Sunday, 24 July 2011

A cause thats very close to my heart "Retinoblastoma"

Hi everyone i feel that i have to raise more awareness about this particular illness that is very common to children and it becoming more popular these days.....Its close to my heart because unfortunately my son Kian was diagnosed with it when he was 2 1/2 years old.  The illness is called "Retinoblastoma" 

First of all let me explain what this illness is in scientific words then i will tell you of our experiences with it....I will also share to you the signs of it and how you as a mum aunt grandma or just a friend can actually save a childs life!!!!!!


We all know that life is always not fair and that there are no guarantees. This becomes painfully evident when a child is diagnosed with cancer.
There are two types of retinoblastoma. Familial retinoblastoma is hereditary, is passed from parent to child, and is bilateral (affects both eyes). Familial retinoblastoma represents 10% of cases. It is associated with a long-term predisposition to other types of cancer. The second type of retinoblastoma, responsible for 70% of all new cases, is unilateral(only one eye is affected). It represents the non-heritable form of the disease, and carries no increased risk of a second tumor.
Ninety percent of all retinoblastoma cases are diagnosed within the first three years of the child's life. On average, children with familial retinoblastoma typically are diagnosed at four months of age. When there is no family connection, the cancer is usually diagnosed when the child is approximately one to two years of age.

Pediatricians can screen for vision and/or life threatening eye diseases. The minimal "well baby" screening for newborns is done during the first three months of life should include the following exams:
  • The Red Reflex: checks for a normal red reflection in the eye that occurs when light travels inside the eye, hits the retina and the blood tissue, and is reflected back.
  • The Corneal Light Reflex: when a light is shined into each cornea a symmetrical beam of light is reflected back in the same spot on each eye. This helps to determine whether the eyes are crossed.
  • An Eye Examination: to check for any structural abnormalities. From six to twelve months of age, the eyes' ability to fix and follow objects both individually and together is evaluated. Between the ages of three and five, the examination of the eyes is coupled with testing for visual acuity, color vision and depth perception.
Parents also may want to look for eye abnormalities by directly examining each of the child's eyes under good lighting conditions. Both eyes should appear equal in size, be aligned, and should be able to move together and focus forward. Parents can observe the red reflex can be seen by dimming the room lights and using a flashlight to shine light directly into the child's eyes.
Unfortunately, because retinoblastoma is a rare cancer, some pediatricians may fail to detect it early enough

Signs and Symptoms 
Often the first sign of retinoblastoma that is noticed is leukocoria, a whitening of the pupil that looks like a "cat's eye". This whiteness can be seen in certain lighting conditions. It is often noticed in photographs of the child taken with a flash, which usually causes the eyes to appear red in the picture. Instead of the normal red reflex, you may notice a white pupil in the photo, which comes from the white surface of the tumor itself.

It is extremely important that a child suspected of having retinoblastoma be evaluated by a team of specialists, including an ocular oncologist, a pediatric ophthalmologist, a radiation oncologist, and a pediatric oncologist within an ocular oncology center. Children with this rare cancer require the most advanced testing and management to ensure the cure of the cancer with preservation of the greatest amount of vision. Specialized testing is very important to confirm diagnosis, as there are no blood tests available to confirm a diagnosis of retinoblastoma. Unlike tumors in other parts of the body, a biopsy cannot be performed due to the risk of spreading cancer cells outside the eye.

The initial Eye exam

Before the initial eye examination, your child may need a MRI or CT of the brain and orbits (eye sockets), with and without contrast (dye). These tests help to confirm the diagnosis of retinoblastoma and look for involvement of retinoblastoma with the optic nerve and any cancer outside of the eye.
Before the ophthalmologist examines your child, an optometrist or ophthalmic technician may take a medical and family history. Your child will receive eye drops that will dilate the pupils of the eye, which allows the ophthalmologist to examine the interior of the eye. The ophthalmologist will discuss his initial findings and possible treatment options.
The doctor may recommend an Examination Under Anesthesia (EUA) and any possible procedures that may be necessary during the EUA. Before the EUA a routine blood sample will be obtained to evaluate the components of the blood. Blood is obtained by a small prick made in a fingertip and a few drops are drawn off. If any of the tests are abnormal, more tests may be necessary to find out the reason. Tests may be performed to measure:
  • Hemoglobin: the substance in the red blood cells that carries oxygen and is responsible for the blood's red color. Lower hemoglobin amounts than indicate anemia.
  • Hematocrit: a measure of the amount of red blood cells, expressed as a percentage of the whole blood that is made up of red cells. A low count may indicate anemia.
  • Platelets: the component of the blood that helps stop bleeding in case of injury.
  • White Blood Cell Count (WBC): the components of blood that fight infection. Children receiving chemotherapy generally have a lower white cell count than normal.

Briefly about our experience 
Kian After he had his operation and while going through his chemo

Kian a year ago after he had to get his eyesocket replaced 

I cant stress enough to mothers these days "to go with your gut fellings" when it comes to your child no matter if you bring them to the doctors and the doctors say "oh its nothing" if you are not happy with that answer dont ever ever go against what your gut tells your after all "YOUR GUT FEELINGS CAN SAVE YOUR CHILDS LIFE" 

That was the case with me!!!!!!!!!!!! I knew about 18 months before Kian my son was diagnoses something was wrong with his eye.....Often people ask me "But how did you know" and i reply " i just knew, my gut was telling me" i first noticed something was wrong when i notices my looking at kian he had a glare to his left eye sort of like a cats eye but wasnt on the right........I thought at first "Nah im imagining things" but i still brought him to the doctor to get check out and of course the doctor said "Nothing to worry about".  I took that as an answer but couldnt help walking out of the Doctors with the same bad feeling.....that went on for a year until one day i took a photo and looked at it.... IT WAS LIKE THE PHOTOS ABOVE !!!!!  I must have brought my son to the doctors about 10 different time and got the same answer!!!! 

until one day i was playing with kian and spotted something white in his pupil of his eye it was swirling around THATS WHEN MY HEART STARTED THUMPING AND MY STOMACH FELT SICK!!!! I knew i wasnt backing down now dont get me wrong i never dreamed it was going to turn out to be cancer but i knew it wasnt right........i brought him to an optician instead and the optician examined his eye told me to go straight to my doctor CAN I SAY ANOTHER WAY TO CHECK YOUR CHILDS EYE AFTER YOU SEE THE PICTURE IS COVER THE GOOD EYE AND GET TO CHILD TO FOLLOW SOMEONE IF THEY SEEM LIKE THEY CANT SEE THAT ALSO MEANS YOU ARE NOT IMAGINING ANYTHING BECAUSE A CHILD WITH RETINOBLASTOMA IN THE EYE LOSES SIGHT OF THAT EYE....i told the doctor i wasnt going anywhere until he examined him proper  , he did and then started making phone calls.  

We were sent straight to hospital and thats where kian was diagnosed.  Unfortunately Kian had to lose his eye because the Tumour had grown to big also the tumour was travelling to the back of his eye which ment he lost his eye socket too.  He bravely had the operation and had to have chemo to get rid of whatever cancel cells was left behind, that was hard on him he was very sick and tired all the time.  But today he is still in great health gets regular check ups and has to have his false eye changed maybe every year depending on his growth spurts......he suffers alot from infections from the eye he lost as its like an open wound but once he stops growing and gets the one eye full time he will be fine..........


I just Wanted to write to you all to warn you about this illness that i feel is not out there enough.......not alot of people know about it....even when kian was diagnosed we, my family even the community was shocked to hear about this illness..... spread the word about this you could save a childs life or even save a child going through such a hard time......thanks so so much for taking your time to read this and i hope you found this an eye opener........i hope in some way this helps families out there and get the word out about this.....

My son Kian to the right with his little brother today :) 
Can i also take this oppurtunity to  thank a few people while im writing this:
Professor o' keefe and the staff from Temple Street Childrens hospital in Dublin who Treated Kian and saved him from the worst.....They were and are incredible Doctors and Nurses in that hospital 

The doctors, nurses and staff of Our ladys Childrens hospital in Dublin who treated Kian while going through his chemo....they helped him and us sooooo much.  They too are incredible people and work so hard 

The nurses of Cavan General Hospital who looked after Kian whenever he was sick or needed anything cleaned

and also i would like to thank our family and friends who gave us support and helped us out at the time we couldnt believe the amount of help we got and really cant thank you all enough we will never forget it!!!!!!

ok thats it from me anyone who has any questions at all it doesnt matter what it is please ask i want to help in any way possible 

thanks for you time 
nina xoxoxoxoxox


The "E" Girl said...

I have never heard of this form of cancer. As a child I was born cross eyed and had to have laser surgery to fix that. I also have a lazy left eye with astigmatism. You're very right about us ensuring not just for ourselves, but our children that they get proper check ups. I'm not a mom, but I know for myself being an only child I have the reverse feelings towards my parents whom will be my responsibility as they continue to age.

Cancer is terrible. My step father's mother at 76 was diagnosed with Grade IV brain cancer. My mom and I were her primary care givers and while she had a full life which hardly compares to that of a child it was still the most difficult thing I've had to first hand be so close to.

Doctors too are fishy. Just recently my mom broke her foot. It's a hair line fracture and the ER doctor's told her it was nothing more than a sprain. Had we not taken her to a foot specialist she'd have returned to work on that foot - she works retail. She's been off it now for 2 weeks for it to heal. I had a doctor misdiagnose me with an infection when I had the flu. He put me on an antibiotic that I had a horrible reaction to on top of the flu. There are good ones and there are some questionable ones. When we find good ones I swear it's like finding a pot of gold at the end of the rainbow.

You and your family are very brave. It's a shame that such tragic events in life have to test our levels of caring and compassion. I wish you and your family well wishes for your health and lives.

Nina said...

@ "E" girl thank you so much for that and you are right all the way but its a challenge that was given to Kian and my family as i see it and we won the challenge........kian is a brave brave boy but am glad he has his bothers and sister because they made him "forget" about what he was going through.........he still has to go through so much but as long as he is cancer free that is the main thing.

my point in this posting is that families including ours is not been told that we have to pay for false eye everytime it has to be changed even if you are on insurance etc which is crazy as that could be twice a year or once depending on the growth of the child it costs €1,000 each time not great for families who dont have money......but its not even all of that its treatments every time he has infections etc...........we are only one family how many more is out there

limegreen said...

Nina, you are such a great mom. i cried while reading your post :'( i hope Kian will be fine cos i can see from the picture that he is such a good little boy. i will pray for you and Kian's health :')

Jenda said...

Hi I'm so sorry to hear what you've all been through as a family but I'm very glad your little boy is now doing well! I wondered if you might be able to look at some pictures of my little boy please as there's been a few pictures with a white or yellow eye and the other is red. We're waiting to see an Opthamologist but worrying like mad. Thank you. My name is Jennifer

Nina s said...

Of course hunny of course i will have a look send some photos to me by email and I will have a look

Jenda said...

I'm so sorry I just realised how old the other comments were on here. I just found this link when looking on Internet.

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