Hi guys...here's an article we wrote to apply to a potential funding source/opportunity (one that has, however, since fallen through). We thought it might be worthwhile sharing it here in case anyone wants to know the full story and how it's unfolded (so far).
Thanks
John's whanau
John Taylor’s Journey (so far – as of 19th Feb 2022)
John’s journey started towards the end of August 2021. The whole country had gone into ‘Level 4 Lockdown’ because of Covid mid August and we were sitting watching TV together as a family (with all our feet up on the huge ottoman we have in the centre of the room) when we noticed a small ‘spot’ on John’s right shin. We had a closer look at it and noticed that it had a dark centre that made it look like it had been knocked at some point. We didn’t think anything of it until a couple of weeks later, when we saw it again and noticed it had grown and that it was much darker now. It looked like a small mole/blood blister at this stage but we took a photo of it for reference (3rd September) as we figured we’d keep an eye on it in case it grew further or changed in any way.
A few weeks later it had grown again (to around 4mm in diameter and 3-4mm in height) so we took another photo (22nd September) and rang the doctor’s surgery to try to get an appointment. They asked us to send them the photo but told us that, seeing as we were currently in alert Level 4 (but it was likely that we would be moving to alert Level 3 within the next week or so) they were only seeing patients face-to-face for emergency appointments. They also said that, given that he was a teenager an ‘unusual mole’ would most likely be nothing so it could wait until we went into Level 3. We made an appointment for the following week where one of the doctors examined him and agreed that it looked ‘strange’ and concerning enough for her to recommend that we see one of the other GPs at the practice to get it checked, as he was more experienced when it came to recognising different types of moles and skin cancers. We couldn’t get an appointment with the other GP for another week or so and when we did see him he told again that, given he was a teenager that it was highly unlikely that the mole would be anything ‘suspicious’. He did, however say that he thought it would be a good idea to biopsy it, but we insisted that we wanted it removed completely as soon as possible.
The next available appointment when this could be done was not for another week or so, so it was eventually removed on the 18th of November. At the time the doctor who removed it said it was most likely to be a verruca vulgaris (a type of wart) and the nurse said it looked like a blood-filled tick hanging from his leg. The doctor who removed it made the decision to only remove small margins around the growth and said that the tissue would be sent off for testing. On the 5th December he rang to say that the test results had come back, and that they were “90% sure it was a benign spitzoid tumour” but that these types of tumours can sometimes share similarities with certain types of melanomas so it was being sent off for further (genetic) testing. He originally said that “if you don’t hear from us by Christmas, just assume it’s good news” to which we told him we wanted to be rung once the results were through regardless of the outcome (positive or negative) as we didn’t want to head into Christmas wondering if the report had just ‘got lost’ somewhere in the system. When we hadn’t heard back from him by the 23rd Dec, we rang the doctors surgery and left a message for him to ring us back. He rang back later that day and said that he hadn’t received any results yet – but that he’d follow it up between Christmas and New Year and would ring us as soon as he had any news.
He eventually rang on Friday the 14th of January to say that he’d rung to enquire about the results several times between Christmas and the 14th but, that the results had only come through that day due to delays caused by it having been a busy time at the labs over the Christmas period as well as due to the current Covid situation. During this phone call he told us that, unfortunately, John’s lesion was one of the 10% of spitzoid like tumours that turn out to be melanoma. He told us he’d already referred us to a specialist and recommended that we pay for an initial consultation with him privately as he was concerned the wait to see him on the ‘Public’ list would be long and that the results had indicated that the tumour had been very fast growing.
We rang the specialist's office and managed to get an appointment the following week on Thursday the 20th January. During the appointment he explained the histology report (which luckily we had already read the night before) and asked if we understood what the report said. He took us through the report step-by-step clarifying each part, and explained the implications of the results of each of the tests that had been performed. He told us that he recommended surgery to remove wider margins around the original site as soon as possible. When we asked when that would be possible, he informed us that he’d already booked the theatre for Monday. We agreed to the surgery and he started filling in forms but, when he asked us who our health insurer was and we replied “we don’t have one” his face fell. He then went on to say that, given the aggressive nature of this particular melanoma, he would recommend paying for the surgery ourselves if we were able to as the wait time through the public system would be 3-4 weeks minimum and possibly longer due to Omicron having recently arrived in the country. He also said that the combined cost of the surgery and a scan to track which sentinel node/s the site led to would be around $13-14,000. We said that we wanted to go ahead but, asked when he would need to know by in order for the surgery to go ahead. He said ideally by 4-4.30pm that afternoon, but by 10.30am the next day at the latest as he’d need to confirm the bookings for the theatre and anaesthetist. He then talked to us about the possibility (depending on the results of the tests on the lymph nodes) of John needing further treatments that could include a ‘wait and see’ approach (using regular scans and tests to check that the cancer hasn’t recurred anywhere) OR radiation, chemotherapy or immunotherapy. He also warned us that, if immunotherapy was recommended, that it may not be funded due to John’s age (he was 16 and a half at the time). We were already aware of the possible costs of immunotherapy (up to $150,000 for a year’s treatment) as we’ve seen reports in the media and have seen Give-A-Little pages set up for people who have needed it – but have not been funded for it so have ended up paying for it themselves (including people who have had to stop treatment part-way through because they’ve run out of funds).
We left the appointment and immediately rang my brother who offered to loan us the money for the testing and surgery. John had the surgery on Monday the 24th January where they performed a keystone-flap procedure and removed 2 lymph nodes from groin area. After the surgery the specialist told us that we could expect the results from the lymph node testing back sometime over the next week or so (and warned us that it might be longer than usual due to it being a public holiday on the Monday - Auckland Anniversary weekend).
The specialist eventually rang us on Friday 5th February to say that, in addition to the results from the original site having shown that there had still been melanoma cells present, that each of the lymph nodes had also shown clusters of cancerous cells that were over the 0.1mm threshold that made them ‘of concern’ as well as multiple smaller clusters of cells throughout each lymph node that were too small to be ‘officially of concern’ but, that showed the cancer had spread throughout the entirety of each of the lymph nodes. At that stage he recommended a PET scan – but again recommended that we pay for it privately (at a cost of around $3000) if we could as he was concerned that delays within the public system might mean a longer wait. We rang my brother again and asked if we could ‘top up’ the loan by another $3000 which he agreed to, but said that he wasn’t able to top it up any further as he’d come to the limit of his ability to borrow against his mortgage.
We managed to book a PET scan for the following Tuesday. Unfortunately, as we were driving down into the city early Tuesday morning, we received a phone call to say that the PET scan would have to be rescheduled as the machine in Wellington that makes the radioactive tracer used for the scan had broken down the night before which meant no-one in NZ would be getting a PET scan that day. They also told us that it would most likely be at least a couple of weeks before we would get another appointment for a scan but then rang us back a couple of hours later to say that they had an appointment the next morning if we could make it. We took the appointment and John had his PET scan on Wednesday 9th February.
We saw the specialist (at a scheduled post op follow up appointment) the next day, and he told us that the PET scan results were already back and that they were negative. He explained that this meant there were no tumours over 4mm in size (the resolution limit of the PET scan) anywhere else in John’s body. He told us that he would be meeting with the team from the NZ Melanoma group to discuss John’s case the next morning and would ring us back with their decision. At this appointment he talked again about the possible treatment options that might be offered to us and said that if John was ‘a 30 year old male’ that any immunotherapy offered would NOT be funded (but that due to his age, they could potentially apply to other funding agencies that were notoriously tight fisted with regard to paying for the use of immunotherapy as a preventative treatment). He told us that a year’s worth of Keytruda treatment costs around $120, 000, but that although you can pay for the treatments one month at a time, that you really needed to commit to a minimum of 6 months of treatment (ideally a year’s worth) in order to reduce the risk of recurrence enough to justify the treatment (especially given immunotherapy treatment involves receiving 3-weekly infusions which have a number of serious unpleasant side effects).
The specialist rang back the next afternoon to say that he had some good news - that the group had decided that, because John was under the age of 16.5 when he was initially diagnosed, they had been able to refer him to Starship and we could expect a phone call from a paediatric oncologist to arrange an appointment to discuss John’s treatment within the next week or two.
On Monday 14th February John spent the night at North Shore hospital with a suspected DVT (blood clot) in his leg which thankfully turned out to be a collection of lymph fluid in his thigh which was pressing on a vein or artery causing his leg to swell to twice it’s normal size and turn a very dark purple colour.
The oncologist rang on Friday (18th February) to introduce us to himself and the Nurse Specialist who will be co-ordinating things going forward. He said that the Multi-Disciplinary Team had met that morning and had discussed John’s case and that, given the rarity and aggression of John’s type of melanoma (apparently they only see a few cases a year in adults in NZ let alone in children/teenagers and it tested positive for 2 genetic markers that indicate a form of melanoma that grows very quickly and often has poor long-term outcomes), that the team had decided to seek advice from their colleagues at St Jude’s Children’s Research Hospital in the United States. He said that it would most likely take 2-3 weeks for them to get back to them with their recommendations and that that time frame could be extended if they wanted the original tissue sample to be sent to them so they could examine it themselves. He explained that, they MIGHT still recommend a ‘wait and see’ approach which would entail regular (2-3 monthly) ultrasounds of the lymph nodes in John’s leg as well as PET scans (most likely yearly due to the large amount of radiation used) to check that the cancer hadn’t recurred elsewhere in his body. He also said that the other option was to treat John with a form of immunotherapy (Keytruda being one of these) that may or may not be fully funded due to his age.
The oncologist has said that he will be in contact with us as soon as Starship has received the recommendations from St Jude’s, and that we will have a meeting then to discuss a treatment plan for John. In the meantime, a friend has set up a Give-A-Little page to help us pay for John’s surgery and testing so far, and to raise money towards the cost of his future treatment and care. The decision to do this was a difficult one as we have 3 other children (all teenagers) and we knew it would put the entire family ‘in the spotlight’ very quickly. However, we decided that we can’t risk not being able to pay for John’s treatment immediately if immunotherapy is recommended so agreed for the page to be set up. Since it ‘went live’ the local community and our family and friends have donated just over $30,000 towards his treatment, but that amount was raised in the first week or so and contributions have slowed considerably since then – leaving us concerned that we won’t be able to afford the treatment after all if it is recommended.
