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  • Writer's pictureheatherfrost


Monday, May 9th, Hiro underwent his big surgery at the Children's Hospital of Michigan in Detroit. The surgery was to remove his tumor which was over 9cm in size (before chemo it was over 12cm). Even though it did not shrink a ton, it did calcify more which was a good sign that the chemo is working. His bloodwork also has shown that the chemo is working.

It took over 6hrs long and we were reunited with him after around 8hrs. We are grateful that the surgery went well. They were able to remove the tumor while saving enough of the left side of the liver that he can live with what he has left. We are so thankful for the great surgeons/specialists that were able to help our boy out.

The first few days of recovery were tough - as expected. We ended up in the PICU post surgery and we were moved on Wednesday afternoon to the general pediatric floor. It is always so hard to see his little body covered in tubes and new scars.

His cries of pain are daggers to my heart. His joyful self disappears for a few days as he is mainly sleeping to rest and recover. In those days I miss his smile dearly and watching him play and laugh. I know that the surgery was necessary but gosh it sucks.

Thursday had been the first day that he seemed to start to do better but then Friday we ran into issues. We were able to get to a better place by Saturday and we started to see his personality come back.

His magnesium levels held us up a lot. They have been an issue since he started chemo. Monday, May 16th was not bad but it also was not great. Every tiny difference in him I mention to our medical team. For example, he was more tired, pale, looks like he is trying to cry but no sound comes out and his heart rate was not what it normally is for him.

I have not had a lot of mental, physical or emotional energy to write anything crazy in depth. We lived in that hospital for over a week. I swear the rooms get smaller as time passes.

His magnesium levels finally got to a better place to go home and he started seeming like himself so we were able to go home.

We really missed home of course but we are so thankful for our friends Rachel and Aaron Berry who cared for us all so well and showed us around the Detroit area! <3

I did post something while we were there that was a raw thought from what I have felt throughout this time we have been going through. If you did not get a chance to read it then here is what it said...

"I try to stay grounded in the reality of our life as it is now while also allowing certain glimpses of hope for what could be.

It can be so hard.

The weather is nice but I can’t take him out of here to start to experience grass or a summer breeze.

Instead of hearing children laughing on a playground we hear the wailing of one’s who are suffering.

He isn’t spilling his first bites of solid foods on me or drooling - instead his drain bag is leaking fluids from inside his abdomen on both him and I.

He’s not building core strength to learn to crawl or even become more acquainted with tummy time - he has a huge incision across his abdomen where a giant tumor used to be. And now the strength he had built previously will need to rest and rebuild.

He isn’t crying from teeth growing in or to be held…he’s crying because of pain that is encompassing his tiny body. And he cannot communicate with words yet, so the cry is different than any of his other cries and it tears my heart into two.

There isn’t the sounds of annoying toys that are scattered throughout a house - there is the beeping of machines letting us know he isn’t breathing right or his heart rate needs attention.

I know this is “just a season” that one day will pass - and I’m not angry when I see other kids his age doing the things that almost 7 month olds do - I’m so happy for those babies because no baby, no family, no one ever deserves this.

For now I’ll watch the blue skies from the hospital window as I pray for the kids I hear down the hall and for my own son. For these children who just want to be children but may never get the chance.

Im sorry as I know it’s depressing - I’ll spare you from the photos of Hiro and everything he has hooked up as it is a tough sight to see - but our reality is depressing at the moment.

I don’t want to dwell in it too long (as I’m already someone who struggles with severe mental illnesses) but I also don’t want to act out a fake optimism to just suppress the emotions that are here.

As hard as it can be, we all deserve to acknowledge our current reality and allow our emotions to feel these very real and very raw feelings. #hiroendures"

It has taken me a long time to write this update. Honestly even though Hiro has been recovering - the past couple of weeks have felt a little normal. The most normal life has felt in a long time. We only ended up having to be admitted one night for a random day that Hiro was struggling but the next day he was better and we were able to go home.

We have gotten to see some friends of ours, gone to the park, played outside, tried different solid foods (all rejected but we are working on that haha), had family over and not been in the hospital as much. He has a medicine schedule everyday that we have to keep up with and he still has his feeding tube and the central line tube in his chest but even with all of that having a taste of normal has been so sweet.

It is crazy to look back and see how far we have come and grown as medical parents, as a couple, as a family, as individuals...all of this has been such a difficult season but we have no choice but to take each day as they come. And having moments of normal life has been refreshing.

As of right now we are planning on his next round of chemo for Monday, June 6th. I do not want to say goodbye to this normalcy but I know that we could never have it without taking the next steps for our sweet boy. Life is such a bittersweet thing.

The rest of treatment is (hopefully) two more rounds of chemo, therapy evaluations, MRI and hearing tests. Depending on how all of that goes will depend on the future of his treatment. For now we set our sights on today and we savor the moments as much as we physically and mentally can. We prepare ourselves emotionally for what is to come while being present in the now. It is the only way forward.

Thank you for your prayers, patience, good vibes, support and love. We are incredibly grateful.

heather frost

*Enjoy this photo dump!*

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