Help Ka'iulani beat Neuroblastoma
Our little girl Ka'iulani, who has just turned two, is fighting a rare cancer called Neuroblastoma, which has spread throughout her body
Waikato
Three-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, including 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.
If you would like to, please feel free to follow her journey on Facebook by joining the group Ka'iulani's Journey
https://m.facebook.com/groups/1019443918202465?ref=bookmarks
Alexandra Harrison Forbes' involvement (page creator)
I'm Ka'iulani's Aunty Alex. Since receiving her diagnosis we have had many people ask how they can donate to support our little girl and her ongoing medical costs.
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Latest update
Update for 2018! 30 January 2018
Ka’iulani turned 3 years old last December at the same time she completed her tenth round of chimeric immunotherapy with chemotherapy. Unfortunately the disease had started to grow slightly so we decided not to proceed to round 11 and instead gave her December off from treatment to let her enjoy Christmas with family. The immunotherapy had been heralded as having good results against neuroblastoma so having invested 10 months into this drug to fight the cancer without improvement, we were left extremely disappointed
In January 2018 Ka’iulani travelled to Sydney for MIBG Radiation Therapy. Nuclear medicine is injected into the body in the hope it attaches to the tumour cells and kills them. The process was a lot more involved than chemotherapy as Ka’iulani was radioactive meaning people were only allowed in her room for short moments during the 4 days of treatment (see attached photo). During treatment Ka’iulani was put under sedation and on automatic breathing. It was a great relief when she started breathing on her own again as the machine was turned off! If the cancer decreases or stays the same size we will be back to Sydney in March. If it grows we are not permitted to do the second round. Although they have told us it will not remove the disease we have been praying for a miraculous improvement!
Last year a new antibody trial was started and has moved into phase 2. This trial was for kids that had similar cases as Ka’iulani with tumours and disease in both the bones and bone marrow. So far the trial has had very good results and gives us hope the same will be achieved for Ka’iulani if we can get on it. It is available in both New York (USA) and Barcelona (Spain), so that is where we are trying to get to next! Barcelona will be cheaper than the New York option so we are continuing our fundraising to afford that option. Watch this space…
As always a massive thank you to everyone who supports us!
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