Chemo Tuesday, upon us again.

We are heading down to the hospital for Tuesday chemo. She will get 2 different ones. I am suspecting she may need blood too. I panicked a little when she came home from school today (yes, school) and told me her chest hurt. I went through about 21 questions with her because several of her chemos have the potential of damaging her heart. It caused me a small panic attack because I have never heard her say once that her chest hurt. I called down to the hospital and they are suspecting it is actually heartburn (phew) caused by the steriods that she is taking. I gave her a Tums. We have one more dose of steriods in the morning and then we are off for seven days. But they will take days to get back out of her body. As I have mentioned on here before, the steriods really make her down. Today she was barely even speaking to us. She just floats and/or hovers around with a very sad look on her face. It really upsets me...I can't stand the complete lack of emotion...but now I have grown to know that it is temporary and will be lifted when she completes the steriods. This time it has been slightly better as she has been sleeping better. The steriods usually make it nearly impossible for her to sleep. I think we have helped this by giving them to her at breakfast and dinner instead of waiting until bedtime. Just a thought.

I wanted to share with you the letter my Dad has sent out for his Man of the Year Campaign for the Leukemia Society. This is also a link where you can donate to his campaign, which would be very appreciated. He mentions how he is doing this for Ally...but also for Ally's friends Ashley and Davey who lost their lives to the disease. I am really proud of my Dad for taking on this iniative. No one "wants" to spend their time asking friends for money. Fundraising is very hard work. But then, when you think about it, nothing is as hard as battling cancer, especially when you are just a little eight year old girl.

Check out his site and make a donation if you are so inclined. Little by little, maybe we can make a difference.

http://soh.dayton.llsevent.org/pledge/index.cfm?mid=VOTEBOB

Overwhelming

The weekend is over and the kids are snug in their beds. We have successfully made it through a week with two kids having fevers and another getting a big dose of chemo. We are starting to plan for lots of things in May (Ally's first communion on May 1, the big celebration party on the 22nd, going to PA to see my grandparents, even a plan for my first ever garden...in collaboration with a few of my girlies). It is feeling a little overwhelming to me to have other things going on while I know this is going to be one of Ally's hardest months. As the calendar stands now, she will start her radiation treatments in Cincinnati on May 12th. That is also looming large in my mind. Two weeks of driving to Cincy and putting my girl in front of the radiation that could have some long-time side effects for her. It is hard to do, yes, but the possibility of the cancer returning on her brain is even worse. It cannot be an option. Thus, we move forward with treatment as Dr. B directs us.

So, I am trying to take a lesson from all that I have learned in the past eleven months. (WOW...almost 11 months now) And the lesson is to not get stressed out. Because all of these things mean very little if we end up back in the hospital again with any sort of issue. I guess I can plan a communion party in two days or rely on a whole group of other people to plan the 22nd. I have to make my focus on Ally and I will. I still have great trouble keeping up with regular things like email, laundry, birthday and/or thank you cards, mail, and messes in my house. Someday, someday, I will have time for all of these things. And more.

Ally is doing pretty well all things considered. Her biggest complaint is her joint pain...excessive pain in her legs, hips, ankles, etc. I feel so bad about it. She continues to take multiple baths a day to try to alleviate the ache. She puts the lovely rice bags on her throbbing joints (Thank you to Mary Nutter's mom for those lifesavers). We have even resorted to Vicodin a few times. However, you should know, she keeps going as much as possible. Shopping with my Dad, having her girls spend the night, going to her brothers soccer game, and hanging out with her cousins were a few of her weekend activities. The doctors always say the very best thing we can do for her is to keep her moving. And we do that. But by the time bedtime rolls around she is in quite a bit of pain. This is not something an eight year old girl should have to deal with...more like an 80 year old. She is also dealing with the effects of being on high dose steroids for a week. They totally put her into a daze and she offers little to no communication with us. She always appears sad, although deep down I do not think she is.

I will have to post a couple housekeeping items coming up here. First, the event called Ally's Army Battles Cancer, which is our party on May 22. We are in the process of getting tickets printed up. Once this is done we will have a few locations where you can purchase your tickets. This will serve as an RSVP to us and allow us to know how many are coming and plan for food, drink, etc. Also, some have asked if this is a "family" event or is it "no kids". We are asking that no kids attend. The reason being is that it is more of an adult party...beverages, dancing. But more importantly, we are going to be running a live auction to try to raise more money for our cause and that could be a bit hard with kids running around, etc. Don't worry, Ally is the exception to that rule and she will be at the party for the first hour or two running her lemonade stand and talking with everybody.

There is also a texas hold-em poker tournament being held as a benefit for the LLS Man of the Year campaign. I believe they are accepting the first 100 people. I do know they had an awesome time when they did this in the fall. A woman even won it! If you desire more information, there is a contact below.

May 6, 2010 6:30pm buy in, starts at 7
Texas Hold'em Tournament
call John at 937-427-6456 or email to johnk@synergybldg.com

Thank you for continuing to support and pray for our family as we continue this very long battle against Ally's disease. We are still very much in the depths of it, and appreciate all the love and support that we get from the Army. I continue to be amazed at the kindness, generosity, and love that has come out of this situation. Your prayers for Ally and our family mean so much to us all.

I'm so Excited!

A while back, I was reading the Dayton Daily News and they had an essay contest for "Salute to Nurses" week (or something along those lines). We have a ton of good nurses at Children's, so I cut it out and set it on my desk. I was thinking about writing something up and submitting it. I think all of the good nurses are not recognized enough and they do such amazing work. Finally, on the day of the deadline, I sat down and wrote my essay about one of Ally's favorite nurses. I will share what I wrote someday......but not today. I have to keep it a secret because they just notified me that she WON!!! Woo hoo!!!! She doesn't even know it yet. Well at least that is what the gal at the newspaper told me. They will be notifying her sometime in late April and I think they are featuring the winners in the newspaper sometime in May. So now I am super glad that I took the time to write something, because she is one top-notch nurse.

Actually, I could have written an essay on several of the nurses...really...I might just have to do this again and again. We love all of them.

And we are off.....

Ally and Jerad made it home at about 5:30....she did fine with the spinal tap even though her Mama wasn't there. Jerad said it was one of the better ones she has ever had...no screaming, etc. She got the chemo injected into her spinal fluid, and also regular chemos Vincristin and Doxurubicin (its red). The Doxurubicin is the culprit that makes her lose her hair. AGAIN. She had just gotten a little peach fuzz back. She also got her monthly antibiotic infusion and an infusion of IVIG which boosts her immunity. I was very glad they did this considering her sister had the fever, and her brother was home with the fever that very same day. If Ally would get the fever, it would likely result in a hospital stay since her ANC is on its way downward.

Speaking of ANC, we are back into the world where it is going to be very low. No quick trips to the store or anything like that. No movies or indoor events. They allow school, but that is about it. Luckily it is quite warm outside and she is allowed to do anything outdoors. We really got spoiled by the last phase where her ANC was almost always above 1000. Of course we also paid for that with pancreatitis. And, speaking of pancreatitis, Ally never ever never ever has to get those PEG asparaginase leg shots again. They suspended her last two because of her bout with pancreatitis. I hope this is ok with the cancer cells (if there are any), but I am feeling that I don't want her to have that chemo again after what we went through.

So Ally pretty much felt yucky all day today. We were back to lots of complaints about her stomach and hurting all over. Not eating. But that is okay because she had gained the full 12 pounds back that she lost last month. Man, that girl can fluctuate her weight! She didn't feel up to going to school and I don't blame her. Evan was home today too. It was a long day filled with many requests by my children and I got absolutely nothing done. She did go outside some this afternoon and evening which is great. The girl is loving hitting baseballs for some reason and Jerad says she can knock them pretty far.

Last but not least, we found out that the Community Blood Center would like to feature Ally and her story in their annual report this year. And some other literature they are doing. We were honored that they wanted to feature her and Lord knows she has used enough of their blood. Jerad is working with them on the story aspect of it and I pulled out a few of my pictures. I will share it if I get a copy! As always, we are so grateful to the blood donors...

As for now, we are not sure where this ride is taking us...wondering if she will get worse before she gets better. Not much recovery time since chemo comes again on Tuesday. And thinking she will need blood by then too.

Thanks to all who have said they are coming to her party on May 22nd! I heard rumblings of getting a busload of people here from Junction City/Columbus. I will get more details on it out here soon.

Day 1 of Delayed Intensification II

We received the call late yesterday that Ally's bloodwork was finally acceptable for her to start treatment again. Her platelets were well above the 75 threshold at 124. So today, Ally and Jerad left for the hospital at 730 am...she will be getting a spinal tap, several chemos, and her monthly infusion of antibiotics. My heart is heavier than normal today. As they walked out the door my tears began. I am missing her first procedure ever today because now Evan has caught the fever that Carly had last Fri/Sat. He is doing alright, but I certainly didn't want to leave him with one of my caregivers and spread the germs to their kids. I imagine he could have already infected half of his school since he came home from school yesterday with the fever and I didn't know he had it. So although, I wanted to be with Ally, I must keep my other children safe and well too. It is so important to me that the siblings never be forgotten or left as an afterthought.


During the spinals, Jerad always stays right up in Ally's face. Like two inches away. She watches for her Daddy and he talks her through it. He is her protector during these scary times. She would choose him to be right there with her. I don't blame her. Daddies are meant to protect and Jerad is about as comforting a person as you can get. So Ally is in good hands today. My biggest regret about not being there is that I am not going to get to hear the Day 1 talk where they tell us everything we can expect for the next eight weeks. They usually go over a calendar with us and talk about side effects, etc. This is going to be a very rough eight weeks that will be punctuated by Ally getting cranial radiation in the middle of the phase (beginning/middle May). I have many questions, debates, and fears about this. I guess they will be answered later when we meet with her Radiation Oncologist in Cincinnati. I asked Jerad to either record the conversations on his phone today or take notes. We'll see. While he is the protector, I am more the keeper of medical information and the person the doctors talk to. I am the researcher and the calendar keeper and the one who has a brainful of information filed away from countless hours spent on the computer....following other kids and learning the best I can to protect Ally in that way. I am the one who asks all the questions. (I know, shocker) It will all work out.

We have been given some sort of strength to get through this ordeal. We will need all the strength we can get to make it through this next phase. Jerad sent me a picture that he took from his cell phone. It was the sky right outside Ally's hospital room window today. He said he thinks someone is peeking out from the sky today and watching over our daughter. And I think he is right.....Praying day 1 goes well. Tonight starts the dreaded steriods. God will help us through.

Special Announcement

Ally was diagnosed with leukemia on May 27th, 2009. As you all know, this was a horrific day in the Barnett and Mills world. If you are still reading, you have followed us through this journey, or maybe you have picked up with us part-way through. If you are reading, you are a member of Ally's Army. An Army that we have built up and maintained contact with and garnered strength from and will be eternally grateful for. Noone said this would be easy, but without the Army it would have been impossible. I still look around at many events and see loyal wearers of the Ally's Army Orange wristbands. It still brings tears to my eyes. (Even last night at a good friends wedding....the groom, the best man, the parents of the groom...all decked out in their finest attire, but still supporting our girl with their wristbands....THANK YOU DETMERS)

Tonight I have a special announcement. To celebrate Ally reaching the 1 year point in her treatment, and to celebrate her entrance into her maintenance phase of treatment, we are having a BIG PARTY. And we would like to invite every single member of Ally's Army to come. Family, friends, teachers, co-workers, old friends, new friends, our hospital family, Ally's nurses/docs...anyone who has ever been touched by her story.

The event will be:

Ally's Army Battles Cancer

May 22nd, 2010 (evening, time TBA)

At the one and only Fox Hill

2037 Beaver Valley Road, Beavercreek

Food and drink have been DONATED

Several local bands will be performing

Silent and Live Auctions will be held

There is one catch. There will be a $25 entrance fee to get into the party. All of the proceeds (ALL!) will go to the Leukemia and Lymphoma Society to make a difference and fund a cure! My dad has taken on the noble task of running for the LLS Man of the Year campaign. He is trying to raise as much money as possible for the LLS on behalf of his granddaughter. If he can raise enough money (AND HE WILL) he will be able to name a research grant in Ally's name and help someone to research a cure for her specific type of leukemia (ALL) You all know that my Dad is an amazing philanthropist with a huge heart and he has done many good things for our community. He will continue his legacy as Ally battles her cancer and wins and we will not forget to MAKE A DIFFERENCE in the many lives that have been affected by blood cancers.

I will post more later as to how you can help him in his campaign. Fundraising is hard work, but fighting cancer is even harder, especially when you are just a little girl.

I would love to beat the number we had at Ally's Light the Night Walk last year. We had 400 people there for her. A huge goal, I know. We can beat it. We will have a fun party and celebrate and make a difference all in the same night. So please mark your calendars now: Saturday May 22nd. And spread the word. All are welcome. We would love to see you there and hug every single one of you for your support.

Ally and her Pa (my dad)

Bob with his grandchildren (minus one)....

They give him many reasons to make a difference in the world.

Shiloh

We have had a bit of a rough ride for the last few days. Not because of Ally, she has really been just fine. Despite Ally being okay, I suppose other stuff must happen in our lives. Our little Carly has been battling a fever this weekend and we are trying out hardest to keep the sisters apart to help Ally. Anyone who knows my girls...knows they like to be right by each other. And with a heavy heart I write that our beagle Shiloh passed away on Thursday night. He had been sick for a while now with an enlarged heart. Last Spring, he went on meds for it and they told us then that he would probably only live a year, maybe less. He lived the whole year, and he lived it pretty happily, but towards the end he was coughing a lot and started retaining more fluid. He was looking huge with extra fluid. I had made an appointment to take him to the vet on Friday, thinking they would probably put him to sleep. But Thursday night....he just wasn't doing well. I carried him in from outside and set him down. He never moved again and I sat with him for about a half hour as his breaths got shorter and his heart was beating less and less. Jerad wasn't home, and I tried to keep the kids away and keep my wits about me. My friend Suzanne (who helps me with everything else in my life) came down and helped me out. She is a true friend having to witness all that and help me get Shiloh out of the house too. The list is a mile long as to why she is a good friend, and I can add this to it.

We rescued Shiloh from the streets of Junction City during Thanksgiving 1997. I tried to find him a home, because I already had a dog (Reilly), but that option didn't work out so much and he became Reilly's brother. I have always had beagles, since I was a little girl, and have a soft spot for them. It was his time to go, and now he is running happily through doggie heaven with my other beagle Bitsy.

The kids were so so sad. I have never seen Ally so upset about something. Our girl, who has remained relatively emotionless through all the trials of the past year, went to bed sobbing. Evan too. And this part of it is what breaks my heart so much. My kids have had to endure so many losses in the past year. It is not fair. I never lost anybody in my life until I was an adult.

Shiloh was buried at Fox Hill right on the edge of the woods. The kids are making a cement stepping stone to mark his grave.

Rest in Peace little Shiloh.