On the 26th May 2010 our family was blessed with the arrival of our Princess Felicia Maria Grazia, I knew then we were in for something special. Marta decided on the name not knowing that Felicia was my Grandmother’s name, and Maria Grazia is my mother’s full name.
Felicia was the perfect child, lively but very mature for her young age. She was most probably the perfect sister and being the youngest she was also the boss of our family! Felicia would decide who would drive her to morning school, mum or dad, where to sit at the table for dinner and who was in charge of singing concerts, as she loved to sing.
At the age of three she was fluent in Italian, Polish and English, and able to switch effortlessly from one language to another. In Italy, at the age of two, she would order her favorite, Spaghetti alle Vongole, especially at her beloved San Montano Beach in Ischia.
Felicia loved Romeo, her little dog an all white, Italian Volpino. To get Romeo, I had to travel to Kent, as she wanted the same dog as her Italian grandma. On her fourth birthday, Mr Cuddles arrived, a White Ragdoll kitten. He truly became the love of her life. She would bath him at least 4 times a week, dress him up as a princess and take him for a walk in the dolls’ pram or in her bicycle basket. The amazing thing was that Mr Cuddle would just sit there and never complaining or running away. Amazing!
Felicia loved school and in January 2014 it was a joy for her to be accepted at Rose Court school, and after passing the admissions test with flying colours, she said to Marta, “I think I like it here”.
Our World Fell Apart...
At the end of January and early February, Felicia was diagnosed with possible tonsillitis and headache. Initially she was prescribed antibiotics and her temperature became normalized, although her headaches continued. She was admitted to A&E at Leeds General Infirmary on the 18th February 2014 with drowsiness, severe headaches and vomiting. After several tests and being kept in overnight, Felicia was discharged.
Felicia was again very ill on the 22 February and we went to hospital, she was kept in overnight and than discharged on the Sunday 23rd as the pediatrician could find nothing wrong with her, and gave us an open letter in case there were any issues, allowing us to go straight to the ward!
On Monday 24th at 5am Felicia woke up with a recurrence of her symptoms, vomiting, headaches and problems with her balance. After routine tests and an emergency CT scan the results showed a brainstem lesion, likely to indicate a diffuse pontine glioma. The following day Felicia had an MRI scan under general anesthetic, which confirmed a high-grade lesion characteristic of a diffuse pontine glioma. There were also signs of hydrocephalus and she commenced on steroids and had an ETV to treat hydrocephalus.
In February 2014 our world fell apart, as she was diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma; a childhood brain tumor, located in the pons, which to date, has a zero survival rate.
At the time I remember vividly being told that the only treatment available to us was palliative care. At first I did not know what it meant, and had to look it up. I then asked about our options, not having understood the first answer. I asked “what are we talking about? Surgery? How many years do we have left 2, 3 , 5 years?” The answer came immediately, we were not talking about years but 3 to 6 months at most 9 months.
At this moment I froze in shock and disbelief as I could not comprehend what I had been told. Here we are in 2014 where billions of pounds are spent in research, and development and we do not have any answers of how to treat an innocent 3 year old child! I felt this could not be true and I embarked on a mission to find something that would stop this monster from growing, until there was a cure to save our little princess.
After reviewing the scans we were advised that the only treatment available to us was Radiotherapy and Chemotherapy using TMZ. After extensive research, we refused the chemotherapy, as we could not find any evidence that this was effective in curing DIPG. The doctors were not happy in fact they warned us that this was the gold standard for treating this type of tumor.
The question is: gold standard for whom? The patients, or the pharmaceutical company?
Ironically in May of the same year, the same doctor told us that they no longer offered Chemotherapy for our daughters’ tumor as it was not effective! What should I have done at that point when only in February they almost insisted we carried out the chemo treatment for Felicia?
Felicia underwent 54Gy radiotherapy to the brainstem and 30 fractions, which was completed on the 23rd April 2014.
Cure or Stop Gap?
The first initial scan 3 months post radiotherapy showed a decrease in the size of the tumor and enhancement. A further scan on 23rd September 2014, showed no sign of changes in the size of the tumor but it showed interval changes in the exophytic component enhancement. We were told that this could indicate further changes post therapy or early sign of progression.
During this time I was continuing in a our quest for an opportunity, a cure or even a stop gap to be able to enjoy some more quality time with our daughter and I travelled across Europe, Middle East and the States without much luck, until a break through came from Bristol.
After reading an article about Daisy**, a young Girl aged 6, diagnosed with the same tumor as Felicia, I managed to get in touch with the Professor who was doing the treatment and an appointment was booked. In November 2014 Felicia was seen by the Professor and his team at Bristol Children’s Hospital and following an MRI scan we were told Felicia could have the pioneering treatment.
As it was close to Christmas and Felicia was well we decided to rearrange the operation for the first week in January 2015.
After a relatively good summer Felicia returned to school and flourished, despite all the side effects of the medication and regular visits to the hospital. This lasted until Christmas day 2014 when she again started to complain of headaches. Immediately after the holiday and following another MRI scan we received the worst news, not only had the tumor begun growing again, but 2 further lesions were identified.
"My legs wont listen'''"
On the morning of the 20th January 2015 Felicia woke up but there was something wrong. She said, “Mummy my leg does not want to listen”. Over the next 48 hours she was no longer able to use both her left leg and arm and therefore unable to walk or stand. Our life took another knock!
At this point our only hope was the treatment in Bristol, but it seems that that was not meant be. During the previous months I had asked when the second re-irradiation would be available to us. At first, we were told a categorical “no”, but after I brought them evidence of this showing effective results in other countries, the hospital offered us the treatment. I then contacted Bristol where I learned that as we were offered this re irradiation treatment we would no longer qualify for Bristol’s treatment, which is only available on compassionate grounds when there is no alternative!
This was a major set back, as during the previous 11 months all the evidence I had accumulated made me realize that radiotherapy only offers a small stop gap, and after every radiation, the honeymoon period reduces. I was then told that once 10 weeks had passed post radiation Felicia could be considered for the treatment at Bristol.
So back to hospital, steroids and new radiotherapy, this time we had been told it would be for her whole back and head. The risk, however, would be higher and there was the question as to whether, the doctor/anesthetist would carry out the procedure.
On the day we went to the hospital for the mask fitting I was taken in a separate room with the doctor and nurse to go through the consent form.
In the meeting the doctor explained at great length all the risks of a general anesthesia and the fact Felicia could die during the procedure. I then asked him about the options. He replied: “well we are not going to cure her, at the most buy a little extra time”.
Well, there were no options then, I stated, where do I sign?
On 9th February 2015 after over 2 weeks of radiotherapy Felicia was able to stand and walk with help, had limited use of her hand but that did not stop her drawing or playing with her favorite cat Mr Cuddles.
Again she proved that in life we should not take anything for granted and her fighting spirit courage and strength prevailed.
In March we decided that we would take Felicia to Disneyland Paris and to Lourdes, and then to ski for a week in Austria. It was a very ambitious plan, so we hired a motor home and went to Paris to see her favourite Princesses. Felicia was not well and we were not sure if we would make it, so we decided to take it day by day. On the way to Lourdes she had temperature and at that point we said, “Ok let’s go to Lourdes and then back to UK”.
We went to Lourdes, in freezing weather. With Felicia we all bathed in the blessed water. The next morning Felicia was incredibly well, laughing, joking and singing. For three days she did not need any medication to control her fluid intake. We then had a great family holiday in Austria.
On our return to the UK Felicia was able to go back to school and had regained most of her strength in the left arm and leg.
Felicia was a child who loved school and her favourite teacher Mr Mckinley, often she would wake up at 4am as she did not want to be late and miss the morning story.
Every one was absolutely amazing, kind and supportive from the head teacher, Ms Pickering, Mrs Hall to the school dinner ladies. We could never thank them enough for all their kindness and accommodation
On the latest scan of 18 June 2015, 3 new masses were discovered, 2 in the cerebellum and 1 in the ventricular.
On July 18 we were booked in at Sheffield Hospital for Gamma Knife treatment, unfortunately before this, a new MRI revealed a total of 7 masses, 6 were treated and we left the hospital on the same day.
At this point the hope of the Bristol treatment totally collapsed; they could only treat one mass. We decided to take Felicia to Ischia to see her grandparents and go to her favourite beach.
We had a fun time, with a picnic on the boat and made some new friends with Fluffy the rabbit, and an amazing summer birthday party (and why not) but unfortunately our holiday was cut short, as Felicia had to be airlifted by helicopter to Napoli mainland hospital. After a short stay we went back to Ischia for a few days and then back to Leeds.
Our latest MRI scan on Wednesday, 16th September 2015 showed growth, 3 new metastasis, in the brain, and 1 in the spine.
Diary note: Week commencing 20th September Felicia has deteriorated she has been off steroids. We start to use oxygen while she was sleeping and this has helped.
Week commencing 19th October 2015 I came across the Virotherapy centre in Riga , Latvia. After meeting with the consultant we began treating Felicia with the Rigvis virus. Felicia managed to have six treatments.
Felicia had a weakness on the left hand side, with limited movement of her left arm. She was able to eat and drink normally, occasionally requiring oxygen. Five days later Felicia lost her eyesight, I believe this was due to a lesion on the cryax optical nerve.
Despite all of the above challenges, she never once moaned, complained or refused to take her medication. Felicia was always ready to sing and most importantly we all gathered round the family table, to eat together.
Hope was give to us by a clinic in Germany, we knew the risks were high and so were the costs, but we could not possible stop as long Felicia was able to fight and we would not consider giving up. Felicia was still living he life to the full, singing and playing whenever she could. If I had followed the doctor’s advice our beloved daughter would not have lived 22 months!
So, we asked Felicia what do you think? Shall we go to see if this doctor has any magic medicine? Her answer was “ok let’s go, let’s get in the car now”. So we did.
Unfortunately we only managed to have a consultation visit and no treatment as Felicia was taken ill and went into the intensive care department and was placed on a respirator. What followed were very stressful days as I was trying to arrange for an Air Ambulance to bring Felicia back to Leeds. Unfortunately, once I had booked the flight we were told we could not bring her back as there were no intensive care beds in the whole of the UK!
As I was arguing with our UK consultant I was called by Marta to come back to intensive care as they were going to take Felicia off the respirator. I questioned them as Felicia would pass away, the doctors in Germany promptly reassured me that it would be fine as she had been breathing on her own since the morning. Once the pipe was taken out Felicia said “Mummy I did not like the pipe in my mouth” Why? was Marta reply, Felicia said “Because I could not sing”, and then she started signing, ‘Away in a Manger’.
The next day Marta and Felicia were flown back to UK and with the help of my friend, Mark I drove back to Leeds.
The night of 6th of December 2015 Felicia passed away.
This last 2 years have been a very steep learning curve and we could not have survived it without the help and support of our friends, family and sometimes strangers.
Marta has been an absolute rock, knowing no limit and being totally committed, spending every single day and night with Felicia, giving more love and commitment than I could ever imagine.
Anastasia, Felicia’s older sister has been an absolute star, always laughing and ready to do whatever Felicia wanted, drawing, singing, painting or washing Mr Cuddles.
Raffaele Felicia’s big brother has suffered in silence, being the eldest and beginning his route to medicine. He has shown great composure, strength and maturity, his caring attitude and love for his sisters has been totally evident.
Felicia Maria Grazia Mazzella
26th May 2010
6th December 2015