Well it has been a day or two since I have updated my blog. See what happens when I get my freedom restored. This will hopefully get everone up to speed as to what has happended since the last report. We went over to UCLA and visited with my Dr. we talked about some different treatment methods that are available. One was to take some whites cells from my first donor and transplant them. This sounded ok until the side effects were made known to me like lots of graft vs. host diesease, rashes, infections and lots of throwing up (YUCK). The other idea that they had was to get me on to a clinical trial drug that is actually a vaccine. They will not put me on that drug as I am too much of a risk for the company right now, a death on the record would kill it as far as FDA approval is concerned and that would mean the loss of a lot money on their part, even though it might mean a cure for my part. Follow the money. I then suggested trying another transplant. The doc though that I had lost my mind as he had no experience with doing a double transplant. I talked to him a couple of weeks later and he informed my that the second transplant would be the best option for me, unfortunatly UCLA does not do this type of procedure and he is going to send me to the Seattle Cancer Care Associates for the transplant. Apparently they were the ones who pioneered transplants back in the 60's. They are the number one place to go in the WORLD for transplants, guess I should have started there in the first place. I talked to them this morning and it looks as though most of the treatment is going to be on an outpatient basis which I love. They don't really like to admit people into the hospital as it creates a hazard to recieve infection. Those who remember the first transplant will remember that it was the hospital infections that put me into the 3 week coma. I will be going to Seattle on the 28th of November to start the process of the second transplant. I feel very lucky to have two perfect matches and appreciate all that they have had to go through just to keep one of the brothers alive!!!
The Seattle portion will take about 4 months to complete, they have to do about a 100 days of follow up before I can return to Las Vegas... does anyone know of a place that I could stay at other than under the bridge of Interstate 5? It would really help even if it was broken up into a 5 or 6 different places (I don't want to wear out my welcome).
I am currently in the Mountain View Hospital until Saturday. I had to do another round of Chemo to, as my brother-in-law Brian Griffeth put it "make for damn sure" the leukemia stays in remission. Yesterday, I had another bone marrow biopsy and as Brian's wisdom once again pulled through with the advice he gave me "When the Dr. says you will feel a little bit of pressure, that really means this will hurt like hell". I still have not heard the results from this test yet but shoud soon.
Well I think this will bring you up to date as to what is happening in my life. Please continue to commment onthe blog, it has been nice to hear from all of you. Thank you for your prayers and concern.
Take care
Casey
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14 comments:
Wow, thanks for the update! We keep praying for you and your family, Casey, and hope that things go well with the next steps. It's too bad you can't be in Florida for the transplant--we have lots of room for you here! We wouldn't even make you sleep under the highway.
I linked your blog to mine (http://kimberlycharles.blogspot.com). I hope you don't mind. :-)
Wow. My brother's wisdom is so...um...how do I say this? Spot on, yet profane? Yup. That'd do it. We keep him around for entertainment. Nobody makes you laugh like good ol' BJ. Keep him handy these next few months. Laughter helps - physiologically and physcologically. Thanks for the update. Brian gave me a few details on the phone the other day, but this is better. Thank you! Hello to Lani and the kids. Oh, and I've got a bandana here with your name on it. Check my blog for my email, and send your address to me. You're information will be rewarded. :)
Go team Nish! Ra-ra-ra! (I should have been a cheerleader)
Thanks for the update. I check your blog often and it's good to know what's going on. I'm excited for you to go to Seattle. We wish you all the best. We keep praying for you and your family. We love you guys!
Thanks for the update. I check your blog often and it's good to know what's going on. I'm excited for you to go to Seattle. We wish you all the best. We keep praying for you and your family. We love you guys!
Finally, something to read. Good update, it is always best to hear it straight from the guy himself.
Still waiting to hear back from my friend in Seattle. Someone has gotta have a connection around there. Maybe Edward Cullen.....(for Lani's sake).
C-you in a few days. YIPEE!
Thanks for the update Casey. I have been wondering how you were doing since coming home. We don't have anyone in Seattle to stay with but we are in Portland and would love to try and come and visit you some time up there. I think it is about four hours from there. You are welcome to stay here if you can be that far away from the hospital!
So glad to read an update, we'll keep you in our prayer's, not just for the transplant, but that you won't end up under Highway 5 also!! If we find that we know someone out there we'll let you know.
It's good to hear an update from you Casey---I can't believe you're going to Seattle, but I'm sure outpatient treatment will be much more bearable...we definitely don't want you getting any infections like last time! You're always in our thoughts--hang in there!
Hey, I didn't know you had a blog but I am so glad you do so that I can see how things are going with you family. We live in Coeur d'alene, ID but it is 4 hours from Seattle. You are more then welcome to stay with us, that is a long drive for you though. Let us now what day you'll be there because we were planning a trip to Seattle and we would love to see you. Check out our blog as well at jilleneandtyson.blogspot.com. We hope all is well and let us know.
Casey and Lani,
Too bad about the drugs. It is a blessing that you have two donors. We are keeping you in our prayers. Is Lani going to go up there also? We hope the best for you. I have an uncle in Port Angeles, which is maybe an hour or two away. Ken has cousins in Seattle if you want us to contact them. Let us know. Our thoughts are with you.
Hi,
I've never met you guys, but I am Brian Folsom's wife, my name is Maren. I came across your blog and I've been asking my family about any contacts in Seattle. My sister came across this information:
American Cancer Society - Everett Office
Address
American Cancer Society - Everett Office
728 134th Street Southwest Suite 101
Everett, WA 98204
Phone Number
(602)224-7479
Program Details
Program Name
Housing - Patient
Description
Guestroom - Is a program of the American Cancer Society which helps provide lodging for cancer patients and their families. This voluntary service is made possible by an agreement between the local American Cancer Society office and participating hotels and is based on availability. This program is for people who come to Wichita county from outside of the area. Please call local office for further information, restrictions and to make reservations and arrangements.
Comments
Hotel accommodations can be provided to cancer patients and to one accompanying caregiver while patients are receiving treatment, and who must travel more than 50 miles or 90 minutes. Expenses incurred while at the hotel such as food, telephone calls, and/or movies are the responsibility of the patient.
Program Dates Program Times
Scheduled as needed Scheduled as needed
Program Fees
Free
Eligibility
Must be a patient currently undergoing treatment. All hotel accommodations are subject to availability and to restrictions imposed by the participating hotel. Requests for lodging are provided on a first-come, first-serve basis, during regular business hours, Monday through Friday. Weekend stays are available if appointments are on Friday night and or Monday morning, according to hotel availability, and distance to travel is excessive and proves to be a hardship on the patient. One week notice is needed for requests.
Additional Information
Your American Cancer Society compiled this information as a public service. Our goal is to provide a comprehensive list. Inclusion should not be viewed as an endorsement of these organizations and programs by your American Cancer Society.
Before attending a meeting, please verify the meeting time and date. Should you experience difficulties with any of these resources, please call your local ACS office and tell us about it.
Your American Cancer Society hopes that the information provided is helpful to you and those you share it with.
Please let us know If you would like to Add/Update a listing.
If you can't find the information you're looking for, contact ACS by email with your question. Your may also call your local ACS office.
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You may have already known about it, hopefully it will help you out! We'll keep looking for resources in Seattle. Stay strong and positive!
Love,
Brian and Maren Folsom fam
Life is so crazy. I think about you guys all the time. You are both such a great example of courage.
Lots of love,
Meagan
Casey, I am glad to see that your spirits are so high. We hear so much about the Seattle centre in different groups. I know you will do well there.
I am at cross road to treatment as well. I could very well be headed for transplant as well. I'll have to email you for some tips if I go that direction. I had my 3rd BMB today. It was a little better than the first 2, but I'm sure you'll agree that you never get used to them. What are you on 10 or 12 for your BMB's? Anyhow best of luck.
Cam
I just wanted to let you guys know we are praying for you and think of you often. Thanks for the update.
Jennie Zabriskie
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