Kahalau's Treatment

$61,979 of $75,000 goal

Raised by 487 people in 10 months
Kahalau went from being a happy go lucky healthy child about to embark her journey in Hawaiian Immersion Preschool to being sick with a tummy ache and ataxia- hard time walking and keeping balanced. When she no longer wanted to walk or stand we knew something serious was happening.

We had a cat scan of her brain done on Maui to reveal nothing abnormal; were sent on the AMR medical airplane to have an MRI of brain to triple check; then a Spinal Tap to check for infections and those came back normal. We then had a Cat scan of her stomach and MRI of spine to see if anything was lurking there to cause these most unusual symptoms.

That is when we found a large mass in her stomach. A biopsy was performed on Monday July 3rd at Kapiolani Medical Center in Honolulu revealing on 7-11-17 she has Stage 3 High Risk Neuroblastoma - a pediatric cancer of the nerve cells. She qualified for a clinical trial and Will go through 18 months of treatment. Thankfully the cancer is isolated to her abdomen and has not infected her bone marrow.

She finished 6 rounds of inpatient chemotherapy in 5 months, a major surgery to resect what was left at Seattle Children’s Hospital and now is starting the consolidation phase of treatments with Stem Cell transplant, radiation, and immunotherapy.

We will keep you updated as we start this journey as an 'ohana.

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May 12th 2018

Now that Bulsulfan / Melphalan Chemo Stem Cell Transplant and Radiation is done Kahalau had an MRI and mIBG scan to see how the remaining tumor responded to treatment.

Good news! The little inch size piece left has shrunk 50% again. It is still positive or living tumor but at least there are no new growths or areas of disease!!! Plus her bone marrow aspiration was also negative once again.

Bad News: after day 1 Of 2 scans on O’ahu at Kapi’olani, she spiked a fever and blood cultures showed positive for pseudomonas. So we got admitted and she is being treated with IV antibiotics. She hasn’t had a fever in 48 hours so that is promising that the bacteria is not too strong.

She also had her first blood transfusion since stem cell transplant as her hemoglobins were dropping he last few days which is most likely from the lingering effects of radiation.

IMMUNOTHERAPY is her next phase of treatment which starts on Friday May 18 2018. She will get 5 rounds of inpatient medicine and one round of outpatient medicine.

This phase of treatment will use her own immune system to fight the Neuroblastoma cancer in her abdomen. Ch 14.18 is an antibody she will get. She will also get high doses of Isotretinoin and IL 2 Plus a study medicine called DFMO. This new study drug is in Phase II and shows a lot of promise in the treatment of Neuroblastoma. This will be tough just like chemotherapy with a whole list of side effects that will be very uncomfortable, painful and potentially dangerous.

It will be getting very expensive as well for medical care ($150K for IL2 mostly covered by insurance + $950K for total dose of 2 years of DFMO), inter island travel and meals etc so we are so grateful for any donation big or small to help our daughter and family fighting this terrible disease.

Our goal is to make this trial available to all parents so they can make an informed decision. The support of our medical team made this possible for us. After months of intense therapy to gain remission, many families are not only tapped emotionally, but financially as well. We believe parents should have access, and the affordability to make the choice. When your child gets diagnosed the life of the parents completely changes. You don’t have many choices, you have to trust your team (and we did). My underlining message is for parents to have the choice, and not have to worry about losing their house over it.

Kahalau will have an incredible story to tell one day because of people who gave from their heart so she could live to share her love and spirit with the world!
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April 26th 2017

Kahalau has 2 more radiation treatments left and she is done with that component of her Neuroblastoma Cancer fighting road map! We are so thankful that again she is responding well to treatment.

She has had practically no immediate side effects from radiation except for diarrhea. Her appetite continues to be great without needing a feeding tube and she is 95% of the day operating as if she didn’t just go through 9 months of the most grueling cancer treatments!

We are able to pour our love and aloha into her because of the compassion and unequaled generosity of the community donations. It helps so much to keep her in this fight with faith and hope!

Kahalau recently celebrated her 4th birthday!!! We have been doing radiation treatments on O’ahu weekdays and home on Maui for the weekends. What are the odds her actual birthday was at home! She had so much fun with a handful of family and friends to celebrate with.

We just want to say mahalo - thank you from the heart for all your love and support to get Kahalau through this cancer journey!

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April 12th 2017

Radiation To Abdomen

Kahalau has endured 8 days of radiation treatments and has 12 more to go! She will have 20 days total radiation to the area of tumor pre-surgery. Treatments are weekdays and we have been cleared to fly home every weekend.

So far Kahalau is maintaining her energy and spirit and the radiation has not made her sick with nausea or vomiting or chills or fever. They are amazed really! We are thankful that she is tolerating it and hope it won’t have too many side effects in the coming years.

Kahalau’s last radiation day is April 30th. Then she will be gearing up for the final leg of treatment in this conduction phase of treatment on her roadmap: immunotherapy with ch13.14. More details to come on this but she will endure 6 rounds and they are painful. It will take about 5 months to complete.

Keep Kahalau in your thoughts and prayers that her cancer goes away after enduring so much awful treatments. Thank you for your compassion and kindness to help us financially get through this difficult time in life. Every little donation helps her get through her days being as happy as she can be!

Radiation markers
Sedated and ready for treatment
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March 7th 2018

Kahalau and mommy have been at Kapi’olani Hospital in an isolated transplant room for 23 days now! It is 14 days after her stem cell rescue and she is doing great!

She went through a week of “chemo winter” with some hard days of throat and tongue sores, not wanting to swallow even her saliva let alone food and water. Leg pain was rough. But we got through it and thankfully without other major complications that can happen.

On day +9 - meaning 9 days after transplant she finally started having white blood cells grow back again in her bone marrow. Her ANC went from being 0 for 4 days straight, to a mere 19. Four days later to today her ANC is 14994!

She is slowly eating again as her mouth heals and even rode a tricycle to the playroom on her first day allowed out for an hour yesterday! Wearing a mask of course! We hope to be discharged on Friday and will need to remain on O’ahu for at least a week for labs and check ups. Daddy and sister will join us this weekend at the hotel and it will be our first time seeing sister in over 3 weeks!

Kahalau has a new birthday so to speak...February 21st will always be remembered as the day her bodies immune system was reborn! She essentially has the immune system of a newborn baby’s now and for the next 6 months will be on strict limitations for activities and areas she can go to to prevent her from getting viruses or bacteria infections.

We pray and hope that this part of her treatment road map was effective in killing off any remaining cancer cells in her body.

Kahalau still has some big steps ahead. Once she recovers in a few weeks she will be starting her radiation treatments. They will make a 3D model of her body where any of the tumor remains and use that to guide the lasers to dismantle any remaining tumor tissue.

After weeks of that she will go through a painful procedure called immunotherapy. Both treatments will be done on O’ahu again so lots of travel interisland which gets very expensive.

Kahalau is such an amazing young girl who has lived so freely giving so much love and happiness through her adversities. What she has endured with such courage and strength is out of this world. Thank you for believing in her and her family and for supporting her on this journey fighting Neuroblastoma.
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Raised by 487 people in 10 months
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