I Can't Live Without You
Transplant Update 5/13/2013
It's been a long, long year from last April when I was diagnosed to this May when I go into the hospital. Another year begins this Sunday, May 19, 2013 when I go into Stanford Hospital for my chemo treatment and stem cell transplant. All I can say is these are interesting times.
I was asked into and have volunteered to enter a stem cell research program at Stanford. The point of the research is to try to lessen or eliminate the possibility of graft-host disease after transplant. Graft host disease occurs when T cells (the disease fighters) in the stem cell donation recognize the new host organs as foreign and begin attacking them. This leads to organ damage (skin, liver etc.) that can be very dangerous, even life threatening.
My transplant physician, Dr. Jonathan Benjamin, tells me the stem cell transplant medical community believes one way to reduce the possibility of these organ attacks is to control the amount and type of T cells introduced into the new host. So, after my brother's stem cell donation is taken, the doctors will remove the T cells from the donation and give me what is called a T cell depleted graft (transplant). They will then introduce my brother's T cells into my system according to the dosage and formula of their choosing. The transplant doctors will also be trying to determine the proper dosage and T cell formula in this study.
It has been difficult just to get ready to into the hospital. A community of people, many complete or virtual strangers to me, has stepped up to get me to the point where I am able to say yes to the risks of transplant. There was a point I wasn't sure this would be possible. I'm humbled to report I have received more than $20,000 in donations to get me through to this point and I promise every donor I will do my best to survive and see that their money is well used. So far, donation money helped to pay more than $10,000 in dental expenses to make sure there is no potential danger to me during transplant recovery from bacteria in my mouth. The money has also gone to help rent a place in Stanford where I am required to live for three months following my month in the hospital. Serendipitously, a duplex next to my parents house came up for rent and we were able to get the lease on that place for when I return.
As most of you I hope know, donations are not to help me with my medical expenses. I have insurance that covers the procedure. It's the unfunded medical requirements that I need help with. I am now officially off work with a disability. COBRA insurance payments, rent, utilities, living expenses, paying for the four months down in Stanford, and help with care taker expenses are all examples of how donation money is and will be used. Thank you all for your help with things. I really mean it when I say I cannot live without you. As soon as I figure out how, I will update the website with a spreadsheet that will account for the donations to date and the expenses. Transparency is important to me in this process. Please don't hesitate to contact me if you have any questions about how to donate or how the money is being used.
The stem cell transplant team at Stanford tells me they do not restrict visitors as long as people are showing good sense. This means not too many visitors, frequent hand washings, no children under age 12 and if you are even a little bit sick stay away. I can also take phone calls and use my computer so feel free to stay in touch by visiting, phoning or social media. I will do my best to keep this website updated. My phone is 215-3130-2571.
I intend to send each and every donor a personal thank you. This will get done as fast as I am able. Many of those thank you notes should go out this week. If you don't receive a note right away please be sure I will do my best to let you know your help is appreciated as soon as I can. This transplant to save my life is, again, a community effort. I am feeling very blessed to know I am a part of so many great communities that are stepping up to help. I love each and every one of you and am very grateful for your help and support. Thank you.
Transplant hospitalization set
Stanford hospital notified me April 11, 2013 it will admit me into the hospital for transplant on May 15. I will be given chemo treatments from May 19 to May 28. The transplant takes place May 29. I will be in hospital for at least 2-3 weeks following the transplant. After that, if all goes well, I will be moving with a care taker someplace near the hospital.
If anyone has any contacts in Stanford who may be able to help me find a clean two bedroom place to rent for those three months the help is greatly appreciated.
As visitors to this site know I am required to have a full-time caretaker for the three months I am required to live near Stanford hospital.
Caretaking will require cooking, cleaning and driving to daily doctor's appointments at the hospital as well as monitoring and watching for sudden negative changes in my health while away from the hospital.
Because people have lives, and because I expect this chore will not be easy, it seems this caretaking will likely work best if we can rotate people into the care-giving position every couple of weeks.
So far I believe I have the first six weeks pretty much covered.
If correct, and all goes well, this means I will need caretakers to cover me from somewhere about the end of July or beginning of August to somewhere to the middle to end of September.
If you would like to be help with the caretaking please contact me either by email at firstname.lastname@example.org or by phone at 215-313-2571.
We will soon post a calendar for people to determine our need and see where they may be able to fit in if needed.
Thank you for your love, generosity and support.
You are inspiring.
Information on Philadelphia fund raiser
The article below was written and published by friends of mine for friends of mine who are staging a benefit for me Feb. 28.
I am grateful, humbled and honored by this help.
The doctor has given me permission to attend this benefit so I will be there.
It will be great to see you all.
These are true words not hyperbole.
The only treatment I am offered is an Allogenic Blood or Marrow Transplantation at the Stanford Cancer Center.
The procedure begins with a week to two weeks of myeloablative chemotherapy - a high dose chemotherapy with the goal of destroying my ability to make blood cells, wiping out my immune system, and create bone marrow where healthy cells can grow.
After the chemotherapy stem cells will be harvested from a donor and infused into me. I will need to be closely monitored 24 hours a day/ seven days a week for the next 100 days.
Recovery is expected to take six to twelve months or more.
I am going to need physical, spiritual, financial, medical and legal help to make it through this medical process. Many people have already offered to help. Thank you. Many more will have to help if I am going to pull out of this process alive.
I love you all.
I Have a Donor
I received good news Jan. 22, 2013.
My brother Chris is a donor match.
This means I will be going into the hospital sooner rather than later if I elect to proceed with the bone and marrow transplant.
It also means less chance of an organ rejection.
While it is likely I will decide to go ahead with a transplant I am still gathering information and attending to some details and chores that will help decide if transplant is the best option for me.
I will be making this call very soon, obviously, and I will let you know on this website as soon as I make this decision.
Thank you to all who have asked to be tested as a possible donor match.
This is a generous and kind thing to offer and is much appreciated. Your willingness to help means a great deal to me.
For those of you who would like to be tested to help others who are in need of a bone and marrow transplant, information on how to get tested for a possible donor match is found here: marrow.org
The bone marrow transplant procedure requires that I live near the Stanford medical campus for three months after a month's stay in the hospital.
During this three-month stay in Stanford I must have someone living with me as a care giver 24 hours a day, seven days a week. The caregiver does not have to be a professional as the job is to drive me to daily hospital appointments and to monitor my recovery in case there is a sudden health crisis. The caregiver will also be asked to cook and clean for me during this time as doctors will not allow me to do those chores with the compromised immune system I will be left with after the transplant.
Doctors will not allow the transplant until the caregiver system is in place. Paying for full time care from a professional service for three months looks to be too expensive for me. There is no insurance benefit to cover this cost and the hospital has no program to cover this necessity. I am hoping to find a volunteer team of between one and six people who are willing to accept responsibility for caring for me during the three the months care giver help is needed. Once we have the people in place and I know when I go into the hospital we can work out the care giving schedule. If you think you may be able to help call me at 215-313-2571, contact me by e-mail at email@example.com or message me on Facebook @caffmcjimmrey.
Thank you all.
I can't live without you.