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  • Writer's pictureheatherfrost

confusion and unknown

At Hiro's 5th round of chemo last week (Monday, June 6th) they drew his labs like they always do. While they did the normal steps for getting him started ready for chemo they got him hooked to his fluids in preparation. He reached the desired hydration faster than we ever have. Since this happened so quickly we were able to get all of his pre-meds done and get his 5th cycle started at about noon. Everything went so smoothly and we were finished in the early evening. (We stay the night every round of chemo so we didn't leave just yet).

While Hiro was finishing up, his doctor (whom we adore) came into the room. She informed us that his AFP (alpha fetoprotein) had rose since the previous reading a couple weeks prior. AFP is a tumor marker and is a bloodwork that gives us a really good read on what might be happening inside his little body without having to do scans.

His AFP had been dropping the entire time we have been going through chemo and surgeries. Which is great, it is what we want to see. After his big surgery in May, it looked amazing and was almost in a normal range.

Unfortunately this was no longer the case. Instead of dropping it was rising. This is not good. They decided we would do bloodwork the following day to see what it would show.

On top of all of the stress of this bad news, I have been experiencing abdominal pain. Unfortunately the whole day at the hospital for Hiro's chemo I was in intense pain. I ended up in the fetal position on the couch in his room. Over a few hours it got worse so we decided I needed to go downstairs to the ER. After some testing they discovered that I had a cyst that ruptured (probably when I was in the fetal position a few hours earlier).

A new level of mom guilt was unlocked that night. Having to leave your child who was currently getting chemo infused because of your own failing body...a terrible feeling. We are grateful that my parents were there to care for Hiro so Jon and I could go figure things out. And for me, I am thankful for my friend who reminded me that I still need to make sure I am taken care of to help take care of Hiro.

Tuesday we were eager to hear back about his AFP. unfortunately it was still the same as the day before. We were able to go home Tuesday but we had returned Thursday for more bloodwork. The marker rose again even in the day that we were not there. This was very discouraging news.

On Friday (June 10th) they sedated him to do an MRI and CT scan of his abdomen to see if we could see any tumors that might be growing. For older kids and adults we do not have to be sedated for these tests, but since it is difficult for an 8 month old to sit completely still on command, he has to be. We got a call later that day from his doctor that nothing could be seen. This was not necessarily good or bad news.

Numbers are rising and we need to figure out why.

Are you following so far? We struggled to so do not feel bad if you are having a difficult time.

Monday, June 13th, we went in for more bloodwork. His AFP dropped a since Thursday...


Our doctor let us know that more testing would be helpful and that the drop could be from the chemo he had just received. Since this cancer can spread to the lungs, heart or even the brain we scheduled a PET scan for Friday the 17th and a brain MRI on the 24th.

Fast forward to Thursday the 16th, we go in and did more bloodwork.

His AFP has dropped again...what? Still from chemo? Possibly.

Is something still growing? Potentially.

Our hope is that if there is regrowth, that it has not left his liver and spread anywhere else.

Let me give you some numbers to keep up with where we are at:


After big liver surgery : 80

2 weeks later June 6th : 140

Tuesday, June 7th : 140

Thursday, June 9th : 218

Monday, June 13th : 124

Thursday, June 16th : 84

This is confusing. His cancer is already a rare one so to have this happen has thrown us all off.

Since it has dropped the past two draws, we decided to skip the PET scan for now, do his 6th round of chemo next week and keep the brain MRI. The PET scan requires radiation whereas the MRI will just be anesthetics. If nothing is seen in the brain MRI then we will watch his AFP weekly to decide what to do next. The PET scan might still happen if nothing is found in the brain MRI and if his bloodwork still rises.

We are so grateful for Hiro's doctor and for the doctors that she can contact through the Children's Oncology Group to give advice on what to possibly try or what could be happening. They are a lot of questions at the moment with little answers. But we trust that they are doing what they would do for their own children. We know he is so very loved and cared for there. We could never fully express our gratitude to his medical team.

Not only do they love and care for Hiro, they also are kind and caring to Jon and I.

- they have hugged us, cried with us, laughed with us -

- they cheer Hiro on, are proud of him, sad for him -

We feel loved. We know Hiro is so loved. They all have feelings too and this does weigh on them. We care about each of them and all they do for us.

And thank you for everyone who is reading this, for your support and your love for our little man. It means the world to us and we could not do it without a community. Seriously...this rollercoaster is really tough and we just want the best for Hiro. We know you do too. He is such an amazing baby. Always so full of joy and life - no matter what.

In the meantime we were able to enjoy time with my sister and her amazing fiancé while they were in town visiting from Florida and the rest of our family. <3

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