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Calvin's Pneumococcal Meningitis Journey

  • Happy New Year from Sam, Megan and Calvin

      3 January 2023
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    Happy New Years everyone - an update from Sam below.

    "Well 2022 was a very challenging year that will never be forgotten. A lingering global pandemic, friends passing far too early and our Calvin contracting pneumococcal meningitis.

    Whilst I could dwell on all the negatives, I sit here grateful that Calvin is still with us and is fighting hard and proving a lot of doctors wrong. He is a toughie and whilst we still have huge challenges and uncertainty ahead, we are at least able to smile, laugh, cry,  kiss him before he goes to bed and when he wakes up in the morning.

    The biggest kick in the teeth from all this is that the Pneumococcal Meningitis that he contracted was completely avoidable. In 2016 Pharmac cut funding for the PVC13 vaccine and replaced it with the PVC10 which Calvin (and any other baby since then) recieved during his immunisations. This was staunchly opposed by many doctors but Pharmac still decided changed it to save money. The meningitis strain that Calvin contracted was one of the 3 strains this newly adopted PVC10 vaccine did not protect against.

    To further rub salt in the wound Pharmac decided to reinstate the PVC13 vaccine a mere 7 days after Calvin contracted it because there has been "a surge in deadly cases".

    So if I can urge on thing to parents of young children and future parents.. please, please, please get the PVC13 vaccine. We don't want anyone to go through even a fraction of what we have had to.

    It is free and available from your local GP. It is highly effective and proven to prevent this horrible disease. A 30 minute trip to the doctors is all it takes. We didn't have the option, but you do.

    To anyone who donated to the Givealittle we can't thank you enough. The money is all going towards physio/occupational therapy to compliment the very limited amount we recieve from public Healthcare (don't get me started on this!)

    And to those who visited, cooked us meals, sent a message and everything in between; it has meant more to us than words can express."

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  • Calvin Update #3 - Calvin Turns ONE! 12/12/2022

      12 December 2022
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    We have some big news in this update!

    Calvin celebrated his first birthday on Saturday 10 Dec - and the best gift of all, he got to go home!

    Megans beautiful birthday message to Calvin below:

    "A year ago today when I first held you in my arms I thought to myself, “If anything ever happens to you, I would be destroyed.” I never thought we would spend a week in agony bracing ourselves for a life without you, not knowing if that day or that hour would be your last. We comforted ourselves by acknowledging that all you’d ever known in your life was love. You had never been scolded or punished or ignored. You were adored by everyone who met you, and you knew it.

    Over the last six weeks you’ve proven time and time again just how strong and driven you are. The doctors who gave you the most dire of outlooks have had to hide their surprise when they see you stroll by. We have no doubt you’ll face your new challenges over the next few months and years with the same sense of grit and determination.

    You leave the hospital today as a big one-year-old the same way you did as a tiny one-day-old: your cheeks cushioned gently in your car seat, your parents checking that you’re breathing every 10 seconds, and a village of people all around the world who love you more than you’ll ever know. Happy birthday, Calvie. 🦓 🦒 🦖."

    After 6 weeks in hospital Calvin is now able to take all his medication orally, so he has been transferred to the community care team and finally got to enjoy his own bed in a pitch dark room without beeps going off constantly - bliss!

    Megan and Sam are busy figuring out what their new routine looks like, and are beginning to look at longer term treatment and care plans for Calvin. Unfortunately there is not a lot of funding available to them as Calvin was under one when he became unwell, making it hard to measure the extent of his injury and what his long term needs will be. Right now he is working on his neck strength and beginning to regain the use of his right hand and legs with the help of a few specialists, with more testing planned over the coming weeks and into the new year.

    We are all so very grateful for the messages and donations to this page which will help fund care support over the next few months. We can't wait to spend Christmas together and celebrate each and every small and big win for our fighter Calvin.

    Finally an extra special Merry Christmas to families in starship, and the nurses and staff who work tirelessly to support them - they truly are superheroes.

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    • 12/12/2022 by Brooke

      This is the most wonderful news. Wishing your little family a very Merry Christmas indeed. Good work Calvin!! XOXO Brooke (Amanda's friend).

  • Calvin Update #2 - 22/11/2022

      22 November 2022
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    Hello everyone! Another Calvin update on behalf of Calvin, Megan and Sam.

    Over the past few days we have had some big changes! Calvin decided he was sick of both his brain drain and his feeding tube, so both have now been removed. He has been moved to his own room with Sam or Megan staying in with him overnight - a new routine to get used to as he can't quite tell the difference between night and day yet! He is spending his days enjoying some smushy solid foods, napping or touring the ward corridor in his pram.

    Calvins brain is still quite irritated and he is not yet clear of his meningitis infection, so the pain management team have been working hard to find the right daily routine to keep him as comfortable as possible. He has a constant rotation of various hospital and specialist teams working with him to check hearing, eyesight, brain activity, sensory awareness and movement etc to get a fuller picture of his brain injury and the path ahead.

    The highlight of this week has been getting a few smiles and giggles - he definitely makes you work hard for them but its so, so worth it to hear his little laugh - something we weren't sure we would hear again.

    A huge thanks once again for the continued support coming from near and far.

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  • Calvin Update 14/11/2022

      14 November 2022
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    Hi everyone - on behalf of Calvin, Sam and Megan we would just like to extend a HUGE thank you for the support, messages and donations - they say it takes a village and this has shown just how strong that village is!

    A quick update on Calvin: After a few nights stay back in PICU (Pediatric Intensive Care Unit) getting seizures under control and some more brain scans done, Calvin is back in the Neurology HDU (High Dependency Unit) at Starship. Calvin is breathing well on his own and spending a lot of time resting as he is still on a number of medications as he battles the infection. There are are a number of different teams working with Calvin to ensure he is kept as comfortable as possible. This week they will start some testing to begin to understand the extent of his brain injury.

    Calvin remains seriously unwell, but he's proven just how tough he is! His recovery is still very, very unknown but hopefully will become clearer over the next few months. The continued support is hugely appreciated.

    And finally, a shout-out to the incredible Starship nurses and staff who answer questions, offer support, sneakily allow more than two at the bedside and laugh with us through the poo-splosions - no one really understands how crucial these people are when going through a situation like this.

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