Monday, January 18, 2010

Ally's Army Bracelet...

The day is done. The shots are done. They were not pretty, at all, even bringing me to tears today. (Wimpy Mom syndrome.) For some reason, Ally was quite nervous today. We got to the clinic and within about 45 minutes she was accessed and the chemo was already up there. This usually takes about two hours! So a new record for us. They mumbled something about there being a new pharmacist. We now love her even though we don't even see her! Anyway, Ally was agitated about getting her port accessed...sort of slapping the nurses hands away as they tried to do it. That fiesty girl. So I kinda suspected we were gonna be in trouble with the leg shots. And we were. She just got herself all upset...again slapping at one of the nurses to the point where the nurse actually had to say something to her. UGH. She is not usually like that, but today she was just in one of those moods I guess. She kept wanting to count to three, but then just kept restarting at 1, crying all the while and just getting more upset. So finally I said to the nurse that the prolonging by her was just making the situation worse. I hurled myself on her upper body and covered those slapping hands and the nurses did their thing. It resulted in crying and screaming, but within minutes was over and we were on to doing a puzzle like nothing happened. We had to wait around for a while to make sure she did not have a reaction...and then we were outta there in our wheelchair. Her legs were hurting, but we were done with leg shots for at least a couple more weeks.

Her platelets were low, so she has to get tested again on Thursday with the thought of transfusing on Friday, but I am hoping that we don't have to. Something is eating up her platelets and I wish it would just stop. Dr. B looked her over and thought she looked great...lungs sounded great. She even told him her really big news of the week: that she is now eating salad. After never before touching it with a ten foot pole, she is now eating it. It only took 8 years, but I guess it has to start sometime. We also found out that her next cycle, starting here in two weeks, will be timed out every 10 days instead of every week. A tiny bit better, I thought.

After chemo, Ally was rewarded with the best treat ever today: six of her cousins (including the twin babies) from Columbus were sitting at her house ready to play with her when she got back from the hospital. Thanks to the Barnetts and Colombinis for making the drive and making our MLK day so much better than it could have been. (and for taking care of C and E while I was gone!)

We have mulled over going back to school or not. This is my huge stresser decision for me. If you saw her and how withdrawn and dependent she has become, you would understand why it is best for her to go to school. But putting her into the germ factory, not so good either. She DOES NOT want to go. I asked her why and she says she doesn't want to leave me and just plain doesn't want to go to school. Really, a lot of normal kids don't want to go to school either. We have talked to her about going when her counts are good and when she is feeling good. And not going if she feels bad. And we came up with a bit of a compromise so that she feels like she has some control over the situation. (few half days, few full days) So we are gonna try it, AGAIN....she hasn't gone in a month, and this could all get thrown out the window next week if her counts are too low. The next phase should be a little easier on her, so I am still hoping. I can always hope. But this does cause me some major graying of the hair.

Last, but not least, I want to share an extremely special Ally's Army story with you. I mentioned the other day....about our friend's son who was in a car accident on Friday. He is 17. Well tonight I learned a story which I will never forget. He was in this horrific accident and had to be careflighted to the hospital. When he got there they cut off all his clothes and such and quickly sent him into two major surgeries. For the last few days, he has been in a coma and also has been restrained at his hands. They said today, the medical team was taking him out of the restraints and looked down and saw something orange peeking through. It was his Ally's Army bracelet that he faithfully wears. It had made it through the whole ordeal and his Mom took it as a good sign. (when Mom's are in trouble with their kids of any kind, I think we all look for signs) I believe his Dad even got a picture of it for me, and if I get it I will share it with you. I asked if I was allowed to share the story, because it so touched my heart and hopefully it will for you too. Two kids, facing something they shouldn't have to I want to wear a bracelet in his honor as he fights his way back to health too.


  1. Salad?? Way to go Ally on that! Only took 8 years, huh? Guess there's hope for my boys still... :)

    Sorry it was rough at the hospital, but looks like she had a great rest of the day. Hoping school goes well tomorrow. I know you will be on pins and needles all day wondering if you will get a call.

    Can't believe the bracelet story as well. They really never saw it until today? Amazing, and I sign I say so too.

  2. I can't wait for the day when all this is behind you. No more shots, no more transfusions, no more nights at the hospital...Just keep looking forward to that day! We think of you and pray for Miss Ally often.


  3. The pictures are so cute! Ally looks great. I'm sure Ally doesn't want to go to school because there are so many traumatic things in her life right now that she just feels safe at home. Understandable! Follow your heart - you will know the right thing to do at the right time. I'm praying for wisdom and insight for you as you battle these daily decisions. Praying for this dear boy, too, who is fighting so hard. Love to you all...and many prayers.

  4. Janel, the last thing I would call you is a "wimpy mom." You are exactly opposite of that. You are an amazing, inspirational woman who deserves a mom-of-the-century award.

    Anyway, I haven't commented in awhile but wanted to send my love and tell you I'm always here, lingering and reading and praying and worrying and sharing in your joys and triumphs.

    I miss you, I love you. I hope with all my heart the next phase is easier on everyone, especially that little fighter with the beautiful smile.


  5. I think the worry over how something will hurt is often so much worse than the pain itself. I know I deal with this as an adult and can only imagine what it feeels like when you are 8. As far as you being wimpy-- no way! You are a mom and a great one at that. You tear up because you live and feel with all of your heart. If your baby hurts, you hurt. You are stronger than you know, Janel.


    PS I still need a bracelet. How do I get one?? (or 4)

  6. The bracelet story is really touching. I never take mine off and think of Ally every time I look at it. Hang in there. Things will get better.

  7. Great job Janel and Ally---salad, I am still working on that one and I am 63!!! I wear my bracelet all the time, it is right next to my Livestrong bracelet for my husband. We are very strong, and getting stronger. Glad you had some good days and know that there are more to come. I am sure of that, thinking of you often. Now who do we cheer for in football????

  8. Hi Barnett family,
    Just wanted you all to know that we are praying for you. Keep the faith and stay strong. You know what is best for you and your family.

    Hollie Greene
    Jackie's mom