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  • Writer's pictureheatherfrost

joy and heartache

I apologize again for a delayed update. I thank you for your patience with me and my mental health. It takes a lot out of me to sit down and share our life with you all. But your love, kindness and support is what continues to bring me to do so.

Hiro's personality is blooming. I have never felt more proud of another human being in my entire life than when I watch his little mind and body at work. He is smart, we are calling him our little engineer these days (though he can be whatever he wants one day) but he has a huge interest in wheels. He will sit and spin a wheel for a good 30 minutes and not get tired. Every toy you give him he checks first if it will spin, then he carefully analyzes the toy as a whole. Almost as if he is trying to figure out what it was created to do and how to execute that properly. It is truly enjoyable to watch. He and I make 2-3 trips a week to go to speech, occupational, physical and audio verbal therapy. He has been making huge strides in all of them. It is refreshing to see him start to do things other kids his age are doing. He is still developmentally behind, understandably so, but he is full of new surprises each and every week. His strength and resilience shines on daily and I could not be more proud of him.

He says "da-da" and recently has started saying "ma-ma". He is clapping (very random moments will he add in his clap). He makes a noise that is really is almost like he is just constantly rolling his 'r's like in Spanish. It is the cutest thing. He got his first haircut. He loves to swing and go on walks in his stroller or ride in his push car. He really wants to crawl, he face plants most of the time when he tries but we are working on He reaches his arms up to us. Ugh when he reaches for me my heart melts. He gives the best snuggles.

And he will be a year old next week. (October 16th)

A whole year.

A year of love and joy that I have never known.

A year of heartache and sorrow that I would never wish upon anyone.

A year of Hiro and all that he is.

He is enough.

He is not defined by his sickness.

We adore him for who he is and not for what he can or cannot do.

He is my heart in human form.

He is kind and sweet, smart and funny, loving and full of life.

He is all that his name means, abundant.

He is this and so much more and I am grateful for every single day, every breath that we get to spend with him.

What a gift to be his mother.

(I know Jon feels the same about being his father.)

Recently we have been in a waiting game. They found more masses on his liver a couple of months ago and his bloodwork has been up and down. They were worried that relapse was occurring and that we would be down another difficult road of treatment and surgeries. It has been hard waiting and knowing that this could happen.

But, I am grateful to report that his biopsy and bloodwork both came back looking good this last round of testing! There is nothing at the moment that is pointing to his cancer growing.

The masses are still there so we will monitor them on ultrasound to make sure they do not change in size and we will continue to do bloodwork to ensure there are no major jumps there either. We can breathe a little bit more and that feels really good.

We do have another intensive hearing test coming in November. He could lose more (or all) of his hearing up to a year after his last round of the specific chemo medicine that he was on. His first test showed that he needed hearing aids so he has been getting used to wearing those. We are hoping he doesn't lose much more, but we will do whatever we need to for him to have the best life he possibly can no matter what.

We are grateful for the good news of Hiro's scans and bloodwork and we are hopeful that his body can start to move past this difficult season. Not that navigating an almost one year old with hearing aids and a feeding tube is easy...but it is an easier season than it was earlier this year and for that we are thankful.

The heartache part of this blog post is for the Brouwer family. This past Friday, October 7th, Abi Brouwer passed away. Abi has been fighting a horrible cancer for sometime now. She has fought her absolute hardest and both her and her family have remained inspiring through everything. Our hearts are heavy with them in this time as they celebrate the 18 years of life that Abi lived.

We received a photo of her a few weeks ago in her Hiro shirt, I sobbed. Not as much as I have cried over her passing, but a lot.

As a cancer fighter myself and a mom of a cancer fighter...I'm heartbroken and I am tired. It is unimaginable how hard this road is. It is a road I do not wish upon anyone. A road I wish the Brouwer family never had to be on.

Abi's life is one that has touched the lives of many and inspired families such as ours who are also on a difficult road. We are so glad she is free of the pain she was in and our hearts are with the Brouwer family during this time.

I picture Abi running freely in the flower fields of heaven, no pain, no tears, no tests...just getting to be all who Abi is.

In loving memory of sweet Abi...

Much love to you all, thank you for being with us on this difficult journey.

Heather Frost

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