Favorite Hannah Picture

Favorite Hannah Picture
"Yes, the park!"

Hannah Ballerina

Hannah Ballerina

Play Time

Play Time
"Go super fast!"

Hannah's Room

Hannah's Room

Happier Hannah

Happier Hannah

Hannah sleeping 4-13-10

Hannah sleeping 4-13-10

Preschool Friend's Art

Preschool Friend's Art
Yeah! Friends!

Tuesday, May 22, 2012

Wonderful Family; Extremely Rare Condition

http://www.giveforward.com/casenpcifund


CJ Buswell, is a guy I have known for years now.  He works for one of my customers and is the nicest guy you could meet.  Every time I would see him, he would ask how Hannah was doing.  He has a daughter near to her age.

  I remember hearing that he and his wife were having another baby. I was so excited for them.  Just 12 weeks ago they had a beautiful baby boy named, Casen.  They knew right away something was wrong. 

Their gorgeous baby had a cluster of very obvious blood vessels around his chest.  After months of agonizing trips to Children's with very puzzled doctors, they found out why. 

Casen suffers from a rare condition known as Plaque Type Glomuvenous Malformations, which is caused by a missing gene. He is only one of 14 people in the world to have it.

 Doctors here don't even know how to treat it.  There is a doctor in Belgium with some experience and they are hoping to get there.

 I am posting a link to a fund raising web site.  It also has updates on how Casen is doing, as well as a better explanation of his condition.

 CJ and his wife Jenna are wonderful people.  If you can help, please do.

Pesky Blood Counts

It is now May, and we are still struggling with blood counts (ANC) that are too high.  Hannah has been running about 2000 too high for several months. Her doctors keep increasing her chemo amounts trying to bring that number back down.

 Last month, Hannah had a bit of a break through, in that her ANC came down 1000, but with still a 1000 to go. For us, that was great news because it meant we didn't need to increase her chemo again.  She is already on over 100 % dosing for all her different chemo medications.  She suffers so much with the nausea. I just couldn't imagine giving her even more.

At Children's, waiting for labs.


 We also, got some good news in April about her liver.  We found out in March, that her liver was starting to under perform. Hannah's lab work showed a liver function number that was much higher than it should be.  Liver issues make giving chemo difficult.  We need that to kill the cancer!  So, I was worried.  However, at her check up in April, her liver function numbers had gone back down to normal. Definite improvement! Her next check is June, 1st. I am very hopeful that the downward trend of counts, continues!