Another Step Closer To Getting Makhi Off ACTH

I just wanted to update everyone on Makhi. Things seem to be going to smoothly with Makhi's withdrawal from ACTH. I am more than happy to report that he has moved from .08 to .06 today and i have seen so signs of tremors or eye movement in Makhi. KNOCK ON WOOD!!!!! I could not be happier and I know what a blessing this is. Makhi has fought so hard to get where he is today and I could not be a prouder mom.

His speech has come so far.... The thing he keeps spitting out of his mouth is amazing to me. Boy his speech therapist is really gonna be happy when Makhi returns to school Aug 31.

Makhi has been spending his summer learning to ride his bike,swimming at the pool & has gone to the lake a few times. He also went for his 1st canoe ride with my best friend Jen and her son Austin. He was so proud of himself. He was sure that me and his sister where watching him the hole time...LOL He has also accomplished potty training with also is another hugh step in his life. When i really sit back and think about all he has accomplished in the last year it truly is amazing.





There is a little boy named Caden is cererbrating his 4th birthday today. His condition is not getting better. Caden and his family are in desperate needs of prayers right now. Here is a note that his mom has posted to his carebridge page

Thursday, July 30, 2009 4:25 PM, CDT

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Hi to all. Thank you so much once again for all your prayers, calls, email, text, and ongoing support. This is a strange place in our lives to be - not really knowing what each day will bring, and yet, isn’t that really how all our lives truly are. Anyway, we are thankful that God has blessed us with all of you.

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As I type this update, Caden has finished his chemo for this go-around, and is receiving a blood transfusion due to his really low red blood cell/hemoglobin counts. After this, he will be able to go home and get ready to celebrate his birthday on Sunday!!! It will be a small celebration since his Make-A-Wish (which the boys still don’t know about) will be the following week. Please be in prayer that all goes well to allow the trip to goes as planned. Caden’s blood counts are due to be their lowest right when we plan to leave. But, as God would have it, I’ve been in contact with Dr. Elnis, and oncologist in Orlando who said that they are use to seeing Make-A-Wish kiddos when something comes up, and so I have his groups phone number.

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So, the plan…our plan…our hope…(is it God’s plan)…Caden saw the orthopedist on Tuesday, who would like to put pins in Caden’s shoulder and a screw in his left hip in order to stabilize these areas to prevent breaks and/or further breaks. The concern is whether we put Caden in “more” pain at this questionable time in his life and whether his little body can handle the healing process. If we do go ahead with this, he will have surgery the week we get back from Orlando. We’ve also been in touch with Dr. Sholler out of Vermont, who said that she felt Caden qualified for one of her clinical trials. So, the hope is that the following week of August 24th, he will begin the treatment protocol for this study. Please pray that the chemo that Caden is currently receiving will shrink the mass we found under his jaw (possibly a lymph node or gland) as well as any other masses we cannot see. Because this is not the “full strength” chemo he would normally receive, please pray that it is effective at stopping the cancer.

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We are truly in F.ROG. Mode (fully relying on God). There is nothing we can do to save Caden. If Caden’s life is extended it will only be because God moved all things, all treatments into place at the right time to work in his little body. Please continue to pray for Caden and us. At no time do we want to bring additional and unnecessary pain to him just so he can stay with us. Thank you for everything.

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(Just a little background on today’s chosen verse. On the Friday we were in New York, after the disappointing news received, Caden and I just spent the night in our room. At one point, I think Caden could tell I was sad, even though I try to hide it from him as much as possible. At some point the looked at me and said “I don’t want to be dead. I want to stay with mommy and daddy.” This made stomach drop and my heart ache. I told him that if he was willing to fight this cancer that daddy and I would fight right along side him. We would fight until he said he was tired of fighting. He looked at me and said “Why God not fight for me?” I was speechless not knowing how to explain this to a 3 year old when I wasn’t sure myself. Fast-forward to last night. Caden and his brothers were watching “Kung Fu Panda”. At the end, Caden was doing his version of kung-fu as he sang the song. There’s a part in the song that says “not only do you have to fight, but you have got to win” which I told Caden he had to against the cancer. He turned to me and said while karate chopping, “With me and God, we beat this cancer.” Sweet boy.)

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12 When the angel of the LORD appeared to Gideon, he said, "The LORD is with you, mighty warrior." 13 "But sir," Gideon replied, "if the LORD is with us, why has all this happened to us? Where are all his wonders that our fathers told us about when they said, 'Did not the LORD bring us up out of Egypt?' But now the LORD has abandoned us and put us into the hand of Midian." 14 The LORD turned to him and said, "Go in the strength you have and save Israel out of Midian's hand. Am I not sending you?" 15 "But Lord " Gideon asked, "how can I save Israel? My clan is the weakest in Manasseh, and I am the least in my family." 16 The LORD answered, "I will be with you, and you will strike down all the Midianites together." Judges 6:12-16

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Hugs,

Lexie

PLEASE CONTINUE TO PRAY FOR CADEN AND HIS FAMILY!!!!! YOU CAN KEEP UP ON CADEN BY VISITING http://www.caringbridge.org/visit/cadenledbetter

THANKS FOR CHECKING IN ON MAKHI AND I ASK THAT EVERYONE PLEASE PRAY FOR ALL THE CHILDREN FIGHTING THIS TERRIBLE DISEASE NEUROBLASTOMA AND OMS