About her cancer
ーFirst of allー
Thank You for visiting this website.
We've made this website to kindly request for a donation for our
3 year old daughter "Akari" to help with her brain cancer.
(We've closed the donation in December 2021. )
Thank You for your support.
From Daiki( Father) & Mari (Mother)
ーBrain Tumorー
February 2021, She had a walking problem and went to see a doctor
in March.
At first, there seemed to be no problems with her x ray in her legs.
And We were told that She might had some mental shock since
we had recently moved from the City to more Rural Japan.
So the doctor said the mental shock might be the reason for the walking problems, and she will be back to normal in a few months..
But We were told there was a little chance of brain problems, but we had the MRI nonetheless just to get more detailed information..
A week after, She had the MRI in Yokosuka and 5cm of brain tumor was found.
On the same day, he was rushed to the hospital in Yokohama. (Her current location.).
ーExtirpationー
Her tumor is called "Medulloblastoma" and She had to get it removed immediately.
So She had a 10 hours of surgery to remove the tumor. And the doctors told us that they have removed it completely.
After the surgery, She had a side effect called "Cerebellar mutism" and wasn't able to talk for about a month.
And also She's had a hard time walking, grabbing, and seeing. So we began Rehabilitation.
ーTreatmentー
About a month after the surgery, She began taking chemo therapy 5 times (4 times of regular amount and
1 time of high dose chemo treatment at the end).
The side effects are really tough. She has Diarrhea, Vomiting, Mucosal disorders and not able to eat / drink for a week.
1 session takes a month and She can visit home every time after the side effects have cleared. So She only sees her sister for few days a month.
And only one of the parents can meet her a day due to the Covid-19's situation.
Medulloblastoma is a really rare disease and there are not many cases.
So there is no treatment that is 100% successful.
Therefore, We had to test the tumor and decide the future treatment based on the result.
ーResult of Pathological diagnosisー
After 2 momths, We got the result of the tumor test.
The tumor is in the worst group called "Group3" and the possibility of replace and metastasis is bad.
Based on the result, We need to decide the treatment which is whether or not she should take the CSI (Irradiation to the whole spinal cord)".
3 year old is too risky to get that much of radiation and it will impact the rest of her life so much.
So We need to decide from
1,The treatment with strong side effect that's most likely cause disability in the future with high survival rate
or
2,The treatment with a small side effect but an unknown survival rate.( This is because there is no cases of exactly the same situation)
ーFuture Treatmentー
What is the best treatment for her?
Even the professor can't tell us what the best option is.
So at the end of the day, We have to deicide it for her.
We also spoke with other hospital's, Professors, Other doctors that had the same clinical trial for other kids, Nurses, And the Facebook community for parents of the kids with the same disease.
And We have decided.
We'd like to choose the treatment for her to live the rest of her life with better quality..
Even though there are no previous cases to use as a guide, we hope and believe in her to get through this cancer and live without a disability.
She will have to take the high dose chemo treatment at the end of the chemo treatment. And She will have to be in a sterile room and not be able to see anybody for a month.
Then most likely, She will take the radiation therapy in Ibaraki for about 2 months.
ーLastlyー
Thank you for your time reading this.
We've been receiving a lot of love and blessings from all over the world since She started fighting with this cancer.
Akari and all of us know that We are not alone fighting.
We really appreciate it.
Your words of " Let me now if there is something I can do" was a huge support for all of us.
Our child got a rare cancer and her tiny 3 year old body has to deal with it..
The hardest part she has to see us leave at the end of the visiting hours.
Sometimes She cries and holds us using all of her power just tell us "Don't leave me alone", "I don't want to be lonely".
Those times are really hard to deal with..
"Why her...?"
That's types of thoughts pop up in to our head constantly...
Usually kids stays with their parents at this age but Akari has to get through this..
It breaks our heart...
But We believe.....
That there will be the days for us to be together as we used to be and talk about these struggling days with a smile on our faces.
and we can celebrate her birthday every year with no issues.
That as we wish on her name, "Be the one to brighten the world with a warm light from the Eastern country"...
Thank You,
Daiki / Mari
