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 9th September 2019

Evia and Elliott would like to thank everyone for the cards and parcels they have been receiving, they really enjoyed the post pals party, it was great to meet some other post pals families and everyone involved with post pals. 

Evia has just started year 2 and is settling in well she has recently had a MRI scan which showed everything had stayed the same which is good news. We are currently waiting for an appointment to remove her port which will hopefully be soon, she will then have a MRI every 6 months unless something changes or we are worried. 

Evia’s brother Elliott has just started reception, we have had a few tears at drop off but I am sure it won’t last long, he enjoys it once he goes in.

Update 16th June 2019

We would like to say thank you for both Evia and Elliott’s monthly parcels and their fortnightly letters and everyone else who sends post. 

Evia had one hospital trip this month for her ears. We were getting them checked and they needed cleaning out but she became a little anxious and wouldn’t keep still, so we had to have a trip to theatre to go to sleep so they could be cleaned. They had a good look at the left ear that was causing her problems but they said it all looked ok, so hopefully at her next scan which is in July all should be clear and if the tumour has stayed stable we should be hopefully getting her port out soon. 

Thank you once again, hopefully see lots of you at the party.

Update 28th March 2019

Evia and Elliott would like to thank everyone for their cards and gifts they have been sent. Evia received loads of cards for her birthday which she loved, she still plays with them now asking me who they are from. 

Evia has recently just had a MRI scan,  at which they  said the optic gilomar has stayed the same as last time, which is good news. They did find something on her left ear which is new, they are not too concerned about it at the minute, but want to re-scan her in 3 months. Then she may have to have a operation on it, so they have decided to keep her port in for a while longer, we were hoping it would come out this time. 

Update 28th January 2019

All of us would like to thank you for all the Christmas cards and gifts we have received. We have had lots of fun opening them all. 

Evia is doing well at the minute. She had another ear test which they said has improved since last time. She has a MRI scan due in March – hopefully all will be ok and we can then talk about having her port removed soon.  

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 too 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 3rd open 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  just 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 by 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.

Update 3rd April 2019

Anoosha has now been active on the transplant list for six months. She’s awaiting small & large bowel, liver, stomach and pancreas. She’s been an inpatient at Great Ormond Street Hospital for 2 years now. She is constantly fighting sepsis (almost every 2-3 weeks).

She is waiting to start immunoglobulin treatment.

I want to thank everyone who is sending mail out. We just need the transplant call to come quick.

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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.

Update 6th August 2019

Isla has now finished her chemotherapy and has had her Hickman line removed. Her recent MRI scan has come back looking clear. Obviously she will be having very regular scans and check ups with oncology. We are hoping she recovers from the prolonged treatment but I know psychologically this will take a long time. Hopefully her hair will start to grow back now and she can begin to enjoy normal childhood activities. We have recently been swimming for the first time in 17 months, it was lovely to hear Isla giggle. Hopefully we can enjoy a family holiday this summer and get the recovery we all need. We can’t thank post pals enough for helping us through some very dark and difficult times. 

Update 10th February 2019

Isla has now completed the 27 weeks post-op chemotherapy and moving on to maintenance which is once a month. She has been so poorly with the side effects of the medication and we have to stay in hospital each treatment to manage her sickness.  She is still struggling psychologically with her Hickman line, but we are looking forward to having a bit of a break between treatments with just nurse visits weekly for line flushing and dressing changes. Just trying to keep her as healthy as possible as there are so many germs around this time of year. She could end up in hospital with just a cold, her immune system is not as good as other children’s due to the chemotherapy. 

Update 19th October 2018

Isla had her left kidney successfully removed along with the tumour in May and is now 20 weeks into an intensive chemo regime. It was found she has nephroblasmatosis in the other kidney that needs treatment or another tumour could grow.  The chemo drugs she is given make her really poorly and we are yet to find any drugs that help with the sickness. Due to this she has developed some huge psychological issues relating to her Hickman line and vomits every time it is accessed or chemo is spoken about. Isla has lost a lot of confidence and trust. She is having a really hard time at the moment.

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