Thursday, January 31, 2013
Thursday, January 24, 2013
No Family Matches
Unfortunately we just received word that Ray's sister was NOT a match either. And we were told that Randy can NOT be a candidate because it's common for people with downs syndrome to develop leukemia in later years & they wouldn't want to inject those type stem cells into Ray. MDS is often referred to as pre-leukemia because if left untreated that's what it usually develops into.
The next step now is to check the National Donor Registry for a match. We've been told that Ray has a 75% chance of finding a match there. Although it's not the ideal way to go because an un-related donor increases the odds of his body possibly rejecting the donated stem cells. But it's the only option we have right now. However there are many success stories of un-related donation transplants & we hope to be among them!
Because so many have offered to be tested to see if they are a match for Ray, I need to share this; Siblings are tested 1st & if no match then they search the World wide Donor Registry. They will NOT under any circumstances allow anyone we know (other than siblings) to be tested. They won't even test our children. Apparently statistics prove that children rarely match. We were told that the only way they'd test a patients child is if 2 brothers married 2 sisters because they would share the same DNA on both sides. Interesting huh? Ray's Uncle Johnny & Uncle Harold actually did marry sisters. That doesn't help us out any tho. It MUST be anonymous.We even know someone here in our park that is already on the Donor Registry & a few others that said they want to be tested to see if a match but rules are rules & the hospitals say absolutely not. So if someone joined the registry, they could be called one day to be someone's stem cell donor but they wouldn't know who it was, nor where they lived, or anything. Ray could actually have a donor from another country but we wouldn't know it! The Donor Registry is almost 10 million strong.
We were told today that there is a possibility that if Ray's white blood cell count doesn't rebound, they may need to start him on some additional medications to help with it & possibly delay next weeks chemo sessions.
There is a lot of sickness beginning to circulate around our park here lately. But folks are pretty good about staying in & away from others so as not to infect them. We certainly appreciate that!
The next step now is to check the National Donor Registry for a match. We've been told that Ray has a 75% chance of finding a match there. Although it's not the ideal way to go because an un-related donor increases the odds of his body possibly rejecting the donated stem cells. But it's the only option we have right now. However there are many success stories of un-related donation transplants & we hope to be among them!
Because so many have offered to be tested to see if they are a match for Ray, I need to share this; Siblings are tested 1st & if no match then they search the World wide Donor Registry. They will NOT under any circumstances allow anyone we know (other than siblings) to be tested. They won't even test our children. Apparently statistics prove that children rarely match. We were told that the only way they'd test a patients child is if 2 brothers married 2 sisters because they would share the same DNA on both sides. Interesting huh? Ray's Uncle Johnny & Uncle Harold actually did marry sisters. That doesn't help us out any tho. It MUST be anonymous.We even know someone here in our park that is already on the Donor Registry & a few others that said they want to be tested to see if a match but rules are rules & the hospitals say absolutely not. So if someone joined the registry, they could be called one day to be someone's stem cell donor but they wouldn't know who it was, nor where they lived, or anything. Ray could actually have a donor from another country but we wouldn't know it! The Donor Registry is almost 10 million strong.
We were told today that there is a possibility that if Ray's white blood cell count doesn't rebound, they may need to start him on some additional medications to help with it & possibly delay next weeks chemo sessions.
There is a lot of sickness beginning to circulate around our park here lately. But folks are pretty good about staying in & away from others so as not to infect them. We certainly appreciate that!
Wednesday, January 23, 2013
Counts Remain Alarmingly Low & Donor Results
Just a quick status update:
Ray went to his weekly blood draw today. His platelet count did not improve - it actually dropped another point (down to 24). But at least it isn't quite low enough to require a blood transfusion yet. That won't occur unless it drops to 20 or below. The normal desired range for platelet counts is between 116 & 329. His white blood count (WBC) that determines his immunity dropped more. A normal WBC count is between 3.4 & 8.7 - Ray's is at 0.6. That's the lowest it's been since all this began. Not good. Previously the lowest WBC count he'd had was 1.3. And right in the middle of one of the worst flu seasons...
We received word that Ray's two brothers did NOT match Ray as a donor. Interestingly though, his two brothers matched each other. We are still awaiting word on whether or not his sister is a match. And if not, we may be looking into whether or not Randy could be a candidate. The verdict is still out on that possibility.
And finally, I am pleased to report that Ray continues to feel fine!
Ray went to his weekly blood draw today. His platelet count did not improve - it actually dropped another point (down to 24). But at least it isn't quite low enough to require a blood transfusion yet. That won't occur unless it drops to 20 or below. The normal desired range for platelet counts is between 116 & 329. His white blood count (WBC) that determines his immunity dropped more. A normal WBC count is between 3.4 & 8.7 - Ray's is at 0.6. That's the lowest it's been since all this began. Not good. Previously the lowest WBC count he'd had was 1.3. And right in the middle of one of the worst flu seasons...
We received word that Ray's two brothers did NOT match Ray as a donor. Interestingly though, his two brothers matched each other. We are still awaiting word on whether or not his sister is a match. And if not, we may be looking into whether or not Randy could be a candidate. The verdict is still out on that possibility.
And finally, I am pleased to report that Ray continues to feel fine!
Saturday, January 19, 2013
Blood Counts & Insurance Scare
Ray's now 2 weeks past the end of his 1st round of chemo & still continues to feel pretty good. He continues to go each week to have his blood checked. This past week's CBC (Complete Blood Count) showed that his platelets had dropped significantly. Normal range is between 116-329 but Ray's is now at 25 (down from 46 last week). We are told that if they drop below 20 he will require blood transfusions. This is not totally unexpected following chemo but we are hoping that they rebound this week.
The past couple of days Ray has had a bout with his stomach bothering him but that seems to be getting better. And no, it's not my cooking!
Three of Ray's siblings have now completed their part of getting tested to determine if any of them are matches for the upcoming stem cell transplant. We are now just waiting to hear from the Moffitt Center on the results.
We sure had a scare this week as several hospital bills began to trickle in. They showed that OUR portion as out-of-pocket coinsurance was $2,500 per every day of chemo! Doing the math told us that the 7-day round equaled $17,500. Thus the 4 rounds planned would equal $70,000! I gotta tell you, I was freaking out. So I got out our insurance brochure & thankfully if I understand it correctly, the maximum 'catastrophic per calendar year' amount we're responsible for is just $5,000. So ok, we'll handle that amount & be ever so thankful for insurance. Ray will turn 65 by the end of this year (Dec 2) & will then become eligible for Medicare which I imagine will then take care of all these numerous co-pays. At least that's our hope. How in the world do folks manage without medical insurance!? Sadly I suspect they do not get the care they need.
On another note, Dad (Ray Sr. age 94) took a tumble on the shuffleboard courts this week. Burgered up his finger & knee pretty good. Took the skin off a finger & it took us 2 days to get the bleeding to finally stop. He's pretty sore from the jar of the fall. Thinking he may have to give up his daily shuffling because his balance is so bad but Ray & I aren't voicing that to him. Rather we are leaving it up to him to decide because he so loves shuffling & it's basically the only exercise he gets & seems to be what keeps him going each day. Our dilemma is do we insist he stop shuffling for his own safety or do we allow him to continue if he so desires because it's one of the few truly enjoyable things he has left in life? Do we toss the dice & hope he doesn't fall again while shuffling? It's tough.
The past couple of days Ray has had a bout with his stomach bothering him but that seems to be getting better. And no, it's not my cooking!
Three of Ray's siblings have now completed their part of getting tested to determine if any of them are matches for the upcoming stem cell transplant. We are now just waiting to hear from the Moffitt Center on the results.
We sure had a scare this week as several hospital bills began to trickle in. They showed that OUR portion as out-of-pocket coinsurance was $2,500 per every day of chemo! Doing the math told us that the 7-day round equaled $17,500. Thus the 4 rounds planned would equal $70,000! I gotta tell you, I was freaking out. So I got out our insurance brochure & thankfully if I understand it correctly, the maximum 'catastrophic per calendar year' amount we're responsible for is just $5,000. So ok, we'll handle that amount & be ever so thankful for insurance. Ray will turn 65 by the end of this year (Dec 2) & will then become eligible for Medicare which I imagine will then take care of all these numerous co-pays. At least that's our hope. How in the world do folks manage without medical insurance!? Sadly I suspect they do not get the care they need.
On another note, Dad (Ray Sr. age 94) took a tumble on the shuffleboard courts this week. Burgered up his finger & knee pretty good. Took the skin off a finger & it took us 2 days to get the bleeding to finally stop. He's pretty sore from the jar of the fall. Thinking he may have to give up his daily shuffling because his balance is so bad but Ray & I aren't voicing that to him. Rather we are leaving it up to him to decide because he so loves shuffling & it's basically the only exercise he gets & seems to be what keeps him going each day. Our dilemma is do we insist he stop shuffling for his own safety or do we allow him to continue if he so desires because it's one of the few truly enjoyable things he has left in life? Do we toss the dice & hope he doesn't fall again while shuffling? It's tough.
Wednesday, January 9, 2013
Chemo Round #1 Completed
I'm happy to be able to report that Ray has successfully completed his 1st round of chemo without any problems! He did NOT suffer any of the usual bad side effects. No nauseousness - yeah! His only complaint is that his stomach is very sore from all the injections. (21 shots over the past 7 days) but that's minor in the scope of things.
So as I sit here composing this blog update I realize that we had been worrying needlessly over what "MIGHT" happen. I've told myself to not do that, but it's very hard when you hear & read so much negative things related to MDS.
Last week the donor test kits were mailed to Ray's three siblings to discover if any of them are a match for his upcoming stem cell transplant. I'm thinking we should know within the next two weeks. We've been told that statistics show that there is a 25% chance of a sibling being a match. And that if none of them are, there's always the world wide Donor Registry to pull from & the chance of a match there is 75%. BUT a sibling is a much better choice because it reduces your chance of your body possibly rejecting the donated stem cells.
Interestingly we learned that our children are NOT donor candidates because statistics show that the chances of them being a match are very low because only 1/2 of their DNA belongs to their father. We were told that the only time they would even consider testing a patients child is if it was a case of two brothers marrying two sisters, in which case they would share DNA on both sides. That makes sense.
The weather here is fantastic. Unseasonably warm. Did I say 'warm'? Try HOT. I finally broke down & flipped on the air conditioning today, despite Ray's dads objections. His idea of perfect room temperature is 80 degrees but with the humidity here, it was becoming unbearable for me & Ray. I set the temp to 78 degrees to at least allow it to run & control the humidity. I'm sorry but if Dad needs to sit in here with his jacket on, then that's what he'll have to do. I can only take off so many clothes!
Anyhow, Ray gets a breather for 3 weeks before his 2nd round of chemo starts. He'll continue to go once per week for blood work to monitor things but that's fine. Unless something changes, I probably won't be updating this blog until then.
So as I sit here composing this blog update I realize that we had been worrying needlessly over what "MIGHT" happen. I've told myself to not do that, but it's very hard when you hear & read so much negative things related to MDS.
Last week the donor test kits were mailed to Ray's three siblings to discover if any of them are a match for his upcoming stem cell transplant. I'm thinking we should know within the next two weeks. We've been told that statistics show that there is a 25% chance of a sibling being a match. And that if none of them are, there's always the world wide Donor Registry to pull from & the chance of a match there is 75%. BUT a sibling is a much better choice because it reduces your chance of your body possibly rejecting the donated stem cells.
Interestingly we learned that our children are NOT donor candidates because statistics show that the chances of them being a match are very low because only 1/2 of their DNA belongs to their father. We were told that the only time they would even consider testing a patients child is if it was a case of two brothers marrying two sisters, in which case they would share DNA on both sides. That makes sense.
The weather here is fantastic. Unseasonably warm. Did I say 'warm'? Try HOT. I finally broke down & flipped on the air conditioning today, despite Ray's dads objections. His idea of perfect room temperature is 80 degrees but with the humidity here, it was becoming unbearable for me & Ray. I set the temp to 78 degrees to at least allow it to run & control the humidity. I'm sorry but if Dad needs to sit in here with his jacket on, then that's what he'll have to do. I can only take off so many clothes!
Anyhow, Ray gets a breather for 3 weeks before his 2nd round of chemo starts. He'll continue to go once per week for blood work to monitor things but that's fine. Unless something changes, I probably won't be updating this blog until then.
Thursday, January 3, 2013
Chemo - Day 2
The second day of treatment didn't go nearly as fast as we thought it would. We felt certain that we'd be in & out of the hospital in slightly under an hour but alas, we were there for 2-1/2 hrs. They don't prepare his injections until he arrives & then he's to receive it within 30 minutes of being placed in the chair. I suppose we just need to learn to be patient & realize nothing rarely happens quickly in a hospital environment.
It's sad to see so many people in different stages of cancer awaiting their chemo treatments. The room is always so full with so many obviously very ill & fighting for their life. If they can sit quietly & wait their turn, then we can too.
Ray had a bit of insomnia last night which is unusual for him but we're not sure it was related to the chemo. He is a bit more tired tonight than usual but no nausea! Yeah! So basically, all is well & we are ever so grateful for that. But I think I must be having sympathy pains cause I feel extra tired tonight too. The man still has more energy than me!
Did I mention that after only 2 days, the nurses there already have Ray's number? As soon as he walked in today, one of the nurses smiled & jokingly told the other nurses nearby to keep an eye on him cause he's a trouble maker! Must have had something to do with him ordering that Busch Light beer yesterday when she asked him what he'd like to drink with his meds!
It's sad to see so many people in different stages of cancer awaiting their chemo treatments. The room is always so full with so many obviously very ill & fighting for their life. If they can sit quietly & wait their turn, then we can too.
Ray had a bit of insomnia last night which is unusual for him but we're not sure it was related to the chemo. He is a bit more tired tonight than usual but no nausea! Yeah! So basically, all is well & we are ever so grateful for that. But I think I must be having sympathy pains cause I feel extra tired tonight too. The man still has more energy than me!
Did I mention that after only 2 days, the nurses there already have Ray's number? As soon as he walked in today, one of the nurses smiled & jokingly told the other nurses nearby to keep an eye on him cause he's a trouble maker! Must have had something to do with him ordering that Busch Light beer yesterday when she asked him what he'd like to drink with his meds!
Wednesday, January 2, 2013
The Chemo Treatments Begin
The day we've been dreading arrived today; the start of Ray's chemo. We spent six long hours at the hospital, mostly waiting. Because it was the 1st day, there were extra steps involved like his blood draw, etc. Out of the 6 hrs there, probably 5 of those hours were spent just sitting in waiting rooms. But I had my novel to read & Ray worked on crossword puzzles. Still, it makes for a long day.
The next six days of chemo should go much more quickly. Basically he will arrive & check in, then he's taken to a room with a nice recliner & TV to watch. They give him a pill 30 minutes prior to each treatment to control any possible nauseousness & then they administer the chemo via 3 injections into his stomach. Then he's free to go home. He also is to take a pill each night to prevent nausea. So as I write this update, it's been six hours since he had the injections & so far, so good - knock on wood!
We can handle this! Because of the frequent trips we must make, we are thankful that the hospital is only 11 miles from our place. In Indiana it would be 90 miles round trip.
The next six days of chemo should go much more quickly. Basically he will arrive & check in, then he's taken to a room with a nice recliner & TV to watch. They give him a pill 30 minutes prior to each treatment to control any possible nauseousness & then they administer the chemo via 3 injections into his stomach. Then he's free to go home. He also is to take a pill each night to prevent nausea. So as I write this update, it's been six hours since he had the injections & so far, so good - knock on wood!
We can handle this! Because of the frequent trips we must make, we are thankful that the hospital is only 11 miles from our place. In Indiana it would be 90 miles round trip.
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