Friday, September 14, 2012

Keep your chin up and keep walking

As the 3rd week of school comes to an end I am finally starting to feel like I have a little ground under my feet. To say the past few weeks has been a tad overwhelming is not really an understatement.  Most of us with kids find the first few weeks of a new school year hectic as we get back into the routine of adding early bedtimes, early alarm clocks and a bit of rushing to make it on time a bitter-sweet transition.  The lazy days of summer are behind us and I am so incredibly grateful for the 45 days of down time we had after coming home. Boy did we need them!  I am amazed at how much we crammed into those wonderful 45 days.

How is Kayla? It's a question I am asked multiple times each day. (Thank you to all of you who truly have a special place in your heart for our wonderful girl!)  Kayla is doing pretty well! Her body is growing healthier each day.  We even battled our first cold and might I say she clobbered it!  I was so nervous not knowing how long it would last or how bad it would get, and I think we really lucked out with only one missed day of school.  Either it means her immune system is stronger then I think, or we were lucky. I have a feeling, we were lucky. Whatever it is, I am so grateful it was not worse!  Kayla's hair is growing in dark and straight. It is SO soft. People love touching it and so far, Kayla does not mind. I find her constantly rubbing it herself. We think it feels just like her kitty Meow-Meow.  Kayla's lashes and brows are long and dark. Just the way mommy remembers them.  As far as her weight, she is still hovering right around 37 lbs (which is still about 4 lbs less than Anthony).  I could not be any prouder of her efforts.  Her appetite is constant. Her belly is for sure growing in capacity.  It is good to see! Kayla has always been on the petite side continually measuring in on the 25th percentile for weight in her yearly check-ins.  What I do notice is her color. She is looking SO much healthier.  Her cheeks are fuller and she is starting to look more like Kayla again. Kayla came home yesterday and said that one of her class mates paid her the nicest compliment. I asked her what they said of course. She said, "Mom, so & so said they could see a little fat on my legs! I was so happy! Isn't that the nicest thing?"  Can you imagine??? I think I would have to plow someone over if they said that to me... but to Kayla, that made her day!  So far, academically, Kayla is right on point with the other kids in 3rd grade. She is moving along nicely with them and is reading at her level. This is such a testament to St. Jude for really taking care of our family in every way they could. Just amazing.

Denny finished his CNA course on Wednesday. It was no surprise that he passed the test given in class and will now be able to take the state exam on Oct. 4th. I hope it opens a door that gives us health benefits soon.  That would be nice! Being the only one working is a new challenge that I have never had since our marriage.  I have to say, it's been very nice the past few days having him around more again.  What a change it first was to go from hardly seeing each other every week to being inseparable 24-7 for 8 months. Then to come home after this war to be separated again!  We are both trying to process all the changes and this new normal and find ways for ourselves and each other. We just celebrated 11 years married on Saturday. I am just so grateful that we are actually closer now than ever. So many couples split when tragedy strikes the nest. Not us! We found strength in each other.

I am still putting one foot in front of the other. The tight rope is thin, but I'm on it still.  I have faith in this path that has been put before us.  I know we cannot change the past but we can just keep moving forward and continue to be grateful for each day... for each breath.  Grateful for friends. Grateful for the love of strangers and the strength to keep moving on.
 Lately I find myself with very mixed emotions on our upcoming trip back to St. Jude.  Anxious for the scans? A little. Mostly right now I am looking forward to it.  I am looking forward to seeing familiar faces.  I am looking forward to being there just to check in and not be going through treatments.  Mostly, I am excited for us all to have a good dose of the St. Jude reality check!  There is NO place like there to put life back into perspective.  You walk through the doors, look in any direction and are reminded of not only how precious life is but how lucky we are. Lucky that we have made it this far. Lucky that Kayla is still with us. Lucky that it wasn't worse.  You just never know. Life can change in the blink of an eye. So for every day, I am so grateful.

The beast strikes again.  Yesterday, we lost a very dear friend to our family. Pastor Marcus Hess. He was such a comfort to us as we went through the emotions and the fear in the beginning of all of this. He was there for us as we needed him. Never ever making us feel pressure, but just there for us to talk to.  I was very honest with my fears and my emotions.  Just such a great friend who we will miss.

10 Months ago almost to the day, these pictures were taken. It was the night before Kayla's brain surgery and he came to visit and pray with us. Healthy. Happy. Full of love, compassion, wisdom and strength.

And my personal favorite.... This beautiful picture was taken the night that our friends held a fund raiser for our family in February. Just 7 months ago. I will never ever forget the strength and compassion he showed my mom during the toughest time in her life.  What a gift he was to our family.  He will be missed by everyone who was blessed enough to truly know him.

Cancer is a beast. 

Only 12 months ago we were here:



Only  7 months ago we were here:


I am truly sorry if this hurts to see. Just imagine being in our shoes.  In only a second your world can be turned upside down. It can happen to anyone.  Please help spread the word that we need a cure. Please don't be shy about it.  I know this is hard to see... but it is real.  46 mommas will find out that their child has cancer today. Tonight 7 mommas will be numb with the loss of their child due to this unstoppable monster.  I have said it and I will say it again and again until we win. WE NEED A CURE!  This is September. Childhood Cancer Awareness month. If you can, please please share this blog.  Share Kayla's story. Help another family know that they are not alone in this war and that there are people who will never stop searching for a cure to this disease. 

Currently, here we are today:

This is our forever reminder of the battle our precious girl fought. "Will it grow back?", people keep asking.  No. This is due to the final radiation boost given at the tumor sight on day 31. You can see the thinning at the top as well. Is it just hair? YES! Do we still have her here? YES! Do I hate these physical reminders? ...... Yes.
Full of love. Full of laughter. Still full of FIGHT!  I will never ever stop until no other person has to suffer from this evil and aggressive disease.

It's still a process and she has a ways to go yet, but I am so thankful to God for where she is right now. As I look at Kayla, I see so much life in those eyes. So much love and so much to be grateful for. I feel blessed to be sitting here on my couch writing in my journal right now in our home. Kayla has already touched so many lives and I am grateful to be a part of her story.  Cancer will not define her, but I know that it will be a major piece of the puzzle that determines her future.  I continue to pray that as a family we can use the lessons we have learned and the challenges we have faced to help Kayla become the woman that she was created to be.  Her life might not be the normal path we dream and plan for our children, but she will do incredible things with all she has learned.  She already is.



Here is Kayla's latest piece of school work that I just had to share with you all:


Kayla's perspective.
Stunned at how much detail went into this. You would have to have been there to realize just how accurate this picture really was. From the green nightgown with stars that I trekked to target for the day before St. Patty's day, to the outfit that dad wore constantly while inpatient, down to the crocks to the left side of her bed.  You can even see the pole with the chemo hooked up to her line. The funniest part was dad's bed stretched in-between the parent room and the child's room. Truly, he was in-between and never far from her... except while watching True Blood apparently. HAHA!

Thank you again to all of you who continue to help us to stay strong. We love you all!



17 comments:

  1. Kayla continues to be one of the most beautiful little girls I have ever known. We miss all of you.

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  2. I'm so happy Kayla continues to get stronger. She's looking good with her new hair, but no longer a blond? Congrats to Denny on his graduation. Its so good to look out and see all of you across the street. Susie

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  3. Emily (Hoburg) RaakaSeptember 14, 2012 at 4:18 PM

    Thank you, thank you for the update and for sharing Kayla's school work! The True Blood tv is hilarious! We will keep spreading the word in this fight.
    xo

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  4. Annie, I'm so happy to hear and see how well Kayla is doing! Yahoo!! I will always share Kayla's story...it must be heard. You are an inspiration and such a wonderful momma. Many many prayers for a perfect trip to St. Jude's. Xoxo

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  5. Wonderful update - love her new brown hair! She's going to look just like you now!

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  6. Kayla is looking healthier and healthier! Her handwriting has to be the best handwriting I have ever seen! I love how accurate and detailed her drawing is! She is amazing! Thanks for all the updates.

    Betty Criesco

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  7. Thank you Annie for the update and for reminding me of what is truly important! Kayla looks great, the pics are definitely a testament to the whirlwind you all have experienced over the past year, and yet here you all are, still standing strong. You are all heroes in my eyes and will continue to be in my thoughts and prayers and close to my heart always...

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  8. I am very happy that Kayla is getting stronger her story is very touching. My thoughts and prayers are with your beautiful family.

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  9. Wow! We are amazed by Kayla's picture and handwritten letter! So intricate.
    Many well wishes for your trip to Memphis. We will be thinking of you all. Love you!

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  10. What a great story. I loved the pictures, and creative writing/art work Kayla did. She must get her creative side from you. You do a great job with this blog. Sorry to hear about your paster =(. That is too bad. God's plans are so mysterious. But you are fighting to spread awareness, and that is so great. Kayla seems like a warrior, caring, smart and wise. What a great girl. I hope everything continues to go well for you guys. We will keep you in our prayers. Love Krysta

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  11. Thank you so much for the update on Kayla, she continues to be in our thoughts and prayers daily. She will always be one of my greatest heros,and her strength and bravery is a testament of the kind of person she is inside. The apple does not fall far from the tree, as for the warrior Mom and Dad, you continue to amaze us with your own inner strength. The story you told above, and the pictures... what a reminder to us all how important it is to find that cure! Kayla looks absolutely radiant in these pictures. Love to you all. Paige K

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  12. You could guess how delighted I was to see Kayla's artwork...doing what an artist does...looks, remembers, and records in her own voice. Kayla's is full of color, texture, shapes, lines and delightful details! Love it all....and what fun to see the new hair, lashes and great eyebrows coming in...beautiful. Looking more like mama? As always, sending love, hugs and hopes for all you wish for at St. Jude. xxoo AuntieAnn

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  13. Congratulations, Denny!
    xxooAuntieAnn

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  14. I only know your family through this blog and the emails thoughtfully and emphatically sent by friends and friends of friends. You are all an inspiration. Godspeed, and strength and continued steps in a healthy direction: One after another after another to victory over this...and health for Kayla.

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  15. I only know your family through this blog and the emails thoughtfully and emphatically sent by friends and friends of friends. You are all an inspiration. Godspeed, and strength and continued steps in a healthy direction: One after another after another to victory over this...and health for Kayla.

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  16. I only know your family through this blog and the emails thoughtfully and emphatically sent by friends and friends of friends. You are all an inspiration. Godspeed, and strength and continued steps in a healthy direction: One after another after another to victory over this...and health for Kayla.

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  17. I only know your family through this blog and the emails thoughtfully and emphatically sent by friends and friends of friends. You are all an inspiration. Godspeed, and strength and continued steps in a healthy direction: One after another after another to victory over this...and health for Kayla.

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