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  • Writer's pictureheatherfrost


With Hiro's cancer (Intermediate Risk Hepatoblastoma), he qualified for a clinical study for his treatment. After learning about it and weighing the options, we decided we would be up for trying the trial.

What happens after you sign consent, you get entered into the system and they basically flip a coin. On one side of the coin is the clinical trial and on the other side is the standard treatment that is usually done. The mindset behind this is that if they knew that one was better than the other - they would just do the one that is best. But since this study is only about 4 years old they cannot say for sure that it is greater/worse than the treatment that they usually do for this cancer. So the selection is randomized.

Here are my uneducated basic points of each treatment plan:

Standard Treatment:

Clinical Trial

  • 6 cycles

  • 6 cycles

  • Cycle occurs every 3 weeks

  • Cycle occurs every 2 weeks

  • 4 different types of chemo meds

  • Only 1 type of chemo med

  • Long list of side effects/longterm symptoms

  • Not as long of a list for side effects/longterm symptoms

When thinking through the pros/cons of each treatment we really liked that the clinical trial could potentially work faster and that it would be only one chemo med instead of four which could help with side effects/longterm symptoms.

Toledo Children's Hospital is part of the Children's Oncology Group. This means that they can pull resources/advice from other hospitals/doctors who are also in the C.O.G. They would have access to people who have been doing the study. This specific study has mainly been evaluated in the USA, Europe and Japan.

After we talked to the doctor about both treatments and we said we are willing to try the trial, they went and entered us in. About an hour later, they let us know that we were selected for the trial! We were very excited for that.

The major side effects for this chemo med is nausea/vomiting, hair loss, hearing loss and more.

He has already completed two full cycles, had a blood transfusion and today (April 1st) he had a CT scan to check on the tumor. He gets blood work weekly and we have been doing the best we can to care for him at home. He has been such a trooper. He is brave and even if he is having a bad day he still tries to give as many smiles as he can. He will have to have surgery or possibly a live transplant once they feel the tumor is shrunk enough.

I had cancer before (a different type than what he has). It was hard and I still live with daily symptoms that remind me of all that cancer took from me.

But watching Hiro go through is the hardest thing I have ever faced. So much worse than when I was diagnosed and going through my own treatment.

It is tough to know that as his parents we cannot physically do anything to fix any of this or take his pain away. We are grateful he will not fully mentally or emotionally remember this part of his life but we do know that our bodies hold trauma.

No matter what, we will be by his side, holding him through this. We will do anything we can to rid of this horrific disease that is trying to conquer his tiny body.

Even when he loses his hair and if he loses hearing or his liver...those things are better than losing him.

Monday, April 4th (2022) he will go through his 3rd cycle of chemo. We continue to be admitted for every round and it is a 6hr infusion. We will probably hear about his CT scan from today as well.

We are praying that the tumor is shrinking, that it is not spreading anywhere outside of his liver, that this trial is working so he does not have to endure more/new chemo meds (if it comes to that we of course will do what it take), for his tiny body to stay strong as it endures everything that is being thrown at it and that he will continue to be the feisty, smiley, cuddly boy whom we love dearly.

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