We often hear children described as “little rays of sunshine.” It’s clichéd, but what does it really mean?
Sunshine chases away darkness, and warms everything it touches. It’s an undeniable source of strength, and when you add rain, you get a rainbow. Colourful, captivating, a little bit mysterious – symbolic of hope.
Herein lies the spirit of Poppy – or P, as she is affectionately known by her family. She is 19 months old and she has undiagnosed Primary Immunodeficiency, meaning her immune system doesn’t work properly but no one knows why.
Her parents Dani and Huw have lost count of how many tests, procedures, and general anaesthetics she’s had. She takes more medicine every day than many adults have had in their lives, and she’s rarely allowed to play with other kids due to the infection risk.
But she never stops smiling. Never complains. Poppy’s superpower is her charm, with a mesmerising ability to command the attention of everyone around her. She just radiates happiness, and sees the magic in everything.
Despite all she’s been through, she loves the hospital and all the people in it (and they all adore her, stealing her away at every chance!). Even when she broke her leg recently due to the bone weakening effects of her medications, she continued to laugh and play, trying to run around. Dani says:
“People always tell me how strong I am, but P’s the strong one. I should be getting her through this but really she’s gotten me through it. If she wasn’t so happy all the time it would have been ten times harder.”
When Poppy was born, she didn’t put on weight in her first few weeks of life, despite feeding well. At eight weeks old she started to lose weight and was admitted to hospital. After two weeks and countless tests, she was diagnosed with an intolerance to cows milk and discharged, although a last-minute ultrasound revealed that her spleen (which plays a role in the immune system) hadn’t fully developed and wasn’t functioning as it should.
At five months old, she had her third major hospital admission due to weight loss. After more invasive tests and a day in intensive care, she was diagnosed with pneumocystis pneumonia (PCP), a life-threatening infection not usually found in healthy people. It was placing dangerous pressure on her heart and she was unable to feed. She was put on oxygen support to keep her alive.
In the next six months the family would spend only four weeks at home. The PCP diagnosis rang alarm bells for doctors, alerting them that Poppy’s immune system was not functioning and it was more than just her spleen. Her little body had zero protection.
They were told that she needed a bone marrow transplant ASAP to give her a new immune system, but it could take months to find a match.
They were discharged home to wait, with Poppy on IV nutritional support and a huge amount of medication to keep her well. Dani had to administer it, and says it was the hardest time of her life. Incredibly, it was just four weeks before Poppy’s perfect match was found and they were back at the hospital for transplant.
“Knowing I had to walk back into that hospital and willingly hand over my baby to the unknown was harder than the transplant itself.”
While the doctors provided the family with factual information, it was very difficult to imagine what the transplant would be like for Poppy.
“I couldn’t see what the other side looked like. Would she be the same person?”
There are no specific support organisations that exist to help with such a rare condition as Poppy’s. Dani turned to social media to see if she could get a more personal insight into bone marrow transplant, but wasn’t able to find much. This prompted her to start the Instagram account @life_with_poppy_bmt so that other mums in her position would be able to see the real, emotional side of the treatment.
The days leading up to the transplant are counted down from -10, with the day of transplant dubbed Day Zero. For those 10 days Poppy went through a gruelling pre-transplant conditioning regime including a round of high-dose chemotherapy, before receiving her transplant on the 12th November 2015. Just 12mls of bone marrow cells were sent to work to save her life. She was eight months old.
The family were kept in an isolation room for months while Poppy’s immune system was suppressed and they waited for the new cells to take over. They spent Christmas in hospital, and family and friends could only visit P through a large window looking in.
Every day Dani posted a photograph to Instagram, showing the scary as well as the good days. She only planned to go until Day +100 – making this milestone without problems means there is a very high chance that the transplant has been successful – but the account was allowing them to connect with families around the world and bring peace of mind to others going through a similar thing. So when they reached Day +100, they just celebrated and kept going!
P is now at day +329 post transplant and is doing amazingly well. She’s a typical toddler – chatting, giggling and pulling the house apart, but Dani and Huw wouldn’t have it any other way.
She hasn’t grown much in height or weight, due to her condition and the effect of the transplant and medications on her body. She’s still in six month old-sized clothing despite being 19 months. And they still spend a lot of time in hospital, mostly due to a mystery rash that appeared during transplant and hasn’t gone away. It drives P crazy with itchiness, sometimes scratching until she bleeds.
There is a risk her body could start rejecting the donor cells at any time, so she will have to have her bone marrow regularly tested for the rest of her life. And Dani does worry about how P’s experience will affect her into adulthood. The fact that she can’t really socialize with other kids – no playgroup, no day care, no swimming – how will that impact her future? And all of the medical treatments she’s had and continues to have, so that she can survive right now – what will we be the long term effects of those? With her condition being so rare, there are just no clues to tell us what her life might be like in twenty years.
While Poppy remains a mystery to her doctors, her family are just so grateful that the bone marrow transplant is a cure, and that she was able to find a match. So many kids can’t, so if there’s one thing you take from P’s story, let it be toregister to become a bone marrow donor.
Unfortunately parents aren’t a perfect match with their children, and only one in four siblings will be. Poppy is an only child and so relied on the international bone marrow register.
“As a parent, you would give your child any piece of yourself to make them well. It’s difficult to comprehend that you can’t, and that you will need to rely on the selflessness of a stranger – who you can never thank- to save your baby’s life.”
You can learn more about donation here through the Red Cross here:
For steps on how to register go to The Australian Bone Marrow Donor Registry:
“We were blessed and forever grateful to have receive a matched donor, but for many it isn’t so easy. We will never meet our donor or know who they are but I think about them a lot. We can only hope that they know the impact they have made on our lives and that we are eternally grateful for them.”
Day Zero (transplant day) is also known as your re-birthday. Poppy and her family will celebrate this day every year – so now she gets two birthdays! Next month will be P’s first re-birthday.
Her family are so excited watch her grow and experience the world as she heals. Having spent last summer in an isolation room, they can’t wait to enjoy this one and have their first Christmas at home as a family!
And as for a diagnosis?
“We are at peace with the fact that we may never have one. Poppy is here, she’s happy and full of life. We don’t need anything else.”
You can purchase prints of Poppy’s artwork here.