My brave boy. Warrior of langerhans cell histiocytosis.

My little boy was born on 25th February 2014. He was 10 days late and it was a very, very long delivery. But once he was here I remember feeling such overwhelming love for him. He was my blessing and gift. The best thing to ever happen to me. He still is. The first year of his life was very normal. We were adapting to the challenge of being new parents. Lewis was such a happy boy. As it was coming up to his first birthday, I remember feeling like it was all feeling normal. I had been more capable than I thought and was loving every minute with my little boy. Then at 15 months old we suddenly noticed a massive lump on his forehead above his right eye. It had no bruising. Was very pronounce and seemed to go bigger and then smaller and bigger again. I waited a week and as it wasn’t going away or looking like a bump. And I was sure he had never fallen. I took him to AnE to be looked at. We were sent from one hospital to another very late at night. The doctor I saw that first night was very rude. She kept asking me over and over what i had done every day with him. I told her everything again and again. Lewis had not fallen or banged his head or anything. She kept trying to say it was just a bump and my fault for not watching him. I definitly had watched him and he had not banged any part of his body. I finally said it’s been there a week would there be bruising if he had banged it. She said yes. To which I said there isn’t one. She fobbed me off and sent is home. I am so glad I never listened to her and just ignored it. The next day i went to my local doctors and the doctor looked at Lewis. He was very concerned about him. He had him referred to pediactrics. And so began Lewis journey into finding out the truth. A few hospital and doctors trips later and tests. And Lewis was finally sent for an m.r.i scan. This day was the worst. Only 15 month old and it took them a long while to get a canula in. Was so awful watching him scream in fear and pain. After the m.r.I we waited patiently and anxiously for the news. At first we were told Lewis may have a brain tumor. We were referred to Manchester children’s hospital straight away. I remember holding Lewis close to me and years running down my face at the thought that we might lose him. The next day we set off to Manchester. And we met Lewis wonderful consultant Dr Penn. Someone who would come to mean alot to Lewis and us. It was arranged that lewis would need to have a biopsy done. I think it was the beginning of June when this was done. Lewis screamed the place down while they were trying to get a canula in. He was put to sleep and taken to theatre. He was such a brave boy and still gave us a huge smile everyday, even though his eye was closed up and he looked very bruised from having the biopsy done for a few days. The week after, we went to see doctor penn for the results. It turned out that lewis had a rare blood cancer called langerhans cell histiocytosis. His white cells were growing too rapidly in one spot, causing the growth on his skull. It was also behind his eye socket. If left untreated, it would have continued to get bigger and would have caused problems with his pipituary gland, and possibly his eye sight. So a plan was made for Lewis to have 12 months worth of chemotherapy and steroids treatment to help fight this disease. It was such an unexpected battle to face. We never imagined that our little boy would be ill one day like this and have to go through such rough times for someone so little. Lewis had to have a portacath fitted into his body before treatment could be started. He spent a few days in hospital while he had this done. There is so much to remember. But 15 months old and Lewis begun his weekly chemotherapy. He also had steroids 3 times a day, anti sickness, antibiotics every weekend. And antacid. Medicines and medicines and hospitals and injections and lines and thumb  prick tests were his life now. His immune system became very low. And he became at risk of infections. If he had a temperature he was straight in hospital for 5 days on antibiotics. Watching Lewis have chemo was so hard. He screamed and became so anxious. And it was so upsetting watching him be so scared and upset. But through all this, he was the sweetest little boy. He would turn to the nurse’s after and say thank you. He would be all smiles and playing with the other kids. We as parents had never been hit with something so hard. We were just trying to fight and hold on but falling apart inside. And we are still dealing with effects of all the stress and trauma. Lewis was very tired during all his treatment. His appetite would be up and down and he would pick up bugs do easily, no matter how careful we were. Eventually the chemo treatment became every 3 weeks. Lewis ended up Ill and in hospital for his 2nd birthday. And the staff at the hospital were so kind and gave him a couple of presents. Time went on and eventually it was time for the treatment course to end and to see a scan. The leison they were treating was gone but there was a new one there just 1 cm big. Our heart sank. So they decided to leave him off treatment for 3 months and do another x Ray. Even though he didn’t have chemo, he still had his portacath in which needed to be flushed every month at our house. Lewis screams were awful. We were blessed by a charity called Lenox fund. And they arranged for us to go on holiday to mersea island for 7 night’s in a caravan. It was so amazing and just what we needed. A break from all hospital life and worries. On that holiday, we took Lewis to Colchester zoo. Lewis has a big love for African animals. And there he got to see elephants and rhinos and zebras and giraffes and warthogs and hyenas. All together. And his face just lit up.  He got to feed the elephants and giraffes too. Every day since then he still asks to go back. For 2 years we have been worrying so much about our little boy. We will find ourselves checking his temperature so many times in the night. When we try and watch tv at night, it will take us hours to watch one hour episode because we keep going to check on him. We carry alcohol gel everywhere and use it like it is Sun cream. We will be out and if we hear anyone coughing or sneezing,  we immediately want to take Lewis away. If someone comes up to me who knows us well and suddenly says  oh I was sick last night, I immediately want to slap them for even thinking of coming near us with a bug. In time this may pass and we may start to relax. Lewis has just turned 3 and even he has started telling me “don’t worry about me mummy” about a month or so ago Lewis had his portacath out. Then on 23rd february we took Lewis for his x Ray and to see his consultant. We got the amazing news that the lump was gone. Lewis is now in remission. He will still have check ups and scans. But hearing that for now it has gone! Was amazing! Our little warrior has finally come through it. He can start a full life. He can run around and be a boy without me panicking. Lewis got this brave bear for being brave. And he truely deserves it. He has been through so much trauma for someone so little. And yet he smiles like sunshine. He is so caring and loving. Since being off the chemo his energy has come back. And he has grown so much. We are gonna make sure that this year is a wonderful year for him. It’s time to have some fun and really live.

Motherwolf (this is my little cub)

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List of names I like for boys.

  • Alfie
  • Ben
  • Brendan
  • Caleb
  • Conner
  • Daniel
  • George
  • Jon
  • James
  • Joshua
  • Jack
  • Joseph
  • Jamie
  • Lewis
  • Liam
  • Michael
  • Oliver
  • Ryan
  • Sam
  • Simon
  • Tim
  • Thomas
  • William

And there is all boys names I like too. One of these I have already used. And he is a little sweetheart.

List of names I like for a girl.

  • Amelia
  • Aeryn
  • Abby
  • Chloe
  • Connie
  • Ellie
  • Elsa
  • Emily
  • Emma
  • Hannah
  • Hayley
  • Holly
  • Isabelle
  • Ivy
  • Jessica
  • Katie
  • Lydia
  • Lyanna
  • Mara
  • Megan
  • Penny
  • Rebekah
  • Rosie
  • Sarah
  • Samantha
  • Sophie
  • Sansa 

well these are my favourite names for girls. So many to choose from. I hope it comes in handy one day having this list. 🙂

Depression.

I know you are in there lurking around,

I saw your shadow and your constant frown.

You shouldn’t be here you hideous thing,

You’re taking over everything.

Thoughts, memories, hopes and dreams,

Are being drowned out by your haunting screams.

Stop locking the door, stop trying to hide,

I want to track you down and put you outside.

I can feel your footsteps pressing on my brain,

Trampling, eroding, will i ever be whole again?

You are a creature of darkness, pain, sorrow and dispair,

Why choose me for a home? Did you think i wouldn’t care?

You feel like oil i cant wash off, blackness under my skin,

I’d shower myself in acid, if it would kill the thing within.

You use me as a puppet, pulling strings to make me play,

Comedy or tragedy, which will i be today?

I think about calling you fred, my new imaginary friend,

But i wish you would drop dead and that would be the end.

Your creepy fingers keep grasping for my joy,

Turning it into grief for my still living boy.

Hope isn’t acceptable to you, you want me to cower at your feet,

To feel as numb as you do, for me to admit defeat.

I can feel your breath on my neck making my limbs feel like stone,

Each movement is a struggle, each struggle is mine alone.

You’ve made me into a ghost of the girl i once was,

A shell for you to inhabit, why? Just because.

Your touch is like ice trying to keep me frozen,

Death wont let me go, life is no longer golden.

You warm yourself in my anger and keep fueling the fire,

Can’t let go of the grief, keep its ugly head on a spire.

You keep pulling off the shelves bad memories, making me relive them again,

Can’t you read some happy ones? It’s like you feed off the pain.

No one knows the monster living in my head,

We all thought you as make believe that would hide under my bed.

But you monster are so real and you are now a part of me,

And when i look in the mirror it is always you i see.

I want to make you tame, put you in a cage,

If you must live inside my head, you must control your rage.

No one can know that you exist, no one can see your face,

You must stay in the shadows, keep in your place.

My fear and my dispair made you want to live with me,

But please stop opening my scars for everyone to see.

Maybe one day you will lift off this curse,

But for now you are here and maybe it could be worse.

Smile on the outside, no one can ever see,

The black and hideous monster who lives inside of me.

 

Mother Wolf.

My last week with you.

24th March Sunday 2013.

Today was like any other Sunday. I woke up happy and ready to face the day. Lazy mornings and music. Smiles and laughter through the morning. Bacon sandwiches and coffee with the man I love. The one you gave me away to at my wedding. I remember looking forward to seeing you and mum, as we packed the car as we did every Sunday and set off on our journey to have some much loved family time. With you and mum and my sisters and brother. I remember seeing daffodils peering though the snow. Little lambs in the field. And so much snow on the way. We got to your house and started up the driveway and got stuck in the snow. So I walked up the track to see you at the house. I had no worries, it was only snow. I needed a shovel and I knew you would have just the right tool so I could fix this problem. Like you had helped me learn how to fix all my problems. All I ever had to do was ask you dad and you would know a way. You were already at the door before I even knocked, waiting to greet me with a smile. You got the shovel and offered to dig us out. But I said no it’s ok we will do it. It was very cold and I didn’t want you to have to be out in it. I took to action and dug my hubby’s car out of the snow. And he parked the car. I then realised that all the track was full of snow. I didn’t want you to have to dig it all on your own. So I got to work and cleared all the snow off your drive. I felt so happy because I was able to help you for a change and look after you. You gave me such a smile of gratitude and you said I must take after you. Some of the best words I’ve ever heard you say. I take after you, my dad and if I do I feel so happy to be a reflection of who you was. The rest of the day was a normal but enjoyable family day. Talking, watching country music on tv, watching Ken dodd or morcombe and wise or Kenny Everett on tv. Laughing alot, with all my family. Enjoying mum’s delicious food. All of us sat round the table. Just as it should be. I was happy and content. Life was as it should be. I remember thinking that some day soon there would be a new grandchild sat at the table for you. My baby as that was my next plan. None of you knew of course but me and my hubby. I had always wanted you to have a relationship with my baby. I remember as it got after 9pm. You told me you were going to bed now and said goodnight pet. I gave you a hug and said goodnight dad. Nothing was a miss. Everything was right and normal. Predictable even. It had been a perfect day.

27th March Wednesday 2013.

Today was a normal work day for me. Early mornings, kissed my hubby goodbye as he left for work. I enjoyed the walk through the lovely woodlands to work. Listening to all the birds. I got the tea room all nice and clean and then started on my other jobs. Suddenly I noticed I had a missed call and a message from mum. I thought this was strange as she never calls me especially when I’m at work. So I listened to the message. My heart sank as I heard my sister say the words dad has had a heart attack and has been taken to hospital. I remember feeling so dizzy and sick. I was shaking and I walked along the cobbled courtyard to the offices where my boss would be. I got through the door, they looked at me and saw on my face that something was wrong. And asked what’s wrong? I just burst into tears and tried to make myself say I’ve just been told my dad has had a heart attack and is in hospital. They were so nice and caring. They let me ring my sister, she told me how you had collapsed on the landing and they rang an ambulance, and they had taken you to the hospital. They thought you had had a heart attack. She then told me not to worry. Being the baby of the family, i know they all wanted to look after me and shelter me from the pain. I remember someone at work telling me that they had had a heart attack before and he turned out to be ok, was looked after and out of hospital in no time. Ok i thought, i have hope. So my hubby picked me up from work and we set off straight to the hospital to see you. When i got the hospital, we had to wait in the family room. My sisters were there and my brother. My mum came in and she was crying. It was so heartbreaking to see my mum like that, i hugged her and also joined her in crying. We took it in turns to see you. I remember you being in a lot of pain, trying to fight the doctors, like you didnt know what had happened, or where you were. I had never seen you in a hospital bed before. We were told that you had pnumonia and this had caused your heart attack. We stayed with you all day and the doctors did all they could to look after you. Or thats what we thought. Eventually we had to go home and we all kissed you and gave you a hug goodbye. It was very distressing seeing you like this, but we had hope, the doctors seemed hopeful that you would be coming out in a few days or so.

28th March Thursday 2013.

As soon as we were ready and able we came straight to the hospital to see you. You seemed to be doing better today. I remember you trying to joke a little. You still needed a mask on over your face to help you breath. I remember helping mum to feed you. It felt so strange to be feeding you. But i was glad i could be there for you. My sister noticed that the nurses had not changed your catheter and it was full of blood. You were wrentching in pain. My sister was very cross about that, as she had told them a few times before about it being full. The doctors eventually sorted it out and gave you whatever medicines you needed. Finally you seemed relaxed and comfy and yourself. It was evening and we were told we had to go. I held your hand and said we have to go now dad, will you be ok? Are you comfy now? You answered “yes pet, im comfier than ive been since i came in” i thought good, the medicines must be working, you must be on the mend. I gave you a hug and a kiss and said i will be back again tomorrow dad. You looked at me with a smile and said “you’re coming back tomorrow pet?” i smiled and said yes i promise i will be coming tomorrow. I asked if we should stay, the doctors and nurses all said that you would be ok. You would be well enough to come home in few days. We should go home and get a good sleep. So that is what we did, And how much i wish i had stayed by your side and not gone home that night. We had tea at mums that night, and we all started to feel hope and relief that you were getting better, you would be coming home and things would be fine again.

29th March Friday 2013.

I remember waking up at home with my hubby. I remember smiling and laughing and feeling like a weight was lifting, you would be ok. I was looking forward to coming back to see you. Then i got a phone call and it was my brother. He told me that you had died at 8am that morning. I couldnt speak, i couldnt do anything, i gave the phone to my hubby and i burst into tears. I felt like i had been speared through the heart. I have never felt so crushed. Hearing the words that my dad had died, That you had died, you had gone, it was so wrong. No this wasnt supposed to happen, they said you were going to be coming home. They promised. They wouldnt let me stay with you, they stole my last night with you. I could have watched you and got them to save you. I should have stayed. I was in bits. It was like having a limb torn off. We made our way to the hospital, mum, sisters and brother, my niece. We all had to come and see you in the chapel of rest. I was dreading it, i didnt wanr ir to be true. The time had come to see you. We walked in and you were laid on a table, a red velvet looking blanket over you. You were just asleep, you looked like you were asleep. You were gone, i couldnt believe it. I remember crying, we all were and we all said goodbye to you. Mum kept stroking your head, she wanted me to hold your hand, but i couldnt, i was scared you would feel cold, and that wasnt you. You were warm and full of life and that was the memory i wanted. The last time i held your hand you was alive and warm. Like all the times you used to hold my hand when i was a little girl, taking me to school or the shops. It felt so surreal. It shouldnt have happened. You were one of the fittesr people i knew. My world fell apart. I remember crying so much for a long time afterward. I wasnt ready to let you go. We had to leave you there and go home. The death certificate said pnumonia, heart attack, septacemia. I couldnt help wonder if the spetacemia was from the catheter. But we will never know, at the end of the day maybe you was ready to go. Maybe you missed your mum since you lost her when you was 20. You had been through alot in your young life. But you were always the most loving, kindest dad to us. You raised us 5 kids in best way anyone could. And i will always be grateful for all you gave me and taught me. One day i will tell my little boy all about you. How i wish you could have met my little boy. I think you would be very proud of him. So i promise to be the best mum i can be to him, like you were the most wonderful dad to me. And i will cherish every day i have with him. 26 years with you went too fast. I wish you could have stayed in my life for longer. I will always miss you and i dont think i will ever heal from this scar i carry around in my heart. But the scar is linked with all the memories of you, and there couldnt be sweeter pain than that. Goodbye dad.

 

Mother Wolf.

 

Mr Ginger Cat.

Hey Mr Ginger cat,

You do make me laugh,

I’ve never seen anything so fat,

And boy do you need a bath.

Hey Mr Ginger tom,

Have you eaten many mice?

I wonder where you come from?

I hope you dont have lice.

Hey Mr Ginger kitty,

Dont you have a home?

I bet you would look pretty,

If i only had a comb.

Hey Mr Ginger kitten,

Why are your paws so mucky?

Were you fighting a dog and got bitten?

I bet you were lucky.

Hey Mr Ginger pussy,

Does nobody want you?

I suppose people can be fussy,

And you need a bath or two.

Hey Mr Ginger moggy,

I cant leave you behind,

So your fur is a little foggy,

And your smell is unkind.

Hey Mr Ginger stripes,

How about some milk?

No more sleeping in dirty pipes,

I will give you a bed of silk.

Hey My Ginger four legged friend,

No more rumaging in bins,

For on me you can depend to buy you whiskers in tins.

Hey My Ginger tabby,

I will take care of you,

From now on you will be happy,

And have plenty of baths too.

Hey My Ginger feline,

You’ll be safe with me,

Because now you are mine,

And will be spoilt as can be.

Hey My Ginger stray,

They may say you are too fat,

But i love you anyway my lovely ginger cat.

A Rainy Day.

Drip, drop, drip, drop is the sound in my head,

Snuggled and warm in my surround makes me want to stay in bed.

Gushing, slushing, wooshing, the rain keeps pouring down,

For the flowers it may be a blessing but me it makes me frown.

Splosh, splash, splish, little duckies have their fun,

I can swim like a fish but i would rather have some sun.

Big black clouds fill the sky as i look out of my window,

Maybe i would enjoy it more if i was a little minow.

I watch people getting wetter and wetter, i saw someone slip in the mud,

I’d swear i had seen an ark go by as the streets began to flood.

Rain rain go away! You are ruining my mood,

I had planned to go for a picnic and already packed the food.

Just then i saw a ray of light, a glimpse of hope it may be,

Could it be the sun coming out? I wait patiently to see.

Then just like magic the pitter patter stops, water dissapearing down the drain,

Could it be all the wishing i have done that finally stopped the rain?

Suddenly something beautiful high in the sky starts to show,

Why look at that, what a lovely sight its a colourful rainbow.

So now there’s a smile back on my face, i wont waste one moment more,

I must go outside and enjoy the day like i never have before.

So when you see a rainy day and it makes you sad and blue,

Remember the sun isn’t far away and it will always return to you.

 

Mother Wolf.

Woody the Budgie.

Cheep, cheep, cheep,

Woody says all day.

Cheep, cheep, cheep,

Woody wants to play.

Cheep, cheep, cheep,

Whatever is the matter?

Cheep, cheep, cheep,

Woody just wants to natter.

Cheep, cheep, cheep,

What is the song you sing?

Cheep, cheep, cheep,

Woody always sings when on his swing.

Cheep, cheep, cheep,

Woody says all day long,

Cheep, cheep, cheep,

We know there’s nothing wrong.

Cheep, cheep, cheep,

Woody says when there is sunlight,

Cheep, cheep no more,

Woody wants to say goodnight.

 

Mother Wolf.

Reasons why i love you.

You always make me happy when i am feeling down,

You always make me laugh, you are my very own clown.

You put up with my snoring and screaming when i see a bug,

You look after me when i am ill and give me a big hug.

You are always so kind to others and easy to talk to,

And just like the birds i want to be close to you.

I love the way you smile at me when you are thinking something cheeky,

And how at times you can be so sneaky.

I love the way you get excited about your mini,

Even though to me it is only a car thingy.

I love spending time with you no matter where we are,

Because with you is my heaven and you are my special star.

You will always be my superman, my knight in shinning armour,

Because with you i always feel safe and have never been calmer.

My heart belongs ro you and there it will always stay,

Because you are my bestest friend and it will always be that way.

I love everything about you all the things you say and do,

But mostly i love you just for being you!

 

Mother Wolf.

Welcome to Mother wolf’s cave.

This is very new to me. I have decide to start this blog because i love writing, whether it be stories, poems, thoughts and feelings, lists or planners. I normally like the feel of holding a pen and writing the words on paper, but i thought why not try it this way. Already i am loving the sound of the typing of keys and seeing the words appear on screen as i think them. I have had quite a few things happen in my life over the past years that i have had no control over, this has effected me in so many ways. I will share more about the events in time. But for now this is going to be my cave of secrets. My place of expression and where my imagination and feelings can roam free. This will be my moon so to speak that i can howl to, and anyone who should stumble across my cave of blogs will hear the howl. I cant promise i will be any good at this, ive never really shared my stories and poems before, especially not on something like this. I suffer from grief, depression and anxiety. I feel this will help me to channel my feelings and cope. Hope you enjoy what you read.

Mother wolf.