How to be courageous and fearful, certain and unsure

The doctors have almost found me a donor.

A 23-year-old man from England.

He matches my HLA profile and blood type beautifully – two of the three most important criteria for pairing stem cell donors with recipients.

I should be over the moon.

When you get what you want – and you’re not sure you want what you’ve got

When we found out that my sister wasn’t a match, the doctors were all set to put me on immune suppression therapy. Some AA patients fully recover after immune suppression. Some have no response at all. Many fall somewhere in between – with myriad potential outcomes over long time horizons, leading to years of doubt and uncertainty.

It was going to be a flip-a-coin-and-see waiting game.

I agonised over which treatment plan felt right for me.

Then I took the process into my own hands and rolled the dice on a higher-risk procedure – also laden with uncertainty, but with the promise of a full cure. I insisted that the doctors search the registry for an unrelated donor. I adamantly told them I wanted a transplant.

Six tense weeks later, they are inching closer to finding my perfect match.

After receiving the semi-good news, I had a series of dreams about going into spontaneous remission. They went like this:

“We don’t know how to break this to you, Jodie…” The nurse is visibly quivering with excitement. “You seem to be recovering all by yourself.”

“Oh… That’s good news.” I try to sound nonplussed, not too smug.

“Yes – the whole department is going crazy over the results. We called a special multi-disciplinary meeting. No-one has ever seen anything like it. You don’t need a transplant after all!”

After this initial revelation follows a fantasy of me being lauded as a ‘medical miracle’ and garnering the interest of aplastic anaemia specialists throughout the world…

You see – I want to recover, and I want to live. But deep, deep down I want my wish fulfilment to play out in reality. I don’t want a transplant to be a necessary part of my journey.

While I am approaching it with genuine confidence and lightheartedness, my sub-conscious occasionally reminds me how big a deal all of this really is.

The good, the bad and the sexy of stem cell transplants

Physically, a stem cell transplant is a very full-on procedure.

It is also an eerily emotional one.

The doctors will zap me with chemo and radiation to virtually obliterate the system that has built my bloodstream since before I was born. This will create a cavity, into which they’ll pour the stem cells from my donor.

The cells from this kind stranger will crawl through my body, seeking out the large bones of my spine, hips, shoulders, ribs, chest and skull – and they will take root there.

Ultimately, they will save my life. They will fabricate the blood that courses through my veins until the day I die. They will reset my immune system. And they will infiltrate nearly every tissue in my body with my donor’s DNA.

I will become a chimera – a sexy sparkly shimmery-sounding word, meaning ‘a body with two distinct genomes’. One of my genomes was bequeathed to me from my parents, whom I know and love. The other will (potentially) come from a man who I’ll never meet – and whose only characteristics I know are his age and his country of residence.

What’s in a gene?

How much of that kind stranger will I then become – physically, energetically…?

All that street food I ate in Thailand, and tap water I drunk in Mexico, and boys I kissed while I was a teen… How much of the robust and complex immunity, built up through a life of reckless adventure, will remain?

What will I be inheriting?

A genome riddled with harmful mutations? Or the genotype of a superhuman – diverse and flawless, and capable only of giving rise to perfect human traits?

I will be alive, yes. I will be making my own blood. But who will I be?

Playing the waiting game

I don’t know the answers to these questions – and I don’t even know how important they are.

What I do know is that it’s okay to be brave and scared, convinced and indecisive. Those paradoxes are my truth – and a part of my journey.

The consultant will soon decide whether this match is close enough. Or she may keep me suspended in limbo, while the team backtracks to square one and searches the registry again.

Until then, the waiting game goes on…

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