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.

Constantly in flux

Well the update on Ally has changed yet again. I guess we are learning all about being flexible this week. Lots of scheduling, trips to the blood lab, and phone calls have ensued. After taking her in today, I found out that her platelets have still not gotten to the threshold of 75. They went from 57 to 64. Not quite ready. (normal is about 150) This explains why she bled through the band aid so quickly after the finger stick. We wanted to go Friday, but turns out that they are too busy up in the almost home unit where they do the spinal taps. Bummer. They are also too busy on Monday. Who knows, there must be a whole lot of spinal tap action going on. They only allow 3 per day. So I guess we will wait until Tuesday. This has its pros and cons...good weekend, but this now pushes her intense treatment on into June and past the one year point. I just wanted to be done with it by May 27th, the one year anniversary. It was only supposed to take 11 months, but the delays end up eating up valuable time. It also means our "day" for the next eight weeks is Tuesday...which we wanted Friday because that helps us out in getting childcare for the other two kiddlings. ho hum We will deal with it amongst everything else.

Secondly, for months now I have been wanting to share a special song with you. I keep wondering how to share it, but I finally figured out how to do it. It is Allison's "Song of Love" There is an organization called Songs of Love that write and record a song for children with a life threatening illness. (again, I hate those words) I sent them a little bio on Ally and they included everything in the song from Bobo (her stuffed animal) to her siblings and dogs to her best friends names. They talk about her liking soccer and swimming and Hannah Montana too. It is kinda cute. Soooooooooooo.....if you watch this little video you get a two for one. Our Easter pictures from Junction City and Fox Hill and the song playing in the background. I just wanted everybody to hear how cool the song is. The kids love it and we are quite grateful to the organization for doing this for our daughter. They call it the "medicine of music.

And one more little thing. This is a video of our girl Ally doing the egg hunt this year. I had to publish the clip, not super exciting, but I wanted to have it for my Gramma Ruth. She missed the hunt this year because she wasn't feeling very good. So here you go Gramma....your great-grandkids in action. (press the side facing triangle...)

Change in Plans

We had a great Easter. I will post pictures later (too busy watching those Butler Bulldogs in the Nat'l Championship to do it tonight) We had a fun Easter morning at home with an egg hunt. Then we hopped in the car and drove all the way to Junction City (Jerad's hometown) to have Easter with his extended family. We didn't even tell Grandma and Grandpa we were coming...we pulled off the best surprise ever when Ally hopped out of the car. She hadn't been there in a full year...last Easter was the last time she had gone. Technically, we aren't supposed to take her more than an hour away. The reason being....if anything would go wrong and she would run a fever, she has to be hooked up to IV antiobiotics within an hour. I would NEVER EVER want her to go to another hospital...just transferring her records would be a giant task. So we don't venture very far. Ally had been doing so good and we knew her ANC has stayed high so we decided to take a risk. And our risk taking paid off...thank you God for protecting her during the trip. 7 of Jerad's aunts/uncles were there and I think they all loved getting to see Ally for real...not just on the blog.

We drove two hours back in the car...just in time to make it to my Dad's house and our extended family Easter. Dad has always been a champion egg hider and we have never missed an egg hunt. The weather was perfect and the kids set out for the meadow to overfill their baskets with eggs. We all pull together quite well, sharing the work, to have a tasty and plentiful Easter dinner. This used to be one of my Mom's strong points...she could cook up a feast for many, but we made due and got along fine. We are learning.

Today, in the midst of our last day of spring break we ran Ally to the outpatient center to get her blood tested. Turns out her ANC was plenty high at 1850, but her platelets were only 57. This means she is delayed and can't start treatment yet. We are gonna try again Wed with plans to admit her on Thursday to start day 1 of her last intense phase of chemo. A little disappointing, but there is not too much we can do about it. They also informed me that her hemoglobin was low (7.6 and they transfuse blood anything less than 8). They asked me if she was symptomatic with headaches or fast heartbeats, etc. I said to Robbie...let me tell you this...Tell Dr B that she rode her bike four miles the other day. I told her that Ally was doing great. Robbie said she could tell that Ally was rebounding as her monocytes were very high (the baby "good cells") and they we didn't have to transfuse but will need to check again on Wed morning. Come to think of it, she rode her bike about two miles again tonight. The exercise is just so good for her.

So we have a few more days until we start this last phase. It is going to be the hardest phase yet. It will definitely bring about low counts again (which we have been spared this for the last two months and we are now spoiled). She will become neutropenic and will almost certainly get another fever. I am guessing early May. We will be confined to our home again, except for our frequent trips to Cincinnati to get radiation. So it is gonna be one big last push but we can do it.

More pictures later and hopefully we will start on Thursday. Please continue to pray for all of our cancer family. Especially Lincoln and Maggie. And another little 4 year old girl Brynn who is nearing the end of her life.

Happy Easter.

Wow I haven't posted since Tuesday. I saw my friend Laura today and she said she had figured me out. When things are going good, I don't post. And she is right. We get all caught up in regular life things and this week has been spring break so we've tried to make life a little extra special. No news is good news.
Ally made it past the warning point and then some. She is doing really well and was quite able to enjoy her spring break which was a blessing. Jerad took the day off work on Friday to actually do something fun. In the old days, Jerad and I spent a bunch of time on the bike path out towards Yellow Springs. So we packed up a picnic lunch...got all the bikes into or on the car...and off we went to show the kids our old favorite spot. I am fairly certain that we may be the only parents of someone with leukemia that think that taking their child on a long bike ride is a good idea. We rode out two miles and then turned around and rode back. We stopped somewhere in the middle at a covered picnic table and had our Good Friday meatless lunch. Ally never complained once. (Evan, well a few times, but he was a trooper too). Carly sat in the bike trailer that Jerad was pulling and sang almost the whole way. We stopped at this beautiful horse farm and watched a horse learning how to do jumps. The weather was perfect...the scenery made me think we were on vacation. Yes, it is a scene straight out of "leave it to beaver" or something like that. And that isn't typical for our family. No, we belong on Grey's Anatomy...a show I used to love, but now can no longer stomach even a glimpse of it. No thank you to any medical drama.
So, to summarize, Ally rode a total of four miles! Yes! We are the parents that push her along sometimes, but it is for this reason that she is so STRONG. If we let her lay around all the time, she would have much more trouble bouncing back all the time. You gotta love her determination to be a normal kid. It comes out when she is feeling good. I am proud of her.

My family on the path

All three of my babies...
This picture does not due it justice...the beauty of the hills and the horses...
Loving the ride

We finished our fun day by getting ice cream at the local dairy, feeding the animals, riding their farm train, and then coloring Easter eggs with her cousins at our family's Good Friday fish fry.

Crafty girl made some cool eggs...
Evan LOVED doing the eggs this year.

As I sit here on the eve of Easter I am somehow remembering Christmas Eve. Me, home, doing everything by myself and feeling sorry that our family would be apart on Christmas morning. Yet another thing ruined by the disease that entered our lives 10 months ago. But on THIS day we are grateful. So grateful to be celebrating a major holiday at home together. And with our extended family. So grateful that our daughter's leukemia is in remission and that she has the strength to enjoy a bike ride. Grateful that God put Ally into our lives and gave me the power to take care of her and watch over her while she teaches so many people the simple lessons of life. She is a source of inspiration to so many. It is no accident that this has happened to us. We were chosen for this journey for some reason that we will never know.

Let the resurrection joy lift us from loneliness and weakness and despair to strength and beauty and happiness. ~Floyd W. Tomkins

Happy Easter to Ally's Army. THIS, my friends, was my favorite egg that she created.