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 28th February 2024

We would like to thank everybody for all our post recently all is very much appreciated.

Evia’s last MRI scan before Christmas came back all clear so all good news.

She is excited and nervous about starting secondary school this year. Am sure this will bring Evia lots of challenges but am sure she is up for the challenge and it will probably scare mum and dad more!

She has recently finished her first job role of being the Junior Civic Mayor of Doncaster where she got to go to lots of events including, her favourite, meeting our new King and Queen and being able to do a speech for them.

Evia interests are: she loves James Arthur, and she does like any kind of music, Harry Potter, Squishmallow toys, Tonie figures and fidgets. She loves anything girlie especially nail vanish and body sprays.

Elliott update.

Once again, thank you all so much for everything you do.

Update 4th October 2022

We would like to thank everyone for the post we have received.

Thank you to everyone that shared the social media post about Evia’s wish to meet James Arthur. She loved meeting him and listening to his concert, she has since been to another one of his concerts. 

Evia has an MRI scan booked for October. This is the first time she is going to try it being awake, we don’t  know how she will manage to keep still as she is a wiggler and likes to talk. She is going to listen to her favourite singers. Hopefully she will  manage it, if not they can rebook it. 

Evia and Elliott have both settled back into school well.

Update March 2022

Evia would like to say thank for her recent post especially her birthday cards we keep them all in a box and she goes through them every day.

Evia has been very well, at the minute everything is stable she will have another MRI scan later in the year to see how things are going.

She has recently started at Cubs which she loves, she went on her first ever sleepover away from Mum and Dad at camp. Her brother was there so am sure they both looked after each other.

Update 21st June 2021

All stable at the minute, no changes.

Update 8th April 2021

Evia would like to say thank you for all her birthday cards and gifts, she really enjoys the letters and listening to what people have been doing.

They both really enjoyed the Easter Zoom party.

Update 8th February 2021

We would like the thank everyone for both Evia and Elliott’s Christmas gifts and cards, they’ve loved every single one, putting each Christmas card up in their bedroom.

Healthwise  Evia is doing well, stable at the minute.

Update 12th July 2020

Nothing much has really changed health wise we are still waiting for Evia’s next MRI date to come through. Due to the virus it has been delayed, she was due in February time, so hopefully it will be soon.  We did manage to move house around 3 weeks ago, which is loads better, as we now have a bigger garden, which has helped loads. 

Update 22nd April 2020

Evia and Elliott would like to thank everyone for their letters and gifts they have received. Evia has kept all her birthday cards she going to put them up in her bedroom when we move as lots of them are tactile. We were due to move house before the lockdown started which has been put on hold for now. 

Evia health wise she has now had her port took out which am so pleased happened before all this virus started. She was due a MRI scan in February, we are waiting for an appointment hopefully be soon. She is getting really good at her braille and now she teaches me.  

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.

Any food sent to siblings must be halal and suitable for vegetarians.

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 3^rd 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 22nd December 2022

Today our princess Anoosha lost her long 9 year battle. She has returned to the Lord. Anoosha was the sassiest, bravest little girl I had ever met. She fought through every setback like a soldier. She brought joy to so many lives.

Update 4th October 2022

Anoosha remains in hospital. She has been bouncing in and out of PICU, HDU and onto the main ward. 

Update 24th March 2022

Anoosha is 8 months post bowel transplant and is still in the hospital. We have different hurdles to get over but we are getting there.

Anoosha remains her smiley, cheeky self and is thriving.

She currently has a separate peg for free drainage and a Jej for feeds. She still has her central line and is on fluids overnight. Her stoma was not able to be reversed and we never got a large bowel transplant.

This child amazes me every day with her strength and courage. Even when in pain she smiled through it.

Next step is hopefully to get her walking after they do her Achilles surgery but fingers crossed home before that.

Update 4th June 2021

First of all I want to say a massive thank you to Anoosha’s donor family where ever they may be. Your selfless act has given my princess a chance to live. So much love to you guys.

I am so proud to be Anooshas mum, this girl is seriously something else. She never fails to make me smile.

A huge thank you to my husband and kids. We had no choice in this but you kept us going. 7 years we have been split as a family and our bond is stronger than ever. 

Update 2nd June 2021

She finally came out of theatre at about 4.30am and she’s in intensive care. The surgeon said they were only able to get a small bowel and a partial stomach in as there wasn’t any room. Her abdomen has been left open for now.

Update 2nd June 2021

So today Anoosha got her transplant call. Anoosha is currently sitting in her gown waiting to go down (should go by 7ish) Can everyone please pray the transplant goes smoothly. I don’t even know where I’m suppose to be and only one parent is allowed. 

Update 21st August 2020

Anoosha has been in hospital for the past 5 years with most of it in Great Ormond Street Hospital.  We are current on our 8th month in GOSH. All she craves for is a quality of life with her family. Anoosha is constantly septic, which weakens her completely and puts her back. 

Update 1st October 2019

Currently still active on the transplant list. We have been an inpatient in our local hospital since April awaiting nurses for home. Infection in the line is still a battle and she is always on antibiotics.
She is a very happy little 5 year old who loves life. Whilst an inpatient she is able to go to our local hospice for 2 mornings a week.
She is becoming more aware of her problems now and she questions why she is always in hospital and why she can’t eat!
She always looks forward to receiving mail and opening presents.

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.

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 22^ndof 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.