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Kahalau's Treatment

$67,902 of $75,000 goal

Raised by 546 people in 17 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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#GIVING TUESDAY
We want to take this time to update you on how Kahalau is doing on this very special day.

Kahalau has completed frontline treatment for Neuroblastoma Stage 3 High Risk with her last inpatient infusion being September 21st; and her last Round of Immunotherapy as home treatment administered by her caregiving mom in early November.

She had her NG (nasal gastric) tube used for supplemental formula feeding removed since her weight gain is stable and she loves to eat!

Kahalau is doing great! We can put treatments behind us for now. Her end of treatment scans mid November were indeterminate due to a super small questionable area near the bowel that usually is scar tissue from surgery. Because no spreading was detected she can stay on the study drug DFMO which is supposed to help prevent relapse. She will take it twice a day for 2 years as long as she does not relapse.

Kahalau’s VMA and HVA levels are at normal range (a protein that is present with active Neuroblastoma) which is very reassuring because it was over 200 at diagnosis and now it is 8. Normal levels are 0-12.

So Kahalau will now have monthly check ups at Kapi’olani Hospital off island on Oahu and a urinalysis every time to make sure there is no indication of relapse. Then she will get SCANS every 3 months which is a 3 day process at Kapi’olani for MRI and miBG scans...for a year.

That is what our new road map looks like! It shows more time at home with family getting life back and slowly recovering from all the toxicity. Daily doses of vitamins and minerals and extra Vitamin D and magnesium. Daily doses of playing carefree at home on Maui with daddy and sister again, where kisses flow freely with or without the mistletoe!

Kahalau endured a battle and the reward is here. The true reality of relapse is 50% so we live now like we never lived before and are so thankful and grateful for the outpouring of love and support that carried us through the journey.

Kahalau will most likely have her central line removed as long as her levels stay stable in the coming months. She gets visits from Make A Wish to remind her that her one true wish of meeting Mickey and Minnie at Disneyland will come true soon! We want to wait until her central line is removed for her to truly enjoy the experience.

Updates will come as available but please also visit www.fb.me/Kahalauscancer for more frequent photos and stories about her life after treatment.

Donations still help cover medical supplies, food and nutritional supplements, necessities of a growing toddler, and items that promote her well being. Mahalo for giving to this little Ray of sunshine! We pray her smile brings you an everlasting light of love and aloha.
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August 21, 2018

Immunotherapy Round 4
Dinutuximab and IL2
5 Day Infusion

Kahalau is 24 hours into enduring this combination of medicine to treat her Neuroblastoma (High Risk Stage 3).

It causes severe nerve pain which is controlled with a constant drip of Morphine. Infusion reactions as also controlled with many antihistamines and anti inflammatory medicines. It works by binding to neurons and causing the special white blood cells (IL2) to attack and destroy foreign cancer cells.

She will get through it because she is so strong and smart and funny and has a tenacious spirit. But also because she really really wants to go to Disneyland and do all the fun things normal kids get to do. She is highly motivated by being done with treatments to experience this.

In the mean time costs add up so much during treatments, especially since mommy takes a break from working so much to help care for her and get her through her treatments every step of the way.

Any donations are used to offset Kahalau’s costs of treatments, medical supplies, new apps to keep her busy and happy, favorite snacks and foods, healthy formulas and feeding supplements, clothing, toys, special Bite Squad or Uber Eats deliveries, and of course the big day ahead soon - going to Disneyland at end of treatment!

Thank you from the bottom of our hearts for your enduring love and support throughout this journey. Community funding has been the backbone of Kahalau’s treatment success.

Rachael would rather not work and carry this little angel through than be like most parents in the hospital who have no choice or even choose not to be apart of the daunting task of being a cancer caregiver. Nothing saddens her more than hearing the lonely cries of neighboring children who only have nurses and volunteers to comfort them.

Aloha and MAHALO
Donations small and big change our world!
Her whole body breaks out
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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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Raised by 546 people in 17 months
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