Wednesday, December 16, 2009

Holding on

Our girl is holding her own as of late. With her blood levels balancing precariously on the edge of needing a tranfusion, three rounds of chemo currently in her body, and attending school basically full time, I have to wonder how much more she can do. Every morning I wake up waiting for the ball to drop, but she keeps on going. She actually asked to go to bed tonight at 8pm. I never know when to push her or let her fall is a tough call to make as a parent...but the little bit of pushing has seemed to help her this time. The doctors always say that the more active she is, the better everything goes. It she doesn't move, her joints start freezing up from the chemo and basically everything slows down in her body. We will keep on going...two more days until Christmas break. I am saying multiple prayers a day that she does not get sick just in time to miss my Dad's Christmas party.

One thing that I have noticed about her lately is her reluctance to play. She has pretty much forgotten how to do it. I know she has her crafts, which are still going strong, and nails and such. But she really never plays. Whereas in the past, she would love to play with her friends, now I find her staying much closer to me. She chooses to hang out with the adults over the kids quite a bit. In the past she would jump at the chance to play with a friend after school, and now it can take some convincing. It is just another sad side effect of this whole thing. Her childhood is pretty much gone, at least for the time being, and I am not sure it is coming back. She is faced with so much and it is quite a bit of a burden for an eight year old to carry. She has always been mature, but this has taken her over the top. I do find myself daydreaming of the times when she will ride her bike again or run or dance or just be a kid. I hope it comes. It is quite difficult to not see your child do these things.

But it could always be worse. I know this. The hemoc area lost another patient this week. A 17 year old boy who had what Ally has....ALL. I hate that any parent would have to go through this. He was just diagnosed in October...and only lived two months. Last night, I could not sleep. (Well, this is pretty much every night for me.) But last night I just kept having vision's of John's Dad. He was always there with his son, he rarely (if ever) left his side. I didn't know him too much, but we exchanged stories and commiserated in the hallway a few times. Why, oh why, does this keep happening......

I was overwhelmed by people emailing me or commenting on the blog and offering up their help to get me through to Christmas. The crazy thing is several of the people I have never met or only met once. But everyone wants to help and we are so lucky for it. And even crazier, Janel said YES. I am actually letting people help me, which is probably what I should do more of...I am realizing. This may mean that I will get to bed before 2am and will be fresh and ready to go when Ally calls me into her room at 3am. And 4am. Hah.

Right now, we are just trying to hold on until Monday for a blood test and see where we are for that transfusion. And by the very grace of God, Ally does not get chemo again until the 28th. It just happened to be how the protocol was set up. And it is the only week skipped on purpose through this whole thing (all others were delays because her counts were too low). What a very special gift we got in that schedule. A greater power is working. Keep working....keep working... on saving my girl and bringing back that little girl I once knew who knows how to ride her bike and PLAY.


  1. Dear Sweet Janel,
    As you stated, this is a side effect. Little Ally WILL ride her bike and engage in games again. In her world, being close to you, Jerad, Evan and Carly are her new home base. I know that you all are going to look back on this someday way down the road and think. . . . . . with God and your mothers strenght, we were able to get to the other side. Healthly, happy and strong. You have to keep the faith.You are the leader for sooooooooo many through this journey.
    We are all praying for you everyday, and please , please know that so many are willing and able to do whatever we can for you and the family.
    If I do not receive a phone call to do something anything. . . . . . :(
    Hugs to all of you

  2. Your family is in our prayers every night. We are thinking of you and our candle is lit often in honor of Ally.

  3. Oh...that picture. It seems like yesterday that the kids would race down the sidewalk on their scooters. Ally is still the beautiful girl she always has been, and I have confidence that she will play and be a carefree kid again soon. Until then, we just keep making crafts and baking...

  4. Oh, God is definitely He always promises to do. He is working in the midst of this situation...oftentimes behind the scenes were it's not visible,but He is working nonetheless. That's why your faith is so crucial - believing while not seeing. God values that do the rest of us...because it's such an inspiration right in the middle of the darkest night. So - keep trusting, believing, hoping - one day at a time. God is faithful and will not let you nor dear Ally down. Don't forget - HE is the one who fashioned her in your womb (Psalm 139) and He holds her life in His hand. He needs strong soldiers for His army - who will believe when it looks hopeless and trust Him when it seems ridiculous to do so. This brings Him such glory. You all and Ally are soldiers...not only in Ally's Army, but in God's. Love you indescribably so! Lisa

  5. Hang in there Janel. Ally will be riding her bike and playing again. She will get through this and she will be so wise beyond her years. It will soon be 5 years since our daughter was diagnosed. I look at her now and can't believe everything she had to go through to get where she is now. We continue to pray for your family and that ally remains out of the hospital.

  6. In a few years you'll be calling us all saying "I wish Ally would stick around more, she's always off with her friends!" You know it's coming, keep the faith, and for now try to enjoy that she wants to have you four as her #1s.It may be a precious gift for the holiday, just hold them all close. My love goes out to you sweet Janel, I know how hard you are trying to get through this holiday and make it special.

  7. Hello,Janell. I have not slept for 2 days either and I could not figue out if it was b/c we were at OUR 2nd home or if my mind is wandering..I know I have told you that Amanda does NOT like to hang w/ her friends just her Dad and I.. She told me a few weeks ago that her friends are NOT like her and I think she might be a little jealous. There lives are going forward and our lives are kinda stuck. I think we give our children comfort and according to Amanda we would be best friends one day our day just came early.I do believe,I have to believe that our children will go back to their old selfs it will just take some time.. God has been so good to us .I feel we are blessed by the grace of God..I hope your week continues to be good.. Cathy O'dell

  8. I love the picture of Ally on the scooter. This is something to look forward to. Ally will beat this and be a stronger girl/woman for it.

    Have a very Merry Christmas! I'm so glad you won't be spending it in the hospital - although Santa does make a visit to the patients on Christmas Day. :)

    Take care of yourself and hang in there. If you need anything, let me know.