Lily Beats Neuroblastoma

Aloha friends & family,

I hope this message finds you well and your holiday season continues to be bright through the New Year. It is under difficult circumstances that our family has created this GoFundMe as an update page for our friends and loved-ones to follow and an outlet to assist our family financially, if compelled, during this healing journey.

Unfortunately, we must announce that our sweet 10 month old daughter, Lilia, was diagnosed with intermediate stage Neuroblastoma 3 weeks ago. This is about the hardest thing you can learn about your child and likely one of the hardest things we will go through as a family; emotionally, mentally, physically and financially. We were an absolute mess for 2 days (worrying greatly about Lily, our boys, our family) but I woke up that next night, prior to our first flight to Oahu, with a renewed sense of focus and determination to save my baby girl and I have been operating from this place since then.

Many people have questions and I have done my best to give a rundown of our last few weeks. I will try to update everyone regularly as we proceed through this journey. In short, the immediate plan is to leave Maui (and Hawaii) as soon as possible for the best care available.

As you read through, it’s easy to be disheartened. However, I want nothing but confidence and reassurance from everyone in my life that she will be okay. I want her story and journey enshrouded in positivity, hope and faith that she will make it through - because she will!

How we found it:

Found incidentally. She has had no obvious symptoms, fevers, or weight loss. She has been happy and healthy. 3 weeks ago I decided just to feel around on her abdomen (I do this on all kids just flippantly, but I'd been seeing a lot of St. Jude's commercials and decided to just push around). When I did, I felt the mass deep in her left abdomen. I wasn't 100% sure but my suspicions were high as they teach you in school there is only one reason for pediatric masses. I quickly made a consult with her Pediatrician (who was out and we were seen by a sub). We were promptly dismissed and told to return if still concerned. I immediately made another appt with a different MD a few days later. He felt the mass, quickly sent us downstairs to Ultrasound and a 7.5x5cm suspected malignant mass was confirmed within 30 minutes. I think I broke into a million pieces in that office while he told me. I will never forget that moment. I went home to tell La and our lives have been ever-changed since.

An emergent referral to Kapiolani Medical Center on Oahu was placed and our oncologist called us that same day. We flew my mom out the next day to care for our toddlers in preparation for flying to Oahu for work up. My family was already planning to fly to Maui for Christmas; my sister and dad arrived a few days later and this has been a key in our immediate support. I am very grateful for family and this irony in timing.

We have been back and fourth to Kapiolani for numerous testing and imaging, scans, biopsy and multiple consultations with our Pediatric Oncologist, Dr. Kyono and oncologic surgeon Dr. Woo. We were introduced to the oncologic team, social workers, oncology nurses and ambulatory unit; the staff is exceptional.

Specifics for my medical people:

CT chest/ab/pelvis (12/11) shows 7.5x7x5cm mass to the retroperitoneal left abdomen. It is pressing on the left renal vein causing mild hydronephrosis of the left kidney. Mild infringement on the inferior peduncle (SCr 0.25, BUN5). Close to but not infringing on the Abdominal Aorta, IVC, and Left Common Iliac Artery.

CBC, CMP and UA wnl outside of A/G of 3, consistent with malignancy, and some mild decrease in kidney function.

MRI Brain negative for mets, wnl

MIBG (12/18-12/19) negative for mets

BMAx2 (12/18) negative for mets

Biopsy (12/19) shows (+) neuroblastoma, poor differentiation, favorable histology and equivocal (non-amplified) MYCN (yay!)

Final diagnosis: L2 Intermediate Risk Neuroblastoma Prognosis: very positive, if she remains intermediate risk than >90% survival rate at 5 years.

Prior experience at MD Anderson (a special thanks to my superior Mary Alma PA-C), Dr. Kyono, La's family contacts and the absolutely amazing colleagues and classmates (Elaina, Kourtney, PAMs....) I have in my life have opened up consults with the top pediatric oncologic physicians in the world. We have been in close contact with St. Jude's and Memorial Sloan Kettering; both who have been guiding the case from afar for now and willing to accept Lily into their programs, when ready.

Plan:

Because of her more-favorable prognosis, we have now been in contact for the last two days with Texas Children's. She so far is NOT high risk and this has opened up possibilities for treatment outside of St. Jude's. I now feel comfortable heading to Houston and I think this is our next step. We are still debating resection vs chemotherapy upfront.

Top surgeons at MSK in NYC are presenting her case at the Tumor Board meeting Tuesday 8am EST and will we know their final "second opinion" decision by 9am. Texas Children's will also give input and if resection prior to chemo, this will likely be preformed at Texas Children's.

If chemo is first, we'd like to start our chemo regimen in Houston hopefully by end of next week 1/3/24 but if there is any delay, we will be moving to Oahu initially for her first round (start date 12/31, pending Tumor Board opinion) then once her immune system is up and safe to travel after chemo is completed, we will head to Houston.

We look forward to moving temporarily back to Houston. The amount of support and family is unwavering in Texas and I cannot imagine a better place for Lily. This is pending insurance authorization and likely a lot will be out of pocket due to leaving active coverage in Hawaii. Unfortunately, our family is still recovering from losing all business from the Lahaina fire & she is on dad's state insurance, which she will loose when we leave state. We will apply for Texas Medicaid immediately for transfer of care but there may be delays in coverage, my fear.

Between serious lack of business on Maui and me working 18 hours a week so I can be present at home with our children and run the back-end of our company, this likely could not have happened in a worse financial time. I was planning to increase hours come August with preschool starting for Liam and Lennox.

La has now put our kayak business on hold with hopes we can find someone to run it while we live in Houston, finishing up as many tours as we can prior to leaving but we anticipate thousands in refunds. I have quit both jobs for now but will likely go back on 4-8 hours/week doing consults via telemed for my vascular position in Hawaii, which I am fortunate to have. Between covering mortgage and caretaking of our home and pets in the islands, rent in Houston, food and travel costs for a family of 5, finding a vehicle in Houston, etc... I anticipate the finances will be extremely challenging and deplete our emergency fund (bring it on, this is what it's for!). In order to keep Lily's Medicaid, our household income will likely need to remain quite low.

I would go into a million in debt, a million times over, if it meant saving Lilia's life. Honestly, emotional support for our family is the most important to us but if anyone feels compelled to help us financially get through this, I have created this GoFundMe for donations.

We love our friends and family greatly and want everyone to stay abreast of any changes. I plan to update this page weekly. I encourage you to please follow our journey and continue to stay positive and pray for Lily's health as we go through chemotherapy and please, please pray so hard for a full cure.

Lastly, I'm filled with nothing but gratitude for this journey. I am grateful for her favorable prognosis and catching it early, my family, mom, dad and sister as well as my amazing friends, my education, my healthy boys, Lily's lack of symptoms, stability and strength, our wonderful team of doctors ... and so many things.

We are lucky and blessed in many ways and encourage you not to feel sorry for us. I feel strong, grateful and honored to walk this path with my daughter. What we want most is unwavering confidence and positivity in her full recovery.

No negativity, energy is everything.

It takes a village & we've got a great one <3

Lauren, Lilia, Liam, Lennox, & La