The Butterfly Garden

Charlotte and I got married in March, 2011. Our daughter, Emily, was born in 2012. Then, in 2013, Charlotte got pregnant again. We were both very happy and excited.

But, after 10 weeks of pregnancy, Charlotte woke up in the night with a sharp pain in her chest. I took her to the GP, and he sent us to the Bristol Royal Infirmary.

After several days of tests, they found a large growth on Charlotte’s liver, which was pressing on a nerve. They diagnosed it as a benign type of cyst, called a liver adenoma. The growth was being caused by prenancy hormones. They said we would have a difficult few months ahead, but that everything would be okay in the end.

They were very wrong.

Over the next few weeks, the pain in Charlotte’s chest got even worse. Scans showed the cyst was growing at an alarming rate. They offered us a difficult choice. We could terminate the pregnancy, to reduce the growth hormones in Charlotte’s body, so the cyst, and the nerve pain, would be reduced.

The other option was that Charlotte could have major surgery to remove almost half of her liver, during the second trimester of pregnancy. But there was 1 in 20 chance of Charlotte, and our baby, dying during the operation.

Charlotte chose the surgery. She did not want to end our baby’s life. Even at the risk of her own life. The operation was scheduled for September 26th, 2013.

However, in the days before the operation, the routine blood work came back showing signs of cancer. They urgently ran a biopsy, and the results showed that the growth was actually cancerous. Metastatic cholangiocarcinoma.

It’s a type of cancer which starts in the bile duct, and it’s undetectable at that stage. But when it moves to the liver, it grows so quickly that it becomes unstoppable.

The cancer was terminal, and growing very fast. At the prognosis meeting with the oncologist, on the 2nd of October, 2013, he told us that Charlotte had just four to six weeks left to live.

She was 33 years old, 4 ½ months pregnant, and she’d only been unwell for 8 weeks.

There was no way to stop the cancer from ending Charlotte’s life. And there was only one type of chemotherapy that could slow it down enough to give her more time. But she couldn’t even have that particular type of chemo, because she was pregnant.

We had to make another choice. Let nature take its course, which meant Charlotte and our baby boy would most likely pass away within 4 to 6 weeks. Or instead have an advanced stage termination, so Charlotte could try the chemotherapy. At least then she would have the hope of getting more time with me and our daughter, Emily, and the rest of her family and friends.

And so, on October 5th, 2013, we had to say hello and goodbye to our baby boy, Jack. I have a lot of complicated feelings about Jack, and about the choice we made. But I will write about that a later time.

For now, I will only say this. I loved you, Jack. We both did. You were wanted, and you were very loved. I wrote this song for you, and I hope that wherever you are now, you will be with your mum. I know she will be caring for you with a lot of love.

I wish things could have been different. I wish you could have both lived here, with me and your sister. But instead we had to say goodbye.

Please know that I love you, always. Here is a song for you, Jack.

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‘A song for Jack’

Lyrics to ‘A song for Jack’

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Softly I sing to the wind and the rain,

Tears mark the ground where you lay,

And I dream of times we never had,

And I miss you more each day.

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I want to find you, and keep you safe from harm,

Tell you all the things that you need to know in this world,

And you must be somewhere out there in this dark,

But before I could find you, you were gone.

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Slowly I sing of a rainbow dream,

Your mum joins her voice with mine,

And as we lay you down for eternal sleep,

Take a lifetime of love with you tonight.

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I want to find you, and keep you safe from harm,

Tell you all the things that you need to know in this world,

And you must be somewhere out there in this dark,

But before I could find you, you were gone.

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Fateful words,

Cry of grief,

Lost little soul,

Face to face,

Hand in hand,

Tiny and cold…

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I want to find you, and keep you safe from harm,

Tell you all the things that you need to know in this world,

And you must be somewhere out there in this dark,

But before I could find you, you were gone.

Before I could know you, you were gone.

Before I could find you, you were gone.

But I’ll always love you, little one…

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Next post: A song for… myself? (Coming soon)

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