It takes a village

It’s really hard to describe life with a special needs child. No one can truly understand what it’s like unless they have a special needs child. I describe it as constantly treading water. Then again, having children regardless of challenges is stressful and I’m sure parents of typical kids also feel like they’re treading water most days.That’s why the proverbial village is oh so important!  … More It takes a village

Big Boy Charlie

We constantly tell Charlie he’s a big boy and should act like a big boy (i.e., no crying when mom walks away). Now our actions met our words as Charlie has his own big boy bed and big boy room. He’s gotten too big for the crib, plus it’s hard to lift him over the … More Big Boy Charlie

No News is Good News

Summer has come & (almost) gone since my last blog post around Memorial Day weekend. We’ve been busy enjoying our warm Wisconsin summer. Charlie started the trial drug (Alpelisib/BYL719) Saturday of Memorial Day weekend. Three months later I am happy to share that no news is good news. He hasn’t shown any adverse side effects. … More No News is Good News

Trial Drug BEGINS

It’s here! The trial drug we’ve been praying for is in Milwaukee. Charlie is scheduled to start it Saturday!  I won’t feel 100 percent confident until it’s in our hands because this has been a bit of a roller coaster. The drug is an unapproved breast cancer drug called BYL719. Here’s a link to some information regarding why someone … More Trial Drug BEGINS

APPROVED

Thank YOU ALL for your prayers because Charlie has been APPROVED to trial an experimental drug!!! I am in shock. This is amazing news. Just to refresh your memory from my last blog post, this drug (BYL719) is a breast cancer drug, but it has not been approved by the FDA for anything at this … More APPROVED