Wednesday, July 1, 2009

Good Day

I was surprised when I woke up this morning and realized that Ally was only up once last night. What a huge, huge improvement for us. Seven straight hours of sleep can make a huge difference to my level of patience throughout the day. So then, once Ally got up, I asked her the question that I regularly ask 20 times a day "does your belly hurt?" I almost fell over when she said NO. I have not heard that response in weeks. The day was definitely looking brighter at that point.

Another thing that I have realized is that I can't keep going at this pace. Lots of people that are going through this have a two parent care team, optimizing FMLA or whatever they can. I was shocked to learn about how many parents just flat out quit their jobs to take care of their cancer stricken kids. Other people use nurse aides and/or nannies. It is quite a bit to do primarily by myself, not to mention that I have two other younger kids. So, although I don't want to leave any of them, I am trying to think of some options to get us through this. Even if I just have someone in here a few hours a day, a couple days a week. It would be something. I am tired. I was tired before this even started...I had been a nurse to my Mom for the better part of fifteen months. I don't want to sound weak. I am just trying to be realistic. So I am gonna keep thinking about that.

Today I had our backyard neighbor Abby come over for a couple hours. She just took the younger kids down to the basement and outside to the playground. What a HUGE help this was. I got to do a project just with Ally, which I can never really do with the younger ones around. And they had someone to play with them and not trying to push them off. Later in the day, our twin babysitters Jackie and Jenny came over and gave full pedicures and manicures to Ally and Madison. They even brought a foot spa with them. This let me have an hour or so just with the little ones. We went down the street to the playground. I just feel better when I can devote some quality time to each of them. It helped that Ally really did have a good day. She only mentioned her stomach maybe 10 times all day (less than usual), so I am hoping we make a breakthrough. She is still not eating much. I am sure she will be down over 10 pounds by tomorrow.

I had an idea. These friends of my Dad, Reid and Susan Murphy, live down in one of our favorite places: Longboat Key, Florida. We have vacationed down there for about 20 years. They sent Ally this hat (and a multitude of other things) from the local aquarium down there. (thank you!) I thought it would be a fun idea to have people send Ally some unique hats from different parts of the US. If you go somewhere different on summer vacation and see a cool hat, she will probably wear it. She is wearing them everyday now. Her Aunt Shay even made her a hat recently...very sweet. On our end, we are working on some special limited edition Ally's Army hats right now too. Look for those to come out soon.

I actually think I am starting to get sick now...just a cold, but it is not good to be around Ally with her weakened immune system. So you might notice this is an early post and I am going to bed. I am nervous for our meeting with the doctor tomorrow. Praying for the MRD to be below the threshold. I am also nervous about her blood test. I want to move on already...into Consolidation which is the next phase of her treatment. A few prayers for my little girl who is quietly inspiring people every day.


  1. I am praying for good results and also for you, Janel, that you stay healthy. Take all the help you can get, it is good for you and all of the children. Ally looks awesome in her hat and I think that is a great idea. One day at a time!!

  2. Bring on consolidation! And Janel if you need more help it is ok to do so and say so. Let me know whenever I can do anything and I will, assuming my kids aren't sick at the time obviously. Hoping for another good night and day tomorrow.

  3. Janel...

    Special and hard prayers going up today... Ally is going to be ok...

    Put Joey in Days of Discover a couple days a week...not dealing with even a fraction of what you are but it is amazing how much he gets out of it and what i can get done in a day if I'm not chasing minutia...just thought i'd throw that out for maybe Evan. more love your way...May Gods love and the kindness of strangers be felt wherever you find yourself today....


  4. Love the idea of sending hats. I can't wait to see how many she gets! We have been looking for some fun ones-I will look for one from St. Mary's Lake! Love as always and extra prayers today...

  5. Janel

    I am thinking of you today and everyday. My love to everyone in the family. Don't be afraid to ask for help. You have already had to deal with more than I could certainly handle and remain strong. I know you will deal with this too.

    We are off to Charleston, SC for vacation. I will have the boys pick a cool hat for Ally. Look for it to come your way in the next couple weeks.


  6. Well, I must say that I LOVE the pretty smile on Ally's face in the picture above! She looks genuinely happy. Love the hat too. I expect she will be getting TONS of hats now! That's cool. Remember that "Miss Lisa" is always available - evenings, weekends, whenever. What about a soccer camp for Evan? Days of Discovery sounds awesome too. I think it's a good idea. Praying today for wonderful numbers for our girl and that strength and peace would abound in you and in her. LOVE YOU ALL!

  7. Janel,
    You are ALL inspiring us everyday!
    I read Ally's blog everyday and can feel the courage, strength and love.
    Keeping you in my daily thoughts and prayers.
    P.S. my offer still stands; Driver, Laundry, Housekeeping :)

  8. Janel,
    Great news. and I have faith that today will bring good news too. Ally's smile is beautiful...i remember when my dad would lose weight after steroids, and we ended up just making sure we had really densely caloric foods around. he probably had a full fat milk shake twice a day. and it helped.
    one other resource, gilda's club. i haven't looked at the availability in the dayton area, but i know it is a great place for the entire family (ALL ages) to get help and support dealing with cancer. check out wish i was closer to offer real help.

  9. Hello from Wisconsin! Our parents computer access is limited, but I was sooooo happy to read Ally had a good day yesterday!!!

    I am telling all of my family and friends about your brave little girl. They are sending lots of prayers from the land of cheese. Speaking of that will Ally wear a cheesehead??? okay I will get her a more appropriate hat.

    Ally looks so adorable! She has a beautiful face!!! I love all the boys and dads that supported her in the going bald afternoon. So neat!

    People look strangly at our one handed Ella every day. We just smile back. Hurts my heart, but I know this is the way God made her and she is still a cutie!!!

    Please remember our Mom's group at St. Lukes would love to set up a play date times for Evan and Carley. This way you can have some more one on one with Ally.

    I sooo hope you have more good days!!! Happy 4th of July! praying you have some good times that day!!!

    Hugs and prayers from Wisconsin,
    Dave, Jenn, Cade, Ella, and Reid Kac

  10. Don't forget to use students from the University of Dayton as a resource for help. I could put you in touch with the Pi Beta Phi chapter at UD...let me know if you would like a contact within the chapter.