Off the Ledge

I feel like I've been talking myself off the ledge all day.  Not because I want to jump but because this crazy force is trying to push me off.  I felt a little like a crazy person today.  Talking to myself and doing a lot of reassuring that everything is going to be ok.  We've been doing everything we can to stay busy, hold our heads up high and reinforce ourselves to the fact that Gabriella is going to come out of this perfectly fine.  Today, the negative tried to take the better of me but I continued to force "those thoughts" back and push them out of my mind...."She's going to be just fine....but what if....no, no, no....she's going to be great....the cancer is dying....but......no, no, no....she has been having trouble regulating her bowels the last few days...that happened in the beginning when the tumor was so big that it started to get in the way of her regularity....what if....NO, NO, NO...THE CANCER IS GOING AWAY... I KNOW IT IS....."
Crazy talk...crazy thoughts.  I felt like a crazy person.  The thoughts...NO...the thoughts....positive....play with the girls....think....push the thoughts out of my mind.....do whatever I can to stay positive...
My mom arrived in the afternoon and I just needed an outlet.  I grabbed Ellie and went for a run...a soul soothing, anxiety releasing run.  So much stress I carry in my shoulders and it mostly went away after running.  Ahhhh...just what I needed.

G's scans are starting tomorrow and Adam and I have been pretty anxious this week.  Even Ellie our dog has felt the anxiety and stress this week.  She's pretty sensitive to our moods and in the past, has only taken off to "look for us" when I was 8 months pregnant with each of the girls.  G was feeling well enough on Thursday night to attend Disney on Ice (which Jacob's Heart was kind enough to send us tickets).  Both girls had an amazing time and Disney is truly magical.  Gabriella said her favorite part was watching Pinocchio's fairy and Bridget's favorite was Cinderella.  As we were driving home, we got a call that Ellie was found running up Highway 17.  She got so nervous about us being gone along with feeling all the stress this week that she decided to climb over our 6 foot fence, rip her dewclaw's off in the process, run through the neighborhood and make her way up the highway to find us.  Ugg.  Luckily, a young man grabbed her and brought her back safely.  Time to board up the gate a little more.

Disney on Ice!  I love this picture
especially B being so happy with her lolly pop!

G's fist art ciass

 Friday was G's first art class from our friend Rachael at Drawn2Art.  I was much more nervous about leaving her than I ever anticipated but she was so amazing and really got into her work.  Bridgy and I went to the grocery store but drove by a couple of times to see how she was doing.  Never thought I'd be that mom but here I am. 

With my mom at home watching the girls, I was able to attend some halloween festivities.  Adam has been at work for the last couple of days so my dear friends Ronnie and Mel took me.  It was great to have a chance for some fun and some normal time.  I'm lucky enough to have such positive friends as Mel, who reminded me of all the things I needed to hear.  Probably things I need to hear every day to keep my mind on track but especially right now.


We also got a chance for a halloween dress rehearsal at Cousin Caiden and Iskandria's school.  The girls were so excited about being with Iskandria and so excited about wearing their halloween outfits.  It was very endearing to see Iskandria taking such good care of her little cousins and being so proud of them that she introduced the girls to all of her friends.  G had a great time just being a little kid.  With her wig on, no one even knew she was different.  I was so worried that her wig was going to pop off and that the kids would give her a bad time but I think it would have bothered me more than it would have bothered her.  She's so resilient and know's how truly special she is.  

As we head into tomorrow (or today as I'm writing this), an array of tests will be done to make sure we are heading the right direction with her fight against cancer.  A CT will be done tomorrow and an MRI will be done on Monday to make sure there is no new tumor growth and to make sure that the primary tumor site is still shrinking.  It will also check to see how the radiation treatments effected the lymph nodes and to make sure they are stable or better yet, shrinking along with the rest of the tumor.  The following Monday will be an exam with a biopsy to see how the cells are responding.  The next few days will be telling of the positive direction that G's cancer is going away and we are positive that these next few days will be full of nothing but good news.

Moving forward.

Kristin

Follow up

I thought I should write a quick post to let you guys know how the night actually went.  I guess we finally got the cocktail right because about 9:30 G finally stopped throwing up and went to sleep.  She slept pretty well during the night except for the frequent trips to the bathroom.  I got up this morning to find her feeling pretty lousy.  She tried to do some jumping jacks while watching Mickey Mouse and it broke my heart to watch her get two or three done and collapse back on to her bed.  The doctor came in early and told us that this is how kids usually act after chemo.  The fact that in the past she has ran around the grounds of ECH after her chemo is not the norm at all.  We drove home around 11:00 and she made it all the way to the driveway before she had to vomit in the bushes.  She is resting now and getting really hungry.  Hopefully she will be able to hold down some food and get back on her feet in the next day or two.  Cancer sucks but I am so proud of my girl and her ability to stay strong and positive when she feels lousy.


Team G


Adam

Scanxiety and Chemo Round #9

Reality...

For the last couple of weeks we have been enjoying some quality family time, no chemo, no radiation, no trips for G to the hospital at all.  Today we get back into the game.  Her overnight chemo number 9 is today.  In our last meeting with the oncologists, they told us that the cumulative effect of the chemo and radiation may start to take hold.  Today started like the rest of the chemo's.  Lots of fluids to start and then the meds.  G was feeling good enough to go down to the gift shop for a stuffed animal for her and her sister.  We wandered to the cafeteria for some popcorn and orangina.  Then back to our room for the NLCS.  Then the reality of chemo and cancer came back to us.  G started throwing up.  And throwing up.  And throwing up.  We tried Ativan which seemed to work for a brief time.  She got pretty high and kept calling me boss.  "What's the plan boss?".  What 4 year old says that?  Then more throwing up.  So we tried Benedryl.  She is finally sleeping but I'm afraid that this night has just begun.  Ugh.  Wish us luck.

Team G

Adam

It's difficult to fight off the feelings of helplessness when I'm away from G and she's feeling the effects of chemo.   These past couple of weeks, Gabriella has been doing incredibly well.  Today we completed #9 (of 14) of her three drug overnight chemo, where she stays for pre and post hydration for 24 hours.  Adam and I have taken turns staying the night with her.  It's a physically difficult night for her because of the chemo, the nausea and the constant peeing every couple of hours and sometimes every hour.  I forget how emotionally difficult it is to be at home on the other side and not be able to comfort G while she's throwing up, to help her with her nausea, or to give her cuddles when she needs it.  Even seeing her little face on the phone isn't a substitute for kissing her soft little precious bald head that I just love to kiss.  It's especially soothing to brush my cheek over the little strands of peach fuzz that cover her head.  But daddy is there giving her plenty of love.  Bridget and I had a fun night having a dinner picnic on the living room floor while watching the Giants win the NLCS Championship. 

The past week has come with many emotional up and down moments for me.  Things started off last week with a visit to the ICU at Kaiser (my work) for a few hours of compliance training via computer.  Seeing some of my favorite co-workers of nurses and doctors was encouraging.  It was great to feel a stronger sense of normal just being at work for a few hours.  Just realizing how many of my co-workers have been following our story and cheering us on was inspiring.  I'm always a little surprised when people are happy to see me back.  Since I work so little, I didn't think I was missed that much.  It's nice to be missed and welcomed back so graciously.  Adam had the girls at home and they enjoyed their afternoon playing as daddy does.  I even got to spend the money I just made at work on a shopping trip to Marshall's; mainly for the girls but the clothes are so darn cute!  I just couldn't help it ;-)

After getting the carpets cleaned and G's blood drawn by our nurse Ellen, the girls and I took off for a little road trip to see my parents in Lincoln at their new house.  Gabriella kept saying, "We're going to England." And people would say, "Really, England?"  She would say, "Yes, that's where my Papa and Nana live".  Then she would say, "Wait mamma (her new name for me), where do Nana and Papa live?".  I would tell her Lincoln and she would say, "Oh, Lincoln, not England" and giggle.

The girls with Papa and the Halloween witch and their "do-rags".

Having milk and relaxing before bedtime.

This is pretty much how G sleeps...with her elbows in your face.  

I was a little nervous about the trip but made sure I had plenty of supplies just in case and knew the location of the nearest hospital.  Luckily I brought a couple of syringes of GCSF with me just in case I got the order from the doctors.  When we got there, we had a grand time just hanging out, carving pumpkins, going for walks with Papa to find the wild turkeys and relaxing.  Bridget ended up with a stuffy then runny nose (yikes) but the doctors gave the go ahead and give the GCSF to G to boost her immunity so she could be on time for her next chemo.  Lots of hand washing, spraying and G's will not to get sick worked...again.  On the way home, we decided to take a detour to the Jelly Belly Factory in Fairfield.  The girls went nuts and enjoyed picking out a "couple of things" to buy and enjoy.  Bridget actually found her way into a box of Jelly Belly's and ate the whole thing while I was driving.  Lesson learned....don't leave a 2 1/2 year old with a box of candy and expect her not to get into it.  

In front of the Jelly Belly Factory!
Bridgy with her little bruised lip.

The girls in Jelly Belly heaven!

Love these girls!

Racing the Jelly Belly car.

Over the weekend, we got a chance to see the Peter Pan and Wendy play where Auntie Mel's daughter, Peyton starred as Tinkerbell.  It was G's second theater play and Bridget's first.  We weren't sure how Bridgy was going to do but they both clearly enjoyed it and sat through the whole play.  Bridget enjoyed clapping with everyone after the scenes and G loved seeing her friend Peyton as Tinkerbell.  Most of the cast even came out after the show to say hi to the girls and meet G.  She even got an autographed program from everyone in the show.  It was a nice escape and a fun family day getting to pick out the girls Halloween costumes at Woodworm and enjoy an outside lunch with some beautiful weather at Kianti's prior to the play.

Getting "glitter fairy tattoo's" before the play. 

The girls with Tinkerbell, Peyton.

An old friend of mine, who has traveled this journey with her son, reminded me recently that I need to stay positive and truly BELIEVE that G will be ok.  These are probably the best words and advice that anyone has given me and an email that I have referred to many times over the last 5 days.  It is so absolutely real, devastating, frustrating and emotional to be a part of this pediatric cancer world.  Getting to know other families and then hearing the stories of relapse...It just SUCKS.  It happened again today from another family we met at Camp and made me want to crawl in a hole.  It's like you're on one of those rides that just keeps spinning when you just want it to stop because you have this overwhelming sense that you're going to throw up everywhere if it doesn't.  Once the world stops spinning for a moment, I can come out of my hole and put my boxing gloves on again.

I have continued to remind myself what I have been reminded...I JUST HAVE TO BELIEVE that G WILL BE OK.  I have to stay positive for my family and for her.  I know she will come out of this just fine and we will enjoy a sweetness in life that we never would have known.  Thank you Kara for your ongoing support.  

This will be a huge reminder for me as we enter into the re-staging phase of our protocol....scans next week.  I can already feel the anxiety starting to overwhelm me.  The difficulty breathing and the need to plan, clean, keep as busy as I possibly can.  Not only have we booked our Disneyland trip, which we are so excited about, but I've already looked into a trip to Hawaii to celebrate our 10th anniversary, New York for a girls trip, our Disney World trip, cleaned the garage, carved a massive pumpkin, cleaned out the girls old clothes, worked on planning our next fundraiser, Christmas gifts, toy drive, cookie drive....whatever it takes to keep it positive and to get my baby through this.  

I just know that she is fighting this cancer with incredible strength and determination... as we all are.

Just Keep Swimming...

Kristin

Sea Salted Caramel for a breast cancer fundraiser.
Just wishing that all the pink I see this month could turn gold in September.  

Upcoming Scans

Today Kris and I drove to Packard to meet with her oncologists to talk about her upcoming scans.  This will be the second time we get to "re-stage" her cancer.  For anyone who is like I was seven months ago and has no idea what I am talking about, I'll explain.  As Gabriella's cancer treatment progresses, they occasionally want to know if it is working.  The only way to figure this out is to do MRI scans, CT scans and biopsies of the tumor and tissue surrounding the area where the tumor had been.  This is a pretty nervous time for us.  G will go up to Packard on three separate days for the appointments.  Day one will be a CT, day two the MRI and about a week later she has her exam and biopsies.  They put her under general anesthesia for the second two.  Last time this was done, we waited about a week before we got the news that things were shrinking and doing what they were supposed to be doing.
For the time during the scans and the wait on the news after, we will try to be positive and hope that the chemo and radiation have continued to be effective.  But there is always the thought in the back of our minds that the cancer is being stubborn and complications will arise.  It feels wrong not to mentally prepare for any outcome, but the alternatives are pretty unbearable not to mention we have no intention of letting G know we are worried.  So we paint smiles on our faces and push all the worry aside and move through it.  Yippee.

The last couple of weeks have been great.  G had a little bit of a rough time with her last chemo but they gave her two weeks off from the weekly Vincristine doses so we got to remember what it was like to be a normal family again.  We had a couple of rainy days and the girls bundled up and jumped in some puddles and ran around the yard enjoying the beginning of fall.  Kris and I talked a about taking the girls to Gabriella's preschool a little bit during the holidays so she can see her friends and enjoy some of the festivities.  We also booked a few nights in the Disneyland hotel for the week after Thanksgiving and will hopefully be able to take the girls to Disneyland for their first time.  We spoke to the oncologists today about it and they are going to do their best to schedule everything around it for us.  We bought the trip insurance just in case.  Monday will be round 9 of 14 of her overnight chemo's that she does every 3 weeks.  If we stay on this schedule we can be done with her protocol by the first of February but our oncologist told us today that the chemo may start having a more significant impact on her white blood cell counts and we may see it take longer to recover.  Which will cause us to wait longer in between chemo treatments and essentially lengthen the time of her treatment.  Yippee.

Team G

Adam

A Little Normalcy?

This past week has been spent winding down from the excitement of the recent bake sale and getting back to somewhat of a routine.  I would love to say things are 'normal" but that won't be a word we can use anytime soon.  I got to spend a wonderful spa day and catch up with a high school friend, which was much needed and welcome.  Thanks Julie for treating me!
Adam and I even got a chance to celebrate our 9th anniversary and went for a "date night" while a good friend watched the girls.  To say they were excited about hanging out with Kellie would be an understatement.  Adam and I got a few gym days in while the girls played together in the play area.  They enjoy swinging on the rings and running around on the gym floor after class.

Gabriella is a bundle of energy right now and is enjoying life.  She is doing so well and we are glad for that.  She loves to "perform" in the living room to whatever recent halloween music is playing by getting up on the foot stools and dance around.  Time to enroll in dance class.  Her ANC counts dropped as expected after the three drug chemo and flew off the charts by Thursday with the help of her nightly GCSF injection.  Something we still dread but it's gotten much easier.  The doctors are trying to figure out why her immunity drops so quickly after we stop the injection and at one point, we were looking at giving her the injection every day until her next three drug chemo.  Normally we have about a 10 day break in between but this is something that is still being determined.

Bridget is pretty amazing.  She is fully potty trained (except for night time) and did it all by herself.  Last week, I was so tired of her having the "me" (pacifier) in her mouth that I told her "no more...me is only for sleeping".  This was our original plan but radiation was so wearing that we just did whatever to get through it.  She wasn't too happy but complied quickly.  It's amazing how much more she talks and how well we can understand her.  A simple concept really.  She still loves to help give G her medicine and now likes to get her "port accessed too".  The other day, she was insistent about it so our nurse, Ellen did a pretend access.  She got her bandaid on her chest as well and made sure to show me when I got home.

This week also brought the return for a few days of work for me.  My manager Maryanne, has been completely supportive during this time and understands how difficult it has been.  My 6 months leave was coming up and it was time to make a decision.  After Adam and I talked about it, I knew I didn't want to loose my position.  I worked too hard on being a nurse to leave it, plus it's only one day a week at the least.  Kaiser has been an excellent employer to work for and it would be hard to find the position I have anywhere else.  The thought of going back to work, even one day a week brought on many mixed emotions.  I need some normalcy but will I be able to concentrate on the care of another patient knowing my daughter might need me at a moments notice?   Will I be able to "check my sh*t at the door" (something I was taught about nursing from the beginning and used to be able to do really well) and perform my tasks?  Maryanne worked with me to find hours where I could catch up on my annual skills and the yearly requirements Kaiser nurses need to perform before getting back on the unit.  It's nice to have the opportunity to "get my feet wet" and slowly work my way back.  At first, it was strange just being there and took a while to get used to.  As I was leaving, I was happy to have made this little accomplishment.  The girls had a blast with daddy (as usual) which made everything that much better.

The somewhat "normal" week we had also came with the news of another little warrior loosing her battle to cancer.  Heartbreaking, just heartbreaking.  It just makes me ill to my stomach to hear outcomes like this.  It shouldn't be this way.  Being a part of the pediatric cancer world, you never really get to leave once you're in it.  As much as I would like for life to become "normal" again, I don't know if it ever will.  Knowing these little warriors still loose their battles and don't get the chance to grow up, it won't be.

My mind is often distracted and fogged by cancer thoughts which makes it hard to focus.  It's the reason why I stay so busy with whatever positive I can involve myself in.  Whatever I can do to make a difference and to make this journey more positive for my little girls, I will do.  Cancer continues to haunt me in my dreams... or more appropriately in my nightmares.  I can consciously push it out of my thoughts during the waking hours but at night, the worries creep in and I can't stop them.  Sleep is few and far between but somehow, we learn to manage.

We are far from over with this journey as we come to the end of week 26 of 42.  In a little over a week, we will have our next round of three drug chemo with another doctor's meeting to discuss our progress.  The end of the month will bring a scans for re-staging as well as another procedure for an exam and biopsy of the primary tumor site to make sure the cells are responding appropriately.  This will all happen over a few days but it's not going to stop us from Trick or Treating and having a lot of Halloween fun!

Bake Sale...A Sweet Success

Bare with me...it's been a long couple of weeks...

What an incredible week!  And an even more incredible weekend!  September 30th will be a day that I hold dearly in my heart.  If you've been following the Facebook posts, almost everything I've put on there has ended in an exclamation point!  I just can't help myself.  The joy, the laughter, the excitement and the non-stop show of support from my family, friends and the community over the past week has been phenomenal.  It's really very overwhelming in the most powerful way.  I should have fallen over by now from exhaustion but I'm just thrilled at how many people came to promote childhood cancer awareness and raise much needed funds for childhood cancer research through amazing organizations like Cookies for Kids' Cancer.

The beginning of the week started with the usual...or unusual I should say.  I had to make sure this event was going to happen and going to happen well.  It was a steady stream of sending emails, making spreadsheets, returning phone calls, following through...every moment I wasn't spending time with my family, I was on the computer or the phone making sure things were getting done.  I do admit that the computer was in my lap much more this past week and I had to reassure my girls that this wasn't going to be the norm.  Pretty much every "free moment" this past month was making sure this bake sale was on the right track.  Many moments happened at the very late hours of the night; but it was that important.

Friday started with a steady stream of amazing bakers who took on baking the recipes I handed out for the cupcake pre-orders.  It was pretty incredible how well the bakers all came together for the cupcakes and all the goods in general.  Saturday was spent with more cupcake drop off's in the morning then off to Pacific Cookie for the bagging party and arrival of baked goods.  To see community members, friends, and family coming through the doors with baskets, boxes, and platters of treats was just a site to be seen!  I felt as if I were floating on a cloud just watching this incredible outpour of generosity coming through the doors.  Something completely extraordinary and marvelous happened those two days and it all left me speechless.  

Sunday came along and we were fired up.  Everything just happened and came together without a glitch.  As the day started to unfold, my Gabriella's precious face and all the little reminders started to appear in my head. They were all the reasons we made this bake sale happen...those brave children and families that are traveling this similar journey.  Some are still fighting, some are alive and well, some are on the verge of loosing their battle and some have become angels too soon.   Running up and down the street doing my best to pursued onlookers to come and buy treats made me take a look at all the reasons I'm here...loosing my mind, chanting songs and making them up as I go along, sun blasting on my face and arms, etc.  But it was easy to remember as my little girl came up to me, gleaming bald head and beautiful big eyes...I'm doing it for her, I'm doing it for all the little warriors out there fighting cancer...fighting for their lives.  It's unbearable to think about the therapies these children endure yet alone watch it happen to your child.  So I will push on until there is a better way.  

There are so many people who contributed to this event and deserve a ton of recognition for helping put such a memorable and amazing event together.  I'm not even sure how to thank everyone but I'm going to try.  Cara from Pacific Cookie has been amazing.  There is NO WAY this could have happened without her amazing efforts along with Michelle Riddle, who has been there with Gretchen from the beginning of Cookies for Kids' Cancer.  These ladies know how to plan an event so make sure you attend the Mama's Night Out Event in May 2013 ;-)!  My fabulous high school friend, Kellie of Surf City Coffee was the force behind Aptos along with fellow cancer mamma Claudia, Mariela and their whole family.  In addition to starting her own non-profit, Teen Kitchen Project, fellow cancer mamma Angela was another driving force behind Capitola along with Laura, Kathy, Rick, Alison, Jessica, and the many volunteers that came out to rally.  Rachael facilitated the use of her business, Drawn2Art, which Larisa headed up and Stacey rallied the SV Market location with all the participation from the parents at Circle of Friends Preschool.  Jen and Jamison made special trips to pick up coffee donated by Surf City Coffee and drop them off to different locations.  Brittany, one of my closest friends and Nik, our delightful neighborhood friend hit the streets clothed as an adorable pink cupcake and a big blue cookie monster.  Brit is about 6 months pregnant and Nik attends SV Middle School.  They went to cheer on volunteers at every location and draw in the crowds to buy treats.  Just incredible.

At the Capitola location, we were visited by our comrades we met at Camp Okizu who know all to well what this journey entails and "Squishy", G's favorite camp counselor.  Mel, better known as "Auntie Mel", Jeff, Kirsten and their girls, Bill, Uncle Ronnie, Lauren (also a survivor) and her friend along with the Girl Scouts were out waving signs and flagging people in to buy treats.  At one point, Alison, Julie, Jen and I went out with cookies to sell in the parking lot.  We actually sold a good handful because in this world or pediatric cancer, every bit counts and every bit makes a difference.  

Surf City Coffee in Aptos had some serious motivation by Kellie and lots of volunteers were out in full force getting people into the bake sale. From what I hear, Kel was pretty much chanting, flagging people down and bringing them in the whole day!  Claudia, who recently lost her daughter Tianna, was out there with her family including little sis Leilani, who had the biggest smile on her face the whole time...bake sale day and bagging day!  So beautiful to see.

My sister Bronwyn, her boyfriend Andy, mom Loretta, niece Iskandria, Gail, Bonnie, MJ, Anders, Elena, Deb and Stephanie helped hold signs in the street and sell away at the Scotts Valley Drawn2Art location.  They were doing awesome as well!  When I drove up in the afternoon, I could see they needed a little more excitement on the street to bring in the customers and needed to be more present when the public drove into the parking area.  We shifted the whole bake sale to the front of the parking lot, grabbed some signs and started chanting on the streets! 

The SV Market was killin' it all day and I didn't get a chance to say hi before the day was over but I knew they were in good hands.  

Along with over 130 volunteers, including about 60+ bakers making treats, 12 cupcake makers, 50+ volunteers for the day of event...picture takers, sign makers, banners, flyers, posters, sign holders, etc. the bake sale went off!  
The contributions came from these different local (and non-local) companies:

Pacific Cookie Company

Sassy Cakes and Cupcakes

Surf City Coffee

Woodworm Party Store

Circle of Friends Preschool

Fresh Prep Kitchens

Drawn2Art Scotts Valley

Scotts Valley Market

Gayle's Bakery

Just Cake in Capitola

The Sugar Fairy in Morgan Hill

Sugar Bug Sweets
Patti's Perfect Pantry

The Capitola Mall

Coastal Vibe Dance Company

Omega Nu Santa Cruz Chapter

Opal Cliffs School

The Ginger People

Birthday Cakes 4 Free

Ow Commercial Properties

The Buttery

Cribs Daycare

Santa Cruz Community Media Lab

Santa Cruz Sentinel

Everyone came out in full force to make the day special, unforgettable, remarkable and one that will continue to stand out in my mind.  It was a day when our community came together to make a HUGE impact not just on the lives of children fighting cancer but on the lives of each other.  Over $22,000 much needed precious dollars were raised for Cookies for Kids' Cancer.  It was truly "magical".  

Me and Cara sporting the Team G t's

Girl Scouts pitching in

Close friends Gail and Valerie with my mom Loretta,
Catherine with her baby girl, and G having a fun time
with cousin Iskandria and school buddy, Shelby

Girl Scouts having a good time

Super sweet Leilani making sure that things were getting done!

Gorgeous cupcakes from Marina Sousa

Setting up at Scotts Valley Market

Working hard to flag 'em in

Lovely ladies ready to sell

Precious friends from Camp Okizu

Me want COOKIE!!!

Aptos Location

Me want MORE COOKIE!!!

Kellie working her magic

CRAZY FOR COOKIES!!!

"Squishy" from Camp Okizu

Our "roomies" at Camp Okizu

More signage power

Me, my mom and sister

Adam, G, Bridget and Cookie Monster Nik

Baby B with Cookie

October 1st... Three Drug Chemo Overnight #8 of 14

Monday night was spent at El Camino Hospital receiving Gabriella's 8th round of chemo.  It's the combination of three chemotherapy drugs that forces us for a 24 hour inpatient stay mostly for pre and post hydration.  She needs to have her kidneys flushed as much as possible so the toxic chemo doesn't sit and harm her bladder.  With all that fluid going in, it makes for a long night.  

Gabriella enjoys going to the art room to paint, playing with the dogs from pet therapy and watching movies but doesn't like the fact that she has to pee every two hours. She's not big on pausing what she's doing to go to the bathroom especially when she's watching a good movie.  So I have to do a lot of prompting.  
"Are you sure you don't need to go?".  
"Mommy I don't need to go". 
"Why are you wiggling so much?".  
"Because I like it." 
"You need to let me know soon so I have time to take you to the bathroom."   
"Mommy I really don't need to go.  If I say it three times, that means I don't have to go; I don't have to, I don't have to, I don't have to."

Finally after wiggling, squirming and trying to hold it in, she admitted and said, "Ok, mommy, now I need to go".  I unplug her IV pole, make sure she's not tangled up in her "strings", grab her and try to make it to the bathroom in time.  She just couldn't hold it in any longer and the pee started dripping on my arm, on the floor. I couldn't help myself and just started busting up laughing. She thought it was pretty funny too. Since the chemo is toxic to the skin, we needed to wash it off quickly.  I got a bunch of towels and hospital grade wipes, gave her a quick shower from the belly down, cleaned (or sterilized) the floor, and put her in some fresh pajamas for the night. 

With a little convincing, we acquired the room with two beds, one where we've stayed before and were able to push the hospital beds together in attempt to get some rest that night.  As I watched her sleep and thought about trying to sleep myself, I made an attempt to update the blog. I think I was just too overwhelmed and exhausted to find the right words. So, I took G to pee again and shut the computer.  It was a long night changing sheets, changing pajama pants and going to the bathroom about every two hours, sometimes every hour. 

A special visit from the guys at Santa Clara Co Fire Dept Truck 5

Lucky daddy...lucky girls

Adam came from work to pick us up the following morning. It's been a while since G has gotten the three drug chemo since they stopped the dactinomycin during radiation.  Needless to day, she felt pretty crappy that morning. Her temp was running a little high on top of it so we were concerned.  After more fluid and a temp that was trending down, we threw some "day" clothes on (as G likes to call them), got our discharge papers and headed for home.  We stopped by the Santa Clara Co FD administrative offices to check in on the t-shirt and goodies Adam left to sell after the bake sale.  In jeans, sandals and tank top previously slept in the night before, we brought G in to say "hi" and use the restroom of course.  Gabriella and I both got a chance to meet some of the dynamic and influential individuals behind SCCFD, including Chief Kemna.  A very charismatic group of gentlemen, especially the Chief, who I got to thank for the delicious ice cream he and his family made for us during the summer.   If I would have known we would be meeting everyone, I would have at least put something nice on for the day!  These guys along with the rest of the department have been incredibly supportive through this whole journey and for that, I am so appreciative.    


THOUGHTS ABOUT HOSPITAL...

One of the movies that we watched over and over again when Gabriella was first diagnosed was Disney's Tangled. It's still on the list of recorded movies every time we go to the hospital and G insists on watching it on every admission. I love this movie but I hate at the same time.  It brings back all those memories when we were first diagnosed. Towards the end when Rapunzel sang her song to Flynn to heal him, the tears started rolling down my cheeks. The song triggered so many emotions from those early days; not knowing what kind of cancer Gabriella had, not knowing her chances of survival, thinking there was a chance I could loose my baby, and just waiting. I tried unsuccessfully holding the tears back and kept trying to wipe them off my face as they came down so Gabriella wouldn't asked me what was wrong.  We've managed to keep things positive for her and I can see how much she's growing from this experience, unfortunate as it is.  I know her chances are good and I have so much hope that she will be cured. 



GOING BACKWARD TO LAST WEEK...

Last Monday we got the opportunity to meet with the Gretchen, founder of Cookies for Kids' Cancer and Emily Fowler, executive director for CFKC. Gretchen has a presence about her where she can light up a room. I'm so inspired by what she has done with this organization and pediatric cancer in general.  How inspiring to overcome the adversities she faced and the hardship that her family has endured. She could have easily walked away when Liam passed but she continues to fight this battle for the all the children and families out their struck by this horrible disease. How very honorable.

One last note before this post gets so incredibly long...or even longer...
We had a meeting with our doctors last Thursday.  After talking with Gretchen and questioning whether or not I was truly doing everything in my power to cure G, we called a meeting with our doctors who were able to schedule us a couple days later.   We had a great conversation with Dr. Marina and Dr. Aftandilian and again, I felt confident and reassured that we were on the right track and in wonderfully capable hands.  

And we continue our fight...

Kristin