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  • Writer's pictureheatherfrost

this is one

On October 16th, 2022, our handsome little guy turned the big ONE year old!

What a year it has been.

So much to reflect on, a lot to process still, but he is here. We still get the blessing of having him in our life. We are so grateful we still have him. We were not sure at times if he would make it. But he did.

The emotions wrapped within the months since March have been at an intensity we could not bear on our own. And for that we are grateful for all the support and love we have received. Countless prayers, gifts, donations, moral support, meals, hugs, and so much more has been extended to us as a family. It feels like one big warm hug. The kind you just want to fall into and stay a while. Thank you, from the bottom of our hearts!

Hiro is doing so well right now. In an instance we watched him turn from a baby into a full on toddler. His personality is blooming and he is taking huge strides developmentally. It is so beautiful to watch.

We had an ultrasound and blood work a couple weeks ago and it came back looking good. He also had another hearing test and the good news is he hasn't lost more hearing! We are so grateful these tests came back positively.

We did get two new diagnosis' from his genetics tests recently. It came back positive with beckwith-wiedemann syndrome and FAP syndrome.

What does this mean?

Well both syndromes can cause Hepatoblastoma (the cancer he has been dealing with).

On top of that we have some new monitoring we have to do unfortunately.

For the Beckwith-Wiedemann Syndrome he does not have the outward physical symptoms usually attributed with this syndrome, which is odd. On top of the Hepatoblastoma, this syndrome can cause a rare kidney cancer.

The FAP Syndrome almost guarantees that he will have colon cancer at some point in his life. They usually see it in the teen years/early 20's.

With that being said we will continue to do maintenance work with him moving forward. This means continued bloodwork and ultrasounds to monitor the masses on his liver and to now monitor his kidneys. We will conduct this every three months and bloodwork will be done monthly for now. When he turns 10 he will have to start having yearly colonoscopies. These will help us try to catch the cancer early and make any necessary moves to best help him.

This news is disheartening to say the least. To know that there is a big risk for one, if not two, more different types of cancer is really heavy. He has already been through so much...

We are still processing everything.

One day this all could be a reality.

But today he does not have a rare kidney cancer or colon cancer.

Today he has joy and laughter and a smile on his face. Today he is rocking his new hearing aids. Today he is rocking it in all of his therapies. Today he is finishing his bottles for the first time since he was 4 months old without needing the feeding tube. Today he is starting to eat solids and finding a new world of flavors. Today he is rolling around the whole house, close to and eager to start to crawl. Today and everyday he is Hiro, our precious child whom we love to the ends of the earth. We will do anything we can to give him the best life he has despite the looming news of his genetics.

The Beckwith-Wiedemann Syndrome is not one that is passed down from Jon or I. It is a rare mutation that occurs. The FAP Syndrome, on the other hand, is one that is passed down from one of us. So Jon and I did bloodwork and we await results to see which one of us it is.

With these results they have advised us to not get pregnant again.

Honestly, Jon and I had come to this conclusion previously. This is because I nearly died in delivery with Hiro due to my own health issues and those will not be changing so the risk of going through that again was too high for us.

We do want more kids. In fact, before we became pregnant with Hiro, we had started our adoption process. It is something we have always had a heart for and we look forward to the day when we can begin the process again and welcome a child who needs a home.

For now we will be enjoying time with family for the holidays. Since there are many holidays that cultures across our beautiful world celebrate during these months...Happy Holidays and a Merry Christmas from the Frosts'. Much love to you all!

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