How I Coped with My 2 Year old Sons Cancer Part 2

I am lying in bed that very night.  I feel my head spinning, butterflies in my tummy all of a sudden I feel sick...... I get up and go to the bathroom after a while i wash up and look into the mirror.....The shock is finally setting in.....I wonder to my boys bed and stare at him while he is sleeping.....He looks so content.....Dreaming of angels i bet......as i think that I kneel and look up and i pray to those angels in his dreams PLEASE LOOK AFTER HIM PLEASE MAKE HIM BE OK PLEASE PLEASE PLEASE DON'T TAKE HIM FROM ME........As i watch him sleeping the questions begin......

Is this my fault......What could I have done to change this......Was it something from the pregnancy........Is it a punishment for me.......Is someone up there teaching me a lesson.......why him and not me??? I would do anything to take his place!!!!!

I sat for hours watching him sleep thinking about it and wondering where to go from here.....

The brightness in the room woke me and the words MAMMY made me jump up i suddenly see these two big eyes looking at me and a huge grin from my baby boy he puts his arms out to me and gives me kisses i soon realise i fell asleep in his room :) 

i hold him in my arms and take one look at him and feel this warm strong positive feeling from his body...." you are going to be just fine ain't you little man" i say to him :) 

I get his breakfast and he is sitting eating away and i find myself making phone calls packing bags for the hospital and racing around full speed ahead.  I can do this......I have to do this......I have to smile at my boy......He is only small he doesn't understand whats about to happen and i cant be the one to fall down and cry and be depressed about this......If i am down about it he will feel it!!!!! There is going to be nothing but 110 % positivity in this house and from whoever visits I MEAN THAT!!!!!! If there is enough positivity it will pay off.  

We get plenty of phone calls and visitors that day....The support is over whelming and shocking at the same time......People who i wouldn't normally speak to are giving prayer cards, medals, presents offering help etc.  Its amazing.......

Its Monday morning 5 am and we are up and on the way to hospital.  He is booked in for CT Scans and .. booked in to have his operation first thing........I have a huge huge knot in my tummy i cant help but stare at my baby boy wondering will he over come this....Even though you try to be as positive as you can you always have a few negative thought in the back of your mind what if!!!!!

I shake my head kiss him and say everything will be fine.....You are young.....You will forget this.......But we wont!!!!!

As I place my baby boy on his bed in the ward awaiting for his doctor....All i want to do is grab him in my arms and run out the door.....Maybe its a mistake.....maybe he doesn't need this operation......I'M SCARED !!!!!!!

The doctor arrives to let us know that he will be brought down to the operating room now i presumed i was able to go down too but he said there is too many down there at the moment so we will have to wait where we are.....As my boy is been taken away he crys out for me "Mammy" its breaking my heart and i cant hold it in anymore.......I can still hear his crys as the doctor is walking down the corridor......I will never forget it 

The wait was almost unbearable every second felt like 10 hours each time its so hard to sit waiting not knowing how he is wondering is he feeling anything.  I am putting myself through torture thinking of how much pain he will be in if only i knew what to expect......I ant to know exactly what pain he will feel so i can do everything in my power to help ease it........He cant tell me, he is too young, What exactly is going to be going through his mind........Awwww the thought was unbearable...........

Suddenly the doctor walks in and behind him my little brave soldier and is comfy blanket is been wheeled in. He is still asleep and looks the same apart from a patch over his eye........The doctor tells us the operation ran smoothly and that Kian will wake soon.  I am worried that when he wakes he will be in pain.......Sure enough when he wakes he is not in pain.....you can tell he feels groggy by the way he is acting but he is smiling.....My baby boy is smiling after been through such a big operation.....the overwhelming feeling of proudness is amazing...........

After some tests the doctor tells us he doesnt not know if kian will need chemo or not its all depending on whether or not the cancer travelled to the back of the eye so he isnt in the clear yet.....They also asked us if its ok to send kians bad eye to America for tests and to help with future research and without a thought i gave full permission....If it helps with finding a way to stop this of course......

Kian was amazing with recovering that day he ate he drank and even the next day wanted up to play with toys in the ward i was amazed......Its like he never even went through the operation 

but my smile soon disappeared......What if he needs Chemo....That will be so hard on him....Hasnt he been through enough????? 

This waiting game seemed like it was never going to end I really need to know............

To be continued 

Please dont feel bad when reading this as i dont want that and i dont want pity, Honestly this is to show that things that happen in life is all about lessons learned and that these lessons are to make you stronger as a person and stronger for the ones you love  I am a very positive person most of the time and this is the purpose of this blog post.....I want to share some positivity to the ones who need it but to hear stories like this is the way to do so i think people learn from hearing about other peoples life experiences I know i do :) 

To see part one click here :) Thanks so much to you all so far for your lovely messages i did not think i would get such a positive response :) 

I love love love hearing from you all :) I make it my duty to read each and every one of you comments and every time i get a comment from you it highlights my day thanks so so much to you all xxxxxxxxxxxxxxx

How I coped with my 2 year old Sons Cancer Part 1

Im sitting down, I cant feel my legs, I can feel my body.  My breathing seems to have got heavier.  My throat is feeling tight.  The sound around me has suddenly got muddled like what you hear under the water in the swimming pool.  I can actually hear my own heart beating so loud and so fast its like someone is in the room banging a drum.  I look around me and all i see is faces looking at me, Sad Faces, i see my 2 and a half year old boy running around like he normally does when he is at home playing smiling away, i look at the father of my sons face and he is looking at me with a shocked face.  Then i hear someone call my name repeating my name over and over.  I am suddenly looking back at this stranger who is calling me 

"Nina did you hear what i just told you?" "Do you have any questions to ask me?" "Do you understand what i am after telling you?" "Do you need time to take it in" "We will leave you for a few moments and come back" !!!!

What do you mean do i understand..... I am confused.....What is going on .........I try to trace back to before i was sitting hear all confused........ Oh yes we are in the hospital to get my little boy checked out......I am sitting in the waiting room for My little boys name to be called out.  He has just been in with the doctor after getting drops in both eyes to expand his pupils so they can examine the inside of his eyes.  Just routine i was thinking.  

We get called in and im sitting thinking mmmm this is where the doctor will tell me that Kians sight in one eye is not 100% i kind of knew that anyway as i done the test at home on him i covered the "good eye" and asked him to look at his big sister i told his big sister to move but he didnt follower her that when i thought ok he might need glasses.  

So the doctor asks do you have any idea what might be wrong so i told him what i thought.  He says No its worse.  "oh god this is why i am here.....this is why my heart is thumping......I remember now.....

"Your son has cancer.....he has Retinoblastoma.........he will need an operation ASAP......If he does not get this operation as soon as possible there will be nothing we can do.........he will loose his eye and eye socket......... he quite possibly need Chemo......He will have to get a "Freddy" ..............."

This was all in the space of 5 minutes but it felt like more.......If a lorry dumped a tone of bricks on top of me i wouldnt have felt as sufficated as i did in those 30 seconds.......I look at my son again and say "But he is running around....he is smiling,,,,he hasnt been sick........he hasnt bumped into anything.....he is NORMAL.....Why.......Where......How........WHAT!!!!!!!

I slowly started to take it all in when the doctor left the room.....I kept playing what he said over and over and over.......I am still numb......I feel tears flowing out of my eyes down my face but feel no emotion IM IN SHOCK!!!!!!! 

The doctor comes back in and tells me to bring kian back in two days to give us time to take it in and get things organised at home and they will get straight into operation and treatment.  

Im walking down the corridor of the waiting room looking around me i feel like everyones looking at us like as if they know....But to be honest my face is probably telling some of it........

My phone rings its my dad.....I dont even remember what i said to him.........but realise after that i told him kian has cancer.....I would have never done that if i was thinking straight i would have waited i dont even know why i told him maybe it was the shock..........

I am sitting in the car on the way home while my baby is in the back eating chips from McDonalds his favourite......Having this overwhelming feeling of not grief but something like it.......I am thinking what just happened was i told this.....am i dreaming....this is a nightmare.....yes thats what it is i am going to wake up i really am......Suddenly a voice tells me "No Nina its not a dream"  I must have been speaking my thought out loud as kians dad is looking at me saying "No No Its not a Dream" his face looking as pale as mine........

We are back at my house and i walk in to be greeted by my little girl and my 8 month old baby.........The babysitters friends of mine are asking how he got on.....That's when i finally broke down.....That's when it finally came out of my own mouth and heard what i was saying....Kian has Retinoblastoma........

My dad enters i break down......I ask him.......How do we deal with this.......How will i manage this.........he couldn't answer as he was in shock.....That when this overwhelming strength came over me Its like life suddenly became reality again once i heard myself say them words to my dad i suddenly realised "I have to deal with this,  I have to manage this i have to be strong if not for me but for my baby boy!!!!"  He is a baby he needs guidance if i show him strength he will learn to be strong he will be strong he will beat this........The more positivity he sees the more he will beat this but my stomach was still in knots i felt ill very ill.

I had to start making plans......where do i start??..........   To be continued :) 

This is in reply to an email i got from a lovely woman who has asked me one question......"How did you Cope with hearing your son had Cancer" "How did you stay so positive" "How do i cope.....I dont know what im thinking or doing"  This lady has written to me as she too has just been told that her son has been diagnosed with Retinoblastoma.... So i have decided to write about my journey as a mum of a son who has had Cancer I really hope that this will help others and help this woman on her journey and let people know that they are not on their own.......The hardest thing in this world is seeing your children suffer with anything be it a cold.....a bug.....or even a grazed knee but to hear the words your child has Cancer well nothing can explain how it feels but hopefully by writing this little story it will help you understand and maybe help you through the hard time your child is going through :)  

Please dont feel bad when reading this as i dont want that and i dont want pity, Honestly this is to show that things that happen in life is all about lessons learned and that these lessons are to make you stronger as a person and stronger for the ones you love  I am a very positive person most of the time and this is the purpose of this blog post.....I want to share some positivity to the ones who need it but to hear stories like this is the way to do so i think people learn from hearing about other peoples life experiences I know i do :) 

I love love love hearing from you all :) I make it my duty to read each and every one of you comments and every time i get a comment from you it highlights my day thanks so so much to you all xxxxxxxxxxxxxxx

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!!!!!!

Retinoblasoma!!!

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..........

ITS WAS THE HARDEST TIME IN OUR LIFE TO SEE OUR SON GO THROUGH THIS BUT IN ALL HE CAME OUT SMILING AS IS FIT AND HEALTHY SOME PEOPLE ARE NOT SO LUCKY I HAVE HEARD OF CASES WHERE A CHILD HAS LOST BOTH EYES OR EVEN WORSE THEIR LIVES !!!!!!!

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