David’s Brave Battle Against Refractory Burkitt Lymphoma
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After several visits to the Emergency Department of our community Hospital in South County RI and following up with his primary physician twice, being sent home with no tests or answers for my son I ended up bringing David to my own doctor and going back to the Emergency Department on January 11, 2025.
My 20 year old son David had been experiencing episodes of pneumomediastinum (air outside the lungs) since May 11th 2024 that was not resolving or even getting slightly better. Every time he ate he was in intractable pain in his abdomen and the frequency of his severe discomfort had him on the floor of his bedroom hunched over with a pillow pressed against his chest and abdomen. At its worst this went on from the time we went to the ER on November 26th until we returned 1/11/25.
He wasn’t able to eat, because it resulted in pain and he was not able to sleep due to how bad the pain was.
January 11th he was diagnosed with Lymphoma but they weren’t sure which kind. After being transferred to Providence we found out that it was Stage 4 Non Hodgkins Burkitt Lymphoma. Burkitt Lymphoma is the most rare and aggressive type of B Cell Lymphoma there is, doubling every 25 hours.
At the time of his lymphoma diagnosis we knew we had to get David to Rhode Island Hospital with no time to spare and establish a chemo regimen immediately or his condition would lead to fatality in just a matter of days. He did not have time to wait.
He was admitted to Rhode Island Hospital right away and his care team there ran a wide array of tests to be sure that it was Burkitt Lymphoma and not Large Diffuse B Cell Lymphoma. They needed to be sure they had the perfect treatment plan for him to achieve maximum success and overall survival which was the ultimate desired outcome. Upon admission to the Oncology/Hematology Unit he had scans done, labs, a lumbar puncture and a bone marrow biopsy immediately. They had to test his central nervous system to be sure that it hadn’t spread to his brain, his cerebral spinal fluid or his bone marrow. At the time of his admission, he presented with one cell in his spinal fluid and there was no bone marrow involvement. Going forward every time they would remove spinal fluid to test it, they would insert chemo into his spinal canal to protect his brain and cerebral spinal fluid. January 15th he had his PICC line placed. The months that followed consisted of very intense chemotherapy, high neutropenic fevers and low blood counts. David just spent the last four months courageously battling through four rounds of the most aggressive chemotherapy there is. R-CODOX-M and R-IVAC with Intrathecal Chemotherapy to protect his brain and his cerebral spinal fluid. The only spinal tap that presented with CNS involvement was the first draw. He had one cell present and they got it. Never to return throughout the entire treatment.
The R-CODOX-M which was Round 1 and Round 3 consisted of Vincristine, Cyclophosphamide, Doxirubicin, Ifosfamide, Etoposide,
and high dose Cytarabine
(With Rituximab and Methotrexate)
R-IVAC consisted of Ifosfamide, Etoposide, and High Dose Cytarabine along with the Rituximab and Methotrexate.
David has tackled five neutropenic events, endured 7 Lumbar Punctures, A Bone Marrow Biopsy, 9 Blood Transfusions, and 7 Platelet Transfusions along with suffering permanent damage to the photo receptors in the retina of his eye. David’s care team was very confident that by Mid April there would be no evidence of lymphoma as the chemotherapy regimen he was on has an 80-90% success rate with a very low incident of ever reoccurring. They explained throughout the course of his diagnosis and treatment that “if you were ever to get cancer, this would be the one you would want to get”. That “it would be like a bad dream and a distant memory when we looked back on this time in our lives”. It was explained to us that Burkitt Lymphoma, because it is so aggressive made it easier to eradicate. We knew it wouldn’t be easy but we also knew there was no other option than to fight and to run this marathon, and everything would be okay.
With a smile on his face every single day, all the hope, faith and dedication in the world- David showed up for all of his treatments with no delays. He was hospitalized for Round 1, Round 2, and Round 4. Round 3 he was able to do outpatient in East Greenwich. He never missed a day, he went to every doctors appointment and followed the instructions given to him to the letter. David did this all the while never complaining and with more dignity, integrity, strength and grace than I have ever witnessed in all my life. His mindset has been that of - there was no time for crying or feeling sorry for himself because it would not do him any good and the best way to get through cancer was to tackle it head on with no room for self pity or negativity. That is exactly what he did. He faced every single day, every single obstacle, and every single set back with acceptance, patience, and determination.
While knowing life is unpredictable in times like these and staying realistic with ourselves we were all prepared for the best outcome and David has been nothing but prepared to put this journey behind him and go back to college next semester. While hospitalized in March, he had a CT scan of his chest done and there was no evidence of lymphoma on the images. The night before his Pet Scan he had enrolled back for fall/winter 2025-26 and picked out all his classes as his last semester had to be put on hold so he could utilize all of his energy and strength to take this cancer down.
Monday April 21st David went in for his Pet Scan. Wednesday April 23rd we met with David’s oncologist and it was then we found out that the cancer David has is resistant to chemotherapy. We found out that some areas first noted were gone, but the main site is still active and the chemo didn’t work. His cancer is resistant to chemotherapy. There are now new areas that have presented inside his body. This is no longer just Burkitt Lymphoma it is, Refractory Burkitt Lymphoma.
The prognosis for Refractory Burkitt Lymphoma is very poor, ranging from less than 10% to 30–40%, with longer survival only in transplanted patients.
This was not the news we expected at all and now changes the course of everything. We are in survival mode and at this point I and my family are willing and ready to do anything to save David’s life.
On the 23rd when we met with David’s Oncologist at Rhode Island Hospital he had already been in touch with the Oncology team in Boston overnight and had a care team set up for him before we even stepped foot into his appointment that day. He asked us if we could be in Boston the very next day, Thursday April 24th. We said of course, absolutely. We will be there. David was seen at Mass General Hospital and was told the next course of action is CAR-T Cell Therapy and A Bone Marrow Transplant.
CAR-T therapy with a bone marrow transplant and bi-specific antibodies are the only courses of action at this point as chemotherapy has proven it will no longer be effective for him.
David was admitted to MGH the day before yesterday April 24th, he had a port inserted into his jugular and had his T Cells extracted. They were sent off yesterday April 25th to be modified specifically for CD19 in hopes that his own T Cells can be trained to fight the exact cancer he has. T Cells are fighter cells that attack any foreign or unknown enemy in the body.
This therapy is our greatest hope for remission right now.
He is home now with me and will start chemo again Monday at RIH in the interim to lower his tumor burden and keep him alive while the T Cells are harvested for him. Although the chemotherapy can’t cure his Burkitts like originally expected by his care team who we adore and are so thankful for, it can save him from mortality in the interim while they prepare the fighter cells.
The expected date the T Cells will arrive back in Boston is May 13th. He is scheduled for a Pet Scan on the 9th and he will start on Lymphoma Depleting Chemo May 15th and 16th. He will then be admitted onto the cancer unit May 18th and his T Cells will be placed back into his body on May 19th.
David will be in the hospital for several weeks for CAR-T therapy and when he is discharged he has to stay within 30 minutes of the hospital for a month (30 days) in the event of an emergency. Because of the high risk of reactions he has to have someone with him 24/7 and will require around the clock support to make sure that he does not develop serious or life-threatening side effects such as
•Cytokine release syndrome (CRS)
High fever and chills
Trouble breathing
Severe nausea, vomiting, and/or diarrhea
Feeling dizzy or lightheaded
Headaches
Fast heartbeat
Feeling very tired
Muscle and/or joint pain
•Immune Effector Cell-Associated Neurotoxicity Syndrome (ICANS)
Headaches
Changes in consciousness
Confusion or agitation
Seizures
Shaking or twitching (tremors)
Trouble speaking and understanding
Loss of balance
Limited To No Mobility
And number of other serious side effects.
I will link the information below if you would like to learn more about what CAR-T therapy is, and how it can affect someone receiving this treatment.
I will be with David everyday as I have been but normally when he was in Providence I would come home at night to sleep and go back to the Hopsital every morning. Now being so far from home I’ll be staying in a hotel while David receives this treatment and when he is released several weeks later he will stay there with me for 30 days until he gets the all clear that he can leave the Boston area.
It took a lot for me to write all of this, to come here to this platform and create this because I wanted to be able to say we got through this just fine and we didn’t need to ask for any help at all. None of this we were prepared for. These results are shocking for David, and for our family. I have been bargaining with myself over making this gofundme since I found out on Wednesday what was to be ahead of us. We got through the first four months without asking for or needing anything that I and my immediate family couldn’t handle. I thought I could pull this off, but it just isn’t realistic.
This time we will be much farther from home and a hotel in the city will be our home until the first week of July.
So long as there are no complications and everything goes according to plan.
So much is unknown.
I am a mother desperately trying to keep everything in tact while my most important priority is David. I have tunnel vision set on him and his care, his healing and keeping him safe and here with us. I have created this because I need to provide for my son while he faces another several month long battle at war against a cancer that the most intensive and aggressive chemo couldn’t kill.
David explains it as “you know when someone gets shot in a movie 20 times but they get right back up? That’s Burkitts”
I thought I knew what it was like to fight cancer.
I have lost loved ones, friends and I have cared for people with cancer throughout my life when I worked in the medical field. But I had no idea. None. Unless you are going through it it is unfathomable. Being in this is a roller coaster that you can not get off. I thought I knew, but I had no idea what this was like. There is nothing that can prepare you for something like this. Especially with your own child.
I don’t expect anyone to give, because I know the financial burden of life is heavy for everyone. But I have hope for all things right now to save my son’s life and make sure he has everything that he needs. So it is absolutely worth trying. David is worth trying everything.
I would do anything for my beautiful, brave and courageous son.
David brakes and swerves for squirrels. He wouldn’t hurt a fly.
He is so gentle and so kind. The least deserving person on this Earth to have to be faced with this at all, but certainly not a relapse within 4 weeks. I am heartbroken.
As we sat here for four weeks waiting for his PET scan, the lymphoma was growing back with a vengeance.
It is causing him excruciating pain at the lymphoma sites, so we know it is rapidly growing again which is so dangerous.
Devastated, Heartbroken, Helpless because I can’t heal him or fix this - these are all understatements.
My friend Kait said, if you can remove the everyday stressors out of the way it can affect the outcome in a positive way for David. It made so much sense.
All this time…from January to April I have been too stubborn to create one of these. But it’s time, now.
David is a warrior at battle and I couldn’t be more honored and proud to walk beside him as his Mom. I look forward to the day that I can hear his testimony when this is over and he looks back on this and realizes that statistics and numbers are just that.
There is no one person just like David in this world. The numbers don’t matter because David isn’t a number. He is a fighter and I believe in him.
We will stop at nothing to do whatever it takes - For David
And if you aren’t able to help, I understand completely. My only request is that you pray for him as he enters this next phase. For the T Cells to work for him. For the odds to be in his favor for complete healing and restoration of his health and well-being. For him to survive this and cover him in protection and comfort.
Thank you if you have read this and are praying for and supporting David to Battle Against Refractory Burkitt Lymphoma
#BeBraveLikeDavid
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About CAR-T Therapy
Organizer
Tiffany Adams
Organizer
Westerly, RI