Thursday, December 4, 2008

Happy Child, Mad Wife, and I Just Keep Plugging Along

I can't tell you how excited Sydney was yesterday to come home and find almost 400 ornaments on her Lunch for Life Giving Tree. That was quite a large one day jump. I know of many others who also sent in checks whose names and ornaments are still not up in the tree. Thank you so much for your help in making such a big change in one day. We still have a ways to go. She will not rest until presents begin to appear under her tree. But ,I can tell you, she could not be happier with all of the growth on her tree.

I, on the other hand, am thankful for the lunches because it means more research. It means we are closer to a cure. With just the donations made on Sydney's tree we can get one child on trial through the NANT that would otherwise not be able to. That means another child can receive cutting edge MIBG treatment, IV Fenretinide, UltraTrace, BSO/Melphalan, CEP-701, or one of the other exciting and promising drug combinations that will be coming out in the next few weeks. That is real. Those are real options that a child would not have had if it were not for the lunches on Sydney's tree. And yet, that is just one example of how those lunches will be used. Thank you. And I don't know what child will benefit. But, I can guarantee you that sometime this year a child will be put on trial (that would have otherwise been turned away) and the family will never know that the only reason it was available for their child was because of those lunches. But it happened. And it happened here. Thank you.

I have received several emails of concern regarding Lynley. I thank you for that as well. She has been to the doctor and unfortunately, at this point, they still can't find anything wrong with her. That is frustrating. Although the pains have started to subside the original issues that sent her through all of these tests still remain. Medication seems to be helping with the symptoms but it is still not under control and worse, although she has been through a battery of tests, we are no closer to a diagnosis. We have ruled out a ton of causes but we still do not have an answer. That is still concerning given that her condition is certainly potentially life threatening. We continue to search for answers.

Finally, twerps are great! But isn't that how they should always be? Full of energy, excitement and, well, twerpishness.

I am off to purpose.

1 comment:

Laurie said...

Just curious ... has anyone ruled out endometriosis as a cause for Lynley's health issues?

Laurie, the faithful reader in Nashville