Not again.

Well I asked you all to pray for Bill, thinking he had weeks left to live. I had no idea whatsoever that his time was so short. He passed away last night....just hours after I mentioned it on the blog. He was an amazing man and I am so glad to have known him. He was one of those people that was just so full of life that it is hard to imagine him gone. He could fix anything, give you directions to anywhere, tell you anything you wanted to know about fast cars and/or boats....and he loved his family and grandchildren so much and always had a proud look on his face when you talked to him about it. He was too young. I last saw him when I was last in Cleveland...at the Cleveland Clinic with my Mom. My mom was in a crazy 13 hour long surgery to remove her bladder and he just drove down to the hospital and sat with me in the lobby with Lisa...and they helped me pass the time and told me it would all be ok. Well today and everyday I am just sick of cancer. Sick of what it does to so many people that I know. Sick of what it did to my mom. And Bill. Even my Dad had cancer (but survived). My Uncle. My Aunt. And now my daughter. And 100's of other people that I could personally list off right now. Why can't they find a cure? When? Why aren't people up in arms over this? Oh I know. Because they are tired. Of fighting cancer.

On Friday, I am heading to Cleveland to see my friend Lisa. I wish I could take it away from her, but I can't. As is the case with everything, I rely on my one motto that gets me through most days: at least we have each other. Friends and family are what gets us through.

Rest in Peace Captain Bill. I know you are pain free now and enjoying every minute of heaven. There is no speed limit there. We love you.

Blah Monday

Ally continued through the night and most of the day today with belly pain. I really don't know why this happens...I guess just all of the medications. She didn't go to school, but by mid-afternoon it was almost as if a light switch went off and all the sudden she felt better. I knew things were good when I suggested having a tea party with Carly and she went upstairs and dressed about ten of her stuffed animals for the "party". I love that. So much of Ally is adult-like....she has to deal with so many "big things" that I find myself even treating her like an adult half the time. I shouldn't forget that she is eight. So today we happily made all kinds of tea concoctions out of grape juice, apple juice, and cranberry juice. Maybe I got a few calories into her because she is still NOT EATING. I keep threatening her with the appetite stimulant medication, but nothing makes her eat.
We have been furiously working on a project for school for about two weeks now. She is presenting an oral report/poster on Egypt on Wednesday and I think she has had fun with it. She is anxious to go to school tomorrow to hopefully see some other kids present their countries. It is always good when she has something to look forward to. And by this evening, I actually heard her singing in the shower. I know it is a little thing, but I seriously NEVER get tired of the little things anymore. I am so grateful for moments like that.

Tonight I am sad for my college roommate and wonderful friend Lisa. Her mother died of cancer about nine years ago. And now her father is battling a brain tumor and has very little time left. I cannot fathom losing both my parents, not at our age...or really ever. Like me, she also blogs about her experience. And she is a beautiful, beautiful writer. (Her degree was in journalism). Say a prayer for her Dad Bill...and for her. Her blog address is here if you are interested in following along. They could use all the support that they can get.

http://twelvefooters.blogspot.com/

WSU Weekend (lots of pictures!)

Saturday went really well for us. I was a little worried when Ally was up in the middle of the night with leg pain and belly pain. But she was a real trooper and had such a busy day! She started out the day by making a snow fort in the front yard, going to her brother's basketball game, then had her whole event at Wright State (lots of pictures below), followed up by hanging out with her ENTIRE family from Jerad's side at the hotel Saturday night. Whew. I don't know too many kids who have a schedule like that following a day full of chemo and getting blood!
The Wright State event was very very nice. They planned it out so well...pink balloons and streamers decorating the arena, they made all five of us pink Ally's Army jerseys with our names on the back, the team even wore pink socks and special warm-ups. A section of the arena turned orange for the game...as we had 50 Ally's Army supporters there in their orange t-shirts. Thank you so so much to all of you who took time out of your Saturday afternoon to show support for our girl. Things like this are very encouraging to her and honestly she deserves any encouragement that she can get. She walks a tough line on a lot of days....and sees more pain than anyone should ever have to...so it is always nice when that is recognized and she gets a little boost to keep her pushing forward.

At halftime, Coach Williams presented her with a special signed and decorated ball and dedicated the game to Ally. She also mentioned that the Butler coach is battling breast cancer and asked her to say something to Ally. Which she did by whispering to her "you look much better bald than I ever did" as she walked off the court to talk to her team. You can see in the picture that the ball looks awesome and I know Ally was really happy to show it off to her friends. I really want to thank Bridgette Williams for doing this for Ally...it was all her idea and her work in planning and organizing. We are blessed to have so many people supporting us as we go through this trying time. Even nine months into it....there are still those people who have not forgotten we are in the midst of fighting the fight against leukemia.




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Ally is right in the middle of this!

Amazingly enough, Jerad's whole family was in town (even his sister and family who live in Florida)...this is really a quite rare occurrence so at Mom/Grandma's request we took next year's Christmas card picture. We were even color coordinated. Thank you to all 24 of them for making it! They stayed at a local hotel and Ally even got in the water to swim, which was nice to see.Sunday was not as good of a day for sweet Ally. I felt bad as she suffered most of the day with belly pain and spent the day on the couch. We were probably partly paying the price for over-doing it on Saturday. And some of it is just those nasty chemotherapy drugs. I know they are saving her, but I hate when they hurt her in the process. I am hoping she starts feeling better again soon. She has lost quite a bit of weight again, and failed to eat much of anything again today.

Thanks for praying for all those fighting cancer and all the families that are right there supporting their loved ones through it. Please pray for strength for all of them.

Note for WSU game

Note: To any of the Army that are attending the WSU Women's Game Saturday at 3pm...they will have tickets reserved for you at the ticket office. Just tell them you are with Ally's Army and I believe you just get in. They also said that anyone is welcome to speak at halftime and offer Ally any encouraging words. I am not sure what that would be exactly, but the offer is out there. Also: Wear your Ally's Army t-shirts!

We had a decent day at the hospital. Ally's bloodwork came back okay such that she was able to get both doses of chemo today. She has to have an ANC above 750 and her liver enzymes have to be in check too...or else they hold it. I was happy that the liver was fine and her ANC was 2400! Wow! This must explain why she has been feeling so good. So, of course, they upped the dose this time and such that the ANC should go lower. We did have to get yet another blood transfusion today as her Hemoglobin was pretty low. I didn't want to have to go back to the hospital next week, so we just took care of it today. Thank you blood donors. I need to add it up, but I bet Ally has used 12-15 bags of blood in the last almost nine months. Barring any unforeseen illness, Ally is off until March 1. 10 days. Hoping the leg/jaw/joint pain stays away this time! Otherwise, Dr B said we could page him over the weekend...so caring, that man. I must mention again that we just love Dr Broxson...and I also love to tell him when Ally is doing good. I think it truly makes him happy.

A funny story about Carly that I must share. She had some pancake syrup somehow matted into her hair and stuck to her neck. I started to brush her hair this morning and caused her all kinds of pain. She busted out crying and then started saying "my port! my port! my port is hurting" She is just two years old and thinks everybody has a port. How unique.

Thanks for all your prayers. Our friend Cory, who was in the horrible car accident 5 weeks ago today, came home today. He is a walking miracle and a testament to the power of prayer in numbers. Thanks to all who said an extra prayer for him. Tonight Ally got to give him a little hug at his fundraiser dinner.

Have a nice weekend. Hoping to have some fun pictures from the game to post soon.

Happy Birthday Mom

Ally is still doing really well...and seems very happy these days. She rode the bus both ways today (hasn't done that since maybe Sept/Oct...we had a two hour delay), she played in the snow a bit, did some homework and went to a basketball game. Besides the various medicines she takes and a few bellyaches, she was just like any other kid today. I am loving that her counts are high....but suspecting they will go down after her chemo infusion on Friday afternoon.

Thanks for the thoughts on Evan...they set him up to go to Children's on March 4th. I am still hoping it is nothing to worry about.

Tonight I am already thinking about tomorrow. Tomorrow my dear Mom would have been 61 years old. I am sad that this day is upon me...for some reason I knew it would be one of the rougher days in the "year of firsts" I hope I can hold it together for the kids. I am pretty good about keeping my emotions regarding Ally in check....but when it comes to my Mom I am very poor. Terrible. The kids have seen me cry hundreds of times about it. I am told by some wise people that this is good...that your kids should see your emotions and know how much I loved her. To stifle it would be to lie. I hope to God that is right because I don't know how else to handle it. And I miss her.

I remember last year quite clearly. She was nearing the end of her life (although we didn't know it would be quite so quickly after). She was turning 60. She spent her entire birthday at doctor's offices and also had to go to the hospital to get a blood transfusion. Ironically, this is something that I now do with Ally quite regularly. We were all waiting for her when she got back quite late and we had dinner and cake (she LOVED cake). And all the kids sang to her, but she was a little confused I remember. I actually have a little video of it that I can't bring myself to watch. So much can change in just one small year...I have had more to deal with than I hope I ever have to again in such a short period.

Oh what I would give for just a little more time. So Happy Birthday to my Mom. Somehow I think she is watching me and knows and feels my intense love for her in my heart... hoping to see some little sign of her tomorrow. A little birdie somewhere in the midst of my day....

Snowed In

Hello from snowville! We have almost two feet of snow on the ground here. We are a little ready to be done with the white stuff, although snow days to me really aren't that different than any other day with Ally home. (which is a lot of days) Ally has not been to school since last Monday-8 days...but only one of them was missed because she was ill. The rest were snow/holidays. At least she hasn't been missing anything! I do think Evan is ready to have a little more routine to his day. But with the two hour delay tomorrow...this means he is only in school for about an hour and a half. Oh, yea, and they can still cancel.

Speaking of Evan, we are having some medical issues with him now. He has a crazy stomach pain that comes and goes every few months that seems to stump everyone. He has had it for about a year. Maybe twisted bowel or something like that. We would have to do an Upper GI test to figure it out precisely...and then the only fix is surgery. They are not quite ready to go that route yet, and neither am I. But today the poor guy has to have three xrays and a pretty big blood draw out of his arm. We hold our collective breath on the blood draw, because we remember all too well the devastation that it can bring. All was fine with those things, but the Dr did hear some sort of abnormality with his heartbeat. AGGGHHHHH. Something like a murmur, but not an "innocent one" (her words) that we can ignore like Ally has. So now, we are scheduled to see a cardiologist for him. At children's medical center. Oh and he is married to one of our most favorite nurses (and people!)...Miss Sharon in the hematology clinic. Small world.

So I am trying to not get worried...I am sure it will be a minor thing....but just one more thing on top of everything else can really weigh us down. We spend enough, ENOUGH, time down there. I feel like I should get some sort of free pass with my other kids... that they should be perfectly healthy, because one parent can only handle so much. But I know the world does not work like that.

Just a quick reminder: I think we have quite a few people planning on going to that WSU Women's Basketball game on Saturday. They are honoring Ally at the game for her fight against cancer. If you can, wear your Ally's Army t-shirt if you have one. You don't need to buy tickets in advance, you can just get them at the door. I believe the game is at 3pm but will confirm that for you! We would love to see any of our Army there. I hope she is feeling okay after another dose of chemo is given to her on Friday. I pray that this one does not knock her down as much as last week!

Thanks for praying for our girl and all the other little ones that are fighting this disease!!

Happy Valentine's Day!!

Happy Valentine's Day from all the Barnetts. We are doing much better now. As I suspected, the Vincristin wore off and Ally has gone a full day now without Vicodin. She is also done with using the wheelchair. So this is good news. She has not looked good the past few days...this time you could see it on her face and I wasn't the only one that noticed. Very pale, eyelids drooping, and bloodshot eyes. I was thinking she might need a blood transfusion, but she has perked up today and looks a little better, so I think I will just wait and see at our chemo appointment on Friday. Unfortunately, the vincristin has a cumulative effect and I believe she has it almost every week until June now. I am hoping she will still be able to get around by the end of that time.

She got to enjoy a birthday party this weekend. This is something lots of kids her age do, but she has missed out on quite a few this year. I was so glad she could attend...and it was a cooking/crafting party which is perfect for her. And by tonight she was practicing her ski jumps and such on our Wii fit board...we were doing our own mini Olympics. We LOVE the Olympics! I love the human interest stories....

We also had a really nice Valentines. The kids made handmade ones (the best) and Ally made some really cute ones. Every year they get a heart shaped box of chocolates (just like I always got when I was little). We also always do a candlelight dinner with some sort of red fancy drink. We decided to make homemade heart shaped pizzas which was fun for the kids.

Star Wars Card for Evan

Elmo card and that is also Carly's big girl bed with Hello Kitty on it

The girls making the dough...

You can't resist her chubby cheeks

Turned out pretty good

Our other really big news of the weekend is that Carly spent her first night in her "Hello Kitty" big girl bed. We finally made the plunge. My other kids were in their beds right at age 2. Here is Carly 2 years and 7 months and I finally did it. I knew I should have done it back in the fall, but just couldn't handle it with everything else going on. I needed some sort of stability and a guaranteed nap. But now, she is a big girl, and she has done great. She loves it. Now I must retire my crib and changing table (weep, weep) It was purchased about 9 years ago, when I was pregnant with baby Ally. It is a little sad, indeed, but in the same sense it is nice to move onto another stage in our lives. I just signed her up for preschool in the fall too.
Last, but not least, I am making another plea out here for a couple of friends of ours. Lisa Walk (Ally's principal) and Will Hamilton (Ally's PE teacher) have taken on the huge responsibility of doing the Team in Training 1/2 marathon in honor of Ally this Spring. It will be the "Flying Pig" in Cincinnati. It is a huge time commitment on their part. They have to practice several times a week with the rest of the team...and the weather has been quite snowy around here. All of the money that they raise goes directly to the Leukemia and Lymphoma Society to further research and help all those fighting blood cancers. We are so lucky to have these friends who are willing to go the extra mile (literally) and show Ally and our whole family just how much they care. I would like to help them raise the money for the event, so I am enlisting the Army. If you would consider making a donation, there is a link here to their webpages. They both wrote specifically about how much Ally inspires them everyday on their page:

Mrs Lisa Walk:

http://pages.teamintraining.org/soh/flypig10/valleyprincipal

Mr Will Hamilton:

http://pages.teamintraining.org/soh/flypig10/whamiltykh

You can also send a check to me or to Valley Elementary School, 3601 Jonathon Dr
Beavercreek, OH 45434. It should be made payable to Leukemia and Lymphoma Society.

And thank you to both of them (and you) from the bottom of our hearts. Ally's Army will continue to make a difference....more news soon on some other events coming.