Wednesday, June 9, 2010

Last Day of School

Yesterday was the last day of school. I know it is always hard to believe for parents, but for me it was double as hard this year. So now I guess I have a third grader and a first grader (and a little preschooler.) It makes me feel old. Third grade sounds particularly old to me and I wonder how Ally will do next year. Will she pick right up? I believe she missed over half of her second grade year. She did have a tutor, but a lot of those days that she missed she was also too sick for tutoring. She missed most of the fall. All of January. Most of March. I think she only took a few spelling tests all year. How do you get all that back? You don't. I guess this is what the doctors were referring to when they told me she needs to go to school and be as normal as she can. Because the time comes when you have to live again and reenter back into society and events, etc. We are ready. That is for certain. She came home from school on Monday and was talking about signing up for cheerleading....and/or soccer. And her little legs can't quite handle it, but how can I stop her? Maybe it will help her build up some endurance. We will see how she feels through this maintenance phase. Some people have told me it is very bearable, but there are others that have told me it is just as bad. I guess we just have to see how it treats Miss Ally.

The amazing part about the last day of school for me was that Ally chose to ride the bus in the morning to school. Pick up at 7:02am. She had not done this since last September..the first weeks of school. She finally felt well enough to rise out of bed at that early hour. Most of the year we let her sleep a little longer. It is quite hard to wake up a chemotherapy patient. Especially one that is up multiple times every single night. But at 6:30, Jerad walked into her room and she sprang out of bed. Ready to go. I had to get a picture of her doing this.
There she goes...
With all the other kids, just as I like it.
Equal time for Evan and his busstop buddy, Regan.
Can't believe he is thru Kindergarten
As I type this in the morning (usually I am up late at night!) my three kids are down in the basement. The first day of summer is not as we had planned at the pool. It is cloudy and raining. Guess what? They are playing school! Noone is happier about summer break than little Carly. She is so happy to have her brother and sister here to play with her. She is cracking me up. I already hear a few fights brewing. But if I start to get tense, I just remember what I was doing when my summer started last year. It was not fun. There were no end of school celebrations like last night when we took them all to see a movie. Already this summer is looking up. We have made plans. Something we typically were unable to do.

So, even though we are in "maintenance" starting Friday, it is not done. I think some people assume that she is done with treatment...we have gotten a lot of cards that say that. (we must have done too much celebrating!) Unfortunately, she still has 16 months left. Starting Friday she goes back into the hospital. Grandma comes down for yet another day of babysitting. We start the phase with another Spinal Tap. I also think she will get her monthly antibiotic infusion into her port. She will get a push of Vincristin chemo. She will start five more days of steroids. She was also start a new medication regimen that will keep me on my toes. Chemo every day (6-MP)..and methotrexate pills once a week. The administration of her chemo will now fall onto Jerad and I. This is a task I will gladly take on to avoid all the trips down 35 to the hospital. Starting this phase does bring about fear for us. Although the heavy dose chemo has hurt her so much, it has also killed those leukemia cells. Without the big gun chemo, what will happen? I guess this is why she takes a little chemo every day. I have to trust the doctors. I must trust God. And I put all my hope into the premise that we will never have to walk down the horrible road again. Please feel free to join me in fervent prayer for this. We still need prayers from our Army.

Thank you to all of you who are still following our story. Some people have asked if I will continue the blog. Yes!!! We are far from done. My hope is that this blog will involve less stories of medical information and/or treatments and more stories about a family that survived it all...and can find happiness in every single simple thing of life.

7 comments:

  1. AMEN! We will keep praying every night!
    Happy Summer!

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  2. We know that this is just another step closer, will continue to keep you all in our thoughts and prayers. Hoping for a summer filled with love, laughter, smiles, joys, health and happiness. Janel you all deserve a summer with this and more.
    Hugs to all of you. :)

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  3. I have been reading your wonderful story for a couple of months now, a friend sent it to me as we are also going down this road. My son (13)was diagnoised 2/4/09 and we are in the maintenance part of treatment and let me tell you, it is wonderful being able to do the normal things in life and seeing your child return to the activities they love.
    Your family is such a inspiration and THANK YOU for the wonderful LLS support, Congrats to your family for such a wonderful accomplishment. Prayers for you as you adjust to the 'home' medications and hope that Ally handles them without having hospital visits, but it may take time to get them adjusted to the right levels as one has mentioned earlier.

    ENJOY YOUR SUMMER and love the momemts being created.
    Tina
    www.caringbridge.org/visit/jordanwilson96

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  4. Absolutely - fervent prayers every day! You are wise to trust God...He will never fail nor forsake you. You are all WARRIORS and I'm proud to know you. XOXOXOX...

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  5. I am still here and will continue to pray for you and share in your amazing journey. I hope summer brings you peace and this new phase of treatment proves to be easier. I am sure it will be.

    Amanda

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  6. Don't worry about next school year yet. You've come so far, but we all know that the fight isn't over. And we'll keep reading, praying, and celebrating your victories with your family. Just don't stop writing!
    Enjoy the summer. thanks for the videos and photos, too, by the way!
    jodi

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  7. Love the bus ride, that was one big step. One phase is over with another to begin but you will do just fine, like always, one day at a time. I know it gets old and sounds easy, but look how much you have accomplished and Ally and her army are winning this battle. My thoughts and prayers will continue each and every day as you enter this new phase. Enjoy the summer and congrats to Evan on being a first grader. Great job!!!

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