Frequently Asked Questions

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I created Lee T Strong after my HLH and Lymphoma journey to be a source of encouragement and hope to others.

I was originally diagnosed with mononucleosis in November 2021 but it quickly spiraled out of control. Mononucleosis is caused by the Epstein Barr Virus (EBV).  My mono caused bacterial sepsis, fungal sepsis and liver failure and then quickly turned into HLH, and Lymphoma.  

Hemophagocytic lymphohistiocytosis (HLH) is a life-threatening, hyper-inflammatory disorder affecting both newborns and adults. The disease is characterized by dysregulated immune activity resulting in malignant inflammation and multi-organ failure. HLH is difficult to diagnose and even harder to treat because no two cases are alike. In my case the HLH turned into lymphoma in my brain, spine, liver, hips and ribs.

 My lymphoma was Stage 4 non-Hodgkin's diffuse large B-cell lymphoma that permeated all four lobes of my brain, the brain stem, spine and various parts of my body. 

Because I got sick so fast my first course of treatment was to control the HLH with Empalumab (Gamifant) and Rituximab. I also received whole brain and targeted radiation on my brain. After these treatments I started chemotherapy to kill the lymphoma. However, during the course of these treatments I lost 97 pounds and ended up in Neuro ICU for 5 weeks unable to walk or talk. The end goal was for me to receive a Bone Marrow Transplant to get rid of the HLH but I needed to be able to walk and talk and weigh 165 pounds. I spent the next 3 months focusing on my health, nutrition and exercise so that I would be healthy enough for my BMT.

A bone marrow transplant is also called a stem cell transplant. My BMT was on May 24, 2022 and I had an  Allogenic transplant. Stem cells for an allogenic transplant come from another person, called a donor. I do not know who my donor was but I will forever be thankful to him or her for giving me a second chance at life.

I won't know the long term side effects for years. I was on many steroids for a long period of time and often those side effects don't manifest until years later. I did/do have some current side effects: 

NEUROPATHY: My immediate side effects were neuropathy in my right leg causing me to not be able to run, jump or be steady on my feet.

BED SORE:  I also have a bed sore on my sacrum which was a result of so many months of not being able to walk and being confined to the hospital bed. We are working hard to get that to close. 

FERTILITY: Finally, because I got sick so fast, we had to start chemotherapy immediately so I did not have an opportunity to harvest my sperm. There is 99% chance that I am not fertile. But there was also a 99% chance that I would not live so there's that.....

MENTAL HEALTH: There were several weeks that all the medications caused me to go into a manic state. This is also called ICU Delirium and causes mental impairment which lasted several weeks for me. 

Yes, I think setbacks are pretty common with any long medical journey. When I was in ICU my lungs collapsed twice. I ended up being put on a ventilator and eventually a tracheotomy. 

At one point I got pneumonia and had to be admitted back to the ICU until they got it under control. 

During chemotherapy I got Methemoglobinemia (MetHb)which  is a blood disorder where an abnormal amount of methemoglobin is produced. Hemoglobin is the protein in red blood cells (RBCs) that carries and distributes oxygen to the body.  MetHb causes a person's lips, skin, and nails to turn blue. In my case, the methemoglobinemia was drug induced by me using an excessive amount of anbesol to help me with the mouth sores/mucositis from chemo. 

My journey spanned 243 inpatient days in three different hospitals and then a post BMT quarantine of 200 days.