Wednesday, April 16, 2014

14 months out.....CLEAN SCANS!!

I'm happy to report.... wait change that...I am ecstatic, overjoyed, relieved beyond words that Gabriella's scans came back clean yesterday. Clear, cancer free, no signs of cancer, remission.... whatever we want to call it...it's GONE!  Cancer you lose!!!  Wait, let me rewrite that....CANCER YOU LOSE!!!  

Yesterday was a long hard day but the farther out we are from the end of treatment, the easier it gets. Trust me, it's still not easy because all of those initial feelings still boil to the top when we revisit similar scenes, similar faces, and similar situations when we were first diagnosed. The farther out we are, the less chances the cancer has of coming back. Unfortunately, due to the treatments that cured her, we still need to keep an eye out for secondary cancers but I have to live in the present day and know my baby is healthy and cancer free. 


We used to have weeks and weeks of scanxiety (funny how my phone automatically fills that word in) and now it is only a few days prior to the test where we really get nervous. Now it's maybe even a day before. This is a good thing because my mind is not always consumed with the idea of the cancer coming back. I'm actually pretty convinced that it won't but as a cancer parent you have a superstition that the "cancer trolls" are hiding in the walls and will hear you. It caught us all off guard first time around and we never want to let that happen again. So we all anticipate and be prepared for the question "what if". We don't ever want cancer to outsmart us again or sneak up on us like it did the first time. 

It's intersting how little signs from the universe seem to appear the day of or the day before scans. I'm not superstitious and I won't freik out if signs don't appear the next time but I look for things out there....a blood moon or a full moon....no traffic on the road where there is normally boatloads...a double rainbow...a shooting star....letting me know all will be ok.  Maybe it is just at those times where I really stop and absorb the world around me.  I need to do this more often. 

As for the girls, well, they are just amazing. Gabriella had her MRI without anesthesia, which actually changed from the original plan of having her under general for the scan then transporting her for the exam asleep. This was the second time she did this and she did fantastic. She actually chose me to stay in the room with her, which normally doesn't happen since she such a daddy's girl ;-).  When we were getting her ready, I could feel the machine (since it's a magnet) slightly pulling on my earrings. That made me a little anxious but I didn't want G to feel I was nervous. She had her video eyeglasses on watching the movie......can you guess......Frozen and was pretty happy about that. The machine was loud....really loud and made me a little jumpy. (I think some of this is post trauma after going through a year of hell) I was surprised and so proud of her for hilding so still during the whole procedure. My little hero.
Bridget was pretty amazing too.  Since my mom came down to go with us to the hospital, Bridget had the option of coming. We like to give her some control over the situation and make sure she can have a say in her options. She said to us, "I want to come with you when Gabbi takes her disney nap."  G calls anesthesia her "dizzy nap" and it was really funny to hear Bridget call it a disney nap. 
After the MRI and before the exam, B for to come in and see G. My mom got her a little stuffed animal and after we said, "Look what G got for you", she said to G, "Look what I got for me". Made all the nurses and us laugh. 

As for today, I'm overcome with a feeling of relief. Nothing can change that. 


Thank you all again for being here with us. We can't tell you how grateful we are to have your support. 


Wednesday, March 19, 2014

Visit to Seattle


MY THOUGHTS.....

As I'm writing this post, I realize that my thoughts are so scattered on this subject.  So, I will do the best I can to tell the story of our past week.  It was an incredible learning experience and I'm still trying to wrap my head around all the scientific definitions that were explained to me just a few days ago.  Now I understand why these scientists get PhD's!  You can't just learn this stuff in a day...or a week.  It takes years.  

We recently took a trip to Seattle because Adam was competing in the Scott Seattle Stairclimb for the Leukemia Lymphoma Society.  I have conflicting feelings about LLS and only because I've heard that the amount designated to pediatric cancer is only $0.02 of every dollar raised.  Granted, this was a statistic from 2007 without much information out there updating this information.  I'm still looking into it so if anyone has any new updates, I'd love to hear them.

A couple of the scientists I met were specifically doing experiments for children....like rhabdomyosarcoma...trying to find out specific markers in the tumors so they can target drugs more specifically.  But the others that I met are using the backbone of general studies to find cures for childhood cancers.  Ok, do you remember hearing about the "HIV injection to save the little girl with leukemia"?  Scientists are using an "HIV backbone... a piece of the virus..." as I was told by Dr. Courtney Crane.   That study, called Cancer Immunotherapy, started with children over 18 years of age.  It's in a Phase 1 study at Seattle and a Phase 2 study at CHOP, where they are starting to use it on children over the age of 1 years old.  What Adam was told when he did the stair climb was that LLS gave $4 million to CHOP to get this into a Phase 2 study.  As for finding anything written about this....I haven't yet.  

What I did find was the LLS 2011 Annual Report.  It does say that the LLS donates 24% to research.  The other percentages go to 36% for patient and community service, 14.8% for public health education...etc. etc.  But if that $4 million is only a portion of the 24%....then that is some big money. I still have much to research and learn.  

(Have I lost you yet?  I know, a lot of facts and numbers.)

Never the less, my most important mission is to fund pediatric cancers and promote foundations that work to develop research and new therapies specifically for childhood cancer. I think awareness for lack of specific funding for pediatric cancer is devastating and I have seen the effects.  The important question is "How much is specifically given to pediatric cancers?".  It is imperative that there are organizations out there like Cookies for Kids Cancer, St. Baldrick's, and Alex's Lemonade Stand that specifically focus on pediatric cancers (and of course Team G Childhood Cancer Foundation).  Not only do they raise funding specifically for pediatric cancer, they create awareness surrounding the issue that these cancers receive less than 4% of the total NCI budget.  Consequently, children are still being treated with archaic medicines of the past resulting in high toxicity during treatment and multiple long term side effects.  

During our Seattle visit, I also learned that government funding only covers about $2,000 to treat each child with cancer. The total costs for each child being treated is anywhere from $4,000 to $6,000.  This deficit is only made up by philanthropic groups like the ones I mentioned above.  

I think its also important to focus on the "statistics" that the world seems to be focused on.  Yes, cure rates have gone up in the last few decades but to say that 80% will survive up to 5 years after diagnoses, doesn't take into account the children that have fought for all those 5 years and who have died at 6 and 7 years.  It doesn't take account that if you break down the cancers by types, you have a huge amount of leukemia's being cured and on the flip side, survival rate for many brain cancers is still very low.  It also doesn't take into the account that "the cure" comes at a very high cost....secondary cancers, late effects on growth and development, organ dysfunction; only to name a few. 


OUR VISIT TO SEATTLE.......

Our visits were set up by the director of the Seattle Children's Hospital Foundation, Mark Ruffo.  We met him at the main entrance of the hospital where we were greeted by Dr. Doug Hawkins.  If you have read some of my blog before, Dr. Hawkins is the Head Chair of the soft tissue sarcoma committee for the Children's Oncology Group and the principal investigator for COG at Seattle.  I saw a recommendation that describes Dr. Hawkins perfectly...."equal parts honest, courageous, brilliant and compassionate."  I'm going to add in there, extremely humble as well.  With him, he had Dr. Erin Rudzinski and Dr. Gail Duetsch.  These doctors are all currently working on an analysis of sarcoma tissues called TMA (tissue micro-array) to target and analyze the tissues for similarities, look for biomarkers of specific genes and propose targets for specific drug interventions.  They can examine these tumors side by side for both general patters and very specific effects. 


In the picture below, Adam is holding a slide which is an example of the sarcoma tissues for analysis.  A "core" is taken out of the tumors, placed in the white block (for lack of a more scientific explanation) and cut into tiny sections to be placed on the slide pictured left.  There are about 50 sarcoma samples in this one slide!  I wonder if Gabriella's tumor is one of them? 

An example of analysis of about 50 sarcoma
tumor samples on one slide! 

From the left; Dr. Erin Rudzinski, Dr. Gail Duetsch,
Dr. Hawkins, me and Gabriella.  Bridget was hiding behind G.
All phenomenal people and brilliant doctors. 
(Are you still there?  Thank you for continuing to read.)

The next visit was at the Ben Towne Childhood Cancer Research Center, named after a little 3 year old boy who lost his life to cancer.  We met with Dr. Courtney Crane, a brilliant young doctor who is as personal as a friend you would meet for coffee.  The basis of her work comes from Dr. Michael Jensen who is working on reprograming the immune system.  Dr. Jensen's research program placed a strong emphasis on bench-to-bedside translation research and resulted in seven FDA authorized investigations of new drug applications including the first human application of genetically engineered T-Cell specially for lymphoma, neurobastoma, and malignant tumors. This research is incredible taking into the fact that an HIV backbone is used to help reprogram the body's immunity to fight cancer!

Dr. Courtney Crane's investigation includes working with what Dr. Jensen has discovered and applying it specifically to brain tumors, sarcomas and solid tumors in order to program the body to target and kill these cancerous tumors.
A picture of Dr. Crane's lab and some of their equipment. 
Dr. Crane in front of a part of the lab at Ben Towne. 


Adam, Dr Crane, and me in front of a wall of information
I've been trying to understand along with many donations
which will soon include Team G Childhood Cancer Foundations!
(Take a deep breath...)

Mark and I then made our way to the Fred Hutchinson Cancer Research Center where we met. Dr. Scott Diede.  He is currently working on epigenetics and DNA methylation.  I am still trying to wrap my mind around the science behind his studies so this picture is the best way for me to explain his research.  He is specifically working on rhabdomyosarcoma (yay) and finding similarities between the DNA of this cancer so that more specific treatments can be developed.  


Bare with me.......

The last and final visit was also at Fred Hutch.  I met with scientists and Phd's, Andrew Mhyre and Collin Correnti, who are part of Dr. Jim Olson's research staff.  They are working on a project called Tumor Paint, which was developed from proteins extracted from a scorpion...yes, a scorpion.  This venom (called chlorotoxin) has a molecule that acts like a flashlight and has the ability to "light up" brain tumors, which helps surgeons cut out the cancerous video rather than normal functioning cells.   Watch this video.....Dr. Olson explains it much better.  From this discovery, Project Violet was a success of the tumor paint.  

I realize I might have lost some of you with all of these scientific explanations (at least scientific to the best of my abilities).  So, if you are still with me here and are interested in learning more.....continue reading......and thank you for continuing to read.)

Project Violet was named for a little girl (named Violet) who was diagnosed with an inoperable brain tumor.  In essence, scientists are using nature and working on developing a less toxic, more effective class of drugs.  

"Inspired by nature’s medicine chest, Olson and colleagues created an entirely new class of drugs: “optimized peptides” or “optides” for short. These tiny molecules can be instructed to bind to particular kinds of cancer cells, disabling only those cells. They also can be attached to chemotherapy drugs, transforming them into precision therapies that spare healthy cells. Optides are also potentially less expensive and more powerful than other next-generation therapies."


So, guess where these optides are made?!?




RIGHT HERE!!!  The first picture is the machine funded by cancer parents and caring individuals who have supported Project Violet!  The second picture is Collin taking out a sample to put under the microscope to verify the peptides are being made.  The third picture, was the whole screen that "lit up" to confirm the process was actually working.

The cool thing about this machine (.....did you watch the video?......) was that it used to take these guys months to make a few thousand peptides.  Now, with the help of this machine, it takes weeks to make hundreds of thousands!  From here, many more experiments can be conducted!

Behind the scenes for finding a CURE. 
Does anyone know what this is?  

Collin and Drew hard at work with another important
piece of equipment funded by cancer parents in order to
manufacture these proteins.  



 I found this project to be incredibly inspiring.  I'm a visual person and learn by visuals and to actually see these studies happening was thrilling.  The time everyone took to show us their work, explain the science behind it, and tell me this couldn't happen without the help of caring passionate people, was more than the push I needed to continue on this mission. 

The passion that extends throughout these teams of doctors and scientists in the pediatric cancer world is unsurpassed from any that I've ever met.  We've spent a lot of time engaged in this world, making connections across the nation, and meeting very influential individuals.  This common theme holds true and extends across the spectrum for all of these individuals who have been inspired by children fighting cancer.  Whether their involvement is looking under a microscope, dealing directly with patients, or being a cancer parent themselves....that common theme is pure compassion which translates into passion for their work....passion for finding a cure.   It's the thread that holds us all together.  

Thursday, March 6, 2014

Researching research

We're taking the girls up to Seattle to support the Santa Clara Co Fire guys who are participating in the Seattle Stair Climb Team 1165....to raise funds for LLS. I just arranged a visit to Seattle Children's Hospital, where we will meet one of the doctors who was heavily involved in Gabriella's treatments by advising our doctors along the way. 

We will be taken to the Fred Hutchinson Childhood Cancer Research Center as well as the Ben Towne Childhood Cancer Research Center (who all work in conjunction with Seattle Children's Hospital on pediatric cancer research) to visit some of the researchers, scientists, and doctors who are.......basically working to save our children! I am SO excited about this, especially meeting Dr. Hawkins. 

There are four proposed pediatric cancer centers that our board is looking into funding and I'm thrilled about the research that is 
already happening at these locations.  


Stanford University associated with Lucile Packard Children's Hospital
2013-2015 (SBF) Pathway Directed Treatment for Refractory AML-consortium member

2011-2014 (SBF) Pediatric Blood & Marrow Transplant- consortium member

2011-2014  (SBF) New Approaches to Neuroblastoma Therapy- consortium member

2013 (Rally Foundation) Brain tumor research

2012 (Rally Foundation) T cell ALL research

2011 (Rally Foundation) early phase trials

2010 (Rally Foundation) Survivorship

2007 (Rally Foundation) MLL Research Mixed Lineage Leukemia


UCSF affiliated with UCSF Benioff Children's
2012-2014 (Rally Foundation) Malignant Astrocytomas brain tumors Dr. Theodore Nicolaides

2013-2015 COG Targeted therapy for ALL-consortium member

2011-2014 (SBF) Pediatric Blood & Marrow Transplant- consortium member

2011-2014  (SBF) New Approaches to Neuroblastoma Therapy (NANT)- consortium member

2010-2012 (Rally Foundation) High Grade Glioma Research

2013-2014 (Rally Foundation) Medulloblastoma, Dr. William Weiss


Seattle Children's Hospital 
2012-2014 (SBF)  Prognostic significance of gene fusion in low or high risk rhabdomyosarcoma

2011-2014 (SBF) Molecular Targeting in non-rhabdomyosarcoma soft tissue sarcoma

2013-2014 (SBF) PBMTC Late Effects (Pediatric Blood & Bone Marrow Transplant Consortium)

2013-2014 (SBF) Stand Up to Cancer/St Baldricks Dream Team

2012-2014 (SBF) Health effects after Anthracycline and Radiation Therapy (Heart Study) COG study

2013-2015 (SBF) Pathway Directed Treatment for Refractory AML-consortium member

2011-2014 (SBF) Ex vivo expanded hematopoietic progenitors for AML supportive care (reduces the risk of infection/death during neutropenia).

2011-2014 (SBF) Pediatric Blood & Marrow Transplant- consortium member

2011-2014  (SBF) New Approaches to Neuroblastoma Therapy- consortium member

2011-2014 (SBF) Pediatric Myelodysplastic Syndromes and ribosome dysfunction-consortium member


Children's Hospital Los Angeles
2011-2014  (SBF) New Approaches to Neuroblastoma Therapy (NANT)- Lead Institution

2011-2014 (SBF) Pediatric Blood & Marrow Transplant- consortium member

2013-2015 (SBF) Multimodal immunotherapy for Neuroblastoma


2009 (Rally Foundation) Relapsed ALL Leukemia

Admittedly, I'm a science nerd....I just LOVE it! And to put that with the passion I have along with my Board at Team G Childhood Cancer Foundation to find a less toxic way to CURE childhood cancer.....I'm on FIRE!!! 
Will keep you all updated on what I find!

Friday, February 21, 2014

Balance

I struggle....often. I struggle with the fine delicate balance which is life. It's a teeter totter...up and down, down and up.  Every morning I find myself allocating time for each aspect of my life.  Every evening, I ask myself if I achieved that balance.  It can be anything from drinking enough water to maintaining a balanced diet to making sure all the bills got paid, etc.  Questions all day run through my head....  Am I working too long in the computer? Do my kids need me?  Is someone trying to reach me?  Is there important information that I'm missing?  Did I read enough with the kids today? Did we play enough?   Yes, it's exhausting.  Does every parent do this?  Or just obsessive ones?  Too many times, I've read passages and posts of cancer parents talking about their obsession...and guilt. "Too many precious hours researching, trying to save my child's life when I should have just put the computer down and spent time with him".  

It is so easy to see how precious life is when you question whether it will be always be there. That's an easy decision.  The fight has to be fought.  And you do. But life has this funny way of balancing it back.  Possibly the belief that it will, once again, always be there.  Maybe this is a coping mechanism?  Maybe this is a way to deal with returning to real life?   Cancer had my child....and we fought.  We fought like hell.  We won. Life doesn't go back to "normal"....whatever that might be.  It just changes.  And now, we fight like hell for every other parent who has a child with cancer now...and in the future.

These days often need adjustment from one to the next. It goes without saying that my family, being a wife and a mom is the first priority. Do I really need to write this?  That would always make the most sense. But sometimes these obsessions take over and makes me question my actions for my intentions.  Maybe it just comes from a place of guilt deep down.  I fought like hell for her life. Why don't I want to spend every minute with her...and Bridget?  Ok, I secretly do...but I don't.  That would just be weird. I want her to be independent...her and Bridget. And I want to...I need to see through my own passion. 

Adam and I are a pretty good balancing team. He pulls me back from getting too crazy into the plans for the foundation, I pull him back in, he starts to pull me back again....then I start pulling him in again. This morning, he tells me that I was funny going to bed last night.  I asked him what happened and he said "you were lying there with the phone on your nose. You were trying to 'think' before the ambien kicked in and I kept telling you to go to bed".  Now I know why my nose is sore...my phone fell on it.  Thoughts constantly run through my mind and keep me awake at night, unless I take my ambien. Yes, ambien.  I take it often. When I don't, I don't sleep.  I was trying to write down my ideas...for the foundation....how to bring in more money....find that critical piece of information....so we can start making a difference against pediatric cancer and set out what we aim to do...find a cure.  

It's funny to hear myself talk about a "cure". I never believed it was possible to cure cancer in my pre-cancer mom days. Now, it's all I hope for.  There are so many ways....so many ideas. It's scary. I don't want to loose myself in this foundation and forget why I'm here in the first place....because of my daughter....because of my family.  But I want to make a difference. It's a balance. 


I sometimes read that as soon as a child is diagnosed, it's like that's when life began.   You want to soak in every single second, every breath, every movement and never forget it. Why does it have to be like this once a child is diagnosed?  Because we easily take it for granted....life....thinking it will pretty much be there....why wouldn't it?  I go a million miles an hour.  But to stop and watch my girls sleep is just heaven. The other night, G must have known I needed her. She asked me to come lie with her.  I got to watch her little face, which brings me back to when she was a little baby. I got to soak in her hair...taking a deep breath and soaking it all in. I hope I never loose that. I hope I never have to think again about loosing that. 


My thoughts are scattered. I just needed to put them down and get them out. Today I attended a celebration of a little girl who lost her battle. She was killed by brain cancer. I don't go to these often. It's too painful. But I've been drawn in by this story.  I helped this mamma and this family say good bye to their little girl and thank them for the good they have done in terms of sharing their story with the world and their completely selfless donation of their daughter's tumor.  Ironically enough, it ended up in the hands of our board member who is at Stanford and heavily involved in the research aspect of medicine. How ironic. 

I held my little girls tonight, hoping that they would grow up knowing how much they are loved. Even when they drive me crazy or when I need a "mommy" break, I would do anything for them and give them every opportunity I can.  I'm always hoping my time Is balanced between them both and sometimes wish there were two of me...to be with each of them. 

Every moment, life is a balance.  A precious balance.

Thursday, February 6, 2014

A YEAR post treatment

I did it.  I didn't want to...like every other parent, mother, father on this planet...I did it.  I opened my heart and my eyes to a little girl dying of cancer and I've been reading her mom's blog...daily.  It's not that my eyes were closed (obviously) but to continually read stories and and blogs about little kids fighting (and dying) from cancer is emotionally draining.  I see why people won't read it.  I see why people turn their backs to it.  It's heartbreaking.  It's literally gut wrenching.  And most of us turn our backs and go on with our lives because it is just too sad to be a part of.

Well, I get it.  I've lived it.  But that doesn't mean we need to turn away and not act.  It doesn't mean that we can turn away and pretend like it doesn't happen...like it will never happen to us.  For every parent I know who has fought their child's cancer, they felt the same way.....it won't happen to me....the chances of it happening to me are rare...  I'm here to tell you.....WAKE UP!!  I was exactly this person. I didn't want to see it because it was TOO HARD.  Being a nurse and all, you are "aware"....sort of.   We know childhood cancer happens and you know children die of it.  But to actually get inside and feel and see the gut wrenching trauma that happens....yes it IS HARD....but it happens.   It happens all too often.  Damn it.    Reading this little girls story is so hard.  It has me emotionally to my knees and in tears for her family.  I hate it.  I hate every minute of feeling this way.  And she's not even my child.  I don't even know her yet it still rips me apart.  She is dying.  She will die in a matter of days.  And she's only 6 years old.

Throughout this horrifying journey, I have meet so many parents who have lost their child to childhood cancer.  I've read their blogs and I've talked with them face to face.  I've even cried with them.   I've gasped for air every time I hear "my child didn't make it" or "my child is an angel" and I think to myself how LUCKY are we.  How lucky we are to have our child still....thriving and living life to the fullest.  Going through it and coming out in the end with our little G.

I've met these parents and they still suffer.  Even with so many years that pass, they are never the same. They have a huge piece of their hearts that are void of a child they lost.  Time DOES NOT heal all wounds and no matter how much time goes by, it is still so painful.   I see it in their eyes.   I think of this every time I hold Gabriella's hand and as she falls to sleep.  This might have been us.  This might have been Gabriella's hand that I was holding as she was dying.  I could have been watching her take her last breath.....like to many of these parents do.  It is agonizing.  Can you even imagine the pure horror that you would feel?

It makes me angry.  Yet, I push on and I WILL NOT STOP until more is done.

Tomorrow marks the last day one year ago when Gabriella had her last day of chemotherapy February 7th, 2013.  A day I will always remember.  The last day that poison that was necessary to save her life entered into my daughters little body. We will celebrate.
I'm in tears today.  Crying for happiness.  Crying for sadness.




Wednesday, January 15, 2014

Fear....and CLEAR Scans!!!

"Fear, to a great extent, is born of a story we tell ourselves, and so I chose to tell myself a different story from the one women are told. I decided I was safe. I was strong. I was brave. Nothing could vanquish me. Insisting on this story was a form of mind control, but for the most part, it worked. Every time I heard a sound of unknown origin or felt something horrible cohering in my imagination, I pushed it away. I simply did not let myself become afraid. Fear begets fear. Power begets power. I willed myself to beget power. And it wasn't long before I actually wasn't afraid."  ~Cheryl Strayed

I hate ironing. (Geez, I feel like I'm using the word hate a lot these days.). But today when I was ironing my pants this morning while listening to my girls laugh and play while they got ready for the day, it was methodical.  I'd like to say I wasn't stressed or nervous and act like I'm so confident that the scans will be clear...but  there's always that lingering fear.
This is how the morning started.  These were the words I wrote and the one thing that strikes me as I sit here tonight is the word "fear".  The day started with the "5 more minutes" but not from my kids...from me.  After waking up to a slight headache from the subconscious stress that happens in my sleep which makes me clench my teeth together (yes dad, I should have worn my night guard), we start getting ready to face the day.  These days are never much fun and even with the ambien induced slumber the night before, sleep tries to elude me.  Yet, we carry on and face the day with the hopeful certainty that all will go well.  

Since Gabriella wasn't going to have general anesthesia today, she got to start the day with breakfast that daddy made.  It seemed like the start of any other day...chasing the girls around with tooth brushes, clothes, sox and hair brushes...something I will never stop appreciating.  Bridget was off to school (which is something she's not totally excited about these days) and being happily picked up by my friend Sandy to play with her buddies for the rest of the day so Adam and I could focus on G.  The drive up was great and we continued to prepare G for her MRI without anesthesia.  We've been talking to her about it for the last couple of weeks and were pretty confident that she could lie still the whole time.  Check in was easy...everything seemed easy...we had the top notch crew with a fantastic child life specialist and procedure nurse...right up until she handed the IV over to another nurse who thought she could get it in the first shot. I saw the missed IV coming but wasn't able to stop it before it happened. But the second attempt was successful and on we went. G got to pick out a movie (Despicable Me) that they would play in these special goggles and she was pretty excited about that. Adam was able to sit next to her during the procedure and they actually thought she had fallen asleep because she was so still and quiet during the whole thing. They asked her after why she didn't respond to the questions and she said she just wanted to be still. That what she was told and she made sure she complied.

I got the pleasure of visiting with Bill, our Team G Ambassador, who came just to support us.  I didn't realize how much I appreciated the support until we got to talking.  The conversation of "fear" came up and it made me realize how powerful our minds can be.  I realized this when G was first diagnosed and our world was flipped upside down.  I had come home to be with Bridget for the night while Adam stayed at the hospital with Gabriella after she got her port placed.  Driving back the next day, I was overcome with thoughts...incredibly crazy thoughts and thinking what really was reality.  I wasn't sure and couldn't wrap my head around anything that was going on.  My mind kept questioning reality and wandering...but I let it.  I ended up feeling completely panicked and it overcame me.... to the point where I should have probably pulled over and not driven.  But I needed to see my G.  Since that day, I decided to never let my mind and thoughts have that much control over me.  And it hasn't.  It's amazing what is actually true "when you set your mind to it", whatever "it" is...is possible.  I've always had this overwhelming fear of seaweed.  It's kind of funny.  When I was about 7 years old and in Jr Guards at Capitola, our first day out was an ocean swim.  I remember it very clearly.  Not excited about it but confident in my swimming abilities, I went out.  Not too far into the swim, I saw what I thought "a monster".  I knew it was seaweed looming about 4 feet below me but it scared the ever-living daylights out of me...to the point where I was yelling "monster" and climbing onto one of the guards paddle boards to get away from it.  Ever since that day, I have always hated the stuff.  I'm all about swimming "in" it and watching it from a far...but seeing it float on the surface brings me back to that day...that fear I felt.
After having my own children and going through G's treatment, my perspective and outlook has definitely changed.  I'm not as scared any more.  Every day, I overcome a little more and realize that I don't have to fear.  I can control it.  And I've proved it to myself a few times.  I've posted many times on Facebook about the whales right here in the Monterey Bay and going out to see them. So I'm back in the ocean (which I love but have always had a very respectable fear for) in a kayak with my sister and lord knows what swimming around below me searching for the whales.   We spotted them.  The experience of seeing a magnificent whale that was probably about 100 tons... was just incredible.  I'd like to say I was totally fearless...but there's a little worry there which mostly comes from being out in the open ocean with unpredictable wildlife all around....and being a mom with responsibilities and all.  It was an incredible experience and the sea, once again, captured me...but in a good way.  About a month later, I went back out.  This time by myself.  I wanted to capture that incredible moment again.  I wanted to experience the magnificence of seeing the whales and not being afraid.  I ended up paddling right into the middle of a kelp bed...and all of a sudden, I could feel the fear starting to creep up on me seeing that kelp linger below.  I paddled past it pretty quickly but I knew I had to go back.  So I did. I spotted about 10 otters lying around on the kelp and I watched them.  Sitting right in the middle of the kelp bed just watching...and realizing there was nothing to be afraid of.  It was healing.


SO....on with the amazing news....Gabriella's SCANS ARE CLEAR!!!!!!!!!!!!!  As a friend said to me today, that news will NEVER get old....never ever!!!!  (And I like to emphasize it with a few exclamation points at the end.  Heck, I could fill this whole page up with exclamation marks!!!!!!)
We met with Dr. Spunt who was taking over Gabriella's care while Dr. Marina was out.  She walked in the room with some apprehension and I was a bit worried.  While we are always expecting good news, we always have to prepare ourselves of the possibilities and don't want to be caught off guard.  She proceeded with the scans G had today and said "everything looks normal".  Just to make sure I heard her correctly, I asked her to repeat it again so I could take every word in.  "Everything looks normal".   We talked about G and how she was doing over all.  The one word we always use to describe her is "amazing".


Ready for her big day. 

Keeping busy as we wait.

Time to CELEBRATE!!

Dinner with our awesome friends Sandy and Aaron and their three little girls,
who my girls just adore!  Thanks for dinner guys!  

Right before going to bed, I look around the house that looks like a bomb has gone off and I take a deep breath...and smile.  All I ever want is for my kids to be happy and healthy.  That's all that really matters.  The mess can be cleaned up tomorrow but my family is safe...and I am happy.

THANK YOU EVERYONE FOR ALL OF THE TEXTS, PHONE CALLS AND POSTS TODAY!!  We very much needed the support and were so SO thankful for all of you helping us get through this!  

Tuesday, January 14, 2014

Time to write


I wrote this a few weeks ago...
I've been feeling very compelled to write an update the blog the last few months but as always, time has escaped me.  Keeping up on the blog always kept me up late into the night.  This is when the house is quiet and I can do my best thinking.  Of course the night time hours are when I get my best work done but there are so many other things that have needed my attention.  The emotions and words to describe our story aren't coming to me as easily.   I'm sure it was due to feeling much more vulnerable during G's treatment and I was just able to let it out.   Excepting them was what I needed to get us through.  But sharing these things now just puts me back into that vulnerable position...and I'm not liking the vulnerable feeling.

I often read blogs of other mom's and the journey they are on with their own child.  I know where it comes from...the ability to just write freely about your situation, your feelings and your child.  You don't have your child's health anymore, the one important fact that everyone asks you when you are pregnant..."what do you want?"  I just wanted a healthy baby.  So, what have you got to loose by writing?  I got bored of saying the same thing over and over again and hearing myself say it.  Childhood cancer sucks.  Let me rephrase that...childhood cancer SUCKS.  But it needs to be heard over and over again.  Until we can better this world for children fighting cancer, it needs to be heard.  Some of these stories and blogs are so incredibly painful to read. It just never seems to end for some kids and the battle they fight every day just has to continue.  It's incredibly heartbreaking to read especially for the kids who aren't given a chance.  Can you imagine?  The day your child is diagnosed is the day that you learn you will have to bury your child...your own child.  Sometimes I just can't stand it.  It's not fair.  And every day I look at my girls, my two precious girls...my survivor and my sibling survivor, I am so thankful for our story.  This is then where some of the mommy guilt kicks in.  Am I not playing with my kids enough?  Do they need more from me and am I too busy trying to save all the other children while on my laptop?  I don't know.  There are constant questions and always a better answer to them.  I just know that I'm doing the best I can.  But I will always try and do better.  

There are constant reminders of the emotional and traumatic year we went through.  During the year we put our head to the grindstone and did whatever we could to get our family through it.  I can only imagine it's like being a bull in a China shop. But the adrenaline is starting to wear off and I finally started to let my guard down just a little every day (except for scan days).  It's a good thing and it's a hard thing and something that's very hard to describe.  We didn't give ourselves much of a chance to be emotional and think about what we were actually putting our daughter through... and those things are trying to come up.  The thoughts are very real and very painful.  They don't come all at once because I feel if they did I wouldn't want to get out of bed.  They mostly come through when we look at past pictures of Gabriella during treatment.  They come when I look at the scars on her body, the little tips of her hair fried and bleached from chemo, or when she has an "owie" that can throw us into a panic questioning if the cancer could possibly return.  It also comes up when I'm at work, for obvious reasons.  Whenever I hear that my patients have cancer....or anything really... it just reminds me.  Of course, there are so many similarities.  I do my best to realize where its coming from but sometimes I'm not able to separate it.  The other day, I had to draw blood from a power port.  I had so much anxiety about it...and it wasn't even the actual procedure that was making me spin but the flashbacks that I've associated with this procedure. Twice a week, sometimes more, G would get her port accessed for blood work, chemo or anesthesia. I watched every single move her nurses would make and make sure they were doing it correctly....it had to be the right amount of time for scrubbing her port so she wouldn't get an infection, the right dose of medication and the right chemo...all the way to the right flush with no air bubbles. I'd watch the end of that port like a hawk and make sure it didn't touch anything. If it did, they would need to scrub it for 10-15 more seconds.  All while I was trying to get through the simple task of drawing this patients blood brought me back to those draining days in the hospital.  

I've decided that worrying never did anyone any good and NEVER changed the outcome. So, I've decided to do the best I can to plan for the actual day...the logistics...and let the rest just be.  But I can't help but worry.  

I know she's going to be fine. She is just the picture of beauty and strength. 



This past week, the hospital has kept us busy with the usual...Adam spent hours on the phone making call after call talking with the manager of radiology, the anesthesia department, and our new sarcoma doctor from St. Jude's (since Dr. Marina is having family health to deal with and Dr. Aftandillian is on maternity leave) to make sure things were going to happen when they needed to and how they needed to and jumping to management to ask for the appropriate changes.  It's actually been better, thanks to Adam.  He is so dedicated to straightening these major stressors and inconveniences out so hopefully all families can benefit from a better system.  The "schedulers" basically hand over the phone to their superiors when Adam calls and once again, the answer, "that can't be done" has changed into something that could be worked out.  

The issue this time is to keep Gabriella from needing general anesthesia and coaching her to hold completely still in an MRI machine for about 30 minutes.  She has amazed us this whole time and we have no doubt that she will be able to do it.  BUT, just in case, our doctor planned for anesthesia to standby just in case she couldn't.  We would put her under right away and get the scans done.  This sounded like to ultimate plan, right?  Well, not according to these schedulers...whoever they are.  Anesthesia doesn't "standby" on any cases.  They either do the anesthesia or they don't and this is what we were told along with a cold "sorry" to follow.  If she can't do it without, we will have to come back in 10 days (just because that is the next available day) to have her scanned under anesthesia.  My G is so compliant and I know she will be awesome.  Fingers crossed.


Back to the blog.....

All the thinking and processing made me come to a realization that writing in this blog has been amazingly powerful through this whole experience.  I miss it when I'm not writing but appreciate the fact that life is "more normal".  I know we're "out of the storm" so to say, but this journey is a lifetime.  It doesn't come to an end.   I sometimes wonder who is still out there and I'm so grateful for the messages every so often letting me know that you are still engaged...still following our journey.  I am so thankful for all of the support that surrounds us especially in the stressful moments.  Trust me, I appreciate it all of the time but I'll take it whenever someone remembers the struggles and takes time to acknowledge those.  I just hope I can do the same for others and hope that our words can help someone else in a difficult time.  There is so much more I want to say.  But for now, I must sleep and get read for the day's events.

More to come....