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Kahalau's Treatment

$65,022 of $75,000 goal

Raised by 519 people in 13 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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Immunotherapy Round 4
Starting August 13th,2018

We got clearance today for Immunotherapy Round 4 to start on Monday! Kahalau had to get a little poke at her lab draw at home on Maui and the results are sent to her hospital on O’ahu who then call us with the results!

Kahalau has had 2 wonderful weeks at home since her last treatment and she gets stronger and happier everyday. You can see how free she feels not to have too much disease left to bother her little body. Every treatment as hard as it is to go through brings her one step closer to remission and a better deserved life!

They don’t make it easy for the Neuroblastoma fighters because even though we were home for two weeks we had a whole regimen of medicines from shots to terrible pills to chew and swallow. We always celebrate for days when we don’t have to make her take the nasty Accutane by mouth.

Kahalau has also made two trips to the dentist since her last treatment as we are able to catch up with the wear and tear of cancer medicines on teeth enamel and decay.

But now we look ahead at a really hard round of treatment that we have to get through. It will be a grueling long 2 weeks in the hospital for Kahalau and mommy as big sister has school and daddy has to open the family art gallery for a few hours. Please consider any purchase small or large from U’i Gallery in Kahului or www.rachaelrayart.com to help support Kahalau and her family. Buying local matters and besides that mommy’s art is so colorful and happy!

Otherwise any donations here are cherished as we plow through the final months in Kahalau’s long battle against the Neuroblastoma VILLIAN!

Guided by faith and not by sight...

Aloha
Fatherly Love...
First time seeing a movie in 2 years!
Kahalau does lots of baking at home!
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She dreams of a life outside of these walls.
Away from the pain, away from it all.
A life where finger pokes and accessed ports
Are just a dream, or a nightmare of sorts.
She dreams of a childhood filled with friends and fun.
A childhood nurtured by fresh air and sun.
A life without chemo and sedation and scans,
Without stickers and nurses and i.d. arm bands.
She dreams of a life where she can run and play
Without me questioning what her counts are today.
A life where hospital visits are few and far between
Where she doesn't know the names of the oncology team.
She dreams of a life where monsters aren't real,
Where losing her hair isn't part of the deal.
A life where she isn't that kid who has cancer,
I wish somebody somewhere would just find the answer...
I dream of a life for her, where she can grow old
And hope all of this pain doesn't damage her soul.
A life for my baby that is happy and long,
Where she doesn't have to be so damn strong...
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June 22, 2018

Immunotherapy Treatments

Kahalau is doing great a year into treatment for her Neuroblastoma Stage 3 High Risk Cancer.

She remains high spirited in between the pain and discomfort even after 6 rounds of Chemotherapy, a 12 hour surgery resection, a Bul Mel autologous stem cell transplant, 20 days of radiation and now two rounds into immunotherapy.

Kahalau has 6 scheduled Courses of Immunotherapy with Dinutuximab, IL2, GM-CSF and Isotretenoin.

This treatment was FDA approved in 2015 for Neuroblastoma frontline treatment increasing the survival rate from 45% - 65%. It helps the bodies own white blood cells, along with special white blood cells created by GM-CSF and IL2, to find residual cancer cells anywhere in the body and eliminate them!

Side effects are fairly limited to the infusion days which are about 5-6 days long. They are fly like symptoms - high fevers, low blood pressures, capillary leak syndrome due to fluid retention, diarrhea, vomiting, loss of appetite which she is experiencing all. In addition it messes your electrolytes up so she has had to have multiple bolis of potassium, phosphorus, magnesium, sodium, and albumin. On top of it the nerve pain and hives are controlled with a steady morphine drip along with neurontin and antihistamines like Benedryl, Zantac, and Zyrtec.

It keeps you on your toes at all times where one thing leads to another and finding the right infusion rates of medicine to keep symptoms at bay from escalating.

This poor girl has endured the worse of it all and thankfully she is responding to the treatment so far. Her remaining 1/2 inch left is getting smaller and smaller. Most patients find that this final step clears them from relapse.

So thank you so much for loving her and supporting our precious warrior Kahalau! She has become quite the Neuroblastoma cancer patient and has adjusted to always flying off island for treatments or follow ups and staying months and months in the hospital with Mom, dad, and sister whenever possible.

Your kindness and donations have carried us this far and we won’t give up! Every little bit helps. Your donation brings her a super smile on her face
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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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Raised by 519 people in 13 months
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