So, this is as exciting as it gets... the only news this week is that the 'check engine' light is on in Eric's car -- actually, it's Cor's car -- but Eric is the one driving it the most right now, so I will call it Eric's car :)))
Eric has his weekly appointment tomorrow so we'll find out then if there is anything new we should be looking for. Eric does have a very minor rash on the inside of his wrists. No one is concerned and seeing as it started as soon as he began taking Septra (prophylactic antibiotic), it could well be a reaction to that.
Back to studying -- exam tomorrow...
Monday 29 September 2008
Tuesday 23 September 2008
Day 46 "I feel normal!"
Eric's had a great week. The stomach issues have resolved and he's back to eating those big meals. He managed to pick up a cold late last week but he is shaking it off -- I never imagined that his new cells would set up an attack this quickly. I guess a simple common cold (if there is such a thing) is a good first attempt to build new immunity.
His bloodwork today showed that his hemoglobin and platelets are again on the rise after a dip last week. His WBC remains normal. Again, all good signs that the donor cells have engrafted and are getting comfortable.
So with the itching and general transplant malaise over, the stomach issues resolved and a simple cold being overcome, Eric says that he "feels normal"! That is the best news that any of us could hope for just 6 weeks post transplant.
So what happens now? Eric is still on a number of medications. He is on an antibiotic (Septra) twice weekly and an anti-viral (Acyclovir) twice daily that he will continue to take for the next year. Both these drugs are intended to prevent the more serious complications. He is still on one pill a day to keep his stomach happy (Pantoloc) and he takes his immunosuppressive (Tacrolimus) to suppress the new immune system and prevent it from aggressively attacking his organs or skin.
After 90 days, they will start to wean him off the Tacrolimus and slowly allow the new cells more 'freedom'. One of the key features of an Allo transplant is that Eric now has cells that should recognize cancer cells as foreign and eliminate them. Of course, these new cells may also recognize his organs or skin as foreign and GVHD (graft vs host disease) would be an undesirable outcome. The BMT team will monitor him closely for any signs of GVHD and treat immediately. The trick will be to maintain the delicate balance of allowing those wonderful donor cells to attack cancer cells but accept normal cells. This is where you count on having a very experienced and engaged BMT team closely following every detail.
And -- with the home hydration now complete, the doctor even suggested it's just about time that we finally pull that PICC line out. He's had it since last January and it's been a Godsend, but oh wow -- sure would be nice to see the end of that!
So, all good news today - we are blessed.
His bloodwork today showed that his hemoglobin and platelets are again on the rise after a dip last week. His WBC remains normal. Again, all good signs that the donor cells have engrafted and are getting comfortable.
So with the itching and general transplant malaise over, the stomach issues resolved and a simple cold being overcome, Eric says that he "feels normal"! That is the best news that any of us could hope for just 6 weeks post transplant.
So what happens now? Eric is still on a number of medications. He is on an antibiotic (Septra) twice weekly and an anti-viral (Acyclovir) twice daily that he will continue to take for the next year. Both these drugs are intended to prevent the more serious complications. He is still on one pill a day to keep his stomach happy (Pantoloc) and he takes his immunosuppressive (Tacrolimus) to suppress the new immune system and prevent it from aggressively attacking his organs or skin.
After 90 days, they will start to wean him off the Tacrolimus and slowly allow the new cells more 'freedom'. One of the key features of an Allo transplant is that Eric now has cells that should recognize cancer cells as foreign and eliminate them. Of course, these new cells may also recognize his organs or skin as foreign and GVHD (graft vs host disease) would be an undesirable outcome. The BMT team will monitor him closely for any signs of GVHD and treat immediately. The trick will be to maintain the delicate balance of allowing those wonderful donor cells to attack cancer cells but accept normal cells. This is where you count on having a very experienced and engaged BMT team closely following every detail.
And -- with the home hydration now complete, the doctor even suggested it's just about time that we finally pull that PICC line out. He's had it since last January and it's been a Godsend, but oh wow -- sure would be nice to see the end of that!
So, all good news today - we are blessed.
Tuesday 16 September 2008
Day 39 - Grateful for Little Frustrations...
Ever have a bad day? I guess most of us have had days like the one Eric and I just had. It was full of frustrations and ended without any of our "issues" being resolved.
Today Eric was scheduled for his first post transplant follow up in 'MOD L'. From here on, all Eric's appointments will be with the BMT team in the BMT clinic. In Ottawa, everyone who needs to see a hematologist knows about MOD L.
To start off, the scheduler did not have Eric's info and no appointment had been booked. That was an easy fix - they squeezed him in at 11am. Arriving at 11, we realized how hard they had to squeeze to fit us in.... The waiting area was a sea of masked BMT patients (they are easy to spot!). We settled in for a long wait and finally got into a room at 12:45. It didn't take a rocket scientist to realize that everyone had waited equally long and that the admins, coordinators and doctors weren't going to see a lunch break. So that little irritation was quickly squelched.
Eric has been plagued with a sore stomach... No one has really been able to figure out what's wrong so today, our goal was to tackle two issues -- see what we can do about the sore gut (that is impacting eating and exercise) and get prescriptions filled. The doctor could easily locate the pain but wanted to see what was going on. If we could get to the ultrasound unit immediately, they would do a scan and send the report back with us. WOW -- gotta love when things work out like that. An hour later scan done and report in hand, we head back to MOD L to find another full waiting area. Made sure they knew that Eric was really continuing his 11am appointment and they got us back in within 20 minutes.
The ultrasound didn't shed any light on the sore gut... A slightly enlarged spleen and liver were expected (remember his blood system is working miracles right now). In good news, there were no signs of fungal infection and all bile ducts looked good. That eliminates two of the most concerning possibilities. But it left us with no idea why his stomach hurts.
On to prescriptions. After several trips back and forth between MOD L and the pharmacy, I gave up! Several approvals are needed to fill his prescriptions under his insurance and they had not been filed. The BMT pharmacist will work to clear this up tomorrow. I have learned that sometimes waiting for the right people is the best solution - even if it takes another day.
By now it's end of day. I am trying to start back to work this week so headed back to the office to retrieve my laptop and briefcase (we expected a 1 hour appointment) then fought rush hour traffic to get Eric home and head back to Morrisburg. Morgan had already had to leave mid afternoon to make it to work.
I get to go back tomorrow to get the prescription challenge sorted and we both go back Friday for a follow up on the sore belly.
And while we all hope that our upcoming twice weekly appointments are less frustrating and more goal oriented (not to mention shorter)... tonight I have to stop myself and be grateful that Eric is here with us. That he has been to hell and back and still smiles. And that he has come through a risky transplant safely.
If I have to have frustrating days, I am sure glad I get to spend them with Eric and the rest of my wonderfully supportive family and friends.
Today Eric was scheduled for his first post transplant follow up in 'MOD L'. From here on, all Eric's appointments will be with the BMT team in the BMT clinic. In Ottawa, everyone who needs to see a hematologist knows about MOD L.
To start off, the scheduler did not have Eric's info and no appointment had been booked. That was an easy fix - they squeezed him in at 11am. Arriving at 11, we realized how hard they had to squeeze to fit us in.... The waiting area was a sea of masked BMT patients (they are easy to spot!). We settled in for a long wait and finally got into a room at 12:45. It didn't take a rocket scientist to realize that everyone had waited equally long and that the admins, coordinators and doctors weren't going to see a lunch break. So that little irritation was quickly squelched.
Eric has been plagued with a sore stomach... No one has really been able to figure out what's wrong so today, our goal was to tackle two issues -- see what we can do about the sore gut (that is impacting eating and exercise) and get prescriptions filled. The doctor could easily locate the pain but wanted to see what was going on. If we could get to the ultrasound unit immediately, they would do a scan and send the report back with us. WOW -- gotta love when things work out like that. An hour later scan done and report in hand, we head back to MOD L to find another full waiting area. Made sure they knew that Eric was really continuing his 11am appointment and they got us back in within 20 minutes.
The ultrasound didn't shed any light on the sore gut... A slightly enlarged spleen and liver were expected (remember his blood system is working miracles right now). In good news, there were no signs of fungal infection and all bile ducts looked good. That eliminates two of the most concerning possibilities. But it left us with no idea why his stomach hurts.
On to prescriptions. After several trips back and forth between MOD L and the pharmacy, I gave up! Several approvals are needed to fill his prescriptions under his insurance and they had not been filed. The BMT pharmacist will work to clear this up tomorrow. I have learned that sometimes waiting for the right people is the best solution - even if it takes another day.
By now it's end of day. I am trying to start back to work this week so headed back to the office to retrieve my laptop and briefcase (we expected a 1 hour appointment) then fought rush hour traffic to get Eric home and head back to Morrisburg. Morgan had already had to leave mid afternoon to make it to work.
I get to go back tomorrow to get the prescription challenge sorted and we both go back Friday for a follow up on the sore belly.
And while we all hope that our upcoming twice weekly appointments are less frustrating and more goal oriented (not to mention shorter)... tonight I have to stop myself and be grateful that Eric is here with us. That he has been to hell and back and still smiles. And that he has come through a risky transplant safely.
If I have to have frustrating days, I am sure glad I get to spend them with Eric and the rest of my wonderfully supportive family and friends.
Friday 12 September 2008
2008 NASCAR Foundation Blood and Marrow Drive
July to October at race tracks nationwide
This summer and fall, join with thousands of other race fans to help save lives.
Be part of the annual NASCAR Foundation® Blood and Marrow Drive — give blood and join the NMDP Registry as a bone marrow donor. Race tracks nationwide have teamed up with the Hendrick Marrow Program and National Marrow Donor Program (NMDP), The NASCAR Foundation and the Jimmie Johnson Foundation (www.jimmiejohnsonfoundation.org) to save lives.
Life.
It's in you.Join the donor Registry and give hope to patients everywhere.
To help you save a life, the Nationwide Foundation and the Hendrick Marrow Program are covering costs for volunteers who join at a participating track or online during a special campaign September 7 - 22, 2008. Join at a race track near you Visit The NASCAR Foundation to find participating tracks: http://foundation.nascar.com/NetCommunity/Page.aspx?&pid=201&srcid=183
Can't make it to a track? Join the NMDPRegistry for free September 7 - 22
Join online now.
Thursday 11 September 2008
Discharged from BMT!
Eric was officially discharged from the Bone Marrow Transplant program yesterday! Although he has been outpatient for most of the transplant, this does mean that he no longer has to make daily trips to the hospital. It also signifies that his blood counts have finally climbed into a low normal range (rather than a critical range) and he is doing well.
He will continue to get hydration daily at home. The drugs have been hard on his kidneys and the hydration is to support his kidneys while his immunosuppressants are tweaked. He'll have twice weekly appointments for a while to check blood counts and his overall health.
For me, it means that I am at home! I have lived at the kids apartment since the end of July. Both times I came home for a visit, Eric ended up in Emergency! I am going back to work next week and will probably bounce between Morrisburg and the apartment a bit depending on what Eric needs and how he's feeling. We have left one car in Ottawa for Morgan and Eric so we may have to figure out car logistics for the next while.
Thanks again for all your well wishes, comments, emails and calls -- it is appreciated.
He will continue to get hydration daily at home. The drugs have been hard on his kidneys and the hydration is to support his kidneys while his immunosuppressants are tweaked. He'll have twice weekly appointments for a while to check blood counts and his overall health.
For me, it means that I am at home! I have lived at the kids apartment since the end of July. Both times I came home for a visit, Eric ended up in Emergency! I am going back to work next week and will probably bounce between Morrisburg and the apartment a bit depending on what Eric needs and how he's feeling. We have left one car in Ottawa for Morgan and Eric so we may have to figure out car logistics for the next while.
Thanks again for all your well wishes, comments, emails and calls -- it is appreciated.
Sunday 7 September 2008
Day +30
The past month has seemed like a time warp. One moment the time seems to have flown by; yet the next moment, it feels like a lifetime....
Eric continues to do very well. He still makes a daily trip to the BMT daycare unit for bloodwork, prophylactic antibiotics and hydration. They continue to adjust his meds and usually that means fewer pills to take - yeah!!! His blood counts are rising although all are still below normal. They expect his blood counts to be up and down for sometime as the donor cells become comfortable in his body and his body adjusts to the new cells.
Although he has to avoid large crowds where the chance of meeting sick people increases, Eric is allowed to go out while taking sensible precautions. He's been out with friends, out for walks, trips to the mall during off peak hours. He is allowed to eat out as long as he makes careful choices. He avoids deli meats (don't we all right now following the extensive recall?!), raw eggs, blue cheese -- anything that may harbour nasty bacterias or fungi. Raw fruits and vegetables are carefully prepared, cooked or avoided. Meats are well done - no medium rare steak for a little while.
So what's next? Over the coming months, we continue the hyper-vigilence around Eric's general health. The BMT team has told him that most Allo transplant patients have another hospital stay at some point - usually an infection that the baby immune system is unable to handle. He'll continue to take his temperature twice a day and be on the lookout for any changes that might signal the start of an infection. He also watches carefully for any skin changes/rashes or diarrhea that could be a sign of GVHD (graft vs host disease). His first chimerism test (to assess the percentage of donor cells in his body) will be at day +60.
Still some hurdles ahead, but Day +30 looks like a mighty fine day!
Eric continues to do very well. He still makes a daily trip to the BMT daycare unit for bloodwork, prophylactic antibiotics and hydration. They continue to adjust his meds and usually that means fewer pills to take - yeah!!! His blood counts are rising although all are still below normal. They expect his blood counts to be up and down for sometime as the donor cells become comfortable in his body and his body adjusts to the new cells.
Although he has to avoid large crowds where the chance of meeting sick people increases, Eric is allowed to go out while taking sensible precautions. He's been out with friends, out for walks, trips to the mall during off peak hours. He is allowed to eat out as long as he makes careful choices. He avoids deli meats (don't we all right now following the extensive recall?!), raw eggs, blue cheese -- anything that may harbour nasty bacterias or fungi. Raw fruits and vegetables are carefully prepared, cooked or avoided. Meats are well done - no medium rare steak for a little while.
So what's next? Over the coming months, we continue the hyper-vigilence around Eric's general health. The BMT team has told him that most Allo transplant patients have another hospital stay at some point - usually an infection that the baby immune system is unable to handle. He'll continue to take his temperature twice a day and be on the lookout for any changes that might signal the start of an infection. He also watches carefully for any skin changes/rashes or diarrhea that could be a sign of GVHD (graft vs host disease). His first chimerism test (to assess the percentage of donor cells in his body) will be at day +60.
Still some hurdles ahead, but Day +30 looks like a mighty fine day!
Friday 5 September 2008
Stand Up to Cancer
If you are reading this, you are touched by cancer. You know me or Eric and are interested in seeing him get better and see the end of chemo, nausea, pain and baldness for him and all the other people we know who are fighting this fight.
Please take a moment to Stand Up to Cancer... You can make a donation that goes directly to Hodgkins Lymophoma research through the Alese Coco Fight2Win organization or donate through the Stand Up To Cancer website. In Canada, please consider the Leukemia and Lymphoma Society of Canada.
Your donation may be the one that makes the difference.
Thanks everyone,
Kathy
Wednesday 3 September 2008
Doing Well
We are back to the Outpatient BMT routine. Eric visits daily for hydration and blood work. His kidneys are having some issues with the Tacrolimus (an immunosuppressive) and he needs daily monitoring of the Tac levels in his blood. He is working to increase his fluid intake and the pharmacist and hematologists have reduced both the tacrolimus and fluconozole. Today's blood work showed some improvement so we seem to be on the right track.
Other than a lack of appetite, Eric is doing quite well. He's happy to be back home and out of the confines of isolation! He's getting out for daily walks but obviously, stays away from crowds. With his brand new immune system, it will take time to get it working again. Getting well is his full time job for the next little while and we are all working to support him in that goal.
Other than a lack of appetite, Eric is doing quite well. He's happy to be back home and out of the confines of isolation! He's getting out for daily walks but obviously, stays away from crowds. With his brand new immune system, it will take time to get it working again. Getting well is his full time job for the next little while and we are all working to support him in that goal.
Monday 1 September 2008
Blogging About Transplants....
So blogging is pretty common in the transplant world (actually I guess it is common in the cancer world...). I have learned so much in reading blogs by other transplant warriors... And of course, how do I find these blogs? Google, of course.
So, I have been wondering... do donors blog too? Found out today that both Eric and I have played the "hmmm.... wonder if our donor wrote about his/her experience in a blog?" game. Hey, what can I say... I am curious!
No, we didn't find any clues online about the mysterious and generous donor but I did find this great story:
Jim's Story
This is a story of a transplant patient who did find his donor through a google search!
So, I have been wondering... do donors blog too? Found out today that both Eric and I have played the "hmmm.... wonder if our donor wrote about his/her experience in a blog?" game. Hey, what can I say... I am curious!
No, we didn't find any clues online about the mysterious and generous donor but I did find this great story:
Jim's Story
This is a story of a transplant patient who did find his donor through a google search!
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