Muca Family Fund-Luli’s Brain Cancer Battle

Melissa and Klodjan Muca is organizing this fundraiser.

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Luljeta (Luli) was named after her Klod’s aunt, and she is the true definition of her Albanian name, which is: Flower of Life. Her smile is contagious, her spirit is bright and her love is limitless. She’s the happiest, most caring big sister and truly, the light of my life. On July 11th, we were admitted to Children’s Hospital Los Angeles after an emergency room CT scan showed she had a large brain tumor.

Around April 2022, Luli was experiencing weight loss, episodes of vomiting along with headaches and generally more lethargic. We had regularly been seeing her pediatrician for these symptoms, monitoring the weight loss, starting behavioral therapy, meeting with nutritionist and lastly a GI specialist. We knew something wasn’t right, and we’re going through the motions with the doctors, but she wasn’t improving. Friday July 8th, we had our consultation with the GI Doctor and after explaining everything Luli was experiencing, he recommended we get a brain MRI. I was shocked and confused - why would a “stomach” doctor recommend a brain MRI? What is he looking for? That weekend Luli got very sick and these questions kept running through my mind. On the morning of July 11th, her weekend sickness had become severe with a headache that radiated to her eyes. We knew we needed to take her to the emergency room and decided Children’s hospital was the best place to head. Just four weeks prior Luli was performing onstage in a Hip-Hop Dance recital - how did she get so sick, so fast?

In the emergency room we were asked about a hundred questions about her symptoms, her health and eventually about 4 pages of questions specifically about the headaches. This all resulted in a brain CT that showed Luli had a brain tumor.

I wish I could say those first days were a blur, but honestly we all remember them crisply. We remember our first day nurse (Marbeth) and our first night nurse (Alicia) - both who remain two of Luli’s favorite people in the hospital.

She had her first brain surgery on 7/21, where they only performed a biopsy as initial pathology in the operating room gave them an indication this was Lymphoma. While recovering in the PICU, additional pathology came in, contradicting that initial diagnosis and confirming it is actually ATRT, a very rare and aggressive brain cancer. She was immediately scheduled for surgery again on 7/25 with the intent to remove as much as possible of the tumor. Surgery was an overall success, and we are forever thankful for the neurosurgery team here. It was a large tumor and difficult to remove, slightly attached to some of her healthy brain tissue which resulted in her waking up from surgery with left side paralysis, short term memory loss and speech delays. They prepared us for these potential outcomes, but you truly can never be prepared to see your child struggling in this way….. So lost from the bright, energetic soul they were. On 8/8, Luli had her third brain surgery that was intended to “clean out” some of the remaining blood and blood clots as a result of her surgery, as the pressure and flow of her brain fluid (CSF) wasn’t normalizing. While performing this surgery, one of the blood clots had attached itself to a second, smaller tumor that had grown in the weeks since her primary tumor removal. They were able to remove as much as possible of this tumor while performing the “cleaning”. While this surgery went well, it didn't resolve the pressure issues she was experiencing in her brain post-tumor removal, so her fourth surgery was scheduled to place a VP Shunt.

She was so patient and optimistic in recovering from all her surgeries, regaining strength in her left side and slowly improving her short term memory, day by day.

We started her first “induction” chemotherapy cycles on 8/15. She had two grueling cycles that resulted in severe nausea, fatigue and mucositis. She was so sick throughout these cycles, in high amounts of pain due to the mucositis and mouth sores from the chemo. We were mostly in the hospital for these two cycles that occurred over about a month. At this point, her hair was also starting to slowly fall out in patches as a result of the chemo.

We were able to go home for a few days just after her birthday, where she had a magical time celebrating her 11th birthday with her cousin Gabby. Little cuddles and love from her new puppy Biscuit and family was overdue. Unfortunately, our stay at home was limited and we prepared to re-admit on September 15th for her first of three high dose chemo cycles with stem cell transplant.

September 15th - January 15th we were mostly in the hospital going through her high dose chemo and transplants. We were able to go home for 2 days in between each cycle and while that was so brief, any time together in the comfort of our home is amazing. We’d maximize those two days together and get as much fresh air, fun and smiles in as possible. We are grateful for all of the family and friends that came to see us and support us over these difficult months.

Knowing that we’d be hospitalized during that time, and expecting daily radiation appointments and potentially in patient physical therapy rehab following radiation - we made the decision to temporarily move closer to the hospital. We are grateful for friends here that helped us find a place quickly and is within 1 mile of the hospital. This has allowed Klod to visit not just regularly, but everyday, several times a day; he’s able to bring meals for us and I can every once in awhile run home to spend an hour or two with Adhurim.

These rounds of chemo were grueling, with the effects compounding every cycle and ultimately making it very difficult for her to recover and stabilize for us to go home at this point. We both unfortunately also got COVID in November, and while Luli did not have any severe symptoms, it was a difficult and exhausting set of weeks to manage through her chemo and COVID simultaneously. Isolation as a result of the COVID was also incredibly difficult for both of us. Her nausea, fatigue, recurring mucositis, aches and pains from the chemo are the worst. At the end of this last cycle she also suffered a small brain bleed, increased memory loss, increased hearing loss and we were also on high alert of kidney and liver function issues for quite awhile. All of these have mostly resolved and we are on a positive path forward.

As of today (January 27, 2023), we are still in the hospital and going on our 46th straight day here. Our second longest stretch. Day by day she is growing stronger, feeling better and letting that spunky, sarcastic personality shine.

Luli starts radiation on Monday, January 30th and we have planned for 6 weeks of daily treatments. We are hopeful we can eventually do these treatments “out-patient”, but know we’ll be here next week as we get started. We’ll continue to provide updates here as well as on social media as we continue this battle and recovery.

Over the last several months we have been grateful for all of the love, support and generosity from so many of you. Surprise presents in the mail, gift cards and traveling to see us. Although, the shock of Luli’s brain cancer diagnosis may never wear off, we are starting to better understand the journey ahead for our family. We are trying to plan how we can best support Luli, as well as her little brother Adhurim, without these new, additional financial stressors.

It's not in our nature to ask for help and I have to admit that even starting this page has been very difficult. I’ve accepted that I can’t do it all, I can’t always figure it out myself, and I need to be open to allow this amazing network of we have to step in and support us however you can.

We have outlined several ways we will use this financial support, but at the end of the day, we just want to make sure we can give Luli the brightest, happiest days, filled with love and special moments. Support from this fundraiser will help alleviate the stress of this financial burden, and allow Klod and I to spend more time with Luli every day.

Medical Costs: Insurance is great, but we still expect many out-of-pocket expenses that we have paid and expect to pay. We will need to pay for any services not covered by insurance, co-payments, deductibles, and prescriptions. We ultimately paid our out of pocket max in 2023 ($8,000), will need to pay that again this year (2023) and potentially in 2024, which is about $24,000.
Living Expenses: The commute to the hospital is ~50 miles (round trip) from our other house and Klod was making that trip daily. While we live closer now, in a small duplex, Klod does still have to make that trip often to clean our other home in between Airbnb guests. Airbnb has helped us cover some of our mortgage costs, but so far most months we haven’t been “fully booked” and we need to cover our mortgage and rent. The cost of rent is nothing short of shocking and is higher since we are “in the city” vs the suburbs; our rent for the 1 year lease we have will be close to $45,000. While we absolutely love the daycare we’ve found for Adhurim in the area, we are paying $5,000 more a year than we were at our other house due to the increased costs in the city and lack of options in the area.
Meals: Hospital food isn’t the worst, but it’s surely not the best. It’s so important that Luli eats well, regains her weight and keeps her body strong throughout these treatments. We often have to order meals to the hospital or do weekly grocery runs for the snacks and food we can warm up in the microwave here. Over the last 6 months we’ve easily spent ~$5,000 on food JUST for us in the hospital (we obviously have to feed Adi at home too). Sounds like a lot, but it boils down to about $200 a week, which is like a basic grocery run + 2 days of getting restaurant delivery, and basic coffee for myself most days (it’s not like I can even put a coffee machine in my room).
Wig: Luli’s treatment plan includes chemotherapy and radiation. Chemotherapy and radiation hair loss is temporary, but with radiation it can sometimes takes months before the hair even starts to regrow again. We want her to continue to feel beautiful and confident during and after treatment. I’m sure she will want some fun and bright “play” wigs, but a good quality, real hair wig will be needed for longer term use.
Family Retreat: Although we are living in the moment and can’t plan very far ahead, we have faith, remain optimistic and would like to plan a family retreat at the end of her treatment, to celebrate her long and hard battle against cancer. This may sound frivolous, but understand that over the last 6.5 months (and counting), we have only spent ~5 days a month at home, together as a family. In the beginning, our home was too far for me to go home to see Adhurim and I went almost 60 days straight without seeing him. Klod was only able to visit a few hours a day due to the drive and LA traffic. Even living closer now, I sometimes go weeks without going home because Luli is feeling so sick she doesn’t want me to leave her bedside. Then when we are together most of our conversations, thoughts and moments are consumed with talk about cancer and Luli’s health. Having time put aside to just be together as a family, bond, emotionally recover - maybe even have some FUN - and breathe in our next chapter of life together, will be crucial for our family healing.

More importantly, we are people of faith and if supporting us financially is not an option, we understand and are also asking for continuous prayers for complete restoration of health to Luli.

In faith, love and strength – we thank you all. <3 Klodjan, Melissa, Luljeta and Adhurim