Andrew was a thriving young man, who at the age of 14, was diagnosed with Burkitt’s Lymphoma. January 6, 2012 is a day that will live in my family’s memory for more than one reason.
Andrew was born on June 18, 1997 healthy and happy. One day Andrew began complaining of stomach pain but I kept telling him that he was okay. I finally took him to the pediatrician who originally diagnosed him with constipation. After two months of constant complaining by Andrew, I noticed that he was as white as a ghost. I called the pediatrician and got an appointment with her. It was that day that would change our lives forever. The pediatrician did a complete exam on Andrew and she had this look on her face that I will never forget. She had a tear in her eye and explained there was a “lump” in his abdomen that needed to be seen in the emergency room right away. We rushed across town where we were greeted by a kind-hearted doctor who proceeded to tell us in a matter of minutes that she believed Andrew had cancer. My heart dropped, scared and crying, I listened intently to what she had to say. We began all of the many tests and biopsies that had to be done to give us concrete answers as to what was going on. On January 6, 2011, the diagnosis came. We were informed that some intensive chemo therapy would be involved and he would be spending months in the hospital on and off. Through all of this, although Andrew had to be scared, he never let anyone know. He appeared to be the bravest of us all.
After four months of chemotherapy he had a PET Scan that appeared to show no more cancer. We thought for a brief minute that Andrew was in remission! However; there was still a spot on the scan and there was no way to tell if it was scar tissue or if it was still the tumor. We waited it out for six weeks until another PET was done. Our hearts dropped when we learned that Andrew was not in remission. In fact, he was classified as “Resistant Burkitt’s Lymphoma.” We were so hoping that it was gone but of course, it wasn’t. Andrew’s tumor grew so large again, even through chemotherapy that it blocked his colon. He was put through a nine hour surgery where they were only able to get half of his tumor. He was admitted into the PICU where he was for two days. Andrew bounced back after his surgery and he was feeling pretty good. But then, the chemotherapy stopped working. We tried every thing but nothing would touch that tumor. The oncologist made an appointment for us to come talk about our options where I heard the worst words a mother could ever hear. “Andrew, we need to face facts and you need to understand that this cancer is going to take your life.” I was mad and I was hurt. Andrew just sat on that bed and cried, and I will never forget what he said. “I don’t want to die, I’m not ready.” The Make-A-Wish foundation had to rush around and get Andrew’s wish together in less than a week.
We took his trip to DisneyWorld and had an excellent time. While there the oncologist contacted me and said that Andrew was accepted into a clinical trial in Maryland. We were so excited at the prospects. When we returned home from Florida, three days later, Andrew and I took off for Maryland. We were there for a week while they tried a new type of chemotherapy. While there, Andrew gradually began to get sicker and sicker. We were sent home for a week and told we needed to be back the following week. While home, Andrew continued to deteriorate quickly. I had to make one of the hardest decisions of my life, do I keep him in the trial knowing it’s not helping or do I accept the help of Hospice and keep him comfortable. I chose Hospice. I never gave up hope that a miracle would happen. I kept hope until the very end.
Two weeks later, I remember laying in bed with Andrew and he was so very sick. He was incoherent that entire day but I still talked to him just like he was right there listening to every word I said. I told him how much I loved him and how proud of him I was. He opened his eyes just as bright as could be and said the only thing we could understand that day, “I love you too mama.” He closed his eyes and then I told him what no mother should ever have to tell their child, “it’s okay to go baby, I promise I will be okay.” A few hours later, he took his last breath.
On January 6, 2013, Andrew died, exactly one year from the date of diagnosis. He shares his date of death with my nephew who was still born January 6, 2011.
Andrew was a bright kid that had an incredible future ahead of him. He had bright blue eyes and an amazing sense of humor. He was the “glue” that kept us all together. There is not a day that goes by that I do not miss him or wish I could hug him just one last time. One day, I will meet him again and hold his face in my hands. We will be together again, this is what I look forward to.
Submitted by:Amy Wilinski
On March 4th our 10 year old son was admitted to the childrens hospital with pneumonia. He was treated with IV antibiotics and they inserted a chest tube to remove fluid from the right lung. On March 11th…thinking he was going home, his abdomen swelled slowly..and by March 14th his abdomen was 44 inches and he was moved to ICU. Friday. March 15th. 10:45 am I was informed Nathan had cancer. 10-12 masses in the abdomen. . Along with friends n family….and we all had high hopes. Later on we were told it …was Burkitts Lymphoma. Rapid moving cancer but rapidly treatable. Very optimistic. We got to talk to him before they sedated him for the chest tubes, breathing tube and the ports for chemo and dialysis. The fluid from the cancer had moved into the lungs. (The original fluid when he went in was more than likely from the cancer and not pneumonia). Pneumonia had been the focal point the whole time..him not eating, fever, increased white blood cells, etc. etc. …we saw him after all the procedures and he was heavily sedated. They were gonna start chemo that Saturday. We left the hospital to pick up my car at the other hospital in Plano. 10 min after we left we got a call saying he had “coded” ….we raced back to the hospital and I have never ran so fast to get up to the floor. They whisked us in this lil room. They had us sign papers for life support…to get him stabilized. The cancer had released so much potassium, they couldn’t restart his BIG heart. The worst day of our lives. We all went in and said our final goodbyes. Preliminary autopsy shows 35 masses. They took samples and all his lymph nodes. Our son was a loving, giving, caring young man who would do anything for anyone. We dont know that much about Burkitts or what attributed to his demise. We are still waiting for the final autopsy report. He did not know he had cancer. I feel so lost. Not knowing. What did we miss? …How could this happen to us? ….I just want to know how to help with early detection. RIP my lovely boy. Please help us. We read online and read and read but still….we are at a loss. His love for giraffes and other human beings far outweighed his love for himself. We would like to know if we could do a fundraiser for the BURKITTS LYMPHOMA SOCIETY in honor of Nathan here in our community?
Submitted by; Linda Langley
I would like to tell this (condensed) story of a young man who loved life and then got Burkitts Lymphoma. Tim Paul was 25 years old in 2010 when he started to get symptoms. He always had a great deal of energy. Tim had played ice hockey. He was in four adult leagues, including deck hockey. He went snowboarding every winter. He was certified in scuba diving. Tim had just completed the 1st level for USA Hockeys Coaching Education Program. He wanted to work with kids. Tim was a mechanical engineer and was to begin his classes for a masters degree in engineering management. He was doing all these things while working a full time job and remodeling his house he had just bought. Tim had a wonderful girlfriend Amy and alot of great friends. I believe the headaches and night sweats started in January of 2010. Sometime in February he started to have swelling in his abdomen and felt a swollen lympnode in his groin. Tim had asked my husband “how did you know if you had cancer” (my husband has non-hodgkins lymphoma)? Tim looked ok but I just knew something was wrong. Alarmed by his symptoms, I wanted him to go to our primary care doctor to get checked out. When tim called for an appointment in February the office staff said they were not taking any new patients:( He found another Dr office and got an appointment in march. I hope all who read this realize with BL time is ticking away!! When i talked with tim after the app, the Dr had told him there was nothing to worry about. They did no blood work or tests!!!then the doctor gave Tim a tetanus shot !! About ten days later Tim could barely walk and his jaw caused him great pain. He was taken to the hospital. There he was dx with non-hodgkins lymphoma and started on r-chop. after a week we switched him to another hosp where my husband was being treated. There we were told that tim had stage 4 burkitts lymphoma. He started treatment with hyper-c-vad and radiation in July. by september BL had continued to spread, and was growing faster. tim tried to stay upbeat but it was dificult and the long hosp stays were hard on him because of the severe back pain( yes we asked for better mattresses-no we did not get any). Doctors decided to go for a stem cell transplant . by october his spleen rupured and about two weeks later he had emerg surgery for a tumor on the base of his skull. Tim passed away October 28,2010. We were told he had the most aggressive BL they had ever seen. Have no clue how he got it ! loved ones lost a great person and good friend. It is so important to insist on getting lympnodes checked out. Only a small % of people will ever get BL but its’ easier to fight if it is caught early. And there is the problem with most likely all cancers, is how do you catch them early? Think of all the money that goes to research $$$$$$ People who are diagnosed with BL have very different outcomes. Few people have even heard of it. One of the last things my son Tim Paul said to me , was that he had a full life. I miss his laughter very much , and the way he enjoyed life. For those who have BL-keep fighting. For those who are working on finding a cure- keep searching. Cancer is a bitch!
The date Thursday, April 22, 2010 will remain in my head for the rest of my life. This was the day that changed my life in a way that I would never have even thought was possible.
On March 18, 2010 my husband went to get a tooth pulled. He had a mitral valve prolapse, so his Dr had always told him to take an antibiotic a week before going to a dentist. But, this particular dentist said he did not need it. She pulled his tooth and he came home. He was sweating very bad. (Actually, he had been sweating extremely bad two weeks before this, he was putting hard wood floor down in our kitchen and he was drenched in sweat.) The following Monday after his tooth was pulled he was in sever pain in his jaw. I called the dentist from my work, (I worked for a family Dr) and asked if the dentist could see my husband, I told them I thought maybe he had dry socket..they said send him over. After an hour my husband came to pick me up from work, he had a can of dr pepper holding on his jaw. He said she said it was ok, to take aleve and it was probably nerve dammage and may have pain for up to a year. We went home and he went to the bathroom. I walked back to the bathroom and he was sitting on the commode with his eyes looking forward, face gray, and not answering me..I was holding him up on the commode, telling him not to do this to me, I yelled for my 16 yr old daughter and 9 yr old son to help me..they came in and my son panicing, they helped me get him into the kitchen and to call 911…he kept going out on me, I kept trying to keep him awake..he was going into septic shock..as we arrived at the hospital, they started working on him. They put him in ICU over night, they said he needed a TEE and had to be sent by ambulance the next morning to a different hospital 2 hours away..a surgeon came in and said the CT scan showed something in his stomach, but could not see it well, but we won’t worry about this right now, we need to worry about the heart. The Doctor’s all thought he had infective endocarditis. (infection around the heart) We arrived the next day to have the TEE test done, (scope inserted through mouth down into esophogus and can see completely around the heart)..the cardiologist said that he did not believe he had an infection, but there was a small place he could see, but will go ahead and treat it with IV antibiotics for a week in the hospital. On Monday after a week of antibiotics, they discharged him and the cardiologist said his heart would outlive him, everything looked good. I told the nurse and hospitalist that his abdomen and ankles were very bloated and swelled..and this never had happened before. They told me it was just all the IV fluids he had all week. We went home on Monday, and on Tuesday was readmitted for swelling in the abdomen. This time they admitted him on the surgical floor. He was tested over and over with CT Scans, the Surgeon kept saying he could not see clearly and that the Views were, “shitty”..they started draing fluid off his abdomen and put a pediatric catheter on his abdomen..this still never helped the views..on a Wed after being in the hospital amost 2 weeks, my husband asked the Dr, “Do you think I have the “C” word?” The Dr said, “NO. you don’t have cancer, your not sick enough to have cancer, you don’t look sick and my cancer patients look sicker each day I see them.” My husband asked him if he could not figure out what is wrong to just send him across the street to WVU Hospital…the Dr said just give me another day, and that he had 10 Dr’s working on this. After that, I pushed my husband down to the Medical recorda and got copies and started reading them..I called the Dr I work for and confirmed what I thought I was reading…he has cancer!! His LDH was extremely abnormal, his WBC were 23,000…need I say more..He told me to tell the Dr to call his Cell and that he needs a full body PET SCAN…needless to say, the Dr never called my Dr…and the Hospital never done a PET SCAN…the next morning, I confronted the Dr..I looked him in the eyes and said, “He has cancer..” He said to me why do you say that?…I told him we went and got copies of all his records and I read them..he then looked at us both and said, they were moving him up to the cancer floor and doing a bone marrow biopsy in the morning (Friday, April 16th, 2010) and you can go home for the weekend..the Dr said, let’s hope it is lymphoma and not leukemia..my husband and I both had millions of questions..they stopped us and said we will have all the answers next Wed, April 21, 2010..you will come back to the hospital be readmitted and start chemo on Wednesday, April 21, 2010…We went home an hour after the biopsy..(my husband wanted to see our little boy, he wanted to have Easter since we missed it with him while in the Hospital..) My family had a bed downstairs set up and oxygen, walker…etc..waiting for us..we were home Friday, Saturday we had our Easter and I video taped it..my husband asked my two daughters from a previous marriage to come over to him..he hugged them and told them that he loves them(he had never ever done this before)…After being home Friday night, Saturday night..on Sunday morning I had the Dr I worked for do a home visit…it was not good..his abdomen was soooo bloated he could not eat, drink, very hard to breath and very very uncomfortable..He was taken to our local Hospital again and finally a Dr was upfront and honest..he looked at me and my mother in law and said this is aggressive and fast and you need a bigger hospital for this..He gave us the choice of WVU, Cleveland Clinic or Allegheny in PA…My husband said WVU, because of being near home. The ambulance took him at midnight Monday, April 19, 2010..As soon as we got there, Dr’s, nurses surrounded him drawing blood from both arms..talking this and that..my husband,( Don) and I looked at each other in terror…I finally spoke up and said they gotta slow down, we don’t understand what they are saying…so, one spoke to us..I explained that at the Hospital across the street, ran the same tests and we would have results on Wed and have chemo Wed..they said they can not use them..they have to do there own..so, he had another CT, two more bone marrow biopsies…and finally a full body PetScan,,but, the results would be in on Friday, April 23, 2010..and start chemo on Friday and will have the name of the type of cancer and how long he has..they came in and admitted him as having ACUTE KIDNEY FAILURE!! WHAT?? They started him on 5 hours of kidney dyalisis Monday afternoon..5 hours each day..it drained him..it was like it took the life out of him for a few hours..on Wed, April 21, 2010 they moved him to the Bone Marrow Unit…(This scared him and me, he prayed that night with me, then telling me I had to go on for the kids and I would find someone…etc..spoke of what funeral home, what clothes..etc..) I kept saying he will be fine, we will fight this thing..etc. On Tuesday he could not walk anymore, due to them hitting a nerve in his groin when they put in his tunnel cap, for dyalisis..so, after I complained they said on Thursday, April 22, 2010 at 1pm he would have surgery and they would do three or four things at one surgery..they were putting in a port, insert the tunnel cap in the chest area and take the groin area one out so he can walk again, and then do a biopsy of the abdomen…Wed, April 21, 2010 was a very lonnngg night..at 1 am his alarm kept going off due to his oxygen level dropping..etc…at 6am they came to get him for kidney dyalisis…we went..this time it was much different..usually they would make me wait in the hall until he was hooked up..this morning, Thursday April 22, 2010…she let me go in with her and watch everything…after 3 hours he had to pee…after finding a urinal he wanted to stand, the tech said he can’t, you’re hooked up to dialysis…this upset him..I helped him..he could not urinate, he said he couldn’t laying down.(he hadn’t urinated for two days) then, at 10:00 am he started having left arm pain and nausea…I got the tech and told her he has never complained of this before..I also complained his BP was very low, 96/44…she said that the Dr wanted it low due to dialysis and going into surgery at 1pm…he finished his dialysis and they unhooked him and I could not see his BP any longer, all he has was his O2 on him..she came and gave him a shot..I asked what it was for, she said pain..I argued he did not want pain medications..my mother in law said they know what they are doing..so, I never said anything else…a few minutes later the Dr came in and asked my husband what his pain scale was, he held 3 fingers up..the Dr looked at the tech and said he does not need the full dose of dilaudid…The tech said I done gave him a full dose…and they walked off…my mother in law went up to the room with his sisters to wait on me and him to get up there because the Dr’s wanted to speak to us..Don and I waited for them to come get us, due to him being bedfast…I was holding his left hand and he told me he was so tired and just wants to sleep and asked me how much more..I told him after this surgery at 1pm we would be done and start chemo tomorrow…(he had told me last night to go all the way with him..and he held my hand and looked at me and said, “You know what I mean.” I said yes..
As I held his hand through every dialysis, every test, every biopsy…never left his side the whole 23 days in the hospital, slept in chairs beside him, with my head near his chest..this day was much different holding his hand….
He squeezed my hand till it was blue, I yelled for a tech, get a Dr, get a Nurse..”I could not get his pulse..his eyes were set…after 15 minutes Dr’s came in with a crash cart, I looked at them and said you are all too late, he is gone..he is gone..they made me go into the hall, saying I didn’t need to see what they were going to do…my mom in law, sis in laws came running screaming…they heard code blue..I cried to them he is gone..my world is gone..after 25 minutes, the Dr’s came to me…the youngest one spoke to me..”We tried for 25 minutes to get him back..he is gone”…I looked at him and said,”You promised me you would help him, you are suppose to be the best..”How do I tell our 9year old son his daddy is gone?”
I set with his body for two hours until my parents brought my son and daughters..and my stepson arrived…
The Doctors came in while I was on my knees resting my head on his chest holding his hand..he was getting so cold…The Doctors wanted me to donate tissue to WVU research to help others for Burkitt’s….they wanted me to do an autopsy saying it would bring closure to me and my son in years to come..I done what they wanted..
My soulmate, love of my life, my world, my bestfriend, my husband and Logan’s daddy died on Thursday, April 22, 2010 at 11:35 a.m. after finishing a dialysis treatment..the death certificate on line# 1 cause of death was..PULSELESS ELECTRICAL ACTIVITY…#2cause of death Lymphoma
His autopsy showed Burkitt’s Lymphoma…the mass was in the lining of the stomach and had matastised…it was in his kidney, prancreas, small intestine, liver, prostate, esophogus…
And to this day, after 2 years, 5 months I still have no closure and don’t know if I ever will..it has been very hard on me and my son..our lives have changed so dramatically…two seasons I dislike with a passion is Fall and Spring..every Fall I go through a depression like no other, it was his favorite time of the year..he would smell the air and say,”Do you smell that?” (He was a big time hunter) And, Spring is when we were in the hospital together and I left the hospital by myself leaving him for the first time in 23 days…the longest ride I ever had..
Cindi E. Arbogast
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.