I was diagnosed on August 2nd, 1993 with Non-Hodgekins Burkitt’s Lymphoma. I was about to hit eighteen months old on the 25th. My diagnosis went like this: My grandmother babysat me on a regular basis, and noticed that I had become lethargic and had trouble breathing. She forced my mother into taking me to a pediatrician. The pediatrician took a quick look, and told my mother “She’s fine. Probably just a flu.” However, my mother knew otherwise and wasn’t leaving without an explanation on what was wrong. She refused to leave until I had another check. Sure enough, I was sent to Sick Kids Hospital (Toronto). The cancer at that point was in my lymph nodes, tonsils, and had spread to my right kidney. I fought the Burkitt’s for about a year. I’m fortunate that I was too young to remember it. I grew up with (and still take) constant tests. Cancer has partially been a gift to me in the sense that it made me more compassionate towards other people. It’s given my life a bit more meaning, as well. As horrible as the disease can be, there’s always a light at the end of the tunnel. What doesn’t kill you may not make you stronger, but it will certainly change you for the better by giving you a better understanding of your importance in the world, and how important family and friends are. I hope this gives people suffering from any disease, for another or for themselves hope. Don’t take the people around you and yourself for granted.
My name is Taylor Batson. In Oct. 1992, I was diagnosed with Burkitts Lymphoma at the young age of one and half years old. Oddly, after a large bout with strep throat. My family flew me to St. Louis Children’s Hospital for diagnosis and treatment. That act alone saved my life. My cancer caused my parents to loose our family health insurance. My mom was able to speak with Hillary Clinton as to the problems surrounding cancer patients and their families. This world was new to both our family. The staff at the hospital were awesome they became our second family. There were a couple of us with Burkitts. The diagnosis caused the staff to advise us of the grave situation at hand and that they were never sure if this was going to be manageable or not. At one point they asked my parents to consider making funeral arrangements in case. The treatment was as painful as the disease and we all suffered as a result. In Feb. 1993 I went ended treatment and we waited. The cancer was so aggressive it might return. Leukemia was also in the background waiting to rear its’ ugly head, as it does with other cancers. We waited. After five years in remission I was considered cancer free. Getting health insurance on me was not going to happen at that time. It was just a nightmare for my parents to grasp. But I am a healthy athletic 21 year old male. To this day, I have only video and pictures as I do not remember any of it. My mom has stories. Wonderful ones. Ones that are just short of tiny miracles adding up to this big one = my life. St. Louis Children’s Hospital and Washington University-an incredible teaching hospital are the ones who kept tweaking the treatment no matter the cost have my full gratitude and admiration. But the most praise goes to my parents who also had four other children to have to raise while going thru this together. So we are all cancer survivors as no one goes thru this alone. It takes a village.
Taylor’s News Paper article from when he was just 2 years old
This story is not about me but rather my sister, Roberta or Robbie, as she’s known to most. It all started in February when she noticed a mass in right submandibular area. She went to the dr and was treated for a salivary gland infection. When it didn’t resolve, she called me and asked what I knew about salivary gland infections. I work for an ENT and know all too much about these sort of infections. My dr was out of town so we had to wait a whole week before seeing her in office. This was the longest week of my life!! We did the first biopsy of her lymph node in office and waited another incredibly long 3 days. The first pathology report came back as an inflammatory process and we treated once more with antibiotics. I checked in on her daily. She was hopeful that the antibiotics were doing their job. And they would have had it been an infection. Her lymph node was unchanged so we ordered a second biopsy. After another week and a half, we had our diagnoses of Burkitt’s’. My sister was very confused because she has always been a very healthy person and didn’t feel sick prior to her being diagnosed. She went and met her oncologist and the people she would get to know very well over the next several months. She has maintained her courage, strength and spirit like a champion. Like an athlete training for a marathon. She has just recently finished her fourth and hopefully her last cycle of chemotherapy last week. She sports a wig or a wrap on some days. She also likes to feel the wind on her bald scalp. She looks forward to having a haircut and getting highlights. So do her two daughters who have been her biggest cheerleaders. They have been just as strong as their Mom through this experience. My sister deals with most, if not ALL the side effects they warn you about at the beginning of treatment. She doesn’t like to complain….much! Ha! She puts on her makeup almost everyday and goes to work most days. She has a spirit about her and looks forward to the day when she can look back and this be a distant memory for her. She has an excellent prognosis! No other activity on her last PET/CT. We’ll take that kind of news any day. I have learned many life lessons from watching her battle this disease. She didn’t want pity, she didn’t want tears, she didn’t want people to look at her like she had cancer. She wanted everything to be normal. But I think she did all of that, for all of us! She has had her catheter removed and has only a few scars on her upper chest. These are her battle scars. My sister is one of the lucky ones. Isn’t that an ironic statement….most people would consider cancer unlucky but we know God never gives us more than we can handle and He definitely carried her on this journey. God is great. My sister is pretty awesome too. Congratulations to my sister! This is her victory.
My son, Joshua, was 12 years old when his battle with Burkitts began. This healthy, normal pre-teen began to get sick. First it was the strep-like infection. Then it was the constant nausea. The weight loss. The decrease in activity. Joshua one day began complaining of excruciating pain in his teeth. We did the doctors, the dentists, the bloodwork, the MRIs, the infection control specialists…. all with no results. No one could figure out what was wrong with him. This was the worst time. Joshua missed a month of school during this time period and lost twenty pounds. We were pulling our hair out in desperation.
Finally, on March 9, 2011, Joshua doubled over with stomach pain. After a long, miserable night, I took him to our local pediatric emergency room. We were there for twelve hours. Even though his WBC count was unbelievably high, the doctors couldn’t figure out what was wrong. Xrays didn’t show much except for a little fluid in his abdomen. We were told that perhaps it was his appendix, or maybe kidney stones. I tried telling the ER doctor about the month he had had, but we were told that it wasn’t relevant and perhaps Joshua was just under stress.
One wise resident decided to order a CTscan. A half hour later we were told that Joshua had two grapefruit-sized tumors in his abdomen and would be taken immediately to the pediatric oncology unit. We were told that he had either Stage IV lymphoma or leukemia. Turns out he had Burkitts Leukemia (just like Burkitts lymphoma except his bone marrow was riddled with the cancer).
That first week was hard. He was started on chemo right away and suffered terrible tumor lysis. His whole body froze from the lack of calcium, his kidneys were failing, and we were warned to expect a seizure. Thankfully that never happened.
Joshua spent most of the first four months in the hospital between the chemo and the infections. Morphine became our friend. But the end was in sight! Joshua was scheduled to have a total of nine chemo rounds and by the end of the 7th, and solidly in remission, he was starting to feel a bit normal again.
Then, out of the blue in August 2011, he got a headache. Usually that meant that he needed a blood transfusion, but his counts were fine. We were told to give him a stiff cup of coffee! But three days later, with no relief, Joshua told us that something was wrong and he needed to go to the emergency room.
The cancer was back. This time in his CNS. The hospital called in an off-duty OR team to do his bone marrow and spinal fluid tests. Joshua began having seizure-like activity, his face became paralyzed, and he had an abnormal EEG. We were told that he may not make it through the weekend.
Well, he did! We were told that there was no protocol to treat him, and that we should consider palliative care. But our wonderful doctors found five other children from around the world whose cases mirrored Joshua’s, and we pieced together a protocol from the ones they used.
Joshua had two weeks of cranial radiation, and had an ommaya placed in his head to be used in place of the intrathecal chemo we’d used before. He had another ten rounds of chemo and went off treatment 4/12.
I had never heard of Burkitts before my son got sick. Our hospital had only seen a few cases over the years. Most of our oncologists had never treated anyone with Burkitts. Joshua had a very difficult year. He missed half of 7th grade and all of 8th grade, being too sick to even tutor. Most of the year was spent in bed or in the hospital.
But God is merciful. He’s rapidly recovering from his battle and looks forward to going back to school in the fall. He has a full head of hair for the first time in fifteen months! During his battle with cancer, Joshua endured: 20-30 trips to the operating room, 6-10 trips to the emergency room, tumor lysis, facial paralysis, seizure/stroke activity, 3 days of stem cell harvesting, lung collapse, oxygen tube, intubation, dozens of blood and platelet transfusions, an ICU stay, hundreds of needle pokes, more scans than I can count, surgery to implant a port and the ommaya, and 17 round of chemo (oral, systemic, intrathecal, intraommaya).
Plus a few times when we were told we could lose him at any moment. This was the hardest thing I could have imagined going through as a parent, and we don’t know what the future holds. But for now, we’re thankful that Joshua is still with us, we have hope for the future, and know that no matter what happens, Joshua is being carried by his God. And that this fight has not been in vain. We’re both stronger people for having gone through this.
Nathan Lunstad– Burkitt’s Lymphoma Cancer Survivor
In response to the Salt Lake City Marathon requesting submission of inspiring stories related to their marathon, I submitted my marathon battle story with Burkitt’s Lymphoma.
Just weeks before the 2011 Salt Lake City Marathon, which would have been my first marathon, I was diagnosed with Stage IV Burkitt’s Lymphoma, a non-Hodgkin’s Lymphoma (http://burkittslymphomasociety.com/). The week after completing a 20 mile training run I went into the emergency room for abdominal pain (March 23, 2011). This form of cancer is very rare and spreads very aggressively, with tumors doubling in size within 24 hours, so my condition deteriorated very quickly. Within a week of being diagnosed I was admitted to the hospital in critical condition with my kidneys failing. I was in the hospital for about a total of 3 months. Treatment was extremely aggressive, often including 4 chemo treatments in a day and chemo treatments to the spinal fluid.
The 2011 marathon was during my first round of treatment. I was very sick and weak, but had made an effort to walk short laps around the nurse’s station each day. A couple of days before the race, a good friend was able to pick up my bib number and shirt. The morning of the race at 7 am (the same time the actual race started) I started my “own marathon” of completing 26 laps in the hospital hallway pulling my IV and chemo cart by my side, and wearing my race shirt and bib along with my hospital gear (gown, mask, and gloves). Although 26 laps was the equivalent of about 2 miles, given how sick I was it took the entire day with several intervals of walking to complete the full 26 laps. I finished the last lap in the dark hospital hallway at about 10 pm. My marathon of 26 laps and the marathon of battling cancer turned out to be a bigger challenge than completing the actual 26.2 mile marathon.
After the first round of treatments as my body responded to chemotherapy I continued to walk everyday in the hospital (3-6 miles per day). Even though I wasn’t able to compete in the 2011 marathon, I attribute the training for this race as a big factor in saving my life. This conditioning gave strength and mental determination to battle the real marathon.
Today, I am miraculously free of cancer and have been spared many of the side effects of such aggressive treatments. After completing the marathon for my life, one year later I’m ready to complete my first 26.2 mile 2012 Salt Lake City Marathon.
Update Mon, Apr 23, 2012 1:01 pm
I finished the race! One of local TV stations (KSL) did a spot on Sports Beat Saturday. Probably the only time in my life I’ll make the sports section of the news. The local newspaper also ran a story. http://www.deseretnews.com/m/article/765570067
The reporter put together a Youtube extended version of the clip used on KSL’s Sports Beat Saturday.
I had developed a knee injury during one of the longer training runs leading up to the marathon, which was causing some severe pain while running. To be on the safe side I went to an orthopedic doctor last Thursday to have my knee checked out. The doctor gave me the green light to run. The knee pain was from the IT Band. I was told that running with the pain would not cause any damage, but would just be painful and I would just have to endure it.
My knee hurt from the very start of the race. Despite the pain I felt that I was able to keep a good pace and run with the main flow of runners up to mile 5. From miles 5 to 13 the knee pain was extremely intense. As a result I needed to walk long segments with short periods of running. At mile 13 the pain went numb and I was able to mentally block it out. I was able to push through and run almost the entire 2nd half of the race at about a 10 minute mile pace. The last half of the race I was rarely passed, but ended up passing a lot of other runners. My final time (from my GPS watch) was 5 hours 15 minutes with an overall pace of about 12 minutes/mile. I placed 834 out of about 1,500 that entered the marathon.
As I was running and mentally dealing with the pain I was thinking how there is nothing like cancer and chemo to prepare one to cope with the pain of an endurance race. A marathon is mentally and physically challenging, but is nowhere as challenging as fighting cancer! By surviving cancer (also applies to our families and loved ones) we are tougher and stronger! As cancer survivors we can accomplish great things!
One day, like any other, I was at the office and went to grab a sandwich for lunch. That afternoon, I had discomfort in my abdomen that developed very rapidly that afternoon into a very uncomfortable and intense pain. That night, I was taken to the ER for a scan, and immediately had my appendix removed– as it was about to burst.
From the Pathology of my appendix tissue, I was diagnosed with Diffuse Large B-cell Lymphoma, as many with Non-Hodgkins Lymphoma are. Only on my 2nd and 3rd opinions at large teaching hospitals did they request the additional testing (Cytogenetic FISH study) to rule in or out the Burkitt’s variant. Glad they knew what to ask… as R-CHOP would NOT have cured me!
My story is at stuartsmartt.blogspot.com. Below is a post from right after my Appendectomy/diagnosis.
After lunch last Wednesday (11/12/08), I got what seemed like a stomach ache. Thinking it was something simple and temporary, I stuck around the office… in modest discomfort. When I got home, I laid on the couch but just couldn’t seem to get comfortable. A close friend of mine who is an ER doctor was kind enough to come by and take a look at me. I was very tender to the touch in my lower right abdomen. He suspected that it was either gas lodged in my digestive system that would eventually pass with time, or less desirably, it could be my appendix.
I tried to fall asleep, despite the discomfort, only to wake up an hour later just after midnight with the most intesnse and uncomfortable pain I’ve ever felt. It was a combination of being kicked full-on in the groin plus having a thousand pound weight sitting atop my bladder. Natually, I hobbled to the bathroom, trying to go. No such luck. When I stood up, the low blood pressure, coupled with the intense pain, caused me to pass out briefly — only to utter to Candace to I needed to get to the ER – and quickly.
I was unable to walk down the stairs, so I had to scoot. I must’ve yelled out to Jesus, audibly, a hundred times. Despite that unbearable pain, He guided me one baby step at a time to the car. Once at the ER, being unable to get vital signs on me, they proceeded to hook up an IV and deliver some pain meds. This was a nice surprise. Five minutes later, I felt neutral to good. Wow. I remarked on how happy I was that someone, somewhere, figured out what we can put in our bloodstream to disconnect us from our pain. What a concept. It took on a whole new importance and relevance when it was me who was being guarded from the pain.
After a CT scan confirmed that it was indeed appendicitis, I was eventually rolled back to a pre-op area and then finally into the OR around 4:45am. The general anesthesia was, again, a marvel to me. They removed the appendix laprascopically. One incision at my belly button to insert a cauderizing cutting tool, another small hole below my belly button to insert a camera/scope, and finally another small hole below that to pump my abdomen full of CO2. Wow.
I was fortunate enough to be the only male who was admitted to the OB/GYN floor for my recovery. Got some funny looks when people would come in and wonder why the male was tucked in bed, while the female was sitting bedside in the chair. Surely something wasn’t right about that. I spent a day there. Walking to the bathroom was pretty much the highlight of the day. Oh, yeah, and throwing up was an added bonus. Once able to keep down a little cup of sugar-free jell-o, enough progress was made to get the clearance to head home… which we did.
To fast forward, after some shaking (rigors) and a fever north of 101 and change, I had to head back to the ER two days later for an x-ray and some blood work. This revealed an infection due to the catheter used in the operation. More meds – yyyeah. So back at home, I slowly got back on my feet. I even hobbled into work the Tuesday after. Daytime TV made me do it.
Wednesday of this week is when it got interesting. I went alone to a simple post-op doctor visit at Piedmont where they were to make sure my incisions were healing nicely. And they were. The doctor then added that they had sent the appendix off to the pathology lab, as is customary, and the results had come back abnormal.
In addition to being “extremely enlarged” (instead of being pinky-sized, was >5″ long by >1″ wide), the cells demonstrated an abmormally active growth pattern consistent with a blood cancer called DIFFUSE LARGE B-CELL LYMPHOMA. Simply put, your lymphocytes are white blood cells that travel in a unique network among your numous lymph nodes, fighting infection and bacteria in your body. Mine are abnormal and propagating much too rapidly. This hyper-growth caused the appendicitis, and was indicative of cancer being in my body.
I spent the rest of the afternoon telling close friends and family. I am ever-grateful to all of these people who droppped what they were doing, sat with me, listened, prayed, and reflected on what I had just learned. Thank you, thank you. While this is only the very beginning, I trust you will be alongside me every step of the way and cannot thank you enough.
The very next day, I had a long afternoon with an oncologist. He said that my type of Lymphoma is a ‘good’ one to have, as it grows very aggressively, making it more responsive to treatment. While he would stage it (I, II, III, or IV, an indicator of how extensive the cancer has spread), the treatment protocols would largely be the same: chemotherapy.
The spcific regimen is called ‘R-CHOP’. This are a cocktail of chemo drugs designed to attack all of the growing cells in my body. He wants us to start in the next week or two. In addition to losing all my hair, it will kill my sperm count for an indefinite period of time. Candace and I have been trying to conceive for a few years now, so this is a particularly harmful side-effect for us. I am hoping I will be able to freeze some ahead of time to have on backup. In addition, nausea and immune system depression are the obvious side effects to chemo that I don’t like to think about.
In order to stage the cancer, I needed to have a PET/CT Scan (which I did today) and a bone marrow biopsy, which I went ahead and had done right there and then when I was speaking with the oncologist yesterday. I wanted to check a box — anything — to make some forward progress in my journey!
Having a bone marrow biopsy kinda feels like someone sticking a big needle into your pelvis and sucking out some of your bone marrow(!) I just hate it when they do that. I was lying on my stomach, making awkard noises and making rapid jittery movements — anything to distract me from the sensation of a needle thrust through the walls of my bone or the very life being pulled out, 5 ml at a time! One point worth mentioning, as the doctor’s muscles quivered to push the needle through my pelvis, he said, “yep, yep, good strong bones here…” I got a laugh… well after the fact, however.
The PET/CT scan was fun. I got an IV with a radioactive glocose inserted into me. It is a fluouride solution mixed at a nuclear pharmacy within hours of being administered into the bloodstream. After 45 mins of sitting still (no reading or iPods allowed, as the mental activity would draw too much blood into your brain), I laid on a thin gurney, with my arms above my head, for 30 mins in ‘the tube’ — completely still. It was interesting to see just how stong the mind can be when you feel the urge to scratch several itches — yet cannot.
And so here we are. 48 hours +/- after my world got a little more interesting. Thanks for sticking it out thus far. This blog will probably be the place to get an update on how things are progressing with my chemo, and hopefully I will be able to capture some of the sweet moments, called life, along the way.
I feel, at the outset, that this entire experience will be a faith-building (and strengthening) experience for me and hopefully those around me. Having no choice but to slow down in life will force me to connect my head to my heart a little better, and really tabernacle with the Lord in the here and now. That’s really the only place that He can meet us: not in the nostalgia of the past, or the fear of the future… but right here, right now. There is no grace for events that never come about, so let us not spend any time worrying about whether they may come or not.
Let us just sit for a moment, at these crossroads of uncertainty, and meet God right here. To Him be all the glory. It is well.
Ellie’s battle with Burkitt’s began on October 1, 2007. She was 14 years old and a freshman in high school. Ellie had not been feeling herself for about a month when we took her in to see our pediatrician. A few hours later we were headed to the Kentucky Children’s Hospital in Lexington, Kentucky. After a 5 hour surgery to remove a 2.5 lb. tumor and resect her intestines, Ellie was diagnosed with stage 3 Burkitt’s Lymphoma. She started treatments almost immediately. Over a 3 month period of time, Ellie went from weighing 125 lbs. to 83 lbs. Nausea was her constant companion. She had to have physical therapy to help recover her strength. She developed neuropathy a month after treatment ended. Day by day, she slowly became herself again. Today, she is a compassionate young lady full of hope and dreams. To read about Ellie’s journey, go to javascript:nicTemp();
December 2007 Hunter was 5 and started having problems with stomach aches, going to the bathroom, and turning a ghostly pale white. After FOUR times to the emergency room with a misdiagnosis each time we found out January of 2008 he was stage IV with Burkitt’s. Our lives were changed forever. We started at Buffalo Children’s hospital of Buffalo, NY. The tumor was attached to his small intestines. After the first round of chemo, his kidneys shut down and he went into kidney failure due to the tumor lices. His blood pressure went way high and he ended up with swelling of the brain and ended up coding on us and then went into in a coma. 2 days in the UCI his kidneys started working and by the grace of god he woke up. Hunter had an allergic reaction to alot of the meds which caused numerous problems such as collapsed lungs. We were then transferred to Roswell Park Cancer Institute. Hunter never smiled, laughed or talked to anyone the whole first 3 weeks we were at the hospital until one day a paper airplanes was flown at a incoming doctor. It was the first time he giggled so that started the airplane cancer goal. Burkitts made into the spotlight in NY that year with Hunter. After being aired on CNN, ABC, NBC, CBS, FOX, and the cover of yahoo, and Guinness Book of World Records we ended up with 2.8 million airplanes from all over the world. Hunter is now 9 years old and the best “brat” a mother could ever ask for. The burkitt’s Lymphoma Society has been not only a blessing for me and others but it has helped me GREATLY with helping others cope and talk with other mothers who are currently going through treatments with their children. It has been such a blessing to meet others who have dealt with the same things but in different ways (as bad as that sounds). I wish we had a different meeting story but it is what it is. stinks. It has also been a good thing for Hunter because he has been able to meet other kids that have been through cancer. I wish everyone had a good outcome. Someday everyone will. But our motto in our family is.. Cancer suck but CanCer-vive! <3
Submitted by:: Cheryl
Here is a video we found back when Hunter was doing the paper plane drive.
For a month our 11 year old son, Logan complained of pain in his stomach. He missed about 12 days of school, but never seemed to feel any better. His doctors diagnosed him with constipation, which we treated, but he never felt any better. Other doctor visits resulted in suggestions like, “eat a cheeseburger and get some sunshine.”
Logan insisted, however, something was wrong and he needed help. He found a hard mass in his side, and asked us to feel it, but we weren’t able to feel it, (because we didn’t want to push too hard on his belly).
Finally, a doctor who knew something was very wrong. The doctor ordered an MRI, which revealed intesisception (a telescoping of the intestines, which severely constricts flow), and sent us to the UK for what he considers to be the best in dealing with this kind of ailment.
Logan was admitted to UK Hospital for surgery on June 7, 2010. Logan walked into Kentucky Children’s Hospital for what we thought would be an overnight stay to fix an intussusception with a fast easy enema. That is not what happen.
By the end of that first week in the hospital we knew something was very wrong with Logan. Logan was having a very tough time recovering from his initial surgery. He was still retaining fluids, had gained 17 pounds in water weight. His intestines were not yet functioning, and his pain was increasing and his mobility was decreasing. His heart rate and breathing kept crashing and setting off alarms, they could not get his fever or pain under control. Our sweet boy was very sick and we knew if something was not done soon my son might die. Early on a Friday morning I had just drifted off to sleep after a long sleepless and painful night for Logan when I was woken up by Logan’s surgeon and a whole gaggle of other medical staff and social workers invading Logan’s tiny hospital room with bad news. Lab results had come back, and the mass removed was Burkitt’s Lymphoma.
Logan in one year endured 46 IV starts/pokes, 107 painful dressing changes of a massive wound, 15 surgeries, bone marrow biopsies, 48 nights in the hospital, 2 trips to the ER, too many doctors appointments and x-rays to count, 2 blood transfusions, 2 types of central lines placed and removed, 14 times he had to sit while chemotherapy races into his sweet little body, 13 infusions, 23 scans, many shots and a month of IV antibiotics given at home by mom and dad, countless days and night of extreme belly pain, a cancer survivor, a family that is forever changed and a deep understanding that God is good all the time.
My name is Hayley Howell and my husband, Brian Howell, was my best friend, my rock, my soul mate. We were a young and very happy couple. Little did we know we would know the words Burkitt’s Lymphoma very well, very soon. Brian was diagnosed with Burkitt’s February 10, 2010.
He underwent 4 rounds of Hyper CVAD and one round of RCHOP. Unfortunately, after a very long nine month battle, Brian passed away September 22, 2010.
Our nightmare all started back in December 2009. Brian always threw his back out once a year. And this time it was very different. After being miss diagnosed twice and being in the emergency room three times, he was finally diagnosed with Burkitt’s Lymphoma.
Treatment started right away after the final result of numerous tests were performed to make sure Burkitt’s was indeed the correct diagnosis. Brian lost over 130 pounds during his illness and fought a very courageous fight!
As his wife, I stood beside him being his caregiver, patient advocate and best friend. We were trying to start a family when Brian became ill. We were married a little under 3 years at the time of his passing and were together for four beautiful years.
Since Brian’s passing I have written about our beautiful love story in the published book Unwritten: A Love Story which is out on Amazon.com and is available on kindle and the iBooks. Brian knew that I was writing this love story, this testimony of the fight to make it through such a horrible disease. I think he would be proud of the work I have done to bring awareness about Burkitt’s and telling our story.
To learn more about Brian’s courageous fight against Burkitt’s please visit Unwritten-A-Love-Story
“To the world you may be one person, but to one person you may be the world.”
My husband, Roger Knight, was diagnosed with Burkitt’s lymphoma at the end of April 2011. He had been having some health problems for about 6 months. His doctor had diagnosed him with GERD, sinuitis, etc. I had noticed in December 2010 that his stomach looked strangely swollen at times. He nor I knew what the problem was. In April he noticed a strange mass under his right arm. He went back to his doctor who immediately send him to a surgeon who immediately sent him for MRIs. After the MRIs he was sent for a biopsy which confirmed a diagnosis of Burkitt’s. We had never heard of Burkitt’s before this.
My husband was given an appointment with an oncologist. Before he could meet with the oncologist, he had to have emergency surgery for blood clots in one of his legs. This surgery landed my husband in the hospital. We did not know it at the time but for the next nine months he would either be in the hospital or at rehab.
The oncologist told my husband he would live only 4 weeks unless chemo was started within days of his leg surgery. The first round of chemo almost killed him. He had to be put on a ventilator for a week. He almost did not wake up from that. He did survive the first round of chemo. Also, he had lesions on both kidneys. The chemo did clear those up.
After he recovered from the first chemo, he went to rehab and came home for one week. The cancer started moving into his central nervious system, and he was readmitted to the hospital on July 4, 2011. An Omaya was put into his head for the methotrexate to be given to him bathing his spinal fluid. Also, he had a Hickman in his chest for chemo to his body.
He went through a lot mentally and physically. He never walked again unassisted. He could not balance after the cancer went into his central nervous system.
By December 2011 he had lost use of both arms and hands. His right eye was swollen and had a glassy look to it. He could not see out of it.His immune system was so compromised that he caught pneumonia at the end of December.
The neurosurgeons wanted to operate on his neck trying to help him regain use of his arms and hands. My husband agreed to the surgery. They waited a week or so due to the pneumonia. He survived the surgery but could not get over the pneumonia. His body was too weak. The doctors had also put a feeding tube in his stomach and a trach in to help him breathe.
My husband fought and fought to get well, because he wanted to come home again. His body finally could not fight all of it anymore, and he died on February 13, 2011. Thankfully our children and I were there with him.
I asked his oncologist how he had caught this disease? All he could tell me was in my husband’s case it was the Epstein-Barre virus.
