Hollie was born on the 7 February 2009 and lives in the north east of England, she was a very healthy baby and the only thing different about her was that she was born with a neonatal tooth which was quickly extracted after birth due to being loose.
At 18 months Hollie developed a lump in the side of her neck which doctors believed was a thyroglossal cyst, this was removed and turned out to be a simple ‘non-descript’ cyst.
Life after that was very normal. Hollie was a very healthy and happy child; there were no indications of any problems with her at all.
Hollie’s real journey began on 7 June 2013 when she broke her arm while playing in the garden with her brother; her father found it odd but I just thought it was a funny fall. Unfortunately, her father was right; after X-rays were performed it was quickly suspected that Hollie had bone cancer. Our world fell apart that day; to be told your child has cancer is something no parent can comprehend. I have a medical background and I knew her chances were not good with sarcoma.
We were quickly transferred to the two city hospitals in Newcastle Upon Tyne. While we were waiting for an MRI scan under anaesthetic to be performed consultants took further X-rays of Hollie’s chest to look for spread of cancer into her lungs; it was then that a bilateral cyst was discovered in her other arm. We were told the chances of cancer were now very slim, and after MRI scans were performed and biopsies were taken from Hollie’s arm, were given a diagnosis of Langerhans cell histiocytosis (LCH), a rare disease but one that usually has a very positive to chemotherapy.
It would be months before we learned that diagnosis was a mistake.
Hollie got a central line in July 2013 and began an 18 month chemotherapy and steroid treatment plan for LCH. Seven months into treatment Hollie had a full body MRI scan to monitor her lesions and response to treatment. Lesions were discovered in her spleen and it was also revealed the chemotherapy was having no effect. We were also informed at this point that Hollie has over 150 lesions affecting every bone except her hands and feet. We travelled to London for Hollie to have a PET scan to look for activity in her lesions where doctors could further biopsy as they were beginning to doubt the diagnosis of LCH. The PET scan showed no activity and it was decided that 3.5 cm of bone consisting of a whole lesion would be removed from Hollie’s leg for further histology. After 6 weeks we were given the diagnosis of lymphangiomatosis.
Hollie’s consultant was very open in explaining there was very little known about the disease and how rare she now was; he explained there was no cure and as Hollie was not really affected by the lesions present in her bones and spleen we decided to take her off treatment and monitor the situation very closely, so her port-a-cath was removed.
To check the status of her lesions, a full body MRI was carried out. Unfortunately this MRI revealed that Hollie had more lesions and a significant proportion of her existing ones had grown. We were referred to Great Ormond Street Hospital in London as they have experience with complex lymphatic malformations such as lymphangiomatosis.
In November 2014 Hollies central line was fitted again and a potential 2 year chemotherapy plan began with a stronger treatment.
A recent MRI revealed the possibility that Hollie’s lesions are still progressing so her consultants are unsure if her current treatment is working. We are due to attend Great Ormond Street again very soon and will no doubt be in talks about her future treatment plan.
We are very lucky that apart from the regular hospital visits and treatment Hollie leads a very normal life. The uncertainty of her future is the hardest thing to deal with. Her disease is currently progressing very slowly, but it is progressing. We take each day as it comes and look to Hollie for strength. She is a very happy and courageous little soul who takes everything in her stride. She is a true fighter and for now we just pray for a cure someday.