Lorelei Madison Jayne Davis Aka Lolly 5-4-12 to 26-5-13
Lorelei is my daughter, this is her story.
Lolly had always suffered from major sickness, loose nappies poor weight gain and being prone to infection, she spent weeks in and out of the GP’s surgery and hospital in her first 5 months, first infections and viruses were blamed then it was thought to be her milk making her so sick, she had medicines, special milks and was put under dietitians to help when it came to feeding her solids, Dr`s thought she had a Milk protein intolerance so all her food was organic or home made to make sure she wasn’t having anything to make her ill yet still she was poorly.
Lolly was finally admitted via GP referral to Birmingham Children’s Hospital on 25th November 2012. Daddy and Mummy got tired of all the changes making no difference and not helping their little girl, she was underweight and sick all the time,her stomach used to swell up and her nappies could clear a room and that’s no joke!!
Throughout all this though madam used to smile, to see her you would think she was a normal, very happy smiley baby, just a bit small in size.
Mummy and Daddy started to bug the Dr`s at the hospital about the vomiting and the nappies, Feeding tubes (fed through her nose to just under the chest bone) weren’t helping, Lorelei hated them to start with! Mummy used to save vials of the “Chaos Nappies” as they were known and chase Dr`s and nurses with them to look again and see it wasn’t normal! Finally in December 2012 Lolly was referred to the Gastro Team.
After LOTS of blood tests, stool samples, CT scans, Barium Swallows, Endoscopies, Colonoscopies, Heart Echo’s & X-rays the Dr`s came back with a rough answer…It was Auto Immune Enteropothy, (AIE) this is where the immune system (that normally helps fight off illness and heal the body) was attacking Lorelei in her oesophagus, stomach, intestines and bowels. The Dr`s couldn’t tell mummy and daddy much about why they just kept saying how rare and how severe it was in their little girl and how they didn’t know much about it and why it was happening or how to fix it they just kept still doing more tests tests……
In early February 2013, Lorelei was still no better in her weight, the Dr`s had Lolly taken into surgery to be fitted with a central line (Hickman Line) it was a tube inserted through the chest and fed into an artery near the heart so lolly could be fed vitamins and nutrition her body was lacking straight into her bloodstream (this is known as Parenteral Nutrition) because the (AIE) was stopping her body from doing in the natural way, not long after Lorelei started to vomit blood.
February 12th she had started to bring up a lot of blood and needed more surgery. This time on her intestines, the Dr`s wanted to see what was happening inside. They found she had Malrotation (twists) and they needed re positioning. Her appendix was removed and The surgeon also took away a section they found that was “extra” and had scar tissue coming from it that was trapping a loop of the intestine. Using this “extra” section the Dr`s looked more closely at what was happening to Lolly.
This is when they told Mummy and Daddy from examining the intestine Lorelei had IPEX-like AIE. IPEX only affects boys in normal circumstances, there has only been 1 other girl in the UK treated for IPEX-like AIE. The cure for IPEX and IPEX-like AIE was a Bone marrow transplant, for this Lorelei needed to be moved from Birmingham to Newcastle where apart from London’s GOSH the specialists for this kind of Illness and procedure are based. Lorelei started to go downhill in her condition and was placed in HDU, she was given very strong painkillers a (cocktail of morphine and ketamine among them) but they wore off quickly and lolly had withdrawal symptoms (watching the person you love going through withdrawal from something that should have helped tore us apart), Dr`s acted fast and got Lolly sent to Newcastle with her parents in tow, that was March 2013.
Lorelei had to wait for a Cord Donor fitting to her blood and all the weird stuff in blood to match with herself (mummy and daddy were tested but didn’t match) and during this time Lolly really started to struggle, her hair had been pulled out, she had more and more medicines more and more tests including brain wave function tests and constant x-rays, she had Dips where she would be so overloaded her body would stop working properly so the crash team would be called and she would be sent to ICU overnight and be well again by morning! Her parents had to make choices several times that were ones no parent should have to make, High risk meds which may not work and result in Lolly dying or Keep her in a hospice indefinitely in the condition she was in for the rest of her life (no idea at that time of what lifespan she would have). Lorelei was in desperate need of a transplant but if she had had it at the times she was sickest (she was worse and worse daily) she wouldn’t have survived the conditioning and chemo, But EVERY TIME people thought the worst Lolly Smiled her beautiful smile and fought her way back up.
Finally in April 2013 the little family were transferred to the Bubble Ward, Mummy and Daddy were no longer allowed to kiss their Warrior, NO facial contact was allowed, The Bubbles were Air locked and air pressure maintained, No Opening windows or going outside for the Bubble Kids, only 2 Parents and ONE other family member ONLY were allowed in the Bubble with their child, Thoroughly clean and washed hands and forearms several times through several airlocks and with separate shoes for the ward to those for your daily wear, hairnets, gloves and aprons on at ALL times,
Lolly went through her Conditioning and Chemotherapy, She got bad and good days, Finally she had a match!!!! It came all the way from a baby girl born in America! The family were excited and signed the paperwork!! Lorelei with all her Dips had a 50/50 chance. She went through her transplant and then it was a waiting game… waiting for bloods to start telling the Dr`s what lolly’s cell count was… that’s how you know if the body is accepting the donor cells.
Lorelei got an infection a couple of weeks after transplant as her family were waiting for those numbers to climb, she got really sick really fast, she was finding breathing hard and was put on oxygen, it wasn’t enough, Lolly was moved to ICU, Put into an induced Coma, put on a breathing machine called an oscillator as a ventilator wasn’t helping, she started on a dialysis machine to help take off some of the 1litre+ extra water out of her body (from her blood) and was hooked up to 25 other machines via her central line and canulars to help give her all the sedatives, medicines, pain relief she needed.
Sadly 6 days after going into ICU Lolly’s blood pressure became unstable, the Dr`s and nurses couldn’t help any more, they had done all they could.
On May 26th 2013at 12pm the decision was made to let Lolly go before her body went in to cardiac arrest and she suffered more, Lolly’s Mummy, Daddy, 2 nanny’s and granddad were with her that day, she stayed in her mummy’s arms till she had gone at 13:57pm, she was dressed in a beautiful gown and her mummy and daddy were allowed to cuddle their girl on a bed and fall asleep as Lorelei had shared their bed many times before.
Everyone had cuddles and time alone with their warrior before mummy and daddy took her down to the Chapel for the night, Lorelei was visited by her parents and Nanny Penny the next morning, then they made the decision not to disturb her again, finally it was time for Lolly to sleep
Lorelei was laid to rest on June 12th 2013 and has been visited every single day by her mummy and daddy at least once a day.
This is Lolly’s story, I am Lolly’s Mummy, She is my Warrior Princess and I am the luckiest mummy alive to have had such a strong and amazing little girl x
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