Robyn is our now 8 year old daughter. She is a beautiful, wise, chatty, extremely funny, confidant, loving child. Born weighing 11lb 8oz on the 19th March 2002, there has always been something very, very special about Robyn. She has 11 cousins, many friends who she adores, and a fantastic social life . On the 18th May 2009 our lives were changed forever as Robyn was diagnosed with stage IV Neuroblastoma. This journal follows our family as we take Robyn from the UK to Philadelphia and The States for her to receive ch14:18 antibody therapy.
Robyn was diagnosed with Neuroblastoma IV at St Georges Hospital in Tooting London in May 09. She has complained of mild pain behind her right knee about 3 times over the course of the 2 weeks leading up to her diagnosis. I put these pains down to 'growing pains' and when i asked her if she wanted some Calpol or Ibrufen she would skip off or ask me to watch her do a cart-wheel. Then one Friday in early May, Robyn's teacher called me over after school and said that she had to be taken out of assembly that morning as she had such bad pain in her right knee. That weekend saw us back and forth to our local hospital and to the out of hours GP service - everybody concentrated on her leg and when this was manipulated it cause little pain. Finally, on the Monday I turned up at my GP surgery and insisted that Robyn was referred to a Paediatrician. At this stage Robyn was in agony, she even tried to get out of a moving vehicle to change her position in the hope that this would eleviate the pain.
Over the course of that weekend she had been diagnosed with hypermobility syndrome, an infection in the pelvis and a pulled thigh muscle. Within seconds of being examined by the paediatrician at Frimley Park Hospital, I was told that he could feel a mass. There was no mention at all that this could be benign and I remember someone googling the word 'Neuroblastoma' as I past one of the departments computer monitors.
Robyn was eventually given morphine for the pain from the tumour (coming out of her pelvis) pressing against her spine causing terrible neuropathic pain. At last the poor child was given some relief....
We were then sent to The Royal Marsden and we automatically felt that we were in the right place even though Robyn continued to be in so much pain. Greg and I were told that they felt it was Neuroblastoma but a biopsy was needed to confirm this and this had to be carried out at St Georges in Tooting.
We were in St Georges for 6 weeks initially. Robyn had a biopsy taken and a hickman line and a foley catheter put in situ, she then commenced chemo that evening - even before the results of the biopsy were back as there was a imminent risk of paralysis because the tumour was pressing on her spine.
It took weeks to get the pain under control as neuropathic pain doesn't respond to morphine and the like and she ended up with Fentanyl patches, fentanyl lozenges (lollypops), morphine and gabapentin (Neurotin). This was one of the lowest times for her and she switched off for the most part and watched Cbeebies all day, everyday. She had 3 rounds of chemo during her initial stay as each time we felt we had the pain (and by this time, the chemo induced vomiting) under control Robyn would get an infection and that means at least anther 48 hours in hospital while blood/swabs are cultured and IV antibiotics commenced.
Robyn was diagnosed with stage IV Neuroblastoma because neuroblastoma cells were found in her bone marrow - this being the secondary cancer. The fact that the tumour was 2/3rds mature Ganglion cells made no difference to the fact that aggressive neuroblastic cells had found their way to her bone marrow. This, along with her age put her in the 'high risk' catagory. High risk children in the UK have a 20-40% chance of survival (depending on which hospital you are treated at and what your child's consultant tells you). So. she had nine rounds of chemo every ten days (phew!), stem cell harvest, 9 hours of surgery which removed 99% of the tumour (phew again!). Robyn then recieved a stem cell transplant that saw her in intensive care with infections and central line removal for a week, followed a few weeks later by 14 rounds of radiotherapy to the primary tumour bed. Only an oncology family will appreciate the amount of blood draws, CT scans, MIBG scans, bone marrow aspirates, vomits, dressing changes and an exhaustive amount of medication. AND when your child is on steroids? well I cannot even begin to explain... ;-)
Even though Robyn's surgery to remove the primary tumour was a success, it was growing out of the nerves in the sacrum and resection damaged the nerves that serve her right leg. This left her in severe neuropathic pain, hypersensitivity in her right leg and foot and unable to walk for 5 months.