|05-06-2009, 10:06 PM||#1|
Join Date: May 2009
Make A Wish September 5th - September 11th
I am very new at this and to be honest a little nervous about starting this. I also want to say to everyone that I have enjoyed reading everything. I have learned alot from you all. I feel like I know several of you. I have laughed with you and cried with you. You have given me hope.
As I say we are just starting on our wonderful adventure. We have found out we are approved for our Make a Wish. We will meet with our volunteer on Monday May 11th. My son Lucas is so excited!! He has already told me I know what I want to do on my wish. I want to go to DisneyWorld and I said that sounds great to me!!! So we are very excited. We found out around April 9that we were approved and it has just put an air of excitement in our home. And after ready several of your stories that has just added to my excitement. We of course do not know dates but we do know it will be at least the fall. Lucas' doctor does not want him to travel until after chemo is over and our last chemo should be the end of July. We know we have to have three dates so we are hoping sometime in September. I not sure how long it takes to get your dates approved. I guess you all can help me out with some kind of estimate of how long it took you.
Well I guess I will share with you of how we got here. In February of 2008 my son started having leg pains. And we just thought it was leg cramps or growing pains and then he would just walk and he would just fall into the floor screaming with pain and he would just stay and scream in pain until the pain would pass. We would take him to doctors and no one knew what was going on. To make a very long story short after two months of searching for answers we finally found a doctor who would help us. Lucas my 7 year old had a biopsy and we found out he has LCH (Langerhans Cell Histiocytosis). LCH is disease caused by too many histiocytes, a type of white blood cell, that cluster together and destroy healthy tisses and organs such as skin, bone, lung, liver, eyes, ears, the central nervous system. At this point it was in his L5 vertebra and it was destroyed that was the reason for his back going out. Then within a month he started complaining of an ear ache. Within a few days we had a golf ball size knot on his jaw. That has destroyed b one in his jaw bone . A few week later he started to walk funny and he developed the third lesion that had put a hole in his pelvic bone. At this point he had started his treatment 12 months of chemo (we started in July). We started out once a week for 12 weeks and then we go every three weeks. He also has been taking alot of steroids. So needles to say we have had an adventure. He seems to be responding well to his treatment. That is how we got to Make A Wish. It has been a hard 14 months and this will be a great way to celebrate with what we hope is an end to treatment (which we will not know for sure until he is scanned again in August). We also have a four year old son Alex. It has been hard on him. I know that he feels like he has been put on the back burner. When we go to treatment it is about 2 hours away. So we are on the road for at least four hours. So Alex has to stay home with family. Also everyone always stops and checks on Lucas and there stands Alex. So this will be a great experience for Alex too. I have enjoyed the pictures and stories of the siblings. This has encouraged me for Alex.
Sorry I went on forever. But I will post after we meet with our volunteers on Monday. Please feel free to give me any advice. I need all I can get. It seems these days I do not think to well. So I need help.
Thank you for reading my post.
Last edited by Matt1026; 07-02-2009 at 09:36 PM.
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