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~
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