Family and Friends,
Not alot of new news yet...but wanted to give a quick update. Ray continues to feel good and his blood counts remain up. He had a second bone marrow biopsy on Monday...we are awaiting results and I will update as soon as we receive. Should be in next 5-7 days. Results will tell us what % blasts he has now after 4 rounds of chemo....he started his chemo again this week as well. He is not tolerating this week's chemo as well as in the past...quite a bit of nausea this week, unfortunately. He continues to work everyday and just push through. He is amazing! I was out of town on a critical business meeting Sun - Wed this week, so was unable to be there for his biopsy. I felt really bad, but we thought it would be pretty uneventful, based on his first one back in August. However, this one was quite painful, as they explained they had to go much deeper in the bone marrow, for which there's no way to anesthetize the bone marrow. They wouldn't have allowed me in the room during the biopsy, but still, I wish I had been there with him. It was not pleasant and I hate that he was there by himself!
In any case, only one more day this week of chemo and then he's off until after the holidays in early Jan. By then we'll know what the biopsy results are and that will help determine the timing of his transplant and if there will be further chemo treatments before the transplant. I will update as soon as we know something...should definitely be before Christmas that we'll know something. As a reminder, Ray's blasts (basically leukemia cells) were at 5% initially; 20% = acute leukemia, which he has to avoid!! We have to do the transplant before he progresses into full acute leukemia. The dr did say that with his blood counts all up from the chemo, he doesn't expect the blasts to have increased. There's a direct correlation. So, we're not too worried about it, but will feel better once we know for sure what his blast count is.
We did have a relatively successful local move the weekend before Thanksgiving...still settling in. We had a lot of friends and family help...which was so wonderful. I had two 'estate sales' in the former house and we were able to make enough money to cover the cost of the move (we hired movers for the 'big stuff'), so that was a huge answer to prayer! On a sadder note, I never did find my wedding ring before we packed and moved...so I have very little hope of ever finding it now. I honestly don't think it's 'lost', as I mentioned on my previous post. Regardless, it is gone and as I said, even though its just a material thing, it represents Ray's love and our wedding day 24 yrs ago and so of course, I'm very sad, as would anyone be. Perhaps it will still turn up as we continue our unpacking, but not too much hope of that now that we've moved. I'm keeping it all in perspective and know there are much bigger, more important things to worry about and pray about and ask God's blessing on....but I do believe in miracles and so I haven't given up!!
We hope everyone is enjoying a wonderful holiday season and we are hoping to do the same! We have much to be thankful for....God is Good!
Love to all; we covet your prayers for Ray's transplant and full recovery!
Teri
Thursday, December 8, 2011
Monday, October 24, 2011
Ray's Progress Since Sept
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
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
Friday, September 9, 2011
Ray in Hospital - Infection - Update
Friends and Family,
I have been wanting to update but have been at the hospital with Ray since Tues and cannot access the blog from there for some reason, so here's a quick update and I'll add more this weekend when I come home again, hopefully with Ray!
He was admitted on Tues during his routine weekly dr appt. His blood clots in his leg and arm were suffering from infection and he wasn't responding to either the blood clot blood thinning medicine or the oral antibiotic he had been taking. His two injection sites in his stomach from the chemo also were severely infected and too sore to even have his shirt brush against them! They looked like severe chemical burns and I guess that's what they were in reality. The dr needed to give him some 'super' antibitotics that can only be given via IV, and thought it would only be a few days stay. Here we are on Friday, still in. Ray was hoping to go home today but he had a fever of 100 this morning and the dr wants him to stay; in addiiton, he doesn't think his infection is completely healed and needs more time with the meds he's on. Ray ended his first week with chemo last Friday; Thurs night he had a near 103 fever and chills and the dr prescribed some antibiotics, thinking there may be some kind of infection, or we were told it could also be a side effect of the chemo. This from the on call dr, not Ray's dr. The fever broke Thurs night and he went to the dr for his chemo shot on Friday am and then on to work all day. All was fine until about 4pm, when he was extremely nauseous and was vomiting at work and unable to drive home. A dear friend and coworker, Scott Cannon, drove him home and he walked in the door with another near 103 fever. This nausea and fever/chills continued every day through the long weekend....fever breaking each night, then starting up again in late afternoon. We thought it was 'normal' side effects of the chemo. Tues I took him in for his dr appt (check up) and procrit shot, and that's when the dr admitted him. He told us that we should have called the next day the fever returned, but we were never told that. He said daily fevers as high as Ray's was NOT a common side effect of chemo, but again, that was contrary to what the on call dr told us Thurs night. I feel horrible he suffered all weekend that way when he probably would/should have been admitted on Friday. Lesson learned and we will be calling the dr at the first sign of anything from here on out!!
Ray developed a second clot in his leg this week so he now has two in his left leg and one huge one in his left arm near the elbow. These infections are responding to the drugs, thank God, and we're hopeful he'll get to come home sometime this weekend. He hasn't slept well at the hospital (nor I) and he had a particulary rough night last night, the one night I left to come home and see the kids and take care of some things on the home front. His IV "exploded" in his arm and it took about 6 tries over 6 hours to get another one in that would 'take'. His veins are just not great right now for IVs. He was without the antibiotics all night, as a result, and that's what I believe caused his setback and fever to return. Just shows he wasn't ready to go home though.
In addition, Ray's blood counts all dropped severely this week. He had to get another (3rd) blood transfusion, which only helps his red blood cells. Also, for the first time, his platelets dropped significantly and are also now well below the normal range. I was very concerned about this but the dr isn't concerned; says its likely a result of the chemo..that initially all his counts will drop the first 3-4 months, and always his counts will drop days 10-17 of his chemo cycle. Wed was Day 10 and that was the day they all dropped. Right on schedule! He said they should 'recover' in a week or so and he thinks the platelets are still ok...just temporary reduction. His white blood count is extremely low and as you know, fights infection in our bodies. That's why his body cannot heal the blood clots or injection sites on his own and he needs the 'super' antibiotics.
Please continue to pray for his full recovery overall, but specifically right now for his infection to be completely healed and that he can go home soon. He has been in alot of pain as well. Finally, he did get an official update from the bone marrow transplant coordinator this week while he was in the hospital. Of his 7 siblings, 6 can be tested (one ineligible due to health issues)....5 have been tested and results in...0 match! Several are matches to each other, but no one is a match to Ray. He has one brother, Steve, who still has yet to be tested and he still has a 25% chance of being a match, so we are praying that will be the case. In the meantime, they have already put Ray on the national bone marrow donor program and have initiated a search for a match. This could take months, we are told. Ray's transplant is very urgent, as I believe I've mentioned, due to the type of chromosome damage he has to his bone marrow that puts him in the highest risk category for this disease. His particular type aggressively moves into acute leukemia (AML) and he needs the transplant before that happens. His blasts are at 4-5% now, and 20% = acute leukemia. The hope is that this chemo will reduce his blasts and increase his blood cell counts to put him in optimal condition for the best chance of complete cure/success with the bone marrow transplant. Of course, Ray was very discouraged to find out none of his siblings are a match so far with only one to go. But I reminded him that many people use unrelated donors and have complete cures, so he still has hope.
To make matters worse, we just found out this am that Ray's Dad is not doing well and is on full oxygen now to help him breathe. He is not eating well and struggling. We need to keep him in our prayers as well that he recovers. I know he has been so worried about Ray. He and his wife, Evelyn, came over this past weekend and we spent the afternoon with them; it was good for them to see Ray but thought he looked pretty weak. He was not feeling well then and was struggling with the fever on and off, but still a good visit. When I drove them home, I noticed his Dad's very heavy breathing and expressed concern to Ray. I'm not surprised he's now on oxygen. I just hope and pray he recovers and is back to feeling good again. His family needs him healthy and well!!
I will update more this weekend when I know that Ray is coming home. Thank you to all of you that have taken time to post a comment here and have emailed, FB, and called Ray these past few weeks. The encouragement and love you have all shown him at this difficult and scary time has really helped his spirits. Plesae continue to keep in touch with him and let him know you're thinking of him and praying for him when you get time out of your busy days and lives.
Love to all, Teri
I have been wanting to update but have been at the hospital with Ray since Tues and cannot access the blog from there for some reason, so here's a quick update and I'll add more this weekend when I come home again, hopefully with Ray!
He was admitted on Tues during his routine weekly dr appt. His blood clots in his leg and arm were suffering from infection and he wasn't responding to either the blood clot blood thinning medicine or the oral antibiotic he had been taking. His two injection sites in his stomach from the chemo also were severely infected and too sore to even have his shirt brush against them! They looked like severe chemical burns and I guess that's what they were in reality. The dr needed to give him some 'super' antibitotics that can only be given via IV, and thought it would only be a few days stay. Here we are on Friday, still in. Ray was hoping to go home today but he had a fever of 100 this morning and the dr wants him to stay; in addiiton, he doesn't think his infection is completely healed and needs more time with the meds he's on. Ray ended his first week with chemo last Friday; Thurs night he had a near 103 fever and chills and the dr prescribed some antibiotics, thinking there may be some kind of infection, or we were told it could also be a side effect of the chemo. This from the on call dr, not Ray's dr. The fever broke Thurs night and he went to the dr for his chemo shot on Friday am and then on to work all day. All was fine until about 4pm, when he was extremely nauseous and was vomiting at work and unable to drive home. A dear friend and coworker, Scott Cannon, drove him home and he walked in the door with another near 103 fever. This nausea and fever/chills continued every day through the long weekend....fever breaking each night, then starting up again in late afternoon. We thought it was 'normal' side effects of the chemo. Tues I took him in for his dr appt (check up) and procrit shot, and that's when the dr admitted him. He told us that we should have called the next day the fever returned, but we were never told that. He said daily fevers as high as Ray's was NOT a common side effect of chemo, but again, that was contrary to what the on call dr told us Thurs night. I feel horrible he suffered all weekend that way when he probably would/should have been admitted on Friday. Lesson learned and we will be calling the dr at the first sign of anything from here on out!!
Ray developed a second clot in his leg this week so he now has two in his left leg and one huge one in his left arm near the elbow. These infections are responding to the drugs, thank God, and we're hopeful he'll get to come home sometime this weekend. He hasn't slept well at the hospital (nor I) and he had a particulary rough night last night, the one night I left to come home and see the kids and take care of some things on the home front. His IV "exploded" in his arm and it took about 6 tries over 6 hours to get another one in that would 'take'. His veins are just not great right now for IVs. He was without the antibiotics all night, as a result, and that's what I believe caused his setback and fever to return. Just shows he wasn't ready to go home though.
In addition, Ray's blood counts all dropped severely this week. He had to get another (3rd) blood transfusion, which only helps his red blood cells. Also, for the first time, his platelets dropped significantly and are also now well below the normal range. I was very concerned about this but the dr isn't concerned; says its likely a result of the chemo..that initially all his counts will drop the first 3-4 months, and always his counts will drop days 10-17 of his chemo cycle. Wed was Day 10 and that was the day they all dropped. Right on schedule! He said they should 'recover' in a week or so and he thinks the platelets are still ok...just temporary reduction. His white blood count is extremely low and as you know, fights infection in our bodies. That's why his body cannot heal the blood clots or injection sites on his own and he needs the 'super' antibiotics.
Please continue to pray for his full recovery overall, but specifically right now for his infection to be completely healed and that he can go home soon. He has been in alot of pain as well. Finally, he did get an official update from the bone marrow transplant coordinator this week while he was in the hospital. Of his 7 siblings, 6 can be tested (one ineligible due to health issues)....5 have been tested and results in...0 match! Several are matches to each other, but no one is a match to Ray. He has one brother, Steve, who still has yet to be tested and he still has a 25% chance of being a match, so we are praying that will be the case. In the meantime, they have already put Ray on the national bone marrow donor program and have initiated a search for a match. This could take months, we are told. Ray's transplant is very urgent, as I believe I've mentioned, due to the type of chromosome damage he has to his bone marrow that puts him in the highest risk category for this disease. His particular type aggressively moves into acute leukemia (AML) and he needs the transplant before that happens. His blasts are at 4-5% now, and 20% = acute leukemia. The hope is that this chemo will reduce his blasts and increase his blood cell counts to put him in optimal condition for the best chance of complete cure/success with the bone marrow transplant. Of course, Ray was very discouraged to find out none of his siblings are a match so far with only one to go. But I reminded him that many people use unrelated donors and have complete cures, so he still has hope.
To make matters worse, we just found out this am that Ray's Dad is not doing well and is on full oxygen now to help him breathe. He is not eating well and struggling. We need to keep him in our prayers as well that he recovers. I know he has been so worried about Ray. He and his wife, Evelyn, came over this past weekend and we spent the afternoon with them; it was good for them to see Ray but thought he looked pretty weak. He was not feeling well then and was struggling with the fever on and off, but still a good visit. When I drove them home, I noticed his Dad's very heavy breathing and expressed concern to Ray. I'm not surprised he's now on oxygen. I just hope and pray he recovers and is back to feeling good again. His family needs him healthy and well!!
I will update more this weekend when I know that Ray is coming home. Thank you to all of you that have taken time to post a comment here and have emailed, FB, and called Ray these past few weeks. The encouragement and love you have all shown him at this difficult and scary time has really helped his spirits. Plesae continue to keep in touch with him and let him know you're thinking of him and praying for him when you get time out of your busy days and lives.
Love to all, Teri
Tuesday, August 30, 2011
Chemo Day 2 and Update on Blood Clots
Quick update: Ray had his 2 chemo shots this am and tolerated them well, no nausea so far today! He also got his procrit shot, also in the stomach area...so that's 3 in the stomach this am. The dr is continuing the procrit hormone shots despite the poor response to date (week 5) and the blood clot side effects.
Blood Clot Update: Ray was told by the nurse this am that she had spoken to the dr and he said he'd talked to the radiologist finally and he had found nothing wrong and no blood clot and could go home and no further follow up was needed. However, as luck (?) would have it, he ran into the good Dr on his way out (Dr was coming in for the day) and they engaged in a replay of the nurse's comments. The Dr. denied having had any conversation with the nurse at all and told Ray he could not leave until he talked with the radiologist, whom he called immediately. Turns out Ray DOES have a blood clot in both his leg and arm!! (Yes, you can get them in your arm!!) The good news is these are not the true life threatening deep vein clots. They are called "surface vein thrombophlebitis" as the clots are in the surface veins close to the surface of the skin. He now has to give himself 2 more injections/day for a month with another blood thinning medication to resolve these and prevent more or worse blood clots. Never at a loss for humor, Ray just joked about getting shot so many times now in so many places that he's fast running out of room for new shots! All of you who know Ray know he will try to deal with his journey with humor as much as possible. We are thankful the blood clots are not in deep veins that could be life threatening and requiring further hospitalization. It could be much worse! As for the nurse and her 'discussion' she had with the doctor, I'd love to be a fly on the wall for that one! I'm sure just the first of many missteps that can be made during this journey, as we're all only human. We just pray one of the mistakes that may be made won't be life threatening!! He is in God's hands and care and we have to trust that.
I promised more information on Ray's disease, how we got to this point, and what the BMT procedure is that lies ahead....look for another posting later this week on that. I won't plan on updating each of his chemo days this week unless there's a significant reaction or update. More to come as we get updates on his counts and when we find out if any of his siblings are a donor match. Each sibling has a 25% chance of being a match, so that's pretty good odds! We're hopeful as the sibling donor provides the best success rate! If not, we would aggressively search the nationwide bone marrow donor bank ..but hoping it won't come to that. Thank you so much to all his brothers and sisters for being so quick to get tested and so eager to help Ray in any way. This is awesome and he will owe his life to one of them in the months to come! What a blessing someone will get to be to Ray and our family!
Have a great week and until next time....we love you all, Teri
Blood Clot Update: Ray was told by the nurse this am that she had spoken to the dr and he said he'd talked to the radiologist finally and he had found nothing wrong and no blood clot and could go home and no further follow up was needed. However, as luck (?) would have it, he ran into the good Dr on his way out (Dr was coming in for the day) and they engaged in a replay of the nurse's comments. The Dr. denied having had any conversation with the nurse at all and told Ray he could not leave until he talked with the radiologist, whom he called immediately. Turns out Ray DOES have a blood clot in both his leg and arm!! (Yes, you can get them in your arm!!) The good news is these are not the true life threatening deep vein clots. They are called "surface vein thrombophlebitis" as the clots are in the surface veins close to the surface of the skin. He now has to give himself 2 more injections/day for a month with another blood thinning medication to resolve these and prevent more or worse blood clots. Never at a loss for humor, Ray just joked about getting shot so many times now in so many places that he's fast running out of room for new shots! All of you who know Ray know he will try to deal with his journey with humor as much as possible. We are thankful the blood clots are not in deep veins that could be life threatening and requiring further hospitalization. It could be much worse! As for the nurse and her 'discussion' she had with the doctor, I'd love to be a fly on the wall for that one! I'm sure just the first of many missteps that can be made during this journey, as we're all only human. We just pray one of the mistakes that may be made won't be life threatening!! He is in God's hands and care and we have to trust that.
I promised more information on Ray's disease, how we got to this point, and what the BMT procedure is that lies ahead....look for another posting later this week on that. I won't plan on updating each of his chemo days this week unless there's a significant reaction or update. More to come as we get updates on his counts and when we find out if any of his siblings are a donor match. Each sibling has a 25% chance of being a match, so that's pretty good odds! We're hopeful as the sibling donor provides the best success rate! If not, we would aggressively search the nationwide bone marrow donor bank ..but hoping it won't come to that. Thank you so much to all his brothers and sisters for being so quick to get tested and so eager to help Ray in any way. This is awesome and he will owe his life to one of them in the months to come! What a blessing someone will get to be to Ray and our family!
Have a great week and until next time....we love you all, Teri
End of Day 1 of Chemo - a new challenge and overview of Myelodysplasia
Family and Friends,
This morning Ray stated his day off with his first chemo injection (in his stomach - ouch!). He took his Zophran (anit-nausea pill) an hour before the shot and had only minimal nausea about 3 hours after the shot. He was able to eat a full plate of leftover homemade spaghetti (Mom's recipe...Ray's favorite!!) for lunch and then some KFC for dinner, so he ate pretty well today. It was good to see him eat so well today, as he's not had much of an appetite lately and has lost about 10 pds already since his journey began these last few months. He experienced some more severe nausea again this evening for several hours, popped another Zophran, and waited for it to pass. We're hoping tomorrow's shot and the rest of the week won't increase the nausea, as he is really wanting to continue working as much as possible before the bone marrow transplant.
Obstacle #1: Of course, you never know what to expect with this new journey, the new medications, how your body will react, etc....first off, he tried to pick up his Zophran anti-nausea pills yesterday to have them to take this am before the shot, and the pharmacist informed him the insurance company had denied paying for the prescription. He then informed Ray they were 'quite expensive'...as in $250 for 30 pills expensive!! Ray told him he couldn't afford them without the insurance, so the pharmacist said he'd contact the doctor to make a call into the insurance company to make them aware that they were 'necessary' in the managed care while going through chemo. Interesting they approved the chemo drug but not the drug to help one withstand the chemo! He did get this resolved with the insurance company late this afternoon, but not in time for his shot this am. As luck (?) would have it, Ray came across a bottle of unused Zophran from when he had his food poisoning bout several months ago (which actually is where his journey truly first began and his low blood counts were noticed to begin with!), so he was able to use those pills to get through today with minimal discomfort. God always has a plan and provides!!
Obstacle #2: Ray noticed late last week and over the weekend that his left shin and ankle were swelling and very sore and tender. We initially thought he must have hit his leg on something....he bruises easily now...but we noticed no bruise and he recalled no incident. The lower side of the shin and ankle became very hard and hot to touch and by this am, was spreading up his leg. He asked the nurse who administered his chemo shot about this and she sent him back to his oncologist, where he proceeded to wait for 2 hours to be 'squeezed in' amongst the scheduled cancer patients. The doctor examined him and said he needed to 'rule out' a blood clot and sent us to a totally different hospital several hours later to have a Doppler test (sonogram) on his leg to detect blood clots. (Also informed us that this blood disease puts Ray at a higher risk for blood clots in general and also the procrit shots have a severe side effect of blood clots, although more rare.) The technician told us he would send the test results to his radiologist, who would come in and talk to us. However, he returned saying the radiologist "found something' and would be calling Ray's oncologist with the results, who would in turn, call us. We asked if he could just come in and tell us directly, but he refused. Bizarre. Ray's dr never did get a call from the radiologist with the results, but assured us he would track it down first thing in the am. So, bottom line is that we should have these results in the morning when we drive downtown Dallas to get his second chemo shot at 7:45am. My Mom has had 3 blood clots in her leg and my brother one, so I'm fairly well versed in the look and feel and general symptoms of blood cots. However, I didn't put the symptoms together for a blood clot. It is alarming to us that if he does, in fact, have a blood clot, which can break loose and travel to your heart, lungs, brain, etc that can basically be life-threatening, that he was allowed to return home with no restrictions whatsoever. That leads me to believe perhaps he does not have a blood clot....I guess we will find out in the morning. In the meantime, he is keeping his leg elevated and doing minimal walking, 'just in case'. As a side note, Ray also has a similar hard knot in his left arm just inside/above his elbow, which is also very swollen and sore. I think the combination of both of these similar swellings also threw us off the track of a blood clot...I've never heard of a blood clot in one's arm. We thought perhaps it was a reaction to the procrit and wondered if these were lymph nodes or something? (The Dr. had no comment/idea on the arm swelling...said it was non related and definitely not a blood clot.) I guess we're to dismiss that concern???
Some details about the chemo drug and his regimen: Ray is getting the drug Vidaza, which basically is used to try and stop the growth of immature, 'useless' red and white blood cells. These immature cells are called 'blasts' and basically never mature into functioning cells. They crowd out the healthy, mature cells (resulting in low blood counts) and can end up resulting in full blown, acute leukemia. These 'blasts' are also referred to as leukemia cells. Ray currently has 4-5% blasts; 20% = acute leukemia. The question is how fast are the blasts increasing? Ray's particular kind of myelodysplasia, or MDS, is a rather aggressive form and one that moves quickly to leukemia, which is why the urgency in the BMT. The course of Ray's chemo regimen will be one week on, 3 weeks off. So this week, he will have shots Mon - Fri, then take 3 weeks off, then repeat the cycle. We don't know how long the cycle will last; it all depends on his bone marrow's responsiveness. We have been told there is a 60-70% positive response rate from this drug, but it is short lived. It is not a cure. The doctor has advised us also that initially we can expect Ray's blood counts to go down even lower than they are currently; however, after 3-4 months max they should start responding and improving. We are also praying they won't go too low during this time and that he will be healthy to sing at Ashley's wedding and walk her down the aisle on Oct 14th! She just mailed the invitations, so we can't change the date now! :) The 'plan', per the oncologist/hematologist (still hard to get used to the idea that Ray has an 'oncologist', as if everyone has one of those!), is to get Ray's blood counts up and eliminate as many blasts as possible, in order to prepare him for the most successful outcome possible with a bone marrow transplant (BMT), which can result in full cure. Of course, that is what we are paying for and asking you all to pray for also. The BMT is the only cure for Ray's blood disease, which is also commonly referred to as "pre-leukemia". I will spend more time tomorrow or the next day explaining more details about Ray's disease itself (is this cancer or not?), how we discovered he had this, his bone marrow biopsy results, the 6 of his 7 wonderfully supportive siblings (1 sister is in remission herself from recent lymphoma and is not a candidate) that are currently undergoing testing to determine if they might be a bone marrow donor match and give Ray the ultimate gift of life, and the BMT procedure itself that Ray is facing as soon as he is 'healthy' enough to go through it. You should know that the BMT procedure itself is very risky and scary and there are many side effects and potential complications and long term health risks associated with this; however, as I said, it is the only cure...and so Ray begins his journey that started with a case of food poisoning, chest pains requiring a second angiogram to rule out another heart attack in the waiting or failed stent from his heart attack last Thanksgiving (turns out severely low red blood cells causes chest pain!), low blood counts revealed in routine blood work, a blood transfusion, a month's worth of procrit hormone shots (also in his stomach!) with no response to date, and now the chemo. Ray's journey will end with the BMT and we believe, a cure.
I will post an update tomorrow on his 2nd day of chemo and the results of his blood clot tests. Please continue to keep Ray in your prayers and know that we covet your prayers and love and friendship more than words can say. Thank you so much for the words of encouragement and support many of you have already sent Ray via email, text, phone calls, FB, or posting a comment here on this blog. He has read every one of them and each one has helped arm him with the right spirit to fight this battle ahead of him. Knowing he has an army of prayer warriors in friends and family that truly care and love him probably helps him as much as the chemo or other drugs to help fight this disease and its progression to acute leukemia. Thank you so much! We love you all!
More to come tomorrow on his blood clot results and Day 2 of Chemo....
Love to all, Teri
This morning Ray stated his day off with his first chemo injection (in his stomach - ouch!). He took his Zophran (anit-nausea pill) an hour before the shot and had only minimal nausea about 3 hours after the shot. He was able to eat a full plate of leftover homemade spaghetti (Mom's recipe...Ray's favorite!!) for lunch and then some KFC for dinner, so he ate pretty well today. It was good to see him eat so well today, as he's not had much of an appetite lately and has lost about 10 pds already since his journey began these last few months. He experienced some more severe nausea again this evening for several hours, popped another Zophran, and waited for it to pass. We're hoping tomorrow's shot and the rest of the week won't increase the nausea, as he is really wanting to continue working as much as possible before the bone marrow transplant.
Obstacle #1: Of course, you never know what to expect with this new journey, the new medications, how your body will react, etc....first off, he tried to pick up his Zophran anti-nausea pills yesterday to have them to take this am before the shot, and the pharmacist informed him the insurance company had denied paying for the prescription. He then informed Ray they were 'quite expensive'...as in $250 for 30 pills expensive!! Ray told him he couldn't afford them without the insurance, so the pharmacist said he'd contact the doctor to make a call into the insurance company to make them aware that they were 'necessary' in the managed care while going through chemo. Interesting they approved the chemo drug but not the drug to help one withstand the chemo! He did get this resolved with the insurance company late this afternoon, but not in time for his shot this am. As luck (?) would have it, Ray came across a bottle of unused Zophran from when he had his food poisoning bout several months ago (which actually is where his journey truly first began and his low blood counts were noticed to begin with!), so he was able to use those pills to get through today with minimal discomfort. God always has a plan and provides!!
Obstacle #2: Ray noticed late last week and over the weekend that his left shin and ankle were swelling and very sore and tender. We initially thought he must have hit his leg on something....he bruises easily now...but we noticed no bruise and he recalled no incident. The lower side of the shin and ankle became very hard and hot to touch and by this am, was spreading up his leg. He asked the nurse who administered his chemo shot about this and she sent him back to his oncologist, where he proceeded to wait for 2 hours to be 'squeezed in' amongst the scheduled cancer patients. The doctor examined him and said he needed to 'rule out' a blood clot and sent us to a totally different hospital several hours later to have a Doppler test (sonogram) on his leg to detect blood clots. (Also informed us that this blood disease puts Ray at a higher risk for blood clots in general and also the procrit shots have a severe side effect of blood clots, although more rare.) The technician told us he would send the test results to his radiologist, who would come in and talk to us. However, he returned saying the radiologist "found something' and would be calling Ray's oncologist with the results, who would in turn, call us. We asked if he could just come in and tell us directly, but he refused. Bizarre. Ray's dr never did get a call from the radiologist with the results, but assured us he would track it down first thing in the am. So, bottom line is that we should have these results in the morning when we drive downtown Dallas to get his second chemo shot at 7:45am. My Mom has had 3 blood clots in her leg and my brother one, so I'm fairly well versed in the look and feel and general symptoms of blood cots. However, I didn't put the symptoms together for a blood clot. It is alarming to us that if he does, in fact, have a blood clot, which can break loose and travel to your heart, lungs, brain, etc that can basically be life-threatening, that he was allowed to return home with no restrictions whatsoever. That leads me to believe perhaps he does not have a blood clot....I guess we will find out in the morning. In the meantime, he is keeping his leg elevated and doing minimal walking, 'just in case'. As a side note, Ray also has a similar hard knot in his left arm just inside/above his elbow, which is also very swollen and sore. I think the combination of both of these similar swellings also threw us off the track of a blood clot...I've never heard of a blood clot in one's arm. We thought perhaps it was a reaction to the procrit and wondered if these were lymph nodes or something? (The Dr. had no comment/idea on the arm swelling...said it was non related and definitely not a blood clot.) I guess we're to dismiss that concern???
Some details about the chemo drug and his regimen: Ray is getting the drug Vidaza, which basically is used to try and stop the growth of immature, 'useless' red and white blood cells. These immature cells are called 'blasts' and basically never mature into functioning cells. They crowd out the healthy, mature cells (resulting in low blood counts) and can end up resulting in full blown, acute leukemia. These 'blasts' are also referred to as leukemia cells. Ray currently has 4-5% blasts; 20% = acute leukemia. The question is how fast are the blasts increasing? Ray's particular kind of myelodysplasia, or MDS, is a rather aggressive form and one that moves quickly to leukemia, which is why the urgency in the BMT. The course of Ray's chemo regimen will be one week on, 3 weeks off. So this week, he will have shots Mon - Fri, then take 3 weeks off, then repeat the cycle. We don't know how long the cycle will last; it all depends on his bone marrow's responsiveness. We have been told there is a 60-70% positive response rate from this drug, but it is short lived. It is not a cure. The doctor has advised us also that initially we can expect Ray's blood counts to go down even lower than they are currently; however, after 3-4 months max they should start responding and improving. We are also praying they won't go too low during this time and that he will be healthy to sing at Ashley's wedding and walk her down the aisle on Oct 14th! She just mailed the invitations, so we can't change the date now! :) The 'plan', per the oncologist/hematologist (still hard to get used to the idea that Ray has an 'oncologist', as if everyone has one of those!), is to get Ray's blood counts up and eliminate as many blasts as possible, in order to prepare him for the most successful outcome possible with a bone marrow transplant (BMT), which can result in full cure. Of course, that is what we are paying for and asking you all to pray for also. The BMT is the only cure for Ray's blood disease, which is also commonly referred to as "pre-leukemia". I will spend more time tomorrow or the next day explaining more details about Ray's disease itself (is this cancer or not?), how we discovered he had this, his bone marrow biopsy results, the 6 of his 7 wonderfully supportive siblings (1 sister is in remission herself from recent lymphoma and is not a candidate) that are currently undergoing testing to determine if they might be a bone marrow donor match and give Ray the ultimate gift of life, and the BMT procedure itself that Ray is facing as soon as he is 'healthy' enough to go through it. You should know that the BMT procedure itself is very risky and scary and there are many side effects and potential complications and long term health risks associated with this; however, as I said, it is the only cure...and so Ray begins his journey that started with a case of food poisoning, chest pains requiring a second angiogram to rule out another heart attack in the waiting or failed stent from his heart attack last Thanksgiving (turns out severely low red blood cells causes chest pain!), low blood counts revealed in routine blood work, a blood transfusion, a month's worth of procrit hormone shots (also in his stomach!) with no response to date, and now the chemo. Ray's journey will end with the BMT and we believe, a cure.
I will post an update tomorrow on his 2nd day of chemo and the results of his blood clot tests. Please continue to keep Ray in your prayers and know that we covet your prayers and love and friendship more than words can say. Thank you so much for the words of encouragement and support many of you have already sent Ray via email, text, phone calls, FB, or posting a comment here on this blog. He has read every one of them and each one has helped arm him with the right spirit to fight this battle ahead of him. Knowing he has an army of prayer warriors in friends and family that truly care and love him probably helps him as much as the chemo or other drugs to help fight this disease and its progression to acute leukemia. Thank you so much! We love you all!
More to come tomorrow on his blood clot results and Day 2 of Chemo....
Love to all, Teri
Sunday, August 28, 2011
Ray's First Day of Chemotherapy
Ray is having his first chemotherapy "shot" tomorrow morning at 8am. He will also continue with his Procrit hormone shot that he has been taking once a week for a month now with little response on his blood counts. This particular type of chemo is known for making his bone marrow start producing higher counts of both red and white cells. There is a 60-70% response rate with this drug. The "plan" is to get Ray's blood counts higher and kill his "blasts" (leukemia cells) so that he will be in optimal condition for his bone marrow transplant. The Dr. has said that this chemo may take 3-4 months to start working and will make his counts go down initially, so he will have to be watched very carefully. It will make him even more tired and short of breath than he already is, and may make him very nauseas (the Dr. has prescribed medicine for this side effect). It should not, however, make his hair fall out. Please pray for minimal side effects and great results. He will be taking this chemo every day this week, Monday- Friday, then 3 weeks off and then he will repeat this cycle until we have the results we need.
More to come this week.......I will post an overview of his illness, Myelodysplasia, for those of you who may not be aware of how we got "here" and what exactly he and his family are facing. Thank you for your love and support and most of all your prayers. You can always reach Ray at 972-400-5621 or FaceBook. He would love to hear from everyone!
More to come this week.......I will post an overview of his illness, Myelodysplasia, for those of you who may not be aware of how we got "here" and what exactly he and his family are facing. Thank you for your love and support and most of all your prayers. You can always reach Ray at 972-400-5621 or FaceBook. He would love to hear from everyone!
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