July 30, 2011

It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up -- that we will begin to live each day to the fullest, as if it was the only one we had.

- Elisabeth Kubler-Ross

Another person looses their battle to cancer yesterday.  Rob Grimshaw, another Las Vegas resident who recently went to the Burzynski Clinic for answers.  He was recently approved, but had fallen ill after his return from Houston.  Rob also had a very rare form of cancer called epitheloid carcoma of the skin.  Our prayers are with his family and glad that Rob is no longer in pain.  Here is the link to his blog:

www.robgrimshaw.blogspot.com

Today I sit here with an empty house with a little peace and quiet.  Ryan is out shooting guns with friends out in the desert and Kyle & Kass and friends are enjoying lunch at Buffalo Wild Wings aka BDUBS for the Donation Fundraiser they are having for her today.  I can't tell you last time I had a moment to myself with my own thoughts; life has been a whirlwind these past two months.  Even with this much time that has passed, I still feel like we are living somebody else's life, a bad dream that we will wake up from soon. Our days are mostly good, but we also have our bad days, those are the days when getting out of bed seems like a feat.  Day by the day we struggle to find normalcy and some kind of routine around Kassidy's treatments, blood draws & dressing changes.  It's been a little harder since Ryan is back to work, so now I have to find what schedule will fit Kass & I for the long run this fall.

Thursday, we met with Dr. Milne, the MD that will oversee Kass every month to do her physicals and didn't hesitate when we asked him about signing the 1572 form which I spoke about in the previous blog entry.  What a wonderful doctor, he sees the big picture and is excited to embark in this journey with us.  What a blessing!  We are very fortunate to have found him, thanks to the Appelzoller family which referred him to us.  

Dr. Milne will also help us with getting Kass off decadron (steroids) into a more natural anti-inflammatory.  Kass in her own words about decadron "I'm not a fan!".  She hates that way it makes her feel and most of all makes her look.  She has gained 10 pounds and it also has given her swollen cheeks.  She says she can feel her cheeks jiggle when she walks and sometimes in the evening they hurt.  

A couple weeks ago I spoke to Jason Merkle's mom, a mom of a previous patient of the Burzynski Clinic, who told me when her son Jason was on the antineoplaston treatment as well and they had opted to not use steroids because of the long term side effects.  That instead she used a combination of bromelain and inflavanoids instead.  She also told me after Jason's treatment she also found a supplement called Boswella.  According to Dr. Milne with the Burzynski clinic's approval we might be able to use a combination of those instead of decadron.  Her new Las Vegas oncologist also agrees that we need to wean her of the steroids as well, which today she had her first less dose and so far so good.  Again, our biggest worry is her having major seizures as the tumor starts to breakdown; that is why she needs some type of anti-inflammatory.  Here is the link to Jason Merkler's story: Very promising!

http://www.burzynskipatientgroup.org/jason-merkle

On Friday was an extremely busy day trying to get caught up on everything, but in the evening we headed over to the Pursel's for the Dance Party fundraiser.  It was great to see all the kids that came to support Kass and we are so thankful to the Pursel's for offering their house for the event. We had a lot of fun watching them dance and putting our moves in the mix.  Indeed a good day!

Some of the kids at the dance party.

Kass with her buddies Alex & Pamela!

Tonight we hope to see you at BDUBS!