Help Adeline BATTLE against Osteosarcoma.

UPDATE 5/29/2023

Adeline completed her seven plus hour, crucial surgery on Monday 5/15/23. Afterward, she spent four days in ICU and will remain in PCU potentially for up to an additional 10 days due to the multiple chest drains. Her surgeons described her surgery as a "radical reconstruction" that involved the removal of four whole ribs and three partial ribs, which were then reconstructed with titanium replacement ribs. There were more than 20 tumors on her right lung and in her pleural sac which resulted in 30+% of her lung being removed. Multiple lymph nodes were removed, including the precariously positioned lymph node in the middle of her chest wall between her lungs and heart. The right phrenic nerve and 20-25% of her right diaphragm were removed. The thoracic surgeon was able to remove muscle from a donor site and relocate it to rebuild and protect her rib cage.

Although both surgeons felt very confident that they were able to remove all of the visible "gross" disease, there may still be microscopic cancer that cannot be seen. During the post surgery consultation, the orthopedic surgeon expressed that she will have an extensive recovery with this surgery and with the next 18 rounds of chemotherapy/radiation as determined by her oncologist who is awaiting pathology reports. The thoracic surgeon explained that Adeline's breathing capacity has been permanently altered, and this could necessitate physical or breathing therapy. Further, Adeline will require regular scans for the next 3 years. Valerie asked, "Why would scans only be required for three years, especially with the high recurrence rate of Osteosarcoma?" The surgeon explained that Osteosarcoma often recurs within the first 2-3 years after completing treatment. However, insurance only covers scans for up to 3yrs. The surgeon suggested that if Osteosarcoma were affecting their own family member, they would continue annual or biannual scans for up to 10yrs. Barry and Valerie intend to ensure Adeline receives scans for as long as necessary. Adeline will return home after she is well enough to be released from the hospital. Her Doctors want her to recover enough before resuming chemo, which could be at least another 4wks.

Thank you to everyone who has supported our family with prayers, time, kind thoughts, and donations. I know Barry and Valerie would not be able to work and care for Adeline without the incredible show of support they have received thus far. We are forever grateful!!

ADELINE’S STORY

Our family’s world came to a screeching halt on January 24th, 2023 and life as we had come to know it, ceased to exist. My 20 year old niece, Adeline Robb, was diagnosed with a very aggressive bone cancer called Osteosarcoma. The cancer was found on her ribs and has also spread to her chest lymph nodes, her right lung and lung pleural sac. Understandably, her parents Valerie & Barry, her older sister Delaney and Adeline’s entire family are devastated. I have watched these two sisters grow up from infants to young adults and love them as my own. I am deeply heartbroken for my sister/best friend Valerie and her husband Barry, the brother I never had.

Since Adeline’s cancer diagnosis, Valerie and Barry have been completely focused on her treatment. As her primary caregivers, this has greatly impacted their ability to work due to lost days/hours and the inevitable loss of income. These dedicated parents are working opposite schedules in order to spend days and overnight stays with Adeline at the hospital, comforting her at her bedside and for emotional comfort. This has been compounded by Adeline not being able to work due to the endless hospitalizations, chemo and side effects.

We are raising funds to allow Valerie, Barry and Delaney the ability to give Adeline the best possible care during this long and scary journey! Your help is deeply appreciated by everyone who loves this whole family!

written by Toni Howard, Adeline’s loving Aunt.

Read more about Adeline and her incredible journey:

Adeline is an absolutely lovely, hard-working young lady who deeply values kindness, love, integrity, generosity and fairness. Friendship and family are incredibly important to her. Her spirit radiates the most beautiful warmth. She is an old soul who loves art, jazz, classic cars, delicious meals shared with family or friends and evenings at the beach. Before being diagnosed, Adeline graduated from high school early with honors from Florida Virtual School. She was finding her way as a hard-working, young adult who held as many as three jobs at a time. Challenged by generalized anxiety, she was pushing herself to succeed on her own as an independent adult. She lived on her own for a year, sharing a starter apartment with roommates. Recently, she was so excited to have finally connected with a new best friend through her job, someone with whom she shared likes and hobbies. They decided to move in together and found a way to share an apartment. Only a week after moving, Adeline was diagnosed with cancer. Their plans of staying up late, going out with friends and all the fun things that 20 year olds like to do, were immediately stifled by shock and sadness.

For anyone who has received a cancer diagnosis themselves or for that of a loved one, you truly understand what this means. Not only must you navigate a wide range of emotions, you are immediately transported into survival mode. Your entire life can become chaotic beyond imagination. Once you move beyond shock and disbelief, you begin rearranging your lives to not only take care of your loved one, but you are also faced with scheduling the endless medical appointments, tests, scans and treatments. But this is still only part of it, as rarely do treatments go as planned.

Adeline’s first experience in the hospital was terrifying for her. She never wanted her parents to leave her side. First, was the surgery to install the port for administering chemotherapy. Next, Adeline endured a thoracentesis of her pleural sac, which was excruciating for her. Both of her parents held her hands as a pulmonologist inserted a long needle in her lung sac through her back and drained away nearly two liters of fluid. Adeline tried to catch her breath as she coughed, cried and gasped for air. Valerie and Barry said it was the worst thing they ever had to go through with their child thus far. Most of her chemo treatments consist of a minimum of five days of hospitalization, with barely a day or two in between before she starts her next chemo round with another hospital stay. She has so far suffered most, if not all of the associated complications of intense chemotherapy, which has also resulted in unscheduled, additional ER hospitalizations. She has and continues to endure nausea with vomiting, diarrhea, bloody noses, fevers, loss of appetite and weight, extreme fatigue and exhaustion, severe bone pain and most recently, thrush. For anyone that has not experienced thrush, it can also painfully travel through your gastrointestinal system. Besides the thoracentesis, thrush has been the most painful complication by far, necessitating the need for heavy pain medication (both morphine and dilaudid), a catheter and an IV for a nutrition feed for a week. She was unable to speak for three days due to the incredibly painful mouth sores, and could not eat or drink for nearly the entire hospital stay. Due to her last emergency which hospitalized her for another week, her oncologist decided to forgo week ten chemo treatment in order to allow her body to fully recover before surgery. During this upcoming complex tumor removal surgery, Adeline will need an orthopedic oncological surgeon to remove three ribs and surrounding tissues, a thoracic surgeon to remove tumors from the lungs, pleural sac and lymph nodes in the chest wall between her heart and lungs, and further, a reconstructive plastic surgeon to help restructure muscle around her ribcage where the ribs will be removed. Bringing a plastic surgeon on board is not for cosmetic purposes, rather it will be to take muscle from another area to provide protection for her rib cage. This new muscle tissue will further support the skin above it to promote and ensure proper healing.

Since Adeline’s cancer diagnosis, Valerie and Barry have been completely focused on her treatment. As her primary caregivers, this has greatly impacted their ability to work due to lost days/hours and the inevitable loss of income. These dedicated parents are working opposite schedules in order to spend days and overnight stays with Adeline at the hospital, comforting her at her bedside and for emotional comfort. This has been compounded by Adeline not being able to work due to the endless hospitalizations, chemo and side effects. She has recently made the decision to move back in with her parents. Of course, this has been heartbreaking for Adeline - not being able to live with her best friend, but she feels comforted that she will be cared for by her parents at “home” through her surgical recovery and through her remaining treatments.

God willing, Adeline will not only survive but thrive once again. In reality, Osteosarcoma is challenging to treat and yields a higher recurrence. The fear and uncertainty of “if or when” it could recur is a terrifying possibility. Thinking of Adeline enduring this again is difficult enough, but the concern of the financial burden that Adeline will be faced with is even more daunting. Valerie and Barry want to do everything they can to secure funds so that her hospital bills can be paid and to make sure she can be properly taken care of when she can’t work through additional chemo treatments and/or surgeries.

No one should ever go through this kind of life-shattering experience alone because it literally takes a “village” for a patient and their family to survive something of this magnitude. Valerie and Barry are beyond grateful for all the love, support and prayers that all our friends, family, colleagues and clients have bestowed upon our family during this very difficult period in our lives. Please know that while you are considering donating, the unfortunate truth is that cancer will affect someone you know and love at some point in your life. Not all experiences will be the same, but all are life changing in some way. Please open up your heart to those people affected by cancer as they are in the middle of a whirlwind that slows down and speeds up without any notice.

Thank you so much for taking the time to read about my niece Adeline and her struggles during this very challenging time in her life. I know firsthand through my sister Valerie and my brother-in-law Barry, the challenges that they themselves endure while watching their daughter Adeline suffer. She is immensely loved and so very adored by her family that we can’t imagine life without her. We ask for prayers that she not only beats this but can have a quality of life that has been halted so profoundly. God bless you and your families❤️❤️❤️❤️