Sadie S

22 August 2020

Please do not send any food items to Sadie

Story Written August 2020

Sadie is a sassy 4 year old with a huge personality. Sadie has suffered with gastro problems since she was born and has spent over a third of her life in hospital. She has had around 90 admissions to hospital in her little life and over 20 general anaesthetics. All she has known is feeding tubes and monitors and unfortunately a lot of pain. After years of trying different feeding tubes, feeds and gut rest we are now in the middle of a very long admission to Great Ormond Street where she has now been diagnosed with a very rare condition of chronic pseudo intestinal obstruction. She is currently dependent on TPN into a central line and is awaiting an ileostomy this week.

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Imogen R

22 August 2020

Story Written August 2020

Immy was diagnosed with ALL in July 2016, aged 6. She had 2 and 1/2 years of treatment, but relapsed six months later in July 2019.  She has spend the majority of time since then in hospital. She had chemo and immunotherapy treatments transfused 24hrs a day for 28 day cycles, between July and November in Addenbrookes. Then she spent 100 days in complete isolation in Bristol (500 mile round trip from home) having a Bone Marrow transplant.

We came home in March, straight into lockdown! Immy was recovering slowly, then in June she developed a rare, serious post transplant complication affecting her kidneys, so we are currently still going to Addenbrookes twice a week. We are having to shield until January so this will be our second Xmas without seeing family. No school for siblings either, so cabin fever is setting in. This is day 240 of isolation and no hugs from family for us!!

Imogen has a twin sister Charlotte (10) who was going to be her donor, but it turns out they are identical (a huge suprise) so she was not a viable option and her sister has a greater risk of developing too. Imogen has a brother Liam (11) who was diagnosed with Arthritis five years ago, in multiple joints including his eye. He has had a cataract removed and is having further laser surgery in Oct. He has frequent hospital visits, has high anxiety about his meds and is very needle phobic! 

Thank goodness Immy is a real trouper, she is unbelievably co-operative with all her pokes and procedures, much to our relief, so grateful for that! She is just amazing, and such an upbeat, comedic character, a real inspiration.

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Nimrit P

22 August 2020

Story written July 2020

My daughter Nimrit was born on the 29th December 2013 and was diagnosed with MEN2B in october 2017, but has struggled with the symptoms all her life. I am a single parent but I am not alone, I am so blessed to have such a wonderfully supportive family and friends who have been by our side.

At 6 months my daughter started to get urinary tract infections, she didn’t respond to oral antibiotics as her infections were always ESBL ECOLI. When I mentioned to the doctor at 1 years old that she didn’t open her bowels for 5 days, I was told it was fine and that it was normal.  The days between a dirty nappy got longer and longer, from 5 days to 7 and then 11 days. UTIs were occurring regularly and trying to capture wee samples from a baby was so stressful.

Going into hospital also became a regular thing and it wasn’t long before my daughter would realise where we were going in the car and she would cry and beg for me not to take her. We would spend weeks on end on the children’s ward at Whipps Cross Hospital in East London. Nimrit was on 8 sachets of Movicol and other liquid syrup medication too and getting that into a 2 year old was not easy, so she had an NG tube fitted.

The amount of medication would often make her feel sick and the NG would often end up coming out, which only meant one thing, another visit to the hospital to be held down for the tube to be inserted again. It was a never ending cycle of UTIs, cannulation, hospital, antibiotics, medication, NG coming out, back in hospital….

Things then got much worse when I had to take her in for manual clean outs, under anesthesia. I think this was one of the hardest times for me, seeing my daughter laying motionless, not reaching for my face to touch for comfort or calling my name. After numerous clean outs they took a biopsy and they also fitted a permanent peg in her stomach. I was told the results of the biopsy were clear. Then 2 months later I took her to A&E because it had been 16 days since she had opened her bowels, which is when they looked at the biopsy results again and was told it was abnormal and showed Neuronal intestinal dysplasia (NID).

She was going to have an ileostomy bag fitted after her consultant returned from a European conference. He happened to discuss her case with a professor and he advised that as her results showed NID, they should test her for a few other things. She had the tests that were suggested and 8 weeks later in early September 2017 she was diagnosed with Men2B. She had her thyroidectomy at GOSH on the 6th Nov and is now back and forth to the hospital checking the calcitonin levels.

She has never had tears since birth and I thought this was unrelated.  She had 2 surgeries to unblock her tear ducts which were unsuccessful. The next surgery would be to break a bone in her nose and do a complex surgery, which would have left a scar on her face; with all the other problems she was having with being constipated, I decided against the surgery, and I am glad I was guided this way, because it turned out this was not unrealated, but a symptom MEN2B. Nimrit also has unrelated Talipes (Club Foot).

With all that has happened to her, she is very traumatised but still going strong.  My daughter is very aware of everything and earwigs into every conversation I might be having about her to someone. So now every time my phone rings, she says, ‘Mum who is it??? What they say??’. I know at the back of her head she wonders whether it’s the doctor calling.

From a very young age she started understanding things, my phone would ring and I would be told that based on her urine sample, she has a UTI and that she would have to go on IV antibiotics, so that meant a trip to the hospital, I would have to lie to get her out of the house. The worst thing was that I knew Nimrit was very hard to cannulate and that would mean she would be poked many times with a needle.  It would break my heart have to be the one helping the doctors to hold her.

Her consultant, the play specialists and surgeons are all great and very supportive and I find comfort in their continued support. When Nimrit plays alone she talks a lot about what she has heard, big words like my doll is constipated and had a biopsy, hearing her say this is very upsetting.

She is very cautious around people, even close family members, it has taken years for her to get close with my siblings, even then she very rarely leaves my side but over time has become comfortable with family now but at times Nimrits anxiety can be bad. Nimrit has good days and bad days. We take each day as it comes.

Update 2nd September 2020

Nimrit is having a pre opp assessment on 4th sept and me and her will need to get our covid test done. I know she will hate it as she hates swabs being done, so I am dreading it. All being well on the 7th she will have 2 surgeries done, her masses (tumors) removed from mouth and her throat procedure and airways checked. It’s all come at once but on the 17th we will meet her oncologist to discuss treatment and find out more about it. Nimrit has told her siblings (cousins who mean the world to her) about PostPals. Unfortunately she won’t be going back to school due to the surgeries.Please keep her in your prayers God bless and thanks so much to you all.

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