Family and Friends -
I can't believe I forgot to post an update since Ray's last chemo/bone marrow biopsy in early December! I truly thought I had updated it before the holidays. My apologies!! I guess with work and the holidays I must have updated it in my dreams! Alot to catch up....here goes...
* Bone Marrow Biopsy Results - The Dr. told us a week ago that Ray has experienced 'unbelievable and remarkable' positive results from the 5 months of chemo to date! GREAT NEWS! Ray's 2nd biopsy on Dec 5 (when I was out of town on business) did reveal that his blasts have reduced from 5% (initial biopsy) to 1%!! PTL! This is GREAT news. The chemo is working 'remarkably well' and has not only increased all his blood counts to the normal range (low normal, but still normal), but decreased these blasts, or leukemia cells. We were originally told in Dec that there was no change in the blasts...not worse, but not better..no change. Ray was a bit discouraged with this, but the Dr. didn't seem alarmed and was just happy they hadn't increased. However, when we got some other conflicting information a few weeks ago, Ray requested copies of all his bone marrow biopsy reports and we saw for ourselves that they had, in fact, decreased significantly to 1%. Guess someone read the report wrong. ?? We met with the bone marrow transplant doctor last week and asked him to verify this for us, which he did, so someone definitely gave us incorrect info originally. Either way, we're very happy with these results. In addition, we just learned last week also that the chromosome damage the first biopsy showed is no longer evident in the second biopsy...so his chromosome damage (missing chromosomes 7 and 20) seems to have resolved or repaired itself with the chemo. The doctor was quite amazed at this specifically....a huge factor in Ray's success for a transplant cure!! This is huge!!
* Bone Marrow Donor and Transplant Update - As you recall, we have been told repeatedly that the ONLY permanent and complete CURE for this disease is the bone marrow transplant The chemo is not a permanent cure. After receiving some 'outdated' information at Ray's appointment last week that there was no suitable donor, we met with the transplant doctor last week as a followup and verified that to the contrary, Ray does, in fact, have a very suitable donor!! At last blog, I had mentioned the guy from Germany that was a 95% match. Turns out the 95% he matches is not 'good enough' so they kept searching. Ray got a call a month or 6 weeks ago that there was a 56 year old woman in Canada that was also a 95% match, but her missing 5% was a much less significant marker and they were very confident in her as an unrelated donor. (Seems the oncologist didn't get the memo!) The bone marrow transplant doctor that we met with last week (and who we really like and have total confidence in) confirmed this Canadian woman is a solid match. Turns out that out of 10 'markers' for your bone marrow, Ray has 2 markers that are quite rare, making the 100% perfect match we were hoping for very improbable of existing without it being a relative. The dr. put it in perspective for us: out of the 15 million people registered on the world wide donor registry, only this ONE single Canadian woman is even a 95% 'close enough' match. This is amazing to think about. 1 in 15 million!! What a miracle!! We are so blessed! So, the dr went on to say that basically, the transplant is 'now or never'. If he's ever going to do it, this is the optimal time...so we are scheduled for the transplant to take place the first week in April...exact date to be determined as they have to confirm with the donor that this week works for her as well. We were told last week that Ray's chances for the transplant to be a permanent cure are appx 65%. I will attempt to explain it as the dr explained to us: There are 3 critical factors that greatly impact Ray's success with the transplant being a permanent cure. 1) Ray's age, 2) the donor's quality of a match, and 3) the % of leukemia blasts, blood counts, and chromosome damage at time of transplant. So, we know that Ray will not get any younger than he is now (we're talking physical age, not mental here! lol ), the donor is a very good 95% match and with the registry adding only 100k new donors/year, the odds of him finding a better match are not too great when only 1 out of 15 Million has matched this well so far, and his blasts are at 1%, all his blood counts are in low normal range, and his chromosome damage is gone...all as a result of the great reaction to the chemo. Why do the transplant then if he's in remission now and all his counts are so good, you may be asking. (We asked the same Q!) While the drs have said Ray is in basic 'remission' right now and back to normal health, they know for a fact that the chemo is NOT a permanent cure and at some point in time, his body will stop responding to the chemo and his numbers will start regressing and his blasts will start increasing again, moving to that acute leukemia stage. No one can predict when that will happen...could be next month, could be 5 years from now......its different for everyone. So if we were to wait and let him enjoy this remission time of good health, we run the risk that his health will be much poorer at time of transplant and of course, he will be older. The other thing in my mind is that 'what if something happened to the donor' and she got ill and could no longer be a viable donor....she is the ONLY one right now...so after much discussion and prayer, Ray feels strongly that he should 'go for it' now. The transplant remains the only chance for a complete and permanent CURE - which is of course what we are praying for!! Ray wanted to finish up a few key events at work in March, as he will be out of work 3-4 months most likely, so he wanted to wait until April. Turns out he has to do some more testing and another bone marrow biopsy as well as get all the insurance paper work in line, so it will take another 6-8 weeks regardless before they will be ready. Please pray for him during the week of Feb 6th, as he will be taking his 6th chemo treatment (Mon - Fri) as well as a battery of additional tests in prep for the transplant. He will be in the hospital all day on Friday, Feb 10, having tests done, including a third bone marrow biopsy! This time he has requested 'conscious sedation', so he doesn't have to experience the extreme pain from the second one in December. I am thankful I will be there with him this time; I do have to travel again on business Tues - Thurs, but will be with him all day Friday for all his tests. So, April it is for the transplant...probably before Easter!! I will update the blog as soon as we get the final date.
* Transplant Process - Again, what will happen with this transplant is that Ray will be in the hospital downtown Dallas at Baylor Transplant Center for appx 3 weeks. Week one is perhaps the roughest on him physically -he will be 'blasted' with very high doses of chemo, designed to kill ALL his bone marrow...the good and the bad...so he will basically have NO immune system, no red or white blood cells, no platelets whatsoever. He will suffer nausea and he will lose his hair at this time. (He's already got his CUBS baseball cap ready to go!) Suffice it to say, he will be pretty sick at this time and he will need all your prayers!! Then he will receive the new bone marrow/stem cells and his new immune system will start the process of building anew in his body. He will take on whatever blood type his new donor has...he will have her immune system. Pretty amazing when you think about it! He will be in the hospital for 2-3 weeks during this time when his immune system is trying to start up and 'take'; he will be taking anti-rejection meds at this time as well and the doctors will be helping his body resist the dreaded 'host vs graft' complication where his new immune system actually can start attacking his own organs. He will also be very susceptible to infection during this time while his white blood cells that fight infection start rebuilding, so another very critical time for Ray. After that first 3-4 weeks, he will get to come home and recover at home until he is strong enough to return to work, hopefully in 3-4 months from the start of the process. During his first month home from the hospital, Ray will need to go back to the hospital 3x/week for tests and monitoring. Then it will taper down to 2x/week, and then 1/week. It is such a major blessing that I work from home and will be able to be here with him full time during his recovery.
So, that's basically it....I promise to update as soon as we get the official date in April. Ray is ready to get this started and on his way to his cure and recovery....but it is definitely very scary and he asks for your continued prayer as he goes through the rest of this journey. God has blessed him so far with the 'remarkable' results from the chemo to get him in such a great state of health and reduced blasts in prep for the transplant. We are trusting in God to keep Ray safe from infection and rejection and 'host vs graft' complications. He is optimistic and anxious to move on with his life, be cured for good and able to look forward to his future again with the kids and grandkids to come!! (No, no announcement here...just looking forward to that stage of his life when the time comes!)
So, while we received some conflicting info originally, it is all sorted out now and we are so happy that one wonderful woman in Canada decided to sign up for the donor registry and now she will have the awesome opportunity to be used by God to help save Ray's life. It doesn't get much better than that!!
PS.....2 quick items....First, wanted to let you all know that our 18 yr old son, Jordan, signed up for and was sworn into the Army last month. He has been talking about this and considering it for a year now and decided now was the right time. He will head out to boot camp (in MO) Aug 14th, after he graduates in June. He has secured a job as an MP - Military Police - which is what he really wants to do and those jobs are apparently hard to come by, so he is very happy. Mom and Dad have very mixed feelings..very proud of him in that he has such a strong desire to serve our country, but a bit worried about what the future will bring with the state of the world today and in the next 8 yrs. (He signed up for 5 yrs active and 3 yrs inactive service..meaning he serves 5 yrs but for the 3 yrs afterwards, the Army reserves the right to call him back into military action due to a state of war or other emergency.) Apparently the MP job requires a longer commitment. We are trying not to worry and just put his life in God's hands, where it has always been, and pray he keeps Jordan safe during this time.
Secondly, and I know this is so trivial in light of what Ray's going through, but I wanted to take this opportunity to share another blessing and thank you for your prayers. I had told you all that I had 'lost' my wedding ring back in Oct and didn't have much hope of finding it after we moved in Nov. Well, I had never really given up hope and prayed that if it was not truly 'lost', that I would find it before the end of the year. And so, on the night before Christmas Eve, I was wrapping presents with my dear friend of 21 years, Carie Parrent, at our new house...when I opened a drawer in my nightstand looking for another pair of scissors or tape, and there was my wedding ring! In virtually plain sight!! It was surreal to say the least. I screamed with joy!! I cannot tell you how many times I looked through that drawer, to no avail. Even one of the twins, Morgan, upon hearing where I found them, said "...but Mom, isn't that the same drawer you and I looked in already?" It's a mystery to me, but I am not going to question God's gift! Thank you for those of you that prayed for me to find my wedding ring...I know it was truly an answer to prayer!
We trust you all had a wonderful and safe holiday season! We had a great holiday and spent a week in Rockford visiting family and friends, staying with Doug and Cindy Swanson. Ray really wanted to spend time with them and his family and friends one last time before the transplant. It was a wonderful and special time!
Our hope and prayer for all of you for this New Year 2012 is to have great blessings of love, faith, happiness and of course, good health!! Don't take your health for granted...which is so easy to do when you have it...but give continued thanks to God for your good health. Every day truly is a gift! We are so thankful for the gifts of true friendships and family that care so much...thank you for all your prayers lifted up for Ray during this time....we have no words to express how much you and your prayers mean to us!
Have a blessed day and week...next update when we have the official date of the transplant!
Love to all,
Teri and Ray
"Faith makes things possible...not easy"!
