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.