Lowen’s Story
Lowen was diagnosed with high risk, stage 4 neuroblastoma at just four years old in 2022. After 18-months of treatment Lowen is in remission and despite some side effects is a happy and healthy eight-year-old. Fliss, Lowen’s mum shares his story…
Diagnosis
Lowen was diagnosed with stage 4 high-risk neuroblastoma in February 2022, at just four years old. Before his diagnosis, he had been so excited to start school - he’d run in every morning. But before long, we began to notice changes. He became more clingy, less eager to go, and soon the school started calling, asking me to pick him up because he was upset and complaining that his tummy hurt.
We had multiple visits back and forth to A&E and GP consultations and the same thing was diagnosed - constipation. An X-ray showed he was heavily constipated and for that reason the Dr dismissed blood tests and he was prescribed laxatives, which at the time seemed to provide some relief, so we continued. Eventually he was referred to a constipation clinic, however by this time he was complaining of pains in his legs along with tummy aches and loss of appetite. Most of his symptoms could be put down to constipation but the leg pains proved a mystery to the consultant who suggested it was just growing pains.
By February half term the leg pains had increased, the tummy aches were keeping him awake at night and nothing was helping. Again we went to A&E, and bloods were done immediately.
We just knew at this point that it was something bad.
The next few days were busy, blood tests, transfusions, scans, a Hickman line fitted, and meeting oncology consultants. We were told there was a tumour on the kidney and that Lowen would need treatment but not at our local hospital in Margate, he would need to go to The Royal Marsden in Surrey.
It was at The Royal Marsden Hospital that we were given the official diagnosis of neuroblastoma, the statistics of a 50% survival rate and what seemed like an endless list of the side effects of the planned treatment. He had a left suprarenal mass with metastases to abdominal lymph nodes, bone marrow and bones .
We sat in shock, powerless and scared of what was yet to come.
Treatment
Lowen started the Induction chemo in March and it was pretty brutal, nothing can prepare you for seeing your child become so ill, so quickly. Pete and I swapped regularly and after the first few rounds of chemo he was allowed home. The first time home from hospital was so scary leaving the safe space of the hospital ward, getting used to his NG tube, feeds and medication, dressing changes and blood tests with the community team but the time was so precious and so well needed. To Lowen the best medicine was being at home and playing with his older sister Tamar and for us all to be together under one roof.
Scans midway through the initial treatment at day 40 showed a complete metastatic response which was confirmed on day 80. I know we were told at the time but I don’t think it sank in. He then underwent surgery in June to have his primary tumour removed at St George’s hospital, a six-hour nail biting wait and we were told they had managed to remove 97% of the tumour, which was later reconfirmed to be 100%.
We chose for Lowen to take part in randomised trials and the bloods done for research. So he went on to have 2 courses of high dose chemo and tandem stem cell transplant. By October we were home and had a break before radiotherapy in November. He rang the end of the radiotherapy bell and we braced ourselves for Christmas and the start of immunotherapy. Immunotherapy had its ups and downs, Lowen became very ill with Covid whilst in hospital in January. He narrowly missed a transfer to the Intensive Therapy Unit but eventually he was able to come home and treatment could continue there.
Lowen finished treatment in July 2023. His scans still remained clear and the consultant said to us ‘Go and live‘. We removed his NG tube the next day and we were soon given a date for the Hickman line removal. It all seemed unbelievable.
Life after
Lowen is now two-and-half-years post treatment and is in remission. We still have visits to the Marsden Hospital for abdomen ultrasounds every four months. Lowen also has regular hearing tests as he has high frequency hearing loss caused by the chemo and he wears glasses due to side effects of the immunotherapy.
We are so grateful for the care he’s received, we never thought we’d be at this point over two years post treatment. Lowen is just your typical 8 year old and enjoys guitar lessons, swimming and gaming and playing with friends. We try to stay in the present and enjoy the time we have together but the worry is always there and always will be. We are forever grateful for the care and treatment he received and all the care he continues to receive.
