Sunday, November 8, 2009

Methotrexate Weekend + Shopping

That's methotrexate hanging in that yellow bag.
Ally and I headed back to the hospital again Friday morning to start the LAST round of methotrexate. This time they did decrease the dosage to 75% of the previous rounds, with hopes it would clear her body faster and also hopefully mitigate the side effects. We spent a long day of crafting, TV, napping (her, not me), playing with her friend Dave,...and luckily she ate a little lunch. This will be her last meal for a while as she never eats when she is hooked up to the mtx and/or the fluids. I have given up trying and will try to make up the pounds lost later.
We had a very pleasant surprise when her fellow ALL friend Amanda, who wasn't even in the hospital, chose to come to the hospital anyway to visit us. Amanda is 16 and lives in Brookville...she was diagnosed just a few weeks after Ally. They have become friends of ours and follow the blog etc. Amanda and her mom were doing some Christmas shopping, which they must do at the times when Amanda feels well, and Amanda decided to use her own money and bought/made Ally a teddy bear at the Build-a-Bear workshop. She came to Children's to give it to her. Again, as I always say, I am just taken aback by the kindness of all people. Here is a 16 year old...spending her own hard earned money to try to make our girl smile. And she is sick too! It was just the kindest gesture and we really do love the bonds that we have made with our friends (and nurses) at the hospital.
Ally and Amanda. Friends with courage.
Even more kindness to share: my three friends (Nicki, Suzanne, and Lisa) and my sister Melissa decided we should do a shopping day in Cincinnati. We had planned this for a few weeks, but then Ally got delayed because of the fever and I wasn't sure I could really leave this whole situation. My wonderful mother-in-law, who seems to help us nearly every weekend, came and stayed with Evan and Carly. Jerad stayed with Ally and Janel got to go! Wow, what a treat. It is amazing how much more I appreciated it now than I would have in the past. I rarely, if ever, get a break where I have none of the kids with me. And I think some of you all thought I might crack if I didn't get a break soon. (and you were right) It felt so good to be somewhere other than the hospital or my home. I kept watching all the people go by and thinking...I guess this is what "normal" people do on a Saturday. A little shopping...a meal out...a nice day to feel the sun on your face. Someday...someday...I will again be able to come and go as I choose. I hadn't shopped in a long long time. I found the money that my mom had given me for Christmas last year! She ended up getting cancer on her brain about 5 days after Christmas last year. Then I dealt with that until March...then I have dealt with Ally...and shopping hasn't been something I have done. So I bought a few things to redecorate our bedroom...a little diversion project I have been wanting to do. I also put a few bags worth of Christmas gifts away. I am not so sure how I am going to handle Christmas shopping this year. It is a daunting task that at the moment is right at the top of my stress list. It was always stressful for me, but now with everything else it seems nearly impossible.
Here are my girls at Crate&Barrel (and I did buy those orange paper lantern flowers behind us!)
Our friend Dave Kacmarynski is stationed over in Afghanistan. The Fox Sports NFL guys are there taping their show this weekend. He was in the crowd and holding up an Ally's Army t-shirt as the camera panned over them!! How cool is that! I am hoping I get to see it today. (on from 11am-1pm) Thanks Dave. In the midst of your own war, you have remembered ours. Ally really does have an army all over the place!

Speaking of Ally's Army, check out these members who got a 14 point buck this morning at Fox Hill with bow and arrow. Jon Trick, who works at Synergy, got the deer. To all you Bambi lovers.......don't dismay. They are having an overpopulation problem up there and something needed to be done. I can testify to that as I saw several deer on our way home from Cincy last night and I was scared I would hit one.
Didn't the deer see the orange? (just kidding)

Ally is definitely suffering from some belly pain. If I could get her to even eat one morsel of food I think it might help. She did get to go outside to the Dayton Childrens playground yesterday in a wheelchair. It allowed her the opportunity to see Evan and Carly for a few minutes! The weather is just beautiful this weekend and the dr insisted that she get out for a few minutes. He also said she could go home today (on fluids) and we are waiting until about 3pm for the home health people to set her up with her fluid backpack. Then we will be making the pilgrimage back to the hospital everyday until she clears the mtx level (.1). Hopefully it is sooner this time!

Thanks to all who have made this weekend a little better for the Barnett family. Just hoping that my girl starts feeling a little better and we can move on to the next phase of treatment. As my friend Jodi always reminds me, one day down is another day closer to the finish line. We are five months in. 23 to go.





6 comments:

  1. I love the photo of Ally with her friend Amanda. Two girls who understand each other's journey...and what a special thing for her to do.

    Hoping dear Ally clears that level MUCH sooner this time around. Looking forward to having her home.

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  2. So glad to hear you had a wonderful, reviving, and much needed weekend. Good job girlfriends. Hope it is followed by a good week. Love Ally's big smile in the picture with Amanda. Can't wait to see the new bedroom.

    Jenny

    P.S. Mitch is envious of Jon's buck. He has only got a doe so far this year. I am sure they will chat about it.

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  3. I can remember the first time I went to the Greene with my sister after Maggie was diagnosed and we'd been in the hospital for over a month. I had similar feelings, but I also thought, as I watched everyone around me enjoying life, you have no idea how good you have it. A part of me felt life wasn't fair (and honestly, I still feel that way.)

    I'm glad you got a chance to get away and re-energize. It was a wonderful weekend to do so. Praying like always.

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  4. So glad that those wonderful friends and sister got you out!
    By the way, watched that Beavercreek Extreme Homemakeover last night, how amazing! Boy, wasn't that guy an inspiration too! Here's to a wonderful community all the way around.

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  5. thanks for the post. I didn't mean to nag on facebook, and I figured that since you hadn't written that everything was okay. So glad you had a break. And I love the bear that Amanda made for Ally. That's pretty cool, and Ally's smile is fantastic. I'm really hoping that you guys came home yesterday as expected, and the mtx level drops quickly.

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  6. So glad you got a break to help you gear up for this last round of the metho. Love reading about Ally and her friend! The world is full of beautiful people. I hope many, many of them are sprinkled across your path this week.

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