the Dilnots be bedside with Leo at Sick Kids

Hello my name is Liz and I am raising money for our friends and AMAZING human beings - the Dilnot family as their life has been turned upside down in the blink of an eye. We are hoping to relieve the financial stresses that are quickly appearing so Carly (mum) can be bedside with Leo after receiving an incredibly RARE diagnosis (Pheochromocytoma) and Dom (dad) juggles the other three beautiful kids at home- effecting his business on the  (The Bamboo Warehouse) and take the kids to see Leo on the weekends to the Children’s hospital in Brisbane. 

Background:

Carly took Leo to the doctor on Friday 3rd November as he had been having headaches and dizzy spells and noticing his hands and arms were bright red and pulse racing. At the doctors they took his blood pressure and after two attempts the doctor tested the machine on himself and then tried a different machine as it was very high. The doctor immediately sent them to hospital to be checked out.

On arrival at the hospital they were seen quickly and the tests began – his Blood Pressure was 171/110 At this point and the doctors began blood, urine and eye tests as well as booking ultrasounds and contacting the renal team at Qld Children’s hospital (QCH).

By Sunday morning they believed they had a diagnosis which is the one that they are working with. They identified a tumour on his right adrenal gland and believe it is a Pheochromocytoma. This is a rare type of tumour and only occurs in 2 to 8 people per million. It is even rarer in children with only 0.2 to 0.8 diagnoses per million – so at it’s lowest range Leo is literally one in 5 million. The QCH transferred them by ambulance the following morning and Leo was instantly sent for more tests including dotatate(?) radioactive PET scan and an MRI before being checked into the Oncology ward which was an incredibly hard day for all. That evening the consultant showed them the images and Leo named the terrifyingly large red blob “Bob”. They were told the PET scan showed it was highly active (hence the colour) and was the reason his blood pressure was so high. “Bob” is releasing excessive amounts of adrenaline into Leo’s system, blood tests showed his levels were at 7650 while normal ranges are 50 to 540. In spite of his easy going nature Leo has been in a state of ‘fight or flight’ for weeks and his body has been working so hard to maintain it that his pulse rate and blood pressure are extremely high.

 Thanks to the PET and MRI scans the doctors were able to identify three smaller tumours – one below “Bob” and two on his other adrenal gland. While these are not active right now the doctors tell them they are likely to become active when Bob is removed and so the safest thing is to remove both adrenal glands.

Leo and Carly have been in hospital for two weeks already and will be for another 2 weeks minimally. They are gradually introducing alpha and beta blockers to bring his pulse rate and blood pressure down to safe levels so that they can operate with less risk to him. He is bed bound with short trips in his wheelchair allowed so that his blood pressure doesn’t rise too high. The highlight of their stay so far has been a trip for lunch with his sisters last weekend. Sadly the new medications and an IV drip this week have kept him hospital bound but he is making waves in the kids club when he isn’t too tired! Leo's has surgery booked for the 28th November. 

When “Bob” has been removed they will test it and see if it is malignant – Apparently it is unusual for these tumours to develop (especially when there are multiple) without one of about 5 particular genetic mutations so they will also test for these to identify if he is genetically predisposed to additional tumours later in life. This will also potentially impact on his three sisters.

So their current best case scenario is that the surgery goes well and Leo is able to recover and come home for Christmas, there is no genetic mutation and the side effects disappear – he will still need life long monitoring for other tumours here in Brisbane and will need lifelong hormone replacement for his adrenaline and cortisol which comes with it’s own challenges to consider.

If he has one of the genetic mutations then he is highly likely to develop other tumours in his life and if any of his sisters share it they too will need to be monitored for the rest of their lives.

While Carly's work are offering support so that she can stay with Leo for now, it is still causing significant financial stress as Dom has become sole carer for their three beautiful girls and his ability to work for his own business is obviously impacted. This is exacerbated by their visits to the Children's hospital at weekends which are so important for all of them but impact on his usual trading days. Since he usually has his best times in the run up to Christmas and his worst immediately afterwards this is going to be a very difficult period of time for them to manage.

Leo’s kindness and generosity have always been so strong, he has worked incredibly hard this year to make friends in a new school and has recently received his first grade As which made him so happy. He has become a much loved member of his school’s extra-curricular miniature show team and at their annual awards ceremony he received the “Happiest All-Rounder” award from his team mates for his “willingness to improve and overcome whatever obstacles [he] faced… consistently bringing a positive attitude to our group, making jokes and bringing people together” His positive outlook and willingness to have a laugh endears him to everyone he meets and it has been incredibly challenging for mum and dad watch him try to deal with something this hard and serious.

He is a wonderful brother and his sisters miss him terribly, we are all just praying he will be home and well for Christmas.

If you have any extra money to share this holiday season, please consider helping this beautiful family relieve the financial burden from such a life changing situation.

There are a lot of stretched households right now, I understand, but even $5 helps in a time of need.

Thank you so much for your consideration,

Liz