My daughter was around 18 months old when we first started noticing that she was drinking more. She was our first child, and we initially put it down to her learning the word 'drink’. However, we became worried enough to take her to our GP. They did a glucose blood test and everything came back normal, so life continued.
Despite this, her symptoms continued, and three months later, our GP referred us to the local (large) hospital paediatric unit. We waited there all day, and were asked to catch a urine sample from a non-potty-trained toddler before being told it was behavioural. We were sent on our way. By this point, Philippa was drinking over two litres of water a day and showed no interest in food. I tried to stop the bed-wetting by putting Tena Lady Pads on her nappies each night, but to no avail.
We managed to convince our GP to refer us to a general paediatrician, who took some blood tests but then failed to follow up for over two months - despite my constant calls and messages about her losing weight and not doing well. I was beside myself with worry, but as it was my first child, I put my faith in the doctors we’d seen.
Ten months after her first symptoms appeared, with my daughter being a shadow of her former self, we paid to see a private paediatrician. He mentioned something called diabetes insipidus. Two lots of blood tests and just 10 days later, she was admitted to the hospital and diagnosed with diabetes insipidus, as well as panhypopituitarism (a condition in which the production and secretion of all hormones by the pituitary gland is reduced), caused by a Langerhans cell histiocytosis (LCH) lesion on her pituitary gland. Two other lesions were also found in her skull and one in her spine.
It turned out that her excessive drinking was her body self-medicating to rehydrate itself, as it no longer produced vasopressin, the hormone which controls urine production. She was living in a constant state of extreme thirst, trying to rehydrate herself with any water she could find, whether from what we gave her, puddles, bath water, watering cans or her friends' drinks.
Shortly afterwards, she began chemotherapy treatment, which continued for 12 months. She then had 18 months of clear scans before one lesion returned, which meant beginning another 24 months of chemotherapy.
I was 31 weeks pregnant when she was first diagnosed and had my son three weeks early. It felt like my daughter's whole life revolved around the hospital and treatment. She’s doing well, although there are concerns about some abnormalities showing in her brain MRIs that could cause issues later in life.
Since then, she’s suffered allergic reactions to the second-line therapy, so we had a tricky few months of regular inpatient treatment - disrupting both her schooling and our work, and our family life. However, once on maintenance treatment, she did really well.
She finished treatment in October 2023, and she’s currently deemed to have ‘no active disease’. She continues to have MRI scans every six months to monitor things and she continues to be monitored by the endocrine team for her panhypopituitarism.
She is now back on daily growth hormone injections. Unfortunately, she did have a full adrenal crisis (a condition in which your adrenal glands don't make enough of the hormone cortisol), during which she nearly lost consciousness, without a known cause, so we are trying to keep a closer eye on things.
I will forever be haunted by how long it took to get her diagnosed. One big issue with rare illnesses is that medical practitioners don't recognise the signs and symptoms early enough. I can’t fault the care we have received since diagnosis, but the more that can be done to raise awareness, the better. An earlier diagnosis for our daughter may have prevented many of the lifelong medical conditions she now has due to the damage caused to her pituitary gland.
The picture above shows her celebrating World Book Day from the hospital, showing just how well she deals with everything life throws at her!
Coping with Philippa’s treatment
I found juggling her reactions to chemotherapy and my work as a litigation solicitor overwhelmingly stressful and ended up resigning from my job as a result. It took a few months for me to feel 'normal' again, and I’m now working as a swimming teacher and lifeguard, which is allowing a far better work life balance. However, I still found the end of treatment hard. It felt like I’d been on a hamster wheel for the last five or six years, dealing with her undiagnosed symptoms, first round of treatment, COVID-19 and then her relapse, and then it all stopped, and it was a very strange feeling. With the support of a local children's cancer charity, I’m feeling far better.
Finishing Treatment: A Parent's Guide
For many parents, reaching the end of treatment can bring mixed emotions. This is the moment you have waited for since hearing the diagnosis. You may feel happy and relieved your child or teen has completed their treatment, but you may also feel anxious that the cancer may come back. It can be a very unsettling time.
Our guide, ‘Finishing Treatment’, contains information on what happens when your child finishes treatment and explains follow-up care.