Tuesday, August 18, 2009

Together we can do so much

Ally had another good day. More swimming, playing with her cousins, water balloons outside, and she even attempted (not successfully though) to try out her brother's new scooter. I am probably boring our blog readers with normalcy. I so much prefer it this way though. We still get some complaints of belly pain, leg pain, etc, but wow have we come a long long way. I am so grateful.

I remember, back at the beginning, I would be walking around, through the grocery store let's say, and having all kinds of almost resentful thoughts as I looked at the people around me. I would look at somebody and think I bet they don't have to worry about going to the hospital tomorrow...they don't have to worry that they will be up all night with their child...they don't have to worry about their child missing a bunch of school...and yes..the big one...they don't have to worry about their child dying. Why did I have to have all this stress when everyone around me just had normal stress? I would look out the window at all the neighbor kids who were running around or on their scooters or sliding down the Bonzai slide, and I would get so so sad. But now, I am pretty much done feeling sorry for myself. I am done wishing and hoping I was in someone else's shoes. I have accepted our fate and we are dealing with it. I still worry about what the future holds...I was actually doing some research last night that said these kids aren't considered cancer free until 10 years after her last medications. She will be out of high school by then!

This is not to say I am not anxious right now. For every parent's worry about the start of school, you can multiply that by 10 for me. I really would like to talk to Ally's teacher, the school nurses, the PE teacher (that's gonna be hard for her), her principal...I even really want to talk to the school secretary that hears on the absence line all the illnesses going around. Not to mention that my middle child is starting Kindergarten...that in itself is stressful. So much to think about, and here I am heading out of town to see my aging grandparents. It will all get done, it always does. Two weeks ago, I would have been skeptical that she would go...but I am really feeling that she is going to be able to go almost every day for now. (not Fridays of course) The lack of air conditioning is one of my biggest worries...I think the heat will wipe her out. It did even when she was well.

These are all good worries to have though. It could be so much worse. We have met many sick kids along our path so far. Ally's little friend Maggie, who is also an ALL patient but is only 2, is having horrible side effects and diarrhea. These parents are worried that she will have to go back on IV nutrition in which case they are forced to deny her all food. Which must be terribly difficult. Another six year old friend we have met, Jackie, who has kidney cancer, was back in the in-patient unit on Sunday with a fever. And the nurses told me there were two other "really sick hemoc patients" on the floor. Please say a little prayer for these friends of ours.

Which brings me to my final thought...a huge grateful feeling in my heart for all of you who have signed up to walk with us on Oct 1 (I think including kids we now are up to 125) and for all of you who have asked friends and family to donate in honor of our Ally. We have raised $5500 so far!! Check out our Light the Night Site if you get a chance. I check it all day long!


It is amazing. And I know we still have more ideas on the plate...tons of people with tons of good ideas all contributing to our cause. We are making a difference, not just for my small family, but overall. I saw this quote today in a book that my friend Nicki made for me when my Mom first left for her surgery at the Cleveland Clinic....it so applies to our army:

"alone we can do so little, together we can do so much" -Helen Keller.


  1. So glad that Ally continues to feel good and have fun. Please let me know if there is anything I can do to help w/the beginning of school. I remember the hecticness of that time. What an impact your family is having on so many others...what an impact ALLY alone has. Wow - that is just amazing. Who knew your 7-year old girl would be a hero??? LOVE YOU MUCHO!

  2. You're awesome. Keep you head up girl.

  3. I hope you enjoy your trip. Thanks for the perspective. It is really important to educate and let all of us know the good, the bad, and of course, the ugly. Looking forward to Jared's posts too.

  4. So glad you continue to have "normal" days and Ally has good days. I know your worries about school are ten times what every mother has. As a former teacher, you should talk to everyone Ally may come in contact with before school starts. Teachers like to know as much as possible about any student that is important to their well being. Talk to everyone that you feel the need to so you will feel more comfortable about sending her to school.

  5. The quote is awesome and so is Ally's Army. Together we can do a great deal. I remember the first day of school and I had 35 of them just for myself. I was excited but yet anxious for every year of teaching to begin. School will be awesome and it will be great for Evan to start kindergarten. Hang in there Janel, you are doing an amazing job and so is your entire family.

  6. Janel,
    I admire that you have gotten to the point where you don't have self-pity. I think perhaps we should get together and talk as I am still not to that point. I again am so happy that Ally is acting like herself. Normalcy is wonderful. Thanks so much for mentioning Maggie in your blog and for your prayers. We really do appreciate them. Prayers continue for Ally as well!