When Daniel and I dated in college, he meant the absolute world to me. The world revolved around him and nothing else mattered. When he asked me to marry him, I thought that I was the luckiest girl around. Ask my closest friends, and they would tell you the same thing! We lived our life, had fun, and got married and had our children, young. Last year, after I delivered Mia, we decided that our family was complete. Even though, I dreamed of having a little boy, so badly, we knew that for my health, it was the best thing. I did not have one healthy pregnancy. Each one, was complicated in itself. Actually, I had to talk Daniel into conceiving Mia. He actually wanted to wait another year. We are so glad that we conceived her when we did. Actually, someone must have been looking out for us! Today, Daniel and I have been married nearly 6 years- whoa! It sure doesn't seem like it. Looking back on that day, it was beautiful, but, was it ever hot! It wasn't the fairytale wedding that most girls would dream about, but, that wasn't what I wanted, to begin with. Most weddings today, are much more extravagant. That day, when we said our vows - that went something like this : I do to good times. For richer or poorer. For good times and bad. And, for sickness and in health. I do. I made a promise to myself. My promise is that I would never provide my children with a "broken" family. I grew up in one, and I would never want my children to go through the things that I did. That was the absolute most powerful thing that I could ever do. At that point, not a one person could have predicted the future for us. Since then, we have been trying to figure out our way in the world, we have worked hard, had fun, and are learning how to be the best parents and raise our girls' to be respectable young ladies. We have laughed, we have cried, there have been fights, and We have celebrated. There have been years that seem like they have flown by... There has been lots of "liven". And there are many moments, that I will forever cherish! Today, there aren't cinderella dresses or tuxedos, but, there is a whole lot of love, and support. There have been many victories celebrated, but, the biggest one of all, is that this cancer thing- it will probably be the biggest victory that we have ever celebrated. And, I am so ready!
I try to stay positive, about the whole situation. I am annoying myself by thinking about it so much! There are too many "what if's". it makes me tired. Today, I delivered some paperwork to Daniel's Nurse Coordinator. Everything that we sign, every bit of it, states that treatment will last "x" amount of months or years, or until death. It scares me. These are very much like contracts, you sign your life away! This was the first time that I have spoken to her by
myself. Of course, I had many questions. I explained to her that my biggest fear is raising my children by myself. It is a thought, that seems so un- imaginable to me. She assured me that people like Daniel, go on to live perfectly normal lives, and that, is not going to be the case with us! In my mind, I am trying to work through every possible scenario that I can- and it is tough. The coordinator explained to me how lucky Daniel really is. Although we have not had a confirmed response from the potential donor, Daniel has 3 perfect matches for the bone marrow transplant. Most people, do not even have 1. Daniel has 3! Lucky guy! Most of the time, people are transplanted with 7 out of 10, or 8 out of 10 of what they are looking for. Daniel, is also in very good health, unlike most. There are far more successes than not! Promise. No worries. Daniel and I both believe that with a positive outlook and a whole lot of prayers, he will conquer this disease.
Y'all are probably wondering why there has been so much lag time with a blog post. Daniel was slated to begin round 2 of treatment on Friday, June 24. Literally, two hours before we were set to leave, we get a phone call that told us to wait until Monday, because there was not a room available for him. So, we got a few extra days to soak up all of the energy of the Presley girls'. Love those girls! I spent the day with some of my "extended family" at the river, or as Avery says "wiver". She is so stinking cute! Today, we started with labs at 6:45 a.m. He just now, got admitted to his room! The first room that was supposed to be his, the gentleman, leaving it, crashed on the way out. Good thing we didn't get that room! Anyway, he had his first treatment this morning, next one, I'll be tonight. So far, he is feeling good. He will receive 2 treatments a day on days 3, and 5. Hopefully, we will go home immediately following treatment. His counts will be low, so infection risk, will be higher. So far, everything is going good with him. He is on a different floor, and he isn't impressed, thus far. We keep thinking... 5 days!
Hopefully, we will know a little more about the donor. Good night, folks!xoxo
Monday, June 27, 2011
Monday, June 20, 2011
Some Thoughts, and a Bake Sale...
In many conversations over the last 10 years, Daniel and I have talked about EVERYTHING. Daniel has mentioned to me several times, that he thought that he would one day get cancer. In fact, I had a day off of work, sent the kids to the babysitter, and enjoyed a lunch date with him (it doesn't happen often), just a week before Daniel was diagnosed with Leukemia. In the car, he mentioned to me that he believed, one day, he would have cancer. The topic of conversation at lunch was how I wanted to get rid of all plastic containers and only use glass, because of the harmful chemicals released when used in a microwave or dishwasher. I wanted to replace all of my non-stick cookware that was bad- which, we all should do. Currently, I am choosing not to use non-stick cookware. He told me that I was crazy. Anyhow, since his diagnosis, these are all things that I have been seriously thinking about. When he was in the hospital, the reports or radiation emmiting from cell phones was a "hot topic". My kids love my cell phone. Should I not let them use it? Even Mia is obsessed. I fear germs, worse than I did before. Hard to believe, right?? If organic was a reasonable option- I would choose it. Where we live- it just isn't reasonable. I think about cancer rates, and how they keep increasing, especially in the young. So today, I am taking more proactive steps with my family's health. Less fast food, less convenience foods, less empty calories (crap-foods), more wholesome living, and more active lifestyles!
The truth is, I look at the world, completely different. I am less trustworthy, more careful! I am trying to be a better wife, a better homemaker, a better mom, and better, at everything. I am taking time to listen, to play house, to color, to make better meals (when it is possible)... I am enjoying life, the best that I can! I am taking time, to do things, that I should have done a long time ago. I hope to never take for granted- the title of MOMMY, ever again. Afterall, it is a pretty important title- right?
Daniel, is still feeling good. In fact, he worked today! Before anyone gets excited- he stayed in the truck, all day, and hauled bean seed to his dad. Nothing too hard! We have been trying to work through insurance issues- what a complete NIGHTMARE! We are trying to get one of his prescriptions re-filled, it is extremely costly, he has to have it, the insurance company is making it difficult... enough said. We learned that his next round of chemo treatment is going to be strong. It starts Friday, will last 5 days. Be praying for him!
There is going to be a bake sale this Saturday at the Malden Wal-Mart. My sister- in-law is in charge of it. There will be baked goodies of all kinds! All of the funds raised will be directly donated to the Be a Match Marrow Registry. This organization is so important to us and to many other families. If it weren't for them, we would be facing very different circumstances. While we appreciate all of the kind contributions that have been made to our family, if you are able to donate a few dollers, to help this organization, please do. This blog has been viewed almost 2,000 times. If everyone donated just $1, think of how many people just like Daniel, could be helped. If you are interested in donating, or sending a baked "something", please let me know!
Tomorrow, I am headed to Poplar Bluff, to clean out my desk at the Community Resource Coucil. Sad day, my friends! I don't know why, but I dread it. I was in Poplar Bluff last week, was going to do it then... but chickened out! Tommorrow, I have to do it. Thank you for hanging by my side, when I have struggled. Thank you! Good Night! XOXO
The truth is, I look at the world, completely different. I am less trustworthy, more careful! I am trying to be a better wife, a better homemaker, a better mom, and better, at everything. I am taking time to listen, to play house, to color, to make better meals (when it is possible)... I am enjoying life, the best that I can! I am taking time, to do things, that I should have done a long time ago. I hope to never take for granted- the title of MOMMY, ever again. Afterall, it is a pretty important title- right?
Daniel, is still feeling good. In fact, he worked today! Before anyone gets excited- he stayed in the truck, all day, and hauled bean seed to his dad. Nothing too hard! We have been trying to work through insurance issues- what a complete NIGHTMARE! We are trying to get one of his prescriptions re-filled, it is extremely costly, he has to have it, the insurance company is making it difficult... enough said. We learned that his next round of chemo treatment is going to be strong. It starts Friday, will last 5 days. Be praying for him!
There is going to be a bake sale this Saturday at the Malden Wal-Mart. My sister- in-law is in charge of it. There will be baked goodies of all kinds! All of the funds raised will be directly donated to the Be a Match Marrow Registry. This organization is so important to us and to many other families. If it weren't for them, we would be facing very different circumstances. While we appreciate all of the kind contributions that have been made to our family, if you are able to donate a few dollers, to help this organization, please do. This blog has been viewed almost 2,000 times. If everyone donated just $1, think of how many people just like Daniel, could be helped. If you are interested in donating, or sending a baked "something", please let me know!
Tomorrow, I am headed to Poplar Bluff, to clean out my desk at the Community Resource Coucil. Sad day, my friends! I don't know why, but I dread it. I was in Poplar Bluff last week, was going to do it then... but chickened out! Tommorrow, I have to do it. Thank you for hanging by my side, when I have struggled. Thank you! Good Night! XOXO
Thursday, June 16, 2011
A Challenge For You...
I'm typing this blog post while Daniel is driving us home! I guess my driving skills are not trustworthy- or so, he says! Since I last blogged, I will tell you that I resigned from my job at the Butler County Community Resource Council. This was something that I painfully dreaded. I tried to run every possible scenario through my head and contemplated several things, before I finally realized that I needed to be there for my husband and 3 lovely girls. For those of you who *really* know me, know that I loved my job, I love the people that i worked with, and most importantly, I loved what the Community Resource Council stood for and all of the great opportunities in the community that are made possible, because of the agency. I will forever miss the friendships, and connections that were made in the 3 years that I was employed there. This was the best decision to make, and the best thing for me, at this point, and i need to continually tell myself that. I strive on tasks, list making, and most importantly, having a plan for the day, and being unemployed, doesn't describe any of the above. I never really worked because of the salary, for those of you who have ever worked in the non-profit area, know exactly what I am talking about. However, I did work because it made me feel good, and I enjoyed it. So, as I transition into being a full-time momma, caregiver, wife... I am going to try and enjoy it!
I am going to drive myself crazy if I continue to second guess why my life is so chaotic right now. I do not know where we are going to be today, or tomorrow, or what kind of night we are going to have tonight, but i can tell you, that we are going to make it the best that we can. We are going to take it one step at a time. Making dinner is overwhelming- good thing that i have good friends who are helping me with that aspect, cleaning my house is overwhelming- good thing that i have the best cleaning lady, and folding laundry- it will just have to wait! I havent had a face- to- face conversation with a friend (you know, one, with no tantrums, little girls who check out every toilet around, or none without cleaning dirt out of every crevice on a little tanned body), since New York. My hair- its serious. Good thing that i have an appointment with Michael tomorrow night! Getting out of the house, is a miracle in itself! I am not complaining, because, I have three beautiful children and a husband, who fill my life with so much happiness. And, there are no words to describe it. My husband, he gets me and understands my rants, for example, when I get frusterated at the house and it's lack of organization that drives me crazy. He truly- gets me, and no other person does, and no other person supports me, the way that he does. Those girls and that amazing husband of mine- they can't wait (to be enjoyed).
On to the news that all of you are awaiting! Daniel just finished 2 days of doctors appointments! We received very good news. That bone marrow biopsy that he had last week- there was NO sign of leukemia and no sign of the Philadelphia Chromosone. Can I get a big YEAH? You see. This is so important. The type of leukemia that Daniel has a high disease rate, meaning that it has a 100% chance of returning. Although doctors want the treatment to work, it usually is not that successful. What does this mean? Well, the bone marrow transplant can not take place until he is in remission- which he is, and it has a higher success rate, with this news. As far as future chemo treatments, he will be admitted next Friday for his 2nd round, and it will last 5 days, inpatient. Then, hopefully, there will only be one more treatment, and that is when he is admitted for the bone marrow transplant. That, is slated to take place 4-6 weeks from now! More news about the bone marrow transplant- there is a potential match. The candidate is a 32 year old male who does not live in the country. He will be contacted immediately, and hopefully, we will have a good answer within the week. There were actually 3 good matches, but Daniel's oncologist really wanted this one to work. He tends to prefer male donors, because, they usually are better specimens! Finally, some good news! After the bone marrow transplant, Daniel will be enrolling in a study. Rate of relapse following a transplant it 25-30%. Daniel's oncologist says that it is too high for him, so, this study will require him to have a 5 day treatment, every 6 weeks, outpatient, at Barnes, for 1 year- post transplant. He believes, that this treatment decreases the chance of relapse. So- how is that for an update?
Oh yeah, most of y'all know that there is going to be a bone marrow drive held for Daniel on July 12, from 3-7 p.m. At the Pleasant View General Baptist Church in Risco, MO. Even if this "match" comes through for Daniel, we still want people come out. Wouldn't it be nice if there was a local match? Even if there wasn't a match from the drive- how do you think that the potential match for Daniel, got on the registry to begin with? Yep, you guessed it. More than likely, he attended a drive just like the one you are going to attend. How good would You feel knowing that there was a 28 year old male, with 3 children ages 6, 3, and 9 months, who need just one bag of blood, that would save his life, and that blood, could be from you? I don't know each and everyone of you who read this, but that, would make me feel so good. Even if you aren't a match for Daniel, you may be a match someday for a 12 year old, who is a talented basketball player, and if given a chance at life, will one day be the next Dirk Nowitzki, or a 30 something mom of twins, who has yet to see them take their first steps, and you could save her life. Regardless of the gender, age, circumstances, if it weren't for caring people, many people would not be given the chance to beat this disease! All that it requires, is a swab in the cheek of your mouth, some questions answered, and BAM! You could save a life! I encourage each and everyone of you to take the challenge! Do it for Daniel! Until next time- xoxo
I am going to drive myself crazy if I continue to second guess why my life is so chaotic right now. I do not know where we are going to be today, or tomorrow, or what kind of night we are going to have tonight, but i can tell you, that we are going to make it the best that we can. We are going to take it one step at a time. Making dinner is overwhelming- good thing that i have good friends who are helping me with that aspect, cleaning my house is overwhelming- good thing that i have the best cleaning lady, and folding laundry- it will just have to wait! I havent had a face- to- face conversation with a friend (you know, one, with no tantrums, little girls who check out every toilet around, or none without cleaning dirt out of every crevice on a little tanned body), since New York. My hair- its serious. Good thing that i have an appointment with Michael tomorrow night! Getting out of the house, is a miracle in itself! I am not complaining, because, I have three beautiful children and a husband, who fill my life with so much happiness. And, there are no words to describe it. My husband, he gets me and understands my rants, for example, when I get frusterated at the house and it's lack of organization that drives me crazy. He truly- gets me, and no other person does, and no other person supports me, the way that he does. Those girls and that amazing husband of mine- they can't wait (to be enjoyed).
On to the news that all of you are awaiting! Daniel just finished 2 days of doctors appointments! We received very good news. That bone marrow biopsy that he had last week- there was NO sign of leukemia and no sign of the Philadelphia Chromosone. Can I get a big YEAH? You see. This is so important. The type of leukemia that Daniel has a high disease rate, meaning that it has a 100% chance of returning. Although doctors want the treatment to work, it usually is not that successful. What does this mean? Well, the bone marrow transplant can not take place until he is in remission- which he is, and it has a higher success rate, with this news. As far as future chemo treatments, he will be admitted next Friday for his 2nd round, and it will last 5 days, inpatient. Then, hopefully, there will only be one more treatment, and that is when he is admitted for the bone marrow transplant. That, is slated to take place 4-6 weeks from now! More news about the bone marrow transplant- there is a potential match. The candidate is a 32 year old male who does not live in the country. He will be contacted immediately, and hopefully, we will have a good answer within the week. There were actually 3 good matches, but Daniel's oncologist really wanted this one to work. He tends to prefer male donors, because, they usually are better specimens! Finally, some good news! After the bone marrow transplant, Daniel will be enrolling in a study. Rate of relapse following a transplant it 25-30%. Daniel's oncologist says that it is too high for him, so, this study will require him to have a 5 day treatment, every 6 weeks, outpatient, at Barnes, for 1 year- post transplant. He believes, that this treatment decreases the chance of relapse. So- how is that for an update?
Oh yeah, most of y'all know that there is going to be a bone marrow drive held for Daniel on July 12, from 3-7 p.m. At the Pleasant View General Baptist Church in Risco, MO. Even if this "match" comes through for Daniel, we still want people come out. Wouldn't it be nice if there was a local match? Even if there wasn't a match from the drive- how do you think that the potential match for Daniel, got on the registry to begin with? Yep, you guessed it. More than likely, he attended a drive just like the one you are going to attend. How good would You feel knowing that there was a 28 year old male, with 3 children ages 6, 3, and 9 months, who need just one bag of blood, that would save his life, and that blood, could be from you? I don't know each and everyone of you who read this, but that, would make me feel so good. Even if you aren't a match for Daniel, you may be a match someday for a 12 year old, who is a talented basketball player, and if given a chance at life, will one day be the next Dirk Nowitzki, or a 30 something mom of twins, who has yet to see them take their first steps, and you could save her life. Regardless of the gender, age, circumstances, if it weren't for caring people, many people would not be given the chance to beat this disease! All that it requires, is a swab in the cheek of your mouth, some questions answered, and BAM! You could save a life! I encourage each and everyone of you to take the challenge! Do it for Daniel! Until next time- xoxo
Sunday, June 12, 2011
Birthday Love...
I know, I am slacking on the blogs. Truth be told, we have been so very busy, enjoying life. Oh, how i have missed the whole family being together. It sure feels so good. We celebrated Ashlynn's birthday, beautifully. It was a good day. Beautiful weather, beautiful family friends, beautiful birthday girl... You get the point? Pictures soon. I'm too tired to walk up stairs, drag the camera out, and post the pictures. Another day- ok?
Daniel is doing wonderful. He is soaking up all of the baby love he can get, even from the soon to be 6 year old, and the vivacious 3 Year old. I'm telling you, these girls are amazing. Mia is so close to walking. She is taking 3-5 steps at a time. so close... For sure, in the next week or so, we'll be done crawling. Avery, has been so independent these days. She insists on wearing leotards every day, all day. It is a good thing that we have a gazillion of them. She has to fix her own hair, and she has become quite the make-up artist. Bright red lipstick- yep, she wore it to Ashlynn's t-ball game the other night. There is no stopping her, because, it just isn't worth the fight. Ashlynn, will always be the sweetest thing. Let me tell you what she did the other day. She logged onto my Facebook, typed in her crush's name(a high school boy) and posted "hey, it's Ashlynn" on his page. Oh my, what am I going to do? We are definitely going to have our hands full, in a few years.
This week, Daniel heads back to St.Louis on Wednesday for a doctor's appointment. Thursday, he sees his oncologist. At this appointment, we will find out the bone marrow biopsy results. We hope to know wether there is a "match" for him on that day as well. They have told us that it could take months to find a match. We are hoping that is not the case. We have been told to have bags packed, because it is likely that he will be readmitted to undergo another treatment. With that being said, hopefully, we will have some answers at the end of the week. Not much of an update- but, here's isn't a whole lot to say about it. Stay tuned, towards the end of the week!! Xoxo
Daniel is doing wonderful. He is soaking up all of the baby love he can get, even from the soon to be 6 year old, and the vivacious 3 Year old. I'm telling you, these girls are amazing. Mia is so close to walking. She is taking 3-5 steps at a time. so close... For sure, in the next week or so, we'll be done crawling. Avery, has been so independent these days. She insists on wearing leotards every day, all day. It is a good thing that we have a gazillion of them. She has to fix her own hair, and she has become quite the make-up artist. Bright red lipstick- yep, she wore it to Ashlynn's t-ball game the other night. There is no stopping her, because, it just isn't worth the fight. Ashlynn, will always be the sweetest thing. Let me tell you what she did the other day. She logged onto my Facebook, typed in her crush's name(a high school boy) and posted "hey, it's Ashlynn" on his page. Oh my, what am I going to do? We are definitely going to have our hands full, in a few years.
This week, Daniel heads back to St.Louis on Wednesday for a doctor's appointment. Thursday, he sees his oncologist. At this appointment, we will find out the bone marrow biopsy results. We hope to know wether there is a "match" for him on that day as well. They have told us that it could take months to find a match. We are hoping that is not the case. We have been told to have bags packed, because it is likely that he will be readmitted to undergo another treatment. With that being said, hopefully, we will have some answers at the end of the week. Not much of an update- but, here's isn't a whole lot to say about it. Stay tuned, towards the end of the week!! Xoxo
Wednesday, June 8, 2011
Home Sweet Home
Blogging from the couch tonight, via the iPad. So, with that being said, I am apologizing now, for the grammatical errors that will occur in this st. I knew you guys would understand! We have been soaking up "daddy" being home these last few days. There is so much fun to be had with him around. There are not enough hours in the day to thoroughly enjoy him, the way that we want too. His spirits are so good right now- unbelievable! He has told me, over and over, "I don't feel sick". He really looks good. For those who have gotten the chance to take a peek- wouldn't you agree?
Today, we mad our first trip to the clinic at Barnes. Before we left the hospital, there were a whole gamut of recommendations that were given to us. These recommendations included: what foods to avoid, what places to avoid, not get out in the heat, and avoid sick people. So, clinic was interesting. It was packed full of people, some well, some coughing, sneezing- yeah it was wonderful. We stood in the corner, like a couple of fools. I told Daniel that I would rather play it safe and that we would never see these folks again. 1.25 hours after our original appointment date, we were in the room awaiting a bone marrow biopsy- the 4th since April 30, 2011! Daniel is becoming quite the pro, these days. We had heard that those people in clinic- they have bone marrow biopsy skills. Daniel too, agrees that they give an awesome bone marrow. Hard to imagine, right? It always makes the situation a little easier, when i see that he isn't in pain. Anyhow, results next week, when we see the "godfather" physician. Seriously, you google him, and that is what you find out about him. It's a pretty good feeling that we have one of the best doctors in the nation!
Back to us, week, we have a PARTY this weekend. I am ashamed that i have not put the effort into this party that I normally do. We have t-balled it up, too. Daniel actually got to watch Ashlynn's t-ball game from the car. I think he enjoyed it. Another thing that we have been doing- getting this house in order. Since i really haven't been home, there has been so much to do- ughh! Packed Winter clothes away, grocery shopped, suitcases of clothes put away, doctors appointments- baby check-ups, ... Anything else to consume me. Enjoying sleeping. When we are at the hospital, I don't sleep, when i am home and he is at the hospital, i don't sleep. Having my whole family here, at our home... I sleep, and it feels so good! Much love to everyone of our friends, family, and everyone who has sent their prayers. Please keep them coming. For now, I'm going to get back to the CMT awards and these kids, that are begging to be loved on. Xoxo
Today, we mad our first trip to the clinic at Barnes. Before we left the hospital, there were a whole gamut of recommendations that were given to us. These recommendations included: what foods to avoid, what places to avoid, not get out in the heat, and avoid sick people. So, clinic was interesting. It was packed full of people, some well, some coughing, sneezing- yeah it was wonderful. We stood in the corner, like a couple of fools. I told Daniel that I would rather play it safe and that we would never see these folks again. 1.25 hours after our original appointment date, we were in the room awaiting a bone marrow biopsy- the 4th since April 30, 2011! Daniel is becoming quite the pro, these days. We had heard that those people in clinic- they have bone marrow biopsy skills. Daniel too, agrees that they give an awesome bone marrow. Hard to imagine, right? It always makes the situation a little easier, when i see that he isn't in pain. Anyhow, results next week, when we see the "godfather" physician. Seriously, you google him, and that is what you find out about him. It's a pretty good feeling that we have one of the best doctors in the nation!
Back to us, week, we have a PARTY this weekend. I am ashamed that i have not put the effort into this party that I normally do. We have t-balled it up, too. Daniel actually got to watch Ashlynn's t-ball game from the car. I think he enjoyed it. Another thing that we have been doing- getting this house in order. Since i really haven't been home, there has been so much to do- ughh! Packed Winter clothes away, grocery shopped, suitcases of clothes put away, doctors appointments- baby check-ups, ... Anything else to consume me. Enjoying sleeping. When we are at the hospital, I don't sleep, when i am home and he is at the hospital, i don't sleep. Having my whole family here, at our home... I sleep, and it feels so good! Much love to everyone of our friends, family, and everyone who has sent their prayers. Please keep them coming. For now, I'm going to get back to the CMT awards and these kids, that are begging to be loved on. Xoxo
Thursday, June 2, 2011
Fevers...
Seriously, as soon as I hit "post" on my blog, as soon as I thought that it was safe to say that Daniel was out of the woods, for now, he got a fever Tuesday night! Fevers... darn those fevers. Fevers are not good when your blood counts are low (especially, your white blood cells). Although Daniel's blood counts are rising, any type of fever is still not good. Fever= Infection (Not the equation that we want). Turns out, that a neussiance (Daniel thought), was a bigger problem than he thought. I'm not going to go into details- :-). Anyway, a 102.6 fever was not a good thing. Blood cultures were drawn, a minor surgical procedure (in the room, that is how minor it was), and a whole lot of pain later, we are still here in room 6937. Definitely where we weren't planning on being tonight or tomorrow! Anyway, the attending physician was by earlier this evening- told us that if Daniel tolerates his medication in pill form (up to today, he has had mostly intravenious forms), then it looks like we may be home Saturday!!! Sounds good- right? It is for the most part. The next several weeks will be filled with Dr. appointments, blood draws, and a bone marrow biopsy. The lady that is helping us with the bone marrow donor told us to go home and make it as good as it can be- because there is no reason to dwell on our circumstances. So, that is what we are going to do.
Keeping our fingers crossed, we will venture home. Y'all have no idea how much this will help Daniel's spirits. Of course, it is going to help my spirits too. But Daniel, he needs this. We are on Day 33 at the hospital. He has missed a whole month of his kiddos growing up. I know that this is just a small fraction of the time that he will have cumulatively spent- but, you get the point- eh? Anyway, last night Ashlynn was staying at my in law's house and she retreated to the bedroom. She is a little "techie", and she was, what they thought playing on the internet (She likes pbskids.org). An hour later, she was found crying. Crying because she had navigated her way around and found the video of the fish fry. When asked what she was crying for- she replied "I miss my daddy and I want to see him". This was the first time, that she has been pretty emotional about it- to anyone. I guess that she is a whole lot like her Momma. I run from problems, and try to ignore their existence. In my own little world, I dwell on the problems, in my own space, and I try not to let anyone know that I really am not as strong as I may appear to be. My heart was crushed today when I learned of this. It is still crushed.
Moving on... this trip home, we will be trying out a new way of living - Simplify! Our new "normal, requires us to simplify- a whole lot. Less going, less doing, more living! We will be enjoying nights at home- 7x a week. Well, there are a few exceptions, such as gymnastics. Daniel, he won't participate. It is so important that we keep any sicknesses away. Eating out- not as a family. Carryout is okay, no buffets (of any kind). Fruits and veggies, must be cooked. If eaten in raw form, they must be washed really good. No public places. If going around people- a yellow face mask must be worn. All of the above mentioned things, apply to Daniel's new life. Atleast, for the next year, or so. Are you jealous yet? We are so happy that Daniel is doing so well. You all have no idea, REALLY. Maybe, this weekend I can get a picture of the "bald guy". I think that I like the look! The look on Ashlynn and Avery's face when their daddy gets home- will be PRICELESS!
For the hundred acts of kindness that have been offered once we get home, we are so grateful. If there is one thing that we have learned in this process, it is that we are surrounded by phenominal family, friends, and, a community that everyone should get a chance to live in. We are so grateful for everything. I worry that I am not responsive enough. I have a stack of thank-you cards that are ready to mail, some that need addresses, and many, that I am positive, that I forgot. I am so very sorry. Our entire family, is so humbled by the support that everyone has shown us. Please continue to think about our family, and most importantly, keep your prayers going up. We have several more humps through this journey. The next biggest hump- the bone marrow biopsy. At this point, we will know if Daniel is really in remission. The next hump- finding a bone marrow donor, and so on. Look at what your prayers have already done- I believe, Daniel will beat this, we just need a little more help, and this is where you guys are very important. Look for a blog post early next week, as we plan on settling in over the weekend! XOXO
Keeping our fingers crossed, we will venture home. Y'all have no idea how much this will help Daniel's spirits. Of course, it is going to help my spirits too. But Daniel, he needs this. We are on Day 33 at the hospital. He has missed a whole month of his kiddos growing up. I know that this is just a small fraction of the time that he will have cumulatively spent- but, you get the point- eh? Anyway, last night Ashlynn was staying at my in law's house and she retreated to the bedroom. She is a little "techie", and she was, what they thought playing on the internet (She likes pbskids.org). An hour later, she was found crying. Crying because she had navigated her way around and found the video of the fish fry. When asked what she was crying for- she replied "I miss my daddy and I want to see him". This was the first time, that she has been pretty emotional about it- to anyone. I guess that she is a whole lot like her Momma. I run from problems, and try to ignore their existence. In my own little world, I dwell on the problems, in my own space, and I try not to let anyone know that I really am not as strong as I may appear to be. My heart was crushed today when I learned of this. It is still crushed.
Moving on... this trip home, we will be trying out a new way of living - Simplify! Our new "normal, requires us to simplify- a whole lot. Less going, less doing, more living! We will be enjoying nights at home- 7x a week. Well, there are a few exceptions, such as gymnastics. Daniel, he won't participate. It is so important that we keep any sicknesses away. Eating out- not as a family. Carryout is okay, no buffets (of any kind). Fruits and veggies, must be cooked. If eaten in raw form, they must be washed really good. No public places. If going around people- a yellow face mask must be worn. All of the above mentioned things, apply to Daniel's new life. Atleast, for the next year, or so. Are you jealous yet? We are so happy that Daniel is doing so well. You all have no idea, REALLY. Maybe, this weekend I can get a picture of the "bald guy". I think that I like the look! The look on Ashlynn and Avery's face when their daddy gets home- will be PRICELESS!
For the hundred acts of kindness that have been offered once we get home, we are so grateful. If there is one thing that we have learned in this process, it is that we are surrounded by phenominal family, friends, and, a community that everyone should get a chance to live in. We are so grateful for everything. I worry that I am not responsive enough. I have a stack of thank-you cards that are ready to mail, some that need addresses, and many, that I am positive, that I forgot. I am so very sorry. Our entire family, is so humbled by the support that everyone has shown us. Please continue to think about our family, and most importantly, keep your prayers going up. We have several more humps through this journey. The next biggest hump- the bone marrow biopsy. At this point, we will know if Daniel is really in remission. The next hump- finding a bone marrow donor, and so on. Look at what your prayers have already done- I believe, Daniel will beat this, we just need a little more help, and this is where you guys are very important. Look for a blog post early next week, as we plan on settling in over the weekend! XOXO
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