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
Friday, April 27, 2012
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!
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