Rare Disease Report
Physicians
Physicians
Patients & Caregivers

Faith and Surviving Cancer

MAY 15, 2016
In balancing holistic needs for patients with rare disease, an atypical case scenario is offered to illustrate the role of faith in the art of healing. Pastoral perspectives from front line expert and atypical Burkitt’s lymphoma survivor, Fr. John Williamson of the Baltimore Archdiocese in Maryland, are explored in the therapeutic approach to the road to recovery.

Fr. John recently commemorated a milestone anniversary in March 2016, marking a two year remission from this aggressive neoplasm that has been coined “one of the fastest growing malignancies in humans.1”  The occurrence of Burkitt’s lymphoma is only 1 in every 30-50 people within a spectrum of overlapping immunophenotypes among the larger, heterogeneous realm of non-Hodgkin lymphoma (NHL).2 Classification has been described as “somewhat elusive, partly because of the rarity3” and complex morphology; thereby underscoring accurate diagnosis as an imperative for defining the most optimal treatment regimen.4  Complicating matters are the variant forms of Burkitt’s lymphoma, which are categorized by 3 types. These include endemic (observed in Africa and associated with Epstein-Barr Virus);5 sporadic (observed in the Western world in 1-2% of NHL in adults and 30-50% of NHL in children);6 and immunodeficiency-associated Burkitt’s lymphoma (encompassing, but not limited to HIV infection and congenital immunodeficiency).7
 
Burkitt’s lymphoma is considered a “therapeutic emergency8” among medical establishment and intensive, complex chemotherapy cocktails put patients at risk for an array of secondary complications; such as leukemias, infertility, and potentially fatal infections.9 

Fr. John’s treatment regimen included both IV and CNS-targeted chemotherapy, such as intrathecal administration of the agent Cytarabine with known bone marrow suppressive effects and associated major toxicities of anemia, bleeding, leukopenia, and thrombocytopenia.10 Hence, intense clinical monitoring was of paramount importance given the potential for multi-system organ damage due to various nephrotoxicities, neurotoxicities, pulmonary and/or cardiotoxicities depending on the other choice combination of agents. Compounding the patient experience of alopecia, loss of appetite/nausea, parasthesias and signs of myelosuppression, additions to Fr. John’s chemotherapy regimen included a host of many other drugs. Therapeutic approach involved use of corticosteroids (prednisone, hydrocortisone) and the agent Rituximab, a monoclonal antibody with orphan designation for non-Hodgkin B-cell lymphoma that mediates cell killing through a variety of complex mechanisms.11  Prophylactic agents for chemotherapy-related side effects included IV Leucovorin for Methotrexate induced anemia and Mesna for Cyclophosphamide induced hemorrhagic cystitis due to urotoxic metabolite. The pharmacy profile also contained antibiotics to reduce the risk of infection, the growth factor Filgrastim for severe neutropenia, as well as other drugs that painted a grim picture of the severity of the disease state. 
 
While genetics may be a contributing factor to age-related heterogeneity in pathogenesis and outcomes,12 adults in particular have been associated with more inferior outcomes compared to children with this disease.13 Despite the daunting, devastating disease manifestations and intensive treatment regimens, prognosis does look favorable with a reported cure rate approximately 60-75% in adults treated with short, multi-agent, systemic and intrathecal chemotherapy14 as discussed in the example above. However, prognosis is patient driven and variable. Although consideration to age and factors at clinical onset are determinant factors in the clinical course,15 patient support is critical in balancing both the biological and spiritual needs on the path to recovery.  Role Reversal: The Road to Remission            
“The LORD replied, my precious, precious child, I Love you and I would never leave you! During your times of trial and suffering when you see only one set of footprints, it was then that I carried you.”  - Footprints
 
In the case of Fr. John Williamson, the road to a differential diagnosis for Burkitt’s lymphoma was complicated by a fight with testicular cancer three years prior. When the Burkitt’s lymphoma symptoms first became manifest, scar tissue was mistakenly thought to be the underlying etiology for a bowel blockage which landed him in the emergency room during September 2013. Although the predilection for abdominal symptoms are a common finding in Burkitt lymphoma, imaging studies failed to detect a tumor. And, it wasn’t until November 2013 that exploratory surgery for another bowel blockage revealed malignancy and a secondary tumor was uncovered in the lymph upon full body CT scan.  Fr. John continued to mystify the team of oncologists and hematologists who performed a battery of tests in the quest for definitive answers and rule out of etiologies for variant subtypes. His disease manifestations were without evidence of the tumor in the bone marrow. The atypical clinical presentation stumped doctors with his age, Anglo American origin, and lack of tumor aggressiveness; which is associated with better response rate to chemotherapy.   During this time, Fr. John was adamant for his life to not be on hold for what was anticipated to be a very long and trying 16 weeks and prayed this not be positive for Burkitt’s lymphoma. However, on December 18, 2013, the disease which is stereotypically defined by the terms “death’s door16”unmasked itself. While treatment for this life-threatening emergency is usually immediate, Fr. John went “AMA” (against medical advice). He delayed chemotherapy with fervent and unwavering commitment to the priesthood mission of servitude, mercy and compassion for others and his parishioners until after the Christmas day celebration. And, by the grace of God and in the image of God, Fr. John humbly accepted his new role as patient on December 26, 2013 in only “two days after celebrating six Masses on Christmas Eve.17 
 
While treatment commenced for this Shepherd, a long road of role reversal on the path to remission was much burdened by multiple, aggressive chemotherapy cycles, hospitalizations and outpatient infusions, feelings of isolation, and the suffering of serious, life threatening infection before being pulled from the prongs of despair.  His strong devotion to the Blessed Mother as a devout of Lourdes became manifest in the intercessions of over 500 parishioners and their gift of prayer.  Sales of Novena prayer booklets and prayer bracelets buttressed their faith and catalyzed the healing of Fr. John.  And, shortly following the conclusion of the last round of chemotherapy in March 2014, prayers were answered with the gift of love.  In a May 2014 publication by Catholic Review, Fr. John declared: “by the grace of God, I am cancer free. The hand of God was in this all along.  I feel good.18

Faith at the Foothills

“Set your minds on things that are above, not on the things that are on the earth.  For you have died, and your life is hidden with Christ in God.” – St. Paul, Colossians 3:2-3
 
Although the oncologists referred to him as the “poster boy19” of how people could go through grueling chemotherapy, Fr. John struggled being the patient.  Having his own mother care for him within the confines of the rectory clashed with his principles on autonomy of care and being of service to others.  He felt isolated at times, yet was always surrounded by his immediate family and outpouring support of his church family.  At the hospital, there was some comfort to be found among two other active cases of Burkitt’s lymphoma and knowing he was not the only person to walk this road. However, he still experienced fear in the uncertainty of outcomes for a disease with high recurrence rate, debilitating suffering and no cure to be found among God’s gift of medicine. Having to relive the process again in the event of treatment failure tested his humanity and strength. He was young and in his early 40s, grounded in faith, and determined; but his spiritual endurance was further challenged by the death of his beloved aunt while still in the midst of his own treatment.    
 
Fr. John attributes his resilience and paradoxically finding light among darkness to keeping things in perspective and having a share in God’s grace. In balancing the mind, body and spirit, Fr. John described having a greater appreciation and sympathy for people facing struggles and intense pain without faith.  This is reaffirmed in the Pastoral Letter from the Catholic Bishops of Maryland which states, “As believers, we do not deny the reality of suffering or despair at the approach of death.  Faith in Christ eases the pain of human suffering and anxiety over our mortality.20” However, it is quite challenging to understand the value of Catholic vision and keep focused perspective that God can use pain for something good while experiencing it firsthand. In retrospective reflection, acceptance is easier said than done. Fr. John gives recognition to the fact that there is no magical moment to understanding the mystery of redemptive suffering. However, he offers the Resurrection of Christ as a humanizing representation and devotional image that illuminates God’s greater picture for us as “ordinary humans having a role in the history of salvation.21” 
 
Fr. John also invokes divine inspiration from the Pieta, an artistic work of Michelangelo depicting the Blessed Mother holding the dead body of her son, Jesus. Although it may be difficult to apprehend comfort following the crucifixion of Christ and to see symbolic beauty in death, Fr. John explains the spiritual significance behind the Passion as part of a greater journey to the exalted state.  It is almost cyclic in nature, with faith having a most integral role in restoring balance. We cannot escape the path of pain and suffering, nor do we have the answers or explanation to how God communicates Himself through eternal cycles of renewal, transformation, and humanistic expression. However, a share in God’s grace can be viewed as a share in His suffering if we change our perspective. 
 
Fr. John’s story of hope is nothing short of a miracle and living testimony that patients can prevail. His pilgrimage of faith has inspired others with a means to “channel something horrible into something good.22” The value of redemptive suffering commands a sense of trust in God and belief in the bigger picture. The path was put before us and modeled by Christ in the mission of servitude. Skeptics may disagree, but the Catholic vision is clear on the rewards to be gained in following the example of faith as heirs to the kingdom. In the words of Fr. John, “when God is distant, he is there. When there is pain, there is glory. When there is nothing to ground you, there is nothing to give you hope.23

Sources

1 Ali H Kanbar, MD; Chief Editor: Emmanuel C Besa, MD.  Burkitt Lymphoma and Burkitt-like Lymphoma, http://emedicine.medscape.com/article/1447602-overview  updated April 8, 2016, p3 quoted in Blum KA, Lozanski G, Byrd JC. Adult Burkitt leukemia and lymphoma. Blood. 2004 Nov 15. 104(10):3009-20. [Medline]  accessed 4/17/2016
2 Lymphoma Association. Burkitt lymphoma, 2014 edition http://www.lymphomas.org.uk/printpdf/2308 last reviewed November 2014, p2 accessed 4/19/16
3 Thomas DA, O’Brien S, Faderl S, et al. Burkitt Lymphoma and Atypical Burkitt or Burkitt-like Lymphoma: Should These be Treated as Different Diseases? Published in final edited form Current hematologic malignancy reports. 2011;6(1):58-66. doi:10.1007/s11899-010-0076-4. Curr Hematol Malig Rep. Author manuscript; available in PMC 2015 Apr 13 p2
4 Thomas DA, O’Brien S, Faderl S, et al. Burkitt Lymphoma and Atypical Burkitt or Burkitt-like Lymphoma: Should These be Treated as Different Diseases? Published in final edited form Current hematologic malignancy reports. 2011;6(1):58-66. doi:10.1007/s11899-010-0076-4. Curr Hematol Malig Rep. Author manuscript; available in PMC 2015 Apr 13 p5 quoted in LaCasce AS, Kho ME, Friedberg JW, et al. Comparison of referring and final pathology for patients with non-Hodgkin’s lymphoma in the National Comprehensive Cancer Network. J Clin Oncol. 2008;2001:181–184. The overall pathological discordance rate for five B-cell NHL subtypes was 6% for 731 cases; the highest concordance rate was for DLBCL. Therapy would have been altered for 80% of the discordant cases. [PMC free article] [PubMed]
5 Thomas DA, O’Brien S, Faderl S, et al. Burkitt Lymphoma and Atypical Burkitt or Burkitt-like Lymphoma: Should These be Treated as Different Diseases? Published in final edited form Current hematologic malignancy reports. 2011;6(1):58-66. doi:10.1007/s11899-010-0076-4. Curr Hematol Malig Rep. Author manuscript; available in PMC 2015 Apr 13 p3
6 Thomas DA, O’Brien S, Faderl S, et al. Burkitt Lymphoma and Atypical Burkitt or Burkitt-like Lymphoma: Should These be Treated as Different Diseases? Published in final edited form Current hematologic malignancy reports. 2011;6(1):58-66. doi:10.1007/s11899-010-0076-4. Curr Hematol Malig Rep. Author manuscript; available in PMC 2015 Apr 13 p3 quoted in Blum KA, Lozanski G, Byrd JC. Adult Burkitt leukemia and lymphoma. Blood. 2004;2001:181–184 [PubMed]
7 Thomas DA, O’Brien S, Faderl S, et al. Burkitt Lymphoma and Atypical Burkitt or Burkitt-like Lymphoma: Should These be Treated as Different Diseases? Published in final edited form Current hematologic malignancy reports. 2011;6(1):58-66. doi:10.1007/s11899-010-0076-4. Curr Hematol Malig Rep. Author manuscript; available in PMC 2015 Apr 13 p3
8 Orphanet: Burkitt lymphoma. http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Expert=543& Last updated: 2016-05-10, accessed 4/17/2016
9  Ali H Kanbar, MD; Chief Editor: Emmanuel C Besa, MD.  Burkitt Lymphoma and Burkitt-like Lymphoma, http://emedicine.medscape.com/article/1447602-overview  updated April 8, 2016, p6. accessed 4/17/2016 
10 MicromedexR 1.0 (Healthcare Series), (electronic version). Truven Health Analytics information, http://www.micromedexsolutions.com, accessed 5/5/2016
11 MicromedexR 1.0 (Healthcare Series), (electronic version). Truven Health Analytics information, http://www.micromedexsolutions.com, accessed 5/5/2016
12 Ali H Kanbar, MD; Chief Editor: Emmanuel C Besa, MD.  Burkitt Lymphoma and Burkitt-like Lymphoma, http://emedicine.medscape.com/article/1447602-overview  updated April 8, 2016, p5 quoted in Havelange V, Pepermans X, Ameye G, Théate I, Callet-Bauchu E, Barin C, et al. Genetic differences between paediatric and adult Burkitt lymphomas. Br J Haematol. 2016 Apr. 173 (1):137-44 [Medline]  accessed 4/17/2016
13 Ali H Kanbar, MD; Chief Editor: Emmanuel C Besa, MD.  Burkitt Lymphoma and Burkitt-like Lymphoma, http://emedicine.medscape.com/article/1447602-overview  updated April 8, 2016, p5 quoted in Blum KA, Lozanski G, Byrd JC. Adult Burkitt leukemia and lymphoma. Blood. 2004 Nov 15. 104(10):3009-20. [Medline]; Magrath I, Adde M, Shad A, et al. Adults and children with small non-cleaved-cell lymphoma have a similar excellent outcome when treated with the same chemotherapy regimen. J Clin Oncol. 1996 Mar. 14(3):925-34. [Medline]; Kantarjian HM, Walters RS, Keating MJ, et al. Results of the vincristine, doxorubicin, and dexamethasone regimen in adults with standard- and high-risk acute lymphocytic leukemia. J Clin Oncol. 1990 Jun. 8(6):994-1004. [Medline]; Ostronoff M, Soussain C, Zambon E, et al. Burkitt's lymphoma in adults: a retrospective study of 46 cases. Nouv Rev Fr Hematol. 1992. 34(5):389-97. [Medline]; Hoelzer D, Ludwig WD, Thiel E, et al. Improved outcome in adult B-cell acute lymphoblastic leukemia. Blood. 1996 Jan 15. 87(2):495-508. [Medline]; McMaster ML, Greer JP, Greco FA, Johnson DH, Wolff SN, Hainsworth JD. Effective treatment of small-noncleaved-cell lymphoma with high-intensity, brief-duration chemotherapy. J Clin Oncol. 1991 Jun. 9(6):941-6. [Medline]; Soussain C, Patte C, Ostronoff M, et al. Small noncleaved cell lymphoma and leukemia in adults. A retrospective study of 65 adults treated with the LMB pediatric protocols. Blood. 1995 Feb 1. 85(3):664-74 [Medline].
14 Thomas DA, O’Brien S, Faderl S, et al. Burkitt Lymphoma and Atypical Burkitt or Burkitt-like Lymphoma: Should These be Treated as Different Diseases? Published in final edited form Current hematologic malignancy reports. 2011;6(1):58-66. doi:10.1007/s11899-010-0076-4. Curr Hematol Malig Rep. Author manuscript; available in PMC 2015 Apr 13 p6 quoted in Blum KA, Lozanski G, Byrd JC. Adult Burkitt leukemia and lymphoma. Blood. 2004;2001:181–184 [PubMed]; Kenkre VP, Stock W. Burkitt lymphoma/leukemia: improving prognosis. Clin Lymphoma Myeloma. 2009;9(Suppl 3):S231–238 [PubMed]
15 Thomas DA, O’Brien S, Faderl S, et al. Burkitt Lymphoma and Atypical Burkitt or Burkitt-like Lymphoma: Should These be Treated as Different Diseases? Published in final edited form Current hematologic malignancy reports. 2011;6(1):58-66. doi:10.1007/s11899-010-0076-4. Curr Hematol Malig Rep. Author manuscript; available in PMC 2015 Apr 13 p6 quoted in quoted in Blum KA, Lozanski G, Byrd JC. Adult Burkitt leukemia and lymphoma. Blood. 2004;2001:181–184 [PubMed]; Kenkre VP, Stock W. Burkitt lymphoma/leukemia: improving prognosis. Clin Lymphoma Myeloma. 2009;9(Suppl 3):S231–238 [PubMed]
16 Rev. John A. Williamson VF, Pastor.  Interview with author April 21, 2106, St. Augustine Church, Elkridge, Maryland                        
17 Elizabeth Lowe, Cancer-free Baltimore Priest humbled by support of parishioners, Catholic Review, May 24, 2014, http://www.catholicreview.org/article/home/cancer-free-baltimore-priest-humbled-by-support-of-parishioners   accessed 4/19/2016 
18 Elizabeth Lowe, Cancer-free Baltimore Priest humbled by support of parishioners, Catholic Review, May 24, 2014, http://www.catholicreview.org/article/home/cancer-free-baltimore-priest-humbled-by-support-of-parishioners   accessed 4/19/2016 
19 Rev. John A. Williamson VF, Pastor.  Interview with author April 21, 2106, St. Augustine Church, Elkridge, Maryland                        
20 A Pastoral Letter from the Catholic Bishops of Maryland, “Comfort and Consolation Care of the Sick and Dying,” 2007, p42 www.mdcathcon.org
21 Benjamin Gerritsz. Cuyp, The Resurrection of Christ  (oil on panel), caption to fine arts collection, gallery display at Rhode Island School of Design, Providence, Rhode Island May 2016
22  Rev. John A. Williamson VF, Pastor.  Interview with author April 21, 2106, St. Augustine Church, Elkridge, Maryland                        
23 Rev. John A. Williamson VF, Pastor.  Interview with author April 21, 2106, St. Augustine Church, Elkridge, Maryland               

Copyright © RareDR 2013-2017 Rare Disease Communications. All Rights Reserved.