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.

So Many Appointments

Jack has so many appointments. ALL THE TIME. Chemotherapy is only part of cancer treatment – there are a lot of extras that come along with it. Bonuses, if you will. (Ha!)

This is a snapshot of Jack’s January appointments – minus the things I’ve pushed off into next month, like the one that checks that his spinal fluid pressure isn’t damaging his optic nerve or the echocardiogram to measure organ damage from 3 years of chemo. It also doesn’t include the learning and psychological assessments he’s had at school this month.

January 2 – Ultrasound to check for damage to veins from Broviac catheter (looks good! whew!)

January 9 – Therapy

January 12 – Pediatrician due to dizziness, fatigue, headaches, nausea (inconclusive!)

January 15 – Lab draw (to hopefully explain dizziness, fatigue, headaches, nausea)

January 16 – Breathing treatment

January 20 – Lumbar puncture, oncologist exam, chemotherapy infusion

January 21 – Eye exam

January 22 – Dental cleaning (if his platelets and white blood cell counts are high enough)

January 23 – Therapy

January 27 – ADHD Assessment

As you can see, the longest stretch we’ve gone without making a trip to Kaiser was 7 days. BUT! Add on Desmond’s well-child check (January 5) and that stretch disappears.

I think we might spend more time at Kaiser than at home.

Three Years

Jack was diagnosed with Leukemia three years ago.

It’s been three years since I heard, “This is the best kind of cancer to have.”

Jack - first day of Kindergarten, before cancer.

Jack – first day of Kindergarten, before cancer.

Three years of worrying that he could die from a cold or infection or even just a side effect of treatment.

Three years of worrying what damage the same treatment that would cure him would cause. Heart damage? PTSD? Learning disabilities? More cancer?

He’s had 12 or so lumbar punctures in the last three years.
Plus Four surgeries – two Broviac catheters placed and one removed, and the placement of a PICC line.
Three infections – one likely viral, one due to a rare bacteria, one due to a common bacteria.
Four hospitalizations.
Countless toxic drugs, blood draws, dressing changes, line flushes, doctor appointments…

Jack has lived with monthly “Roid Rage,” as well as daily headaches, stomach aches, fatigue, trouble walking, numbness in his extremities, bone pain, skin sensitivity… His appearance has gone through drastic changes thanks to weight gain, weight loss, and hair loss. He’s dealt with acidosis and pseudotumor cerebri for much of the time. His personality has changed – I no longer describe him as carefree.

He has missed so much school in the last three years – half of kindergarten, at least a third each of first and second grade. We’ve had 504 and IEP meetings – and it’s only now, three years into this, that he is getting the proper assessments.

He has developed food aversions to the things we used to try to administer pills. He won’t touch applesauce or peanut butter anymore. He avoids yogurt and nutella.

It’s been over three years since he’s gone swimming. He will do anything to avoid an extra dressing change!

It’s been grueling for all of us. We are beyond tired, beyond shell shocked. We are different than we used to be. Cancer is a part of our life now. When treatment ends, it won’t go away.

Still, we are looking forward to the end of treatment – March 20, 2015. Maybe we will breathe more easily then.

Three years is too long to hold our breath.

Jack, age 8 - Christmas 2014

Jack, age 8 – Christmas 2014

A Wish Come True in Time and Space

After waiting nearly two years, Jack’s wish finally came true.

Initially he’d told Make-a-Wish he wanted to meet Lady Gaga. He made a dance video to the tune of Monster (which was the first time I’d ever seen him dance!) to send to her and he waited patiently for his turn. But he kept slipping further down the list due to kids in more urgent health situations and then Lady Gaga got injured on the road and canceled all her shows in order to get surgery.

In the mean time, Jack’s interests evolved and he became obsessed with Dr. Who. He will debate with you about the scariest aliens in the series and has strong opinions about which doctor is the best (the 11th Doctor, played by Matt Smith, is #1! Christopher Eccleston’s Doctor is #2 and David Tennant comes in at #3). Jack has watched Dr. Who almost every day for the past two years or so. He rarely watches anything else.

JackAge8

Doesn’t he look like a mini Matt Smith??

Last year we decided to give his room a little makeover since we wanted to build him a loft bed anyway. We did our best to turn his room into our (weak) interpretation of the TARDIS. We had limited money, but Jack was happy with the results. He’s got a good imagination, after all, and was able to fill in the blanks.

Not soon after, we talked about his wish and he decided he wanted to change it. He wasn’t very interested in Lady Gaga anymore. Instead, he wanted to meet the aliens from Dr. Who. Unfortunately, Make-a-Wish has a rule that the kids can’t switch from one celebrity wish to another (due to the long wait lists), so Jack settled on a more extensive room makeover that would add a console to his room and really make it into a TARDIS.

He submitted his new wish back in November and then we waited. During the wait, Jack made a lot of comments about how he wished he really had a TARDIS so that he could bypass the waiting altogether. Since the project was so unique, it took some time to find the right designer to work on it. Eventually they found Julie Giampaoli from Showcase Your Place, an interior designer in the area who was up for the challenge despite not knowing about Dr. Who!

She knows now!

Julie and Make-a-Wish pooled together some awesome resources and on July 22nd, the team arrived to get to work. I’ll admit it–I was more than a little nervous when they started drilling into my ceiling. But this was Jack’s wish and I just had to trust the process.

We were not disappointed. This video of the room reveal shows Jack’s stunned reaction pretty well:

 

And here are more extensive pictures of the process:

Jack LOVES his bedroom. He says it’s “too awesome!”

We are all so very thankful to the Make-a-Wish Foundation, their volunteers, and supporters for helping bring Jack’s wish to fruition and put some magic back into his life. We will treasure this experience for the rest of our lives!

TARDIS Room Makeover: A Make-a-Wish Story

What A Birthday Boy Wants

Note: This is not a sponsored post; however, it does contain affiliate links just for funsies.

Summer birthdays are tough – as I’m sure many of you know. So many of Jack’s friends are out of town on vacation or at summer camp, so we decided to schedule his party for a week after his actual birthday. He was not happy about having so little planned for THE DAY but we tried my best to make it a good day. He got cinnamon rolls and chocolate chip pancakes for breakfast, had a playdate with one friend who was in town and another with his cousin Isha, and we made a trip to Toys R Us (where he picked out a large rubber tarantula and some test tube aliens). It seemed to be a pretty good day to me, but he felt it was lacking – I’m hoping it was just due to pulse of steroids he still had in his system from the prior week.

This Saturday afternoon his birthday party will take place and we have a lot of people coming (way more than I expected)! This year Jack expressed his desire to celebrate his birthday at Rockin’ Jump, a place filled with trampolines and a foam pit. Ordinarily I wouldn’t spend this kind of money on a birthday party, but since my due date is quickly approaching, I decided it would be best to have the party outside of our house. Less cleaning, you know! So Jack gets his wish and will be joined by 14 other kids all jumping to their heart’s content for two hours. And then we will send them all home filled with cake…

One of the ‘perks’ of living with cancer (doesn’t that sound wrong?!) is that Jack qualifies for a free specialty cake through a program called Icing Smiles. Icing Smiles is a collective of bakers who volunteer to provide free specialty birthday cakes for kids facing critical illnesses. Last year he got a dream cake that was shaped like an Ent from Lord of the Rings. It was AMAZING:

entcake

This year he won’t get the over-the-top “dream cake” but he will still get something special. A baker located in Fremont (Anything Cakes) is constructing a custom cake that will be shark- or Dr. Who-themed. Jack will be totally happy with either so we are leaving it up to the baker’s discretion. I can’t wait to see what is created! A cake seems like a simple thing to a lot of people but birthdays have a lot more meaning for us these days and it’s awesome that the day can be made extra-special with things like this.

So…what else does an 8-year-old boy like Jack want for his birthday? His interests are definitely unique – he doesn’t like the usual stuff like Pokemon, Yu-Gi-Oh, Transformers, or Minecraft (in fact, he loathes them). Instead he wants things like this:

A “carnivorous rock” plush that he designed and GypsyGarden Etsy shop brought to fruition:rockdrawing

rock plush

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A creepy cymbal-playing monkey:

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Sticky slugs:

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Toys that “eat” things/people, like Clayface:

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And, just to throw us off, the random cute/normalish thing – a plush koala:

 

He’s also happy to get books and Legos, of course. He can never have too many of those!

I’m hoping Jack’s birthday party this weekend goes well and he has nothing but fun! The steroids will be mostly out of his system so he should be in a better mood overall.

And by this time next year…he should be DONE with chemotherapy altogether and be able to have a cancer-free birthday. WOOT! I know that’s what he REALLY wants!