Thursday, July 30, 2009

Delayed

Today was the day we went to get Ally's blood tested to see if she can move on to the next phase of chemotherapy. Her ANC had to be over 750 to move on and start the next round of chemo. Her ANC was only 70. And 70 is very close to zero! They put her into the holding pattern. With the ANC so low, she wouldn't be able to withstand any more. So we are NOT going to the hospital tomorrow. This is the the first time I will be at home on a Friday since mid May. The plan is to start the next round, month 3, on Friday August 7th at 10am. Again, she will have to pass the ANC test next Thursday.

Are we disappointed? Sure. It is scary to think we are giving those bad cells "a week off" from the beating they are taking with the chemo. On the flip side, we are giving our daughter a week off from the side effects and fatigue that those same drugs give her. Jerad said...well maybe the fact that her ANC is so low, maybe that means that the drugs are working and doing their job. When the nurse called to tell me that chemo was canceled, she also warned me of the high probability that this low ANC will bring on a fever and another mandatory hospital stay. So I have that to worry me to sleep tonight. Always something.

We went to the outpatient testing center here in Beavercreek today to give the blood sample. Or should I say samples? Yes, both my girls had to give blood specimens today. Carly's doctor had ordered a lead test, so I just did them both at the same time. First I held the baby girl, she got pricked, screamed, cried, consoled, and then I set her down. Then I held the big girl, who was crying even before she got poked, she cried, was consoled, and they both got to pick a gift from the gift drawer. I don't think they get too many hemoc patients there, and definitely not too many sisters. The nurse was quite possibly the nicest nurse I have ever seen and was hugging both my girls as we left. Here is Carly...running up to give this nice nurse a hug...the same nurse that just pricked her and drew blood. Kids are so forgiving! I think people were staring at us. I think people are always staring at us though...I'll save that for another post.

Thank you to Ada and Keli for coming today and bringing me a yummy chicken salad lunch. It was the best chicken salad I have ever eaten! Thanks for the gifts for me and for Ally too. But most of all, thank you for reaffirming my faith. I love hearing your stories...Keli even told me of several times that she was awaken in the middle of the night just to pray for our Ally. They assured me that there are angels watching over my girl.

Tonight I attended the team captain kick-off for the Light the Night Walk. There were a lot of captains there, but I think I am one of the few new ones. There didn't seem to be families themselves attending, but rather people that were there on a family's behalf etc. There are survivors who walk, but also, sadly, there are people who have lost loved ones to a blood cancer. Of course, I hate hearing that.

The walk is structured like this. There is a registration time when people are turning things in, etc. There are clowns and balloon guys and bouncy houses for the kids. About 7pm, they have special ceremony. To celebrate the survivors, but also to remember those who lost their lives to this disease. At 730, which is about dark, the 1-2 mile walk begins. They keep it short so that older/younger/sicker people can still participate. Every person carries a lighted balloon. Red if you are there to support someone, white if you are a survivor of the disease, and gold if you have lost someone. They say it is a remarkable sight to see all of these balloons light up at night. Gives me goosebumps just to think about it.

Our goal is to raise money for the Leukemia and Lymphoma Society. I will be setting up a webpage and it will have information on how to donate online. I guess that is extremely successful because people can donate right online and email it to other people to donate. I think everyone that walks raises some small amount of money...it could be $10. The teams that raise the most money are rewarded.

I have a few ideas of things I want to do to raise money. We did the bracelets. Great idea. Hats and t-shirts are next. I think we may have a party/concert with a cover charge with the money going to the walk. I also think we are going to do a poker tournament. Possibly a wine and cheese party. I bet we can do a spare change drive at school. Or maybe pay $1 and you get to wear a hat to school like Ally. If I could get a business or restaurant to help me, I have those little signs they hang up in the window if people donate $1. Restaurant nights. I have a big list of ideas. But only two short months to do it. And very little time!

So if you want to help us out, think of a small way to raise money. You can do this in Texas, California, Ohio, wherever. And then we can keep track of it on the webpage. Garage sale, lemonade stand, happy hour, jewelry party, maybe just ask your friends. Check out Sheri Cobler's comment from yesterday. Those Junction City kids have some great ideas. They are working at Pizza Hut as dishwashers to fundraise for Ally's Army walk.

I also have some more information coming on two different blood drives. I am still working on those and this post is getting too long so I will quit while I am ahead.

But think about it. Get an idea and just run with it. We can put some money towards research for this disease. And more importantly, consider walking behind Ally on the night of October 1. The balloons for her will light up the sky.

12 comments:

  1. As always, I am at your service with anything I can do for 10/1. Jot down your ideas and put me to work...sounds like you already have plenty! Seriously, don't do this all yourself. Pretty sure I speak for all of the followers when I say let us help. Can't wait for 10/1 and can already picture the people there to support Ally and dollars to support the L&L Society. I'll be sitting next to the phone with my planning hat on! : )

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  2. We are definitely ready to help, and excited to be part of your support group! When you get info on t-shirts, bracelets, etc. - I'd be glad to get the word out here in New Lex/Junction City. I'm sure there will be many friends and family who are ready to donate and even jump in to help! Smalltown communities certainly do come together to help out! We'll be keeping you in our thoughts, and hoping that Ally's blood test goes well next Thursday.

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  3. I so admire your tenacity and motivation throughout this fight. You are amazing! YOu have an entire army of soldiers right behind you, ready to walk and do WHATEVER our warrior Ally needs. Plus, you have the God of the universe standing by you, strong, steady, and powerful.
    "Does He who fashioned the ear not hear? Does He who formed the eye not see?...when I said 'my foot is slipping,' Your unfailing love, Lord, supported me. When anxiety was great within me, Your consolation brought me joy...the Lord has become my fortress, and my God the rock in Whom I take refuge..." Psalm 94

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  4. My mother in law, Donna AKA Gahgi, just showed me an arts and craft idea a couple days that the kids might like and I thought it could also be a great fundraiser. The kids trace their hand on a card stock paper then cut them out and decorate them with jewels, etc. to look like they have braclets and rings on. they are adorable. the kids could sign and date them and sell them for donations. Then people can display them in windows, at work, in cars, all over to show support. Each one would be unique. a slogan could be "Helping Hands for Healing" or something like that.......I will show you one the next time I see you. they are very cute and the kids LOVE making them.
    Kim

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  5. Thank you for sharing your heart today. His strength is perfect when ours is depleted. You are absorbing the strength that God has provided because so many people are praying for you each and every day. The love you have for your children and family is evident...and without a doubt, God is going to use this portion of your life journey to help other moms. Thanks for the bracelet, it is a great tool of opportunity to share the need to raise the funds for the walk on 10/1. Looking forward to helping in the fundraising events and the walk! Let me know how I can help you in any way! Sounds wonderful....Ada

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  6. I have participated in the LLS Light the Night Walk for over 5 years. It so cool to see all of the balloons and people supporting LLS. I plan to walk on your team and raise money so count me in! I love your enthusiasm and tenacity!

    I wear my bracelet every day and think of Ally and your family every day. Sorry I missed you last Friday. Ally seemed to be in good spirits though.

    Hang in there. Call or email me if you ever want to chat.

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  7. Janel, as Brad said please do not do this yourself we all need to help and he is right he can speak for all of us. We will help with anything you want. I had talked to Jessi and Kevin about doing an "amazing race" (this event has the two of them written all over it) but for now we don't know enough about it to get it off the ground that soon, but we will work on it. We can always do it later on when Ally can participate it might be fun to do two and gear one towards the kids and one for the adults. As always you all are in our prayers

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  8. Janel & Jerad, I just wanted to let you know that your family has been in my thoughts & prayers everyday since I heard about this. Jenny is doing a great job getting everyone together and fundraising on Ally's behalf. We are excited to come and support Ally during the walk. It's funny how many of us haven't seen or talked to each other in almost 20 years. But as soon as a friend needs support, everyone jumps right in to help. I'll be praying specifically for Ally's blood tests next week.
    Billie Mitchell

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  9. Janel, I will get my thinking cap on for a fundraiser for you. I'm sure there is something for us even in Michigan! Praying that this truly is a week off for your little girl and that she has a few more days of true summer. LOVE!

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  10. I hope your friday was quiet and Ally's counts come up very soon. I'm sure that is scary with them so low.
    I've only done the walk once, with a gold balloon. But it is beautiful, and now there are lots more red and white balloons than ever before in history. We are going to figure something out here in Brooklyn...will let you know.
    My best wishes for a restful weekend too.

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  11. janel,
    a delay is not always bad, it gives all of you a little breather, that chemo is doing its stuff even if there is no new chemo in there, believe me. Your entire family needs a short rest and Jared is correct, it is working!!!! We have come a long way in treating this disease and the walk sounds wonderful. Keep me posted, and remember, you will never be alone. I think of your mom and John everyday and they are also fighting for Ally.

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  12. We will be there in October!
    Mitch, Jenny and the girls

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