Light the Night Eve

I cannot believe our big day is tomorrow. I am nervous, excited, emotional, scattered, you name it. Tonight I spent some time with Kate, my old college roommate from Miami, and her husband Matt. They travelled six hours to be here for our girl Ally. My other college roommates are also coming in...2 from Michigan, and 1 from Wisconsin. I have met a lot of wonderful friends in my life, and most of them will be marching right behind us tomorrow night. I am lucky.

So I will see everyone tomorrow night. I did forget to mention last night, but they are going to have a booth set up to do bone marrow screenings. This is not hard! I think they basically swab the inside of your mouth with a q-tip and send it away for DNA work. I would really appreciate if anyone would be willing to do this. I am not sure if Ally will have to go the bone marrow transplant route, but it is always a possibility and I would like to be prepared if at all possible. You never know if you could be a match for Ally, or even some other child in need. One of the fellow families from the hospital, Lincoln (the one who shared the Lemonade Stand profits with Ally) has just relapsed back into his leukemia. He is only 9 months old. Please keep him in your prayers and also look for them to be walking tomorrow night. He will be in the hospital with Ally getting chemo on Friday.

So you heard it right, Ally has passed her "ANC count" and will have her port accessed at 3:30 tomorrow afternoon. Just in time to head over to the walk. When she arrives back home, we will hook her back pack of fluids up to her port and have another night of no sleeping! She is admitted on Friday morning for three to four days of more chemo.

We have made some further progress on getting those MRD results from Johns Hopkins. One of Ally's doctors is going to try to call and get the info for us. We also found out that the test Miami Valley did a couple weeks back is now more detailed than the one they ran back in June. And they still found zero leukemia cells. So I think that is a very good thing. I just keep staying on top of everybody until I get her results. Just as is the case with almost everything, it is true that you have to fight sometimes even for your own healthcare. And I am always willing to take on that challenge.

See you at the walk!!! If anyone is willing to take some cool pictures and send them to me, I would be very appreciative!

Walk Details

Ally continues to do well. I am pretty much holding my breath and hoping that no one gets sick for our big day on Thursday. This is just a huge event for my family and I have come across a few people here lately that are sick and it sends me into a panic! Even more than that, my son Evan decided to throw up last night at 2am. I was really panicking! But that was all he did and then he turned out to be fine all day today..just another flukey thing. We had started to discuss operation "get ally out of the house" which will be our plan whenever someone in the household gets sick, but then it turned out unnecessary. I just want us all to remain well until Thursday night and the weather also looks good!


As far as the walk, I posted a lot of details back a few days ago...so you can page back to look at everything. But basically....we will have a tent set up with a banner that says Ally's Army (we are big enough to get our own tent!!) Instead of going to the normal registration area, you can just come directly to Ally's Army tent. They told me our tent will be close to the stage. Most of my walkers are pre-registered, which is awesome. You can turn in any extra funds raised that night too. I know I have a batch of checks sitting here to turn in which is going to put us over the $32,000 mark. I can't believe it!! I am wondering if we will be the highest group!


At the tent, you can pick up your balloons and/or Light the Night t-shirts depending on how much money you raised. BUT, don't forget to wear your Ally's Army t-shirts! Actually, due to a small miscommunication with our supplier, we have an extra 60 or so shirts that I will have at the tent the night of the walk. They are mostly size adult medium, but look pretty roomy. I may have a few extra of other sizes too. We will also have some of the hats there if you want to get one.


I am not sure what time to tell you to get there, but obviously all 400 of us can't get there right at the same time. I will be there starting at 5pm and I will take any help I can get in the tent. I want to say something right away.....I wish I could talk to each and every one of you that are coming. Honestly, there are quite a few names out there of people that I do not even know. So if you see me around, just say hi and tell me who you are, etc. I really wish I could talk to every single one of you in detail, but it is going to be like our wedding (times two!) and I just know it won't be possible. How can I even begin to thank everyone? Hopefully you all know how grateful Jerad, Ally and I are for you coming. It is going to be a beautiful event and will mean so much to all of us.

The address for the event is 695 Lincoln Park Blvd. The Fraze Pavilion in Kettering Ohio.

I am just praying that the Barnett five stay well here for two more days. We are heading to the clinic tomorrow afternoon to see if Ally passes her ANC test and can continue on with chemotherapy/inpatient hospital time starting Friday. She may actually even have her backpack of fluid with her at the walk. We will see.


Thanks again and safe travels to everyone for Thursday.

A day in the life

So people always ask me stuff like what do I do in my free time? To which I usually start laughing and/or crying because mothers of kids with cancer just don't have much free time. I have learned to accept this, and I usually devote my "free time" to doing something that will make one or all of my kids happy. This stems from my perpetual guilt because mothers (who invented guilt) have found more ways to punish themselves than any other species on earth. It is fine and I accept that this is my path now and for the next two years. I do sometimes daydream about what life will be like when this is all behind us. We will all be stronger, wiser, more grateful, and will focus more on what is important in life. I have even heard some people go as far as saying cancer is a gift....because it takes something like it to open people's eyes in the world. Mostly I daydream about the possibility of watching something on TV or reading a book or some other normalcy.

I am, however, reading a book that another "leukemia" Mom gave me. When I read now, it is normally in the form of some sort of research on medications, etc...something that will provide me some knowledge on how to get my family through this disaster and land on our own two feet. The book is by Erma Bombeck, who was actually from Dayton, and is called "I want to grow hair, I want to grow up, I want to go to Boise...Children Surviving Cancer" And I have found that there is some humor in a serious topic like Cancer, albeit just a little. But we can't just sit and cry all the time, so we might as well laugh at some of it. Right? Hey, that sounded like Jerad, didn't it? Anyway, there is an excerpt in the book that I will share today and cheat on my blog while someone else does the writing. Mostly, again, because I want to remember it...I will paraphrase a bit.

What's a Mother For?
Wanted: Woman to raise, educate, and entertain child for minimum of twenty years. Be prepared to eat egg if the yolk breaks, receive anything in hand that child spits out, and take knots out of wet shoestrings with teeth. Seven days a week, twenty-four hours a day, including holidays.

If the job description included mothers of kids with cancer you would have to add: An additional forty hours a week set aside for reading magazines in doctor's waiting room, chauffeuring child to and from treatments and therapy, standing in line to get prescriptions filled, and running errands. Sustaining guilt for not giving enough to other members of the family. Major worrying twenty-four hours a day. Must possess maturity to realize that you can't "Kiss cancer and make it well"

I just thought this was very telling and also funny in its own way. So I shared it. I do think that once we get through with this Light the Night Walk, I am going to have more time on my hands. I didn't know it was going to take so much time to be the team captain, but it is all worth it because I believe we are going to raise $30,000! I originally thought we could raise about $3,000 and now we have done 10 times that. And it is not because of anything I have done, it is because of all of you stepping up to the plate and helping out.

The forecast for Thursday is looking good. I am getting nervous about it but can't wait to see everybody. The kids are counting the hours....it is all we have talked about around here for months! See you there. Also praying that Ally stays well and no fevers or anything develop. As it stands now, she is due back into the hospital Friday morning, but Thursday is still free....

Thanks to all.

Amazing Weekend

And so it goes, that every time we have a Friday off it is just never meant to be. I called in to the clinic on Friday morning to hear Ally's blood counts. They started by telling me her ANC was 1160. The highest I have seen in, well, forever. This meant that her white blood cells were still high and she could also go to indoor places because she had some immunity built up. Woo Hoo. But at the same time her hemoglobin number was low (7.7). So with the weekend coming up, they did not want her to turn symptomatic. Thus, a visit to the clinic to get blood was how we spent our Friday afternoon. She was at school and had no idea. Our good friend, Nicki Winger, was going to school anyway so after a crash medical course on putting on Emla creme she handled getting it on Ally. Then, Jerad picked her up from school at 12:30 and off they went to get the blood. She did fine and it usually perks her right up.

The good news for Ally was the ANC number was high and she has been really wanting to see that movie "Cloudy with a Chance of Meatballs" I swear she has been talking about it all summer, but it really just came out last week. We took her friends Madison and Joshua (even though they had already seen it, she really wanted her buddies there). Ally and I were home alone this weekend as Jerad took the other two kids to Junction City to see his family and go to the '80's dance fundraiser on Saturday night. (he will post on that coming up) I really enjoyed having 24 hours with just Ally and I. I spend time with the other two kids individually, but the time I normally spend with Ally by herself is in the hospital. Not much fun. I learned that she is really getting to be a grown up girl. In two weeks she will be 8. She has always been mature for her age....don't know why, but she has. Well now she seems like she is about 14, but not in a dramatic teenager giving-me-attitude sort of way, but in a nice wholesome grown up way. The poor girl has been forced to grow up very fast and is always dealing with things that she doesn't want to do! I do feel like we are friends now. Yesterday, we saw the movie, went to a birthday party for my nephew Mason, watched a nature show and cuddled in her bed together. Today we got up and had breakfast together (she even cooked her eggs herself!), got ready for church, went to church (another first), went to The Cheesecake Factory for lunch, and then spent a couple hours shopping together. We haven't shopped or done anything like that in a very long time. As we were walking around, she kept grabbing my hand and holding it. It was so cute. I know it seems like we did a lot, and we did! We just have to cram it all in because I never even know when her ANC will be that high again. As a result, I am tired, my house became a mess, things didn't get done that were supposed to, and I will be starting off my week "behind" in everything. I do hate that, but I will just live on the memories that we made this weekend together and not worry about the fact that I have to climb into an unmade bed tonight. Wah wah.

Checking out the movie in 3-D!
That is it from my front, but Jerad has an amazing story about a devoted group of small town friends who came together Saturday night on behalf of Ally. Man, I keep thinking about how this whole past few months should be made into one of those feel-good movies about how good humanity is and how communities of people love and support each other. Or how we could be one of those stories on Extreme Home Makeover, well minus the house of course, but how hundreds of people just dropped everything to help a local family in need. Sometimes I have to wake myself up and say...yea, that's my family. And everyone is willing to help us...and how great is our God that he is providing this amazing support system of Ally's Army that is carrying my family through this. Well, anyway, I will get off my soapbox now and drumroll.....................here's Jerad.

"There are things about growing up in a small town that you can't necessarily quantify."

That pretty much sums up the 80's themed fundraiser that several of my high school friends put together this weekend. I truly can't quantify or put into words how amazing it was. One word kept coming to mind, and that was overwhelming. But I also kept thinking all night long about my small town, Junction City. I've always loved telling people that I grew up in a town with no stop light, where I was related to half the town, where my Grandpa Harry and now Uncle Lou own the grocery store, my Great Aunt Margie ran the post office, and my Great Uncle Fred and now Cousin Tim own the hardware store. And last night reminded me of why I loved it. Familiar faces everywhere, even though it may have been 10 or 20 years it never feels that way. Everyone was sharing stories with me, remembering how I used to bag their groceries (paper only back then, the good 'ol days), how they used to babysit me (I think I had at least 3 former sitters there last night!), how we use to hang out after elementary school, how we use to dress in junior high (parachute pants, more on that later) and where we used to hangout in high school (yes there were cornfields and oil wells involved). It's that slice of Americana that you take for granted when you live in it every day, but when you are away from it you can't help but appreciate it.

Now for the details of the bash...let's start with the funds raised...(insert drumroll as always)...$6,206!! I don't know what the expectation was, but I have to think that we knocked whatever it was out of the park! I am still in disbelief as I type that number, especially since it is the second time in less than a week as we raised almost the identical amount at our poker fundraiser. Much like the poker event, not only did we raise A LOT of money that will go towards our Walk and ultimately to help research and fight Leukemia, but we had an absolute blast doing it.

And speaking of blast, the event was entitled "Blast from the Past to Help Change the Future". For a little background for those that don't know, this whole event was the brainchild of several of my high school friends who wanted to do something for Ally. And as much as I love these girls and wish I had stayed in touch better, I really haven't. But they heard about Ally, have been loyally following on the blog, and just wanted to do something for our little girl. I sound like a broken record, but it is touching to see people take so much time out of their lives to help Ally and to help fight Leukemia. So thank you to Sheri, Jen, Tammy, Jane, Nikki, Billy, Cindy, Craig, and Todd and anyone else whose efforts went into throwing a great party and raising a ton of money. I can't tell you how much I appreciate what you did for me and for my family.

Of course, not only did my classmates donate their time and money to do a great job with the planning and decorations and the like, but many others took it upon themselves to donate auction items for a silent and live auction, food for everyone to eat, music for everyone to remember the 80's - free thanks to old friends Travis and Sonja Saffell, and a free facility thanks to the kindness of the American Legion who not only let us use it for free but also donated $500 to our cause! The auction items just amazed me. As people found out about the event, they volunteered to donate item after item. I can't name them all, but a thousand thank you's to those that donated items because the auctions raised a large portion of the funds. Special thanks to my cousin Gary Poling who donated 2 large items that raked in $1,000 in the live auction, and to his brother Larry for spending $500 on one of them! We also had my cousin Jon Clark donate back the 50/50 winnings which had to be another $400-$500. And we even had support from the New Lex Class of 1964 who was celebrating their 45th reunion. My Uncle Bill and Aunt Joyce had to attend their reunion first, but then came later and presented an envelope with $430 that was raised at their dinner. I'm sure most of those folks didn't even know who Ally was, but they still felt compelled (or pressured if you know my Uncle Bill!) to give to our cause. One final thank you to my brother-in-law Bunk for bravely watching Evan & Carly and 4 other kids so that we could all go to the party. Everywhere I turned around, someone was giving their time, their prayers and their dollars to help Ally win the fight against Leukemia.

All in all it was a fantastic event and kickoff to the week of our Light the Night Walk. I can't wait for Thursday night and get chills thinking about our army of 350 walking to support our Ally and her fight. I have to believe we'll get close to $30,000 after having an initial goal of $10,000, and I can't think of anything else to say other than...THANK YOU!!!

And now for those costumes, I know everyone is dying to see the ultra-tight parachute pants. For those that had the over/under on whether they would split open or not, they survived! I just had to walk like a penguin all night. The outfits were great and I'm glad to see more than just a few of us got into it...

The WINNERS (best man, woman, man's hair, woman's hair and couple)

My lovely Class of '90 gals who put all this together

My brother Brad (aka Maverick or Goose) and my sisters Jessica and Tara. Always there even when they have to be in Columbus at 6:30 a.m. for a Sprint Triathlon or Relay for Life Walk!

Another Class of '90 group picture

All of the auction prizes donated

My Uncle Bill presenting the Class of 1964 Donation and the American Legion check

My parents, always proud no matter what I'm wearing

Ally has had a fairly good day. I can tell her legs are really bothering her though. The leg/hip pain is a pretty severe. I have also noticed that both of her big toes are pointing inward now. Pretty noticeably. I am going to talk to the doctor about that. She went and gave a blood sample today so we will see what her ANC and other levels are tomorrow. I am hoping she does not need any blood products. I am thankful to have a Friday without treatment, but I realize that we paid for it last week with four days in the hospital.

I have to say I love the staff at the Beavercreek testing center. They see us walk in the door, don't even make us register, take her right back to the room and do her test. Even though other people were waiting. They want her in these facilities as little as possible, because a lot of sick and germy people are in there getting tested for flu, etc. SO I really really appreciate that they make her time in the germ zone as quick as possible. And we also love our kind blood drawer there named Mona. Both of my girls love her.

This is a quick post. Mommy and Daddy Barnett are quite tired. Ally is still getting up a lot at night and then we also tend to spend every minute at home trying to get something productive done before we are confined to the hospital again. We rarely get to bed before midnight and rise at 6:30 every day. After a while it just wears on us.

Thanks again to everyone who is walking, volunteering to help, donating, you name it. We are really making an IMPACT and isn't that what life is all about?

Happy Wednesday

Ally is doing fairly well, although she does appear to be suffering from some side effects. Today she had some pretty severe leg and hip pain. This is a side effect of the Vincristin chemotherapy. I think because she didn't get any chemo for a while, it seems to be hitting her a little more right now. She is also definitely eating more which is a result of the Megace appetite stimulant. However we had another episode today where she threw up immediately following dinner. She had macaroni after school at her friends house...and from the looks of things I think she might have eaten too much! That combined with her dinner and Jerad and I are just thinking that maybe she is eating too much at one time right now. Her body just isn't used to it. And sorry if that is too much information.

Secondly, we did go over the $20,000 mark today on our fundraising. I spoke to my contact at the Leukemia Society this morning and I think she was truly shocked when I told her about the $6000 from the Poker Tournament. I have been meaning to mention on here too...but that Tastefully Simple party that we had in our neighborhood a few weeks back ended up raising $640 also. That was just way more than I ever thought it would be. Thank you to Judy and Denton Brower.

They told me that the largest team to ever walk in Dayton was 100 people. Right now we are looking at an unprecedented 350 people for Ally's Army....and with a hefty amount of dollars to back us. I am so proud of everything we have come together to do...and all of this while Ally is still going through intense treatment. It does take a lot of my time, but it is so worth it. It just shows that everybody can (and HAS) made a difference and turned something that can be so bad into something good. One more housekeeping note.....since we have raised $20k, everyone on the team will be carrying a balloon...no need to worry about that whole $25 fundraised to get one. We do have a ton of people that have raised over $100 and will also be receiving t-shirts and other incentives. She is also going to have a 10x10 tent set up just for Ally's Army. We will get a sign out there and it can be a meeting point for all of us. Some of you that have volunteered to help (thank you) can maybe help run our tent, pass the things out, etc. Don't forget there is free food, things for the kids to do, etc. Now we just have to get some good weather.

Finally, Jerad wanted me to post a little teaser about the outfit he will be wearing to the 80's dance in Junction City Saturday night to raise even more money for Leukemia. The pants are a little tight, so I am hoping he doesn't bust out any of his Billie Jean Michael Jackson moves. But you have to agree....these parachute pants are SWEEEEEEEEEET. Hope you can make it out to see them in person.

Poker Tournament

To blogging friends....I am going to do a quick start to the post, but again we have a guest poster....the one, the only, Ally's Daddy. He went to a great fundraiser last night and would like to share the details. Ally had another fairly good day today. She started the day with some belly pain and missed the bus because of some crying. I ended up taking her to school though and she did fine. She seems happy and is eating more. The scale tonight was up maybe a little. Thanks to everyone who tries to stuff calories into her (Suzy, Julie).

Poor Evan had his doctor's appointment with four shots today. He was not happy, but when it was all over he said it went "better" than he thought. We have a super sweet nurse friend there named Delilah and everyone at Primed seems to care about our family so much. Because of a fear of a flu shot shortage, which would not be good for my family this year, I had to turn around and take Carly in for her flu shot. I am really tired of all my kids getting poked (plus Jerad and I on Monday) but praying that everyone stays fairly well this fall and winter when it will be crucial to keep the germs away from Ally!

One quick note...we received a package from Warsaw, Poland yesterday! It had all kinds of crazy postage, etc on the package. I did not know who it was from, but it was a cute authentic Polish hat for our girl Ally. It turns out my friend Bonnie (we worked together at P&G) had another one of her P&G colleagues from Poland find the hat for Ally. Here she is trying on her very unique hat, complete with a feather in it! Thanks Bonnie!

Dad's turn now...I just wanted to say a little about a great Texas Hold 'Em Poker fundraiser that we had last night for Ally & the Walk. I'm not sure who's original idea it was, but Larry Booher Jr. and Tom Suttmiller took it upon themselves to completely organize and run what I thought was a fantastic tournament all in the name of our sweet Ally. I don't think either have ever organized anything like this, but you wouldn't have known it from the player's perspective. Everything went off without a hitch and about 50 of us took to it at 7:00 p.m. with the last man, or should I say woman, standing at 10:30 p.m. And the winner is...(drumroll)...Kim Westendorf, our plumber Ken Westendorf's daughter. Yes, that's right. 49 guys and 1 woman and she won the tournament! I told Kim that if she had the guts to play poker with 49 guys and be the only woman, then she was too good for us. She of course had to prove me right.

I'll get more to the poker, but the most touching part of the evening was that through a few emails and word of mouth, 50 people paid a pretty hefty $100 to play and $50 to re-buy knowing that 80% of all the proceeds were going to charity. We had friends, neighbors, co-workers, many of our subcontractors, Walnut Grove friends, and relatives of friends/co-workers/subs, and many of these folks don't know Ally directly but wanted to come out and show their support and it was VERY much appreciated. And the 80% became 100% because ALL of the winners donated back their winnings. I really was not expecting that, especially since we were already taking 80%, and it just shows how giving people are and how much they care about Ally and fighting Leukemia.

And there's more, Larry's Mom Pam and two of her sisters (Chic & Leah) cooked a SMORGASBORD of food for us. 50 people and there were still plenty of leftovers, and they stayed for most of the evening to help serve. Not only did it allow us to save money on having something prepared, but they donated the food as well so even more of our proceeds could go towards the Walk. And then there's our good friend Frank Detmer who doesn't play cards so he PAID the $100 just so he could watch and tend bar! Every time Janel and I turn around, people are giving beyond what we could ever have expected. I wanted to say a few words to thank everyone, but sometimes it's a little overwhelming and gets me too emotional so I let Tom take care of it. But for those who participated in any way last night, THANK YOU!

Now to the poker. I absolutely loved the tournament style. As I said before, it was very organized. The betting increased every 20 minutes (on the nose thanks to Tom's egg timer!), and it got more intense and took more and more strategizing as the night went on. There were several "Degree All-In Moments" (especially at my table, probably not a coincidence) so of course Mr. Competitive (me) loved it. But the funny part was that with 50 "guys" (hey, she won the darn thing so she's one of the guys now) competing to win, I never heard one complaint. I was picturing lots of questions or some confusion, but nothing. I think everyone genuinely had a great time and when it was over had nothing but kudos for the hosts. In fact, 6 of us were so fired up we had to play more and ended up going until about 1:00 a.m.! Suffice it to say Tom & Larry did a great job and I sure hope this becomes an annual event.

And now for the big news. We raised...drumroll again...$6,440 !!! Even as I'm typing it, I can't believe we raised that much money. We are now over $20,000, more than twice our goal, and we still have some events to go! Thanks again to all those who worked so hard for this event, but also to all those who played and not only donated their money but also took an evening out of their busy schedule to support our daughter.