Friday, June 24, 2011

First summer meet.

Won her heat. Twice. She's getting stronger!

Brother and cousin did too. It was a fun (but cold) night!

- Posted using BlogPress from my iPhone

Location:Idle Hour Swim Club

Wednesday, June 22, 2011

Save the Date: Sept 17

Ally seems to be doing a little better with the belly pain. She still finds a way to wake up pretty much every night (in the middle of the night) in pain. But her days are going really well and she is enjoying her summer. That will all probably be changed after she goes for chemo next week. We just get through it and then it comes on again. I am very proud to say she will be competing in her first "summer" swim meet tomorrow night (if the weather holds out). Summer swim seems to be more her speed. She is doing really well. Her brother Evan is also competing. He has done a lot of sports in his life as of yet, but I really think he is most excited about this meet coming up...more than I have ever seen with a soccer game/baseball game etc. He is also doing well....we will see how he does in the actual racing events.

Thank you for all of the kind comments about Ally being the hero. She deserves it.

I am going to gather a bit more information, but I wanted to put a Save The Date out here for anyone who wants to join us for a very special walk we are doing this year. It is the first annual Curesearch walk. Curesearch is the org that basically writes the protocols for all of the kids who have cancer. They are responsible for the actual protocol and studies that Ally is in. So the walk is very special to me because
1) It is just for the kids (unlike the LLS one we do that is for all with blood cancers)
2) It is just for cancer
3) It is the organization that means the most to Ally's drs, nurses, etc and they will be there!
4) All of Ally's friends from the hospital have formed teams and we will all be together.

It is very coincidental, but Ally's last day of treatment is scheduled to be Sept 16. The walk is going to be held on the morning of Sept 17. You all might have to carry me as I will be an emotional wreck.

It is crazy that these two dates coincide. But it will be a very special time for my whole family so hoping you will join us for the walk. Again, I will get our webpage set up for sign ups, etc and post out here soon!

Maybe we will have to follow it with a giant bonfire and burn all of Ally's medical supplies. I saw someone else do that. (oh but I am probably way too superstitious to do that, huh)

I found some pictures from our last event out on the Dayton Daily News website so thought I would post a few more. These were taken by their reporter at the event.

Monday, June 13, 2011

Ally Barnett-LLS Honored Hero

So this is going way back. 10 years ago. The start of little baby Ally. I was pregnant with her (didn't know she was a "her" either) and this song came on the radio. I am sure everyone has heard it because it has been overplayed and used in cheesey ways now for about the full 10 years. But anyway, it was called "I hope you dance" by Lee Ann Womack. And it just struck a chord with me. I remember telling my friends about it at the time I was pregnant and my friend Jenny Robbins even got me a "I hope you dance" book for my birthday that year. And it still sits in Ally's room. And the messages still apply.

Somehow before I ever held my little baby girl in my arms...I had this strong desire for her to be passionate about something. I remember thinking if I can just get these messages across to my children, then I will have done my job as a mother.

Yes, they need to learn other to potty, how to go to school, how to play nice, how to share....but I just wanted my kids to have some sense of conviction. A sense of wonder. I didn't want them to be just "good" at something, but to be passionate about something. To make a difference. It was just so strong in my heart that even when Ally got her leukemia....well I almost thought this is somehow meant to be. It was horrible, I hated every minute of it, still do!, but somehow this was our chance to be brave and tell our story. The good, the bad, and the ugly. And show just how passionate we are about never wanting this to happen to anyone else.

So the day of the LLS event the song came on the radio. I haven't heard it in a long time. But I don't think it happened by chance. I am strong believer that everything happens for a reason. The song was playing for me. So I was sitting in my car...and listening to the lyrics...but with a whole new set of ears.

"I hope you never fear those mountains in the distance.
Never settle for the path of least resistance.
Livin might mean takin' chances but they're worth takin
Loving might be a mistake but it's worth making"

Yea. Yea. That is what I meant to say to you so many times but didn't.

"Whenever one door closes I hope one more opens.
PROMISE me you will give FAITH a fighting chance"

And yes. Faith got us through. Just barely, but it did.

"Time is a wheel in constant motion always rolling us along. Tell me who wants to look back on their years and wonder where those years have gone. I hope you dance"

"And when you get the choice to sit it out or dance.....I hope you dance"

And dance we did. It would have been much easier to sit on our living room sofas and decline the chance to the honored hero. There would have been many less events to go to over the last ten weeks and much less preparing our story to be told (twice). It would have been infinitely easier to sit in the crowd and watch everyone else speak instead of getting up in front of 500(!) people at the Schuster Center. And tell a story that could bring me to my knees in tears if I let it.

But no. I wanted my daughter to see the passion. The strong desire I have to tell our story...and yes not leave out the ugly parts...not gloss it over for all the world to see. Not paint a pretty picture. But to see what it is like to live with leukemia. And also to see what it is like to SURVIVE. It was not easy. It was one of the harder things I have ever done. I told Jerad that I was more nervous than my wedding day. But the strength came through me and I somehow delivered my message. Maybe a little long, but I can't really collapse two years into a three minute deal. (I do think I was only about seven though) A few friends asked me to post it. I am not asking that you watch it unless you have extra time and extra desire! This post is long enough.

The most important part of the night for me was recognizing the most humble Dr. Emmett Broxson who was sitting in the crowd with a few of Ally's nurses and another of her Drs. (Dr Dole) The man deserves every good thing that ever comes to him as he spends his life helping little kids fight cancer. Every. Day. And they don't always win. But he keeps fighting. So it was my sincere joy when he walked up on stage with us and let the crowd recognize him for all he has done.

Here is the Dad spoke right before me. All about his fundraising efforts last year and how he became the 2010 Man of the Year... so it starts at the point that introduces me.

Again...feel free to bypass...just putting this out for a few people who specifically asked for it!

And here are some pictures. (photos courtesy of my brother in law Bunk you Bunkie)

Ally with her Pa
And Grandma Barnett
And Dr B...wearing her Emily's Beads of Courage proudly.
The poster of her story at the event.....

Pa pointing out Evan's tie (first time EVER!)

Telling our story

She quietly stands by while we tell all the details....
Dr B comes up on stage with us! So grateful....(brought me to tears)
True smiles from them both. They have a special relationship...
Happy to get her special flowers and gift....
Again with Dr B...darnit, Ally's eyes closed.
With Miss Vickie (who nominate her to be the hero and is also a lymphoma survivor)

And with the 2011 Man of year: Matt Graybill and Woman of Year: Sallie Taylor. Who both kindly mentioned Ally as a source of inspiration to get them through the campaign. We are thankful there are people willing to do this!

And Ally girl....I hope you know how sad your parents and grandparents and friends and family are that you have had to battle through disease at such a young age. I hope you know that we would do anything to take it away from you. You are a honored hero...not just for one night or one campaign or to one person....but to many. I know someday down the road this experience will make you more compassionate, more kind, and more giving. Everything that I want you to be. I hope you dance.......

Monday, June 6, 2011

Poor Ally.....

I will start off this post by saying that Ally's spinal fluid came back clear. No cancer cells. Her ANC was hovering around 2200 and her bloodwork looked ok. Dr B did not change any meds for her. We are soo soo happy and relieved at this news.

However, Ally had one of the roughest days at the hospital yet. It seemed like everything that could go wrong did. It started when they accessed her port which is located in her chest. They always do this first....and then start her on a bolus of IV fluids before her spinal. I was not at the hospital yet for this, but apparently the first nurse went in with the needle to the chest and missed her port. Of course, this results in crying and screaming because it hurts. She called another nurse in....and that nurse tried to access her port. Also failing to get to the right spot and unable to get a blood draw (that is how they know they are "in" there....they pull back on the syringe and blood comes up). Ahhhhh. At this point, she was crawling out of her skin. Poor Ally and poor Jerad who said the entire fourth floor could hear her yelling. They finally called in her normal nurse, Susan, who tried a third time and had to wiggle around a a bit (also painful) but finally got it. Makes me so sad, especially when Jerad said she was crying for Mommy. :( I was getting Carly off to school and got there right after.

After she settles back down and gets her fluids, Dr B says it is time to go for the spinal. Early too. They take her into the procedure room and give her some meds to sedate her a bit. She really never goes to sleep....but she also never remembers the spinals. Which is good...because it took three times to get the spinal too!!! Wow it was super hard to watch. Every time he even touched her she would yell and he kept poking around with the needle between her vertebrae trying to get the fluid. Except no fluid was coming (except blood, of course) After two tries with her laying down, they finally got a few people to sort of hold her up and she laid on a bedside table. So she was kinda sitting this time. He eventually got it, but she was so miserable and in pain and I could not handle it well. I ended up silently crying through the whole thing. Looking at the bloody mess on the table and praying the fluid would just cooperate and we could be done with it. Jerad says...well you can get up in front of 500 people and tell our entire story, but you can't make it through the spinal. On the contrary, he can't talk about it in front of anyone, but stays strong during the procedure. I guess you could say we compliment each other well. :)

After getting her IV antibiotic and some chemo, we got to go home later that day. I asked her about it on the car ride home and she didn't remember the spinal at all. Thank God for verced. She does remember the port mishaps. She kept a heating pad on it for about three days. We did several doses of vicodin. She missed school Wed, Thurs, and part of Friday. Unfortunately, she is still really suffering from belly pain and also just finished up the evil steroids for the month. I hope she turns the corner here soon because there is swimming to be done and summer fun to be had. You can just tell by looking at her that she is not feeling so hot.

The next night (Thursday) she got to be the honored hero at the LLS Man/Woman of the Year event at the Schuster. It turned out to be a beautiful and moving night, so I think I will save that story for next time. But a hero is exactly what she is.