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Corey the Brave

  • Corey comes home..

      18 February 2019
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    There are many of you that already know but several who have yet to find out the news about Corey.

    Last week we learned the results of Corey’s remaining scans. The clear MRIs that he had a few short weeks ago did not cover his whole body, just the areas that Corey had disease in prior to us getting to New York... The remaining scans unfortunately showed that Corey’s disease has continued to spread, despite the horrifically toxic treatment he has endured.

    Corey’s body is still not healed from the VOD that we’ve been treating since the start of January and he is still requiring the drain in his abdomen. Even if Corey’s liver was healed he most likely would not be able to tolerate any additional treatment without the VOD returning.

    The best thing we can do for our son now is to get him back to our home in New Zealand. He deserves the chance to feel and play like a normal toddler.

    Corey has fought this battle so courageously over the last 11 months and there are no words that can express our heartache. We are so immensely proud of our son for going through what he has gone through, all with a smile on his face. He has truly been to hell and back and he will always be our hero!

    We left New York almost as quickly as we arrived and are now back home. This is the first time in 6 months that we’ve been here, and it is so bitter sweet. Corey is happy playing in the New Zealand summer sun with his dogs, cat, chickens and cows. He’s been driving his truck and collecting the eggs with his Papa. We even got him a new puppy, which Corey has names Biscuit. We will spend this very precious time creating memories and celebrating the best thing that has ever happened to Hayden and myself.

    I have always found it difficult to share Corey’s story so publicly and will probably be stepping back a bit more to truly enjoy every moment we are given. Thank you to everyone who has supported our family. There is no way we could’ve fought so hard with out you all!!

    Special thanks to everyone in New York that helped us get on our feet and made us feel at home. We are sorry for leaving so quickly and wish we could have said goodbye properly! We’ve been blessed to have crossed your paths and will do our best to keep in touch!

    💙🎗💙

    #coreythebrave #thankfulforthefight

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    • 18/02/2019 by Oamaru Men's Wolfpack

      Sending you all so much love 💕 you are so cute in your hat with your doggy Corey! Hugs xxx

  • Veno-occlusive disease

      22 January 2019

    It has nearly been two weeks now and Corey is still inpatient...

    What we hoped would be a simple fever that would keep us in for a few days ended up turning into a pretty serious complication. Corey has developed VOD (Veno-occlusive disease)... VOD is a condition where some of the small veins in the liver become obstructed, not allowing the liver to function properly. It was a direct cause from the harsh doses of chemotherapy and radiation that Corey has received so far.

    After our first night in hospital we noticed that Corey’s belly was getting bigger, his weight was increasing and his labs were off. His abdomen was filling with fluid. He ended up having a few ultrasounds to determine where the fluid was coming from. After being diagnosed with VOD the team here felt that the fluid in Corey’s abdomen would put too much pressure on his lungs if nothing was done, so Corey was scheduled for yet another operation, to place a fluid drain. The drain was placed on the 11th and is still in. Corey’s liver enzymes have slowly stabilized but they are still not all at normal levels. We will be inpatient until Corey’s liver has recovered, fingers crossed that isn’t too much longer. We are lucky that Corey’s VOD did not become too severe and that his liver responded well to the required treatment.

    This round of chemo has also taken a pretty major toll on Corey. His nausea was very strong for the first few weeks and he’s required a total of 19 blood product transfusions for this round alone!!! Which brings him to a total of 54 BLOOD PRODUCT TRANSFUSIONS since his diagnosis... Please if you’re reading this and able to, GO GIVE BLOOD!!! You would quite literally be saving someone’s life 💕

    On a positive note Corey has faced all of this like a champ. His team in Auckland always said how resilient he was and that resilience is stronger than ever now. Corey is out and about strolling the halls and playing in the playroom as much as he possibly can.

    As of today he is also officially no longer neutropenic 🎉 His neutrophils have finally come up to a safe level after 21 days of not having an immune system. We still have to be very careful but the risk of a life threatening infection has decreased.

    I wanted to also say a very well deserved Thank You to my husband! This journey has been excruciating but having you by my side through all of this means the absolute world to me. You are an incredible father and are my rock, I am truly blessed to have you in my life. Happy Birthday Hayden, love you more than you know! I am so looking forward to more birthdays where all we need to worry about is celebrating

    💙🎗💙

    #coreythebrave #Neuroblastoma #Neuroblastomaawarness #Fuckcancer #morethan4 #kidsgetcancertoo #childhoodcancer #gogiveblood

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  • Stem Cell Rescue 08-01-19

      22 January 2019

    Throughout this journey we have learned to take things day by day, as we never really know what to expect. Today ended up being a pretty rough one for Corey and us.

    Since March Corey has endured 10 rounds of chemo, 2 major abdominal surgeries, a brain surgery and radiation to his abdomen, liver, brain and spine!!! All of these treatments are intense and incredibly harsh on such a tiny body. As a result Corey’s bone marrow has gotten a bit tired trying to keep up with everything that’s been thrown at him.

    In the attempt to give Corey’s bone marrow a boost he received a Stem Cell Rescue today, meaning that he got given his own stem cells back. His stem cells were collected at Starship, our home hospital back in New Zealand in August and were recently shipped to NYC a few weeks ago. This rescue will hopefully regenerate Corey’s bone marrow, reducing the time it takes for his body to recover from the recent round of chemo and strengthen him going into future treatments.

    The rescue itself is just like a normal blood transfusion. However, it didn’t start as smoothly as everyone expected. There is a preservative added to the cells that allows them to be frozen. Corey was able to taste that preservative during the infusion which made him extremely nauseous, to the point of him not being able to breathe fully. He began desaturating quickly and he needed oxygen to be stabilized. It was very hard on Corey and horrendous to watch, no parent should experience these things!

    However things did stabilize and we carried on. Shortly after the infusion Corey spiked a fever... meaning that we are now inpatient. He’s had IV antibiotics started and blood cultures taken. Fingers crossed that no bugs grow and that this inpatient stay is a short one!

    Corey also needed a red blood cell and platelet transfusion along with today’s stem cell rescue. Felt like they threw the whole kit and kabootal at him. Happy to say that he is now feeling much better and praying for a better day tomorrow 💙🎗💙

    #neuroblastoma #neuroblastomaawarness #Childhoodcancer #kidsgetcancertoo #fuckcancer #gogiveblood #stemcellrescue

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  • Proton Radiation is Finished!

      30 December 2018

    This was a big week for our brave boy... After 16 days of treatment Corey got to ring the completion bell for his Proton Beam Radiation 🔔 While there are many more chapters of this journey left to go we are extremely happy to close this one! Words can not be expressed for how proud we are of our son 💕

    His radiation finished just in time for our next visitors... Poppa Jim and Grandma Andrea have arrived. Corey is overjoyed and loving all of the attention!

    We were hoping for a bit of break before his next treatment but there is no resting when it comes to this monster! The next round of chemo will start again on New Years Eve. We will definitely enjoy the next few days with Corey feeling well! Please keep Corey in your thoughts this next week. This next round is going to be tough, we are praying for a speedy recovery with little side effects

    💙🎗💙

    #neuroblastoma #neuroblastomaawareness #fightlightakid #kidsgetcancertoo #childhoodcancer #procure #protonradiation

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  • Ongoing chemo and now radiation treatment...

      5 December 2018
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    It has been less than two weeks from our last update about Corey, but it feels like its been months. Its been hard for us to catch our breath but we have no choice, so we fight on…

    Over Thanksgiving Corey received his 8th round of chemotherapy which lasted 5 days. This was meant to be a round that would have little side effects and was said to be smooth sailing as we waited for his Proton Radiation to begin… Well this was not the case for Corey. The last round of chemo has seemed to be the worst so far. His nausea was especially bad, even four different anti-nausea meds couldn’t keep him from getting sick multiple times a day. The one side effect that they did say “may” happen was diarrhea which kicked in full force about two days post chemo.

    We also ran into a few scheduling issues, which we are no strangers to. Corey’s Proton Radiation was meant to begin on Nov 28th and was pushed out until today. So rather than radiation starting his oncologists decided to give him another 3 days of chemo. Corey became so dehydrated and weak that they needed to put him on fluids to keep his electrolytes up. He has only seemed to perk up a bit the last few days and it is like music to our ears!

    Despite the last few manic weeks, we have also managed to get ourselves down to Sumerset, New Jersey to ProCure where Corey’s radiation is being done. Corey had his first Proton Radiation round today and was such a champ, as he always is! We will be in New Jersey most of December with us heading back into NYC over the weekends and for Christmas. Corey’s Farmour is here until Dec 15th and Corey is still in heaven. It is going to be very hard to say goodbye as we are all enjoying her visit!

    We also need to give a HUGE shout out to Dominic, Oliver, Maggie and George for organizing an incredibly successful luncheon for our family. We are so extremely blessed to have such incredible friends in our lives and we will forever be grateful for all their hard work. Thank you to everyone that attended and contributed to the event. I have said it before and I’ll continue to say it, we would not be able to face this fight without the support that we have been shown from all of you. Thank you all so much 💙🎗💙

    #neuroblastoma #neuroblastomaawareness #kidsgetcancertoo #morethan4 #fuckchildhoodcancer

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    • 05/12/2018 by sandy

      Aww thinking of you and always read the posts, have little boy the same age, cant begin to imagine what you are going thru.

  • Farmor Arrives!

      20 November 2018
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    Today has been a very exciting day!!! Corey woke up to a visitor... his Farmor (Hayden’s Mom, Danish for Father’s Mother) made it all the way from New Zealand to New York. After being stuck in Houston for an additional 24 hours from a freak snow storm that came through Thursday night.

    Corey is in pure heaven 💕

    Yesterday while Esther was stuck in Houston the three of us rented a car and drover to ProCure in Somerset, New Jersey. We are lucky to still be alive as my New York driving skills are basically nonexistent! Corey had a quick scan to map out the Proton Radiation that is due to start at the end of the month. The staff were great and so good with Corey.

    After his scan he got to have a play in the snow for the very first time thanks to that freak snow storm ⛄️ I think more snowy days are in our future...

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  • Corey Surgery

      12 November 2018

    Just a quick update: Corey had surgery again last week to remove the new growth in his abdomen. This appears to have gone very well, and in typical Corey fashion he has bounced back like a champion after 9 hours of surgery from some of the best in the world!

    Here is a link to a follow up article from Stuff that gives more details on how the family are doing.

    https://www.stuff.co.nz/national/108477143/taranaki-couple-keep-fighting-for-twoyearold-sons-life-in-new-york

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    • 20/11/2018 by marian

      Lovely photo Marian and John

  • Beads of Courage

      31 October 2018
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    These are Corey’s Beads of Courage. Each bead represents a treatment or experience that our son has endured these past 236 days. They are a beautiful way for him to tell his story and will hopefully be a reminder to him when he is older of his Bravery throughout his fight.

    So far Corey has earned 676 beads during his journey. 561 of those beads he earned in New Zealand where he was treated at Starship Children’s Hospital in Auckland. He has earned an additional 105 beads at MSKCC here in New York. Nearly 3 beads per day since the start of his journey!!!

    While these beads represent our son’s bravery I find them very bitter sweet because we know exactly what each and every bead symbolizes. No child or parent should ever have to go through what Corey and hundreds of other children go through simply to live.

    We continue to be blown away by the strength and resilience our 2 year old boy has. We are so proud of him each and every day. Thank you all for your continued love and support 🎗💙🎗

    #coreythebrave #neuroblastoma #childcancerfoundationnz #beadsofcourage

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  • Upcoming scans..

      30 October 2018
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    Well after 9 days of being stuck in the hospital I’m pleased to say that they have finally discharged Corey 👏👏👏 The spot on his hand has healed after some pretty heavy duty antibiotics and his white blood cell counts is climbing back up to the semi-normal range. Corey was neutropenic for a total of 20 days... 20 days without an immune system and a total of 11 days of being attached to a pole receiving IV antibiotics. We made the most of our time locked up but are so relieved to see him back at “home” and look forward to getting out and about tomorrow!!!

    This week is a pretty scary one for our family. Corey will have new scans that will show how he has responded to the treatment and determine what comes next in this journey. Please keep our boy in your thoughts and prayers over this next week 💙🎗💙

    #coreythebrave #neuroblastoma #fuckcancer

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  • Post Chemo Life

      24 October 2018
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    It has been over a month now that we have been in New York City. We have met some amazing people and families here so far and are becoming more familiar with this new temporary life.

    Corey’s fever from his last admission didn’t last long and nothing grew from his blood cultures taken so we got discharged after the 48-hour waiting period. It was perfect timing because Corey’s Aunty Michelle came to visit us from Washington State. It was great having Shell come to visit, Corey wasn’t 100% as the chemo was still causing him to feel a bit crummy but he was nearly back to himself by the time she left.

    The last round of Chemo that Corey received was quite strong and it has suppressed his immune system leaving him open to bacterial or viral infections. The day after Michelle went home we took Corey into clinic as we do most day. During the week he had either cut his hand playing or possibly been bitten by a bug. The spot on his hand was not healing and after monitoring it for a few days the team decided to admit Corey again. He was not running a fever and was feeling good, but he needed a stronger IV antibiotic simply because his immune system is too low to heal the spot.

    We’ve been admitted since Saturday the 20th and Corey’s blood counts have still not come up and the spot has stayed the same. Besides being stuck in the hospital we are making the most of our time. Spending lots of time in the playroom and running up and down the halls in his gum boots throwing a ball to anyone who will throw it back. Corey’s spirit is high, and we will hopefully be outta here once his counts start to come up and the spot on his hand heals.

    New scans have been schedules for the end of month and the anxiety of those results has already started to hover over us. We are trying to enjoy each day as it comes and are looking forward to our next lot of visitors… Auntie Ruthie and Uncle Lennert arrive in just a few days from Amsterdam and we can not wait to see them!

    #coreythebrave #neuroblastoma #beautifulboy #fuckcancer #morethan4 #skellerupredbands

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  • Corey's Treatment

      11 October 2018
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    Hello all, just wanted to give you all an update on Corey and our New York journey. We’ve gotten many messages of love and support and are still incredibly humbled and blessed with the fundraising that our family, friends, co-workers and strangers are doing for us. It is truly a beautiful thing seeing how our community is rallying behind our brave little man. Please know how grateful we are for your support.

    As many of you know this experience has been a roll coaster ride... and not the fun kind. Some days we have up, and other days we have downs and there is no getting off early.

    I’ll start with the good news from the past week. Corey’s brain and spine MRI are clear and show that nothing new has developed over the last month. Corey still very much requires treatment for his CNS Relapse but at least we’re not dealing with any new tumours!!! Another bit of good news is that Corey’s bone marrow aspiration also came back clear. We have learned to truly celebrate every win that comes our way, and this is a good example of that.

    The bad news however is that Corey’s CT came back and showed that the tumour in his abdomen has continued to grow from his last scan in early September. We were hoping that Corey would have a surgery to remove the tumour when we first arrived but that plan very quickly changed. Our only option is to attempt more chemo to see if his tumour will once again shrink and will once again be surgically removed.

    Corey started his 7th round of chemo on the 4th of October which lasted 5 days. This round is referred to as ICE and is stronger than anything he has received so far. He has been incredible throughout the start of this round. He has received several anti-nausea medicines and has only shown a few minor side effects. We do anticipate the side effects to kick in more over the next week and we’ll be ready for them if that happens.

    Hayden and I have had to put our chemo hats back on which means many different things. Chemo is released through Corey’s urine and can be quite dangerous for those caring for him. Diaper changes require mats and gloves and if his diaper leaks on his clothes or bedding it all needs to be stripped and cleaned separately. It also means diaper changes every 1-2 hours over the 5 days because the chemo that is released can very quickly damage his skin. We have alarms set for the different anti-nausea meds along with diaper change reminders, sort of feels like we are caring for new born again.

    It has been several months from Corey’s last round of chemo, so we are hopeful that he will continue to respond now. We are living day by day trying to soak in every ounce of our boy. It will be a challenge keeping him isolated here in New York but we’re going to give it a good go while trying to make the most of each day.

    We’d like to thank you all for your continued love and support. The future and the unknown are simply terrifying, but Corey is indeed the bravest little guy we’ve ever known, and we will continue to fight.

    #coreythebrave #neuroblastoma #fuckcancer #morethan4 #beautifulboy

    - Written by Aly

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  • NYC - Update from Aly

      23 September 2018
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    Hello all, just wanted to give you all a quick update on our travels to New York and the first few days in the Big Apple. First off Corey travelled like a rock a star! The long trip was pretty draining on us, but we made it in one piece. We were incredibly lucky to have Mark, a cousin of Hayden’s fly over from London, to meet us and show us around. We would’ve been completely lost if we had to manage this move on our own! Needless to say, both Hayden and I are extremely out of our elements and were so grateful for the help!

    I had a laundry list of things I needed to get done straight away to get Corey the medical coverage that he needs to be treated at Memorial Sloan Kettering Cancer Center. Everything seemed to fall into place and I am happy to report that Corey’s Medicaid coverage has been APPROVED. This is such an incredible relief for us, if it was not approved we’d be flying back to New Zealand without much hope to hold onto. There is still quite a lot to learn and navigate through in terms of the healthcare system and what we will be responsible for, but we at least have a starting point, the rest we can figure out as we go.

    This past Friday Corey had his first appointment with his new doctor. She was lovely, and Corey seemed quite comfortable with her straight away. Next week will be incredibly busy, several tests and procedures are needed to determine the next step in his treatment. Next week Corey will be having Blood tests, MRIs, CT, Bone Marrow Aspiration, Lumbar Puncture, MIBG Scan and an Echocardiogram. These tests will take most of the week and possibly the next week before a new treatment plan can be made for him. We’re hoping that multiple procedures can be grouped together to minimize the number of times Corey has to go under general anaesthetic. (All of these tests were done not even a month ago but the move to a new hospital requires new scans and we understand it is part of the process.)

    As for the weekend we have been trying to make the most of our time together in New York as a family. It has been several weeks from Corey’s last treatment which means he is running at full speed. We have been all over the city and are amazed at the actual size of it all. I mean we knew it was big, but we had NO idea just how big. While we are trying to make the most of our time here we will be counting the days before we get to head back home to New Zealand.

    There has also been so much happening in NZ and here in the states for Corey. Hayden and I are so enormously grateful for the support that we are receiving. Corey truly has an army marching behind him and we are blown away by it all. Please know that we are so humbled by the generosity we have received from so many of you!

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  • NYC

      21 September 2018
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    Aly, Hayden, and Corey made their way to New York on Wednesday and are preparing for their first doctors appointment.

    They have organized an apartment and are settling in as best they can.

    When we can we will update you more! Keep those positive thoughts and prayers coming, every little bit counts.

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