8/20/2017 Update - May I first say thank you to all my neighbors, friends and well-wishers who supported my kids in their fundraiser garage sale to aid in my pursuit of a stem cell transplant.
My wife and I are back from a grueling three week stay in New York where I underwent the preparational phase for stem cell transplant. I was mildly surprised at the vast array of persons that have and/or are affected by some form of cancer. I was also strengthened by the power many demonstrated in their battle against such a dread disease. I have completed the first phase of my journey - bone marrow biopsy, mri, scans, stem cell harvest and that awful chemotherapy. Now I am preparing to complete the final phase in the next few weeks - in hospital chemo, stem ccell transplatation and 3- weeks on in hospital immune system monitoring.
The New York experience was only rivaled by the cost of living. We spent an average of $60.00 per day on transportation and food. Even though the subway was an option for transportation, my doctor would not let me expose myself to the vast subway crowds due to my compromised immune system. The cost will probably remain around the same when we return, so any thing you can contribute would be greatly appreciated. Thanks for your support.
Hi. My name is Larry, and I am a Multiple Myeloma patient. Presently, I am in the preparatory stages of traveling from Warrenton, Virginia to NYC for a stem-cell transplant at Mount Sinai Hospital under the direction Dr. Bart Barlogie – can’t help but love this guy.
When I was employed, I worked as a Bi-vocational pastor and worked full-time with emotionally/behaviorally challenged children and youth. I have a Master and Doctorate of Divinity, dual Masters in Professional Mental Health and School Guidance Counseling, a Master’s in Human Resources and a Bachelor in Public Administration, nevertheless; I would trade it all for the possession of perfect health.
Anyway, my family and I were originally evacuated to Virginia from New Orleans when Hurricane Katrina hit the city. Since then, my wonderful wife and our four children have called Virginia home.
I was diagnosed with Multiple Myeloma in the latter part of 2013. I’d received a call from Childhelp, Inc., in Lignum, Va. Someone recommended me as a good fit for their treatment team responding to youth struggling with behavioral and emotional challenges. Be that as it may, I wasn’t certain if I wanted the additional stress beyond the church ministry work I was already involved in. And even as I share this, the memory is so vivid it causes the hairs on the back of my neck to rise. It wasn’t a voice but rather what I might describe as an internal prompting. I felt then and believe even now, the prompting was a leading to accept the job and go take the required physical. This prompting came consistently throughout the week until I finally resigned myself to get it done. I grabbed the paperwork and went to the assigned walk-in clinic. And it was there, after my labs were drawn and analyzed that the abnormality in my blood was detected. The rest is history. I then returned to my regular physician who then referred me to my oncologist. A bone marrow biopsy was performed yielding a positive result which was later confirmed by clinicians at John Hopkins. Needless to say, I was still in shock throughout the entire process. I kept saying to myself, “I really have cancer; I can’t really have cancer.”
Since then I’d gone into remission and at my six-month checkup, May 2017 my labs indicated that the cancer had returned. I must admit my wife and I were a little disappointed, but my oncologist had already previously informed that this was an incurable form of cancer, and evidence-based research had hitherto demonstrated that it always returns.
Then there’s my wife – what can I say about her. The first time I was diagnosed, I did not want to inform my kids. I did not want to interrupt what I considered to be the significant and defining years of their human growth and development. My wife honored that. I remember her telling me after my diagnosis ‘ Honey, we’ll make it through this together, you and I." And may I say she has been my faithful rock. Even in remission, I was constantly fatigued and my doctor would not let me work. Even so, my wife continued to get up at 430am every day and went into DC for work. She’d arrive home every evening at 6pm, check on everyone, be certain I’d taken my medication, spend time with each of our children, go to bed around 11pm and get up and do it all over again the next day. Nevertheless, she never complained, and she’s had to support a family of six by herself the last four years. I can’t thank you enough honey for standing with me. No man could be blessed with a better wife! WOW!
I’ve just recently informed all our kids about my medical condition, as I believe they are now old enough to understand and mentally process my sickness and its familial impact through their own world view lens.
Ok, so now that you know a little of my story, why should you fund me?
We all know how common cancer has become and there are a great many people in need of help. So, I can’t, in good conscience present some novel aspect of my person, character or personality which would appeal to you in such a way as to say I am more worthy of funding than others who are suffering in the midst of similar circumstances.
However, I can join in with those of like mind in concurring that a cancer diagnosis essentially places you at a financial and psychological disadvantage. In other words, the world and its associated criteria of paying bills and providing for family member needs do not stop simply because you are sick. As a matter of fact, expenses increase dramatically. Navigating savings, 401s, retirement accounts, etc. is only the beginning of financial expenditures you are forced to explore. Subsequently, as you go through the pre-cancer evaluative phase, treatment determination and application and on-going cancer maintenance, you discover that your insurance has limits of coverage in diverse areas of your policy. All I can say next, is, no one can really relate until they walk in a cancer patient’s shoes. Essentially then, I can only, like others, say how expensive it is in the pre, present and post phases of cancer diagnosis, treatment and stem cell transplantation. For the record,we do have insurance through my wife’s job, but it only pays a percentage of travel/transportation and lodging. Co-pay coverage is also included but is, likewise, limited.
My wife is a wiz at detailing, analyzing and recording data, and what we have discovered is that because it is mid- year, many of the cancer support organizations have expended their funds for this fiscal year.
In reflection, it was really a shock to the doctor, my wife and I when I came out of remission. His shock was so real; it caused my wife and me to turn and gaze at one another in amazement. He immediately said I needed to have a stem-cell transplant but wanted me to once again see Dr. Bart Barlogie in New York at Mount Sinai. So, another reason I am requesting funding is for the 30+ days we have to stay in New York to complete the tedious stem-cell transplant process. Additionally, we would like for my wife to travel home to check on the kids and send them off to their first day of school. However, we would also like her to come home once or twice during my stay for treatment. We really believe that her visit's home would offer the moral and psychological support that only a parent can give.
Lastly, in speaking with the hospital social worker and head transplant nurse, the entire stem-cell transplant process could take up to 40 days and range in cost from $41,000 to $72,000. And, can you imagine the cost of staying in downtown Manhattan for 40 days! Then there is food, travel, clothing, etc. associated with our travel and stay. In the meantime, home associated expenses will still be on-going. Conversely, the children will still need to eat in our absence, buy some clothes in preparation for returning to school and regular household bills – mortgage, electric, water, trash removal, etc., will still be required to be paid. How can we take care of both financial issues facing us without feeling overwhelmed and psychologically distressed? In our financial state, something will suffer dramatic loss and/or failure as we cannot fiscally maintain both. I really want to focus on me, getting through this chemo therapy regiment, stem cell harvest and 8-30 day hospital stay in isolation. I doubt I will have the strength and required will power if I know my kids are suffering and/or something is left unpaid on the home front.
If you can relate to my story and would like to help out, you may do so by doing two things for me. First of all, pray for my wife, my children and finally myself. Pray that we as a family, might allow this tragic challenge to bring us closer together, that each of us may be more grateful for every day of life and possess the courage and strength to persevere and beat cancer as a team. And secondly, should you choose, we would like you to make a financial contribution to our cause. No one ever expects to get cancer; however, when it does come, meeting the challenge is oftentimes in the form of monetary expenditures.
In closing, may I say that I was very fearful and anxious when I was first diagnosed. And in quiet moments of self-contemplation, I really explored my philosophy of life and views of my personal mortality. And at first, I thought the feelings of fear, dread and depression were founded in being afraid of death and dying. However, later, after more thought, I came to realize that I wasn’t frightened of dying, nor even how I might die. What I was distressed about was dying without knowing that my existence meant something. I was afraid that between my being born and my day of death, my legacy would be absent of having accomplished something of grand substance in human service which would give me the satisfaction of knowing my life had not been an empty self-centered life. I need to know that my life mattered, that I had purpose, intent and calculable fulfillment. I thought of my wife and kids, the people I’d met along my life’s journey. The friends and enemies I’d made, the good and bad of it all and I came to the conclusion that only what I deposit in the lives of others could make me feel that my life had meaning. Whether I live or die, I am at this moment overcome with dreadful anguish when I think that I could die without having been involved in some noble, honorable and/or service venture that improved other people’s lives. I just don’t want to have lived a vain self-serving life, its simply not me.
The words to a song sung by Mahalia Jackson best bespeak the sentiments of my personal life philosophy,
If I can help somebody, as I pass along,
If I can cheer somebody, with a word or song,
If I can show somebody, that he's traveling wrong,
If I can help somebody, as I pass along,
Then my living shall not be in vain.
If I can do my duty, as a good man ought,
If I can bring back beauty, to a world up wrought,
If I can spread love's message, as the Master taught,
Then my living shall not be in vain.
Thank you so much for taking time to read my story. My writing it was truly an exercise in therapeutic self-care for me. And thanks again for taking time to meet me and know this: I might have cancer but, cancer doesn't have me!
- Nelson Muma
- Shannon Chierichella
- Caring Neighbor
- Corey Brocke
- Emily Van Camp
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