Evia S

20 June 2018

Story written 2018

Before Evia’s second birthday we noticed she had started to lose her sight. We were back and forth to the hospital where Evia had numerous tests and scans. Evia was transferred to another hospital where they fitted her with a port and started to administer IV chemo. After 18 months of chemo which made Evia sick and lose her hair, she then had 9 months off. They removed her port but at her next scan they had to put the port back in and re-started chemo, which she now has weekly.

Evia had a second round of chemo which lasted for a year. She finished this at the end of January. Evia now has to have regular scans and at the moment she still has her port. Evia has NF1 which caused her to go blind but she refuses to let this stop her.

Update 18th September 2018

Evia would like to thank everyone that has sent her letters and gifts, she loves feeling them all and listening to us read them to her. We will keep them all in her craft book she can now remember what some of the letters and cards say and who they are from.

She recently had a MRI scan which was good news, they said her tumour is stable but they are keeping her port in at the minute just in case as they took it out to early last time and she needed it put back in.

We have since learned that the tumour has damaged the nerve which tells her when she is full and this explains her obsession with food. She has just got a trike so we are hoping this will help with the exercise.

She recently had her ears tested they are concerned with her left ear so may need grommets or a hearing aid in the future.

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Anoosha M

20 June 2018

Please do not send food or latex

Anoosha is a 4 year old full of life. She was 11 days old when she was diagnosed with a heart condition (TOF). By the age of 4 months she had her 3rdopen heart surgery. When she was 4 months old her bowel twisted and she needed emergency surgery called a Ladd’s procedure. At the age of 1 she started breaking her bones by us picking her up and was diagnosed with Rickets. Since the age of 1 she has been completely TPN (IV feeding) dependent for 24 hours a day. All her medication has to be given IV straight into her heart.

When she was 3 she had a cardiac arrest and ended up in intensive care for three weeks. She now has a loop recorder fitted in her heart to monitor her heart rate. She has had about 5 intensive care visits due to arrests or line infections.

She has a gastrostomy on free drainage and a disconnected stoma. She is due to have her colon out in the next few weeks.

Anoosha has been in hospital for a long time.

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Isla W

20 June 2018

Our beautiful daughter, Isla, was diagnosed with a Wilms’ tumour on her seventh birthday. Our journey began in April this year when Isla had blood in her urine. She was prescribed antibiotics but they didn’t work. Following lots of different tests, where the results kept coming back as normal.

After we discovered a swelling on her left side she was sent to the hospital for an ultrasound and MRI and was diagnosed with a Wilms tumour in her kidney.

Since then Isla has had four weeks of chemotherapy and she’s due to have her kidney removed on 22ndof May. The stage of her cancer is still unknown, so we don’t know how many more weeks of treatment she’s going to have.

She was so healthy until now and we didn’t have any idea that the cancer had been growing slowly for all this time. She is now feeling the side effects of chemo and the last month has been extremely difficult for Isla and it’s going to be a long journey for her.

Isla’s sister Enya was also a member of Post Pals and underwent chemotherapy for a different condition.

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