The journey continues....

My butt hurts from sitting in classes and lectures all day.

My brain hurts from the knowledge that has been bestowed upon me.

My back hurts from lugging a 25+ backpack around the city; books, food, clothes and all.

My eyes hurt from looking at a computer screen and trying to absorb all of the information given to us in the last few weeks.

And my heart hurts from not being with my girls and my husband.

…But my life is full.  And for that, I am so grateful.  

I’ve made a promise to myself long ago that I was not only going to let people into our journey, but that I would continue to share the experiences that we have and will face throughout the years.  Childhood cancer is not as simple as a viral cold.  It’s not something that you get, fight, become immune to, and fades away.  No. It is a lifelong experience.  It’s one that does not simply go away when the active disease process ends.  It is a constant worry, “is it back, have we relapsed, what is that bump, that bruise, are we doing enough to fight it?”…and for some, the constant reminder that this insidious disease took their child from them. 

I’m not sure how many moms have been lucky enough to have been in my shoes…to have had a nursing background and to have experienced emergency/trauma situations, and the pediatric acute care setting prior to my daughter being diagnosed. Then to have a survivor emerge out of all of the chaos and to be able to continue my education so I can assist others through their journey.  I feel incredibly lucky….and incredibly blessed.

These past couple of days and the last few weeks have been a daunting task. Starting graduate studies….organizing, processing, scheduling, more organizing….trying to fit back into the world of school and the world of parenting and all the other worlds we have to juggle.  It is safe to say that my worlds have collided…and I’m trying my best to keep them all situated, organized and in their little boxes.  As my husband Adam would say, “In a bag, in a box…in a box, in a bag”.  I like things organized.  But as I know, it is NOTHING like facing a new childhood cancer diagnosis and it is NOTHING like being told that there are no more options.  This is voluntary and I am honored and grateful for the opportunity to pursue my passion.

I bury my face into my hands as if to stop my world from spinning…and take a moment to make sure I am doing the right thing.  Then I realize, there’s nothing more I want to do (…besides the obvious).

There was a point today when I was in between classes thinking., “oh my god…this is going to be a lot of work.  Can I really do this? Can I really go back to school, balance my family life, work, friendships, and all of the rest?  Wait, of course I can.  I WILL NOT give up”.  The thought of not doing it quickly subsided when I took myself back to the early days of Gabriella’s diagnosis and realized, I absolutely can.  My mind won’t let me linger for more than a few seconds on those early days.  Just remembering bits and pieces is plenty to keep me motivated.

I received this gift from my girlfriends on my birthday last year  Today I look at it and realize how spot on my friends were when they created this for me.  My loves, Adam, Gabriella, Bridget…and Team G.  My life.  All of them.  I gleam when I wear this necklace.  I wear it with pride.  I want everyone in the world to know where we’ve been and where we are now. 

And Team G….oh Team G.  I have so much thanks to give (that is for another blog post).  As I’ve said from the beginning; Team G is all of you.  It’s not me.  It’s not my girl.  It’s the basis that we all came together…to fight one cause.  I love where we’ve come from…and I love where we’re going. 

There will be tears along the way.  And pride.  And gratitude.  And I am So.  Very.  Thankful. 

The "white blob"

It's not cancer....(most likely). But what is it?  

So....deep breath..... G's oncologist called today. Said they found a "spot" on her spine from Monday's scans.  Not sure what it is but they are talking about a rescan in 3 months. 

I was on my way to work and received a call from the hospital.  Seeing LPCH on my caller ID was nothing unusual since I was expecting a call from one of the foundation directors.  But we normally haven't received a call about G's scans a few days after unless to schedule the next appointment.  She wasn't feeling well the day of scans and running a small fever but had turned around after a rest day the following day.  

After Dr. Aftandilian and I talked shortly about how G was feeling, she told me that they found something on the scan.  A "spot" on L5 in the vertebral body.  Looking back, it was there 6 months ago on the last scan (and possibly there a year ago) but it wasn't remarkable at that time. Now, its a 7mm spot that is not deniable on her MRI.  

The panic didn't and set in until I called my manager and told her the call I had received. I couldn't help but let the tears roll down my face and not deny that I was scared. I am scared. We knew the next step was to meet our doctors in person to discuss options, possibilities and a plan of action. Luckily we were able to arrange that today. 

So here's the good news:

We (they) don't believe it's cancer for the many reasons that we discussed at our meeting today. 

-It's not the typical pattern of a reoccurrence.  

-It's not common for rhabdo to recur in the spine.

-There were no other questionable spots found in anywhere on her MRI or on her chest X-ray. 

-The borders of this thing..."lesion"...is circumscribed meaning it is not abnormal (as a malignant tumor would be) and is round in appearance. 

-It was not in the area (or field) where she had her radiation meaning it is not likely a secondary cancer from her initial radiation therapy. 

-She has no signs or symptoms of pain and very little problems in this area.  

And here's the uneasy news:

-A biopsy in this area is very invasive and not easy since it is in the vertebral body (google it and you will see what I mean). They doctors would have to go in from the from the front of the abdomen to biopsy it if that's what needs to happen. 

-We don't know what it could be 

-It's something on her spine and anything on her spine is very suspect for further (agonizing) evaluation.  

-Unfortunately we need to wait 3 months so we can evaluate the speed of growth and analyze if this is something that will impede on her spinal cord...and what we need to do to fix it. 

-We will repeat an MRI of the spine at about 3 months and will perform further testing as indicated at that time.

-Whatever this "lesion" is, it has slowly but surely grown.  If it grows further, there are probably surgical procedures we need to consider in order for the spinal cord not to be harmed and normal function to continue. 

We discussed the possibility of another MRI, a PET MRI, a regular CT, a PET CT, and possibilities of a biopsy. The goal is to do the least amount of harm that we can possibly do but serve our due diligence in figuring out the seriousness of this "white blob". 

Here is the picture of the MRI from Monday. My finger is pointing at the white spot in the L5 vertebral body on her spine. 

I could hardly breathe today.  I want to believe that it's not cancer. I want to believe that with all my heart. And we were pretty assured that it's not. But as a cancer parent, you know all too well that you don't take ANYTHING for granted.  Damn it, I'm thinking positive but I as sure as hell I don't want to be caught off guard again.   

Just the other day, I was telling a close friend about the mint in our garden. It was a symbol to me. I had ripped it out one day during treatment because it represented G's cancer. I hated it. It was a weed. Ripping it out was therapeutic because as long as it stayed away, G's cancer would stay away too. Well, last month, the mint started growing again. Then scans were coming up. I'm not a superstition person but it affected me. So my friend came over with weed killer and champagne. 

I am so thankful for the love, family, and friendships that has surrounded us through this journey.  I am so thankful for the friendships that we have created and found and I know we will be ok.  Gabriella will be ok. 

For the next three months, we will be living life. Enjoying our vacation. Enjoying summer and all that comes from it. Enjoying planning our return to the girls school in August and starting at my school in September. We will be raising funds for pediatric cancer. And we will be doing our due diligence as cancer parents to our daughters...both of them. 

 

Sincerely,

Life from a cancer mom. 

Next stop...

Next stop...UCSF for the Acute Care Pediatric Nurse Practitioner Program and a Masters degree. I am ecstatic, over the moon, scared, wondering how I'm going to do this...but I will.  I have the determination to make it happen.  Plus, I have a loving and supportive family to get me through it.  We have come so far from the beginning of the journey and it drives me to continue sharing, continue fighting, and continue doing what I can to help stop childhood cancer.
Here is the essay I wrote for my application.  I'm sharing this with you all because....well, I've been trying to share as much as I can of this journey.  It's been a crazy experience and one that has brought me so much awareness.  I'm hoping it has brought awareness to everyone reading it.  I'm also asking for funding assistance for my education.  This is not easy to do...at all.  I don't even like it.  I will ask for funding for pediatric cancer until the cows come home.   But to do it for myself, not so much.  I hope I've compelled enough people to believe in our story, our fight and the continuation of me, as a nurse, to assist those families doing something I love to do.  So, here goes....  my funding page is: https://www.gofundme.com/27zgjhg
"I knew from a young age that I wanted to pursue a career in the field of nursing.  Growing up with three role models in my life, my mother being a nurse practitioner, my father being a physician and my stepfather, a dentist, I was inspired by the science of nursing and medicine.  Not only was I influenced with these career paths, I was also inspired by my families commitment to the underserved.  Through this passion, I developed my own dedication to serving the underserved and pursued many activities volunteering to care for vulnerable and diverse populations.  Continuing my nursing education as a nurse practitioner after my undergraduate studies in an area working with underserved populations meant acquiring further skills, gaining more knowledge and becoming more autonomous in my field of choice.  This has been a continuous goal of mine since I chose nursing as a career.

Early in my schooling, my cumulative GPA reflects early academic challenges that I worked relentlessly to overcome.  Since my first years as an undergraduate, I evolved and developed excellent study habits as I prepared for completion of my nursing degree.  Through work in nursing school and continuing on to advanced graduate studies at San Jose State, I maintained an excellent GPA.  I’ve learned lifelong study skills that will assist me with my future endeavor as a successful graduate student. 

My experience as a registered nurse has been more than gratifying.  I spent my first few years in emergency/trauma departments including work with the pediatric population, which taught me not only physical aspects of treating my patient but psychological aspects in treating the entire family.   I also learned to recognize the unique needs of children and families of impoverished backgrounds.  This experience I have been able to carry throughout me in my practice. In the setting of critical situations, I’ve gained the experience to be flexible, a quick learner adapting to difficult situations, and enjoy the challenge of diverse situations.  Although I love the nursing field, I felt it necessary to make a change and try a new setting through acquiring my real estate license. This was a successful venture learning new business skills and conducting real estate transactions. Although I enjoyed the challenge, nursing was my calling and I returned to start my professional development in the intensive care unit.

Initially, my goal was to become a family nurse practitioner and work in a clinic to serve a diverse and vulnerable population.  I started graduate work two separate times to realize this goal but life had other plans for me.  My 4-year-old daughter was diagnosed with a rare cancer called rhabdomyosarcoma.  Nothing can prepare one for this journey but luckily, the outcome has been positive.  At the moment of my daughter’s diagnosis to the time of finishing treatment, everything became uncomplicated.  I’ve been touched and inspired by pediatric oncology patients and the families I’ve encountered.  I finally realized my true potential and lifework for my nursing career to become an oncology pediatric nurse practitioner.   

Through my journey, I learned the disparity and vulnerability of the pediatric cancer population.  Children with cancer are considered a minority and therefore only receive 3.8% of government funding allocated to research.  With the help of other cancer parents, I started a 501©3 non-profit foundation to provide support and funding to pediatric cancer research.   This comes in the form of care packages called Hope Totes to newly diagnosed cancer families and funding pediatric research to local institutions including UCSF Benioff and Lucile Packard.  Our total has exceeded $93,000 in direct research funding.  I am proud to be the founder, Chief Executive Officer with a motivated Executive Board of Directors.  With all of these accomplishments, learning proficiency in Spanish is also high on my list.  Not only will I complete my statistics this upcoming semester, I will be evolving my skills in Spanish because this is an important aspect of providing accurate health to underserved populations.

Our foundation has been an important aspect to healing.  Now, it is time to take the next step and become proficient in this field in order to become an advocate and influential resource for children battling cancer as well as the families who travel this journey.  With my strengths being an achiever, a learner with a great desire to continuously improve my skills, and the ability to individualize people and situations, I will be successful in the pediatric nurse practitioner program and my future role as a pediatric oncology nurse practitioner.  I’ve proved to be resilient as a nursing student, a cancer mom, founder of a nonprofit organization, and overcome whatever challenges come my way. 

My professional goal has always been to attend the UCSF School of Nursing, known for dedication to the health care profession, serving the underserved and vulnerable populations, rigorous curriculum in mastering core nursing knowledge, and student support for success in the program.  I am confident that the program will advance my knowledge and skill to function as a highly competent pediatric nurse practitioner in the field of oncology delivering quality health to infants, children, and adolescents."

Restless in Seattle

I know I've been absent from this blog for a while...a long while.  I have to admit, just the thought of coming back here after being away for so long makes me break out into a cold sweat... and even makes me a little nauseated.  There's not much more I can say that I haven't already said.  But something inside me stirred this past weekend.

Adam and I just attended the annual Firefighter Stairclimb.  This is an amazing event done by the The Leukemia Lymphoma Society every year where firefighters across the world come to Seattle to climb 69 flights of stairs in the Columbus Tower .... all while wearing their heavy gear and breathing bottled air... face masks, helmets and all.   This ads up to be about 60 pounds of total weight (not including their body weight ;-)).  The first year we brought Gabriella and Bridget up and the last two years, the girls have stayed at home with grandparents while we've gone to show our camaraderie.  We have consistently submitted honorees including our daughter but this year, we submitted a few more children to be honored..and remembered during the day's event.  LLS posts pictures of these honorees in the stairway while the firefighters embark upon their climb....under 20 minutes for the faster ones and up to, sometimes more than an hour for the slower climbers.... all along encouraging the participants and reminding them that they have willingly chosen to climb in support of those who have not chosen this battle.  It's a somber memory for each and every one of them as they make their way through the stairs.  I am lucky enough (or unlucky...depends how you look at it) as a parent of an honoree to be escorted to the top and watch as these firefighters finish their climb.  And I love being there to cheer Adam and his crew members on.

LLS has a dedication wall so I made my way over to write our honorees on the wall.  I started writing the names of the children we submitted to honor; Gabriella, Samantha, Tianna, Matthew, Lauren, Sofia....then I started to write down the names of the recent children we had come into contact with; Ava, Sofia, Luke, Massy, Giselle.  Then I though, there are all of our inspirations on the Team G website so I continued to write their names down; Nick, Ben, Alex, Aurora, Ahmie, Brooke, Hadlie, Jake, Ginger, Charlie, Carter, Sammuel, Sage, Jalen and Breanna, Taliyah, Pablo, Mya....  And then I got exhausted just thinking of and trying to remember all these names.  There were moments of just feeling overwhelmed and I did my best to take it all in.





Leukemia has hit me especially hard this past few months when my good friend's daughter Samantha was diagnosed.  Then another friend, and another acquaintance, another friend of a friend diagnosed  all within days and months of each other.  It feels like everyone around us is getting diagnosed with cancer...pediatric cancer...which was once so rare in my life.  Even at work, one of the nurses said to me recently, "everyone has cancer".  Yes, I feel this way too, even though that isn't the case.  It is just our lives.  I've done my best the last three years to "work through" some of the stress and the almost impossible journey that we traveled but I've realized I live so much in the present.  It's joyous to be here.  I have my two daughters, I have my families health.  That's all I ever wanted.  Do I have to relive the trauma which was taking my daughter and my family through treatment?  A question that I still ponder and probably always will.

Which brings me back to this blog... this damn blog...this life saving blog.  I haven't yet been able to go back and read it.  No way.  Can't do it.  I end up with a lump in my throat and tears in my eyes.  Sometimes I think I can even tell my story without having tears in my eyes.  But I can't.  Especially not this past weekend.  And I have a survivor.

Always a highlight of our trip...meeting with Dr. Doug Hawkins,
Seattle Children's Hospital and Children's Oncology Group.

As many of you close to me know, I'm currently in a statistics class.  Online.  And it's not always fun. Most of the time, it sucks.  I just applied for the pediatric nurse practitioner program at UCSF but I don't know if I've been accepted yet.  Yes, I will specialize in pediatric oncology and I will continue my journey and mission to fight pediatric cancer, with everything that I have in me.   I ask myself, why the hell am I doing this?  I often think, I could easily slam the computer closed, throw my TI 83 Plus calculator in a drawer and just be done.  Then I look at my children, all those precious children, the ones that have fought, the ones that haven't survived.... all of them.  And I keep going.