Why I Marched on Oakland

On January 21st, I marched in Oakland as part of the Women’s March on Washington. I know there are some out there who don’t understand what marching accomplishes. I don’t always know the answer to that, but sometimes you feel strongly about things going on in the world and you can’t sit there anymore and do nothing. Sometimes, marching just feels right.

It was a diverse group that marched in Oakland. It wasn’t only women; there were people of every color, size, shape, ability, gender, sexual orientation, and flavor. The reasons why participants marched were many and varied.

Jack and me at the march in Oakland. Photo © Rhea Avalos.

Jack and me at the march in Oakland. Photo © Rhea Avalos.

Here are the many reasons that I marched (with my son Jack) yesterday:

  • To show that I will not be a silent victim of Trump’s fascist agenda and toxicity.
  • Because every person who marches builds up a critical mass that results in 2.5 million people, which shows that we are not a small minority of people who are concerned with the dangers of a Trump administration.
  • To show support to every person who will be targeted and harmed by Trump’s agenda and toxic atmosphere for simply trying to live their life:
    • people of color
    • LGBTQIA people
    • women
    • immigrants
    • those in need of affordable healthcare and protections against pre-existing conditions clauses
    • children who deserve to go to school without worrying about gun violence
  • To feel solidarity with my fellow citizens who also want to build a better America–an America that is constantly improving and not trying to return to the past.
  • To be part of a movement so big that it cannot be ignored.
  • To show my children what freedom means.

I will keep marching because it means something to me and reminds me what it means to be an American.

Walking For Wishes

One of the hardest parts about this portion of the cancer journey is the lack of attainable milestones. There are three phases to Jack’s treatment regimen, and we’re in the third and longest portion – Maintenance. While Maintenance is supposed to be the least intense phase because the treatments are more spread out, they stretch out across two and a half years. Jack started Maintenance in October 2012, so our next milestone is…

March 15, 2015.

That’s a long way off. Right now it feels like the end of treatment will never come. It seems like we have an endless number of doctor appointments, medications, procedures, blood draws, and dressing changes ahead of us. And through March 2015 we’ll surely worry about fevers and infections and side effects and fatigue and keeping our jobs and paying bills.

Rather than focusing on the depressing difficulties ahead, we distract ourselves. One way to do that is to create other things to look forward to, which Jack has done through the Make-A-Wish Foundation. Last year he met with the Bay Area chapter of Make-A-Wish and submitted his wish to meet Lady Gaga (go check out his video!). We’ve been patiently waiting for his turn since.

Recently Lady Gaga had to cancel her tour due to her own health challenges. Not only are we sad to hear that she is having health problems, but we are bummed that the granting of Jack’s wish – a milestone we were looking forward to – will be delayed, as well. That wish means a lot to our whole family. It means hope and inspiration and excitement and happiness and light in the dark. It means some manner of relief, which is difficult to be found during a cancer battle no matter how many people offer support. I’m sure you can understand why we are a bit fixated on it.

With Jack’s wish being delayed and new waves of exhaustion settling upon us, we decided to distract and rally ourselves with a new goal: the East Bay Walk For Wishes. The Walk For Wishes is a 5k walk that raises money for the Make-a-Wish Foundation. The East Bay Area chapter hopes to raise enough funds to grant wishes to sixteen children – a total of $120,000.

Our team is called Jack’s Juggernauts and we are (at the moment) eleven people strong! Our team aims to raise $7,500, which is the average cost of ONE child’s wish. My personal goal is to get to $1500 and right now I’m only a little over $400 away from that. I know some very generous people!

Many of you have just finished your taxes and are either getting back refunds or bemoaning your tax bill. Either way – you can do yourself a favor for next year and get a tax deduction by donating to our walk. You don’t have to itemize for donations to count and, in many cases, your employer will match your donation.

If you would like to help us out in our efforts to rally our family and help out kids who are facing life-threatening medical conditions, please donate. Any amount helps.

Support Jack's Juggernauts!

The Beginning (My Submission For The LTYM Show)

I recently auditioned for the 2013 Listen To Your Mother show in San Francisco. I was not one of those chosen to join the cast for this year’s show (a mere 14 out of 54 auditioners), but I was happy just to audition and read my words aloud. Sometimes you don’t realize how powerful something is until you hear it out loud – and see others’ reactions to the words spoken. After reading my piece, the two reps for LTYM and I let out the breath we’d been holding. The reading was intense – just like the days described!

This is an edited version of the raw, harried one that was published over a year ago. I’m proud of how it turned out and wanted to share it even without the benefit of spoken word. I think that this story perfectly describes the ups and downs I experienced with Jack’s diagnosis.

The Beginning

It began when my 5-year-old son Jack seemed less energetic than usual. His temperature was slightly high, but he didn’t have a fever. He had aches in random parts of his body. Weirdest of all, he was becoming extremely frustrated with his favorite activity – Lego building – and seemed to be losing dexterity when trying to fit the pieces together.

While his symptoms were all minor and inconsistent, I couldn’t shake the feeling that something was off. I booked a clinic appointment to get him checked out.

Naturally, Jack perked up the afternoon of the appointment. I even thought about canceling the visit but my husband encouraged me to keep it just to be safe. I felt a bit silly – he was probably just fighting off a cold! I was totally going to be dubbed a paranoid parent.

“Doctor, my son can’t put Legos together! I think he might be dying!”

During the exam, Jack was his smiley, goofy self and barely seemed sick at all. It figures, I thought.

The pediatrician suggested that Jack was probably fighting something off, and maybe he was also low on iron. If I wanted, I could give him iron supplements.

He then turned to leave the room but glanced back at Jack and paused… “I know he has a light complexion anyway, but does your son look paler than usual to you?” I said yes, definitely, and I pointed out the circles under his eyes, as well. The doctor then asked if we wanted to confirm anemia with a blood test. Sure, I said. I didn’t want to have to come back in a few days if Jack still had this weird bug or give him vitamins he might not really need.

Much to my surprise, Jack didn’t get a finger prick like I did when they tested my iron during pregnancy. Instead, several vials of blood were taken in the lab. I thought it was strange, but I was too busy trying to calm Jack’s fears about the needle to ask any questions. And by “calm Jack’s fears,” I really mean “hold him down bodily.”

Despite the traumatic blood draw, we went home feeling somewhat reassured. The doctor had even told me I could send Jack to school the next day.

The next morning the test results were online before I even got out of bed. I opened them immediately…

Okay, so, hm… low neutrophils? What are neutrophils?

Decreased platelets? What the heck does that mean? And what is WBC Other?? Jack’s been trying to tell me for years that he’s an alien. Maybe he was onto something!

Or maybe that is just what happens when someone has low iron or is fighting something off. His white blood cells are at the higher end. And what do red blood cells do again? That’s probably not good that those are low… Okay, lemme go look at the iron test…

Well…his iron looks great! Yay!

But…uh…what does that mean for that other stuff then?

I then did the absolute worst thing a parent can do when faced with a medical mystery – I started Googling. And I’m sure you could guess what kind of results I got – Dr. Google said it could be anything from a staph infection to Lupus … TO CANCER?! My heart in my throat, I shut my laptop and headed to the phone – I needed to talk to a doctor ASAP.

The doctor wasn’t in yet so I spent some agonizing time waiting for a call back. To be safe, I decided to keep Jack home from school. While I was thinking about calling in sick to work, the doctor called me back. He told me that Jack was anemic, but not due to low iron. He wasn’t quite sure what was going on, so he had to speak with a specialist. He said he’d call me back.

By this point, my anxiety was through the roof. Thankfully, I didn’t have to wait long for the second callback. The doctor told me that Jack would be admitted for monitoring – probably overnight – and I needed to take him to Oakland where the pediatric specialists were located. Then he said something that really alarmed me:

“I’ll be watching Jack’s case closely, and here’s my direct extension in case you have any more questions…good luck.”

Oh God, I thought! This doesn’t happen! Doctors from big HMOs in San Francisco don’t give you their direct extensions! SHIT! Something is VERY wrong!

I hung up and buried my head in David’s chest to cry for a few minutes before taking an Ativan to control my panic. I then steeled myself to get Jack dressed and out the door without alarming him. I packed snacks, his magnedoodle, and a few books, and off we went.

Things are kind of a blur from there – stats and vitals were taken by a million doctors and nurses and interns. I think everyone except us knew what was going on with Jack – they just didn’t want to tell us until it was 100% confirmed. They did say that his blood test had caused some alarm because it appeared he had some odd cells and that could either mean they screwed up the test (which was the hope!) OR, if the test was accurate, he could have leukemia. They wanted to repeat the blood test to make sure.

At the end of that day, I was really hoping for Lyme Disease. My friend Becky said she was on Team Mono. I decided that would be okay – just please, NOT cancer. Please, something less dangerous than that.

The next day, it was confirmed that my son had Acute Lymphoblastic Leukemia and we had a 3.5-year battle ahead of us.

It was truly just the beginning of our journey.

Jack’s #ShineOn Journal

GapKids


This post is sponsored by GapKids. Check out all the fun Shine On activities at your nearest Gap store. For event dates and locations, visit Gap’s Facebook page and join the conversation on Twitter with hashtag #ShineOn.

*****

On Sunday Jack and I got up bright and early to drive down to The Gap in Los Gatos. As I mentioned previously, Gap is sponsoring some Back-To-School events using projects designed by craft blogger MerMag. The project of the day was a journal.

Jack got to pick out his cover cardstock, coordinating binding tape, a label for his name, and there were a variety of stickers and gem embellishments to choose from. He got right to work and didn’t stop upon completing the project itself – he decided he would start drawing inside of it, too! Then he told the project guides all about his sea monster.

The journal was a big hit. Jack’s been drawing since he was 2 years old, and he absolutely loves art, so I was happy to have this opportunity sent my way. This was a great way to get him thinking about school (he goes back in October!) in relation to something he already loves. He plans to write a story about the sea monster inside of the journal. I can’t wait to see what he comes up with.

If you want to attend one of Gap’s Shine On Saturdays event and live in a major metro area, check out the event locations listed on the Shine On Saturdays Facebook page. For those of you in California, there are a couple events this weekend (one in NorCal and one in SoCal) on August 25 from 10am-1pm in the following locations:

1139 S. Main St. @ Walnut Creek

Los Angeles: 2111 Glendale Galleria

*****

I was selected for this opportunity as a member of Clever Girls Collective, and the content and opinions expressed here are all my own.

Some Joy

Considering the last time I mentioned a house, we were going to wait to look for House #5, this may be surprising to hear, but we’re in escrow on House #6. Mmhmm.

Number 5 came and went and then came 6. This lovely place is down the street from what we’re calling Mold House. It’s also a million times more awesome and the BEST house we’ve seen (in about 60 total). We were more than a little surprised when our offer was accepted. We weren’t surprised at all when the inspection was fabulous. THEN…then the appraisal came back at a bizarrely low amount and the whole thing nearly fell apart with our financing. We challenged the appraisal and after waiting on pins and needles for three and a half days, we finally heard back – the appraisal was revised. The house was once again in our reach if the sellers could meet us half way on bridging the gap in financing. And they DID! Yay!

We’re not out of the woods yet. We need the bank to approve our new financing. But we’re damned close! We should know for sure that everything is a go next week. We assume nothing until then!

Amidst this house drama, Jack lost his first tooth – one on the bottom. For some reason this makes us absurdly happy. I guess because it’s a sign he’s growing up even while fighting cancer. He’s living! And he’s damned cute with a missing tooth. He has a slight lisp and has trouble with S sounds at the moment. It’s adorable.

I also had a wonderful Mother’s Day! David and Jack made me breakfast in bed and then we went out to have fondue for lunch. I loved the pampering. We had our celebration a bit early so that Jack could have fun with his dad the next weekend while David and I took off for Sonoma. I got an incentive trip through a contact at work – two nights in a resort hotel plus wine tasting, dinner, and brunch – all free. We sprung for massages, too. I felt like I got two Mother’s Days!

Life isn’t all bad right now. I’m glad I get some relief, even if it’s hard won!