Seven years ago, my sister had a little girl, Poppy.
Poppy was born with a liver problem called « Biliary Atresia » for which the only « cure » is to undergo a liver transplant. When Poppy was 14months old and severely not thriving at 7kilos, but with a stomach stretched to 58cms with fluid, she finally received something very special from a family that were going through a very sad time in their lives.
Due to the marvels of modern medicine, Poppy received a part of an adult liver that was cut down to her size and one other person received the other part, the liver being the one organ that regenerates itself and 6-8 weeks after surgery has grown to a normal size.
Poppy did remarkably well. She was out of the ICU sooner than expected, and continued to get healthier and healthier and was soon able to go home.
A year after the transplant things took a slide and her little body started to reject the liver. Poppy spent nearly another year living back at the hospital, or very near to it. Then, out of the blue, she started to pick up. Again, she returned with her mum and her older twin siblings to life many hours away from the hospital, going to school, the beach on the weekend, as normal a life as a she could have.
All the time though, Poppy has been slowly deteriorating. Last week she was on a routine trip to Sydney for blood and liver function tests, when she developed a fever and nose bleed. Minor ailments that mean something more serious for a child in her situation and so she was taken by ambulance to hospital at midnight with surgery performed the following day.
When she received her liver transplant, as is normal procedure, her gall bladder was removed. An artificial stent that helps the flow through her liver is now blocked with gallstones and a 45min operation last week should have opened up the blockage. Three hours later, the surgeons had no luck, the stent remains 99percent blocked. On Thursday a team of surgeons will again attempt to unblock the blockage. At the moment she has a drain inserted to her liver that connects to an external bag and drains the fluid that is unable to pass through her liver.
Depending on the outcome of the surgery later this week, Poppy will either be able to go home and will hopefully manage to enjoy a couple more years at home or she will be placed on the list to undergo a second transplant immediately. Either way, if the surgery does buy her the time, it is known she needs another transplant, Thursday’s surgery will determine the urgency.
So, it brings with it a lot of sadness, and a very difficult time. My sister is scared and just can’t speak to Poppy’s doctors as she doesn’t want to hear bad news from them. Hannah and Liam are 8hours away from their mum and sister, staying with my mother and maintaining their normal school life. Poppy is fighting on. Someone made her a girlie bag and she walks around with her drain bag safely tucked, taking it all in her stride.
Six years ago, she was so small, too young and naive to harbour the fear and anxiety that now precipitates her trips to surgery. She is a very scared little girl, unaware of how serious things are, and if she is, she doesn’t show it. It is a time that is sad and troubling but we want to bring it so much happiness for her.
Please click on the icon for “Pictures for Poppy” to see how smiles are being brought to her face
Aunty Rena
xo
6 Responses to “About”
Leave a Reply
You must be logged in to post a comment.
I have read this story. I was very touched and just wanted to give words of encouragement. I wish you courage in this battle.
For the long hours I include a story website. I hope this will provide a little comfort!
http://www.storynory.com/
My son also has an illness.
Best regards,
Mary Rose
An update on Poppy.
The second round of surgery was unsuccessful. Heartbroken, Poppy and her mum have taken a few days away from the hospital and are spending some time with Hannah and Liam.
In a few days, the surgeons will try again to see if they are able to create any flow at all through the stent and slow down the deterioration.
A few words from the pixie’s mum….
Hello everyone, I am Poppy’s mother.
I wanted to thank you all for your kind messages and warm energy. Thank you very, very much.
Poppy is doing well she has incredible level of energy that amazes me because of the state of her liver.
She couldn’t wait to go to school on Monday to see her friends, insisting she would be fine to catch the bus home Monday afternoon (a short seven minute drive). She went back again the next day, then choosing to stay home for a couple of days because both days she had accidentally been bumped in the tummy. But, she couldn’t stay away and went again today (Friday) wanting to see her friends before our return to Sydney to the hospital on Monday. She spent morning tea and lunch with her beautiful kindergarten teacher in the staff room and library to avoid the bumps.
She is positive and accepting of the surgery to come, wanting the block to be fixed and put off for a little longer, a transplant that she doesn’t want to have.
She was scared of the pain after the first attempt and scared of going to sleep. We met with her anaesthetist prior to the second surgery a couple of weeks ago and he played with her assuring her he would look after her and check on her cheeky glands whilst she was sleeping.
The transplant surgeon wants to try again to open the block, being that there is nothing they can do but transplant if the strictures aren’t fixed. They explain it like a stream trickling through a rocky creek that 1% of bile is getting through, so possibly they can fix the problem for just a little longer.
Thank you all for your pictures and your prayers. Poppy is excited about the possibility of many pictures from little friends all over the world waiting for her at the hospital.
W.A
Hi Wendy and a BIG hello to you Poppy! Hannah has been keeping us up to date on how things are going with you and we are all so happy to hear that it sounds good.We cant wait for you to get home,so you will have to have a speedy recovery. love from Jemima,Tom,Kalyx,Indie. I wiil take the kids to camp and pick them up,as David is going to go in and help with the breakfast.Not me, as I dont cook! Thinking of you both, Cassy
Hi, my name is Mary and I am the cousin of “aunty Rena” and W.A, living in Australia.
Just last week I was working with my mum (”Rena” and “W.A’s aunty) on putting together a family tree. This activity brought back memories of times spent with our cousins as children and can only hope that following all this antagonism in her young life, little Poppy will continue to grow and thrive into adult life and beyond so that she too can reminisce over the ‘good times’ we all seem to take for granted.
She is indeed a little trooper.
Stay strong little flower and blossom.
An update on what has been happening….
Thankfully, just before Christmas, and with a huge amount of determination, the surgeons were able to clear the block in the stent that passes through Poppy’s liver. This gave her much wanted, precious time.
She has been able to spend the time since at home where she passed a fabulous Australian summer playing at the beach, surrounded by the twins and her friends. When the summer vacation was finished she went back to school.
Last week (end April 2007) she returned to Sydney for a check-up and it became official that time has come to move to the next phase. Her little liver is starting to fail, or at least no longer perform the funtions necessary and she has been given the date when she will be “worked up”. There is no turning back and the time has come when a transplant is necessary.
There is one enormous mountain ahead to climb.