Our Pal - Tona-May L

**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 18th November 2024

Tink and Rory have had a better year, although they still both suffer from anxiety and trauma related behaviours from what they’ve been through. Tink has enjoyed college and loved attending her college prom and various activities put on by her disability group. Rory has been in a theatre show and really enjoyed it and has grown in confidence. He had to sing and dance and had a solo speaking part. He still really struggles at night but is managing a few hours sleep each night in his own bed.

Both children enjoyed our big trip to Canada. We had a great adventure and made a lot of fabulous memories. Tona would have loved it too and we bought small souvenirs in each place we went to that we thought she would have liked.

Hoping the next year will continue to bring them healing and peace to grow in themselves and that Tink’s health continues to be stable.

Thanks so much for all of the gifts and cards that the children receive. They continue to get so excited when they see a parcel or letter addressed to them. Rory calls his regular senders ‘my friends’ and talks about them like he knows them to others.

Rory loves animals, hot wheels, Lego, theatre/musicals and Disney.

Tink loves Princesses and Disney Descendants. Pink and sparkly thing an musical theatre and Disney.

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. 

Tink’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 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 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.