Thank you for visiting Alani's GoFundMe page!

About Alani

Alani is an amazing 9-year-old girl who loves to paint, play video games, and anything involving self-care. She is kind, loving, and a total prankster. Her favorite color is pink. Alani's favorite shows include Hello Kitty, Bluey, Wednesday, Miraculous Ladybug, The Ninja Kids, and anything Disney!

Alani's Diagnosis

Alani was hospitalized over the summer of 2023 with a viral infection. She was diagnosed with Epstein Barr virus (EBV), a common and highly contagious virus that can lead to mononucleosis and, in rare cases, lead to cancer.

Alani recovered from the virus, but not long afterwards, started having infrequent pain in her legs. Over the course of a few short months, the pain became more frequent and intense. By the end of October of 2023, the same month Alani celebrated her 7th birthday, Alani was struggling to walk and stand for extended periods of time.

She was taken to her pediatrician, specialists, and every emergency room in the Las Vegas area. Numerous blood tests, ultrasounds, and x-rays were performed, but the cancer remained elusive and was misdiagnosed each time.

On November 1st, 2023, at yet another emergency room visit, she was admitted to the hospital; her father and I demanded more tests. An MRI was ordered and performed.

The MRI revealed that Alani had developed an Atypical Teratoid/Rhabdoid Tumor (AT/RT) in her spinal cord. The tumor began at the bottom of her spine, growing up through her spinal cord and entangling itself around her nerves. It also burrowed itself in between the bones in her spinal column. AT/RTs are a primary central nervous system (CNS) tumor, meaning it begins in the brain or spinal cord. All AT/RT tumors are classified as grade 4 (also written as grade IV) tumors. This means they are malignant (cancerous) and fast-growing. They often spread to other areas of the central nervous system through cerebrospinal fluid.

Alani's Treatment - Surgery

Upon discovering that Alani was diagnosed with AT/RT, Alani and I were life flighted immediately to Utah, where she underwent surgery to remove the tumor. The surgery was long and taxing on her body. The tumor had damaged mobility and sensory nerves to her left side. It was vascular, meaning it had a good supply of blood flowing to it. Every time they peeled the tumor away, it would bleed. She required several blood transfusions during this operation.

A small piece of the tumor was left behind, as it was in a very difficult place to reach without cutting through bone and damaging her spine. While we allowed her body to recover from the surgery before beginning radiation, that small piece of tumor grew. In 20 days, it grew back to roughly the size of a billiard ball. The neurosurgeons operated on Alani again to remove all of the tumor. Bone from several vertebrae had to be removed in the process. Nerve tests were performed and showed that the damage to her nerves left her unable to feel or move much of her left leg. Radiation was ordered to begin immediately a week after surgery, no later.

Radiation

Alani underwent proton radiation to her brain and spine to target cancer cells flowing in her spinal fluid. She lost her hair, had a port placed in her heart, and experienced radiation burn to her head and back.

She was able to take a one-month break after radiation before beginning chemotherapy.

Chemotherapy

In February of 2024, Alani began a six-month chemotherapy treatment plan. Chemotherapy caused her to lose a lot of weight, lose the rest of her hair, and damaged her hearing. She had a g-tube placed to prevent her from losing more weight, and was given hearing aids so she can hear properly. She was frequently hospitalized throughout the six months due to infections from being immunocompromised or because she needed platelet and whole blood transfusions.

Alani finished chemotherapy and rang the bell on July 14, 2024.

Several follow up MRIs showed that there was no recurrence of the tumor. She was able to take a break from treatment to regain her strength and focus on having a good summer.

She celebrated her 8th birthday by dressing up as Wednesday for her Aadams family themed party.

Recurrence

In November 2024, Alani started to have more nerve pain than usual. Her father and I pushed for an earlier than scheduled MRI. The MRI showed that the cancer had reoccurred. Alani was admitted to the hospital in Utah to have another surgery in December of 2024 to remove it. She spent another Christmas admitted in the hospital away from home.

December 2024

Alani recovered from her surgery, she is scheduled to start proton radiation again out of state. She is working hard with her physical therapist to build up her strength and regain mobility in her legs. She continues to see her teacher at home to keep her mind active and engaged.

January 2025

We are flying to San Diego for proton therapy. We dont know the team or the hospital over there, and we are concerned about lodging. We were told the Ronald McDonald House there is under renovation and might not have room. Also, the Proton facility isnt close to the Ronald McDonald House.

Unfortunately, Alani is still experiencing mysterious fevers. She will be admitted to the children's hospital, where they will perform more tests, including an MRI to find the source.

Complications

Alani had an MRI performed - it showed that she has a cerebral spinal fluid leak. They drew some of the spinal fluid to test it to see if there is an infection. If we discover an infection, the team can target it better with the proper antibiotics. They are also drawing blood labs every day.

Right now, her fever is being controlled, shes staying hydrated with IV fluids, and is receiving IV antibiotics.

We dont know if radiation will continue as planned on Monday, or if it will be postponed.

I wish I had more answers, but for now we just have to wait and see.

Update

Alani's tests continue to show she does not have an infection.

She is still experiencing fevers, vomiting and pain.

The fluid test was confirmed to be spinal fluid, so there's no easy fix.

It's not healing on its own , and it's getting worse. She has a large bulge protruding along her spine.

She is going to have to have another surgery to her spine on Thursday. They will attempt to repair the leak. Radiation is postponed until further notice .

Please keep Alani in your prayers. Shes been feeling sad and is tired of being sick.

Thank you again to everyone who donated. I was able to order a portable fan for when shes having a fever, and some projects for us to do to cheer her up.

Surgery Update

Alani's surgery went very well! She is recovering in the PICU for now. She is not happy about the drains she had placed in her back and head, but we hope they prevent any fluid building up again. She hasn't had any more fever or vomiting episodes , and her pain is being controlled.

Update

Alani is out of the ICU and in a regular hospital room. Shes recovering well from the surgery. All of the drains have been removed! She is able to sit up, crawl, and move around on her own again.

Radiation will start soon.

How Your Donation Helps

Your donation helps Alani's family to purchase out-of-pocket medical supplies, equipment and medication not covered by insurance. It also helps us pay for out of state travel expenses (gas, food, lodging). Some of these things are eventually covered by insurance or private organizations. However, a lot of times these expenses initially have to be paid out of pocket. Then we turn in receipts and proof of treatment to the insurance and wait to be reimbursed. When medications or other supplies get denied, we pay for them out of pocket and have to appeal the denial, and if approved, wait for reimbursement.

Alani developing cancer, becoming permanently disabled and requiring a significant amount of daily care has left me very little time to work. Your support allows me to keep the lights on and primarily focus on Alani's treatment and recovery.

Other Ways You Can Help

Donate Blood/Platelets

Donating blood/platelets saves lives! Donating blood and platelets are life saving for people undergoing chemotherapy, surgery, and other procedures.

Download the American Red Cross App or visit American Red Cross to search for a blood drive in your area.

The app allows you to search for and join blood drives in your area, when you are eligible to donate again, your blood type, and also your donation's journey. Follow along to see your donation go through processing, testing, storage, and lastly, what hospital your blood was sent to. It will also show if your blood was used to save more than one life!

If you do use the app, please be sure to join Alani's Team! Click on the "Impact" tab and search for "Amazing Alani" to join her team. Our team currently has 26 members. We have collectively impacted over 100 lives!

Volunteer

I am glad to have met amazing volunteers and volunteer groups throughout Alani's cancer journey. Here are some of the ways volunteers helped us:

Help With Meals- At the Ronald McDonald House, volunteers came to the House to cook lunch or dinner for the families staying there.

Music Therapy - I have frequently seen musicians play their instruments at hospitals. This was especially magical during Christmas time!

Hair Cuts - At the Ronald McDonald House, hair stylists helped by offering free haircuts that day to anyone interested. Motivation to take care of oneself can definitely go out the window when cancer impacts your family. A hair cut is a wonderful way to make someone feel good again.

Massage Therapy - I have seen massage therapists at the Ronald McDonald house offering a massage to anyone interested.

Meditation / Yoga Classes - Volunteering to host a meditation or yoga class can really help families regulate stress and uplift their spirits.

Arts and Crafts - Volunteers at our hospital's playroom is a lot of fun for the kids! Help them paint, make slime, and other crafts. Volunteers also go around room to room to offer arts and crafts for the kiddos that cannot go to the playroom that day.

Pet Therapy - "Can I pet that dawg?" - Who doesn't get happy when they see a cute doggie? Therapy dogs and their owners are loved by many patients in the hospital. Alani and our family have met many beautiful dogs that make rounds at the hospital and bring everyone joy.

Donate To An Organziation

Although there are many organizations out there, the ones listed below have directly helped Alani, our family, and other children/families with pediatric cancer.

They bring awareness about pediatric cancer, treatment, and offer support. Some go towards childhood cancer research. They directly help children with pediatric cancer and their families by helping to navigate the diagnosis and its challenges, alleviate financial strain, offering a support system with other families, and advocating for the children. They can help with lodging for out of state treatment, paying for a utility bill, issuing a gift card to use for gas or food, reimburse medical expenses, and much more.

Here are some links: