I want to start this story off by saying how unbelievably proud of my daughter I am, and, through this experience, despite it being one of the worst things a child can go through, let alone a parent, she has made me appreciate the little things in life even more.
Melody started snoring the Christmas before she was 8. She had been asthmatic since she was 4 and i assumed at first it was all part and parcel. All of a sudden in February 2024 the tone of it changed. She started "whooping" on the inhale, "humming" on the exhale. The GP said it was norrnal and they would reassess during her asthma review in April, I'd managed to record the snoring by that time to show the asthma nurse. They made the decision to change her inhaler from a brown one to a purple one. By the end of May, the snoring had stopped and her asthma seemed to be decently managed by this new inhaler. Melody had no problems competing in her school sport's day at the end of June, but then a couple of days later she started with a sore throat and it looked like her glands were a little swollen on one side. I got her some strepsils and calpol and thought nothing more. A week later, it still hadn't gone, so off we toddled to the doctors on Friday 5 July. He said it was hay-fever and I knew that wasn't right. She had no other symptoms. After work on Saturday I took her to about 3 different pharmacies. They suggested it could be the steroid residue from her inhaler. Sunday, she couldn't swallow food. Out of hours GP gave her some throat numbing spray. Then Monday she couldn't swallow water, and the glands on the right seemed a lot more pronounced, so up to A&E we went
A camera put up her nose and down her throat discovered that, what I thought was her glands, was actually a mass, possibly a cyst, in her throat so they admitted her and booked a CT scan, remember that she kept asking me for a cold glass of milk and it was breaking my heart that I couldn't give it to her. At 10:30 that night, the nurses brought me to the desk and showed me the images. The mass on the right hand side of her neck had squished her airway all the way to the back of her neck and her oesophagus was nowhere to be seen. They put her asleep and intubated her. The next morning (Tuesday 9 July) we get told she will be transferred to Birmingham Children's Hospital.
We were bundled into the ambulance, Melody's dad and stepmum followed in the car, my partner joined us later in the day as he was tied up at work. She was taken straight into PICU where I was greeted by her name on a board and the word "oncology" underneath, I was devastated. Dr. Hobin, the oncologist soon made an appearance, as did the ENT team. The following day they took Melody for an MRI to get better imaging. They ran into issues when they tried to lie her flat as the breathing tube was getting compressed, cutting off her oxygen. They took her to theatre instead where they re-intubated her with a reinforced breathing tube and they also took a tissue sample for a biopsy. Days went by waiting and waiting for the results to come back. I stupidly googled a lot of the words i overheard during rounds and handovers, much to my detriment and scared myself silly. Finally nearly 2 weeks later we had results. Synovial sarcoma. A soft tissue cancer, usually found round the joints and very rarely in the head or neck. Now the treatment could begin.
Melody's central line was put in and she had her first batch of chemo over the next 3 days, however, she was still asleep. The ENT specialists came every morning to check on her (and me). 2 day into chemo, they said "we need to think about waking her up". All of a sudden, panic struck. How was I supposed to explain all of this to my 8 year old?!
Then they dropped that because Melody's airway was so compromised, a tracheostomy had to be done below her voicebox and a PEG had to be inserted into her tummy so she could eat and get her meds. More drastic changes that I didn't know how to explain once she was awake, but it needed to be done. They woke her up slowly and she got stronger by the day with the physio team's help. She hated it though.
At the beginning of August, she moved over to the cancer ward where she had another 2 batches of chemo, 3 weeks apart, and we, as a family were training to deal with the tracheostormy care. Regular MRI checks however, found that the treatment was having no effect on the tumour, and in fact, it had grown. At the beginning of September, we were pulled into a meeting with the ENT team and introduced to Neil Sharma and Camilla Dawson, a surgeon and a speech therapist from the QE who had both worked a lot with laryngectomee patients. There is very little info about cases of this sort in children, simply because it rarely occurs in kids. They explained that this was going to be the best option going forward as anything else would mean palliative care. Melody's dad and myself wasted no time in signing the consent forms. She went to surgery September 30 deg and was in theatre for II hours. It was such a long day but to hear Mr Sharma and Ms Stephenson (the paeds ENT surgeon) say at the end of it all that they were certain that they had got the whole tumour was the best news we could have hoped for.
After 4 weeks of recovery back on PICU (more of the dreaded physio) she moved to Ward 5, a surgical ward. Dr. Hobin came to see us regularly and once the tests were back from the margins, he explained that it was a complete resection and no more treatment was needed. Amazing news! We also learned that caring for her lary was a lot less stressful than the trachy.
As we rolled into November, I got fully signed off with her care by the nurses and I was allowed to take her off the hospital grounds. She also was allowed to spend the nights in the Ronald McDonald house with me.
Finally she was discharged home on 26 ^ prime November, exactly 20 weeks after being admitted. Christmas was a quiet affair and then in the new year, I accompanied her into school till the teachers were trained and comfortable. She's now thriving in her new normality being a sassy 9 year old and we couldn't be more grateful for the teams that have helped her get to this point. They are truly miracle workers.
