Welcome Home from the Peeps!

I did come home on Thursday 5/5...  Happy Cinco de Mayo!

To my surprise, my friends decorated my front yard with the best welcome home ever.

There was a big sign that had been hand painted, "Welcome home Kait, Love all your Peeps!".  And on the lawn must have been 1000 peeps to welcome me, literally.  Thank you everyone who made this happen.  Much more creative than I could have been.

Coming Home

I should be able to go home tomorrow (after my spinal tap and a 2 hr rest period), which I am very excited.  However, my blood counts, although good, are expected to drop at about day 7-10, which means the weekend.  Lower blood counts increase my risk of infection as I have less healthly blood cells to fight off germs.

I would love to see everyone, but my parents have asked that visitiors be kept to a few at a time.  Please call or text before stopping by and please, please, please if you have any signs of being sick or getting sick or have been around someone sick, do not come by.

In addition, some have asked about meals.  Our family friend, Kim Carolo, has set up a meal calendar using the  Meal Train website.

Thank you all for everything you do for me and my family. xoxo Kaitlin

Day 5 - Coco before Chanel

My mom tells me when you're pregnant, your time turns into weeks.  Well, with cancer your time turns into days.  The chemo protocol that I am on is specific by day in 6 day increments.  Today is day 5 of this second round.  It was pretty uneventful except for the nurse coming in at 4am to change all my IV lines for the last 3 days.  She removed about 20 and replaced them with 3.  My "friend" (IV pole) is now much lighter.  Neither me nor my mom went back to sleep so instead we watched the movie, Coco before Chanel in French with English subtitles, which we both liked and the 4 years of French are paying off as I could understand most of the movie.  I did get a 3 hour nap in this afternoon.

I feel really good and my blood counts continue to be high.  Food is still tasty and I have minimal side effects from the chemo. Tomorrow will be my 3rd spinal tap of this round and then a break for a week (except for some steroid and antibiotic pills).

fyi - The spinal taps put chemo into my spine so that the cancer does not go to my brain and it also removes spinal fluid to be tested.  Never knew spinal fluid was clear like water.  This sounds much worse that it is as long as they get the numbing cream in the right spot, which is now sharpied on my back.

An updated look...

Sparkly Whites -
With all the testing, treatments, etc nothing was worse than having my braces removed.  The dr. wanted them removed to minimize the chances of infection, given that they are more difficult to brush and floss.  Before they began the first "mini" round, 2 dentists from the dental school came to remove them.  Of course there is no dental equipment here, nor did they bring any except for the dental "pliers" and picks.  Needless to say, it hurt a lot, but was only about 15-20 mins.  Of course with no equipment, there is still a little cement on my teeth that will need to be removed once I go home.

New Do -
My great hairdresser, Lisa, was gracious enough to come see me and bring her scissors.  She cut my hair into the cutest little A-line style, which I had been talking about doing anyway, this just made the decision much easier.  We were also able to save my ponytail, whick I will be donating to Locks of Love .

Kaitlin's new "Do" with her friend Mackenzie

Living in Luxury

As bad as "being in the hospital fighting cancer" may sound, I am actually enjoying my stay.  After 3 room moves, I was given the suite.  It is a nice big room that looks more like a hotel room than a hospital room.  The wood floors, nice cabinets, and wall murals of the beach make it very comforting.  In addition, the many posters, cards, gifts add to the decor and bring home here.  The only big no-no is flowers and plants because of the bacteria or fungus they may have.  Each room has a WII and DVD player.  There is a dvd library here that I can call up and have movies delivered as desired.  I am not on any food restrictions and in fact need to eat as much as I can.  Therefore, I have had the opportunity to order great pizza from a local restaurant, Pasquale's, and chinese food that was delivered to my room.  Also, love to have my Jamba Juice's (Strawberries Wild), which is across the street.  I do order the hospital food and really like it.  Best thing is I can order it whenever I like.  Bad thing is it takes 30-40 mins to arrive.

The docs, nurses, and other staff are all awesome.  Being a "teaching" hospital, I feel like a patient on Grey's Anatomy.  The drs do their rounds in the morning and about 5 of them come into my room and stand around my bed discussing how it's going and next steps.  I am being treated by Dr. Katherine Matthay, the chief child oncologist (cancer dr) at UCSF.  I then have a couple of attendies, 3 residences, and some interns.  I have had one of the residences come watch some movies with me as do the nurses many evenings.  I am allowed to leave my room for a walk and can go down a floor to an outdoor garden.

My closest circle of friends and my family visit regularily and are the best medicine I could be receiving.  Some are even learning the BART/MUNI route, which I personally don't like, but am glad they have courage to do it for me.

Round 1 "Induction" phase has begun

On Thursday 4/29, my more intense round of chemo began.  It is still considered round 1, as the "first" round was only a "mini" round to ensure my body could tolerate the meds.  Not only did I tolerate them, but my cancer decreased 20%-30% and I had minimal side effects.

As of last Friday, my primary Dr. believes that the lump in my throat is almost all gone.  Lots of learning thru this process.  The expectation is that most of my cancer will be gone after the first couple rounds of chemo.  The rest of the months is for maitenance and to ensure it is really all gone.  The back pain I had been experiencing was also gone after a couple days of chemo.  Truly amazing!!

So this too is a 6 day round of chemo, with various types of meds.  Some are by pill, some by IV, and the last 3 by a spinal tap (which sounds worse that it really is).  Believe it or not, the pills are getting to be the hardest as there are 5 little ones that are not coated and end up melting somewhat in my mouth and taste awful.

One of the meds was liquid, but after almost gagging last night, they are switching it to a pill today. YEAH!

Why "Lucky Mia"?

When I was first diagnosed with Leukemia and my dad told my brother Timmy (9) and my sister Maddie (14), he came up with the term "Lucky Mia" so that Timmy could more easily remember the diagnosis.  It also was a much more positive term that leukemia was.  Since that day it has stuck within our family.  Mia can also be translated to "my" in Italian.  Given the prognosis and the great doctors, I am fortunate to be able to fight this, making me Lucky.