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The treatment for transformed lymphoma is platinum based chemotherapy and stem cell transplant when R-CHOP has already been used. We pray for a complete response to this chemo regimen so that Pam can go into transplant disease free. We are hopeful the chemo takes care of the aggressive lymphoma completely! As timing is critical in treating this disease, the only possible chance of a cure is to undergo an allogeneic stem cell transplant from a donor. As Pam’s sister is a “perfect” 10/10 match, she will be her donor. The intent of transplantation is cure, yet the statistic is around 60%. We are focusing on 100%! Additionally, an allogeneic transplant does not come without risks as overall survival through year one is approximately 85%-90%. Again, we are focusing on 100%!
The treatment and recovery time for this type of transplant is much longer, so the current plan is that Pam will likely be gone from home for up to six months. As with any medical crisis, we can only pray that our plan stays the course. Even with insurance, the costs associated with Pam’s medical treatment are astronomical. This presents a challenge that Pam and her family cannot meet alone.
To help offset Pam’s uninsured medical expenses, a fundraising campaign in her honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax deductible to the full extent allowed by law, are held by Help Hope Live in the South-Atlantic Stem Cell Transplant Fund, and are administered by Help Hope Live for transplant related expenses only. Please consider a contribution.
We ask that you continue to pray for Pam and her family. Please send positive thoughts and provide well wishes as this comforts them immensely. This has been a difficult journey on so many levels yet they remain optimistic and so blessed by the outpouring of love and support they receive. Your support and prayers are genuinely appreciated.
It's packing day. I'm nervous, scared, sad yet hopeful. We'll leave for NYC tomorrow as a family, spend the weekend with our dear friends, the Cummings, then Dean and the girls will head home on Sunday. I'll stay in NY and start out patient radiation on January 3 then I'll be admitted for conditioning chemo on January 11. My sister will be collecting stem cells on January 17 and my transplant is scheduled for January 18! Thank you friends for your love, prayers and support!
Yesterday I was on a two hour conference call with Be The Match and my sister. As my potential donor, my sister was given detailed information about her role in my transplant. This call made me realize this is very real! I'm not in denial but I will say there have been days when I've questioned if this is really my life. I'm afraid to look at the calendar because I see the days counting down yet I know each day closer to transplant is one day closer to coming home.
On December 28, we will leave Virginia as a family and head to NYC. I have an appointment with a radiation oncologist the morning of December 29. We will meet up with the Cummings for the New Year holiday weekend. Dean and the girls will stay until January 1 and then head home. I start out patient radiation twice per day January 3 through 6 and again January 9 and 10. January 10 is my birthday! I will be admitted to MSK on January 11 and will start a six day regimen of high dose chemo and total body irradiation. Throughout the week prior to January 17, the day my sisters' stem cells will be collected, she will be going through the process of ensuring she has an adequate supply. At the moment, the plan is for me to receive her stem cells on January 18. Please pray that all goes smoothly. I will be in patient for 4-6 weeks at MSK. During this time, I can have visitors so long as they are well and haven't recently been ill. Once I'm discharged from the hospital I will stay at Hope Lodge with my care giver, my best friend Dawn, for at least 100 days which puts me home sometime in May.
Truthfully, I have never been so scared in my life. All I can do is take one day at a time and not think too far into the future. The journey ahead is daunting yet I know I must do this for my family.
Thank you for your support, prayers, good thoughts, positive vibes and love you all have shown our family.
I need to add...I have some amazing friends who are willing to stay with me in the hospital when Dean can't be there. Sarah, Martine, Jean, Jessica Sonia I know we still need details yet I thank you for your offers! And to my best friend of 35 years, Dawn Spaur Neel, she is an angel. You know they say opposites attract, let me say Dawn is the kindest, gentlest soul one could ever be blessed with knowing. She's my care-giver while I'm at Hope Lodge. She said, "Pam, wherever, whenever and for however long you need me, I'm yours!" ❤ A huge thank you to the awesome Camp Kesem WM team too!
What a crazy journey the past 18 months have been! Honestly, it's been almost nine years filled with many bumps in my road since I was diagnosed when Sarah was born. I wish I could say that I'm done with treatment but you all know I've been suffering through making the decision to have an auto (own cells, low risk, high probability of relapse) or allo (donor, higher risk, potential cure) stem cell transplant.
Some new information was shared at ASH which is an annual meeting of sharing new study results in cancer treatments for blood cancer. It became very clear after reading the studies, consulting with many doctors, and talking with Dr Shah, my transplant doctor at MSK (Memorial Sloan Kettering) that the best option for me, long-term, is an allo SCT. Did I fight this decision every step of the way? You bet I did! Who wouldn't want to choose the path of least resistance yet the data doesn't look great. While nothing is a guarantee, my fNHL has been aggressive and transformed to an aggressive lymphoma so I feel I need to do all I can now to attempt to make this go away. Does an allo scare me? Of course. My sister, who has been typed as a 10/10 match, is making her way through her work up as my donor.
While I was a MSK for my work up on Thursday, I got a call from the radiologist who was looking at my CT to let me know I needed to stay put as I have a large blood clot in my lung. I was then sent for an ultrasound where they found a smaller blood clot in my leg. I'm now on Xarelto to hopefully clear these up! Just another chapter in my never ending story of bad news, but it is what it is and I deal with it.
As for my work up, my EKG, ECHO, Pulmonary Function test (even with a blood clot!), etc were all good. My PET/CT was good too showing very minimal residual disease if even that.
I'm scheduled to be admitted to MSK on December 29. I'll be in the hospital for 4-6 weeks then I'll be moved to Hope Lodge for at least another 100 days. MSK is NYC and while we have great insurance, it's scary to think out pocket costs will likely be in excess of $15k. We'll figure this out, I am sure!
Dean and I have yet to figure out the logistics of how we'll handle keeping the girls on task with school and activities yet I know it'll all work out.
I want to say thank you all for your support, prayers, good vibes and care over the past year plus. My journey is far from over and seems almost insurmountable at times. We appreciate your continued thoughts and prayers as we work through our challenges over the coming weeks and months. You all mean so much to us and scaling this huge bump in the road wouldn't be possible without each of you! Blessings to you all!
Without a doubt the most difficult decision I've every had to make. It appears an allo SCT at MSK is back on the table. I'm traveling to NYC today for SCT work up and to meet with Dr Shah. I'm hoping to finalize my decision after this visit. Thank you all for your continue support and prayers.
This past week has been very difficult as I was forced to make a treatment decision with conflicting information. I traveled to MD Anderson this week and met with Dr Nieto. His recommendation, not unlike that of Dr Schuster at UPenn and Dr Sudhindra at Mt Sinai, is to have an autogolous stem cell transplant. This changes the course of my treatment in several ways as I've determined this to be the best path moving forward. An autogolous stem cell transplant uses VERY high dose chemo and then your own stem cells are used as a rescue as opposed to a donor. The biggest factor in my decision was a donor transplant at MSKCC wasn't using high dose chemo and I would have had the possibility of dealing with graft vs host disease. The downside to an auto is it doesn't give the probability of a cure for the follicular lymphoma. I don't have dates yet but as soon as I do I'll share.
Much love from all of us at Williamsburg Smiles! You are in our thoughts and prayers and we can't wait for your healthy return to Williamsburg!
Monica, Nick, Sue, Mandy, Kelly, Barb, and Jen
Pam,
We just want you to know that you have all our prayers, love, hugs and support! You hang in there and know that you do not stand alone. We are all standing with you.
Teresa & Tony Mansy-Cook
Pam & Family
You have all our prayers and support from our family. We are wishing you the best of luck and keep a
positive outlook. We love you.
Aunt Delores and Family
Wishing you the best of health in 2017 and all of the years ahead. Sending prayers your way.
Felicia Neisser
May all you believe in come true. Keep fighting it brings hope to all of us. You rock
Jill Daily heritage
Thinking of you, Pam and sending prayers to you and your sister!! Take good care of yourself - you are priority #1 right now and the family needs you to get healthy so you can be their rock again :)
xo
The Neville's
Naturally I am hoping for the best outcome and I am glad I can do a little something to help. Stay strong Pam, and keep fighting the battle.
Nancy Pavelich
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Pamela Neff
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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