Thursday, September 30, 2010

Prayers Needed

I am asking for prayers today for my Dad. He will be undergoing surgery starting at 2:45 today at the James Cancer Center at Ohio State. His surgery will be 3-5 hours. While we are walking at the Light the Night Walk, he will be in his surgery. He has a tumor in his face that needs to be removed and the surgery is quite complicated. At this time, we do not know the severity of the tumor. We do not know if it is cancer or not. We can only pray for the best.

I was obviously torn as to what to do, but my Dad's wishes were for me to go to Light the Night and represent our family and our mission of trying to fight against this disease. He asked for prayers and we have a whole army that can do that. So please pray for my Dad. And all others facing cancer/disease.

I am heading to the James in the morning to be with my Dad.

Wednesday, September 29, 2010

Light the Night Walk Logistics

Ally's wonderful Army has exceeded the expectations again! We are currently looking at about 200 walkers to be there behind our girl with the white balloon. I get emotional even writing about it, so hopefully I can hold it together that night. The weather looks absolutely perfect and I am hoping my girl(s) can walk the whole thing. Ally will, not sure if Carly can.

There are quite a few people on the list that I don't know. I am assuming blog readers, etc. But please introduce yourself to me (and Ally) if we don't know you. I would love to meet more of the Army.

We have also raised $16,500. Again, humbled by this amount given that my goal was $10,000. It doesn't matter how much you raise, but I am proud for all those who raised even a little. It is mostly done by small donations from your family and friends and I appreciate everyone's effort.

Here are some logistics for the walk:

LIGHT THE NIGHT LOGISTICS
Parking
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 Kettering Fairmont High School. If you park in one of these lots and walk toward the Fraze Pavilion, you will see the registration area.

Registration- 5:30pm registration opens
We will have our own tent, so look for one labeled Ally's Army. If you have any further donations, we can accept them that night. We should have balloons for everyone and LTN t-shirts until they run out. If you asked me for Ally's Army shirts, they will be at that table with your name on them, too.

Balloons
Red balloons are for supporter, white are for survivor, and each team can carry one gold balloon in remembrance of someone who has lost their battle. 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.

Incentives
T-shirts will be available for redemption for participants who have raised $100 or more and there is a separate shirt for survivors. 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 http://www.lightthenight.org/soh/what/incentives/

Festivities 5:30-7:00pm
Food- complimentary food and drinks available courtesy of local food vendors and sponsors. Quantities are limited and available to all walk participants while supplies last!
Kids Korner- fun and games for the kids and Community Blood Center interactive mobile unit for kids of all ages to enjoy!
Entertainment- provided by "This Side Up"
Photographer- There will be a photographer wandering around to taking photos so take advantage of getting your group together for a "team photo!"

Program
7:00pm- Walk "Program" begins
7:30ish- Walk begins (2 mile route)
8:30pm- Walk concludes

New Route!!
The walk route has changed. Actually, we changed it last year but did not communicate or mark it clearly enough which lead to some confusion. The route will be marked and there will also be maps available at registration.
Bone Marrow Screening
Representatives from Be the Match will be at the walk doing DNA swabbing for those interested in getting on the Bone Marrow Registry to be a potential donor. There is a $25 tissue typing fee for processing.
Reminders
No pets are allowed at this walk venue
We walk rain or shine although the forecast looks good!!!

Sunday, September 26, 2010

Ally's Army In Full Force

What a wonderful weekend we had filled with Ally's Army events. On Saturday, which was the most beautiful fall day here, there was a local group who did a Poker Run in honor of Ally and to raise money to fight leukemia. One of my former co-workers,(from when I worked at Iams Pet Foods) Lori Fultz organized the entire event. I believe they ended up with 36 riders..all wearing Ally's Army Battles Cancer pins...a bunch more were dressed in Ally's Army shirts (in addition to their other cool Harley riding gear). They started and ended at TJ Chumps in Englewood, which is a very cool place by the way...especially when the Buckeyes are playing. They went to five other bars in the middle, collecting their poker hand as they went. Another friend of mine from Iams, Ruthann, was manning a table at one of the stops along the way, but I didn't get to see her! So hello and thanks Ruthann!

The group wanted Ally there to present the prizes and be there when they rode in. I have to say it was super cool when I looked up and saw all these bikes coming in (LOUDLY) with Ally's Army shirts on...a huge bunch of riders, almost all of which we had never met. EXCEPT the leader of the pack!!! Which was Jerad's Uncle Bill, and Ally's great uncle...who drove all the way down from JC...took him 3.5 hours to get here...just to do the poker run. What an awesome show of support from one of my very most loyal blog readers! He brought his friend Steve with him. We were so touched that he chose to do this for us and to lead all the motorcycle riders through the poker run.

There's Uncle Bill, this is when I got the goosebumps all over and the big lump in my throat:
Ally with Uncle Bill and Steve

oh....and Jerad


The most amazing parts for me:

1) This was an entire group of people that had never ever met us (except Lori, and uh Bill). All of these people spent their Saturday and paid into the fundraiser just based on CARING.

2) The people were so genuinely kind and moved by our story. Many sharing stories of their triumphs/battles with cancer. I felt like I made a bunch of new friends that day. I wanted to go buy a Harley and leave with all of them. I am not nearly cool enough though.

3) One couple, and I could be wrong on this, but I believe their names were Wes and Loretta, just saw the flyer with Ally's picture on it at a local bar. They said they fell in love with the picture of Ally and just couldn't get her out of their mind. So, knowing noone at all, they came to ride. Then they invited Ally out to sit on their bike and even gave Ally a very special Marine Corp pin that was his. They couldn't wait to meet her in person....and I loved meeting them too. It reminded me that there really are people like that in this world that will just step outside their own lives to help someone. Touching. Truly touching. Here they are: This is Lori's husband Jim who is tallying up the winners...and loser... (which I believe was him)

Ally was a little shy about announcing everything in front of the bikers (don't blame her)
These were the prizes that were handed out. There were also TONS of gift certificates donated by local restaurants, businesses, even the tatoo parlor. I think every biker got a door prize there were so many.
So, from the bottom of my heart, thank you Lori for a day that I will never forget. And for succesfully raising $780 that we will put towards our Light the Night team walk on Thursday.

On Sunday, we attended the Community Blood Center picnic down at Carillon Park. Ally is one of their featured heros in their annual report. They asked Dad to speak about his fundraising efforts and how all of that has impacted our area....little by little, dollar by dollar, we are chipping away at this beast called cancer. When he was speaking, I remembered not only all the times that my daughter has needed blood, but my MOTHER too. Apparently between the two of them they have used blood and/or platelets about 75 times. WOW. When he told our story, about him getting cancer first, fighting it, then Mom dying, then Ally.... I could look around the tent and see people visibly taken back by the hardships that we have faced. One family....my family...too much bad stuff....but trying to take the lemons that were given to us and make lemonade. We are trying. We are strong. We won't let all of this get the best of us.

There is still time to sign up for one more Community effort. Our Light the Night Walk, which will be held Thursday night at the Fraze Pavilion in Kettering at dusk. (registration 6:00pm) I just checked and with our poker run money we are close to raising $15,000. But this one is not so much about the money, but about walking behind our girl...our inspirational leader...ALLY...and showing her how one little girl can unite so many to stand up against cancer.
Click here to sign up:

http://pages.lightthenight.org/soh/Dayton10/AllysArmy

And thank you to all who are helping Ally's Army to make a difference.


Thursday, September 23, 2010

Events, shirts, etc

I found this press release on the LLS website. I hadn't been able to see it yet. It talks about how Dad is the largest single fundraiser EVER for the MOY campaign. I think that is pretty cool.

http://www.leukemia.org/all_news_detail?news_type=&source_id=7,1&item_id=610534&cat_id=140

Speaking of which, thanks to the Perry County division of Ally's Army, and also many other people on our team who are raising money through friends and family, we are currently at $12,500 raised for the Light the Night Walk. How truly awesome especially in the midst of me telling everyone we could take a break from fundraising for a while. We have a ton of people signed up. If you are not signed up yet, please do so here: (it only takes a minute)

http://pages.lightthenight.org/soh/Dayton10/AllysArmy

I believe we will have an Ally's Army tent at the event where you can check in, get LTN shirts, etc (just for our people!)

Also, I have had some questions about t-shirts. We would love everyone to have an "Ally's Army" shirt on for Thursday night. Here is what I have (limited quantities)

Adult Mediums that say "Ally's Army"

Adult XL and 2XL that say "Ally's Army Battles Cancer"

I have run out of all larges and also all youth sizes. If you would like any of the ones I do have, just shoot me an email at janelbcpa@aol.com. I will see what I can do to get them to you...no charge, they are extra.

Finally, 3 more fundraisers/public events this weekend. Friday night my sister in law is having a jewelry party raising money for Ally's Army. (Thanks Tara.) Saturday is the big Poker Run. I put the flyer up earlier. Click here for details. http://all4ally.blogspot.com/2010/09/couple-of-ally-events.html (Thanks Lori!) Ally will be presenting the prizes on Saturday afternoon and it looks like the weather is going to be perfect. I believe our local radio station (WTUE) has been talking about it. And on Sunday we are attending the Community Blood Center picnic. They have asked Dad to speak and Ally to be example as to why we should all donate blood. We are living proof! Add our Light the Night Walk to the list and we are pretty busy volunteering our free time for a good cause.

Thanks to everyone who is supporting us. Especially all of you who are skipping your kids sports events, practices, lessons, work things, etc to come to Light the Night on Thursday. I know how crazy the schedule can be and it is a blessed night when everyone chooses to come together for our daughter. Thank you!


Tuesday, September 21, 2010

Another month

Another month of steroids are done for Ally. She does a five day pulse of them every month. There is a love/hate relationship with these little pills. Well, more hate than love. The pills are arguably a medical miracle drug for lots of kids and adults. Not just cancer patients either, they use them for lots of things. Amazingly, Dr B told me he could put 3o % of his cancer kids into remission with steroids alone. So I like to hear that. And prednisone, the steroid she takes now, is waaaay easier on her than the Decadron that we took the whole first year. The decadron caused our girl to lose her personality and I HATED that. She also slept terribly while on it. With the prednisone, she sleeps better and she doesn't get withdrawn.

But she does get HUNGRY. Really hungry. She eats about every two hours. Not just snacks..she eats meals and everything. She woke up at 5 am today and was hungry. I do try to keep it healthy...she is not allowed to gorge on chocolate cake or anything crazy. It is so hard because the steroids make her cheeks really round and her belly really round and one of the hardest things is to find clothes that fit her. Just yet another side effect of this disease...we have to shop really carefully. I have listened to countless other "cancer moms" complaining about the same thing...their girls can't find dresses, etc. I just hate it. But we will live with it. As long as our daughter is here and healthy how can we really complain?

On the drive to swim practice the other night, Ally says to me: Mom, will swimming make me skinny? And how was I supposed to answer that??? Yes, I guess it could, but you are taking medicine that will make skinny be very hard for you. The swimming should certainly help matters and her medical team thought it was one of the best things we could do.

Darn steroids. They also make her more likely to break her bones. Something as simple as stubbing her toe could cause a break. We have already had three xrays because of it. And they make her cheeks annoyingly rosy to the point that I check her for fevers every five minutes.

Such is our life. On steroids. For the next year. We'll take it, for better or worse. Anything to keep our girl safe.

Monday, September 20, 2010

Happy Monday.

We have had a good weekend again! I am feeling much better than I did last week at this time and that is good. We have had a few things go our way...glad to get the good news on Ally's spinal...and I felt much more relief after Ally had her swimming practice on Friday night. I was unsure how she would do as she had just had that spinal, chemo, steroids, etc. She did fantastic. I was (AGAIN) so proud of her. She did the entire one hour practice without missing a beat. She did everything the other kids did and most importantly she enjoyed it! This made me happy. I know many parents feel nervousness with their kids about certain things...but my nervousness goes way above and beyond. Another practice tonight....

One of my very best friends, Suzanne, did the half marathon at the Air Force base over the weekend. She wore ORANGE and had her Ally's Army pin on. I am so amazed by her doing this! Congratulations.

We are still waiting to hear more details about Ally's special wish trip...it is coming quickly in a little over two weeks. We have our flights secured already, but waiting on the rest of the info. I will share more as I know it! I may have to put everyone back into the bubble to make sure that we are all healthy for the trip.

Thanks to everyone who has signed up for the Light the Night Walk. We have a big group!

Thursday, September 16, 2010

All is well

First and foremost, all is well with Ally. She had her spinal tap today and we found out an hour later that her spinal fluid was clear of any cancer cells. Thank you God. She did really well through the spinal. She never actually falls asleep, and often she screams. Today she did not scream for us. So that was good. She was, for the first time, acting relatively goofy right after it was done. She was making everyone in the room laugh. She would say "I see you over there Daddy. I see you too Mommy"...just in a goofy voice. They invert her afterwards (head below her feet so the spinal chemo runs to her brain) and she took a pretty good nap.

We did have one unplanned event. She had to get an IVIG infusion this month...she hadn't gotten one in about six months. This is basically something that builds up her immunity (which had tested lower than normal on her today at 300, supposed to be above 600) and with school starting Dr B felt it was important. After 15 minutes into the two hour drip, she started with severe stomach pain and her face got blotchy. She was having a reaction (which has never before happened with this). It was a little scary because it can actually start to hinder her breathing. They clamped her off and paged Dr. B and he came right up. (another first for us) Again, he stressed that he wanted her to have the infusion. So they premedicated her with tylenol, benadryl, and hydrocortisone and slowed down the drip speed. She did alright, but it made for a very long day. Left the house at 745 am and got home close to 7 pm. That is a long day.

I will do anything as long as that spinal fluid remains clear.

I do have to say I have enjoyed not being at the hospital so much. As soon as I went back in and up to the fourth floor, the smells reminded me of many past days that were not so good. It is amazing how it can all come right back to me in an instant. Last fall we spent weeks on end in there. The playground, the cafeteria, the gift shop, all of it was my home. I can't help but cry when I go back. I am not sure if it is tears of joy that I am no longer there or tears of sadness for what I have been through. I truly can't tell, so maybe it is both. I am just so grateful that this Fall is shaping up to be different.

Today, they gave us a date. Her chemotherapy treatment will be over on September 17th, 2011. Exactly one year from tomorrow, Friday. I can't even start a countdown, it would go against my grain. But I can pray pray and pray that that day actually arrives.

Two weeks from today is the Light the Night Walk for Ally. I am trying to get everyone signed up soon, so if you are planning to walk, could you please sign up here. We are most grateful for the LARGE team we have already built (over 100 walkers now).
http://pages.lightthenight.org/soh/Dayton10/AllysArmy

Wednesday, September 15, 2010

Proud.

Ally had her first swim practice tonight. I can honestly say I have never been more proud of her. I was waaaaay more nervous than her. My stomach in knots all day. Here is a girl who has had 16 months of chemotherapy ravaging her body and her muscles and her strength. She is still taking the chemotherapy. And she got in there and swam with the team. She is slow, she is learning, she even cramped up when doing the kickboard and got out upset. But she got right back in and she kept going. I think she probably swam 25 laps tonight. A lot for someone of her strength level. And her three coaches, Chris, Nick, and Rob were super encouraging to her. Just right there with her and pushing her along. I even saw Rob on the side of the pool, which was probably wet, LAYING DOWN in his jeans trying to show Ally how to do a proper flutter kick. They don't have to do this...at all. I am hoping she sticks with it...even if she never gets to a meet, but just to have the exercise and the teamwork, etc. Way to go Ally.

Please be in prayer for our girl Ally on Thursday. She is undergoing a spinal tap. They will check her fluid to make sure it remains clear of leukemic cells and they will give her chemo into her spine. This is a routine and scheduled thing, but it still brings stress to her mother. I will feel much better when it is completed. Our regular days are now interrupted by a day at the hospital, and with it comes apprehension.

Tuesday, September 14, 2010

Wishes Do Come True

We got the call from Eileen at Special Wish this morning:

Ally is going to Hollywood! The Wizards of Waverly Place, a Disney show featuring Selena Gomez, have said Ally can come to the set to see a taping of the show. This will be occuring one month from today on October 14th! There are other parts to the wish...which I have asked to be surprised about for the most part (all of us)....so we will see what our day in Hollywood entails.

We are actually going to be able to go for the better part of a week and also plan to go to Disneyland (Carly loves princesses) and Legoland (Evan and Ally both love Legos). We are still working out the details....I need to get off the blog and start looking at flights/hotels etc...because it is about three weeks away!

This is all courtesy of the Special Wish Foundation, who give all kids with life threatening illnesses the chance to receive a wish. We are very grateful for this opportunity as it is one we could not have given our daughter ourselves.

We decided to tell Ally at dinner tonight. We don't know a whole lot, but we told her she was going to the show, etc. We sat down to a big turkey/mashed potato/biscuit feast for dinner (her request). Under her placemat, I hid the following note that I made up quickly....

She was so excited to learn that her wish would be coming true!!!! After so many days laying in a hospital bed, watching this show, she is now going to the show! She is wearing her Selena Gomez shirt to school tomorrow. We are all thrilled at the opportunity to go on a vacation (Mom and Dad especially, although why didn't I have her ask to meet George Clooney or Bradley Cooper??...just kidding)

I will post more details as I know them. She will be there for her birthday...which is a very cool date 10.10.10 (too bad she is turning nine and not ten!)

WE ARE EXCITED BEYOND WORDS!!!!!! THANK YOU EILEEN AND STEPHANIE FROM SPECIAL WISH!!!!!

Edited this morning with a cameraphone pic.....here she is:

Sunday, September 12, 2010

Community Blood Center





I mentioned a while back that the Community Blood Center used Ally's story in their annual report. I have scanned in the article for you to see. You might have to double click on it and make it bigger to be able to read it. We love blood donors and I believe Ally has surpassed 20 blood transfusions.

BIG NEWS: Ally and Dad are supposed to be in the USA Today on Monday September 13th. TODAY. You should be able to get a paper anywhere in the US! So check it out if you can....

The weekend flew by fast. We were a busy....but it was a good busy doing things like going to festivals, church, sports, and rooting for our favorite football teams. It is such a luxury to do simple things. Everywhere I go, people ask me about Ally and how she is doing. People keep remarking about how good she looks. I was looking out the window tonight and I saw her out in the front yard with the neighbor girls...they were peeking under her hat and she was showing them her hair. They were all smiling. It was super cute.

We are still doing chemo. Every. Single. Day. It is engrained in our routine now. People look at her and forget she is still doing chemo. Well she is. But she is still strong. We were going through the schedule tonight and I told her she has to miss school on Thursday. That doesn't make her very happy, but she takes it stride. I told her she had to get a spinal tap. We will be at the hospital all day on Thursday. We have done tons of spinal taps in our days, but now that it has been three months, well it stings a little more. The worry ramps up a little extra and I really don't want her to have to go through it. I HATE watching them.....I HATE what the drugs do to her when she is in conscious sedation, but it is also saving her life. So we will keep marching forward, trying never to look back, except to appreciate how far that we have come.

That being said, I keep thinking about a family that I don't even know. A little girl from our town, Beavercreek, was diagnosed with ALL just about a month ago. I think she is just slightly older than Ally. Within a day or two, I had four people contact me/tell me about it. Asking if I could help. And yes I can. I am more than willing. I know the family is probably reeling from the diagnosis, the hard levels of chemo, the fear, the hair loss, etc I have yet to speak to them, but I think about them every single day. WHY does this have to keep happening?? I get so mad. So sad. Why do other little girls have to learn to be so strong? Why do other mothers have to watch their children suffer? We will never know why....we just have to keep raising awareness that it is happening. Very little research money is given to pediatric cancer.

September is Pediatric Cancer Awareness month. You won't see the pink ribbons everywhere, like we do for breast cancer. You won't see public service announcements. You probably wouldn't even know there was such a thing unless your child had cancer or if you heard it from me!!! Thank you all so much for following our story and being aware of all that cancer can do to a family. I will post the link again to sign up for the Light the NIght Walk and Ally's Army team...we will be walking for all those who have battled a blood cancer.

http://pages.lightthenight.org/soh/Dayton10/AllysArmy


Friday, September 10, 2010

USA Today Ad

Since Dad successfully won the National Man of the Year title through the Leukemia and Lymphoma Society, a congratulations ad will appear in the USA Today. I am very proud that they are getting National Recognition, so I have attached the ad here (I only have a black and white version). It will be running in the paper next week...I was hoping to have an exact date for you so that those across the country can look for it. If I get one, I will post it. Here is the ad:



Ally and Dad will also be featured in some LLS advertising media, etc. Here is a portion of a brochure that LLS has created:
Ally is continuing to do well. She had another first yesterday: she started taking piano lessons. She has asked me and asked me to do this for years. I guess I finally relented. I feel bad because neither Jerad nor I are musical and really can't help her. But I was convinced that should not be a problem and someday I do want to learn myself! My Mom and Dad had a piano that Dad had actually moved out of their house a while ago. (oh yea, they didn't play either, but had the piano) With my Dad's blessing, we are now moving it into our house. Thank you Dad. Bye bye to my dining room. But the piano is more beautiful anyway!

Ally's ANC continues to be high (2900!) so Dr B raised her daily chemo levels again. He has raised them every week now for this entire month. We are up to 10ccs of 6-MP and 8ccs of methotrexate. He wants her ANC to be 1000. She is due in next week to the hospital on Thursday for a spinal tap, intrethecal chemo, and chemo through her port. She will get a spinal tap every three months now. We used to do spinals a lot, at one point once a week. Now that we haven't done one in a while it is looming large over us. I hate for her to go through it and I NEVER want them to find any leukemic cells in that spinal fluid. That just happened to a friend of ours. I would appreciate any extra prayers for her in this regard.

Thanks and have a good weekend!



Tuesday, September 7, 2010

Big Day for Barnetts

So, when you go through what we have been through, it is with great hesitation that we enter back into doing normal things. With some fear running through my blood, I allowed each of the kids to do an extracurricular thing. We really didn't have that luxury before, and I can't be certain that we have it now. But I am also not willing to sit back and wait for something bad to happen that would warrant me not allowing them to do things. I think it is important that they do "something" outside of school, but I would never force them to do anything. It is their choice.


We had three kids with three "Firsts" today. I am really proud of them all and really grateful for the day we were given (even though it was quite hectic). Ally had her first night of swimming, Evan had his first night of playing soccer with the Silver Bullets, and Carly had her first dance class.


So when Ally asked if she could do swim team, how could I really tell her no? How could I? Tonight she tried out for the Beavercreek YMCA swim team. She had to get in the water and swim one lap each of all four of the strokes. She does not do them perfectly...but she did them and she made it the whole length of the pool with each one without touching the bottom. She never stopped and she did her best. I am sure that most kids her age are flying by, but with her I just have to encourage what we have. I am sure she will learn a lot through her practices and I do believe it will be great exercise for her. Coach Chris (who was also her Idle Hour coach for the one day she was on swim team before her diagnosis) helped her out. He told her she made the team. He is super encouraging to her (and me) and said he will modify things for her if he has to. He even told me that I made his day when I asked him about her swimming. You have to love people like this: people willing to make a difference in the life of a child. Again, I have no idea what the future will bring, but I hope that all works out. My gut is telling me that I have to let her fly....my little butterfly...I have to let her go and not continue to "wait" for something to go wrong. (and I also have to get in the pool with her and teach her how to do breaststroke)

We had to go to the blood lab right before the try-out....so here she is with a band aid on her finger prick and her Ally's Army bracelet on doing the backstroke. It certainly tells her story with one picture!
And Evan....he is playing First Grade Soccer with the Silver Bullets. He is now playing outside of the squares that he learned on in Kindergarten. It can be confusing at first, but our team did great! We had a lot of goals (10?) but who is counting? Oh wait, the kids are. They are too smart now to not know the score. No goals by Evan...
And Carly girl. What a sweet day for her. I had no idea what to expect out of her dance class but she has the most amazing and imaginative teacher. They were all practicing holding a cup of milk on their heads, and having fancy pretend earrings on that weren't to touch their shoulders, etc. A bunch of cute ways to teach them posture. Then the teacher put little butterfly wings on the girls and had them strut their stuff across the dance floor, with Taylor Swift playing in the background. Well this is right up Carly's alley.....she strutted her little Miss Tudi strut right across the floor. I thought I would die it was so cute. Carly was thrilled with the whole thing. Too bad dance is only one half hour a week! She will be begging to go back. Seriously, check out her hands on her hips: (picutures not great since I took them through a window!)




Thanks to all of the Army for following us through the good times and the bad. Today being one of the best days I can remember in a long time. We need more!

And thanks to everyone who has signed up to walk behind Ally on Sept 30. The support is amazing and lifts us up so much. I believe I have the whole WSU basketball team already signed up out there. Thanks Billy. We love our Raiders! If you haven't signed up yet, you can do so here:

http://pages.lightthenight.org/soh/Dayton10/AllysArmy


Monday, September 6, 2010

Labor Day Weekend.

Wow, another holiday weekend has gone past us. It was beautiful here, almost chilly on Saturday. It really brings the feel of fall to the air. We really had a nice weekend and tried to do a lot of those summery things (at least) one last time. We had a nice pool party with some family and friends on Friday night. We made our own pizzas in the outdoor pizza oven and really enjoyed seeing all of our Kohler's friends too. It is such a great thing to be surrounded by people that you love on a beautiful Friday night, especially knowing you have a full three days off right after! I watched in amazement as Ally was running from one thing to the next...water slide....diving board. It never fails me, if I see my girl start running (and it is still a very weak and very uncoordinated run) it makes me SMILE. I just love to see her get a little spring in her step and a little smile on her face.

We also went up to Columbus on Saturday to see more family and celebrate my niece and nephews birthdays! Happy Birthday Bella and Ben! I always love seeing my twin one year old nieces and I LOVE LOVE seeing my two girls fawn all over them. We have one more Barnett cousin due this month which will give me my 12th niece or nephew. Phew.

We really tried to hold onto summer a little while longer....eating on the deck, playing outside, watching some soccer, and even taking the kids out for a round of golf. We have promised them all summer, but man it was just too hot up until now. I loved taking them around Walnut Grove and playing golf with them. I always golfed as a child, and my Mom was an avid avid golfer. When I go to Walnut Grove, it is one of those places that I can just feel my Mom right there with me. A little butterfly was following us around and I told the kids stories of how Ma used to be Queen of the Green there. I took them in the locker room and showed them her picture and her name on the plaque (three times!) for being their league champion. We were riding around on the golf cart and I was telling Carly how I really loved my Mom. And she turned to me, with her sweet little voice, gave me a hug and said "NO, I love my Mommy" And there is another moment that I never want to forget.



My sweet Grandma Josie is in the hospital now...she is the one that we just went to see a few weeks back in Erie. She is battling a few ailments, but mainly she is 91 years old and things just get hard at that age. We are praying she gets better and can go back home. I sent my love over the phone, but it is just not the same.

We continue to relish in the normal aspects of our life. We spent a good part of our Labor Day cleaning out Ally's closet/room. It is amazing how messed up things can get when you fly by the seat of your pants for two years. There has certainly not been time to do anything organizational like we did today. Jerad even helped me out and didn't complain! We are just happy that we are getting some time to get our lives back in order. So many things forgotten, misplaced, ruined, etc as we just struggled to get by. We pray that our normalcy continues, and we continue to pray for all of those suffering from diseases like cancer. We also pray for those that have lost a loved one and are now left behind to mourn.
Thanks to all who join us in our prayers.

Thursday, September 2, 2010

A couple of Ally Events

There are several events coming up in the next month or so to support our daughter and Ally's Army. Thanks to all who have taken it upon themselves to raise money on her behalf. We use all funds raised in a very responsible manner to try to STOP this disease and help those going through it.

Here is the link to sign up for Ally's walk this year. The Light the Night walk is a very moving experience. It is held on September 30th this year. Consider walking behind Ally to support her and all those facing a blood cancer. You can sign up (or just donate) here.

http://pages.lightthenight.org/soh/Dayton10/AllysArmy

Thanks to Lori Fultz (a former co-worker at Iams) and her team for organizing the Poker Run to benefit Ally. Here are the details. All are welcome (any biking friends out there?) See attached flyer.

Finally, the WSU Men's Soccer team and their wonderful coach, Bryan Davis, are having an Ally's Army night during their game against rival Butler. There are nine fraternities and sororities at WSU who are all raising money for Ally's Army in conjunction with this soccer game. It is going to be held on the evening of October 16th. We would love to show them our support by having our Army or orange there. Please mark your calendar if you are interested!

Although we have been affected by this disease, we plan on beating it and using our story to help so many others. Thank you all for supporting us. We are grateful beyond words.


Wednesday, September 1, 2010

Sign up for Light the Night


As I suspected, my littlest girl ended up doing great on her first day of preschool. She ran right into her class and I had to call her back out to the hallway to give me a kiss. For a person who was born into the life of medical drama, since six months of age, she is a very well adjusted little girl. I was very very proud of her. Jerad asked me if I cried. "HUH? What did you say? Cry? HECK NO" I was not crying for sure. We have had plenty of things to cry about over the past couple years. Plenty. I even am a crier. But this was overwhelmingly a happy moment for me. I used my two hours wisely and even took about half of it to do something for myself. (Thanks Joey! So glad I have gotten to know you)
What is even more remarkable to me is how much Ally is thriving in school. She absolutely loves it. She LOVES her teacher. Even crazier, she is loving learning. I think she truly likes doing the 3rd grade work. She is like a little sponge absorbing all that is going in her classroom and she even has the ability to tell me all about it. This is a great thing because last year was so hard on her and learning fell down the list a little. It was somewhere behind just surviving each day. Now she does her homework (on the bus!) with no argument. She wakes up all on her own each morning. She helps to wake her brother (not easy) and actually will eat before school. She even mentioned something about reading a book at recess. I said "why don't you just play with the other kids? you can take a break!"
We have also contacted the swim coach and the piano teacher. She wants to do it. How on earth could I ever tell her no? I will drive myself ragged....it really doesn't matter. I just have to keep reminding myself of where we have come from.
I think I finally have the Light the Night Webpage ready to go. If you are planning on walking, which I hope you are, would you please sign up at the following link. I hope to have many of you there to show Ally our support. This year her "survivor" balloon will have that much more significance to us. She has certainly earned it.