Saturday, June 20, 2009

Stomach Pain Continues

Unfortunately, the stomach pain is continuing to be an issue for us. It hurts her all night, all day, all of the time. We were up with her about every half hour last night. (I should say that Jerad was up with her most of the time, I only got up twice) There is just nothing, nothing that makes the pain go away. She usually has a pretty good stretch of sleep from 4 am until 9 am. It continued to hurt most of the day. At about 4 pm, we rallied her enough to head up to a friend of ours birthday party. It was for Lucas Soin..the son of our friends who were also so kind to arrange the massages today.

They had a huge party with a circus theme. These people go all out. They had all kinds of animals...tiny little pigs, a lemur, a peacock, a porcupine, baby bunnies, llamas...they even had camel rides. They had a high flying acrobatic act, fire acts, a man on stilts, clowns, carnival games, carnival food (and adult food too). They had a swing ride, bouncy houses, and one of the coolest things ever...a little mine set up where the kids mined for gemstones. I think this was Ally's favorite thing. I thought that she was going to last for about 30 minutes. After all, she had cried the entire way there. But once we got there, she just lit up. Her little kid genes came back to the surface. She wanted to do everything, and we rode her around in a golf cart to do most of it. She ate, she walked a little, she played a few games. The Soins treated her like a celebrity. Fetching her everything that she wanted (sno cones?) and even arranging for her to feed the baby pony a bottle. We knew lots of people there (lots of people from Dayton Children's Hospital were there because both Vishal Soin and Jerad sit on the board of directors for the hospital together). Everyone wanted to see or talk to Ally. This was really the first public thing we had gone to since Ally was diagnosed. It was perfect, because she is allowed to do anything outside...the germs dissipate outdoors It really was a down day for her, she was miserable most of the day, but just being able to do this for two hours made us feel like a regular family again. And it kept her mind off of it. I know Melissa Soin is one of my most loyal thank you thank you thank you. And thank you for the massage too. I realized that I had been holding all of my stress right in my back, but I felt so much better afterwards.
Evan and I on our camel ride

This is the high flying act....a little hard to see, but in the back
Here is Ally, Evan and cousin Owen doing the mining. She loved it! Here is her treasure!
Feeding that pony...even got a smile!
Here we are with the lemur, peacock in the background
Swinging with her sister
I, personally, adored these baby pigs. How little!

This was Ally five minutes after we got home, holding her Bobo
Another thank the Wingers for taking Evan to the new lego store in Cincinnati today. The little guy has had a tough time lately, and he deserved to do something fun and pick something out. He had the greatest time and loves his new Star Wars legos.

Tonight, I washed Ally's hair. We have been holding off on doing it...about every five days. Well I did it and I would say about 1/3 of it came out. I can't even touch it without huge clumps coming out. Jerad and I just sit and look at each other in sadness. As a parent, this might be the most depressing thing I have ever had to do. My precious little girl's was so thick and beautiful. Now it is going to be gone. It is just killing me. I think more than anything it is just a symbol of her disease. And I hate that too.

We have a huge deposit for the hair fairy tonight. (By the way, she brought $5 for the hair last night.) Ally thinks that tonight's amount will be more because there is more hair. She is very close to letting our neighbor (who has a barber chair in her basement) just cut it off. She is so aggravated by it. Any day now...

I think tomorrow's post will be a guest post by Jerad. In honor of Father's Day, he can give the father's perspective. And give me a night off.


  1. wow! What an amazing party. I agree, the baby pigs are adorable.
    I am SO glad she was able to enjoy herself. I hope tongiht brings you all the much needed rest you need.
    The hair. It makes my heart ache to even think about it. She will look beautiful even w/out it. Her sweet freckles will stand out more and her beautiful blue eyes will sparkle a bit brighter. Still, I know it hurts so much to see it happening.
    I hope the hair fairy is good to her again tonight! :-)

  2. How fun was that?! I wanted to stick one of those little pigs in my purse and bring it home with us. :) I hope it at least helped take her mind off her pain for a little bit. I love that last picture of her asleep. What a day for Evan too--Lego store AND a circus party!
    I know her hair coming out is hard. Try to look at the "bright side" of it. No washing, drying, and styling and she'll have some super cute hats to wear, like that one tonight. While the guys shave their heads in solidarity with her, perhaps I need to grow mine out again so I can donate it again. Yes, I think that's a plan.

  3. How much fun! It looked like Ally had a great time- and was tuckered out!
    It IS sad to see her beautiful hair coming out- you put it perfectly in saying it is a big symbol of her sickness... it's hard to imagine that the medicines she needs to make her better, also cause so many problems and make her so sick... A few dear friends of mine who had cancer also decided to get their hair cut before losing every strand- as a way to take control and make the transition easier... she will be beautiful, with wig/hat/scarf or without- she is gorgeous inside and out... I pray that she sees this no matter what!

  4. So glad to hear that you all had such a fun day! What a fantastic party! It was wonderful to see Ally having fun and all of you too. Now to just conquer the stomach pain, wouldn't you think if modern medicine can cure cancer it can fix a stomach? so frustrating! I agree with Melissa, how about a summer of long hair for all of us so that we can donate! kate, from mom and dad's
    Love to you all, looking forward to Jerad's post

  5. Through these posts, I'm convinced that you are (or will be) helping someone else who is in your position. You are doing a beautiful job. Prayers for Ally's stomach...and some sleep for the whole family. Looking forward to Jerad's post.

  6. Oh poor Ally. She seemed to show a little glimmer of her normal self at the party though. Hope she can find some relief from the nausea and sleeplessness.