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  • Writer's pictureheatherfrost

bittersweet next steps

Well if you follow me on social media at all then you will have seen that last week was a tough week.

You can read about what happened here :

We were able to go home Sunday, May 1st, after his breathing was doing better and his magnesium levels were starting to rise.

This past week he has been his happy, playful, chatty and adorable self. He has been working on sitting up right more and also made it the longest he ever has in one sitting for tummy time. He has always despised tummy time and even though a lot of babies hate it I do not think I would enjoy it if I had a giant tumor in my abdomen and an IV line embedded into my chest. steps.

The plan with his treatment from day one was to (hopefully) be able to do surgery or a transplant after he completed 4 rounds of chemo.

4 rounds have been completed and the surgeons let us know that even though the tumor has not shrunk more since the previous scan, they are confident they can remove it without interfering with the left side of the liver. This is great news and means that they can remove the tumor and leave enough of the liver to not need a transplant. A huge relief!

Since no transplant is needed, they are ready to do surgery this upcoming Monday, May 9th. It will be in Detroit. It will be an intense 6 hour long surgery.

I have wanted to write this update all week, but to be honest, it has not been an easy thing for Jon and I to process fully. After the week we had with him in the hospital and finding out surgery is so soon... it can just feel like there is no time to recover from the last traumatic event before the next one comes.

Which is why this is a bittersweet. Obviously we are thrilled that he does not need a transplant and we want the tumor gone as quickly as possible for his sake. We are ready to see our sweet boy free of this awful disease.

The bitter part is out of my own selfishness really. Feeling so drained and unable to comprehend how I will be able to muster up the strength to care for him through this intense surgery/recovery. I know the mom adrenaline will kick in. I am just tired. But he is the one suffering - so I will give all of me to console him, love him, remind him that he is allowed to feel anything he is feeling and cheer him on for all of his bravery. What his little body and mind have already accomplished is nothing short of a miracle.

It is also tough knowing that recovery will set him back developmentally. With the incision being a giant U shape across his abdomen he will have to rebuild a lot of his core strength for tummy time and sitting up. We knew developmental delays would be a thing but when you see him being so happy and doing normal 6 month old baby can really suck knowing that this time next week will be drastically different.

But, looking at his smile is an automatic boost of serotonin and reminder of his amazing endurance through all of this. He is such a fighter. And I never thought I would say a hero...mainly because it has never been anything I could fully understand...but he truly is my hero. He has rescued Jon and I from so many days and nights full of fear and darkness. When he giggles at us, "talks" to us, gazes deeply into our eyes, feels safe enough in our arms to sleep away the world around him, when he places his hand on our cheek or does a goofy new noise or action - all of these interactions are enough for us to momentarily forget about everything around us and see the beauty of who he is.

He will walk away from all of this with scars but this cancer will not define him. He is so much more than an illness. If you have met him you know how full of life he is. Oh and how he loves to cuddle - he just melts into your arms. He is a blessing to us.

And God knew we would need him, we would need each other. And even though all of this has tested my faith in ways like never before - who Hiro is and the immense amount of love from people from so many walks of life - from different places and backgrounds - it is beautiful. It is breathtaking. People with different beliefs and perspectives - people who I might disagree or agree with when it comes to all the crap we have endured globally these past few years, people you would never think would ever join together on any same topic... I have a front row seat to watching and care for a baby who you may have never even met.

I believe it is a glimpse of what Jesus died for. To watch us set aside our own shit (sorry mom) and just love one another. Not love each other only "if they care about what I care about and see what I see politically/morally/sexually/etc." - no, JUST love, regardless. Easier said than done.

I want to leave you with this thought:

When you look at a rainbow in the sky, it is not beautiful because it is all the same color.

It is beautiful because it is full of many colors, shades and gradients and when all of those attributes come together - it forms a magnificent sight.

I wouldn't want a world full of people just like me - I want a world full of people like you and me. When we come together for situations such as this, it is an exquisite sight to see. A sight full of God's glory - a sight like seeing a rainbow.

So thank you. No matter who you are, where you are from or what you believe - you are important and you have helped restore my hope in humanity and remind me of the beauty that I know Jesus offers.

(photo of rainbow taken when I was in Iceland years ago)

Surgery, here we come.

Much love,

heather frost

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