Category Archives: Burkitt’s Lymphoma Society in the News

News articles about us or our members.

Saving Sarah from Cancer

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My story started on February 6th 2016, I went to Urgent care because I had ringing in my ears, jaw pain, headaches, nausea, and was feeling run down. The urgent care doctor told me to take over-the-counter medicines and sent me home. The next day I was so nauseous I couldn’t get out of bed but I had my sister bring me to a store to get something I needed for my job. I spent the week using over-the-counter medicines for my symptoms but on February 14th I had a headache that would not go away with anything so I went back to Urgent care. The same doctor told me to get someone to drive me to ER and he would refund my co-pay because the could do more for me to cure my headache. I had my friend drive me and they treated my headache with Metoclopramide (Reglan) and told me to follow up with my primary care doctor.

On February 15th 2016, I had an appointment with my new primary physician. He thought it might just be tension headaches but decided to order blood work. He called me on my cell phone at about 6pm at night and said he wanted me to come in the next day for some more tests. I told him I could come in after work and he said he would wait for me.

On February 16th 2016, I went to see Dr. F and he told me the the blood indicated I had an elevate ALT and low platelets (49) Thrombocytopenia. He had talked to a hematologist at Regions hospital and the confirmed that more tests were needed and he wanted to see me this week too. Dr. F also ordered a CT scan of head/brain and maxillofacial without dye. On my way from his office to the lab (in the same building) Dr. J from Regions hematology called and said he needed to see me this week after they got the results of my blood work. We agreed to talk after he saw the blood results. I had 10 vials of blood for 21 different tests drawn and then I went to Regions hospital to have my CT scans.

On February 17th Dr. J called and said he had looked over my lab results and believed I may have a bacterial infection and my regular physician Dr. F would be calling in a prescription for Azithromycin and I should start that today. We made an appointment for me to see him in 2 days. Dr. J’s nurse called me the next day to confirm my appointment and ask me to show up early to have blood drawn before my appointment.

On February 19th 2016, I had my appointment with Dr. J at the Cancer Care Center at Regions hospital. He was very nice and said he thought he knew what was wrong but needed a Bone Marrow biopsy to be sure. They do them in the office so we stepped into the next room and had the procedure done. Then he asked us to go have lunch while we waited for the results and come back and we would discuss them. So I went to lunch in the hospital cafeteria with my mom and her friend who worked in the hospital. When we returned Dr. J explained that I had Non-Hodgkins Lymphoma according to the Bone Marrow aspirate. He said he thought he knew the type but would need to wait for the Bone Marrow to confirm. He told me that it was an aggressive Lymphoma which meant he could treat it better but I would need to start treatment right away. I was taken to have a PICC line put in my right arm by IR and admitted inpatient to South 6, the Oncology ward of the hospital. They started Rasburicase IV and Allopurinol for the Tumor Lysis Syndrome. That evening, Dr. J came to the ward to check on me to make sure I was ok and answer and questions I had. He assured me that I was going to make it and that if I had not been admitted I would not have made it through the weekend.

On February 21st, I had an MRI of my brainstem with and without dye. On February 22nd,I had a CT of my thorax with dye and abdomen/pelvis with contrast. February 23rd they confirmed that I had Non-Hodgkins Lymphoma Burkitts and we decided on a regiment for treatment. We chose R-CODOX-M / R-IVAC. February 24th, I had an Echocardiogram (pre-chemo). On February 25th we started cycle one of chemotherapy. on February 28th I had a blood transfusion of 2 units. On March 1st I had Intrathecal Chemotherapy (spinal tap) and was Neutropenic so couldn’t leave my room without a mask. On March 3rd I had another Intrathecal Chemotherapy (spinal tap) and a platelet transfusion. March 4th (My birthday, I’m now 34) I had and x-ray of abdomen and front view for abdominal pain, turned out to be constipation. March 6th I had another blood transfusion. On March 9th I got a day pass out of the hospital so I went to see my co-worker, out to breakfast with my mom, and home to see my cat. On March 10th I finished the last part of chemotherapy for round 1. On March 12th I had a blood transfusion. On March 13th I was discharged from the hospital after 24 days. On the way home we stopped at Great Clips and I got my hair shaved as it was falling out and I didn’t want to clog the drains at home.

On March 15th I had an appointment with another Oncology doctor as mine was out of town and he said my counts were ready to start round 2. On March 17th I got saline and Rituxan in the Infusion Center as well as a Lupron injection. On March 18th I checked back into South 6 for treatment. On March 22nd, I had Intrathecal Chemotherapy and was discharged the next day and got a Neulasta injection.  On March 24th, 25th, and 28th I had Infusion Center appointments. On the 25th I was prescribed Levofloxcin for my Neutropenia and on the 28th I needed to have two units of blood (6.2) and one unit of platelets (5) because they were so low I had a bloody nose that wouldn’t stop!

On March 29th My mom took me to the ER for high fevers and chills which would spike every 4 hours. I had CT maxillofacial without dye, CT Abdomen/pelvis with contrast, Chest X-ray frontal/lateral platelet infusion (12), and was started on antibiotics after cultures were drawn. On March 31st, an upper extremity venous doppler study was done. Then on April 1st (No April fool here) the blood cultures showed a staphylococcus species, Coagulase negative in my PICC line. So they removed the PICC line and I became a human pin cushion for days as they waited for the infection to clear. I had to have 2 IV’s because the first one got infiltrated. On April 4th I had another chest X-ray frontal view. On April 5th a new PICC line was inserted left arm by IR after PICC services tried for a long time to insert on and couldn’t get it (ouch!). On April 7th they started round 3 of chemotherapy. On April 8th I had Intrathecal chemotherapy and was discharged on April 10th after 13 days in the hospital this time.

April 11th, 13th and 15th I had Infusion Center appointments with 2 units of  saline for dehydration on the 11th, clearing of my PICC line with Thrombotic agent on the 13th and I was Neutropenic again on the 15th. I went to the Infusion center for Neuprogen shots on April 15,16, and 17th. Then on April 17th I went to the ER after feeling dizzy and was diagnosed with Symptomatic anemia and given two units of blood.

On April 18th, I woke up with abdominal pain that moved to my left side and got worse. We went to the Infusion Center in a wheel chair due to the pain and was seen by the physicians assistant. She prescribed Morphine for the pain, Ondasetron for the nausea, and started antibiotics Metronidazole and Cefepime. I drank contrast and was taken to CT for an abdomen/pelvis scan. When we got there they didn’t want me with other people due to being neutropenic so they put me in another room while I waited. I got really nauseous and threw up, but luckily it was only liquid on my stomach. Then I was back to South 6 with a suspected case of Colonitis. On April 21st I had a chest X-ray frontal view. On April 22nd I got the last part of round 3 chemotherapy and was discharged from on April 24th with 7 days in hospital.

April 25th, 27th, 29th and May 2nd were all Infusion center appointments with a clot removal on the 27th from my PICC line. On May 4th, we started round 4 of chemotherapy with saline and Rituxan at the Infusion center. On May 5th I was admitted to the hospital for my last round of Chemotherapy. On May 8th I had a blood transfusion and on May 9th Intrathecal Chemotherapy. Then I was discharged on May 10th with only 6 days in the hospital this time. On May 11th I had an Infusion Center appointment where the cleared the blockage, changed my dressing and had an Neulasta Injection.

On May 12th I was admitted to ER for Neutropenic fevers, Cefepime antibiotic was started, and blood cultures were drawn. On May 13th I had a blood transfusion and an EKG. On May 14th I had a blood and platelet transfusion. On May 16th, I had a CT scan that showed I had Typhlitis and Pheumonia and a platelet transfusion. On May 17th I had a blood transfusion. On May 20th I was told I was C. Diff positive and everyone now was wearing yellow gowns and gloves when they come in the room. On May 21st another CT was done and for a while while I fought these infections I has on a liquid diet.  I was given antibiotics Metronidazole and Vancomycin, first in IV and then switched to oral medicine. On May 26th I was discharged to go home and recover after 15 days in the hospital.

On May 27th, 31st and June 1st I had Infusion Center appointments with a clot cleared on the 27th and dressing change on the 1st. On May 31st I had a CT scan and on June 1st I had a Bone Marrow biopsy to check to make sure the Cancer was gone. On June 3rd I had an appointment with Dr. J and he told me the tests showed there was “No Cancer” but he wanted to do a PET scan and a liver MRI to make sure. On June 10th I had a PET scan and it showed I had “No Cancer.” On June 10th, and 17th I had Infusion Center appointment to have my dressing changed and blood cheeked with my PICC line being removed on the 17th. On July 1st my lab results showed my blood counts to be in “normal” ranges.

Finally after 13 blood transfusions, 5 platelet transfusions, 7 Echocardiograms, 7 CT scans, 2 MRI’s, 4 trips the the ER, 4 infections, 5 spinal taps (CNS Chemo), 2 PICC lines, 2 Bone Marrow biopsies, 71 days inpatient at Regions hospital (South 6), and 218 cards from friends and family I’m in remission!

Rian Short Testimony

A Testimony of Miracles through Faith as told by a Cancer Survivor

By Rian Short

Diagnosed: Burkitts Lymphoma, Stage IV on Aug 2nd,        2015                                              

Cancer Free: Sept 25th, 2015

Please share with all who would listen

“Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the suffering of Christ, so that you may be overjoyed when his glory is revealed.” 1 Peter 4:12, 13

I expect front row parking no matter where I go, any time, day or night. It does not matter to me if it is black Friday, Christmas, or the state fair. I will always expect front row parking. And just to be clear, when I say “front row parking” I mean directly at the front door or entrance to the event. In fact my expectations are so high that I will have a front row parking spot waiting on me whenever I get to my destination, I am completely shocked if it is not there waiting on me.

I fully understand that this sounds crazy. I am expecting to receive something to happen in my favor 100% of the time in a situation that I have 100% no control over. I have absolutely no control over whether a front row parking space will be available or not when I arrive at my destination. This is not reserved parking I’m talking about. I don’t call ahead, have parking spots with my name on them at every location in the United States, or park illegally in the handicapped parking spots. I simply drive to the location expecting there to be a front row parking spot waiting on me and in all honesty I can say that this occurs 98% of the time. The other 2% of the time I will be within the front 4 spaces.

Many of my friends and family have experienced this with me. At first they called it luck, but then as they noticed it would happen almost every single time they went somewhere with me, they began to use words like….odd…weird…some even said I must have paranormal powers.

I am here to tell you that I DO have paranormal powers. In fact I have many paranormal powers. One of the greatest of these powers is what most people would call faith. It was a gift given to me from our Lord and Savior Jesus Christ. In fact all of my “paranormal powers” are simply gifts that I have asked the Lord to give me throughout my life. I have received every one of the gifts I have asked for, no questions asked. But keep in mind there will always be times when those gifts are tested. “Because you know that the testing of your faith produces perseverance.” James 1:3

I know that it sounds extremely trivial that I believe the Lord provides a front row parking spot for me on a consistent basis, as though the Lord was my personal valet service. But in fact, the Lord commands us to use our faith in all things and through all aspects of our life regardless of the size and scope of the situation. Mathew 17:20 states “because you have so little faith, truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there, and it will move. Nothing will be impossible for you.”

Many of us in life have had our own mustard seed moment. That moment in time where we bring to bare all the faith we have in our mind, body and soul in order to bring us through a situation in life that seems to be unbearable.  My mustard seed moment came on August 2nd 2015, when an Emergency Room doctor did a CAT scan of my abdomen only to let me know I had cancer from my belt line to the bottom of my chin, basically everywhere he could see on the scan. I was taken immediately to St. Johns, downtown Tulsa, Oncology and received a diagnosis of Stage IV Burkitts Lymphoma. If I ever needed a front row parking spot I needed it now.

Jesus went through a battle of faith more than once. Immediately after Jesus was baptized he was taken into the desert to have his faith tested. Jesus was there fasting 40 days and 40 nights. At the end of 40 days and 40 nights when his body, soul and mind had to be at their weakest. Satan came to him and said “If you are the son, tell these stones to become bread”. Jesus responded “It is written, man shall not live on bread alone, but on every word that comes from the mouth of God.” Satan also tempted Jesus to throw himself from a mountain top to prove he could be saved by angels and by showing Jesus the whole world and telling Jesus that if he would just bow and worship him he would give Jesus the whole world and all that was in it.

Here is what I find most fascinating about this whole story. Jesus who was at his weakest in his life was battling Satan who I’m sure had not missed a meal or an hour of sleep. Jesus was going up against the master liar and manipulator at his weakest moment. Imagine yourself being thrown into the arena with a Gladiator. After you have been starved of water and food for 40 days. What do you think your odds are? What would you do? How would you defeat this huge destructive force? The amazing part of this story is that what Jesus used to battle the most evil force in the universe was the beautiful and simple Word of God. Three times Satan tested Jesus and all three times Jesus won the battle by using the Word of God. “It is Written:” Matthew 4:1-11

Jesus exercised his faith through saying out loud the word of God and the promises that God has made to all mankind in his word. So believe it or not, my belief is that we are to do the same. Speak the word of God and it shall manifest in your life. God keeps his promises in the big things and in the little things alike. We should always exercise our faith in the small matters of our life; front row parking spots, so we are prepared to exercise it in the huge situations in our life; cancer.

My faith in my front row parking spots just took center stage. I knew I had faith, I had used it many times before, but mostly for the simple and mundane battles and trials of life. The question that kept spiraling through my thoughts now was ‘Do I have the faith it’s going to take for this battle? This was not about a front row parking spot. This was about me living or dying.

 

 

DIAGNOSIS

Cancer does not discriminate. Cancer does not care about your age, gender, race, ethnicity, or sexual orientation. Once it decides its coming for you then the fight is on. Part of the fight is that there are all types of cancers. And of all the types of cancers there are an unlimited amount of locations in the human body for cancer to rear its ugly head. Oncologists fight this battle every day on determining what type of cancer it is and the best course of treatment. This makes cancer a formidable opponent from diagnosis to what I am calling end of journey. End of journey either means you are in remission or you have passed away.

An accurate Diagnosis is critical to how your journey is going to end. If the Doctor gets that step wrong then nothing will matter after that point because the treatment will be ineffective. Some cancers are loud and boisterous saying “Here I am, bring it on.” These loud fellows you can normally see outward signs of, possibly followed with pain in the area. Other cancers are more covert. They like to sneak up on you and catch you off guard. And it is normally by accident or a routine doctor’s visit that these cancers are located.

My cancer was the loud in your face cancer. I had left my home for two weeks and traveled to California for a military assignment. I noticed while there I was having trouble catching my breath, going to the bathroom and sleeping. I also noticed a severe tightness in my abdomen and chest area. However, I rocked on and did my duty for the 14 days I was there. It wasn’t until the last day that I knew something was wrong when I went to button up my jacket and the buttons were tight against my body. I began to believe I was severely constipated and just decided since it was the last day, I would grin and bare it till I got home and could go see the doctor. I flew back to Oklahoma and by the next morning I looked like I was eight months pregnant. I went directly to the Urgent Care facility by my house. The doctor who saw me pushed on my belly, sent me for an x-ray and then came back in the room to let me know it was constipation and he would assign a prescription to help get me moving again. Elaina got the prescriptions and we headed to the house. All is well, right? I took my meds and went to bed expecting any moment to rush to the bathroom and empty two weeks of food waste quickly. When I woke up the next morning and that had not happened I became nervous. Elaina and my mother were talking in the living room when I came out. They had decided something was definitely wrong and I needed to go to the ER. So I threw on my shoes and we all headed to the emergency room at St John in Broken Arrow. Dr. Noe was my physician. He looked at my stomach, pushed around a little and then stated that he wanted to send me for a CAT scan. I asked if he thought I was just constipated, and his reply was an unequivocal “no”. “What I am seeing here is not really consistent with constipation unless it is a major blockage, but you say you are just feeling pressure and no pain, is that right?” I thought for a second and then realized he was correct. An then I guess that is when it set in with me that I had not been feeling pain through this whole thing……just pressure. So we waited for the results. Dr. Noe came back into the room and had a seat in front of me and asked “Is it ok if I talk to you in front of your wife and mother.” I knew then whatever was getting ready to come out of his mouth next would not be good news. I told him that would be fine and Elaina and mom shook their heads in agreement. He said “I am sorry to have to tell you this but you have cancer. “ He went on to tell me I had a small mass in my lower intestine and that the cancer was caking on the omentum of my entire abdomen area from my chin to my belt area. Basically everywhere you could see on the scan. Needless to say this upset my mother and Elaina immediately. Elaina stepped out of the room and my mother set in the chair in shock. I have to tell you at this moment that it would have been a very good time for me to break down, go into to shock, get angry, demand a second CAT scan, scream, cry, throw things around the room, or simply just zone out. At the very moment the words left his mouth that I had cancer I felt a calm come over me that I have never felt in my life. The Lord was in the room, I could feel his presence, I could feel his warmth, and more than anything I felt his reassurance that I was going to be ok. Regardless of what lay ahead, the Lord was clear that he was going to bring me through it 100%. He also made it clear in no uncertain terms that he was going to be right beside me all the way. The Lord said “Never will I leave you, never will I forsake you”. Heb 13:5. At first, like most Christians, you try to rationalize away what you are seeing or hearing. However, later my wife and my mother said that they felt the same sense of calm at the exact same time. So my family and I were just told the worst news of our lives, and all we could feel is the loving embrace and calmness of Lord Jesus Christ.   Eph 2:14 “For he himself is our peace”

 

MIRACLE ALERT: Once someone is told they have cancer, they typically will start the same psychological path one takes when dealing with the death of a close family member. Those being denial, isolation, anger, bargaining, depression, and then acceptance. I was familiar with these stages through my time in college and my studies in psychology. I knew this could be coming. No sooner did this thought go through my head that I felt the warmest, most comforting spirit fall over me. It was like a warm heavy quilt. The Lord told me right then that I was going to be ok. He stated that I would have to go through this trial but that he would be there the whole time. The entire room felt warm and bright. Later, after asking my Mom and Elaina what they felt at the time they both stated they had an overwhelming feeling that I was going to be just fine. This is not a typical response to finding out you have cancer. I never experienced any of the typical responses to finding out you have cancer. Did I ever have fear? Yes. Did I ever get depressed? Yes. However, my fear was not having enough faith and my depression was from wondering why God’s amazing grace would choose to save a sinner like me. As far as me wondering if God was going to do what he said he was going to do……I never doubted that.

WHAT KIND OF CANCER ARE WE TALKING ABOUT?

I was transported to St John Tulsa the same night as we got the news. Like I said in the introduction, my feet never touched the ground from that point forward. We arrived at the hospital and I was taken straight to a room. I was hooked up with IVs and told by the nurses we would be seeing the DRs first thing in the morning. The next morning as scheduled I was greeted by DR Pisc’s P.A. and the fight began. We were told there would be a biopsy to determine the type of cancer we would be dealing with and then would need to seek a course of action. I went through a lot of tests that day, had what seemed like gallons of blood drawn, 1000 needle pokes, and stuck into one machine after the other. I had the biopsy and on and on we went. Of course I am exaggerating here, but when you are going through it everything seems out of proportion.

Dr. Pisc came in to see me before the biopsy or any of the test results had come back. I asked her what she believed, based on her experience, what it is we were looking at?  Dr Pisc told me that she could not be 100% for sure what type of cancer it was but what she could tell us is that we needed to pray it was not a Hodgkin’s Lymphoma but that it was a Non-Hodgkins. The outcome is night and day as far as the two prognosis would be concerned. She said that as soon as she heard something she would let me know. Basically what she had just told us was that depending on what type of cancer you have, determines how long till you see the bottom side of a casket lid. She could give no reassurances. She was a doctor and she was not going to guess or hint one way or the other, and I don’t blame her. It is serious business mixed with huge emotions. This would be an answer you wanted to be 100% on target with data to back it up.

After the doctors left it was quiet. It was a quiet that you could actually feel laying over your body like a blanket. Elaina, Mom and I were in the room. There are those Christians out there reading this and asking me why I just didn’t ask for complete healing in my body from head to toe right then and get up and walk out of that hospital. As a Christian I can tell you that I have seen in the past where what I call, immediate miracle responses, have happened. I have witnessed them with my own eyes. There are the folks that are healed 100%, immediately, without medication or any outside healthcare. To be honest my faith at that time was not strong enough to see something like that happening. I knew right there laying in that bed that I would not be able to raise my faith to the level necessary to ask and know beyond the shadow of a doubt that the Lord had healed me 100%. That brought me to the sobering reality to question where exactly my faith was with the Lord. Of everything I had been told about my cancer, the waiting for the biopsy to come back, the blood tests, the CAT scans, none of it came even close to raising the level of concern I now had for where my faith might be in the Lord. This genuinely scared me. Being in the situation I was in I did the only thing I knew to do, and that was to ask the Lord where my faith was. So I prayed and I asked the Lord where my faith was with him. With all humility I wanted to know if my faith was going to be strong enough to get me through this journey and through the valley of the shadow of death I was now walking through. Jesus answered me immediately and without hesitation as I prayed. The answer he gave was simple and beautiful. To this day I have never had such few words make such a tremendous impact on my life, Jesus said “Do not Fear, I will meet you where you are.”  Isa 41:10 “So do not fear for I am with you, do not be dismayed, for I am your God”.

After I had heard these words the Holy Spirit showed me what to do and how to pray. See, faith is a very powerful force. It can move mountains. But what most don’t realize is that it is the faith of the person in question that will determine the outcome of any spiritual event, including healing. In the hospital room waiting on our diagnosis, I asked my Wife and Mom to pray with me. I asked if we could all agree that my diagnosis would come back Non-Hodgkin’s Lymphoma. Elaina and my Mom both said they could, so that is what we prayed for. I prayed that the disease be one that was non terminal and was not a Hodgkin’s Lymphoma.

My Wife and Mom have been Christians long enough to know that if you have a group of Christians praying for something, small or great, and the group is not in agreement on what is being prayed, you will not get results. Mat 18:19 “Again, truly I tell you if two of you on earth agree about anything they ask for, it will be done for them by my father In heaven.”   So when I asked them if that was something they could agree with me on they knew exactly what I was asking. The moment we went to prayer with this request we would be standing in front of God the Father and agreement on a prayer is important.

For those of you who are not familiar with the principle of agreement, it would be like having 3 people go in front of the board of a company to ask for a specific request. Once inside the spokes’ person for the group of three lays out to the board members exactly what they are there to request. Now imagine that the whole time the first person is laying out the request, the other two, or even just one of the other three is shaking his head side to side in full view of the board. Chances are the board members are going to immediately notice that the group of 3 are not in agreement and nothing will be granted. My Wife, Me, and my Mother, when we prayed, were in agreement and by being in agreement we were able to go before the “board”, Father, Son, and Holy Spirit, with the full confidence that we would receive what we had requested in all humility.   Our humble prayer was that the Lord send his healing Angels, that I might be diagnosed with the least deadly form of the disease. Then we began to Thank Him for the good news that we would be receiving very soon. We Thanked Him for that which had not yet been received as though it was already manifest in my life. 2 Cor 5:7 “For we live by faith, not by sight”

MIRACLE ALERT: The next morning I was up early and decided to take a walk. Elaina and Mom were already up and talking. I maneuvered my way out of the hospital bed and headed for the door. Normally one of them would be right beside me but for some reason this was not the case on this particular morning. As I rounded the corner by the nurse’s station I saw Dr. Pisc and made it a point to say hi to her. She looked and me and said, “Oh yes, I have good news for you.” I asked her what that was and she said that it was Non-Hodgkins. I asked her to hold her comments and follow me back to the room where my Wife and Mom could also hear what needed to be said. Dr. Pisc told my Mom and Elaina that she had great news. She began to tell us that from the biopsy I was revealed that I had Burkitts lymphoma. She explained that it was a very aggressive cancer and that I was already at stage 4. I know for a fact everyone of us in the room at this point, except for the doctor, was wondering what the great news was. She then went on to explain that Burkitts was a cancer that was 100% curable in about 80% of the cases. She also stated that even though my Burkitts was in stage 4 that it would be responsive to chemo therapy. She stated my prognosis was very good. We were all smiling at that point. I guess the smile I couldn’t get off of my face just kept growing around the room. The night before we had prayed to the Lord that I would be diagnosed with the least deadly form of the disease. Not only did my diagnosis come back as being one of the least deadly, it came back as being 100% curable. Glory be to God the Father.   My chances of having a 100% curable cancer out of 200 total cancers and 7 billion people in the world was .000000071% chance. Again, these are not odds that anyone would bet on. (Feel free to check any of my math, I could be off a bit, but it close. I’ m not a mathematician but tried my best))

SHOCK OF IT ALL

I was now in shock. Not because of the thought of having an extremely aggressive cancer, but by the fact that I had just been diagnosed with a curable cancer. I never knew those two words could ever go together. To the normal person that sounds insane. I know there are folks out there who will say the Dr. was just telling me something that was already there and God had nothing to do with the diagnosis. What I would simply say to you is that the doctor read the CAT scan and could not determine what it was which led to the biopsy. Until the biopsy came back, no one on this earth had any idea what type of cancer was going to be diagnosed. The simple point of the matter is that I, Elaina, and my Mom in full agreement went before the Lord in faithful prayer, full of expectations, and asked that my cancer be the less lethal of the two. What we received was not only a less lethal cancer but one that is 100% curable 80% of the time. My family and I prayed and believed before we knew any outcome. We prayed with the full expectation of deliverance based on what we had agreed upon together. We agreed, we prayed, we enthusiastically expected, and we received what we had prayed for. Then we spent some time praying and Thanking the Lord for that answered prayer. My eyes had been opened. My mustard seed of faith was continuing to grow. Jesus told me that he would meet me where I was at. He delivered on that promise. The entire front row of heavenly parking spaces had been open to me. The veil had dropped from my eyes and I now saw that I could ask the Lord for 100% healing from the top of my head to the bottom of my feet. I could see that nothing was too big for him or too small. Each decision from this point forward would be taken to in prayer. And from this point forward we would begin Thanking God for the healing I had received. From that point forward we would give thanks and pray as though I was already healed 100%. We all knew that more decisions had to be made moving forward but those decisions would be weighed in the hands of the Lord. Our next big decision came quickly. We were asked if we wanted to go to MD Anderson or OU Medical for my chemotherapy? We would need to get headed that way the same day so that I could get started on my treatments as soon as possible.

 

WHERE TO GO, MD Anderson or OU Medical

Burkitts Lymphoma is one of the fastest growing cancers in the world as well as one of the rarest. So in my case I went from not having cancer at all to Stage IV in about 6 to 8 weeks. The fact that I was already at Stage IV created a high sense of urgency in my doctors in Tulsa to get me to a good cancer hospital immediately. Dr Pisc recommended MD Anderson in Houston Texas or OU Medical in Oklahoma City Oklahoma. We could feel the pressure from them to make a decision and to make it quickly. I remember feeling like I had just been in a serious car wreck and just wheeled into the emergency room. Doctors, nurses and family members rushing around, trying to make split second lifesaving decisions for me in which I had no control. That is the worst of it all. Once you are diagnosed with cancer, any shred of control you thought you had is gone. At that very moment you have to give total trust to the doctors and nurses who are there to help you. You have to rely on their expertise. I have to say the cancer patients who seemed to have the most trouble throughout their treatment were those individuals who wanted to argue with the doctors, change medications, not take medications at all, argue with the nurses and try to tell the nurses what they needed and when. It never ended well for them. My family decided to give Jesus the wheel to my situation immediately. I had no idea where the Lord would take us. Then I heard my Mom say “We will give it to the Lord. We will ask Him to open up a bed at the hospital you need to be at.” Once again Elaina, my Mom my brother and sister-in-law and I went before the Lord. We prayed for a quick response telling Jesus that we would trust in his judgement, in that whatever hospital called first with an open bed is the hospital we would go to. Jesus Christ answers prayers on his time. I have always heard that from preachers. God will do it in his time…….be patient and wait on the Lord. Realistically we did not have time to wait. The rate at which the cancer was spreading was exceptional and not getting hooked up to chemo as soon as possible could mean the difference between life and death. It seems I should have been focused on the cancer that was eating my body at a Piranha rate of speed, but I still had a calming peace. I can’t tell you the feeling of peace I had. The Devil comes to kill, steal, and destroy and that includes your peace of mind. Visions of the disease eating me from the inside out would begin to pour into my mind. The devil reminding me that I had the most aggressive and rarest cancers in the world. The devil asking me what the chances would be of even finding a doctor who would know anything about such a rare cancer, and with that, there would be no way they would have any idea how to fight it. The Devil is a master liar. Knowing this, I went to the Lord in prayer once again Thanking Him for not allowing any hand brought against me to prosper, not even satan’s. I knew the Lord was already at work, knowing beforehand what I needed. And if there was anyone in the universe who knew exactly how urgent the situation was it was my Lord and Savior Jesus Christ. Just 45 minutes later Dr. Pisc came back into the room to let me know that OU Medical Center called with an open bed and that there was an ambulance standing by to take me there. We all smiled, praised God and Thanked Him with tears of joy.

As it came time for me to leave Tulsa and head to Oklahoma City I couldn’t help but wonder, why OU Medical Center. Why not MD Anderson. I mean MD Anderson was supposedly at the top when it came to putting cancer patients into remission. They are known throughout the United Stated if not the world as the hospital to go to if you have cancer. Especially late stage cancer like I had. In the Ambulance I prayed and told the Lord he would not have had my Mom move in the spirit that way and move Elaina and I to agree to go to the first bed open if he did not have a plan. I knew there had to be a plan. I just didn’t know what that plan was at the time. When I found out, it blew me away. I was in shock of the information I was given. I couldn’t believe what I was hearing.   I remembered the Devil coming to me and telling me that I had one of the rarest and most aggressive forms of cancers in the world. I remember the Devil implying to me that there would be no way that that there would be doctors available who had the knowledge to fight this cancer.

Miracle Alert: Dr. Ikeguchi and Dr. Herman were my first two Oncologists at OU Medical Center. Dr Ikeguchi had been to Africa to study Burkitts Lymphoma and the effects it had on the children there. Gaining extensive knowledge on this rare form of Cancer. Dr. Herman had spent his time studying Burkitts Lymphoma. According to the nurses at the hospital Dr. Herman is considered an expert in Burkitts Lymphoma cancer and has been published for the knowledge he has gained and the work he has done in this area.  What are the ODDs that the hospital I am sent to had two of the best authorities in the United States and possibly the world at that Hospital and that they, of all the Oncologists in the field would be my Doctors for the first two months of my treatment.   Anyone who knows me, knows I like to figure probabilities. The chances of this happening was a .00034% chance out of 100%. Not good odds at all in the natural world. The ODDs including hospitals that are strictly cancer hospitals is 3,413,522 to 1. Approximately. There is nothing bigger than Jesus Christ. There is nothing stronger than the word of God to rebuke the destructive forces of the Devil. (Feel free to check my math, I could have been off a bit.)

WHERE THE MIND GOES THE BODY WILL FOLLOW

I have seen a lot of science fiction shows in my life. That is also a major understatement. I even watch the SyFy shows that would be labeled B or C category or one or two stars. If it is SyFy, I will watch it. We arrived at OU Medical Center and went straight to the seventh floor. This is the Oncology floor. As I was being wheeled towards my room I was looking in the occupied rooms trying to catch a glimpse of what might be in store for me. I had never seen anyone on chemo, never even talked to anyone who had been on chemo. So to say I had absolutely no idea what to expect would be absolutely 100% correct. I caught glimpses of the end of the bed in each room but couldn’t see toward the front where any of the SyFy stuff would be located. I was not nervous……ok I was extremely nervous. Yes, I believed the Lord was with me, no doubt. But the battle field of the mind is a very active and treacherous place and you couple that with 43 years of SyFy imagination and well I saw tubes coming out of heads…big glass jars filled with green liquid…contorted body parts and you get the picture. Not knowing a thing can be the scariest thing of all. The devil loves to draw you into the world of what if and speculation. He knows that if he can move you away from the word of God, then he has the opportunity to take you on a demonic joy ride of fear.

They wheeled me into the room and helped me into the bed. I slowly looked around the room. No Frankenstein, Dracula or the Devil. No Glass jars filled with green oozing liquid. It was just a hospital room. I asked the Lord to forgive me for my fear. I know under the circumstances most people would be scared and it would be completely understandable. However, I knew through the word of God that fear was the opposite of faith. Fear can freeze you physically and mentally. It can keep you from moving forward and can block you from seeing the things that the Lord is doing for you, around you, and with you. I prayed right then “Lord, forgive me for being fearful. I know that you are with me and that you are in control of my life, this situation, and the outcome. I love you Lord. Amen.” I know it wasn’t a fancy or long suffering prayer, but Jesus heard me. I felt a complete calm come over me. Even as the Doctors and nurses came in the room, two and three at a time, taking blood, hooking up machines, sticking needles in my arms, taking X-Rays……I was at peace knowing that Jesus was in control.

One thing is for sure is the moment you decide to give it to the Lord the devil will be there to fight you every step of the way. He will throw at you everything he has in his arsenal to keep you from holding the faith. He will do everything within his power to make you doubt, question or even deny the healing grace the Lord has given you. I was no exception. My family, Wife, Mom, kids were no exception. Because if he can’t get to you then he will do what he can to get to you through your family. I experienced this almost immediately.   But I also knew there was two ways in which to see every situation. I could see it through the Lords eyes or I could allow the Devil to tempt me into believing the SyFy version of the situation.  It was a fight from the very beginning. The devil was on me from the moment I made that decision. Not a day went by that he didn’t tempt me or attempt to scare me into not believing the Lord had the power to heal my body.

MIRACLES ARE REAL and GOD STILL DELIVERS THEM

As mentioned on page one, I was diagnosed with Stage IV Burkitts Lymphoma on August 2nd 2015 and was CANCER FREE on September 25th, 2015, 49 days later. Dr. Herman called it an anomaly. Dr. Oglesby said he had never seen anything like it. Not just the recovery time, but the lack of serious side effects and the consistency my blood counts throughout the entire process.

During some of the times I have shared my story I have been asked by a few people a very difficult question. I have been asked “Why is it my son, mom, aunt, cousin, friend, didn’t make it? They were Christians and they believed and had faith. So why did God not heal them?” I don’t have an exact answer to that question. I know that sometimes the Lord heals someone to be an example for others. To help others grab onto their own faith and develop a closer relationship with God. So I have to believe that it is also in his plan to take some of us home to have that same impact. I wish I had a better answer for those who’s family members didn’t make it. What I can tell you is it does not mean they had any less faith than anyone else. Sometimes I think God just brings his children home. Sometimes he allows us to see the reason for that persons sacrifice and it helps, and then sometimes he doesn’t. One thing I know for sure is that God loves all his children and is always going to do what is best for them as any parent would. I also know that those who have left us are in heaven and there is no way to compare an eternal life in heaven to a mortal life on earth. On the earth we deal with the earthy restrictions of faith every day. It seems at times that the moment we confess something with our mouths in the name of Jesus Christ the devil is on the scene to steal it away.

According to the Medical Community I should have experienced serious side effects from the chemo and drugs given during treatment. They kept looking for them to creep up in my blood work. However, each morning they would come in and tell me my numbers were good. My red counts, white counts, platelets, uric acid, and blood cultures. There were however a few major concerns that came up and these are the concerns that I believe God had the opportunity to show his grace in all abundance.

CONCERN 1

The Doctors first major concern was that my Kidneys were going to shut down because the cancer was dying so fast in my body that it was clogging up my system. They brought in a kidney specialist, he gave me some medicine and hung out with me for a few days and then everything stabilized. However the rate at which I was killing the cancer cells did not. My Kidneys just hung in there and kept pumping the cancer out of my body.

MIRACLE ALERT: The normal steps that would have been taken would be for the Doctors to simply put me on dialysis. This was something the Doctors believed was coming soon with the rate at which I was flushing the cancer. I remember praying about this very thing. I asked the Lord to open my kidneys and allow just the medicine to do what was necessary to flush the cancer. I never saw a day on dialysis.

CONCERN 2

There second biggest concern was my face drooping on the left side and the double vision I was having. I’m not talking a little droop. I looked like a basset hound on one side of my face. I wasn’t just seeing double; I was seeing double with one set of doubles higher than the other. This was also during my first treatment. Again they brought in a Neurological specialist who at first was very concerned and believed the cancer had gone to my brain prompting him to order a CAT scan. If the Cancer had gone to my brain they were going to have to drill a hole in the top of my and put the chemo directly in through a port going straight to my brain. This worried almost everyone. This is understandable. Nobody wants a hole in your head. That one thing in itself brings up a whole other host of complications. So off to the CAT scan I went.

MIRACLE ALERT: I saw Jesus lying next to me in that tube. He simply smiled at me. He didn’t have to say a word. The look on his face was a very happy “Man, aren’t they going to be surprised”. This told me there would be nothing in that scan.   Sure enough the scan was clear. No Cancer. In fact they had found that the Burkitts had not touched a single organ in my body other than the small mass on the outside of my small intestine, the omentum around my abdomen and my bone marrow.   The droop went away and so did the cancer.

CONCERN 3

The third biggest concern that came from the doctors concerned the mass that was on the outside of my lower intestines and the rate at which it was dissolving. I saw this as a good thing. The concern for the doctors was that the tumor could be metastasized to the small intestines and with the rate at which it was dissolving it could dissolve faster than the small intestine would have to heal the holes that would be left behind. This would leave a 5cm hole in my small intestines allowing waste to flow out into the body cavities. This in turn would cause a host of complications, infections, possible organ failure, and definitely surgery. The question was do we operate now or wait to see if it actually leaves a perforation. Scary…no doubt.

MIRACLE ALERT: The rate at which my cancer cells were dying and flushing did not slow down. The family went to the Lord in prayer and asked the Lord to ensure there was no perforation in the small intestine once the mass was gone. We all agreed the Lord could make this happen. When my PET scan came back the tumor on the small intestine was gone and there were no perforations. It was the best case scenario one could have.

THE LORD WILL ALWAYS BRINGS THOSE AROUND YOU WHO YOU NEED AT THE EXACT TIME YOU NEED THEM

I would like to appreciate the unconditional love I received from family and friends. This love from my Mom, Wife, Brother, Sister in law and my Boys and my Aunt Steva. My Mom and Wife haven’t left my side since day one. I lived at my Mom’s house for most of the trips in between hospital stays and she was at the hospital with me from the first day to the last. Which was awesome because she is a loving Mother, but she is also a fantastic cook. Elaina, my Wife, has been a spiritual rock for me. Reminding me during times I was not my spiritual best that God was in control. She cried with me, kissed me, laid next to me on the bed, made me laugh, and kept me focused on Jesus. My Brother and Sister In Law stayed with me my first week in the hospital. My Brother would pray for me every day and I always got a copy of that prayer on face book or text. My Aunt Steva was the first to respond to anything I put out there on social media and constantly lifted my spirits. Cindy Stone for sending me a card every day just to let me know she was thinking about me. She is an awesome person. Richard Barry for the times he came up to the hospital to sit with me and catch me up on all the stuff in life I was out of the loop on. Mike Barnes who shaved his head, twice, to show his support for me. My Uncle Joe Lynch who shaved his head as well. To the soldiers who came to the hospital to see me from my unit, it meant the world to me. Josh Philllipi who literally bought me a game system to keep my mind off things. The games he got me…Mortal Combat, Call of Duty, it’s the soldier in us. My boss Patrick Henderson who came immediately to pray with the family and set the tone for the battle ahead. Elaina’s work colleagues who raised over $900.00 for our family. To all of my friends and family who sent me the encouraging words on facebook each and every day. If I have missed someone here I apologize. The outpouring was so great and the prayers so many that it was very difficult to keep up with. But I want you to know that all your prayers made the difference. So anytime anyone asks me to pray for them I never take it lightly. I love you all.

In total I had 576 Hours of chemotherapy over 5 months. That would be 14 forty hour work weeks. It’s a lot of a toxic chemical over a short period of time. We prayed and asked God from the very beginning that the chemo not cause any serious side effects. I lost my hair, had some stomach aches, some tingling in my toes and fingers, some memory loss and some constipation. All of which the doctors and nurses say will correct themselves. No organ failure, no damage to my nervous system, no damage to my skeletal system, and no damage to my circulatory system. This is not the case for so many people who go through cancer treatment. I’m sure you have heard that if the cancer doesn’t kill you the treatment will. The Lord placed a shield around me from day one. I could feel his presence and his power on day one and still do today.   He has never left my side, and it lets me know that until the day I die in my sleep as an old old man, I am to get this story out to anyone who will listen. It is a story of Faith in our Lord Jesus Christ and that he will keep the promises he has made to us. It is also a story about the simple fact that God still performs Miracles.

I was diagnosed with Stage IV Burkitts Lymphoma on August 2nd 2015 and was CANCER FREE on September 25th, 2015, 49 days later. Dr. Herman called it an anomaly. Dr. Oglesby said he had never seen anything like it. Not just the recovery time, but the lack of serious side effects and the consistency of my blood counts throughout the entire process. I called it a miracle. During this short period of time the Lord showed me what the faith of a mustard seed can do and how it can grow to change a person’s life forever. I understand not everyone’s faith is in the same place spiritually. Just remember that Jesus will meet YOU where YOU are at, just as he did with me. I am sharing my testimony with anyone who would listen because the Lord has asked me to do just that.

Please contact me if you would like me to share this Testimony in person with your church, youth group, Sunday school class, bible study group or any of the like. I am very experienced at public speaking due to my exposure in my civilian occupation. I am a born again Christian and love the Lord.

Rian Short

918-884-9705

Jerry DeLeon Fight

imageHi my name is JoAnn DeLeon. Jerry DeLeon, my brother has always been an amazing brother and person . He is a loving, caring, and compassionate individual who loves life and will help anyone in need. He has so many people in his life that have the best memories and regard for him. About two weeks ago he was complaining about back pain the doctors would give him steriods and pain medicine which did not help. After two weeks he finally went to a different hospital emergency room they ran tests on him and pre diagnosed him with cancer. Further testing would confirm he has Burkitts Lymphoma Cancer. Within a few days he went from stage 2 to stage 5. Meaning the Cancer has been detected in his marrow and brain. The doctors have started him on very aggressive Chemotherapy because his Cancer is a very rare and aggressive kind.

Refractory, relapse and recurrence of Burkitts lymphoma

Refractory, relapse and recurrence of Burkitts lymphoma, some layman definitions of words that nobody ever wants to hear.

Refractory Burkitt’s lymphoma is Burkitt’s lymphoma that quit or never responded to chemotherapy, or did, but never went into remission. The cancer becomes chemo resistant through mutations or was just resistant to begin with.

Relapse is when remission is achieved, but the Burkitt’s lymphoma came back. This means that with all modern tests available they were not able to detect any cancer after treatment. The cancer although not detectable with current technology was still there. Current technology can’t detect very small clusters of cancer cells or a single cell and the cancer just simply grew back. This usually happens within the first two years although some might say you’re cured after one, because the chances of relapse can dramatically decrease after one year.

When Burkitt’s comes back after two years it might be a recurrence of Burkitt’s lymphoma, but it is more than likely a new Burkitt’s lymphoma. Meaning it just came back after being cured the first time. They would have to compare the first with the second to tell for sure, but since Burkitt’s grows so fast that after two years it isn’t very likely it was the same Burkitt’s that was there the first time.

One of the good things about Burkitt’s lymphoma is that it can be cured, because it is a fast growing cancer, very fast for that matter. The cells can literally double in just 24 hours. Chemotherapy targets fast growing cells so a lot of times a person can be cured after going through a chemotherapy regimen. The chemotherapy regimens can be brutal and some of the most intense a person can have, because the chemotherapy has to get every one of those fast growing cells and not leave one behind, so you have to repeat the cycles often and might have many cycles of chemotherapy. Burkitts is a brutal disease, but many people are cured at first remission.

Jeff Runyan; Burkitt’s lymphoma patient, five years out from stage IV BL. RCHOP, CODOX-M/IVAC (R), 17 cycles of radiation. Remission June 2009.

Burkitt’s Like lymphoma, Burkitt’s lymphoma or Diffuse Large B-Cell lymphoma?

When I was first Diagnosed with Cancer I was told I had Diffuse large B-Cell lymphoma (DLBCL). Then the samples were sent off to Mayo clinic who has one of the largest clinical laboratories in the world. The pathology report took an additional 14 days to come back from Mayo clinic and they said that it was actually Burkitt’s lymphoma (BL) and my Oncologist said Burkitt’s Like lymphoma (BLL), but while we were waiting I had a round of R-CHOP to save my life. Why is this important? Because the treatment for DLBCL isn’t likely to cure Burkitt’s lymphoma. They immediately stopped the treatment for DLBCL gave me a short time to recover and started me on a treatment protocol appropriate for Burkitt’s lymphoma.

What this means is it isn’t always straight forward when it comes to diagnosing Burkitt’s lymphoma, Burkitt’s Like lymphoma or Diffuse Large B-Cell Lymphoma. If they get it mixed up a person that actually has DLBCL might get high does chemotherapy that they don’t need.  While people that actually have Burkitt’s lymphoma might not get the appropriate treatment that will stop Burkitt’s lymphoma.

This is why the Biopsies are so important for initial diagnosis.  It is up to the pathology lab to get the diagnosis right and in my case where they couldn’t tell exactly what I had they sent it off to someone that could give them clarification and possibly saved my life.

The National Cancer Institute says that Gene expressions can accurately Diagnose Burkitt’s lymphoma according to an article published in 2006.

“The value of molecular profiling to accurately diagnosis Burkitt’s lymphoma versus DLBCL will have a major impact on patients because the treatment for these two lymphomas is very different,” said Louis Staudt, M.D., Ph.D., deputy chief of the Metabolism Branch and head of the Molecular Biology of Lymphoid Malignancies Section in NCI’s Center of Cancer Research, as well as research team co-leader. “If Burkitt’s patients are treated with intensive therapy, there is roughly an 80 percent survival rate. However, if they are misdiagnosed and treated with the therapy recommended for DLBCL, lower intensity chemotherapy, the survival rate is reversed to 20 percent or even less.”

http://www.cancer.gov/newscenter/newsfromnci/2006/burkittslymphomadiagnosis

Jeff Runyan
Stage IV Burkitt’s lymphoma survivor
R-CHOP, CODOX-M/IVAC (R), 17 cycles of radiation.

References;

 

“You have Burkitt’s lymphoma, but it is one of the good cancers.”

Updated 2/24/2017

“You have Burkitt’s lymphoma, but it is one of the good cancers.”  This is a total misconception. There is no good cancer and Burkitt’s is one of the fastest growing ones there is.

“You have Burkitt’s lymphoma.” What the heck is that? That is what my reaction was when I found out that I had Burkitt’s lymphoma. “It’s a type of Non Hodgkin Lymphoma that is very rare and you are the only one in 20 years that the Hospital has seen” My Oncologist said. One of my only questions was, what are my chances of survival? He said “About fifty-fifty,” and according to SEER he was right for my age group and stage.

Burkitt’s is a curable cancer, because it is so aggressive. Chemotherapy targets fast growing cells and Burkitt’s lymphoma is one of the fastest growing there is, so it can respond well to treatment. That said, the five year relative survival rates for all ages combined is just over 60% ( according to SEER otherwise known as “Surveillance, Epidemiology, and End Results Program”) Relative Survival rates are considered the Gold Standard when comes to statistics.

This cancer spreads so fast that it can get into vital organs very quickly and become wide spread quickly. The chemotherapy is very aggressive and very toxic and are some of the most aggressive treatments there is.  Complications can develop from the protocols. Infections can develop during treatment too especially during the nadir period (When you have virtually no immune system) and infections can be of great concern during the entire treatment process. So besides the cancer, there are other issues that can come about and you know the old saying that the cure is worse than the disease? Well in this case the disease is worse than the cure, but the cure can be very bad.

A recent study by Browns University concludes the older you are the harder Burkitt’s is to beat. It also concludes that the later the stage the harder it is to beat. The younger you are the better the chance of a cure and the cure rates for the very young are much higher than it is for adults.

What does all this mean?

  • If you get Burkitt’s your life is at risk no matter what age.
  • This cancer has to be caught early in order to have a better chance of survival.
  • The younger you are the better the chance of survival, but there are no guarantees.* If the relative survival rate at 5 years is 84% percent for your age group. That means 84 out of 100 make it, but 16 do not.
  • Burkitt’s is a very serious disease, it is curable, but not all are cured and this applies to all ages.

This disease is not to be taken lightly, ever. Yes, it is curable if you have Burkitt’s and you can be cured at any age and any stage, but no matter your age or stage make no mistake you are at risk.

Jeff Runyan
Stage IV Burkitt’s survivor in remission.
R-CHOP, CODOX-M/IVAC-R, 17 cycles of radiation.
References;
https://news.brown.edu/articles/2013/08/lymphoma

https://seer.cancer.gov/csr/1975_2013/results_merged/sect_19_nhl.pdf

Our facebook group Question and answers, some basic rules.

This is a Question and Anwser format for our closed group on Facebook. Just some simple guidelines to follow to help keep the conversations flowing.

https://www.facebook.com/groups/BLSociety/

The Burkitt’s Lymphoma Society Private Group has grown large and to help moderate it here is some basic information and rules to follow to help keep the conversations flowing. If a problem exists that you can’t resolve please take it up with an administrator and they can be found at this link. https://www.facebook.com/groups/BLSociety/admins/?order=defaultor
Alternately you can email admin@burkittslymphoasociety.com.

All your medical advice should come from your doctor, the information in our group is meant to be educational and not meant to be a substitute for medical advice from your Doctors or medical advice of any kind.

This group is also Facebook, although it says Burkitt’s Lymphoma Society Private Group, it is subject to Facebook terms of use and policies https://www.facebook.com/policies/?ref=pf . Anyone can see who is in this group, but only members can see the posts even when they show up in your news feeds, but private is not meant as privacy.

About our Facebook Group and some basic rules.

Burkitt’s is a rare form of cancer with unique characteristics and treatments. The experience of others can be useful, but everyone is unique so everything varies from person to person including treatments, severity, side effects and outcomes.

Our group is an informal support and advocacy group for Burkitt’s Patients and Caregivers both past and present as side effects can last a lifetime as well as the experience. We are here to support you as fellow cancer patients and caregivers by sharing our own personal experiences.
We ask that the group members respect others feeling and emotions, the experience with cancer can be devastating, life changing, or just a small glitch in your life, it varies from person to person, so each person’s situation is unique although the cancer might be called the same.
This form of cancer can affect anyone at any age or any race or any country, it simply does not matter. This group contains people of all ages and from all places, from the age 13 and up, so please keep that in mind when posting content. We hope you enjoy our group and find the information and support you seek from it.
© All rights reserved

Questions and Answers.

Q. Can I post links?

A. Yes, but only if it is directly related to helping someone in a comment, or directly related to BL in some way. But links are subject to removal. We try to allow a reasonable view period of 48-72 hours for most links, but we encourage you to not post links as posts and this will help people on mobile devices sort through posts. If we allowed everyone to post links as posts our group would be focused more on links rather than sharing with patients and caregivers in their posts.

Q. Can I post pictures?

A. Yes, we welcome pictures of appropriate content.

Q. Can I post anything I want related to Burkitt’s lymphoma?

A. Yes, you can post any question or anything related to Burkitt’s lymphoma, but if its a link refer to our link policy.

Q. Can I advertise anything?

A. No, we do not allow advertising anything and advertising will be removed and spam type advertising will result in a ban. This also includes fundraising. Fundraising  can be an important aspect for a Burkitt’s patient, but fundraising in the group is not conducive for the group. There are several reasons for this. 1.  We are not equipped to verify fundraising.  2. We are an international group.  3. We do not want to over burden the group with advertising and fundraising pages.
People are allowed to advertise on our Public Facebook page in the posts by othrs section, but in the closed group it isn’t allowed.

Q. Can I use derogatory remarks against another member or call them names, use innuendos or demeaning comments?

A. No, and neither can anybody else, and those posts will be removed and a warning issued and repeat offenses could result in removal from our group.

Q. How do I handle a member I don’t like?

A. You could block them or ignore them, to learn how to block someone follow this link.
https://www.facebook.com/help/168009843260943#How-do-I-block-someone?

Q. Who can remove posts and comments?

A. Admins can remove posts and comments or the person who wrote them can. To learn how to delete or edit a comment follow this link. https://www.facebook.com/help/105443102880679
To learn how to remove a post or edit a post follow the link. You can edit or remove your own post in our group or contact an admin and ask that the post be removed.

Q. What can I say in a post or comment?

A. Anything you want, you are responsible for your own posts and comments, just follow the basic guidelines we have laid out.

Q. The Burkitt’s lymphoma Society group posts are taking up all the space in my news feeds. How can I adjust my notifications settings?

A. For our group take a look at this link, notification settings are under the notification tab at the top of the page. https://www.facebook.com/help/187225274663021#How-do-I-edit-my-notification-settings-for-a-group? You can also go to your account settings, then scroll to notifications, then scroll to group posts, select the group and adjust what you get on your feeds