Isabella H

28 October 2018

Isabella was a happy and healthy 7 year old girl.

In early March this year she came back home complaining of back pain. I gave her some paracetamol, as the teacher said that she did not fall down or hurt herself. The pain remained for a few days without getting worst or better, then one day when it was snowing in the middle of March, Isabella was unable to walk, the pain in her legs was excruciating. She could not stop screaming. I went to the GP and they agreed to book a visit for an Orthopaedic consultant. Time passed by and Isabella felt worse and worse. She was in such pain that one day she vomited from the pain and at that point I got fed up waiting for a referral and I took her to A&E. Twelve hours later Isabella was diagnosed with ALL (Leukaemia). Two days later she started the standard protocol. After eleven days she was allowed to go home for a few days but after two days she was admitted again and her protocol was changed, as from the cytogenetics it was discovered that she had a sub type of Leukaemia called IAMP21 which was more aggressive and needed stronger treatment. She was therefore moved to Protocol C. Being on the highest protocol our options were reduced, and if the chemo was not working she would have to undergo a bone marrow transplant. However, at the end of Phase 2 in August we were informed that Isabella was reacting and we could carry on with the standard protocol. Isabella is now mainly at home and doing Phase 3 (Capizzi Interim Maintenance). She went back a few half days to school, but she is generally very tired. She lost all her hair and she is very upset about that and she is looking forward to being “herself” again. However, she can now move and she has not been using a wheelchair since July.

Update 20th August 2020

Isabella will be finishing her treatment the 4th of September so she is ready to move on. She is still experiencing some problems in particular due to the amount of weight that she gained during treatment and her bones being weaker than what they should be. We still have a long path ahead of us but hopefully things will continue improving.
Thank you all for the amazing letters, cards and presents, they helped Isabella and Sophie a lot these years especially at the beginning of our journey where the girls struggled to accept the changes in our lives and recently during the long months we could not leave home due to Covid-19. Every times the post arrived there was so much excitement. 
What you do is just amazing xxx

Update 23rd April 2020

Isabella is now less than 5 months away to end of treatment. She is doing ok, and before the Covid-19 crisis she was going to school 3 weeks every month. This is caused by her struggling with her monthly steroids dose. Isabella’s bones have been badly affected by leukaemia first and by the steroids after. 

During her monthly dose of steroids Isabella is unable to walk and she is in terrible pain for around a week. This has been made worst by the fact that Isabella gained a lot of weight in the last year (almost 20 Kg). 

We tried an infusion to strengthen her bones, however the infusion made Isabella badly neutropenic for over 3 weeks forcing us to interrupt her treatment for leukaemia. In order to avoid this in the future, we have now interrupted the infusions and we will restart it once Isabella’s treatment is finished. 

Thank you very much for all the cards/letters/presents that Isabella and Sophie are receiving. This really help during our 12 weeks quarantine.

Update 18th September 2019

Isabella has been okay lately. She finished a very hard, phase 4, part of her treatment Delayed Intensification in January 2019 and she started Maintenance, phase 5, a few weeks later when her numbers recovered. If all goes well, maintenance will last until 04/09/2020. 

After a few weeks of maintenance Isabella was able to return to school part time, slowly building up. In early September she was back full time, however after a few full days, she was admitted to the hospital due to an infection. 

In May, Isabella managed to have her central line removed. This was very important for her, as she developed an allergy to all types of dressing and she was in terrible pain. It was very hard for her because she needed to prove to the medical team, that she will cope with weekly finger pricks and canulas inserted when she needs antibiotics or her monthly chemo dose. So far she has been amazing, coping well with all bloods and canulas. 

She is still not able to start everything that she was able to do before, for instance she cannot go back to cubs, as her immune system is still too low for all the activities involved, but she is going back to some normality. We even managed to go away for a few days on holiday to Scotland and despite Isabella spending most of her time in a wheelchair, as she still struggles walking long distances, she really enjoyed her first holiday since diagnosis last year. 

I would like  to say a big thank you to all people that have sent cards and presents to Isabella and Sophie. Every card represents a smile and I am really grateful for this.

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Ava S

28 October 2018

*Ava’s sister Freya has a severe peanut allergy, please do not send any items containing peanuts to this family*

Story Written 2018

Ava was starved of oxygen around the time of her birth. She was extremely poorly as a newborn and was rushed to intensive care for specialist treatment. Unfortunately, Ava sustained a massive brain injury and suffered lots of seizures. Her prognosis was not good, so on the advice of the hospital we switched off Ava’s life support machine and prepared for her to pass away. However, this determined little girl decided that it wasn’t her time to go and has decided to show the world just how much love and joy she can bring into everyone’s lives.

Due to the brain damage Ava has, she can’t walk, talk, swallow safely or use her body the way it was supposed to. She requires full adult support 24/7. She is fed through a gastrostomy tube into her tummy, is suctioned frequently to remove the saliva from her mouth and airways, and is oxygen dependent.

Ava has fought sepsis three times and has spent time in intensive care due to a twisted colon, which was removed and she lived with a colostomy bag for nine months before surgery successfully rejoined her bowel, and then again for a respiratory arrest.

Ava has lots of medications during the day and often uses a nebuliser to keep her lungs healthy.

Despite all of these problems, Ava is a very happy and sociable little girl who is loved by many.

Update 20th August 2020

Ava has been reasonably healthy lately. With the whole family in lockdown we were able to stop a lot of bugs coming into the house and this has had a huge benefit on Ava’s general health. 

She had a hospital admission in February where she received IV antibiotics for a chest infection. We work really hard on her chest therapy and nebuliser routine to keep her lungs as healthy as possible. 

We’ve had a few “virtual” appointments due to shielding and being in lockdown, since restrictions have lifted, we’re still being extremely careful as Ava’s respiratory system is so vulnerable we need to protect her as much as possible now before winter germs/viruses reappear. 

So we have exhausted our Disney DVD collection and busy ourselves at home, but when we start getting a bit claustrophobic we venture to the grandparents house and enjoy some fresh air in the safety of their garden.

Update 7th July 2020

What a strange few months we’ve had! Lockdown has been a very different experience for us all, however we’ve stayed safe and Ava has been really well.

I think the slower way of life and little exposure to every day germs has done her the world of good. It’s been quite a challenge to try to complete Ava’s care/therapy needs, along with her home schooling and her sisters homeschooling schedules too, our days got very busy, very hectic and we felt completely overwhelmed with it all so had to slow things down and not stress about what wasn’t finished. 

Due to shielding Ava, we were lucky to have a small garden to enjoy some sunshine and fresh air so didn’t feel completely trapped inside the house. 

We still can’t believe that our amazing girl turned 10! It was a huge milestone we never thought we would see. 

Ava celebrated with lots of Frozen 2 decorations and cake. It was a totally different day to what we had originally planned, so hopefully we can make up for it with a big party next year. Huge thanks to everyone that sent Ava a birthday card and/or gift. It’s so very thoughtful and we feel very humbled that so many people cared and sent best wishes in her direction.

I must apologise for the lack of personal thank you’s to each individual because since Ava’s birthday we welcomed a new baby girl into our family and our days have been busy on a different level. Girl number 4!! Millie Faith is adored by all her big sisters and has now completed our family. Ava spends lots of time looking, smelling and having a feel/cuddle with Millie. 

Much love and a huge thank you again to everyone who sends post in our direction. The girls really appreciate the kindness and gives them a much needed boost.

Update 27th November 2019

Ava had surgery on her tummy to remove a surgical mesh used to hold her bowels inside her abdomen (after surgery in 2016). She did absolutely amazingly well to recover so quickly after the operation, but sadly her incision opened and we’ve had to dress it daily for the last 4 weeks to get it to heal. All this time off school recovering but hoping to return back part time in December to enjoy some of the fun before Christmas holidays begin. 

A big temperature spike (20th Nov) in the middle of the night caused Ava to have a big seizure, and as predicted wouldn’t stop after her rescue medication so we had to call 999. After a fabulous check over by the paramedics and a few phone calls to the children’s ward, we were able to keep Ava home, safe in her own bed to recover, and she’s been fine since! 

 

We have some lovely Christmas events coming up so will let you know how those go soon!  Ava, Ruby and Freya have continued to receive such wonderful monthly projects, each gift has been perfect and you know are girls so well. 

Thank you Narelle, Amy and Tasmin for your kindness and generosity. 

Big shout out and thanks to Becky B for the continued amazing Disney postcards. They really do cheer Ava up and we love finding out what you’ve been up to. 

And to each and everyone for the continued support and love. 

Ellie E for the lovely photos of your pets, and little bits that you send each month.

Rebecca F for the most delicious hand cream.

Kayte for the handmade bracelets

Thanks you to everyone who sent Sainsbury’s cards. 

To the Girl Guides who created Ava the most incredible super hero cape and story. It was fantastic!!

Sally Plummer for Ruby’s lol watch and balloon 

Bev for Ruby’s flower fairy pot and book

Emma  for the emojis

Narelle for Ruby’s  barbies and ty beanies

Albie Lockie from NZ for the lovely letter/ origami butterfly/scratch and sniff stickers.  Ava thought it was very funny that your dog was trying to stand on her letter

Emma Hendriks from NZ for the post with Disney quotes. 

Dottie mail

You’re all amazing !!!! 

Update 1st October 2019

Thank you everyone for the continued support in the lovely post we have received recently, the excitement certainly hasn’t worn off yet! 

Extra special thanks to, Becky B, Narelle, Tasmin,  Amy, Ellie E, Geraldine, Beverley, Audrey, Tashja Victoria and to GIK for the amazing box of Disney goodies!  Dottie the Dalmation, Tales of Mr G, to those who have kindly sent Disney Pixar cards from Sainsbury’s, and M&S little shoppers, we can’t thank you enough. 

Also a massive thanks to everyone who donated for Pals to receive a Wheelchair Barbie, it’s the most played with toy this past two weeks by everyone who’s been to visit us! Ruby absolutely loves her. 

Ava’s health hasn’t been too bad, in complexly needs terms, however after a few weeks of mystery symptoms and episodes we found out that she had grown a nasty group C Streptococcus bacteria on her chest. So we’ve had to up her chest physio routine at times, and given a few courses of antibiotics, which then has consequences of its own with her already delicate bowels/ digestive system! 

Really hoping that we manage to get on top of it soon before the horrible winter germs appear and compromise her even more.

We’ve also been monitoring her abdomen scar for a couple of months as it looked like a blister had developed, her surgeon suggested at first sight that it could possibly be a stitch sinus, which is very common for people who have surgical mesh, that an internal stitch irritates from within, and that once the skin opened, could be snipped and re-healed. Simple right?! However nothing is ever that simple in Ava’s world, the area has continued to increase in size, colour and appears to almost look like the mesh is being rejected, with the skin becoming very delicate and weepy. So having to be very sterile in that area now and hoping that infection doesn’t take hold. 

Update 7th March 2019

Since joining Post Pals we have been so lucky to receive the most amazing post. Every piece is read and truly appreciated. It has made such a difference in the girls’ mental health to know people think about them and really care. I don’t think we’ve ever seen them smile so much!

Huge heartfelt thanks go to:
Becky B – your postcards are just divine.
Victoria for the Valentine’s balloons and post.
Dottie the Dalmatian for my new teddy friend we’ve named Winter and your picture updates.
Fiona and Andy for the postcards.
Narelle for the most Ava appropriate monthly parcels.
Tasmin for Ruby’s monthly parcel. We loved the pictures of your dogs Sophie and Sapphire. We have a little dog called Bruiser. He’s almost 8 years old and is a Chorkie.
Audrey you sent the most wonderful Christmas book from NZ and recent postcard.
Amy G for Freya’s monthly parcel, she’s been meaning to write a thank you back but has had a huge increase in homework since starting year 9 at school.
Emma, Geraldine, Anna, Bear Hugs and Project Parent for your post and gifts.                                                                                                                            And to everyone else I’m bound to have forgotten including scout, beaver, brownies guide and school/college groups, your post has been wonderfully uplifting.

Ava has probably had one of her best winters ever in terms of her health!
Her Dad and I have worked extremely hard on keeping her chest as healthy as possible with strict physio, antibiotic nebuliser treatment and deep suctioning routine which was a success. She remains continuously on oxygen but only on a small amount, which for winter is fantastic.
Seizures aren’t usually too troublesome for Ava, but unfortunately we had one episode of her emergency buccolam medication not stopping the seizure, so we had to call 999 and ended up with a hospital visit.
This week Ava didn’t cope very well with one of the viral infections going about so ended up with another hospital trip and course of antibiotics, but she’s recovering well.

Ava attends a local special needs school. She absolutely loves being with her peers and thrives in the classroom when well. She’s learning to communicate on an eye gaze machine that she controls with her eyes. This technology is fantastic at allowing someone who cannot control any of their body movements the chance to speak.
We’ve had many appointments over the last two months: a respiratory review with a consultant at Addenbrokes, and a physio review where Ava has been measured up for her new Lycra suit and gloves. Once wearing these items she will be known as “Ava the incredible” as she’ll look like another member of the “Incredibles” family (Disney).

Sadly we had to say goodbye to Ava’s Great-Grandad as he passed away on New Years Eve, just a few months before his 90th birthday.
Ruby too has been busy, she’s been having regular hearing tests for the past year as she has hearing loss in her left ear. She finally had her hearing aid fitted and has coped amazingly with it and it’s made such a difference in her hearing!

 

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Chanel M

19 October 2018

Chanel’s brother has severe nut allergies, please do not send any products containing nuts to this family

Story Written 2018

Chanel was diagnosed antenatally with a rare congenital heart defect know as Hypoplastic Left Heart Syndrome with an Intact Atrial Septum – basically half a heart. She has required four open heart surgeries, the first being immediately at birth (The Worlds Youngest Ever Open Heart Surgery Patient), making medical history and paving the way for others born like her. Her most recent was August 2017 when she was 3 and half years old and was also the hardest physically and mentally for Chanel (The first Fontan on a HLHS/IAS in the UK).

Chanel has and continues to go through a lot in her life – she has been tube fed since birth, had a major stroke at 2 weeks old resulting in weakness to her whole left side and cerebral palsy (but learnt to walk at 2 and half years old with the help of a leg splint), had 24 operations and procedures in total, including 4 major open heart surgeries, but is the happiest, kindest, most beautiful little girl ever, always thinking of others. She is utterly inspiring and teaches everyone around her to always have hope. When Chanel deteriorates again she will need a heart transplant, but we take each day as it comes and have every faith that Chanel will deal with anything that may come her way with the same fight and determination she always has.

Chanel loves all things Disney, especially Mickey and Minnie Mouse and Princesses. She truly believes she is a real Disney Princess just like any little girl should. He favourite is Rapunzel. Chanel also loves Peppa Pig, taking photos, and board games with her two brothers.

Update 2nd December 2019

Chanel has struggled since the beginning of winter, with lots of bugs going around and she takes longer to get better than most but we have thankfully avoided hospital. She had her cardiac review and got another few months ok! She is so excited for Christmas now.

Update 1st September 2019

As of a few days ago and after being tube fed 5 1/2 years (since birth) she is now feeding tube free.

Update 21st August 2019

Apart from her new diagnosis of Epilepsy in January there has been no change health- wise, she has her 6 month check up October/November time.

 

 

 

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