Monday, April 30, 2012

The picture


One of Kris' new friends, Michelle Riddle took some pictures of G yesterday and this one really struck a note with me.  Her expression is one of peace and focus.  The softness of the light adds to her innocence in the frame yet the scars on her chest and arms tell a story of what she has been through and what remains to be done.
Kris and I were discussing some of the changes we have seen in G since this started.  I asked her if she thought that G has gotten sweeter since this began and we agreed that she has.  I'm not sure what the reasons are but I am watching her being more gentle with her sister, more polite to us(unless we are giving her a shot) and generally a sweeter kid.  I am turning a corner on this thing crushing me every time I think of what my innocent little angel is going through and starting to accept her as a fighter and a survivor instead of a victim of this terrible disease.  

Team G

Adam

Sunday, April 29, 2012

Over The Weekend

We had to take it easy this weekend but still had a lot of fun.

Friday was mommy's day.  Adam went to work so I had the girls for the day.  We decided we'd run a few errands (one of my favorite things to do) and headed out.   We had to plan our errands carefully because of G's low immunity so I decided we should go to the bank (drive through), gas at the station then a carwash (drive through) and last but certainly not least, the dollar store!  I had to be on super high alert for anyone with signs of a cold and everything that G touched.  Needless to say, I had my Purell bottle in hand.

Bridget's birthday is coming up and we needed a few party items.  While we were there, we wandered into the hair accessory isle and found some cute headbands.  Last week, there was a little girl in the hospital who lost all of her hair but had a headband on with a beautiful flower in it.  She looked adorable, hence my idea!  I thought it would be really fun to accessorize G's beautiful little head and attach some flowers to the headbands.  After putting Bridgy down for a nap, we warmed up the old glue gun and started crafting.  


This is what we came up with!!  G being the sweetheart she is, gave some of the girls in the neighborhood already.  I think we will bag them up and bring them to some of the little girls at the hospital!  


Saturday, was also a fun day.  Adam came back home and with the help of Bill, got to work on his motorcycle.  Its something he loves to do and I was glad he got to do it.  I worked on some cupcake toppers for Bridget's birthday as well as finished my new cupcake stand.  After some down time, a little 80's dance party with Auntie Brit and a few movies (specifically Barbie's Mermaid Tale) we walked to Auntie Mel and Uncle Ronnie's for a swim!  G got to see her friends, Makayla and Bryce who live down the street enjoying the sun on their patio.  Man, I just love our neighborhood!  We couldn't have picked a better place to live with better neighbors and are truly blessed!  





Sunday has been a relaxing day baking and watching movies with a little outdoor play.  We wanted to save up some energy for a photo shoot in the early evening for Cookies for Kids Cancer and the Mama's Night Out Event.   I'm so excited to be a part of this wonderful cause and help out these lovely ladies who have worked so hard to put this event together.  It is such a positive thing that has come about at such a difficult time...the silver lining in the dark cloud.  I always try to look for those.  
G and I baked some cupcakes to bring with us for the "bake sale".  They tasted great but started to melt as the weather was pretty warm.  Round one...taste not presentation...LOL!  
G had a fun time running around in the grass field and eventually playing with the other kids.  She was a great "model" and showed her beautiful smile.  Bridget just had fun following her big sister around!!  It is adorable to see them together exploring their world.  






  

New TEAM G bracelets are in!!!  Thanks Steph!!!  Please let me know if you would like some!  I'll bring them down to Circle of Friends Preschool!  



Friday, April 27, 2012

New Blog Addition- DONATIONS

Happy Friday Team G,

One week closer to our victory party.  Because of all of the genorosity being shown literally from all over the world ( I got an email from a couple in Toronto today ) it was decided that to make it easier for everybody we shoud add a "Donate" button on the blog.

A word about donations.  This is a bit difficult for Adam and Kris.  They have good insurance and so far this journey has not been a big financial burden.  Even so, they will have some incidental expenses.  Gas and lodging come to mind, and there may be something unforeseen.  So many people have expressed a desire to contribute, and many are not able to do the meal thing.  So after much deliberation and a bit of encouragement (pressure;-) from the rest of Team G, Adam and Kris agreed to have the paypal donate button on the blog. Any donations are welcome and much appreciated!  They will be used as needed for the extra expenses.  When Gabriella is healed and the journey comes to a close any funds left will be donated.  Some ideas they are considering are, toys for the kids at Lucille Packard and El Camino hospitals and a monetary donation to Cookies for Kids Cancer, or some other pediatric cancer organization.  This will be decided and then announced at Gabriella's victory party.  Adam, Kris, Gabriella, Bridget, and the rest of Team G thank you and are blessed by the love and generosity of friends and even strangers!  The Journey Continues!! 

Thursday, April 26, 2012

IMMUNITY and PRAYERS Around the World

This weekend G's immunity will drop...again.  It brings up so many questions in our minds...who can we be with, can she play with her friends, how much do we need to clean, is she susceptible to the fungus in the soil and will she get an infection from the spores if she plays in the dirt, should she be indoors around people, etc. etc. etc.  Its so difficult to know.  I don't want to live in a bubble but do we really want to risk a couple of days for the possibility of 30 days of isolation in the hospital?  Would it really be 30 days?  Do we want to prolong this any more than necessary?  Even if we did live in a bubble, we could still be susceptible to anything.  The doctors keep reminding us that we can't avoid everything and that 42 weeks isn't exactly black and white...as is medicine.

I just don't know.  It is still so new and we are still figuring it all out. At times like these, this is so much more of a beast than I could have imagined.  I have so many questions that no one can answer for me.  Every little sniffle, cough, or sneeze has me on guard.  I find myself constantly scanning around to see who has a runny nose and reminding myself that G has to wash her hands constantly.
All I can keep telling myself is that it could be so much worse.  At least at this point.  I don't want to think about the future too much.


Yesterday was chemo day.  We all went as a family; me, Adam, Gabriella, and Bridget.  The girls were both amazing.  I actually had fun running the girls around in the red wagon while we waited for the chemo meds.  Gabriella did so well as they accessed her port and gave her the vincristine.  Bridget had to make sure her sister was ok as she watched over the nurses.  They have such a special bond that is being reinforced every step of this process.  It's amazing to watch.
After the hospital, we went to eat lunch and came home to a tidy home (thanks mom) and a lovely meal (thanks Moto's).  G is getting better with her shots as well.  Last time I did it, she bit my finger.  Ouch!  So, Adam has been great enough to give them to her.  Each one is a totally different experience but it G seems to be getting used to it.
G playing her new Nintendo DS from Auntie Deb and Uncle Markie (my cousins). 

Bridget trying to figure out where the plug for the IV goes.  
Future resident doctor...lol!

Rolling around in the Radio Flyer!  G in her mask because of the construction at the hospital.   



On another note...
I am so grateful for all your prayers locally and around the world.

From our long time close friends, the Ow Family:
"George and I just returned from a trip to Israel with Ben, Tori, Andrew and Alexis.  We visited the Old City of Jerusalem and there is a wall called the Western Wall which is part of the original, huge Jewish synagogue that was built before Jesus lived.  It has mostly been destroyed, but there is one wall still standing and Jewish people pray at the Wall (and have for centuries!)  The tradition is that you write a prayer on a piece of paper and put the paper in a crack in the Wall.  Prayers that are put in the Wall are supposed to be answered and I want you to know that I put a prayer for Gabriella in the Wall."


From our friends and neighbors, the McDonnell's:
"Our family is friends with a very high Tibetan Lama and have known him for 6 years.  I run his organization and what makes him unique for a Buddhist teacher is that he has been recognized and he also oversees 7 Monasteries in Tibet.  I sat with him this afternoon at Starbucks and shared Gabriella’s story.  I will say prayers and I am dedicating some practice to the welfare of your child and also your family, but this teacher can offer personal prayers and because of his connections, he can have his entire Monastery pray for Gabriella where many of the world’s preeminent practitioners reside.  If you don’t mind these auspicious prayers to be done for Gabby, I would like to sponsor them and donate to Rinpoche directly and also transfer a donation to Tibet for prayers to be done at his monasteries.  I hope this is not too direct as I don’t know your religious affiliation but I have seen some amazing things over the years.  When I thought what I could do to help your family, this was the first thing that entered my mind."

Wednesday, April 25, 2012

A video for MAMA'S NIGHT OUT

Today I met some amazing women.  Amazing.
As I mentioned before, Gabriella attends Circle of Friends Preschool in Scotts Valley.  Stacey, the owner, put me in touch with one of the mom's, Michelle who is coordinating Mama's Night Out.  Along with Cara Pearson, whose family owns Pacific Cookie Company, these inspiring ladies have been involved locally with Cookies for Kids Cancer to raise funds for pediatric cancer and spread awareness in our community.

After many emails back and forth with Michelle and contact on Facebook, we finally met today.  I was asked to be a part of the video that will be played during the event, if I had a moment to steel away.  At first, I wasn't even sure I'd be able to attend the event because everything was so new.  I wasn't sure if Gabriella would be really sick or where we would be "tomorrow".  Now more than ever, I realize what an important event it is for an amazing cause.  I thought to myself, how fortunate I am to live in a community where there are people taking action.  Not only in my community, but literally right next door!

Adam has been so amazing with the girls and wants me to take a break whenever I can.  We talked about the importance of making this whole experience as positive as we could and he supported me whole heartedly in attending the event and being a part of this video.  Yesterday, I was really excited and couldn't wait to send a message out to those listening.  Not being quite sure on what to say because there is so much to share, I wrote down a few notes and thought about how this whole experience has already changed me as a person, a mom, a sister, daughter, etc.  As I do with everything, I thought I would be ok going by myself.  After my sister Bronwyn called me this morning, I realized it would be really nice to have her there with me.  Getting ready to leave the house, I started to become really anxious.  It was difficult to breathe.  How was I going to relay what I have been feeling the last couple of months, what's important to share and how the heck do I share the experience of this emotional roller coaster ride that I have been forced to take?!  The drive was difficult and more than ever, I knew how much I needed someone with me.

Trying to compose myself in the parking lot at Harbor High and make sure I knew where to go, a car drove up.  It was Michelle and Cara.  Instantly, I felt a connection with these two amazing ladies.  We talked like we were old friends and I knew that this was only the beginning.  My sister then drove up and I knew I'd be ok.  

I am just in awe of people that want to make such a big difference in the lives of so many.  We went to the filming area and met Harbor High senior Nicole along with two of her classmates as well as their teacher, Larkin. They were incredible students with an incredible teacher.  I also had the pleasure of meeting two more amazing moms, Mariah and Becky who has just come to the end of a journey with Leukemia (ALL) with her son, Evan.  We talked about how the filming was going to go and started.  As I sat and watched Cara and Michelle share their experience with children's cancer, not because their children have had the disease but simply because they were so touched by the stories of other mom's fighting this disease (Gretchen and Liam in particular), I was even more in awe and inspired.  I started to read Prince Liam the Brave's blog last night and couldn't help but fall apart in tears.  As they talked about the story and the reason they created Mama's Night Out, I was touched again and began to cry.  Becky went next.  She talked about her feelings going through it and I realized that I have been feeling many of the same things.  Emotions that you could never begin to explain.  Then it was my turn.

Before this ever happened, I didn't want much to do with pediatric cancer.  It was so far from my own world and saddened me so deeply that I just couldn't bring myself to accept that this actually happened to children.

Not ever being behind a camera before was a little nerve racking and now to be so emotionally involved, I didn't know how I was going to do it.  My sister sat with me as support and even shared her own thoughts about the situation and pediatric cancer.  It was incredibly helpful.  As I try and think of all the things I said, I can't really remember how the words came out or how I was able to get them out.   It felt amazing though and I felt empowered.  This is something that is so much bigger than all of us and to help send a message just felt wonderful.


I am again so grateful to all of you following our story and helping us however you can.
Mama's Night Out will be an amazing event and I hope you all can make it!

Here is the link, as noted above: Mama's Night Out

And an article about the success of last years event:



Monday, April 23, 2012

My Frickin' Hero

So we are sitting at dinner eating some wonderful chicken brought by a friend of ours and Gabriella gets up and walks into the kitchen.  I ask "where are you going?"  Gabriella answers, "I'm getting the ketchup out of the fridge."  I tell her the ketchup is on the dinner table and she turns around looks at us and says "well that's good, now I won't have to get so frickin' cold in the fridge!"  Kris and I just about fell out of our chairs.  We tried not to laugh but come on, some things cannot be avoided.

G had a great day.  She spent a couple of hours at her pre-school this morning.  The teachers and kids are so amazing there.  She mixed right back into the herd without hesitation and played like normal.  A couple of kids asked why her hair was so short but she just smiled and thought nothing of it and everything moved on.  Today was blood draw day and she was a champ.  I threw Kris out so she could have a break.  She has been here for everyone of the accesses.  Gabriella looked at me and said "daddy, I promise I will be still this time"  She sat next to me on the couch and did not move when the needle was put in.  I am definitely more freaked out about it than she is.  She watches it go in every time so she knows whats up but soldiers right through it. We gave her, her Neupogen shot a little later.  That shot still pisses her of but we are all getting better with it.

We live in this world of guarded happiness and constant apprehension.  When the laughter comes, it pours out of us like water.  But when the laughter is over, it's still here, the job we have been tasked with.  The battle we must win.  Thank you to all our friends and family for pulling us away for brief periods.  And to our precious children who offer so much strength and comic relief.  My frickin' hero's.

Team G


Adam

Sunday, April 22, 2012

TATTOO'S!!!!!

I was debating weather I was going to share my tattoo experience because of the stigma with tattoo's, etc, etc. but I thought, why the heck not!!  Its beautiful and its artwork!  I'm so proud of it!
I always wanted a tattoo but never knew what I wanted for life.  After having my girls, I decided I was going to set a "good example" for them and not get one.  I'm probably a little bit old school but that is how I was raised.   Now, this is something that I will cherish because of the meaning behind it.  Adam, Bridget and I are Gabriella's warriors and are going to fight for her!   I never thought before to ask people the meaning of their tattoos.  I believe everyone has a special reason behind them.  They are special to each individual.  For us, it's something that has rocked our lives and changed us forever!  Adam, Bridget, Gabriella and I will make something positive of this.

Continuing with Saturday...We all had a long day.  Adam went first and it took a while.  Uncle Ronnie and I drove around in Auntie Mel's orange Jeep to get Adam to Kevin's shop, checked in with the girls and delivered the wedding cake...not in the Jeep of course.  We got back to the shop about 3:30 and Adam's tattoo looked amazing!  He had it done right over his heart and said it hurt like heck.  Great.  I hadn't gone yet so I had no idea what it would feel like.  They were trying to explain it but until you get it done, its hard to describe.  Uncle Ronnie was up next.  Adam and I went back home to have dinner with the girls and Grandparents.  I realized that we were running short on the weekend antibiotics that G has to take to prevent a lung infection, PCP.  This is a common infection that aids patients and cancer patients get because of their immune compromised system.  To prevent it, we give her Septra friday, saturday and sunday.  I had to run to the pharmacy before they closed and jump through hoops being the weekend and all.  After about 10 different calls, I was able to get a LPCH doctor to talk with the pharmacist about 5 minutes before they closed!

Then back to Kevin's tattoo shop!  It was my turn.  I don't even know what time we started...maybe around 7:30pm.  At first it wasn't too bad.  I had some lidocaine cream on for a couple of hours and that really helped but I didn't put it on the exact right place.  The cream worked for the most part but man did it hurt!!!  Off and on hurt because there were spots where it wasn't that bad and spots where i could have jumped off the table!!  You have to be really committed to get one of those things!!
After about 2+ hours and Adam keeping me company, I was done!  It was amazing but I was so tired to really appreciate it!  I am so excited about it and am proud of it!!!!

I had Kevin, who is an amazing artist, add Bridget and a cupcake to the drawing and it turned out fantastic.  A cupcake for Bridget because ever since she was 1 and had her first cupcake, everything sweet has been "cupcake"!  She's my little cupcake!  The tiara is for both of them, being my girlie but tough girls, and the G is in the shape of a mermaid tale because Gabriella is really into mermaids and both girls love the beach/ocean.  The flower is just to represent beauty and strength.

After it was all done, our tattoo's!!!  
Trying to keep myself distracted while Kevin works. 

I put it here because we're "KICKING CANCER IN THE A**!!!!"


PROUD DADDY!!!  Looking amazing babe!
I can't tell you how special this is for me!!!

Uncle Ronnie, our adopted brother and Gabriella and Bridget's adopted uncle!!
Thanks Ronnie, we couldn't have done this without you!

I LOVE how these came out!!  It looks AMAZING!!!

Friday/Saturday

Since I didn't have time to post yesterday, I'm doing it today. And by today, I mean Sunday morning...

Yesterday (Friday) was such a roller coaster of a day.  It started off pretty rough with G waking up early (after going to sleep a little late) and feeling sick.  She didn't want anything to drink or eat and was feeling nauseated.  After chemo, she has a distinct almost toxic smell of the chemo medicines and I'm sure they are making her feel awful.  We went outside so she could get some fresh air.  I watched as she laid there while Bridget attempted to comfort her by putting blankets on her and even trying to give her the Zofran for her nausea.  It was in awe of my little Bridget being so concerned about her big sis.  Finally, after a little resting in the sun, fresh air and Zofran, G started to perk up.  She drank some coconut milk and seem to enjoy it even though she swears she didn't.

Grandma and Grandpa came over and the girls started playing around.  It was almost 10...perfect.  I raced upstairs, got my workout clothes on and raced to the gym.  It was now or never.  I had the best workout I've had in a while and it felt SOOO wonderful!!!  After a couple more errands, I went home.  We watched movies most of the day...the beautiful sunny day while before we would have been playing out in the sprinklers.  Ugg.  Time to do loads of laundry, put away things from our overnight at the hospital and try to keep the house functioning (aka. clean) while in between, cuddle with G on the couch and put Bridget down for a nap.  Before dinner, I needed a cooling off break.  I threw (not literally) G into the car and we drove about 400 yards to Auntie Mel and Uncle Ronnie's house.  G and I swam in their wonderfully warm pool and enjoyed the beautiful weather for about 30 minutes.  It was perfect.  Besides my workout, it was my favorite part of the day.  By the smile on G's face, it seemed like the best part of her day too!

When we got back, the little teeny-tiny catheter on her arm to give her Neupogen instead of a shot had gotten wet.  We thought this might help...anything to help us these days and now that we are starting the round of 3 chemo's, we need to start the Neupogen shots again.  The bandage got a little wet so I thought I'd "real quickly" change the bandage before it fell off.  Well, 1/2 an hour later, I was under the kitchen table still trying to convince her that it wouldn't hurt unless she moved.  We managed to get a new bandage on but the catheter tip came out a bit but I was able to push it back in.  Whew, that was close!  When we used it the night before, we were so excited about how "painless" it was.  Tonight, I didn't have my rock, Adam with me.  I was alone so she had to stay still.  She was very upset with me after and ran into the garage screaming.  After another half hour of her screaming, I finally lost it.  I just started to cry and tell her how sorry I was that she had to go through this.  I told her over and over how much I loved her and that I didn't want to hurt her.  I just sat on the garage floor crying.  She finally came over to me and I held her while we both cried.  At that point, she understood that this was hard on us too.  The rest of the evening was great.  I took longer to recover than G did but that's to be expected.

I also was working on a wedding cake for Saturday.  Adam and I decided through this journey that we both didn't want to wait around for G to get sick.  Life goes on and we still want to do the things that we enjoy.  Its good for us and great for the girls to see that life just can't stop.  We just have to adjust for the doctor's visits, chemo, radiation, etc. but continue with our lives as well.  So, Lindsay made the cake and buttercream's and I did my thing!  It felt really wonderful to create something beautiful again.  It was tiring but I always said to myself, "If I can be pregnant with a toddler, I can do anything" because that was hard!  Now I say, "If I can get through my little girl having cancer, I can do anything!".  I'll sleep when I'm dead!

SATURDAY...
Saturday was spent coordinating tattoos (yes, tattoos will be the next post), dropping off the wedding cake and playing with the girls of course.  Our usual busy weekend.  We have to do our best to keep an eye on G and make sure to bring her in when she needs to rest.  She was having such a great time playing with the neighbors and Lauren on her 4th birthday that it was hard to pull her away.  It was so nice to see her enjoying herself.  We actually started to make lemonade for a lemonade stand in honor of "Alex's Lemonade Stand" but the kids were interested for about 20 minutes then off to the next activity.  We will do it soon.

Adam got his tattoo first while Ronnie and I delivered the cake.  It took him about 2.5 hours and it looked amazing after!  The cake delivery was stressful as usual but it turned out beautiful!  Ronnie was next for the tattoo.  His took about the same amount of time.  After a quick bite for dinner, I was next.  Grandma and Grandpa stayed with the girls and took care of the house while we were out running around.  It was a long day to say the least but the final products were amazing!  Thanks to Kevin, our tattoo artist.

Ok, I will post more tonight about the tattoos with pictures!!!  For now, I've got to get breakfast going!

Thursday, April 19, 2012

Wednesday: Chemo Day

This morning I watched my husband in awe as he consoled Gabriella about going to the hospital.  She was not a happy camper when she woke up, slamming doors and kicking at whatever was near.  I asked Adam to deal with her because I knew I would have just gotten frustrated.  He had the patience of a saint as he talked with her about today without letting her hit, kick, etc.  It didn't take long for her to become happy again and went downstairs for her usual glass of milk and toast.

We made our way to El Camino Hospital this morning for G's 2nd of 13 admissions and her three chemo medicines.  The hospital is like a nice hotel; piano in the lobby, wonderful food, etc. and the nurses were awesome.  Dr. Marina came to visit and talk with us about how G is doing.  She is such an amazing doctor and is very supportive of the psychological aspects and family dynamics while patients are in treatment for cancer.  I am really positive and hopeful!!



Adam's Entry:


G and I are hanging out at El Camino Hospital watching Dolphin Tail and finishing dinner.  G had her second round of her "big" chemo today.  So far so good.  G was really apprehensive about going back to the doctor to get her port accessed again.  It is strange to hear a four year old ask "daddy, are they going to access my port today?".  What a different world we live in than we did about a month ago.  


We met with Gabriella's oncologist, Dr. Marina this morning.  We are so happy she is our doctor.  She answers all our questions openly and honestly.  She told us today that Gabriella is really doing well.  Her counts are recovering well and she thinks it will be a good idea to get her back to school for short periods of time to keep her happy.  She made the point that we need to keep as much happiness in her life that we can.  When you think about what has been taken from her and how much has been asked of her, we owe it to her to make life as fun and normal as possible.  


Well, it is now about 8:30pm. G did very well this evening. She rode around on her IV pole, met some new friends, and played with some dogs that came in for pet therapy.  Everything was going really well until she pounded a cup of milk and proceeded to puke all over both of us.  Boy this room smells bad now.  We gave her some Benadryl and she is sleeping well now.  Apparently the chemo drugs kicked in to wuickly to get her stomach settled with meds.  Bummer.  Hopefully all will go well this evening.  She will get some sleep and will be ready tomorrow to face another day.  One step closer to cured.  


Team G
Adam


Watching "Cats" and waiting for the chemo meds.  

G riding on her IV pole.

Eating her dinner! 

Crafts at the hospital.  Do you think she's enjoying herself? 

Monday, April 16, 2012

G Visits School!


G waiting for the craft project at school. 
Teacher Christina helping G with the iPad.  
Charolette, Zane, Julia, Seamus and Evan "posing" for the camera.

Since G's counts have been back up and its not winter, we decided to take her to school to visit with her friends.  The kids were amazing and so welcoming.  We stayed through circle time and it was great to see how the teachers interact with the kids.  G finally warmed up after a while and enjoyed being with her friends.  She got tired pretty easily, laid her head down and I knew it was time to go.  We still had some shoe shopping to do but I think that was a little much.

The rest of the day was spent relaxing with movies and waiting for the nurse to come draw more blood.  It's still difficult but I'm hoping one of these days it will get easier for her.

As I sit here again trying for 2 hours to write this update, I can't help but think about how this is all going to end.  I'm so hopeful that things will turn out well but there's always the "what if" that enters my mind.   I just can't wait to be at the other end...Gabriella to be the happy strong "CANCER FREE" princess warrior that she deserves to be.  I don't want her to have to worry about seeing doctors and nurses that are going to "hurt" her, poke her with needles, etc. and I do my best to explain that everyone is here to help her.

This week will be another round of the three chemotherapy medicines and G will have to spend Wednesday night at the hospital.  Maybe that's why I'm feeling all over the place.  It's only her second "in house treatment" but I'm a little nervous about how she will feel after.  She is stronger than I could have ever imagined and I know she will prevail!  I'm so incredibly proud of her!



G and Bridgy snuggling up in their M and M pillowcases from our neighbor Kim.







Hanging out in the sun with Uncle Brook and Auntie Alison (taking the picture) over the weekend.  


Melancholy




Another great week so far. I went back to work for a full tour last week. Work is a bit of an escape but it brings some mixed emotions. I hate leaving Kris to handle all the logistics by herself like being with G when the nurses come to draw her blood. She really is not a big fan of it and it takes quite a bit of convincing to make it happen. It is also tough leaving the girls, I spend a lot of time watching my phone, worrying, of course.

G has been enjoying the sunshine and her friends. Our first big sunny day, we overdid it a bit and I think she suffered a little that night because of it. She kept waking up saying that her bones hurt. Needless to say, we have throttled her back since then. Gabriella is a big movie fan so it does not take too much to get her to come in and hang out. It is pretty much against every thing I am about to pull my kid away from playing outside with her friends on a beautiful sunny day and sit her in front of the TV. Damn. This is going to be a long summer.

G has been getting pretty cold lately since her hair fell out. A couple days ago, G and I got up in the morning and it was cold in the house. I started the fireplace and she crawled up on the hearth and curled up under a blanket. Her sister crawled up with her, it was quite a Kodak moment. Luckily I had a camera handy.

Gabriella goes back to the hospital Wednesday for her overnight. We go to El Camino Hospital instead of Packard. They say that it is a pretty mellow place and a bit easier to deal with, especially since Packard has a bunch of construction going on. We'll see how it goes.

Thanks again to everyone for the incredible support, meals, donations etc. We couldn't do it without you.


Friday, April 13, 2012

INSPIRATION


I have been meaning to post this for a while now but time eludes me these days.  One of our babysitters and a friend of ours, Whitney, will be turning 21 next week.  Instead of having friends give her presents for her birthday, she asked us if she could have them donate to Gabriella instead.  The pure gesture of a young lady giving up her birthday gifts to help my little girl is truly inspiring!  I think Adam and I were both in awe.  I'm not even sure if I would have thought about this when turning 21!  I can't say enough about Whit and others who are helping us on this journey with gestures like this.  It's truly inspiring us to have strength and be positive.  
The party will be April 21st at 6pm at CrossFit Diablo in Pleasant Hill.  Yes, the support from our CrossFit family has been astonishing.   



Gabriella has been attending an incredible school called Circle of Friends in Scotts Valley.  Since her diagnosis, she hasn't been able to attend much due to hospital visits, her immunity, etc.  Stacey, the owner was the one who brought her adorable friends dressed in pink and tiaras to the Aquarium.  
As you walk into the school, there is an area right in front dedicated to Gabbi.  Gifts, donations, notes, etc...from her friends and the parents at COF.  We are so appreciative.  I hope that she will be friends with these girls forever.  I can't wait for her to go back and visit her friends and teachers at school!  I just love her being there! 


This was the basket for Gabriella and Bridget from the hair fairy and Team G.  They were both so excited about all the little gifts!  (The wine is for me ;-)).  Ok, maybe I'll share it with Adam...lol!




There are many moments where I feel down, frustrated, overwhelmed.  Gabriella never asked for this illness.  Why does she have to go through this.  Why did we get chosen?  Maybe I'll be able to answer that question one of these days.  For now, I have been inspired by both my girls, Gabriella and Bridget. I've been inspired by the strength of my husband, Adam and his ability to be so positive.  I'm also inspired by our family, friends and "adopted" family.  All I have to do is look at emails I've saved, go to my Facebook page or just look around my community.  You are all there encouraging us.  It brings tears to my eyes. 



Thursday, April 12, 2012

ELLIE....IS OUR DOGS NAME :-))

Hair Today, Gone Tomorrow

Today was a great day.  Adam and the girls played outside today during the break in the storm.  I got a great Crossfit workout in and ran a ton of errands.  The nurse came by to draw G's blood.  She did great but complained that it hurt a little more.  Not sure if it was sore from yesterday or if the cream wasn't on long enough.  There are so many variables so we'll see again what happens on Monday.  Since the doctor hasn't called yet, the results are good.  No news is good news for the most part!

I don't want to be stuck on the hair thing but its been a big reality check throughout this whole situation.  G's hair has been falling out quickly.  She has been loosing it from the top mostly but today, I started brushing it out and collecting it for the hair fairy.  It just kept coming out and she said, "Mommy, it feels good when you pull my hair out"!  How funny is that!  She started pulling chunks out (much more than I got) and just laughed!  We even got Bridget in on the action to add to G's hair pile.  G was laughing and smiling the whole time, going back and forth from the mirror to the pile of hair on the floor.  We were just laughing the whole time.  I just told her how beautiful her head was and how pretty her eyes were.  She's just a happy go lucky kid and I'm loving every minute of her strength and bravery!  I'm actually just glad that this part is done.  It's gone now (except for a few sprigs) and I love it!  We can move on from this stage and have fun with her accessories, if she likes.    The hair fairy, Uncle Ronnie and Auntie Mel and part of Team G will be leaving her and Bridget a fun package tonight.  So, if you see G, just tell her how beautiful her hair is and how much her eyes stand out!  

 G with her beautiful smile and a sticker on her head.  The little bump is her port.  

 Bridget and G fitting in the pajama drawer.  




This weekend will be more of the same, enjoying ourselves and having fun!  

Hi guys, this is Adam.  G was jumping on the treadmill this afternoon.  I'm not too sure where she got it from but she started a little chant.  I ran in and got my phone to video it. 

Hopefully the link works.  It just reminded myself how she listens to everything we say and I strongly believe that a great deal of her strength comes from the support of Team G.  I know much of my strength does.
video


Team G

Adam


Another Treatment in the Books

This has only been the third time they've accessed G's port and she is getting sooo much better at it.  We placed the lidocaine cream on before we left the house and made our way up to LPCH.  I was hopping it wouldn't take very long because it was such a short visit.  While we were waiting to go back to the infusion clinic, we got to talk and read books together.  Once they placed us in the area, the real fun began...we brought out the tea set from Auntie Una and had a tea party.  Gabriella even invited a couple of the doctors to have tea with us.  They both kindly accepted.  One of the doctors was wearing G's favorite color shirt...purple.  They have continued to impress us with their kindness and commitment to the children.
Gabriella's doctors again had great news by telling us they were hopeful and that she's doing great.  She's lost a pound but her appetite hasn't been that much different than before this all started.  It was just the days following her 1st hospital stay that were significant for a decrease in her appetite.  
Once we accessed her port, it took about a minute to get the meds in and then we were done.  
Back home we go after some food at CPK, coffee and a cake pop!  

G feel asleep on the way to Nana's and slept for over 2 hours.  Bridget was so worried seeing sis worn out and tried patting her on the arm and putting a blanket over her.  It really melted my heart.  She still went back to sleep at about 9pm.  She was tired!

             
G having her blood pressure taken in picture 1.                          
Having a tea party while we wait in picture 2.

I believe this is the 3rd week of our 42 week protocol.  We go in  for weekly visits to get G's vincristine.  Every 3rd week, we stay overnight at the hospital.  We calculated this to be 13 admissions, as long as things go well which seems to be the case so far.  Radiation will start around June 13th and last for 5 1/2 weeks.  We will still be in the hospital as scheduled for chemo during radiation.  

G's hair is continuing to fall out in mass.  There's a lot coming from the top of her head but its just all over the place.  I just don't know if I should cut it all off now or let it come out on its own.  We've told her its all going to come out and we'll let her decide if she wants to cut it all off at once.   Its just everywhere and we're constantly picking it off.  Actually, she doesn't seem to mind because were leaving it at the front door for the hair fairy who leaves a small toy.  What kid wouldn't want that?  She asked me, "Mommy, where does the hair fairy take the hair?"  And I told her it went to other little kids who might need it.  

Next duty, check her blood again tomorrow.  She says "Mommy, I'm going to sit this still" as she sits like a statue on the floor.  Its going to be rough again once we have to start the next round of shots after the next overnight but I'm so glad she is getting used to accessing her port. 

Goodnight Team G


Wednesday, April 11, 2012

Raindrops Keep Falling on my Head...

That was our song for the day....dancing around on the beach and in the car.

We had a great day with some of our good friends, Uncle Johnny and Auntie Una (yes, we have adopted a lot of uncles and aunties and we love them all).  The girls were so excited to see them in the morning!  We had coffee, breakfast and Auntie Una had a tea party with the girls.  After lunch, we headed over to Seascape Resort, where they were staying, and took a golf cart down to the beach.  The girls had a blast getting rained on, making sand boats, and hiding their feet in the sand.  After getting wet on the beach, it was time for a quick dip in the jacuzzi then off to Palapas for dinner and margaritas.  I saw my Kewwie at dinner too and it was so nice to see her.  

My Bridgy....
You lookin' at me??
Auntie Una having tea with the girls from their new tea set from Auntie Una.

 My sassy, photogenic little G.  Having a blast on the beach getting her feet buried by Uncle Johnny.
She's got no cares in the world.

Its funny how "difficult" it was just a few months ago to pack the kids up and take them to the beach.  Now, that part in life is easy and fun.  These are the times we will always remember.  I almost feel like we're on vacation until I look at my little girls dark circles under her eyes and see strands of hair falling off her head.  Its still a vacation, but one that's much closer to home and much shorter.

Tomorrow should be a shorter visit at the hospital.  They will just need to access her port and give her one of the chemo medicines.  Really, how long can that be?  I'm going to see if they could use paper tape and maybe that would come off nicer.  The tape is just to sticky and she hates it.  I wouldn't like it either.

As the outpour of support is still coming in for our family, we are still speechless!  I told Adam, maybe we should go see a movie since we're getting all these movie cards!  Thank you again!

Goodnight Team G!

Monday, April 9, 2012

A Little Victory!!

Hi All,

We just got great news from the doctor.  Gabriella's immunity has gone back up and we can stop giving her a shot for 12 days!!  Adam and I are so happy for this news.  Giving her a shot was just a dreaded task we had to do every night for the last 12 days.  We started at night and finally decided it wasn't working for any of us.  It just felt to horrible to "sneak" on her like that.  We did it the last two nights and it really hurt her going in.  She actually was fine with the needle but the medicine would sting her as it went in.  So, this is such a little blessing.  Her body is amazing and she is such a little fighter!!
My little Bridget is just as amazing.  She has trouble seeing her sister (oops...forgot to finish earlier) upset and crying.  Its hard to explain to her but I just tell her "sissy" is ok.  Many times she will go up to G and pat her on the arm, give her a hug or frown at whoever is making her sister cry at the moment.  I'm so proud of her.  She will be a cancer in a different way than her sister but just as strong and brave.  This is something that will bond them together for the rest of their lives.

We had a great Easter.  It was low key but Bridget and I went to church with my parents and sister's family.  We went to the Crape Place after and enjoyed a nice lunch in the sun.  The weather was perfect.  Gabriella and Adam stayed at home and enjoyed the sunshine.  We had to be careful this weekend because of her low immunity but I think we jumped this hurdle for the moment.  It will be great if this is the routine because then we can plan a little more.  If you all know me, I am a planner and its difficult to not be able to plan.

The process of G's hair falling out started last night.  Adam and I were giving the girls a bath and a few good pieces came out.  Its heartbreaking, probably more for us, but we just have to keep remembering this process is working and the meds are doing their job.  In the long run, temporary hair loss doesn't really mean much.  To Gabriella, it will only be what we make of it...so we're gonna make it fun!

Its been a rough weekend because I am struggling in my mind.  I'm just doing my best to stay positive about this whole situation but its difficult.  Its the most difficult thing I've ever done.  Its like running the longest marathon in the world.  You know you can finish but its gonna take hard work.   In the end, it will be victorious!

The girls getting into wearing some warm hats for the cold mornings!  

Bridget found her buddy (and cousin) Iskandria.  

Nana and G doing some snuggle time.  

This was last week with the Winter's girls and all the stuffed     animals.  A little heaven!

I hope by writing this blog, we can make a difference in everyone's life and inspire everyone to make a difference.  So many of you have already made a huge difference in our lives and we can't tell you how much we appreciate it.
Take on the challenges.  Don't ever think you can't do something or can't accomplish your goals because you can!!  It has made us prioritize everything in our lives!  Cherish the good and find the silver lining in the bad.  And...hug your children every minute you can!!  They are amazing little people!!

Saturday, April 7, 2012

Saturday night

It's about 7:00 pm Saturday evening. We just gave G her first Nupagen shot while she was awake. Boy that was a hoot. We tried to be quick and prepared so she did not have to worry about it for any length of time. I don't think there is any way we are going to make that easy. She panicked before we gave it and was furious when it was over. I can't say I blame her. To get dive bombed right in the middle of a Care Bears movie just sucks. She really does not understand why this is happening which makes it that much more cruel. At least Kris and I know why this needs to be done and can take solace in that. God I hate cancer.

I wanted to mention something that I have been thinking about lately, I have had many people break down and get emotional when we are speaking about G. It seems that people feel uncomfortable when this happens, please understand, it is not at all uncomfortable for me. When my friends show true emotions, I appreciate it. Trust me, no one is going to do anything I haven't already done. My tears have been shed and if it is your time, let them flow.

G has had a couple of great days. She is sleeping pretty well and the beautiful weather we are having has had us outside playing with our fantastic neighbors. Kris and I are trying to throttle her back a little to keep her from overdoing it. We got the results from thursdays blood draw and her ANC levels dropped as expected.
http://en.wikipedia.org/wiki/Absolute_neutrophil_count
As I understand it, this means her ability to fight off infections is very low right now. So tomorrow will be just some outside easter egg hunting at the house and probably eating too much candy with dear old dad. Happy Easter to everyone out there.

Team G
Decorating Easter Cupcakes!

Adam

Friday, April 6, 2012

Coordination- TAKING THEM A MEAL

You guys are amazing. The amount of calls and emails offering to bring the Cosner's dinner is staggering. Although we love getting to know each and every one of you, we sometimes get nervous that we will forget to return a call. So what we did was create a meal schedule on

This website will allow you to log in and view the meal schedule then you can choose a day that works for you. Once you schedule yourself you can write a note about what you are bringing so everybody can see the menu and be a part of the planning. If you are not familiar with the "Paleo" diet, there are a couple links to "Paleo" diet websites with recipes that you can choose from.

To log in, once you are on the website enter their last name and the password (their dogs name). Once this is done you can view the schedule and sign up to bring them a meal.

Team G

A JOURNAL FOR THE GIRLS

Forgot to mention earlier that I'll be printing this blog for the girls to read when they are older so comment away!!!  It will be something they can read later on and realize where all the wonderful support is coming from!!

Daddy and the girls sporting some hew hats on a cold day!

Thursday

What can I say, besides that I will probably rewrite this post 10 times before actually posting it ;-)
Ok, I actually started writing this last night....

Gabriella is doing awesome.  She had a rough night last night and good old daddy was there for her.  Its kind of a pattern we established a long time ago...mommy needed to sleep and daddy got up with them at night.  Adam and I are definitely a great team.  I said to Adam that he's just making up for all the years of me being pregnant and breastfeeding them at night.  Gabriella knows daddy is the nicer guy at night and she prefers to go to him anyway.  I'm kinda grouchy.  

We had to wake her a bit earlier than normal because the nurses were coming to draw blood from her already accessed port and take the "string" out.  After a rough night, that wasn't fun.   We left it accessed yesterday so they could draw blood today and not have to poke her again.   I'm sure she will get used to it and become a pro but I'm sure we'll do these things 20 times before we figure out the best way to do it.   I don't know....I think taking the tape off is the most traumatic part!  She hates it! She did great with the blood being drawn but was not happy about the tape.  She was tired too and with chemo yesterday, I'm sure just wiped out.  I've noticed the dark circles under her eyes.  Looking at the blood work, I've also noticed a drop in her hemoglobin and platelets.  The hemoglobin carries oxygen to her body and if you don't have enough...its like being anemic.  The platelets help her blood clot.  They are still at normal but not as high as previously.  Her white blood cell count is normal but the doctors expect a decrease this weekend.

It was really cute to see the concerned look on Bridget's face after the nurses left.  She came over with a frown on her face and patted G on the belly.  Once I told her it was ok, she gave G a hug and it seemed to comfort both of them.  Made my heart melt.

G and Bridget spent the morning (after the nurses left the house) relaxing, drinking milk and playing.  Daddy got to work out and, after wandering around in circles, cleaning the fridge and pantry 10 times, and figuring out what my priorities were, I took Ellie and went for a run.  Its wonderful to just blast my music and run.

Adam and I had a great hour just checking in with each other (and our counselor) about the best way to deal with this.  It's always nice to hear how he is feeling about all of it.  He is my rock when I need it and I am his.  We won't always agree on things but as long as we stay focused, we will get through it with flying colors.  If we were chosen to do this, you better believe we will take it on!  Adam and I have always tried to take the most challenging paths in life.  I think that is what attracted me to him.  Life was (and is) an adventure.  This is more of an adventure than I ever wanted but it is our mission.

Go TEAM G!









Wednesday, April 4, 2012

We're back!

We made it through another day and once again my little girl was my strength through a trying day. Gabriella was on to us this morning when we put the numbing cream on her port. The cream goes on about an hour before they "access" it. They use the term "access" to describe plunging a large needle through her chest into the port. It did not really bother G but I nearly passed out when they did it. G got pretty scared when two nurses came in to do the access. I held her on my lap and the nurses were very quick and efficient which made it much easier for both of us. Gabriella was nervous but as soon as it was over I think she was surprised at how little it hurt and it will probably only affect me in the future. I don't think Kris is going to let me go to the hospital any more if I can't stop being such a baby. Gabriella is home and very happy. She is watching Mickey Mouse and acting like nothing happened. She will do this every wednesday for the next 40 weeks. The doctors were pleased to see how good she looked and at how well she is eating and of course pooping (again with the pooping?) They will draw more blood tomorrow to get more information on how well here liver is handling the chemo drugs.
Once again thanks for all the wonderful support and prayers and well wishes. We could not do it without all of your behind us. We feel you every step of the way.

Team G

Adam

Week 2

It is Wednesday morning, Gabriella has her second round of chemo today. Kristin and I are both apprehensive as always about new procedures. Honestly I think that Gabriella will handle all of this much better than we will. Her port will be accessed today at LPCH, they will draw blood, test it, and then give her chemo. We have the option of having a home care nurse come to the house Mondays and draw the blood but right now we think the least amount of times the port is accessed the better. Gabriella spent the day yesterday playing with her neighborhood friends without a care in the world. She has become so comfortable with her port that she was trying to get the neighbor kids to feel the bump. They wholehearted refused. She is eating well and very happy right now. All of the prayers and well wishes are paying off and we truly believe that.

Team G

Adam

Tuesday, April 3, 2012

The Hair Fairy

Last night, we got a visit from the hair fairy.  Before bedtime, Bridget, Gabriella and I placed my hair on the matt at the front door.  I told G that the hair fairy was coming to get my hair and leave something in return.  She loved the idea so I found a bag of popcorn and a couple of books to leave from the hair fairy. This morning, she was so excited about the gifts we received.  I asked her if she wanted to leave some hair for the fairy tonight and she was excited about it.  I was able to cut about 3 inches off (its been a while since I've cut it) in anticipation of her loosing it in about 2 weeks.  She even got the ok from Bridget to cut a little bit of her hair and place it in the bag as well.
It was hard to cut her hair but I just had to do it.  I'm sure it will be harder when it starts to fall out.  Not that it will be hard for her but hard as a parent to accept the changes that are happening.  I think seeing a child with no hair is a tell tale sign that the child is going through chemo treatments and its a serious reality check.  But, I also know that it is a sign that the medication is working and killing the cancer.

G seemed to be getting her appetite back as well.  She was able to eat more food; hot dog, some rice, meat, strawberries and of course her milk.  We would tease her and call her a "milk-a-holic" because she would always drink multiple cups of milk a day.  She just laughs.
She was in very good spirits today and danced with Bridget on the bed tonight to my 80's music...lol!  Adam wasn't home of course or I'm sure we'd be listening to something else ;-).  They had a great time until Bridget fell off the bed...party over and time to sleep.

I was able to get to the gym and got a lot of great compliments about my hair!!  Thanks guys and gals!  It made my day.  I just love our Crossfit gym and our Crossfit community.  The amount of support coming from the gym alone is amazing.  I just can't say enough about the support from our family and friends as well.  We will keep telling you all how much it helps and how much we appreciate it even if it gets old to hear!!


Being a nurse, I find it reassuring that the things we do for our patients, we are doing to help them.  Even though at the time it might hurt or be very uncomfortable, we know that there is a reason for the temporary discomfort.  I am trying so hard to remember this as we go through these procedures, needle sticks, etc. that by doing these things, we are helping Gabriella survive.   We have been giving her Neupogen injections at night to help stimulate her white blood cell count since the chemo will decrease her immunity.  After she goes to sleep, we put lidocaine on an arm or leg to help numb the area.  Then we go back in to give her the shot.  Even though she still feels it, I think that the anxiety of giving her a shot when she is awake would just be too much at this point.  It is just horrible to have to cause pain to your child and both Adam and I just dread it.  I wonder if she will remember, if the cream is actually working, if she's going to have major trust issues with us later on...etc. etc.  I think about the children who have diabetes and who's parents have to go through these shots multiple times a day.  I don't know what is worse.  But I know we do it because we care about our children's health.  We do it because we have to.  There is no other option except to cure her.

Kristin