Monday, December 5, 2011

Our Family of Special Needs, a Special Love

We are a family of 6, and we have been Blessed to have 4 children with special needs!  Yes, they are all ours biologically, and no they do not all have the same diagnosis'.  

Our oldest has Degenerative Disc Disease and has had 5 spine surgeries since he first broke his back (during a baseball game) when he was 14.  He had MRSA, a staph infection resistant to antibiotics, in his spine and is allergic to the two antibiotics proven to fight MRSA....We almost lost him.  God took control.

Our middle son has Autism (high functioning), ADHD (severe), Sensory Integration Disorder (doesn't feel pain), and EOE (allergic esophagitis).  There is no cure, nor treatment for the EOE.  It is enzymes deteriating his esophagus and causing scarring (high risk of cancer).  

Our youngest son has an inoperable brain tumor in 2 parts of his brain stem (pons and medulla) and deep in his Cerebellum.  He was diagnosed with Gangliaglioma (cancer) by CHOP, the Dean at Loyola, and many other reputable hospitals.  He was too young for radiation, and it was inoperable (shape, location) so we put a port in and waited for it to grow more aggressively so we could treat ALL the cancer cells (it was thought to be our only hope!)  The cancer grew slowly for about 6 months...then stopped!  God has given us another miracle!  The tumor is still there, but remains stable/not growing.  Inexplicable in the medical world, but a miracle in our world!   

You have met Kayli in the video.  You can see her many steps to recovery and grace in her videos on You Tube...under the channel kellywhistler1.  Thank you for the thoughts and Prayers!  God Bless! 

10 comments:

  1. God bless you all , I respect you both as parents and the faith you have ....I will keep you in my prayers always.

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  2. I adopted a little girl who had Trisomy 13. She is thought to be the oldest child ever with this condition. She was 15 yrs old when she passed away. She had G-tubes, brain shunts, wheelchairs, braces, etc. She took about 100+ seizures a day.
    When I picked her up the day I met her she was 12 yrs and 9 days old and weighed 21 lbs.She could not walk - she combat crawled. She did not communicate in any way - she just was "there".
    In time she could walk with someone holding her hands, could eat most foods, use a communication board, laughed, clapped with joy (her middle name we gave her) and even would yell at us when upset lol ;)
    My prayers go out to all of you! Blessings! Beth :)

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  3. your story touched my heart, i could not help but smile to look at her knowing how special she is to have been blessed in such a big way by god, baby Kayli is a living proof that the lord and touched her. may the lord continue to bless her and your family .

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  4. My prayers are with you and your family. Keyli is an incredible baby girl, who must have the will to love, and her fight doesn't seem to fade. I can't tell you how touched I am, and wishing your family and Kayli all the best. My families prayers are with your family.

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  5. Just thought I would recommend a book "The China Study." Lots of new real-life studies to help cancer. No affiliation, just blew my mind.
    Take care and be strong

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  6. What an amazing family and a tribute to God's love. God knew the perfect family for all of these Children to be born into... What amazing parents...

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  7. I agree mhill. This family is very strong, and very close it seems. Great way to be, in each others times of need.

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  8. Brysinski is a documentary on netflix about this type of brain cancer and how he is treating it, I think you should watch it...he is doing amazing things without radiation. I hope this helps...

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  9. For your youngest son, please contact Dr. Stanislaw Burzynski. He has an alternative treatment that has in cases proven far more effective than chemo, radiation or any other treatment known to the cancer world. He has been stuck in the FDA clinical trials for years because it's more effective and would essentially reduce the need for other treatments. The science behind it is sound ... re-introduce the cancer cells death sequence, and he is in a study now with the FDA for brain tumors. Hundreds of patients can't be wrong, seriously, and the worst they can tell you is "no" or "It won't work for that". I urge you to look into it and decide for yourselves. www.burzynskiclinic.com
    Best wishes to you and your entire family. <3

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  10. Just reading your blog trying to get some hopeful information on trisomy 18, God Bless you and your your family, that is a lot to deal with and a lot of information to keep straight. Lots of prayers and love sent your way.

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