Sunday, July 30, 2006

[I'm starting to wind down. I am VERY grateful to Sarah for taking some of the 1/2 hour posts for me, as the party is STILL in full swing downstairs!! We are STILL $53 short of the $1000 mark! Even if you can only spare $1, please Sponsor Me!]

Angel Naomi: written by her mother [Post #32 1 AMish]

Our little girl Naomi was diagnosed with Neuroblastoma in May 2002 when she was two and a half. It was all very sudden. Naomi was admitted to the children’s ward. The first week was spent having lots of tests including scans. She also needed to have a Hickman line (central line) put in, as well as an NG tube to build up her weight. From then on and throughout the 20 months that she was ill, Naomi had a night feed, which would drip a thick nutritious liquid directly into her stomach.

After Naomi was diagnosed, she underwent six courses of chemotherapy during that year.

Although Naomi’s main hospital was the Marsden, we were told that her shared care hospital would be Maidstone. It was explained to us that if Naomi ever had a temperature, then we should take her straight to Maidstone. We got to know Maidstone Hospital very well during that first year, as Naomi had an infection after every one of her chemo treatments. And, we would usually spend at least a week on the ward each time.

It was at Maidstone that Naomi met the person who would become her very best friend in the whole world, Claire the play specialist. Claire made those visits to Maidstone so much easier. While on the ward at Maidstone, Naomi was reverse barrier nursed, which meant she was expected to stay in her room the entire time, which was quite difficult to achieve! However, Claire made sure that there were times when the play room was shut to other children and Naomi was free to play in there. In addition, Claire would come and play with Naomi in our room. Naomi became the queen of the Nintendo console and the world’s expert on Disney videos!

Throughout her illness, Naomi was nearly always bright and happy, which made the whole experience so much easier for everyone. We also received the most wonderful care throughout.

Naomi had a nine-hour operation at St George’s Hospital in December 2002, which was regarded as a success.

In January 2003, the medical staff at the Marsden seemed happy with Naomi’s progress and she was taken off treatment. She then spent two wonderful months at home being a happy and normal three-year-old. However, by March she was becoming tired again and seemed to be showing some of the symptoms she had exhibited when she was initially diagnosed - such as an enlarged abdomen and a lack of appetite. Our worst fears were realized when the Marsden confirmed that, sadly, she had relapsed.

Naomi then spent a number of weeks in hospital and was given four courses of high dose chemotherapy. This time, rather than being attached to chemo drips for two or three hours at a time, she was attached for up to five days.

In August, the same surgeon operated on her again at St George’s. This time, the operation was far from successful. In fact, after ten hours of surgery, the team had not managed to remove any of the tumor. We were devastated, particularly as we believed there were no further treatment options left for our daughter. However, after a visit from Marsden doctors the following day, we learnt of a further treatment that Naomi was being considered for, MIBG.

We were already familiar with the term MIBG, as Naomi had had a MIBG scan to confirm her diagnosis. At that time, a small amount of radioactivity had been injected into her blood stream, which the neuroblastoma cells had taken up. We hadn’t realized, however, that by giving a larger amount of this same substance it would, in theory, attack and destroy the neuroblastoma cells from within.

Before this treatment started, however, Naomi had to endure a bout of shingles, followed by septic shock, which saw her admitted to intensive care at Guy’s Hospital in London.

Once the MIBG treatment started, Naomi herself was radioactive, so we had to be careful about how near we got to her and how much time we spent with her. She also had to be sedated for 5 days and left in a lead-lined room.

The initial results from this treatment looked promising and, just before Christmas 2003, we received a phone call to say that things were looking good. So, Naomi was able to enjoy a wonderful 4th birthday on 15 December, when the star guest at her birthday tea was Claire the play specialist. And, Christmas was a special day too. However, Naomi fell ill on Boxing Day.

We took her to Maidstone that day and then to the Marsden on the Tuesday for a scheduled appointment. She became increasingly unwell and died at the Marsden just two days later. Breaking the news to her lovely brother Kristian, who is now ten, was the hardest thing we had to do. They loved each other so much.

When Naomi was in hospital, she loved watching Disney videos, and Snow White and Sleeping Beauty were her favorites. It didn’t matter how many times she watched them, she still shouted “Don’t touch the spindle Sleeping Beauty” and “Don’t eat the apple Snow White.” And, in the end, it was the same for us. However much we went through as a family, we still had hope, and that’s really important.

For us, hope for the future continues to be in the shape of Kristian, and our special blessing, Elsa. Elsa was born on 1 June last year and has brought so much happiness into our family. We have such wonderful memories of our four years with Naomi, and we know she would have adored her new baby sister.

Nikki’s Notes: Naomi and her special relationship with Claire makes me smile, everytime I read over that story. I want to thank Naomi’s mom, Angela, for all her support during the pre-stages of the Blogathon as well as during! She’s a wonderful lady! She told me that Naomi would be watching over my shoulder as I wrote, and I honestly believe she is. I keep having those moments where I see something out of the corner of my eye, but then, nothing is there. I'd like to think it's Naomi!

Much love to everyone. I'm on instant messenger if you want to say hi!!! pookielocksgirl


Anonymous Anonymous said...

Hello to Naomi's mum, I'm very sorry to read that Naomi passed away. I'll think of her next time im watching or hear a fairy tale and snow white goes to eat that apple or anything like it. Take care, Viks

7/30/2006 04:54:00 AM  
Blogger Unknown said...

To Naomi's family:
Thank you for sharing this story with other families. I admire your courage and your strength.
Faye (mother to Georgia)

8/01/2006 02:07:00 PM  

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