Elsie Woolford

Elsie was 3 years old when she was diagnosed with high risk ERMS right neck primary parameningeal site with pulmonary metastasis. Elsie had just finished with her childminders for the summer break and she was full of life, fun and always energetic. You would never believe that the following day her life would change forever.

Elsie started with a high temperature and was tired and seemed unwell, this didn’t seem unusual as often children of this age get high temperatures. I just thought it would be something that would pass. The next day Elsie’s temperature had settled down, but Elsie still didn’t seem herself, she wasn’t eating and was lethargic. We took Elsie to see the GP, where on examination a lump was found on the right side of her neck. The doctor asked if this was normal for Elsie at which point, I said “no” as I had no idea it was there. The doctor thought it was probably a swollen lymph node due to an infection and as Elsie’s right tonsil was enlarged, we went home with a week’s course of antibiotics and told to go back if there were no improvements.

Elsie continued to be distressed, wasn’t eating and was tired all the time, the lump was getting bigger, so we had another trip to the GP. The doctor said to carry on with the antibiotics and that she would put in a referral for Elsie to be seen by the paediatric doctors at the local hospital. Another few days passed, and we just felt Elsie wasn’t getting any better, so we took her to the local hospital A&E department. We were seen quickly, and the doctors said that Elsie needed to stay in hospital for further tests. Elsie was admitted to the children’s ward where we she was seen by several doctors, no one really seemed clear on what was wrong with Elsie. One doctor was saying mumps and another was saying that it could be an infection. Elsie started on some IV antibiotics and spent 3 nights in hospital, after this she was transferred to another hospital that had an ENT consultant who could hopefully get to the bottom of what was going on. Several scans were carried out including an ultrasound and a CT. Elsie was distressed throughout the scans and unfortunately the images weren’t clear. The ENT team were pretty sure that Elsie had an infection that needed to be drained so she was booked into theatre to have the infection drained. It was during the procedure they realised Elsie didn’t have an infection and this was when they took a biopsy and removed some lymph nodes for further testing. Elsie was discharged after 10 days while we waited for the results. A few days later we got a call to say that no results were back, but could we take Elsie straight away to see an oncology consultant over at LGI. We were told not to worry as no diagnosis had been made.

We went straight to LGI where we met the consultant, he seemed to think Elsie was showing signs of Lymphoma. Elsie went for further scans, where nodules were found in her lungs. Another biopsy took place. We were then discharged and left waiting for results over the bank holiday weekend. We returned to LGI the following Tuesday where we were told that Elsie had cancer, it wasn’t lymphoma liked they’d initially thought and needed further testing to establish what it was. Later that week we were told the devastating news that Elsie had ERMS which had sadly spread to her lungs.

We were told that due to the nature of the primary location, it was in operable. Elsie went straight to theatre, where she was fitted with a central line, an NG tube and a bone marrow aspiration was done.

Elsie went on to have 4 rounds of intense chemotherapy called IVADO then 5 IVA . In December 2022, Elsie was fitted with a gastrostomy tube in preparation for her radiotherapy. Elsie then went for planning at the Christie in Manchester where she was to have proton therapy but sadly this was cancelled as cancer was found on Elsie’s spine, so there were too many areas to treat. Elsie went on to have 28 sessions of radiotherapy at St James’ hospital in Leeds. Elsie became quite unwell during this time given the amount of radiation she was having and the last round of chemotherapy on top.

Elsie finished her frontline treatment at the end of March 2023 just after her 4th Birthday. Elsie went on to maintenance chemotherapy in April 2023 involving oral cyclophosphamide and vinorelbine which made Elsie’s blood counts drop, so she was off the treatment more than she was on it.

Elsie had her end of treatment scans in July 2023 where we were told that Elsie had disease progression to her lungs. Elsie began VIR protocol on the FAR-RMS trial. Elsie managed the first course ok but then became very unwell with the side effects causing severe diarrhoea and a long stay in hospital. during this time, we were unable to get Elsie to take the oral chemotherapy and as she was on the trial, we were unable to administer this through her feeding tube. We had to make the decision to come off the trial and move onto the standard relapse protocol of VIT which allowed us to administer the oral chemotherapy through the feeding tube. Elsie had a CT scan in September 2023 which showed a reduction in the lung nodules and continued the VIT protocol but in November 2023 her blood counts just wouldn’t recover and her chemotherapy kept getting put on hold, this happened over a couple of weeks. Then, by the end of November, Elsie seemed to be unwell, lethargic and had a dry, persistent cough.

We took Elsie to hospital as we were concerned about her, Elsie had an x-ray and they found Elsie’s left lung was full of fluid. She was blue lighted to LGI where she had another x ray, we were then told that Elsie’s treatment wasn’t working and that Elsie had pleural effusion and the cancer was causing fluid to build up on her lungs. We were told that no more treatment options were available. Elsie was fitted with a chest drain to improve her quality of life and we brought Elsie home on palliative care. We were told we would have a few months with Elsie, we had so much planned, lots of “yes” days and to make as much magic as we could. We wanted to take Elsie to see the princesses at Disney land but she we couldn’t fly or get insured to travel.

Elsie had some good days, but we were back and forth to LGI with the chest drain as it kept getting blocked. After several times unblocking it, we still continued to have problems, so another x ray was done, Elsie’s chest drain was no longer working as the whole left lung was now solid tumour. On the 21st December 2023, we were told that Elsie wouldn’t make it to Christmas day. We made the decision to bring Elsie home where we were supported by a Macmillian outreach nurse. Elsie loved home, it was her safe place.

Elsie continued to fight and show strength as she always did and she fell to sleep at home on 3rd January 2024 in Mummy’s arms, surrounded by all the people she loved and all that loved her.