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I wasn’t going to talk about this stage in my life with my clients. It was going to be something you maybe saw on my instagram feed and wondered about, but until now, I don’t think I realized how much it has affected my outlook and my determination to offer my heart and soul to my profession.  In a way, I think you should know where I’m coming from.

On May 9th, 2016 our son Frankie had a seizure.  Up to that point, he hadn’t shown any signs of being unwell, so it was a shock.  We had celebrated his sister’s 16th birthday the night before. I had dropped my Dad off at the airport that morning. Daycare called to say something had gone wrong…. 2 hours later we found out our son had a huge mass in his head. We were brought to Kaiser Oakland for further evaluation. They had no idea what it was and were actually optimistic that it was benign.

Two weeks after the tumor was found, our neurosurgeon performed what’s called a total resection on the lemon sized tumor (it was completely removed).  It was an agonizing nine hour surgery to say the least.   After much testing and retesting, they determined that it was ATRT, which is really not a good diagnosis. He recovered so well from the surgery and had no side affects (many kids wake up from that surgery with partial paralysis that may or may not get better). Within four days we were home with him, blowing bubbles and trying our hardest to see the light at the end of the tunnel.  Our tunnel was to be a year of serious cancer treatment that had a fifty fifty chance of curing him.  We’ve learned since that his tumor is of a less aggressive sub-type and that his age (over 3) at time of diagnosis is weighing heavily in our favor.

Our little boy has been through 2 induction chemo rounds (a cocktail of about 5 chemos in one month cycles), 6 weeks of focal radiation to his tumor bed (very near the front of his head), and 3 stem cell transpants (each one month long with a very high dose of chemo followed by infusion of his own stem cells to rescue his body).  Some treatments were delayed due to low white counts but we did our best stay focused on the now and count our blessings.  He had a several surgeries along to the way to place ports and test spinal fluid.

So because I’m a photographer and not a writer, I’ll explain our year in pictures and try to convay to you along the way I am not a hero, I’m not “strong,” and yes, you could have done it too.  There was no choice, we love our kids to the core and we do what we have to do.  Nothing phases me any more because this rocked me hard and it made me thankful.  I didn’t come out stronger, I came out weaker in a sense.. I don’t tolerate the small stuff anymore.

Note- I wasn’t the best photographer when it came to documenting during this year (my phone was all I had the energy for)

On the right is my Mom, on the left is my husband’s Mom.  They were both ICU nurses at one time and were an amazing support for us.  They alternated weeks coming down for 3 days at a time to help us in San Francisco. Behind us is UCSF where we transferred for all cancer treatment. 

This is Frankie during his first week. He was ALWAYS smiling and charming the nurses. He was spoiled with toys and loved all the attention he got.

After each Chemo round, he needed to have his hearing tested.  Some of the drugs cause hearing loss.  We lucked out.

This is Frankie’s last photo with our dog Ivan. He got bone cancer and died just weeks after we had to leave for the hospital. The crappiness of our lives was almost laughable at this point.  Sometimes we just had to throw up our hands and wonder why we had to deal with some of the stuff that was thrown at us.

This is Frankie playing in the halls.  The complexity of having a three year old hooked up to an iv pole is pretty astounding but we managed to get through it with only one broken chemo line.
He was nauseous many days but he always kept his sense of humor. 
We tried go home to Santa Rosa a few times but learned quickly that it wasn’t a good idea.  If he got a fever it was straight to the er then down to UCSF in an ambulance (after waiting 8 hours for one to pick us up). He didn’t mind any of it of course, the ambulance was fun!He’s a super hero in just about everyone’s eyes.We stayed at Family House, which was one of our biggest blessings.  We met families with similar problems and we had a place to stay on the nights we just needed to be close to the hospital (which was most of the year)We became very close with a family that was fighting a similar battle.  Billy was a calm and gentle presence that Frankie loved.  Billy died and we still can’t seem to wrap our heads around why this has to happen to kids.During radiation Frankie was expected to be tired and need to rest.  No way he decided.. we joined a play gym and he played as hard as he always did.

Stem Cell transplant is pretty uneventful actually.  It’s a simple blood transfusion that takes about 30 minutes.  Seven doctors and nurses stand by to make sure it goes smoothly however. The value in those cells is our son’s life. Our first Basesball game together.  Family House sent us to all sorts of wonderful places!

It was rare that he admitted to being tired but we forced him to take a nap every day.

This was the day after the high dose chemo for stem cell transplant.  He pounded those drums. 

After his third stem cell transplant we were able to go home and recover.  We got our new dog Max on Frankie’s fourth birthday. 

We had a Beer Run fundraiser for Family House to show our appreciation.On one of our first days after his T Cell count came up, we went on a hike. He still talks about this hike like it was the best day ever… and it was. Frankie before surgery (it’s the big white blob)

Frankie continues to show no signs of disease (we have to be on our toes for the next 5 years, but remain positive)

We celebrated with trip to Mexico last summer. He ordered room service

He has four cousins within 3 years of him who all came!We attended Camp Okizu for pediatric cancer survivors. Not exactly the club I wanted to join but the support is needed. We got rid of all the medical supplies that were crowding his room and repainted everything.His hair is growing and he’s still as silly as ever.

 

And so we move on.  We are still traumatized and are changed forever but as we go forward we count our blessings and try our best to live in the moment…it’s all we’ve got.  Hold tight to your loved ones… and get a photo taken to capture who you love!

 

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