LLS Light the Night Walk 2014

Greetings Friends :)

Team Invictus will once again be lighting up the skies of San Francisco next week as we participate in this year's LLS Light the Night Walk. If you would like to join us or donate, please visit our team page here

pages.lightthenight.org/gba/SanFran14/TeamInvictus

Thank you so much to everyone who has already donated!!!!

Aloha!

Nicholas and I just returned from a fabulous and blissful week in Kona with Nana and Uncle Brendan and Uncle David.  It was a near perfect vacation; the only deficiency was Daddy's absence.  We swam, we ate, we relaxed....

Thank you so much to all who made this trip possible!  It was totally reinvigorating and so good for all of us.

(last year, same chair!)

we liked to start the day with milkshakes :)

then burn them off playing with uncles....

then take a snooze.

just one of the guys.

Nana is such an excellent photographer.

One day Nicholas got to tie die a t-shirt for himself, just like Teddy's!!

bff.

(so much meaning in this pic.  nicholas was uncle david's shadow during this vacation!)

thank you for finally agreeing to smile!!

Another Treatment....

Today I received my first photopheresis treatment in an effort to control my graft vs host disease and get me off steroids.  The simple explanation of how this therapy works is that certain white cells are separated out of my blood through a centrifuge, and then exposed to UV light and put back in my blood.  The hope is that this will suppress these cells' (bad) reaction to the foreign environment (me) that they are in.  It's a painless procedure (they saaaay), except that I'm stuck with one ENORMOUS and another not-as-ENORMOUS IV needle to make this treatment happen.  

This was actually my second attempt at the procedure....the first one, which took place two weeks ago, was a bust when my blood pressure dropped to 70/50 within the first 10 minutes and they had to abandon the treatment.  All went well today, however, and I actually got a great nap in!

I'll be receiving photopheresis twice a week (for a few hours at a time) every other week for quite some time.  Hopefully, we'll be doing this for about a year (I only say "hopefully" because that would mean that the treatment is having a positive effect.  If it doesn't work, we'll know in about 4-5 months).  However, the photo nurses are really fun to hang out with.  And, the Hematology dept has just moved to a totally remodeled floor that is so much better!  There are views!  and tvs in the rooms/at the chairs!  and a coffee machine!  

There it is!  The coffee machine!!

New Photopheresis room. 

Another treatment room with a fabulous view (the GG Bridge is in there amidst the fog)

A treatment chair

View for a treatment chair!

Here I am during the first attempt, posing with photopheresis machine :)

On another note, I gave Nic a little haircut over the weekend.  He was really resistant to going again to Daddy's place, so I took matters into my own hands.  I really just trimmed up the sides and neck.  And then I followed him around for the next couple days snipping more and more :)

Mommy time

Nicholas has been a little delayed in receiving some of his vaccines since I'm immunocompromised (and some vaccines contain a little of the live virus....= risky for me).  In preparation for preschool in September, and in an effort to be an upstanding member of society, he finally received his MMR vaccine just over a week ago.  To be cautious, I had to be away from him for a week.  So I went on vacation.

Nicholas was, understandably, a little upset that he couldn't go on vacation too (after all, we had just gone on one to AZ).  But he eventually seemed to accept that this was just a "mommy trip."  I went to my parents' place in Gig Harbor, WA, and was joined by my mom.  Here are some pics....

(breakfast of champions)

I'm the proud new owner of a set of.....

Punctal plugs!  These tiny silicone plugs were placed into my tear ducts yesterday in hopes of relieving some of my dry eye symptoms (a common side-effect of stem cell transplants).  It took less than a minute, and was painless (no needles!), yet nevertheless made me woozy :)  Anyway, I'm still waiting to fully evaluate them.

Nicholas and I went to Arizona last week to visit Nanny, Grandy, and Aunt Whitney.  We also drove down to Tucson one day to visit Auntie Susan and Uncle Don!  Other than that, our days were filled with lunches out, swimming, splashing, cooking and playing!

And we made these Almond Blueberry Scones....OMG so delish!

Nico's Nibbles

Nicholas definitely shares Daddy's love of the kitchen.  He recently wrapped up a 10 week cooking class at Peekadoodle that he really enjoyed, so now I try to do some sort of cooking/baking project with him once in a while.  He especially loves making cookies (I buy prepackaged dough that he can "cut" and "make" all by himself....I actually highly recommend Immaculate Baking Co. dough!).  He also recently discovered the SEVENTEEN jars of sprinkles in our pantry, and he has used each and every one of them during his endeavors!!

Nicholas and I also started SoccerTots on Friday mornings and within ten minutes he reported, "Mommy, I LOB ("love") soccer!!!"  We play on the Marina Green with views of Alcatraz and the Golden Gate Bridge.....we are lucky :)  

Just a couple more...

For Father's Day, we sailed around the Bay and had lots of fun!!