Thursday, September 20, 2012

One year!

Ally made a HUGE milestone this week.  On September 17th, she passed her one year off chemo mark.  It seemed like just another day filled with school, sports, homework, but to us September 17th was a date we waited for for so long!  It's almost like a birthday for me.  Just a happy day.  So we celebrated by having sundaes, with a candle in Ally's, and singing "No more chemo for you" (to tune of happy birthday ....)

This morning I spent some time organizing some of Ally's paperwork from diagnosis until today.  Tons and tons of papers that fill almost an entire cabinet in our office.  Medication calendars, hospital admissions, blood reports (x1000!), and on and on and on.  I was sifting through and deciding what to keep (almost all) and I just had the most overwhelming sadness come over me.  I still look back in near disbelief at some of the things that happened to her.  My little seven year old girl when diagnosed....and this weekend we are having her eleven year old birthday party.  Wow that just amazes me.  How far we have come.......time keeps ticking.

This afternoon I took Ally down to the hospital for bloodwork and to see Dr B.  Our last "monthly" appointment.  From here on out Ally will get checked every two months.   We walked into the clinic today and it was a bit like Norm walking into "Cheers"   Yea, everyone knows Ally.  I feel like I am at a family reunion when I walk into the Hemoc clinic.  Hello to Brian and Heidi and Amy and Amy and Susan and Nancy and every other person that helped us along the way.  Oftentimes we run into the Polish cafeteria worker who always runs up and hugs Ally (and then me) and then starts raving about how good she looks in her sweet Polish accent.  This is real life down there!  These people care ....then and now! 

Every appointment, without fail, we end up answering a million questions about Ally's health.  Fevers, rashes, school, medicines, eating patterns, headaches...we always have to detail everything.  And today I actually said to them....I think this is the first time I have walked into our appointment with nothing to complain about.  Oh, I guess her ankles are still hurting and not really working right, but basically no other complaints.  I always hold my breath a little bit when they read me her blood numbers.  It is just my instinct.  But today they were great again!  One more sigh of relief.  Dr B felt she looked good except he does now want her to start physical therapy.  He waited a whole year for her reflexes to come back.  You see when he takes the little hammer to her knee and taps, nothing happens.  Ever.  She has severe neuropathy in her feet/ankles.  She still can't really run.  So we are going to try PT to help her out.  It is just the years of vincristin chemo wearing on her.   I can't really complain about that though because I have so much to be thankful for. 

So this evening, I am counting my blessings that all is well in our world.  Not sure we will ever feel that "normal" feeling ever again, but I have to say it is pretty close.  Kids are going to school everyday.  I don't have to wake up wondering anymore.  I am feeling so blessed that Caulin is doing so well.  I know there are kids that are not right now.  I am so excited for the Curesearch Walk this Saturday to walk in honor of all of the kids.  Dayton has already raised almost $65000!  Ally's Army is responsible for nearly $6,400 of it.  Thanks to all who are signed up to walk with us and all those who have donated. (and almost half of our total came from the TJ Chumps Rally for Ally!)

If you are walking and haven't signed up, please do so here: 
Ally's Army Curesearch Team

Thanks to be to God and all of our army. 


4 comments:

  1. Such a great milestone! I am sooo happy for you all. I am honored to walk for Ally and Caulin and all the other child who do NOT deserve this horrible disease in the CureSearch Walk and Light the Night! We will find a cure!!!

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  2. Janel, I can't believe it has been this long on one hand, but on another, I feel as though I have "known" you forever. You have provided strength for your family throughout this journey and kept the faith. Congratulations to all of you. Breathe deeply and know your army is always with you.

    Love,
    Amanda

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  3. Hi Janel, I'm from the Gift of Life Bone Marrow Foundation. I've been reading your blog and I was wondering if I could speak to you sometime. Sorry I had to post this as a comment, I couldn't find a way to email you through your blog. You can contact me via email (thochman@giftoflife.org) or phone: 561-982-2900 x 2939. Our website: www.giftoflife.org. Thank you! Tamara

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  4. tracy.rose@healthline.comJanuary 21, 2013 at 9:21 PM

    Hi,

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    Please let me know if you have any questions. Thank you in advance for your consideration.

    Warm Regards,
    Tracy

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