Thursday, September 30, 2010
Prayers Needed
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
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
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.
oh....and Jerad
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.
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
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
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.
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
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.
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
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
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
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)
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.
Thursday, September 2, 2010
A couple of Ally Events
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.