Family and Friends,
First of all, my apologies for the delayed update since Sept 9. How did that much time get away from me since I've updated this blog? I'm so sorry and will try my best to be more timely in the future. All I can say in my defense is ALOT HAS HAPPENED - we've had chemo again, a funeral, a wedding, house hunting and preparing for a move/new home....and life in general with working full time, traveling, and raising a family of 7.....Alot to update...consider yourself warned...grab another cup of coffee - here goes...
SUMMARY of CURRENT STATE: Before I get into alot of details (and for those of you that don't have time or care to know the details!), I should first and foremost share with you that Ray is actually feeling better than he has since he was first diagnosed. He is feeling stronger and getting his appetite back. He gained 3 pounds since his lowest point and has not had a transfusion since he was in the hospital in Sept the week of Labor Day. He had been having one every 2 weeks and not one since he's been taking the chemo!! PTL!! This is GREAT news in and of itself! Too many blood transfusions can cause excessive iron in your blood, which creates other significant problems, so we're glad for this. This also means his red blood cell count is improving, which directly correlates with his need for blood transfusions. The chemo is starting to work in slowly improving his white and red blood cell counts...not a major difference yet, but significant enough that he feels better, is less tired, and doesn't need the transfusions. The ONLY count that is not getting better is his platelets...please pray for these to improve. He had 'normal' platelet ranges until his hospitalization from the blood clots and his first chemo; the dr is unsure if it is due to the blood thinners he's taking to ward off any new blood clots, or perhaps the disease itself just finally attacking the platelets now. Either way, they are VERY low and he has to be careful even of nicking himself while shaving, as he could end up in the ER with uncontrollable bleeding from even this small cut. He has had his 2 rounds of chemo now...the third one will come likely in the next two weeks. His 3 blood clots have all finally disappeared, and he still takes a daily morning injection of a blood thinner to keep new ones from cropping up. He still takes his weekly procrit hormone shot, although no one is quite sure if this is helping or not. The dr seems reluctant to stop it, in case it 'might' be helping....? It costs $1800 per shot...so I guess someone's happy he's still taking them!! :) Thank goodness Ray has good insurance to cover the majority of this cost at least. The costs we have to pay are mounting and that's yet another source of stress for Ray (and me), but we're just trying to take it one day at a time and focus on his full recovery, whatever the cost may be financially. You cannot put a price tag on someone's life, that's for sure. So, we do whatever is necessary, knowing the bills will still be there tomorrow...and the next day...and the next day. Again, we are trusting in God. So many of you have asked for specifics of Ray's disease and treatment so you know specifically what to pray for...I am trying to provide all that detail to you through this blog, and just please add a prayer to help Ray not be too worried about the finances of this and future bills, so it doesn't add to his stress or detract from his need to fully focus on his recovery. It is certainly the least of our worries, in and of itself, but when it adds to his stress level, then I worry. I don't want him worrying about anything but getting stronger and better and fighting this with all he has!! Thank you.
Bringing you up to date/some details from recent weeks: He had a bit of a scare when it was time for his second chemo round a few weeks ago....we went to the hospital for the chemo (which this time he was set to receive it via transfusion instead of the extremely painful shots which last time got horribly infected and helped put him in the hospital for a week, if you recall). However, his blood work that morning revealed very low counts and the dr couldn't zap him with more chemo, which always has short term effects of lowering your blood counts days 10-17 after the chemo. He couldn't sustain lower counts; his numbers had all dropped significantly from round 1 chemo 4 weeks earlier. The cycle does cause temporary lower blood counts, as mentioned, but by weeks 3 and 4, your counts should start climbing back up significantly, and in Ray's case, that still had not happened and it was week 4. In fact, they were significantly lower than before he started the first chemo round. The dr seemed both surprised and alarmed by this, stating it could mean one of two things. #1 - his disease was progressing even more rapidly than anticipated with his aggressive form of the disease and causing the counts to decrease, despite the chemo (meaning he also was not responding to the chemo), or #2 - his body just needed an extra week or two to fully recover from the chemo and he would be on a 5-6 week cycle vs a 4 week cycle for the chemo. This news came at the same time that we learned that NONE of his 7 brothers and sisters were a match for a bone marrow donor, even though each one had a 25% chance of being a match. Needless to say, this was a tough week for Ray and his spirits were down. He was very concerned that his disease had progressed and was causing the low blood counts. However, when he returned a week later, Mon Oct 3, his white and red blood counts were back up and he was able to start round two of chemo. I told him I never thought I'd be praying that he could take chemo!! His tranfusion went smoothly and he experienced some nausea but nothing major like the first week, and he didn't have to suffer from the painful injections or have any infections as a result. The transfusion takes about 45 minutes total, vs a 5 min shot, and he hated to take the extra time away from work, especially when he has to drive all the way downtown Dallas for the chemo. However, it was well worth it and he just makes up the work time earlier or later in the days. I might add that Ray is so blessed to be working for ESI - his manager and coworkers have provided him with such compassion and support during this ordeal. His manager (VP), Matt Lane, has been amazing in his support and concern he has shown Ray. We count him, his coworkers, and ESI as a huge blessing in his life right now and we are so grateful for their understanding and support. Of course, Ray gives it his all...going in everyday after chemo, giving his best, but he has had to miss some work with the chemo treatment and hospitalization and they offer nothing but support and love. They probably have no idea how much this has meant to Ray...what a blessing!
Donor update: So, even though none of his siblings are a match, they enlisted Ray in the worldwide donor registry and to date they have found a 32 year old man in Germany that matches 9.5 out of the 10 markers, so ALMOST a perfect match. They are still searching for the perfect 10 match but the transplant dr is going to let us know how important the missing .5 marker is - prelim news is that it might not be too significant and they could go ahead with the transplant if they don't find a perfect '10'. The issue is that without a perfect 10 match, he is at risk for what is called "host vs graft" disease...which basically means his newly donated bone marrow would start attacking his own organs...ie heart, liver, kidney, skin, even his eyes (potentially causing blindness), etc. It's kind of the opposite of organ rejection, but equally life threatening! So, they are still searching for the perfect match, but Ray feels more at peace knowing they at least have found a 9.5, should his disease start progressing quickly to the acute leukemia. Again, this is a bit of a race against time for him in that he has to have the bone marrow transplant BEFORE his disease turns into acute leukemia (AML), which his aggressive form of it tends to quickly do. Once it turns into full blown AML, he cannot have the transplant until they could get the AML into remission, and this form of AML is apparently highly resistant to treatment, making that very difficult. That was the real scare a few weeks ago when he didn't seem to be responding to the chemo at first....if he was moving into AML and had no donor, there would be little anyone could do to cure him. Apparently, the dr has informed us that one of Ray's 10 markers is 'very rare', making it challenging to find that perfect 10 match. Our church, Temple Baptist, is trying to coordinate a bone marrow 'drive' of sorts to get everyone that wants to be tested for a possible match. While the odds are against it (so says our dr), you never know if a perfect match could be living right next door to you, or sitting in the pew right next to you! God could lead us to his perfect match in stranger ways....you just never know. We are trusting in Him to find that perfect match if they exist, and if not. praying that this 9.5 match in Germany will be a strong match and not result in the 'host vs graft' disease that he would be at risk for.
Next Steps: The dr is going to do a second bone marrow biopsy in the next month or two at most, to check his 'blasts' - remember I spoke of these in one of my initial posts. These 'blasts' are the immature, useless cells that start crowding out the strong, mature cells, and are basically the 'leukemia' cells. His first biopsy revealed he had 4-5% blasts....once he reaches 20% it is full blown acute leukemia, so he has about 15% to go. Again, he has to have the transplant before it reaches this stage. The chemo is supposed to be not only increasing his blood counts in prep for the transplant, but also reducing the blasts in his blood and bone marrow. The biopsy is the only test that can tell us how many blasts he has. All this to again prepare his body for the highest degree of success with the transplant. The higher his counts and the lower his blasts at time of transplant, the better chance for a successful transplant and complete cure. We know his counts are going up...slowly but surely....and we're praying his blasts are coming down too...or at least not increasing. We are unsure of the timing of the transplant....we will know more with the results from the next biopsy, which again will be in th next few months most likely...or by end of year. The dr has indicated that as soon as he sees the results he wants with the chemo, he will go for the transplant, assuming a donor is found. He will not wait, as everything could take a turn for the worse at any time...he doesn't know how long the positive results from the chemo will last...but he will not risk waiting he said, again, due to Ray's aggressive form of the disease.
Ray's Dad: I know the last time I updated this blog, Ray was being released from the hospital after a week's stay (unexpected) and his Dad had just started having trouble breathing. We checked out of the hospital and went directly to visit Ray's Dad...he was on oxygen and struggling with every breath. In addition, his legs and feet were extremely swollen, evidence he was retaining alot of fluid, which was hard on his kidneys. He refused to go to the hospital, and unfortunately, the very next day, Sunday, Sept 11, Ray's Dad, Bill, 89, went to be with his Lord. He died in his home while sleeping, and they said he didn't suffer. After he visited with Ray, his wife Evelyn told us that night that he seemed better - his breathing became less labored and he was able to eat some dinner. However, it was just too much on his body and he was unable to recover. Ray, already in a very weakened state himself from a week in the hospital and still recovering from the 3 blood clots, infections and fever, was devastated at his Dad's passing. We had alot of family come in for the funeral that week and it was a bittersweet time of loving and companionship and reminiscing on his Dad's wonderful and full life. It was a huge loss to the family but in a small way, it served to strengthen Ray to spend time with his brothers Bill and Jon and sister Terri and their families, all from out of town.
Other 'news': Just a quick note to share with you another major blessing...last Friday, Oct 14, our oldest daugher, Ashley, married her boyfriend of 2 yrs, Zach Worley...and Ray was healthy enough to walk her down the aisle and sing
"Cinderella" during the ceremony. (Ok, he had it taped the week before, 'just in case' he wasn't feeling well enough to sing 'live'...since that was the week his counts were expected to drop from the chemo. Turns out, he was healthy enough, but emotionally it would have been quite challenging, so turned out for the best and the taped version was absolutely beautiful!!) It was a beautiful day and one we will all remember forever...I'm so thankful Ray was feeling good and able to enjoy the moment. Family and friends from all over the US drove and flew in to share in the day; Ray's best friend, Doug Swanson, drove down from Rockford, IL with his daugher, Liz...a 'co-maid of honor' with her sister, Savana...as Ashley's life long best friend. Having Doug here with Ray to share in our joy and celebration was just the icing on the cake!! It truly did Ray's heart good to spend that time with Doug, as well as his sister Phyllis and niece Amy, who drove down from Springfield, MO! Our DEAR friend and part of our family, Travis Watson, also flew in from VA...his love and support has been nothing short of amazing, from being a 'big brother' to Ashley with her wedding to being there for Ray and me since Ray's journey started, in unbelievable ways I can't go into now. Thank you Travis....we love you like a son! Thank you to all of our out of state family and friends who traveled so far to share the joy of this day with Ashley and our family...it meant so much to me and Ray, especially. (Chelsey, BJ, Madison and Lauren, my Mom and sister, Lori and her kids, and my best friend of 39 yrs -since 7th grade - Sandra!) After all that has transpired these past several months, it was nice to share in some joy and happiness and make some GOOD memories again for a change!!
That's about it....I'll update as soon as there is 'new news'...either with the next round of chemo, donor news, or the bone marrow biopsy...which will be a critical test for him in determining the status of the disease progression and response to the chemo treatments. Look for another blog in the next 2 weeks...his next chemo is tentatively scheduled either the week of Oct 31 or Nov 7th, depending on his blood counts.
Final prayer requests: The house we've been leasing for a year sold a few weeks ago and we are now moving about 5 miles away the weekend before Thanksgiving...weekend of Nov 18th. This is actually probably a blessing in disguise, as much as we hate to move, we will now be settled without worrying about having to move in the middle of Ray's tranplant, which would have been impossible and has been another source of stress for us these past few months. Ray will not be able to move us physically, as he has always done in the past, and we cannot afford professional movers for everything, so please pray that we have enough family and friends to help that weekend and that it not be too much of a burden on anyone, physically or otherwise. We hate to ask anyone for help with something as laborous as moving...but we are eternally grateful to any and all that can find the time in their busy schedules to help...if even for a few hours. Please pray that as I get estimates from movers for some of the heavier items, that it is within our limited budget!! (Finally, and this is personal for me...but thought I'd add it here as long as we're naming prayer requests...I lost my wedding ring a few weeks ago on top of everything else. I have looked everywhere and still no ring. (This is where I use my very own made-up-word "cantbelievable" - pretty self explanatory and not new to those that know me well!) Cantbelievable!!! Please pray that if it's been misplaced in the house, that we find it before we move...as I'm so afraid if we don't, it will be lost forever. I am beginning to fear I may have left it out on my nightstand when there was a house showing and it may have been stolen...although I can't be sure and that's utterly unimaginable to me...but that's the only place I ever put it, other than on my finger. I have no idea how I could possibly lose my wedding ring after 24 years! Anyone's wedding ring is special beyond words...and with what Ray's going through right now, its even more precious to me and I have been heart sick at the loss. We have no insurance on it; it is irreplaceable to me for what every bride feels on her wedding day and everyday after...yet cannot find words to describe. I am still hopeful it will be found. I know it is just a material 'thing' and is unimportant in the grand scheme of things, but I must admit I cherish it and Ray's love it symbolizes...and I desperately am praying for a miracle for this too. In case you want to visualize it, its a 1.5 ct pear shape solitaire in a plain platinum setting. Thank you for your prayers!)
Thank you again...dear family and friends...for your thoughts, prayers, concern and love for Ray as he goes through this journey. You are all part of his journey and we truly cherish your love and friendship. You mean so much to Ray and our family. Thank you for taking time to even read up on Ray's updates and I promise to be more consistent with my updates so that it isn't one LONG blog....!!! We all continue to put all of our faith and trust in God....we know He makes no mistakes and pray for His will and timing...but desperately hope His will is to see Ray cured with a successful bone marrow transplant so that he walks all of his next 3 daughters down the aisle and sees our son Jordan married....and of course then gets to know the joy of being a grandpa someday too! We just celebrated our 24th anniversary on Oct 10th and are praying for another 25 at least! I continue to tell Ray I know we will grow old together...although admittedly, somedays I feel like we're already there! :)
God is Good!
Love to all, Teri (and Ray)
Ashley and Zach, Jordan, Savana, Raegan and Morgan
