Gearing up.

Sunday is the day.  The first annual "Team G Obstacle Course" and Blood Drive extravaganza will be taking place at Crossfit West Santa Cruz.  We are realizing that this is really getting bigger than we could have hoped and we are excited!  New wristbands have been ordered, T-shirts are being printed, high school football players will be building obstacles and the Stanford Blood bank is using our blog on their web page.

SOME OF THE CONTRIBUTORS FOR THE RAFFLE AND OBSTACLE COURSE PRIZES:
REEBOK
STUDIO 831, SC
FITAID
TIGER MARTIAL ARTS, SV
THE FISH LADY, SOQUEL
DAVE'S ALBACORE, SC
GIFT CERTIFICATES FOR:
KIANTI'S
OLITAS
CLOUDS
LOS GATOS BREWING COMPANY
WINE TOUR FOR 6
FACIALS
MASSAGES

The article Kimberly wrote not only made the front page of the Sentinel but was run on Monday in the San Jose Mercury news.  Pretty darn exciting.  We were so impressed with the article and the person who wrote it.  She came to the house and was patient, kind and respectful.  We could not have asked for anything more.

Kris, G and I spent Wednesday at LPCH.  We started with a chemotherapy and then ran across the street to meet with the surgeon who will be in charge of moving G's ovaries out of the radiation field on July 13th.  He outlined how the surgery will go and who will be there.  It sounds like there will be a full house of doctors who will be working on her but he will be in charge of most of it.  The radiation oncologist will be there to direct him where to put the markers that they will use to line up the radiation treatment stuff.  The pediatric gynecologist will be there to do an exam of the area where the tumor is/was.  Once again sitting in the little consult room with Gabriella I began to feel overwhelmed.  Damn I'm getting tired of watching her go through this.  I just kept thinking how much I want it to stop.  I asked the surgeon to take good care of her and we both were struck by the emotion.  He mentioned a few times how he would take care of her like his own.  I truly believe him and know these people work here because they are very, very good at what they do and they care so much for the children they are treating.

On that note we met with Dr. Cohen, a senior Oncologist from Packard, while she was having her chemo done.  He was so patient and informative.  He came by her hospital room back in May while she was staying there with a fever.  This doctor is a professor and a physician.  Probably one of the busiest people we know yet he took the time to sit down and have a tea party with Gabriella and yesterday stood and answered our questions until we were done asking.  It's a lesson that I will take forward in my life, take the time for people.  We get so busy and sidetracked with cursory distractions that it is easy to forget what matters.  If you come to the benefit on Sunday and I don't know you or we have not met, please say hi.  I want to know and show my appreciation to all of those who are supporting us in anonymity.

Team G

Adam

Overwhelming Goodness

I am overwhelmed this week.  There's so much going on and I'm trying to stay on top of it all, of course.
A wonderful husband and wife volunteer team from Make a Wish came out on Tuesday to talk with Gabriella about her "wish".  What an amazing foundation they have put together.  She was so very excited as she was greeted with a princess balloon and a bag of goodies.  She was asked about her wish...to go to Disney World or a Disney Cruise.  (Yes, I did coach her and give her fun "ideas" on places to go.)  Adam and I want to her to be able to enjoy the wish so we were debating when would be the best time to go.  However it works out, its going to be amazing and she deserves every little bit of it!

Later on in the evening, Adam's parents greeted us with our new (used) RV!!!  Back in December, we rented a motor home and drove to Death Valley, through the Mojave Desert, down to Grandma and Grandpa's house and back up the coast.  We all loved the trip and the girls especially loved being in the motor home.  So Adam and I decided that an RV would fit many needs for us at this time.  It would give Grandma and Grandpa as well as Nana and Papa a place to stay when they came to help out and it would serve as our living headquarters Monday thru Friday during radiation.  Since we can't go very far these days, we can also take the RV out for a "mini" vacation overnighter here and there.  Adam has spent countless hours on the computer researching RV's and many hours in the car driving around to look at them.  (Most were in Sac).  His parents took on the duty down south and we finally found something nice!  With a little cosmetic work and some repairs, its going to be great and boy are we relieved about not having to drive up to Stanford every day.

This last week has also been the excitement of Gabriella's picture on the front page of the Santa Cruz Sentinel with the same article being published in the San Jose Mercury News.  We have gotten a huge response from friends and individuals who were inspired by our story.

Maybe its the staggering lack of funds for pediatric cancer that has really overwhelmed me.   In the very beginning of our journey (only 3 months ago), I was asked to be a part of the video for the 2nd Annual "Mama's Night Out" to benefit Cookies for Kids Cancer.  I was not totally ready to go online and research this cancer that was invading my little girl's body but wanted to find out more about Liam, son of Gretchen Witt who founded CKC.  The last entry I read in the blog Gretchen and Liam wrote was a letter to Liam.  He and his parents fought a neuroblastoma for 4 1/2 years and last May, he passed away 1 1/2 years ago at only 6 years old.  I cried my eyes out that night, for a little boy and his family I had never met.  Reading Gretchen's blog and fighting cancer ourselves has completely changed me in ways I can't begin to describe.  CKC was started because of the significant lack of funds allocated toward childhood cancer research.  Now, I'm finding out the motivation for starting foundations such as this.  I was shocked to hear that only 3% of total cancer research funding is designated to childhood cancers.  Only 3%.  Maybe its time to start making changes.

Some research I recently found:

Today as we visited the hospital for our weekly vincristine.  After seeing the facts for myself, I have this nagging question as to why so little is spent on childhood cancer research.  We were able to talk with Dr. Cohen, a wonderful oncologist who has been at LPCH for many years, and ask why so little was spent on research for childhood cancer.  What we talked about was the rarity of cancer in children.  In about 3,000 cases they see of childhood cancer, there will be about 300,000 cases of adult cancer.  Even though it happens and we hear about it all the time, obviously it happens much more in adults.  We also talked about the possible years of life you give when you cure childhood cancer...probably about 60 to 70.  By all means, cancer in adults is very important to study and research.  But, why so little to these innocent little beings...our future.  Why aren't we investing more into finding a cure for our future?  I just don't understand.

As I think about all the time and energy our friends, our community and our family are putting into helping us, I am overwhelmed with emotion.   I don't know what I ever did to deserve such goodness.  The countless hours our CrossFit family has spent on this upcoming fundraiser, the days our parents and families have spent driving back and forth to the hospital, individuals in our community who have reached out to support us, the newspapers, my friends who have put their families and jobs on hold for hours at a time all to help us...us.  How? Why us?  I just don't know how to say thank you enough.  I never knew the universe could be so giving.  I have a whole new appreciation for the goodness in people.

SOME OF THE CONTRIBUTORS FOR THE RAFFLE AND OBSTACLE COURSE PRIZES:

REEBOK

STUDIO 831, SC

FITAID

TIGER MARTIAL ARTS, SV

THE FISH LADY, SOQUEL

DAVE'S ALBACORE, SC

GIFT CERTIFICATES FOR:

KIANTI'S

OLITAS

CLOUDS

LOS GATOS BREWING COMPANY

WINE TOUR FOR 6

FACIALS

MASSAGES

As the battle wagers on, I have to remind myself to stay strong.  I often think about the phrase hanging in the bathroom at our gym (one that I first looked at when this all began) that says "Wake up each day believing in your dreams..for you are made for amazing things".  Is it sayings like these that strike us at certain moments when we are most vulnerable, to help us believe that it's true?  Or do we constantly remind ourselves that this IS what was meant for me; this is my opportunity and I will see it through.

Motivation....and Recovering from Chemo #4

I was putting G's sharps container away this morning after her bi-weekly blood draw and was staggered by how full it was.  In fourteen weeks she has been poked and prodded, drawn from and injected into more than most adults have been in their lives.
As many of you know, we will be holding a benefit and blood drive July 1st.  In case any of us out there (me included) are a bit apprehensive about the needle stick involved in giving blood, let's think about the cancer kids who go through this every day.  So please, if possible, show up and give some blood.  I know there are plenty of people out there that need it.

Team G


Adam

June 13th Gabriella had her 4th "Overnight Chemo" as planned; the Vincristine, Dactinomycin and Cyclophosphamide. Grandma and Grandpa came up to stay with Bridget and Adam went to work.  He was very apprehensive about being at work while G was getting her chemo but I assured him we had it covered.  G did amazingly well and we had a great time at the hospital playing games, watching the piano in the lobby play itself, painting in the art room and watching Yogi Bear (for the 10th time).  The hospital has a pet therapy program where they bring in about 6 dogs to visit with the patients.  G fell in love with the little white dog that looked like a cotton ball and we got some great mom/daughter bonding time. 

With the overnight chemo comes the daily shots for about 12 days after until her counts (ANC) recover.  Adam worked hard on changing the concentration of the Neupogen so it would be a much smaller dose.  The shot still created so much anxiety for her during the day that we just decided we were going back to the night routine.  Without lidocaine (it's pointless for the shot anyhow) and within the first hour after she falls asleep, we just go in and get it done.  She doesn't remember it the next day so it seems to work for now.  

June 20th, this past Wednesday, was another visit for Vincristine.   We also got some further news from the doctor about Gabriella's upcoming events.  The surgery that was going to happen the last week of June is now scheduled for the 13th of July.  Not as timely has we had hoped but they wanted to make sure G's counts recovered and that she had no unexpected fevers.  They also needed to coordinate all three surgeons and anesthesia to be available on the same day.  I guess that's an act of god.  

There's so much coordination and so much information to gather that it can get very overwhelming and frustrating.  That's pretty much how I felt knowing that radiation was again, going to be delayed.  The doctors assured me that this wasn't going to affect the outcomes in the long run.  It's all part of the protocol apparently and "no cancer patient get's 100% of their treatments on time" is what I keep hearing.  So, the first week of July we get a "break".  I didn't really want a break.  I just want to get this done.  It's kind of like being in class where the teacher asks if we want a short break and get out of class earlier or if we want a longer break now.  I never raised my hand asking for a longer break.  I'd just rather get out of class early.  

On a positive note, Make a Wish is coming to grant Gabriella her wish!!!  I am so excited about getting to take her on a wonderful trip!  What an amazing foundation to grant "wishes" to children with life threatening illnesses!  It's a little bittersweet because you get this amazing wish but the reason they grant it is because your child is very sick.  Adam and I have talked about when to plan this trip...if its better to save it as a reward in the end or to do it in a few months.  Quite possibly it will wear her out and she might end up sick which would further delay treatment.  They are all big decisions but we will definitely go sometime after radiation.

As you all might know, a wonderful lady (Kimberly) from the Santa Cruz Sentinel came over on Tuesday.  She was great to talk with and so respectful of Gabriella, making sure she would be ok to look back on this article when she was older and be proud of her story.  We talked a lot about our journey till this point and how devastating it felt in the beginning.   We tried to focus on the message that we wanted to send out.  There are still so many things I want to say but mostly its about trusting your instincts as a parent, living in the moment, prioritizing things in life and finding the positives in the worst situations.  I would have never chosen for my child to have cancer but I see how good things can come out of bad situations.   As a friend told me, you will know a sweetness in life that you would have never known before. 

The story was published on line later that day and came out in the paper the next morning.  It turned out to be a really great article.

Here's the LINK to the article. 

Don't forget:

LET'S HELP SAVE A LIFE!!  DONATE BLOOD!!

TEAM G FUNDRAISER AND BLOOD DRIVE 

JULY 1st!!!!!!!

Enjoying Baskin Robbins ice cream.

A beautiful quilt from Susan...Thank you!

Visiting with Kelly.
We've had some really nice visits with friends over the past week. 

Daddy and his girls on Father's Day.

I think this will go down as one of my favorite pictures.
As we were driving to the hospital, we noticed the girls holding hands.
One of the sweetest moments of my life.
(So glad to have an iPhone!) 

Dear Adam

When we got married, you vowed to show me a life "full of adventure"!  Boy, you weren't kidding!  In the last 10+ years, I've never experienced so much.  You've taught me how to love life and how to live it.

I remember so well the first time we met.  It was in room 4 at Alta Bates Emergency Dept, the OB room...maybe that was a sign ;-).  You reached out your hand to me and said, ''Hi, I'm Adam".  You were the strapping young fireman and I was the single young nurse...pretty much the only young nurse in the dept.  I loved watching you walk around the department in your turnout pants with your suspenders hanging down, "Berkeley Fire Department" navy blue t-shirt and your boots. I loved having you bring me patients and couldn't wait till we got the next ringdown on the radio telling us "2295" was bringing someone in.  Our first "bonding" experience was with the crazy guy who started having a grand mal seizure and we were the only two in the room.  Being the confident medic that you were, you calmly reached for the oxygen and I ran frantically for the Ativan.  I'm glad I didn't poke you with that needle!  

When we started to get to know each other, I would sit in awe as I listened to your life experiences and wished I could have experienced these things with you.  I loved hearing your stories then as much as I love to hear them now.  You could tell me the same story 50 times and I still hang on every word.   I was impressed by how many amazing experiences you already had.   

Our first trip together was our climbing trip to Lover's Leap.  I've never put so much trust in one person hanging on to me with a 100m rope and I've never had such confidence while doing it.  Even getting stuck and not being able to hear you, I knew you were there and I knew you would get me through it.  There was just something special about you.  Our second trip, we boarded Brad and Mary Jo's little 4 person plane and Brad flew us down to Mexico.  Drinking shots of tequila, wandering in the desert with who again?(...a tour guide?), jumping into black crevasses, dirt runways, etc.  We got into some sticky situations...lol!  But I knew I was safe because I had you.   This was the trip when I new I had fallen head over heals for you and wanted to spend the rest of my life with you.  Thanks Brad and MJ!

Even though Gabriella has cancer and we are living in a world of craziness right now, fighting with everything we have, I know in my heart that we will be ok.  I'll be ok because I have you and our girls are going to be incredible people because of you.  I have been blessed with everything I have, especially with you. 

Adam, you are an amazing person, an incredible husband and friend, an outstanding father....I could go on and on!  We've been to some amazing places and have experienced some amazing things together and I'm so proud to have shared the last 10 years with you.  

I love you more than anything!!!

HAPPY FATHER'S DAY

Kris

Big Kahuna Triathalon

Honeymoon in Aruba

Climbing Half Dome, 4 mo pregnant with Gabriella

Scuba diving in Belize

San Francisco

Dirt biking in Hollister

Zip line in Guatemala

Ski Patrol at Boreal

Adam and Tad racing at Infineon Raceway

Adam with Gabriella at one day old

Our road trip to Colorado

DADD...Dads Against Daughter's Dating

G and Daddy at John and Una's pool

Daddy with Bridget one day old

Adam and Bridget

Taking G skiing

Daddy and our G girl

Team G FUNdraiser and BLOOD DRIVE

Hello fellow Team G'ers. Aren't uneventful weeks nice?  Well this time we are posting about an awesome Team G event.  On July 1st from 11am until 3pm at CrossFit West there will be a Team G FUNdraiser for Gabriella and blood drive to benefit Stanford Hospital.  CrossFitWest is setting up an awesome obstacle course for people of all ages and abilities to run through. There will be prizes for the top men's and women's times, raffles, food and plenty of other fun activities.  All proceeds will go directly to the Team G fund.  Something that has been a big part of this journey for Team G is realizing that this fight is not unique to Team G.  Walking through the halls of LCPH there are hundreds of families going through similar battles, something that has been talked about from the beginning of this is how can Team G help in some way.  We have been very fortunate to have teamed up with the Stanford Blood Center to coordinate a blood drive to benefit the Stanford University School of Medicine.  The blood drive will run the entire event and it's recommended that you make an appointment to donate.  There are a limited number of appointments, so let's see how fast we can fill the slots.  To donate blood you must be at least 17 years of age or 16 with parental consent.  Use the link below to schedule your donation.  Let's do this Team G.

Blood Drive Appointments.

SOME OF THE CONTRIBUTORS FOR 

THE RAFFLE AND OBSTACLE COURSE PRIZES:

REEBOK

STUDIO 831, SC

FITAID

TIGER MARTIAL ARTS, SV

THE FISH LADY, SOQUEL

DAVE'S ALBACORE, SC

MASSAGE BY SARA BOSINGER

WINE TOUR FOR 6 (NAPA) 

FACIAL MASSAGES

GIFT CERTIFICATES FOR:

KIANTI'S

OLITAS

CLOUDS

LOS GATOS BREWING COMPANY

An Uneventful Week....YAY!

Getting into the christmas arts box!  

Love the dress from Arin!  She loves it!!

A little play time at the part with Bridget.

G and Bridget had so much fun the short time we were at the park.  

They were loving being together and just playing. 

An art project in the kitchen....finger painting!  Thank you Victoria!

G is doing fantastic! We've been keeping things pretty mellow and she is doing well.  We've gotten out a little here and there to visit friends and actually ventured to Costco and the park.  Short but sweet!  She had her weekly chemo on Thursday and her counts are doing well.  We're ready for our overnight chemo on Wednesday.  Then on to the big events the following weeks.

More updates....And an update for Monday

Friday we had chemo.  Just the single med push.  Kris stayed home with Bridget and G and I took the trip to LPCH.  I forgot to preload her with Zofran so she got pretty nauseated on the trip.  The nurse practitioner had her blood drawn prior to the chemo.  It was a pretty easy appointment and we were home quickly.  When I got home Kris was just getting off the phone with the RN-P who said that G's hematocrit or hemoglobin, I can't remember which, was low and she should come in for a blood transfusion.  I had to get back to work Saturday but Kris was able to take her and Uncle Ronnie and Auntie Mel were stayed with Bridget.  Per Kris, the transfusion went pretty well and G was feeling good.  After they left LPCH, G had a pee that pretty obviously had blood in it.  Kris took her back in to LPCH.  They have since then sent her to the Stanford ER where they are now. They are going to re-access her port to get blood and test her urine to figure out what is going on.  From what I have seen on the internet, it could be nothing or it could be bad.  I am just waiting to find out from Kris.  She says that Gabriella is in good spirits and feeling well.  She is getting so used to being in the hospital that she does not complain at all.  I have a suspicion that she does not really like it though because we told her that in order to stay out she is going to have to eat, drink and wash her hands and she is really working hard to do all three.
This roller coaster ride is just ridiculous right now.  It's unbelievable how much stress is involved in being a family fighting cancer.  I had no idea.  I know we will make it through and will be so much stronger when it's over.  Man I hope it gets over soon.

Team G


Adam

MONDAY
Sorry to leave you all in suspense.  It's Monday evening.  I am worked to the core but saved a little energy to write this tonight.  Saturday ended up being a minor reaction to the blood transfusion.  As Adam noted in the earlier update, after the transfusion on Saturday, G and I were on our way to McDonald's at Stanford Shopping Center for some chicken nuggets.  It seems to be her go to food these days.  Perfect...protein.  I'll take it.  Anyhow, she had to go to the bathroom and knowing we wouldn't be able to make it to the restaurant on time, she just squatted in the parking lot.  I noticed a reddish brown tinge that I hadn't seen before in her urine.  It was on grey asphalt so it was a little hard to see but it was definitely dark and not normal.  Immediately post blood transfusion, my suspicion was high that it had something to do with the blood.  I debated for a second and thought, using my nursing mind, she seems great, has energy, no complaints of painful urination or anything else.  Maybe I could just wait for the next pee and see what happens.  I just want to take her home because we all needed a break from the hospital and I knew it wouldn't be something quick.  But I realized this could be something more and we might just end up back in the hospital again later that night.   Since we were not even a 1/2 mile away, I just took her back to the short stay unit at LPCH (where she had received the blood) and see if they could check her.  No doctors were there and they told me to call the on-call oncologist/fellow.  I sat on the floor in the lobby holding G and waiting on the phone for the operator to find the doctor on call.  Of course, they told me to go to the ED at Stanford for a urine test and blood work, meaning they were going to access her again.  Damn it.  They just de-accessed her and I didn't have any lidocaine cream to put on her.  I went over to 1 North (god bless those nurses) and they got us some lidocaine. 
It was standard procedure in the ED with urine and blood work.  They got us to a room right away, which I didn't have to throw a fit about.  G did great and the access went well.  We watched movies (thankfully they had a TV in the room).  Finally after about 4.5 hours and no food arriving (which we had ordered about 1.5 hours previously), I was getting pissed.  I kept asking as politely as I could if we could go home.  After the results from the urine and blood came back, it was time for us to go.  From a clinical stand point, Gabriella looked great.  She was in great spirits, her urine was finally clear after another dark amber episode, the blood work was as expected and the results showed that she had a minor reaction to one of the antibodies (maybe antigen?) in that particular unit of blood.   Her body was trying to fight off whatever was in the blood and it created "hemolysis", a breakdown of red blood cells.   The red blood cell parts were secreted in her urine.  The doctors kept adding all these "tests" and told me they wanted to do a "kidney function test".  Really?  I knew that was pretty much a standard blood test on a chemistry panel that most, if not ALL ER's draw as standard practice as soon as a patient arrives.  Now, I was more pissed.  The nurse got the on-call doctor on the phone and I told him I was about to de-access her port myself and take her home.  They had told us about 2 hours prior that we probably wouldn't stay and from the looks of G, that we wouldn't need to.  Well, needless to say, they got on the ball and discharged us.  Thank god I'm a nurse.
Off to McDonald's again, where we were 5.5 hours ago.  This time, they were closed.  Battery barely at 8%, no charger, exhausted and trying to find the nearest McDonald's on my phone; I was going to get my girl chicken nuggets.  We finally saw the golden arches ahead.  It was 9pm.  I was watching G carefully dip her nugget into her ketchup, daintily eating each piece, wiping ketchup off my pants, cleaning up the water she spilt, holding my breath each time she was finished chewing, hoping she would take another bite and carefully assessing the "questionable folks" that walked into McDonald's late in the evening.  I was ready to grab her and my bag at a moments notice just in case someone mouthed off a little too loudly.  It wasn't that bad.  Maybe I'm just paranoid.  
The trip to the hospital was a little adventurous as well but a little less coming back 12 hours later.  On the way up and after dropping Bridgy off with Ronnie and Mel, we stopped to go potty.  We stopped after 17 because G was nauseated and I needed to coerce her to take a Zofran (for nausea).  Maybe my coercing her to take her two awfully tasting antibiotics while driving made me swerve a little too much.  We were almost to the hospital, on another slightly windy road, and she asked me to pull over.  With an anxious look on her face and her hand over her mouth, I knew it was urgent.  She didn't have much to eat that morning so she didn't throw up too much.  Another angel pulled over to help us.  Gave me some barf bags to stash in my car.  Said she was a nurse and had gone through it as well.  Thank you angel.  
On the ride home, it was another stop to pee and another to change into her pajamas.  Nana and Papa ended up taking Bridget and she was asleep way before we got home.  G fell asleep in the car.  
Home finally.  My haven.  


G is doing fantastic today and was having fun playing all day with Bridget.  We baked a little in the easy bake and they loved it.  Thursday is another short chemo day and next week will be the overnight chemo, #4.  Do I dare say we are back on track?