live in close proximity to the hospital for 30 days, or so, after the transplant! 

I am trying to revamp this blog, make it prettier... It is quite hard from the iPad. When we get home, I will work on it. Anyway, anyone want to guess how many times that this little blog has  been viewed? 29,213 times!!!! Not just from US residents, but 7 other countries. Amazing huh? I can guarantee that there are other nationalities, praying for that amazing husband of mine! It feels so good. As we head home in the morning, we are so grateful for all of the prayers and support that our entire family has received. Please continue to keep him in your prayers...  look at how glorious they have been!  Our God, is so good!XOXO