"Totally worth it"

We have returned from Disneyland.  A little more grey hair but all in all a good trip.  I'm sure that Kris will post with all of the fine details so I will give the Readers Digest version of our trip.  We left early Sunday and made fairly good time to Disneyland.   We checked into the Disneyland Hotel and had some dinner.  Then to our room to watch the Disneyland fireworks and bed.  Monday morning started with flat tires on the stroller. We sent the wheels down with a worker from the hotel who managed to destroy one of them while pumping it up.  The result was two rental strollers and a free meal and free night in the hotel.  Unbelievable customer service.  We spent the day in Disneyland where the girls were treated to a makeover at the Bibbity Bop Boutique, complete with a hilarious hairdo for Bridget and a beautiful Rapunzel wig for G.  It was great to see G with hair again.  We spent the rest of the day riding rides and having dinner with Princesses.  We watched the fireworks from Main Street in Disneyland and got to watch it snow in Southern California.  The look on the girls faces were precious.  The next morning was breakfast with Minnie Mouse and then we noticed G starting to run down.  By about 1:00 pm she was looking pale and feeling warm.  Kris and I went into cancer parent mode and b-lined back to the hotel.  G went to bed and relaxed for a couple of hours.  After some food, rest and water she was feeling much better and wanted to watch the evening parade so we jumped on the Monorail and rode back into the park to watch the parade.  The next morning G seemed pretty tired.  We met Grandma and Grandpa for breakfast and on the way out Grandpa was carrying her.  I looked over and saw her eyes roll back in her head and go limp.  Once again we went into cancer parent mode.    We had pre-planned the closest Children's hospital and knew where we were going and what we needed to do.  Luckily Children's Hospital of Orange County was close and they were not too busy.  Kris was able to access her port after the nurse's first attempt was unsuccessful.  G got fluids and had blood tests so we knew what we were dealing with.  Turned out that everything looked pretty good and she probably just got run down.  We were discharged and went back to the room to recover.  That night G started feeling pretty bad and vomited a couple of times.  This morning she woke up with a low grade fever which caused us some concern and made the decision to drive home pretty difficult.  We made the decision to head north and the girls were amazing for a hard press home.  With hourly temperature checks and multiple pee stops (we were pouring lots of fluids into G) we finally made it home and G is feeling much better.  Like I said, all in all a good trip.  All's well that ends well I guess.

Adam

AN EVENTFUL TRIP


I wish I could say our Disneyland trip was 100% event free and purely magical (which it absolutely was) but it wasn't event free. I'll start off with the magical.The drive down was pretty decent although it took us 8 hours...driving. We were thinking of flying but being a big holiday travel day and taking about the same amount of time (airport drive, flying, car rental, etc.) we thought it would be best to drive and enjoy the ride. Traffic was thick once we hit 46 but after 19 "How much longer"'s, we were there. Adam and I had a bet to see how many "how much longer"'s we would here...I bet 30 and he bet 25...he won.  At one point, Bridget started to say, "I wan yo go ome" and kept asking to go home. G kept trying to convince her how much fun she would have.

As we drove up to the Disneyland Hotel, the girls became incredibly excited. The lobby smelt like cotton candy!  Adam called ahead to set up a special surprise in our room...we walked in to snowflakes, glowing lights, cookies and treats, Mickey and Minnie stuffed animals, autographed pictures, and a gorgeous view of Downtown Disney.  As the girls were absorbing every inch of the excitement,  Adam and I were trying to hold back tears of gratitude...overjoyed that we got the chance to give our girls this opportunity, grateful that we made it, and exuberant of the exciting days to come.  Needless to say, Bridget stopped asking if we could go home and when asked, she would reply, "I don wan yo go ome".   (We're working on the speech and getting rid of "me" still.)

G has had a persistent cough, same one I had after the sinus infection and same one Adam got after me. I feel terrible to think I gave it to her.  We were keeping a close eye and all ears on the situation. After dinner, we were attempting to get the girls to bed at a decent time (ha ha) and the fireworks started. Our room had a "premium view" (not only of the fireworks but of the downtown as well) and we got to watch them as the colors lit up the sky.

The following morning was spent with a quick breakfast and an appointment at the Bibbity Bobbity Boutique.  Gabriella was in heaven as soon as she walked through the doors. All of the fanciest princess dresses with all the accessories were displayed on a huge wall and the "salon" was in the back.  Bridget wasn't too excited about being a princess but she was pretty sleepy still after the long ride. I knew she would have wanted the princess experience when she saw G doing it so I bribed her...with sugar gummies. I know, I felt like one of those crazy toddlers and tiaras parents forcing my child into dress up but I knew Bridgy would love it once she got going, especially once she saw how much G was enjoying it too. I didn't want her to miss out on the experience.   G chose Rapunzel (hmmmm...coincidence?) and Bridgy (after not wanting to be a princess, being indecisive, us choosing the Brave character for her and her saying "no"), she chose Rapunzel as well.  Once again, as Adam and I tried to hold back tears as we watched our little girls transform into full princess characters as make-up was applies, nails were painted, hair was styled for Bridget and as the "maids" placed a long Rapunzel braid on G's bald little head which she wore as proudly as she wears her beautiful bald head.  After they were finished with the princess transformation, glitter dust was applied and the curtains opened so they could see their glowing faces in the princess mirrors. They were escorted into the back where a beautiful Cinderella carriage awaited and they got to pose for pictures.  I thought it would be fun to have Bridget with rainbow braids in her hair but she picked out a tiara. After mommy decided the rainbow braids would be fun for her and were applied, she took one look in the mirror before ripping them out. The tiara was then applied. Mommy lesson learned.  

I'm not one who spends money cavalierly on these kinds of things but to see the joy it brought to both my little girls and to us as parents, I would gladly do it again.The rest of the day was spent riding a few rides including Small World, The Haunted Mansion (luckily Bridget was asleep in my arms through the whole thing), Pirates of the Caribbean , meeting princesses, having dinner at Arial's Grotto with more princesses, we ended our day catching a parade at California Adventures and the middle of the holiday Disney parade at Disney Park. The most special part was standing on Main Street to watch the fireworks and to experience the snow fall on our heads. Talk about magical.  To watch the girls faces in utter amazement at the site of all this activity was just so overwhelming. I was overjoyed we all had the chance to experience this together...and the tears started rolling, and rolling.  

The next day was more of the same. Bridget wanted to be in regular clothes (I didn't force her today) and G wanted to wear her Rapunzel wig and dress again.  I think she was really excited about everyone complimenting her on her "hair". Wherever we walked, people just stared and smiled at both the girls. It was a nice feeling for people to be staring at both of my daughters incredible outfits rather than staring at my child's bald head.  It felt somewhat normal.  We finally got to meet Rapunzel and Flynn after chasing them down the whole day before. But G was worn out. We got worried. So much excitement had taken a toll not to mention her nagging persistent cough that to our cough sensitive and sickness sonar ears had gotten worse. We took her temperature and it was 99.6. Ok, stay calm. We had her drinking lots of water and took her jacket off. Temp 45 min later 100.0. Shit. Anything above 100.4 is an immediate trip to the ER.  The fun stopped and the survival mode took over. Back to the hotel ASAP, make a plan to go to the hospital and check her temp again.  Oh yeah, did I mention our stroller tire was blown up accidentally by the hotel. They more than made up for it with stroller rentals, stuffed Minnie's for the girls, a free dinner, and they ended up comping us our last night after hearing our situation.  But the strollers had to be left at the park entrance and we had to walk through Downtown Disney carrying one sleeping child, one exhausted on the verge of getting sick child, a purse, camera, clothes, snacks and jackets back to the hotel. Both of us got a sustained biceps workout with a little cardio on top.  We also got smart and ditched the strollers at the monorail station, which dropped us off a shorter distance to our hotel.  G drank lots of water and rested while we kept our fingers crossed that we wouldn't have to hit the ER while making the "just in case" plans. Miraculously her temp kept going down.  We bundled the girls up, made it back to Disney, found our strollers, met up with our good friends and next-door neighbors and got to watch the magical holiday Christmas parade together. Once again the girls were in awe...and so were we.

The next day after breakfast where Grandma and Grandpa drive to meet us, G had a syncopal episode seeming to be from exhaustion.  Her eyes rolling into the back of her head and her head fell on grandpas shoulder.  Panic set in once again as we rushed back to the hotel room and called G's doctors. We just knew at that point, a trip to the ER was inevitable. Adam and I took G.  Luckily Grandma and Grandpa were there to take Bridget out for some fun. At the ER, Adam and I were debating weather or not we should do her access. After one miss from the nurse that left G screaming and in tears, we decided to do it. She wanted "Momma to do it".  Oh boy. I handy yet accessed her but I've seen it a million times and I've done it before many years ago (on other children, not my own).  I'm not sure what happened but I knew I just had to get it in and get it on the first try. Missing and fumbling around wasn't an option. I knew G was scared because the nurse just missed and she screamed like I haven't heard her scream in a long time...maybe ever. I wasn't going to let her feel that pain again.  Calmly and confident on the outside because I knew G would sense my tension , while trying not to panic on the inside, we did the princess count, got the access in and it flushed beautifully.  My years of second natured nursing practice took over.  The blood flowed back and we were in business.  Relief.

Her blood and other tests came back great and we were off. G kept asking to go to Build a Bear when we got out and of course, we promised her. Once we got back, she was feeling pretty lousy and didn't want to go.  Not usual. She complained of her tummy hurting and up came the throw up. Damn. I don't think the lollipop agreed with her. After that, she fired up and begged us to go to Build a Bear.  Did "no" ever cross our minds...no way!  We went long enough for the spurt of energy to keep her going but it wore off soon and back to the hotel she went with Grandpa and daddy.  Grandma, Bridget and I went to eat (and have margaritas) so G could rest. But all too soon she started to feel crappy again and threw up then passed out on the bed.

A decision had to be made today; head to Grandma and Grandpa's who were an hour away, stay a little longer and make sure she was ready for the drive, or make a run for home.  We chose option #3 and hit the road making sure we had a plan just in case she started to spiral.  We made sure we knew which hospital's were on our route, had the access kit handy, and for the more rural areas (yes, some do still exist in California)...we were ready.  Temp check right before we left was 100.2, held steady at about 99.9 for a while but decreased as we pushed the fluids and made our way.  Needless to say, it was an intense drive home.  The girls did amazingly well being entertained with videos the whole way. 

By the time we all got home, Adam and I were so relieved.  He ended up with a headache and I ended up with a bloody nose.  But to see our girls enjoy their adventure, it was all worth it!    

Now it's time to sleep.  More pictures soon!  

TEAM G "PROJECT HOLIDAYS"

Team G's Adopt-A-Family

Through one of the local agencies, Jacob's Heart, who provides services to childhood cancer patients and their families, we have already adopted 28 children fighting cancer and their families for the holidays.  They each had a "wish list" of three gifts while the parents had "wishes" for gas cards.  With your generous help, these families are going to have a holiday they won't soon forget.

If you are involved, the wrapped and labeled gifts with the family # need be dropped off at my house on December 5th.  I'm sure you've received the email ;-).  We would be happy to take the families more gift cards in any amount from Target, Kmart, gas cards and grocery gift cards.

If you would still like to be a part of adopting a family, there is still a need for car maintenance and tires for these families.  They spend many hours in the car driving back and forth to the hospital.  Angela has set up a fund, talked to local mechanics and arranged for discounted tires at a local shop.  Please contact Angela at angelafarley007@yahoo.com for more detailed information.  

Adoption for families through another local bay area foundation called "There With Care" is still needed.  Please contact this organization if you are still interested in adopting a family.

Our garage...staged and ready!

Team G Toy Drive 
    
Trust me, I'd rather have all the money spent on toys go to curing childhood cancer but I truly believe that a little happiness for these children will lift their spirits and help them fight this disease.  Below is a list of acceptable items for the children at the hospital.  The gifts need to be new and in their original packaging.  We are asking for gifts to be delivered by December 20th.  Santa and some elves will be joining us on December 21st to arrive at Lucile Packard 1 North (Cancer Unit) to deliver the gifts.
If you are wanting to participate, please email ronnie.boose@gmail.com for drop off information.

Team G Holiday Cookies

You can't go through the holidays without some good cookies to buy!  Near and dear to my heart, we are selling cookies by the dozen for the holidays and all the funds will go to Cookies for Kids Cancer. The flavors will be chocolate chip and shortbread.  They'll be wrapped with a pretty holiday bow and sold baked for $22 and unbaked for $20.  This is a great way to say "thank you" to teachers, family gifts, christmas parties, hostess gifts, or just to enjoy at home!

Cookies will be available for sale by the dozen at Surf City Coffee at the Aptos and Scotts Valley locations for the weekends of December 7th, December 14th and December 21st.  They will also be available at a couple of the local schools and a few other places.   Eventbrite page to come and information will be posted on Facebook.


If you just don't have the time to shop for anyone else, don't want to spend more money on more toys, or just don't want to add inches to your waistline (all totally understandable); you can always make a donation to Cookies for Kids Cancer, Jacob's Heart, Lucile Packard Foundation (make a notation specifically for childhood cancer research) or Make a Wish Foundation.  

Thank you again for making this happen and for ALL that you are doing to give these families something to look forward to this holiday season.  With the lack of time, the stress of having an ill child, the trips to the hospital and the huge commitment it takes to care for a child with cancer, not to mention paying the medical bills on a limited income, these families will be incredibly grateful for your support.  They will never forget how special you will make them feel and in return, you and your children will always remember helping another family in need this Christmas.

In Gratitude and Hope,

Kristin

I Am Thankful

Ahhh...a busy week and a rough one to get through while fighting off a sinus infection...the kind that keeps on giving.  We left off last week with a title of "Hope" even with some unexpected and unwelcome results from the pathology.  Again, I just want to clarify that even though cancer cells still showed up in the primary tumor site, it is not known whether these cells are "active" or not (remember we are talking about microscopic cells here).  There is still not enough information about biopsies of rhabdo tumors at this stage of treatment to verify what this means.  This is not just through our doctors but all of the pediatric oncologists who treat rhabdomyosarcoma and who are a part of the Children's Oncology Group, which is pretty much all of them.  So, what am I really clarifying?  Gabriella is still showing this cancer who is boss!  This is just a piece of the puzzle and the rest of the puzzle is a thumbs up.  We are looking at the whole picture...our patient...and SHE WILL BEAT THIS!!

G getting assessed by Dr. Aftandilian and Dr. Marina.

We had an enlightening meeting with Dr. Marina and Dr. Aftandilian where we discussed the results of the biopsies.  It's always helpful to meet with our doctors because we can just frankly talk about what's going on...well, almost frankly.  We discussed G's progress, get an idea of where we're going and planned for the next steps as well as discussed the psychological aspects of this journey which I find invaluable.   I haven't seen too many doctors sit down with families for over an hour on a regular basis for discussions but from some experience, I've learned that pediatrics is a whole different ball game.  It always gets a bit difficult when we have a set of 4 year old ears that hear everything.  Sometimes we definitely need to curtail the information because she's a smart little girl and knows when she's being talked about even if she's "checked out" playing on the iPad.  I wish there was a babysitting service for these meetings but I think the doctors are really good about monitoring the conversations.  I've always been the kind of mom who tries to "tell it like it is" (age appropriately of course) so my girls grow up with only minor surprises.  For instance, I let G know that her "button" is called a port, the meds that fight her cancer are called chemotherapy, the "strings" are called IV tubing, the sleepy medicine is called anesthesia, Zofran is for nausea, beef comes from cows, etc. etc.   When she asks me a question, I try to answer it as simply and honestly as I can without giving her the need to become anxious, just so she will know.  Of course, she doesn't need to worry about things that aren't going to happen so we don't discuss those.    
We were grateful for our supportive friends and neighbors, Matt and Jen, who took care of Bridget all afternoon on tuesday.  Ellie was in the caring hands of our dear friends Sue and Rene, Mel's parents.  Adam was at work but got coverage for a few hours to drive up for our meeting.



Wednesday was another trip up to Stanford to meet with Dr. Donaldson, our radiology oncologist who is quite charismatic and has taken wonderful care of G.  She has been treating rhabdo patients for over 40 years and is a wealth of knowledge when it comes to Gabriella's cancer.  We talked about G's progress and talked about future follow ups.  She verified too that there isn't enough information on rhabdo biopsies and that the information we received about the pathology is not indicative of the outcome.  The outcome is still positive for G to be cured.                                                                



The rest of the week was spent trying to recover, rest, and have a little fun in between.  We were offered to be a part of the "Sneak Peak" for the Train to Christmas Town, which ended up being shorter than the regular version but was perfect for the girls.  They got to see Santa, drink hot chocolate and eat ginger cookies in a real train.  It reminded me of the trains in Europe and of the book The Polar Express.  I would definitely recommend it for the little ones who would like a christmas train experience.

While we were on the train, both Adam and I got phone calls from the (650) area code...the hospital.  We also received an email from our doctor stating that G's hemoglobin was 7.6 (normal 12-16) and her platelets 41 (normal 150-400).  Her ANC was 1440...not too risky but still low enough.  Adam and I looked at each other and had the same panicking thoughts...we need to get off this train!  At that point, the train started to roll back to the station (at the Boardwalk).  G was pretty pale which I noticed the night before and she was getting really tired...quickly.  I started to collectively note in my mind at all her recent symptoms...fatigue, rapid heart beat, pale.  She needed a blood transfusion.  This is always a last resort but I knew it would be in her best interest.  We talked with the nurse and NP to schedule her the next day for a transfusion.  And off we went Saturday morning to the Short Stay Unit to fill up her tank.  She wasn't very excited to go but she is so amazingly compliant that after a short explanation, she just says, "Ok momma."  After the blood was drawn and her port accessed, we had to wait a couple of hours for the type and cross where they match her blood with the donor's blood.  The transfusion started while we watched Nemo and ended about 2.5 hours after with no complications.  Time to do vitals and take her temp...37.8.  Ok, normal is 37 and admit temp considered a fever that will end us as an inpatient for at least 2 days is 38.  We checked it again 30 min later and it was the same.  Oral temp was 37.4 and axillary was 37.1.  Whew, at least those weren't higher and she was feeling great.  We got the OK to go home!  Of course, she felt amazing and was bouncing off the walls.

Bridget was pretty happy to have her sister home.  She is normally upset when her sister has to go for long days at the hospital and really misses her.  I always try to let her know the plan for the following day without upsetting her too much and she mostly replies with "No, I wan G home." or "I don(t) wan to go to de ho pital."  We're always trying to make it a "fun" time when we get to go see the fish, the train or go do something special after.  Bridget has been so great and as usual, the tension breaker around here.  She is continuing her nurturing self and is always asking to "leep in G bed".

With the holiday crazies coming, I've already planned and shopped for most of my gifts...online.  The girls have a few goodies coming and will have an amazing Christmas.  They are each getting a "room" make over including some fancy mural paintings on their wall with the help of Papa's artistic ability and my painting ability.  Hmmm...just have to find the time ;-)

My sassy girls baking with the Easy Bake Oven.

Team G's Holiday Plans
(Details in the next Blog Post)

We have a few fun things coming up for the holidays. The beginning of last week, I met with some incredible ladies and we brainstormed on how to make the holidays unforgettable.  With the continuous support of friends and family, we've already adopted 28 children mostly through Jacob's Heart.  This wouldn't have happened without your continuous help!

There's always this part of me that asks, why am I doing all of this?  I'm sure my husband asks the same questions.  Why do I feel the need to constantly keep busy?  Well, there are a lot of reasons and I've been trying to sort it all out in my mind.  It keeps the journey positive for me and for my girls.   It keeps me on task and busy because when I'm not busy, I go crazy and think too much.  It reminds me the power of a community and the strength that comes out when people come together for a cause.  It reminds me that I'm not alone in this journey.  And most importantly, there are so many families and children dealing with cancer who need much more help than us.  Just knowing what these families go through and to realize how much support we've received, it doesn't feel right to not help.  This is how I thrive.


Thankful

As we work our way into the holidays, I am continuously reminding myself of things I am grateful for.  There is a dark cloud constantly looming around our heads trying to take our happiness but we continue to push it away and let the sun shine.
I am thankful that my daughter, G who is as sassy as ever, fun loving, charismatic, always living in the moment and who remembers everything.
I'm thankful for my little Bridgy who is growing into such an amazing little sister, nurturer, friend and daughter.

I am thankful that both my girls are enjoying life and growing up together.

I am thankful for my husband who is such an active, caring and loving father and who would give the world to me and my girls on a silver platter.  

For my parents and parents-in-law who switch off driving long hours to our house every other week to make sure we are covered during long chemo's or procedures, who cook and clean and help with the laundry.  

For our furry little friend who is so loyal to our family that she will climb over a fence and run out to the freeway just to find us.
For good neighbors who are some of our closest friends that live literally right down the street and will help us in an instant. 

For getting to enjoy juicy red pomegranates with my girls while reminiscing of sharing these fun fruits with my sister and cousins at granny's house.  

For people who give their heart and soul to help the likes of others. 

I have so much to be thankful for.  

Life is a gift. 

Hope

We met with G's oncologists again today to talk about the biopsies they took last week.  I had a feeling we weren't going to hear what we hoped to hear and I was right.  The last biopsies they took 3 months ago showed little to no immature cancer cells.  The cells they harvested were mature or maturing cells.  This time they found cancer cells in the biopsies.  The most likely cause for this is sampling error.  Last time they drew the biopsies from parts of the area that did not have cancer cells even though they existed and this time they drew from the area where the cancer was.  If that is the case, we will just continue on and hope that in the next twelve weeks the chemo will finish it's job and there will be no more abnormal tissue to biopsy.  If is in fact coming back and the biopsies were representative of reality, we are in for a little more than we initially thought.  Dr. Marina is contacting the chairman of the Childrens Oncology Group in Seattle to find out what the research shows people are using to fight rhabdomyosarcomas that are resistant to initial therapy.  I sincerely do not believe that this is the case.  When we put the whole picture together, the fact that the primary tumor is gone and the secondary tumor in her lymph node is 51% smaller than it was three months ago indicates that the chemo is working and we are beating this thing.  There are just no other options.  We fight on.


Team G

Adam

I thought I'd add to Adam's post to explain what I heard in our meeting.  The results of the pathology report is just one small piece of the big puzzle.  I was always taught in medicine to look at the big picture...the patient and they will guide the treatment, recovery, etc.  Gabriella is doing amazingly well, despite the three drug chemo which she bounces back from every time.  Granted it is taking longer for her to recover and her body is getting more tired but she is still bouncing back.  As our doctors told us in the meeting, sometimes obtaining more information is not the best option.  The placement of G's original tumor IS easily accessible VS. other children's tumors which are normally NOT biopsied at this stage of the treatment.  They are mostly biopsied in the beginning because access to these areas where rhabdo can appear (abdomen, sinuses, extremities) are difficult to get to because the child has to go through major surgery and the risks are too high.  We asked our doctors how often they see cases of Rhabdomyosarcoma...5 to 6 a year.  We asked them how many cases they've seen where placement is similar to G's pelvic rhabdo....1 ever 2-3 years.  Over a course of 20 years, that's less than 10 patients a year!  Basically, we are exploring in uncharted areas.  The doctors don't know what it means that they found cancer cells still with the biopsies.  They don't know because it's not normally done.  They can't tell us if it is still active.  Most likely, the cancer was still there with the last biopsies BUT they didn't actually obtain a sample of those cells.  We are talking about fishing for a needle in a haystack here.  Even if we did a PET scan at this point, it would not be conclusive.  Thus I say as our doctors told us, the overall prognosis is still GOOD, her CT still showed signs of NO METASTATIC DISEASE, and her MRI still shows SHRUNKEN LYMPH NODES.  

Going to meet with our radiology oncologist today, Dr. Donaldson. 

In Hope and Gratitude.  

Kristin

Damned Chemo

After talking on the phone via our FaceTime with daddy, Bridget, Grandma and Grandpa tonight before bedtime, G became sad and started to tear up.  I asked her what was wrong but I'm not sure if she could find the words to describe how she was feeling.  I asked if she missed grandma and grandpa and she said, "yes" in her calm sweet voice with tears bundled up on her cheek.  She said she missed daddy and Bridget too.  I told her it was ok to feel sad and it was ok to feel frustrated that she wasn't at home but had to stay in the hospital.  I reminded her what a strong, brave little girl she is and how proud I was of her for fighting this battle with such grace and determination.  I reminded her that for every bad moment in this journey, there would be so many countless good memories that will take its place.  After we talked for a moment about the good things that were coming up like Disneyland, her birthday and Christmas, she drifted off to sleep.  I kissed her precious little bald head and tucked her in.

THE WEEK'S BEGINNING

Monday morning was pretty calm as we got G ready for the hospital. Grandma and grandpa arrived the day before to help us with Bridget.  Even though we had a great dinner, G wasn't eating much. Since she just filled up with milk (and she loves her milk), she told me "Mamma, I'm already full...see how big my belly is" and show me her belly while she bounced her finger off of it a couple of times.  She knew she wasn't going to be able to eat in the morning and she was ok with that.  G and Bridgy were having so much fun before bed with grandma and grandpa that going to bed was the last thing on their mind.  The day of her procedure came and I had a surprise for G. I asked "Squishy" (aka Sarah) if she was going to be around campus that day.  Squishy was waiting at the hospital when we drove up, and needless to say G was pretty ecstatic.  Bridgy was pretty happy too.  The usual happened with pre-op and went smoothly.  After Adam took G back to the operating room, donned in the space outfit he needs for the sake of keeping sterility in the OR and watched as G was put into her medically induced sleep, Sarah and I watched as Adam joined us, rattled with foggy red eyes.  It's never easy to leave your child in a room with a bunch of surgical staff wearing green scrubs with their faces covered in masks and heads covered in caps.  All in all, G did great in the procedure, about 10 biopsies were taken from little polyps remaining from the tumor (similar to what they had seen upon her previous exam) and the results for these will be back next Tuesday.
We had a night of recovery on Monday, relaxing at the park on tuesday, so we could be ready for chemo on Wednesday.


THREE DRUG CHEMO #10 (of 14)

We checked into El Camino on Wednesday, a day early for her three drug chemo.  Prior to that, she was scheduled for her chemo this coming Monday but since she has been recovering so incredibly well via her immunity and blood counts, the doctors decided it would be best to bump her up and get number #10 under our belt.  It's getting harder and harder to get G to El Camino because it's "the big hospital where they make my tummy hurt" but she's so damn compliant and trusts that we're doing what we need to do.  This was probably the roughest chemo that she's had since the beginning.  After the vincristine, dactinomycin and cyclophosphamide were in, it took about 4 hours for her to start throwing up.  It just came out of the blue while she was painting. This time we were trying to be more prepared and despite the ativan, benadryl, and a new anti-nausea med called kytril (to replace the zofran), she still threw up...more than once.  She didn't cry, scream or holler during any of it.  Just threw up and went back to resting after I cleaned her up.  Aggravating is the best word to describe it...just aggravating to watch your child have to endure this.
She normally pee's every 2 hours because of all the IV hydration she gets but her little body just needed to hang on to the fluids after all the vomiting.  It wasn't until about 4 hours of no urine when I started to get concerned.  The medication, cyclophosphamide is very toxic to the urinary tract (which is the reasoning for the 24 hours of IV hydration plus another medication called mesna to help protect her bladder) so they want her peeing at least every 4 hours.  After bringing this up to the night nurse and asking for a fluid bolus, she finally started peeing again, every couple of hours.

Normally we are scheduled to leave for home the next day but this time was different.  G just wasn't feeling well and wasn't all that excited to drink anything.  Our nurse practitioner, Christy, mentioned giving Gabriella steroids (decadron) to help with the nausea.  After much thought and G not seeming to get better, we took this route.  Apparently, a small dose of steroids help heighten the drugs ability to work.  Ok, let's try it.  Most of the day went by with coercing her to take little sips of water and apple juice.  Finally the drugs started helping and she started eating a little more.  This wasn't till the later part of the day after we decided she should probably stay for more hydration overnight.  A couple of goldfish and wait about an hour...ok, good.  No vomiting.  A couple of strawberries....that went well too.  Great, we are getting somewhere.  She wanted to eat so I let her.  After more snacking on chips and pirate booty....uggg....it all came back out.  Damn it.  Damn it.  More meds, more pee, throw up on my jeans (whatever), cleaning up vomit off the floor, changing sheets, etc. etc.  She was off to sleep again.  My poor baby girl.  It was just brutal.
Forgot to mention being put on contact precautions because she was having some GI issues and they now needed to rule her out for c difficile, which can cause serious bowel problems.  She couldn't leave the room at all until she was cleared.  Since there was no more stool to sample, she pretty much got ruled out by the time we left.

The one thing that always rattles me and unnerves me is the smell...the toxic chemical smell after receiving her chemo.  It's in her urine and it's in her throw up.  Really?  This shit really goes into my child?  This toxic poison.... I can't even go there.
This time, some pee hung out on my arm a little longer than it should have.  My skin started to burn slightly.  These kinds of things can make someone go crazy.  The fact that we allow these drugs to be given to our children because the alternative is much much worse.  It just blows your mind.

Friday we finally got to break free and come home.  G was so excited and as soon as we hit the fresh non-hospital air, she was back to her little chatty cathy ways.  Even though it was much colder, the cool air was welcomed and made us both feel alive again...hopeful.

Grandma and Grandpa bought an incredible swing set as an early Christmas gift for the girls.  So, daddy and Grandpa worked hard to put it together in between rainy weather.  The girls were so excited and were out in the yard having a great time.  I'm sure it wore G out because she came up to my bed, where I was trying to take a nap and crawled right next to me.  It didn't take her long before she fell asleep and we both slept for over an hour.  Adam and I got to get out for dinner but got word that G had thrown up a couple more times.  Grandma and Grandpa had it under control but it's difficult to continue enjoying time out when our little one was throwing up. Home we came.

After such a long week, I was pretty much drained, emotionally and physically.  I received an envelope in the mail from my college sorority.  It was a check, probably the biggest donation we have received.  I was speechless.  I started to read the letter to Adam and burst into tears.  Having just gone through hell for the last few days, it just reminded me that there are so many caring and passionate people in this world...and they are helping us through this.  An amazing friend Jennifer Rappeport and member of Alpha Phi, my college sorority has been diligently following Gabriella's story.  With such heart and sincerity, Jen contacted the foundation to secure a donation for our little fighter Gabriella.  I'm just speechless Jen and I can't thank you and the Alpha Phi Foundation enough.  Many times I have though that "thank you" just isn't enough to let people know how much we appreciate the passionate efforts of support for our little girl and our family.  I am more than humbled and grateful for these people who have stood by our side and often, carried us through the rough times.

Sometimes it takes a horrible situation to make you appreciate life and the people that surround us.  I will never forget how many people have touched our lives through this journey.  Never.

Kristin

Amazing...AMAZING Results!!!

Bridget and G taking their nightly bath.  Bridget, the nurturer and caretaker sees G's bandaid on her arm from her recent flu shot, reaches over and grabs it.
As she's pulling it off she asks, "G, can I puw thi ban aid off?"
"Owwwww Brid-G-ET".
"(S)owwy G" as she hands the bandaid back to G.
"That's ok Bridgy".
They hug and both continue to play.


We received some truly wonderful and incredible news this week after G's scans.  The CT scan done on Sunday showed no metastatic disease in G's lungs, which we were expecting.  This would have been a sign of some serious progression which we knew wasn't the case.  The next day was the MRI done under anesthesia.  I'll just get straight to the results...the primary tumor is GONE!!!!!!  The larger lymph node on the right (the one that was more concerning) has shrunk MORE THAN 50% from the 2nd MRI...yes, the 2nd done in May!!!!  It has shrunk even more since the first MRI in March.  I asked to see the scans going back to May then the originals from March.  The results were astonishing from the original scans.  The tumor that originally occluded about 70% of her bladder is GONE!!!!


G was amazing with her scans.  She had to be NPO (nothing by mouth) after midnight for Monday's procedure but could have clears until 11am for her scans at 2pm.  Nana, Bridgy and G made lots of Jello the night before and stocked up on apple juice and gatorade.  Adam and I were able to get to the gym in the morning, which was much needed while Nana watched the girls.  When we got to the hospital and checked in to the pre-op area, it was strangely quiet.  The usual procedure happened, vitals, access, questions and off to the anesthesia induction room.  G, true to form, showed off her beautiful hand picked ruffled skirt and accessories to the staff, who ooed and aahed, rested her head on daddy's shoulder and waited for the milky white napping medication to hit.  She took a big yawn and was off for her MRI.  To ease the waiting time and the nerves, Adam and I got to visit with Dulce (who lives up to her name), my dear friend and Kaiser co-worker.  We talked, laughed and the time went by.  In the post-op area, we saw some familiar smiling faces of the nurses who cared for G so diligently after each radiation treatment.  De-accessed, home and now we wait....optimistic for good news.

Tuesday was probably one of the roughest days... just waiting breathless with the weight of the world on our shoulders.  I had an annual RN skills day at the hospital so Adam took the girls to visit with our dear friends Uncle Johnny and Auntie Una, who had rented a beach house in Aptos.   The morning brought a renewed sense of hope.  As I was driving to work, I saw the full moon shining big and bright while the sun pushed it's way into the sky.  Driving past the reservoir, wisps of steam were swirling off the water.  Something about this morning was different, besides the fact that I was up that early.  It was pretty amazing to see.  
Adam and I were both constantly checking our phones and texting each other to see either had heard anything after the email I had sent to Dr. Aftandilian.  We received an email letting us know we would talk about the results at our meeting on Thursday.  This sent me into a total panic not being able to hear any preliminary results and I just thought of the worst..."OMG...It's bad...no it can't be.....she's doing so well....why won't they tell us anything....wouldn't they tell us if it was bad...can't they tell us if things are looking good...something...anything"....etc. etc.  I finally broke down at lunch after visiting my manager Maryanne.  I just needed to hear something, anything.... this was about my baby's life and I needed to know....NOW!   But I know all too well the reasons they don't tell you over the phone or via email.  That just wasn't good enough and I needed to know.  Dr. Aftandilian finally let us know that everything was looking good...the tumor was gone, lymph shrinking and no metastatic disease.  It took a while to absorb but once I did, I started to scream, cry, laugh....AAAHHHHHH!!!!!  MY DAUGHTER IS BEATING THIS AWFUL UGLY DISEASE!!!!!!!  SHE IS A FIGHTER AND WE WILL ALL CONTINUE TILL IT'S ALL GONE!!!!!!  I can finally breath a little easier!!!

We are ecstatic to say the least!!!  I want to run up and down the street screaming, doing cartwheels, throwing my hands up in the air!!!!  Which I do but there is always something that stops us in our tracks. We don't want to celebrate too early and think that this is the end of our journey.  We still have a long way to go but it's exhilarating to celebrate the little victories along the way.  Actually, this was a BIG victory...just knowing that all this "treatment" is paying off and we are going in the right direction.  The thing with cancer that we know all too well is how it can sneak up on you, punch you in the gut and take your breath away.  A little part of us always wants to always be "on guard" and prepared.  How can we not be prepared for the unlikely when the unlikely has already happened to us?   My cancer momma friend Angela said it best in one of her bast blog posts in reference to taking her son for post treatment check-ups,  "So trying to reason with a mom who thinks her son has symptoms of something really terrible and unusual, after he's been through something else terrible and unusual, is not possible."
We fight our children's cancer AT ANY COST and believe that our child's cancer WILL NOT COME BACK.  We know that Gabriella's cancer is not as relentless as some of the other cancers out there and for that we are extremely optimistic.  But as a cancer parent, we will continue to be guarded and prepared....but definitely optimistic.


HALLOWEEN

With good news coming and more on the way, I was ready to have a really fun halloween...costumes, candy, trick-or-treating, and good friends.  Our tradition the last couple of years has been to head with our good friends, the Winters and trick-or-treat at the Vineyards in Scotts Valley.  Uncle Johnny joined us this year donning a funny costume.  Gabriella has been insistent about being a "rainbow with jewels on my wings and I glow up".  She talked about this costume for a couple of months and wasn't wavering on her choice.  A lot of people thought she was saying that she would blow up...but she wanted to "glow up".  Daddy made that happen by buying black light neon spray and a black light to shine on her all night...and that he did.  Bridget wasn't totally sure what she wanted to be but chose a bumble bee costume.  They both looked incredibly cute and we had a blast running from house to house with all the other trick-or-treaters on the streets.  Gabriella ran with Nicole trying to keep up with Brook and Bridget was closing in from behind.  B was trying to give her candy away at first but caught on to the idea that she collected the candy to put in her bag.  She made sure to turned around, waived to everyone that gave her treats and said, "Appy alloween".

The next morning, we got our sleepy, sugar hungover girls out of bed early to make sure we were at the hospital at 9am, which was a tough task in all the morning traffic.  We had a pee stop for both girls and a throw up stop for Bridget likely from too many treats the night before.   We met with our doctors, Dr. Marina and Dr. Aftandilian talked about the results and went over the procedure for this coming up Monday.  They weren't expecting to find anything new at the primary tumor site and we are incredibly positive for that news as well.  The exam will be done by Dr. Hillard, our pediatric gynecologist, who I got a chance to talk with the next day about the procedure and felt really great about the conversation.  Dr. Donaldson, our radiation oncologist will also be present for the exam.  Biopsies will most likely be done so we can see how the cells are responding under the microscope but they'll meet with us after the procedure to discuss what they saw.  We won't received the pathology results back till the following week but we're expecting more good news.

The last few days have been somewhat normal and it feels wonderful!  G got to attend her art class and Bridget has now pretty much potty-trained herself for night time...at only 2 1/2 although the "me" has found it's way back into her mouth.  I got to make a birthday cake for my sweet friend's little girl, Samantha who turned 3 and attend the birthday party.  My dear friends little girls (Addison, Samantha and Julia) were so sweet to G and Bridgy and didn't even bat an eye to G's bald little head.  Ahhhh.....a little glimpse of our pre-cancer life and life after cancer.....but much much sweeter than I could ever imagine.  Life is good.

HALLOWEEN FUN!!

Just love these little girls!!!

"Croissant Fit Trainer with the girls.
Bridgy not too sure about the outfit.  

Here we go!!

BIRTHDAY PARTY FUN!!

Enjoying green cupcakes

The birthday girl and lil' sis looking adorable in green tutu's!

My amazing friends and our girls!

The holidays are going to be AMAZING and I'm really looking forward to sharing them this year with my beautiful and amazing family and all of my friends!!

Continuing the fight and grateful for all the support,

Kristin

One last story as G and I were watching the World Series.
"Shhh, Buster Posey is up."
"What, bust my posey's up?"
"Lol...no honey, it's Buster Posey...lol"