We are raising funds to give Ka’iulani Forbes the best fighting chance to beat Neuroblastoma.
Two-year-old Ka’iulani is fighting a high profile battle against a rare type of cancer, Neuroblastoma, after 50 GP visits failed to diagnose the disease. Since her diagnosis Ka’iulani has gone through chemotherapy and two major surgeries to remove 75% of the pineapple size tumour in her abdomen. The cancer has also caused tumours and bone disease throughout her body.
Ka’iulani has been fortunate to become the first New Zealand patient to receive one of the few remaining international places on a US immunotherapy drug trial, but for the wrong reason, her cancer is not responding to chemotherapy. The immunotherapy has promising and proven results and she has begun an intensive treatment regime that will continue for the next 12 months provided she can safely comply with the strict trial protocols.
Treatment plans for complex cancers evolve continually and the immunotherapy forms only one aspect; the secondary tumours and bone disease will require therapies not available in NZ. Starship doctors have advised that at the conclusion of the drug trial Ka’iulani will require treatment only available overseas to further remove the cancer and prevent relapse, removing the remaining tumour from her spine. They are currently consulting with doctors in New York, who are reviewing her scans, to develop the best approach.
Regardless of the final plan they develop, Ka’iulani and her whanau will need to travel overseas for treatment. We are raising funds to enable that to happen and give Ka’iulani the best fighting chance. All funds raised are being held in a separate bank account so that they are prepared when the time comes to proceed with the next phase.
Thank you for supporting Ka’iulani Forbes.
Ka'iulani's diagnosis was very late into her illness and as a result the cancer has grown and spread throughout her body. There is a very large tumour that is wrapped around her spine and multiple small tumours in her face. As a result of this she has experience severe pain all her life and bone deterioration.
The first person to suspect that Ka'iulani may be suffering from a serious illness was an eye specialist who was asked to look at the black eyes and swelling around her eyes that Ka'iulani was experiencing. He found that her skull was not developing properly and immediately referred her to Starship Children's Hospital in Auckland. After two non-invasive tests Ka'iulani was diagnosed with Neuroblastoma.
This was a shock to her parents and whanau, who had up to this point been told that she did not have cancer.
The treatment that Ka'iulani needs has the potential to cost millions of dollars. Her family are reaching out to the world to ask for help in giving their girl the best available care. Many people have come forward to offer their support.
If you would like to offer your support please check out our support page to see how everyone is helping.
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Neuroblastoma is a cancer that primarily affects children. It is the most common cancer that affects babies and the 3rd most common that affects children. The standard symptoms are a swollen stomach, a tumour in the chest which may affect breathing or the ability to walk, tumours in the bones around the eyes which cause distinct swelling and bruising, and anemia. Ka'iulani presented many of these symptoms.
Neuroblastoma patients are categorised into high, medium, or low risk. Ka'iulani has been diagnosed with high risk neuroblastoma, meaning she has been given the most aggressive chemotherapy drugs to combat the cancer's progression.
|What is Neuroblastoma?||Neuroblastoma is an aggressive cancer that usually starts in the abdomen. It is a cancer of specialised nerve cells called neural crest cells. These cells are involved in the development of the nervous system and other tissues.|
|What Age does it Affect?||This type of cancer almost always only occurs in children, with the average age of diagnosis being just 2 years old. It occurs very rarely in adults.|
|How Common is it?||It is the most common solid tumour in children under the age of 5. About 50 new cases are diagnosed each year in Australia.|
|Is there more than one type?||There are many types of neuroblastoma but they are broadly classified into low, medium or high risk, each with different treatments and prognoses.|
|What is the treatment for high-risk?||Multiple rounds of high-dose chemotherapy, surgery, radiation, stem cell transplants (normally two of these, referred to as tandem) and 6 rounds of immunotherapy.|
|What's the Prognosis?||It claims more lives of children under the age of 5 than any other cancer. The average survival rate for aggressive neuroblastoma is only 50% and the rate for the most aggressive form of Neuroblastoma can be as tragically low as 15%. A third of the survivors of neuroblastoma have long term side effects from their actual treatments.|
|Information from: http://www.chasingcharliescure.org/neuroblastoma.html|
Due to late diagnosis, Ka'iulani missed out on immunotherapy drugs that are no longer available outside the USA and Cananda. She has undergone 4 rounds of chemotheropy in an attempt to halt the growth and spread of the cancer. Unfortunately this was not successful and the tumour around her spine continued to grow. On the 20th March Ka'iulani underwent 8 hours of surgery to remove the tumour, with another 8 hours of surgery to go at a later date.
Treatment options after the surgery involve various drugs that are designed to destroy cancer cells throughout her body. The most promising drug available in the world is called Ch14.18, which has been branded as Unituxin in the USA. This drug is extremely expensive to purchase, costing up to $2 million for the treatment that Ka'iulani needs. Fortunaly, she may be able to get on to a clinical trial, in which case she would not be charged for this treatment. However, if Ka'iulani does not respond or tolerate the drug (which causes severe pain) it leaves few options in New Zealand. This would mean that Ka'iulani has refractory Neuroblastoma, which is a stubborn and non-responsive disease that is extremely rare.
On the 29th April 2017, Ka'iulani and her whanau received news that she will be eligible for the ch14.18 drug trial, which started the following Monday. There are really strict guidelines for her to be able to stay on this trial. This is the best shot Ka'iulani has in New Zealand for beating this cancer.
Ka'iulani will need further surgery to remove the remaining tumour that is around her spine. This will involve a number of trips to the USA.
A further treatment that Ka'iulani will need to have is DFMO, which is aimed at helping to prevent relapse and fight Neuroblastoma in a patient that has already relapsed. This will involve 2 yeers of treatment and 6 trips to the USA.
There are a number of treatment options left in the event ch14.18 does not work.
|4th May 2017||
"We have almost finished Day 4 of 5 immunotherapy with chemotherapy starting at 8am followed by antibody drug infusions until 11pm. Fortunately the doctors are happy with progress despite her vomiting, high heart rate and temperatures hitting 40 degrees. She is on morphine & ketamine to ease the pain of her immune system attacking the cancer in her nervous system and hopefully killing it! Each cycle consists of 3 weeks, with one week on drugs and 2 weeks resting and more scan updates. As long as Ka'iulani doesn’t get too sick or the cancer grows, we are able to keep on the trial for 1 year. If we don't make progress on the trial, the next step is to head overseas and access treatments not available here.
We got our PET scan results back from Friday which identifies active cancer and unfortunately all her cancer areas came back as active.
Over the weekend we got to see our little girl walking again after her surgery 4 weeks earlier and having fun, joking and laughing. We visited the zoo to see her favourite tigers and play on the slides. It was really nice to look at her and see our 2 year old for who she really is.
All going well we will get out of hospital after 7 weeks, for 2 weeks break which will be amazing!!! Will first catchup with Te Atakohu our now 8 month old and more zoo visits!
Only 2 weeks left selling tickets for our gala auction dinner with loads of exciting items up, from very generous donators. Thank you to the 220 people that have brought tickets so far! We are really looking forward to a great night with everyone!"
|29th April 2017||Ka'iulani and her whanau received news that she will be eligible for the ch14.18 drug trial, which started the following Monday. There are really strict guidelines for her to be able to stay on this trial. This is the best shot Ka'iulani has in New Zealand for beating this cancer.|
|20th April 2017||Some of Ka'iulani's whanau and friends begin a 200km walk from Hauraki to Kawhia to raise money for her treatment.|
|14th April 2017||In the last 4 weeks Ka'iulani has only had 3 days at home. This has been extremely tough for her and her family. Since her second tumour resection she has had a number of complications. Her central Hickman line had to be removed due to an infection, she had unusual body temperatures so she has had a lot of anti-biotics, and she needed to have a chest drain put in due to fluid build up. She has been nil by mouth because of this. Today, Ka'iulani's parents were told there there are only 4 spaces left on the immunotherapy trial that she needs to get on. This is obviously a cause of much stress because the drug is prohibitively expensive to buy outside of the trial. We are dependant on Ka'iulani getting on this trial.|
|5th April 2017||The doctor's decided to bring everything forward so that Ka'iulani will be eligible for the immunology trial earlier. This involves the nuclear scans, and MRI scan, and bone marrow biopsies. Ka'iulani is recovering from her surgery. Her bowels, intestines, and stomach settling into her body again, as they were all outside of her body during the surgery.|
|22nd March 2017||Ka'iulani is recovering from her surgery. Due to the intense pain she is experiencing as a result of the surgery she is being treated with morphine, tramadol, ketamine, and panadol. She hasn't moved since the surgery, it is important that she starts sitting upright to help clear her lungs and prevent them from collapsing.|
|20th March 2017||Ka'iulani underwent a major operation to remove the tumour near her spine. This tumour was over 10cm long and the principle cause of her pain. Half of the tumour was remove after a successful operation taking 8 hours. The rest of the tumour will be removed in the coming weeks.|
|18th March 2017||Ka'iulani and her family spent the weekend relaxing in Hamilton and attending the the regatta at the Turangawaewae Marae in Ngaruawahia, before her big surgery.|
|15th March 2017||Mani, Moana, and Ka'iulani appear on Maori Television to discuss their situation.|
|5th March 2017||Ka'iulani and her whanau appear on The Hui to explain what they are going through and to talk about how the late diagnosis of neuroblastoma meant that they missed out on a drug that could potentially cost them up to $2 million. Newshub provide an article that summarises the programme here.|
|4th March 2017||Filipo Fifita hosts a boot camp at Innes Common, Lake Hamilton to help raise money and awareness for Ka'iulani's condition.|
|22nd February 2017||Ka'iulani starts her fourth round of chemotherapy.|
|15th February 2017||
Ka'iulani is getting used to her time in hospital. The nurses give her courage cancer beads for all the different types of treatments she receives.
Mani and Mo received Ka'iulani's MRI results today, which showed that the cancer hasn't grown or reduced in size. This may indicate that Ka'iulani is resistant to the chemotherapy, that the cancer is refractory, the nature of the cancer is slow growing, or the cancer has matured and become benign.
The doctor wants to get the tumour out via surgery as soon as possible. This will be a risky procedure as the tumour is 9cm by 10cm and wraps into her spine.
|14th January 2017||
"We completed second round of chemo on Monday. Ka'iulani is expected to be neutropenic ( no white blood cells or immunity to fight any infection) around now due to the chemo which not only wipes out the bad (cancer ) cells but good ones too. We currently have a NG (nasal gastric) tube in which helps us top her up with liquid meals and medication. She's been eating pretty well so far so have just needed to top her up with bone broth for goodness and hopefully carrot/vege juice once a day from now on. She won't take these orally so the Ng has been so awesome because we can give it to her without her knowing well we know she kinda feels it a bit as gags but we try our best to distract her.
She's back on the daily growth hormone injections to help her body make new White blood cells quicker so we can have round #3 of chemo which is scheduled in 2 weeks.
We had a good meeting the other day with Ka'iulanis oncologist to see how Ka'iulanis progress is going and our plan of attack. Her MRI showed slight reduction in tumour size. The MIGB scan showed cancer in bones of legs face and possibly liver but we are faithful that the chemo will deal to these. She is currently classified as "high risk" so we are following the high risk protocol of treatment which includes 6 rounds of chemo , surgery to remove tumour, stem cell transplant, radiation and immunotherapy treatment. We just got some good news that her bone marrow biopsies in pelvis was Clear of cancer which the best news ever!!! We still waiting for DNA test results to come back from the states and we pray they are also favourable. The oncologist wants to biopsy her skull too Just to make sure it's not in that marrow.
Now for the not so good news. The immunotherapy drug that Ka'iulani is meant to receive has shown such huge success in mopping up left over cancer and keeping it from coming back is currently unavailable to everyone in the world except for the USA and Canada where it is made because the world demand far exceeds their ability to make due to its overwhelming success in fighting cancer. So children around the world have been told as we speak that they can't get this treatment unless they go to the USA and pay for it themselves and it costs --wait for it -- approx $ 2 million dollars. The one thing on our side is that we have about 6 months till we are at that part of treatment.
Ka'iulani as a whole has been in really good spirits and has shown just how strong and resilient she is. She is still full of beans despite being hit with frontline chemo, low platelets, low to no whiteblood cells and anaemia due to low red blood cells. She copes with the nausea and pain like a champ. We can usually tell when she is sore by her moods and irritable behaviour.
We have been blessed with meeting other families going through similar journeys. It's nice to relate and share experiences and create friendships through our little kiddies. Today Ka'iulani had a play date with iziyah and Kaylee. It was just lovely to see these guys outside of the hospital ward." -Moana
|5th January 2017||
"Back into Starship yesterday for an MRI scan that showed slight reduction in the tumour which is great, and now on chemo cycle 2. Ka'iulani has a feeding line through her nose as after chemo she is likely to lose appetite but needs to keep her nutrition intake up. She is a very brave little girl that keeps pushing through, with help from everyone! She will be going home each night which helps maintain a bit of normality to her life.
Happy New Year to everyone! - Manihera
|29th December 2016||
"Ka'iulani got a visit from some friends (Tahi the chimpanzee and Rua the Moa ) at the hospital all the way from Australia. She was so happy to meet them as you can see from her grasp around Tahi.
It's also starting to hit home the physical affects of her treatment with her hair falling out. We are trying to collect and keep as much of it as we can.
Ka'iulani is getting so much better with daily and sometimes hourly routine observations they do like blood pressure, heart rate, temperature, flushing her lines and drawing blood. She use to hate these being done and often gave the nurse a good fight and often refused to cooperate but she has come such a long way and now often initiates the whole process which is really lovely to watch however. She still refuses to wear nappies or pants because of pain and discomfort of where the tumour sits but she is happy to wear her cute big girl knickers her Aunty Alex and granny brought her at least. Phew!
I wish I could respond individual to all your comments, cards, Koha, messages and acts of kindness. It's been so overwhelmingly humbling to receive all your Aroha. I hopefully will be able to get in touch someway or another during this journey just to say a heartfelt thank you from Manihera and I."
|13th December 2016||
Ka'iulani begins her first round of chemotherapy at Starship. She is spending the week getting used to her new surroundings and the procedures and tests she will need to endure for the coming year. Her parents are discovering more about her condition and what she would have been experiencing before she was diagnosed. The doctors said that it was most likely the bone decay causing her pain, with the tumour causing the diarrhoea.
Ka'iulani is going to undergo an experimental treatment where part of her ovarian tissue is going to be removed and frozen in order to mitigate the risk of infertility that the chemotherapy brings.
|9th December 2016||
Ka'iulani is sent to Starship to have X-Rays after her eye specialist finds that her skull is not developing as it should and her bones are porous. Later in the day her parents receive the horrifying call that their daughter has Neuroblastoma and she is to begin chemotheropy immediately.
Lots of different people and groups have organised various fundraising events. There is a dedicated Facebook group that provides information on all events.
Ka'iulani's Give a Little page has been set up for anyone to give support to her ongoing care. Due to the generosity of over 1,000 people around the world we have raised over $60,000 so far! This has been a great help to Ka'iulani's parents both for the financial support and for the emotional support that such kindness brings.
On the 20th May, Mark Harrison, Chas Johal, Rebecca Clowes, Darren Smith, and Jade Shipley are going to tackle the Tough Mudder challenge in support of Ka'iulani. This is a difficult 12 mile obstacle course in Grantham, England with 20 obstacles to beat. The team are raising money through Just Giving, so click through the the link to donate!
Gala Evening Extravaganza at Auckland's Eden Park. 27th May 2017
Door Prize! Luxury Skycity Grand Hotel Package - every ticket purchased has the chance to win! Drawn at 5.30pm, you must be present in order to win.
Includes dinner and drinks, $149 per person or $1400 for a table of ten
Celebrity Tables! Enhance your evening and buy a table hosted by two surprise celebrities. $2000 per table, a limited number are available so be quick! (Note: these are tables of eight guests and two celebrities)