Friday, May 4.... RAY HAS PNEUMONIA AND IS IN ICU
PLEASE PRAY FOR RAY TODAY. He developed a high fever Wed night and drs finally found out the source via chest xray taken at 3am last night. He has pneumonia and his blood pressure is severely low. His heart rate is very high also. They have him on oxygen and are giving him vasopressin to help raise his blood pressure through this critical time. This is all very scary and very serious, as you can imagine, with such a diminshed immune system. He still has some white blood cells, but very few as the chemo is doing its job in killing all of his white and red blood cells and platelets He is getting a platelet transfusion today and just received a red blood cell transfusion as well.
Please read last night's blog update for more details on progress ....but I wanted to send this quick update and ask for special prayer for Ray today that the antibiotics work to eliminate his pneumonia and that his blood pressure increases. The dr is concerned about a blood infection that could be very serious. So far all blood tests have come back negative, which is a good thing.
We covet all prayers especially at this critical time!!
With love, Teri
Friday, May 4, 2012
May 3 - Day 9 - TRANSPLANT DELAYED UNTIL FRIDAY
Family and Friends,
Today is DAY 9 of the transplant journey for Ray. It is Thurs eve, technically Fri am at 3 am. Ray did extremely well through the 6 days of chemo with the only side effect being fluid retention. The Dr refers to this time in the transplant journey as 'the honeymoon'. (As I believe I mentioned earlier, he received 2 years' worth of chemo in 6 days!) He showered and dressed every am and we went for multiple daily walks, Ray donning a mask and pulling his 'tree' of IV meds alongside us everywhere he went. We visited the beautiful prayer garden every day. I beat him in Scrabble because he said he didn't want me to go easy on him just because he is sick and getting a transplant! :) He ate 3 good meals each day with no nausea. He was given so many fluids to help flush the chemo quickly out of his body to prevent permanent kidney or bladder damage, that he gained 10 pds the first 2 days! He gained a total of 14 pds after the first 5 days. The kids joked on Sunday that he looked like he was wearing a "fat suit"...they've never seen him heavy so it was quite different to see him so puffy and full of fluids. He then actually lost 8 lbs in one day as they gave him some 'lasix' to help eliminate the fluid buildup. Never knew a person could gain and lose so much weight in one day! Then yesterday early afternoon, Wed, he was given an antibiotic that he is known to have had severe reactions to and he told the nurse this. She said he had to have this specific antibiotic. Within 15 min of taking it orally, he developed a severe stomachache that he could not tolerate without pain meds. He then started spiking a fever and was very nauseous and vomited. He was given additional different antibiotics and the Dr decided not to give him the specific antibiotic that caused his initial distress anymore. Another nurse told us he could have been given that antibiotic via IV and it wouldn't have upset his stomach at all. Another nurse told us it is a derivative of penicillin, which Ray is severely allergic to. I haven't had a chance to verify this via google or otherwise. Either way, he won't get it again and they are saying that is not the cause of his high fever. However, they cannot find the cause of the infection and his fever. So far all his blood cultures have come back negative. They are hoping for more results tomorrow. They explained that they are giving him a 'broad' antibiotic since they don't know the source of infection and cannot give a more specific antibiotic. It is not ideal. His temp is now 103.2 and he has had this since early afternoon Wed. He also has very low blood pressure (80/44 a while ago), and the nurse just told me that if his top number goes down to 70, he goes to ICU, which they have on this same floor. His heart rate is 114, which they are also very concerned about. They just came in and did a chest xray to rule out pneumonia. Will get those results tomorrow am hopefully. He has also developed very severe mouth ulcers and therefore he cannot really eat or talk very easily. He can only drink liquids and very soft foods. They won't let him get up from his bed with his blood pressure so low right now. They believe he is dehydrated, which is also causing the lower blood pressure.
SPECIFIC PRAYER REQUESTS RIGHT NOW: Please pray that the Drs will find out the source of his infection and what is causing his fever, so that they can treat it in the most efficient manner with the best antibiotic and eliminate his high fever. Pray also for his mouth sores to get better and that he is able to do his mouth rinses again to help prevent any new ones. Please also pray for his blood pressure to get back to normal as quickly as possible. PRAY FOR ALL TO GO WELL WITH HIS TRANSPLANT TOMORROW!
DELAYED TRANSPLANT DATE - Ray was supposed to have his transplant today (Thurs), but yesterday we were told it would be delayed one day due to the new stem cells not arriving here from his donor in Canada until tonight. He will receive his transplant at noon tomorrow (Fri), regardless of his fever or any other complication. Everything is well timed and he cannot wait any longer...he has to receive the new stem cells within a specific window of time after receiving the chemo.
I think the hardest thing right now is not knowing what kind of infection he has so that he can be treated in the best manner. He wasn't supposed to get 'sick' from the chemo until 2-4 days after the transplant, so we are a bit surprised that he is so sick already. Having said that, everyone reacts differently and unexpected reactions are the 'norm' here in this tranplant unit....so we really don't have a right to be surprised. Anything can happen. His spirits are good, though, and we are remaining strong in our faith that he is in God's hands and that God is the ultimate Healer and will carry Ray through this, according to His will. It is so hard to stand by and watch a loved one go through this....but we are thankful he is not alone and we know he is in God's hands. No better place to be!
I will update this again tomorrow or Sat with news of the fever, blood pressure, and how his transplant went. Hopefully all will go well and he will start feeling better very soon.
SPECIAL THANKS: Everyone has been so wonderful with the cards and calls and visits. They have been such an encouragement to Ray. Family and friends have helped the kids with meals and laundry and just wonderful heartfelt visits and calls. Ray and I have been so worried about the medical bills and his loss of partial income and he got a call yesterday that he isn't eligible for long term disability due to this being a 'pre-existing' condition, so he was a bit down. However, none of that matters in comparison to his healing and recovery and we know that God will help provide the rest. Your prayers, love, support, and visits and phone calls and texts DO make a difference!! Thanks for taking the time out of your busy schedules! A special thanks to our oldest daughter, Ashley, who has been an amazing support to both me and Ray this last week....helping take such good care of her Dad! She has been here almost everyday and has really helped brighten Rays' spirits. Ray's brother, Billy and dear friend of over 45 yrs, Doug Swanson, drove here from Illinios this week to be with him. What a blessing having them here has been! Our dear friends Mike and Carie and sister in law Betty have also been so supportive and a special encouragement, helping with meals and visits and daily phone calls. So many others as well....too many to name. You know who you are and thank you so much!
Our church family at Temple Baptist has been so wonderful, providing meals and visits and prayers. Ray received an envelope full of prayer cards yesterday from church, which really was a huge blessing to him! We know that MANY churches around the country are also praying faithfully for Ray and we appreciate it more than words can say. (Temple Baptist in TX, Faith Baptist in NH, Berean Baptist in IL, South Haven Baptist in TN, North Valley Baptist in CA to name a few) It really gives us peace and comfort to know so many wonderful churches, Pastors, and church families are lifting Ray up in prayer for his healing!
Another huge source of comfort comes from both Ray and my work. Ray's work and manager has been so supportive; his manager, Matt and several of his co workers visited him this week...really brightening his day! He just loves his job and the people he works with and already misses it. His work and especially his manager and co workers have been so supportive and concerned and just amazing. My work has been equally supportive and caring and it has just made it so much more peaceful and taken that burden off of our shoulders. I have ample time off to spend this critical time supporting Ray and I am so appreciative. I have a wonderfully caring and supportive manager, executive staff, and my own team full of support and thoughts and prayers. It means more than words can say.
Thanks again and may God continue to bless you and yours with healthy families and loved ones. Our health is so often taken for granted and good health is such a blessing.
Check back in a day or two for an update on Ray's transplant and his fever!!
Love to all!
Today is DAY 9 of the transplant journey for Ray. It is Thurs eve, technically Fri am at 3 am. Ray did extremely well through the 6 days of chemo with the only side effect being fluid retention. The Dr refers to this time in the transplant journey as 'the honeymoon'. (As I believe I mentioned earlier, he received 2 years' worth of chemo in 6 days!) He showered and dressed every am and we went for multiple daily walks, Ray donning a mask and pulling his 'tree' of IV meds alongside us everywhere he went. We visited the beautiful prayer garden every day. I beat him in Scrabble because he said he didn't want me to go easy on him just because he is sick and getting a transplant! :) He ate 3 good meals each day with no nausea. He was given so many fluids to help flush the chemo quickly out of his body to prevent permanent kidney or bladder damage, that he gained 10 pds the first 2 days! He gained a total of 14 pds after the first 5 days. The kids joked on Sunday that he looked like he was wearing a "fat suit"...they've never seen him heavy so it was quite different to see him so puffy and full of fluids. He then actually lost 8 lbs in one day as they gave him some 'lasix' to help eliminate the fluid buildup. Never knew a person could gain and lose so much weight in one day! Then yesterday early afternoon, Wed, he was given an antibiotic that he is known to have had severe reactions to and he told the nurse this. She said he had to have this specific antibiotic. Within 15 min of taking it orally, he developed a severe stomachache that he could not tolerate without pain meds. He then started spiking a fever and was very nauseous and vomited. He was given additional different antibiotics and the Dr decided not to give him the specific antibiotic that caused his initial distress anymore. Another nurse told us he could have been given that antibiotic via IV and it wouldn't have upset his stomach at all. Another nurse told us it is a derivative of penicillin, which Ray is severely allergic to. I haven't had a chance to verify this via google or otherwise. Either way, he won't get it again and they are saying that is not the cause of his high fever. However, they cannot find the cause of the infection and his fever. So far all his blood cultures have come back negative. They are hoping for more results tomorrow. They explained that they are giving him a 'broad' antibiotic since they don't know the source of infection and cannot give a more specific antibiotic. It is not ideal. His temp is now 103.2 and he has had this since early afternoon Wed. He also has very low blood pressure (80/44 a while ago), and the nurse just told me that if his top number goes down to 70, he goes to ICU, which they have on this same floor. His heart rate is 114, which they are also very concerned about. They just came in and did a chest xray to rule out pneumonia. Will get those results tomorrow am hopefully. He has also developed very severe mouth ulcers and therefore he cannot really eat or talk very easily. He can only drink liquids and very soft foods. They won't let him get up from his bed with his blood pressure so low right now. They believe he is dehydrated, which is also causing the lower blood pressure.
SPECIFIC PRAYER REQUESTS RIGHT NOW: Please pray that the Drs will find out the source of his infection and what is causing his fever, so that they can treat it in the most efficient manner with the best antibiotic and eliminate his high fever. Pray also for his mouth sores to get better and that he is able to do his mouth rinses again to help prevent any new ones. Please also pray for his blood pressure to get back to normal as quickly as possible. PRAY FOR ALL TO GO WELL WITH HIS TRANSPLANT TOMORROW!
DELAYED TRANSPLANT DATE - Ray was supposed to have his transplant today (Thurs), but yesterday we were told it would be delayed one day due to the new stem cells not arriving here from his donor in Canada until tonight. He will receive his transplant at noon tomorrow (Fri), regardless of his fever or any other complication. Everything is well timed and he cannot wait any longer...he has to receive the new stem cells within a specific window of time after receiving the chemo.
I think the hardest thing right now is not knowing what kind of infection he has so that he can be treated in the best manner. He wasn't supposed to get 'sick' from the chemo until 2-4 days after the transplant, so we are a bit surprised that he is so sick already. Having said that, everyone reacts differently and unexpected reactions are the 'norm' here in this tranplant unit....so we really don't have a right to be surprised. Anything can happen. His spirits are good, though, and we are remaining strong in our faith that he is in God's hands and that God is the ultimate Healer and will carry Ray through this, according to His will. It is so hard to stand by and watch a loved one go through this....but we are thankful he is not alone and we know he is in God's hands. No better place to be!
I will update this again tomorrow or Sat with news of the fever, blood pressure, and how his transplant went. Hopefully all will go well and he will start feeling better very soon.
SPECIAL THANKS: Everyone has been so wonderful with the cards and calls and visits. They have been such an encouragement to Ray. Family and friends have helped the kids with meals and laundry and just wonderful heartfelt visits and calls. Ray and I have been so worried about the medical bills and his loss of partial income and he got a call yesterday that he isn't eligible for long term disability due to this being a 'pre-existing' condition, so he was a bit down. However, none of that matters in comparison to his healing and recovery and we know that God will help provide the rest. Your prayers, love, support, and visits and phone calls and texts DO make a difference!! Thanks for taking the time out of your busy schedules! A special thanks to our oldest daughter, Ashley, who has been an amazing support to both me and Ray this last week....helping take such good care of her Dad! She has been here almost everyday and has really helped brighten Rays' spirits. Ray's brother, Billy and dear friend of over 45 yrs, Doug Swanson, drove here from Illinios this week to be with him. What a blessing having them here has been! Our dear friends Mike and Carie and sister in law Betty have also been so supportive and a special encouragement, helping with meals and visits and daily phone calls. So many others as well....too many to name. You know who you are and thank you so much!
Our church family at Temple Baptist has been so wonderful, providing meals and visits and prayers. Ray received an envelope full of prayer cards yesterday from church, which really was a huge blessing to him! We know that MANY churches around the country are also praying faithfully for Ray and we appreciate it more than words can say. (Temple Baptist in TX, Faith Baptist in NH, Berean Baptist in IL, South Haven Baptist in TN, North Valley Baptist in CA to name a few) It really gives us peace and comfort to know so many wonderful churches, Pastors, and church families are lifting Ray up in prayer for his healing!
Another huge source of comfort comes from both Ray and my work. Ray's work and manager has been so supportive; his manager, Matt and several of his co workers visited him this week...really brightening his day! He just loves his job and the people he works with and already misses it. His work and especially his manager and co workers have been so supportive and concerned and just amazing. My work has been equally supportive and caring and it has just made it so much more peaceful and taken that burden off of our shoulders. I have ample time off to spend this critical time supporting Ray and I am so appreciative. I have a wonderfully caring and supportive manager, executive staff, and my own team full of support and thoughts and prayers. It means more than words can say.
Thanks again and may God continue to bless you and yours with healthy families and loved ones. Our health is so often taken for granted and good health is such a blessing.
Check back in a day or two for an update on Ray's transplant and his fever!!
Love to all!
Friday, April 27, 2012
Thursday, 4.26 Update in Hospital for BMT
Family and Friends,
Quick update on Ray's progress so far...DAY 2 in the hospital for his BMT (bone marrow transplant). He was admitted on Wed and immediately received his 2 units of platelets to get them high enough so he could have his port inserted without bleeding excessively! He had the port inserted Wed pm - no anesthesia other than a local. They wouldn't allow me to stay in the room, which was probably a good thing! They ended up having to put the port in his jugular on his neck...not super comfortable for Ray. Every time he turns his head or moves his neck it hurts, but the Dr said that will ease up in the next few days as he gets more used to it. I wish they could have done it in his chest but apparently his jugular vein was 'better' and is used most often. We didn't know that before. At least now he gets his chemo, fluids and antibiotics, and they can draw his blood directly from this 3 pronged port so no more sticking needles and IVs.
Overall, Ray is doing GREAT. Eating well and walking several times a day with me. Dr said walking and exercising is the key to getting out of here after the transplant and critical for his recovery, so Ray's taking that to heart. He slept fairly well but the nurses came in quite a bit for one thing or another, so not great sleep. He started his first chemo today (Thurs) from 7-10am...3 hrs into his port. He slept through some of it, which was nice. He has had no side effects so far of the chemo, other than a fairly severe headache that woke him up at 4am, but that was prior to getting the chemo even. They think it is from the other meds and fluids they are giving him. The staff here have been nothing short of amazing...so efficient but also very nice and caring. They are all just wonderful! Its such a good feeling since this will be 'home' for the next 3 weeks minimum!
Interesting facts we've been told: Ray will be getting as much chemo in 6 days as a 'normal' cancer patient receives over 2 years!! I think I literally almost fainted when the dr told him that Wed. They have to be this aggressive to kill all the good and bad cells in his bone marrow I guess. Its pretty scary to think that he's getting that much chemo. He has to take an anti-seizure drug as well as drink a ton of fluids (and they are flushing his kidneys with a ton of IV fluids in his port non stop) to prevent blood clots in his kidneys...another potential side effect of this particular chemo. So we are praying for NO seizures and NO kidney problems. The Dr said he's doing great and he likely won't feel sick until 2-3 days after his transplant, which is scheduled for next Thurs, May 3. So that means a week from Sat or Sun he should 'hit rock bottom' with his white and red blood counts and platelets basically all down to 0!! He will be very weak and the most at risk for infection, etc.
Also interesting to note....Ray had about 6 blood samples drawn today at very specific times. These were all flown to Seattle tonight via plane, to a specialized lab where they will review his blood and call his Dr by 7am to advise him on the correct dosage for his chemo tomorrow! It is very precise and scientific. They are looking at his blood to see how efficiently his body is processing the chemo and eliminating /fighting it. Based on that, they will 'adjust' his chemo amounts so he doesn't get too much or too little. Apparently this is critical to insure he receives enough to kill all the cells as well as to insure he doesn't suffer seizures or kidney damage. This amazed me to know that there are only a few labs in the US that can review this blood and that it has to be that individually precise that they fly his blood half way across the US to give him the absolute optimal results! Thank God for such progress in fighting this disease!!
We've had several visitors already and it always makes his spirits a bit higher to see a dear friend or family member. Many of you have called to check on him. Don't ever feel like you are bothering me or Ray with your phone calls. If we don't answer, that just means we are out walking or the Dr or nurse is in with him and he can't be interrupted at that time, but we have tried to return all calls as soon as possible.
The address here is 3535 Worth Street, Dallas. Baylor - this building is called The Cancer Hospital, directly across the street from the Sammons Cancer Center. He is on the 7th floor and in Room 704. There is no specific visiting hours; they typically let you come just about anytime. If you want to visit, please do!! We would love to visit!! Our only ASK - if you are feeling sick in any way, please wait until you are 100% recovered! If you even have a sick family member at home that you are in contact with, it is best not to come as you could still be coming down with something and put Ray at risk. With such low white blood cells, he can't fight infection like we all can and especially in a few days' time, it could literally be life threatening for him to even get so much as a common cold. We appreciate your understanding! But if you are healthy...please come!! Ray would love to see you! Especially until next Sat May 5th or so, as he should be feeling pretty good until then. After that, it might be best to call first and make sure he is up to visitors. We aren't sure what to expect exactly, but the nurses have said he will be very weak and sleep alot and not feel well at all...until his new immune system kicks in and starts 'grafting', which means when it starts making new red, white and platelet cells!
A few of the family members here of other BMT patients have stopped Ray and asked him why he's here because he looks so healthy. He doesn't look like he 'belongs' here, they say. That makes him feel good, of course. He is apparently much healthier than most when they even start the process...and that is also a huge part of his overall survival and success with the transplant. The healthier he is going into it, the better his chances for full recovery are...so he's very fortunate to be so fit and overall in good shape right now.
I will update again in a day or two..just to keep you all posted real time. Shouldn't expect much change until after his actual transplant on May 3rd, but I'll send a brief note every few days anyways.
Thank you again for your thoughts and prayers for Ray during this critical time. Again, we covet your prayers and are so thankful for your love and friendship!
Love to all, Teri and Ray
Quick update on Ray's progress so far...DAY 2 in the hospital for his BMT (bone marrow transplant). He was admitted on Wed and immediately received his 2 units of platelets to get them high enough so he could have his port inserted without bleeding excessively! He had the port inserted Wed pm - no anesthesia other than a local. They wouldn't allow me to stay in the room, which was probably a good thing! They ended up having to put the port in his jugular on his neck...not super comfortable for Ray. Every time he turns his head or moves his neck it hurts, but the Dr said that will ease up in the next few days as he gets more used to it. I wish they could have done it in his chest but apparently his jugular vein was 'better' and is used most often. We didn't know that before. At least now he gets his chemo, fluids and antibiotics, and they can draw his blood directly from this 3 pronged port so no more sticking needles and IVs.
Overall, Ray is doing GREAT. Eating well and walking several times a day with me. Dr said walking and exercising is the key to getting out of here after the transplant and critical for his recovery, so Ray's taking that to heart. He slept fairly well but the nurses came in quite a bit for one thing or another, so not great sleep. He started his first chemo today (Thurs) from 7-10am...3 hrs into his port. He slept through some of it, which was nice. He has had no side effects so far of the chemo, other than a fairly severe headache that woke him up at 4am, but that was prior to getting the chemo even. They think it is from the other meds and fluids they are giving him. The staff here have been nothing short of amazing...so efficient but also very nice and caring. They are all just wonderful! Its such a good feeling since this will be 'home' for the next 3 weeks minimum!
Interesting facts we've been told: Ray will be getting as much chemo in 6 days as a 'normal' cancer patient receives over 2 years!! I think I literally almost fainted when the dr told him that Wed. They have to be this aggressive to kill all the good and bad cells in his bone marrow I guess. Its pretty scary to think that he's getting that much chemo. He has to take an anti-seizure drug as well as drink a ton of fluids (and they are flushing his kidneys with a ton of IV fluids in his port non stop) to prevent blood clots in his kidneys...another potential side effect of this particular chemo. So we are praying for NO seizures and NO kidney problems. The Dr said he's doing great and he likely won't feel sick until 2-3 days after his transplant, which is scheduled for next Thurs, May 3. So that means a week from Sat or Sun he should 'hit rock bottom' with his white and red blood counts and platelets basically all down to 0!! He will be very weak and the most at risk for infection, etc.
Also interesting to note....Ray had about 6 blood samples drawn today at very specific times. These were all flown to Seattle tonight via plane, to a specialized lab where they will review his blood and call his Dr by 7am to advise him on the correct dosage for his chemo tomorrow! It is very precise and scientific. They are looking at his blood to see how efficiently his body is processing the chemo and eliminating /fighting it. Based on that, they will 'adjust' his chemo amounts so he doesn't get too much or too little. Apparently this is critical to insure he receives enough to kill all the cells as well as to insure he doesn't suffer seizures or kidney damage. This amazed me to know that there are only a few labs in the US that can review this blood and that it has to be that individually precise that they fly his blood half way across the US to give him the absolute optimal results! Thank God for such progress in fighting this disease!!
We've had several visitors already and it always makes his spirits a bit higher to see a dear friend or family member. Many of you have called to check on him. Don't ever feel like you are bothering me or Ray with your phone calls. If we don't answer, that just means we are out walking or the Dr or nurse is in with him and he can't be interrupted at that time, but we have tried to return all calls as soon as possible.
The address here is 3535 Worth Street, Dallas. Baylor - this building is called The Cancer Hospital, directly across the street from the Sammons Cancer Center. He is on the 7th floor and in Room 704. There is no specific visiting hours; they typically let you come just about anytime. If you want to visit, please do!! We would love to visit!! Our only ASK - if you are feeling sick in any way, please wait until you are 100% recovered! If you even have a sick family member at home that you are in contact with, it is best not to come as you could still be coming down with something and put Ray at risk. With such low white blood cells, he can't fight infection like we all can and especially in a few days' time, it could literally be life threatening for him to even get so much as a common cold. We appreciate your understanding! But if you are healthy...please come!! Ray would love to see you! Especially until next Sat May 5th or so, as he should be feeling pretty good until then. After that, it might be best to call first and make sure he is up to visitors. We aren't sure what to expect exactly, but the nurses have said he will be very weak and sleep alot and not feel well at all...until his new immune system kicks in and starts 'grafting', which means when it starts making new red, white and platelet cells!
A few of the family members here of other BMT patients have stopped Ray and asked him why he's here because he looks so healthy. He doesn't look like he 'belongs' here, they say. That makes him feel good, of course. He is apparently much healthier than most when they even start the process...and that is also a huge part of his overall survival and success with the transplant. The healthier he is going into it, the better his chances for full recovery are...so he's very fortunate to be so fit and overall in good shape right now.
I will update again in a day or two..just to keep you all posted real time. Shouldn't expect much change until after his actual transplant on May 3rd, but I'll send a brief note every few days anyways.
Thank you again for your thoughts and prayers for Ray during this critical time. Again, we covet your prayers and are so thankful for your love and friendship!
Love to all, Teri and Ray
Friday, April 20, 2012
The Big Day is Near....Ray's Transplant!!
Family and Friends,
We had trouble with me accessing this blog to provide aupdate so my apologies for the delay here, but we also just found out the dates for the transplant about 2 weeks ago, so fairly timely!
April 25 - Transplant Check in Date at Baylor Hospital!!
Ray will be going into the hospital next Wed, April 25, where he will start his real journey with the bone marrow transplant process! He will receive a platelet transfusion to help increase his very low platelet count that he's had the last month or so in prep for the week of highly intensive chemo that he will start the following day, Thursday. He will get a port inserted where the chemo will be administered so he doesn't have to bother with IVs while he's in the hospital. He will have 6 days of the chemo, one rest day, and then his actual bone marrow transplant where he will receive the new stem cells from his unrelated donor (56 yr old woman from Canada) on Thurs, May 3!!! This date is a bit 'soft' - it has changed already from May 2 to May 3 and it may even delay until May 4..depending on when his new stem cells actually arrive from Canada. In any case, that stem cell infusion will take only about 3-4 hours max and will be just like an IV transfusion....nothing more painful. That day is considered to be DAY 0 in 'transplant days'. that is what the dr's fondly refer to as Ray's NEW BIRTHDAY!! :) The next day will be considered +1, then +2, and on it goes. He is expected to be in the hospital for 14 days post transplant date...at minimum. We're hoping for 'minimum'!! If there are no complications, he will be released at that time to complete his recovery at home, with of course a ton of dr appts the first 3 months post transplant (ie 3x wk the first month, 2x wk the second month, then 1x wk the third month...again, barring any major complications, infections, etc.).
The Dr has stated that Ray is in GREAT condition to receive his transplant now...the last bone marrow biopsy taken about 3 wks ago showed only 3% blasts (these are the bad, concerning leukemia cells that we worry about and when it hits 20% its considered acute leukemia, which is VERY hard to treat/cure) and no chromosone damage present at all anymore. This is a huge blessing because the chromosome damage is a very high risk factor to the overall transplant success.
Also we just found out that the donor has Ray's exact blood type as well...which is not a requirement but apparently another 'ideal' for the transplant's chances of success! Ray jokes that since he's getting 'female' blood, he is concerned he will have a new passion for shopping!! :) (3 wks ago the Dr did Ray's third and unexpected biopsy as he expressed concern that Ray may have progressed to the acute leukemia stage due to his dangerously low platelets, lower whilte and red blood cells, joint pain, and night sweats he was experiencing - that was quite a scare!) While his counts are dropping some, they are still not anywhere near as low as when he started this whole 'journey' and was first diagnosed. (except his platelets, they are much lower...just part of the disease progression) He hasn't had a chemo treatment in over two months now as they were waiting for the transplant date from the donor and they wanted to skip the month right before the transplant. Then they had to skip this month as his platelets were too low to withstand it (they drop even more from the chemo initally) and also now because its too close to the transplant date, where he'll receive the higher, more intense chemo. The drs can see his blood counts dropping as a result of being off the monthly chemo, but his platelets are just too low to withstand it, so basically the original chemo he was taking to help get him ready for this transplant did its job very well, but now it is no longer effective for him to maintain his blood levels since his platelets are so low. Its ironic because when Ray was first diagnosed, his platelets were the only thing that were in the normal range! Now they are the lowest! Just how this disease progresses apparently.
We are SO thankful that the woman in Canada decided one day to be a bone marrow donor. Without her, Ray would be running out of options as his former chemo treatment is no longer viable for him. Out of the 18 MILLION donors WORLDWIDE, this one dear woman in Canada is the ONLY match for Ray!! What a miracle!! We are so blessed! God's hand is on Ray and we know that He will continue to carry him through this 'journey'. We are hopeful it will be a total cure....Drs have said there is a 65% chance for a total cure with this transplant, so we are encouraged by that. Also, his donor is a 98% match, and the dr said the remaining 2% is 'insignificant' and doesn't decrease his chances for a cure at all. Again, a miracle that he has found this donor. I was reading on the internet the other night and it said that even with all the donors in the US (appx 7-8M in US alone), that still only represents 2% of the US population that are registered bone marrow donors. I think people just don't know about this and what a need there is for more donors. Ray would not have a match at all if he only relied on the US donor bank. If you are so inclined, ask your dr about it and sign up to be a donor...you could very well help save a life like Ray's!! On a side note, our church sponsored a bone marrow drive last fall in support of finding a donor for Ray, and although no one was a match for him, our nephew, Kyle Phemister, was called a few weeks ago and is a preliminary match for a 60 yr old man with leukemia - Kyle has already gone to the dr and had some blood drawn that is being further tested to see if he is a perfect match for this man. That's all that it requires...a simple mouth swab with a Q tip initially, then if you're called, a simple blood test. Kyle is hoping he is a perfect match and can experience the joy of knowing he helped save a life!! We are so thankful that our church's effort, led by Mary Beets, has resulted in a potential life being saved!! What a blessing...another miracle!
I will be staying at the hospital for the most part with Ray the entire 3 weeks he is in....with Ashley and Jordan helping and staying overnight a few times so I can come home and check on the kids every now and then. I'm a bit worried about how it will all work out with me there and the kids here, with homework, dinner, laundry, etc still needing to be done to make a household run smoothly. I'm just trusting that it will all work out. Ashley, Jordan and Savana will be a huge help, I'm sure...and other family and friends we have locally that have offered to help.
There is internet access in Ray's room, so I'm planning on updating this blog every day or every other day with just a brief update on what happened that day and how Ray is doing.
The Dr told us that Ray should basically expect the following during his transplant process:
1. April 25 check in to hospital and receive platelet transfusion, port inserted
2. April 25 - start chemo - for 6 days; Ray won't feel many side effects of chemo during this time until week
2; Dr calls this the "honeymoon" period! (We can think of better places to spend a honeymoon!)
3. May 3 - actual transplant date - receives NEW stem cells - Ray's NEW BIRTHDAY!!
4. May 5-7 - this is the time when Ray will have ZERO blood counts and is at his highest risk for infection,
etc...appx 2-4 days post transplant date! We need your prayers during this time especially!
4. May 4-17 - Ray in hospital while his new bone marrow and new immune system take hold, or 'graft' in
his body. This is also when he will be the sickest in terms of the side effects of his former chemo
treatment. Especially sick for 6-10 days post transplant date, per Dr.
5. May 18 - Ray comes home....just a target date...could change by a few days...or longer if complications.
6. May 18 - ...... - Ray continues to recover, fight any infections, etc....regain energy and strength; will be
home recovering for another 2 months minimum and will hopefully be strong enough to return to work
within 3 months post transplant. Drs have said he may not feel "100%" for anywhere up to a year post
transplant. He cannot eat any restaurant or fast food during these 3 months, nor can he really go
anywhere there are alot of people, for fear of being exposed to germs and getting infections while his
white blood counts are still rebuilding.
So, there you have it...Ray's 'schedule' for the next month during his transplant and beyond! It's been almost a year since Ray was first experiencing symptoms and first getting tests run and diagnosed. Hard to believe. We are so thankful for all your love and support this past year, especially, and we definitely covet your continued prayers as Ray goes through this difficult and trying time, but hopefully with the end result being completely cured!! The Drs have said the one year mark is key....if the disease hasn't returned in one year, it most likely will never return and he can consider himself officially CURED!!
The biggest risk with the transplant, besides infection of any kind, is the Graft vs Host disease (GVHD), where his new bone marrow 'attacks' his organs as not recognizing them as their own. This is similar in theory to any kind of organ transplant where you risk organ rejection, only opposite. Instead of his organs rejecting his new bone marrow, his new bone marrow starts 'rejecting' or attacking his organs. There is medicine to help treat this but we are really praying Ray doesn't get this complication. It can be life threatening or chronic and something he could have to take meds for the rest of his life, or he could not even get it much at all.
There are so many potential side effects that the Drs have told Ray about...too many to list and we don't want to dwell on what 'might' happen but hopefully won't. We just ask that you please continue to keep Ray in your thoughts and prayers as we are trusting in the Lord for His will through all this...but praying that is for Ray to be cured! Ray is in good health (otherwise!), his heart is doing GREAT!!, and he is 'young' in terms of having this disease and going through a transplant procedure....that, coupled with his numbers being in control, very low blasts, no chromosome damange, the donor being a 98% match, and her having Ray's same blood type...all increase Ray's chances for a successful transplant and complete cure! Of course, we know and trust that God is the ultimate healer and Ray's life is in His hands, as are we all.
Thanks for your prayers, your friendship, and your love and concern for Ray. It has and will continue to mean the world to him and us.
Look for daily updates during Ray's hospital stay, starting April 25 or 26th and continuing through his release, hopefully on or around May 18!!
My cell is 214-412-9209 if you need to reach me or get a message to Ray; Ray's cell is 248-850-6602. If he doesn't feel well enough to answer, feel free to call my cell and I'll give you an update, or leave a message for Ray and he'll call you back when he's feeling better.
If you wish to send Ray a card, our new address is below. I would actually love to present Ray with a book filled with all the cards from his friends and family together in one place. If you send a card and have time, please add a note about a funny experience you shared with Ray or a special memory. I thought it would be good medicine for him and help cheer him during his 3 week hospital stay!
541 Bryn Court
Lantana, TX 76226
Love to all! Thank you all again for precious love, support, and friendship!
We had trouble with me accessing this blog to provide aupdate so my apologies for the delay here, but we also just found out the dates for the transplant about 2 weeks ago, so fairly timely!
April 25 - Transplant Check in Date at Baylor Hospital!!
Ray will be going into the hospital next Wed, April 25, where he will start his real journey with the bone marrow transplant process! He will receive a platelet transfusion to help increase his very low platelet count that he's had the last month or so in prep for the week of highly intensive chemo that he will start the following day, Thursday. He will get a port inserted where the chemo will be administered so he doesn't have to bother with IVs while he's in the hospital. He will have 6 days of the chemo, one rest day, and then his actual bone marrow transplant where he will receive the new stem cells from his unrelated donor (56 yr old woman from Canada) on Thurs, May 3!!! This date is a bit 'soft' - it has changed already from May 2 to May 3 and it may even delay until May 4..depending on when his new stem cells actually arrive from Canada. In any case, that stem cell infusion will take only about 3-4 hours max and will be just like an IV transfusion....nothing more painful. That day is considered to be DAY 0 in 'transplant days'. that is what the dr's fondly refer to as Ray's NEW BIRTHDAY!! :) The next day will be considered +1, then +2, and on it goes. He is expected to be in the hospital for 14 days post transplant date...at minimum. We're hoping for 'minimum'!! If there are no complications, he will be released at that time to complete his recovery at home, with of course a ton of dr appts the first 3 months post transplant (ie 3x wk the first month, 2x wk the second month, then 1x wk the third month...again, barring any major complications, infections, etc.).
The Dr has stated that Ray is in GREAT condition to receive his transplant now...the last bone marrow biopsy taken about 3 wks ago showed only 3% blasts (these are the bad, concerning leukemia cells that we worry about and when it hits 20% its considered acute leukemia, which is VERY hard to treat/cure) and no chromosone damage present at all anymore. This is a huge blessing because the chromosome damage is a very high risk factor to the overall transplant success.
Also we just found out that the donor has Ray's exact blood type as well...which is not a requirement but apparently another 'ideal' for the transplant's chances of success! Ray jokes that since he's getting 'female' blood, he is concerned he will have a new passion for shopping!! :) (3 wks ago the Dr did Ray's third and unexpected biopsy as he expressed concern that Ray may have progressed to the acute leukemia stage due to his dangerously low platelets, lower whilte and red blood cells, joint pain, and night sweats he was experiencing - that was quite a scare!) While his counts are dropping some, they are still not anywhere near as low as when he started this whole 'journey' and was first diagnosed. (except his platelets, they are much lower...just part of the disease progression) He hasn't had a chemo treatment in over two months now as they were waiting for the transplant date from the donor and they wanted to skip the month right before the transplant. Then they had to skip this month as his platelets were too low to withstand it (they drop even more from the chemo initally) and also now because its too close to the transplant date, where he'll receive the higher, more intense chemo. The drs can see his blood counts dropping as a result of being off the monthly chemo, but his platelets are just too low to withstand it, so basically the original chemo he was taking to help get him ready for this transplant did its job very well, but now it is no longer effective for him to maintain his blood levels since his platelets are so low. Its ironic because when Ray was first diagnosed, his platelets were the only thing that were in the normal range! Now they are the lowest! Just how this disease progresses apparently.
We are SO thankful that the woman in Canada decided one day to be a bone marrow donor. Without her, Ray would be running out of options as his former chemo treatment is no longer viable for him. Out of the 18 MILLION donors WORLDWIDE, this one dear woman in Canada is the ONLY match for Ray!! What a miracle!! We are so blessed! God's hand is on Ray and we know that He will continue to carry him through this 'journey'. We are hopeful it will be a total cure....Drs have said there is a 65% chance for a total cure with this transplant, so we are encouraged by that. Also, his donor is a 98% match, and the dr said the remaining 2% is 'insignificant' and doesn't decrease his chances for a cure at all. Again, a miracle that he has found this donor. I was reading on the internet the other night and it said that even with all the donors in the US (appx 7-8M in US alone), that still only represents 2% of the US population that are registered bone marrow donors. I think people just don't know about this and what a need there is for more donors. Ray would not have a match at all if he only relied on the US donor bank. If you are so inclined, ask your dr about it and sign up to be a donor...you could very well help save a life like Ray's!! On a side note, our church sponsored a bone marrow drive last fall in support of finding a donor for Ray, and although no one was a match for him, our nephew, Kyle Phemister, was called a few weeks ago and is a preliminary match for a 60 yr old man with leukemia - Kyle has already gone to the dr and had some blood drawn that is being further tested to see if he is a perfect match for this man. That's all that it requires...a simple mouth swab with a Q tip initially, then if you're called, a simple blood test. Kyle is hoping he is a perfect match and can experience the joy of knowing he helped save a life!! We are so thankful that our church's effort, led by Mary Beets, has resulted in a potential life being saved!! What a blessing...another miracle!
I will be staying at the hospital for the most part with Ray the entire 3 weeks he is in....with Ashley and Jordan helping and staying overnight a few times so I can come home and check on the kids every now and then. I'm a bit worried about how it will all work out with me there and the kids here, with homework, dinner, laundry, etc still needing to be done to make a household run smoothly. I'm just trusting that it will all work out. Ashley, Jordan and Savana will be a huge help, I'm sure...and other family and friends we have locally that have offered to help.
There is internet access in Ray's room, so I'm planning on updating this blog every day or every other day with just a brief update on what happened that day and how Ray is doing.
The Dr told us that Ray should basically expect the following during his transplant process:
1. April 25 check in to hospital and receive platelet transfusion, port inserted
2. April 25 - start chemo - for 6 days; Ray won't feel many side effects of chemo during this time until week
2; Dr calls this the "honeymoon" period! (We can think of better places to spend a honeymoon!)
3. May 3 - actual transplant date - receives NEW stem cells - Ray's NEW BIRTHDAY!!
4. May 5-7 - this is the time when Ray will have ZERO blood counts and is at his highest risk for infection,
etc...appx 2-4 days post transplant date! We need your prayers during this time especially!
4. May 4-17 - Ray in hospital while his new bone marrow and new immune system take hold, or 'graft' in
his body. This is also when he will be the sickest in terms of the side effects of his former chemo
treatment. Especially sick for 6-10 days post transplant date, per Dr.
5. May 18 - Ray comes home....just a target date...could change by a few days...or longer if complications.
6. May 18 - ...... - Ray continues to recover, fight any infections, etc....regain energy and strength; will be
home recovering for another 2 months minimum and will hopefully be strong enough to return to work
within 3 months post transplant. Drs have said he may not feel "100%" for anywhere up to a year post
transplant. He cannot eat any restaurant or fast food during these 3 months, nor can he really go
anywhere there are alot of people, for fear of being exposed to germs and getting infections while his
white blood counts are still rebuilding.
So, there you have it...Ray's 'schedule' for the next month during his transplant and beyond! It's been almost a year since Ray was first experiencing symptoms and first getting tests run and diagnosed. Hard to believe. We are so thankful for all your love and support this past year, especially, and we definitely covet your continued prayers as Ray goes through this difficult and trying time, but hopefully with the end result being completely cured!! The Drs have said the one year mark is key....if the disease hasn't returned in one year, it most likely will never return and he can consider himself officially CURED!!
The biggest risk with the transplant, besides infection of any kind, is the Graft vs Host disease (GVHD), where his new bone marrow 'attacks' his organs as not recognizing them as their own. This is similar in theory to any kind of organ transplant where you risk organ rejection, only opposite. Instead of his organs rejecting his new bone marrow, his new bone marrow starts 'rejecting' or attacking his organs. There is medicine to help treat this but we are really praying Ray doesn't get this complication. It can be life threatening or chronic and something he could have to take meds for the rest of his life, or he could not even get it much at all.
There are so many potential side effects that the Drs have told Ray about...too many to list and we don't want to dwell on what 'might' happen but hopefully won't. We just ask that you please continue to keep Ray in your thoughts and prayers as we are trusting in the Lord for His will through all this...but praying that is for Ray to be cured! Ray is in good health (otherwise!), his heart is doing GREAT!!, and he is 'young' in terms of having this disease and going through a transplant procedure....that, coupled with his numbers being in control, very low blasts, no chromosome damange, the donor being a 98% match, and her having Ray's same blood type...all increase Ray's chances for a successful transplant and complete cure! Of course, we know and trust that God is the ultimate healer and Ray's life is in His hands, as are we all.
Thanks for your prayers, your friendship, and your love and concern for Ray. It has and will continue to mean the world to him and us.
Look for daily updates during Ray's hospital stay, starting April 25 or 26th and continuing through his release, hopefully on or around May 18!!
My cell is 214-412-9209 if you need to reach me or get a message to Ray; Ray's cell is 248-850-6602. If he doesn't feel well enough to answer, feel free to call my cell and I'll give you an update, or leave a message for Ray and he'll call you back when he's feeling better.
If you wish to send Ray a card, our new address is below. I would actually love to present Ray with a book filled with all the cards from his friends and family together in one place. If you send a card and have time, please add a note about a funny experience you shared with Ray or a special memory. I thought it would be good medicine for him and help cheer him during his 3 week hospital stay!
541 Bryn Court
Lantana, TX 76226
Love to all! Thank you all again for precious love, support, and friendship!
Wednesday, January 25, 2012
Ray's Update - 1.24.12
Family and Friends -
I can't believe I forgot to post an update since Ray's last chemo/bone marrow biopsy in early December! I truly thought I had updated it before the holidays. My apologies!! I guess with work and the holidays I must have updated it in my dreams! Alot to catch up....here goes...
* Bone Marrow Biopsy Results - The Dr. told us a week ago that Ray has experienced 'unbelievable and remarkable' positive results from the 5 months of chemo to date! GREAT NEWS! Ray's 2nd biopsy on Dec 5 (when I was out of town on business) did reveal that his blasts have reduced from 5% (initial biopsy) to 1%!! PTL! This is GREAT news. The chemo is working 'remarkably well' and has not only increased all his blood counts to the normal range (low normal, but still normal), but decreased these blasts, or leukemia cells. We were originally told in Dec that there was no change in the blasts...not worse, but not better..no change. Ray was a bit discouraged with this, but the Dr. didn't seem alarmed and was just happy they hadn't increased. However, when we got some other conflicting information a few weeks ago, Ray requested copies of all his bone marrow biopsy reports and we saw for ourselves that they had, in fact, decreased significantly to 1%. Guess someone read the report wrong. ?? We met with the bone marrow transplant doctor last week and asked him to verify this for us, which he did, so someone definitely gave us incorrect info originally. Either way, we're very happy with these results. In addition, we just learned last week also that the chromosome damage the first biopsy showed is no longer evident in the second biopsy...so his chromosome damage (missing chromosomes 7 and 20) seems to have resolved or repaired itself with the chemo. The doctor was quite amazed at this specifically....a huge factor in Ray's success for a transplant cure!! This is huge!!
* Bone Marrow Donor and Transplant Update - As you recall, we have been told repeatedly that the ONLY permanent and complete CURE for this disease is the bone marrow transplant The chemo is not a permanent cure. After receiving some 'outdated' information at Ray's appointment last week that there was no suitable donor, we met with the transplant doctor last week as a followup and verified that to the contrary, Ray does, in fact, have a very suitable donor!! At last blog, I had mentioned the guy from Germany that was a 95% match. Turns out the 95% he matches is not 'good enough' so they kept searching. Ray got a call a month or 6 weeks ago that there was a 56 year old woman in Canada that was also a 95% match, but her missing 5% was a much less significant marker and they were very confident in her as an unrelated donor. (Seems the oncologist didn't get the memo!) The bone marrow transplant doctor that we met with last week (and who we really like and have total confidence in) confirmed this Canadian woman is a solid match. Turns out that out of 10 'markers' for your bone marrow, Ray has 2 markers that are quite rare, making the 100% perfect match we were hoping for very improbable of existing without it being a relative. The dr. put it in perspective for us: out of the 15 million people registered on the world wide donor registry, only this ONE single Canadian woman is even a 95% 'close enough' match. This is amazing to think about. 1 in 15 million!! What a miracle!! We are so blessed! So, the dr went on to say that basically, the transplant is 'now or never'. If he's ever going to do it, this is the optimal time...so we are scheduled for the transplant to take place the first week in April...exact date to be determined as they have to confirm with the donor that this week works for her as well. We were told last week that Ray's chances for the transplant to be a permanent cure are appx 65%. I will attempt to explain it as the dr explained to us: There are 3 critical factors that greatly impact Ray's success with the transplant being a permanent cure. 1) Ray's age, 2) the donor's quality of a match, and 3) the % of leukemia blasts, blood counts, and chromosome damage at time of transplant. So, we know that Ray will not get any younger than he is now (we're talking physical age, not mental here! lol ), the donor is a very good 95% match and with the registry adding only 100k new donors/year, the odds of him finding a better match are not too great when only 1 out of 15 Million has matched this well so far, and his blasts are at 1%, all his blood counts are in low normal range, and his chromosome damage is gone...all as a result of the great reaction to the chemo. Why do the transplant then if he's in remission now and all his counts are so good, you may be asking. (We asked the same Q!) While the drs have said Ray is in basic 'remission' right now and back to normal health, they know for a fact that the chemo is NOT a permanent cure and at some point in time, his body will stop responding to the chemo and his numbers will start regressing and his blasts will start increasing again, moving to that acute leukemia stage. No one can predict when that will happen...could be next month, could be 5 years from now......its different for everyone. So if we were to wait and let him enjoy this remission time of good health, we run the risk that his health will be much poorer at time of transplant and of course, he will be older. The other thing in my mind is that 'what if something happened to the donor' and she got ill and could no longer be a viable donor....she is the ONLY one right now...so after much discussion and prayer, Ray feels strongly that he should 'go for it' now. The transplant remains the only chance for a complete and permanent CURE - which is of course what we are praying for!! Ray wanted to finish up a few key events at work in March, as he will be out of work 3-4 months most likely, so he wanted to wait until April. Turns out he has to do some more testing and another bone marrow biopsy as well as get all the insurance paper work in line, so it will take another 6-8 weeks regardless before they will be ready. Please pray for him during the week of Feb 6th, as he will be taking his 6th chemo treatment (Mon - Fri) as well as a battery of additional tests in prep for the transplant. He will be in the hospital all day on Friday, Feb 10, having tests done, including a third bone marrow biopsy! This time he has requested 'conscious sedation', so he doesn't have to experience the extreme pain from the second one in December. I am thankful I will be there with him this time; I do have to travel again on business Tues - Thurs, but will be with him all day Friday for all his tests. So, April it is for the transplant...probably before Easter!! I will update the blog as soon as we get the final date.
* Transplant Process - Again, what will happen with this transplant is that Ray will be in the hospital downtown Dallas at Baylor Transplant Center for appx 3 weeks. Week one is perhaps the roughest on him physically -he will be 'blasted' with very high doses of chemo, designed to kill ALL his bone marrow...the good and the bad...so he will basically have NO immune system, no red or white blood cells, no platelets whatsoever. He will suffer nausea and he will lose his hair at this time. (He's already got his CUBS baseball cap ready to go!) Suffice it to say, he will be pretty sick at this time and he will need all your prayers!! Then he will receive the new bone marrow/stem cells and his new immune system will start the process of building anew in his body. He will take on whatever blood type his new donor has...he will have her immune system. Pretty amazing when you think about it! He will be in the hospital for 2-3 weeks during this time when his immune system is trying to start up and 'take'; he will be taking anti-rejection meds at this time as well and the doctors will be helping his body resist the dreaded 'host vs graft' complication where his new immune system actually can start attacking his own organs. He will also be very susceptible to infection during this time while his white blood cells that fight infection start rebuilding, so another very critical time for Ray. After that first 3-4 weeks, he will get to come home and recover at home until he is strong enough to return to work, hopefully in 3-4 months from the start of the process. During his first month home from the hospital, Ray will need to go back to the hospital 3x/week for tests and monitoring. Then it will taper down to 2x/week, and then 1/week. It is such a major blessing that I work from home and will be able to be here with him full time during his recovery.
So, that's basically it....I promise to update as soon as we get the official date in April. Ray is ready to get this started and on his way to his cure and recovery....but it is definitely very scary and he asks for your continued prayer as he goes through the rest of this journey. God has blessed him so far with the 'remarkable' results from the chemo to get him in such a great state of health and reduced blasts in prep for the transplant. We are trusting in God to keep Ray safe from infection and rejection and 'host vs graft' complications. He is optimistic and anxious to move on with his life, be cured for good and able to look forward to his future again with the kids and grandkids to come!! (No, no announcement here...just looking forward to that stage of his life when the time comes!)
So, while we received some conflicting info originally, it is all sorted out now and we are so happy that one wonderful woman in Canada decided to sign up for the donor registry and now she will have the awesome opportunity to be used by God to help save Ray's life. It doesn't get much better than that!!
PS.....2 quick items....First, wanted to let you all know that our 18 yr old son, Jordan, signed up for and was sworn into the Army last month. He has been talking about this and considering it for a year now and decided now was the right time. He will head out to boot camp (in MO) Aug 14th, after he graduates in June. He has secured a job as an MP - Military Police - which is what he really wants to do and those jobs are apparently hard to come by, so he is very happy. Mom and Dad have very mixed feelings..very proud of him in that he has such a strong desire to serve our country, but a bit worried about what the future will bring with the state of the world today and in the next 8 yrs. (He signed up for 5 yrs active and 3 yrs inactive service..meaning he serves 5 yrs but for the 3 yrs afterwards, the Army reserves the right to call him back into military action due to a state of war or other emergency.) Apparently the MP job requires a longer commitment. We are trying not to worry and just put his life in God's hands, where it has always been, and pray he keeps Jordan safe during this time.
Secondly, and I know this is so trivial in light of what Ray's going through, but I wanted to take this opportunity to share another blessing and thank you for your prayers. I had told you all that I had 'lost' my wedding ring back in Oct and didn't have much hope of finding it after we moved in Nov. Well, I had never really given up hope and prayed that if it was not truly 'lost', that I would find it before the end of the year. And so, on the night before Christmas Eve, I was wrapping presents with my dear friend of 21 years, Carie Parrent, at our new house...when I opened a drawer in my nightstand looking for another pair of scissors or tape, and there was my wedding ring! In virtually plain sight!! It was surreal to say the least. I screamed with joy!! I cannot tell you how many times I looked through that drawer, to no avail. Even one of the twins, Morgan, upon hearing where I found them, said "...but Mom, isn't that the same drawer you and I looked in already?" It's a mystery to me, but I am not going to question God's gift! Thank you for those of you that prayed for me to find my wedding ring...I know it was truly an answer to prayer!
We trust you all had a wonderful and safe holiday season! We had a great holiday and spent a week in Rockford visiting family and friends, staying with Doug and Cindy Swanson. Ray really wanted to spend time with them and his family and friends one last time before the transplant. It was a wonderful and special time!
Our hope and prayer for all of you for this New Year 2012 is to have great blessings of love, faith, happiness and of course, good health!! Don't take your health for granted...which is so easy to do when you have it...but give continued thanks to God for your good health. Every day truly is a gift! We are so thankful for the gifts of true friendships and family that care so much...thank you for all your prayers lifted up for Ray during this time....we have no words to express how much you and your prayers mean to us!
Have a blessed day and week...next update when we have the official date of the transplant!
Love to all,
Teri and Ray
"Faith makes things possible...not easy"!
I can't believe I forgot to post an update since Ray's last chemo/bone marrow biopsy in early December! I truly thought I had updated it before the holidays. My apologies!! I guess with work and the holidays I must have updated it in my dreams! Alot to catch up....here goes...
* Bone Marrow Biopsy Results - The Dr. told us a week ago that Ray has experienced 'unbelievable and remarkable' positive results from the 5 months of chemo to date! GREAT NEWS! Ray's 2nd biopsy on Dec 5 (when I was out of town on business) did reveal that his blasts have reduced from 5% (initial biopsy) to 1%!! PTL! This is GREAT news. The chemo is working 'remarkably well' and has not only increased all his blood counts to the normal range (low normal, but still normal), but decreased these blasts, or leukemia cells. We were originally told in Dec that there was no change in the blasts...not worse, but not better..no change. Ray was a bit discouraged with this, but the Dr. didn't seem alarmed and was just happy they hadn't increased. However, when we got some other conflicting information a few weeks ago, Ray requested copies of all his bone marrow biopsy reports and we saw for ourselves that they had, in fact, decreased significantly to 1%. Guess someone read the report wrong. ?? We met with the bone marrow transplant doctor last week and asked him to verify this for us, which he did, so someone definitely gave us incorrect info originally. Either way, we're very happy with these results. In addition, we just learned last week also that the chromosome damage the first biopsy showed is no longer evident in the second biopsy...so his chromosome damage (missing chromosomes 7 and 20) seems to have resolved or repaired itself with the chemo. The doctor was quite amazed at this specifically....a huge factor in Ray's success for a transplant cure!! This is huge!!
* Bone Marrow Donor and Transplant Update - As you recall, we have been told repeatedly that the ONLY permanent and complete CURE for this disease is the bone marrow transplant The chemo is not a permanent cure. After receiving some 'outdated' information at Ray's appointment last week that there was no suitable donor, we met with the transplant doctor last week as a followup and verified that to the contrary, Ray does, in fact, have a very suitable donor!! At last blog, I had mentioned the guy from Germany that was a 95% match. Turns out the 95% he matches is not 'good enough' so they kept searching. Ray got a call a month or 6 weeks ago that there was a 56 year old woman in Canada that was also a 95% match, but her missing 5% was a much less significant marker and they were very confident in her as an unrelated donor. (Seems the oncologist didn't get the memo!) The bone marrow transplant doctor that we met with last week (and who we really like and have total confidence in) confirmed this Canadian woman is a solid match. Turns out that out of 10 'markers' for your bone marrow, Ray has 2 markers that are quite rare, making the 100% perfect match we were hoping for very improbable of existing without it being a relative. The dr. put it in perspective for us: out of the 15 million people registered on the world wide donor registry, only this ONE single Canadian woman is even a 95% 'close enough' match. This is amazing to think about. 1 in 15 million!! What a miracle!! We are so blessed! So, the dr went on to say that basically, the transplant is 'now or never'. If he's ever going to do it, this is the optimal time...so we are scheduled for the transplant to take place the first week in April...exact date to be determined as they have to confirm with the donor that this week works for her as well. We were told last week that Ray's chances for the transplant to be a permanent cure are appx 65%. I will attempt to explain it as the dr explained to us: There are 3 critical factors that greatly impact Ray's success with the transplant being a permanent cure. 1) Ray's age, 2) the donor's quality of a match, and 3) the % of leukemia blasts, blood counts, and chromosome damage at time of transplant. So, we know that Ray will not get any younger than he is now (we're talking physical age, not mental here! lol ), the donor is a very good 95% match and with the registry adding only 100k new donors/year, the odds of him finding a better match are not too great when only 1 out of 15 Million has matched this well so far, and his blasts are at 1%, all his blood counts are in low normal range, and his chromosome damage is gone...all as a result of the great reaction to the chemo. Why do the transplant then if he's in remission now and all his counts are so good, you may be asking. (We asked the same Q!) While the drs have said Ray is in basic 'remission' right now and back to normal health, they know for a fact that the chemo is NOT a permanent cure and at some point in time, his body will stop responding to the chemo and his numbers will start regressing and his blasts will start increasing again, moving to that acute leukemia stage. No one can predict when that will happen...could be next month, could be 5 years from now......its different for everyone. So if we were to wait and let him enjoy this remission time of good health, we run the risk that his health will be much poorer at time of transplant and of course, he will be older. The other thing in my mind is that 'what if something happened to the donor' and she got ill and could no longer be a viable donor....she is the ONLY one right now...so after much discussion and prayer, Ray feels strongly that he should 'go for it' now. The transplant remains the only chance for a complete and permanent CURE - which is of course what we are praying for!! Ray wanted to finish up a few key events at work in March, as he will be out of work 3-4 months most likely, so he wanted to wait until April. Turns out he has to do some more testing and another bone marrow biopsy as well as get all the insurance paper work in line, so it will take another 6-8 weeks regardless before they will be ready. Please pray for him during the week of Feb 6th, as he will be taking his 6th chemo treatment (Mon - Fri) as well as a battery of additional tests in prep for the transplant. He will be in the hospital all day on Friday, Feb 10, having tests done, including a third bone marrow biopsy! This time he has requested 'conscious sedation', so he doesn't have to experience the extreme pain from the second one in December. I am thankful I will be there with him this time; I do have to travel again on business Tues - Thurs, but will be with him all day Friday for all his tests. So, April it is for the transplant...probably before Easter!! I will update the blog as soon as we get the final date.
* Transplant Process - Again, what will happen with this transplant is that Ray will be in the hospital downtown Dallas at Baylor Transplant Center for appx 3 weeks. Week one is perhaps the roughest on him physically -he will be 'blasted' with very high doses of chemo, designed to kill ALL his bone marrow...the good and the bad...so he will basically have NO immune system, no red or white blood cells, no platelets whatsoever. He will suffer nausea and he will lose his hair at this time. (He's already got his CUBS baseball cap ready to go!) Suffice it to say, he will be pretty sick at this time and he will need all your prayers!! Then he will receive the new bone marrow/stem cells and his new immune system will start the process of building anew in his body. He will take on whatever blood type his new donor has...he will have her immune system. Pretty amazing when you think about it! He will be in the hospital for 2-3 weeks during this time when his immune system is trying to start up and 'take'; he will be taking anti-rejection meds at this time as well and the doctors will be helping his body resist the dreaded 'host vs graft' complication where his new immune system actually can start attacking his own organs. He will also be very susceptible to infection during this time while his white blood cells that fight infection start rebuilding, so another very critical time for Ray. After that first 3-4 weeks, he will get to come home and recover at home until he is strong enough to return to work, hopefully in 3-4 months from the start of the process. During his first month home from the hospital, Ray will need to go back to the hospital 3x/week for tests and monitoring. Then it will taper down to 2x/week, and then 1/week. It is such a major blessing that I work from home and will be able to be here with him full time during his recovery.
So, that's basically it....I promise to update as soon as we get the official date in April. Ray is ready to get this started and on his way to his cure and recovery....but it is definitely very scary and he asks for your continued prayer as he goes through the rest of this journey. God has blessed him so far with the 'remarkable' results from the chemo to get him in such a great state of health and reduced blasts in prep for the transplant. We are trusting in God to keep Ray safe from infection and rejection and 'host vs graft' complications. He is optimistic and anxious to move on with his life, be cured for good and able to look forward to his future again with the kids and grandkids to come!! (No, no announcement here...just looking forward to that stage of his life when the time comes!)
So, while we received some conflicting info originally, it is all sorted out now and we are so happy that one wonderful woman in Canada decided to sign up for the donor registry and now she will have the awesome opportunity to be used by God to help save Ray's life. It doesn't get much better than that!!
PS.....2 quick items....First, wanted to let you all know that our 18 yr old son, Jordan, signed up for and was sworn into the Army last month. He has been talking about this and considering it for a year now and decided now was the right time. He will head out to boot camp (in MO) Aug 14th, after he graduates in June. He has secured a job as an MP - Military Police - which is what he really wants to do and those jobs are apparently hard to come by, so he is very happy. Mom and Dad have very mixed feelings..very proud of him in that he has such a strong desire to serve our country, but a bit worried about what the future will bring with the state of the world today and in the next 8 yrs. (He signed up for 5 yrs active and 3 yrs inactive service..meaning he serves 5 yrs but for the 3 yrs afterwards, the Army reserves the right to call him back into military action due to a state of war or other emergency.) Apparently the MP job requires a longer commitment. We are trying not to worry and just put his life in God's hands, where it has always been, and pray he keeps Jordan safe during this time.
Secondly, and I know this is so trivial in light of what Ray's going through, but I wanted to take this opportunity to share another blessing and thank you for your prayers. I had told you all that I had 'lost' my wedding ring back in Oct and didn't have much hope of finding it after we moved in Nov. Well, I had never really given up hope and prayed that if it was not truly 'lost', that I would find it before the end of the year. And so, on the night before Christmas Eve, I was wrapping presents with my dear friend of 21 years, Carie Parrent, at our new house...when I opened a drawer in my nightstand looking for another pair of scissors or tape, and there was my wedding ring! In virtually plain sight!! It was surreal to say the least. I screamed with joy!! I cannot tell you how many times I looked through that drawer, to no avail. Even one of the twins, Morgan, upon hearing where I found them, said "...but Mom, isn't that the same drawer you and I looked in already?" It's a mystery to me, but I am not going to question God's gift! Thank you for those of you that prayed for me to find my wedding ring...I know it was truly an answer to prayer!
We trust you all had a wonderful and safe holiday season! We had a great holiday and spent a week in Rockford visiting family and friends, staying with Doug and Cindy Swanson. Ray really wanted to spend time with them and his family and friends one last time before the transplant. It was a wonderful and special time!
Our hope and prayer for all of you for this New Year 2012 is to have great blessings of love, faith, happiness and of course, good health!! Don't take your health for granted...which is so easy to do when you have it...but give continued thanks to God for your good health. Every day truly is a gift! We are so thankful for the gifts of true friendships and family that care so much...thank you for all your prayers lifted up for Ray during this time....we have no words to express how much you and your prayers mean to us!
Have a blessed day and week...next update when we have the official date of the transplant!
Love to all,
Teri and Ray
"Faith makes things possible...not easy"!
Thursday, December 8, 2011
Ray's Update - 12/8/11
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
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
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
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