August 28, 2016

Dear Mayhem, our 22 month old gorgeous boy,

I sometimes catch myself looking at you in wonder and awe.  Everything you have been through, everything you have overcome.  It has been a year now, a whole year where you have grown, improved, surpassed all of our expectations and have been well…Better than well, you’ve thrown yourself into life head first.  A year ago today, you had just turned 11 months old and were scheduled to have life saving surgery to remove the evil mass that was consuming you.

When you were born, we’d had a bit of a hard time breastfeeding because you had a tongue tie, but so had your older brother, Chaos, so we expected it and knew about it.  What we didn’t expect, and hated to see, was you being so uncomfortable.  You were always a little bit sick after a feed, which was fine, but then you started to struggle after feeding, crying and squirming in pain.  It was as though you needed to burp but couldn’t.  Reflux medication didn’t seem to help so we sent to see a Paediatrician.  We first saw him when you were six weeks old.  He asked, ‘what would you like to get out of this meeting’, I said ‘I’d like to find out what’s wrong with my baby, to stop him being in pain’.  It was such a long journey before that happened.

We visited our local GP, the Paediatrician and A&E numerous times over the following months.  You were prescribed Ranitidine and infant Gaviscon, for your ‘reflux’.  Montelukast and two different types of inhalers for breathing problems, and lots and lots of steroids and nebulisers.  Your ‘reflux’ took second place as you began suffering from ‘croup, bronchiolitis and breathing problems‘, we became regular visitors to A&E as your breathing problems got worse.  You had nights when you woke up screaming and screaming for hours until you collapsed from exhaustion.  Nothing worked.  I was told to wean you early as you’d be better on solids (I didn’t), that you could be milk protein or lactose intolerant (we both went dairy free for 6 weeks) and that we weren’t feeding you enough (you breastfed constantly and ate tonnes of food by the fistful).  Your weight dropped form the 70th percentile at birth, to the 5th percentile.

We saw the same doctors, again and again at our local hospital in Kent.  We told them that something was wrong, insisted they look into it, but again and again but we were told that it was definitely all down to the bronchiolitis, your immune system was low and you were susceptible.  You were given more and more medication and sent home.

During the summer holidays we visited my mum in  Lancashire.  I popped into the local NHS walk-in clinic as your breathing was still bothering me, even though you’d been discharged from hospital in Kent only a few days before.  We ended up being taken by emergency ambulance to Royal Blackburn Hospital.  Your breathing and heart rate were twice what they should be.  Luckily RBH had a policy where they wouldn’t release you until you were 24hours off oxygen, so we had to stay in.  It was there that we finally met the right Doctor.  An angel, your first saviour.  A Doctor who agreed with us when we told her that there was something seriously wrong, that it wasn’t just bronchiolitis.  A Doctor that ordered blood tests, repeat x-rays and echo and finally sent you for an ECG at Alder Hey Children’s Hospital.  A Doctor that helped us finally, finally, find out why you were so ill.

We spent over a month in Alder Hey before your surgery.  Luckily we could all stay together as a family.  Daddy and Chaos stayed in Ronald McDonald House 2 minutes walk away from our ward.  As a non meat eater I’d never been as grateful to that crazy clown, hamburgler  and the golden arches as I was then.  I stayed with you, snuggled you up tight and co-slept with you on the Cardiology ward.  We had always co-slept, you fed so often that it was the only way I could stay sane.  There was no way I was leaving you now.

Surgery One year ago today

We knew you had a tumour but what type?  Until the doctors knew what type of tumour you had they wouldn’t know whether or not to operate or use chemotherapy.  The big C raised it’s ugly head and it was so unbelievably scary!  You looked like a bruised pin cushion; so many bloods taken, more x-rays, ECG’s and Echos, a CT scan and a biopsy of the tumour.  We had to leave you with strangers.  For the first time ever, we were apart.  I think it hit us then, a huge wave of emotion, panic and despair.  We had spent so long knowing you were ill and pushing for answers, that we hadn’t really had the chance to reflect on the fact that you were so very, very ill.

You took it all in your stride, you were so happy and smiling so many nurses and doctors said you were the highlight of their days.  Always happy to see a new visitor, you tired to entertain whoever came through the door of our little cubicle.  Whilst we waited, and waited for the biopsy results we tired to keep things as normal as possible for you and your older brother.  As you only needed oxygen during the night we were free to roam during the day and had some lovely family days out.  We were about to head out to the Albert Docks in Liverpool when we were told that Oncology wanted to see you to take some more bloods.  The junior doctor who was taking bloods casually mentioned that they would need to check the bloods for clotting ready for your operation tomorrow!

The doctors still didn’t know what type of tumour you had, as the biopsy results were inconclusive, but they suspected it was a benign Thymoma so had decided to operate!  You went in for surgery.  Your surgeon was a superhero, he was amazing.  He had forewarned us that the operation should take around two hours, unless it was complicated, then it would take longer.  Luckily your Uncles and amazing Grandma were nearby for support.  Uncle Paul and Grandma came to Ronald McDonald house to pick Chaos up and look after him so we could spend time with you in the Intensive Care Unit.

We waited and waited…it was the worst time of our lives waiting to see you, waiting to see if you had made it through, if they had managed to remove all of the tumour…Over five hours later we got the call that you were finally out of surgery.

The CT scan results showed that the tumour was 5 x 6 cm.  In reality it was 15 x 10 cm.  Humungous.  This monstrous tumour, this group of crazy cells, that was consuming your tiny body.  It was attached everywhere, through your pericardium, to your aorta, lungs, trachea…everywhere.  Your little heart had been so pushed out of shape by this huge tumour that it ended up down near your tummy.  Your superhero surgeon said that it was ‘spectacular’, your amazing anaesthesiologist said that it was ‘once in a career to see something like this’.  It was a miracle you kept going as long as you had but you did…You made it.  They got it all.  We could breathe again.

Your recovery in ICU was also spectacular.  I pumped, survival instincts kicked in, your eyes opened and you reached for your first ever bottle!  We left ICU after two days, back to the comfort of our cubicle and Chaos came back from Grandma’s.  We also heard the best ever news, finally, the tumour was a Teratoma and was benign…You didn’t have cancer!

Surgery...One year ago today

A week or so later we were allowed to leave the hospital…freedom!  It was strange being back on the outside but oh so wonderful.  We were surrounded by my wonderful family and you had your brother and cousins to help you get better…they say laughter is the best medicine!  Now that the tumour was gone you had so much more energy and started to really ‘do’ things.  For the first time in a very long time you breathed easily, your cough was gone, you sat up without face planting and even started to cruise!  Four new teeth followed the two that came during our hospital stay and you started to make lots of new sounds, babbling again instead of grunting!  We relished every single glorious minute!

Your Daddy and I had delayed our starts back working at our school and college until half term, to be there to care for you…but to even think about leaving you to go back to work made our hearts break.  We celebrated your first birthday and knew something had to change in our lives.  After everything that had happened, there was no way that we could leave you.  To see you so close to the edge, fighting to live.  Our safe little world had been turned topsy turvy by this terrible tumour and life would never be the same again.

So we decided to do it, quit the rat race, our jobs, our flats and blow our savings to be with you and your brother.  We packed our bags and our Bongo (campervan) and hit the road.  We arranged to  housesit in central Portugal.  During our time there you learned how to walk, using the side table as a walker, at the same time you began talking, your first word was ‘Dada’ (he was so happy), so amazing to hear your little voice!  We were there by your side to see each milestone, each achievement.  Thankful, oh so grateful, that you are well and still here with us.

We hope beyond hope that you don’t get ill again, there’s a small possibility the tumour could regrow.  We’ve had lots of follow up hospital appointments, the doctors at Coimbra University Hospital in Portugal were equally as careful and fantastic as in the UK.  We’ve been thrown a few curve balls but you keep passing all of the tests and getting the all clear.

Now we are housesitting in Spain, enjoying travelling, exploring, cooking, blogging and loving our family time together, relishing every single moment…yes even the tantrums and fights with your brother, the constant picking up of your toys and upset at scrapes and banged heads; because you’re here, you’re here with us by your side.

We are so proud of you.

Lots of love forever

Mummy, Daddy & Chaos x x x x

Mayhem at 22 months
You at 22 months old, rockin’ your zipper scar
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92 Comments

92 Replies to “A year ago today…Surgery”

  1. Oh my, you had me in tears as I read this, what a just awful time you must have had. But wow that hospital who took you seriously and how they helped you. I am so glad your little one is doing so well and your all looking so happy. Must have been a very hard write but thank you for sharing #sundaybest

  2. Oh you made me cry as I read this. You have been through so much and he is such a little trooper! Can’t wait to read more about your family adventures abroad. Xx #sundaybest

  3. Oh my goodness, your little boy is just amazing. What a little hero and fighter to come through that, bless him. I’m so so glad you happened to go to RBH and you saw that one doctor. I’ve been there once and they are amazing. Your little boy is beautiful xx

    1. Thank you! Sorry to hear that you were in Birmingham RMHC. I know a few people who have really benefited from RMHC, they really are fabulous! We would not have been able to afford to stay together if it wasn’t for their fantastic charity!

  4. Oh my what a life Changing experience for you guys literally! Having kids is a life changer but you’ve gone one step further and changed your whole life! But reading this shows that’s it’s totally worth it! #bigpinklink

  5. Wow, just wow. What a story. I had no idea you’d been through all this. I absolutely love looking at your photos on instagram and now they will mean so much more, knowing what that gorgeous boy of yours has been through. Thanks for linking with us. #bigpinklink

  6. I can only imagine how hard that time was for you but I am so happy to read a happy ending and what sounds like an amazing decision for you and your family #twinklytuesday

  7. Oh my goodness what a story. I am sat here with tears in my eyes, I can only imagine the journey you must all gone through. Your little boy is amazing to have been so poorly and kept on and what a quick recovery period that truly fantastic. I’m so pleased the story has such a lovely ending and what a great thing you have done by moving. I am in such awe of you all. Thanks for sharing xx #marvmondays

    1. Thank you for your lovely comment Sarah. Mayhem is such an amazing boy and such a trooper and so is his brother Chaos, who’s life was totally disrupted by us spending so long in hospital. Even though it was such bad luck for him to be so ill, we consider ourselves so amazingly lucky to have come through it all together!

  8. Such a journey and so emotional! I was hooked. I’m so glad you met that one doctor who trusted your instincts and started everything rolling to fix your precious boy! #dreamteam

  9. Oh my word, what an experience! I too would be proud. Then again, you should be proud of yourselves. That must have been such a demanding time. May you never experience something like this again. #BrilliantBlogPosts

  10. This is such an emotional post, I’m filling up here!! So pleased to hear Mayhem is doing well & you’re enjoying life as a family on a fab’ adventure!! Keep loving it!! #DreamTeam

  11. I got really emotional reading this post. Your boy is so sweet, a lovely little hero. And you must have been incredibly brave, I truly admire you. The end of your story made me smile. I’m so happy you have gone through this and feel good in Spain now. 🙂 xxx #SharingtheBlogLove

  12. You had me in tears. Such a beautifully written emotional post. I felt every word you wrote. What a brave little boy and thank goodness you went to stay with your mum and met that doctor. It’s shocking that it took that for someone to listen to you. I’m so pleased your little boy is doing so well and your adventures sound amazing. Enjoy every minute X

  13. Oh my goodness! What a terrible time you have all been through! I cannot even imagine how stressful it has all been. To have your instincts ignored for so long is awful. I’m really pleased Mayhem is ok and you are enjoying some seriously well deserved family time together.
    #SharingtheBlogLove

  14. Wow, what an incredible story – you’ve got me bawling here reading this. I can’t imagine how incredibly hard this must’ve been for you. I’m so pleased to hear that your little Mayhem is doing so well now. And what an inspiration you are packing it all in and realising what you actually want from life now. Cherish every minute, good for you xx #bestandworst

  15. What an lovely story with a beautiful ending… I can’t imagine how you went through that time, it was worrying and scary I think. I’m glad your little Mayhem is doing well and hopefully he’ll continue as healthy as ever. #PicknMix

  16. Wow, what a little superstar, to have gone through so much already so young and still keep smiling. You must be immensely proud of him. You’ve all been through hell and come out the other side stronger, I bet packing in the rat race was the best decision you ever made. I’m going to go hug my kids now x
    #Brillblogposts #SharingtheBlogLove #ablogginggoodtime #BloggerClubUK

  17. What a read, and what a little superstar you have! I’m not going to lie, I have some tears streaming down my face right now, I love a happy ending! I can’t imagine what it’s like to go through something like this, and you must be so relieved that you visited a different hospital and got picked up by someone who recognised there was a problem. This is such an inspirational read, thanks so much for sharing it with us at #SharingtheBlogLove

    1. Thanks Katy, sorry for making you cry…It was quite an emotional post for me to write too. We are so very thankful for the amazing doctors he saw. We wrote and thanked the one doctor who made the difference and told her how amazing she was for saving our son’s life!

  18. Oh my goodness!! Pass the tissues…What an amazing family you are. Your poor little boy. I am so happy you finally found the right doctors (although very upset that your concerns were not investigated more thoroughly to start with). I love that you have quit your jobs…family time is so precious and we should make the most of it. Your boy will really appreciate reading this when he’s old enough. Thanks for sharing. #thelist

  19. It’s so amazing that he’s (and all of you) have been through all that and everything is all good now. It’s hard to believe such a massive tumour was concealed in such a tiny little human! Very emotional post, even though I knew it was one year on and everything was alright, it was still an emotional read!
    #ABloggingGoodTime

    1. Thank you! We actually asked his surgeon to take photos of the tumour during the operation. The size of it was unbelievable, like you said, to think that huge mass was inside of him was totally crazy…the human body really is phenomenal to survive that but thank goodness he did!

  20. Oh my, you’ve been through such a lot as a family – Your positivity and love is just pouring out of your writing. What a wonderful post to remember all you’ve been through and how far you’ve come. Thanks so much for linking up to #dreamteam Hope to see you next time x

  21. Wow an amazing story, you have certainly been through a lot. I hope you turkey enjoy your travelling and exploring #KCACILS

  22. What an incredible story, you’ve all been through such a lot and you sound so strong. That’s an awesome scar, he can have fun telling people where he got it (I used to tell people in school that I got mine when a shark nearly bit me in half) #KCACOLS x

  23. Oh my goodness, what a terrifying journey for you all. I am so glad your outcome was a happy one, what a little trouper you have there!! Beautiful. Thanks for joining us at #SundayBest, hope to see you again this week! x

  24. In tears reading your post! So heartfelt a truely inspirational story! As a mother I can’t imagine what you Must’ve gone through! Such a little warrior you have. That’s so amazing that you decided to travel and make memories. Life really is too short. Enjoy every moment with your beautiful family lots of love x #KCACOLS

  25. Oh wow, I can’t believe what you’ve all been through, so inspiring. My heart aches thinking about the stress you must’ve gone through, I could barely cope with normal illnesses when my son was little, let alone having to think about recurrent breathing problems and a tumour. What an amazing decision you guys made to travel and make the most of life. Thanks for linking up to #MarvMondays. Kaye xo

  26. Oh my goodness this made me feel very emotional. It just shows that you should never ignore a mothers instinct. So so scary, you brave Mama but I’m so happy that he is well and thriving. What a brave little man. I hope you enjoy your time together in Spain – can’t blame you for making a big change like that. Family time is everything isn’t it. Best of luck for the future and thanks for joining us on #fortheloveofBLOG

  27. Thank you for sharing such an incredible journey – so brutally honest and just beautiful. I am so glad your little one was okay. As a lifelong veggie myself I’d probably have hugged Ronald Mcdonald and his golden arches too!!
    Thanks for linking to #ablogginggoodtime

  28. Oh my goodness, what a scary, scary time for you all. So glad that Mayhem didn’t have the big C and that the doctors managed to successfully remove the tumour. Things like this really do make you re-evaluate what’s important in life. Glad to hear that you are making the most of the time with your boys and enjoying life now 🙂 #ablogginggoodtime

  29. Oh wow what an amazing story, I had goosebumps reading it. You definitely have a special little boy who is lucky to have you. I love that you decided to change your life too! Love it! Thanks for linking to #picknmix

  30. That must have the scariest, most heartwrenching experience. I’m so glad you’ve come out of it okay and that it sounds like it’s spurred you to make exciting changes to your life. I hope your little one stays healthy now. #kcacols

  31. Oh my word this must have been awful, but what a strong little fighter you have on your hands! I’m picking this post as this weeks favourite! Thanks for linking up to #PicknMix, hope to see you there again tomorrow

    Stevie x

  32. I’m so glad all ended well- what a trauma your family went through and what a strong little boy! Hopefully you can move on and leave all of that behind and as he was so young, the trauma of it all won’t effect him. Hugs xx #KCACOLS

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