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  • Writer's pictureheatherfrost

cancer is a marathon

"This isn't going to be a sprint with a short beginning and end, this will be a marathon - a long and difficult experience."

I remember Hiro's kind doctor telling us this at the start of his journey. Doing her best to articulate what was to come to help us try to mentally prepare.

I will never forget March 1st-7th. It was the most traumatic week of our lives. We did not have time to process one traumatic event before the next occurred.

It has felt like one long, since. But it has not been one day, we are now 6 months into this hell. And even though the initial shock of the diagnosis has worn off a bit, each day still holds its own difficulties.

Hiro has had 3 surgeries, been through 6 rounds of chemo and has done an endless amount of bloodwork/scans/tests.

He just turned 10 months old.

Even after everything he has endured he still manages to smile and find joy in each day.

I am so proud of who he is, not for what he can or cannot do but simply because who he is is enough. His very existence is a gift and he will never need to prove that to me and I hope he can know he does not need to prove it to anyone ever.

We currently are in a stage of post chemo reality. We knew that there would be long term effects from the treatment that would save him. One of the big side effects from his specific medicine is hearing loss.

At the start of treatment they had done a hearing test and his hearing was perfectly normal.

But post chemo we have learned that he does have hearing loss and he can lose more up to a year after his last round of treatment.

It sucks, yes. We always want the best for him. But we also would rather he lose hearing than to lose his life. So for now we try to celebrate that he is with us still and that we can hold him. And we will do anything to give him the best life we possibly can with everything he has going on, including the hearing loss.

He was recently fitted for his hearing aids. So that adventure is soon to come.

He was able to get his Broviac Central Line removed from his chest, this is huge as now we do not have to worry about a high risk of infection to his heart and he can enjoy being fully submerged in water again which was his favorite thing before everything happened. Hiro loved his first full bath in 6 months. I cried tears of joy for his excitement.

He also has begun four different types of therapy to assist in the developmental delays. It keeps him and I busy during the weeks for sure but as tiring as it can be I am amazed at how strong he is and how he is constantly working hard.

Hiro has been hitting some big milestones:

- he has been doing better at sitting up

- he is rolling

- he took his first real bites of solid foods

- he is accepting a little bit of a bottle

- he is saying "da da"

And all of this happened within a week!

We are overjoyed at the progress he has made but we know he still has a lot of strength to rebuild so therapy will help with this and the areas that he is delayed in.

This upcoming week he has a CT scan and the following week he has an MRI. His last scans showed that there are at least three tumors on his liver. We are anxious as these next scans will show us if they are growing or have stayed the same size from the previous scans. It is scary. And it is difficult to be in this limbo like stage of wondering what will happen next. What happens if the tumors are growing? So many questions and emotions.

As emotionally exhausting as this all can be we are trying to take everything day by day. Today we have our son, he is growing and his personality is blooming. He is beautiful and is our pride and joy. Tomorrow will have enough worries of its own so for now we will be here, present today. Trying to stay focused on the good that today holds and the love that we have for each other.

Thank you for your continued love and support <3

Heather Frost

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