The Long Story


2011 promised to be an eventful year. In January, having just bought an old house in need of renovation in a small country town, Aidan and his family moved into rented digs nearby in order to be around while work went ahead. Everything seemed set for a new beginning.

Then fate decided to throw one almighty curveball. A week after moving house Aidan was diagnosed with Acute Myeloid Leukaemia (later identified as AML M4 – Acute Myelomonocytic Leukaemia). This came to light because of a routine medical check-up that showed irregular results on the blood test. A bone marrow sample confirmed everyone’s worst fears. Aidan was told he would need to take six months off work and undergo intensive chemotherapy. He received induction chemotherapy and thankfully reached remission. This was followed by two rounds of consolidation chemotherapy. It was 164 days before he could come home again.

Taking the train to hospital in February 2月、病院へ向かう電車内で

As is so often the case things had not quite gone according to the script. The amount of time needed for Aidan’s system to recover after each round of chemotherapy was much longer than expected. Put simply, his marrow did not appear to be functioning. This, together with other data collected, led the doctors to conclude that there was a pre-existing condition called myelodysplastic syndrome (MDS) and that a transplant was no longer just an option but a necessity.

Aidan was referred to a university hospital. Though his prognosis had originally been quite favorable he was now told that he would not live another year without treatment. It was his choice whether to go for a transplant or not but given his age (46, young for an MDS patient) it was recommended as the only chance for medium to long-term survival. For Aidan, with two young children (aged two and six) the decision was easy. If only everything else was so simple.

At home 家で

A sibling offers the best chance of finding a match (someone who shares the same HLA and is therefore immunologically compatible). Hopes were high for Aidan as he has four siblings but none proved to be a match. Furthermore, he was unable to find a donor on the Japanese donor bank because of his ethnicity. To find a suitable donor in time Aidan must now use the American donor bank (Japan still has no direct exchange programme with European banks).

Potential donors have been identified and so there is hope. However the process is expensive and the patient must pay upward of ¥3,500,000. The figure would be far less if Aidan were able to find a donor domestically as his National Health Insurance would shoulder much of the cost. Sadly with an international search there is no help.

Aidan has been unable to work since February and cannot be sure when (or even if) he will be able to resume work. It is on top of all this that he must find ¥3,500,000 or more for a transplant that is his only chance.

We feel he has enough to struggle with and worry about without the additional burden of somehow finding the funds. He is currently receiving maintenance chemotherapy because the risk of relapse is so high. It is essential that the transplant happens as soon as possible.

'Clean Room' 「クリーンルーム」


ここで、運命が全くの意表を突く展開をする。引越後わずか一週間後、エイダンは急性骨髄性白血病との診断を受ける(後に急性骨髄単球 性白血病 AML-M4と特定)。このことが判明したのは、定期健診における血液検査が異常値を示したからだった。骨髄検査の結果、最も恐れていたことが確実なものとなった。半年間は仕事を休むことになること、そして強力な化学療法を受けることを告げられた。導入療法、続いて地固め療法を2回受けた。再び家に戻れたのは、それから164日後だった。



ドナー(HLA適合者、すなわち免疫機構の型を共有する人)は、兄弟間で見つかる可能性が最も高い。兄弟が4人いるエイダンは期待したものの、 誰ひとりとして適合する者はいなかった。さらに、日本の骨髄バンクでは人種が異なるためドナーは見つからない。なるべく早くドナーを探すためには、アメリカの骨髄バンクを利用するしかなかった(日本はいまだに欧州各国のバンクとは直接提携していない)。