Milo L

29 June 2022

Milo is currently undergoing treatment for B-Cell Acute Lymphoblastic Leukaemia. He was diagnosed in November 2021 after he didn’t bounce back from a chest infection as expected. He was refusing to walk, was very pale, had gone off his food and had a rash. His GP sent us over to the hospital for some blood tests. It was then we were told the devastating news that Milo has Leukaemia. This was made especially difficult as his little brother was due in 6 weeks later.

Like the true superstar he is, Milo has coped with his treatment and the arrival of his baby brother beautifully. In May 2022 Milo has entered maintenance treatment and is starting back at nursery for a couple of days a week in July.

Update 3rd January 2023

It is time for Milo to move on from post pals. While he is still in treatment, he is doing really well and the happy post can be diverted to those in much more need.

Thank you so much for allowing him to be a pal and for the wonderfully generous post he has received. It truly does make a difference when children are so ill.

Update 27th October 2022

Milo is in the maintenance phase of his treatment and is going well. He is in this phase of treatment until early January 2025. Milo attends nursery 2 days a week which will increase to 4 in January when his little brother, Dylan, joins him.
Milo has become obsessed with all things Toy Story and Disney lately. Though Paw Patrol, dinosaurs and vehicles ares still up there.
His brother Dylan is now developing his own interests and is Hey Duggee mad (just like Milo was at this age).

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Tona-May L

26 June 2022

**Tink is gluten and dairy free**

Tona was diagnosed with Hodgkin’s Lymphoma in October 2019 at age 14. She went through the first 6 months of treatment with relatively few side effects and went into remission. Sadly within 4 months she relapsed and had to have stronger chemo which made her hair fall out for the second time as well as making her much more tired and nauseous. Once no signs of cancer was detected Tona had a stem cell transplant to raise her chances of remaining in remission. Sadly; due to the intensity of chemo given before a stem cell transplant; Tona’s gut shut down and she also suffered a septic episode. She did recover from this and came home. She was still tube fed, having digestive issues and quite weak but enjoyed 5 weeks at home. Tona then caught salmonella from an unknown source and her already sensitive gut just shut down. She was admitted to hospital and also found to have a line infection. Despite antibiotics, within a week Tona developed sepsis and needed retrieving to the most local PICU to be stabilised.

Since this time (May 2021) Tona has not had a night home. After several attempts to re try feeding and several more septic episodes; Tona was able to come back to our local hospital on TPN which is nutrition into her bloodstream. Tona still has frequent episodes of septsis and has very few areas of access left in her body. 

Due to limited chances of being able to get her gut to work again without significant trauma and high risk; Tona has chosen not to pursue this and instead enjoy the time she has left with her family and friends making memories and then returning to the hospital each day for nutrition and medication.

Update 16th of August 2022

Thank you to everyone for the children’s post. It has brought them a lot of comfort and smiles to still be able to open letters and presents. Any post that Tona was unable to use or arrived after she died was donated to our local children’s hospital. She spent over a year there and it was often difficult for them to find age appropriate presents for her. These will hopefully put smiles on many more teenage girls faces.

Update 28th February 2024

The children are doing well following the loss of their sister, however they are still recovering from the absence of their mum while she was in the hospital  with Tona and having to be so grown up and go without for so long. 

They still get so excited by their post; particularly from their monthly senders who they know by name and love to hear about their lives and what they send. 

Charmaine’s interests are largely unchanged. She herself has many health conditions and learning disabilities which means she spends a lot of time  at hospital appointments or at home. She watches a lot of films and Disney tv, young teen stuff, musicals and still loves all things Disney. 

Rory still loves hot wheels and Lego but also anything science based. 

They both say a massive Thankyou for their post over the last two years and really benefit from feeling that someone is thinking of them

Update 5th of August 2022

Sadly Tona passed away peacefully in the night. She was surrounded by her family and appeared both free of pain and relaxed.

Please keep sending cheerful post to Rory and Tink, keep it light hearted as you would for any child.

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Aria H

09 June 2022

Aria started to suffer with DIPG symptoms in September 2020 but she wasn’t diagnosed until May 2021, on her birthday.

She had 13 sessions of radiotherapy and she regained her walking. She had a year of being an active normal child.

Sadly the tumour has started to grow again and she is having radiotherapy again. She is having 10 sessions.

Aria’s dream is to go to Disney. Maybe one day we can take her if she gets better.

Update 1st December 2022

“Our brave warrior, our baby girl Aria passed away peacefully surrounded by her family at 12:30am. We are absolutely devastated and we have no idea how we will carry on each day. But, we promise you that we will carry on for you. DIPG didn’t win, you won baby girl. You fought for so long. You now deserve to run free and be a little girl. We love you so much Aria”

Update 4th July 2022

Thank you to everyone who’s sent Aria and Paige letters and gifts. You have made both of them smile.
I’m sorry I haven’t been able to say thank you individually. Aria has been poorly after her radiotherapy and her tumour symptoms don’t seem to be getting any better. So she is struggling at the moment. Let’s hope and pray she will get better with time.

Thank you to everyone who have put a huge smile on Aria’s face. It means so much to us. You are all amazing.

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