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OT: Prayers for Ayden


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Still praying!

Have to say as a word of encouragement, not the same situation but my boss had blood cancer one of the worst kinds. He went through a blood transfusion in which he was the donor they just ran all of his blood through a process beyond me, to remove the cancer. He is now 5 years cancer free! The treatments keep on advancing (beyond the devices we were building at my last job even though they were still in their infancy and at the time cutting edge) There is always hope! And more importantly there is always God!

 

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Not much to report back on. We spent 5 hours at Riley hospital, meeting with Dr's and gettting some lab work done. Now we wait for results and go down the road that is laid out for us. Thanks again for the prayers and support. After a long day all Ayden wanted was some Sushi and a starbucks Frappe.  I am blessed to have such an amazing inspirational little boy. I learn more and more from him every day. 

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59 minutes ago, Billingsley99 said:

Not much to report back on. We spent 5 hours at Riley hospital, meeting with Dr's and gettting some lab work done. Now we wait for results and go down the road that is laid out for us. Thanks again for the prayers and support. After a long day all Ayden wanted was some Sushi and a starbucks Frappe.  I am blessed to have such an amazing inspirational little boy. I learn more and more from him every day. 

Thank you for the update my friend. Continued prayers for Ayden and your family. You are always in my thoughts! 

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  • 2 weeks later...
  • 2 weeks later...

Just wanted to take the time to update everyone on Ayden's health. The Dr. called this morning and the latest labs confirmed 2 separate  mutations and confirmed the diagnosis of Schwachman-Diamond Syndrome. We will see a specialist on Jan 21st to go over the course of action and to prepare for the road laid out in front of him. Please continue to keep him in prayer and we really appreciate all that you do. I will keep you all informed as we learn more. Thank you and may God continue to bless each of you. 

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@Billingsley99 man I take a big breath in and try to think of something to say.  Know that you are continually in many prayers.  Both my grandfather's battled some disease, though later in life.  I feel like a promise that healed my broken heart was 1 john 5:4 For whatever is born of God overcomes the world; and this is the victory that has overcome the world-- our faith

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6 hours ago, Billingsley99 said:

When we told him the results yesterday he got really sad and asked if he was always going to he so short. We have always stressed to him it's no big deal but it bothers him a lot. 

We are meeting with an endocrinologist to discuss the possibility of HGH. 

Thank you all for continued prayers. 

Praying it works out for you all! Our youngest had 7 1/2 years of HGH shots daily and grew 7 inches beyond her projected final height which made all the difference in her quality of life!

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  • 3 weeks later...

Time for a little update an prayers. Ayden will see a specialist tomorrow and undergo so more testing. This Dr. specializes in Schwachmann-Diamond syndrome. Please keep him covered. My mother in law will start chemo tomorrow as well, she was recently diagnosed with stage 4 cancer.  Please pray for her and my amazing wife as it has been really stressful on her. thank you for all you do. 

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