Muireann was just four weeks old when she was diagnosed with neuroblastoma after an ultrasound to test for kidney reflux. Muireann’s parents, Jenna and Thomas, share their journey so far…
When we took Muireann home from the hospital we couldn't wait to enjoy our newborn bubble and adjust to life with a new baby. That quickly changed in a matter of four weeks.
Muireann was initially being treated for reflux. We had gone to the GP because she was unsettled and showing signs of discomfort. We had a feeling something wasn't right as she would get really distressed and appeared to be in pain. We treated her with Gaviscon and a urine test was done to rule out an infection. The sample came back contaminated but didn't require further action as she seemed to have settled.
Her older brother Conan has grade 4 VUR (kidney reflux) so I had requested for her to be checked as it is genetic. She was given an ultrasound and this is when they discovered she had neuroblastoma. Muireann was only four weeks old.
We had never in a million years expected to be told that our baby has Neuroblastoma that same evening. It still hasn't fully hit us as she appears to be doing everything she should be and is reaching all of her milestones.
We would be none the wiser otherwise. We really feel and believe someone was watching over her for it to have been found - she was meant to have gone for that ultrasound.
Initially Muireann was Stage 1, with a tumour on her left adrenal gland. However, the week after her diagnosis she had a second MRI scan, we were told it was stage 4 MS Neuroblastoma and had spread to her liver and abnormalities on the right adrenal gland.
Since diagnosis Muireann has had MRI's, ultrasound scans, biopsy/bone marrow, blood tests and MIBG scan. All part of the ‘watch and wait’ method. Some neuroblastomas in babies and very young children are known to shrink over time or disappear completely without treatment. If this happens we can avoid the side effects and long‑term impacts of chemotherapy or surgery. However the uncertainty is incredibly difficult.
The hardest part is waiting to see if she becomes more unwell to start intervention. We are constantly living on edge and worrying over anything. At times we have said we would nearly prefer chemo as we would feel something was being done. But we know this is the best course of action for right now.
We have 100% faith and trust in her Consultant and oncology team.
Since the initial MRI the lesions on the liver have increased in size and the liver has become enlarged. We are still waiting and watching with frequent USS as she is asymptomatic. We have briefly discussed that she may need possibly 1- 3 rounds of light chemo if needed.
We are still in shock. We feel like frauds as Muireann is thriving and doing everything she should be doing and more. We are thankful that Muireann will never remember this all. But we as her parents will never forget it.
We took on the 100 Miles in September Challenge this year for Neuroblastoma UK and with the support of our friends and family raised over £6500. We decided to take up the challenge to keep us and our minds busy during this time of waiting. We also feel the cause itself and what it supports is worth every step and penny raised. Hoping for kinder treatments for any child having to endure adult treatments. The side effects and damage it can cause is life changing too.
A big thank you to Jenna and Thomas for sharing Muireann’s story 💛
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