The Value of Donating Blood

Back in 2009, my then 3 year old daughter Elise, was diagnosed with Leukemia. Cancer treatment in children is very aggressive. After each round of chemotherapy (there were six rounds total) she was hospitalized no less than three weeks while her blood counts were monitored daily in hopes of fighting off infection that could threaten her life. During that three week period (it was often longer than three weeks), Elise received numerous blood and platelet transfusions. There were many things that we kept track of, but the number of transfusions was not one of them. It is safe to say that she easily had dozens of pints of blood and platelets during treatment for cancer. Eventually, she was able to get her cancer into remission where it has stayed ever since. This would not have been possible without the lifesaving blood that came from donors from all over.

Prior to Elise getting sick I was never inclined to donate blood. I did not have a good reason not to donate, I just never really considered doing it. What was the point? I don’t recall ever really knowing anybody that needed blood and my family was relatively healthy. Seeing the amount of cancer patients in the hallways where Elise spent her time made it really obvious to me that there was a huge need. This was only one facility and it only served kids. There were at least a dozen cancer centers in the area that served a wide variety of people. I am positive their needs were the same.

One of the most touching tributes some friends did for our daughter was to contact the American Red Cross and organize a blood drive in her honor. Hundreds of people came and donated blood that day. Whether Elise received any of the blood donated that day didn’t really matter to any of them. She had raised awareness that there was a need and people were glad to help in some way. Although this is our story, you likely know someone that has needed blood. There is no way to plan for that need. Accidents happen, people get diagnosed with life threatening diseases, and unexpected events are prevalent in all of our lives.

Donating blood is one of the great ways you can give to people and it doesn’t cost you anything more than a little bit of your time. They encourage you to eat well, drink lots of fluids, and they even provide snacks. It doesn’t get any better than that! What if donating blood makes you feel a little funny? Just imagine how those people feel that need your donation. I hope you will consider donating blood and donating regularly. You could have an impact on hundreds of people in your lifetime. You will likely impact a family just like mine and I can tell you that they will be thankful!

Searching for Answers in New Places

One of the many joys we get to experience, doing life with Elise, is in the world of tube feeding. Honestly, until she stopped eating several years ago, I didn't even know such a thing existed! What started out as a short term problem during chemotherapy several years ago, has morphed into a life that we never could have imagined. During treatment, Elise just stopped eating. At the time, there was no cause for concern as she was in the middle of active cancer treatment. Cancer patients are not generally known for their healthy appetites.

After finishing treatment, and failing to thrive by consuming enough calories by mouth, we made the decision to have a "G tube" surgically inserted into Elise's belly. This sure was more attractive than the tube dangling from her nose as we experienced for months prior! For the next couple of years, we struggled on with Elise getting 99% of her nutrition through her tube using various prepackaged nutrition formulas. In the beginning we didn't know it, but many of our struggles came from Elise's body rejecting something in the formula. Throwing up (multiple times per day) was a daily part of our life for more than 3 years. It is amazing what you can sit through, talk through, and even eat through when you get used to it! Even 4 year old Abby was skilled at eating with one handing and holding the puke bucket for Elise while she was getting sick. That's a different kind of cute isn't it?

Kelly was actively involved in researching some alternatives to feeding Elise. I wasn't against it, but what we were doing was pretty simple, we knew just how fast we had to be to catch puke across the room, and we were rarely ever caught anywhere without a puke bucket within arms length. Most days, things are hard enough. I didn't want anything that was going to be requiring more work for any of us.

In June we made the decision to transition Elise to a "new" diet that would get her away from formula and back into eating real food. This is known as the "blenderized diet". After only a couple of days we decided not to transition any longer, but to just make the switch immediately. We saw some amazingly positive things right away. We made it a 24 hour period without any vomit! (are you getting sick yet?) They funky dirty kid smell that Elise was always emanating was now gone. Most importantly, she began to sleep! Several years of getting 3-5 hours of sleep per night and waking up multiple times in the night was over just like that! Hallelujah!!!

What we didn't anticipate was a whole new problem that would soon surface. In the scheme of things, this has become more of an annoyance than anything. As long as she is sleeping, not puking, and remaining healthy, I will take annoyance any day! When we would hook up Elise's pump to her and feed her meals we began to notice that her pump was beeping A LOT more frequently than it ever had before. Anytime there is something "wrong" with the pump, it has an alarm that beeps. If there is no flow in to the pump it beeps. No flow out - beeps. No food - beeps (even though the bag is full!). Sometimes in the middle of feeding her it would alarm and say "load set" making it seem as though we never even loaded the food bag at all!

We contacted the company that we get the pump from relatively shortly after the issues began. After trying several trouble shooting tips I was told, "the pump isn't made for a blenderized diet". What!?!?!?! It's not made for food??? It seems the pump, and others like it, are manufactured to only handle formula that has to meet the stringent guidelines of the maker of the pump. Never mind whether it is the best "food" for the person receiving nutrition, as long as it is the consistency needed to please the pump manufacturer.

After a couple of months, Kelly noticed that it seemed like there was a lot more leftover food than there should be once a feed was completed. One evening during dinner, we were at the table for about 30 minutes with the pump working away in silent bliss. Suddenly, the silence was broken by the shrill beeping of the dreaded pump. When I went to reset it, I noticed that I had forgotten to un-clamp the tubing, which meant that Elise had not received any of the food that was supposed to be going through the pump. When I investigated, I noted that it said she had received more than half of the dose that she was supposed to get. There was NO way that could have happened.

That evening I contacted the 24 hour help for the pump manufacturer and I was told to contact my provider to have the pump replaced immediately. A few weeks later I was contacted by an "investigator" from the manufacturer who was gathering information about the malfunction to report to the Food and Drug Administration (FDA). I assured them I wasn't trying to make a federal case out of the issue, but rather trying to see that my daughter is getting the nutrition that she needs. Before hanging up I was reminded, "the pump is not manufactured to handle the blenderized diet". Seems like I had heard that before. It also appears there is no pump manufactured to handle the blenderized diet.

Generally, some of my best ideas come when I am really frustrated and backed into a corner. The excessive beeping was not only annoying, but the malfunctioning pump was also getting in the way of us ensuring that we were providing the proper nutrition to our daughter. One day while reading an announcement at work, it hit me. I am surrounded by some of the best and brightest in college students today, and some amazing faculty that are doing some awesome research that is currently impacting many things in the world and working to make the world a better place for tomorrow. Why can't we be a part of that? I didn't know who to call, but I was hopeful I could find somebody that might be able to make a connection somewhere and help me/us to get our foot in the door.

One day that connection was made to an instructor in the Biological and Agricultural Engineering department. He called me initially to get a little more information about what was going on. I explained what was happening, how we had made it to the point where we were at, and what I hoped to accomplish by having someone research the issue. He seemed interested from the beginning, but assured me he would need some time to think about it from various angles, see what kind of research is currently being done on this issue (if any), and check the interest of his students on a project such as this. I was thrilled within a couple of weeks they had committed to research the problems we were having with Elise's pump and try to help us find a long term solution! As we have learned in the past several months, this is not a unique problem for us. ALL families using the blenderized diet experience the same pump troubles. It is a widespread issue in the feeding tube community.

Class is in session with Professor Kelly

We were honored to host the four students and instructor recently as they came to see the blender in action, the pump in action, meet Elise, and hopefully see the pump act up. Much like taking your car to the mechanic, they got to see everything but the pump acting up. Kelly did a great job doing show and tell and teaching them what our life is like when it comes to feeding Elise. We showed them the mechanics of how the pump work, and they even got to witness me changing Elise's Mic-Key button (that's the name for the tube coming out of her stomach). None of them appeared too green around the gills or too highly disgusted. Not bad for a bunch of engineers!

Will anything come of this research? Who knows. We are just glad to have someone listening to our issues, finding ways to trouble shoot the problems, and hopefully helping us and thousands of others lead a more simple tube feeding life. I am hopeful that, given sufficient time, we can figure out how to have a long term solution. I would be proud that some students from my Alma Mater figured out a way to solve a problem that has been plaguing tube feeders for a while. Most of all, I would be highly pleased that I had the idea and the courage to seek out help in a unique setting. Like many things, we are all about finding answers to our unconventional issues in unconventional places.

Serving the Greater Good

My coworkers and I after our service project.

I was fortunate this past week to be a part of a large group service project. This has not always been a priority for me, but has taken a much greater significance of the past several years. Being the recipient of some of the worlds most kind hearted people "paying it forward" has certainly helped to mold my priorities into what they are today.

I attended a conference in Las Vegas this summer. During this conference, which had about 3,000 in attendance, there was a break in the scheduling and only one session was scheduled. The focus of the session was a large group service project that built hands for those in need in third world countries. All total about 1/3 of meeting attendees, or 1,000 people, attended that session. It was a huge success and the largest project of it's kind for the company that was leading the session. It was great to work with a table full of people that I have never met, and will likely never see again, on a project that will have an impact around the world. There was something about begin surrounded by that many people working to serve something other than themselves that was truly exhilarating.

When I returned from that conference I wondered how I could convince my clients (or sponsors as we call them) to do something similar. The first opportunity I had to suggest this concept was with my coworkers as I assisted in the planning of our division retreat. The planning committee was receptive to the idea, but not everyone was sold on it. I thought back to my time at the summer conference when over 1,000 people attended the service project and was quickly reminded that 2/3 of the people chose not to go to this session. As the leader of the service project reminded us, that 2/3 are not necessarily apathetic, they are "normal". The fact that 1/3 of attendees showed up was awesome and they were thrilled to have that number. For our staff, it wasn't going to be an option, so we needed to provide options that would suit the needs of everyone. We had about 60 people in attendance at our retreat and about 95% of them spent their afternoon working on one of the service projects offered.

In the planning phase, we spent many weeks talking about options and searching for the perfect fit that would allow all of us to participate in the same project. After coming up empty, we eventually narrowed the list down to five options that all employees could choose from. The options were working at the Flinthills Breadbasket, the Community Gardens, Sunset Zoo, UFM, and a card making project to be distributed to multiple groups after they were completed. As expected, there were some that weren't in love with the idea of doing a service project. We all have full plates of work that needs done and deadlines to be met. But, we all met the call of serving the greater good.

The pitchfork crew

 After the projects were finished the whole met together again for an ice cream social to end the day. Many people were exhausted, some like myself were pretty sweaty and stinky, but everyone had a smile on their face at the end of the day. For many, this was one of many times they were spend their time helping others. For others, this may be the only time. In the end, either one is okay with me. I enjoyed getting to see some of my coworkers in a different light and enjoyed the opportunity to do something outside of the norm for my usual business day. I would say it was a successful day no matter what. Hundreds, if not thousands, of people will benefit from the generosity that my coworkers gave on that day. Two short hours of their time will benefit so many. As someone who has been the recipient of the kindness of others, I can assure them that it will not go unnoticed.

A Day in the Life

Occasionally I get an interested friend, coworker, or even family member that wants to know what it is "really" like on an average day in our house. We have honed the fine skill of making the most out of our life and don't spend much time dwelling on how difficult some things truly are. I decided on Saturday that I would try to truly keep track of how our day went and document that for all of those interested. Here is a day in the life of the Tony Ballard family.

I settled in for a good night of sleep on Friday night at midnight. Elise woke me up at 4:02 a.m. making some loud "grunting" sounds. This is how she wakes up every day. There is a small window of time when a decision needs to be made to just let her make noise a little while, or check up on her, get her changed and hope you can get her back to sleep before anything additional needs to be done. Not getting out of bed is really not an option as it generally leads to her having a seizure, falling and hitting her head, and running the risk of injury. I chose to get out of bed.

To my surprise, she had apparently been up a while and had put herself back to bed. (Note: she doesn't put herself back to bed when we are with her. She "plays" like she can't muster the strength to do it.) Her diaper was laying on the floor, weighing in at about 15 pounds, her sheets and pajamas were thoroughly soaked, and she was freezing cold. I made a quick make shift bed on the floor, stripped her down, cleaned her up, and put on new PJ's, stripped down and remade the bed, put her back in bed and drug myself back to bed to go back to sleep! After about 30 minutes of reading and checking Facebook I shut everything off and closed my eyes. About 30 seconds later Elise was back to grunting and awake. So, at 5:10 I crawled back out of bed and headed to Elise's room. I hopped in bed with her and tried to get her to settle back down to go to sleep. I continued this endeavor with relatively little success until about 6:00 a.m. At that point, I got out of bed to get her morning meds and water that she must have before she is able to eat breakfast. I discovered that she never got her Friday bedtime meds. This doesn't happen very often (like 3-4 times per year), but when it does we sure pay for it! As is usually the case, she fell asleep right after I gave her meds and I was finally able to go back to bed. At 6:30 I went back to sleep (this is Saturday and I can sleep in today right?) and was awoken by Abby at 7:30 a.m. She wanted to know if she could watch a movie and wanted to show me the new hair braiding technique she had just learned. Needless to say, I wasn't too interested and I sent her to wake up Kelly to help her out today. Abby was unsuccessful (and gave relatively little effort) at waking Kelly up. So, I got back out of bed, started a movie, poured Abby some cereal and milk, got Elise's food together and started her feeding pump and headed back to bed. Just as my rear hit the bed, the alarm on Elise's feeding pump went off and needed attention. I got back out of bed, restarted her pump and headed back to bed for some more sleep! Unfortunately, sleep never came back. Maybe it was the roughly 4 hours of getting in and out of bed, maybe it was Kelly asking "did you have to get up with Elise?", or maybe it was just that by body was "rested" after 4 hours of sleep. I guess I'll go with the latter. I certainly have to give a disclaimer that there have been MANY nights where Kelly has been out of bed with Elise and I slept through it all as well. It has certainly gone both ways, and actually on Sunday we did basically reverse roles. I guess that is how we make this work!

I finally gave up on trying to go back to sleep and got out of bed at 9:00 a.m. We were headed to KC for the weekend for a family birthday party and we set a goal on Friday night to get out of the house by 11:00 a.m. on Saturday morning. After getting up at 9:00 a.m. I was ready to make some breakfast and chug about a gallon of coffee! I had started the coffee maker during one of my earlier times out of bed and I went straight for the coffee maker after bed. While talking with Abby about what to make for breakfast Kelly decided we should make smoothies! Theoretically a great idea! Do you have any idea how much time it takes to cut stuff up for that if you are not prepared? I set out to cut up a pineapple, several mango's, and get together some other ingredients. Kelly gave Elise a bath and got her ready for the day. By the time the smoothies were prepared and the kitchen was cleaned back up, it was now 10:20 a.m.! I chugged my partial semi-warm smoothie, threw out my cold coffee (I never did have my coffee!), and hustled to start packing. Kelly got together the girls' clothes, I got the suitcase and all the stuff for the dog, and we packed all of our own clothes and personal items. Kelly ran to get a fast shower while I helped Abby get dressed for the day, comb hair, brush teeth, and find some toys for the car ride. I hopped in the shower for a speed wash at 10:50. So much for getting out of the house at 11:00 I guess. The rest of the preparations where uneventful and we actually got the kids, the car, the dog, and ourselves loaded and out of the house by 11:15! I sat in the car initially impressed at how quickly we had made everything happen in the end. Then I realized I had basically been going at it for 7 hours already and we STILL couldn't get out of the house on time!

Our ride to KC was one of the smoothest rides in a long time. No seizures on the car ride, which is very unusual, meant that we didn't have to stop for a puke bucket, a diaper change, or to clean up the car en route to our destination! We arrived at my in-laws house at just about 1:30 p.m. in time to drop off the dog and even have a little down time before needing to head out to Leavenworth for the birthday party. I managed to sneak in a quick 10 minute nap which was the highlight of my day! We had another uneventful car ride to Leavenworth and actually made it to the party about 10 minutes early. This is a record for us nowadays! We were glad to get there a few minutes early as that gave us all a couple of minutes to "Elise proof" the house a little more. Unless you live with Elise every day, there would be no real reason to have to do this to your house. Imagine what you have to do to "baby proof" your house to make it safe for a toddler. This is the same premise for Elise, but she is 7 years old. She is much taller than a toddler, stronger than a toddler and able to move and break more items, and she is prone to either having a seizure and falling or just stumbling and landing on items that are left out. It is standard practice for us to quickly go through several rooms trying to clear them like we are part of the SWAT team.

Elise and Abby were excited to see their cousin Keegan and went straight to his room to play. While Abby and Keegan began getting out toys and playing, Elise crawled up in his bed and laid down after being in the room about 10 seconds. So much for playing I guess! She was content to sit on the bed and mostly just watch the other kids play. We were just happy that she was able to stay safe and no unsuspecting little kids were cracked on the noggin by Elise's helmet! We all moved outside shortly after 3 p.m. for the party and it was a beautiful fall day here in Kansas.

I find that gatherings with other kids are frequently some of the most difficult things for me. It is a good time, but it is really hard to watch how active the other "neuro-typical" kids are, and see how delayed Elise is in all aspects of life. There is nothing that we can do about it, the other parents don't make me/us feel singled out, it is just difficult. There's really no other way to say it. Elise seemed to enjoy her time at the party and she even managed to stay awake the entire afternoon! The party was full of cookies, cake, balloons, water guns, capes and masks (it was a superhero themed party), and presents. A good time was had by all.

After the party we stayed behind to have dinner with Kelly's sister, the birthday boy, and Kelly's brother. While dinner was cooking Kelly asked a question about one of Elise's meds and we realized that it was the only med that we had left at home! Elise "had" to have that medicine. She only takes it at bedtime, did not get it on Friday due to our error, and needed to take it to be able to get sufficient sleep. A quick call to the pharmacy to solve that problem turned into a multi-hour endeavor that didn't solve anything. I learned from the pharmacy that Elise did not have any more refills left on that script. That meant we would have to call the doctor on call to get them to call in a refill order. I called the hospital and was connected to the "triage nurse" who takes down your information so that someone can call you back. After about 20 minutes, a nurse from the hospital calls to ask the exact same questions that I had already answered for the triage nurse. She told me that she would contact the doctor on call and have them call me. She ended the call by reminding me that if this is an emergency I should bring Elise into the ER immediately. Really???? Weren't we just talking? Does a prescription for sleep meds really sound like an emergency here? I assured her we would be fine and I would wait to hear from the doctor. Another 20 minutes later and the doctor called to ask the same questions that I had already answered for the previous 2 nurses. She determined that I was apparently not a raging lunatic and that we weren't trying to put 2 mL's of this drug out onto the street and she agreed to call it in to Walgreen's for us. One of the great things about Walgreen's is that you can generally get 24 hour access and can get the script filled anywhere. Well...........that's not always the case.

After dinner we loaded up our family and the birthday boy for an overnighter. We headed to the pharmacy, which was about 30 minutes out of our way. While driving Kelly had the great idea to see if there was a 24 hour place even closer to her parents house and there was another option that would save us about 15 minutes! We chose that option and went to get the script. Once there we learned that they were out. The tech called the other 24 hour store in the metro area to see if they could fill it for us and have it ready. After an extended wait she came back to tell us that they did not have the medicine either. All that maneuvering and in the end we still came up empty handed. We could have called the doc back and likely gotten it filled at Children's Mercy, but that would have been a couple of more hours at least and then we would have been pushing 11 p.m.! And besides that, the K-State football game was on and I was missing most of the first half! As it turned out, I should have gone to Children's anyways. The game was terrible, and a second night of sleeping without the med was not any better!

We finally got back to the in-laws house, got the kids dressed and ready for bed, and Elise's medicine given at 9:00 p.m. After a long day I fell into a chair and stared blankly at the game for the next hour and a half. I asked myself many times throughout the day, "is this day better or worse than usual?" In the end, I believe neither. It was a "normal" day for us. Somethings were a little better. Elise didn't have as many seizures, wasn't as sleepy, and the car rides were uneventful. Some things were a little worse. Elise hasn't been getting up, to stay, so early in the past several months. We have enjoyed getting to sleep more often until 5:30-6:00 each day.

So the next time we have that frazzled look when you see us at a function, party, meal, etc. just remember, I was out of bed for 7 hours and still couldn't get us out the door on time on this day. You never know how much someone has done before the sun even rises some days. I try not to think about it. That only makes me more tired.

Sometimes just looking at this crazy haired kid make me more tired!

Finding Support in Random Places

One of the many challenges of having a child with special needs is finding families like your own. I was struck by the randomness of this the other day when reading the Facebook feed of the Feeding Tube Awareness group. A parent posted something to the effect of: My child is 3yrs old. He recently had a feeding tube put in and is now being sent to get a iv port implanted into his heart for regular blood infusions every three weeks for the next 10yrs of his life. Are there any other parents that have experienced this? If so, any advice on what to expect.

This is just one example of the random requests that come across this page. This parent obviously has her hands full, and if she is anything like me, she is likely terrified! I know nothing about what she was looking for, so I had nothing to add. To my surprise though, 30 people responded! I was shocked! There were no, "I'm sorry you are experiencing this" posts. The responses came from real people experiencing the exact same thing ranging from dealing with it for just a few months to many years! This mom didn't likely learn that her neighbor was an expert in this area, or someone else in her family had gone through the same thing, but that other people around the country have had the same experience. Just knowing that you are not alone can be empowering in itself.

In our house, we are well aware that there are many others with far more difficult lives than we have. We never set out in search of sympathy. We do, however, frequently set out in search of someone that is experiencing some of the same things that we are. Unfortunately, there is no "awareness group" for people that have had leukemia, contracted a brain infection, acquired an uncontrollable form of epilepsy, needs to wear a helmet all waking hours, has all the skills to eat on her own but can't sustain her life by eating enough orally, etc., etc., etc. So, we tackle that elephant one bite at a time in search of whatever information we can find and whatever connection we can make. One group will have a single person or a small number of people with similarities, and another group will have the same. A lot of time that "support" comes in knowing that others are facing the same struggles. Frequently, others have many of the same difficulties and haven't found any solutions either. But, we have learned that others are out there!

With the HIPPA laws, it is next to impossible to connect to others with similar issues via any medical professionals. The very laws that are set up to protect our privacy also prohibit us from making some valuable connections. There are likely several people in every city that have gone through some of the same experiences, but the only way we would learn that is through some type of awareness group or non-profit organization. I was a "late bloomer" to Facebook as I just didn't see the value in it. At this point in our life, I really enjoy seeing what is going on in the lives of some people that I have known many years, but otherwise wouldn't stay in touch with. But, most of all, I really enjoy the connection to people that I have never met that are traveling down the same rocky road that I am on. I have always been told, "Networking is one of the most valuable things for you." Professionally, maybe this is true. Personally, I have found this to be one of the best tools to help me and others find answers. Who knows, maybe another connection will even come out of this post! That would be yet another random occurrence to add to the list.

Making Memories

Sign posted next to the playground by our campsite.

More than a year ago, after reading a book about camping, Abby told me that she wanted to go camping too. At the time I told her, "I'll see what we can do about that." In the back of my mind, I was really thinking, "there is no way I want any part of dragging Elise out to a campground and having to think about everything that would be involved in ensuring that she could safely "enjoy" this experience." What Abby asked for was in the back of my mind, but I really didn't consider it much at the time. Over the next several months I thought about it many times until coming to the realization that camping, for her, didn't have to include Elise as well. There was nothing wrong with her going camping without Elise. So, I made it my goal to take her camping!

I finally found a time that would work for us. We loaded our van and invited my brother Don to join us at one of the state parks at Tuttle Creek outside of Manhattan. On Friday night, we set up our tent, roasted hot dogs over an open fire, and hit the lake for some fishing time before calling it a night.

Walking to our first fishing spot

Fishing is a big part of many of my childhood memories and something that I really want to pass on to my kids. Like many parents, I often let life get in the way, and we just don't make the time for it that I would like to. It was one of my many goals to rectify that situation during our camping trip.

 Luckily for me, Abby loves to go fishing! She talks nonstop, doesn't sit still for long, and is always messing with her fishing pole. Generally, I don't mind any of it. I'm just glad to be sharing the time with her. In the week before we went camping, I heard many times on the radio, a song by Trace Adkins called "Just Fishin'". You can hear it here. As the song says many times, "she thinks we're just fishin'". I hope that someday she will have great memories of fishing much like I have with my brother and dad.

A rare picture sitting still

Our fishing spot for the first evening wasn't as productive as I had hoped for, but it seemed to please her just fine. It certainly provided Don and I a few opportunities to snap some photos at least. It wasn't too long after we started fishing and Don got his first bite. He was nice enough to convince Abby that he needed some help and got her to reel in his pole. The fruits of her labor was pulling in her first walleye of her young life. I'm not sure if she was smiling bigger or me, but it was pretty cool.

Her first walleye

Four fish later, we called it a night. Before going fishing, Uncle Don bet Abby that he would catch more fish and the loser had to buy ice cream. Not surprisingly, she won that bet (even if two of those fish were on his pole) and we had to stop for ice cream before returning to the campground. Abby spent a long time laying awake in the tent trying to figure out what each little noise was. She can be easily spooked and I wasn't sure how she would handle camping. But, she eventually settled in and got some good sleep. Much to my dismay though, she was bright eyed at 6 am when she wanted breakfast and to go back to fishing! Those were certainly 2 things high on my list for the day!

Caught all by herself!

I was surprised to learn, when I checked in to the campground, that they had a "free day" at the state park on Saturday and had lots of things planned for kids. I had a few things planned myself, and I really didn't want other events getting in our way. It turned out to be a good thing as we were able to supplement some of my plans by adding in some of their planned events. One Saturday, we enjoyed several hours of fishing in the morning followed by a stop at the shooting and archery range. The line turned out to be a bit too long for archery, but Abby really enjoyed learning to shoot a BB gun. There might be a future birthday idea in there!

She's not a bad shot

We followed up our shooting activity with a little time for her to play in the bounce house and caterpillar tunnel that they set up. She enjoyed the time to run and get out some of that pent up energy. Although, she was quickly becoming one tired little girl.

Ready to go swimming

After a short nap, Kelly and Elise joined Abby, Don, and I for some time on the beach. It has been an unseasonably cool summer around here. On Saturday, there was no sign of that unseasonably cool weather. It was HOT! A couple of hours at the beach was just what the doctor ordered. We enjoyed having Elise and Kelly join us. Don and I REALLY enjoyed the prolonged opportunity to stand in the cool water and feel a bit more refreshed. We finished our night off with some great chicken cooked over an open fire and of course we also had smores!

Worn out

Abby was so worn out she asked to go put on her pajamas by 9pm and she was asleep shortly after that time. It was a warm night, but a great night's sleep for everyone and helped us to go home on Sunday a bit more refreshed.

As I have thought back over the weekend, it was everything that I hoped it would be for her and me both. It was great quality and quantity time for both of us. She had my undivided attention and I had hers as well. She got to have some bonding time with her Uncle Don as well which was certainly an added bonus.

In the first picture above is the Kansas Children's Bill of Rights. I took a picture of a sign that was posted right next to the playground inside the campground. I was intrigued by many of the things that were listed and I was glad to see that we were accomplishing so many things on that list. It was great to disconnect from society even for just a little bit and immerse ourselves in our environment.

My ultimate goal of this trip was to spend some great time with Abby. The side benefits would be getting to take her fishing, sleeping under the stars, enjoying a nice time at the beach, and eating food cooked over an open fire. In the end, I wanted to make memories for both her and I. In the words of Trace Adkins, "I guarantee this memory's a biggin, and she thinks we're just fishin'." I look forward to doing this again someday. Abby is already planning our next trip.

For the record, I caught fish too! Abby enjoyed taking this picture.

A Glimpse Into Our Future

The last several years have been full of adjustments. Certainly, the last couple of months have been plenty full of their share of adjustment periods as well. We are in the midst of one of our newest adjustments now with both girls heading off to school in the mornings and Kelly heading off to work at the preschool. We didn't know what to expect, but it certainly hasn't been easy. For the first time in my working life, I am the last one out of the house. That has been quite a bit different in itself.

Abby came home from her first day of preschool with a scrapbook project that needed to be completed. She had a week to get it done and it certainly was nothing unreasonable. It was something that should be fun for her and fun for us. Her job was to select some photos of herself, her friends, her family, etc. to put onto the page to show some of her interests and hobbies. She could also use stickers, draw pictures, or whatever she wanted to communicate who she is. Unfortunately for her, her parents are sort of a disorganized mess and even getting off the ground was a chore. I thought it made the most logical sense for us to work on this right after dinner. We were all at the table already, we had a nice large clear space to put things out and this should be fun right????? Wrong!

To begin with, we have pictures everywhere! Now that we are part of the smart phone and tablet generation, we have things in multiple places and often times have no idea how to find any of it! I had some pictures on my phone and many pictures on Facebook that were not saved to my phone. Kelly had many pictures on her phone, some on Facebook, and even more on the iPad. Of course, we had to run all picture options past Abby. By the time she decided what photo she wanted, we had to go back and find it and usually couldn't remember where we had seen the picture in the first place. Once we found the picture then we had to decide whether to put them all together and have them printed somewhere (there weren't that many pictures) or try to print them on our new printer that only prints when it feels like it.

In the meantime Abby is talking a mile a minute, she is bored, wants to draw something, has bug bites, needs a kleenex, sure is thirsty, look there's a chicken.......Good grief! All the while, Elise is sitting at the table, having seizures, retching, and trying to get out of her chair to walk around. She is "confined" to her chair because her food pump is going but isn't working right. For some reason the pump has decided it doesn't like the new diet she is on and decides to alarm every 15 seconds. For two hours straight! Now, two days in a row! This is no exaggeration. Her 45ish minute feeding took more than 2 hours! Another good grief!!!! By the time we were done, about 8:30, Abby's project was mostly done (we still have another day to work on it), we were 30 minutes past bedtime, Elise's food was STILL not done. I was looking for a "Calgone take me away" moment. Honestly, I would have settled for anything take me away!

As I was sitting with Elise getting her ready for bed I began to wonder, is this what our future holds? Do we really have years of sitting at the table helping Abby with her homework while we have to stop every 15 seconds to deal with some medical issue for Elise? Like everything, I suppose we will get accustomed to it, but I sure don't like it! I don't like that we can't give Abby our undivided attention, I don't like that we can't give Elise our undivided attention, and I really don't like that we can't even give ourselves our undivided attention! But, this too will become "normal" over time.

As I was looking for a book to read with Elise before bed I came across a book that my parents had given our girls a couple of years ago. It is a recorded book that my mom insisted on them having. Her and my dad were not big readers, and I don't know that I ever recall them reading to our kids. But, they now have a recorded book of both of my parents reading this story to them. They will never grow up to know them, but they will at least get the joy of having them read this story to them. As I listened to the book it certainly helped to calm my nerves and I believe that Elise enjoyed it quite a bit as well. I know that my parents would have liked to know that they could help in some small way, and tonight they did just that for me. I just hope the book lasts. We have a lot of years of homework ahead of us!

In Only Seven Short Years

My first picture with Elise

August 16th marks Elise's 7th birthday. What an amazing, terrifying, and humbling ride it has been! I recently had the thought that I would write this post, but had no idea the true difficulty it would give me. There have been a lot of good and a lot of bad in that seven year journey. There are no guides to help us as parents maneuver these waters, and each day brings new surprises in one way or another. After combing through the photos several things have been pretty evident to me. 1) We sure looked a lot younger only 7 years ago. 2) There was a lot less grey hair then as well. 3) There were no shortage of pictures with people smiling. I believe #3 is the most important in all of this. No matter if the day has given us lemons or lemonade, Elise has always found a way to bring a smile to our face and left us in awe of the things she has been capable of.

Elise opening a present on her 1st birthday

Elise has always been inquisitive and persistent. We have come to appreciate her persistence in ways we didn't even know were possible. From the beginning she would focus all of her energy on a task and continue with it until she could figure out how to do it. She was rarely frustrated, but always determined!

Finishing off some cake on her 2nd birthday

Fortunately for us, we never really experienced the "terrible 2's" with Elise. She was always up for being a bit ornery, but well short of terrible. As you can see by that smile, she was always planning something to push the boundaries a little bit.

Elise sitting on her Tinkerbell couch for her 3rd birthday

Little did we know, her 3rd birthday was the start of one of her most difficult years. She got to "enjoy" her 3rd birthday in the local hospital. She was experiencing some odd and unexplainable symptoms that would later turn out to be leukemia. As you can tell from the bandage on her arm, she had just been released from the hospital the day this was taken. That didn't keep her from putting on a big smile as she opened her gifts!

Celebrating her 4th birthday

A lot less hair, but a lot more to be thankful for on birthday number 4. There were many times over that year when we weren't sure she was going to make it to this day. But when she did, it was certainly cause to celebrate!

Elise on her 5th birthday

Many more challenges in year #4, but we were impressed by some of the progress that was made in that year as well. This was the year that seizures began to show and we learned that she would need to "medically accessorize" with the cool pink helmet.

Making a mess for birthday # 6

Elise didn't have much interest in eating this year, but she was always up for making a mess! Kelly spent a long time working on some special cupcakes that she could eat being on the Ketogenic diet for seizures. The diet didn't work and unfortunately, the cupcakes weren't much of a hit with Elise either.

Now, as another year has passed, I can look back and see the many changes that have taken place over the year. Some are so subtle that we barely even notice them until looking back at pictures and events, and some are evident to us every time we go out into the world for whatever the day happens to bring us. As you can see from the pictures above, the one constant in each picture was the smile on her face, and the smile on the faces of those around her. With all she has faced, if she can still look life in the eye and smile, there is no reason that we can't do the same. She has taught us that each day can be tough, but we still need to get up, put a smile on our face, and find someone who needs to have a little ray of sunshine in their lives. I look forward to seeing that smiling face in the morning and am glad that I have that little ray of sunshine each day.

Happy 7th birthday Elise! I can only hope that she truly knows how much her parents love her.

 

Charting a New Path

It has been a REALLY long time since my last post! Interestingly, I have actually missed writing a blog. In all honesty, life has been very busy and hectic since my last post more than two months ago! To get you up to speed, here are some of the highlights of the past two months.

• On June 8th, we moved from Shawnee, KS to Manhattan, KS ending our 18+ months of living apart. No more Skype conversations with my family, no more unreasonably early Monday morning drives, not as many fast food meals, and tons more time to laugh with my family and reconnect with them all!
• Elise made numerous trips to the ER (four I think). Our first trip to the Manhattan ER was only on our second full day of living here! She had stitches in her chin three times and a terrible looking bone bruise on her ankle. As always, she is a trooper though. We have begun to familiarize ourselves with the ER staff at our new hospital. They will get to know us well! They took us in stride and treated her very well.
• I worked a conference in Philadelphia for a week right after we moved to Manhattan. It was a difficult time to be gone, but a great conference nonetheless. I left a house full of boxes that needed unpacked to go to a hotel full of boxes that needed unpacked for the conference. By the time I came home, I really didn't want to see any boxes again. Sadly, many of them are still in their original landing spot from the day we moved in! We are working on that (sort of).
• Elise went to Camp Hope for the third straight year. Because of her rough sleeping history, Kelly went along and kept Elise at a hotel for a few nights while she went to camp during the day. I think Kelly enjoyed the alone time during the day. Elise always loves being at camp. Abby enjoyed the time away as well as she was the center of attention with Uncle Don and Aunt Tammy for several days.
• We took about a 10 day vacation to northern Michigan. This was shortly after I returned from Philadelphia. No need to get used to sleeping in my own bed too early! We enjoyed the cool temperatures, time with Kelly's family (they all ended up at the cabin on the 4th of July), and spending time on the boat. It was a great way for our family to begin reconnecting after being apart. I really enjoyed that time and I think it helped us as a family immensely.
• After two full weeks of sleeping at home, I went back out on the road to a conference in Las Vegas. This was one of the best conferences I ever attended. This was the annual conference for Meeting Planners International. Lets just say that a conference for planners, by planners, with nearly unlimited resources, was way over the top! Live performances by Billy Idol and Dierks Bentley, a night of poker with several of the pros from the World Series of Poker, unbelievable sessions by some of the most respected people in the profession, in a city that is known for doing everything over the top. It was exactly that. I had some interesting experiences while I was there. I am hopeful they will be fodder for future blog posts in the near future.

For the most part, I think that brings us up to today. I'm sure I missed some important things, but above were some of the highlights off the top of my head. One of our biggest summer highlights might well happen on Monday. For the first time in 5 years, Kelly is going back to work outside of the home! She was very fortunate to land a job as a new preschool teacher at the Junction City Church of the Nazarene Preschool. She appears to be excited about the opportunity and I am sure is looking forward to some more mentally challenging activities. She won't be able to stay in her pajamas as long everyday, but she doesn't have to dress up much either. I think that is a win/win on both sides! I am ecstatic that she feels comfortable enough to take this leap and I am hopeful that it is all that she dreams it will be. Abby will also begin attending the same preschool when it starts in a couple of weeks. She is looking forward to "going to school" and I am sure will enjoy learning from someone new and making new friends as well. Elise will be in first grade in the Manhattan schools when they start in a couple of weeks. It is unbelievable how quickly time is flying by some times!

As you can see, there has been a lot of activity and a lot of change in our lives since I last posted. We are hopeful that it is all for the good. We look forward to the new routines ahead. Even a year ago we began wondering out loud if Kelly would ever really be able to go back to work again with the many issues that Elise was having. Each year has shown us slow and steady progress with Elise and the time has come to shift some of our attention back to ourselves and each other. We are fortunate to not be faced with continuous doctor appointments, hospital stays, and ER visits. Who would have thought 4 ER visits in 2+ months was progress!?!?! We are thankful to the many people that helped us move (both in KC and in Manhattan), the many people that have watched our girls and helped us along the way during this several month transition, and for the many people that have and continue to pray for our family. It is all appreciated!

The Blessing of Cancer?

I was recently introduced to a video that captivated my attention. It had some pretty profound statements that I have only heard come from other people that have been personally affected by having cancer in their life. Whether you are an adult with cancer, a child with cancer, or a caregiver of someone with cancer, your life has been so drastically and eternally altered that most people just can't comprehend.

Zach Sobiech, an 18 year old young man from Minnesota passed away this week after battling cancer for several years. After being given only another year to live, Zach did several things that are going to leave a lifetime of memories for his family and friends. One of the "legacies" he left behind, was a song that he wrote and recorded called "Clouds". Click the link to watch a video of the song. In addition, a great video was put together as a tribute to his family and those that have most closely affected his life. It's a pretty lengthy video, but certainly worth the time. Grab a few tissues and check it out here. It is particularly powerful near the end of the video when he tells his family members, one at a time, what they have meant to him. Amazing stuff! We should all learn that you don't have to be dieing to do something like this.

In the video, incidentally titled "My Last Days", there were several profound statements. Several amazing things had previously taken place in the video. Many of those things sparked the first statement when someone told him, "This stuffs not happening because you are dying. It is really because of the way you're living." I can't think of one cancer family, that I have come in contact with, that hasn't heard a similar statement said to them as well. As often happens in cancer families, very generous people come out of the woodwork to provide meals, money, special memories, and much needed emotional relief. The reason, I think, is mostly due to the second profound statement in the video. "That's one of the blessings of cancer. You kind of come out of denial. In doing that, things are better. Life is richer, everything means more, and beauty is more beautiful." We spend so much time being devoted to our day to day life that we become too accustomed to our surroundings. If you are like me, you probably take almost everything for granted. Until, one day, something happens to change your perspective.

As I think of the struggles so many families are facing with the terrible tornadoes that hit Oklahoma yesterday, I am acutely aware that it isn't just cancer that can deeply impact a persons life. Tragic circumstances often bring out the best and worst in people. Fortunately, there are so many great things that come out of tragic circumstances that we are able to more easily see past those that have brought forward the worst aspect of humankind.

I don't know that someone can be truly prepared for the worst possible circumstances in life. Looking back at my life, I know that I have made some pretty drastic changes to the way I handle myself and interact with others since experiencing cancer with Elise. It's not a matter of judgement of my "old" self, or how I think I am expected to present myself. Rather, it is a choice to see that life truly is richer, means more, and everything is more beautiful. We all slip from that view sometimes, but I try not to make that slip a habit.

"Life is really beautiful moments. One right after the other. It's really simple actually. Just try and make people happy!" - Zach Sobiech - 2013

Returning to a Magical Place

A couple of weeks ago I took a whirlwind tour of the southeastern U.S. After finishing my work on Friday afternoon, I turned my rental car south and headed to serve as a volunteer at Give Kids the World (GKTW) Village just outside of Orlando, FL. In case you missed this update in our life back in 2011, this is the place our family stayed when we went on Elise's "Wish Trip" with the Make a Wish Foundation.

Give Kids the World Village is a 70-acre, nonprofit "storybook" resort, located near Central Florida's most beloved attractions, where children with life-threatening illnesses and their families are treated to week long, cost free fantasy vacations. Next to Disney World, this is one of the most magical places that a child could ever experience. The village is laid out to be like a life size version of the popular board game "Candyland". There are many unique aspects of life that you get to experience when you have a child that has experienced a life threatening illness. Most of those aspects are not near as amazing and enjoyable as Give Kids the World Village.

I was not prepared for the flood of emotions that I felt when arriving at the village. I was excited to return and "pay it forward" to an organization that had provided some great joy to our family. My first stop once arriving was to stop outside the chapel and get a quick picture of "Tyler's Mailbox". You will see it pictured to the right. I don't remember the exact story behind the naming of the mailbox, but I'm sure you can imagine the impact it has on the families that experience GKTW. Many families that get to experience this magical place, are on their last getaway with their sick child. For many there is no cure, no time, and no hope. The mailbox serves as a reminder that there is always hope. For all the things you cannot say to other people, you simply put it in a letter to God and drop it in the mailbox. Nobody ever reads it, but the power of turning over all of your fears, worries, and cares is an empowering thing. I wish I had thought of something like this a lot earlier in our journey with Elise.

Abby riding the carousel at GKTW in 2011

My time as a volunteer was spent running the carousel. I have some kind of strange love for the magic of the carousel, so this was as close to my dream job as I am ever going to get. While I can be a fairly outgoing guy, that doesn't come real easy to me when dealing with little kids. I was fortunate to be paired with a lady that worked as an entertainment director for Disney World. She was in her element to be out drumming up kids to ride the carousel and really got them excited. It wasn't hard to find riders as the carousel is located right across from the dining hall.

As I sat outside the carousel waiting for my trainer to come and teach me how to run it I got to observe many families that were walking around the village. As I watched them I imagined that we must have looked much the same way 18 months ago. All of them looked tired. After months or years of struggle, life had caught up to them all. The hectic schedule of an amazing free vacation added to their weariness, but this is a whole different kind of tired. Life had dealt them a pretty difficult hand and the opportunity to escape the struggles, even for a few days, brings a kind of relief that I cannot even begin to explain. While there were some kids full of energy and running all over, there were others that were thoroughly exhausted from their busy vacation schedule and others that were simply too sick to have much energy. But, they were all there enjoying their vacation for all it was worth. All families are in a very similar boat. It is one of the few places I can recall being totally comfortable that everyone you encountered had a deep understanding of the struggles you face.

I served my four hour shift as a volunteer. I helped dozens of kids get buckled in and waved and smiled with them as they went round and round. There was no limit to the number of times that a child could ride the carousel and some could have ridden for hours if there wasn't so much other fun stuff to do. When my shift was over, I went to the building next door known as "The Castle of Miracles". Inside that castle is a star placed by every wish kid that has ever come to the village. I wanted a picture of Elise's star from our trip in 2011. They had given us a picture of it before we left the village at the end of our trip and had shown us where it was placed. But, it was important for me to see it again and get that picture. You can see her name on the star in the middle of the picture.


 I left the village that night at 10:30 for a three hour drive back to my hotel. It gave me a lot of time to think about what I had experienced and how much my own life has changed even in that 18 months. On our trip, Elise was not strong enough to walk any kind of distance and spent most of her time in a wheelchair or a wagon. She frequently had cold temperatures and was getting sick a lot. She didn't have the strength to sit up on the carousel much and she didn't really want to sit in the wheelchair on the carousel either. When I look back at that experience I can see the progress that has been made. It has been slow in many areas, but it has been progress. I can say, after going on that trip we were motivated to carry on in our battle to improve Elise's quality of life. We will likely never be able to duplicate a trip like this for our family again. In the end, I don't know that we would want to. This was one of the most enjoyable experiences of our life and helped us to create a lifetime full of memories in just a few short days. If you are ever in the Orlando, FL area, you should stop by GKTW Village. They are always looking for more volunteers to fill their roughly 1,200 volunteer shifts per week! Last year they surpassed 2 million volunteer hours that have been served since they opened in 1989. Check out their website some time when you get the chance.