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Support us through Isaac's leukaemia treatment

  • End date confirmed

      17 April 2022
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    We're heading into the cooler months and reflecting on what's been an exciting but also nerve-wracking last 2 to 3 months. Isaac's had an absolute blast at the beach this summer and is reluctant to let the cold keep him out of the water. He also enjoyed a few excellent weeks at kindergarten before the inevitable happened. He picked up something viral with some classic covid symptoms but had a negative PCR and several negative RATs results. No fever thankfully, so there was no need for us to get him to ED and up on the ward for monitoring. Marc and I also got sick via Isaac, and we both had some classic covid symptoms, but again all negative results. We continued to isolate as if we were positive as, by then, many children at the kindy were testing positive.

    We made the decision to keep Isaac home from kindy while covid is surging through our community. While it was sad to cut his kindy experience short we're stoked with progress he's made with his communication and social skills. Kindy helped him a lot. Being with other children and adults in an environment as nurturing as Wairakei Kindergarten really hit the spot. Joining them was the best decision we could have made to fuel Isaac's development and adventurous spirit! Hopefully he will make a return in Term 2.

    We are due back at Starship end of April for Isaac's next scheduled clinic appointment. This also involves chemo and a lumbar puncture/more chemo intrathecally in theatre the following morning. Last visit we were given the exciting news that Isaac's official last day of treatment will be 16 November this year, 2 years and 2 months from his diagnosis date. This is slightly less than the normal prescribed time for his type of leukamia treatment but we're not complaining.

    Isaac will have spent half his life in treatment by that date. Just thinking about that chokes me up with sadness. However we're proud of our little lion cub. He's the strongest, happiest human we know. He knows how to seize every single day which will stand him in great stead for a wonderful life beyond leukaemia.

    It's a little early but we're already starting to count down the days. By our reckoning Isaac will only need to visit Starship two or three more times to complete prescribed clinic and chemo appointments. He'll also need his port removed which requires surgery. Other than that, he'll continue daily chemo pills at home until 16 November when we can just stop. It feels surreal to say that.

    We've enjoyed recent visits from family and friends, most notably from Isaac's godmother Kayla (my eldest niece). Just having her home from the UK was such a blessing for our entire family. Isaac has always had such a lovely bond with Kayla and it was so beautiful for them to connect again.

    I often show people how well Isaac is doing and rarely show or discuss how tough this journey has been on us a family unit. We have good people and great organisations supporting us and now, with an end date in sight, we're so eager to plan and prepare for our son's exciting future.

    But we miss our families. We don't have any immediate family here and that's been really hard to deal with throughout Isaac's treatment. We're still navigating our way through life with covid and all kinds of risk that come with Isaac's lowered immunity and voided vaccinations. Over the next couple of months we hope to take some calculated risks and spend precious time with family. Isaac will love it and kids just seem to know who's family even if they haven't seen them in a while.

    Thank you to everyone continuing to check in on our little guy and supporting us behind the scenes. We love you all and hope to have more good news to share with you soon.

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  • Kindy kid!

      6 February 2022
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    Where to start? The last few weeks have been so hectic but happy for Isaac and for us as a whānau. We really enjoyed catching up with family and friends over the summer holidays. We met up with more people over the holiday period than we've seen for the entire year previous! It makes us a little bit nervous widening our small circle like this but people have been really respectful and helpful, checking in with us before arriving and arranging meet ups at the beach or other outdoor settings to keep everyone safe. It filled our hearts with joy to let Isaac simply be with people we love and care about. It gave us a much-needed boost in morale too after such a long, lonely slog.

    We've got the most incredible team at our local Wairakei Kindergarten supporting us and Isaac back on the path to early childhood learning and fun. It's been heartbreaking keeping him on life's sideline for so long. With their help we were able to restart Isaac on his learning journey on 1 February. That's my (mum's) birthday too, so it was an extra special day for us as a family. He is so ready for this; he plays hard, loves people, and loves learning. The poor teachers are learning just how much he will keep them on their toes as he drags them around mercilessly to do activities with him! It will take time for Isaac to learn the social and communication skills the other kids are already well versed in, but it will come. He is eligible for general and dedicated support funded by the MoE and our DHB, which is fantastic.

    Omicron is a bit of a bummer but we're keeping an eye on things. Until it becomes really problematic here we will continue to send Isaac to kindy. It's always a fine line but we're feeling OK with how things are shaping up. We sought advice from his oncologist, in short their teams are preparing for covid to surge now and peak in around 8 to 12 weeks. Evidence they've gathered suggests young children in the maintenance phase of treatment and who are otherwise healthy (like Isaac is) have a similar level of risk of serious covid infection as 'normal' kids which is relatively low, particularly with the Omicron variant. So we're going to get as much kindy in as we can this month before we probably have to sit things out again for a bit. We'll take what we can get.

    Isaac's bloodwork has been coming back really good over the last few months - too good in fact. So yet again his daily chemo dosage has been increased to help bring his white blood cell and neutrophil counts down into the 'optimal range' for his treatment to remain effective. This means his immunity will start to lower over the next few weeks once the increase kicks in.

    It's never a straightforward journey. There's always a curveball being thrown our way to weigh up. We try to take it in stride, we're used to things being a little outside of our control.

    Isaac is loving the 'newness' of kindy and asks if he's going every single morning now. I love his enthusiasm for people and learning, it makes us feel so good to see him live life. He's such a beautiful soul and we don't want to hide him away from the world any more. Striking the right balance is tough but he's leading the way, showing us he's so ready to take on the world x

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  • That's a wrap

      23 December 2021
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    Phew! 2021 is drawing to a close and quite honestly, we can't wait to see the back of it. We know 2022 will be full of new challenges but it also promises the end of Isaac's leukaemia treatment, all things going to schedule. That's something worth celebrating so next Christmas is going to be extra special!

    Looking back, this year was insane for absolutely everyone. For us, it was quite taxing on our bodies, our minds, and our wairua as we learned to help Isaac navigate through really intensive chemotherapy for the first six months. The Delayed Intensification stage of treatment lived up to its fearsome reputation. The chemos introduced at this stage are so strong they leave your child feeling and looking like a stereotypical 'cancer kid'. Isaac could barely eat, he lost all his hair and eyebrows (as in, absolutely bald like a cue ball), and was violently ill at the start of this stage. But, just as we have with every other stage of treatment, we eventually found a way to help him beat the nausea and get enough food and drink onboard to avoid the naso-gastric tube. This kid has the strength of a lion, he simply doesn't come with a 'pause' button and he never gives up. All year we've managed to keep him well, avoiding the need to take him to hospital for anything other than his scheduled appointments.

    We've had a 'successful' year in that we all made it through intact! Isaac is doing so great, he lives for bike and scooter rides, beach swims, digging holes and collecting shells. His zest for life is so awesome, it's 110% inspiring and keeps us going.

    Truthfully, both Marc and I are really tired and not feeling our best. We need to take better care of ourselves in 2022 so we can give Isaac and each other our best. We love and miss our families; we want to connect with them all safely and as often as possible. This shit is really hard, and it's not until you have time to take stock of it all that you realise just how broken you really are. My body is a wreck. We're ok, but we both need healing and better health too. That goes for everyone.

    Thank you and Meri Kirihimete to each and everyone one of you reading this. 2021 has been hardcore but you've helped take the sharp edges off with your love and support. If you feel inclined to donate please redirect your generosity to one of the following groups doing awesome mahi in our local area. It would mean the world to us if you could help those in far greater need than us this holiday period. Thank you, and have a wonderful, relaxing break :)

    Women's Refuge Tauranga - https://taurangawomensrefuge.co.nz/donate

    Under The Stars - https://givealittle.co.nz/org/under-the-stars

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  • Cycle 3 is underway

      14 November 2021
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    We have just returned from Starship recently where Isaac began Cycle 3 of 6 in Longterm Maintenance phase of his treatment. Each cycle is 84 days (12 weeks) long and, for us, begins with a trip to Starship Hospital in Auckland. Once there we meet with an oncologist to discuss how things are going, get the next 12 weeks' worth of meds and chemo pills to give Isaac at home, and talk through any issues. Bright and early the next day Isaac goes into theater for a lumbar puncture and methotrexate chemo delivered directly into his spinal fluid. This can only be done under anaesthetic, and only at Starship as the lead facility.

    We've developed lovely relationships with Starship's nurses, doctors, play specialists, admin teams and even the cleaners on Ward 27a and 27b over the last 14 months. Everyone there plays a key role in keeping families and our precious children safe. They know us by name, they marvel at how much Isaac has grown each time we return, and they treat him like one of their own. We are in the best, safest hands up there.

    Marc and I were really apprehensive about bringing Isaac to Auckland, with covid cases hitting records highs and rules for crossing the border being unclear and open to interpretation. We decided to err on the side of caution and get tested for covid before we left home and immediately upon arriving in Auckland so we'd have results to get back across the border safely. It was the right choice although police didn't ask for our test results(!), they were happy enough with our documentation.

    We took Isaac's bike for the trip and I'm so glad we did. After our oncologist's appointment we drove across to the Domain and Isaac rode right around and in front of the museum. We had this incredible space with expansive views of this beautiful city all to ourselves. It brought back memories of when Isaac first went into treatment and put on five kilograms due to the daily steroid pulses. We'd come up here to keep him moving, to grab a bite to eat, to clear our own heads; to find peace for a few minutes in the complete chaos of leukaemia treatment's induction phase.

    Having the space to ourselves was in stark contrast to recent scenes. Scenes of huge crowds gathering to 'fight for their freedoms and rights', packed in together like sardines shouting, doing haka and singing kumbaya - in the middle of a pandemic! Protesting public health measures that put the collective rather than individuals first. I won't go on but it's fair to say I don't feel good about the protestors actions in a space that's sacred to us on our son's leukaemia journey.

    Now here we are with covid simultaneously hitting a number of centres across the North Island and our hometown pinging positive on wastewater tests. Rallies across NZ and the massive protest outside parliament all within the last week were undoubtedly super-spreader events.

    The dream we had to get Isaac to kindy early next year is all but dead. This is a real blow as he needs something more to improve his functional communication and social skills. He's such a happy, fun-loving kid. I'm gutted he won't get to add something he desperately wants and needs in his life for a long while yet.

    We've decided to go into self-imposed Level 4 lockdown for the foreseeable future. It's the only way we can keep Isaac safe while Delta cases are on the move and growing. Everyone is dealing with covid from their own perspective which is fair enough, as that's what we're doing ultimately. We simply can't rely on others to always do what's necessary to protect our son's health and wellbeing.

    Our little champ is blissfully unaware of all this noise, he's too busy being the happy, fiesty, beautiful boy he's always been and he's doing great!

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  • One year down, one more to go!

      25 October 2021
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    Firstly thank you so much to everyone who has given so generously over the last few months. We were so relunctant to go on Givealittle until friends insisted on starting a page as a way to show us some love and help from across NZ and indeed the world. It's been incredibly humbling.

    Isaac is doing amazing! The one-year anniversary since he started treatment just passed on 16 September 2021, and it's been one year since he was declared to be in complete remission on 20 October. Despite treatment being really intense and frequent during that first year Isaac got through it with a strength and full-of-life attitude that we are in complete awe of. He never stopped smiling, laughing, riding his bike hard and dashing toward the surf. His zest for life is infectious.

    Somehow we managed to keep him well that whole time. It's exceedingly rare for kids in leukaemia treatment to not get sick at some stage due to their lowered immunity and fevers that come on simply by having few neutrophils at times.

    He's so well our biggest concern now is saving him from himself! His daredevil antics finally caught up with him the other day, and he's got his first cast after breaking his wrist falling from his bike. In true Isaac style he didn't complain as much as you'd expect a child with a broken bone to complain, so we didn't know it was broken until we took him to A & E the following morning "to check, just in case". Auē, not our proudest parenting moment!

    Right now we're working on improving Isaac's speech and language development. A year in intensive treatment plus Covid restrictions prior to his diagnosis meant Isaac missed out on crucial social and learning opportunities. His functional communication is lagging for his age. That said, he understands everything perfectly, has a huge vocabulary, and is a phenomenal speller (he can even spell CHOCOLATE! He's just turned 3!). So he's incredibly smart but we've engaged a Speech and Language therapist to help us help him get talking more.

    We also investigated in-home and small group daycare options to help with all of this, however the broken wrist means we can't until next year now. The threat of Covid may once again shut the door on these options completely.

    I (mum) have been able to pick up some project work recently to help bolster our household income. I'm taking things slowly and still reserving most of my time to Isaac's ongoing care. Marc is doing well and takes care of our major outgoings. He sends his sincere thanks to you all - all donations go into his account each month and go straight toward our utility bills so we don't have to worry about them.

    Isaac is currently in the final stage of treatment called Long-term Maintenance. It's the longest stage and, as the name suggests, it's about maintaining the state of remission achieved earlier in his treatment. He receives lower doses of chemo but daily. We give him chemo pills at home every day, and every 12 weeks we go to Starship to meet with his oncologist and he receives additional chemotherapies that can only be given there. The chemo's job is to suppress the immune system so it can kill off any residual cancerous cells that may be in his blood or central nervous system. Overall there's more room for us to breathe and for Isaac to simply enjoy being a toddler.

    Lastly, it can be tough trying to balance the realities of treatment with every day life. We must get his blood tested at the hospital every two to four weeks throughout the remainder of his treatment. We are trying to find ways to minimise local hospital visits so we can avoid Covid once it's in our community. We've asked people we love and care about to please consider getting vaccinated to stay well and out of the hospital system should they get the virus. Both Marc and I are vaccinated to give ourselves the best chance of staying well for our boy, and to adopt a kaupapa of support for those who are vulnerable in our communities like Isaac is. We're also prepared to lock ourselves down if necessary - we do it all for him :)

    Treatment is scheduled to end in Nov/Dec 2022. Thank you for standing by us, by our son. Arohanui to each and every one of you.

    Isaac, Marc and Rata x

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