August 28, 2017

It is only now, with the wonderful gift of hindsight that I realise that we spent a good portion of the last two years in a kind of shock and disbelief at what happened to you.  I never thought it was possible.  I never dreamed or dared to imagine that our child, our baby, could be so seriously ill.

Two years since surgery, my how time flies.  It has the ability to make you gloss over every. little. detail but we still remember…possibly things we wish we could forget.  Actually no, we don’t want to forget, as without every little thing that happened, we would not be here today, here in Portugal, living a completely different life than we were two years ago.

Two years since surgery.  We had no idea of the outcome, we clung onto the only 2-3% chance of death with this type of operation.  We tried to ignore the fact that you were already in a very small percentage of babies who were seriously ill and needed life-saving surgery because you had a tumour.  You looked so very well, so smiley and full of life but you weren’t, the tumour was slowly but surely taking control; squishing your tiny body’s major organs, making you gasp and rasp for breath, making your heart work twice as fast as normal, making you gradually fall off the percentile charts for height and weight.  The tumour was a parasite, doing a very, very good job of slowing but surely killing you.  Whatever type of tumour you had, because even after all the tests, procedures and biopsies they were still unsure, the tumour you had was rare. Making you so very different.  We hoped that this is where this particular type of uniqueness ended and longed for a ‘normal’ eleven month old baby boy.

We used to call Friday’s bombshell Fridays, because we were always delivered a new piece of news from our group of Doctors at Alder Hey.  It’s a tumour in the heart…no it’s not…it could be cancer…it’s probably not cancer…we need to put a permanent line ine…no we don’t…we think it’s a…insert any random fact here…  So when we woke on the proposed Friday morning of the operation we were expecting to be told that the Op was off due to a major emergency, but no, it went ahead. I walked you down to theatre in your colourful gown and said goodbye to you in the anaesthetic room. You were surrounded by a huge number of medical staff, people who were going to save your life. It was so difficult to leave you there, not knowing how long the operation would be, not knowing what would happen, only knowing the operation needed to happen and you were in the best possible hands to pull you through.

The surgeon, who is indeed a real life superhero had told us the night before during our pre-op briefing that he was expecting the operation to only take two hours, if, IF the tumour was easy to remove. If it was more complex, it would take longer. So we waited. My Mum and eldest brother arrived to take Chaos back with them and keep him busy, jumping on the sofa with his cousins. We did not want him to see you after the operation, thank goodness for Grandma. It made the waiting less tedious but we still waited for what seemed to be a lifetime, for much, much longer than the wished for two hours. Finally five and a half hours later we got to see you. The operation had been long because it was much more complex than they anticipated. What they thought was an easily removable small tumour on top of the heart, was in fact a huge 10 x 15cm tumour that was everywhere, attached to everything, through the walls of the heart and pretty darn invasive.

The medical team said it was an operation of a lifetime, such a huge tumour the likes of which they would probably never see again, I hope not for the next patient’s sake. Our amazing sense of relief that you were through the op was unmeasurable but, there always seems to be a but doesn’t there, we were so very anxious that you would react badly to the drugs, wires and our first ever night apart as you were recovering and still under the effects of the anaesthetic. You did have a small itchy reaction to the pain medication but that was quickly fixed and our fears were abated once you finally came to and gave us your  classic Mayhem smile.

First Smile after coming around from anesthetic, day after your operation, Alder Hey Hopsital, Liverpool

It was the hardest and scariest day of both of our lives, but also one of the best because the surgeons managed to fix you. They managed to fully remove the tumour, a painstakingly long operation by such wonderfully skilled professionals, thank goodness, they saved you!

In the two years since surgery we have had numerous check-ups, loads more bombshells and you have had oh so many blood tests and procedures, in the UK, in Portugal and in Spain, you have had some fantastic aftercare. Your zipper scar and biopsy and lumber puncture scars have healed. Your scars have evolved from the raw gaping wound and angry red scar to a silvery grey. We play a game when we zip up your tummy and chest on top of your scar and then tickle you. It feels important that you should be proud of your scars and know where they came from, that you a fighter and a survivor.

We have been oh so very scared, on oh so many occasions, about your wellbeing and your future, about the tumour regrowing, because it could, but you’re here and you’re well. Better than that, you’re doing so well that your heart has now fully recovered and is functioning 100% perfectly after being oh so squished and so is everything else. Our last plethora of tests in Spain came back ‘normal’, you really do have to love that word when it comes to health!

Two years since surgery and you’re normal!

Mayhem Such a Smiler!

Love Forever Mummy & Daddy xxxx


40 Replies to “Two Years Since Surgery”

  1. Yay to normal! I am so pleased that little Mayhem has made such fabulous progress and all is well now. How amazing are these medics and surgeons? This is a heartfelt post that your youngest will love to read in a few years. I love that how you are helping him approach his scars too. Much love to you all at this emotional time xx #ablogginggoodtime
    Hayley@ Mission: Mindfulness recently posted…5 Mindfulness-based Tips to Prepare Your Child for the 1st Day at Secondary SchoolMy Profile

  2. What an amazing story! Am so glad to read the word ‘normal’. Can’t imagine the worry that descends with a little one in surgery, you are so strong! #ablogginggoodtime

  3. thesatsesh oh please keep linking with us, its a joy to read this lovely blog. Congrats to the little dude for turning things around, I hope he can indeed be proud of his scars and grows to be a huge warrior, or perhaps work in medicine 🙂

    1. Ah thank you for your lovely comment and for hosting. He will definitely be proud of his scars because he is such an awesome warrior, he has a little doctors bag and medicine that he carries around, loves it…you never know!

  4. I had to read this through my fingers – my own daughter had major surgery when she was a tiny baby (we were told it would be 6 hours and it ended up being 9, although thankfully she was an only child at the time so we didn’t have to worry about keeping her sister entertained at the same time). It was almost 7 years ago but I still find it traumatic to remember, and there are still ops and procedures to come.

    What you went through sounds awful, and what a fighter to have a tumour that size and still come around with a smile! I’m so glad you’ve finally reached “normal” – what a truly wonderful word that is! #ablogginggoodtime
    Lucy At Home recently posted…Rainy Days: Four Toys from What2Buy4KidsMy Profile

    1. Oh no, 9 hours is such a long surgery you must have been through such an awful time. I hope the future surgeries and procedures go well and your daughter doesn’t have to go through too much pain. It really is so very difficult for us parents to consider our babies being so ill and not being able to do anything about it but be there and be as supportive as possible. Good luck on your journey xx

  5. Oh you really have been through so much as a family but this is such a positive post and I love his gorgeous smiley photo at the end! Good luck on your journey. I have really enjoyed reading about your adventures and have been lost in your blog for over a Hour! Thankyou. #bloggerclubuk

    1. Oh thank you for your lovely feedback, we’re so lucky to have come out of his whole childhood illness being able to be so positive because we have our amazing boy happy and healthy. We are very, very grateful!

  6. Oh my, this has had me welling up! Our babies are so precious and to think of them going through all that breaks my heart but so so happy to hear that you’ve all had the happy outcome and see Mayhem smiling such a gorgeous smile x

  7. Oh god major lump in throat. I have said it before and I’ll say it again, it must have just been so very hard and so so scary. I think it takes us parents a really long time to heal from things like this and after two years although your little ones scars may be faded yours often run deep. It took me a long to get over the difficulties my son endured as a premie and they were nothing compared to what you have gone through. Here’s to normal, happy and healthy! Xx thanks for joining us at #familufun

    1. Ah thanks so much, it’s very true, it is hard for us to get over nearly losing our babies, having a premie must have been so scary. I still think about it daily, but hopefully more positively as I marvel at how wonderful Mayhem is and how much he develops and grows each day!

  8. Such a heartwarming story. I love the game you play with his scar. I’m all for being proud of your scars. As someone who underwent major surgery in my teens I have a large scar that I will always be proud of. It’s the reason I am here how I am and who I am.

    Thanks for linking up to #KCACOLS Come back soon.
    Cassie Parish recently posted…Mummy’s first day at preschool. My Profile

    1. Thank you Cassie, such true words. When Mayhem went through surgery I asked the surgeon to take pictures of his tumour. We have a couple of very scary photos of him on the operating table and of his tumour but as you said, it’s part of him and the reason he is here now and I felt he should know everything when he is older. So pleased you are proud of your scar too!

  9. I can’t imagine how awful and frightening this all must have been. I’m so happy to read that word ‘normal’. Thanks for linking up to #TriumphantTales, hope to see you again next week! 🙂

  10. can’t even imagine how hard it must have been to have gone through what is no doubt every parent’s nightmare. So happy for you to have had a happy ending to your story. best wishes going forward #KCACOLS

  11. Oh my goodness, I can’t imagine how frightening this was for you and your entire family. Thank goodness the entire tumour was removed and your precious little man is normal and healthy today! Thank you for sharing with us at #BloggerClubUK

  12. There’s nothing more heart wrenching than seeing children in hospital beds, and I just can’t even imagine how much worse it must be to watch your own child go through it. I’m so pleased to know that everything is now looking so positive for you all – your medical team sound wonderful. No-one could deny he’s a little fighter! Thank you so much for joining us at #SharingtheBlogLove

  13. Oh my goodness, this sounds like such a difficult thing for you all to go through. .I can only imagine how hard it must have been on you all. I’m so glad to read that all the latest tests came back normal and that lite man is doing well xx #thesatsesh

  14. I’ve never loved the word ‘normal’ more. What a beautiful post and what a fighter you have on your hands. I’ve loved following your story and your travels and to read this today is wonderful. I can’t imagine what it must have been like for you and I hope that this now brings you some comfort. Thank you for joining us at #SharingtheBlogLove

  15. What a beautifully written blog post. I can’t imagine what you guys have been through as a family. I hope the road ahead is full of love and happiness which I’m sure it will be. #SharingtheBlogLove

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