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Hi, I'm organizing this fundraiser on behalf of my relatives, their son Kaichi Oomon, and their family. Please read their story below.
親戚のお子様・大門海智くんのために支援金を集めています。どうかお願いします。
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May 14, 2023 Update
Thank you everyone for your support!
Kaichi was recently granted official approval to take part in a research study at Hokkaido University Hospital on the new treatment. Kaichi will soon begin undergoing treatment with the new drug.
In our last update, we wrote that we were hoping that Kaichi could begin receiving treatment by Feburary of this year at the earliest. Although it took a little longer than we had initially hoped for, we're grateful that Kaichi is finally able to begin his treatment. It has already been one year since his brain tumor was discovered.
Unless something happens that prevents Kaichi from continuing to participate in the study (For example, severe side effects or allergies could prevent him from participating. The doctors say that there's a large possibility that Kaichi's eyes would be affected), Kaichi will continue to travel to Hokkaido periodically until 2027 to undergo treatment.
We hope that the treatment will be effective. However, in addition to this treatment, there's also a possibility that we may have to consider other different treatments as well in the future in the long-term due to several factors. We plan to use the donations that we received from everyone to cover costs related to treatment and to cover costs related to unexpected situations such as these in the future.
Kaichi's symptoms have been growing slightly worse these days, including the numbness in his right hand, hiccups, and choking. In addition, he has started to experience numbness in his right leg as well. However, Kaichi always makes sure he's careful about going slow when he does activities like swallowing or walking down stairs, and Kaichi continues to go to school.
Our family is very grateful for all the support we've received from everyone over the past year since Kaichi's tumor was discovered. Thanks to your support, we were able to stay positive in both mind and body this past year. We're deeply grateful for your support! Thank you!
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Oct. 11, 2022 Update
Thank you everyone for your support!
We are so grateful for your kindness and support.
We apologize that we haven't been able to thank each one of you individually yet, but thank you for helping our family. We are so grateful to all of you.
A lot of changes have happened since we first received the diagnosis. We have recently come to learn that miraculously, it may be possible for Kaichi to participate in a special research study being conducted by a university hospital in another prefecture. If Kaichi is indeed able to participate in the study, then the treatment costs may be lower than what we had originally expected. However, we still have not been able to enter into a contract with the university hospital, and are still not sure whether the Ministry of Health, Labour and Welfare will approve the study. Furthermore, since Kaichi would be receiving the treatment through a special research study, there's also a possibility that the investigators could halt administering the drug in the future due to unforseen reasons. In that case, Kaichi would not be able to continue participating in the research study anyore.
Based on these considerations, and considering the long-term outlook, we must take into account the possibility that we may need to pay the entire cost of treatment out-of-pocket sometime in the future. We plan to use the donations received from everyone to cover the treatment costs.
The situation is still uncertain, and we weren't sure when would be the best timing to update everyone about the current situation. If everything goes smoothly, then we expect that the Ministry of Health, Labour and Welfare will approve the research study around February of next year. We just wanted to give everyone an update on the situation for now, and will continue to update everyone as we find out more.
We are deeply grateful for all the kind words of encouragement and support we've received from all of you. Thank you so much for your help!
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We have a 9-year-old son. When our son fainted all of a sudden one morning, we took him to the doctor for an exam. They discovered he has a brain tumor.
After the discovery, our son went through a 10-hour open brain biopsy. Our son's tumor is located in the brainstem. Since the tumor is located in such a critical area of the brain, it isn't possible to remove it through surgery. Treatment with drugs is the only option. However, the drug hasn't been approved in Japan yet. We have no choice but to pay for the treatment out-of-pocket.
We plan to have our son continue to receive medical treatment in Japan. However, the drug costs over one million yen per month (approximately $7,100), and patients must take the drug continuously for at least one year in order to see the effects. Our son will need to continue taking the drug for the rest of his life.
Unfortunately, we haven't been able to start getting our son treated yet because of the high cost of the drug.
This treatment is the only option available, so we're asking for your help.
Our son's symptoms are slowly getting worse day by day. He has started to choke on his food when swallowing and has started to have constant hiccups throughout the whole day, even while asleep. It's also getting harder and harder for him to move his right arm, and his grip strength dropped 5 kg in one month. We worry about him so much every day.
The tumor will continue to grow while we wait to get him treated. As it grows, the tumor could cause him to become paralyzed, and the paralysis could be permanent. Therefore, we want to get him treated as soon as possible before his symptoms get worse.
In the beginning, we were hoping to turn to crowdfunding to raise funds to cover our son's medical costs, but here in Japan, it's not allowed to use crowdfunding to raise funds for medical expenses for an individual.
On the other hand, we can't just sit here doing nothing while our son gets worse, so we started this fundraiser on GoFundMe and would like to ask you for your help.
Our son is a kind boy who loves to take good care of his family and friends, and loves to dance and play soccer.
Please help our son. Thank you!
The Oomon family
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Drug name:
1. Dabrafenib
2. Trametinib
The treatment uses these two drugs in combination.
These drugs have already been approved in Japan for treating several conditions, including lung cancer and malignant melanoma, and are already covered by insurance when used for treating these conditions. However, these drugs have not been approved for treating brain tumors yet.
Clinical trials are currently underway to study the use of these two drugs for treating brain tumors. However, the clinical trials are already full, and there aren't any other trials we're able to participate in.
~~~ Disease progression ~~~
May 23, 2022: Kaichi lost consciousness and had a seizure
May 30, 2022: Doctors discovered a brain tumor
June 1, 2022: The family visited a different medical institution to see a specialist. Doctors suspect Kaichi has a brainstem glioma.
June 15, 2022: The family visited Osaka City General Hospital
June 19, 2022: Kaichi underwent a biopsy
August 12, 2022: The attending physician explained that the drug hasn't been approved yet, and that there are no other treatment options available.
We also got second opinions from three other doctors and consulted with two different brain surgeons. In the end, it was determined that this particular drug combination is the only treatment that is effective against tumors caused by this gene mutation.
Kaichi's tumor is located on the medulla oblongata. Therefore, even a small increase in the tumor's size could cause severe symptoms to appear (including facial paralysis, paralysis of the arms or legs, difficulty breathing, and difficulty swallowing).
The funds raised during this fundraiser will be used to cover the treatment costs. Furthermore, if it becomes possible for Kaichi to participate in a clinical trial or research project in the future, the funds will be used to cover the treatment costs.
We are deeply grateful for your help and support. Thank you.
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【更新】2023年5月14日
ご支援、応援してくださっている皆様へ
この度、北海道大学病院での治療研究への参加が正式に認められ、新薬を投薬できる事になりました。
「早ければ2月頃には…」とお伝えしておりましたが、脳腫瘍が発覚して1年、ようやく決定いたしました。
今後は効果が認められ、副作用(高確率で目にはならんかの影響があると言われています)、アレルギー等で参加不可となってしまわない限り、基本的に2027年までは北海道へ通い治療を受けることになります。
まずは効果がないと意味がなく、また、効果があったとしても複数の要因から様々な治療を検討するタイミングが長期的に起こり得ると考えています。
皆様からご支援いただいた寄付金は、今後の治療に係る費用やこれから起こるかもしれない不足の事態において、大切に使わせていただきたいと思います。
海智の状態ですが、右手の麻痺、しゃっくりや誤嚥は以前より少し増えたかなという程度ですが、新たに右足の麻痺も出てきました。ゆっくり飲み込む、階段はゆっくり下りる、など海智自身で気をつけて過ごしており、変わらず学校にも行けてます。
腫瘍が発覚してから1年、私たち家族は皆様のご支援、応援をいただき、心身共に前向きに過ごすことができました。心から感謝申し上げます。
引き続き、どうか見守って頂けます様、よろしくお願い申し上げます。
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【更新】2022年10月11日
ご支援、応援して下さっている皆様へ。
皆様の温かい応援とご支援を頂きまして、本当にありがとうございます。
お一人にお一人にまだお礼を伝えられておらず申し訳ないのですが、
私たち家族を助けていただき、感謝の気持ちでいっぱいです。
あれから、日々様々に状況が変化しております。治療については、
このタイミングで奇跡的に、他府県の大学病院での新しい特例研究に参加できる可能性が出てきました。
この研究に参加できた場合には、当初考えられていた治療費よりは抑える事ができそうです。
しかしながらまだ大学病院との契約書も交わせておらず、厚生労働省が認可してくれるかどうかもわからない状況です。
また、あくまでも特例研究における治療に参加するので、例えば、なんらかの理由で薬剤投与が中断となった場合、研究に参加し続ける事は難しくなります。
これらの状況から、長期的な視点で、全額自費での治療となってしまう可能性も並行して考えながら、
皆様の大切な寄付金を治療費に係る費用として使用させて頂きたいと思います。
方向性が不透明なこの時期にお伝えするべきなのか、タイミングは悩んだのですが、
順調に進んだとしても、厚生労働省の認可がおりるタイミングは来年2月頃とのことで、
ひとまず現状を皆様に報告させて頂いた次第です。
また経過をご報告させていただきます。
皆様、この度は、本当に温かな励ましのお言葉とご支援を頂きまして、心から感謝申しあげます。
今後ともどうぞよろしくお願い致します。
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とても元気だった9歳の息子がある日突然倒れて、
検査で脳腫瘍が見つかりました。
その後、病理診断の為に、10時間に及ぶ開頭手術を受けました。
脳幹部分にがんがあるので、手術で摘出はできません。
効果が実証されている薬が一つだけありますが、日本ではまだ薬事承認されていないので、全て自費での治療が必要です。
治療は引き続き日本で受けていくのですが、薬剤費は1ヶ月分で100万円以上かかり、まず最低1年は飲む必要がありますが、基本的にはその後も一生飲み続けることになります。
とても多くの費用がかかる為、まだ薬を飲めていません。
治療方法がその一つしか無い為、どうか皆さまの力を貸していただきたいです。
息子の症状は少しずつ悪化してきており、食べ物を飲み込むときに詰まらせたり、しゃっくりも常に出ていて、寝ている間も出ています。
右上肢の動きが少し鈍くなってきており、握力も1ヶ月で5kg落ちてしまいました。
毎日不安な気持ちで過ごしています。
薬を待っている間に麻痺が出た場合、薬を飲んでも戻らないこともあるので、なるべく早く、症状が進行するまでに飲みたいと思っています。
日本では治療費を目的としたクラウドファンディングは認められておらず、実施することができません。
けれど日々少しずつ悪化していく息子の症状を見過ごす訳にいかず、
どうか皆様に助けて頂けたらと思い、
go fund meにてキャンペーンを始めさせて頂きました。
サッカーとダンスが大好きで、家族や友達を大切にする優しい男の子です。
どうかお願いします。皆様のお力で助けてください。
大門家一同
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病名:小児脳幹部腫瘍・脳幹グリオーマ
(遺伝子BRAF V600eの変異陽性)
薬剤名:
①ダブラフェニブ(Dabrafenib)
②トラメチニブ(Tramethnib)
上記2つの薬剤を併用。
同じ薬を、肺がんや悪性黒色腫などでは既に保険適用されて使えているのですが、
脳腫瘍ではまだ承認されていません。
この薬を使った脳腫瘍の治験が現在行われておりますが、定員オーバーで締め切られており、参加できるものはありません。
〜経過〜
2022.05.23 痙攣発作で意識消失。
2022.05.30 医療機関にて脳腫瘍 発覚。
2022.06.01 別の医療機関にて、専門医に受診。脳幹グリオーマの疑い。
2022.06.15 大阪市立総合医療センター受診。
2022.07.19 生検手術の実施。
2022.08.12主治医より薬が未承認であること、他に治療の選択肢がない事の説明を受ける。
セカンドオピニオン3件、また脳外科で有名な先生方２名にも相談させていただきました。
やはりこの遺伝子に効果があるのは、世界でもこの薬しか無いという事。
腫瘍が脳幹部の延髄にある為、少しの増大で深刻な症状が出る可能性が高いです。
(顔面や手足の麻痺、呼吸障害、嚥下障害など)
＊このキャンペーンで寄付していただいたお金は、今後の治療にかかる費用に使わせて頂きます。
また、もしどこかのタイミングで新たな治験や研究参加ができた場合でも、全額治療にかかる費用に使わせて頂きます。
どうぞよろしくお願いいたします。
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Noteにて、活動の背景を記載しています。御覧いただけると幸いです。