Faydra

Background: Faydra has tri-lateral retinoblastoma meaning that she has malignant tumours in both  eyes as well as 2 separate malignant brain tumours (one diagnosed at 4.5 months old in January 2004 and the other at age 2 in October 2005).  Her presentation of the  disease is rare because of the presence of the brain tumours along with the  eye tumours.  Faydra has the non-heredity form of retinoblastoma which means it was just by chance that Faydra was born which this cancer, Bryan and I are not  carriers of the genetic mutation.  However, Faydra will have a 50% chance of passing retinoblastoma onto any of her children.

Our story:

The fight of one tough little girl
 

     Just after Christmas 2003, when Faydra was about 3 months old, we noticed that she had a funny shake to her eyes especially when lying down.  Faydra had been born 5.5 weeks premature and we thought maybe it had something to do with that so we took her to our family physician in Fergus, Ontario in early January.  He did not know what was going on and referred us back to the pediatrician in Kitchener, Ontario the following week who had delivered  Faydra.  Upon examination Faydra's pediatrician was also unsure of what the eye shaking meant (later we found out this was called a nystagmus) and recommended we complete a CAT scan in Kitchener as well as an eye exam with an opthamologist the following week.  The opthamologist saw her first and he said that there was something he thought the eye doctors at sick kids should take a look at, which we would later find out would be the retinoblastoma eye tumours.  We left the appointment worried but completely unaware of what his findings were to mean.   The CAT scan took place on a Thursday afternoon and we were told that results would be available on Monday at earliest.  The next day Faydra was due to have her vaccinations and I took her back in to see our family doctor in Fergus alone as Bryan had to work.  Our doctor opened the appointment room door, walked in and dropped the bomb that has forever changed our lives.  Your daughter has a brain tumour about the size of a golf ball at the base of her skull just behind her nose.  It was my worst fear come true.  Something in the back of my mind had told me that this was coming.  We spent the next several hours talking to the pediatrician in Kitchener, packing clothes and travelling down to meet with the neurosurgical team at sick kids that night.  Everything was a complete blur. 

Upon arrival at sick kids the doctors showed me the CAT scan results which showed a tumour in the left eye and the brain tumour.  Over the next 4 weeks Faydra underwent a failed brain biopsy, a successful craniotomy, numerous eye exams, blood test after blood test until she was finally diagnosed with Trilateral Retinoblastoma.  Following the craniotomy we were told that surgical removal of Faydra's brain tumour could not take place because of it's proximity to her carotid artery and fear of doing damage to that area. She had to battle some hormone imbalances until medications could regulate things and we were told that the doctors at sick kids had never treated a child with trilateral retinoblastoma even though kids come from all over the world for this particular unique treatment. They did not hold much hope for a successful recovery for Faydra being that the therapy was untested on a brain tumour such as Faydra's and due to her hormone irregularities.  We began regular audio tests and eye exams under anaesthetic followed by two eight hour days of systemic chemotherapy every three weeks and after having been in the hospital a month moved into Ronald McDonald House.  During this time they also inserted a port called an OMAYA reservoir through the top of  Faydra's head reaching into the spinal fluid behind her nose along with the standard port-a-cath under the skin in her chest. In addition to her systemic chemo, Faydra recieved chemotherapy roughly every week into the OMAYA reservoir.  She underwent a total of 8 rounds of systemic chemotherapy finishing roughly at the end of July 2004. During this time she had blood taken almost daily and numerous blood and platelet transfusions. Her spinal fluid was cultured each time she received the OMAYA reservoir chemo and for a very long time it came back positive for  retinoblastoma tumour cells or suspicious looking cells.  Her eye tumours required some cryotherapy and laser work several times but were actually very well controlled being that we found them relatively early because of the brain tumour. 

 When we first arrived at the hospital Faydra had only bright light vision because of the brain tumour pressing on the optic nerve. No one knew if sight would come back or not if the tumour's pressure on the  optic  nerve could be reduced. However, Faydra has regained some sight, approaching normal vision in the right eye and much weaker vision in the left eye.  We have undergone many VEP eye testings to try to determine how much vision Faydra has but at this point it is difficult to say for certain. We have been patching Faydra's good eye in an attempt to strenghten her left eye's vision for about the last year.  We also found out that Faydra is farsighted and should be wearing glasses but at this point will not allow them to stay on for more than about 10 seconds.   We continued the head chemo until September 2004 when she underwent an  autologous stem cell  transplant.  We were hospitalized in isolation for close to a month while  Faydra's immune system started to recover. Following the stem cell  transplant we began the head chemo  injections again at weekly intervals until the spring of 2005 when we began  biweekly treatments instead.  We were able to finally go home but Faydra  had to stay in strict isolation for 6 months for fear of infection.  In August of this year there was a suspicious area that appeared to be a cyst  that turned up on an MRI scan. We repeated the MRI and discovered that the  area had enlarged.  Therefore, we scheduled Faydra for another craniotomy to  get a section of this area but when they opened Faydra up the doctors were  surprised to find that it definitely appeared to be retinoblastoma.  The neurosurgeons removed what they could and then we waited for the results of the biopsy.  They confirmed that the new lesion was indeed retinoblastoma  and we began discussing treatment options.  Faydra made an incredible recovery from the craniotomy as usual and we were released from the hospital  in 3 days.  This new tumour is not a spread from the old tumour but rather a whole new separate growing one which has baffled the doctors because of it's  location.  The decision was made to start 4 weeks of Monday to Friday everyday radiation at the end of October.  Faydra has been dealing with the treatments extremely well.  Following the radiation therapy we are going to start 2 rounds of systemic chemo again and continue to treat the spinal  fluid with the OMAYA chemo.  This will mean having to stay in Toronto again for about 3 weeks each round but we hope to be able to come home for Christmas.  They are concerned that Faydra's bone marrow is still too suppressed to handle the systemic chemo but they will be watching her closely to ensure that she is doing okay. 

 Faydra is a very happy little girl who has never looked sick even with all she has been through.  We are very fortunate to have the support of wonderful friends and family.  Some of our friends have started a website about our little angel if you would like to keep up to date on her progress.

(www.faydrasfriends.ca). 

 Here is a link to her storyboard from the Blind Ball.

 Angela, Bryan and Faydra Fairfield