Friday, June 21, 2013

Day #4, seeing the sights

Day #4 was a great day of sightseeing.  We were pretty much wiped out but had to see some of the major attractions.  I'm still trying to catch up on some sleep so I will write more tomorrow!
The Capitol Rotunda

The Old Post Office

Union Station with a statue of Christopher Columbus
and three flags representing his three ships.

Our bus tour driver ran into this latter
and poked a whole in the bus.  

The Smithsonian Castle
The famous Hope Diamond.

My favorite stone...sapphires.

Thomas Jefferson Memorial.

Abraham Lincoln Memorial.
Washington Monument and the reflecting pool.  There has been construction
 on the monument since the 2011 earthquake but they are planning completion by next year. 

 A dedication to the brave Vietnam nurses
who served in this war. 

Mom finding her cousin Eddy on the wall.  
World War II Memorial. 
Shuttle to the airport!

Wednesday, June 19, 2013

Coalition Against Childhood Cancer meeting, Day #3

Day #3 

Last night I was really worried about my mom so we had a plan to visit an urgent care in the morning if she still wasn't feeling well. We ended up both sleeping in a little longer than planned but it helped...both of us really. I was starting to feel a little worn down and knew I needed some extra sleep.  Mom felt better so we rallied and went back to the Capitol building for a photo opportunity with Senator Barbara Boxer.  It ended up being a great follow up to the meeting I had with her staffer, Patrick the previous day.  We talked a while after taking our picture with the Senator. I hope that leaves a lasting impression and that they are able to move forward with supporting the Acts we presented (I'll update on these later).

Me and my mom, looking like she wasn't
sick at all the previous couple of days!
Senator Barbara Boxer, small and mighty.

We had lunch and made our way to the second half of the inaugural Coalition Against Childhood Cancer meeting.  The first half was in the morning but we were able to see most of it from the hotel room on a live stream they set up. It all worked out really well. 

Meeting these cancer parents who all share the same passion, common goals and the emotional connection for childhood cancer was very empowering. Many of these parents had lost their child and wanted to continue the fight in their honor. These people were incredible and the meeting was incredibly informative on how this new childhood cancer supportive foundation will best move forward together. When we join, which we are planning on doing, we will be considered "founding members". I'm honored to be a part of this new organization and am looking forward to the movements we will make together. This is not a fundraising organization but one that will provide support and membership to enhance the roles of other childhood cancer foundations. It will help us form an "umbrella" so we can do more together.  

After the meeting, we made our way to a really nice dinner. Now, it's off to bed.  Tomorrow will be a speedy tour of all the highlights of DC on a bus tour, then the airport and home. 

I do miss my family dearly. Gabriella and Bridget are with Adam, Grandma and Grandpa. They've been swimming, going to the Boardwalk and I'm sure eating lots of ice cream.  Adam has had to work a couple of days but Grandma and Grandpa are taking very good care of the girls. I'm sure they miss me as well. I heard that Bridget woke up crying and G sat holding her for over an hour.  I just love my girls and are so proud of them!   I can't wait to get home and kiss their little heads and give them huge hugs!!  

This had been an incredible trip and I'm sure I will be talking about it for days to come!  

Remember to join us at our inaugural Team G Family Festival on July 7th! It's going to be a blast!

Tuesday, June 18, 2013

Capital Hill, Day #2

The second day was spent on Capital Hill meeting with Congress. It was officially "Childhood Cancer Action Day" and meetings were set up through the Alliance. My mom hasn't been feeling well so she stayed at the hotel to work on getting better. I grabbed a cab and made my way to the Cannon House Office. I admit I felt pretty lost but with my handy iPhone as my companion and my emails at hand, I was able to make it.  
The first meeting was with the actual Congresswoman (vs the staff person) Anna Eshoo.  Our advocacy trainer said that meeting with the staff person is just as important as meeting with the representative themselves.  The staffers do a lot of the ground work so it was time well spent.  Lisa, from St. Baldrick's Foundation and I sat with the congresswoman and he staffer and I told our story. I talked about my daughters cancer, I talked about research I've done that lead me to discover the huge lack of funding, I talked about holding my daughter when she was so sick and that the medicines they use to treat her cancer were so toxic that they burnt my arm when I came into contact with G's urine. I said "pee" and I wasn't going to apologies for it. This is the truth and they needed to know. I also talked about Claudia's experience and Tianna's experience.  We ended with Anna saying she would support the bill and we would follow up.  I actually gave her a hug and I think she appreciated it. She was a really neat lady...powerful, dynamic and a "cut to the chase" type lady but very sincere at the same time. 
Congresswoman Anna Eshoo.

The Capital, of course.  

At the Hart Senate Building.

The next meeting was with Congressman Tom McClintock which was on my own. A quick tour through the Capital then off to meet Senator Boxer's staffer and Senator Feinstein's staffer. Both meeting went well and I felt a huge sense of accomplishment for the day.  Then it was back to the hotel for a nap, checking in on my poor mom, going to the pharmacy for some cold medicine in the hopes that she would feel better then off to the Coalition Against Childhood Cancer (CACC) informal meeting at one of the local hotels. Tomorrow is the all day inaugural meeting for this newly founded organization but I might be taking my mom to urgent care so she can feel better.  We talked about going to the ER but thought an urgent care would suffice.  We will see. The thought of going to the ER makes me cringe a little...bings back memories. But if she needs it, we will definitely go.   I'm off to get some sleep!

Monday, June 17, 2013

DC, Day #1

I told myself no matter how late and how much I needed to do, I was going to write an entry about every day of this Washington, D.C. trip because I knew it would be something incredible. Plus it's something I've never done before. 

On Father's Day (eve) after a nice celebration with the dads in our life, mom and I hopped in the car and drive to SFO for a red eye to DC. I knew I would dearly miss the girls but I was ready to have a break from the whining of my 3 year old. And I knew as soon as I walked out the door, I would really miss their gooey little fingers and squirmy little selves that crawl all over me the better part of the day; which I did.  Mom and I got a coffee, dinner and were off on a pleasant flight. We knew taking the red eye  would be rough but it was doable. The flight was only 4.5 hours (not much sleep) an we felt like zombies when we got to DC. After finding the shuttle and driving through town with the stereo blasting rap music (it really wasn't that bad), we made it to the hotel, took a nap and made our way on the Metro to Virginia to the American Society of Clinical Oncology where the Alliance for Childhood Cancer training was being held.  We got a little lost on the metro but eventually found our way. It was fun and reminded me of our trips to Europe. Once you got the hang of it, it's easy. 

Being in the room and hearing the speakers was an incredible site to see. These are people I've connected with over the past few months and started to form relationships with, people from all over the nation who have shared similar experiences and who all have the same goal in common....eradicate childhood cancer.  I've never felt so comfortable with a group of people.  One of the speakers who has been a lobbyist on Capital Hill was a cancer mom herself.  Her son was diagnosed with embryonal rhabdomyosarcoma when he was 3.  Imagine that. He is now 8. As she told her story, the tears started to fall down her face. I did my best but I could feel the tears building up behind my eyes as well. It is such an emotional journey dealing with a sick child. Most of us have experienced it in some capacity.  For cancer parents, you come to a realization that there is so little being done to better the treatments and prevent these cancers from happening that you feel you need to do everything you can to change that. 

We got a chance to meet and talk with Dr. Adamson, head Chair of the Children's Oncology Group and who will help us designate funding for research. We also talked with members of St. Baldrick's and realized we were sitting at the same table, our "California" table as their Executive Director.  I didn't realized they were founded in our home state. St. Baldrick's is the largest funder of pediatric cancer in the private sector.  One of their biggest fundraisers is the shaving of their heads. We discussed a partnership for grant funding and will further explore that area once the research funds start coming in. 

We talked about lobbying and the best ways to be efficient. We talked about the bills and acts in place and how to ask congress to support these acts (which I will share later) so they will move them further up the ladder. There is a lot of lingo I'm not totally familiar with (maybe I didn't pay that much attention in high school history class...) but things I expect to be learning over the next few days.  Tomorrow we will be meeting with House Representatives and Members if the Senate on Capital Hill. I'm really pretty excited about this. Maybe I'm naive but ill be damned if I'm not going to try to make some changes!

Remembering why I'm here. 

Listening to Dr. Peter Adamson, Chair of COG

There are really two people who I wish we're joining us here and that is Claudia from the Team G Board and Gretchen of Cookies for Kids' Cancer. I think the world of these two ladies and I know their stories and work for childhood cancer would resonate profoundly with legislators who we will share our stories.  As I've gotten to know Claudia, I see such an amazing individual.  Having fought cancer herself and being the product of cutting edge research, treatment and medication, she IS living proof that survivorship is the end product of cancer funding.  Watching her daughter, Tianna go through antiquated treatments and not surviving has made Claudia only want to fight harder.  If you haven't yet seen the video, please click on the link:
...And you will see what I'm talking about. 

As for Gretchen, I have gotten to know her as an inspiring, classy and dynamic lady who has already done wonders in the world of pediatric cancer. I know she would walk in, tell her story with such conviction and blow them all away.  Cookies for Kids' Cancer will always have a special place in my heart since it was one of the first organizations that reached out to me (via Michelle and Cara) and knowing how the story ties in so close to home. 

Before I get knocked into the world of dreamland, I must do a little homework for tomorrow so I can be ready and prepared. 

Thank you everyone for all of your ongoing support!!  Wish us luck tomorrow!

Thursday, June 13, 2013

3 Month Scans...CLEAR!!!

Let's just cut to the chase and the good news...Gabriella's 3 month scans were CLEAR!!!!  Hearing this was music to our ears and we're once again celebrating (in exhaustion and with a bit of caution).

Tuesday was a long day starting off with an early waking time, picking up Adam from work, and heading to the hospital.  It was the usual process that we know all too well.  We ran into many familiar faces and everyone who knew G when she was in treatment was amazed at how well she looked and how much her hair had come in.  The anesthesia process was a little different this time since G didn't have her port.  She had to have the mask for her induction then an IV was placed while she was sleeping.  Since Bridget was with us and couldn't go in the prep area, we had to divide and conquer.  I took B and Adam took G.  It's never easy to see your child put to sleep and it was hard not being there with G and Adam.  Next time we'll plan better or we'll just have to start a babysitting service at Packard (hahah...a project for someone else to work on ;-)).  It would be nice because there are days where the doctors need to see Gabriella for an appointment followed by a conversation she just doesn't need to hear.  But we do our best.

We saw our favorite waiting area greeters, many of the post op nurses and some of the surgeons who all played an important part in G's treatment.  They normally call us in once G starts to wake up but she was already awake.  She wasn't happy in general but especially not about the IV.  This is pretty common the few times she's had the gas to put her to sleep.  While she was waking up, one of the surgeons came in and said to me, "We found something".... and the rest of what he said faded out because all the blood ran out of my whole body at that moment and I almost passed out.  As I was trying to listen and not panic, I realized he was talking about something not cancer related. He said they found a "fibrin sheath" where the tip of the port sat for a year and wanted to make sure it wasn't plastic.   Ugg, really?  Surgeons.  Great guy but when you are talking to a cancer parent, it would be best to lead with something like...."this isn't cancer related but.....".  G had to wait a little while longer to make sure that this outline they found on the CT wasn't a foreign body and was safe to leave as is.  After a little while longer, we finally got to leave and meet up with Adam and Bridget.  We went to the Oncology unit to say hi to one of our favorite nurses (and an old classmate) Shelley.  It was nice to see everyone being on the other side of treatment.  We even got to drop off one of our starter packages to a family whose 4 year old daughter was just at the beginning of her fight.

It's been a long week and we are emotionally and physically exhausted.  Our celebration was somewhat cut short from the call scheduling our next CT/MRI in September.  Not a fun thing to think about since we just made it through this scan.  Then of course, there are the side effects we have to watch for...secondary cancers, leukemia, possibility of infertility, bladder cancer... the list goes on...all at the cost of "curing" her.  For now, we're enjoying every moment just being with our girls and loving life!  I'm still pretty darn positive that Gabriella has beat this!!!!

We hope you can all make it help launch our foundation at the Team G Family Festival on July 7th and celebrate Gabriella's end of treatment!   It's going to be a great celebration and a lot of fun!

Monday, June 10, 2013

I've hit a wall

I figured this would eventually happen.  I didn't know how long I could keep up the mad pace without eventually having to "catch up" with rest but I was going to keep going to see what happened.  I'm sure it won't last long...maybe a day or two and I'll be back at it again.  With scans coming in less than two days, it's not so much the "scanxiety" that I'm feeling this time but the undeniable fear that lies right beneath the surface that has brought me to a standstill.  It's the anxiety I live with every day that I've turned into adrenaline and put to good use. That's probably what has kept me going this long at such a crazy pace.  

The past few months have been spent in a fabulous tizzy of adventure and living life.  We've gone from Disney World, to running a marathon, planning events, working on the foundation, to adjusting back to a busy life of school, swimming, birthday parties, extra curricular activities and just not having to sit around the house anymore.  There has been many nights staying up late making sure that Team G Foundation's message and mission comes across clearly and has been something I've been so dedicated to these past few months.  I'm so proud of what it's becoming and I'm so proud of the individuals who are a part of it...our board.  Even my girls seem excited about getting involved and helping others.  

The fact that I've needed to stay busy and fill my plate to the max is with good reason.  It's too hard to stop and re-live the memories.  Being busy has helped me live in the moment and planning....planning...(something we didn't get to do much of for the past year) has helped me move on.  Our lives have been full and we've been cherishing every moment.  I'm pretty positive that Gabriella has seen the worst of her cancer but the reality is that cancer... is cancer.  It lies so close to the surface just as the memories of every difficult moment.  They are still so fresh.  The smells...the sounds...the feelings.  For the past few months Adam I have been doing our best to process the past year little by little.  It's not easy to re-live those moments of fear and dread especially when they can resurface so quickly and easily.  Looking at pictures we took of the difficult moments just brings me back to that place in time and the tears can come rushing back quickly. We meet those tears with resistance and push them back down with the understanding that we will probably visit them again soon.  I often can't look at the pictures for more than a moment because it's just too painful.  The fact that I can still listen to my daughter laugh, watch her run around and play, hold her tight in my arms and kiss her precious little head is a luxury I do not take for granted.  Some parents don't have this luxury and my heart breaks for them.  Other parents will face this reality all too soon. 

What can I say about G...she's just an incredible little girl!  She's been growing like a weed and her hair is coming in beautifully.  The other day, she came up to me wiggling her tooth and said, "mommy, what's this?"  I told her it was her first loose tooth and she was so proud of herself!  A couple days later, it came out and she got a visit from the tooth fairy.  She also lost the tooth right next to it about a week laster...then "lost" that one in the parking lot.  The tooth fairy still came after she wrote a nice note to her letting her know about the lost tooth ;-).  Gabriella is back in swimming lessons (as is Bridget) and has been doing so amazing!  The first day, she jumped back in the water like she hadn't missed a beat.  
We've also taken a couple of trips to Vine Hill to get her registered for kindergarden.  I really don't know if I'm ready for this step but I guess I'm going to have to be.  It just seems like we missed such a big chunk of her pre-k years and in all reality...we did.  She is really excited about kindergarden and was asking me all about it after taking her preschool graduation picture.  
We let her know we're going back to the hospital for her "pictures" and she let us know she's really excited to take her "dizzy nap".  I wish I shared her enthusiasm.  

The tooth fairy came for G on the same night the "ME" fairy came for Bridget...May 7th, the day before her 3rd birthday.  The "ME" or her pacifiers have finally flown off with the good fairy that will take them to the hospital for the new babies who need them. Whew.  Adam and I were not looking forward to that day but with the months of telling her that the "me" fairy would be coming soon, she really was prepared.  She gladly left them at the front door before bed and didn't have too much trouble falling asleep.  The fairy brought her a new pink hamster house for their pet "Peaches".  Yes, Peaches is still surprisingly with us.  There were some tears the days following but I think she was really proud of herself for taking this big step.  The next day we celebrated her birthday with a pony candylicious party.  She's been doing amazing in swimming as well and has just followed her big sister's lead.  Bridget is an incredibly generous little girl.  She is still 3 and has her moments but she is always willing to give G whatever she has that G wants...which is pretty much everything. 

The was the hardest, coldest most beautiful race I've been in and it was awesome!  So awesome, we're gonna do it again next year!  The day after getting back from Florida, I packed up and headed off with my dear friend Angela and her husband Alain to Big Sur.  We set up camp and were able to get a good night sleep before heading to the starting line in the morning.  It was a foggy morning and the cold was lingering throughout most of the race.  We were blasted with cold wind at the top of most of the passes and it was cold.  The sun came out for parts of the race but overall, it was chilly.  I kept thinking in my head that no matter what, I was going to finish and see my girls and hubby at the finish line.  (I even got to see Uncle Ronnie ;-)  I thought about everything G went through and it motivated me like nothing ever has.  A couple of times near the end, I had to hold myself back from bursting into tears.  The pain was there and as one of the motivational sayings reminded's only temporary.  The glory will last a lifetime.

What an incredible night this was.  I did my best to keep up with Michelle and Cara to help plan for the event but they are just too good at it!  The commitment and the dedication that these ladies put into it was incredible and it showed in how amazing the night was.   They raised over $52,000 that night!!!   $42,000 is being sent to Cookies for Kids' Cancer and Jacob's Heart.  I had the honor of introducing the Warrior Mama's and childhood cancer survivors (and with a little more preparation and practice, this will come more easily the next time.  This was very difficult and amazing all at the same time.  The beginnings of the night, I got to talk with all these ladies and hear the stories of some I hadn't heard before.  I also got to talk with the young survivors and stood there in awe of them just knowing what these young girls had gone through.  Adam brought his Captain Beau and Firefighter Jimmy to auction off the Firehouse Dinner.  It was so great to have these guys come to help us raise money for the cause.  It ended up my fun loving sister-in-law bought the dinner!  Some of us went to the balcony and got to send off lanterns into the nights sky courtesy of Angela.  It was just a wonderful night and to be such a big part of it by working with these ladies and meeting the mom's and survivors, was even better.  
Here is the video if you missed it:

I've never felt so passionate and so dedicated to making something like this happen.  I've spent hours, many late at night thinking, planning, adjusting and just making sure that everything is coming along the way it should.  There is so much to do and I feel at times I've become obsessed.  I often have to pull myself away and check back in with reality.  More on that later.  For now, what we are doing and what we are going to accomplish is helping all of us with perspective in our own life and it gives everyone a great sense of unity and strength that we can do this together.

I decided this needed a whole post on it's own so I'm working on that.  Stay tuned for was incredible!!

Life's little reminders.....

The other day I spent over an hour marinating in a heavily chlorinated pool and even after 3 showers, I still smelled of chlorine.  But seeing both Gabriella and Bridget flourish in the water because they both felt safe with me nearby and having my full attention made me want to sit there forever.  I'm not a perfect parent by any means.  Heck, I've been so busy these days just doing things, I sometimes wonder what my kids think.  I still get frustrated with my children at times, especially now that Bridget is in her 3's but more than ever before this whole journey, I have the ability to take a step back and put things into perspective.  I look at my G and I'm still able to hug her, to kiss her little cheeks and head that is growing this amazingly beautiful new hair and I am SO grateful.  So often, I read about cancer parents loosing their child.  It makes me even more grateful...for every tear, scream, glass of spilt milk, all the laundry....for all of it.

Good night for now.