Final Part of How I coped with my 2 Year Old Sons Cancer

After all the tests and CT scan we finally had the answer to all our question.....Will he need Chemo....The answer was yes he will need about ten goes of Chemo to get rid of the remaining cells after the operation :( 

Oh my heart fell the moment them words were said.  My poor baby has been through enough....Why????

I sit by his bedside felling butterflies in my stomach with the same questions as before running over and over again

I wish I was going through this instead of him.  Sudden Kian wakes up asking for brekkie and wanting to play with the boy across from him who was very ill.  He was just like an other boy.  You would not even think he was just after going through an Operation.  I was stunned.  We got the go ahead to go home and would be contacted when his first go of chemo would be.  

I was so grateful to be able to bring him home and the fact he was walking out the door himself. 

We finally got home and all he wanted to do was play I was running around after him like a headless chicken afraid he would fall been too over protective to be honest i was putting myself into more stress than i needed.  

I finally got a phone call about Kians chemo.  They wanted to start it ASAP to stop the cells from growing further.  

Aww god my poor little man i had so many questions.....Will he lose his hair?  Will he be so sick that he wont eat and get really thin? My head was like a whirlpool 

We arrived at the Hospital and his doctor came to meet us and explain everything about the Chemo the whole process and of course answer any questions I had.  

She told me that 10 goes of the chemo will surely clear kian up.  

She answered my main questions.

Kian might not lose his hair because its only 10 goes but he may lose a little.

Kian's taste buds might change due to the chemo because its known that one of the side effects is a metaliccy taste in the mouth He may be sick on the days he recieves the Chemo but they will give him an anti-sickness medicine to subside that.

Most of all the 10 goes of chemo will not effect his fertility (awww relief) 

There was so many answers she gave me but these were the main ones i needed to know.

So Kian needed to go for another little operation to get his "Freddy" aka a port  It is a small tube that goes through the skin of the chest, into a large vein that leads to the heart, and ends in the right atrial chamber of the heart.  It lessens the poking and prodding of needles as they can take blood test in which there will be lots of it during his treatment and of course they can give him his treatment through this also.  For anyone who wants to know more information on the "Freddie" click here and this will tell you all you need to know 

I was so nervous about his first treatment as i was fearing the worst as any mother would.  He is a 2 year old child and this is such a strong medicine how is he going to react to it.  I wanted to scream out i was so frustrated.  We were shown to the ward in which Kian will be staying for a couple of days.  They want to keep an eye on him on the first go to see if he takes to it.  If he does and everything is ok we can make day trips for his remaining treatment.  

Now i honestly can tell you i got a shock of my life when i reached Kians ward.  Never in my life have i ever seen anything like it.  The ward looked amazing, it didnt even look like a hospital ward.  It looked like a fun place for children with the added bonus of a bed.  They had a kitchen for the parents to store their food and a room for parents to eat and watch telly.  They had a big playroom for the children too.  Kian was excited poor thing 

The one thing that shocked me was the amount of sick children in the ward.  Oh my goodness believe me if you havent experienced any of your children been sick (in which im so happy you havent) you have no idea how many children are sick with cancer etc.  There was a baby there not even 6 months old who had the same as kian but lost 2 eyes, there was a gorgeous (they are all gorgeous) little girl who has had alot of treatment with lukemia and her mum told me it wasnt looking good for her she looked so pretty dancing around and singing she told me she lost all her hair and i told her she was the most beautiful girl god created and that she had the most amazing eyes she replied "ye i know" i couldnt help but smile.  I was in shock!! There was an old boy there playing in the playroom he was just finished his chemo and his mum was bringing him some food he told me what it felt like to get the treatment and that he doesnt like the food he used to eat because it tastes funny.  I was like a sponge taking all of this in as i needed to know everything i needed to know what my boy was to expect.  

Kian's little operation to get "Freddie" in ran smoothly and he soon was been connected for his first round of chemo.  He was given the anti-sickness medicine and they took some blood test in which they will be doing everytime he gets it was they have to keep an eye on his blood count.  I had a feeling i had alot more to learn along the way.  I was fearing this was going to be very hard work he had to sit in the bed for at least 4 to 6 hours straight while the chemo was slowly been pumped into him.  I thought a 2 year old child is not going to sit for that long but he surely did.  I kept him entertained with toys on his bed.  He was such a good little boy sat that whole time while this strong medicine was been pumped into him.  I felt like the proudest mother in the world.  When it was finished he was so so tired.  It took alot out of him he also was sick which was to be expected even with the anti-sickness he was still sick but not as much as he would have been without it.  He took to the medicine without any major effects so we were allowed to go home after a couple of days with warnings.  We were told that kians white blood cell count will go down for a period of time because of the chemo and that needs to be watched he is not to be in contact with anyone who even has the slightest cold or sickness.  He has to wear a mask over his mouth in public for a day or two after as he could literally catch anything.  Everything is to be sanitised and hands need to be sanitised at all times.  if someone is in contact with him they too need to sanitise their hands. 

If he gets sick at all it could be dangerous :O 

Oh the worries started and i could feel myself starting to become crazzzzzzy with over protectiveness.  I scrubbed the house from top to bottom i asked people to take their shoes off before coming into the house i had a hand sanitiser at the back and front door.  I didnt take him out of the house until his white cells were back to normal.  I was afraid his siblings would get sick and pass it to him so i loaded up on vitamins and gave his older sister a pocket hand sanitiser for her school bag.  

It was a little overwhelming at first but once Kian got to the 3rd treatment i started to relax a little and it became more of a routine than a nightmare.  

Kians granddad even got into a habit of bringing him to McDonalds after his treatment and everytime Kian went to the hospital he had to go to McDonalds straight after and you know what still to this day 5 years later everytime Kian goes for his check ups at the hospital he still has to go to McDonalds after lol :) 

To cut this story down Kians treatment was hard work but so so worth it yes he lost weight,  he lost a little hair and yes he was sick after his treatments he was also quite tired for a day or two after but he still acted like a 2 year old child he still played still enjoyed the trips to the hospital and made alot of friends along the way.  He has been the most strongest boy i have ever known and it opened up my eyes alot to life.  Children are amazing they are so so strong and the fact they are so strong they dont sit and "feel sorry for themselves" they just take everything as it comes.  To be honest my son has thought me alot about life and about they way we as adult approaches life.  We are older we think more and if we were half a strong willed as children are we would get through alot more than what we do.  

I know for a fact i have become stronger since going through this with him 

He is amazing even with the fact he is old enough to understand that he will be a little different to his friends aka he has only got one eye he doesnt care he says he is special in which he is!!!!

Its amazing so far he has been in the clear since he got the Chemo and i thank god every day for that as there is always that fear in the back of your mind that it could come back i dont let that get me down its is just a typical worry all mothers will have.  Kian even shrugs of bullys who has been making fun of him and his false eye.  We cant stop that but we cant teach Kian to be strong and to ignore the comments he gets.  To this day he has been called names gets some horrible horrible comments by both kids his own age and of course older children but he still shows his strength he is amazing.  

So that is a small story of how I have coped and have been coping with my sons Cancer.  To be honest alot of it is over but there is the after math too.  Never be afraid to talk about it with people even if it is years later it does have a huge effect in yours, your families, and of course your childs life forever but if you stay strong your family will stay strong and once you support each other and talk to each other you too will pull through this.  i feel so so luck to still have my son in my life and i feel blessed as i know not everyone is as luck as we are i have seen that for myself and its so so sad to think about it.  

I just want to say a massive thank you to the doctors and staff Temple Street hospital and Crumlin Hospital in Dublin they were and are amazing without them and their help i would have been lost they done so much for us and they are amazing amazing people.  We just had to pay back a little to Crumlin where Kian got his treatment as they done so much for him and that is where he spent alot of his time not only that they invited him a year later to a massive Christmas party which was out of this world and i know alot of money went into it so we done a fundraiser and raise over 3,000 euro for them.  Which is only the tiniest amount of what they need for the hospital.  Thanks to all who helped with making that possible too you all know who you are :) 

If you have a childrens hospital around you please please donate to them.  They need money all the time.  Just think if you ever have children thats the first place they go if they get ill and they need all the support they can get for everything.  With that your child would not get the best treatment they can get 

I really hope this post has helped any mother out there who is or has been going through this and please please ask me any questions you have and i will be more than happy to answer.  Even though these 3 posts has alot in them that is only a small amount of what we went through and what we are going through now.  Kian still needs looking after and over his growth spurt will need new false eyes which now will cost alot of money and looking after.  He still needs alot of looking after but he is over the worst :) 

Until next time 

Look after yourselves and no matter how hard your life might seem just think of those poor people out there in the world going through worse experiences than you and be grateful for every minute of your life as every minute is precious.  
One major piece of advice i can give you is dont refuse the support you get from your family and friends or whoever will offer it YOU WILL NEED IT.  Its very easy to refuse it thinking you do not need but but in all honesty YOU DO NEED IT.  I have to say without the support we got from family and friends and of course the medical staff I dont think i would have been as strong as i was for my boy and the rest of my family.  There is nothing wrong with asking for help either and there is nothing wrong with taking the help as we are not robots we are only human at the end of the day 
Thanks so much for reading :) 

Lots of Love Luck and Laughter 

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 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