Leila

 

Advocacy Program: Children Urgent Needs (uploaded 11/12/21)

Mother of Only Child in Palliative Cancer Care Needs Help

JJCCF is accepting donations in honor of Leila. If you wish to share your compassionate support, 100% of your donation will go towards assisting Leila and her family with their basic necessities. JJCCF does not charge for its services or take a percentage of funds raised.

Online:  Indicate Dedication / In Honor of Leila
Mail: Kindly make your check payable to “JJCCF” and write “For Leila” in the memo
Address: Jessica June Children’s Cancer Foundation
1 Las Olas Circle, Suite #209
Ft. Lauderdale, FL 33316

Story:

Leila, 10-year-old,  Nicklaus Children’s Hospital

Katherine and her only child, Leila came to Miami from South Africa to get Leila the critical medical care she needed while fighting Ewing’s Sarcoma. Treatment options were limited after the children’s hospital in Johannesburg burned down. Mother and daughter do not have any family here in the U.S. and mother had to resign from her teaching job to care for her daughter full time. Initially treatment was thought to be going well, however, Leila recently relapsed and after many tests, learned the cancer had spread throughout her body. Her treatment now involves chemotherapy to slow down tumor growth and is palliative-focused.  The main goal is for Leila to be pain-free and help her heal sufficiently so she can withstand 20+ hours to travel back home to be surrounded by her beloved dogs, family and friends in comfort and peace.

Needs:

Mother and child need help paying their food and gas for transportation while they remain living in Miami.  Additionally, the family needs to purchase a wheel chair and airfare to South Africa.


Letter from Hospital Social Worker:

Dear Jessica June Children’s Cancer Foundation,
My name is Tiffany Gallart, and I am a hematology/oncology social worker at Nicklaus Children’s Hospital. I am writing to you to first thank you for all your generosity with our patients and to also kindly request your help with our patient Leila. Leila is a 10-year-old girl who was diagnosed with Ewing’s Sarcoma in August 2020. She initially received treatment in her home country of South Africa. She came to us earlier this year with hopes of saving her leg and continue her treatment here. The state hospital she was being treated at back home had very limited options for her care and suffered a fire shortly after Leila arriving in the U.S.

When Leila and her mom arrived to the U.S., it was with just a suitcase of clothes and stuffed animal replicas of her precious dogs from back home. They had one family friend here. Leila’s mom, Katherine, did not let this deter her from doing absolutely everything possible to get Leila the best care out there. Mom spent countless hours researching foundations, making connections, and sharing Leila’s story to make sure Leila could finish her treatment here and leave back to South Africa at the end of the year cancer-free. Unfortunately, we recently learned that Leila has relapsed and her treatment is now palliative-focused. Our main goal is to have Leila pain-free and eventually have her back home surrounded by her family and her beloved pups. While we work towards this goal, Leila’s mom still has an incredible amount of expenses to manage and we would love for her focus to be on keeping Leila happy and stable. Right now, Katherine pays for her car insurance here, meals, and gas but also has to keep up with her mortgage and other household bills back in South Africa. One of her biggest fears is losing their family home because she cannot work while caring for Leila. Katherine would love for her daughter to be able to spend her remaining time in her childhood home, where she has created so many beautiful memories.

We kindly ask that you help Leila’s family in this time of need in any way possible. Our sincerest gratitude for your support and well-wishes for her family.

Kind regards,
Tiffany Gallart, MSW, RCSWI
Pediatric hematology/oncology social worker

Click on the PDF icon to view original letter from the Hospital Social Worker


Plea from Mother:

Dear Jessica June Foundation,
I have been avoiding this as it’s been a hard thing for me to even begin to process but I need to address it and once again reach out and beg for even more love and compassion… Everyone has been so beautifully supportive and generous, and I feel so torn between staying in Miami where we have access to the best medical services or going home… I still wake up every day wishing it was all a bad dream and everything is ok…but it is not. I am waking up every day to a reality that feels like hell on earth.

We should have been done with chemotherapy this week. Leila should have been ringing the bell to mark the end of her treatment and mark the start of her recovery but that is not how it has gone.

We have not left the hospital since our admission on the 12th of September 2021. After many blood cultures, tests, x-rays, bone marrow aspirations and PET scan, the doctors have told me that the cancer has metastasized, and it has exploded in her bone marrow, lungs and spine. On the 28th of September she needed emergency surgery on her spine to decompress the nerves in her spinal column due to surrounding tumors. We are extremely thankful to the team here at Nicklaus Children’s, Specifically Dr. Maggie Fader and Dr. Shelley Wang, whose prompt action saved Leila from becoming a paraplegic and losing control of her bowel and bladder function…

Leila is slowly recovering from the spinal surgery, and the pain management team has been wonderful in addressing her pain and working closely with us to find her some long-lasting relief. She has begun a new chemotherapy treatment and we will need to assess its effectiveness in slowing down the progression of the disease…it may give us some time…if not we will need to discuss what next…I don’t want to wait until the disease progresses to the point where we cannot move her back home.

In spite of the amazing care she has received to date here in Miami, sadly her prognosis is not good and it is time for us to go home. I am devastated.

We have been assigned a stellar Palliative Care team here who are working tirelessly to help us to find comparative health care to manage Leila’s condition back home in Johannesburg. I need to be sure that I will be able to get Leila quality care and even with acquiring medical aid in South Africa, the waiting periods of 12 months and exclusions for pre-existing condition make it pointless.

My goal at the moment is to help Leila heal sufficiently to be able to withstand a 20+ hours to travel back home so that she can be surrounded by her beloved dogs, father, family, friends and find comfort and peace.

In order for this to happen I need so much more help… For us to come home I need to know I will be able to continue to care for Leila and remain by her side 24/7, to do that I need to ensure I have sufficient funds available to pay for the mortgage on my house and living expenses so that I don’t need to find a job immediately, working from home or online may be good future options though and I will remain open to these work opportunities.

I will need to find an orthopedic surgeon and physical therapists for following up on her leg healing, an oncologist and oncology clinic should we find a chemotherapy treatment she is responsive to, a nurse to help us monitor her at home as well as radiologist for scans to determine diseases status…

I am working hard to try and source and address as many of her possible health needs here in the United States before going home, such as acquiring a Sarmiento brace, prescribed by her current orthopedic surgeon, Dr. Thomas Temple, as this will allow her to begin weight bearing on her leg and may help facilitate her ability to walk. She will still need a wheelchair and I hope to be able to purchase one for her that will be easy for her to maneuver and allow us to spend less time stuck at home in bed before we leave.

We have been in contact with Patch – an NGO providing palliative care for children in South Africa, and they have offered us some support in terms of setting up a hospice type situation at home and guiding us through this process…

At this point we don’t know how much time she has left …it could be weeks, months, years? I’d like to believe we have time…but as it stands right now the cancer is non-responsive to chemo thus far and aggressive…I don’t have the luxury of time anymore.

Any and all support will mean the world to me and greatly assist me in making Leila happy and comfortable.

Below is the link to our backabuddy champion page (South African version of a go-fund me). This page was originally started to fund our trip to Miami for her surgery. I never imagined we would be once again needing to use it to get what we have here at home…but being with our loved ones at this time is the driving force to leave while we still can…

All my love and appreciation. Katherine

Leila and her mother