Monday, September 24, 2012

9/24/12 Update

Once again, so much has happened since the last post. John had his surgery and if you have seen the incision, this was  much more intense than we realized. An MRI done just before John was put under revealed that the tumor had significantly grown since the MRI taken just two weeks prior. The neuro surgeon felt it was imperative to get as much of the tumor out as he could. After John had healed from the surgery he went through five rounds of radiation in hopes to get the rest of the tumor. He was in extreme pain and never regained feeling in half of his face. The lab results from the tumor biopsy confirmed it was cancer and John's Myeloma had returned.
John then began a stronger chemo treatment and soon had the usual side effects of nueropathy and some hair loss. He has struggled this time with a lot of nausea and fatigue. We were advised from his oncologist to meet with the Seattle team of doctors from Cancer Care Alliance to go over further treatment options. It was there that we learned that John's cancer cells had mutated and taken on a very aggressive form. This explains why the tumor grew so fast. The doctor said she would be very surprised if the cancer had not already reached the brain fluid and if this was the case, John only had about six months to live. As you can imagine this was devastating news to us. John was scheduled for a spinal lumbar which thankfully was good news. This did mean however that he was faced with a very emotional decision. John was told he had reached the point where he needed to make a decision to choose quality of life or fight for quantity. He could continue to fight the cancer with chemo options and get 1-2 years at best but would feel good and be able to make memories with his family. His only other option if he wanted to fight for more time was to undergo a double transplant. The odds are not very good and the treatment is very risky. He would be put through severe rounds of chemo and another transplant using his own stem cells frozen from the first treatment. After about 30 days to heal he would go through a second transplant using donor bone marrow. In his case he has two brothers whom are a perfect match and very willing to help save John's life. He would have about a 45% chance of catching graph vs host disease and could find himself fighting for his life from it. Many patients become severely ill and need to be hospitalized but others have mild cases. If John does survive the transplants, only 25% of patients go on to have "long term" life. There are several studies out there but many do not live past the first year. Regardless of these odds, we all know John is a fighter! He told his family that he could not look his little girls in the eye without knowing he had tried everything possible to fight for more time with them. John lost his own father at the age of 5 and knows too well the pain of growing up without him. Our youngest daughter is five now so this hits so close to home. Many can say what they would choose but spending the last amount of time you may have with your kids making memories or fighting for life in a hospital bed is not to be taken lightly. We all support John's decision and will stand by his side every step of the way.
We once again find ourselves waiting for financial authorization but Seattle is expecting us to check in for treatment on October 10th. This transplant treatment will take 6-8 months. We made a very difficult decision to leave our children at home for now. We want their lives to remain as normal as possible through this. Staying in their own school with family and friends close by offers a support system they need right now. We are blessed to have an amazing church family who has surrounded our family with caring support through this difficult journey as well. My mother has offered to move into our home to care for the girls and we simply could not do this without her help. I can not go as John's caregiver and their mom at the same time. I will travel back and forth from Seattle when John's family can take shifts and then I can be with our girls. As long as John's numbers are ok we will also travel as often as possible with the girls so they can see their daddy. Many emails have already came in asking how people can help, we do not need any donations at this time but friends have offered to send gas cards or donate some air miles to assist with the travel expenses. This has truly been appreciated and will be so helpful especially as the pass becomes unsafe this winter. Above all please continue to keep our family in your prayers and a special prayer of protection for our girls while we are apart. I will try to keep this site updated but if you are on Facebook, you can follow John's story at Save John Knighten

2 comments:

  1. Hi I don't know how I found this blog but I really feel for you and your family. I have a friend with multiple myeloma, although not at the same stage as John. I just wanted to share (and I don't know how or why this has worked for her) that my friend has started getting regular chiropractic adjustments and her protein count is actually returning to normal and her X-ray shows her bones in her spine in one area that was attacked by myeloma are healing. Her doctor can't believe it, he's never seen anything like it. He doesn't think it's the chiropractic but she has full faith and says its made an amazing difference. Maybe this could also help John? It's worth a shot? She says its probably not going to cure her but it has definitely slowed the progression. All the best, my thoughts and prayers are with you and your family x

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  2. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?

    Thanks,

    Cameron

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