My First Ambulance Ride...

My 10 day stay at home was cut short by a fever on Wednesday.  That afternoon, my temp reached 101 for 2 readings.  Once it is at 101, there is no waiting.  I must be taken to Valley Care Emergency where my UCSF dr. is contacted and gives VC instructions on which antibiotic to get me started on.  This too took 3 nurses to get an IV going after the port attempts failed.  More later on this...
USCF then arranges for an ambulance to transport me to SF... first ride ever in an ambulance. 

My stay at UCSF has been uneventful except for the "port" issues.  My fever went down almost immediately, probably with a little help from the antibiotics I am getting.  My blood counts are really low and need to come back up before I will be allowed to go home.  Waiting on blood results as I write....  but otherwise am feeling good and continue to have an appetite.  Swallowing has been a little difficult as my throat has sores (due to the low blood counts).  But I can feel them too getting a little better, which is a sign that my blood counts are improving.

As for my port (underskin IV), it is not working like it is supposed to.  During my last visit, the nurses were eventually able to get both sides working after some drug help which may have dissolved any little clots.  This time, only one side has worked and that too required extra drug help.  The other side is not working at all.
Later today, I will be having a dye xray test to see if it highlights any issues.  The xray techs will put dye into the port and then take xrays.  This should help see if the line is bent, not long enough, etc.  Or it may not show anything.  Either way, I may need to have it replaced next week.  In the meantime, it just means I need to have an IV in my arm, which I do not like getting as my veins are difficult to access.

Maddy goes to Senior Ball and Happy 16th Claire!

So on Saturday, I did get to go home mid afternoon.  I missed seeing Madelynn off to Senior Ball with her beautiful white gown, but did get to go to Claire's 16th Birthday party.  Had a great time and loved seeing all my friends.



Beautiful Madelynn!



Happy 16th Birthday Claire!!



Claire, Jenna, & Alexis



Me with Kyle & Jarrod

A spoon full of Pudding makes the medicine go down...

I have never had an issue taking pills, but when they start giving you 10-15 per day and some are not coated and taste awful, it quickly becomes an issue.  After gagging several times and trying new "tricks", I now take may pills with nothing else, but Chocolate Pudding.  It's a 2 step process.  First the pills are stuck into the pudding and then carefully they are fully covered one at a time... and with one big swallow 3-4 disappear without any bitter taste left in my mouth.
 

Round #3 Update

Well, today is day 6 of this round of treatment.  I am feeling good, just a little tired.  I am due for one more spinal tap tomorrow (#9 so far) then I will be going home for another 10 days.

This round was exactly the same as round #2.  It has agreed with me, no vomitting or allergic reactions.  As last time, my blood counts will drop around day 10-12 (Tuesday-Thursday), so the number of visitors will be limited by my parents :)

Thanks to the Lubow Family, there are now Red and Green Flags on my porch. 
Green, good to go and would love to see you, come on in. 
Red, am resting or my blood counts are too low, come back soon.

Thanks for all the prayers, visits, cards, etc...  I love you all.  Kaitlin

Allie's Friends

Today was Stuffed Animal Day at the hospital  Allie's Friends Foundation sponsored a stuffed animal event where the children could pick out a stuff animal and help them get a check-up.  For those of us that didn't attend, the volunteer staff came around to our rooms and we got to select our own friend.  Below is a picture of mine.  Help me pick out a name...

Leukemia treatment may be cure for AIDS

This week it was announced that there may be a cure for AIDS (HIV positive).

A Belgian who had been living with AIDs was diagnosed with Leukemia.  In 2007, doctors treated the leaukemia with a bone marrow transplant.  The bone marrow came from a donor that immune to AIDs (only about 1% of the population is immune).  The transplant cured both his Leukemia and his AIDs.

He is currently being monitored at SF General Hospital and UCSF.

Doctors examine AIDS 'cure' case

Truly amazing what modern medicine can do and how much is still not known.

Bald, not so bad...

Let me explain...  going bald is not a bad thing when it comes to cancer

Part of the chemo treatment is to kill all fast growing cells, good (hair) or bad (cancer).  So the fact that the hair is falling out, means the medicine is killing cells.  My back pain is gone as is the lump in my throat so we know the medicine is killing the bad cancer cells as well.

My uncle Bobby, gave me my buzz cut on Saturday before I came in.  I think he, Cody and my cousins had a little too much fun with it (pix me in a mohawk).  It is amazing how much hair one head can have.  When it was falling out, it was everywhere.  Almost like dog hair, but mulitplied by 10. Much easier not having to deal with that.  Have a few new beanies, pictures to come..

I didn't have a choice to be bald, but my doctor did and chose to be a hero... 

Dr. Kate Matthay has chosen to have her head completely shaven as a fundraiser for childhood cancer research.  She is working with the St. Baldrick's Foundation for the big event on June 8th.  If you are looking for a good cause to donate to, this might be it (just click the link above). If I am home and feeling ok, I will be attending this event and cheering her on. If anyone would like to join me, let me know.  It will be held at The Kezar Pub near the hospital in SF.

 The St. Baldrick's Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives.  They have generously supported clinical and laboratory research at UCSF and many other children’s cancer centers around the country. In 2010 alone, they gave over $14 million in grants for childhood cancer research.  And all because people chose to be bald!

Is there a real St. Baldrick?

To our knowledge, there's no real St. Baldrick. The name "St. Baldrick's" is a combination of the words "bald" and "St. Patrick's," since the first event was held in 2000 on March 17, which is St. Patrick's Day.

All in the name of medicine

Being at UCSF has been great... The doctors and nurses are awesome and I really enjoy being part of this learning facility.  Part of experience of being here is having doctors and nurses, that are in different stages of training out of school, "practice" on me.

One of the newer nurses, Matt, has not been so successful with me.  He continues to be one of my favorites and I actually feel bad for him.  He has had to witness my more emotional moments.  When I was first in, he tried to draw blood and it would not work.  He was then successful in getting an IV in :).  However, when it came time to do more blood work, my mom had forgotten the IV part and "fired" him. After being reminded of the success, he was able to draw blood.  This week when I came in, I need to have my ports (an IV under my skin) accessed so that fluids could begin.  This is usually a very easy procedure done in 5min.  Of course, not mine.  Matt tried, no success, 1 1/2 hours later and 3 add'l nurses, tears, pain and "being done" they had accessed only 1 of the 2 ports. 

Today I was due for a spinal tap, so the thought was I would be heavily sedated (not completely under) and they could then do my spinal tap, which has always gone well the other 6 times, and access my 2nd port.  Spinal tap - Success!! Port access - not so much!!  aaaarrrrggg!!  The spinal tap was done by a newer doctor obviously learning.  Not to worry, there were 3 other doctors there, one of which was the "teacher".  It went very well and I didn't feel it at all.  As for the port, the staff now thinks it may be clogged, even though it worked perfectly less than 2 weeks ago.  Next steps, they will put dye into it and do some xrays to find out whats going on.

Update on the port - after some medicine/fluid to "dissolve" any tiny clots, they got my port to work earlier this afternoon.  YEAH!!  no dye test tomorrow.

Jewelry, Church, and the Sports Park what a combination!

The last 3 days have been eventful.  Besides all the great visits with family and friends, I was able to do more than I have done in a while

• I now am on a homework plan to help me complete my sophmore year.
• On Thursday, Claire host a Twisted Silver jewelry party as a benefit in my honor... Many thanks to you Claire, your parents and to Debbie, the owner of Twisted Silver, for making this happen.
• On Friday, I had my blood tested and the counts came back very good.  Amazing how our bodies can recover from all the drugs that intentionally kill both the bad and good cells.
• Friday evening, I was able to attend Confirmation, a rite of initition for Catholics, which I have worked towards for 2 years.  Many of my friends were being confirmed so I was thrilled that it worked out to where I could also be there.

• Saturday morning I went to my team's softball game, which they won...  GO SAVAGE!!  It was "Kaitlin Gallagher Day" at the snack bar.  My team volunteered their time so that the worker pay can be donated to me.  THANK YOU ALL who volunteered.  "Lucky Mia" bracelets were also available.  Thanks Trevor!!
• Then it was off to Timmy's baseball game.  It was freezing at the Sport's Park but the fresh air felt good.  My avo then drove my mom and I back to the hospital for the next round. More to come...

Rockin' Jump Benefit

Hi Everyone - Alexis Faria & Christine Hoopes, along with others who are helping, have been busy organizing a benefit for me.  It wll be held on Memorial Day, May 30th at the brand new Rockin Jump (think Sky High).  There are tickets being sold, for $12, for 1 hour slots throughout the day.  Some time slots are reserved for the littlier ones. 

If you would like to come join us,

click on the link above to purchase tickets.

Many thanks!!  Kaitlin

Two words: Madelynn Fiercechild

First of all, my auntie Jojo is home from a 9 day trip to Europe.  While traveling through Prague and Vienna she lit candels in my honor through the many churches she visited, and St. Stevens in Vienna will remember me in their Prayers of the Faithful this weekend.

Today my energy continues to increase and build immunity allowing me to spend the rest of the night with someone people call a friend but I call a best friend, Madelynn Fairchild, and we're prepared for a night of lounging, her homework, and a chick flick.

Love all my friends, it keeps me so much stronger <333

Also, we figured out that if you clench your left fist you can stick your right pointer finger down your throat without gagging.

Day of the Blanket

Alexis, Jamie, & Madelynn came to visit and make a cozy blanket

Word of the Day - Neutropenic

Being Neutropenic is when White Blood Cell counts are very low.  Normal range is 1800-8000.  You  become Neutropenic when the count goes below 1000 and have no immunity when the count is below 500.  On Monday, my bloodwork returned an Absolute Nuetrophil Count (ANC) of 16.  Yes, my immune system was shot...

It was a day of lots of sleep, followed by a night of taking my temperture and making regular calls to UCSF.  Dr. Dias, who was on call that night, also did not get much sleep and even called our house once to check in because we hadn't called him.  The tolerance for having a temperature is very low.  If I have a temp >101F or sustain a temp between 100F and 101F for an hour, then I must go to the nearest emergency room where I am immediately put on antibiotics and then transported to UCSF by ambulance.  Kinda of scary, but only temporary until my counts go back up.

Luckily, my temp was not stastained >100 continuously for an hour.  It would teeter above 100F and then drop back in the 99F range.

Today it has stayed below the 99F mark... Great day and I can feel my energy coming back.

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.