Monday, June 28, 2010

NATIONAL Man of the Year

My Dad called me with the news late this afternoon. He did it. He is the NATIONAL Man of the Year for the Leukemia and Lymphoma Society. He raised more money than any other person in the United States....EVER. The most someone had ever raised in years past was $286,000. He won the 2010 honor by raising $430,000. So, he is indeed, the NATIONAL champion and will be featured in USA Today, possibly a picture of him with Ally. I will get the date to you when we find out.

It is quite amazing to me that the most money was raised in a small town like Dayton Ohio. Not New York. Not DC. Not LA. Not Chicago. He beat them all. It will bring four research grants to further the cause and hopefully make more progress towards finding a cure. Maybe the cure will be found. We can't stop trying until the kids stop suffering. There has to be a better option.

It is even more unbelievable that this all happened because one eight year old little girl was diagnosed with ALL Leukemia. And one family refused to back down. Someday she will understand the magnitude of it all. It was done for her. And also for Ashley, Davey, John, and Lincoln ....in their honor. And for those survivors of the disease who are still fighting: Ally, Amanda, Allison, Katie, Tori, Aubrey, Livi, Maggie, Bonnie, Owen, and Nan. We cannot forget our other cancer family of Jackie, Julia, and Skye....and the many others that are fighting this disease who we don't even know.

We also found out some exciting news that the LLS is announcing some winners at the July 19th Cincinnati Reds Baseball Game.

The team that raised the most money in Ohio for the Light the Night Walk : Ally's Army
And the Man who won the National Man of the Year Campaign: Bob Mills

Together raising half a million dollars for LLS and a cure.

Both of which also involve our girl and she will be one of two "heros" throwing out the first pitch in the game. Which in my mind is a once in a lifetime opportunity. Wow...on the field for a MLB game.

Proud cannot describe it. Words cannot say it. The emotion is overwhelming. Thank you is not enough, but it is all I can do.

Thank you to everyone for rallying behind our cause.

Sunday, June 27, 2010

Weekend at Home

Well, I haven't posted in a while. Usually, no news from me means good things are happening. And that is the case with the Barnett family. We enjoyed a weekend at home (after driving to Columbus for the last three weekends straight). But if you know Jerad, he never just sits at home. Life is too short for that, and, well, we have done enough staying home and not doing anything fun for about the last year! So....let there be fun for our dear kiddlings...they certainly deserve it. We have done some pool time, some nature walks, and some golfing (both putt putt and the range). We have enjoyed visiting with our friends, playing board games on the deck, and even going out to dinner. (mommy likes that) I have shared some pictures below.

We also sat down at our Sunday morning breakfast and tried to plan out the summer....birthday parties, visiting family in PA, class reunions...just normal stuff but we had to get some dates on the calendar. However, as we were doing it we realized that we haven't truly been able to plan anything in such a long time. It almost goes against my grain to plan anything now. It is hard for me to bring myself to do it. I am still making excuses in my mind or counting on not being able to do something at the last minute. I just find it hard because somehow I think we will "jinx" things if we plan something. I guess I just have to get past that. It's hard to explain......but a few of you Mom's out there know where I am coming from.

Ally is doing really well with all her "at home" medications. It is a lot, but we have done ok. She just finished her fifth (and last for the month) day of steroids today. She is taking a new steroid (called prednisone) and it seems to be a whole lot easier on her than the decadron (dexamethasone) was. She has had some trouble sleeping and is definitely more hungry, but I haven't seen her go into that catatonic, uncommunicative state that she used to go into. I think this is a HUGE benefit for us, well hopefully she always tolerates it well. I hated seeing her on the steroid and always felt like she was sad. It was hard to see. She is taking her daily chemo (6-MP) and we usually wake her up at night to take it. We actually set an alarm. It is a hard drug to take because you are not allowed to have food for a three hour window around it....and, well, when your girl is on steroids this becomes almost impossible. And milk/dairy will really screw it up too. So we just wake her up at night and her stomach is empty. We may still have to figure that one out....

Thanks for praying for our girl. It is quite scary to let off on the chemo. After Mom died, I started to relax a little bit, and then we got slammed with Ally's diagnosis. It is very hard for me to let my guard down. I am constantly worrying about what is going to hit my family next. But hopefully, it will involve more days like this.....
Putt Putt with friends
Concession stand duty
Water slide trains

Surfing Practice
Looking for crawfish, but then finding snakes too....
Which was quite scary for Carly so she hung on the side...

Wednesday, June 23, 2010

Day 1 of Maintenance

Well we finally made it. We crossed the glorious bridge into long-term maintenance. I have many mixed emotions about this phase. It is long (16 months still) and she still gets a little chemo every single day of it. That is something like 500 more days of chemo ahead of us. It is not going to be a walk in the park, I know. She still gets steroids and methotrexate (she does not react favorably to this one)...but I am still hoping it is all easier on us.

She started the phase with a spinal tap. It didn't go very well. As soon as we walked into the room, her normal nurse said wow she seems really relaxed today. This is as she is laying on the table getting all hooked up to everything. And she did seem relaxed, I agree. You can just never tell with her. She fights the sedation so much. She NEVER actually goes to sleep, which makes it hard. As soon as Dr B started prodding around she was screaming. The needle wasn't even out yet, he was just using his hand. So when the needle went in, the screaming got worse. For whatever reason, he couldn't get the needle in the right place and had to stop. This makes me extremely nervous...I always am worrying that it has come back. He asked for the nurses to give her more sedation, which they did, and he tried again. It was still quite hard, but he got it and she was not happy about any of it. She finally went to sleep after the procedure was done (they invert her..head lower than feet....and make her stay that way for an hour) This allows the spinal chemo to travel up through her spinal fluid and get around her brain. She slept the whole time, but then woke up very crabby and agitated and saying she wanted outta there. (which was not an option at the time) She was also throwing up a little, which always seems to be the side effect that she gets. The agitation is a result of her getting extra sedation medication. It happens every time they give her "extra", but really not much we can do about that. It wears off eventually, and we get our regular Ally back. And the nurse who made the comment, whom we love, said ...sorry I jinxed you by making that comment about Ally being relaxed.

We got full lessons on all the medication we are giving her at home. It is A LOT of medicine. She is now getting five days of steroids every month...and it is now prednisone instead of decadron. They say the side effects are a little less with this one. But still it should cause her to eat extra, have trouble sleeping, mood changes, etc. We do not like steroids in our house. Every parent with a child with cancer dreads "steroid week" but then the other three weeks should not be as bad. She is taking 6-MP chemo every night...not allowed to have food anytime around this, so we wake her up to take it. She will also take methotrexate once a week. (another chemo) She also has other meds to mitigate the side effects. We have a pretty detailed calendar hanging on our fridge now to keep it all straight. The good news is that she only gets chemo through her port once a month! and a spinal every three months (not till September, woo hoo). We were told we don't have to be back to the hospital (barring any illness) until July 22. This is a very strange feeling. I don't have to be lining up the next babysitter upon leaving the hospital, etc.

So for now, we just pray and pray and pray and pray that her body responds well to this. That the cancer cells stay away. I am always reminded that it just takes one stray cancer cell. And it turns into 2 and that turns into 4 and that turns into 8....ugh.

I know I am sounding a bit crabby. It is all so hard to swallow. All in one day, this is what I dealt with:

Had the crappy spinal with Ally
Went to a funeral visitation for an 18 month old boy whom I loved
Found out another girl Ally's age, Skye, was told there was nothing more they could do for her cancer (kidney). "outta options"
Spoke to another friend whose daughter has been in ICU for a month with her blood pressure crashing and they don't know what is going to happen.

It is hard to just go to sleep and carry on with life when these things are going on. I feel guilt and sadness and anger and everything else. Sorry to lay it all out here, but it is what it is. We must keep walking through this valley and get to the other side. We must.

Monday, June 21, 2010

Lincoln Darien Hammett

We lost the baby of our hospital family yesterday. Baby Lincoln. I am so sad to report this, and I know many of you said prayers for him and always asked me how he was doing.
He lost his battle with leukemia in the comfort of his own home, very sadly on Father's Day. And all day long, on Father's Day, I could think of little else but Darien Hammett, and how he had just lost his son...the air force fighter, who fought the leukemia for months and months and surprised everyone with his strength.

I met the Hammett family shortly after Ally was diagnosed. Lincoln was diagnosed just about 2 months before Ally. He also had ALL. We spent many a day in the hospital next to their room. On quite a few of those days, the only thing that would make Ally smile...was Lincoln. She loved to go see him...he brightened up so many peoples lives. He was an angel on earth, I swear it. Fighting leukemia and chemo and fevers, but lighting up with a smile for his Baby Einstein shows or for a nurses face or for his Mama.

We have not told Ally yet. But tomorrow we are due down to the hospital. She is getting a spinal tap and her chemo and monthly antibiotic. She is starting back up on steroids, and an oral chemo called 6-MP. As soon as we get there, she usually asks about Lincoln. And we are going to have to explain, yet again, what has happened. For the third time this year...for her to lose a friend....but many more are lost that we don't even know. I hate this disease.

Rest in peace Baby Lincoln. You were so loved by so many people and someday we will meet again.

If you would like to leave a condolence for their family, you can do so here:

http://www.anderson-funeral.com/_mgxroot/page_10769.php?id=798665

Sunday, June 20, 2010

Happy Father's Day! Jerad here again for the annual Father's Day post. Janel asked me to post on Father's Day so I pulled up last year's blog for a trip down memory lane and sure enough, I posted last year as well. It's kind of hard to go back to where we were last year...less than a month into this ordeal, Ally with hair but losing it rapidly and looking quite sick, Ally having terrible belly pain at night and trouble sleeping, trouble taking medications, and trouble doing anything besides lay around. I think God has made my memory of those times intentionally bad because only when I re-read my post from last year did I recall the emotions of that day. But enough about last year. We are in a better place this year so let's talk about a GREAT Father's Day weekend.

We started off the weekend with dinner at one of our favorite Friday night hangouts, Rocky's Pizza in Beavercreek. It is literally on the back side of a super-market - not exactly location, location, location for the real estate guy in me - but the pizza and more importantly the bouncy balls that the kids love to get out of the gumball machine make it a Fantastic Friday (aka "FF") special. I didn't think about it Friday night, but there have been many times in the past year where that alone would have been special because taking Ally to a restaurant was such an event and so rare. Our FF crew is a little busier this summer, so we all split off after pizza and the Barnett 5 headed home.

Janel was going to play golf with me on Saturday (don't worry, I'll explain since this occurs about as frequently as Haley's Comet) so she wanted to hit some practice balls in the yard. The kids all are starting to get into golf, and Evan had some new clubs to test out as well. So Janel, then Evan, then Carly with her own bag and hand-me-down Snoopy clubs, then Ally all had some time at the Barnett practice range while those not playing made sno-cones. Janel's warm up was to get her ready for The Clark Foundation annual golf outing. My brother Brad and a few of my cousins work their tails off to put together 3 tournaments a year (bowling, golf and cornhole) that provide a great reason for our family and friends to get together but also a great way to raise money for local charities (see www.theclarkfoundation.com). We also honor someone each year at the golf tournament, and this year's honoree was Janel's Mom Marcy. No worthier honoree because not only was Marcy a great person, but she loved her golf. I still remember being surprised at her viewing and funeral how many ladies I met who said they knew Marcy from playing golf with her at Walnut Grove.

Here is the board I put together with some pictures of Marcy:
My typical foursome for the outing is my brother-in-law Bunk, his Dad (Dean) and my Dad, and we always have a great time playing and harassing each other. However, because Dean recently had knee surgery, we had an opening and who better to fill in than Janel since we were honoring Marcy. Like her Mom, Janel loves golf - she just never gets to play - so we loaded up the kids Saturday morning and headed for Canal Winchester. Of course we got there and everyone was excited to see the kids. In a short period of time they were able to give my Dad his Father's Day cards and present...

They were able to get their picture with my Mom and her sisters Mary, Linda, Cathy, Therese and sister-in-law Becky who had orange golf shirts with Ally's Army stitched on them...
And Ally was able to hit some practice balls with Mommy, Evan was able to hit some putts with Daddy, and Carly had a grand time running around the practice green with the flag like she was a cheerleader at a Wright State game. As Janel & I headed out to the course, the kids left to go play with their cousins Bella and Ben (special thanks to my sister Jessica who's pregnant and my sister Tara who had been up all night at a Relay for Life walk who took the kids so that Janel and I could play for the first time in years!).

As for the golf, not only did we have a blast playing together, we actually scored pretty darn good (-13)! I always enjoy getting to play with my Dad Father's Day weekend, and it was especially fun having Janel with me this year. You too Bunk :) And I think Janel wearing Marcy's golf shoes worked because her putter was on fire and got several of our birdies! Here's the fearsome foursome that tore up the Westchester Golf Club:
What better way to celebrate Father's Day than a 9:00 a.m. make-up softball game you ask? How about not have the other #%$ team show up!! Perhaps I should explain. Several of our neighbors went together and formed a co-ed softball team affectionately called the Booher Carpet squares. One of our rain-outs was scheduled for today, Father's Day, 9:00 a.m. We figured we'd play and then all go to breakfast and the other team didn't even have the courtesy to show. So as always we make lemonade out of lemons and took a little BP and then went to Bob Evan's. Still a good morning because the fastest way to a Barnett man's heart is a good breakfast, just ask my Dad. The rest of the day was pretty much spent in the water hanging out at the Stonehill pool (while Carly napped and Janel got dinner ready) and then with Janel's family at the Fox Hill Pool. The perfect place to end the day was up at Fox Hill Pool, especially since Janel & her sister Melissa did all of the cooking while the Dad's - Bob aka "Pa", my brother-in-law Gavin, and I - got to play with the kids in the pool and Janel's Grandmother Ruth watched from the shade. Pa had picked up some new water guns which were a huge hit with kids. Even Carly picked up pretty quickly on how to drench her brother Evan with water! Here's Evan (with Ally peeking out from the hot tub) feeling compelled to take his water gun for a ride down the slide...
The Dads and kids taking a quick break from playing in the pool for a picture...
And a cute picture of Carly quietly playing with Evan's Pokemon cards at a table by herself (?)Planned or unplanned, the meal Janel and Melissa cooked included 3 of my favorites: a cola brine chicken that Janel grills up and is outstanding, Melissa's corn casserole and a dessert that included a chocolate chip cookie. Not a bad day at all to be a Dad. After we packed up Fox Hill, we came home and I got to receive my Father's Day gifts. I got multiple great cards from all the kids, including one from Ally that said:
And one from Evan that had a picture of me:
I asked him what it was and he said "It's a picture of you looking at this card". How funny. He also drew a picture of he and I playing lego star wars, but my favorite thing from him wasn't from today. When I was looking at some of the things he brought home from school at year-end, there was a paper that they had to answer what they wanted to be when they grew up, and he simply wrote "a Dad", and I was thinking about that today. I also loved when right before bed Carly came up to me and said, "Daddy, could you...cuddle with me because...it's Fathers day and that's what I want for Fathers day."

Definitely one of those days and weekends you wish you could freeze in time. But most importantly, what a difference in this weekend from last year. Other than a shiny bald head that Ally now seems to want to show off everywhere and avoid covering with a hat due to the heat, she seemed like a perfectly normal kid this weekend. Playing with cousins and friends (including helping a stray dog find its home and going so far as to bike around the neighborhood and tape signs with its picture up) swimming non-stop for what seems like two straight weeks, and just being silly like an 8 year old girl is supposed to, I do feel somewhat of a sense of normalcy returning this Father's day. Once again, not a bad day at all to be a Dad...

Thursday, June 17, 2010

May 22nd pictures..Finally!

If you ever had an inkling to watch one of my slideshows, this should be the one! This is a compilation of photos that I have received from our Ally's Army Battles Cancer event that we held back on May 22nd. Many of the pictures were taken by professional (and awesome) photographer and friend Erin Cobb. She captures little details perfectly. And so many pictures of Ally! Other pictures were sent to me by friends. Thank you all.

After watching it, I am filled with pride for my daughter. I am proud of my Dad. And I am proud of my slideshow. Enjoy watching it!
PS: The song used in the background is a piano compilation that I fell in love with last fall. Many nights while writing this blog, this was the music that you could hear coming out of my office. It has inspired me countless times and is the only song I considered using to show these proud pictures and celebrating the culmination of our year. The artist is named Jon Schmidt.


video

Tuesday, June 15, 2010

Happy

I might start to sound like a broken record, but I am sure you all can share in my joy. I am scared to even say it, but Ally is doing amazingly well. She is so happy this week...doing that cooking camp that she has been waiting and waiting for. Going to the pool. Playing with her buddy Madison all the time, every day. She is just so happy. Jerad and I are noticing a definite difference in her. She has obviously been on delays before, and she normally feels better during those times. But there is something a little different now. Now, she is feeling well but also acting like a kid again. I don't really know how to describe it other than she is acting silly, making silly voices, goofing off with her friends, and really playing with her brother and sister. She is having numerous times a day where she busts out with a belly laugh. We have seen an Ally that feels pretty good, Yes. But we have really not had the chance to see the "old Ally" as she was before leukemia stole a part of her childhood. I don't know what to say other than we are overflowing with gratitude and joy. We are saying many many prayers that her cancer never returns. We are praying that this upcoming maintenance phase is not too hard on her..I keep hearing that it takes the docs a few months to figure it out. We will continue to be patient and strong.

A lot of people have been asking about me (thanks). People can see it on my face that I feel better. I must have looked quite anxious there for a while. Lots of people have said things to me, anyway. And yes, I am feeling better and starting to do some more "normal" things that I hadn't done in a very long time. I saw a movie, organized my kids artwork from the past school year, shopping, little things that I could never seem to get to. And the really really big news is that I got to go back to work today. I have been working at home all the time for the past year. Barely keeping my head above water...getting stuff done at the last hour before a deadline. Mostly working at night after the kids are tucked into bed, but really I was tired too and wanted to go to bed. Today, TODAY, I went to my office. Sat at my little computer and did my (very small) payroll job. I like to work. Most people probably wonder why in the world I do it, but I truly like to do it. I like to have something my own. I like to make some small contribution to our family business. I like to enter into the adult world, if even for a few short hours a week. I like to have my own paycheck. So this small step made me very happy today too.

I have been spending a huge amount of my time doing fun stuff with the kids lately. (as it should be) But I am also working on a slideshow of all the pictures from the Ally's Army Battles Cancer event. It will be really cool if I can EVER figure out how to insert a portrait-oriented picture into my slideshow in Photoshop Elements. (anyone? anyone?) I have some great pictures to share, so hopefully I get this thing done soon. It all just takes time. Luckily I have a little more of that lately.

Saying extra prayers for all of our hospital family tonight. Especially Skye, Lincoln, and Katie. I feel guilty even saying Ally is doing well when my heart is actually breaking for some of the other kids.

Sunday, June 13, 2010

Thanks Joanne!!


Greg decided to run with her towards the end of the race...


Another member of Ally's Army....doing great things on her behalf!!! A good friend of ours, Joanne George, went all the way to San Diego to run the Team in Training Marathon in honor of Ally. Joanne and Greg have been friends of ours for a long time...Greg studied in Europe with Jerad for a semester and they became fast friends. The greatest thing about this story is that Joanne has overcome some pretty serious medical issues herself. After having brain surgery, I wasn't sure if she would be up to running again....at least not 13 miles...but just like Ally she persevered through it all and got back into her training. Her and Greg raised thousands of dollars for LLS and travelled across the country for her race. (and it was her birthday too) We just can't thank you enough for doing this for our daughter. We have so many kind members of the Army out there doing so many good things in her name. We love you Jo! And Greg.

Saturday, June 12, 2010

Summer

Ally continues to do amazingly well and we are really enjoying summer. Every day is fun from morning until night. As I tucked her in tonight, I said to her...isn't it nice to not have to be sick all the time anymore? She smiled. She deserves every single fun thing that comes her way. Our neighbors set off fireworks for hours tonight and we just sat and watched them all from the driveway. The kids loved it and were catching lightning bugs and having the best time. Just one of those perfect summer nights that I would like to bottle up and put into my "heaven" someday. (minus all the yelling for the kids to back away from the fireworks..hee hee)

We also went to a graduation party for a friend of ours, Megan, who has also babysat for us. She has babysat for us for a couple years. I didn't even know it, until Ally was diagnosed, but Megan also had ALL when she was a little girl. I remember being amazed to learn that because Megan is just the sweetest, most full of life girl. She is also a STATE CHAMPION on the balance beam. So she had a scrapbook there for all the guests to sign and Ally had signed it. My friends, the Boohers, said go look at what Ally wrote to Megan. She wrote "Megan, you must be really strong. Like me. Love, Ally" It was the sweetest thing. I know we all know that she is strong, but I never knew that she thought of herself as strong. But she does. And she is. And I continue to be proud of my Ally.

Thursday, June 10, 2010

Maintenance Delay....

And thus it wasn't meant to be. Yet. We got word today that Ally's ANC was not high enough to enter into Maintenance yet. It is very frustrating to me, because her ANC had been high about two weeks ago. And the doctor told me the last two chemos that he gave her should not lower her counts anymore. I thought we were home free. But apparently, the chemo they gave her at the beginning of the cycle is still doing what it is supposed to. Her bone marrow is suppressed and she is taking a little while to bounce back. I was told that this is very common, and I have seen others who have gone before us have this exact problem. Especially, in her case, with getting the double dose of chemo and radiation. So, sigh. I don't know what to say. I wanted to move on...I wanted to plan a vacation and get the ball rolling on a few things, but we will wait. It is going to take them a little while to regulate her "at home" chemo anyway, and I am planning on that.

Instead of a spinal tap tomorrow, she will be going to the pool. The only thing that Ally had asked to do for pretty much the whole summer was this cooking camp at Miami Valley School. And it is next week. When her spinal tap should be rescheduled for. Ugh. She had told Dr B about it. Thankfully, he is working around this wish of hers. Her spinal tap has been moved to June 22 now. She will have next week free to do the camp.

Really, Ally is feeling great and that is what matters. Even with the lower ANC (410). She is swimming all day long....the last kid to leave the pool. She is playing baseball with the neighbors at night. Helping me in my garden. Fighting with her brother. It is all good. We even went to the zoo the other day (Thank you to A Kid Again for sponsoring this event for the kids) The closed the zoo down just so the "sick" kids could have it to themselves. I never thought I would be that family, but I am and we enjoyed the crowd free treat.

I wanted to share yet another video on here. This video was played at the fundraiser party that we had for LLS. It is a day in the life of Ally Barnett. It is Ally starting out at home...taking her meds....heading down to Children's...and getting her port accessed and chemo. She walks over to visit her friend Amanda in the Almost Home Unit. This video was created by Joel Menken, a very creative friend of mine from church. I do have to mention that this is a very good day for Ally. No pain, no complaints, just a very typical chemo infusion. This does not show the months of apprehension that goes along with getting stuck with the needle. This does not show the nasty side effects that the chemo can bring on. There are no leg shots. This does not show the fear in my eyes or hers. It was made just a few weeks ago. We were seasoned veterans at this point. But it does give people a bit of a realization of what she does now and will continue to do for 16 more months.

Click here to watch Ally at the hospital....

http://www.youtube.com/watch?v=4Hl4xlSg79A


Please say an extra prayer for a fellow leukemia fighter, Kourageous Kate, who is currently in ICU and in very critical condition. My thoughts all day for the last few days have centered around her and her family. Keep fighting Katie....

Wednesday, June 9, 2010

Last Day of School

Yesterday was the last day of school. I know it is always hard to believe for parents, but for me it was double as hard this year. So now I guess I have a third grader and a first grader (and a little preschooler.) It makes me feel old. Third grade sounds particularly old to me and I wonder how Ally will do next year. Will she pick right up? I believe she missed over half of her second grade year. She did have a tutor, but a lot of those days that she missed she was also too sick for tutoring. She missed most of the fall. All of January. Most of March. I think she only took a few spelling tests all year. How do you get all that back? You don't. I guess this is what the doctors were referring to when they told me she needs to go to school and be as normal as she can. Because the time comes when you have to live again and reenter back into society and events, etc. We are ready. That is for certain. She came home from school on Monday and was talking about signing up for cheerleading....and/or soccer. And her little legs can't quite handle it, but how can I stop her? Maybe it will help her build up some endurance. We will see how she feels through this maintenance phase. Some people have told me it is very bearable, but there are others that have told me it is just as bad. I guess we just have to see how it treats Miss Ally.

The amazing part about the last day of school for me was that Ally chose to ride the bus in the morning to school. Pick up at 7:02am. She had not done this since last September..the first weeks of school. She finally felt well enough to rise out of bed at that early hour. Most of the year we let her sleep a little longer. It is quite hard to wake up a chemotherapy patient. Especially one that is up multiple times every single night. But at 6:30, Jerad walked into her room and she sprang out of bed. Ready to go. I had to get a picture of her doing this.
There she goes...
With all the other kids, just as I like it.
Equal time for Evan and his busstop buddy, Regan.
Can't believe he is thru Kindergarten
As I type this in the morning (usually I am up late at night!) my three kids are down in the basement. The first day of summer is not as we had planned at the pool. It is cloudy and raining. Guess what? They are playing school! Noone is happier about summer break than little Carly. She is so happy to have her brother and sister here to play with her. She is cracking me up. I already hear a few fights brewing. But if I start to get tense, I just remember what I was doing when my summer started last year. It was not fun. There were no end of school celebrations like last night when we took them all to see a movie. Already this summer is looking up. We have made plans. Something we typically were unable to do.

So, even though we are in "maintenance" starting Friday, it is not done. I think some people assume that she is done with treatment...we have gotten a lot of cards that say that. (we must have done too much celebrating!) Unfortunately, she still has 16 months left. Starting Friday she goes back into the hospital. Grandma comes down for yet another day of babysitting. We start the phase with another Spinal Tap. I also think she will get her monthly antibiotic infusion into her port. She will get a push of Vincristin chemo. She will start five more days of steroids. She was also start a new medication regimen that will keep me on my toes. Chemo every day (6-MP)..and methotrexate pills once a week. The administration of her chemo will now fall onto Jerad and I. This is a task I will gladly take on to avoid all the trips down 35 to the hospital. Starting this phase does bring about fear for us. Although the heavy dose chemo has hurt her so much, it has also killed those leukemia cells. Without the big gun chemo, what will happen? I guess this is why she takes a little chemo every day. I have to trust the doctors. I must trust God. And I put all my hope into the premise that we will never have to walk down the horrible road again. Please feel free to join me in fervent prayer for this. We still need prayers from our Army.

Thank you to all of you who are still following our story. Some people have asked if I will continue the blog. Yes!!! We are far from done. My hope is that this blog will involve less stories of medical information and/or treatments and more stories about a family that survived it all...and can find happiness in every single simple thing of life.

Monday, June 7, 2010

Video Link

http://www.youtube.com/watch?v=eIZO37A0w0o

Here is the link of my Dad winning Man of the Year as I mentioned in the below blog post. I tried to make things easy and use my Flip Recorder. It actually made it harder and I could not upload straight to my blog. So anyway, here is ceremony and his words.......click on the link above.

Sunday, June 6, 2010

Man of the Year 2010...Bob Mills

He did it! As if you had any doubt....but Dad was officially awarded the LLS Dayton Man of the Year on Friday night at the Schuster. It was a great event for a great cause. Tons of people attended the event and lots and lots of money was raised. I was particularly impressed with the number of people who bought live auction items, only to donate them back to the cause in order to be auctioned off again. I was also very impressed with the girl of the year, Maria, who the Men of the Year were raising money on behalf of. Her family stood up and bravely told their story to the entire audience. It takes some guts to be able to share such an emotional trial with a room full of strangers. They seemed to be such a nice family and such an inspiration to me. I want to be there, on the other side, telling our story and being cured and done with this disease.

I was very proud of my Dad. Proud of what he has done in raising money for the Leukemia and Lymphoma Society. Proud of what he has done to raise awareness about cancer in general and in particular pediatric cancer...something most people never talk about. I was proud as he talked about the other kids that had lost their battle, namely Ashley and Davey who he was always thinking about. Most importantly, I was proud of what he has done to honor his granddaughter. Years and years from now she will realize that he did this for HER and to prevent the suffering of other kids. She will know that someone stepped up to the plate and said this is not OK...please end the suffering for these kids. And he did this all in the wake of his own personal tragedy. We have barely had time to deal with the grief for Mom and the sadness for Ally, but the time to react was now. While most people would have holed up in their homes and collapsed under the weight of it all, he soared to new heights. And, as I always say, MADE A DIFFERENCE.

Rather than me rambling on about such an amazing act, I will just put the video out here of him being named Man of the Year 2010. As he was collecting his award, I was trying to hold the video camera and also keep from crying and shaking.....(will post later...computer problem)

Thanks Dad for teaching me and so many other people the definition of the word generous. And compassionate. And love. And persistance. And on and on and on....

Thursday, June 3, 2010

More blood....

We had yet another blood transfusion today. Sort of unexpected...but we were wondering if she would need it. She started suffering headaches at school this morning. Another finger prick indicated her hemoglobin was at 7.5....the other day she was 7.1 and they tried to hold off. But it wasn't meant to be. After six hours at the hospital today (with her little sister there for about 3 of them!) she got another bag of blood. She "pinked up" quite nicely and I am kind of hoping that might be the last bag of blood she takes from the blood supply. But chances are she may need it again.

Afterwards, we celebrated (again) her last chemo by going to the Greene and getting a manicure with her BFF Madison. The Mommies even got one too in preparation for the big Man of the Year party at the Schuster Center Friday night. It was a very nice treat. When we got home....she said...Mommy, we should go do that every week. I said "don't tell your Pa or he will definitely make sure that happens."

Dayton Children's put together a little video of the unveiling of the Mills Family Lounge on the Hemoc floor. Since they spent the time doing it, I am going to cheat and use their video...saves me some editing time. I still want to post more on it too. Trying to save up my blog material...

Click the link to see a little clip....It was on the news the other night too...just a quick blurb.
http://www.youtube.com/watch?v=6rjvOFKA6bo

And thank you blood donors and the Community Blood Center. We are grateful.

Wednesday, June 2, 2010

Intense Chemo Over Celebration.

So yesterday was a big day for Ally. She got her last chemo of the "intense" phase of her treatment. We have been waiting for this day for a long time. Before anyone gets too excited, we do have a full 16 months more of chemo to come. (yuck) But it should be a lighter chemo. She will take her chemo at home mostly, via pills and liquids and steriods (double yuck). She will still get a spinal tap every three months (much better) and her port will only get accessed and chemo given that way once a month. This=way less hospital visits. Which means we should be able to schedule more things....leave the city once in a while....breathe a little bit. I am hoping it means that we are not constantly scrambling like we have done for the past year. And most importantly, she will feel better.

I do feel like the fog is lifting a little. I know I feel better. Those that see me frequently, I think they can hear it in my voice. I am finding myself wanting to do more things...like I am packing every little activity into every last day. You want to go to the pool? Lets go. You want to go fishing? Sure, lets have a later bedtime. Those kinds of things. I have learned that you never know what the next day will bring. You have to live for NOW. Not next week, or next month, but NOW. I am doing my part anyway. I learned my lesson the hard way.

And because I have to make everything a big deal around here, we decided a little celebration was in order. I know we cannot say "last chemo" and some of the neighbors were asking about the signs??...how do you say "lighter chemo" we are celebrating "lighter chemo" Baby steps, I guess. We just had to mark the occasion for her. Evan and I had decided to decorate her room. Carly and I went and got cupcakes. And our friends and family, all on their own, decided to decorate the front porch. And we all hopped out and surprised her with Ally's Army shirts when she pulled in from the hospital. The cute little look on her face says it all. Thank you everybody for helping to make it special for her. She is lucky to have such caring people around her.

I don't know why I have so many pictures, but I do...so I will share.

Balloons!

The porch signs...
Here she is right out of the car...we kept it a secret!
She was happy in her own little quiet Ally Barnett way. I love this smile.

Some of the army..
more balloons all over her bed....
Evan made a cute poster (and silly bands were attached!)