To say that we've been busy lately is putting is mildly. Of course there are the continuing regular trips to the Moffitt Cancer Center but in addition to that we have been busy getting Dad & Randy's things packed & miscellaneous ends tied up in preparation for our passing the "Caregiver Baton" over to Ray's sister Karen.
Our son, Ray III & Ray's older brother Roger brought our car & a few more things from home down to us this past Friday. It was a nice visit. They left back for Indiana early Sunday morning with Randy & Dad's van. Our two youngest grandchildren (ages 6 & 8) arrived very early Sunday morning to spend the day with us. Their mother (ex daughter-in-law) had brought them down during their Spring Break so that they could see their Pap before his transplant. We loved having them here & it was a fun day! Great Grandpa enjoyed them a lot too.
On Tuesday because we had to be at the hospital all day, Jim & Greg Sheesley graciously escorted Dad to the Tampa airport to catch his noon flight home to Indiana. Whatever would we do without family & friends!? Thank you Jim & Greg! Dad is safely back at his Indiana home. I understand he had an interesting person sitting next to him on the flight - someone with nose rings! Ha ha!
So now it's just me & Ray here concentrating solely on tasks we need to get completed before his April 21st Stem Cell Transplant. The past three days consisted of full days at the hospital as Ray was put through numerous tests to ensure he is healthy enough for the transplant. A couple of the tests didn't show the best results & therefore a few more have been added for next week to rule out any unforeseen problems. The lung test detected some small spots so they want to do an infection test to make sure those aren't a problem. The heart scan showed that one of his valves wasn't pumping as well as they would like so we were told that when it's below 50% (his was 45%) they like to do an Echocardiogram just as a precautionary measure to make sure it's ok.
Ray developed a couple of other conditions this week as well. His right eye became very bloodshot & was throbbing somewhat. We then needed to see an eye doctor right away to get that taken care of. Fortunately right across the street from the hospital was the USF Eye Institute so I just walked in after his tests & literally begged them to squeeze him in & they did. It wasn't pink eye but possibly some sort of infection going on so he was put on antibiotic eye drops & now after two days of that, it's much better. Also a few days ago he nicked himself under his nose while shaving & it swelled up & became inflamed & tender so they prescribed some antibiotics to nip that in the bud too. Needless to say, I went right out & purchased an electric razor for him!
The Moffitt Center requires that I have an alternate caregiver for Ray in the event that I would get sick & be unable to be around him. If I even come down with the slightest illness, I would have to keep my distance. Because I won't have any family here to assist me I asked a close neighbor & friend of ours if she would be willing to be my alternate in case that would occur. Thank you so much Donna Holbrook for generously accepting that responsibility! We hope it won't be necessary but one never knows. Donna actually volunteers two days a week at the Moffitt Cancer Center & is very familiar with the things Ray & I find ourselves now facing. She is the perfect choice for us.
My plans now for the next couple of weeks are to get our place cleaned really well because once Ray has his transplant, 100% of my time will be devoted to his care. Plus it's important to get things somewhat sanitized to protect Ray. We've already installed good filters in all the air vents & changed water filters, etc. Working now on deep cleaning inside. (Carpets, walls, windows, blinds, curtains, etc.) It's what I do best so no problem. Ray is still able to help with a lot of it & I make sure he wears a mask & keeps washing his hands. I'm not letting him off the hook quite yet. He's still able & willing to do things. Besides they encourage him to get lots of exercise so I'm just making sure he does by helping me around here! Of course there are some things I will NOT allow him to do such as outside tasks that would expose him to things he must avoid.
Oh! We did learn this week that Ray's donor is a 18 year old young man. Young Blood!! We don't know who he is nor where he's from.
This should bring everyone up to speed on where we're at now. All is well. ~Pam~
Thursday, March 28, 2013
Wednesday, March 20, 2013
1st Blood Transfusion
I suppose it was just a matter of time before Ray needed a blood transfusion. He's been lucky that he hasn't needed one before now. Today his hemoglobin level dropped to the point at which they decided to give him two units of blood. What we thought would only be an hour visit to the hospital for labs turned into a five hour visit, making for a long morning. And to top it off, after waiting that long, he ended up not receiving the transfusion yet!
Apparently they must match the blood they give to your blood so they first test it for antigens. Say what? Antigens are foreign substances which causes the formation of antibodies. An antibody screen is done to test for antibodies that could cause a serious transfusion reaction. If antibodies are identified then the blood bank has to find blood that does not have that antigen in it. Wouldn't you know, they found an antigen in Ray's blood. And unfortunately they did not have any blood in their supply that matched Ray's & therefore had to locate a match outside of the hospital. So because it was going to take a couple more hours or more to have the blood delivered to the hospital PLUS approximately 5 hours to complete the transfusion, we opted to return in the morning. Remember, that's on top of the 5 hours we'd already been there!
Let's hope tomorrow we get it done in a timely manner. And if not, well then we'll try to remain 'patient'. Hmm... I've always wondered why they refer to people seeing a doctor as a "patient" cause often we're not. I think we need a new term. And so it goes...
Followup Thursday 3/21/13:
No problems today. Arrived at hospital at 7:30 AM & Ray received his transfusion and we were back home by 2:00. He's up at the shuffle courts right now shuffling with his Dad! All is well.
Apparently they must match the blood they give to your blood so they first test it for antigens. Say what? Antigens are foreign substances which causes the formation of antibodies. An antibody screen is done to test for antibodies that could cause a serious transfusion reaction. If antibodies are identified then the blood bank has to find blood that does not have that antigen in it. Wouldn't you know, they found an antigen in Ray's blood. And unfortunately they did not have any blood in their supply that matched Ray's & therefore had to locate a match outside of the hospital. So because it was going to take a couple more hours or more to have the blood delivered to the hospital PLUS approximately 5 hours to complete the transfusion, we opted to return in the morning. Remember, that's on top of the 5 hours we'd already been there!
Let's hope tomorrow we get it done in a timely manner. And if not, well then we'll try to remain 'patient'. Hmm... I've always wondered why they refer to people seeing a doctor as a "patient" cause often we're not. I think we need a new term. And so it goes...
Followup Thursday 3/21/13:
No problems today. Arrived at hospital at 7:30 AM & Ray received his transfusion and we were back home by 2:00. He's up at the shuffle courts right now shuffling with his Dad! All is well.
Wednesday, March 13, 2013
Chemo Round 3 Completed
Ray has finished his third round of chemo now in preparation for the transplant. His stomach is very sore & a bright red from those chemo injections but he's handling it well. Usually within a week or two, those issues resolve themselves.
Today he went for his weekly blood lab work & his white blood count (which indicates his ability to fight off infections) revealed that it's now at it's lowest level thus far. He is dangerously neutropenic (an abnormally low level of neutrophils (white blood cells produced in the bone marrow). We have learned so very many medical terms over the past nine months! And to think that this time last year we had never even heard of MDS (Myelodysplastic Syndrome). And now we've heard several stories of people that have known others with this disease. The good news is that there have been a lot of medical advances in that area over the past few years.
We have five weeks now to get ourselves ready for the transplant. I am working on doing a few things around our home here such as some outdoor cleaning & yard work because once the transplant occurs I certainly won't have any spare time to do it then. Ray so wants to help me but he has been told by the doctors that he should avoid any contact with soil, grass clippings, dust, etc. And besides that, his energy level is diminishing. He tires fairly quickly whenever he exerts himself in any way. But it's ok, I'm able to do the things we need done.
After Dad & Randy go back to Indiana, I will need to throughly clean the inside of our place but I figure I can knock that out fairly quickly. Because Ray will be even more susceptible to infection I'll need to ensure the house stays closed up & good air filters installed. I plan to scrub the place from top to bottom. There is a whole list of things that are recommended be done in preparing a place for someone who has gone through a transplant. But hey, I can handle that! It will give me something to do, right? :-)
Anyhow, I'm sure I'll know a lot more about what we'll soon be facing and how to prepare for it when we go through the upcoming educational classes in two weeks. Ready or not...
Today he went for his weekly blood lab work & his white blood count (which indicates his ability to fight off infections) revealed that it's now at it's lowest level thus far. He is dangerously neutropenic (an abnormally low level of neutrophils (white blood cells produced in the bone marrow). We have learned so very many medical terms over the past nine months! And to think that this time last year we had never even heard of MDS (Myelodysplastic Syndrome). And now we've heard several stories of people that have known others with this disease. The good news is that there have been a lot of medical advances in that area over the past few years.
We have five weeks now to get ourselves ready for the transplant. I am working on doing a few things around our home here such as some outdoor cleaning & yard work because once the transplant occurs I certainly won't have any spare time to do it then. Ray so wants to help me but he has been told by the doctors that he should avoid any contact with soil, grass clippings, dust, etc. And besides that, his energy level is diminishing. He tires fairly quickly whenever he exerts himself in any way. But it's ok, I'm able to do the things we need done.
After Dad & Randy go back to Indiana, I will need to throughly clean the inside of our place but I figure I can knock that out fairly quickly. Because Ray will be even more susceptible to infection I'll need to ensure the house stays closed up & good air filters installed. I plan to scrub the place from top to bottom. There is a whole list of things that are recommended be done in preparing a place for someone who has gone through a transplant. But hey, I can handle that! It will give me something to do, right? :-)
Anyhow, I'm sure I'll know a lot more about what we'll soon be facing and how to prepare for it when we go through the upcoming educational classes in two weeks. Ready or not...
Tuesday, March 5, 2013
April 21st - Intense Chemo Begins
Quick update on Ray's transplant schedule;
We just received some clarification on what happens on the April 21st date. This will begin his admission to the hospital when he'll be started on consecutive days of intense chemo to kill ALL of his stem cells. At that point he will begin the 30 days of total hospital isolation. On the 5th day the donor's good stem cells will be put into Ray's blood stream. He will then be monitored closely to make sure his body does not try to reject those donated cells. Ray is ready to "Get-er-Done"!
We just received some clarification on what happens on the April 21st date. This will begin his admission to the hospital when he'll be started on consecutive days of intense chemo to kill ALL of his stem cells. At that point he will begin the 30 days of total hospital isolation. On the 5th day the donor's good stem cells will be put into Ray's blood stream. He will then be monitored closely to make sure his body does not try to reject those donated cells. Ray is ready to "Get-er-Done"!
Friday, March 1, 2013
Transplant Date Set!
Things are happening faster than we expected but that's good news in most respects. We received word today that the donor found is indeed a suitable match & they've scheduled the stem cell transplant for April 21st. Ray will complete his third round of chemo (scheduled to start next week on March 6th). He will then undergo 3 days of pre-transplant work-up March 25-26-27 that consists of ensuring Ray is in adequate physical condition to withstand the transplant. He will go through a multitude of tests checking his heart, lung & kidney functions as well as many various other scans (CT, MRI, PET, etc.)
We will also be attending formal Patient & Caregiver education classes to learn the many vital things we'll need to know on what to expect & the importance of his care. There is certainly a lot to learn & lots of precautions that must be taken. Thinking about it can become somewhat overwhelming.
We do not know who the donor is, nor where he resides. For all we know, he could be from another country. My understanding is that the donor will go through 5 days of receiving a daily injection to stimulate their stem cells. On the 5th day their blood is taken & the stem cells are extracted from that blood. The harvested stem cells are packed on ice & immediately transported to the Moffitt Cancer Center here in Tampa where Ray will receive them. Once placed in his body, those cells should travel to his bone marrow and begin to produce new healthy blood cells.
This past week was somewhat trying occasionally. Ray began having headaches that sometimes hurt quite a bit & he began feeling more tired that usual whenever he exerted himself in any way. What should have been just an hour visit at Wednesday's weekly blood draw at the hospital turned into a 6 hour wait. His white blood cell & platelet counts dropped again & because of the headaches, they decided he should have a CT done of his head to make sure nothing serious was going on. Those tests came back ok. Fortunately the headaches subsided finally. Last night he had an episode with his acid reflux acting up in the middle of the night. The worst he's ever had it & nothing seemed to relieve it. After about an hour or so of him being in a lot of distress, it finally subsided. If was so bad that if it had went on for much longer, I was ready to phone the hospital.
The doctor decided he should return 2 days later (today) for another blood draw. That visit should have only taken an hour too but it turned into a 4 hour wait! We're not sure what took them so long to get the lab results back, but when they finally received the results, it was realized that his potassium was way too high from the previous test on Wednesday, so he needed to head back to the lab for another blood draw to re-test that & of course that was more waiting. The potassium levels ended up being ok too.
Ready or not, it's happening & each day brings the reality of it all closer & closer. Dad & Randy are scheduled to return to Indiana in three weeks. We hope everyone remains in good health during that time & no unexpected train derailments. I had thought we might have a little relaxing "Us" time alone before we had to face the transplant but because it's been moved up a little, there won't be much. So we're savoring each day we have right now, knowing what we'll soon be dealing with.
Stay tuned for more updates to this blog as things develop. I hope to be able to always keep this updated for those that wonder what's happening. It' so much easier than repeating it over & over to so many, plus it ensures everyone receives accurate information first hand.
As ever, ~Pam~
We will also be attending formal Patient & Caregiver education classes to learn the many vital things we'll need to know on what to expect & the importance of his care. There is certainly a lot to learn & lots of precautions that must be taken. Thinking about it can become somewhat overwhelming.
We do not know who the donor is, nor where he resides. For all we know, he could be from another country. My understanding is that the donor will go through 5 days of receiving a daily injection to stimulate their stem cells. On the 5th day their blood is taken & the stem cells are extracted from that blood. The harvested stem cells are packed on ice & immediately transported to the Moffitt Cancer Center here in Tampa where Ray will receive them. Once placed in his body, those cells should travel to his bone marrow and begin to produce new healthy blood cells.
This past week was somewhat trying occasionally. Ray began having headaches that sometimes hurt quite a bit & he began feeling more tired that usual whenever he exerted himself in any way. What should have been just an hour visit at Wednesday's weekly blood draw at the hospital turned into a 6 hour wait. His white blood cell & platelet counts dropped again & because of the headaches, they decided he should have a CT done of his head to make sure nothing serious was going on. Those tests came back ok. Fortunately the headaches subsided finally. Last night he had an episode with his acid reflux acting up in the middle of the night. The worst he's ever had it & nothing seemed to relieve it. After about an hour or so of him being in a lot of distress, it finally subsided. If was so bad that if it had went on for much longer, I was ready to phone the hospital.
The doctor decided he should return 2 days later (today) for another blood draw. That visit should have only taken an hour too but it turned into a 4 hour wait! We're not sure what took them so long to get the lab results back, but when they finally received the results, it was realized that his potassium was way too high from the previous test on Wednesday, so he needed to head back to the lab for another blood draw to re-test that & of course that was more waiting. The potassium levels ended up being ok too.
Ready or not, it's happening & each day brings the reality of it all closer & closer. Dad & Randy are scheduled to return to Indiana in three weeks. We hope everyone remains in good health during that time & no unexpected train derailments. I had thought we might have a little relaxing "Us" time alone before we had to face the transplant but because it's been moved up a little, there won't be much. So we're savoring each day we have right now, knowing what we'll soon be dealing with.
Stay tuned for more updates to this blog as things develop. I hope to be able to always keep this updated for those that wonder what's happening. It' so much easier than repeating it over & over to so many, plus it ensures everyone receives accurate information first hand.
As ever, ~Pam~
Monday, February 18, 2013
Waiting for Donor News
Time is passing & all is well. Ray completed his second round of chemo last week with no problems. He is still feeling fine & continues to get out occasionally & do things within reason. We are trying to be more careful of keeping our distance from folks that appear to be sick. That means there are lots of things we might have normally participated in previously, that we now need to shun away from for Ray's safety.
As I reported in an earlier post, three possible donor matches were found a couple of weeks ago from the National Donor Registry. Of the 3 possibilities, one has a date to get their blood drawn so we should have those results any day now. The second has not responded yet and the 3rd is currently unavailable. We are told that it can take weeks to months to get a donor; it depends on many factors such as being able to contact the donor and the donor’s willingness to proceed. If this donor is not a match (there is a 99% probability he will) they will request more donors.
Now that we are nearing the end of February, we realize it's only a month until we had planned to shuttle Dad & Randy back to Indiana. Our hope was to be able to put Dad on a direct flight home & Ray and I drive the van (with Randy) home for 2 weeks so that we can get all their belongings home, swap vehicles & gather a few more things from our house that we would like to bring back with us since we now must remain here in Florida through the summer to get Ray's stem cell transplant accomplished. However we now realize that would not be a wise thing to do because of the danger involved if Ray would get sick while we're in Indiana. The doctor's have warned us that if he even starts to feel sick or develop a temperature of 100 degrees, they would want him admitted to the hospital & started on IV's to pump antibiotics into him immediately. And we know that should he get sick we definitely want/need to be near the Moffitt Cancer Center & his doctor here in Florida. Therefore, we have now decided to remain here in Florida & NOT attempt the trip home.
Ray's older brother has graciously agreed to drive our car here from Indiana & Dad's van back to Indiana. Dad will fly home as he did last year. Now we are crossing our fingers that Ray's dad remains well during his home stretch here. We don't want a repeat of last year when we had to re-schedule his flight because he landed in the hospital 2 days before he was due to fly home. But at age 94, his health is very fragile.
And so, if all goes well & as planned, Ray will begin his next round of chemo on March 6th. He continues to go weekly for blood work to monitor his levels. We remain positive & hopeful, taking each day as it comes & rejoicing in every day that he wakes & feels good!
As I reported in an earlier post, three possible donor matches were found a couple of weeks ago from the National Donor Registry. Of the 3 possibilities, one has a date to get their blood drawn so we should have those results any day now. The second has not responded yet and the 3rd is currently unavailable. We are told that it can take weeks to months to get a donor; it depends on many factors such as being able to contact the donor and the donor’s willingness to proceed. If this donor is not a match (there is a 99% probability he will) they will request more donors.
Now that we are nearing the end of February, we realize it's only a month until we had planned to shuttle Dad & Randy back to Indiana. Our hope was to be able to put Dad on a direct flight home & Ray and I drive the van (with Randy) home for 2 weeks so that we can get all their belongings home, swap vehicles & gather a few more things from our house that we would like to bring back with us since we now must remain here in Florida through the summer to get Ray's stem cell transplant accomplished. However we now realize that would not be a wise thing to do because of the danger involved if Ray would get sick while we're in Indiana. The doctor's have warned us that if he even starts to feel sick or develop a temperature of 100 degrees, they would want him admitted to the hospital & started on IV's to pump antibiotics into him immediately. And we know that should he get sick we definitely want/need to be near the Moffitt Cancer Center & his doctor here in Florida. Therefore, we have now decided to remain here in Florida & NOT attempt the trip home.
Ray's older brother has graciously agreed to drive our car here from Indiana & Dad's van back to Indiana. Dad will fly home as he did last year. Now we are crossing our fingers that Ray's dad remains well during his home stretch here. We don't want a repeat of last year when we had to re-schedule his flight because he landed in the hospital 2 days before he was due to fly home. But at age 94, his health is very fragile.
And so, if all goes well & as planned, Ray will begin his next round of chemo on March 6th. He continues to go weekly for blood work to monitor his levels. We remain positive & hopeful, taking each day as it comes & rejoicing in every day that he wakes & feels good!
Wednesday, February 6, 2013
Chemo - Round 2 Begins
Thankfully Ray's blood count has improved since last week. YEAH! We spent the whole morning at the hospital today as he began his second round of chemo. His platelets took a really nice hike upwards & are actually nearing normal levels. His white blood cell count took a sweet leap too but still remains at an alarmingly low level. Thus he must continue to be very careful that he doesn't get sick. Even a small fever or scratchy throat, etc. would be cause for him to be admitted to the hospital & immediately be put on an IV to pump him with antibiotics.
The doctor isn't sure if it's the last round of chemo wearing off that has caused his blood count to rebound (because chemo can cause a drop) OR if it's the chemo fighting the disease. Therefore, we may or may not see the counts drop again as he begins this second round. Time will tell.
We have been spending a little more time at home because of our concerns about catching a cold or the flu. Sickness has really been going around here in our park. Ray continues to feel just fine & we both are rejoicing in every good day we have!
The doctor isn't sure if it's the last round of chemo wearing off that has caused his blood count to rebound (because chemo can cause a drop) OR if it's the chemo fighting the disease. Therefore, we may or may not see the counts drop again as he begins this second round. Time will tell.
We have been spending a little more time at home because of our concerns about catching a cold or the flu. Sickness has really been going around here in our park. Ray continues to feel just fine & we both are rejoicing in every good day we have!
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.
Saturday, December 22, 2012
A Successful Dental Visit
We were a little nervous about having Ray's tooth extracted yesterday because of him being on Coumadin, thus the possibility of excessive bleeding, but it went well. I think that more than anything, it played on our nerves. By the time we returned home we were both done in. Ray slept most of the afternoon away & even I layed down for a couple of hours too.
So the holiday season is now upon us & we will enjoy the next week to it's fullest while Ray still feels okay. The weather here turned cool last night, dipping down into the 30's but we both thought it felt wonderful to snuggle under the blankets. With the wind blowing we could almost imagine that we were in Indiana & it was snowing! Not that we would really want to be in cold & snow, but it did make it seem more like the Christmas season we've always been used to. Our temperatures are expected to warm back up into the upper 70's in just a couple of days, so we'll not fret over a couple of nights of cold.
Next week we only have to go to the Moffitt Center once, just for a quick lab visit to check Ray's coumadin level. We'll not think about what follows the next week. At least not for now...
To all our family & friends, we wish you all a very Merry Christmas!
Love, ~Ray & Pam~
So the holiday season is now upon us & we will enjoy the next week to it's fullest while Ray still feels okay. The weather here turned cool last night, dipping down into the 30's but we both thought it felt wonderful to snuggle under the blankets. With the wind blowing we could almost imagine that we were in Indiana & it was snowing! Not that we would really want to be in cold & snow, but it did make it seem more like the Christmas season we've always been used to. Our temperatures are expected to warm back up into the upper 70's in just a couple of days, so we'll not fret over a couple of nights of cold.
Next week we only have to go to the Moffitt Center once, just for a quick lab visit to check Ray's coumadin level. We'll not think about what follows the next week. At least not for now...
To all our family & friends, we wish you all a very Merry Christmas!
Love, ~Ray & Pam~
Thursday, December 20, 2012
Preparing for the Transplant
Things seem to be happening really fast now. The transplant doctor instructed Ray to get a complete dental exam to ensure he has a healthy mouth in readiness for the transplant. So he made the appointment since he was due for a regular check-up & cleaning anyhow. Because of his low immune system they had to give him antibiotics to preform the cleaning. No cavities but he has some sort of pocket in his gums between two teeth that he's had for years. The dentist was concerned that it could get infected & he reported as such to the Moffitt Center. To make a long story short, he is getting a tooth pulled tomorrow morning to ensure that when he has the transplant, there is no possibility of an unexpected infection causing serious problems. Because he's on coumadin, he'll remain longer than normal to make sure there's no serious bleeding.
The bad news is that the bone marrow biopsy did reveal that Ray has that nasty 17p chromosome & therefore the doctors feel it's important that he begin getting ready for a transplant because the 17p will cause the MDS to progress much quicker than if he didn't have it. And the past several months blood tests have indeed proven that to be the case. In ten days beginning on January 2nd. he will begin receiving chemo injections. Round 1 will consist of 7 straight days of injections followed by 3 weeks off. They want him to receive at least four rounds of it which will take him up to May or June at which time they anticipate possibly doing the stem cell transplant if we can locate a donor match & all goes well.
We've been told that after beginning the chemo injections, at 1st we can anticipate his platelets to drop even more & at that point he'll probably need blood transfusions. But then they should rebound after a while. Also they prescribed anti-nausea meds for him to take as he undergoes the chemo because nausea is a very common side effect. That actually sounds like the worst part of it. Sadly we learned that when he begins the chemo, he must stop the coumadin & go full time on the shots we hate so much. But that's ok. We're learning to accept them as part of the "it is what it is" thing.
And so we plan to have the transplant here in Florida so we can be near the hospital which is vital. Dad & Randy will remain here until April, barring no unforeseen problems that would make it impossible for us to continue to be their caregivers over the next 3 months. We'll continue to make lots of trips on a weekly basis to the Moffitt Ctr but that's not so bad since it's only 10 to 15 min from us. They tell us Ray will probably start feeling tired but we hope they're wrong about that. After all, he's surprised them so far with his energy level remaining just fine! We do realize however that he must cut back on some activities (like playing tennis) because he can't risk any injuries.
This just all seems so surreal to us cause Ray feels perfectly fine right now. And even tho we are making lots of trips to the Moffitt Ctr for testing & consultations, & the shots & now getting that tooth pulled, etc. it hasn't really hit us yet. But something tells me that on January 2nd when he begins the chemo, it will...
The bad news is that the bone marrow biopsy did reveal that Ray has that nasty 17p chromosome & therefore the doctors feel it's important that he begin getting ready for a transplant because the 17p will cause the MDS to progress much quicker than if he didn't have it. And the past several months blood tests have indeed proven that to be the case. In ten days beginning on January 2nd. he will begin receiving chemo injections. Round 1 will consist of 7 straight days of injections followed by 3 weeks off. They want him to receive at least four rounds of it which will take him up to May or June at which time they anticipate possibly doing the stem cell transplant if we can locate a donor match & all goes well.
We've been told that after beginning the chemo injections, at 1st we can anticipate his platelets to drop even more & at that point he'll probably need blood transfusions. But then they should rebound after a while. Also they prescribed anti-nausea meds for him to take as he undergoes the chemo because nausea is a very common side effect. That actually sounds like the worst part of it. Sadly we learned that when he begins the chemo, he must stop the coumadin & go full time on the shots we hate so much. But that's ok. We're learning to accept them as part of the "it is what it is" thing.
And so we plan to have the transplant here in Florida so we can be near the hospital which is vital. Dad & Randy will remain here until April, barring no unforeseen problems that would make it impossible for us to continue to be their caregivers over the next 3 months. We'll continue to make lots of trips on a weekly basis to the Moffitt Ctr but that's not so bad since it's only 10 to 15 min from us. They tell us Ray will probably start feeling tired but we hope they're wrong about that. After all, he's surprised them so far with his energy level remaining just fine! We do realize however that he must cut back on some activities (like playing tennis) because he can't risk any injuries.
This just all seems so surreal to us cause Ray feels perfectly fine right now. And even tho we are making lots of trips to the Moffitt Ctr for testing & consultations, & the shots & now getting that tooth pulled, etc. it hasn't really hit us yet. But something tells me that on January 2nd when he begins the chemo, it will...
Wednesday, December 12, 2012
Learning About Stem Cell Transplants
Ray & I spent most of today at the Moffitt Cancer Center
consulting with several doctors, mostly about what we may be facing when we
begin the transplant procedure. We still do not know yet if we need to pursue
it sooner than later but the transplant specialists feel it’s wise to begin the
search for a donor match NOW, even if we don’t do the transplant for another 2
or 3 years. Basically, if the last bone marrow results show that he has that
nasty 17p chromosome, then they want to do the transplant as soon as possible
because its presence will cause the MDS to progress much faster. If it’s no
longer present, they may just continue to treat Ray with medication to try
& hold his condition in check for as long as possible. And of course, we must find a donor match.
One of the biggest decisions we must make is where to have
the transplant. There are pros & cons either way we go. We realize that
family support may be extremely important & we can best receive that back
home in Indiana. However, we really feel that the Moffitt Center & their doctors
are by far the better choice with their extensive knowledge in the transplant
department. We learned that they average over 400 transplants per year. Another
important factor is that we are only 15 minutes from their facility. In Indiana
we are an hour away from the hospital that we’d need to use & from the
sounds of it, there is going to be considerable travel involved, not to mention
a lot of time spent in the hospital. He was told he should not mow grass
anymore, nor work out in the yard because of his inability to fend off bacteria
spores outside that could make him sick. If we remain here in Florida, that
temptation wouldn’t be facing him. And I could probably keep him more in the
isolation from people & things that they tell us will be needed. In Indiana
the temptation to socialize, etc. would be very hard for him. If you know Ray
at all, you know he’s the social butterfly in this family!
Either way we go, we know that we will no longer be able to
be the caregivers for Dad (Ray Sr.) or Randy. At this point we cannot worry or
concern ourselves with that because Ray must take top billing. Ray’s other
siblings will be forced to take over that responsibility & I’m sure they
will.
The doctor’s today did not sugar coat anything & what we
learned about the transplant process did not paint a pretty picture. In fact,
truthfully I found it very frightening. But it is what it is & we’ll face
it head on & deal with it. Ray remains positive & is ready to
getter-done! Me? Not so much. If they would tell us that we need to do it next
month, I tend to want to put it off until the 1st of April, thus
allowing us at least a couple of months of enjoying some quality time together
here in sunny Florida before we begin the process. Then Dad & Randy could
remain here with us too, and just return home to Indiana in April as
usual. But who knows, we may or may not
find a suitable match quickly anyhow. We just don’t know.
And so, here are some of the things we learned today;
Ø
A sibling donor is the absolute best option
because by sharing the same parents, the chance of your body rejecting their
stem cells is decreased. Each sibling has a 25% chance of being a match.
Ø
If there is no sibling match, the donor registry
is an option, there is a 75% chance of a match but the chances of your body rejecting
their cells is somewhat higher than if a sibling.
Ø
As I questioned the statistics I was told that
the MDS re-occurs in 25% of transplant patients within the 1st year.
And that 55% get the MDS back between 1 & 5 years, but that means that 45%
will remain cured! Also that there is a
10% chance of death from surgery complications.
Ø
The transplant process will require that Ray be
hospitalized for a week of chemo just prior to the transplant followed by 3
weeks at a minimum afterwards, at which time he’d be in isolation. For 3 months
following that, he would be required to visit the hospital twice a week.
Ø
He would be monitored very closely thereafter
& would probably be on anti-rejection drugs for at least 2 years &
would continue to have periodic bone marrow biopsies for the rest of his life.
Ø
Instead of a transplant, they can attempt to delay
the need for a transplant by treating his MDS with medications for awhile, but
even those only work for so long. If we’re lucky they’d work for 3 years,
probably followed by another 3 years of chemo to try & control the leukemia
that he would probably progress to. Another reason to possibly delay the
transplant is to avoid the risk of death from the surgery itself! Yes, these
are the words the doctor spoke. Like I said, they don’t sugar-coat it.
Ø
We were told that I would be the caregiver &
to fully expect it to be a 24/7 responsibility. I can handle that & willing
so. But I also can NOT get sick because if I do, they would insist I not be
around Ray until I was over any illness I might have. We were told to expect
many many days of Ray feeling pretty bad throughout the transplant procedures
but that there would be a lot of hospital support for us, both physically &
emotionally.
So what’s next? We meet next week (Dec. 20) to hopefully
find out if that 17p chromosome showed up in the last biopsy & that will
determine what we steps we take next. We have a LOT of decisions to make. If
only we could see into the future so we’d know the best route to take. On a
positive side, we’ve recently heard of many success stories of folks that have
went through these transplants & are living proof that it can be worth the
risk. Sometimes you just gotta take the risk…
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