About 2 weeks ago John and I met with one of the Dr.'s at LDS Hospital - Dr. Asche. I had not met her before and really like her. We were supposed to be going over stuff for the stem cell collection. Which we did. But, she had something else to present to us!
So, the plan had been for John to have his first stem cell transplant using his own stem cells on Feb. 22. Then when the cancer came back (a few months to a few years later) he would have the donor transplant. Well after some research from the Dr.'s they were not sure this was the best plan. They starting researching a "tandem transplant". Basically you do the donor transplant right after his own stem cell "rescue"! The Dr.'s really feel like it is the best hope for John. There are many many risks involved, but also could have a potential cure.
We both thought about it for a while, we prayed and fasted and thought hard about it. It is always John's choice, and we wanted to do what is right. So, in the end, we agreed with the Dr.'s!!! This means a lot of changes:
- John will have to quit his job.
- We will no longer have his income.
- We will no longer have benefits, including health insurance offered through his company!
- We will have to seriously look at our financial situation and really really cut back. We do have another source of income each month and we think we can live off it, but do have to make many changes. But we won't have health insurance! working on figuring that one out?
- John will be in the hospital for 3-4 weeks for his first rescue transplant. Then home for 30-60 days. Then back to hospital for 1-2 months for donor transplant. Then home for 1-2 YEARS for recovery!!!! During that time he will be in and out of the hospital fighting Graft vs Host disease as his new stem cells "try" to adjust to John's body. They may attack his organs, skin, heart, liver . . anything they want. That is why this is so risky. Some things the Dr.'s can help with, other things they can't.
We really do not know how we are going to do this. But we really feel like it is what John is supposed to do. This is totally turning our lives upside down even more!! Did not know that was possible. We knew he would have to have this transplant, we just thought it would be at least a year away.
Oh Noelle. How I WISH I lived closer to be of more help to you. I'm trying to process everything that you just posted and it's a hard one to swallow. I'm afraid for you guys but I also have so much faith in your decision, too. Heavenly Father is on your side, and He will bless you in ways that you will never imagine. Somehow everything will work out. I just know it.
ReplyDeleteHi Noelle, Kathy Ottesen here, John's mom's cousin. Just wanted you to know that you are all in our thoughts and prayers. Such a hard time for you all. You are in a particularly difficult position being the caretaker, mother, etc. I hope you get the support you need. It can be so very hard. Just wanted you to know that there is a group of family members that are rooting for you all with love.
ReplyDeleteKathy and the rest of the Ottesen family
Hi Noelle - I have never met you but I know John from choir at BYUH and you and I apparently have a lot of friends in common! I was wondering if anyone has set up a donation account for you? I would love to donate and help any way I can. Also, you should be able to get Cobra from John's work. By law your company has to offer you cobra for 18 months (thanks to Obama) whether you are let go or if you quit. It would be more expensive monthly, but would definitely save you tons of money too. You probably already know this, and maybe they have found some clause to not provide this for you. But I do believe it's a law... here is a link I found: http://www.ehow.com/info_7948665_do-employers-offer-cobra.html
ReplyDeletePlease let me know if there is anything I can do for you! - Becky Monson (beck252@yahoo.com)
And don't forget to apply for Medicare, disability, anything else the government can provide.
ReplyDelete