Saturday, March 31, 2012

OH LOVELY LOCKS!!

I DID IT!!!

Today the first line of duty was to trim those locks for my girl.  I have to admit, I was a little hesitant but  this is just something I could do for my G.  I just happen to have been growing my hair out for no particular reason.  Now I can give something to my little girl, whether she wears it or not, it doesn't matter to me.  Its probably not enough for a whole wig but they can add to it and it will still be special.  
  I wasn't sure if I was going to cry when Rezo (at Luscious and Duke) cut it and when I was telling G's story.  It just felt good.  And I had enough left to style!  He gave me some highlights and it felt great.    It was really freeing and will be easier to maintain.  Gabriella said that she really liked my hair and I just needed a purple dress to look like Rapunzel (at the end of her movie of course).  I think I'll go buy a purple dress tomorrow ;-)  
  Time to accessorize and send that hair off for a wig!



We had some great friends come to visit us tonight.  The boys (Jack and Dash) had a great time playing with Gabriella's Leapfrog.  We played outside when the rain stopped and G really enjoyed it.  She hasn't been eating much but has been getting better at taking her antibiotics.  I had to slip some anti-nausea meds with her abx and it seemed to help.  She had pirate booty, orange juice and a couple chicken meatballs.  Success.  
Its amazing how much life has changed just with what she is eating.  We always tried to keep the girls eating healthy and now we just want her to eat anything!  Cookies, cake, ice cream...none of it has been that appealing for her these days but I'm sure it will come in waves.  




Again, we are extremely grateful for the gifts, cards, dinners, etc that everyone is sending our way.  Adam and I are just blown away by the support and the words of encouragement that you've all given us.  It makes this journey a little more tolerable.  
My mom always told me, "When life gives you lemons, make lemonade".  Well, these lemons are VERY tart but mom, I will make lemonade!

Kristin

Friday, March 30, 2012

Home Sweet Home

Ahhh, what can I say.  It is beautiful to be home.  Just beautiful.  My mom came over and made the house so comfortable to come home to; a clean kitchen, clean floors, soft lighting and flowers.  She knows that makes me happy. Again, we came home to wonderful gifts and letters of support from our friends.  You guys will probably get tired of me trying to thank everyone.  We also had an awesome dinner from Darriell and Shawn, which was so perfect because I was starving!  Grandma and Grandpa helped all day at the hospital with Bridget and she even got a nap in the car.
We also came home with a ton of paperwork, meds and supplies to organize.  It's quite overwhelming and I feel like I'm in school again but that's ok.  I loved school ;-). I am just happy that we have a plan being put into place.

G had a little nap in the car and didn't feel like eating much.  She has always been a big milk drinker and at least wanted her milk tonight.  After much convincing and a little demanding, G took a light sponge bath.  I was hoping it would make her feel better and it did.  I saw the sparkle in her eye and heard her precious giggle as she "cleaned" the bath with her chlorhedidine scrubbers.  We got all the knots out of her hair and scrubbed the adhesive off.  After a few books and a little down time, she was able to fall asleep.

This weekend, we're going to relax and try to get a routine down.  We learned a ton of information these last few weeks and I've got to organize it, absorb it.  Its going to be hard but we HAVE to be so cautious about anyone with a cough, sneeze or any cold symptoms.  We absolutely love having our friends over but have to be vigilant about "screening" any colds.  Thanks for understanding.

Honestly, yesterday I didn't know if I had the strength to get through this.  Its been difficult to breathe and difficult to know the difference between what is reality and what is not.  As we walked through the doors of the "Bass Cancer Center" for the first time on March 16th, I could hardly compose myself.  Adam and I both had to step out, breathe and wonder, "How the hell did we get here?".  It was almost impossible to bare.  This has been the most difficult, heart wrenching, and emotional time in our lives.  As Adam and I gain more knowledge about fighting this disease, we both feel so much courage and strength to get through this.

Go Team G!!!





Thursday, March 29, 2012

Home Again!!

AND NO SPREAD OF THE CANCER IN G'S BONE MARROW!  This was confirmed today.

I just love to post good news!
Yesterday was a tough day.  Adam and I switched off staying the night and last night was my night.  It sounded better than the previous night with Adam.  They were able to start all three chemo drugs and I feel so much better about killing this cancer.  I was very anxious yesterday just waiting for G to poop, as Adam posted.  I just felt horrible knowing that this cancer was growing inside her and she hadn't yet had the medicine to start the process.  We tried a few tricks but finally she went and the nurses all cheered.  Funny, the little things that make us happy.

G did great with the chemo but is a little tired and worn out today.  She doesn't have much of an appetite today but we made her drink fluid so we could get home.  This was our criteria for getting to go home today.  Now, I feel better knowing that these medicines will help cure her.

Ok, we're packing up and getting outta here!

Kristin
Bridget enjoying the outside terrace of the hospital and snacking on cereal. 

Wednesday, March 28, 2012

One down, 13 to go.

I just spoke to Kris on the phone. G moved her bowels finally and they were able to give her the final chemo med this evening. In case you have questions about that. The medication can cause constipation in some kids so they will not give it unless they have a confirmed stool in the last 48 hours. I have never hoped more for poop. Kris said that G is doing very well, she is eating and watching snow dogs, hard to believe that she got tired of Tangled after only 43 run throughs. I came home this afternoon to be with Bridget and it was wonderful to play with her. We laughed and jumped on the trampoline. She seems to be coping just fine but I am sure she will be glad to see her big sis tomorrow. As will I.

Team G

Adam

Waiting game



"Waiting for G's bowels to get going so we can get her chemotherapy started. She's playing princess dress-up with Nana".

A tough one.

Today started tough and it just keeps going. G was unable to eat anything after midnight last night and was not happy to be denied her toast and milk yesterday morning. We arrived at LPCH at the designated time of 10:00 and met with Dr. Marina. The meeting went well and she had us sign more papers and discussed what was going to transpire over the next few days. G's port would be placed and while she was under general anesthesia they would do bone marrow aspirates. The surgery center was running late due to "emergencies" and G remained NPO for an extra 3 hours which I was not happy about at all. When she was done with her surgery she woke up agitated again and they were slow to get an X-ray machine in to check the placement of her port so we got to fight her to get that done. Once the X-ray was taken we were given the delightful news that there were no more single rooms so we are currently shoe horned into a corner of another room with another family. It is now about 5:00 am and our neighbors chemo machine has alarmed about every 15 minutes since about 3 am. Thankfully G has slept through most of the alarms. In a line of dark days, this one has pushed the envelope of rediculous. I feel like I have had to fight with every person in this hospital today to get appropriate care for my kid. When Gabriella was born we were scheduled to go a very nice maternity ward in Santa Cruz but when Kris started having contractions, the place was full and we defaulted to an old and uncomfortable spot in Dominican Hospital. We fought for her then and we will fight for her now. I'm sure in a few days this will all be a distant memory but for now, God I could use some sleep.

Team G
Adam


Tuesday, March 27, 2012

Out of Surgery and Recovering

G is resting like an angel. She's in post-op and were waiting for her to wake up. She has her port in and the bone marrow biopsy is done. We'll be heading to a room soon. It's just comforting to hear her heart beat (from the monitor).

Getting a port

Its 4:04pm and Gabriella is finally getting her port.  She also had a bone marrow biopsy and the doctor said it went well.  She doesn't expect to find anything but we needed to rule it out.  It's been a long morning, longer for all of us than for G.  She had a great time playing with Nana, Bridget and Auntie B.

She is such a trooper going all day long with only juice at 9:45am.  It was hard for us to eat because she wasn't eating.  There was some delay with the surgery because they had an emergency situation with the first case and this pushed everyone back a few hours...uggg!  What can you do?  It sucks because we are only in control of so much. Yet we are hopeful that we are in good hands and will be taken care of.

There is so much I want to write here but I just don't know where to start.  Yesterday was a good day.  We got some great news which Adam posted.  We were both very optimistic about the treatment and expected outcomes.   We are worried about saving her life and they were discussing saving her ovaries! We took this as a very good sign of course.  Adam and I just want to see our baby girl graduate from high school, college and make a difference in people's lives.  It will be a hell of a road to get there but damn it...we will do it!!

 I was so happy coming home that I went for a run (Ellie needed it too) and hollered as I ran down the street.  I'm sure people thought I was crazy but it felt good.  Electra and Steve came by with a yummy dinner.  Uncle Ronnie and Auntie Mel came by and the kids had a blast!  At some point, we will establish our normal routines and get back on track.  For now, we are enjoying...just enjoying the moments we can.

As for the wig, I have been gathering information.  G will probably loose her hair in about 2-3 weeks. The wig will take about 6-8 weeks.  I don't think just my hair will be enough, so if anyone wants to donate some hair, I'll find a way to attach the website.  They say the minimum is 8-10 inches, 12-14 is better but it doesn't matter to me.  It's just something I can give to her.  Some have asked me if they can donate to get a wig.  We are looking into having insurance cover it so that's to be determined.  Adam and I as well as the rest of our family continue to be amazed by all of your generosity and kindness.  We are deeply touched.  I would like to thank each and every one of you personally and find a way to repay you all for everything!  Good will come of this.  As for now, just waiting to hold my little girl. Both of them actually.

 Trying to entertain our girl and laugh as we wait for surgery. 
- Kristin

BRACELETS-Team G Schwag

Cliff and Electra modeling the new TEAM G bracelets. They are available at CrossFit West for a donation of any size.

Thank you to Sam and Cliff at CrossFit west for making this happen.








There have been a few questions about getting bracelets shipped out of the area. If you are out of the area and would lke a bracelet you will need do the following:

1) Get a "Priority Mail Window Flat Rate" envelope from the post office and address it to yourself.

2) Place the Self Addressed flat rate envelope along with your donation in another envelope and mail to:

CrossFit West, 360 Coral St, suite F, Santa Cruz, CA 95060 (Attn: Team G)

Thanks to everybody for supporting Team G

Monday, March 26, 2012

Sunday Awesome Sunday

Mommy and Bridgy playing with Penguins












Apparently slides are AWESOME












Reflecting on a great day.














I think she was taking a look over at the slide and planning her attack.












Circle of friends princesses.

Another good day

We are just returning from another consult with the folks at Lucille Packard. Today we met with Dr. Donaldson, the Radiation Oncologist. As has been the case with all of the physicians who are treating Gabriella, she was a kind, intelligent, candid and caring person. She reviewed the results of the PET scan with us. More good news! Nothing showed up that we haven't seen in other scans. Every one of these scans adds a great deal of anxiety and worry that they will find something that the last one did not. It appears that the Rabdomyosarcoma is still there.(bummer) and the lymph node on the right side of her abdomen is involved, which we knew. The location and type of rabdo tumor puts her in a low risk category. That alone would be a fairly straight forward protocol but the inclusion of the lymph node adds a bit of complexity. For this reason she will be going through 42 weeks instead of 22 weeks of chemotherapy. She will also at 12 weeks, begin 5 1/2 weeks of daily radiation treatments. This will be to completely remove the cancer cells from the affected area. It's going to be a long haul but the party at the end of it will make it all worth while.

I continue to be astounded by the kindness and generosity of our friends and family. The trip we made to the aquarium yesterday was unreal. I called the aquarium Friday afternoon and spoke to the director of tours. I told her the situation, the woman on the other end was very nice and said normally they need more time to organize something especially on a weekend but she would do her best. We got to the tour counter yesterday morning and they were ready for us. We ended up having more people than I had initially thought and they rounded up a second tour guide to take half of the group. They took us on back stage views of the sea turtles (on the roof) and jellyfish. When the tour was over, they had an incredible gift bag for Gabriella with a giant sea turtle and other stuffed animals and books. It was so kind and generous I could not have asked for more. After a full day of playing with her friends, Gabriella came home to some wonderfully generous gifts that were left on the doorstep.

This has already been one of the most trying times of our lives. Bill wrote about courage in a note to Kris, I used to think that I knew what courage was about. Let me tell you, I had no idea. This song lyric keeps running through my head. "I'm not a coward, I've just never been tested, I'd like to think if I was I would pass." Well, here comes the test. God I hope I pass.

Team G

Adam

Kindness

"That may be the most humble, courageous thing I've ever read. THAT is exactly what wonder, courage and strength look like! Courage feels like exhaustion, and getting out of bed anyway. Courage feels like fear, terror, anger, sadness... and smiling at, and laughing with, your beautiful daughters... at the very same time. Courage feels like you just don't have any idea how to do this and you do it anyway. If you want to know what courage looks like, look over at Adam. Then get up walk over to the mirror and look in it. THAT is what courage looks like! These things your friends are saying aren't casual compliments. They are accurate observations. Just the facts ma'am. " Billiam


I just had to repost this because I want to remember it every morning when I wake up and every time I don't feel strength anymore.  Its true, I don't have any idea how to do this but I'm doing it anyway.  Just putting one foot in front of the other because its the only thing I can do.  


The Aquarium today was AMAZING!  Gabriella has never had so much fun there and was so excited to see all of her friends!  Stacey and her mom (brave souls) piled in 6 little "princesses" into her car and brought them to the aquarium.  Jenni, Charolette, Elly, Shelby, Taylor, Julia and Makayla (G's friends from Circle of Friends Preschool).  The McDonnell's came, our neighbors the Ohlsson's came, Uncle Ronnie, Auntie Mel, my brother and family, Nana and Iskandria, the Rankins, the Vanderende's, the Lucero's, the Wards...am I forgetting anyone? We got a special tour and got to go behind the scenes to see the big turtles and the jellyfish exhibit.  


When we got home, we were greeted to a wonderfully clean house by my Martha, a dinner from the Smiths along with some awesome t-shirts ;-), and bags of gifts at the front door for the girls, some of which had no cards!  Blankets with each of our girls names on them and a travel suitcase from Gina and family. Both Adam and I are truly blown away by people's kindness and desire to help.  Thank you all for remembering Bridget too.  The girls are thinking its their birthday every day. 


I want you all to know and remember, to please take care of YOU first, your family and please don't apologize if you can't make it by or whatever...Do you remember always getting instructions in the plane about putting your oxygen on first before you put your child's on?  You can't take care of anything unless you take care of yourself so put your oxygen on FIRST!  We know people have busy lives and your own children of course.  I don't want that to change.  Adam and I, again are amazed by the graciousness that you have all shown and the willingness to be there for us.  This has truly restored our belief in the goodness and kindness of people.  


Tomorrow, we'll meet with the Radiologist and find out even more information.  For now, got to sleep. 


All my thanks,
Kristin



Sunday, March 25, 2012

Aquarium Today

We,re planning to leave about 10 and be at the aquarium about 11. We'll probably just go to the front. They have a tour planned for us at 11:30 at Guest Services. Just watch for us. You'll find us :-)
I've gotten a lot of good resources for the wig so thanks guys.  I'm definitely going to follow up on that.  I do have to admit that some moments I'm so happy about doing it and sometimes its scares the crap out of me.  I don't know why. its only hair and it grows back.  There is just so much more behind it.  Funny thing is, we've been watching Rapunzel these last few days.  Serendipitous really.

We had some great moments today and some down moments.  That is what they really are... just moments of pure emotion.  We had some great friends come, Steph, Tobey and Addison Jenkins, to bring us coffee.  The girls got to play together and had a great time.
We also had more great friends Cliff and Morgan bring us dinner.  I was so tired when they got here but it was just really nice to have some "normalcy" for the moment and for the evening.  My sister Auntie B surprised us with a visit as well and she pitched right in to clean the dishes.  Another bag came from the Crowley's to the door filled with popcorn, movies, candy bars, and stuffed animals.
I always tried to believe that mankind is good.  I've have a whole new admiration for mankind in the last few weeks.  A lot had to do with the fact that I can finally possibly accept it now.  

I'm reading some of the posts telling us that we are wonderful, courageous, strong parents....thank you for the compliments.  But I don't feel like I am these things really.  I'm just a mom trying to get my little girl through this...get my whole family through this.  Its a curse to see my angelic little girl just trying to grow up and now she has to deal with this ugliness growing inside her.  I saw a piece of the tumor coming out tonight.  I just wanted to grab it out of her and burn it!!  It made me sick to my stomach.  But my saving grace is that it just doesn't bother her.  I think Gabriella is the one that's wonderful, courageous, strong and brave and I know all of you think so too.
Unfortunately, we were the ones chosen for this journey.

Saturday, March 24, 2012

MAKING A WIG

Hi All, Does anyone know how I can donate my own hair to make a wig for Gabriella? I'd like for her to have a wig of her mommy's hair. I've looked into Locks of Love and it looks like it's a general donation. Just wanted to see if anyone out there knows how to do this OR can make a wig?!?!? Thank you, Kristin

Friday, March 23, 2012

Another Day

For the moment, things are "normal".  What the heck does that mean?  It has been what we have known for the last few years, months, days.
Today was another day; rough, exhausting, draining, etc. but in the end, I got to hold my daughter tight and nothing else mattered.  I was in heaven and from here on out, every time I hold my girls, I will be in HEAVEN.
We went to the hospital today around 1pm.  G couldn't eat or drink anything.  The basic fundamentals of being a parent and of life is to eat, drink, breathe... How odd is it to not give your child a drink of water when they are thirsty or to give them food when they are hungry.  As Adam said earlier, this rocks the very core of our existence and there is not a damn thing we can do about it!  I want to scream, cuss, cry....all at the same time!  Every emotion I have ever felt I'm now feeling ten trillion fold...feeling it as i never experienced before.  I'm angry, weak, strong, happy, everything in between....
"Survival Mode"...breathe

There was almost a moment where we didn't think we were actually going to get the PET today.  There were issues with scheduling and the short notice of our test.   The PET is a test where they look through G's whole body to see if the cancer has spread.  In order to do this test, they had to put her to sleep again and have her "glucose deprived".  They give her slightly radioactive glucose, which is attracted to the cancer cells.  Of course, the vaginal area will show up and any other area where there is cancer will show up.  So we were relieved to have them call us in and get us started.
The process seemed somewhat easier at the moment.  They gave G nitrous gas and the anesthesiologist told her a story.  She was smiling at us the whole time then went to sleep peacefully.  Adam and I got to be with her the whole time until she fell asleep.
As we walked out to the hall, I had to hold on to Adam to keep from hitting the floor.  It felt awful.  I hate every bit of this.  Every bit of it but failure is not an option.  I know, so cliche but so appropriate.

After the procedure, G was incredible.  She woke up happy and ate two popsicles...an orange and a purple.  She had about a half of a container of shredded parmigiano reggiano cheese.  I am SOOOOO proud of this little girl!!!  She amazes me and is my inspiration!!!!!
SHE IS SUCH A TROOPER AND SO BRAVE!!!
On the way home, we looked at cows, gray herons and whatever else was out the window.  We stopped at Whole Foods and got some snacks.  At home, Bridget was SOOO happy to see her big sister.  Nana and Papa had a great day with Bridget.  When G came home, she was greeted by a beautiful Edible arrangement from the Lucero's, a huge bunny from Nana, a package from Victoria and family, cotton candy from Papa, a wonderful dinner from the Lee's and more letters of hope.  THANK YOU SO MUCH...ALL OF YOU.  I'm sure I'm forgetting some but please know we are so grateful.

The doctors said G would take about 24 hours to bounce back.  Yeah, right.  She was bouncing around all night and naming her stuffed animals....Icing, Rose, Jelli Bean just to name a few.

At this moment, Adam and I want this (blog) to be a place of positivity.  We want to reach out to you all for strength, hope and positivity.  You have all delivered.  Please continue to do so.   This road will be very dark at times and very lonely but it is a road we must face.

Gabriella: "Heroine of God, God is my strength"...  I keep looking up the meaning of my daughters name and this is what I found.
My girl...she's amazing!

Kristin

Gettin' Sassy



Thanks Vanderende's for the sassy T's!
Just waiting to leave for Palo Alto for g's PET scan today. We're trying to keep G from eating today. I know. It's sounds horrible and it is but to do the procedure, she can't have food until after.


Updates

On our way back to LPCH for a PET scan for G. She has been NPO(man acronym city) all morning and has not been happy about it.
We are planning a trip to the Monterey Bay Aquarium Sunday. We plan to be there around 11:00 am. Anybody who wants to join us is welcome. Our last day of unencumbered fun.

Thursday, March 22, 2012

More Pics

G and Bridgy with their new sunglasses from Grandma.

Mommy and G with her sassy hat on and sassy new purse. 

Daddy, G and Grandpa waiting for the meeting at LPCH. 

Lauren, G and Kiana watching movies.  

Thanks again for everyone sending gifts, hope, love positive thoughts and everything else!!!  Adam and I wish we could thank each and every one of you.  We will try...you know it!  

WE WILL DO WHATEVER IT TAKES!!!

My last post I was trying to figure out my priorities.  Today, some of those were answered.  We were told today that Gabriella has rhabdomyosarcoma, embryonal type.  This is what they had suspected.  
We met with Dr. Marina and Dr. Aftandilian for over 2 hours to discuss the course of treatment for G.  

...I'm having a tough time writing this...
Still trying to process all of the information. 
Its still a favorable outcome because of the location of the tumor.  Dr. Marina said we can cure this with minimal risk.  

The doctors want to be aggressive with the least amount of side effects and this will be done with 42 weeks of chemotherapy.  They called it "intermediate dose chemo".   Its a combination of three chemo meds that she will get either every week or every three weeks.  We will stay in the hospital for 24 hours for one of the treatments because of the nausea that ensues. The total nights being 14.  Things can always change but its a start.  Dr. Marina also talked discussed with us the different side effects of the drugs and said at the end of this, we will know so much more than we ever wanted to about all of this.  

We will meet with the radiologist on Monday to talk about when they will start radiation.  I believe it won't be for about 4 weeks but I can't remember the reason.  She will talk to us about the radiation treatment possibilities and the side effects.  This will include effects to her ovaries and uterus.  

We also discussed surgery.  They would call this a cancer operation but they want to hold off on this option due to the increase risk of morbidity (meaning making things worse).  If they did perform surgery, they would have to remove the tumor and the surrounding tissue, which would be her vagina, cervix, part of her uterus, etc.  At this point, they said it was best to shrink the tissue with radiation and chemo.  Other options will come up as needed.  We will also work on shrinking the lymph nodes as these are involved as well.  

The main things that she wanted us to take away from this meeting were the following:
1) Chemotherapy
2) Radiation
3) !!!!!!!!Curable!!!!!!!!!!
4) Treatment will be toxic but tolerable
5) Going to be hell
6) Kids are resilient !!!!!!!!!!!!!
7) Stay away from sick people
8) Eat
9) HAND WASH
10) Save money for counseling.  Ok, I'm adding that one in.  

I will THRIVE off of #3 and not stop FIGHTING UNTIL THIS IS BEAT!!!

Upcoming events:
Tomorrow, Friday, we will be back at the hospital for a PET scan.  This will be done under anesthesia but we will probably be home after.  
Monday, meeting with the radiologist at Stanford.
Tuesday, back to hospital for port placement.  This will be done under anesthesia as well.  The port will be placed under her skin in her chest and they will access it for chemo and blood draws.  I'm familiar with these thankfully.  We will probably spend the night Tues night.
Wednesday, 1st Chemo treatment.  We'll probably be there on Wed night as well.  

PLANS FOR THE WEEKEND: GOING TO MONTEREY BAY AQUARIUM AND INVITING YOU GUYS TO GO MEET US THERE!!!  At the request of G, we are planning a trip either Saturday or Sunday.  More details to come but she wanted to invite her friends and so do we.  

TEAM G!
Good night my dear friends. 

Kristin

Cruelty

The word just keeps ringing in my head. As I sat and listened to the oncologists today I was so happy to hear the positive words coming from them, cure and treatment and wellness, I did not really stop to think what it was going to take to get to them. This cruel, cruel disease with equally cruel treatments will be my G's life for the next 42 weeks and there is not a damn thing I or anyone else can do about it. Talk about helpless. The shots and needles and scans and drugs are going to become common place in my child who has never really been on antibiotics. Every drug they spoke of today will have destructive side effects that can be alleviated with another drug and another. I have been rocked to the core to think of the necessary evils that are going to save my child's life. I guess it's funny how things that meant so much to me one week ago mean very little to me now and will probably be forgotten in one weeks time. Oh how we change.
The oncologist mentioned something today that stuck with me, she said that most parents who watch their kids go through cancer treatments are wrecks by the end and are probably suffering from PTSD while the kids just remember the ice cream and getting to watch movies all day. Boy I hope she's right.

Team G

Adam

It's On!

We are sitting in a restaurant and I hate watching people ignore their kids for their phones so I will keep it brief. 42 weeks. Chemo every 3 weeks. An overnight stay after each chemo. One trip to LPCH per week. We will be here tomorrow for a PET scan. Home tomorrow night. Saturday and Sunday partying like rock stars getting ready. Monday is meeting with the radiology physicians to discus her radiation treatments. Tuesday G goes under one more time to have the port placed that they will administer her chemo through. She will stay in the hospital Tuesday night and start chemo Wednesday morning. One more night in the hospital and only 13 more treatments! Here we go. WE WILL BEAT THIS!!!!

Team G

Adam

Blog Announcements for Team G

A huge thanks to everybody for their thoughts and prayers. There is a new option on the blog on the left side called "Follow Team G", if you enter your email address in there you will be updated anytime there is a new post. This should return some productivity back into your work day.

The outpouring of offers for meals, dog walking and a myriad of other tasks is truly inspiring. If you want to be added to the Team G support crew, please email any of the contacts on the left side of the blog so we can get your info and add you to Team G Support. Once you are on the list we will be rolling out meal schedule where you can see the dates that meals are needed and sign yourself up to provide a meal. On this site there will be a couple of links to websites for menus that follow the paleo diet.

Thank you all so much for spreading the word and recruiting for Team G, you are an inspiring bunch and we are blessed to have you on the team.

Team G

Auntie Mel giving Ellie some love.

Grateful

I've been thinking about things over and over in my head and wondering, "What is really important right now?". I don't know. Priorities of course getting my girl better but what else really matters? I guess this really puts everything into perspective. I woke up this morning not feeling like getting out of bed. Adam was up, G was up, grandma and grandpa were up and grandma went to get Bridget. Ellie was scratching at the closet door (where she sleeps) and wanting to get out. My legs felt weak. So I rolled over and grabbed my phone to check my email and texts. Whether short or long, a story or just to say hi, we're thinking of you, just gave me that motivation to get out of bed! I thank you with all my heart for reaching out to us. I keep trying to express how much it helps. Gratitude just skims the surface of how much hope you all are giving me. I heard the voices of my babies and how happy they are; how innocent. As Adam said last night, this already has changed us. I see great things in our future. We've already watched Tangled and that song has been ringing in my mind, "And at last I see the light, and it's like the fog has lifted....everything is different, now that I've found you". I was singing it in my mind, walked out my room and heard it on the tv. Serendipitous. We're enjoying the morning playing and looking at all of the cards made by the Circle of Friends Preeschool. They are decorated with pink and purple feathers (so G), squares and wishes of good health. Bridget is running around with the balloons that Teacher Junie and Jules brought by just having a blast. Probably leaving here around 2 for our meeting at 3:15pm. Boy, that is going to be a long drive. I'm hopeful for good news today. Love you all, Kristin

Tomorrow

One of G and my favorite books has been "Days with Frog and Toad" and the first story is Tomorrow. Well our tomorrow is a big one. Hopefully we will see how big this thing is. How long and hard our fight is and what it is going to take to beat it.
I wish you all could see what I see right now. The laptop screen is lighting up G's face lying next to me. Is there anything more Angelic than the face of a sleeping child?(even if her eyes are open just a little bit.)
G had two fantastic days yesterday and today. Playing with her neighborhood friends and her grandparents. It was amazing to see how much running and playing she was doing less than 24 hours after her surgery. It really gave me faith that she is going to pull through this. Kids are such strong human beings.
I wanted to share something that was sent to me in a text message that I have read more times than I thought I would, I will leave it anonymous;
"the Bible says, look into the eyes of a child to see Jesus. Religion is politics, to know God is purely an act of faith. Like the wind or love. Can't see it, can't prove it...
Kris and I were speaking today, we were discussing how much this is going to and has already changed us. From the moment her diagnosis came in, we will never be the same.

Team G

Adam

Wednesday, March 21, 2012

Thanks LP and Tim

After a great day at home, the family is settling in for dinner courtesy of LP and Tim.


Today

I ran across a saying today: "Set out each day Believing in your Dreams.  Know without a doubt that you were Made for Amazing things."
It came to me at the perfect moment.  When my knees felt weak and I could barely stand.  I have to remember this.  When there are ups and downs literally every minute, its the little things that lift us up and appear before us when we most need them.

Adam and I got to the gym today.  Just walking in felt so good.  Getting hugs was even better.  Thanks guys...Lindsay, Cliff, Johnny...and all!  I LOVE the purple "Team G" bracelet idea!!!!!!!!!  Amazing...you guys are AMAZING!!!

I was thinking last night...when I'm at work in the ICU, I always tell my patients families that they have to take each day at a time, each hour at a time.  I truly didn't know what that was like until now.

Thursday (tomorrow) will be a big day.  We meet with the Oncologist Dr. Marina and her team tomorrow at 3:15pm to finally get some answers.  We will also meet with the Radiologist doctor at the Stanford Cancer Clinic on Monday at 1pm.  Two big days coming up.  I'm hopeful.

Right now I can hear the kids laughter coming from outside and it makes me happy, so happy.  Its the little things.

Kristin

Freedom for a day

We are home and spent the evening, as Kristin said, in happy bliss. A houseful of kids and parents laughing and playing was pure heaven to us and to G. It is amazing how we have the ability to let go if even for a minute.
Mornings used to be my time, I live in a house with three girls who like to sleep in. They would sleep and I could get stuff done. The last few days getting out of bed has been difficult. I found myself staring at G again this morning, wondering what the future will bring. Wishing that I could absorb every ounce of pain that she is about to endure. I was looking at her beautiful blond hair and found myself getting sad that chances are she is going to lose it. Then it hit me, from the day she was born we tried to focus her on being pretty on the inside. I think there are times when what we try to teach our children and what we really do teach them are entirely different things. I started to feel like an ass for worrying about it. Good grief.

Team G

Adam

Tuesday, March 20, 2012

A wonderful dinner and night

Tonight was such a great night.  I waver back and forth on my emotions but there was so much fun and laughter here tonight.  As I mentioned earlier, Uncle Ronnie and Auntie Mel were here with Nana, Bridget, Grandma and Grandpa.  Our dear friends Danielle and Pat came by to bring us a wonderful dinner with their girls, Brook and Nicole and my little love Murphy (their almost 4 year old Boston bulldog). Nana and Papa brought a yummy ceasar salad. The neighbor kids Lauren, Lukas, Niklas, Kiana played with G outside then all came in for popcorn and to watch Tangled then jumped outside on the trampoline and just had fun.  G was wiped out by 8pm but I'm so glad she got to enjoy her friends.  Elena and Anders, our neighbors, came by to give hugs as well.

We enjoyed the Winter's Paleo jumbalaya...so yummy!  And wine...and ice cream... and Thin Mints!!!
Bridget and I read books and enjoyed our night time ritual together.  We laughed as she pulled my headband off and on, off and on and shoved her binky in my mouth...lol!  It felt so wonderful to just enjoy the moment and not focus on the rough road ahead.

I believe we have a day off tomorrow to just enjoy.  Thursday we will be meeting with the Rhabdo Oncologist as they strongly believe still that this is a rhabdomyelosarcoma.  We are hoping the pathology reports still come in soon so we can make a plan of action.
Monday, we will be meeting with the Radiologist at the Stanford Cancer Center at 1pm to discuss treatment.  This is the plan so far but things can always change tomorrow.

I sit here writing this and still can't believe that I'm actually writing this.  My little girl is so healthy.  Its hard to believe that this is happening.  I have had this nagging voice in my head since I first noticed this tissue in January telling me to check things out further.  I wanted SO SO badly to believe it was all normal when we first saw the doctor but this voice kept telling me it wasn't.  
My only word of advice for any parent or anyone is GO WITH YOUR GUT.  It will never steer you wrong.

Good night my Army.
Team G
Kristin

some pics of G

The kids eating popcorn and watching Tangled. From left: Lauren, G, Lukas, and Kiana.



One of the bravest people I know and her dad leaving the hospital.

Home and Relaxing

We are home on this gorgeous day and so thankful!
Grandma, Grandpa, Bridget and Ellie were waking in the street when we drove up.  Bridget was so excited and ran to the car like I've never seen her run before.  Grandpa was holding on to Ellie and trying to keep B from falling.  It was so incredibly sweet to come home to.  We almost ran out of gas on 17 (I've done that before) but angels seemed to be watching us and we made it to Chevron.

Our neighbor Julie came by to say hi and Uncle Ronnie and Auntie Mel drove over to give G some love. We're all watching Clifford with G and recovering getting ready for the next phase.  Grandma is putting Bridget down for a nap.  Thank you for the beautiful flowers from the Ritchie family, the cards from Bob Smith/family and Kathy Bomguardner.  And of course your emails and encouragement!!!

Yesterday was the toughest day of our lives but today has been a new day and I am hopeful.  
The fight is just beginning!!!
Team G

Kristin

Anonymous Kindness

So Adam and Kristin are home and they were warmly welcomed by this beautiful flower arrangement. They would love to thank the thoughtful sender of these flowers but there was no card. While we fully understand the desire to stay anonymous the Cosners would really like to be able to thank whomever sent these flowers, if it was you fess up. You can email ronnie.boose@gmail.com, if you would like to remain semi anonymous.
Your prayers and the outpouring of offers for support are amazing.

Driving Home

We are in the car. Kris is driving, me and G relaxing in the back. G picked some flowers for us from the hospital grounds. Her kindness and thoughtfulness continue to bring me to my knees.i am not a religious man but I swear I have seen God through my friends, my family and especially my sweet sweet child. I have never shared much publicly like this but it really seems appropriate to keep all of you updated. Please know how much your support means to us right now.
Team G

Adam

WE ARE GOING HOME!!!

The doctors just left. Positive news: Doctors believe this is a good prognosis due to the location of the cancer and tumor. They said the cancer has spread to the lymph nodes but they haven't found it in her liver, lungs, or other immediate organs.  If this is truly a rhabdo, they will have to test her bone marrow to see if it has spread there.  Dr. Luna said she thinks its unlikely that it has spread to the bone marrow but we have to confirm.
We come back Thursday to discuss our next steps. At that time, they will be discussing the test of her bone marrow (possibly a bone scan), discussing putting in a port where they will inject chemotherapy treatments all under general anesthesia.  We believe the chemotherapy treatments will begin next week followed by radiation treatments to shrink the tumor. The doctors mentioned this could be a 22 week adventure. At week 13 we should know if the tumor has shrunk, if the three different Chemo drugs are working and if Gabriella will need another surgery to remove the tumor and lymph node.

Gabriella is doing great, she asked if there were fish swimming around her IV fluids, which made everyone giggle. G, mommy and daddy went to the gift shop to get a few things for G.  I'm sure we will be frequent visitors there ;-)

The foley is out, IV is out and WE ARE GOING HOME!!!!!   LEAVING IN A FEW MINUTES ACTUALLY!   Just have to organize our things.

Thank you Auntie Brit for being here and typing this, Shelley and Anne for stopping by and again to all of you.  I woke up today just positive that we were surrounded by love and support.  I'm sure I've said this and will say it again and again.  We are both feeling stronger with everyone supporting us and hearing from you all!

Lots of love,

Kristin

Some pics for Monday morning


G showing off one of her birthday dresses from Auntie Brit.


From left to right: Little sis Bridget being held by cousin Iskandria, good friends Nicole and Brooke Winters (sisters), cousin Caiden and Gabriella. Danielle Winters and I took the kids for a little hike in Lodato Park near our houses in January. We thought, this is what it would be like if we each had three kids!


Even being so young, these girls both seem to be so protective of each other and take good care of one another.


Our first family photo this past Christmas (2011) at Picture People.

Good morning

It's almost 0800 and I am enjoying one of my favorite pastimes, watching my beautiful girls sleep. At some point last night Kris and I switched beds so she could lay with G. G slept like a log all night and is still out. Her bleeding appears to have stopped and as long as she wakes up comfortable we will probably take her home this morning. Kris and I will come back for our consult with the oncologists as soon as the biopsy results are in. It may be as early as this afternoon it I am not holding my breath.
We are both still truly overwhelmed by the love and support we are receiving from our friends and family. Ronnie and Mel seem to be amassing one whale of an army for us. We feel your power and so does G. I have always tried to have faith in humanity and the goodness of people but I never dreamed it could go this far for one little girl. I am so proud and honored to call you all friends.
Team G

Adam

Monday, March 19, 2012

Good night

10:40pm. Daddy is asleep on G's bed. G is watching Tinkerbell while drinking milk, warm of course. She seems a little sleepy but is doing awesome. She is ok with her IV as long as we don't fuss over it. She keeps asking if we can take the "string out of her bottom" :-) It's the foley catheter, which will be taken out tomorrow. I can't wait till today is over. We meet with Dr. Luna tomorrow after 2pm to discuss preliminary results. It will take a couple of hours and we can get some idea of a treatment plan. Please know that we are thriving off every positive thought we are receiving of stories, comfort, etc. Please keep them coming even if we don't answer or reply right away! Good night. Kristin

G and China



Melting hearts everywhere.
As I lay here with my baby girl, I am overwhelmed with all of the love and support coming from all of you. It brings tears to my eyes when I don't want to cry anymore. I am so thankful for all of your calls, texts, emails from my close friends to those who I've only known for a short period of time, so thankful. A friend wrote me today and said, "May you find strength within you never knew you had.". I'm finding that strength not only from my amazing husband, parents, parents-in-law, siblings and my close friends but from all of you. Just knowing you are all out there just helps like you wouldn't believe. Gabriella woke up again upset and seemed to be in pain. They gave her some morphine and she is healing and resting peacefully. Pedi oncologist here now.

TREATABLE AND CURABLE!!!!!!!!!!

The oncologist just left the room. It appears to be metastic and in the lymph system but we heard the words we needed to hear. She said it is going to be a long hard road, but it can be beat. We will meet with Dr Luna Fineman tomorrow when the biopsy reports come in to figure out the treatment options. Gabriella had a rough time coming out of anesthia but with some pain meds and a visit from her baby sister she is comfy and peaceful. Thank you all so much for your hopes and prayers. Team G.
Adam
I had a feeling we might be staying the night here. I can't even begin to describe how we are feeling so I'm just going to give the facts. They removed a 2 x 2 cm of the tumor in order to have a large enough sample for pathology. She has a foley and an IV still. They found different tissues (soft and hard I think she said) and a couple of cysts mostly in the anterior pelvic region. They were able to flush these "cysts" and will send them to pathology as well as the tumor. G's uterus and ovaries ARE NOT AFFECTED and look fine. Her chest CT looks great. BUT this mass that they thought was her right ovary they are thinking that it possibly spread to her lymphs. We won't know the next step until we get the results from pathology. Gabriella had a tough time waking up from anasthesia; screaming, fighting and kicking. That's my girl. She was focusing on the IV and was complaining that it hurt...tht she wanted to take it out. They had to sedate her and now she's resting comfortably. We will be moving to her room in the oncology area for the night. I cannot begin to talk about my feelings as a mom. This comes from the nurse in me. We keep hoping we will wake up soon. Thank you all again. Kristin
Its 12:12.  Every minute feels like an eternity.  I just got word that Gabriella is doing great.  They are almost done and we'll know more soon.

Update from Lucile Packard

We're sitting here in the outside veranda in the surgery center...just waiting with Nana, Daddy, Uncle Ronnie and Auntie Mel. Its a little crisp but I'm just numb.

We checked in at 7am and went for the CT. This was done without anasthesia which was good. It was a little bit rough to convince her the CT wasn't going to hurt but once I asked her if she wanted me to lay on the table with her, she did amazing.
We went back to the surgery check in area and waited. Once 8:30 came around, they took us back to change Gabriella into a gown and pants. They even gave her little yellow socks. Daddy put them on his ears and made us all laugh. We made our way to the MRI area and took her to the anasthesia room. I'm shaking as I'm writing this. It was not easy to put her under. They had to place a mask on her and she didn't like it, understandably.

Its now 10:30am and we just got word that she is in the OR, still under. They are going to review the MRI and start the procedure in about 30 minutes. They need to review before they start things so they know where to look.

Please continue to pray, think, whatever....

Kristin

Pictures of my girls, Gabriella and Bridget


My baby and her big eyes. A little bruise on her nose just being a kid.

4th of July last summer.

Little Bridgy doing what she does best, being with Big Sis.

Bridget's first ride in the shopping cart with Gabriella at her side.

Gabriella at 3 years old in her Cinderella Costume.

Gabriella and Bridget at the park in their spring dresses.  



Daddy and Bryan Ward on Bryan's new adventure bike.  I love G's sassiness in this picture!

G rollerblading for the first time.  Yes, she needs a new helmet...lol!  And probably knee pads...
She was awesome!
My girls playing in the "sand box" which is now the pool.
G giving love to Ellie, our 8 year old border collie.

Gabriella and Bridget at their well child check in February, last month.   

She's In

Gabriella went under just over an hour ago. The people here are wonderful but no parents should ever have to do that to their children. Now we wait. It looks like we should hear something by around 12:30. Keeps us in your prayers.
Adam

Monday

Just wanted to share a couple photos from the weekend. Thank you all for your continued thoughts and prayers.

Auntie Mel making us dinner

Uncle Ronnie and Daddy with G enjoying a movie

A little ice cream in a martini glass

Bridget discovering Papa and sharing an ice cream


Only way Mommy and Daddy could get G on the CT scanner table.

Sunday, March 18, 2012

Gratitude

Adam and I are just so very thankful for all the positive thoughts, prayers and emails from all of you. We are so grateful for our "army", we can't begin to explain.

Bridget is back home with Grandma, Grandpa and Ellie. We had a wonderful dinner and the girls had a blast playing in the pool. Back and forth from the "warm pool" to the "cold pool". I't was so nice to have the girls together. They enjoy each other so much. I couldn't help but notice G was a little pale tonight. I don't know if it's stress but I'm sure she feels the energy around her. She woke up this morning telling me her tummy hurt. It didn't seem to bother her the rest of the day. She has been saying this every morning the last week. I just realized its probably from this tumor growing inside. Uggg. Makes me hurt.

I will post as early as I can tomorrow. We'll be checking in at 7am an getting the CT done first.

Thank you again for the outpour of love and support....the emails, phone calls and texts. It means so much.
GO TEAM G!!!

Sunday night

I guess it is my turn. As I sit here watching my little angel sleep peacefully I can hardly believe that there is something inside her that we must fight. I am not sure where I am going to find the strength for her tomorrow but some how I know I will find it. It will come from you my friends, and my incredible wife and my parents who dropped everything and were on the road 20 minutes after hearing the news. From Kris' parents who have been here and will be here for the long haul. From Bill whose words of strength have already lifted me up when I didn't think it possible. Our friends Ronnie and Mel and Pat and Danielle and Brook and Alison , who have fed us and laughed with us and cried with us and it's only day three. But most of all my strength will come from my little girl who is gonna need me as much as I need her. Thank you for your support and prayers.
Adam

Sunday Afternoon

Hi All,

We are just checking in to the hotel in Palo Alto. Its a mile from Lucille Packard which is perfect. We will be waking up early and checking in at 7am to start the day... the long grueling day ahead. Gabriella and Bridget are both here with me and Adam, Nana, Papa, Grandma and Grandpa. Uncle Brook and Auntie Alison are coming up and we are all going to have dinner together.

I just can't begin to explain how I feeling today. I woke up and had to start cleaning my refrigerator out. Thankfully, my housecleaner and good friend Martha came.

I can't catch my breath. My heart is racing out of my chest. Every emotion possible is running through my body and keeps changing every minute. I'm trying to be strong. Adam is feeling he same things but at different times.

Gabriella said to papa today, "I'm sick." and said to my mom, "I'm just having a bad day today.". I told her, "You are not sick. You are healthy and strong.". I told her the little bump shouldn't be there an we are going to get rid of it". I don't know what else to say.

We're gonna enjoy the rest of the day and swim.

P.S. I think we're ALL being saved by the food Uncle Ronnie and Auntie Mel packed for us!!! We are all famished and devouring the food but of course need to save some for tomorrow. Thank you guys so very much!

Thank you Pat and Danielle for meeting me at the gym. A few dead lifts and some hugs was all I needed.