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  • Writer's pictureheatherfrost

so many tests

Do you remember the feeling you would get when taking a test?

For me, it would be extreme anxiety followed by a lot of fidgeting and fast breaths.

And then the anticipation for your grades...what a terrible time.

Tests and I have never been friends.

Those were my younger years though, when tests were simply scores based on what I had or hadn't retained in a class that had nothing to do with the harsh realities of life.

They were nothing like the tests I face today.

No, these tests are ones in life that do not come with study guides or preparation.

You have no time to figure out anything, all you can do is push on hoping that relief will come soon.

And sometimes relief does not come.

Or sometimes we redefine what relief might mean because life has changed our perspectives completely.

These past two years have honestly felt like waves crashing on me. And every time I try to go up for a breath of air, for relief, another wave hits and I am drowning again.

A quick summary of the past couple of years:

  • Close friends un-friended me for reasons I still am unsure of to this day; that hurt worse than any breakup I had been through

  • I was fired from a job I was at for over 8 years when I was very sick and pregnant

  • Due to me losing that job we could no longer afford our first house we lived in and I was too sick to find/get another job

  • My grandpa passed away suddenly 2 months before Hiro was born

  • My pregnancy only got worse as I entered my third trimester and ended up in the ER most nights and eventually admitted leading to them having to do a c-section because I was quickly going down hill

  • Obviously was excited to meet and have Hiro with us

  • We lived with my kind parents for 6 and a half months before moving into our new home

  • Hiro had hernia surgery at two months old

  • I caught covid two days before Hiro's surgery and it put me in the ER a couple of times

  • And then March of this year hit - when Hiro was diagnosed with cancer and this horrendous journey began

It is funny, all of the situations that happened before Hiro was diagnosed seem so small in comparison. They still hold pain and hurt, but nothing like what these past 7 months have held.

There is no adequate way to describe how this has felt emotionally, mentally and physically. I would never wish this upon anyone.

But as hard as it has been for us, it is nothing compared to what Hiro has gone through.

A rare cancer diagnosis that has resulted in 3 surgeries, 6 rounds of chemo, multiple tests, bloodwork, and much on a 10 month old.

The chemo caused hearing loss. He just got his hearing aids, he is so handsome in them if I do say so myself. I am thankful for the technology that can help him but I would be lying if I said it isn't hard to have another big reality to figure out and navigate.

He is in 4 different types of therapy to help with his developmental delays. He has been doing so amazing and is making huge strides. As exhausting as it can be to take him to so many appointments, it is worth it when I see him re-building strength and growing.

There is more hard news though...

Based on a couple rounds of bloodwork that has started to rise plus his CT scan last week, there is speculation that his cancer might be growing.

This is obviously devastating to even think about.

Right now we are in a heart wrenching waiting stage. We are waiting for the results of his MRI that he had done this past Thursday to tell us more.

Oddly enough his bloodwork from Thursday dropped a little, it could be a hopeful thing but it also could not be.

So for now we wait.

We wait for more test results on an unwanted luring of unknowns concerning his cancer along with having to daily navigate having a baby with hearing loss/developmental delays.

It is a lot.

I am tired.

Jon is tired.

There is so much Hiro is enduring. And he does it with a smile on his face.

A smile that rejuvenates Jon and I just enough to get through today.

We know tomorrow is coming and tomorrow will be difficult in its own ways, but today is hard enough so we will be present here and take tomorrow on one smile at a time.

We adore our son and we will do anything we can to give him the best life possible.

He deserves that.

So we carry on.

Also, September is pediatric cancer awareness month. Gold is also the color that represents pediatric cancer. There are so many families dealing with the unimaginable and families who have lost their little ones to the horrific hand of cancer. These walks can feel very lonely and what we see happening to our kids is a pain that is indescribable. But in the midst of that all there are people like Cynthia.

Cynthia lost her beautiful daughter Ava 10 years ago to brain cancer. Ava was 5 years old when she passed.

Cynthia took her hurt and the story of Ava and turned it into something beautiful called The Gold Hope Project. They are a non profit who educates people and brings awareness to pediatric cancer and they also support and raise funds for pediatric cancer research.

They also provide free photography sessions for families dealing with childhood cancer. It is such a sweet gesture of kindness to families such as my own. To document our little fighters at any stage of their journey. And to not have to worry about a price tag is huge for families with significant medical bills.

We were blessed to meet Cynthia, she was so kind and there was a sense of relief to talk with someone who understands the hell we are in. On top of that she blessed us with beautiful photos of our family and our sweet Hiro.

Thank you Cynthia, from the bottom of our hearts, you are using Ava's story to bless so many people. <3

Please consider making a donation to this beautiful non-profit. People like Cynthia are making a huge difference in the lives of others and the world of pediatric cancer!

Become a part of their story here:

Here are some of the beautiful photos from the session with her...

Thank you all for the continued love and support. I will update soon when we have more results and answers.

Much love,

Heather Frost

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