Wednesday, September 30, 2009
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!
Tuesday, September 29, 2009
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.
Monday, September 28, 2009
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.
Sunday, September 27, 2009
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.
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.
Thursday, September 24, 2009
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?
Wednesday, September 23, 2009
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.
Tuesday, September 22, 2009
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.
Monday, September 21, 2009
Anyway, the day turned out fairly well. She did stay home from school. I wasn't comfortable with sending her since she hadn't even been home from the hospital for 24 hours and had this new chemo running through her. I think we will try for school tomorrow and then the doc says this chemo will actually hit her later in the week..like Friday/Saturday. The good news is that she is eating more. No where near the 3000 calories that they want her to get, but I think the stimulant is helping some. She also had to go to the office with me today so that I could get my flu shot. Well she just loved watching everyone else get a shot (me, her Dad, her Pa, Mrs. Booher, Aunt Melissa, Bamm Bamm...she saw a lot of them) Everyone except for her! She said "usually 15 people are watching me get a shot, but today I get to watch 15 people get a shot instead" Nice. She is not allowed to get the flu shot this year. Poor Evan has to get his Kindergarten shots tomorrow and a flu shot. I am dreading that one a lot. Thinking of using the Emla cream on him. He has to get some perks, right?
Another friend of mine, Jenny Robbins (and her lovely Mom who is a faithful follower of the blog...thank you Judy) are having another fundraiser for Ally. This one is an online Pampered Chef order where 25% of the proceeds go towards Ally. Here is how you do it:
click on “Order Products” (lower left corner box)
Enter (First name) Judy 4 Ally (Last name) WIck
And shop! 25% of your order will benefit Ally!
Questions? Call our Consultant, Pat Lavy 937-773-9472
Also, I wanted to share some details for the Light the Night Walk on October 1. It is rapidly approaching. A few people mentioned dogs, so remember NO DOGS. This information is coming from my contact at the society Lisa Beam. That poor woman gets numerous emails from me everyday as I try to coordinate our (SUPER LARGE AWESOME) team. Anyway, here is some info:
Parking is available in the City of Kettering Government Center lot at the corner of Shroyer Road and Lincoln Park Blvd, at Christ United Methodist Church on the other corner of Shroyer Road and Lincoln Park Blvd, or across Shroyer Road at Fairmont High School. If you park in one of these lots and walk toward the Fraze Pavilion, you will see the registration area.
Registration- 5:00pm registration opens
Registration is located on the west end of the Fraze Commons area (Shroyer Road end) Please stop by and turn in your team captain envelopes so we can give you your balloon tickets and t-shirt incentive tickets. (I am going to try to preregister our team and get some people to help me pass out tickets/balloons, etc)
Red balloons are for supporter, white are for survivor, and each team can get one gold balloon in remembrance of someone who has lost their battle. Fundraisers who raise $25.00 or more will get a balloon. It is recommended that after you check in you get your balloon and tie it on your wrist to avoid lines at the balloon tent just prior to the start of the walk.
T-shirts will be available for redemption for participants who have raised $100 or more. Those who qualify for other incentives will be notified following the walk how to redeem their prizes. For a list of incentive levels you can log onto (we have quite a few people who have earned incentives..)
Food- free food and drinks available courtesy of local food vendors and sponsors
Kids Korner- games, crafts, clown and other surprises for the kids!
Entertainment- Nancy Wilson and Steve Kerrigan form K-99.1 FM will be playing music
Photographer- available to take “Team Photos”
7:00pm- Walk “Program” begins
7:30pm- Walk begins (2 mile route)
8:30pm- Walk concludes
Bone Marrow Screening
Representatives from the Community Blood Center and Be the Match will be at the walk. CBC would like to take pictures of patients who have benefited from their services as well as document their stories. BTM will be doing DNA swabbing for those interested in getting on the Bone Marrow Registry to be a potential donor. Make sure you stop by and visit with them.
No pets are allowed at this walk venue
We walk rain or shine!
Sunday, September 20, 2009
So she spent her last night in the hospital having another movie night (well it was a new episode of iCarly) We also had a donut test taste amongst the kids (her friend Joshua came to visit) What do you do when you can't get your child to eat? A taste test, of course.
We continue to try to get our girl to eat. They actually prescribed an appetite stimulant for her (she has lost 18 pounds). It should take effect in another day or two. My Dad made her a steak and baked potato dinner tonight. She loved it and ate a lot. But then she literally stood up from the table and threw it all back up. Ugh. How can I keep her nourished with these side effects?
Ally is not feeling so well. She spent most of the time at home laying around today. You can tell she is beat. Except for one particular time when she must have gotten a second wind and started helping me with all the chores. Emptied the dishwasher for me. Folded some laundry. What a good girl. But she is tired and her belly hurts again. It is all very reminiscent of the first month or two. Which they told us in the beginning that this phase of treatment would be particularly intense and hard on her. So I guess I knew it was coming, but I hate it. I just hate it. I am guessing she won't be going to school tomorrow unless she makes a big turnaround. I am hoping that she can go a couple days this week. We will see.
Please pray for our sweet girl Ally. She doesn't deserve this and neither do any of the other leukemia children that we spent our weekend with....Aubrey, Ashley, and Dave. Prayers to all of them.
Friday, September 18, 2009
And therein is our bad news................Dr Broxson says that he talked to his contact over there and they are refusing to give us the MRD results for our daughter. Dr B thinks someone must have gotten in trouble at some point for letting that information out. I know. What in the world? They say they do the test strictly for research purposes and not to inform the patients. Again, her protocol would not change as a result of it so they probably think we don't need it. But we would just like to know. Put yourself in the shoes of the parent and tell me how you could not want to know that information? They probably don't like to share the info, because then we might pull of out of the study or something. That is the only reason that I can think of. So of course I think this is horrible. It is our daughter. Her bone marrow. She suffered as they pulled it out of her. I am just really irrate about the whole situation. Not mad at Dr. B. But mad at Johns Hopkins or whatever kind of medical society that would not allow patients the rights to their own information. Sickening. We have been waiting this WHOLE time in hopes that we would get a test back that showed her MRD as undetectable. And now we have no resolution.
So now Dr B is going on vacation. But he says when he gets back he is going to talk to the doctor over at Miami Valley and see if some of their technology has changed. See if their technology is comparable to that which J.H. used. I guess that would give us a little bit more peace of mind. He said we could look for someone that would be willing to do it (not sure how I would go about that), but then poor Ally would have to go through the whole procedure again. Something I would not really want her to do (but would consider it).
I am tired of the unfairness of this whole situation. Kids don't deserve to have to battle cancer. They are supposed to be outside playing on beautiful weekends like this, not laying in the hospital getting pumped full of chemo. I am tired of it. I am tired in general after being up most of the night with Ally last night. I was frustrated and annoyed even before I heard we weren't going to get Ally's information. That just capped it off for me. I feel pretty deflated at this point.
Ally is handling the chemo pretty well so far. Her main complaint today was boredom, but she did have a quite a few visitors and even played games with another leukemia boy named Davey who is 10 and "lives" across the hall. She is down to 61 pounds and they are getting concerned about her weight. They are giving us all kinds of supplements but I know I won't be able to get them in her. She is supposed to take in 3000 calories a day, but likely gets 500. She can't keep going at this pace, so they are putting her on a medication to stimulate her appetite. Her protein stores in her blood are running out and she is getting very low on the BMI scale. I hope this works. We did manage to get her to eat about half of a fairly large steak that my friend Laurie brought for her lunch.
So the boredom led her to the idea that she would like to decorate her Dad and her Grandpa's bald heads with stickers and jewels. They were just lovely. Don't you think?
Also, for all of the people who are coming in from out-of-town for the walk, we have a suggestion for a hotel for you. It is a nice and new hotel and is located in Beavercreek (about 20 minutes from the walk) but it is right next to Jerad's office building. Here is the address:
Hilton Garden Inn
3520 Pentagon Park Blvd
Beavercreek, Ohio, 45431
There are lots of other hotels too, this is just our recommendation.
So far we have people coming from Wisconsin, Illinois, Michigan, West Virginia, California (wow!) and tons of people rolling in from Southeast Ohio. We currently have 300 walkers. And I know there are still people who are not signed up that might even show up that night. The largest group to ever walk in Dayton. Thanks so much!
I will post more information and details on the walk here soon.
Thursday, September 17, 2009
Right before my mom died, she asked me to go find her rosary beads. She hadn't been a practicing catholic since before I was born. I was sort of shocked she asked for them. I said to mom "why do you want your rosary?" and she said..."well don't you think I should start praying?" She knew she was dying and so did I. So I got her the beads and she held onto them...this was just a few days before she died. I kept them in my hands for a long time after she died. And today I kept them in my hands through the whole procedure. They were my great-grandmothers rosary beads. And now they are my treasure.
Ally came out of the meds pretty good. She didn't eat most of the day, but she has been getting a ton of fluids. She got a quick infusion of vincristin (a chemo) and then they started her on the methotrexate about 1pm. It should run until about 1 pm tomorrow. It looks like the biggest bag of mountain dew that you have ever seen. Look:
All of that chemo goes into her body. And it all has to come out too. She is urinating like crazy. Starting tomorrow, when this is done, they start giving her a rescue drug to basically help her blood to build back up. The doctor says she will be allowed to go home when her urine and blood meet their criteria...I think the methotrexate has to be out of her system. We are hoping for Sunday, but it could be Monday. I am already going stir crazy in this place. We did have a few visitors tonight...our Booher family and also Evan, Carly and Grandpa Barnett.
I spent a large part of the day teaching her how to latchhook. Remember that? It seemed that every doctor, nurse, social worker, etc came in and said oh yea, I did that when I was a kid. I guess we were doing a real old school craft. But she loved it. We worked until 930 tonight and then finished up watching the Bee Movie together. I love having time with her in the hospital because I can focus right on her. No other kids, chores, etc to distract me. Just me and her (and Daddy too)and it is very much quality time. She is now sleeping right next to me...and I have a lovely bed tonight on a recliner. (no couch this time)
Oh yea, there are always people visiting the kids here. Fireman, mascots, athletes, etc. We have even had professional wrestlers (they are scary looking). Well today we had the queen of England, a knight, and I am not sure what else. They are actors from the Renaissance Festival. They cast a little spell on her and turned her into a princess right in her hospital bed. But then again, we already know that she is a princess to us.
Wednesday, September 16, 2009
The nurse said some kids go to school with these backpacks of fluid! The are pretty handy. I love technology and I love that it saved us one more night in the hospital. However we are going to be up with her all night going to the bathroom....there is a huge amount of fluid in there.
Tomorrow morning she is admitted at 8am. She will have her bone marrow aspiration and spinal tap sometime in the morning. The sooner the better, especially since she cannot eat or drink before it. Then they will hook her up to 24 hours of a methotrexate drip. We have never had a chemo that takes more than an hour or so. After this highly toxic chemo, they give her a rescue drug and more fluids to pull her out of it. This is about all I know for now, but I am sure I will learn more and post more as we go through it.
Please please keep praying for that undetectable MRD. I saw the first star come out tonight...I was outside right at dusk. I wished upon the star right when I saw it. Well I have wished the same wish 100 times today actually. I just want my sweet Allison to be cured.
Tuesday, September 15, 2009
I sat and watched Ally playing outside with her friends tonight. She was running (RUNNING!) and playing ball. It has been a long time since I have seen that. She also hopped off the school bus today and told me that she did PE today. First time. And they ran and they jumped and I think she was very excited that she was able to participate. I hope it didn't make her nice gym teacher nervous!
Speaking of school, they had a hat day today at Valley. For a donation of 50 cents the kids were able to wear a hat during school. (normally they are not allowed) I saw that there were quite a few Ally's Army hats. And Ally's principal, Mrs. Walk, told me that they raised $300 for the Leukemia Society. Wow....thanks to everybody for coming together for that. They are going to try to do this every quarter. I also heard that the staff are donating half of their "Friday Casual Jeans Money" to the L&L Society.
We went today and got Ally's finger pricked and did the blood draw. I feel almost certain she will hit the 750 ANC number. She didn't even cry this time, just a little whimper. And she has made fast friends at the Beavercreek Testing Center...she is quite attached to the technician named Mona. Today we gave her an Ally's Army bracelet. She might as well be in the Army. I believe the home health nurses will be coming tomorrow to access Ally's port and start her on fluids. The hydration is important before they start the high dose Methotrexate.
Last but not least, tomorrow (Wednesday) is the LAST DAY for t-shirt orders. Place your order now if you want them. We have to cut it off to give the company time to screen them all and get them to you for the walk. I think we have 160 ordered already, so at least half of the walkers will have one. You can order via e-mail through email@example.com.
Monday, September 14, 2009
I need to start some serious prayers going for our girl. If all goes as planned, she will undergo a bone marrow aspiration on Thursday. They will test this bone marrow sample for any minimal residual disease. (MRD) We are hoping and praying with every ounce of energy that we have that her MRD is undetectable. They will send the sample over to Johns Hopkins in Baltimore and we will wait an agonizing week to hear the results. It is not a typical test...it is part of her research study that she is involved in, so our doctor has agreed to call them personally and get a verbal number from them. Regardless of what the number may be, it should not change the treatment plan for Ally. She still has to do 11 months of intense chemo rather than the typical 7. But if it is undetectable we have a higher chance of her not going into relapse and of being cured. This is especially scary for me as they are testing it after she has not had an ounce of chemo in her body in 20 days. God help us. Please pray that her MRD will be ZERO. That one little number could make a world of difference to this family. Undetectable would provide great peace of mind for Janel and Jerad and the rest of our family.
Finally, I am posting a flyer here on another fundraiser being held in Jerad's hometown of Junction City. Jerad's high school friends Sheri Cobler and Jenny Shiplett have been working hard on this and a few other ways of raising money for the Leukemia and Lymphoma Society. I know I have a lot of followers out there in Perry County and we would love to have you stop by the event if at all possible. As long as Ally is doing okay, Jerad is planning on coming home for it. Being able to have a drink and a laugh with Jerad should be reason enough to come...but they are also having a sweet DJ playing some '80's music. Wish I could go too...but I will stay here with Miss Ally.
Thanks to everyone for continued prayers.
Sunday, September 13, 2009
Even with her feeling so good, she still tires out. Her body is still smaller and weaker from everything. She still never wants anything to touch her chest where her port is. So it really surprised me today when she wanted to do this bungee/trampoline thing at the Beavercreek Popcorn Festival today. We had to wait forever, I mean forever, in the heat to do it. Normally I would have said no, but we did it because she wanted to. And then tonight we were up swimming at my Dad's house and she went down the big 38 ft water slide all by herself. Earlier in the summer she had gone down once with her Dad but was putting on the brakes the whole way down. This time she just flew down the slide. I am so thankful that she got to do that before it gets too cold to swim again. I couldn't help but think back to our trip to the Bahamas in May...just days before she was diagnosed. She wouldn't go down the waterslides there, and I didn't know why. I feel so bad about it now. She was really really sick then and I didn't even imagine it was leukemia. Check out this video of her doing the bungee jumping thing....she has some energy now-watch!
We also did some very very normal things like go over to our friends house for pizza on Friday night. We used to do this every Friday, and I don't think I had been over there since Ally got sick. We usually spend every Friday at Children's Hospital instead! We also had a Buckeye party out on our back deck. This is one of our favorite things to do...Jerad moves the flat screen TV out above our fireplace and we cram our deck full of neighbors. I counted it up and we had some or all of the people from 11 houses in our neighborhood. It was fun, but why did OSU have to lose it in the end? Hmph.
Jerad and I also took a little time for ourselves. People at the hospital (and everywhere really) keep reminding us that we need to do little things to de-stress and get away and such. Soooooo....crazy as this sounds....we ran a 5k race together (well, him much faster than me) and then we went out to breakfast. Not your normal date, and we were home by 10:30 am to take Evan to soccer, but we squeezed it in. And got some exercise to boot. Here we are with our friends who did it with us...Larry and Suzanne Booher, my brother in law Gavin, and our personal trainer friend Kevin Manning (behind me). I proudly wore the prototype shirt we had received that says "ALLYS ARMY"
That pretty much sums up our weekend. Pretty much a normal family (although still not taking Ally anywhere indoors). I have one more thing I want to remember....I was sitting in church today with my Dad and my sister. I was just looking around at all the people around me and was surprised to see so many people that I don't even know wearing the Ally's Army bracelets. Orange everywhere. And then they showed a video of the the construction of the new church (our business Synergy is building it) and I see more Ally's Army bracelets in the video. Construction guys were wearing them. All for our little girl. Her spirit is contagious and we will win this battle. How could we not with the power of all these people supporting us? I am so grateful.
Thursday, September 10, 2009
Tuesday 9/15 bloodwork
Wed 9/16 home health to come out and hook her up to fluids to hydrate her
Thur 9/17 Bone Marrow aspiration, spinal tap with chemo, and then hooked up to a 24 hour drip of high dose methotrexate--all inpatient
Fri 9/18-Sun 9/20 Remain in hospital until toxicity numbers drop in her blood/urine.
The whole cycle would then repeat again starting right after her walk on Oct 2. I made them promise that she could be there the night of Oct 1. The schedule is interfering with this huge gala that is happening, partly in honor of my mom. It is at my Dad's house and 450 people are attending. Ally will be in the hospital at this point, but I do think Jerad's family is covering at the hospital that night so that we can go. It also would repeat two other weekends in Oct which includes the weekend of Jerad and I's 13th anniversary and also the weekend of Halloween. I HATE THIS. I guess the schedule is what it is and we will just write this year off.
On a lighter note, here is a picture of Ally and some of her friends doing body tatoos in the front yard. Not the normal things that you see kids painting. But then again, these kids are not living the norm either. (BTW Relentless for a Cure is the leukemia motto)
Also, a little housekeeping on the t-shirts. We had fantastic success today with people getting right on to ordering their Ally's Army t-shirts. 80 shirts have been ordered in 24 hours! Thanks for the quick response. I just wanted to say you can write any checks payable to Janel Barnett..I will pay the bill for the mass order of them. We can't do credit/debit cards. Also, when you email your order in to Nicki, try to tell her who you are or where you live so she knows the best way to get them to you. Even I don't know everybody that is marching. (but almost!)
We also still have Ally's Army hats (posted on the blog earlier) and we just got more youth size Ally's Army bracelets in stock. These can both be purchased by contacting Suzanne Booher at firstname.lastname@example.org
LAST BUT NOT LEAST: Today is the day! I am not sure if you have been keeping tabs on it, but we hit our goal of raising $10,000 for the Leukemia and Lymphoma Society today. I have watched that little bar graph getting closer and closer to goal every day. I do believe we are going to surpass it by a substantial amount. I know of a couple thousand more dollars that will be coming in. And I know a lot of the walkers are personally emailing friends and family right now to support them.
Check it out here:
Wednesday, September 9, 2009
Ally had her bloodwork yesterday to see if her ANC count was high enough to start the next round of chemotherapy. She has been feeling really good lately, so I was expecting it to be high...maybe not quite there yet...but high. Nurse Robbie called me from the clinic this morning and told me that her ANC came in at 70. Holy cow, to me 70 might as well still be zero. It needs to be 750 by tomorrow for her to start up again. So it is looking very doubtful that we will start the next round Friday and we won't be spending our weekend in the hospital. She is going in the morning to get another blood test just to see. Part of the ANC calculation is dependent on the number of segs/bands in her blood. Which she didn't have very many of those, but she did have a lot of "baby" segs/bands called monocytes. So her bone marrow is starting to recover and her body is starting to make these baby cells which will eventually turn into adult cells and cause her ANC to rise. I just don't know if it can all happen in 36 hours. We shall see. The delay makes her feel really really good...after all, there is none of that poisonous chemo going into her body. But it also makes me worry about those little cancer cells starting to reproduce. And with them testing her bone marrow at the inception of this next phase, I would like to keep the chemo going. But it is not my decision and I will accept this fate.
She is just so happy these days. So so happy. Jerad and I were discussing that she may have never been this happy even before she had leukemia! Maybe in her own little way she is appreciating the good times more, just like her parents do. I don't know. It is probably all a figment of my imagination. But the delay weeks are so so good for her spirits (and her parents) She went to her little brothers first EVER soccer game tonight, and even helped do a little goal coaching. Of course, we were very proud of our little boy...and our team is just great. I don't know how, but these little Kindergarteners all seem to know what they are doing already and everything seems very organized. It is probably due to the fourth year clutch coaching team of Jerad Barnett and Kevin Finn. They are super fun coaches and you can probably sense the extreme organization from this picture (keep in mind they are 5!):
Here is the deal. We don't have much time. The walk is three weeks away. My good friend Nicki Winger has offered to manage the logistics behind this. She is going to take your orders and make sure that you get your shirts. If local, we can get them to you or you could pick them up at her house (right by mine) or at our office at 3500 Pentagon Blvd, Beavercreek. If you live a distance away, we can send them to you in the mail. Or if you live near Junction City, we could send them home with Jerad's parents. We don't really have time to worry about exact sizing, etc... but I will tell you that they appear to run pretty true to size.
When you order, please be sure to tell her how many and what size you would like. We will offer:
Youth Medium ($6)
Youth Large ($6)
Adult Medium ($6)
Adult Large ($6)
Adult X-Large ($6)
Adult 2x and Adult 3x ($7)
Because time is of the essence and we need to give the maker time to produce them all...all orders must be placed by midnight on Sept 16th. We should have the shirts about one week later to give to you.
And here is her email address: email@example.com
Let her know how many you would like and how best to get them to you. Also, if the price is too steep and you don't have the cash to cover it, we do have some donated funds to cover it! Just say the word. I want as many shirts out there as possible! Please pass this info on to any "non-blog readers" that you know who may like a shirt too. One week to turn this around. We can do it!
Thanks for helping to make this walk a very special night for Ally and her whole family.
Tuesday, September 8, 2009
Monday, September 7, 2009
Ally really enjoyed the lake. It was so great to see her smiling and happy and almost as if the disease was not there. Her grandparents drove almost three hours and brought her two cousins up for the day. And it was the most beautiful day of weather. We got so lucky! We went to the boat beach. Ally is not allowed to swim in lakes, but no matter. She sat on the boat and worked on a quilt given to her by Grandma Booher. Bella and Madison stayed with her for part of the time. She even got in the water once, but was perched safely on top of Uncle Bubba's raft. Carly cooperated and slept on the boat so we were able to stay out on the lake all day. Ally even drove the boat with Daddy. We had a yummy steak (STEAK for Ally!) dinner together and then Grandma and Grandpa drove the three hours back. Makes me tired to even think about it. I better mention too that the Ally/Madison nail salon was in full effect. Quite a few people on Breezewood Lane had their nails painted! They waited all summer!! Here are some pictures from our day:
Ally did beg us to stay another night. We almost did...but we had a few obligations to get home to. We mainly wanted to attend a fundraiser for Micheal's House...this is a child advocacy center that my family has sponsored and been very involved with. The center mainly helps abused children and is a very noble cause. In fact I was talking to one of the women from the children's hospital who writes grants to get more funding for this center. I had never met her, but she said she reads the blog every day. She told me that this blog has been a real help to her in her work...she now can write the grants with more knowledge about the patient's perspective on things. She told me how the blog has inspired her to write and helped her with the grants. Who knew it could do that? I had no idea. And thus, I have even more reason to keep on writing. If I can help someone...anyone...it is worth it.
Today I am home trying to recover from some serious allergy issues and also trying to get caught up from the week spent in the hospital. Things can build up so quickly around here when we are gone so much. Mail, email, clutter, laundry, dishes, old food...yikes. But Ally is enjoying yet another day with her cousins as she went to Columbus to celebrate Ben's birthday. We were going to have to keep her home...because they were having the party at a sports/game room/putt-putt place (germ central)...but rainy weather forced them to have the party at their home. So we let her go. Another last minute change that we are just gonna roll with. Happy Birthday Sweet Ben.
Plans are to send Ally to school tomorrow. She is saying she wants to go. She also has to make a trip to the blood lab to check that ANC number yet again. I do think it is on the rise, but we shall see. Another "delay" week should have her feeling pretty good. I hope all of the Army is enjoying (or enjoyed) our Labor Day holiday.
Friday, September 4, 2009
Ally arrived home about 5pm. It seems like it takes forever to get out of there and they also had to pump her up with several more antibiotics before leaving. We were so anxious to all be together again. Ally was in really good spirits. We even had dinner together...no matter that it was just pizza. I got my toenails done by the queen nail painter. And the kids seemed quite happy to have a kiss from BOTH of their parents tonight before bed. That hasn't happened since Monday.
She goes back in on Tuesday morning to see if her ANC number has risen...and then again on Thursday. It has to hit 750 for her to start the next round of chemo. If it does, she will again be inpatient in the hospital on Friday...through to about Monday and hopefully not longer. We better enjoy our time together now before that hits again. We plan on trying to make a trip up to our family lakehouse at St Mary's on Saturday. Just staying a day, but we haven't been there all summer. The last time we went was Memorial Day Weekend. Ally was diagnosed 2 days after we got back. My how things can change in the blink of an eye. And then we blinked again, and summer was gone.
I wanted to post a great little story about my friend Erin Cobb who is a photographer from Alabama. She has a following of people (she is a fellow blogger) and she always has people asking her questions but doesn't have much time to answer them. So she did a fundraiser for Ally's Light the Night Walk where she offered to answer three questions for $10. She ended this fundraising initiative on August 31st. You may have noticed a donation into your Light the Night account today. She donated an amazing $800 to the Ally's Army team!!!! That is a lot of questions that she answered and a lot of time that she has invested. All in honor of our girl Ally. Thank you Erin and also thank you to all the people who took her up on her offer. Just another small example of everyone coming together to make a difference.
The Barnett family will be peacefully sleeping in our own beds tonight. Five people under one roof. Hooray.
Thursday, September 3, 2009
Speaking of the hospital, it was a virtual madhouse there today. So many sick kids....overflowing parking..our friend Lara that works there told us that they are already seeing the flu! And people haven't even had their flu shots yet. I guess this never happens this early, so it sends me into more of a panic.
Ally's doctor stopped in around dinnertime and said that she can go home soon if her body starts producing some white blood cells again (and thus her ANC would rise) but also if she starts eating and drinking. She is eating NOTHING and I mean NOTHING. No milkshakes, cookies, candy, nothing. She may have had five bites of something all day. They have discussed giving her an appetite stimulant and it is looking more and more like we are heading that way. I like to stay away from as many meds as possible, but she also needs some nutrition. I am hoping that she gets to go home tomorrow, but we will see. I don't want to be let down. I am tired of being a single parent (either to Ally or to E and C). Jerad and I haven't seen in each other in days except to pass in the hospital for a few moments. He is again taking the night shift. I would just like our family to be together again.
Thanks to everyone for your calls, concern, cards, visits (thank you Pastor Gil and Keli from yesterday) and prayers. We hope to have our girl back on track again here soon. But then probably back in the hospital next Friday the 11th for another inpatient stay.