A Day In The Life (rescheduled)
RESCHEDULED! Yep… that’s right, Jake’s surgery is rescheduled for Friday, Feb 15th! Our Doc has hurt his back and feels he needs a couple of days to heal before he stands for 12 hours. WE AGREE! So with all the other prayers we have swirling, please pray that Dr. V heals and is ready to go Friday. We need steady hands and full focus on Jak
e. Since I have your attention, thought I’d share a couple of pictures. Also, more than a few people have mentioned that reading Jake’s blog is hard, that they can’t read it anymore. I understand. I know what I
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write is not easy to read. I want it to be that way, to be real. I want it to hurt. There is a song that says “Oh Jesus, friend of sinners, break our hearts for what breaks Yours”. I want the world to know 
that these kids endure things that we can’t imagine, yet they get up and face each new day with playful smiles and kisses and their childhood dreams in tact. This world is one of unspoken things – and it shouldn’t be. It’s sad and scary and there is loss everyday, but there are such miracles everyday too. If you have to leave the blog for a little while, that’s OK. But please come back every once in a while. Check in so you don’t miss what God is going to show us! Jake WILL be healed!!! Now… on to a day in the life and pics…………. when we head 
in for TCH Clinic days it means we see friends, we get pokes and some days are stressful and full of tears but some days are calm and happy and short. Emotions can run high, there can be terror and pain but there is LOTS of love & understanding and hugs & fist bumps. Life continues and there are good times, even for cancer kids. There is playtime, with giggles and hall races and a treasure chest full of toys after a big, bad “poke”. There are the most gentle, wonderful angels that walk the halls of TCH. They are friends, 
nurses, doctors, playmates. I have pictures of our latest Clinic day. Look at Jake and Jacoby playing in the space ship playroom – running, tagging, belly-laughing, screaming, falling on the floor and bouncing off the mirrors. All the things little boys should do (and some things Jake shouldn’t be doing with a fr
actured vertebrae but who can stop this much fun???). Then, there is Saraben, our Child Life Specialist. She can get to Jake when he is in a place that no one else can reach. She is brilliant, genuine, steadfast, all heart, and FUN! When Jake knows he has hit his limits or is about to face something he can’t handle, he specifically calls FOR HER… that says it all. Hope you can see just a little of the special people and “normal” days that are blessings in the midst of this storm and so very treasured! We send our love, and hugs, and blessings to them and to all of you, for you have our deepest gratitude for sticking with us and for sharing Jake’s journey with so many! God’s blessings and Happy Valentine’s day… may it be full of love & laughter. (If you want to hear the song I referenced… http://www.youtube.com/watch?v=BY6VAy9y_iQ )Trackback from your site.
Comments (8)
Denny and Robin Tutwiler
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We are thinking of yall. Robins has gone through months of chemo and a stem cell transplant. (We are at day 92 post transplant) When they access Jake’s port do they use lidocaine? (Im sure they don’t want to put in a central line as they are worried the little kids will “mess” with them). Also..whenever Robin has a bone marrow biospy, she gets a couple mg of Ativan. As a parent I understand the worry of giving your child more drugs, but if they can give him a little it works for anxiety and nausea. We are thinking of you, praying for you and wishing the best.
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Denny and Robin Tutwiler
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We are thinking of yall! We UNDERSTAND since my wife Robin has gone through months of chemo then a stem cll transplant. Are the nurses using lidocaine when they access Jake’s port? And we guess they didn’t give him a central line since little boys play with things? :). Also-one thing that helps is Ativan–if they can give him a little it might help with nerves (as a parent I understand how you don’t want them giving your children MORE. Drugs :/. Just some ideas, good thoughts and prayers sent your way. Denny (friend of Erin)
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Tina Tannery
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Our thoughts and prayers are with your today and every day. Wishing your doctor a speedy recovery so he can take care of Jacob. You are surrounded by wonderful friends, family, and love.
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Becky
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Thank you for sharing your journey and for opening people’s eyes to the reality – amidst pain there is joy and we will be here with you through each step, cheering you onwards! Becky & The Gladiators
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Shirley Hamilton
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Thank you for posting all the struggles, the joys and the feelings as you are going through during this time of your life with Jake. Yes it is heart wrenching to read and brings tears, but what a witness!!! It also brings the feelings necessary to bow before the throne and beg for a complete healing, and to praise our Father in Heaven, that He loves us enough to answer our prayers. We are trusting God for a complete healing for Jake and a closer walk for you and your family. You are a witness for us all, showing where and when we are weak, Jesus lifts us up and carries us. May God continue to bless you with the abilities only He can bestow on us. Praying for staff as well, may God guide their hands in everything they do.
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Heather Stokke
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Can you give us Saraben’s contact information? I would LOVE to send her a word of appreciation for all she does. It really is amazing how God works through people!! Mardon, your journey has brought me to tears during the uncertain times, and has made me jump for joy when you share good news! Thank you for sharing this experience. I know it is the hardest challenge you have faced, but it gives the rest of us hope and faith that God can prevail in all circumstances.
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Carrie M
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Not going anywhere – will always be right here for you all!
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Stephanie Holland
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Thank you for continuing to post. I have fallen in love with your spirit, and your precious baby! If you and Henry and Jacob and your family can walk this journey, I will thankfully read it and rejoice with you! Bless you for opening yourself up to us! I will be praying for you all on Friday!
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