Thursday
The girls are in school for a couple of hours this morning, London is playing Star Wars Legos at my feet and Boston is relaxing in front of Dora (apparently he had a long night and is a tired boy). I am leaving at 12 noon to take Rachel to Children’s for her MRI under sedation, the last of a several tests that I put her through for a long time. Whats the point of getting other tests right now, like the ERG? We already know what she has, we can pretty much guess what the ERG will show. She needs to be a kid as much as she can be right now. Once we get home (no matter how late that is) we (the 6 of us) are going to have lobster with my parents, my oldest brother and his wife/3kids and my middle brother.
Susan, my friend in Colorado who has three children (the oldest is the boy who died of cancer 2 years ago) posted an entry on her blog about Rachel and included a picture. I can’t look at it or even recall it in my mind without the tears welling up in my eyes. Rachel looks so “there” and so “present” in that photograph. The personality changes that have taken over her since she was 4/5 are overwhelming to me when I consider this all “in retrospect” and recall just how sweet and kind and gentle she was. Here is Susan’s entry about Rach: http://suzeo99.blogspot.com/2009/07/rachel.html
This kind of brings me to something else that I thought of this morning. If anyone who has met Rachel could forward me any full resolution pictures they have of her because I want to make some photobooks. I lost a lot of my older pictures a while back and would appreciate your help in getting me some new images so I can have some prints made. Its a long shot but I know there has to be some out there.
I am sleeping okay but you go to bed with it and you wake up with it. John is doing better than I am right now… But I really don’t think this has set in for him as I am the one who has done countless hours researching. Thanks for reading.
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
(((HUG)))
Kate, I just don’t even know what to say right now. There are no right words I can say to ease what you all are going through. I’m stunned. I keep thinking back to when things were different, you were helping set up CK, helping me through Dillon’s surgery. And the time you all went to pick up Alimentum for him, and the bee sting. It just doesn’t seem real. I’m so, so sorry Kate. I know though, that you all are going to give Rachel more happiness and love than she will know what to do with. She will never, ever doubt how much her family loves her.
I have a six yr old cousin with Batten’s and it is a horrible disease. Her parents have even been to China for the stem cell treatments offered there. Here is her Facebook page……http://www.facebook.com/home.php#/marypaytonsmiracle?__a=1
My heart goes out to your family.
That picture is really precious. My heart just aches for you and for her.
Lots of hugs for you! I wish I could say something that would help, but right now just lots of hugs for you and Rachel and your family. We at COmoms are here for you, to listen and offer prayers and words of encouragement.
((Kat)) big hugs
Been thinking about you often through the day. My heart really is broken for you!
Just wanted you to know I’m thinking of you guys and praying for Rachel (and you and John, of course). Hang in there! *hugs*
I read about you on the CK website and just felt like I had to write something. I read your blog and cried all the way through. There are no words that I can say except how sorry I am for your child and your family. Life is not fair and I don’t why bad things happen to good people. Please know your daughter is in my prayers.
Hello Kat, I am sorry, this feels a bit of an intrudence into your blog but I get alerts through google of anything new on the web that includes the words Batten disease. I am so sorry to read about your daughter Rachel and understand the torment you are going through. My daughter was diagnosed with Juvenile around the same age 11 years ago. You will probably not feel it right now but there is hope , firstly that Rachel can still enjoy life at this young age but also there is alot of good research going on both in the USA and the UK( where we live). I dont know if you get to see my email address but if you would like to and you are able too please do not hesitate to contact me .
Thinking of you at this very painful time
Irena
….There is also good research in a number of other countries too…Germany Finland ….didnt wish to omit them . I have attended many of the Scientific conferences and the last one was in Hamburg in June
What you and John must deal with is unthinkable!!! I did take a picture of Rachel and my daughter. They were having so much fun together. My warmest thoughts are included with this message
When we get moved into our house and I have access I will send you all the pics I have of Rach. I know there are a few from different meet ups and whatnot on the server that is currently in storage. Thinking of you!(((HUGS)))