Fabulous Miss Phoebe

Phoebe has been fighting neuroblastoma since she was 9 months old. Now 4, she continues to fight & is still smiling despite everything she's been through.

Phoebe has been fighting neuroblastoma, a rare childhood cancer, since she was 9 months old. Now 2, she continues to fight with a smile despite all she has been through.
In October 2015, Phoebe developed some small lumps on her torso which appeared whilst she had a cough and cold. The GP wasn't sure what they were and after 2 weeks referred us to be reviewed by a consultant. Phoebe started vomit on a fairly regular basis but not regularly enough for us to take her to the doctors again - after all babies are sick, aren't they?
On November 12th after finding out we would have to wait until January to see a consultant we went to children's A& E - we were told that they were most likely to be developmental cysts and nothing to worry about and I went away feeling confident in what I'd been told with a list of things to look out for over the coming weeks whilst waiting for our referral appointment. The paediatric registrar that we saw did, however make a request for an ultrasound appointment as he said that the consultant would want one. The appointment arrived for 4th January and we watched for any of the signs we were told to look out for but none of them appeared.
Towards the end of December, Phoebe's vomiting started to get more frequent and her sleep more and more disturbed and by the New Year's weekend we were getting worried but knew that we only had to hold on for a couple more days to get that ultrasound and were seeing the consultant 3 days later.
On 4th January we took her for her ultrasound scan, still expecting to be told that the lumps were cysts (even though they had grown and she now had 7, but none had grown more than we had been advised to look out for). She had always been constipated from birth and we knew this was also causing problems and expected that her swollen tummy was to do with this.
The ultrasound was horrific, we had to hold her down on the bed screaming and crying. The consultant who did the scan looked at us and said "I've found something, I'm pretty sure I know what it is, the good news is that at her age the prognosis is good. She needs a chest x-ray before we can say anymore but I'm going to admit you". What was happening? Now, over the weekend I'd been googling constipation in little ones and hardness in the tummy as I thought I could feel something but put it down to the constipation - I'd ended up on a neuroblastoma site briefly and shut it down telling myself I was being stupid, but what I did read was that in a child under 12 months the prognosis was good - exactly what the consultant said - I knew there and then that was what it was. Hubby, however, was completely in the dark and as we sat in the waiting room I told him I thought I knew what it was and it wasn't good. Jumping the queue for x-ray we were in and out in minutes, 20 minutes later, our (now legendary) oncologist, Dr Visser appeared, a temporary consulting room was set up in the scanning room with stools and chairs brought in and many apologies from the staff - all we wanted to know was what was happening. Dr Visser didn't mess about "I'm from the children's cancer team. . . . ". . there it was - the 'C' word. Ushered up to Ward 27 we were admitted for monitoring and to create a plan. The next day was my birthday, I woke up in hospital to this different world which was to become the norm very quickly. We were allowed to go home that night and scared and dazed we stumbled through the next day or two before heading up to QMC for scans and biopsy. We were told from the outset that it was a tumour and it would depend on the further scans whether Phoebe would need chemo or other treatment but we were being prepared for a central line to be fitted and chemo to commence.
After the second day at QMC whilst she was under general anaesthetic for an MRI scan Phoebe aspirated and ended up with a chest infection and so began our stay in Nottingham. 3 days later on Monday, 11th January our doctor at QMC, Professor Hewitt, a lovely gentle giant, broke the news to us that the tumour in her abdomen was so large it almost filled Phoebe's entire body, pushing her lungs up and kidneys down, they were amazed that her body was still coping so well. It had also spread to her liver and the lumps in her skin were also neuroblastoma. There was still a chance that it could be stage 4s which, if found in children under 12 months, can regress by itself - only the biopsy results could tell us this but the tumour was so dangerously close to her organs that she needed chemo to shrink it and shrink it fast. The central line was fitted the next day and chemo started the day after. It was a whirlwind and we are extremely grateful to all of the staff and parents at QMC who looked after us and held our hands through those first days.
The biopsy results came back with positive news, confirming that the tumour was non aggressive and she was classed as stage 4s. We were relieved -this nightmare wasn't going to last forever, we felt lucky, guilty even and got our heads down to get through.
After a couple of weeks we got transferred back to Leicester Royal Infirmary and were thankfully closer to our older daughter, Amelie, who I had missed terribly, I couldn't handle what was happening to her, she'd only been at school for 3 months and we'd always done everything together. She loves her little sister to bits and didn't understand what was happening. Saying that, she was very brave and loved the playroom!
Phoebe had had one cycle of chemo and was coping fairly well although was struggling to keep any food down. Finally we got home and Phoebe's fight continued.
Our amazing little girl endured 6 cycles of chemo, numerous scans and we saw a great response. At the end of June we were relieved and happy to be told that they believed that the remaining tumour would regress by itself, there was only 1 skin lesion left and her liver was clear. Throughout, Phoebe had remained our cheeky, smiley girl, defiant and strong, winning the hearts of all those around her.
We relaxed a little, took a trip to Cornwall and enjoyed almost normality.
Next scans were due at the end of August, and Drs were so confident that they arranged for her line to be removed.
The scan day arrived and during the previous week I tried to convince myself that the one skin lump that was left had not grown.
At 9am the day after Phoebe's scan the phone rang - it was Dr Visser - I can't remember the conversation properly but it was clear that the tumour had grown and spread further, everything came crashing down again. Phoebe now had to be treated as High Risk Neuroblastoma which meant starting a new treatment protocol starting with intensive chemotherapy and would include stem cell transplant, surgery, radiotherapy and immunotherapy. We felt like we were back to square one only worse, we knew what was to come and knew it would be worse than last time.
Chemo began, every 10 days regardless, we were in and out of hospital and had daily nurse visits in between, this was due to go on for 8 cycles but after 6 Phoebe was admitted to hospital with kidney problems and there we stayed for a month, her problems developed into renal failure and sepsis and she spent a week in intensive care in an induced coma to allow her body to gradually start to repair. For the first time I couldn't stay with Phoebe overnight and it was a massive wrench to come away but back on Ward 27, the staff looked after me immensely well, allowing me to be near enough to her if I needed to go. The intensive care staff were also amazing and showed me how to help with her care, we felt so helpless during that time, any little thing we could do just helped us through. We played music and read to her and after a few days her big sister came to visit. Brave big girl Amelie has had so much to cope with, she's a super loving big sister and has had to grow up fast in some ways.
Once Phoebe was well enough arrangements were made for her to go to Sheffield to harvest her stem cells. After having another line put in her neck ready for the procedure, we spent one night at home and then off we went and yet again, our fabulous little girl astounded us all by taking it all in her stride. Stem cells successfully harvested, complete with Santa hat and a visit from the Salvation Army band playing Christmas Carols we finally got home 3 days before Christmas.
Phoebe's second Christmas was a quiet one, we were incredibly grateful to have made it and enjoyed every minute as chemo was to start again 2 days later.
Phoebe couldn't continue with the chemo regime she had been on as it had affected her kidneys so she had 2 cycles of a different combination. Scans were set up for Valentines Day and we travelled back from our wonderful break at Harleys House in Rutland for them. We had a fantastic time and Phoebe was very well and putting on weight. However, our bubble was burst yet again when we found out the following week that the tumours had grown again.
This meant that we were now going to go off protocol, we had to try something else. The Beacon trial was suggested and looked like the best option and this is where we are. At Birmingham Children's Hospital under the care of the most excellent Pam Kearns. (Our lovely Dr Visser moved on to pastures new whilst we have been on this trial, we miss him immensely and are very grateful for the care he has shown to us all throughout. We hope we will see him again at some point on our journey).
Phoebe has had 6 cycles to date and has tolerated the chemo really well, putting on weight, growing and even has hair. The cancer initially responded well and we are waiting to see what the next steps are.