Baby Kayz Weekly Travel Costs & Medical Expenses

Baby Kayz story

I’ve been holding off on writing this cause we’ve been holding on to hope & Having Faith that we would get better news each time we fly down to Oahu.

But that just wasn’t the case, each time we met with the endocrinologist in Kapiolani Pediatrics Ambulatory Center it felt like that little bit of hope would get taken away, and each time I head back home to the big Island I leave feeling speechless & like I got punched In the gut, only to come home to share the news with my Ohana.

In April Baby K had a Random Crazy High Fever’s that lasted almost a week. At the time she was 7 months.

The first day her fever came out of no where and shot up to 103. Took her to the ER & they sent her home still with a fever of 103.7 & an ice pop. 2nd day her fever came again mid afternoon took her to Urgent care, got there again her fever was at 103, while there shot to 104.

for 2 days Tylenol wasn’t helping.

Urgent care sent us straight to emergency room again since whatever tests they could do there all came out negative & her fever was still climbing.

By the time we got to the emergency room her fever was at 105.

2nd time at the emergency room they did every test imaginable, from simple to invasive to get to the bottom of her fevers, everything came out negative, finally admitted her after her fever wouldn’t break and was at 106 at this time ( after being in the ER for over 7 hours.

doctor ordered a ultrasound to check if baby had a possible UTI as a cause for her fevers. Next day they ordered an ultrasound since they found a little blood in her urine.

instead of finding a UTI or kidney infection they “ACCIDENTALLY“ found a MASS in her liver.

So they called for another ultrasound and CT scan at Kapiolani PAU Unit with the endocrinologist to get a better look at the mass on her liver & ordered blood work for tumor levels as well. Each time her tumor levels came back elevated.

After Multiple trips to Oahu, to get more ultrasounds, sedated MRI’s & Ct Scans.

Our first trip to Oahu we had to do yet another ultrasound, more blood work and meet with the endocrinologist, & to go over our possible plans. We had good news the tumor didn’t grow since the first ultrasound back in April so we were praying it was a benign tumor. I wasn’t ready when I walked into the pediatric cancer center & saw all the small kids walking in I was trying to hold back the tears as I was taking in everything.

As I met with the endocrinologist she went over 4 possible plans that “could” happen and try to “Prepare” me as much as possible. As of that week Baby Kay fell in the 1st plan to remove it & be done with it.

our first plan from there was to come back the following week to get a sedated MRI & Ct scan, to get a better look. And hopefully Baby K just had to do surgery to remove it and we’d be done from there.

Came back the following week to do a sedated MRI & CT scan so we could get a better look at the tumor & to make sure it wasn’t affecting or spreading to any of her other organs especially her lungs so that the surgeon could determine how soon we could do her surgery. Then went upstairs to meet with the endocrinologist to go over her results, we had good news that it hasn’t spread or grew since her last imaging. The tumor was still intact & incapsulated, so it would be able to be removed. They didn’t want to do a biopsy first because that was risky as well being that the tumor is still intact & she was at risk for internal bleeding, the tumor “leaking”, rupturing or aggravating it.

Still our family & Doc is holding on to hope that it is Benign & we don’t have to go through any of this.

We Went home that week to wait for the call for her surgery the following week instead we got a call that the surgeon looked at it at all angles and said it would be too risky to do the surgery because the tumor was less then a cm away from a blood vessel, so doctor got a second opinion from a mainland surgeon to see if they would do the surgery, they said the same thing, the tumor is too close to a blood vessel & her liver as well as the size of the tumor on her liver & didn’t want to risk it as well. Now we fell into the second category. Her second plan was to have 2 treatments to shrink it away from her liver and then possibly remove it from there.

So we had to come back the following week to do a sedated biopsy of her liver as well as a biopsy of the tumor. While Baby K was getting her procedure done I met with the Endocrinologist again to go over everything and from there I wasn’t prepared for what was to come, possible side effects, long term effects, She showed me visuals that if it is Hepatoblastoma (liver cancer), Everything that I needed to be prepared for. As much as I tried to hold it in I broke. She would now fall out of the second category “plan” that they had and now into the 3rd.

She showed me how her port would be surgically placed & removed under her skin for her treatments and now looking and 4 rounds of treatments. 2 to shrink & kill it & then have the surgeon look at it again & if we can do the surgery to remove it she’d have to do 2 more rounds of chemo. I wasn’t ready for this, this isn’t fair. Still our family & Doc is holding on to hope that it is Benign & we don’t have to go through any of this. Her biopsy was on Friday went home Sunday again to break the news to my family back at home. And wait till Monday for doctor to call back with the results.

Went home to wait for the call from her for the results it wasn’t news that we or anyone is prepared for, Hepatoblastoma,

Cancer. Her treatments now will be about 6 months of treatment. Flying back to Oahu for about a week or more at a time then back home for 2 weeks and back again. Her endocrinologist says that we are lucky we caught it now and that her accidental ultrasound found it now so that we can fight it now, while she’s strong & healthy and not something that was there and we wouldn’t have known & that she most likely born with it and they missed it while doing her last ultrasound while in the womb.

Now we have to be back this week so they can Admit her ASAP to get surgery for her port to be placed under her skin, and be there for about a week or longer to start treatments.

So blessed & grateful that we have our parents & family on Oahu that’s been with me every step of the way.

The hardest part of this process is not having our family here on the big island. We moved here 2 years ago.

having to bring only one kid at a time or switching off kids & daddy only being able to come when he can take off but he also needs to stay with our other Keiki to emotionally support them while I’m going back and forth 3-4 days at a time. Flying & rental cars have been so expensive already. As well as Finding places to stay while we’re there, we don’t want to feel like a burden on our family.

Our medical only covers a portion of 1 parent to fly (still waiting to get approval for all), and only covers a portion of the treatments & medical expenses.

I know Baby Kay has so many Prayers warriors & I’m so Grateful for everyones prayers daily & who continues to keep our Ohana in Prayers. We’re not sure how we’re gonna get through this but we’re standing STRONG in prayers, keeping the faith leaving it in Gods hands and staying strong for Kayz & each other. One day at a time.

We were hoping and praying we didn’t have to go this route to setting up a go-fund me because we were hoping for better news.

Our family did set up a fundraiser on PayPal just to help out with the costs we already have going back and forth already, and was trying to take it Day by day, plan by plan but each time her plan kept changing and she kept falling out of each category.

July 14-20 UPDATE 

This week’s update Friday July 14 Baby Kay had her 1st Surgery to have her Chemotherapy port placed, & another round of MRI’s, CT scans & hearing tests (because with chemotherapy, a side effect is hearing loss). Blood work came back that her hemoglobin dropped & During her scans they also found something in her lung that wasn’t there last week so we have to continue to monitor that with her upcoming scans. Saturday 7/15 - she had a blood Transfusion . 

Monday - 7/17 Baby Kayz started her first treatment of chemo Tuesday doctors were so amazed at her response to chemotherapy her doctor said we couldn’t her released and fly back home to the Big Island .

NEXT Monday- she has blood work to check her levels again if they drop again we’ll have to fly back to Oahu and be on island that week.

She has one more round of Chemotherapy (7/31) Then her surgeon will take a look at her scans to see if the tumor is resectable, if he can remove it she can have surgery and then she’ll have to do 2 more rounds of chemotherapy after to kill off what’s left. If her surgeon can’t remove it yet she’ll have to do another 2 rounds of chemotherapy then look at it again and go from there to see if it’s shrinking & dying off to be removed, then surgery, and then another 2 rounds of Chemotherapy.

And then her plan changed yet again 

The tumor shrank by 30% but still in the exact same place next to a major blood vessel. So her surgeon did no want to take any chances or risks.

Her new plan after her 1st 2 rounds on chemotherapy, is to do 2 (4 total before surgery) more rounds, another sedated MRI then have her oncologists & surgeon look at it again to see if has moved away from her blood vessel.

September 27th update 

Back in April doctors found a mass in Baby Kayz Liver. From then on our little warrior has been through so much! she already has been through liver biopsy & tumor biopsy, 5 sedated mRIs, CT scans, blood transfusion, 1 surgery (& still has 2 more to go), 4 Chemotherapy treatments (& still have 2 more to go), blood work every 4-5 days, traveled back and forth to Oahu almost every week, sometimes twice a week since June & She doesn’t even look like she’s Fighting Cancer! She’s been through so much! Last week September 15 we got good news her Tumor finally Sharnk even more and finally moved away from the major blood vessels, and her Surgeon gave the ok to Remove the Tumor ! Thank you Jesus Thank you everyone who sends me prayers, encouragement, checks on us when they can. Everyone who opened there Home for us. Thank you To our family & Everyone who makes sure we aren’t alone in this fight & there’s always someone who is there with us through this journey! 

Each win feels like a win, but then the finish lines feels so much further, it has been such an emotional roller coaster. But we know God has her in the palm of his hand through every single step. 

Kayz’s Fight is All our Fight! 

What is hepatoblastoma?

 Hepatoblastoma is a rare tumor (an abnormal tissue growth) that originates in cells in the liver. It is the most common cancerous (malignant) liver tumor in early childhood. Most hepatoblastoma tumors begin in the right lobe of the liver. Hepatoblastoma cancer cells also can spread (metastasize) to other areas of the body. The most common site of metastasis is the lungs. Hepatoblastoma is a very rare cancer. It’s a tumor that starts in the liver. It usually affects children less than 3 to 4 years of age. It usually doesn’t spread (metastasize) to other areas of the body. What causes hepatoblastoma in a child? The cancer is caused by a change in a gene. The reason why this happens is not known.