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.

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 stuff...how 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 video....my 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 Colombini...love 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.......

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.

I am back!

I am back after a wonderful weekend spent with my college roommates in Sedona Arizona! We had three straight days to just kick back, relax, hike, swim, go to the spa, eat, and chat about life in general. Wow I feel so grateful that I had the opportunity to go (thanks to my hubby!) and even more grateful that I have six lifelong friends who still long to be together. Not everyone is as fortunate in that area as I am. I personally think I hit the jackpot on that one. Here are a few of my favorite pictures from the trip....

My girls....

We had just hiked from 5000 ft to 9000 ft. Wow it was so amazing to be up so high. And there were butterflies just whizzing all around us. It was one of the most amazing spots I have ever been. And pretty much noone else was there but us.

We were so high some trees didn't have any green?

Our spa pool. Ahhhh. They delivered frozen grapes to your chair. I think that says it all.

Love this picture so much....the sunrise over the red rocks from our deck! Yes I was up super early every day because of the time change!

My friends did a very good job of keeping my mind off of things. Last Friday was the two year anniversary of Ally's diagnosis. I speak a lot to other families that are going through the journey and two years seems like a long time, but then again it doesn't. Well, last year seemed like forever, but now time seems to be flying. I cannot believe the things that I have seen, heard, and lived through since that day. Not just bad, but good too. Ally's Army has made so much good come from a bad situation. I am sharing my story with an audience of 500 or so (gulp) on Thursday night when we go to the Man of the Year final ceremony/auction, etc. We do our best to get the word out there and try to do anything to stop this disease. I think Ally's Army is like my part time job now. I'm always doing something!

Ally is not feeling so great today. She has headache. Stomachache. Ended up getting out of the pool crying at swim practice. It makes me sad. I don't know why she feels cruddy. I never do. Maybe she is just getting a bug or something. But I am a little extra nervous tonight because she is due into the hospital at 830 tomorrow (Wed) morning for her spinal tap and chemo. The procedure takes enough out of her as it is, so hopefully all goes well with her not feeling so well.

Extra prayers tonight. If all goes well, she will only have one (ONE!) more spinal tap after this one to finish out her protocol of 28 months. But I cannot even think too much about that yet.

Ally's Army hits Alabama

I wanted to post an update on Ally's project of raising money for the tornado victims in Alabama. We had a two day garage sale...well our neighborhood has about 45 homes that have the sale so we get A LOT of traffic. We cooked about 130 hotdogs and we had a nacho machine and water. We were super busy with it both days...and we ended up raising about $150 after we paid for some of the food. Here is a picture of my sister manning the sale (she is probably gonna hate me for this)
Melissa and I had to do some of the work when Ally was at school, but she did it the rest of the time.


We took the money and bought a bunch of supplies and then gave the rest of the money to help Coach Rob (swim coach) and his wife Melisa get to Alabama. They are originally from right around where the tornados hit. They ended up hauling a huge trailer stocked full of relief supplies from Beavercreek to Alabama this weekend. They sent me this picture of Rob in front of the trailer wearing his Ally's Army shirt, so I had to share.

We have had another busy weekend...starting out going to the Dayton Children's board retreat up in Columbus. Jerad is on the board of directors for the hospital (and has been since before Ally's was even diagnosed) On the second day he got up and told everybody Ally's story...and Jerad doesn't like to talk about it in public because he gets too emotional...it is usually my job....but anyway he helped to paint the picture as to how valuable the hospital is to so many. We are so lucky to have a designated children's hospital 20 minutes from our home.

We also had soccer, baseball, dance, and family pictures taken (thanks Erin). We even got to enjoy the opening weekend of Fox Hill swimming pool which the kids absolutely loved.

As you can see we stay busy all of the time...sometimes I find myself complaining that we are too busy....but I cannot complain for long. It will be two years this week since the dreaded day. How far we have come.

Ally had bloodwork done on Thursday and her ANC has creeped back up to 3600...even with Dr B increasing her chemo. I am guessing he will probably increase it again. I am waiting for him to look it over. She also has a spinal tap coming up next week. We get a bit anxious about these and ask for some extra prayers that she will do well and the fluid will remain clear. It is starting to feel like summer around here...and we have many plans to make the best of it.

Clinic Update

I apologize for not posting sooner...had a lot of people asking me what was going on and I have been neglectful with my blog! I have been busy getting ready for our neighborhood garage sale. For three years someone has been sick, first Mom then Ally...and I am continually amazed as to how much CRAP can accumulate when you are just struggling to get by. So it has been very therapeutic to get it out of my house now!

Anyway, we went down to the clinic on Friday and had a world-record two hour chemo appointment. That is super quick by our normal standards. Ally's ANC continued to be high...sitting at 2500 that day. Dr B seemed slightly hesitant about raising her chemo levels, but eventually he did. He raised her 6-MP for two days a week and is giving her another ml of methotrexate every Tuesday. (from 14 ml to 15 ml) He wants to look at her liver levels again in June when she gets her spinal. They are still high, but not out of control. It's funny how as a cancer parent we just accept so many things. High liver levels, ok, cataracts, sure, 20% chance of brain tumor, well...ok...brittle bones, no biggie....we just accept everything under the umbrella of please just save our daughter. We will deal with the rest later.

The scary thing is Dr B started to talk to me about being done with chemo. To which I promptly stopped him from discussing. I can't discuss it. I don't want to discuss it. Not yet. (I do believe the date is Sept 16th.) He just laughed at me and said ok. It is still months away. And I am a big believer in not jinxing anything.

We had a very busy Mother's Day. Church, up to Columbus, back to Dad's house for a fancy pasta dinner. Mother's Day is not so fun for me. I try. I do. But the void is still there and I am sorry I just can't pretend it is not, contrary to what most people would say to me...focus on your kids, yada yada yada. Well it is hard. But both my husband and my Dad tried to make the day special for me (and of course the kids too). And for that I am super grateful.

Back to the garage sale thing...Ally, in her infinite entrepreneurial ways (ie concession stand) has decided to sell nachos and hot dogs at our sale. Not to make money for herself, but wanting to help those tornado victims in Alabama. They are working on it both at school and via one of her swim coaches (who is from Alabama). I am proud of her for wanting to do something. One thing that these past two years has taught her is to give back. Not too many 9 year olds think about money in this regard.

I need to post some pictures from the Moms 4 Miracles event we attended on Saturday too...a great showing and hopefully more money raised for a good cause.

Thank you to Uncle Brad (Ally's Godfather) who ran a half marathon in Columbus with Team in Training on Saturday with Ally's name on his back. Thinking about all of her pain and suffering is what got him through...

Thank you to Aunt Melissa (Ally's Godmother) who tonight had 10 inches cut off her hair and donated to Locks of Love in Ally's name.

We couldn't be more blessed with a better Army. Thanks for all the prayers for our girl Ally.

Piano Recital

I wanted to share Ally's first piano recital with you. I think her song (called Starfish at Night) is only 40 seconds or so...but I thought she did a really nice job. It is hard to get up on stage in front of a group of people and she has only been playing the piano since September. I know from personal experience it is hard to learn piano too! We were very proud of our daughter, who looked so grown up that day. And in typical Ally-fashion....she said she was not nervous at all. Man it takes a lot to rattle that girl! I am still not sure what does!

She has been feeling okay. Some belly pain, as usual. I did take her to get counts again last Friday and she shot back up to 3500. Again, they want the number about 1500. So, we will see what the doctor says. I am feeling more and more convinced that she needs more chemo because she has gained some weight. The dosage they started last summer was based on her weight then...and I think she is up about 10 pounds. We can thank her lovely steroids for that. They never seem to leave her system, even though she takes them 5 days out of every 28. She has such such trouble sleeping and is always hungry and begging for food. Usually food that is not healthy. I definitely try not to give in on this, but sometimes she gets the best of me. After all that she has been through, and knowing the meds are causing it, I have trouble saying no sometimes. But I do think we do a pretty good job...all things considered. She wants to start swimming again for the summer season and the doctor thinks that is the best thing for her. In fact he told me if she was not swimming, he might go ahead and put her into some physical therapy because of her joint pain/tightness, etc. So I am hoping the swimming just works out.

Believe it or not, we are back at the hospital tomorrow (Friday). 28 days just comes so fast. It is a regular chemo day, but a bit shorter as she won't be getting the IVIG immunity infusion now that we are out of the sick months. We will see what Dr Broxson says about these ANC numbers. I am feeling less worried about it, even though they went up, because they seem to be hovering in the same area.

Will update more after our hospital visit tomorrow....