Lily was born on the 28th of February 2010 at 13:25pm in Ascot, Berkshire, weighing in at a healthy 6lbs…a very eager arrival to all of us. She was my wife's 3rd child, but only my first. Lily was a beautiful little baby girl who seldom cried and was an absolute star when it came to sleeping and feeding. During her brief stay, Lily loved bathing, as you can see from some of the photos on her page and also on my page on Facebook This wasn't really a surprise since she was a water birth.
Never in our wildest dreams did we ever think something wrong…given she was 4 weeks old. All her post natal checks seemed fine and she was gaining weight nicely. She developed a bit of a pot belly, but nothing we were too alarmed about, as most babies have pot bellies at some time. The first time we noticed something was wrong was when spider veins started to appear either side of her stomach. At first we thought a nappy had been put on too tight, but after 3 days, with the veins not disappearing, we became a little worried. Two days before we left to go spend time with my wife's family for the Easter Long weekend in Rochdale, we noticed that Lily's feeding pattern had changed and that she was feeding around 2,5 fl oz every 2 hours instead of her usual 4 fl oz every 4 hours.
When we got to my in-laws house on the 31st of March (Wednesday), my mother in law arranged for us to see her local GP as Lily's stomach started to distend a little and become hard. The GP wasn't sure what was causing the spider veins and belly to swell, so she referred us to the on call paediatrician at Royal Manchester's Children's Hospital. This is where our world started to fall apart. We were so proud of Lily as she lay there with 4 Paediatric doctors around her, all drawing blood and pricking her with needles….during all this, she never made a sound…of course, having her dummy dipped in a sugar water solution helped as well. An X-ray quickly confirmed no intestinal blockage, but never prepared us for the next piece of devastating news….a mass had been spotted near her heart which pointed to cancer, but only a MR scan would confirm it. I don't think either of us had more than 2 hours sleep from the 31st March to 1st April.
The MR scan the next day confirmed our worst fears. Lily had a neuroblastoma mass, just to the back of her heart, next to the spine. It had already infused itself into her spine and was slowly crushing it. She also had liver metastases, which was the main cause of the distended belly. It's hard to believe, but her liver was so enlarged, it was applying severe pressure on her other organs as well as pushing them all into the lower left side of her body. Lily had surgery on Thursday afternoon to place a hickman line for the chemotherapy and for a biopsy of her Liver.
In a romantic happy ending, Lily would have recovered and responded to the chemo, but sadly in the end, Lily succumbed after a brave fight. Lily died at 14:29 on Saturday the 3rd of April. During a time that should be filled with happiness and light, our world became filled with sadness. She was 1 day short of being 5 weeks old. The most shocking thing was the speed with which death came about…..to think, that 72 hours earlier, we were holding our little baby girl in our arms, laughing and loving her. Her paediatric oncologist confirmed that Lily's neroblastoma had actually being growing inside her while she was still in the womb. The most awful feeling a parent can ever feel is the emptiness of walking out of a hospital less the child they had brought in to be treated
Our entire family miss her…our little baby girl. Her sisters setup a page on Facebook honouring Lily, you are very welcome to stop by.
Life is but a stopping place,
A pause in what's to be,
A resting place along the road,
to sweet eternity.
We all have different journeys,
Different paths along the way,
We all were meant to learn some things,
but never meant to stay...
Our destination is a place,
Far greater than we know.
For some the journey's quicker,
For some ...