WE STILL NEED YOUR HELP NOW!!
Cristy's medical expenses for after care continue to mount and we must repay the loan that made the transplant possible.
Cristy's appointment in Turkey is almost here and even though we still have a desperate need for more funding, we are proceeding as if everything will work out and she will be able to have the transplant.
- On Friday, February 18, she had an appointment with Dr. Gulbas, who, fortunately, was in Hawaii for a conference. He met with Cristy and her local doctor to discuss her aftercare when she returns to Hawaii. Dr. Gulbas was very encouraging about the promise of treatment.
- Because of her pain and the length of a flight from Honolulu to Istanbul, Cristy and Liz left on Sunday, February 20th with a stopover London, where she will have time to rest before the next leg of that journey.
- The first payment of $22,000 has been wired to Anadolu Hospital to cover all pre-transplant procedures. We are operating on faith that the approximately $50,000-$55,000 needed to cover the transplant and all associated aftercare costs will come from generous donor(s) or through a loan.
- If we don't get our miracle, she will return home from London to begin chemotherapy to address the increasing pain she suffers as these diseases continue to take their toll on her. The degree to which the chemotherapy will slow the progression of the diseases is uncertain, but she will continue that treatment until the functionality of her organs decrease to the point that she goes into renal failure and dies.
Pray for a miracle, but search for that miracle worker. We need him/her desperately.
Please go to the "Donate Now" page and make your contribution.
We, and Cristy, appreciate your support.
December, 2010: The decision has been made!
Cristy has an appointment in late February in Istanbul, Turkey, at Anadolu Hospital, an affiliate of Johns Hopkins University. While there, she will be under the care of Dr. Zafer Gulbas, a professor of internal medicine and hematology. Dr. Gulbas trained at the M.D. Anderson Cancer Research Center (Orlando, FL), the Fred Hutchinson Cancer Research Center (Seattle, WA), as well as various locations in Europe, Canada, and Israel. (Please follow the links for more information on the hospital and the doctor.)
Dr. Gulbas has defined a treatment protocol for Cristy that includes harvesting stem cells from her bone marrow and transplantation. He anticipates that Cristy will need to be in Istanbul for approximately 3-4 months either at their new bone marrow transplant center or in an outpatient situation for follow-up and monitoring. At this time, Cristy's organ functions are at appropriate levels for Dr. Gulbas to do the transplant, but it may not stay this way if she has to delay any longer and miss this window of opportunity.
Keep in mind that such treatments are not available to Cristy in this country. Her insurance will not cover it (it's not approved for autoimmune diseases, even though it is the best possible treatment), and doctors here will not perform the transplant without insurance--even for cold cash. The cost of this treatment in Istanbul will be approximately $80,000.00 for the medical procedures, which will not include room, board, and transportation for the times when she is not hospitalized. Her friend and partner, Liz, will accompany her to Turkey and stay with her as she moves through this very difficult, life-threatening process. Of course, with the risk of the transplant, complications may arise which would require a change in plans. Those of us who care deeply about Cristy do not want her to go through this alone. We are hoping to find others who can be with her at times during this ordeal.
The money raised so far by the One of Our Own Fund has paid for the medical bills that began to accumulate after her trip to the Mayo Clinic in 2007. But that hardly covers the extent of the ongoing medical bills, which have continued to mount in the form of:
- co-pays for each doctor visit,
- co-pays for medical testing such as MRI's, CAT scans, x-rays, pulmonary testing, echocardiograms, and monthly blood work,
- co-pays for each chemotherapy treatment (which may be as much as $2500.00) and
- monthly prescription costs.
What does this mean for Cristy? It means an opportunity to extend her life and keep her with us as long as possible. Those of you who know Cristy understand how desperate we all are to keep her around. We need your help. Every little bit will help. If you can contribute something--anything--we would appreciate you joining us to save her life.
Please go to the "Donate Now" page and make your contribution and join our Power of Ten Email campaign.
We, and Cristy, appreciate your support.
Cristy and Liz just got back from a trip to Bangkok to investigate the possibility of a stem-cell/bone marrow transplant there, but they didn't get a lot of good news about the potential for doing it there. It seems the doctor wants $90,000 for the procedure. Now we're hoping that Istanbul, Turkey, will be a better option. The doctor there is US trained and the hospital is affiliated with Johns Hopkins.
Cristy still doesn't “look” sick – in fact, she often hears, “You look great,” when people see her. But internally, her body continues to implode as the autoimmune diseases slowly but progressively continue their destruction of her internal systems. Since the last update, Cristy's Cytoxan infusions have continued on a monthly basis and her docs put her on a second chemotherapy regimen with Rituxan. In September she has been spending every Friday at the Kapiolani Women's Cancer Center getting chemo treatments. The accumulation of chemicals in her body is starting to take its toll as she has more difficulty each week bouncing back from the treatments.
Vicodin as a pain killer is no longer sufficient and her physiologist has now added a daily dosage of morphine. She's also awaiting her certification card as a user of medical marijuana to help with the pain – a strange certification to possess since it's still illegal to sell or buy marijuana in the state of Hawaii!
On the transplant front, Cristy now has two appointments in mid-November with doctors in Bangkok and has just received word of a doctor in Turkey who is very interested in working with her toward a transplant. Both facilities are certified by international organizations and the doctors involved have been trained in respected medical facilities in the US. In addition, the facility in Istanbul is closely associated with Johns Hopkins in Baltimore. Both possibilities have brought an increase in hope for a situation that can be so draining and difficult.
Through all of this, Cristy continues to be buoyed by the support and efforts of her friends and colleagues who are working so hard planning fundraisers to make a life-saving procedure possible.
July 16, 2010
The good news:
(1) Received tenure and promotion to Associate Professor at University of Hawaii
(2) The cytoxan and combination of rituxan (both chemotherapy) seem to be slowing down the progression of the diseases
(3) Pulmonary function test show that vasculitis has not yet gotten into the lungs; AS is making the bone and muscle around the lungs very sore
(4) Waiting on results of echocardiogram, but it seems that all is working well in the heart
(5) Working on plans to visit Bangkok in the fall to investigate stem cell transplant (need $$$$$$$)
(6) Cucumber and tomato plants are growing; this is my new hobby.
Not so good news:
(1) Cytoxan will continue for at least 4 more months; rituxan infusions will start again in September. In September I will have an infusion once a week for the entire month; each lasting three to 9 hours). While this is slowing the diseases down, it will not stop them, and I cannot do these infusions for extended periods of time. The next Cytoxan infusion is July 30th.
(2) Esophageal problems seem to be getting worse. My prescription plan with the university does not cover the medication that works best for me and the cost of the drug I need is over $400.00 a month
(3) Very, very tired these days, sometimes sleeping 16-18 hours a day
(4) On many medications for pain, including flexeril, vicodin, celebrex, and tylenol 3. Will be seeing a pain specialist on 19th to investigate other ways to relieve the daily pain
(5) Macrodegeneration, among other things, is causing my sight to worsen and frequent changes of prescriptions for glasses.
Many have suggested I become a participant in some of the research studies and clinical trials around the US. We have looked into scores of these studies and trials over the years and continue to do so. I have also been pursuing a bone marrow/stem cell transplant for over a year now. Unfortunately I don't qualify for the research studies being conducted around the United States for Scleroderma which involve bone marrow/stem cell transplants for a few different reasons:
(1) I had cancer in 2005, and (2) I do not have the level of sclerodactyly (skin tightening) required. I do have everything else. But FDA rules exclude me. In addition, the studies currently under way have a very high mortality rate (over 60%) because the patients who qualify are so far in decline they cannot handle the amounts of chemo necessary for the transplant, which seems counter intuitive to me.
The bottom line is: If I can find an oncologist to perform the protocol being used for the transplant and pay them cash for the procedure, I can stop the diseases from progressing any further.
A transplant WILL NOT cure the diseases or fix the effects that have occurred already in my body, but I do stand a very high chance of stopping it from getting worse for an extended period of time. Currently, I AM strong enough to get through the chemo and transplant. Finding a doctor who can and will do it for cash is the task at hand. And so I continue to research and reach out to anyone who is a potential lead. I guess it is one of the reasons I will have to leave the U.S. to get any kind of treatment that will affect the diseases that are destroying my body.
May, 2010 Update:
Bad news on the bone marrow/stem cell transplant front: we are sad to say that in late April, Cristy learned that her request for the transplant had been denied. Her health insurance will not cover it because such transplants for auto-immune diseases are still in clinical trials in the US. Her doctor has refused to do it without insurance approval, even for cold cash. He suggested that she go to China or contact a doctor in Switzerland—this is the same doctor who sounded so hopeful during her initial consult! It seems the transplant committee actually made the decision well before her appointment with the doctor, who made her wait several days before she learned of the denial, and then, to top it off, he made her wait an hour past her appointment time before meeting with her to share the news. He must think she has all the time in the world. At this point, then, she is back to square one; if anyone out there knows of an oncologist who would do this for cash, please, please, please send the information along to us and we’ll take whatever steps we need to give Cristy a fighting chance.
At this time, Cristy has appointments every week and has blood work done every three weeks; she has completed two infusions of cytoxan (see below). Even though this type of chemotherapy is often used to treat lymphoma, it has been found to help those suffering from certain autoimmune diseases. She will have these infusions every four weeks for 12 months.
Unfortunately, in order to feel better from the autoimmune stuff, she has to suffer some pretty serious side effects, which last about three weeks, giving her only one week of feeling reasonably well before going in for another infusion. Among the side effects are nausea, feeling tired, and developing serious mouth sores. She will continue to have these cytoxin infusions, and we can only pray they will make a difference and give her more time.
In the meantime, she tells us she is going to try and grow some tomatoes, cucumbers, and strawberries with those new topsy-turvy planters. Seems like a needed thing for city living; if they work! Even with all of the pain and discomfort Cristy experiences because of her disorders and the chemotherapy, she can still smile and say, “Hey, I live in Paradise.”