Dearest Family and Friends,
My apologies for not updating for the past 2 days. I have not been able to find the words to write this update. My heart is breaking. For those of you that are not yet aware, Ray went to be with the Lord Thursday morning (appx 1am). He is singing and rejoicing now with his brother and hero, Gary, whom he has missed so much these last 2 years. He is with his Dad who passed away 9 months ago and his Mom who died 24 years ago. I never in a million years thought that Ray wouldn't be coming home. I guess the Lord had other plans and called him to His home instead. As I've said so many times on this blog, God is in control and we trust in His ultimate will, but we prayed so fervently for His will to be to heal Ray. I know there were literally thousands of you all over the country that took time from your busy lives to pray for Ray through his entire journey, and especially these past 3 weeks during his bone marrow transplant. I hope you don't ever feel that your prayers were in vain. They were not. We felt their power every single day. They strengthened Ray and me and our family every day. God did answer your and my prayers, just not in the way we would have hoped. I can't pretend to understand this right now, but I continue to trust in the Lord and know without a doubt His love and grace will carry each of us through this time. My heart aches for losing the love of my life, but also so much for my 5 children who no longer have an earlthy father. That heartache is like no other. I know my life and my kids' lives will never, ever be the same. Again, God will be with us and bring comfort and help us to find joy in life again. He will also do this through the love of our friends and family. So many of our dear friends have reached out with their love and support already, bringing us comfort during this storm. We are mainly still in shock I think...I tell myself 100 times a day "I can't believe this is happening". It just doesn't seem possible that Ray - full of passion, love, laughter- so full of life - is no longer here. That he won't come walking through the front door again or make us laugh again. It seems impossible to bear. But again, we find comfort in knowing God is in control.
I will write more in a few days with a few more details of what happened the last day in the hospital, but the net is that Ray's liver had failed and they couldn't fnd out why or how to fix it, and ultmately his blood pressure dropped and they coudn't get it back. His heart then failed. The Drs tried to revive him, to no avail. He just opened his eyes wide open and that was it. (We never found out from the doctor what caused the infection or what caused his liver failure. More on that in a later blog after the funeral.) I had all our familly, including our twins and dear friends Mike and Carie, visit with Ray most of the afternoon/evening. We talked to Ray and know he heard us. He was starting to come out of the sedation. It was such a blessing that everyone got to spend time with Ray and he knew everyone was with him. Our 18 yr old son, Jordan, and my nephew Kyle, were with me when this happened, so thankfully I was not alone. This was only the second time someone was going to stay with me overnight (Jordan slept in the chair by me last Friday night - Ray's first night on the ventilator). I think down deep I just knew.
Ray's funeral is planned for Monday, May 21, at 3pm cst at our church. Address below for anyone needing this. We will receive friends at Temple Baptist Church from 2 - 3pm prior to the service. Graveside service to follow at the Town Hall Cemetery in Lewisville, TX. If you are able to attend Ray's service, your presence would be a great source of comfort to our family.
Funeral Service:
Temple Baptist Church
2501 Northshore Blvd.
Flower Mound, TX 75028.
972-874-8700
(This is near the intersection of 2499 (Long Prairie//3040 (Flower Mound Rd)...a few blocks further down 2499 towrds Grapevine.)
Thank you again for all your love, support, encouragement, and prayers during our time of such need. It has meant more to us than words could ever express.
GOD IS (STILL) BIG ENOUGH!
Love,
Teri and kids - Ashley and Zach, Jordan, Savana, Raegan and Morgan
Saturday, May 19, 2012
Wednesday, May 16, 2012
Wed May 16 - CRITICAL 48 HRS FOR RAY
Family and Friends,
PLEASE PRAY FOR RAY!!!! His liver numbers (billirubin) continue to increase daily and the drs have been unsuccessful in either determining the cause or the treatment. I have been told today that the next day or two are critical and he is fast approaching what they termed the 'point of no return' for his liver to be able to recover. You cannot live without a liver and he would not be a transplant consideration. I asked if he could take some of my liver so we wouldn't be taking from the donor program but they still said no. Also he is too weak for that kind of major surgery right now anyways. They are giving him steroids to help his liver right now and it could be that he needs another 2 days for that to work. He may have host vs graft disease, where his new immune system is attacking his liver as not recognizing it as his donor. They treat that with the steroids and it can help. They can't know exactly what's wrong with his liver unless they do a liver biopsy but they said he can't survive that right now due to his bleeding...his blood is not coagulating well so it wouldn't clot. They are still concerned he isn't waking up from the sedation being lifted yesterday morning. They were going to do another CT scan on his brain but canceled it today as they don't think he's stable enough. They may try tomorrow. It was to see if his brain bleeding has gotten any worse and that's why he isn't waking up. It could just be that its taking longer for his sedation medication to leave his system also. He still has alot of fluid that is very slowly being drained...the dialisys had to be stopped this am for a while due to his blood pressure going down. They restarted it but very slowly due to his blood pressure issues. His EEG results came back this am and he has no sign of seizures but his brain activity was 'slower' than normal. Again, could be becasue of the sedation and medications he's on....they have no real way of know if its more serious becuase they cannot do an MRI due to his defibrilator in his chest.
On the bright side, Ray's white blood cells and immune system have really come in strong...he has 17,000 white blood cells today! The dr said these may be elevated due to the injections they were giving him daily to promote this production early...they've stopped these shots now...and tomorrow they may go down a bit and settle in at the normal levels. Normal ranges are 4500 - 11,000. He's above normal now, but he can use them to help fight!!
PLEASE PRAY FOR RAY!! HE NEEDS ALL YOUR PRAYERS NOW MORE THAN EVER. THE NEXT 48 HRS ARE MORE CRITICAL THAN EVER.
GOD IS BIG ENOUGH!
thanks, Teri
PLEASE PRAY FOR RAY!!!! His liver numbers (billirubin) continue to increase daily and the drs have been unsuccessful in either determining the cause or the treatment. I have been told today that the next day or two are critical and he is fast approaching what they termed the 'point of no return' for his liver to be able to recover. You cannot live without a liver and he would not be a transplant consideration. I asked if he could take some of my liver so we wouldn't be taking from the donor program but they still said no. Also he is too weak for that kind of major surgery right now anyways. They are giving him steroids to help his liver right now and it could be that he needs another 2 days for that to work. He may have host vs graft disease, where his new immune system is attacking his liver as not recognizing it as his donor. They treat that with the steroids and it can help. They can't know exactly what's wrong with his liver unless they do a liver biopsy but they said he can't survive that right now due to his bleeding...his blood is not coagulating well so it wouldn't clot. They are still concerned he isn't waking up from the sedation being lifted yesterday morning. They were going to do another CT scan on his brain but canceled it today as they don't think he's stable enough. They may try tomorrow. It was to see if his brain bleeding has gotten any worse and that's why he isn't waking up. It could just be that its taking longer for his sedation medication to leave his system also. He still has alot of fluid that is very slowly being drained...the dialisys had to be stopped this am for a while due to his blood pressure going down. They restarted it but very slowly due to his blood pressure issues. His EEG results came back this am and he has no sign of seizures but his brain activity was 'slower' than normal. Again, could be becasue of the sedation and medications he's on....they have no real way of know if its more serious becuase they cannot do an MRI due to his defibrilator in his chest.
On the bright side, Ray's white blood cells and immune system have really come in strong...he has 17,000 white blood cells today! The dr said these may be elevated due to the injections they were giving him daily to promote this production early...they've stopped these shots now...and tomorrow they may go down a bit and settle in at the normal levels. Normal ranges are 4500 - 11,000. He's above normal now, but he can use them to help fight!!
PLEASE PRAY FOR RAY!! HE NEEDS ALL YOUR PRAYERS NOW MORE THAN EVER. THE NEXT 48 HRS ARE MORE CRITICAL THAN EVER.
GOD IS BIG ENOUGH!
thanks, Teri
Monday, May 14, 2012
Mon eve May 14 - Ray critical - update and still on ventilator
Family and Friends,
Ray is still in ICU and in critical condition. He remains on the ventilator he was placed on Friday evening. He is breathing much better now and getting good oxygen to his organs. He is not struggling for every breath now. That is a blessing. He experienced issues with his blood pressure going down Sat and Sun off and on but it seems to have stabalized today. Below is an update on some specific areas:
1. White Blood Cells/Immune System - BEST MOTHERS DAY GIFT OF ALL - YESTERDAY, SUN, RAY'S WHITE BLOOD CELLS STARTING COMING IN!! PTL!! This is HUGE - we have been waiting for this so that Ray has something to fight this infection with. His white blood cells started coming in 3-5 days earlier than most, with the help of a daily injection to help promote their early production. There was no guarantee this would work, but it did and we are so thankful! This is what the Drs said will help Ray recover the most...his own immune system. God made the human body to be an amazing healer all on our own, but we need our immune system to do it! Ray's numbers increased this am considerably and his white blood count is now at 1.5 (up from .3 yesterday)...normal range is 4.5 - 11. They think by tomorrow it may be 4 or 5, which would put him in the normal range. Please pray his white blood cells continue to come in quickly and that they can help fight this unknown infection and heal his body!
2. Kidneys -The Drs put Ray back on the kidney dialysis this eve to help remove the fluid build up in his body. His kidneys are still functioning well but they cannot keep up with all the fluids they are giving him daily. They thought this was best to get the fluid off quickly. It may take 2-4 days and then should be removed. Ray has between 20-30 pds of extra fluid in his body that has to come off. This is evident in his legs, feet, arms and stomach...but mainly in his legs/feet. It is also surrounding his lungs, which make it difficult for him to breathe and the main reason he's on the ventilator. Once the fluid comes off, his lungs should improve and he can be taken off the vent. This may take several days or til end of week, so please pray for this to happen quickly.
3. Brain - Drs are doing an EEG tonight sometime...they are checking his brain activity to see if he might be having seizures; since he's in an unconscious state, he could have had some small seizures and if so, they need to put him on anti-seizure medicine. The reason they are concerned is that while the lung dr was here on Sat, Rays left bicep was twitching for about 60 sec. It hasn't done it since, but that caught the Dr's eye and he wants to make sure. Ray's main doctor thinks this is an unneccesary test and he is fine in this area. Should receive test results tomorrow.
4. Lungs - Lung dr thinks Ray may have pneumonia again, although he couldn't say for sure. This baffles me a bit (that he can't confirm) but there you have it. He definitely has fluid around his lungs and inside his lungs, but it isn't considered pneumonia until there's infection and up until now they assured me there was no infection/pneumonia (except for two nearly 2 wks ago when he first came to ICU). They have him on every antibiotic known to man, as I've previously stated, so if so, it will be treated with those antibiotics. I'm praying its not pneumonia as that can become very serious when you don't have a full functioning mature immune system. He gets chest xrays daily so they will continue to monitor this closely. They also believe his capillaries are 'leaking', especially in his lungs...this is a 'common' side effect of the chemo/transplant process and they are giving him steroids for a few days to heal this. The down side is that the steroids can suppress his immune system, so just when he's getting it and needs it the most, it may not be as effective as possible while he's taking steroids. Pray they can stop the steroids quickly so his immune system isn't suppressed! He needs it!
5. Liver - the Dr just talked with me tonight and said his main concern of all right now is Ray's liver. This was news to me...no one has expressed much concern about this. I knew Ray's billirubin count was high after the organs were failing a week ago...including the liver. But since then, they has signs his liver was recovering and said the liver is always the last to recover, so they weren't particularly concerned. Now the Dr said his billirubin has been rising since Friday. It is possible he has developed a very serious liver side effect/complication of bone marrow transplants/chemo...only 1% get this, so I'm praying that he didn't get this. Those are such low odds! They will keep monitoring this closely. They should see signs of the number decreasing this week over time....a sign he doesn't have it. There are other reasons why this number could be increasing...one is an infection/blood in the intestine and/or stomach. Ray has had alot of bleeding (last week if you recall I mentioned the blood they pumped out of his stomach last Wed/Thurs when they tried to put the feeding tube in him). The CT scan from last Tues showed a potential ulcer or blockage of some kind (which I just found out today and his own Dr said he hadn't been made aware of that!) and this bleeding could easily explain the high billirubin. If this is the cause, it will resolve itself this week and start going back down. If not, it will continue to rise uncontrollably. There is no cure for this so please pray Ray doesn't have this rare complication and it is only the result of the bleeding. That can be cured. I'm VERY concerned about this based on my conversation with the dr tonight.
That's about it for now. I have no update on the bleeding in his brain. They cannot do an MRI due to his defibrilator in his chest, so they are just waiting this one out and will recheck via CT Scan later. They don't seem too concerned about this as it is a 'common' problem after transplant due to severely low platelets.
On Friday, I should mention that Ray was alert, wiggling his fingers and toes, and told the Drs his full name when asked. We asked Ray if he was in pain, and he said yes; I asked him where his pain was and he very clearly said "everywhere". At least he was responsive and able to communicate, which was a blessing to us since he hadn't been responsive the 2 days before much at all. Therefore, there isn't any concern about his neurological status with the brain bleeds.
I will continue to update as I can. Please also pray for my health as I'm getting a bit of a sore throat tonight and panicking because if I'm sick, I cannot stay here in Ray's room with him. I cannot afford to chance him getting sick from it at this critical time. I cannot think about leaving him now so please pray its only sinus drainage or allergies and not something contagious that would require me to leave. I'm logging off now to try and get some sleep as I think I just need better sleep. Its hard with all the monitors going off every few minutes and the nurses coming in every 10 min it seems. Just like tonight as they're doing an EEG at 1 in the morning! I wanted to give this update real quick before bed as I know many of you read this and are anxious for an update since getting on the ventilator Friday.
Please continue praying fervently for Ray and his complete recovery and cure. He has so much to live for and our 5 children and I need him very much!! We have complete faith in God's control and healing power. We know Ray is such a fighter and is trying to come back to us! Now finally he is getting his new immune system to help him fight!! Our thanks and love to everyone that is praying for Ray - we know there are literally thousands praying for him and it means so very much. Ray has touched so many lives over the years....we know he has so much more to do still!!
Thanks again and God bless!
GOD IS BIG ENOUGH !!
Love, Teri
Ray is still in ICU and in critical condition. He remains on the ventilator he was placed on Friday evening. He is breathing much better now and getting good oxygen to his organs. He is not struggling for every breath now. That is a blessing. He experienced issues with his blood pressure going down Sat and Sun off and on but it seems to have stabalized today. Below is an update on some specific areas:
1. White Blood Cells/Immune System - BEST MOTHERS DAY GIFT OF ALL - YESTERDAY, SUN, RAY'S WHITE BLOOD CELLS STARTING COMING IN!! PTL!! This is HUGE - we have been waiting for this so that Ray has something to fight this infection with. His white blood cells started coming in 3-5 days earlier than most, with the help of a daily injection to help promote their early production. There was no guarantee this would work, but it did and we are so thankful! This is what the Drs said will help Ray recover the most...his own immune system. God made the human body to be an amazing healer all on our own, but we need our immune system to do it! Ray's numbers increased this am considerably and his white blood count is now at 1.5 (up from .3 yesterday)...normal range is 4.5 - 11. They think by tomorrow it may be 4 or 5, which would put him in the normal range. Please pray his white blood cells continue to come in quickly and that they can help fight this unknown infection and heal his body!
2. Kidneys -The Drs put Ray back on the kidney dialysis this eve to help remove the fluid build up in his body. His kidneys are still functioning well but they cannot keep up with all the fluids they are giving him daily. They thought this was best to get the fluid off quickly. It may take 2-4 days and then should be removed. Ray has between 20-30 pds of extra fluid in his body that has to come off. This is evident in his legs, feet, arms and stomach...but mainly in his legs/feet. It is also surrounding his lungs, which make it difficult for him to breathe and the main reason he's on the ventilator. Once the fluid comes off, his lungs should improve and he can be taken off the vent. This may take several days or til end of week, so please pray for this to happen quickly.
3. Brain - Drs are doing an EEG tonight sometime...they are checking his brain activity to see if he might be having seizures; since he's in an unconscious state, he could have had some small seizures and if so, they need to put him on anti-seizure medicine. The reason they are concerned is that while the lung dr was here on Sat, Rays left bicep was twitching for about 60 sec. It hasn't done it since, but that caught the Dr's eye and he wants to make sure. Ray's main doctor thinks this is an unneccesary test and he is fine in this area. Should receive test results tomorrow.
4. Lungs - Lung dr thinks Ray may have pneumonia again, although he couldn't say for sure. This baffles me a bit (that he can't confirm) but there you have it. He definitely has fluid around his lungs and inside his lungs, but it isn't considered pneumonia until there's infection and up until now they assured me there was no infection/pneumonia (except for two nearly 2 wks ago when he first came to ICU). They have him on every antibiotic known to man, as I've previously stated, so if so, it will be treated with those antibiotics. I'm praying its not pneumonia as that can become very serious when you don't have a full functioning mature immune system. He gets chest xrays daily so they will continue to monitor this closely. They also believe his capillaries are 'leaking', especially in his lungs...this is a 'common' side effect of the chemo/transplant process and they are giving him steroids for a few days to heal this. The down side is that the steroids can suppress his immune system, so just when he's getting it and needs it the most, it may not be as effective as possible while he's taking steroids. Pray they can stop the steroids quickly so his immune system isn't suppressed! He needs it!
5. Liver - the Dr just talked with me tonight and said his main concern of all right now is Ray's liver. This was news to me...no one has expressed much concern about this. I knew Ray's billirubin count was high after the organs were failing a week ago...including the liver. But since then, they has signs his liver was recovering and said the liver is always the last to recover, so they weren't particularly concerned. Now the Dr said his billirubin has been rising since Friday. It is possible he has developed a very serious liver side effect/complication of bone marrow transplants/chemo...only 1% get this, so I'm praying that he didn't get this. Those are such low odds! They will keep monitoring this closely. They should see signs of the number decreasing this week over time....a sign he doesn't have it. There are other reasons why this number could be increasing...one is an infection/blood in the intestine and/or stomach. Ray has had alot of bleeding (last week if you recall I mentioned the blood they pumped out of his stomach last Wed/Thurs when they tried to put the feeding tube in him). The CT scan from last Tues showed a potential ulcer or blockage of some kind (which I just found out today and his own Dr said he hadn't been made aware of that!) and this bleeding could easily explain the high billirubin. If this is the cause, it will resolve itself this week and start going back down. If not, it will continue to rise uncontrollably. There is no cure for this so please pray Ray doesn't have this rare complication and it is only the result of the bleeding. That can be cured. I'm VERY concerned about this based on my conversation with the dr tonight.
That's about it for now. I have no update on the bleeding in his brain. They cannot do an MRI due to his defibrilator in his chest, so they are just waiting this one out and will recheck via CT Scan later. They don't seem too concerned about this as it is a 'common' problem after transplant due to severely low platelets.
On Friday, I should mention that Ray was alert, wiggling his fingers and toes, and told the Drs his full name when asked. We asked Ray if he was in pain, and he said yes; I asked him where his pain was and he very clearly said "everywhere". At least he was responsive and able to communicate, which was a blessing to us since he hadn't been responsive the 2 days before much at all. Therefore, there isn't any concern about his neurological status with the brain bleeds.
I will continue to update as I can. Please also pray for my health as I'm getting a bit of a sore throat tonight and panicking because if I'm sick, I cannot stay here in Ray's room with him. I cannot afford to chance him getting sick from it at this critical time. I cannot think about leaving him now so please pray its only sinus drainage or allergies and not something contagious that would require me to leave. I'm logging off now to try and get some sleep as I think I just need better sleep. Its hard with all the monitors going off every few minutes and the nurses coming in every 10 min it seems. Just like tonight as they're doing an EEG at 1 in the morning! I wanted to give this update real quick before bed as I know many of you read this and are anxious for an update since getting on the ventilator Friday.
Please continue praying fervently for Ray and his complete recovery and cure. He has so much to live for and our 5 children and I need him very much!! We have complete faith in God's control and healing power. We know Ray is such a fighter and is trying to come back to us! Now finally he is getting his new immune system to help him fight!! Our thanks and love to everyone that is praying for Ray - we know there are literally thousands praying for him and it means so very much. Ray has touched so many lives over the years....we know he has so much more to do still!!
Thanks again and God bless!
GOD IS BIG ENOUGH !!
Love, Teri
Friday, May 11, 2012
Sat May 12 12:35am - Ray on a ventilator
Family and Friends,
I wanted to give you a quick update that Ray had to be put on a ventilator this evening. Originally the Drs decided against it earlier in the afternoon after looking at some blood test results, but then he took a turn for the worse as his breathing became extremely labored. He was in obvious pain with every breath. Then his blood pressure took a nose dive from 115/75 to 80/40 within minutes. They had to perform an emergency ventillation. His oxygen level in his blood was only at 60% apparently and within minutes of the ventilator, he was at 95%. I know in my mind this was the right decision, but my heart is breaking to see him like this and know how hard he is trying to fight. Perhaps God is using this as a tool to help him recover, much like the dialysis helped his kidneys. It was very scary at the time (I was alone as our oldest daughter, Ashley, had just left), but now I feel a sense of peace as I know he needs this to get better. He still has alot of fluid around his lungs and congestion in his lungs (although no pneumonia) and this will give his kidneys and the drs time to get this fluid drained so he can breathe better on his own. The fluid is the result of the multi-organ failure last weekend and all the fluids they pumped into him to save him.
Everything else remains the same. I will update tomorrow with any changes or just a quick update that all is the same.
Please continue to pray for Ray's recovery and that God will continue to carry him through this and bring him back to us.
GOD IS BIG ENOUGH!!
Thanks.....love to all, Teri
I wanted to give you a quick update that Ray had to be put on a ventilator this evening. Originally the Drs decided against it earlier in the afternoon after looking at some blood test results, but then he took a turn for the worse as his breathing became extremely labored. He was in obvious pain with every breath. Then his blood pressure took a nose dive from 115/75 to 80/40 within minutes. They had to perform an emergency ventillation. His oxygen level in his blood was only at 60% apparently and within minutes of the ventilator, he was at 95%. I know in my mind this was the right decision, but my heart is breaking to see him like this and know how hard he is trying to fight. Perhaps God is using this as a tool to help him recover, much like the dialysis helped his kidneys. It was very scary at the time (I was alone as our oldest daughter, Ashley, had just left), but now I feel a sense of peace as I know he needs this to get better. He still has alot of fluid around his lungs and congestion in his lungs (although no pneumonia) and this will give his kidneys and the drs time to get this fluid drained so he can breathe better on his own. The fluid is the result of the multi-organ failure last weekend and all the fluids they pumped into him to save him.
Everything else remains the same. I will update tomorrow with any changes or just a quick update that all is the same.
Please continue to pray for Ray's recovery and that God will continue to carry him through this and bring him back to us.
GOD IS BIG ENOUGH!!
Thanks.....love to all, Teri
Friday May 11 - Ray still in ICU/Critical but Improving
Family and Friends,
What a week! I can't believe Ray's transplant was one week ago today! This is considered Day 7, with transplant day counting as Day 0. There wasn't much change yesterday from my last post early Wed am.
In summary, Ray is improving, but he's still considered in critical condition. The main concern is that he seems to have plateaued vs continuing to improve daily and specifically, his breathing took a setback. The lung doctor told me this am that he may have to go on a ventillator later today if his breathing doesn't show signs of improvement. They would ventillate him later today for 3-5 days. I'm trying not to panic about that as they've assured me it will only help him recover faster and his body won't have to struggle so hard to breathe. I admit I'm very scared at the thought of this but I'm asking God to give me peace about it if this becomes necessary. Today will be a key day in several areas, so I will post an update either late tonight or early tomorrow.Here's an overall update on his key areas:
1. Kidneys - continue to do well. Just a concern that he has too much sodium in his body and they have to balance that. Giving meds and diuretics and water to combat. One of the fungal antibiotics can cause long term kidney disease or failure but he has no choice; he has to remain on it since they still have no clue what kind of infection he has/had. They continue to watch this; so far no evidence of this.
2. Breathing - setback on Wed night. Had to put him back on the breathing machine and just switched off of it this am to a smaller breathing mask with 50% oxygen. Weaning him off. If he doesn't do well, he will be ventillated today. Please pray his lungs work well in this weaning process and he can avoid ventillation!
3. Heart - GREAT news on this front. Working great. Cardiologist said his heart improvement is nothing short of a miracle. "remarkable'. The leaky valves he had on Sat have almost gone away completely. One is totally recovered and the other is a very small leak and will resolve on own. Beating strong. He had some irregular heartbeats Wed and Thurs and also a few huge spikes in his heart rate Wed, but they've controlled that via meds and he's doing well now.
4. CT Scans/Bleeding - he does have bleeds in the brain, as I mentioned on my last post. They don't know if they are from low platelets or if they may actually be the infection that spread to his brain. This would support a fungal infection. They are treating for both just in case. He is/was also bleeding in his stomach area. They put a feeding tube in him Wed afternoon, but they ended up spending all day Wed and Thurs am pumping blood out of his stomach. Then it stopped suddenly and they have been able to feed him nutrition starting yesterday afternoon. He is tolerating this well. The Dr said the stomach bleeding didn't show up on the CT scan Tues so they feel it is very small bleeds due to low platelets. It seems to have resolved.
5. Alertness - Ray spent most of Wed and Thurs totally 'out of it' - just sleeping basically. Today, however, he opened his eyes and could tell the Drs his name, wiggle his fingers and toes, etc. He told us he hurt 'everywhere' when we asked him where his pain was. At least he can communicate!! That was a bit of a concern when he wasn't responsive for the last 2 days, especially with bleeding in his brain.
That's about it for now. The main prayer request right now is for his breathing to improve,. He has fluid all around his lungs and some internally in his lungs. He is not improving in this key area. I would rather he improve today so he can avoid the ventillator, but if it needs to be done so he can improve, then that is what we will do. Please pray for this specific need!
Thank you all again for your support and love and prayers. Ray is a fighter, as we all know,. He will pull through this, I believe. He is through the worst of it I think and many would not have survived the weekend's sepsis and multi system organ failure. His kidneys got better in 2 days and his heart had a 'miraculous' recovery! These are two huge blessings and we know without a doubt that your prayers made the difference! We have peace knowing Ray is in God's loving hands and He can perform miracles!
Ray should be getting his new white blood cells/immune system in the next few days. This week would have been his worst week even under 'normal' transplant conditions. The Drs are giving him daily shots to boost the production of his new white blood cells to help him fight this infection and recover....so pray they work. They sometimes do not. Once he gets his new immune system working again, he will recover much faster!
Thanks for everything! Keep praying...he's not out of the woods yet by any means. But he is definitely much better than last weekend!
"GOD IS BIG ENOUGH" - We still wear our bracelets...little did we realize how much God would prove this to be true with Ray's transplant journey!
Love to all,
Teri
What a week! I can't believe Ray's transplant was one week ago today! This is considered Day 7, with transplant day counting as Day 0. There wasn't much change yesterday from my last post early Wed am.
In summary, Ray is improving, but he's still considered in critical condition. The main concern is that he seems to have plateaued vs continuing to improve daily and specifically, his breathing took a setback. The lung doctor told me this am that he may have to go on a ventillator later today if his breathing doesn't show signs of improvement. They would ventillate him later today for 3-5 days. I'm trying not to panic about that as they've assured me it will only help him recover faster and his body won't have to struggle so hard to breathe. I admit I'm very scared at the thought of this but I'm asking God to give me peace about it if this becomes necessary. Today will be a key day in several areas, so I will post an update either late tonight or early tomorrow.Here's an overall update on his key areas:
1. Kidneys - continue to do well. Just a concern that he has too much sodium in his body and they have to balance that. Giving meds and diuretics and water to combat. One of the fungal antibiotics can cause long term kidney disease or failure but he has no choice; he has to remain on it since they still have no clue what kind of infection he has/had. They continue to watch this; so far no evidence of this.
2. Breathing - setback on Wed night. Had to put him back on the breathing machine and just switched off of it this am to a smaller breathing mask with 50% oxygen. Weaning him off. If he doesn't do well, he will be ventillated today. Please pray his lungs work well in this weaning process and he can avoid ventillation!
3. Heart - GREAT news on this front. Working great. Cardiologist said his heart improvement is nothing short of a miracle. "remarkable'. The leaky valves he had on Sat have almost gone away completely. One is totally recovered and the other is a very small leak and will resolve on own. Beating strong. He had some irregular heartbeats Wed and Thurs and also a few huge spikes in his heart rate Wed, but they've controlled that via meds and he's doing well now.
4. CT Scans/Bleeding - he does have bleeds in the brain, as I mentioned on my last post. They don't know if they are from low platelets or if they may actually be the infection that spread to his brain. This would support a fungal infection. They are treating for both just in case. He is/was also bleeding in his stomach area. They put a feeding tube in him Wed afternoon, but they ended up spending all day Wed and Thurs am pumping blood out of his stomach. Then it stopped suddenly and they have been able to feed him nutrition starting yesterday afternoon. He is tolerating this well. The Dr said the stomach bleeding didn't show up on the CT scan Tues so they feel it is very small bleeds due to low platelets. It seems to have resolved.
5. Alertness - Ray spent most of Wed and Thurs totally 'out of it' - just sleeping basically. Today, however, he opened his eyes and could tell the Drs his name, wiggle his fingers and toes, etc. He told us he hurt 'everywhere' when we asked him where his pain was. At least he can communicate!! That was a bit of a concern when he wasn't responsive for the last 2 days, especially with bleeding in his brain.
That's about it for now. The main prayer request right now is for his breathing to improve,. He has fluid all around his lungs and some internally in his lungs. He is not improving in this key area. I would rather he improve today so he can avoid the ventillator, but if it needs to be done so he can improve, then that is what we will do. Please pray for this specific need!
Thank you all again for your support and love and prayers. Ray is a fighter, as we all know,. He will pull through this, I believe. He is through the worst of it I think and many would not have survived the weekend's sepsis and multi system organ failure. His kidneys got better in 2 days and his heart had a 'miraculous' recovery! These are two huge blessings and we know without a doubt that your prayers made the difference! We have peace knowing Ray is in God's loving hands and He can perform miracles!
Ray should be getting his new white blood cells/immune system in the next few days. This week would have been his worst week even under 'normal' transplant conditions. The Drs are giving him daily shots to boost the production of his new white blood cells to help him fight this infection and recover....so pray they work. They sometimes do not. Once he gets his new immune system working again, he will recover much faster!
Thanks for everything! Keep praying...he's not out of the woods yet by any means. But he is definitely much better than last weekend!
"GOD IS BIG ENOUGH" - We still wear our bracelets...little did we realize how much God would prove this to be true with Ray's transplant journey!
Love to all,
Teri
Tuesday, May 8, 2012
Tues 5/8 - Ray's Update - Still in ICU but Improving
Family and Friends,
Ray is still in ICU/critical condition, but is definitely showing signs of improving! Today was a much better day. Below are his changes today:
1. Kidneys - Ray actually got off the dialysis machine today! The kidney Dr will reassess tomorrow am, but his kidneys are working again and his creatinine is in the normal range now (after being 8x the normal level 1 day ago!) His Dr told me tonight that this was 'amazing' - his kidneys had failed and they were concerned about permanent damage even...thinking he'd be on the dialysis for 1-2 weeks min, not 2 - 3 days! PTL! Please pray that his kidneys continue to work and improve and he doesn't have to go back on dialysis.
2. Breathing - Not only did Ray not have to go on a ventillator today, but he is actually being weaned off the breathing machine! This am the lung doctor came in to say he too was absolutely amazed with Ray's improvement overnight! They will continue to evaluate this and he is still on oxygen, but getting better. His lungs do have some fluid on them still but definitely improving.
3. His heart rate increased much of the day today (135/min), so please continue to pray that his heart can survive this trauma and infection and continues to strengthen. This needs to go back to normal so its not such a strain on his heart. He also had many irregular heart beats, so please pray that these subside.
4. CT Scans - Ray had CT scans today on his brain, chest (lungs), and abdomen. His abdomen is still a bit extended and he has complained of pain a bit there. He had a bad headache a few nights ago so they did scan the brain. Tonight his Dr. told me he has some bleeding in his brain. He showed me the scans with 4-5 small bleeds. He said this is a result of the low platelets and it also could be the infection that went to his brain, similar to his lesions on his legs and arm. He said right now they are not too concerning, as long as they don't enlarge or increase in quantity. He said they should dissolve on their own, with no after affects. They will keep a close watch on these and of course, I'm pretty worried about this. Please pray for these bleeds to dissolve quickly with no remaining long term effects.
5. Alertness - Ray was more alert today and made sense when he tried to talk. The last few days, he hasn't been awake much and hasn't been very responsive. He actually pulled his breathing mask off this am without taking any of the 4 velcros off...which is something I don't think I could have done myself! He has been trying to get out of bed and has even pulled at his main port....and pulled all the leads off his body. The nurses put these huge white 'mittens' on both hands to prevent this from happening again. I call these his boxing gloves. I sent Ashley a pic and believe she put on FB. However, he actually pulled these 'gloves' off himself. He has been a bit agitated today and restless. They have given him some meds to try and calm him down tonight so he and I both can sleep, but its nearly 1am and so far no change. I can't sleep worrying about him getting out of bed or pulling his main port out....I hope he goes to sleep soon! I also think this is somewhat of a good sign as he is alert and this fight in him is also the same spirit that has gotten him through this horrible experience. So, I'm not complaining too much!
5. Still no official word on the cause of the infection; however, they are leaning heavily toward this being a fungal infection now vs bacterial or viral. They have ramped up the fungal antibiotics...one can cause long term kidney damage so they are closely monitoring this as well. They said the fungal theory also supports the lesions or bleeds in his brain...fungal infections do this. They said fungus is in the air and when someone has no immune system, or failing from chemo, you can get this severe infection that just about causes your body to shut down, which is what happened with Ray. They are still testing and still not 100% sure...please continue to pray that they do find the actual source asap.
That's about it...I'll update again tomorrow night so you know specifics to pray for. We are so thankful for his progress these past few days but the Dr said he is still in critical condition and 'very sick'. We understand but we also know God has carried him through this valley so far and we have every faith He will continue the rest of the journey as well.
God is big enough! (We have worn these black rubber bracelets since Ray's first day here...we came here trusting that God is big enough to get Ray through this..and He is doing just that!
Love to all,
Teri
Ray is still in ICU/critical condition, but is definitely showing signs of improving! Today was a much better day. Below are his changes today:
1. Kidneys - Ray actually got off the dialysis machine today! The kidney Dr will reassess tomorrow am, but his kidneys are working again and his creatinine is in the normal range now (after being 8x the normal level 1 day ago!) His Dr told me tonight that this was 'amazing' - his kidneys had failed and they were concerned about permanent damage even...thinking he'd be on the dialysis for 1-2 weeks min, not 2 - 3 days! PTL! Please pray that his kidneys continue to work and improve and he doesn't have to go back on dialysis.
2. Breathing - Not only did Ray not have to go on a ventillator today, but he is actually being weaned off the breathing machine! This am the lung doctor came in to say he too was absolutely amazed with Ray's improvement overnight! They will continue to evaluate this and he is still on oxygen, but getting better. His lungs do have some fluid on them still but definitely improving.
3. His heart rate increased much of the day today (135/min), so please continue to pray that his heart can survive this trauma and infection and continues to strengthen. This needs to go back to normal so its not such a strain on his heart. He also had many irregular heart beats, so please pray that these subside.
4. CT Scans - Ray had CT scans today on his brain, chest (lungs), and abdomen. His abdomen is still a bit extended and he has complained of pain a bit there. He had a bad headache a few nights ago so they did scan the brain. Tonight his Dr. told me he has some bleeding in his brain. He showed me the scans with 4-5 small bleeds. He said this is a result of the low platelets and it also could be the infection that went to his brain, similar to his lesions on his legs and arm. He said right now they are not too concerning, as long as they don't enlarge or increase in quantity. He said they should dissolve on their own, with no after affects. They will keep a close watch on these and of course, I'm pretty worried about this. Please pray for these bleeds to dissolve quickly with no remaining long term effects.
5. Alertness - Ray was more alert today and made sense when he tried to talk. The last few days, he hasn't been awake much and hasn't been very responsive. He actually pulled his breathing mask off this am without taking any of the 4 velcros off...which is something I don't think I could have done myself! He has been trying to get out of bed and has even pulled at his main port....and pulled all the leads off his body. The nurses put these huge white 'mittens' on both hands to prevent this from happening again. I call these his boxing gloves. I sent Ashley a pic and believe she put on FB. However, he actually pulled these 'gloves' off himself. He has been a bit agitated today and restless. They have given him some meds to try and calm him down tonight so he and I both can sleep, but its nearly 1am and so far no change. I can't sleep worrying about him getting out of bed or pulling his main port out....I hope he goes to sleep soon! I also think this is somewhat of a good sign as he is alert and this fight in him is also the same spirit that has gotten him through this horrible experience. So, I'm not complaining too much!
5. Still no official word on the cause of the infection; however, they are leaning heavily toward this being a fungal infection now vs bacterial or viral. They have ramped up the fungal antibiotics...one can cause long term kidney damage so they are closely monitoring this as well. They said the fungal theory also supports the lesions or bleeds in his brain...fungal infections do this. They said fungus is in the air and when someone has no immune system, or failing from chemo, you can get this severe infection that just about causes your body to shut down, which is what happened with Ray. They are still testing and still not 100% sure...please continue to pray that they do find the actual source asap.
That's about it...I'll update again tomorrow night so you know specifics to pray for. We are so thankful for his progress these past few days but the Dr said he is still in critical condition and 'very sick'. We understand but we also know God has carried him through this valley so far and we have every faith He will continue the rest of the journey as well.
God is big enough! (We have worn these black rubber bracelets since Ray's first day here...we came here trusting that God is big enough to get Ray through this..and He is doing just that!
Love to all,
Teri
Monday, May 7, 2012
Mon 11pm - Ray Update - Still in ICU
Family and Friends,
Without a doubt, the most interesting information I received today is that I asked the Drs what percentage of the transplant patients get a severe infection like this before the actual transplant. The answer? 0!!! Ray is the very FIRST person EVER to get an infection prior to the transplant. (They have 300 transplants/year and have been doing this for over 30 years!) Ray's 'case' is causing quite a stir as they just don't understand what happened. He was doing better than just about anyone at the chemo stage...before he got the infection/fever Wed afternoon. And he is much younger than the 'normal' transplant patient. They are all absolutely dumbfounded and everyone is trying so hard to identify the cause and still today, no answers. No positive cultures on anything!
Today he had the following changes:
1. White blood cell count - Dropped to 0 today, which was expected. He now officially has no immune system. It typically takes 14 days for his new immune system to 'graft'. However, Drs gave Ray medicine to help 'boost' the start of his new immune system. Typically this is given on Day 8 of the transplant vs Ray's Day 3, but they want him to start making new white blood cells asap to help fight this infection (and any new one he could get)! He is at highest risk for infection now, but of course, he currently has an active infection. We are praying he won't get any new/additional infections during the next 2 weeks while he's in this weakened/critical state, so this is a super critical time!
2. Lungs/Breathing - Drs put Ray on a 'breathing machine' early this am. It is a mask that covers his nose and mouth and then hooked up to a machine. It helps force him to take deep breaths. This is an interim step to the ventillator, which the Drs will determine in the morning if they need to do or not. So, he is at risk again for the ventillator. Please pray that Ray's numbers improve overnight so that he can avoid this. If not, they will intubate him in the morning for appx 4-5 days so they can better control his breathing. The problem right now is that he is not taking deep enough breaths to get rid of the carbon dioxide when he exhales, so this builds up in his blood gases. This affects alot of things and is not good. The main reason for this inability to take deep breaths and get rid of the carbon dioxide is he is very lethargic and seems to be sedated, even though they have not given him much sedation or pain medication today. He has barely woken up at all yesterday or today. This is mainly because of all the toxins in his kidneys still that they are trying to eliminate with the dialysis.
3. Blood Pressure - Ray is now experiencing high blood pressure vs Saturday's lows. He is averaging 190/98 or even higher at times. They just gave him a medication to help lower his blood pressure a bit, and already it is now lowered to 113/67, just one hour later! The main reason for the high blood pressure is all the fluids they are giving him to fight the infection and the fact that the kidneys aren't working to eliminate it. This will resolve over time as the dialysis continues to remove fluids and toxins...just a slow process.
4. Biopsy of leg sores - The Dr from the infectious diseases did a biopsy of one of the 'sores' or lesions on his legs. They are hoping this may culture positive with a specific germ and identify the source of the infection so they can better treat it. We should know results in 48 hrs...so Wed afternoon. They believe this is all the same infection.
Please help Ray by continuing to pray for these specific needs during his transplant journey. We are so thankful for such a huge outpouring of love from our family and friends...so many lifting Ray up in prayer and we know without a doubt this is what has made the difference so far with Ray being able to fight this horrible infection and sepsis. We know God intervened Saturday and helped him to start improving and we know God loves Ray even more than we do and will continue to hold him in the palm of his hand. We pray for God's will, but of course we hope that is for Ray to get through this and receive his cure! I know in the toughest of times, God carries us through and we feel that is what God is doing right now...carrying Ray through this valley. My thanks to our dear friends, Shaughn and Kristie Applegate in TN, for reminding me of this truth in text today when I was at one of my weaker moments when they put Ray on the breathing machine. It helped strengthen and comfort me so much!! We have so many wonderful friends that are praying and supporting us and helping with our 4 kids still at home! Ashley has been amazing through all this and such a huge comfort to me. When Ashley walked in the room today, that was the first time Ray really opened his eyes and seemed very alert...I think hearing her voice telling him how much she loved him really made the difference. Also when Arlene told Ray she loved him today from across the room, with his eyes still closed, he simply lifted his hand and put his thumb up ....it was so great to see that he can hear us even when we don't think he can!!
I'm trying to send an update every day so you can see the progress daily and also know what specific prayer needs Ray may have for that day. Thanks for taking time out of your day to read this and keep Ray in your thoughts and prayers!
Love to all,
Teri
Without a doubt, the most interesting information I received today is that I asked the Drs what percentage of the transplant patients get a severe infection like this before the actual transplant. The answer? 0!!! Ray is the very FIRST person EVER to get an infection prior to the transplant. (They have 300 transplants/year and have been doing this for over 30 years!) Ray's 'case' is causing quite a stir as they just don't understand what happened. He was doing better than just about anyone at the chemo stage...before he got the infection/fever Wed afternoon. And he is much younger than the 'normal' transplant patient. They are all absolutely dumbfounded and everyone is trying so hard to identify the cause and still today, no answers. No positive cultures on anything!
Today he had the following changes:
1. White blood cell count - Dropped to 0 today, which was expected. He now officially has no immune system. It typically takes 14 days for his new immune system to 'graft'. However, Drs gave Ray medicine to help 'boost' the start of his new immune system. Typically this is given on Day 8 of the transplant vs Ray's Day 3, but they want him to start making new white blood cells asap to help fight this infection (and any new one he could get)! He is at highest risk for infection now, but of course, he currently has an active infection. We are praying he won't get any new/additional infections during the next 2 weeks while he's in this weakened/critical state, so this is a super critical time!
2. Lungs/Breathing - Drs put Ray on a 'breathing machine' early this am. It is a mask that covers his nose and mouth and then hooked up to a machine. It helps force him to take deep breaths. This is an interim step to the ventillator, which the Drs will determine in the morning if they need to do or not. So, he is at risk again for the ventillator. Please pray that Ray's numbers improve overnight so that he can avoid this. If not, they will intubate him in the morning for appx 4-5 days so they can better control his breathing. The problem right now is that he is not taking deep enough breaths to get rid of the carbon dioxide when he exhales, so this builds up in his blood gases. This affects alot of things and is not good. The main reason for this inability to take deep breaths and get rid of the carbon dioxide is he is very lethargic and seems to be sedated, even though they have not given him much sedation or pain medication today. He has barely woken up at all yesterday or today. This is mainly because of all the toxins in his kidneys still that they are trying to eliminate with the dialysis.
3. Blood Pressure - Ray is now experiencing high blood pressure vs Saturday's lows. He is averaging 190/98 or even higher at times. They just gave him a medication to help lower his blood pressure a bit, and already it is now lowered to 113/67, just one hour later! The main reason for the high blood pressure is all the fluids they are giving him to fight the infection and the fact that the kidneys aren't working to eliminate it. This will resolve over time as the dialysis continues to remove fluids and toxins...just a slow process.
4. Biopsy of leg sores - The Dr from the infectious diseases did a biopsy of one of the 'sores' or lesions on his legs. They are hoping this may culture positive with a specific germ and identify the source of the infection so they can better treat it. We should know results in 48 hrs...so Wed afternoon. They believe this is all the same infection.
Please help Ray by continuing to pray for these specific needs during his transplant journey. We are so thankful for such a huge outpouring of love from our family and friends...so many lifting Ray up in prayer and we know without a doubt this is what has made the difference so far with Ray being able to fight this horrible infection and sepsis. We know God intervened Saturday and helped him to start improving and we know God loves Ray even more than we do and will continue to hold him in the palm of his hand. We pray for God's will, but of course we hope that is for Ray to get through this and receive his cure! I know in the toughest of times, God carries us through and we feel that is what God is doing right now...carrying Ray through this valley. My thanks to our dear friends, Shaughn and Kristie Applegate in TN, for reminding me of this truth in text today when I was at one of my weaker moments when they put Ray on the breathing machine. It helped strengthen and comfort me so much!! We have so many wonderful friends that are praying and supporting us and helping with our 4 kids still at home! Ashley has been amazing through all this and such a huge comfort to me. When Ashley walked in the room today, that was the first time Ray really opened his eyes and seemed very alert...I think hearing her voice telling him how much she loved him really made the difference. Also when Arlene told Ray she loved him today from across the room, with his eyes still closed, he simply lifted his hand and put his thumb up ....it was so great to see that he can hear us even when we don't think he can!!
I'm trying to send an update every day so you can see the progress daily and also know what specific prayer needs Ray may have for that day. Thanks for taking time out of your day to read this and keep Ray in your thoughts and prayers!
Love to all,
Teri
Sunday, May 6, 2012
May 6 Update - RAY IN ICU and CRITICAL
Family and Friends,
Apologies I haven't had a second to update this since Friday's blog when Ray was admitted to ICU with pneumonia. I have been by Ray's side and just wasn't able to leave long enough to update.
Cuurrent Status: Ray is in ICU and in critical condition still. PLEASE CONTINUE TO PRAY FOR HIM!! He does NOT have pneumonia any longer (or maybe never did?) but he does have a serious blood infection the Drs believe is now septic or sepsis. This is life threatening. This means he has a severe infection in his blood. Yesterday, Sat, was a horrible day for Ray and our family. The drs informed us that Ray's kidneys had failed, his liver was failing, his heart was only pumping 35% and now shows evidence of a 'leaky valve' in which one third of his blood is flowing back the wrong direction in his heart, and his lungs were compromised. His heart rate was 114 with fast, shallow breaths that result in his not getting rid of his carbon dioxide when exhaling, so it builds up in his lungs. In addition, Friday night Ray's blood pressure had dropped to 40/14 for much of the night. Saturday they were able to get his pressure back to 60/40 with 3 types of blood pressure medications. Saturday night they started Ray on dialysis for his kidney failure and that seems to be helping rid his system of all the fluids and toxins in his system. At one point Saturday afternoon, they were minutes away from ventillating Ray and completely putting him unconscious for the next 3-4 days. When I got the courage up to ask the question, the Drs told me that Ray could "go either way" and basically had a 50% chance of surviving. The problem remains that the drs still cannot identify the cause/source of his infection, so they are giving him every antibiotic known to man to fight it. However, they need to identify the exact bacteria/germ so they can fight it wth the best antibiotic specific to that bacteria. They are culturing his blood for bacteria, viral, and fungal infections. So far nothing has come back positive. He has about 12 'lesions' on his legs, one on his arm, and one on his face. These lesions were initially thought to be blood clots as they presented very similar to the blood clots and cellulitis he had in Sept. However, now they think they are just part of the overall systemic infection coursing through his entire body and infecting multiple organs. The one on his face is in the same spot Ray thought he got bit by a mosquito or bug Tues night when sitting outside in the prayer garden. Who knows? The doctor from the infection diseases is also consulting and has seen Ray twice and trying to find out what these are and how to best treat. Ray had a 103+ fever Wed afternoon through Sat morning. Again, no known cause. He was struggling with every breath.
The good news is that the Drs now think Ray may be responding to one one or more of the many antibiotics he is receiving, because his fever is gone and his blood pressure is now stable without medication (as of 4pm today!) PTL!! His temp is actually on the low side now (was 93 last night!) and is 96 tonight. The is due to the infection and the dialysis apparently. The Drs have said we may never know what caused this infection but the important thing is to treat it and get rid of it completely. Of course, all this would be very serious for a person with a normal immune system, but with Ray's diminished immune system and very low white blood count (600 today), it puts him at even more risk. In reality, Ray wasn't even supposed to start feeling sick at all from this whoe transplant process until tonight or as late as Tues, when his blood counts would go to 0 from the chemo. So, this infection came as a huge surprise and we need to get it resolved quickly before he has 0 white blood cells...which will likely be tomorrow or Tues at latest.
I must share with you our experience on Sat when the drs made the decision to put Ray on a ventillator. I asked the Drs and nurses to all leave the room so our family could have some private time with Ray before the procedure was done, after which Ray wouldn't be able to talk anymore obviously, or hear us talk to him, as he would be unconscious the entire time. We spent about 30 min telling him how much we loved him, talking about how much we all needed him, talking about what we still wanted to share with him in this life, and praying and asking God to heal him. Then I called Jordan and Savana, who were on their way to the hospital, brother Billy and Doug Swanson who had just left to return to Rockford, IL, and our sister in law, Betty Boehm, who was originally on her way to Colorado and had decided a few hours earlier to return to the hospital for Ray...so that they all could talk with Ray before the ventillator. During this time, they were waiting outside the room for us to finish so they could do the procedure. I asked my family to then give me a few minutes alone with Ray. Through all this, Ray was awake and coherent and talking and totally aware of what was going on and what was about to happen. He had an amazing and unexpected peace and calmness about him throughout it all. He told us all that "if I don't make it, don't think its because Ididn't try and fight as hard as I can to come back to you." Then I opened the door to ask the Dr if they could wait 10 more minutes to give Jordan and Savana time to see Ray, and they told me that they had just received some last minute test results and they changed their mind and weren't going to put him on the ventillator after all at this time. They did explain that they still may have to do this later, but were going to wait for now. They said they were quite surprised to see some of the improvement in his results. Of course, we all know it was the Lord's hand on Ray and we give him all the praise!! It truly is a miracle! If we hadn't taken the time to talk with Ray alone, the ventillator would have already been put in before they got the updated test results!
Ray is not out of the woods yet, so please continue to PRAY, PRAY, PRAY!! He still has all the 'standard' risks associated with the bone marrow transplant to deal with these next 2 weeks while his counts are so low/non existant. Now he has to go through that while he's in a very weakened state with this infection and sepsis. AND he still has to completely heal from the infection and pray that his kidneys, liver, heart and lungs all return to their former full functionality. He will likely remain in ICU the rest of his stay now, but he's receiving excellent care here so that's ok.
I'll try to give a briefer update every day we're here....unless there's a crisis like this weekend where I simply cannot get time away from Ray to do so.
I feel hopeful that Ray will survive this infection now, but again, he is still in critical condition going into the highest risk time of the transplant with no white blood cells to help fight infection, so he needs everyone's prayers! Ray is still so young and has so much life left to live. Please help with your prayers!!
Thanks to all who have come to visit Ray this weekend and to everyone that has helped with our other kids by providing meals, etc. Thanks for your love and support and most of all, thank you all for your prayers! we know it made the difference!!
Love, Teri
Apologies I haven't had a second to update this since Friday's blog when Ray was admitted to ICU with pneumonia. I have been by Ray's side and just wasn't able to leave long enough to update.
Cuurrent Status: Ray is in ICU and in critical condition still. PLEASE CONTINUE TO PRAY FOR HIM!! He does NOT have pneumonia any longer (or maybe never did?) but he does have a serious blood infection the Drs believe is now septic or sepsis. This is life threatening. This means he has a severe infection in his blood. Yesterday, Sat, was a horrible day for Ray and our family. The drs informed us that Ray's kidneys had failed, his liver was failing, his heart was only pumping 35% and now shows evidence of a 'leaky valve' in which one third of his blood is flowing back the wrong direction in his heart, and his lungs were compromised. His heart rate was 114 with fast, shallow breaths that result in his not getting rid of his carbon dioxide when exhaling, so it builds up in his lungs. In addition, Friday night Ray's blood pressure had dropped to 40/14 for much of the night. Saturday they were able to get his pressure back to 60/40 with 3 types of blood pressure medications. Saturday night they started Ray on dialysis for his kidney failure and that seems to be helping rid his system of all the fluids and toxins in his system. At one point Saturday afternoon, they were minutes away from ventillating Ray and completely putting him unconscious for the next 3-4 days. When I got the courage up to ask the question, the Drs told me that Ray could "go either way" and basically had a 50% chance of surviving. The problem remains that the drs still cannot identify the cause/source of his infection, so they are giving him every antibiotic known to man to fight it. However, they need to identify the exact bacteria/germ so they can fight it wth the best antibiotic specific to that bacteria. They are culturing his blood for bacteria, viral, and fungal infections. So far nothing has come back positive. He has about 12 'lesions' on his legs, one on his arm, and one on his face. These lesions were initially thought to be blood clots as they presented very similar to the blood clots and cellulitis he had in Sept. However, now they think they are just part of the overall systemic infection coursing through his entire body and infecting multiple organs. The one on his face is in the same spot Ray thought he got bit by a mosquito or bug Tues night when sitting outside in the prayer garden. Who knows? The doctor from the infection diseases is also consulting and has seen Ray twice and trying to find out what these are and how to best treat. Ray had a 103+ fever Wed afternoon through Sat morning. Again, no known cause. He was struggling with every breath.
The good news is that the Drs now think Ray may be responding to one one or more of the many antibiotics he is receiving, because his fever is gone and his blood pressure is now stable without medication (as of 4pm today!) PTL!! His temp is actually on the low side now (was 93 last night!) and is 96 tonight. The is due to the infection and the dialysis apparently. The Drs have said we may never know what caused this infection but the important thing is to treat it and get rid of it completely. Of course, all this would be very serious for a person with a normal immune system, but with Ray's diminished immune system and very low white blood count (600 today), it puts him at even more risk. In reality, Ray wasn't even supposed to start feeling sick at all from this whoe transplant process until tonight or as late as Tues, when his blood counts would go to 0 from the chemo. So, this infection came as a huge surprise and we need to get it resolved quickly before he has 0 white blood cells...which will likely be tomorrow or Tues at latest.
I must share with you our experience on Sat when the drs made the decision to put Ray on a ventillator. I asked the Drs and nurses to all leave the room so our family could have some private time with Ray before the procedure was done, after which Ray wouldn't be able to talk anymore obviously, or hear us talk to him, as he would be unconscious the entire time. We spent about 30 min telling him how much we loved him, talking about how much we all needed him, talking about what we still wanted to share with him in this life, and praying and asking God to heal him. Then I called Jordan and Savana, who were on their way to the hospital, brother Billy and Doug Swanson who had just left to return to Rockford, IL, and our sister in law, Betty Boehm, who was originally on her way to Colorado and had decided a few hours earlier to return to the hospital for Ray...so that they all could talk with Ray before the ventillator. During this time, they were waiting outside the room for us to finish so they could do the procedure. I asked my family to then give me a few minutes alone with Ray. Through all this, Ray was awake and coherent and talking and totally aware of what was going on and what was about to happen. He had an amazing and unexpected peace and calmness about him throughout it all. He told us all that "if I don't make it, don't think its because Ididn't try and fight as hard as I can to come back to you." Then I opened the door to ask the Dr if they could wait 10 more minutes to give Jordan and Savana time to see Ray, and they told me that they had just received some last minute test results and they changed their mind and weren't going to put him on the ventillator after all at this time. They did explain that they still may have to do this later, but were going to wait for now. They said they were quite surprised to see some of the improvement in his results. Of course, we all know it was the Lord's hand on Ray and we give him all the praise!! It truly is a miracle! If we hadn't taken the time to talk with Ray alone, the ventillator would have already been put in before they got the updated test results!
Ray is not out of the woods yet, so please continue to PRAY, PRAY, PRAY!! He still has all the 'standard' risks associated with the bone marrow transplant to deal with these next 2 weeks while his counts are so low/non existant. Now he has to go through that while he's in a very weakened state with this infection and sepsis. AND he still has to completely heal from the infection and pray that his kidneys, liver, heart and lungs all return to their former full functionality. He will likely remain in ICU the rest of his stay now, but he's receiving excellent care here so that's ok.
I'll try to give a briefer update every day we're here....unless there's a crisis like this weekend where I simply cannot get time away from Ray to do so.
I feel hopeful that Ray will survive this infection now, but again, he is still in critical condition going into the highest risk time of the transplant with no white blood cells to help fight infection, so he needs everyone's prayers! Ray is still so young and has so much life left to live. Please help with your prayers!!
Thanks to all who have come to visit Ray this weekend and to everyone that has helped with our other kids by providing meals, etc. Thanks for your love and support and most of all, thank you all for your prayers! we know it made the difference!!
Love, Teri
Friday, May 4, 2012
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
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
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"!
Subscribe to:
Posts (Atom)