Team Peters: Recent Episodes
Chris Peters
BASED IN STILLWATER OKLAHOMA, TEAM PETERS IS A BLOG BY CHRIS "TECH WZRD" PETERS. POSTS EXPLORE THOUGHTS FROM HIS KIDS TO HIS COMMUNITY. THIS SITE ALSO ACTS AS AN ARCHIVE FOR FUTURE GENERATIONS.
My perspective on masks after visiting Santa Fe, where the state of New Mexico has had masks requirements, and how I saw different businesses adopting the rule. I share how their restrictions actually helped Kara and I’s confidence to enjoy our vacation while being safe. I also share some photos of our bicycle ride on the Santa Fe Rail Trail.
I finished the Mid South 50 mile ride. To say it was hard is a vast understatement. It was rainy, muddy, and cold. Everything I’m told it usually is. So yes, it was hard. It was also surreal, exciting, and completely badass. I had a lot of firsts on the ride. My first event, first real group ride, first time riding in the rain, the first time in real mud, and the first time I crossed a finish line with Chris Peters.
Some of that is less surprising when you consider I just started riding bikes a year ago. Chris had just moved in and would take George and Ainsley on rides around the neighborhood. He quickly realized that Evie hadn't yet learned how to ride a bike. After getting her on board to try, he prepped her tiny bicycle for the test. He taught her in about 10 minutes, and he won the first little piece of her heart that day. Shortly after, I made a comment about wishing I could ride bikes with them around the neighborhood. I’m 5’1 on a good day, so finding a bike that fits is a bit of a challenge. In no time at all, there was a borrowed bike in the garage. Now I had to actually follow through. 😬
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Chris helping Evie on her first ride.
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George shared his bike with Evie.
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She rode 2 miles to her school on her new bicycle.
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Kara's first ride around Boomer Lake.
The first ride was just around the neighborhood. It was fun, but it was work. We put in some time and effort to build up my strength and confidence on the bike. I stayed with it because it was honestly fun, and I loved the time with everyone. I also enjoyed solo rides. A little me time was a good outlet for me. Seeing my strength build in the following months was a welcome outcome. It let me go faster, further, and for more extended periods. I saw changes in myself and got really into tracking my rides to see the stats.
But it was never about exercise. Chris did a lot of things perfectly right as he dropped the breadcrumbs for me, but most notably, he made it solely about our experiences together, and that was the primary key. His acceptance of me as I am has always been an enormous comfort.
We started with rides around the neighborhood and around Boomer Lake. Soon I was ready for my own bike, and I wanted an ebike after watching him fall in love with his. We settled on my Aventon, and we were ready for adventure. I think everything sounds better when you call it an adventure. We started riding our bikes to brunch and to picnics at theta pond. Mimosas and bikes. 👌 I found having a destination, or a planned stopped was a big factor for me. Not being a typical cyclist, I wanted a more touring experience, and Chris was on board. He was very supportive from the beginning and genuinely enjoyed seeing me happy. Chris also liked finding me all the right bike pieces, any little thing that would make the ride more enjoyable. He still spends some time watching me on each trip to make sure everything is working for me. I have a tendency to accept things as-is, and he has a tendency to fix things, so I benefit a lot from him. 😊 I also introduced some of my own ideas, including better snacks, wine, and camping, which all went over well.
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While we were lying in bed one evening, Chris asked if I would consider The Mid South gravel ride. I said, “Sure if I can ride my ebike.” Luckily the 50-mile course isn’t a race like the 100-mile, so we were set.
I’m still not sure I ever really thought I’d do it, but March 14th arrived, and I was committed. I had done some long rides, and I had even completed a 50-mile ride just a month or so before, which was fantastic and a real high for me. It was a beautiful day, with beautiful weather and delightful company. Buuuttttt, it turns out that did not prepare me for the Muddy Mid South. It did, however, give me enough confidence to go for it with Chris by my side.
The morning finally came. I was dressed head to toe in baggy rain gear, some of which I fought, but man was I thankful for Chris not giving me an option. Sometimes he really does know better, but don’t tell him. 🤫 Setting the course conditions and weather aside, I was overwhelmed by the number of people, and we changed our plan from starting in the front to lining up at the back. We started behind the pack, and before leaving downtown, we stopped for coffee to let the rain die down, also a perfect decision.
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Mid South 2020 was the hardest athletic event I have ever done. The conditions were daunting, and the roads were grueling. I was amazed at myself and my ability to push through. Turned out, I was stronger than I thought, and I was grateful for every training ride. Every time I thought I couldn’t get through that section or I couldn’t get up that hill, I just kept pedaling. I am immensely proud of that ride, but the pieces that made it great were that we together, and we did it our own way. We took our time. We stopped for wine breaks, which was basically my treat to keep going. 🍷 Proper motivation helps. Chris scraped a lot of mud that day, and I don’t exactly know how my bike made it through some of that gnarly stuff. We ran out of battery in the last 2 miles and crossed the finish line on empty tanks, but full of emotion. I felt on top of the world, with Brett Stevens screaming for us as we turned the final corner. Crossing that finishing wasn’t like anything else I have ever felt. I wouldn’t trade a single second of it, especially the moment Chris and I crossing that finish line together. He is a lot of things in our biking adventures and in this life. He is my biking concierge, my mechanic, my support, the one I want to share all my joys with, and, most of all, my partner. ⚡️ 🚲 🖤
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Today I’d like to share a short version of how I got involved with the local gravel cycling community and how I went from commuter to ultra endurance mega stoked athlete AKA regular person riding bikes all day.
In January 2013, I began riding bicycles on the gravel roads around Stillwater. I had been commuting to OSU's Student Union for work on a Trek Mamba 29er mountain bike for almost two years. The first of many bicycles I would purchase from the Wintles at District Bicycles. I didn't really have any interactions with the bike shop and their shop rats before I was told by my employee Trevor Steward that I could ride my bike on these gravel roads. Though I had since learned that period is when the Land Run 100 was birthed. I don't need to repeat their origin story, but I will say I missed out. I would have met some of my future friends a bit earlier, which would have been interesting. Especially shop fly Mr. Adam Gribben. Whom I believe did a lot of the early gravel road scouting with Bobby. On a Surly Long Haul Trucker no less.
My work commute was only 3 miles round trip. Getting to 100+ wasn't even really in my realm of thought. Like ever. Trevor told me about a group ride and got me in touch with Jimmy Bruer. He was leading a 35-40 mile group ride. So I showed up. Wearing my Chrome commuter SPD (clip-in) shoes, jeans, and coat. Not a jacket, a full-on coat. Hey, it was January and coldish.
This was my first group ride. I didn’t know any rules or the lingo. Turns out there is really not much that you need to learn. The entire group stayed together as we went south of Lake McMurtry. I looked at my phone and saw we had already traveled 8 miles and I felt great. Then we turned North. The hills slowed me way down. Most of the group road away. Jim, however, doubled back to check on me. It wasn't a no-drop ride, so he wasn't obligated to do this but he knew I was new and wanted to make sure I was going to be okay.
As you can see in the image below, at 23.7 miles, I was done. I learned about leg cramps that day. I would continually battle them for years while riding these stupidly long rides.
Yeah, I bit off more than I could chew and had to ask Andrea to rescue me. She learned what being on the support crew was like early on. She was and is fantastic in that role.
You'll notice this first gravel training ride was January 3rd, and the race was March 9th. I squeezed in almost 300 miles of gravel training rides before race day. My daily commute by bike to work was vital. It may have been only one and a half miles each way, but it counts as time on the saddle. I recorded about160 miles of commuting in that period.
Finishing that first year turned out to be a pivotal moment in my life. Letting me be apart of a new and growing community. It also gave me confidence mentally and physically. That confidence would get me signing up for a future of torture on the bike. #thisisstupid #teamcockroach
I've participated in this local race multiple times. Finished 3 of 4 attempts. Fed a ton of fellow riders BBQ one year and opened a thousand ice-cold Mid South IPA beers for finishers the next year. By the way, volunteering for just race day is MORE tiring than doing the 100 mile ride.
This year's race won't be like any year before it because I have the honor of riding with Kara. We are riding in The Mid South 50 miler. It's a non-competitive ride while the 100 miler is a race. Well, for some. For most, it's a race against yourself. It's a challenge for everyone who toes the line. Newbie or Pro.
It's been fun seeing her confidence grow as we put in some long rides. She is ready to do this. We are prepared to enjoy the day and ride our ride. #partypace She's not even scared of the potential cold rain!!! #notme #iRemember2017 #iFroze
Now the potential mud isn’t something is looking forward. #herestopushingbikes
PS If you haven't yet. Go to landrun100.com and read about the name change and why it needed to happen. Better yet, read and listen to the linked Podcast and Book. Also, check out midsouthgravel.com for details about the race.
It's beyond time to introduce Kara and, by extension, her daughter Evie. We have been dating for almost two years and living together for one. While there are many things I hope to say and share about our relationship, this post will focus on one aspect that I didn't go into the relationship expecting. The joy of riding bicycles together. Any believers in "bike magic" are probably chuckling right now.
I didn't want to put any expectations on our new relationship beyond learning to discover who we are. We do our best to practice grace and open communication with each other.
I didn't outright push her to ride a bicycle, but I did leave the door cracked open with some breadcrumbs leading in. So what made her step through that opening and go for a ride? I'm hoping we can get that answer in her own words, but I don't have to guess, and you probably don't have to guess either. The answer is simple. It was an opportunity to quality spend time with me. This is true for any healthy relationship.
It only took a few rides around the neighborhood to see that she didn't hate it. We built up to riding around the Boomer lake trail. A three-mile ride. Then we rode from the house to the Boomer lake trail and back. A five-mile ride. She was blown away by her own efforts. I knew she was hooked when she got up at 6 am to get a ride in by herself. Recording ride data and stats in Strava has also helped her motivation by seeing those numbers add up.
At the time, Kara was riding a borrowed fitness style road bike with skinny tires. Which aren't bad on pavement or paved trails, but they were not going to cut it for any rougher road surface, like gravel :) She was also ready to invest in her own bike.
I had just sold my gravel race bike and purchased the minivan of bikes. A used electric-assisted mid-tail cargo bike that allowed me to commute to work on and haul the kids to school on. There will be a future post sharing my full experience with the RadWagon, but to sum it up, riding an eBike is the same as a regular bike. You can cover more distance with the same amount of effort. Or you can arrive at your destination quicker. It's up to you. No different than an acoustic bicycle in my experience.
Kara is deceivingly full of adventure. She wanted to be able to do longer rides, which around here means riding on gravel roads. Go on some bike packing trips, which was another thing I had been wanting to do for years. So we started looking for a bicycle that could be a commuter and adventure bike. Seeing my eBike experience, she wanted to go that route as well.
We found the Aventon Pace 500 that had a small enough frame with room for large tires, enough speed to keep up with car traffic, and it was also within the budget.
One of the first long in town rides was to Theta Pond on campus for a picnic, then to Downtown, then to Couch Park, and back home for a total of seventeen miles. Stillwater got much smaller with our eBikes. The ability to also carry whatever we wanted without a weight penalty was tremendous. Especially when she discovered we had room for wine.
For me, this was also a new bicycle experience. Riding was no longer just about long distances and seeing how much pain I could ride through to get to the finish line. Riding was now about us and the moments spent together.
We found having a destination was also crucial to our experience. Our first destination ride took us to Keith's Bike Fort in Perkins, Oklahoma. This thirty-mile ride consisted of in-town roads with a long gravel stretch and a brief yet scary section of the highway.
At the Bike Fort, we enjoyed the best wood oven-baked pizzas in Payne County and learned about bike magic from Keith. It was a beautiful day together that solidified our love for bike adventures together.
It's been amazing to watch Kara grow as a cyclist. I have no doubt she could do whatever distance/time she wanted. She sets goals and achieves them. I'm just along for the ride. Like a bicycle concierge that makes sure she is set up for success.
This is just the beginning. Kara has already begun building up a second bike that will be the ultimate adventure (or whatever else she wants/needs it to be) eBike. I'm going to be so jealous. I hope I'll be able to keep up with her. ⚡️🚲+ 🍷=😻
Today I am starting a technology consulting business catering to local companies and brands. You can check out the new website wzrd.tech, and you can also follow Tech WZRD on Facebook.
I specialize in beautiful yet functional websites that connect to eCommerce, retail point-of-sale, digital marketing tools, and social media.
If you or someone you know needs the service of a wizard, I appreciate sending them my way.
Two thousand and seventeen has been a roller coaster ride of a year.
Harder.2017 has been a hardening year for me.
Realizing the person you've partnered with to get through life was better off with someone else. Andrea and I's path was diverging. Separation finally needed to happen. There's no guide on how a divorce should work, but I think Andrea and I did the best we could for our particular situation. A lot of learning is happening. We might be learning more about relationships apart than we ever did together. Divorce is inevitable, but Andrea and I are still a team for Ainsley and George. She's not a co-captain of Team Peters anymore; She's a Co-Parent. We will do our best to share in Ainsley and George's lives with a 50/50 amount of time but with 100% effort from both of us. They are our most significant responsibility.
And for those who want more details about our separation, I would suggest contacting us each privately. I will openly tell you what I can, but trust me; at this point, the details do not matter. It's better for everyone involved.
Work. 1907 has been the most challenging "job" I've ever had. This is the right kind of challenge. So much potential; the most potential for me personally, but I'll have to work harder than ever. This 1st year is a hardening year. You can't get Better, Faster, or Stronger without being hardened first. It's very similar to ultra-distance gravel cycling for me. To go the distance, you have to increase the load of pain your body can endure.
Better.2017 might have severed a marriage, but it also brought new friends and closer/more real friendships. Most of those friendships were very valuable to me during the hardening process, that was 2017. Two were all-stars in supporting me by letting me do what I needed to do.
I have been on a fast track of education about how agriculture and the meat business works. It's not textbooks; it's on-the-job learning, and that's how I learn best. If I see it in detail, then I can understand it. I feel I've become a better learner and listener this year.
I'm better at understanding myself and how I work. This was very useful during some rough storms. I stayed calm and made adult decisions. I guess I'm generation Xennial now (1978)? Just like millennials, we don't like #adulting, but we can do it when needed.
I rode a better DK200 in 2017 than the previous three years. In reality, I just bought a better bike, a "cheater bike" if you will, the Cutthroat. That bike makes everything about riding on gravel better. Comfortable. Stable. Confident. Has the ability to get going when you decide to mash it. Like a Fargo and other bikes in the drop-bar MTB style are the best for gravel grinders like me who are not racing. We would never dream of a DK podium. Finishing is always the first trophy because it's the top priority. Not beating a friend but beating yourself. Although sometimes you do happen to beat a friend and you tell him about it, often. #1stGravelGrailinStillwater.
I've been a better friend to some but not to all. People come and go in Stillwater. Most go, or they don't stay long; the effect of being a University town.
Faster.I rode my bike faster at DK, so that counts. In my work, I've found that I enjoy adopting and integrating systems to make the business more efficient and effective. I'm making some decisions faster because they require urgency but learning to slow some decisions down to take time to learn and understand. If you are ill-informed, then you will make mistakes.
Stronger.I don't know if I'm stronger yet. Real strength takes time, but I don't think it will be too far away. If 2018 goes the way I want it to then yeah, I'll be stronger. I'll be stronger as a dad, as a manager, and as a friend. Maybe stronger on the bike too. I'm ready to crush 2018.
No One Fights Alone
We recently received a letter from Anastasia, an ally who met Ainsley at Bennett Jam in 2014.
Ainsley and Anastasia.
What is Bennett Jam? From their Facebook event page: "Every year, Oklahoma State University’s Residence Hall, Bennett Hall, hosts an annual benefit concert, open to the public and free of charge, called “Bennett Jam”, in which all of the proceeds go towards a Stillwater resident in need."
Ainsley was the resident in need in 2014. You can read a little about it here.
Anastasia shared with us how her father, Marcus, was currently battling stage 4 throat cancer. I asked her and her father if it was okay to share her letter and his story, because it reminds us and inspires us that there are many battles out there being fought daily.
Dear Peters Family,
I'm so blessed to have met you guys at Bennett Jam back in 2014. I'm so happy to see pictures of Ainsley looking so happy and healthy. Like I told Andrea, my dad was diagnosed with stage 4a throat cancer at the end of March. To help with medical bills and raise awareness, some ladies from church made bracelets! "No One FIGHTS Alone!" That has been the phrase that we all caught on to. I know Ainsley has her allies and support system. Having a support system is so important and I know that it helped my dad get through radiation and chemo. My dad's name is Marcus Cunningham. I would be honored if you would wear these bracelets for him, Ainsley, and others fighting the battle.
On September 13th my dad goes for another PET scan and on September 15th we will find out if he is cancer free or what the next step is! If you could say some prayers, that would mean everything to him and our family! Thank you for the support!
Love, Anastasia Cunningham
Anastasia, Marcus, the Cunningham family, and friends, WE are HONORED to wear these bracelets. No one should ever fight alone in this world. WE are PROUD to join you in your fight.
I don't know if this is "expert" parent advice here. Take it or leave it. It makes sense to me.
iMessageAinsley is not old enough for a "real phone", but she has been wanting one REAL bad. Not like I'm going to throw a tantrum if I don't get it bad, but like I'm going to ask oh, every month or so for awhile. Lately I have noticed her desire for a phone is ramped up. It wasn't until I understood why she REALLY wanted a phone.
She doesn't want it to watch YouTube or play games or watch shows. She wants it to TEXT! if you know Ainsley, you know, she is super social. [She didn't get it from me.] She wants to discover the world and meet everyone in it.
One nice thing about iMessage is that it doesn't need to be tied to a real phone number. It can freely send messages within its own network. Think AOL Instant Messenger. If you know the other person's AppleID name then you can initiate a message. By the way, this is why the Apple platform is better for privacy. Apple doesn't make your user name public. There is no search box to type in names like Facebook or any other social network or messaging service. Just like it's pretty hard for one person to know another person's phone number. You'd have to be a hacker/creeper. Finally, Apple has a decent solution to children's accounts. You can learn more about at https://support.apple.com/en-us/HT201084
I say all of this because I feel Ainsley is safe messaging us in this system and is in no way going suddenly communicate with strangers. It will stay very locked down to communicating with just her parents. Not even friends yet. Plus, you really don't want her to have your number anyways. She'll message you to death if you let her.
Texting-Typing-Dictating"Text messaging" your child for the first time is an interesting experience. It's a different voice, in a different medium. As you can see above we have had some sweet, from the heart, conversations.
I did tell her she can't message me until I get home, unless it's an emergency. The next day I almost immediately received a text message from her as soon as I got home. You can tell she had been waiting all day to send me a message and show off a new feature she discovered. Like the effects and drawings you can send.
You can't see the animation of her drawing it because I didn't think to save it at the time but she admired that it was originally supposed to be a face that then she realized looked more like potatoes swimming.
She, of course is loving it so far. I know her and Andrea have been swapping a lot of messages too. As her parents we are her inner most network. I am trying to prepare her to communicate well via these "texts" and use proper grammar. No short hand. She can learn that later on after she knows how to write pages of proper paragraphs.
P.S. English and Grammar were my worst subjects in school. Especially in high school. But you woudn't be able to tell by my report card. I had the same English teacher my 10th & 11th grade year. I got straight A's. Easiest class ever. Later, in life I slowly learned that teacher robbed me of some important skills. My kids will not be robbed of those basic skills.
Dictation though is something new that I didn't have growing up. "Kids today" have an advantage of growing up in this age of voice dictation and digital personal assistants (Siri, Alexia, whatever Google's and Microsoft's are called). I think it's possible for "kids today" to learn how to do more than just hand write & type. They will learn how to dictate and use voice commands. The technology is only going to get better and cheaper. It's ubiquity will win out. That's Amazon play and many other tech companies.
It's been fun seeing Ainsley grow and mature like this. I know the teen years are still far ahead but Ainsley tells me she won't be like those crazy teenagers when she's a teen. lol <<<<< That's text speak Ainsley and George. Don't do it! Emoji's are cool though.
Sometimes being a Dad is hard. But we Dad's love to figure out how to make our jobs easier. Being a Dad is just a series of life hacks. What new problem can I solve today?
Enter today's problem, "cooking dinner" for your kids.
When you are spoiled with a wife who cooks/buys/drive-thrus 99% of what goes into your kids stomachs, it can be hard to suddenly be the nutrient provider.
Enter 1907 Meat Company.
Step 1: Walk into the store and buy steaks of your choice.
Step 2: While you're there buy pre-made sides like the cheesy potatoes casserole.
Step 3: Dessert is also available. Like homemade cheese cake and gelato from Bluce Spruce. You made need this as a negotiation/bribery tool later.
Step 4: Pay with your phone. Apple Pay. Android Pay/Wallet or whatever Google keeps changing it's name to. It's pretty futuristic but not perfect.
Step 5: Google search reverse sear steak methods. Oh and use a good meat thermometer. 1907 has them for $10. At the same you can bake the cheesy potatoes.
Step 6: An hour later eat. Don't forget desert or your kids will remember it right before bed time which means bed time just got thrown out the door.
Step 7: Sit back and drink a beer or two between the cook times. Mission accomplished. Life hacked.
Ainsley's pick. Sirloin steak.
Enjoy satisfied kids and extending their existence.
She's a fan. The sirloin was very tasty.
The only seasoning I applied was sea salt.
George picked a shell steak. AKA a bone-in strip steak. He made the right choice.
Cheesy potatoes took a little bit longer than the steaks to cook. But just a few minutes.
350 for about 45 minutes. Easy.
Don't bust out the nice plates.
Warning the blueberries could be a mistake. Especially if your kids are still in the messy for no damn reason stage.
George is our sweet tooth.
Why did I write this? Duh. To prove to my wife I actually take care of the kids when she's gone.
I am so grateful to have been able to go on this adventure. Especially with such good friends. Riding bicycles in the eastern part of Idaho that meets up with West Yellowstone was amazing. The scenery and route that Jay Petervary put together was truly epic. To think that this is his backyard where he and his wife live and train was so cool. If you don't know who Tracey and Jay P. are then let me just tell you that they are endurance cycling legends. Thank you JP, T-race, and your volunteers for putting on such an awesome event.
I'll let the photos tell the story.
After cruising through Kansas and Colorado we stopped in Victor, ID for an overnight in Fitzgerald bicycles parking lot. They made us some fine coffee before we left.
The best part of traveling in an RV. Sleeping comfortably while someone else is driving. Bobby took that to the extreme on this trip.
Brett, Trevor, and I hung our bikes in the Salsa tent. Right next to JP's el Mariachi.
Friday night we should of been finalizing our setup for the ride in the morning. Some of us were more successful than others.
My selfie attempt while riding my bike up a 9 mile paved climb. The visibility was maybe 30-40 feet. We were riding into a cloud and you can see the water accumulating on my beard. I would wear my Oklahoma "winter" riding gear all day. Boo hoo ;)
These fire roads are so nice to ride on.
This photo doesn't even begin to capture the breathtaking scenery we were surrounded by. It's also hard to take photos flying 25 mph down a mountain.
I love how clear and clean the water is up here. You could hearing water running almost throughout the whole day. It was like those nature sound CD's you get to fall asleep to.
Obligatory bike shot.
My Salsa Beargrease didn't fail me once.
The Aspen's where in full fall yellow. The color was so bright it looked neon.
Riding through the valley at the foot of the mountain which the locals call the foothills. Their mountains to me damnit!
Seemingly endless switch backs climbing up this pass. Soon I would learn that was supposed to be descending on this road NOT going up it.
Where is JP taking us? Through a field/marsh/bear trap? All of the above. PS this was so fun on a fat bike. The fun would be over soon though.
Jumping between water filled ruts. Barely managed to keep my feet dry.
Bear scat. Time for me to get out of there.
Notice my bike is facing the opposite direction as the sign. I made a wrong turn and ended up riding the north loop backwards. The hike a bike to get to the top took so much energy. Luckily I had a burrito in my pocket.
So technically I can say I rode my bike in Montana too. Even if it was just a couple of miles.
I believe we are looking at West Yellowstone.
Another view from Two Top. The highest point in the ride. So remote that we took these rough ATV trails to get up there. Going down was exhilarating and tiring. The first time I have wanted suspension on a bike. I don't know how people did it on skinny cross tires
I want to go back to these trails with a full suspension fat bike. It would be so much fun.
As I mentioned earlier I ended up taking a wrong turn. Totally my fault. I made it to the 75 mile check point were the gracious crew loaded me and gave me the directions to cut the course short so it was only a 20 mile ride back instead of 50+. I thought I would try to complete the whole route (backwards) but then time was getting away and I came across another rider who was having some issues and could use some help getting back to the finish.
Technically I DNF'd. But I didn't really care. I just wanted to ride my bike all day in a gorgeous new place with new challenges and that's exactly what I got. 103 miles of adventure were had.
The trusty steeds loaded up and ready to head home.
4 Salsa's and a Surly. I don't believe anyone had a bike issue during their ride. It's nice to have good equipment you can rely on.
On our way home we couldn't pass up driving through Yellowstone and the Grand Tetons.
First stop. The Grand Prismatic Springs.
Brett had just been through Yellowstone with his wife earlier in the year and proceeded to tell us all about the stupid people who die in Yellowstone's hot springs.
Meet the Stillwater boyz.
Dr. Seth Wood. He finished the 120 mile race in 6th place on a single speed Krampus. #onegear
Bobby Wintle. The stoke master. #turnandburn
Brett Stevens. The most reliable man in the world. #eeyorebuthappy
Trevor Stewart. Rocked 60 miles on his Fargo and got himself a sweet finishers glass. #IlikegirlsnamedLiz
Being here with these guys was incredible.
I think Bobby slept so much because his body was trying to store up sleep before Land Run 100, 2017.
What a great trip. I'm hoping JP's Gravel Pursuit can be an annual trip. So worth it. Next time I'm going to have to figure out how to take the family with me.
On May 7th, Ainsley turned 7 and I got to ride in the beautiful Flint Hills surrounding Eskridge, Kansas. The even is called Gravel Ride for Maisie's Pride. I was honored to be able to help the event organizer Ryan Dudley put together a website for the event. You can see it at maisiespride.com. Read about Crazy Maisie. It's a great story of an unwavering faith and mission to get her very small community a swimming pool.
7 years old. You will have an amazing year my little girl.
While Ainsley was busy celebrating her 7th birthday, I was attempting one of the hardest 100 mile gravel courses out there. The first 25 miles were great. I was keeping up a good pace but then some fatigue from a lack of training struck and my legs decided to succumb to cramp monsters. I barely made it to the half way check point which is also the start/finish of the race. The old RV was looking so inviting but I mustered up some crazy nerve to continue. I made it 64 miles before taking a ride with the local support crew. I was dead last and the cramps were not going away. Normally I can expect them to go away but the endless steep climbs kept them coming back.
The best way to start a ride. Downhill.
Thank you Keith Reed for the photo
The pain was just getting serious here. Keith caught me just as I was falling apart.
I recorded the beginning of the ride on my GoPro. I got lucky that the memory card filled up before my legs fell apart. In these series of videos you will see the first 25 miles of the course. You'll see the rutted and rocked roads, crashes, and friends passing me.
Also remember my last post about Land Run 100 and how I told you all about Jacob Roy and his attempt at Land Run that was cut too short because of the mud and a mechanical failure? Well, he absolutely destroyed it at Maisie's Pride. 1 of only 2 people from Stillwater to finish that day. The other being local bad ass John Brun. Both of those guys crushed it and I couldn't be prouder.
Finisher! Jacob Roy
Bobby Wintle
Professional photos have been released of this year's Land Run 100 and for the first time a majority of them are available for free. Kudos to Bobby and the team for paying for them. Where else does this happen? Thank you to James Gann, 241 Photography, and Kim Morris Photography for the amazing photos and time and effort you spent making them. I know you enjoy the mud too ;)
The Red Dirt Divas were starting the party before the race even begun.
You should look through all of the photos that the photographer's took. I want you to notice downtown Stillwater at the starting line and the finish line. While we are out riding our bicycles (or running) and having fun, the crew at District Bicycles and the Land Run staff of volunteers transform 7th street from a place of business to a block party. The effort is tremendous and is felt when you cross that finish line.
The Crew that makes the magic happen.
To be fair the finish line party is inspired by Land Run's "big brother" up north, the Dirty Kanza. Another gravel event that when you finish you fee like a rock star. Land Run and DK are each different and special. While Dirty Kanza literally seems to have the entire community of Emporia's support and involvement, Land Run has the Wintles. Bobby on the course and at the finish line giving his best emotions (watch him, it's more than just a hug, it's 100% celebration for you) to each finisher. Crystal may stay out of the lime light but I hear she's the one that get's shit done. They are people you could mimic but couldn't reproduce.
The finish line at Land Run is more than just a signal to the end of your race. It's a barrier you cross that encourages you to find the next barrier you can overcome. Maybe that finish line gives you the courage and desire to sign up for the Dirty Kanza 200. Maybe it gives you hope that you can better yourself and take on the challenges life throws at you. For some it's about winning but for most of us it's about finishing. At Land Run everyone is treated like the winner, not A winner, THE winner. Big difference.
What about those that did their best but were not able to cross the finish line?
Jacob Roy
I want to tell you about Jacob. I'll try not to bungle his story but he's new to the Stillwater Gravel Grinders. He literally started riding a year ago. Ever year new people come into our group and the Red Dirt Divas. Some are already cyclists but most are brand new to cycling. Whatever leads them to step foot in District Bicycles they walk out encouraged to exceed their goals with a bicycle. They then show up on a fun ride like Jacob. Bobby let him borrow a Krampus to hit 20 miles of gravel. Like Jacob, these people are usually wearing tennis shoes, shorts, t-shirt, and have no idea what lays before them.
Jacob - March 16th, 2015
Jacob was crushing his training rides leading up to Land Run. Very strong and determined. I got to talk with Bobby a few days before the race as we were putting together my new wheel set about who we are looking forward to see cross that finish line. We were both stoked when we both thought of seeing Jacob cross that finish line. Every year there are new local riders that attempt Land Run and they are the ones that I believe we celebrate the most. Even if they are DFL like our friend Kevin Ehlers this year.
I rode up on Jacob some where around the 25-30 mile mark, his bike upside down and derailleur no longer attached. I did not want to see that. Same goes with Brian Bickell who suffered the same fate. Both of these guys were riding strong and prepared to finish the Land Run 107 mile course.
Delayed is not denied
Going through the photos I came across this one of Jacob at the finish. This photo is what prompted me to write this. Some might look at this image of Jacob with arms crossed and see disappointment in his eyes. I don't know what you were feeling at that moment Jacob but I wanted to celebrate your progress and that you toed the line. Most don't toe the line on a challenge like this. You are on amazing journey and I can't wait to toe the line again with you next year. You got this.
Land Run is more than a race and a finish line. It's about new beginings.
Another epic Land Run 100 is in the books. When a big race like this ends everyone has their stories and tales to tell. Big Dave and I were hanging out and discussing the race and Andrea was like hey you should start recording.
Well the primaries are done and its time to update the blog since I keep seeing people and they think we are heading back out on the road.
Here's the deal. We would really love to be on the road traveling and working and living it up, but it's really not feasible. If we had lots of money we would do it. But we don't right now, so we are going to use the RV for short trips and maybe loan it out to friends and family.
Chris is going to continue working from home and I have been applying for full time work, while still sharing Young Living essential oils. We are still homeschooling the kids and making sure they get socialized and educated.
Ainsley's seventh birthday is coming up. She wants a cat. Since we are all allergic to cats we've decided on trying to find a Siberian Cat, they have very good results for allergy ridden people. George wants one too, but there's no way to afford two of these. Grammy and Bobo are going to help us get Ainsley's and maybe once I get a job or sell a ton of Essential Oils we can get George one too! The kids have been sleeping in their own room to ensure that they get a new pet and it's working well, now we really have to find one!
Anyways, that is where we are. Living it up in the city. We are grateful to my parents for letting us live in their extra house while we land on our feet again. We are also grateful to our village for standing behind us as we reconfigure life again.
Love,
Andrea
Our first adventure was full of memories and escapades. Memories of gallivanting around the South West States, keeping an RV running, making changes to help with power, and exploring. Now that we are back in Stillwater we are figuring out what to do next. Ainsley has upcoming check ups, Chris is working with local businesses and people doing I.T. work, and I am keeping house and kiddos happy.
One thing I really felt while we were out on our Walkabout was my rocky exterior cracking. I felt a sort of freedom beginning to take shape. When Ainsley first got sick I took to being a rock, building layer upon layer of hard exterior to deal with everything that was going on as well as being strong. Letting go of that exterior is taking time but it is happening. I am back in my sewing room letting my creative spirit flow and it is so nice. I plan on starting my interviews for my book/website next week and that will also lend to healing even more.
I have no idea what we will do next. So if you ask me/us we will probably say we aren't sure.
Right now we are just surviving, healing, being and loving on our family and friends.
Best regards to all,
Andrea
Hear about our 3 week RV adventure in the Southwest.
We are at Quartzsite the RV Mecca for snowbirds & today we opened the big tent RV show to try and find some seasonal work. We've met some amazing people and we are so grateful for everything we are learning. So far-the work our rig needs for fixing up the shocks, front end suspension etc, , is going to be about $8K hoping we can save this for next January.
Our plan today-is to head back to Oklahoma next week after seeing Grand Canyon, work some temporary jobs, help/ride LandRun100, & then head out for a seasonal park job, then head back for Football Season in Oklahoma.
We've applied for some seasonal work and look forward to what comes next.
Kitten coat anyone?
Cinnamon roll, free flashlight, and fun
Rock climbing everywhere
Crazy Peters
Checking out RV's
We are on day three and I've been posting to Instagram with shares to Facebook and Twitter but here are a few more pics and explanations! We are really enjoying most of this adventure so far! The best part is just pulling over and looking at a sight, or trying a local coffee!
Day one leaving Stillwater, OK
Coffee beans from Michael Thomas roasters
Beds set up!
It's weird taking those steps towards a new goal. It's even weirder when it's time to jump. I remember as a teenager jumping off a popular cliff at Tablerock Lake it was amazing until I hyperextended my knee, but I learned that I fulfilled conquering a fear. It hurt but I survived. And that's where we are now.
Housesitter is there. We are on the road. We've had two full days now and are on day three of travel.
I'm really glad I took the time to plan the cabinets and items we brought. The nights have been really cold and it's been hard to sleep. We have a space heater and have been using the generator and engine around 2-4am when the cab feels like 30degrees. We have many blankets and that also helps but I'm looking forward to learning how to help our rig become more effective!
More to come...
Today Ainsley Jane got to ring the "End of Treatment" Bell. Her chemotherapy is finished, her port is out, and she got to have a little celebration ringing the bell signifying "no more chemo". We are grateful for everyone that has supported us through this journey and we will continue with more info on our life journey. Today we remember those friends that didn't get to ring the bell, the friends that relapsed, and the friends that are still waiting for their time to ring the bell. WE Share this moment because it is MONUMENTAL and we wouldn't be here without all of our ALLIES support, prayers, and love. -Andrea
Here are the words to the little song I sang to her. (to the tune of --- Hallelujah)
There was a girl named Ainsley Jane
With sparkling brown eyes and a flowing orange mane
If she saw you, you were no longer a stranger.
But then one week she got so sick
Not even Elderberry did the trick
They told us she had two and a half years of fighting CANCER.
Hallelujah, Hallelujah, Hallelujah, Hallelujah
She woke back up and looked around
Her family in prayer and on the ground
She learned to walk again, and talk back to ya.
She braved the biggest battle yet,
Her anger, joy and fear all set
She looks at life and knows that it's a JOURNEY
You're my daughter, You make life full, You're our HERO, You're our Little Miracle
Big week. Ainsley took her last oral chemo meds and had her access port removed.
The 2-year battle is over. We are looking forward to life without hospitals and needles, nasty drugs and bad moods (not just Ainsley's when she is on steroids but Andrea and mine too.)
We are very thankful for the nurses, doctors, specialists, friends, and family who have helped Ainsley win this battle.
Just waking up from surgery
Ainsley and Andrea heading back to the operating room
It's an early drive to OKC but she's putting on a smile
Waiting. Lots of waiting in hospitals. Looking forward to less waiting and more living
Andrea and I spent our 7 year anniversary weekend working on the interior of the Trek. We have painted over the 90's wallpaper. Put smart tiles in the bathroom and will put some in the kitchen next. Painted all of the cheap gold looking door handles with Rust-oleum hammered spray paint and started tearing out the carpet to prep for a laminate floating floor. Andrea has also been recovering the valances. It's been fun making it ours. Also, thanks to our friend Big Dave for helping with some electrical work.
Enjoy the time lapse video we made of our progress.
We found her.
We will have a lot more to share including some interior photos before we do some remodeling. Check out the custom hand air brushed mural. One of a kind! I heard that was a $1500 option back in '98. We've been learning a lot about our Trek from the useful folks at http://trektraxs.com. It's been cool to find an active group of people who love these unique RVs.
By the way the kids LOVE IT. Wait till we show you the "Electro Majic Bed."
We've been in planning and project mode since we've decided to really change up our lifestyle. I've been going back and forth between freak out mode and laid back mode. We've been doing YardSale Saturdays and have had several donations to help us with our change. There are no words to describe how lucky and grateful we feel. We know that we are blessed and supported. And that feels LOVELY.
My new project is one that I mentioned before to many people and if you'd like to see the beginnings it is somewhat ready. Go to InterviewWithCancer.com and see what you think!
Our goals this week include another Yard Sale Saturday. Planning the #iRide4Ainsley gravel ride in September and getting ready for Fall Semester!
-Andrea
We are coming upon the two year anniversary of Ainsley's diagnosis. The stats always scare me and with numbers being low for awhile I was secretly stressing that something had returned, but numbers went back up. And we breathe again! Decluttering and slowly planning RV details has been fabulous. We all are working together as a family unit and it's really nice. My project and website is almost ready to launch and Ainsley is excited for starting school August 19th. George is busy with Legos 75% of the day and we are just trying to be somewhat normal! We send our gratitude to all our supporters. -Andrea
We are coming up on our 3rd Saturday in row of yard sales. This Saturday we are focusing on clothes.
Tonight we started going through the closets. I feel like I don't have a huge wardrobe. Ask anyone who knows me, I'm not much more creative in my "outfits" than Mister Rogers.
Some historic Apple tee-shirts will be up for grabs.
Empty Hangers. These once held shirts I hardly ever wore.
This week we have been checking out some RV's for sale by local owners on craigslist. There are a lot out there. We've found a Class A or C motor home would fit our needs the best. We did a lot of research on the pros and cons and it seems like the best deals are on older models.
So the first one we got a chance to see was way old. A 1981 Holiday Rambler 34' Class A. Listed for only $7250.
We didn't have high hopes and considered it would be a little bit of a fixer upper. The interior and layout was great. But it would need a lot little things fixed. Nothing too bad. But then we took it on a test drive. The owner who just got it a year ago said the brakes were not very strong. So we pulled out on the road going down hill. It was like driving with no power brakes. Then we took a wrong turn down a dead end and needed to do a 3 point turn. I thought this is great practice. I've never driven anything this big before although Andrea told the lady I had. Upon putting the vehicle in reverse it took a lot of power to back up. I eventually got it backed out and then proceeded go forward when something did not feel or sound right. Turned out the passenger side front wheel's brake was not releasing. I thought we were stuck. Lucky all it took was turning the engine off and back on and the brake released. Something was seriously wrong. I think the lady understood that we were going to have to pass. That was probably the scariest vehicle I've ever driven.
Next we went for the other end of the scale. A 2000 Georgie Boy Cruise Master Class A listed for $24750. Wow! It was in very nice condition and well taken care of. New tires, batteries, and other little things. If it was a sticks and bricks home it would be considered "move-in ready". Ainsley especially liked the big HDTV they installed. George of course would love the name.
We want to look at a Class C next. Just to get a feel for the space and layout. Whatever we end up with know we've got a lot of work to get there.
Some answersWe have been doing our research on the nomadic lifestyle. Yes, I said LIFESTYLE. We are not looking at this as an extended vacation. A vacation isn't what we want or need. I would bet most people do not change their lifestyle more than once in their lives. I think it is hard for most to understand the need we have and the need to do this our way. To quote some friends referring to our idea;
Such a contrast to being stuck at home and in the hospitals...
Freedom vs tethering.
Even the people closest to you guys didn't KNOW-know how it felt [Cancer].
Jump and the net will appear. You have this handled.
Living through cancer and near death of a child. Check. RVing across the U.S. Easy.
"There is more to the life God gave us than money, school, church, yards, cars, and even bicycles!"
-Chris
Read this: http://www.devoesontheroll.blogspot.com/2015/05/top-10-reasons-we-couldnt-wait-to-rv.html We related to almost everything the Devoes Family said in this post. But if you don't read the entire post, here is the last paragraph.
"Ok, so the truth is, we have one chance to do life. My husband and I honestly feel that God was pulling on our hearts to live bigger lives. We were letting our lives pass us by, instead of embracing our opportunities. We could have chosen to stick with our busy life in the suburbs. We could have let fear keep us there, but we knew we were cut out for something different, something more. As we researched this lifestyle, there was no doubt that we wanted on board. It became clear pretty quickly that we were ready to jump into adventure and leave it all behind with no looking back. It was time to enjoy the uniqueness of each day and new place. There was an undeniable pressing on our hearts that this was going to be the next step in life. It was time to risk it all in order to trade it in for this incredible epic adventure of a lifetime! It came down to one simple question, “If we do this and we follow this urge, what’s the worst that can happen?” And with that simple thought, the rest is history."-Devoes Family
AinsleyAs far as Ainsley's health goes we are not going to be putting her at risk. She almost died once, we do not ever want that to happen again. We won't be putting ourselves in a situation where if an emergency comes up we won't have our bases covered. Different hospitals, doctors or ER rooms: Andrea's brain and phone notes have more information then any of the computers and doctors have written down. She remembers that Ainsley is allergic to cephalosporins and penicillin. She informs them before they do any medication. She looks at the IV and the syringe to confirm medication. She knows that the port needle is 3/4, and believe me she tells them there will be no tape if possible. Last hospital visit was horrendous as they didn't have any info in the charts or computer for allergic reactions and Andrea referred to pictures of the rashes and dates, times, and doses given two years prior. So thankfully our bases are covered there. It's in shared notes and in Andrea's head.
For the concerns of riding our bikes to the nearest town, this is because we can and want to. If an emergency came up and we are at a State Park miles from a highway or town then guess what?! WE CALL 911! If we are in a area with no cell phone reception and no near by people. Guess what? We won't go there and put our family in a bad corner. Honestly, this concern has nothing to do with Ainsley's leukemia. And to be honest, putting her in school would subject her to more sickness and germs than anywhere else besides a hospital. Part of the chemo treatment (which is daily Mercaptopurine and weekly Methotrexate) is constantly poisoning the blood to keep the cancer cells from coming back. When chemo is done then the poison is done. Guess who will be feeling much better without a compromised immune system? Seriously read about Methotrexate:
Methotrexate may cause very serious, life-threatening side effects. You should only take methotrexate to treat cancer or certain other conditions that are very severe and that cannot be treated with other medications.
Road SchoolingFor those concerned about the kid's education. We have found plenty of resources for "Road Schooling." It's home schooling on the road. You can debate with us on the pros and cons. But out of the home schooled people we have met, they have been brilliant, talented, well rounded and have had a perspective on life and society that I want my kids to have, one other beautiful thing is that they have so much acceptance. (Evan F, Arlen F, Tyler S, Melissa V, Fiona B, Edward C. and many more) And socialization is not a problem. (just give George ten minutes of warming up)
Some of the resources we will be using. http://familiesontheroad.com/roadschooling.html, The Montessori Method, https://wandrlymagazine.com/article/roadschooling-101/, http://charlottesiems.com/category/homeschooling
The living in a RV partIf you are concerned with the details in making this life style work then I have some suggested reading. http://www.technomadia.com/excuses/
Technomadia has been the best resource we have found. Really geeky and nerdy in-depth knowledge. This is not an unrealistic fantasy. Watch the video below. It's long. But we have watched and we know the realities.
As far as affording an RV. We will not be going in debt to do so. We are going to get what we can afford. Something like this for less than $10k. We will be selling the stuff we don't need and storing what we can't fit in the RV (memory boxes for kids and artwork). The rest goes towards the new lifestyle.
1990! Oh yeah!
Yes, there are many expenses that go along with an RV but it's no different than a house. Except this house can have a different front and back yard through out the year.
IncomeHow are going to have a income to make ends meet? We are working on different ideas. If you read the Technomadia post then you will see there are many options. But guess what they ALL entail. Andrea and I WORKING HARD. Maybe manual labor, maybe it's cleaning camp grounds. Maybe it's a job we can do via the internet. Or maybe all of the above. We won't be getting rich. We will probably be considered (income wise) "poor." But I guarantee you my family will become richer and closer. My kids will have a childhood they will remember. Their expectations of life will be much higher than mine.
For you Bible readers:
"Then Jesus said to his disciples, 'I tell you the truth, it is hard for a rich man to enter the kingdom of heaven. Again I tell you, it is easier for a camel to go through the eye of a needle than for a rich man to enter the kingdom of God.'"
-Matthew 19:23-24
"Then he will say to those on his left, 'Depart from me, you who are cursed, into the eternal fire prepared for the devil and his angels. For I was hungry and you gave me nothing to eat, I was thirsty and you gave me nothing to drink, I was a stranger and you did not invite me in, I needed clothes and you did not clothe me, I was sick and in prison and you did not look after me.' They also will answer, 'Lord, when did we see you hungry or thirsty or a stranger or needing clothes or sick or in prison, and did not help you?' He will reply, 'I tell you the truth, whatever you did not do for one of the least among you, you did not do for me.'"
-Matthew 25:41-45
I will never feel bad for the generosity we have been shown. We will share that generosity and show it to others. This whole thing will take FAITH. I hope you will have faith along with us.
-Chris
Andrea's thoughts:
The comments of support and love have been amazing. And I know that there will always be concerns from those that love and treasure us, I would be the same way. I appreciate everyone and I know this won't be easy. Cancer lane hasn't been easy either. I would like to address a few things that were commented about and clear them up.
Yes, we have HAD to rely on others for money to pay the bills, money to buy time alone, money to buy food for the week, money to buy STUFF. We've been irresponsible at times. We've HAD to HAVE three fundraisers when times were awful and we have applied for help from various organizations to pay house bills and the other fundraisers were done out of people's kind hearts, they contacted US and said "can we do a fundraiser to help you?". I NEVER SAID NO to help! I said, "thank you and yes please".
I struggle daily to stay positive and proactive in this cloud of gloom. So when someone says here is $500 to help you, I use that $500 to pay our family's electric bill for the month or I use $434 to pay the bill and the rest buys Shopkins and Barbies and Superheroes and other bribes so that my daughter will not bite me during a blood work draw or heparin addition to her port. I use it to buy a movie on iTunes or an app on her iPad so that George and Ainsley can relax and be somewhat like normal kids. I used it to pay for George and Ainsley to go to school last year. I use it to buy babysitting time because I seriously go crazy if I don't get to clean my own house or run errands occasionally without children clinging to my legs. I use money to buy snow crab legs and steaks for her during steroids. You know what Chris and I order> usually something to share that is cheap so that Ainsley can have more crab legs. Chris and I have gone on maybe three dates in the past two years, so we aren't wasting it on us. Our fun toys were paid with tax refunds, and mostly we bought used items (sewing/bikes/clothing).
YES, my parents have financially supported us tremendously in many ways throughout this and I feel like a burden. A ginormous 36 year old BURDEN who has to ask for money to afford food and electricity and the amazing overpriced coffee drink. I HATE IT. BUT I still accept their generosity.
I clean their house weekly and they pay me. I use that money for groceries or for my gym fees. I go to the gym so I can be strong physically. I literally have to carry Ainsley around still when her legs are hurting and she weighs 38lbs and is solid. I also love to look good! Looking good makes me feel better about myself and confident. They also paid for me to save my own life and paid for most of my gastric sleeve surgery so I would stop eating everything in sight to deal with my emotional trauma. So, yes, I am that ADULT child getting HELP from her parents and it feels awful. I try and cook for them and say thank you all the time, but it will never feel like enough.
One more thing, if none of this happened and our path was building a Montessori School and me finishing my masters degree then our income would be different. But that path was closed. Chris' income is what we have. The generosity of others has kept us going. The safety net of my parents has saved our asses when I have to pay my own mole removal bills(still paying on) and buy more oatmeal, kale chips, arby's french fries, chili supplies, or lemons. I am sad that I have to ask for help. It makes me sick to not be able to pay off everything all the time. It makes me cringe to not have savings built up. But there are times when I can't work (cleaning houses). There are times when we are stuck inside for days. There are times when I have to think of ways to get through all of this. Many times I've said "lets do a fundraiser to pay off all this stuff" Chris reminds me that we must sacrifice. We must make it work. We must pay off what we can and keep going.
So yes, There it is. We have relied on other people, I hope they never feel taken advantage of because we needed them. I call them my village. My sanity village. We learned living in the hospital that all you need is your family, your village, soap, water, glasses or contacts, food, a good pillow and sleeping space, money to eat/live, and tons of FAITH.
If we had $1,000,000 in our savings then maybe everyone would feel better. But we don't. We don't have any savings left. We spent it all on stuff and bills and toys and pets (that died and were stolen) and life. We have an IRA that we can't touch until we are 55. If we do it will be taxed greatly. We have some in our checking and that is it. We plan on selling what we can to make this happen. And then working our asses off to make the rest of it happen. We plan on having insurance for our children that covers everything. We plan on insurance for the RV and the Stuff. We plan on insurance for ourselves, because chopping off a finger in the woods while doing naked yoga and eating granola could get expensive!
We plan on slowly building our savings up and the kids college fund, but we will have to work to do that. And we will. Maybe my book will make a million, maybe not, no matter what I am writing it.
We almost lost our child. And that is why we are the way we are now. We are trying to LIVE each day thoughtfully, sometimes it doesn't happen, but other days it does. addition watching the kids that we have met die (old friends and new) and get more tumors and have to undergo different therapies also contributes to the way we are now.
YES, we will need breaks from each other and the kids and that is why we have friends and acquaintances to visit in almost every state! There was a miracle that happened when Ainsley was living second to second and we will never forget that. We are lucky. We are blessed.
We are the most grateful.
And we try to give back. If someone came up to me and said "hey that shirt is awesome can I have it?" you know what I would give it to them.
So there it is. The rainbow of this difficult decision. The money part. The faith part. The insurance safety part. What happens if Chris or I can't work? Then we head to a place to settle down and work from there. We will provide somehow, someway but we have to LIVE. When Ainsley's treatment is said and done we hope that Chris can still work for OSU remotely, if not then we will make other things happen. We will be back in Oklahoma every three months to do checkups and such for Ains and George.
If this lifestyle is awful for us, guess what? WE WILL BE BACK!!!! If we need rescuing and you're not up for helping us, DO NOT HELP. It's that easy.
But overall, I will never stop accepting people's kindness because I know how good it feels to give. If I am struggling to feed my children, I WILL ASK FOR HELP. If we are stuck and need help, I WILL ASK FOR HELP. If I need someone to cry with, I WILL CALL MY SANITY VILLAGE. If God tells me I am needing help, I WILL ASK FOR HELP.
I know how wonderful it feels to bless others. I have been blessed, my family has been blessed and we try to bless others in whatever way we can. We always try to sow seeds and if you've met my children you've probably walked away with a gift of some sort they are giving souls.
I think Chris covered most of it, but I really wanted to cover the money part. I hope this helps. And if not> email me directly andreamacpeters at gmail.com
Love and hugs to all,
Andrea
So now that we've written about our future dreams we've received many comments and concerns that are so valid and we will address them all. And hopefully, we will help everyone understand. We love and appreciate you all.
-Andrea
CONCERNS:
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Ainsley's Health
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Jobs
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Income/Money/Savings
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Getting an RV
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Travel Expenses
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The Childrens Education and Socialization
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Emergencies
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Transportation
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Being together 100%
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ETC.
All of these will be filled in when Chris and I can type them all out with our resources listed so that everyone can see the homework we've been doing.
A brief timelineI remember when Andrea and I first got married in 2008 and had dreams for our future family. We were almost 30 and wanted to build a family in a non-traditional way. We didn't want to accept the status quo. We started various businesses in areas we had some passion about. Ideas would come and we would execute on them, then life would take a turn and we would try something else. Ainsley came along in 2009 and we tried to continue on the "different path". Adventures in cloth diapering, breast feeding (Andrea not me), natural home made foods. We cut Walmart out for an entire year to explore local options. We didn't have a lot but we were blessed with family close by to support us. I was trying to build websites for people and doing some contract Apple training at schools.
Then when we found out George was coming we realized we needed healthcare. Andrea wanted to have George at home and that doesn't make child birth cheaper. So, I returned to Apple in OKC knowing they had great health insurance options. George came in 2011 and Andrea wanted to start a Montessori school here in Stillwater. In 2012 Mrs. Peters Montessori was alive and kicking. I had found a great job here at OSU that would provide income and insurance. Things were going good. We were falling more into the traditional family. Not that it's bad but in a way I felt like we weren't dreaming anymore. The last dream was Andrea's Montessori school. Cancer crushed that dream.
Ainsley's battle against leukemia was obviously devastating. All energy focused on her and rightfully so. When something like cancer comes into your life you just have to deal with it and keep moving forward. Any ideals we had got set aside.
Re-Discovering UsHelping our child fight cancer gave us more focused goals. During that time Andrea and I drew closer together in some ways. But in other ways the added stress, especially on Andrea being at home with Ainsley and George, was wearing down our relationship. It's like for the last 2 years we've been "butter scraped over too much bread."
I'll be honest and say that we considered separating. We were not on the brink of divorce but we were really rethinking our family. I think ultimately we were tired of the hand life had dealt us and something needed to change.
Then Andrea and I had a moment. While on a long car trip home from seeing family with screaming kids in the back needing to stop every hour we began to dream. I brought up the thought of, "what if we just packed the family up in an RV and went away?" Andrea got a little excited. We started imagining the places we've never been and wanted to see. Things we wanted to do, but couldn't afford. Experiences we wanted our kids to have, but we couldn't because of jobs and cancer. That little bit of dreaming then got bigger. Google searches like; moving your family into an RV, living on the road, types of RV's, etc started. We found some great resources and inspirations, like Devoes on the Road, Technomadia, Gone with the Wynns.
I feel like we need to get back to the basics and strip away all the cruft and stuff we have accumulated over the years. Physically and emotionally. Maybe selling and giving away all of our stuff is the way to do this?
Education through experienceWhen Ainsley was an infant we told each other we wanted to homeschool our kids. Not that Stillwater public schools were bad, but we both felt like we wanted to be more involved in our kids education. When Andrea had discovered the Montessori method we got excited to make it a part of how we wanted our kids to learn.
I wasn't a very good student in school. I was your average C student in Math, English, Sciences, etc. But the areas I excelled or enjoyed were; band, vocational technical school, sports. Those were all very experiential learning. I wasn't interested in reading textbooks and listening to lectures. But put something in my hands and allow me to create and I was in.
Field trips were also a great way to learn and have an experience. So that is why "road schooling" the kids sounds appealing. Instead of just learning from a book we can actually use our travels to learn about the world. I mean what better way to learn to read than watching road signs fly by? This will be a huge challenge. I think we can do it.
Keep it simple and sustainableWe have been extremely blessed to live in our house rent free. But this house has been way too big for us. In the beginning we literally only used half of the house and tried to close half off to save on heating and cooling. It was nice when Andrea had her Montessori school on one half. But since all of that has been shut down we have just accumulated more stuff to fill this large house.
I have always dreamed of simple living. Like the tiny house trend, everything you own must have one or more purposes. Do we really need 20 forks and spoons for 4 people? Do we need 10 towels for each of us? How do we have 4-6 loads of laundry going at all times? Now we are not hoarders but our stuff is beginning to affect our mental health.
Remember how we used to use reusable paper cloth instead of paper towels and we never bought paper plates? We want to get back to that. Imagine living with restraints. We can't have a million towels because we don't have any room? Or having only 1 fork, spoon, knife, and cup per person? Not being able to let the laundry go for a couples days because you will run out of clean clothes to wear. Simplifying everything down to necessity.
We also want to be sustainable and leave no trace of environmental impact during our travels. We may not be able to start out super green. But we really want to think through everything we are doing and how it impacts the environment and other's around us. Waste equals wasted $$$.
One big way we are going to do this is to exclusively travel by bicycle. This will require research and planning our locations but once we park we will not have another vehicle to run to town for supplies. If the town is 10-15 miles aways (maybe more) then we have to ride our bikes to get there. Considering we don't know what kind of road conditions we will run into I decided FAT bikes will be our go anywhere and do anything methods of travel. We can pull the kids in our trailer or use it to haul supplies. Not only will it sustainable and good for our fitness we can also explore the world by bike. Which since getting into cycling I have always wanted to do. We just need to get our other bikes sold so we can get Andrea's gently used FAT bike.
What? You're crazy!Maybe we are. It's a risk but I only feel like we would be risking this opportunity to find out what's next for the Peter's family. Maybe this lasts 6 months, maybe it lasts 6 years, we don't know, but we at least want to try.
Andrea's ThoughtsAfter reading Chris' post I felt chills.
Good goosebumps.
I watched Bilbo and cried.
Why? Because I have been stretched so thin and have put on a happy face for so long that I am extremely tired. Yesterday, after being at a family event George asked me if Ainsley was done with chemo. I had to tell my sweet baby boy (age three) that she will be done soon but we didn't have to go to the doctors or take chemo meds today.
WE.
Cancer has affected our family as a WE. My poor baby Ainsley has had to; be poisoned, poked, relearn everything, overcome everything, and she is still functioning as a pretty amazing six year old. Throughout this whole event Chris always tells me we have to sacrifice. We have to just get through it. But I am like Bilbo Baggins in a way, the ring (CANCER) has worn me out. It's frazzled my spirit and taken it's toll on me. And then I feel guilty for thinking of the ways it's affected ME. I mean what about Ainsley and George and Chris and my parents and his family and on and on...
When your daughter asks "why her ears are wet" and you have to tell her "she was crying during her spinal tap and tears got in her ears." Then she asks "did they give me Versed to not remember?"
" Yes, baby girl they did, I am so sorry this happened." SAD Stories. Sad depressing things that we talk about to heal. We talk about to help others. We talk about and need to write down for her and for us. For WE.
Gaining freedom from the Hospital the first time Aug. 2013
When we talked about this ginormous idea I wanted to really connect the dots. Getting an RV, Leaving my parents/family, Money, Jobs (working from the road?), Insurance, Homeschool, Health concerns, and of course Emergencies. Then I thought about WHY. Why would I do this? Here is what I came up with "if" all the dots just kind of fell into place.
WHY: I need to reconnect with my family of four away from the distractions of everyday stress. I would like to be free from materialistic addictions and gain more insight into our world and my children. I would like to be able to educate my children without the distractions of cancer events. I want to reconnect and appreciate my husband again. I want to show my children a loving marriage. I want to find more joy. I want to learn about nature. I want to interview people around the states (and eventually the world) about cancer. I would write a book and also make videos online to help educate and promote awareness. I would like to JUMP head first into a HUGE risky adventure. I may sink, but I have a family and community of life savers that would always dive in and help us crawl out. I want to breathe and smile again for real. (and maybe my parents can join us part time!)
Andrea and Ainsley
To Andrea from Chris:
This weekend Ainsley stayed home with her grandparents while George and I supported Chris and his pals in a Gravel Cycling Race. When we got home Sunday we had a fun Easter Egg hunt and unpacked a little. Sunday night Ainsley complained of her left jaw hurting. I noticed her lymph node was a little swollen and thought it was the allergies or cough she has been fighting for over a week. Monday, today, the left side was considerably more swollen so I called our local doctor and made an appointment for 3pm. By 10am I was getting scared. Benadryl and a zyrtec had not helped and her left jaw was getting more and more swollen. I kept telling myself that it had to be a bacterial infection or virus that she was fighting but then I called Grammy and told her to come get George and we would head to OKC Childrens just to be safe. I called them on the way and they squeezed us in for lab work and an appointment.
Thankfully, lab results showed that her blood counts were good. They were a little high but that could be due to her fighting something. And I spelled out the word to the PA "Do you think this could be a lymphoma or another C-A-N-C-E-R showing up? " she said she would check with the head of the department but was pretty sure it was just an infection. When she came back in she said he agreed with her. An infection is the likely cause and she will try antibiotics to see if we can get rid of it.
To be honest I hate this. I do not like feeling fear. I do not like feeling weak and helpless. I stayed strong in front of Ainsley and let her know that no matter what we will just get through whatever is going on. She accepted that like a champion and a hero. I prayed for strength and God delivered again. I prayed for healing and she is already bouncing back to her normal self. She even tried walking on the balance beam outside tonight after blowing bubbles and roasting marshmallows.
So for now we are here. Just walking our path and doing what we need to do. We will continue to do this and rock at it.
-Andrea
I just wrote a great post and it got deleted. It was long with lots of details and it is gone. So shorter piece until I can redo.
Here is the undeniable truth>Ainsley can still get very sick, very fast
We thought we were in the home stretch, and we are, BUT we are stuck in the hospital fighting some sort of something. She is fighting like a tough broad can, because she is a warrior.
I've been watching the sun rise, the workers walk to construction sites, nurses switching info, and my baby fight another infection of some sort. Her body is reacting to the anti-biotic and I am diffusing some essential oils to help with her breathing.
I am here. In the moment. I am trying to stay as strong as I can. I am her rock and will continue to be her advocate.
Right now> cefepime causing rash> atarax helped last night with itching> benedryl preemptively before this round of cefepime not keeping reactions away> darkening of rash, rash spreading on chest area
worst part is Wednesday while she was sleeping she was having night terrors, thankfully Thurs night went better.
Also, she told me her port was itching I thought it was the tape, now as I look at it she has a freaking rash all under the tagederm tape too. My poor sweet baby girl.
We are missing her Pi Day Pie Fundraiser held at District Bicycles tonight the Ehlers family is making pies And District Bicycles is letting them sell during their LandRun100 race info session. We hope they know how much we appreciate it! Crystal and Bobby Wintle the owners of District Bicycles are the greatest and the Ehlers- Vicki and Kevin are so kind. We will be cheering on the racers of LandRun 100 from the side and Facebook. for now that is all... I will keep updating on Facebook, but I wanted to update our website just in case you are not on FB!
With love and gratitude,
Andrea
There was a time when we had Kamps coffee daily...Where we prayed for Ainsley to talk...now we are here again for more then just an appointment. Ainsley needs blood. She is getting a transfusion as I sit here ordering her and Chris a sandwich and me some coffee, Chris is sitting with her and she is receiving a bag of blood.
Her hemoglobin was so low that we had to come do a transfusion although she had a wonderful week with cousins we wouldn't have even known other then doing her bloodwork yesterday.
So that's where we are right now. Two and a half hours left to go of transfusion time. I pray we are home by nine pm tonight.
-Andrea
Here are pics from our quick trip to the Big Apple. We were on The Meredith Vieira Show and had a blast!
We were recently on The Meredith Vieira Show with the two other girls from the picture that went viral. I'm so grateful they had us on the show! Here are more of my thoughts of gratefulness...
- Ainsley is alive. Ainsley is walking, talking, going to the bathroom, taking her medications, playing, running, jumping, dancing, and sometimes torturing her little brother.
One year ago...She was home, she weighed 23 lbs, she wasn't talking, she wasn't walking, she was wearing diapers, she had a feeding tube for food/liquids/medications, she wouldn't play, she wouldn't respond to many people, and she moaned a lot.
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Donations have lifted financial burdens off us. We have received so many donations and they have helped us live. They have paid bills, rebuilt the duct work, bought a special vacuum, bought bribes for medications, bought car repairs, paid for groceries, they have helped us literally get through this time. With the donation from the show we will be putting it towards all of her medical expenses, school expenses, donations for other foundations/people in need, and bills. We cannot describe the happiness and the weight this takes off our burdened shoulders.
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Community. I am so grateful to be part of Stillwater's community. Everyone here has blessed us, prayed for us, sent money, made food, helped in so many ways. We are eternally thankful for all the support and we will continue to give back whenever we can.
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God. I am not a very religious person but I thank God that he put us in the situation we are in. I know that sounds weird, but I truly feel that my path is right where it's supposed to be. I am supposed to do this and get Ainsley and George through it.
Every time I get stressed about money or bills another donation comes through or someone in the community offers to do a benefit for Ainsley. EVERY TIME.
God not only takes care of us financially but emotionally too. When Ainsley speaks of death we always pray for more strength to carry us through and God delivers. Even though we aren't church goers we are believers and we know that God put us here for a reason. We know that Christ died for our sins and that is love. We know that we are here to support Ainsley, to bring awareness about Childhood Cancers, to help others, and to be beacons of hope for those that have lost their hope. I pray to continue to be strong and with God's help I know that we all can be.
- Awareness. Ainsley is becoming a poster child for childhood cancer and survival. I hope to write a book one day with her help. I thank Lora Scantling and Christy Goodger for taking the viral photo that has made my baby a superstar, I thank the other moms and daughters for being in the photo too. Together we can all help raise awareness for Childhood Cancers.
Just know that I am grateful. I am honored. I am humbled. And I am not perfect. I stay strong because that is my job, but I have days where I hide away or where I am sad but they come and go. For now I celebrate that we have one year plus left of treatment. I celebrate that my role is to empower my daughter. I celebrate all of you for reading this and helping me because without you, I would not be as strong as I am.
Bless each and everyone,
Andrea
One long year ago we posted the news that Ainsley Jane Maciula Peters did in fact have Acute Lymphoblastic Leukemia. We had been in the hospital for two days and the blood tests confirmed that she was battling cancer. We sat outside in the hospital play area and cried. We prayed that God would let her live. We prayed that we could find strength to get through this. We prayed that finances wouldn't be an issue. We prayed that we could hold it together to get through the tough parts.
I remember going to the doctor the first time. When she first saw the bruises on Ainsley's legs I thought to myself, maybe she thinks I beat my child. I never even worried about the bruises because we played outside all the time and my kids are adventurous kids. We also believe in Gentle Parenting so we don't spank or hit our kids, we discuss options, remove them from the situation or go with them to a time out thinking time spot to calm down during disagreements. A week after our appointment as Ainsley's health was declining we ended up in the ER. They had to drill into her shin to give her fluids after trying three different veins in her arms and getting no results. She was awake and terrified.
They had to catheterize her while she was awake. Throughout this time I calmly told her what was going on, I introduced every one by using their name tag. "This is Nurse So-and-so she went to school for a very long time she is going to put a tube in your urethra to help you pee, it is going to feel very uncomfortable, it might hurt and I am right here, you are safe".
Inside I was freaking out. Not only did they not know she had leukemia yet but she was so sick because she had every virus known to man due to no working white blood cells.
They put her to sleep after we kissed her and told her how much we loved her. They loaded her on a gurney and we decided that Chris would ride with her, then they said they needed another nurse so we both should drive while they flew her to Oklahoma City.
When we arrived we went through every detail. Every medication given. Then Dr. Henry told us she thought she had leukemia.
We knew that we couldn't do Gerson Therapy in Mexico with leukemia. We had to go conventional. And so we did.
Things in the hospital were hell. If I ever have to go to hell, it will be in an intensive care unit watching someone I love on the brink of death.
I never gave in to any doubts. I knew that she could do this. But I was scared shitless. I watched her blood pressure get lower and lower. I watched her kidneys fail. I watched as they added drug after drug to fight off infections. Her little body was swelling to a point of her skin ripping. They installed a dialysis line in her neck. Two tubes coming out of her vein. One took the blood the other put it back in. The machines broke and stalled and then finally worked. We played this Reiki Healing CD the entire time, 24 hours a day for over a month. We slept in her room almost all the time, we tried to never leave her alone. Every four hours she had respiratory therapy. She would wince in pain so we would talk to her even in a coma.
I sang Feed the Birds, Baby Mine, Sleep my Baby and You are my Sunshine a thousand times. I would tell her all the time that she was safe, she is loved, she is perfect. I would tell her to fight. I would tell her to beat this. I would tell her how proud of her I am. I also would tell her how very sorry I was.
I wouldn't break down very often in front of people but occasionally I did. Mainly, I had to stay focused on the next task. Viruses being gone, dialysis done, kidneys working, blood pressure stabilized, chemotherapy started, breathing tube out, feeding tube out, trying to walk, trying to talk, wanting to go to the bathroom again, living.
There was a time in January where she discussed her hair falling out and how sick she was. She told me that I would be fine with one child and she could die. I told her that I needed her to fight, I told her that she was going to beat this cancer and that God needed her on earth to help other kids with cancer. I told her I would keep shaving my head and be bald along side her so that she never felt alone. She agreed that she could fight and stay strong as long as I did too. And so I did.
And now here we are. ONE YEAR LATER.
We still have a year and a half to go. But for now we don't have to deal with hell. Just little tidbits of tantrums and anxiety. And for that, I am grateful.
-Andrea
It's amazing how fast and slow time is when you are in the thick of things. It seems like only yesterday we were given the news of Ainsley's cancer and now we are coming up on a YEAR in August.
Ainsley and her picture of Ana, our dog wearing the cone from her recent spay surgery.
So much support and love and change has happened over the past 10 months. We have gained thousands of online supporters through Ainsley's 15 minutes of fame with her Three Fighters Portrait from Scantling and Goodger Photography, George is talking up a storm, Ainsley is getting her beautiful red hair back and so is mommy! It's wonderful to be where we are today and we couldn't have gotten here without the support of our family, friends, online followers, and our amazing community.
This fall I am planning on trying to work some from home and send the kiddo's to a mothers day out program for three days a week but I still worry about Ainsley's overall health. The last thing we want is for her to end up in the hospital due to a silly mistake. However, I have to remember to TRUST God and let go of the unknowns. The hardest part about trust for me is the letting go, putting it in God's hands and just being okay with whatever the outcome may be. But I am working on accepting it. We have had several fundraisers help us with everything from house repairs, replacing furniture, food costs, travel costs, van costs, getting a better vacuum, and paying the day to day bills. I still struggle with not having an extra "job" but taking care of Ainsley and George and myself is full time plus more (as any mom or dad will tell you). The fundraisers have carried us through this and we will probably have to continue them until I can go back to work or figure out how to magically make money while watching Wild Kratts and making kale chips, but that is what people continue to tell us to do. Ask for help when we need it.
Right now the most our bills are paid, food is in our bellies, we have supplies in the fridge, our air conditioning is on and we are enjoying every second that we are given. We are so grateful for all our Allies without them we would be okay but not able to breathe as easily.
So, I guess what I am trying to say is...Thank You All! We love and appreciate you and we will ask for help without feeling ashamed. You all humble us with your prayers, donations and generous love!
-Andrea
When we first ended up in OKC Children's hospital and Ainsley was in a coma I started filling out paperwork. Paperwork for leukemia studies, paperwork for help with finances, paperwork for counseling, and paperwork for Make a Wish. As I read the Make a wish paperwork I knew that we would have a long fight before we could even make a wish for Ainsley happen.
Then she started responding to treatment and finally getting better. When we got to go home she still was reverted back to a baby. Our Make a Wish volunteers (Nikki & Kate) asked about what Ainsley would like to do. We spoke to her and asked questions and she didn't respond. They met her when she still wasn't talking or walking and they were so kind to be patient with us and Ainsley as we tried to find the perfect Wish.
Finally, when she started becoming herself again she liked the idea of Princesses. So when we met with our volunteers they told her about DisneyWorld and Give Kids the World Village. She loved the idea of ice cream all day, parties, a grumpy tree in the village, seeing Mickey Mouse and Disney Princesses, and getting the Royal Treatment at Bibbity Bobbity Boutique. So she chose that wish!
Then we found out that Doyle Chiropractic & Family Wellness had sponsored her wish along with Make a Wish Oklahoma. We met with him and his office staff and set a date for end of April to go on the wish trip. I was so nervous that we would hit a bump in the roadmap of treatment or that she would get sick again but God proved that prayers work. We are here and enjoying every element of this experience.
Ainsley still has to take her steroids, antibiotics, and oral chemo but she doesn't have to think about cancer for most of the day. Little brother George also gets to feel special and is loving the sugar rushes, toys, and royal treatment.
Yesterday was our first full day here and it was amazing! Make a Wish and Give Kids the World are two organizations that make families feel the love.
I am grateful to be here now. Grateful that my daughter has come so far and blessed that we get this opportunity to feel so much love. We are soaking it all in! Thank you to all our Allies and the organizations and volunteers! Oh, and one more thing we now have to refer to Ainsley as Princess Ainsley...this royal treatment may have gone to her head a little but that is fine with me!
-Andrea
There are no words to describe how I am feeling after yesterday. A little lost and grateful we are where we are.
I watched and held my first-born darling red head screaming over the finger prick to get her blood counts. I had to hold her legs with my leg and her writhing body with all my strength (my dad helped too). Then as we learned she made her counts and was looking good, we heard great news. She gets to begin the maintenance phase of treatment. After that I had to hold her down for port access and then talk her through the different medications. I watched as they lightly knocked her out. I watched as she was rolled into fetal position for her spinal tap, her eyes were crying silently. I spoke to her and sang the entire time to help soothe her. As she awoke she was loopy and feeling silly. Thankfully, she didn't consciously remember the spinal tap.
So what is this maintenance; This means that for the next 2-2.5 years she will continue with finger pricks, chemo taken orally, spinally (intrathecal), intravenously (in her port), steroids, antibiotics, and various other medications. After all that she will have scans and tests to see if cancer comes back. And then forever and ever she will always be at a higher risk for various cancers. What does that do to a person? Well, since she is four she doesn't have to worry about it right now. But you know what? She does. She frequently talks about hating chemo and how the medicines are disgusting and they make her feel weird. She's talked about death and God and how she feels like she is dying at times. SHE IS FOUR(well almost 5). The greatest thing to come from all these sad talks is we tell her to keep fighting, keep being brave, keep finding peace and to continue to trust. Because honestly the only way we hold it together is trust.
This week we are getting ready for her Make A Wish trip to Disney World and all I could do for the longest time is worry about if we will actually get to go. Now I am feeling like we are going to get to go and we are going to forget all about cancer for awhile, as much as we can. We are going to appreciate life and love and really get to dazzle Ainsley and George. I am grateful for everyone's prayers, help, time, food, donations and I am excited for this upcoming opportunity. We will keep you updated and again we couldn't and wouldn't be here without you all.
-Andrea
It's been way too long since I have sat down and written an update. Our big race feels like we've finally come to a point where we get to try being a little more normal for awhile. Ainsley has completed the beginning of her treatment and now will move into the Maintenance Phase of therapy for the next two years. I often refer to her leukemia as a marathon or endurance race because it is truly a long process.
Two years of maintenance seems like an eternity and a flash of light at the same time. If I think of Ainsley's birth and when she turned two it was amazing. There were long and short moments of extreme happiness, tiredness, but most of all change. Change is the only constant that we can always rely upon, right? So what now?
Baby Ainsley
Ainsley 28 mo
Being at home since September has taught us that we can never take for granted the small and lovely little moments. I sometimes cringe when I go to the grocery store and the person next to me sneezes or coughs. Will I be bringing that germ home? Will she get sick again? How are her numbers this week? Are her immunities up? Will George bring home something from visiting with friends? Will Chris bring home something from working around the college all day? My mind has been a constant ebb and flow of worry and letting go. I learn to let many worries go and just be positive and wash my hands!
Sept. 2013 in hospital
When people ask me how I stay so strong, I simply say that I have to. I have to be strong for my family and my daughter and son. They both are battling this extreme change in our lives. Strength is also gained by all the love and support that we receive. The notes of encouragement, the donations to help with living/travel/medical expenses, the hugs from strangers, the blood donations, and the overall community involvement with Ainsley's progress.
If I have learned one thing from this experience it is that people are good. I always am surprised when something good happens to us, but then I remember, people are good! Yes, there are rare people that make super bad decisions but in general, good people make the world lovely.
We are throwing Ainsley a belated Fifth Birthday/Moving into Maintenance Party here in Stillwater, OK. If you would like info please contact us. We would love to have you join us in this HUGE celebration and milestone.
Thank you all for everything but most of all thank you for helping us start the next leg of the race.
Best,
Andrea
March 2014 at OU Children's Hospital
I love this photo. Image Credit: 241Photography.com
March 9th 2013 was a life changing day for me. I participated in my first cycling event, the Land Run 100. I didn't really know what I was in for but I had Andrea as a great support crew. Some how I finished. It might of taken me 11 1/2 hours to ride 107 miles of muddy gravel but I did it.
Oh heavy helmet
214Photography.com did an amazing job
This is after I scraped the mud off the tires
11 1/2 hours
I think Bobby was more excited than me
You can't tell but I'm holding back tears.
I can blame most of this gravel insanity on him
Red mud made clipping in difficult
March 15th, 2014. Time for the second annual Land Run 100. This year was going to be a little bit of a different ride for me.
First, I had a year of putting miles of gravel in with the Stillwater Gravel Grinders. In August, I began working with Bobby and District Bicycles to build my dream gravel bike that I was planning to take to Gravel Worlds in Lincoln Nebraska. I would not make it to Worlds. 2 weeks after my first gravel ride on my dream bike, a Foundry Auger, I found out my daughter had cancer.
During our month long stay in the hospital many friends and family helped us and helped transform our house to make it a better living space to bring Ainsley home to. One of the groups that took charge was the Stillwater Gravel Grinders and Jim Bruer started the #Iride4Ainsley movement with the cycling community. Cyclists all over the country put handmade stickers on their bikes for Ainsley. It was an overwhelming show of support for Ainsley and our family.
Needless to say I had new motivation to cross the finish line again this year.
Philip Maciula
Timm Andrew Perry
My bike.
Friday night we had the rider's meeting at the new, bigger, better, District Bicycles. Bobby opened his heart about gravel and graciously invited Seth Wood and I to do the raffle drawing for some amazing items donated from Kuat Racks, Stillwater Summit Co., and Oakley. All proceeds went my family and Seth's family. Please read more about Seth and his story here. He was a great source of inspiration for all of us last year and even more so this year. You'll see why in a bit.
In the middle of all this little Emory, Bobby and Crystal Wintle's daughter, grabbed the mic from her father while he was telling everyone about Ainsley and her fight. If I can paraphrase what she said:
Ainsley is my best friend. I love her very much and I want to go to her school.
She attended Andrea's montessori school last year and was classmates with Ainsley. If someone got video of this I would trade you anything to get a copy. It was precious and moment I wish Ainsley was there to witness.
I am so grateful for what everyone has done for us. I felt like every rider, support crew, and volunteer was on our team. Cyclist are a great class of people. But gravel grinders step it up a notch and you all showed it.
Emory Wintle Photo by Keith Reed
Andrea, Ainsley, and George with Andrea's LR100 quilt. Photo credit 241photography.com
Like last year the talk was all about the weather. 2 weeks out we were looking at clear skies and highs in the lower 70's. 2 days out and we were looking at light showers all day with highs in the lower 60's. For some this chance of rain was a no go. Either they had gotten stuck in last year's red clay or they had heard the stories and seen photo's of destroyed derailleurs. For me, it's part of the challenge. What clothes to wear, what size tires to go with, do you spray down your frame with PAM?
Jim Bruer and his ravaged Cross Check
No buno Campy
This year with more experience and a new proper "gravel" bike I set my goal to finish in 9 hours. The day had potential for light rain in the afternoon. I was mentally prepared for hike-a-bike during the last 4 hours. Thankfully the rain never came and unlike last year we had a bit of a tail wind.
The ride started out beautiful. As soon as we hit the gravel on 19th we had the sun shining through the fog and dust cloud created by the lead packs. I purposely took it easy this first section. I've ridden this stretch so many times I know how fast I can go and too fast means I would burn out before the climbing began. The first 30 miles were good. Though I was having issues getting food in my mouth. I picked up a Hammer Gel Flask and filled it with orange Gu. In theory this would give my less wrappers and trash to stuff into pockets. What I learned was when it's cold enough the Gu is too thick to squeeze out. I then learned to store the flask upside down in my jersey pocket and let gravity help me. I was also having a terrible time opening a Lara Bar. The usual teeth ripping wasn't working. So I then moved to a lovely salted carmel Gu. Ripped the top open and then it flew out of my hands. After that I decided I would have to stop. I was staying ahead of a pack if I remember correctly contained Eric Benjamin and AJ Van Grinsven. I stopped to eat at a turn and they blew past me. Then I see Trevor Steward roll up. He asked if I was good, gave him the thumbs up, and proceeded to jump back on the bike to ride with him. Turns out we would ride together most of the day.
Going west on Grandstaff was tough. The climbs were starting to build up in my legs but I knew Brethren was coming up. The biggest decent of the day. It's one of those roller coasters hills where as you ride up to it drops off sharply. You can see the bottom way below. Coming up on the turn onto Brethren I see Adam Gribben stopped at the turn. I gladly stop next to him after the climb up Grandstaff. This is one of the knuckleheads responsible for the Land Route. I got a laugh out of a couple guys making the turn and warning us of the fast decent and "sharp turn" at the bottom. We know all too well and they didn't know that sharp turn is pretty wide now. Still fast though. You'll hit 30+ MPH while dragging your brakes the whole way down. The hydraulic Hope V-Twin brake system worked great on the bike.
I pulled away a bit from Trevor and Adam because I thought I was feeling good. But what always comes after a big descent? A big climb. I'm still figuring out my legs on these long rides but it seems after 35 miles they like to cramp up. And on Deep Rock road they did. This time as soon I started feeling it I hopped off the bike to stretch and walk it out. It wasn't working at quickly as I liked. Took some margarita shot blocks, ate a banana, drank my water with Aclimate in it. After 5 minutes I got back on and took it easy. Then around mile 40 on a little climb my right hamstring and quads locked up. I didn't make it up the hill. I instead sat down in the grass and tried stretching. Many people passed asking if I was OK.
Here's the thing with these gravel rides. Almost every single rider I believe would stop and help another rider if they asked. And asking is by no means looked down upon. I hear this is not the same with other cycling events.
After sitting and stretching and eating for another 5 minutes, Trevor and Adam caught up to me. They stopped to make sure I was alright. I got back on the bike again and we rolled on together. Turning south towards Carney we tried our best to work together against the head wind. This is the section of the course that has a guaranteed head wind no matter the forecast. I'll want to call it little Kansas. The higher elevation and openness just encourages the wind to punish you.
I pulled for the group for a bit and then dropped back behind Trevor and Adam. We were working together and for the first time I felt the benefit of this kind of team work. After maybe 2 miles Adam mentions that Trevor was going to pull us both the entire way to Carney. As soon as he spoke those words Trevor pulled off. Then we got split up at a road crossing. Adam was falling far behind. Trevor decided to slow down and see what Adam wanted to do. He was hurting. Trevor then caught back up to me. Adam has given us permission to drop him. I honestly didn't think I would see him again.
The last couple miles heading into Carney as so deceiving. I think it's the slow elevation gain mixed with the winds. We finally pulled into the check point and found my marvelous wife with a table full of food. I don't know if the pros get this good of treatment. As we rolled Brett Stevens was rolling out. Andrea had cracked the whip and wouldn't let him stay and wait for us. Good thing too since we took about 15 minutes. I got my wonderful Chipotle bowl in my belly. Trevor got his bibs changed and we were ready to roll out when Peter Barlow came up. I hadn't seen him since the start. Was glad he made it. But once again Andrea would not let us stay. As we left it started to mist on us. I was having flash backs of last year's checkpoint and the rain. We left before 1 pm. Last year I didn't get to the check point until 2 pm.
Heading west we rolled on not looking forward to the last southern turn and the wind. We were moving good, taking it easy on almost every climb. The food, pickles, and brief sit down at the checkpoint restored my legs but I knew I couldn't push it. The sandy sections made sure you didn't go too fast.
Heading north things got fun. Wind at our backs and we were rolling fast. Well fast for us. Heading into the tiny town of Meridian you think your getting a nice stretch pavement. But the next 2 miles is long uphill climbs. I've been told this is the highest point on the course.
Crossing highway 105 and we are back on gravel. At this point I knew some rough roads were in store for us. As soon as we turned on College Ave. we decided to let some air pressure out of the tires. I wish I had done this sooner. It made the ride much more comfortable. The new CX0 tires worked great at what I'm guessing was around 30-33psi tubeless.
College Ave. is the road I passed multiple riders last year. Some with broken bikes and some just calling it quits, not knowing how far they would have to walk their bike. This road was absolutely unridable last year. The mud stuck to your tires and kept laying on. Just like making a snowman in good packing snow. Tire clearance didn't matter on this road. This year the road was still rough but thankfully dry.
My bike last year on College road AFTER I had scrapped an inch of mud off the tires.
The infamous Triple XXX road. Yeah that is how they spell it. We just call it Triple X. Last year a lot riders got caught in the rain on this road. A lot of derailleurs were sacrificed. This year it had a secret oasis. And we had passed the point at which Trevor's bike blew up last year. Things were looking good.
Nice seeing you out there Michael Craddock and thanks to whoever the other guy is.
Triple XXX leads us into Coyle. Here you start feeling so close but still have 20 miles to go. Crossing the river and going down to 128th, that is just one twisty long climb back to the highway. I don't think Trevor and I said one word to each other during this climb. Crossing the highway by taking the detour around the construction be catch up to another rider. Didn't catch his name. Just that he was riding a Surly with bar end shifters. We are riding through the detour and many of the ribbon between the stakes we broken and flying across your path. Trevor the nice guy that he is stopped and retied them all. It still seemed like it could rain any minute and I knew 44th St. up ahead would be a trap if it did let loose.
Heading north on Hackleman I started feeling the yearning to finish this thing and it looked like I could still hit my goal of 9 hours. Around mile 91 Trevor pulled over, waived me on. Didn't think anything of it and pushed forward. I kept looking in my mirror for him and the other rider but I couldn't see them. I slowed at the 44th St. turn and looked back but no one was around. Looking at the time I knew I couldn't wait. 44th St. is just a series of rolling red dirt roads for 3 miles. If you can keep some speed you can make it a fast 3 miles. But when your legs won't let you push and you've got a head wind they are the last stretch of tough gravel/dirt road.
Cottonwood was a pleasant way to finish the gravel but it leads to the very unpleasant expletive, expletive, 19th St. A crappy paved road leading up to the Stillwater water tower. The highest point in Stillwater. The worse part is the depiction. After a steep climb you think you're near the top just to have a quick down hill and one last steep climb. God I hate that water tower. The rest is pretty much a long downhill coast into town. Should be relaxing. But no, enough of a head wind to make me work. I kept looking down at the time. 8:40. I can do 6 miles in 20 minutes right? 12th St. felt forever long. I finally turned onto Duck, stopping at a red light then turned on good old 7th street. The Finish line was in sight and the best part was you could hear it. I was still chasing 9 hours and speed up towards the finish landing in the arms of the now dubbed Bobby "Huggy Bear" Wintle. The emotional high you get from that Finish Line is unreal.
The beard got a little longer this year.
After finding the arms of Andrea at the finish line I looked down at my computer. 9:00:20 is where it stopped. Clearly I didn't stop it right at the finish but it was a nice confirmation of my goal. My official time was 8:57:40. Finishing 90th. Amazingly ahead of 51 other riders. Last year I finished 57 out of 63. One benefit of this finish that I didn't expect was the ability to cheer on other riders as they came in. I clapped for every single one. Some got me a little teary eyed.
Seeing Trevor get to cross the finish line in his own style. A can of PBR that he picked up at the secret oasis spraying all over himself and Bobby. Turned out he stopped for a pee break and then later hit a rock hard enough to lose half of his tire pressure. He spent some time pumping it back up. A mechanical with 10 miles left would be tough to swallow. But he eventually made it.
A couple minutes later our local pirate/professor crossed the finish line. Seth Wood had done it. Going from possibly never riding a bike again to finishing a super tough 107 miles of gravel. Inspiring to say the least.
The Professor and Huggy Bear
Later on Peter Barlow rolls across the line. I honestly wasn't sure we was going to leave the check point. But with Andrea's motivation and enthusiasm he kept moving. So glad he did.
More riders were coming in when suddenly Adam Gribben rolls across the line. I hadn't seen him since about mile 50. I know he was hurting but he freaking did it.
Two more SGG riders were still out there. Keith Reed and Austin Turner rolled in together. Neither got to finish last year. It was so cool to watch everyone cross the finish line this year. I also have to give an honorable mention to Sally Asher. She was dealing with some severe knee problems leading up to the race. She could of given up and thrown in the towel. But she pressed on and made it to Carney. Read more about her experience here.
What a great bunch of crazies
Looking forward to the rest of this year's rides. Gravel Slayer in Elk City, Oklahoma, Dirty Kanza in Emporia Kansas, and the gravel adventures around Stillwater. Land Run 2015 let's go for 8 hours.
George was great and was so excited for his Batman toy! We found a great soft one and it's a hit!
I always say how brave our sweet Ainsley is and tonight I saw the true bravery of her sweet little brother George. As I had to drop him off at Grammy's to spend the night he did not want to let go of me. I didn't want to let go of him either. I reminded him Ainsley had to go to the hospital tomorrow and that I would pick him up after nap. He said "home". Then I squeezed him right and told him if he would stay with Grammy and Bobo I would bring him a superhero Batman toy. With that sentiment he said "okay". As I left he said in his sweet Georgie voice "Bye Mama". He was being the bravest two year old in the world. I love you so much George and I am so sorry you have to go through all this craziness but I promise that you will always be known as brave little brother.
-Andrea
Recently, I was checking a few leftover gift cards that I knew I hadn't used yet. They were the last of my stash and I figured I would get them ready for grocery shopping this weekend. One of the cards only had 13.10 left on it and I knew it hadn't even been used for a coffee. I looked at the history and found the card was charged 5.95 for the purchaser for buying it for me, then 5.95 for November and 5.95 for December card holding fees. So my $25.00 gift card only had $13.10 left. And the buyer had to pay 25+5.95 hmmmm.
This made me angry, and so I immediately posted about it on Facebook. Which leads me to this post...you find out someone is sick, critically injured, terminally ill, or has lost a loved one. What can you do to help???? Here's some options-you don't have to do ALL of these but for some people you can find ONE that will work.
Number One-BE PROACTIVE
They do not want to ask for help. They might, but it's hard. Be proactive and do stuff for them.
If you see someone struggling. Or you sense it, then they probably are. Do something if you can to ease their stress. (benefit to you...you feel awesome too!)
Ideas-
Go clean their backyard up.
Mow for them.
Clean their house.
Fold laundry.
Go shopping for them.
Bring them a coffee or tea.
Offer to take the trash out.
Buy them dinner and drop it off on the porch then call and say it is there.
Make them some food that can be frozen and drop it off.
Visit them at the hospital if they can visit but be fast.
Give them a gift card that doesn't expire, charge you, or charge them.
Gift groceries & healthy snacks
Give blood
Give money
The key here is GIVE. It Doesn't matter what you give, just do it if you can.
Number Two-BE SUPPORT THAT IS AVAILABLE ANYTIME
Give them your phone or email and tell them you are there to support them. Day or night.
Check in on them. Send them a text that says I am thinking of you and sending prayers.
Post on their Facebook account if they are active on there.
Call and leave a message.
Overall, just show that you are supportive of what they are going through. You might not understand it, but they might not either so just say you are there. You are present. You are part of their needed stability.
Number Three-DON'T WORRY ABOUT RELATING TO WHAT IS GOING ON
Be an ear that's listening, a shoulder to cry on, or just go laugh with them.
If you have a funny story tell it. If you have a real life issue tell them but remember to be there for them and let your issue wait awhile or be taken up with another compadre. Just talk or listen for an hour or less and then go. They may need human interaction that isn't just about the current emergency.
Number Four-BE AWARE OF TIMING
They may only be able to see people for five minutes or even two minutes. Their parent or kid may be so sick that they cannot be exposed to any illnesses so therefore must live in a hermit like status. Make sure you are aware of sicknesses you have been exposed to. Always wash your hands when you enter their home and take off your shoes as well. If they aren't up for visitors don't push it. If you sense they need to get out of the house offer to pick them up and take them to coffee or for a walk. They will tell you if they can't or really don't want to do something.
Number Five-KNOW THEY ARE GRATEFUL
If they forget to send you a thank you card, or message just know that your gift eased their burden. Know that what you did is wonderful and they are better for it. They have a lot on their plate and cannot fill everyones egos so if they forget how wonderful you are, just know that you are amazing.
After our daughter got so sick we had so many people helping, giving, donating time and praying for us that we could concentrate our efforts on her and getting her better. If we didn't have all these Allies we wouldn't be where we are today. People's kindness has made our lives easier. With the money people donated we have replaced furniture, rugs, toys, beds, and duct work. We have been able to pay our bills, travel to doctors appointments, pay for food, pay for special snacks, pay off debts, pay for expenses while on the road and be comfortable while locked away in our house during scary times. We have to ask for help here and there but most the time our support team and Allies keeps on sending prayers, donations and other things we need. We are better and healing because of our village.
I hope this helps others when they find a friend or family member in need!
Best,
Andrea Peters
Thank you to everyone who gave blood today. And thank you to The House FM for putting this together.
Awesome and touching video made by The House FM to promote the OBI Blood drive on December 30th. So proud of Andrea. Isn't she beautiful!
http://youtu.be/drmh1H0sFSA
Thank you to the House FM for putting this together for Ainsley and everyone else that might benefit from the donations.
Just one story that shows you how important it is to give blood. Help this little girl and many others by doing so!
No cuts, No butts, No Coconuts...
That line is from one of our favorite Family movies Wreck It Ralph. I promised a hair cutting video but my hubs has been busy. So instead I will post a gallery of all the hair cutting that has taken place for Ainsley!
Click on the pics to scroll through. CAUTION ONE BAD WORD SHAVED INTO MY SKULL.
Andrea & Cari Cari chopped off her long locks.
Andrea phase one Andrea's good friend Julie came to OKC and gave her a hair cut. Chopping off around 8 inches of length.
Andrea phase two Andrea chopped off another four inches when it was time to come home.
OpalJean Hughes Ainsley's friend Jaci's Grandma chopped off her long beautiful red locks for Ainsley and donated them.
OpalJean AFTER
Jaci Ainsley's sweet friend Jaci chopped off over 8+ inches and donated to Wigs for Kids.
Jim Risenhoover Jimbo cleanly shaved for Ains.
Uncle Jonathan Ainsley's Uncle Jon let his children shave off his hair!
Andrea Phase three Chris, Ainsley and George all shaved off Mama's remaining Hair.
Andrea Phase three part a HMMMM....
Andrea Phase three part b
Andrea phase four BALD as a baby
Mama and Daddy clean shaved
Trevor and Cameron District Bicycles in Stillwater, OK held a shaving party for Ains.
Jim Bruer Jim helped the party happen at District Bikes.
Timm Timm shaved off his locks
AJ got an updated shave
Brett Stevens Chris and Ains gave Brett a pretty bad shave until he had the Downtown Barber clean it up!
Myla Stevens Even Myla let Ains shave the under part of her head.
Shaved heads!
Jasmine A fellow classmate of Andrea's from the OCU Montessori program chopped and donated over 10 inches.
Maggie A sweet girl named Maggie, that we don't know, found out about Ainsley and donated 8+ inches to wigs for kids.
****WARNING Some of these pictures will be scary to children so be WARNED.
"The Way We Were"
Mem'ries,
Light the corners of my mind
Misty water-colored memories
Of the way we were
Ah, Barbra Streisand! For the past several nights this song has been entering my head every time I start to go to sleep and I just thank God for where we are now. Because truthfully it was really hard and really scary while we were in the hospital.
UPCOMING EVENTS:
This Monday at 7pm (12/9/13) the Cub Scouts are doing a cake Auction for Ainsley. It's at the Westwood Elementary School and there was a story in the local NewsPress.
Here is the LINK: NewsPress Article
The Give Forward fund raiser ends in four days and even though we didn't hit our goal, we have been able to fund so many projects around the house and give the kids a Christmas they won't forget.
**UPDATE we got the GiveForward Fund Raising page to keep going so we will continue to use it, especially since the next 56 days will include multiple stays away from home.
Here is the LINK: Give Forward Donations
We have used the funds for multiple travel expenses, learning resources, new duct work in the house, paying off debts, paying our bills, paying for gas, replacing old toys, a new bunk bed, food, and babysitting for George. We also had many items and time donated by so many different community members, family and friends that we are so very grateful for and humbled by the help.
We will continue to fund raise for future travel, medical things that aren't covered, food, bills, and time occupiers. In the future we plan on helping fund raise for more leukemia awareness and of course other options in care.
We have the OSU O'Colly Newspaper doing a story on us and we revealed pictures that many people didn't see so I thought I would reveal them now.
****WARNING Some of these pictures will be scary to children so be WARNED.
These are for learning purposes and for other parents out there that have to go through this. (And for our history.) We actually showed Ainsley and George all of these and explained all the various details of what was going on in each picture. For those parents that have a pediatric ICU psychosis or Post Traumatic Stress syndrome happening with their child the thing that really helped Ainsley was going home, weaning off the high doses of drugs and the ketamine they gave her after a spinal tap.
We still have two more 56 day rounds of intense chemo (starting on 12/17/13) and then we move to two years of MAINTENANCE chemo. This is a true marathon for our family.
Again, we cannot thank everyone enough for EVERYTHING! Prayers, yard work, money, toys, gas cards, gift cards, food, more prayers, and the overall support.
-Andrea
Visiting Family in Indianapolis One Week before ER
Extremely large belly three days before ER and lethargic
Weird bruises on feet and hands showed up day before ER. Petechiae bruising
Hand Petechiae hours before going to ER
The helicopter that took Ainsley to OU Childrens
When we arrived. They were braiding your hair. And we learned you may have Leukemia.
Our beds for the evening.
Coffee after we found out leukemia was in the peripheral blood.
Coffee
We got to see George the next day.
George visit
Infections were rampant. We had to wear gowns and masks when in your room.
Your output was not matching the input and you started to puff up.
The place we discussed everything when we got the 100% leukemia diagnosis.
The outfit I brought when I thought we would be going home after a night.
You were slowly getting more and more bloated due to all the drugs and liquids.
Your sweet hands were so stretched out and puffy.
They started to worry about you being so puffy and we discussed dialysis.
You were getting more rashes and bruising.
The first dialysis machine
They installed two lines in your neck for the dialysis to run.
Your skin starting to tear from being so swollen.
You got orthopedic booties to sleep in so your hips, legs and feet wouldn't be damaged.
Dialysis was working and you were looking so much better.
Mommy milk for George, even though he didn't drink it. I donated it to a new mom.
Your very first round of CHEMO.
A feeding tube was added so you could start to get more nutrients.
Your Induction Roadmap.
Cultures on your lines to make sure they are still good.
My sweet babe.
Daddy gets a bike ride in.
New dialysis machine works 100 times faster.
Finally we get to see your sweet eyes again.
You wake up but we stay in the PICU until 8/23
An ultrasound of your appendix.
OT and Physical therapy twice a week
We get moved to a new room on the 10th floor
You have to sleep with arm restrictors to not rip out your PIC line in your arm and to not scratch yourself and then the booties to keep your feet from dropping.
fold out couch bed was very comfy compared to the floor.
Finally got to see outside.
Your hair started falling out
First time to wash your hair in a long time
hair loss
trying to eat with daddy's help
Grammy stayed with you and Mommy and Daddy went on a date for their Anniversary.
Still not wanting to talk and PTSD is pretty bad around nursing/doctor staff.
George visits
First smiles since beginning of AUGUST
family pic
How we slept for most nights taking shifts to care for you at nights when nurses were busy.
Getting some sparkle back
Your board in the room.
Finally get to go home 9/6/13
At Grammy's with brother while our house was being painted inside.
Finally taking some food in on your own. A fry and cheese sauce was a big deal that day.
At our house in your new room.
Your first piece of art since you got sick.
Mommy shaves the remaining hair on her head
We keep working on trying to get you back
Another surgery. PORT installation
You start talking and singing as if it was all a dream after a dose of ketamine. (yes that rhymed.)
And we go back to real world.
The little Mermaid came to life this year. Ainsley and George loved dressing up and Andrea found her happy place crafting these amazing costumes.
There are rough days and good days and sometimes it's moment by moment. Lately, I've been thinking about our journey. It still is surreal at times to think about the medicines and drugs we are putting into our daughter's tiny little body. There are many sick kids out in our world. There are children that have to deal with other hurdles as well. The parents and grandparents and friends all join together to hopefully provide the best care possible.
Tonight I feel blessed. Blessed that we are a village. I'm blessed that you all are supporting us. I'm blessed each and every day by the strides Ainsley is taking and how brave she is. I am blessed that her little brother George is her best friend and even though he acts his age most of the time, he gets it.
I pray that we have good numbers on Friday and treatment can continue.
And tonight I just want to say, I'm humbled and grateful for our village of support.
-Andrea
Dear Ainsley,
Tonight I left in a hurry, shopped and browsed around and when I got back you walked to me. It was similar to when you were 13 months old and took your first unassisted steps. The smile on your face was priceless. You moved your arms with determination. Your skinny little legs carried you shakily to me and I smiled and felt the pride that only a mother can feel.
However, I am even more proud of your extreme dedication to recovery. You're doing it Ainsley and you are a true testimony of life and love. You are the best little girl in the whole wide world, in the world! (She use to say that to me but said you're the best mommy in the whole wide world in the world!)
I love you.
-Mommy
Andrea a couple weeks ago created a community page on Facebook for Ainsley. It's a great way to keep up with the more frequent updates.
So stop by and Like the page.
Ainsley Jane's Allies
A tiny voice emerged and she finally was ready to talk again.
Two months ago Ainsley decided that talking was for the birds. (And really who wouldn't!)
She wasn't being heard, she had lost all her control, and she woke up full of catheters, IV's, and cancer. Doctors poking and prodding, nurses calling blood pressure cuffs hugs, and her parents in masks and gowns.
Today she spoke in paragraphs.she started talking again Monday 9/23/13 after her spinal tap. She asked Daddy for juice. I'm grateful that we stay with her through every procedure even if she is sedated now, because if we would miss a critical moment we could really mess with the whole rebuilding trust part.
She also is working really hard to be mobile again. She is rolling, crawling and triking around.
We are ecstatic and grateful.
I asked her today why she didn't want to talk and she said she just wanted to be home.
I'm grateful we are here. And we couldn't be here without everyone's support. Thank you!
-Andrea
Today we found out that Ainsley is officially in remission.
Now before all of this I had always heard to term remission used with cancer patients. But I never understood what it really meant. For Ainsley it means that the amount of leukemia found in her blood and bone marrow is low enough to where it's now producing normal healthy cells again. But it doesn't mean she is cured or this fight is over.
If we stopped chemotherapy now there would be a good chance the leukemia cells would return. That's why treatment will take over 2 years.
The next four weeks will be tough. Once a week we will make the trip to get chemo. New drugs with new side effects.
Ainsley has made huge progress with her appetite. Done with that feeding tube. She still doesn't like taking meds orally but submits when bribed with cupcakes or a toy.
Speaking of cool toys. Ainsley was just gifted an iPad mini from some awesome friends. Totally unexpected. Ainsley will love it.
My parents have been extremely great helpers. I captured these two sweet pictures and wanted to share. The tenderness of everything is so beautiful.
-Andrea
The port has been placed and we pray that her body doesn't reject it or any bacteria gets in there. We had a long night and now we are all going to grab some zzzzz's. Today is also meaningful because Chris' boss and the Oklahoma Blood Institute are hosting a blood drive for Ainsley at the Student Union. Every donation in her name is like a credit for her for future transfusions. If you didn't make it then you can still donate in her name. She has already had over ten transfusions so this is a big deal. Blood and platelets transfusions are very common for blood cancer patients and blood disorders. We are grateful to all our supporters near and far.
-Andrea
Being a caretaker is hard work. I never thought, "Yay, Bon Bons and TV all day." But I go a little stir crazy when all I'm doing is guessing for two toddlers. One two year old that prefers "uh" over "please, pass me the apple" and one four year old with post traumatic stress and cancer.
Seriously I'm so thankful for my helpers!
Andrea
I did it. I shaved off all my hair to support my baby girl and show her that bald is beautiful! Thankfully I had a pretty good head and no weird lumps! Video coming soon.
You smiled today. The first smile in 21 days. You smiled for George. Then for daddy and mama. Then for Grammy and Bobo.
Today your weaning was similar to a four year old version of Trainspotting. So I am thankful you smiled, because we are going crazy and I can't even imagine how you feel.
I love you sweet baby girl. Many people love and adore you. You can do this and we will be there all the way.
-Andrea
Home
Where my thoughts escaping
Home
Where my music's playing
Home
Where my love lies waiting silently for me
Ah! Simon and Garfunkel you complete my world, but our journey home has been so tiring.
Don't get me wrong, I'm grateful that we aren't sleeping in the hospital. I'm grateful that nurses and doctors aren't poking and prodding and talking and watching everything all the time. I'm grateful to have George and my parents and fresh air.
But I miss my baby.
I miss my toddler.
I miss Ainsley.
Cancer treatment would be a whole lot easier if I could do it with Ainsley! If I could just have her back.
I know she will be back, but for anyone that knows me you know my patience level is a negative two. I'm ready to have her back, fighting with me!
I know you all are too.
Especially her daddy and brother.
-Andrea
I remember when I was four or five and I learned about death and really grasped the fact that people, animals, and living things don't come back after they DIE. I remember being so sad and scared that my parents would die. I cried a lot when I learned about death. My parents reassured me they weren't dying but I always wondered what if? And even though we were raised Catholic and had faith of an everlasting life, the mortal life loss seemed very huge to me.
Fast forward to now-
Ainsley has survived great trauma. She is like a war veteran now and is starting to have flashbacks. She even is like a drug addict having withdrawals from major opiates & benzos.
So not only do we deal with leukemia, we deal with the rest of the story.
As I type this, I just heard my sweet baby say "No, no, no, I don't want to die. I don't want to die."
No mother wants to hear her child say this, let alone be dreaming of this and having flashbacks.
Yesterday for 18 hours she had massive withdrawal symptoms. There were two hours where she wasn't wringing her hands and moaning. The rest was torture for me.
And even worse for her.
Last night around 2am she finally slept. Then woke up with an explosive poop then slept again, then toxic waste spill poop, then slept again. She is still sleeping off and on at 11am.
Peacefully and traumatically sleeping.
-Andrea
I loved to smell my mama's hair
It was sweet and fruity.
I loved to see my mama curl her hair in hot rollers and then shake them out upside down and spray them with the pungent hair spray.
I loved to watch the new colors and cuts she would try out even if she didn't love them, she always doubted her beauty.
I loved to nuzzle my mama's hair it was warm and soft.
As a mother now, my kids enjoy pulling my hair, playing with my hair and brushing my hair.
So here is cut number one! Thanks to Julia Peterson of Anne-Marie's Salon for the cut and friendship.
After this a fun shave. Then Mrs. Clean!
-Andrea
"Gimme head with hair
Long beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen
Give me down to there hair
Shoulder length or longer
Here baby, there mama
Everywhere daddy daddy
HAIR"
I have loved the music from the musical HAIR all my life probably because my mother raised me on wonderful 60's and 70's music! (Carole King, Eagles, Simon and Garfunkel, Bread, Beatles, Carpenters, John Denver, Jim Croce, Janis Joplin, Aretha Franklin, Anne Murray, and many more are the musicians that pop into my head tonight. But anyways back to HAIR.) Ever since Ainsley started losing her HAIR (three days ago) I've been watching this weird process of chemo working it's "magic". It's killing cancer cells, but its non discriminating it also kills the rapidly growing hair follicle cells. SOOOOO when I brush her hair we literally get a full brush. At home I admit I don't clean my brush everytime I use it and I lose a lot of hairs each day, usually Chris has to remind me that my brush looks hairy and then I clean it out probably once every week. When I clean it, its like a big hairball. That hairball is equivalent to what Ainsley is losing four times a day. I am pretty sure she will only have strands by next week.
Why am I blogging about hair loss in my four year old again. Because HAIR helps define many of us. When you start to lose it, it kind of sucks. Now I appreciate good bald heads, I absolutely love it when my husband shaves his head, he is very handsome and with a pretty shiny head it just makes his eyes sparkle! (hahaha, he is going to love that)
My dad is bald, my brother is balding, many men in my family have baldness happening and they don't celebrate it's beginning but eventually learn to love it. I've seen gorgeous women with bald heads and many that have thinning hair and they are all gorgeous.
So why is it different?
Ainsley is FOUR. She has had orange hair since day one. She even had orange cradle cap! (I called it cradle crap)
She had the straightest, finest, thickest hair that loves to get tangled up and loved to be matted in back. Every time, someone says "my what a pretty little girl you are with your red hair" she was reinforced that her hair was pretty, it was a part of her, and it was red. (We always laughed about how our hair is actually orange and people said red.)
Society reinforces physical appearance and so now we will just have to go forth and show everyone how awesome being bald can be.
Tomorrow, I plan on cutting off most of my hair and donating it with the help of my friend and hairdresser. When we get home and Ainsley is ready I will shave it down to a buzz and then clean razor it!
I will be bald with my daughter as long as needed because we are beautiful no matter how we look. This life lesson needs to be shown to the world and most importantly to my daughter. (Maybe to myself as well)
-Andrea
After 13 1/2 days of being on the drugs for cancer Ainsley is starting to lose her beautiful red hair.
It's really happening.
It started Monday afternoon 8/26/13, day 13 1/2 of the induction phase. And today, day 14 Chris and I will have to tell her what is happening.
Normally, this would be a conversation where she asks "Mama, why does the medicine do that?" "Dad, will my hair grow back?" And we would give her honest real answers. We would tell her how awesome it can be to shave your head and how brave you have to be to go through all this. We would show diagrams and go over the reasons. We would read her the stories from the hospital and Aunt Aleia describing Chemo and Cancer. We would explain how this is our new mission, to become advocates for A.L.L. and for other sick kids.
But in our case she might not ask those questions and we might have to figure out a new way or wait.
I had planned to do a fun thing where I let Ainsley cut my hair and then we dye it whatever color she wanted (probably pink) then we would shave it or something awesome, but yet again my idea is crushed.
Ainsley is not here in full. She has reverted back to a safer place. And we are waiting for her to come back to us.
I cannot imagine being a four year old running around, singing, playing, talking, and being awesome one day and then just thrown into a full swing life change. Here is what I, her mother think she is thinking about or feeling. But I have no real way of knowing.
Getting sick and then waking up in a hospital with a tube down my throat, two tubes coming out of my neck, three tubes coming out of my leg, my feet in ortho boots, a pulse ox reader on my toe, a blood pressure cuff on my leg, a line in my arm and multiple beeping alarms going off all the time. The smell of rubbing alcohol, soap, hospital, bleach, sanitizer wafting throughout the air. My stomach is sick from chemo, my body hurts, I have fevers, I have so many tubes everywhere, I am wearing a diaper with a catheter, and I have no control. My parents dressed in yellow aprons and blue masks all the time, trying to talk to me. Random strangers constantly standing over me; Doctors, nurses, respiratory therapist, physical therapist, child life specialist, cleaning lady. So many people everyday always talking, always coming in, always seeing me exposed laying here.
So when they took the respirator out she said a few words and then she reverted back. She started slowly showing glimpses and then she got a feeding tube out and we had to put arm restrictors on her arms. She started itching and scratching and we had to put socks taped on her hands like an infant. So she went back to infant state.
Our Ainsley is currently taking a vacation and we have stand in Ainsley. The infant like sweetheart that chooses not to talk, not to respond, and to just do her best to get by. When her hair started falling out it became even more real.
She had such a matted mess from 18 days in a bed that tonight I decided to try and brush it out and then ended up cutting it with suture scissors. I only cut the back mats but as I did clumps of hair were coming out with them. It reminded me of a movie I used to watch as a child. Jane Eyre. There was a scene where Jane is in the orphanage and she does something wrong and the mistress violently chops off her hair in large clumps.
I wasn't being violent or anything like that but the clumps of hair were just so sad to me.
We have the same color of hair. It is a beautiful strawberry blonde that gets dark in the winter and light in the summer. People always compliment my ginger babies and as George turned blonde this summer Ainsley now will lose hers for awhile, I feel like I am losing a piece of my little babies. And it makes me a little sad.
So here we are. People are living, people are dying, friends are being amazing, random people are donating to our cause, and supporting us, prayers are being answered, prayers are being felt, People are going to school, My baby boy is bonding with his grandparents, and my baby girl is reverting to a safe place until she is ready to deal with all this craziness.
LIFE JUST GOT REALLY REALLY REAL.
-Andrea
Do you remember when...we used to sing! Sha-la-la-la-la-la-la-la-la-la-la-tee-dah!
Day sixteen and we have spent two nights in a bigger room on the tenth floor. Ainsley is slowly coming back to us and her bed head is in full swing!
They are working on medications still but she is improving and getting back to a new normal.
Today is our sixteenth day so I'm going to find 16 wonderful things at the hospital and post pictures on Facebook! I will try to post here as well.
Today I am grateful for God, my family, my friends, our supporters, and random angels that continue to love us.
-Andrea
When we first arrived at Children's hospital we learned our little girl was very sick, she might even have leukemia.
Fast forward a few days...sepsis, infections, contact restrictions, anti-biotics, anti-fungal, pain killers, sedation, platelets, blood, fluids, diuretics, chemo, steroids, asthma meds, benedryl, diapers, iv's, spinal taps, and more.
She would wake momentarily, mostly when they moved her and wildly open her eyes and she would scream SILENTLY. She would mouth the words mama. Or No.
Nauseous was the feeling I would get. We would talk her through it, we would rub her forehead, and we would pray.
Pray for her to go back to sleep or just relax.
Fast forward...she's off the ventilator and off the super strong meds and she has withdrawals. Withdrawals like someone coming off heavy drugs.
She spoke when she first came off the vent. Her little sweet voice so weak and trembly. She even asked Chris to lay with her.
Then she pulled her feeding tube out.
She would scream a little sad growly scream for no. And sometimes stick out her tongue but now she won't even do that. She's pulled the feeding tube out twice. It had to be replaced.
Her spirits are down. She is still on a lot of medication. Her throat probably still hurts. She has no control and no independence, except in speech. She chooses to not speak to anyone right now which is so hard! She has been telling me stories since she was two months old.
Tonight, I will appreciate her resting her voice- for later she will need to sing songs about this traumatic event & spread her lovely stories to the other children of the world.
-Andrea
The Chosen Mothers
By Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."
Finally, He passes a name to an angel and says, "Give her a child with cancer."
The angel is curious. "Why this one God? She's so happy."
"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."
"But, does she have patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment wears off, she will handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps -"Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."
"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."
8/10/13 Right now we are in a trance of craziness it feels like a nightmare. Is this real?
You limped.
You got sicker.
I made them not do more tests.
Until we knew it was bad.
They life flighted you from Stillwater to OKC OU childrens medical center.
The doctors are saying leukemia and viruses and your poor little body is fighting so hard.
You are so beautiful and perfect as you lay in your little hospital bed. You have lines in your leg, monitors on your chest, a respirator tube and feeding tube and iv in your arm. You absolutely hate the blood pressure cuff. And so do I because you wince everytime it checks you.
But your blood pressure is not good.
Your platelets are not good.
Your white blood cells and red blood cells are confused.
You've got rhinovirus.
You've got endovirus.
Your kidneys are angry.
And your entire body hurts.
You are safe. You are loved. You are perfect.
One day, I will say remember that time when you got uber sick and fought like a champion? Dang your body is so strong, must be the breast milk, KIDDING!
And we will laugh and cry and reminisce about this weird surreal time.
I'm wondering if this is all to make me slow down? Stop building a Montessori school and just concentrate on you and George.
Is this God saying "hey Andrea you need to take care of your own kids only?"
Your dad is doing well but he is a wreck inside. We both are so worried. George is hanging out with Tori and then the grandparents he misses his best friend-You.
When you get better I think we should go to the ocean or something awesome like that. Maybe Disney. Ireland. Italy.
Maybe we can move and start fresh somewhere. Colorado where the humidity and heat don't make us so cranky. We can convince everyone to move with us!
8/11/13
There's a baby crying next door and you're still on sedation.
We got the positive diagnosis today
Precursor b ALL
Your uncle Philip and Patrick and auntie Kathryn all came in and saw you
Grammy and Bobo too and father Ken blessed you with anointing oils.
We listened to two hours of information from oncology, signed countless amounts of paperwork and feel confident that we are doing the best for you.
George misses you. We miss you too!
Tomorrow we wean off breathing tube and start chemo.
Cari (little Grey's mom) and Daddy started a website to raise money to help, you have $2,000 in like two hours
I closed the Montessori school it's all about you now baby. We can kick it!
8/12/13
You're at $4000 this morning. I can pay back all the parents from the school now. I am starting to feel relief and able to be strong for you.
You are still fighting so hard and are so very sick. I miss you so much. I keep singing to you and giving you sweet kisses.
We got to sleep in a bed in the Ronald McDonald sleeping rooms, I slept in your room until 7am then took a nap and shower and came back.
You've got more weird spots showing up, little worrisome since we are supposed to start treatment today.
You are so strong.
I can't wait to hug you and hold you baby girl.
Mommy loves you.
-A
July 23rd, 2013 would be the day of this story's start. We had Montessori Morning where a total of 7 cool kiddos worked together, played together and ate together from 9am-Noon. After that we had some rest time and then we had friends over that were getting ready to move to Alabama. Ainsley and her good friend were playing around and she fell on her bottom. She cried and said her bottom hurt and I thought she probably bruised her little tailbone. She limped a little and then was back to normal. I checked for bruising the next morning but she was okay no bruising and no more limping.
July 26th, 2013 my mom took my two kids to the local Kids Museum, the Wondertorium for the morning and then we met for lunch. While walking to lunch Ainsley stopped dead in her tracks and then started limping. She said her legs hurt, so we left and decided to rest at home after picking up some drive through lunch. She limped all day and I texted Chris to tell him how worried I was and I sent him a video of the limping. We talked about how she had fallen and thought maybe the injury had returned or that she could be reacting to gluten the way that I do, joint pain and sore muscles, or the other option of a four year old-growing pains.
July 27th, 2013 Ainsley was still complaining of leg pain and walking with a slight limp. I thought for sure it was growing pains because she seemed a little more tired then normal, ate well and actually agreed to a nap instead of fighting me off.
July 28th, 2013 The limp got better and Ainsley seemed to play more but I was still worried so I researched growing pains and it said for some children they could last a few weeks.
July 30th, 2013 I took Ainsley in to see a doctor and they were worried about her bruises on her shins and her enlarged spleen so they wanted bloodwork. We tried but she was freaking out and I was by myself, so I said I would come back the next morning.
July 31st, 2013 My mom and I took Ainsley in to the lab and they drew blood after digging around in her arms for a few tries. She literally was foaming at the mouth. The whole time I just kept telling her "you are safe", "it hurts but you can do this", "mommy and daddy love you". She got to pick out any thing she wanted from the store and ended up getting a SnowWhite doll with fancy shoes and some Circus Peanuts (those marshmallows that taste like bubble gum, they remind me of the late Bennie Hill my great uncle). Later that day I got a call from the Doctor. YOU DON'T usually get calls from doctors, red flags were flying. She said, well Ainsley's labs are looking kind of different so I am going to have the hospital lab check them. Some counts look kind of low and I want to tell you that could be bad news. I was like okay, should we not go on vacation. She says I will call you back when I hear from them but worst case scenario it could be lymphoma, leukemia, or a virus or flu. I will know in around 4 hours.
So for four hours I worried, I didn't tell my mom because she would flip. I called Chris and told him and we agreed that if it was bad we would sell whatever we could and go to Mexico for the Gerson Therapy to heal her before chemo or radiation because those would be last choice efforts in our book, we would rather do natural healing first then go on to more extreme measures.
After two hours the doctor called back and said the tests were back and she has some low platelets but it could be from the stress of taking the blood. You can go on vacation but come back and see us when you get back and if she gets fever or anything while you are away go to a hospital or a doctor immediately.
I was pissed. HOW dare you tell me my kid could be freaking full of cancer and then say well just kidding its not. FUCK. (don't worry I cuss sometimes to vent my anger/sadness)
July 31st evening: We praise the LORD that our child is okay and we head to Indianapolis to have a visit with Chris' family.
August 1st: We arrive. After an all-night drive we are finally there and we get to hang out and then take a nap at the hotel. We meet back up with everyone for a swim and then go to Chris' mom's house. Ains doesn't want to swim for very long but then George doesn't either so we figure it is the cooler weather.
August 2nd: We convince everyone to take it easy and go play at the park. Ainsley wants to swing for a bit and then ride her bike once, then she sits with the grandparents and Great Grandparents for the remaining time. Very unlike our active little gal. But we know she has an enlarged spleen and hurting legs so we encourage her to rest and just visit.
August 3rd: We visit the cat rescue that we see everytime we go to Indiana. It's a good cause and a cool place to really learn some wild cat info! http://www.exoticfelinerescuecenter.org/home.html
We cook out that night. We celebrate the George's birthdays, the Anniversaries coming up and we have grilled food and gluten free yummies. The kids play and we all just enjoy life.
August 4th: We go to church and Ainsley refuses to leave our side. After church we go to lunch with the entire family she eats some mac and cheese and french fries. Then we head to Auntie Mandy's house. George pushes the kitty around in a stroller and Katie brushes my hair, Chris visits with all the grandparents and his parents about cycling and Ainsley lays on the couch watching Katie.
Later that day we head to Ohio to visit my cousins family. When we get there we walk around their gorgeous new house and then head to a late dinner. We get to see the Ohio river and have some Joe's Crab Shack. Ainsley attaches herself to Eric and Kelsie my cousins kids that are 13 and 11. They love the attention. George tries out some crab and Ainsley chooses mac and cheese again. (We rarely have it at home so it's a new found fav)
August 5th: We all sleep in and take it easy. Keith makes us omlettes and Ainsley decides on scrambled eggs. She is still complaining of leg pain but it goes from one leg to the other. I completely think she is growing because she is eating well and still somewhat happy. Just touchy and sensitive and tired.
We go to IKEA to get things for my at home business and then I take the kids back to their house while Keith, Emily, and Chris go see the TREK bike shop.
August 6th: We decide to just rest. Ainsley eats and then sleeps all day. We watch movies and rest and then leave that evening around 5pm. We take some tylenol for the pain and get on the road.
Throughout the night there are storms that I have to pull over for, the sleep that I haven't had is kicking in and I pull over to sleep a couple hours. Chris drives then I drive then we finally make it home. Ainsley is to a point of exhaustion and pain that we have never seen before I think for sure she has the flu.
August 7th: She gets a fever. I think 'oh there we go, now her body can fight this'. It has to be a virus along with growing pains or a weird tailbone injury. We are supposed to go to the doctor but I cancel it because I want to see if she can get better on her own. She starts being super sensitive. LIKE a flu feels.
August 8th: Fever breaks and she is moving more but still complains when we touch her or George tries to play with her. Weird bruising shows up on her insteps of either foot and her palms of her hands. I take pics to document everything. She has weird red spots showing up too. I text my nurse friend throughout all this we are thinking she might have more then one thing going on and could be appendix. She reminds me to go to the ER if my mommy alert starts going off. Then it gets bad. I call Chris, he says he is almost done at work. I call him and say I think we should take her to the ER and they can do everything there to get rid of this thing. He agrees and starts home, we pack up some things and get George to Grandfather's house and take her in.
We get to the ER, get them the story of the journey here and they start trying to get blood, a vein bursts, she isn't foaming but she isn't happy. Thankfully, I knew the nurse Amber, that did the intake so it was comforting to have her there. I tell Ainsley to look at her pretty red hair, and tell her that one day her hair is going to be so red too, but maybe not as dark! They tell us she is super sick. They need to get fluid in and have to do it into her shin, into the marrow. They drill into my baby's leg and start IV fluids. They then tell us they are going to life flight her into ICU to get more answers. Do we want OKC or Tulsa? The nurse from my hernia surgery is there suddenly too, Judy. It's a good distraction to see another comforting face.
We choose OU in OKC because they did a pretty good job when we had to go there for George's birth.
Then it's "One of us gets to go, the other will have to drive". Chris makes some phone calls, then they say "no one gets to go just her". "We need to put her under now and send her off". We continuously are talking her through this, I introduce everyone who is touching her and tubing her and poking her. "This is Amber she is a nurse, she went to school for a very long time..." "This is Dr. M... he is a doctor of medicine he went to a school for a very long time to learn all about blah blah blah" Talking her through it not only kept her calmer, it kept me calmer, and it made the nurses and doctors realize they are dealing with a four year old. I kept asking what was going in, what was coming out, who are you, what are you doing, what are you thinking this is....
Finally, we say we love you and you are going to sleep for a little bit and then going to the hospital. They put her under and intubate her. She is then put on a stretcher, strapped up, and headed off on her first helicopter ride ever. Chris and I gather our belongings, walk outside and fall apart. We just held each other. I think Chris said "we can't lose her" and I said "I am so scared and so sorry".
We drag ourselves to the van. Roll down the windows, pray, and watch our first baby life flighted an hour away from us. This is the second time we have had to leave her. The first was when we had George almost two years ago.
We go visit our other baby George, he is soft and squishy and running around in a light blue set of soft cotton pajamas at our friend Tori's house. He smells so sweet and toddler like. Tori makes us some food for the road: peanut butter and jelly's, apples, and grapes, she makes us drink water and I nurse George and then we go to our house pack one night's clothes, a brush for Ainsley's bed head, and an outfit to take her home in.
Arriving at the hospital our baby is still intubated and getting her hair french braided by the nurses. She is hooked up to multiple machines that are beeping, and breathing, and squawking at me. The doctor has us explain our story, "tell me what happened" she says. I tell her from the tail bone fall to now. She tells us in the most calm warm voice that our little girl is "very sick". Her "symptoms point to leukemia but they are not certain until they can do more testing". She tells us the reasons why and then tells us she also has infections going on and multiple other things. We are keeping her intubated and sedated until her body gets better.
After paperwork and questions we walk outside and again, BREAK DOWN. No parent wants to hear the words "your daughter may have leukemia". But here we were. I've heard it twice now. Here we were> Parents that have a daughter that may have leukemia. Flashback, Back when I was 21, I volunteered with Arkansas' Camp Quality, a camp for kids with cancer and their siblings. I had a camper, Natalie Jones, who had ALL. And I said to myself back then, if I ever have a sick kid or a kid with cancer I hope they get this one because it's so treatable. NOW I am here. A 34 year old mother wishing I could trade places with my baby and let her be a kid, sing songs, run and jump and not worry about blood counts and urine and germs and cancer. FUCK CANCER. Can't this just be a weird ass virus or something that my breastmilk can take out?
August 10th: We got some more blood work done, they found some leukemia looking cells but needed more proof. Oncology talked to us. That is when I knew we were really dealing with it. CANCER, this could be CANCER. ONCOLOGY is here to see you.
Gerson therapy doesn't work with acute leukemia.... I pray she has something that we can treat calmly and with natural remedies. Please let it be a different cancer so we can be testimonies to Max Gerson's amazing therapies.
They tell us, it's probably acute leukemia.
We discuss chemo. We like the doctors and nurses here. Our insurance will cover most of the meds and procedures. We decide IF IT IS Cancer...we will stay at Children's hospital, unless something more drastic happens.
I miss George. He has NEVER been away from us this long. The longest was 10 hours while I took some grad school classes. I pump milk for him. I miss my babies. I miss sleeping with my babies kicking me in the head.
We will have to close my in-home business. I cry. My dream of finishing my Masters Degree and building a Montessori school in Stillwater will need to be put on hold. We will lose three years of supplemental income. And incur traveling and hotels and food and organic stuff to make her better... my mind is going nuts. How are we going to afford this.
Sunday, August 11th we got the confirmation. The flow cytometry results of her blood work confirmed precursor b acute lymphoblastic leukemia.
And we hear that word again.
CANCER
LEUKEMIA
And we pray.
-Andrea
Ainsley & George swinging at the park
Katie doing my hair and Ainsley chilling on the couch
Hand Bruises show up on Friday morning, palms only
Ankles swell and bruising shows up on Friday morning
OKC Children's Hospital atrium
We get a visit from George!
More infections and viruses found so now we have to wear masks and gowns for her protection and other kids in hospital.
We sleep in the pull out chair and floor for the first two days.
Ronald McDonald House provides us with a sleeping room for three nights! FREE of charge. And it's two floors down from Ms. A
Pictures from a few of Ainsley's Allies cheering her on.
8/17/13 sweet baby Ainsley, receiving a dose of PEG, pegasparagenase a form of chemotherapy.
As I type this a group of 30 people are at our home doing yard work outside and planning some renovations on the house.
This is truly unbelievable. We are so grateful. I have a feeling we won't recognize the place when we get home.
Thanks to Jim Bruer and Bryson Baker for the photos.
Ainsley has made some more improvements today. They have taken her off the dialysis machine right now to let her kidneys try to get better at doing their job. They are pausing the chemo right now so her kidneys get a break.
We are hoping she improves enough to get her breathing tube removed. Her sedation is light so sometimes she briefly wakes up and tries to get it out. We calm her back down and she goes back to sleep. Getting the tube out would be huge but they need a little more fluid that's built up around her lungs to be gone. So pray for Pee!
As you probably know our 4 year old daughter Ainsley has been diagnosed with Precursor B- Acute Lymphoblastic Leukemia or for short, ALL. You can learn more about ALL here: http://www.lls.org/diseaseinformation/leukemia/acutelymphoblasticleukemia/
Yeah, bad news. But the good news is 90+ percent of children under 5 will survive and most live on to have happy "normal" lives once the 2-3 years of chemotherapy is done.
Now I know my little girl is anything but "normal". She is a life changer.
I wanted a real website to collect all of the information, resources and ideas that have been going on. Facebook has been HUGE for us it's a great way to keep in touch with everyone. We have group and private conversations going while we are here in a quiet hospital room with Ainsley. But, everything we put there is ultimately not ours and not under our control. And I really want Ainsley and her little brother George to be able to go back and read this story. We want them to read about all the amazing friends and family who have come together for her and us. This testimony of God is just beginning.
Welcome to Team Peters.