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

Two Years Since Surgery

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

Post Author: Topsy Turvy Tribe

Paul & Andrea ex-pats escaping the rat race with Chaos (aged 4) and Mayhem (aged 2) along for the adventure.

40 thoughts on “Two Years Since Surgery

    Hayley@ Mission: Mindfulness

    (August 31, 2017 - 11:14 pm)

    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

      Topsy Turvy Tribe

      (September 8, 2017 - 3:41 pm)

      Aah, thank you Hayley. Mayhem is such an amazing boy we are so very proud of him, it’s amazing to see how much he changes daily and we eel so very lucky that he is now healthy.

    Imperfect Mum

    (September 1, 2017 - 1:26 pm)

    Oh thank goodness for that little word normal what an amazing word to hear! Thank you for sharing your inspiring story with us on #ablogginggoodtime 🎉
    Imperfect Mum recently posted…Best of #ablogginggoodtime July & AugustMy Profile

      Topsy Turvy Tribe

      (September 8, 2017 - 3:39 pm)

      Thank you for hosting and for commenting, we are a very lucky family and if this situation has taught us anything it’s to really appreciate our family time together.

    Alana - Burnished Chaos

    (September 2, 2017 - 7:54 am)

    I can’t even begin to imagine how hard that was to go through but the life you have created since that day has been incredible and a huge inspiration for so many people who follow your story on here and on social media x
    #Ablogginggoodtime
    Alana – Burnished Chaos recently posted…Monthly Bucket List: September 2017My Profile

      Topsy Turvy Tribe

      (September 8, 2017 - 3:38 pm)

      Aaah thank you so much Alana. It really was a life changer and we hope that we made an awful situation into a wonderful future x

    Lucy

    (September 3, 2017 - 2:21 am)

    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

      Topsy Turvy Tribe

      (September 8, 2017 - 3:37 pm)

      Thanks Lucy, it’s amazing how much in shock you are when your little one is ill, you just get through it and be there for them as best you can. We are very lucky our boys are now both healthy!

    Kimberley | Oh Just My Little Blog

    (September 3, 2017 - 1:01 pm)

    Hooray for normal! What a lot to have to go through x #KCACOLS
    Kimberley | Oh Just My Little Blog recently posted…How to Grow a Baby, Chocolate Chip Cookies and a Backpack #LittleLovesMy Profile

      Topsy Turvy Tribe

      (September 8, 2017 - 3:35 pm)

      Thank you Kimberley, it’s such a lovely word isn’t it. Yeah for normal!

    fridgesays

    (September 4, 2017 - 8:50 pm)

    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 🙂

      Topsy Turvy Tribe

      (September 8, 2017 - 3:23 pm)

      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!

    Lucy At Home

    (September 5, 2017 - 8:39 am)

    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

      Topsy Turvy Tribe

      (September 8, 2017 - 3:22 pm)

      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

    Oldhouseintheshires

    (September 6, 2017 - 9:26 am)

    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

      Topsy Turvy Tribe

      (September 8, 2017 - 3:18 pm)

      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!

    Helen @Talking_Mums

    (September 6, 2017 - 2:43 pm)

    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
    #TriumphantTales

      Topsy Turvy Tribe

      (September 8, 2017 - 3:15 pm)

      Thank you Helen, he really has come out of the worst of it and grown into such a cheeky chappy 🙂

    Tammymum

    (September 6, 2017 - 6:03 pm)

    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

      Topsy Turvy Tribe

      (September 8, 2017 - 3:15 pm)

      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!

    Cassie Parish

    (September 7, 2017 - 3:47 pm)

    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

      Topsy Turvy Tribe

      (September 8, 2017 - 3:12 pm)

      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!

    Jaki

    (September 7, 2017 - 11:29 pm)

    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! 🙂

      Topsy Turvy Tribe

      (September 8, 2017 - 3:07 pm)

      Thanks Jaki, ‘normal’ really was the best word we could hear. Yeah!

    jeremy@thirstydaddy

    (September 8, 2017 - 5:12 am)

    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

      Topsy Turvy Tribe

      (September 8, 2017 - 3:06 pm)

      Thanks Jeremy, we really do feel so very lucky that he is now well and count our blessings every day!

    Becky, Cuddle Fairy

    (September 8, 2017 - 12:27 pm)

    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

      Topsy Turvy Tribe

      (September 8, 2017 - 3:05 pm)

      Thank you Becky, we consider ourselves very lucky to be able to celebrate successful surgery!

    Amy

    (September 8, 2017 - 8:00 pm)

    I’m so glad that there is a happy ending and he is so well. I love that you make his scar special, my daughter has a birth mark on her face and we say she was kissed by an angel, she tells everyone and is proud of it they shouldn’t hide a part of them! #kcacols
    Amy recently posted…Flawless Flooring Choices For Each Room In The HouseMy Profile

    Katy - Hot Pink Wellingtons

    (September 8, 2017 - 10:33 pm)

    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

    wendy

    (September 9, 2017 - 9:44 am)

    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

    Musings of a tired mummy...zzz...

    (September 9, 2017 - 8:59 pm)

    Despite your eloquent words, I can’t imagine how terrible this has all been for you and I am so relieved that things have had a positive outcome. #kcacols

    Chloe

    (September 10, 2017 - 7:52 pm)

    Gosh what a tough time you have been throgh as a family, what a beautiful smile in the last picture #sharingthebloglove
    Chloe recently posted…Review of Tesco’s Free From Garlic BaguetteMy Profile

    Bread // Queer Little Family

    (September 10, 2017 - 10:30 pm)

    I can’t imagine how scary thta must’ve been but you’ve all come a long way and he looks like a happy little chap. #kcacols

    Laura - Dear Bear and Beany

    (September 12, 2017 - 10:43 am)

    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

      Topsy Turvy Tribe

      (September 23, 2017 - 7:40 pm)

      Thank you Laura, we really are so very, very grateful that he’s now normal. It really is such a relief and we feel like we can breathe again!

    The Rhyming Mum

    (September 16, 2017 - 10:38 am)

    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

    Helena

    (September 16, 2017 - 5:25 pm)

    I’m so pleased to hear that after all the surgery at such a young age your son is fit and healthy. #SharingtheBlogLove

      Topsy Turvy Tribe

      (September 23, 2017 - 7:38 pm)

      Thank you so much Helena, we really do feel very lucky.

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