Family living in the moment

By Julia Proverbs


On September 2, 2010, two healthy baby girls were delivered by Caesarean section - first Indee and then Sativa. But their parents' joy turned to sadness when Sativa was diagnosed with cancer. The couple set up a Facebook page to share her journey. The family is now preparing to say goodbye to a girl who captured the hearts of thousands.

Sativa Eagle doesn't know she is dying.<inline type="photogallery" id="13187" align="outside" embed="no" />

She doesn't know there are nearly 5000 people around the world following her story on Facebook.

And she doesn't know her mum and dad's hearts are breaking.

What she does know is that sometimes her legs hurt.

And she knows to hold out her arm so pain relief can be administered through the little tube dangling at her wrist.

Right now she knows that she wants the can of energy drink her mother, Sheree Roose, is sipping on.

The 2-year-old scoots across the polished wooden floorboards of their Tauranga home on her knees, grizzling.

She is not in pain - for now the morphine has that under control.

She is having a tantrum.

"You want this, don't you?" Sheree says, tenderly.

Then quickly finishes the drink and hands the empty can to her little girl.

"I was enjoying that," she says.

"But it's hard to say no to her."

Sativa clasps the silver bounty with both hands and starts licking the top.

She has been fed through a Nasal gastric tube since she was diagnosed with cancer at 4 months old.

And, while repeat episodes of painful chemotherapy-induced ulcers have left her with no desire to eat, she likes to taste.

Her curiosity and her tastebuds satiated, she starts rolling the can around on the floor.

Then turns her back on it and moves on to the next thing.

She posts playdough cutters into a plastic container, scribbles on her Magna Doodle and tries to prize her mum's sandals off her feet.

"She's really into shoes at the moment," says Sheree, unbuckling the straps.

It's all typical behaviour for a 2-year-old.

But, as she scrambles around happily on the floor, talk of things she thankfully cannot comprehend float over her head.

Hope. Despair. Death.

These are the concerns of adults, not little girls.

It has not always been like this.

This journey began - and will end - with love.

Sheree, 25, and Tim Eagle, 28, had been friends for eight years when they started dating.

"I always had a little bit of a crush on him but he was married so I never pursued it," says Sheree.

But four years ago, after Tim's marriage ended, she received a text from Tim asking her out.

They had an "off-and-on" relationship for a year and then, during one of their "breaks", Sheree found out she was pregnant.

Tim, who already had a son, Bailey, who is now 4 and living with them, was "ecstatic" but Sheree was "shocked".

"We had a talk about our long-term relationship and decided to bring up the child together and try our best."

The first scan revealed they were not having one baby, but two.

"Tim is an identical twin so he was so happy. He was stoked. I said I wasn't ready to have one, let alone two. I was scared of how it was going to be, how good a mother I was going to be."

On September 2, 2010, two healthy baby girls were delivered by Caesarean section at Waikato Hospital - first Indee and then Sativa.

"I cried. It was very emotional," says Sheree.

After a week in intensive care, due to them being a month premature, and a couple of nights in a mothering unit, Sheree was able to take their babies home.

The twin girls thrived but, soon after their first Christmas, Sheree and Tim realised something was terribly wrong.

"Indee was the loud crier. Sativa was the quiet one. She had a really gentle cry you could handle. She would hardly ever cry, even if she was hungry," Sheree says.

"She started crying a lot and we couldn't figure out why and she wasn't feeding as much as Indee."

The first doctor's visit concluded she was a fussy baby, the second that she had colic and the third, devastatingly, that she had cancer.

"I stared at him in disbelief and said: 'Please get my daughter.' And I cuddled her and cried," says Sheree.

"It just felt like a nasty nightmare."

On January 5, 2011, they were given a name: acute lymphoblastic leukemia (ALL).

"They gave us a big white book of everything we needed to know. I didn't understand it. Now I could read the whole thing and tell you exactly what it means."

The youngest person in New Zealand to suffer from ALL, and one of only a handful in the world, Sativa's treatment plan was complicated.

She had a 40-50 per cent chance of beating the disease, compared to older children whose odds were 80-85 per cent. Sativa was to receive five rounds of chemotherapy at Starship children's hospital over the course of a year, in between which she was supposed to return home.

However, she spent just three days at home in the first six months, after becoming desperately ill.

Sheree stayed in hospital with Sativa, while Tim and Indee bunked down at Ronald McDonald House.

Tim would bring Indee for Sheree to dress every morning, the family would have lunch together and both girls would nap in Sativa's hospital cot.

The cancer was in Sativa's spinal cord and she was too young for radiotherapy, the preferred method of treatment.

After an agonising week's wait, Sheree and Tim met with Sativa's doctor who told them that they would try and help her by injecting chemotherapy directly into her spine, while continuing with chemotherapy for her ALL.

Every Wednesday for 12 weeks, they made the two-and-a-half hour journey to Auckland, returning the next day, after Sativa's treatment.

During that time $8000 was raised - $4000 through a charity motorcycle ride, $3000 through Facebook and $1000 from a friend - to buy them a new car.

"Our car was crapping out. We asked for a lot of help on Sativa's page," says Sheree.

The generosity and well wishes of strangers was overwhelming.

But as interest in Sativa's story grew, so did the cancer. In January this year, on the anniversary of her diagnosis, she almost died under anaesthetic.

During a procedure - that revealed the cancer had worsened - she struggled to breathe and ended up on a ventilator. She remained on it for 20 days.

Three times they tried to take her off it and three times Sheree and Tim were told to prepare for the worst.

"We were saying goodbye," says Sheree.

"We were starting to talk about funerals and what we wanted and she opened her eyes."

Unsure of what the future held, the family came home to Tauranga and "lived it up".

"We went for walks, we went to the park, we went to Bayfair. We took them to the beach and every day we walked around the Mount," says Sheree.

Then they received the call that they would pin their last hopes on. Sativa would be getting a bone marrow transplant. If it worked she would be cured. If it didn't there were no other options available to them.

Therefore on May 24 the bone marrow of an anonymous 22-year-old donor from Germany was transfused into her little body.

In the three months that followed Sativa's hair started to grow back, she took her first steps and tasted food for the first time. Tim went back to work and Indee started kindy.

They were teased with living a "normal" life.

Then a routine blood test brought their world crashing down. The cancer was returning at an alarming rate. The revelation came three days before the girls' second birthday.

Reeling from the news, they celebrated, as best they could, the last birthday their girls were likely to share.

A second, desperate attempt at more bone marrow, also proved futile.

With a prognosis of only weeks to live, they took her home to die.

And while they live their private hell, their "public" waits for the last post.

Because Sativa's journey has captured the hearts of thousands.

Facebook "likes" have leapt from 1000 in February to nearly 5000. Sheree draws strength from people's comments, but there is another reason she pours her heart out on screen. "It's letting people know how this world does work. Before, we didn't know. We didn't know there were children dying around us. Child cancer exists. We are in the community, living under your noses."

Raised a Christian, Sheree says she doesn't know if she believes in God anymore.

"I don't understand it. If God's trying to teach me something at the moment, why bring Sativa into it?"

Nevertheless she prays.

No longer for a miracle, but that Sativa doesn't suffer.

"We are at the point where we are just going to let nature do its thing. Her body has said to us: 'I'm done'. We tried and it didn't work. Now it's time to listen to her and do what she wants to do. They have prepared me, as much as you can prepare, for her death, how it will happen and how I will know," says Sheree.

"We have planned her funeral. We got advice to, so once it happens we don't have to do it while we are grieving. It's creepy planning her funeral while she is still here. It makes me feel sick."

Sativa's cot has been moved into Sheree and Tim's room and Tim has moved into the spare room.

When Sativa cries out in pain, they administer morphine.

Some days are good. Others not so.

They have learned, like little children, to live in the moment.

Sheree says she is not afraid to go to sleep at night - but she is afraid to wake.

"Because in my dreams we're happy and this isn't happening. I wake up in the real world, tired, exhausted and emotionally drained. It still feels like a big nightmare."

- Bay of Plenty Times

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