It has been two steps forward and one step back lately (sometimes even one step forward and two steps back....).
In the good news column, Eric's blood counts are rising dramatically now. This is a good sign for him.
In the not good news column, the pain in his side turned out to be a couple of tiny abscesses on his liver. While not uncommon following a transplant, he didn't need this new bump in the road. It's causing pain and is just one more complication. Fortunately, this type of abscess will respond to a specific antibiotic. And with recovering white counts, he can come off some of the other prophalactic antibiotics.
So it looks like he'll be in the hospital a while longer. He is still not eating so he needs to be on TPN, he needs IV antibiotics and he needs to be inpatient for pain control.
He's been down lately - certainly understandable. He does have his internet access back again (it's a pilot program in the hospital and I guess there is not a process in place to fix it when it doesn't work - took a while to get it back on). He does read his email and blog comments even if he can't always respond. We all appreciate the kind words, prayers and good thoughts. Thank you.
Wednesday, 31 December 2008
Saturday, 27 December 2008
Day 23
Eric's WBC is still rising slowly - but it is going in the right direction. He's had a few minor issues over the last few days - his PICC line had to be re-adjusted after migrating and coiling up near his heart. This meant that he had to have a traditional IV for his antibiotics etc and his TPN was discontinued for a bit. A final adjustment late yesterday and subsequent xray showed that the line is back where it should be.
He's had a sore belly and will have a CT scan later today to see if anything shows up. Pain meds are keeping any pain under control. We do need to remind him that there are no medals for putting up with pain and that he really will get better quicker when he is 'feelin no pain'.
He's still not eating much of anything. Solid foods seem to upset his stomach. He does drink juices and Ensure or Boost. We'll bring in a Booster Juice later today for a bit of a change.
We had a nice Christmas although very different from other years. We took turns visiting Eric to keep him company and that worked well. We'll definitely plan on another turkey dinner when Eric feels better!
Dexter is keeping us smiling! He's had a steady stream of visitors lately and loves every minute of it. He's just fit into the family wonderfully and is just what we all needed to make us laugh and give us 'Dexter' stories. Morgan and her family came for a visit yesterday and he has definitely added her to his favorite people list. Shelley and Dave were home for Christmas and brought their cat Helix -- let's just say that Dexter has NOT added Helix to his fave lists!
He's had a sore belly and will have a CT scan later today to see if anything shows up. Pain meds are keeping any pain under control. We do need to remind him that there are no medals for putting up with pain and that he really will get better quicker when he is 'feelin no pain'.
He's still not eating much of anything. Solid foods seem to upset his stomach. He does drink juices and Ensure or Boost. We'll bring in a Booster Juice later today for a bit of a change.
We had a nice Christmas although very different from other years. We took turns visiting Eric to keep him company and that worked well. We'll definitely plan on another turkey dinner when Eric feels better!
Dexter is keeping us smiling! He's had a steady stream of visitors lately and loves every minute of it. He's just fit into the family wonderfully and is just what we all needed to make us laugh and give us 'Dexter' stories. Morgan and her family came for a visit yesterday and he has definitely added her to his favorite people list. Shelley and Dave were home for Christmas and brought their cat Helix -- let's just say that Dexter has NOT added Helix to his fave lists!
Wednesday, 24 December 2008
Christmas Wishes....
It's a special time of the year when many of us have the opportunity to sit back and appreciate our families and friends and we often take time to reflect on the past year.
My first impression of 2008 is that I will be glad to leave it behind! Then I think of the generosity, kindness and warmth that we have seen while Eric fights this beast called Hodgkins. First and foremost, we are incredibly grateful to a kind stranger who has willingly donated bone marrow to Eric twice. This person is truly special. S/he has given this gift of life willingly and has no expectations of anything in return. Likewise, there are hundreds of strangers who have donated blood and platelets - each of you who has donated blood has given Eric or someone like him a chance to keep fighting. These are gifts like no other and they make the presents wrapped and waiting under the tree pale in comparison. Thank you.
I had only one wish for this Christmas. I want Eric to be healthy - I want this transplant to work. Today his white blood count rose! A WBC of 0.2 is like a miracle. While still a dangerously low white count.... this is twice what he has had for the last couple of months. Finally - a sign of engraftment beginning.
May all of you have a wonderfully peaceful holiday season and a HEALTHY and happy 2009.
Merry Christmas to all... and to all a good night.
My first impression of 2008 is that I will be glad to leave it behind! Then I think of the generosity, kindness and warmth that we have seen while Eric fights this beast called Hodgkins. First and foremost, we are incredibly grateful to a kind stranger who has willingly donated bone marrow to Eric twice. This person is truly special. S/he has given this gift of life willingly and has no expectations of anything in return. Likewise, there are hundreds of strangers who have donated blood and platelets - each of you who has donated blood has given Eric or someone like him a chance to keep fighting. These are gifts like no other and they make the presents wrapped and waiting under the tree pale in comparison. Thank you.
I had only one wish for this Christmas. I want Eric to be healthy - I want this transplant to work. Today his white blood count rose! A WBC of 0.2 is like a miracle. While still a dangerously low white count.... this is twice what he has had for the last couple of months. Finally - a sign of engraftment beginning.
May all of you have a wonderfully peaceful holiday season and a HEALTHY and happy 2009.
Merry Christmas to all... and to all a good night.
Tuesday, 23 December 2008
Day +18
These feel like long days.
There is some increase in neutrophils which is very good news - but it all feels very slow. I think we are all impatient and exhausted.
Physically, Eric is doing what they doctors expect. While they continue to monitor his lungs, no infection has ever been identified and he has not had a fever in some time. Quite amazing when you think of it.
He is getting TPN as of yesterday to give him a boost nutritionally.
And we are all very very happy that Harry is back. Harry is a pharmacist on the team who has always taken a special interest in Eric - he is a very very special man with an exceptional skill set and just an all-round nice guy.
There is some increase in neutrophils which is very good news - but it all feels very slow. I think we are all impatient and exhausted.
Physically, Eric is doing what they doctors expect. While they continue to monitor his lungs, no infection has ever been identified and he has not had a fever in some time. Quite amazing when you think of it.
He is getting TPN as of yesterday to give him a boost nutritionally.
And we are all very very happy that Harry is back. Harry is a pharmacist on the team who has always taken a special interest in Eric - he is a very very special man with an exceptional skill set and just an all-round nice guy.
Friday, 19 December 2008
Day +14
Eric's cough got a bit worse on Tuesday so we are back to droplet precautions (masks for all who enter his room and he is confined to his room) and yet another chest xray and CT scan. By yesterday his cough seemed alot better so not sure what's up. They also did a CT scan of his abdomen area as his red blood counts dropped more than expected on Thursday.
Not really alot more to update. We're waiting on blood counts to start to rise.... As the Ottawa team does not use Neupogen to artificially stimulate white cell production after and allo and he had a marrow infusion (rather than stem cells), engraftment is expected to take longer. First signs of higher blood counts are expected sometime between 15- 20 days.
Not really alot more to update. We're waiting on blood counts to start to rise.... As the Ottawa team does not use Neupogen to artificially stimulate white cell production after and allo and he had a marrow infusion (rather than stem cells), engraftment is expected to take longer. First signs of higher blood counts are expected sometime between 15- 20 days.
Sunday, 14 December 2008
Day +10
Eric has the strength, patience, persistence and good humour of a saint. The days go on and they are pretty boring, yucky and lonely - yet he justs keep on trucking.
He still sounds like he has a really bad cold - and maybe that is exactly what he has. Multiple CTs and broncoscopies are showing that his lungs are clear (thank goodness) or the myriad of IV antibiotics and anti-fungals are keeping anything from growing. I think his ear and throat are somewhat better - or else the pain meds are doing a better job of keeping the pain in check. He said his ear finally 'popped' yesterday so that must feel better.
Food has become a major issue. Between a sore throat, no appetite and unappealing hospital food that just doesn't want to stay down, he can't get the calories in that he needs. He agreed to try tube feeding over the weekend, but the first time he threw up, the tube came too. His doctors prefer the naso-gastric tube to TPN, but I think for Eric, TPN might be the answer. We'll see what happens over the next few days. Big advantage to an outpatient transplant is that you have more of the foods of your choice 24*7 and Mom is the cook! Some of the nurses are really good to put something new in front of him to sip on several times during the day. Then there are others who should not be allowed in a hospital let alone looking after people. Second big advantage to an out-patient BMT, the out-patient nurses are the best in the hospital - every one of them is simply outstanding.
So this week, we start watching for blood counts to rise. And hope that he starts to feel just a bit better....
He still sounds like he has a really bad cold - and maybe that is exactly what he has. Multiple CTs and broncoscopies are showing that his lungs are clear (thank goodness) or the myriad of IV antibiotics and anti-fungals are keeping anything from growing. I think his ear and throat are somewhat better - or else the pain meds are doing a better job of keeping the pain in check. He said his ear finally 'popped' yesterday so that must feel better.
Food has become a major issue. Between a sore throat, no appetite and unappealing hospital food that just doesn't want to stay down, he can't get the calories in that he needs. He agreed to try tube feeding over the weekend, but the first time he threw up, the tube came too. His doctors prefer the naso-gastric tube to TPN, but I think for Eric, TPN might be the answer. We'll see what happens over the next few days. Big advantage to an outpatient transplant is that you have more of the foods of your choice 24*7 and Mom is the cook! Some of the nurses are really good to put something new in front of him to sip on several times during the day. Then there are others who should not be allowed in a hospital let alone looking after people. Second big advantage to an out-patient BMT, the out-patient nurses are the best in the hospital - every one of them is simply outstanding.
So this week, we start watching for blood counts to rise. And hope that he starts to feel just a bit better....
Wednesday, 10 December 2008
Day + 6
The days are moving along and boring continues. Although Eric hasn't had a fever in a while, the doctors are still suspicious of his lungs. He has had another chest xray, CT scan and will have a second broncoscopy today. So far nothing definitive is showing up but he does have a sore congested throat. Fortunately, it's not affecting his breathing or causing a fever.
On a brighter note, he did complain today that he wasn't allowed to eat until after the broncoscopy! Considering he has had NO appetite - I am taking this complaint as good news.
I am still snowed in at home. Traffic in Ottawa is absolutely outrageous today with the constant snowfall (2 days now) piling up and the bus drivers on strike. With a bit of luck, the snow may settle down this afternoon and they will be able to get the roads cleared so I can get into the hospital. I hate being stuck here! Glad this is an inpatient transplant this time round.
On a brighter note, he did complain today that he wasn't allowed to eat until after the broncoscopy! Considering he has had NO appetite - I am taking this complaint as good news.
I am still snowed in at home. Traffic in Ottawa is absolutely outrageous today with the constant snowfall (2 days now) piling up and the bus drivers on strike. With a bit of luck, the snow may settle down this afternoon and they will be able to get the roads cleared so I can get into the hospital. I hate being stuck here! Glad this is an inpatient transplant this time round.
Sunday, 7 December 2008
Day +3
Not alot of news - which is probably a good thing. Eric is tired and has no appetite - just feeling overall blah....
Although he hasn't had a fever in over a week, the team continues to monitor him carefully for any signs of infection. So far, nothing. A tiny spot on Friday's chest xray won him a CT that he'll have sometime over the weekend when there is an open space in the schedule.
Shelley and Dave's 'at home' reception was last night and it was lovely. The snow did change our plans and Cor and I ended up staying overnight in Belleville. And that ends the months (years?) of wedding planning and weeks of celebrations!
Thanks again for your comments, emails, prayers and warm thoughts as we wait for these cells to do the trick.
Although he hasn't had a fever in over a week, the team continues to monitor him carefully for any signs of infection. So far, nothing. A tiny spot on Friday's chest xray won him a CT that he'll have sometime over the weekend when there is an open space in the schedule.
Shelley and Dave's 'at home' reception was last night and it was lovely. The snow did change our plans and Cor and I ended up staying overnight in Belleville. And that ends the months (years?) of wedding planning and weeks of celebrations!
Thanks again for your comments, emails, prayers and warm thoughts as we wait for these cells to do the trick.
Thursday, 4 December 2008
The Biggest Bag O Marrow Ever!
Today was transplant day and that was the biggest bag of cells that anyone had ever seen! Just under 2 litres of marrow! It was alot of fluid for Eric to take in (combined with all the regular IV antibiotics and antifungals) but it's all in there and hopefully lots of stem cells will be ready to set up housekeeping.
The actual transplant is just like a blood transfusion - it is not terribly exciting to watch. Although, I look at that bag of cells with amazement and think of the years of research behind procedures such as a bone marrow transplant. Eric is fine - Morgan arrived with a Booster Juice for him just as I was leaving and they had just watched the wedding video.
Dear donor, I hope you are not too sore following the bone marrow aspiration. Thank you.
The actual transplant is just like a blood transfusion - it is not terribly exciting to watch. Although, I look at that bag of cells with amazement and think of the years of research behind procedures such as a bone marrow transplant. Eric is fine - Morgan arrived with a Booster Juice for him just as I was leaving and they had just watched the wedding video.
Dear donor, I hope you are not too sore following the bone marrow aspiration. Thank you.
Wednesday, 3 December 2008
Day - 1
A bit of a bummer of a day for Eric. Some people should not be nurses... or maybe their strength is just not in helping a young man.... I have to say that 99% of the nurses who have helped Eric have been awesome -- perhaps we are spoiled! Anyway, a quick mention to the nursing supervisor and Eric will get another nurse tomorrow. I am always impressed by quick positive responses.
So, conditioning chemo is finished and it was fairly easy and well tolerated. Today Eric had a session of plasmapherisis to reduce the A antibodies in his system (don't want them to attack the A - cells that he gets tomorrow). It was tough to get veins, but Cheryl was summoned and she had him hooked up in no time. Eric has made it clear that she is the only one who is always successful in finding a vein. I figure he has been poked enough in his life that he only deserves the best. Thank you Cheryl!
Dermatology came in for a consultation today too. He has some spots on his legs that they wanted to look at. An interesting specialty... they seem to travel in pairs and do alot of "hmmm... look at this.." Bottom line is that these spots have been around for a couple of weeks, they haven't changed and they don't bother him. A biopsy would not likely tell them how to treat and it may be risky for him. It was a total non - consult.
Tomorrow is transplant day. The donor will be collected (bone marrow aspiration) in the morning. As with the first transplant, my theory is that the donor is near Ottawa or travels to Ottawa and the bone marrow harvest happens in the Ottawa Hospital. And I ain't telling how I know that! Eric will get the marrow late in the day which means that he will likely have 2 Day 0s. Saturday will be considered Day +1.
I am curious to see if Eric loses his hair again. The chemo drugs he has had do not tend to cause the type of hair loss that most chemo does. This time his hair is growing in quite fine and fair. The last time it grew back, it was very dark and coarse. We'll see - not really a huge issue for him. He's lucky that bald is in and it quite suits him!
And again, thanks for all your warm thoughts and prayers. Truly appreciated.
So, conditioning chemo is finished and it was fairly easy and well tolerated. Today Eric had a session of plasmapherisis to reduce the A antibodies in his system (don't want them to attack the A - cells that he gets tomorrow). It was tough to get veins, but Cheryl was summoned and she had him hooked up in no time. Eric has made it clear that she is the only one who is always successful in finding a vein. I figure he has been poked enough in his life that he only deserves the best. Thank you Cheryl!
Dermatology came in for a consultation today too. He has some spots on his legs that they wanted to look at. An interesting specialty... they seem to travel in pairs and do alot of "hmmm... look at this.." Bottom line is that these spots have been around for a couple of weeks, they haven't changed and they don't bother him. A biopsy would not likely tell them how to treat and it may be risky for him. It was a total non - consult.
Tomorrow is transplant day. The donor will be collected (bone marrow aspiration) in the morning. As with the first transplant, my theory is that the donor is near Ottawa or travels to Ottawa and the bone marrow harvest happens in the Ottawa Hospital. And I ain't telling how I know that! Eric will get the marrow late in the day which means that he will likely have 2 Day 0s. Saturday will be considered Day +1.
I am curious to see if Eric loses his hair again. The chemo drugs he has had do not tend to cause the type of hair loss that most chemo does. This time his hair is growing in quite fine and fair. The last time it grew back, it was very dark and coarse. We'll see - not really a huge issue for him. He's lucky that bald is in and it quite suits him!
And again, thanks for all your warm thoughts and prayers. Truly appreciated.
Tuesday, 2 December 2008
Day - 3
Ugh - didn't really think I'd ever be starting new posts with another countdown...
Day -3 was an uneventful but sleepy day. More Fludarabine and Campath - lots of benedryl to counter some minor reactions to the Campath.
Eric was relieved to hear yesterday that the do not expect he will have the severe mucositis that he had with the first transplant. Because his white counts have been low for a while now, there will not be that sudden drop in counts that leads to the nasty sore mouth, throat and gut. Certainly hope they are right - he deserves even a tiny break.
And finally, just for you, Veronica..... After all, you have been our number 1 fan forever! You know we love your support and messages and I could never ignore a request from you.
Day -3 was an uneventful but sleepy day. More Fludarabine and Campath - lots of benedryl to counter some minor reactions to the Campath.
Eric was relieved to hear yesterday that the do not expect he will have the severe mucositis that he had with the first transplant. Because his white counts have been low for a while now, there will not be that sudden drop in counts that leads to the nasty sore mouth, throat and gut. Certainly hope they are right - he deserves even a tiny break.
And finally, just for you, Veronica..... After all, you have been our number 1 fan forever! You know we love your support and messages and I could never ignore a request from you.
Sunday, 30 November 2008
Hola!
Shelley and Dave are married and it was a wonderful week in Punta Cana - sun, sand and family. It was a nice relaxing week for Cor and I. But we all missed Eric and Morgan terribly. I can't wait to plan a family vacation for all of us. A week away and I am fully charged and ready to help Eric through the next transplant. Yes, transplant #2 is scheduled.
Last Wednesday we found out that our wonderful donor has agreed to donate again (marrow, so this means surgery for her/him). I now fully understand the need for anonymity - how could I ever begin to repay this person for their generosity - not just once but twice. To all of you who have been able to join the bone marrow donor registry, please accept my grateful and humble thanks - any of you could be saving someone's life.
So Eric started conditioning chemo on Saturday and the transplant is scheduled for Thursday. This round of chemo will be milder (I guess there is not much to kill off) and will be augmented with Campath. As I understand it (and I haven't talked to the doctors yet), this drug will help to reduce the T cells. I also think this drug will eliminate the need for plasma pharesis (which Eric hated).
He'll also be inpatient for this transplant because he has so recently experienced fevers (no infection found despite a robust series of tests). While the outpatient transplant option is great and I feel that it worked well for Eric in August, I think we are both relieved to be inpatient this time. As well as the recent fevers and the fact that this is a second transplant in 4 months, the winter season is here and a snow or ice storm could make a daily commute to the hospital close to impossible. This combination of risks cannot be ignored or mitigated.
As always, your prayers, positive thoughts and blog comments are truly appreciated and welcome.
Tuesday, 18 November 2008
A Good Weekend
Eric had a good weekend at home. He visited the BMT unit daily for antibiotics and received blood / platelets as necessary. He is back inpatient as of yesterday and a different round of antibiotics has been initiated. With no immune system, the goal is to keep him free from infection and we expect he'll be on some sort of antibiotic until the next transplant.
We certainly appreciate the flexibility that the BMT team has shown, allowing Eric to be home when possible yet quickly re-admitting when required. Next week, the rest of the family will be in the Dominican Republic for Shelley's (Eric's big sister!) wedding. I am so looking forward to the trip and the wedding but I am equally sad that Eric and Morgan will not be travelling with us. Morgan and her family will be Eric's 'home team' while we are gone and of course, the BMT unit will continue to give him the support he needs. Luckily, phones and internet access will keep this Mom connected.
Eric reads the blog and all your comments regularly. Maybe we can convince him to keep it updated next week! As always we appreciate all your support and care and concern. I know that a few special people will comment regularly letting Eric know that they are keeping an eye on him from a distance too.
We certainly appreciate the flexibility that the BMT team has shown, allowing Eric to be home when possible yet quickly re-admitting when required. Next week, the rest of the family will be in the Dominican Republic for Shelley's (Eric's big sister!) wedding. I am so looking forward to the trip and the wedding but I am equally sad that Eric and Morgan will not be travelling with us. Morgan and her family will be Eric's 'home team' while we are gone and of course, the BMT unit will continue to give him the support he needs. Luckily, phones and internet access will keep this Mom connected.
Eric reads the blog and all your comments regularly. Maybe we can convince him to keep it updated next week! As always we appreciate all your support and care and concern. I know that a few special people will comment regularly letting Eric know that they are keeping an eye on him from a distance too.
Friday, 14 November 2008
Surprise! He's Home!
We were very surprised today when the doctor told Eric they would spring him from the confines of the hospital - at least for a while. With his fever gone and everything a bit settled, he is home and will return daily for blood work and IV antibiotics. He'll still need blood and platelets regularly and he is confined to his apartment. If he's out, he has to wear a mask.
The remains of yesterday's extreme reaction to the CT scan dye are still very visible. Because his platelets are low, the swelling and subsequent vomiting caused a flood of petechiae, a couple of black eyes and a burst blood vessel or two in his eyes. He looks like he met up with Rocky in a back alley.
In the meantime, the BMT team is working in the background to firm up plans for another transplant. As Eric's donor is anonymous, OneMatch now has all the information and will work with the donors (we don't know if he will have the same donor) to establish timelines and next steps.
While it is a bit scary to be out of the hospital after this roller coaster of a week, at least Eric can be comfortable at home and we have the full support of the BMT group again should issues arise.
The remains of yesterday's extreme reaction to the CT scan dye are still very visible. Because his platelets are low, the swelling and subsequent vomiting caused a flood of petechiae, a couple of black eyes and a burst blood vessel or two in his eyes. He looks like he met up with Rocky in a back alley.
In the meantime, the BMT team is working in the background to firm up plans for another transplant. As Eric's donor is anonymous, OneMatch now has all the information and will work with the donors (we don't know if he will have the same donor) to establish timelines and next steps.
While it is a bit scary to be out of the hospital after this roller coaster of a week, at least Eric can be comfortable at home and we have the full support of the BMT group again should issues arise.
Thursday, 13 November 2008
Not a Good Day
Eric had a scheduled CT scan today (his 90 day scan was past due). He's had dozens of these and they are not a big deal. Of all days, today he had an allergic reaction to the contrast dye. Just not what he needed on top of everything else.
He's feeling a bit better this evening, but his face is still swollen and he has quite a rash. And the high doses of benedryl they gave him made him both restless and sleepy - ugh...
On a brighter note, the social worker swung by for a visit and she has some tricks up her sleeve to help make this hospital stay more tolerable.
That's it for tonight. Thanks again for all your prayers and positive thoughts.
He's feeling a bit better this evening, but his face is still swollen and he has quite a rash. And the high doses of benedryl they gave him made him both restless and sleepy - ugh...
On a brighter note, the social worker swung by for a visit and she has some tricks up her sleeve to help make this hospital stay more tolerable.
That's it for tonight. Thanks again for all your prayers and positive thoughts.
Wednesday, 12 November 2008
Empty Marrow
We got the news we expected today. Eric's bone marrow biopsy shows empty marrow. There are no cells there to make new blood cells. Why? We don't know yet and we may never know... Sometimes it's viral and sometimes it's an obvious host rejection. Most of the time, the doctors do not find the cause.
So What's Next?
Although 'the plan' isn't in place yet, Eric will receive another infusion of donor cells. Yes, he will also need more chemo (not sure yet what the chemo will be killing...) Basically it's another transplant.
We have suspected this for the last couple of weeks so I think we are all in the 'let's do it' mode already.
Eric is feeling pretty good. The fever has not returned so hopefully the antibiotics will keep it at bay. Today they moved him back to the BMT unit, so he's set up in a nice private room with all the best nurses and the special menus.
The human spirit continues to amaze me - I am in awe of what we can do when we have to. But really! Eric and Morgan and all of us are plenty strong. We really don't need to keep proving it.
So What's Next?
Although 'the plan' isn't in place yet, Eric will receive another infusion of donor cells. Yes, he will also need more chemo (not sure yet what the chemo will be killing...) Basically it's another transplant.
We have suspected this for the last couple of weeks so I think we are all in the 'let's do it' mode already.
Eric is feeling pretty good. The fever has not returned so hopefully the antibiotics will keep it at bay. Today they moved him back to the BMT unit, so he's set up in a nice private room with all the best nurses and the special menus.
The human spirit continues to amaze me - I am in awe of what we can do when we have to. But really! Eric and Morgan and all of us are plenty strong. We really don't need to keep proving it.
Tuesday, 11 November 2008
Feeling Better But Waiting for Answers
Eric is feeling better today and the high fever (it hit 38.9 C last night) seems to have disappeared. This afternoon his temp was normal and despite his lack of appetite, he was happy to share a bag a chips with me. He's actually looking pretty good today and his sense of humour remains intact!
So, just to recap what's going on.... Eric had a full ablative allo transplant on August 7/08. He engrafted without serious complication and had even changed to his donor's blood type (he went from O neg > A neg). He maintained good RBC, WBC and platelet counts until mid-October. Since then all his counts have dropped. While a graft rejection is the first suspect, it is now clear that there is something destroying his blood cells (and, who knows? graft failure may also be an issue). We are currently waiting on bone marrow biopsy results to help the team determine what's going on and what we need to do to stop it.
So, at this point he is dependent on transfusions of blood and platelets and will be on IV antibiotics to kill off any opportunistic infection that may have caused the high fever.
Today was a stat holiday for most of Canada so few test results were expected. Tomorrow, we do hope that the docs will have a better view into the state of his bone marrow and start devising a solution.
But tonight there is a Sens game on and Eric's main concern today was that the TV guy would get his television turned on so that he wouldn't miss the game. I guess the TV guy was in a good mood today - he turned on the feed even without grabbing his horrendous weekly fee (cash only please) in advance....
Wondering what you can do to help? Obviously, those of you who can give blood, please do so. Other than that, prayers, good vibes, positive thoughts are all needed and welcome. For the Hodgkins folks who are always reading and so well educated in this crappy disease and its treatments, please forward any studies or research you may come across regarding graft failure, hemolytic anemia and pancytopenia.
Oh and for all you Aunts and Uncles, the TV guy prefers cash ;))))
So, just to recap what's going on.... Eric had a full ablative allo transplant on August 7/08. He engrafted without serious complication and had even changed to his donor's blood type (he went from O neg > A neg). He maintained good RBC, WBC and platelet counts until mid-October. Since then all his counts have dropped. While a graft rejection is the first suspect, it is now clear that there is something destroying his blood cells (and, who knows? graft failure may also be an issue). We are currently waiting on bone marrow biopsy results to help the team determine what's going on and what we need to do to stop it.
So, at this point he is dependent on transfusions of blood and platelets and will be on IV antibiotics to kill off any opportunistic infection that may have caused the high fever.
Today was a stat holiday for most of Canada so few test results were expected. Tomorrow, we do hope that the docs will have a better view into the state of his bone marrow and start devising a solution.
But tonight there is a Sens game on and Eric's main concern today was that the TV guy would get his television turned on so that he wouldn't miss the game. I guess the TV guy was in a good mood today - he turned on the feed even without grabbing his horrendous weekly fee (cash only please) in advance....
Wondering what you can do to help? Obviously, those of you who can give blood, please do so. Other than that, prayers, good vibes, positive thoughts are all needed and welcome. For the Hodgkins folks who are always reading and so well educated in this crappy disease and its treatments, please forward any studies or research you may come across regarding graft failure, hemolytic anemia and pancytopenia.
Oh and for all you Aunts and Uncles, the TV guy prefers cash ;))))
Back In The Hospital
Just a quick update that Eric was admitted last night with a fever. Not sure what the source of infection is yet - they are running the standard blood cultures and xrays and started him on IV antibiotics right away.
Will post again when we know more.
Will post again when we know more.
Friday, 7 November 2008
More Blood and a Bone Marrow Biopsy
It was a long day in the hospital yesterday getting transfusions of red blood cells and platelets. To mix things up a bit, they added a bone marrow biopsy in the middle of the day too.
Eric takes it all in stride, but a bone marrow biopsy has to be one of the most painful procedures there is.... We knew that it had to be done to get to the bottom of this issue. The sooner they find out why he cannot hold onto blood counts, the faster they can figure out what to do about it.
I am not impressed with the blood bank. In the middle of the day, they decided they needed to do another type and cross before he could get another unit of blood (anyone know why? no...). The blood finally arrives and as the nurses check the blood, they read out o+ I jump on that and say that he can't have O+ blood. One of the nurses says, oh maybe they are starting to give him his donor's type. So much wrong with this statement.... First they have been giving him his donor's type for weeks. His chart in front of her clearly states his previous blood type (O-) and his donor type (A-).... Where the heck did O+ come from? She called the blood bank and insisted they recheck (I think she saw me give her 'the look' - my kids all know 'the look'). Another wait and a unit of O- appeared. I know mistakes happen. And there are a multitude of processes to check and double check. Yesterday too many people were too busy and all those checks and processes failed to catch this error. When you are in the hospital - pay attention and ask questions. I know that some of the nurses and doctors just think I am a pain in the ass -- well being a PITA payed off yesterday.
As always, your prayers, positive vibes and good thoughts are all appreciated!
Eric takes it all in stride, but a bone marrow biopsy has to be one of the most painful procedures there is.... We knew that it had to be done to get to the bottom of this issue. The sooner they find out why he cannot hold onto blood counts, the faster they can figure out what to do about it.
I am not impressed with the blood bank. In the middle of the day, they decided they needed to do another type and cross before he could get another unit of blood (anyone know why? no...). The blood finally arrives and as the nurses check the blood, they read out o+ I jump on that and say that he can't have O+ blood. One of the nurses says, oh maybe they are starting to give him his donor's type. So much wrong with this statement.... First they have been giving him his donor's type for weeks. His chart in front of her clearly states his previous blood type (O-) and his donor type (A-).... Where the heck did O+ come from? She called the blood bank and insisted they recheck (I think she saw me give her 'the look' - my kids all know 'the look'). Another wait and a unit of O- appeared. I know mistakes happen. And there are a multitude of processes to check and double check. Yesterday too many people were too busy and all those checks and processes failed to catch this error. When you are in the hospital - pay attention and ask questions. I know that some of the nurses and doctors just think I am a pain in the ass -- well being a PITA payed off yesterday.
As always, your prayers, positive vibes and good thoughts are all appreciated!
Thursday, 6 November 2008
For My U.S. Readers....
Become a Donor
Join the Registry today! In honor of Marrow Awareness month, Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.
Click here to sign up online today.
Remember, if you are in Canada, you can always join for free.
In Canada, click here to sign up online today
A few minutes can save a life..... thank you.
Join the Registry today! In honor of Marrow Awareness month, Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.
Click here to sign up online today.
Remember, if you are in Canada, you can always join for free.
In Canada, click here to sign up online today
A few minutes can save a life..... thank you.
Tuesday, 4 November 2008
Waiting... but stable
We are still waiting on the results of chimerism tests that will give us a better view into the status of Eric's graft. The good news today is that his WBC inched up just a tad last week. While no where near normal, the fact that this count has risen on its own (without growth factors) is good news to us. His marrow is making some cells and his health is otherwise good.
He continues to have regular blood testing and is scheduled for more red blood cells and platelets to keep him stable. If you can give blood, now is the time to do so - supplies are down all over and Eric (and many others) will be needing blood in the coming weeks.
As far as drugs go, his tracrolimus has been increased and his septra discontinued. Septra is known to decrease platelets so he will be scheduled to receive Pentamadine. Pentamadine is an inhaled antibiotic that Eric will receive monthly as a prophalactic treatment for PCP, a very serious opportunistic pnuemonia.
Scans are upcoming too. This will be the first set of scans since his transplant and we are certainly hoping to see good results. More to come as the date is confirmed.
A shout out to Paul.... Paul is the owner/manager of the Subway (Carlingwood) that Eric worked at prior to his relapse. Paul is one of those everyday heroes who has kept in touch with Eric. Tonight he's treating Eric to a hockey game -- and trust me... nothing makes him happier than having a chance to see his team play. For any of you wanting to do a little something for Eric - Sens tickets ALWAYS fit! And for those of you in Ottawa, stop by the Subway in Carlingwood and support Paul and his team.
He continues to have regular blood testing and is scheduled for more red blood cells and platelets to keep him stable. If you can give blood, now is the time to do so - supplies are down all over and Eric (and many others) will be needing blood in the coming weeks.
As far as drugs go, his tracrolimus has been increased and his septra discontinued. Septra is known to decrease platelets so he will be scheduled to receive Pentamadine. Pentamadine is an inhaled antibiotic that Eric will receive monthly as a prophalactic treatment for PCP, a very serious opportunistic pnuemonia.
Scans are upcoming too. This will be the first set of scans since his transplant and we are certainly hoping to see good results. More to come as the date is confirmed.
A shout out to Paul.... Paul is the owner/manager of the Subway (Carlingwood) that Eric worked at prior to his relapse. Paul is one of those everyday heroes who has kept in touch with Eric. Tonight he's treating Eric to a hockey game -- and trust me... nothing makes him happier than having a chance to see his team play. For any of you wanting to do a little something for Eric - Sens tickets ALWAYS fit! And for those of you in Ottawa, stop by the Subway in Carlingwood and support Paul and his team.
Wednesday, 29 October 2008
Navigating Unknown Territory
Well, the speed bump has become unknown territory... Eric's blood counts continue to be low. A number of tests are pending including a chimerism panel that will tell us what percentage donor cells are present. In the meantime, more blood and platelets and regular testing to monitor status.
Thursday, 23 October 2008
Speed Bump
We've hit a speed bump this week with some low blood counts. Not sure of the whys yet, but I guess the BMT team will top him up and then try to figure out what's going on.
More to come!
More to come!
Thursday, 16 October 2008
2 Units of A-
For the first time in several weeks, Eric got a couple of units of blood today. And this was the first time that he received his new blood type.... A-. It is very weird to think that his blood type is now different -- definitely seems like something from a science fiction novel.
The funny bumpy rash on his palms looks a bit better. When we went in for his weekly appointment on Tuesday, all the docs had the same shrugs -- not sure what it is or if anything needs to be done. Finally Dr Huebsch comes in... takes one look and says, those are milia -- probably malignant milia. And he sent his team off to research 'milia'. If you have seen baby acne on a newborn, that's what this is. Because Eric is an adult and his immune system is still in its infancy, these darn milia multiplied out of control. So, nothing to worry about -- the milia will remain as a interesting topic of conversation but nothing serious. Dr H has been in the BMT business for decades - nothing replaces experience!
The other minor rashes he had have disappeared. Was it GvHD? Maybe, maybe not.
Other than low hemoglobin that was giving him a headache, no issues -- all continues to go well.
An interesting comment from one of the doctors this week was that they consider Eric's transplant to be a full Allo rather than a mini Allo. I didn't get a chance to ask alot of questions and I guess I was just so surprised to hear that comment that I really didn't know what to ask.... I guess Iam glad that I am only hearing this now -- sometimes ignorance is easier. If I had known this was a full Allo a few months ago, it would have been one more reason to lie awake at night.
The funny bumpy rash on his palms looks a bit better. When we went in for his weekly appointment on Tuesday, all the docs had the same shrugs -- not sure what it is or if anything needs to be done. Finally Dr Huebsch comes in... takes one look and says, those are milia -- probably malignant milia. And he sent his team off to research 'milia'. If you have seen baby acne on a newborn, that's what this is. Because Eric is an adult and his immune system is still in its infancy, these darn milia multiplied out of control. So, nothing to worry about -- the milia will remain as a interesting topic of conversation but nothing serious. Dr H has been in the BMT business for decades - nothing replaces experience!
The other minor rashes he had have disappeared. Was it GvHD? Maybe, maybe not.
Other than low hemoglobin that was giving him a headache, no issues -- all continues to go well.
An interesting comment from one of the doctors this week was that they consider Eric's transplant to be a full Allo rather than a mini Allo. I didn't get a chance to ask alot of questions and I guess I was just so surprised to hear that comment that I really didn't know what to ask.... I guess Iam glad that I am only hearing this now -- sometimes ignorance is easier. If I had known this was a full Allo a few months ago, it would have been one more reason to lie awake at night.
Wednesday, 8 October 2008
Out Damn Spot...
Eric has fascinating palms... at least that seems to be the consensus of the BMT team and the Dermatology team who all came to have a look yesterday. He has some minor rashes (wrists, ankles) that we are pretty sure is GvHD -- it's faint and not something that is bothering him or spreading quickly. All agree that we can safely watch it and see if it gets better or worse.
But then there is his palms. He has an odd looking rash on the palms of his hands that everyone agrees is 'different'. It just doesn't look like anything else they have seen - and it doesn't look like any pictures I can find of GvHD. Eric -- you need to take a picture and post it -- maybe someone out there will know what it is!
For now, they have discontinued his Septra (on the longshot that it's an allergic reaction). And his tracro levels were low, so his tacro dosage was increased. Now we wait and see.
And it took most of the day at the hospital for everyone to swing by and look at his hands. Some interesting conjecture from the various specialists. But no one as eccentric as House!
Other than that - all is well. Lots of Thanksgiving dinners coming up this weekend -- and lots to be thankful for!
But then there is his palms. He has an odd looking rash on the palms of his hands that everyone agrees is 'different'. It just doesn't look like anything else they have seen - and it doesn't look like any pictures I can find of GvHD. Eric -- you need to take a picture and post it -- maybe someone out there will know what it is!
For now, they have discontinued his Septra (on the longshot that it's an allergic reaction). And his tracro levels were low, so his tacro dosage was increased. Now we wait and see.
And it took most of the day at the hospital for everyone to swing by and look at his hands. Some interesting conjecture from the various specialists. But no one as eccentric as House!
Other than that - all is well. Lots of Thanksgiving dinners coming up this weekend -- and lots to be thankful for!
Friday, 3 October 2008
Day 56
Hard to believe that it has been almost 2 months since Eric's transplant.
He's still doing very well - better than I could ever have hoped. He does have a very slight rash on his wrists and a couple of bumps on his palms. The BMT docs had a look at it on Tuesday but it's not significant enough to confirm that it's graft vs host disease (GvHD). Unless it gets worse, they have decided not to do anything. And as of today, it hasn't gotten worse and it's not bothering him. Typically GvHD will show up on the palms of the hands and soles of the feet first, so it is quite likely is a bit of GvHD as his new immune cells recognize the other cells in his body.
It's a bit of balancing act at this point... We want those new cells to recognize unfamiliar cells in hopes that the new immune system will kill off any cancer cells. Yet we don't want the immune system so stimulated that GvHD becomes serious. If the rash worsens or other signs of GvHD appear, they will treat with prednisone.
Other than that, his blood counts, weight, etc are all good. He has weekly appointments for bloodwork and to 'check him out'. Between visits, he still needs to check his temperature regularly -- fever is still a serious concern. His PICC line will stay in for a bit longer and he has to get homecare to change the dressing weekly. He's down to 4 meds -- Tacrolimus (immunosuppressive), Acyclovir (anti-viral), Pantoloc (an acid reducer) and Septra (antibiotic).
And that's how things are 8 weeks post transplant!
He's still doing very well - better than I could ever have hoped. He does have a very slight rash on his wrists and a couple of bumps on his palms. The BMT docs had a look at it on Tuesday but it's not significant enough to confirm that it's graft vs host disease (GvHD). Unless it gets worse, they have decided not to do anything. And as of today, it hasn't gotten worse and it's not bothering him. Typically GvHD will show up on the palms of the hands and soles of the feet first, so it is quite likely is a bit of GvHD as his new immune cells recognize the other cells in his body.
It's a bit of balancing act at this point... We want those new cells to recognize unfamiliar cells in hopes that the new immune system will kill off any cancer cells. Yet we don't want the immune system so stimulated that GvHD becomes serious. If the rash worsens or other signs of GvHD appear, they will treat with prednisone.
Other than that, his blood counts, weight, etc are all good. He has weekly appointments for bloodwork and to 'check him out'. Between visits, he still needs to check his temperature regularly -- fever is still a serious concern. His PICC line will stay in for a bit longer and he has to get homecare to change the dressing weekly. He's down to 4 meds -- Tacrolimus (immunosuppressive), Acyclovir (anti-viral), Pantoloc (an acid reducer) and Septra (antibiotic).
And that's how things are 8 weeks post transplant!
Monday, 29 September 2008
No News Is Fantastic News
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...
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...
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!
Sunday, 31 August 2008
Get Me Outa Here!
Hi Everyone,
Sorry for the lack of updates - it's been a bit of a frustrating week. After Eric was admitted to the inpatient BMT ward last week with a fever, the parainfluenza virus that has been making the rounds at the hospital became a serious concern for several BMT patients. Of course any infection or virus is very serious (and potentially fatal) for those with a compromised immune system. As a result of the virus, the BMT program shut down their outpatient clinics and all transplant patients had to be either inpatient or well enough to be completely discharged to the regular weekly clinic follow up program. This change kept Eric in the hospital to complete his IV antibiotics...
I hate the idea that he is stuck in isolation on a ward where we know patients have come down with this virus. The hospital did a major re-organization of the ward to ensure those who were not struck by the virus had every isolation technique in play to avoid exposure. I am really not sure where those with the virus have gone -- but anyone who had any kind of a cough seems to have been moved - hoping that all are okay. Access to the floor has been severely limited (this is already a tightly controlled environment), additional staff brought in, there are enough masks, gloves, gowns and Purell to sink a ship and the tension permeates the entire floor. You get the picture -- it just hasn't been a very pleasant place to be....
They also gave him a dose of IVIG to provide some passive immunity. He had a nasty reaction to the IVIG but recovered fast. We are very grateful that his original fever never seemed to re-occur and no infection was found. Likewise, we are grateful that he has been able to avoid the parainfluenza virus. But, wow -- will we be glad to see the end of the hospital! Expecting he will be outa there tomorrow.
Other than the hospital frustrations, Eric continues to do well. His blood counts are slowly rising (counts rise more slowly when marrow is used rather than peripheral stem cells) and the musositis has resolved itself. Nothing tastes good but he eats and drinks through the day. Tough to get enough calories in (especially with hospital food). It really paid off for him to be in such good shape with extra weight going into the transplant. Waiting to do this transplant was a good plan. I know that this would have been much harder last spring when he was still recuperating from chemo regimens and that infection.
That's it, that's all!
Sorry for the lack of updates - it's been a bit of a frustrating week. After Eric was admitted to the inpatient BMT ward last week with a fever, the parainfluenza virus that has been making the rounds at the hospital became a serious concern for several BMT patients. Of course any infection or virus is very serious (and potentially fatal) for those with a compromised immune system. As a result of the virus, the BMT program shut down their outpatient clinics and all transplant patients had to be either inpatient or well enough to be completely discharged to the regular weekly clinic follow up program. This change kept Eric in the hospital to complete his IV antibiotics...
I hate the idea that he is stuck in isolation on a ward where we know patients have come down with this virus. The hospital did a major re-organization of the ward to ensure those who were not struck by the virus had every isolation technique in play to avoid exposure. I am really not sure where those with the virus have gone -- but anyone who had any kind of a cough seems to have been moved - hoping that all are okay. Access to the floor has been severely limited (this is already a tightly controlled environment), additional staff brought in, there are enough masks, gloves, gowns and Purell to sink a ship and the tension permeates the entire floor. You get the picture -- it just hasn't been a very pleasant place to be....
They also gave him a dose of IVIG to provide some passive immunity. He had a nasty reaction to the IVIG but recovered fast. We are very grateful that his original fever never seemed to re-occur and no infection was found. Likewise, we are grateful that he has been able to avoid the parainfluenza virus. But, wow -- will we be glad to see the end of the hospital! Expecting he will be outa there tomorrow.
Other than the hospital frustrations, Eric continues to do well. His blood counts are slowly rising (counts rise more slowly when marrow is used rather than peripheral stem cells) and the musositis has resolved itself. Nothing tastes good but he eats and drinks through the day. Tough to get enough calories in (especially with hospital food). It really paid off for him to be in such good shape with extra weight going into the transplant. Waiting to do this transplant was a good plan. I know that this would have been much harder last spring when he was still recuperating from chemo regimens and that infection.
That's it, that's all!
Wednesday, 27 August 2008
What Would You Do If You Weren't Afraid?
This question was raised twice today and it got me thinking about risk taking and how risk can lead to growth and even excellence....
We are in the middle of the largest risk I personally can imagine. Yet Eric is doing great. He's doing great because many people before him were willing to take the risk of a bone marrow transplant. His doctor was willing to take the risk of performing bone marrow transplants 30 YEARS AGO. His donor took the risk of joining the bone marrow registry and then undergoing surgery to donate bone marrow for a stranger.
In my line of work, risk management is a daily routine. While a first reaction risk is often negative, many many risks have positive, even exciting outcomes because the risk is understood and managed. And where would our world be if we were all afraid to do what seems risky or impossible? I thank all who have faced a fear, taken a risk, designed strategies for risk management and learned how to make the impossible... possible.
We are in the middle of the largest risk I personally can imagine. Yet Eric is doing great. He's doing great because many people before him were willing to take the risk of a bone marrow transplant. His doctor was willing to take the risk of performing bone marrow transplants 30 YEARS AGO. His donor took the risk of joining the bone marrow registry and then undergoing surgery to donate bone marrow for a stranger.
In my line of work, risk management is a daily routine. While a first reaction risk is often negative, many many risks have positive, even exciting outcomes because the risk is understood and managed. And where would our world be if we were all afraid to do what seems risky or impossible? I thank all who have faced a fear, taken a risk, designed strategies for risk management and learned how to make the impossible... possible.
From Wikipedia...
Arete (Greek: ἀρετή; pronounced /ˈærəteɪ/ in English), in its basic sense, means "goodness", "excellence" or "virtue" of any kind. In its earliest appearance in Greek, this notion of excellence was bound up with the notion of the fulfillment of purpose or function; the act of living up to one's full potential.
I firmly believe that this transplant, and its accompanying risk, gives Eric the opportunity to live up to his full potential.
I enjoyed this video - hope you do too...Eric's Blood Counts Today
WBC 0.7
Hgb 106
Platelets 47
Hgb and Platelets have stayed stable without transfusions since Sunday! Yeah!!!!
Tuesday, 26 August 2008
We Like Boring!
It's been a boring few days -- and that is what everyone hopes for in the midst of a bone marrow transplant.
Eric remains in the hospital on round the clock IV antibiotics and the fever has not returned since Friday - yeah! His blood counts continue to rise and those new neutrophils are helping the sore mouth/throat/gut/bum heal. He is able to eat most foods althought nothing tastes good. His taste buds are gone as a result of the mucositis. They'll eventually be back but it makes for bland food for a while.
As long as things continue on this path, I expect he'll be back home as soon as the course of round the clock antibiotics is complete.
Thanks again to everyone for the cards, emails and prayers. You are all so kind.
Saturday, 23 August 2008
A Little Detour
Well, that little fever that Eric has had all week finally spiked last night and he was admitted to hospital to allow a different IV antibiotic (PIP/TAZ) to be added to his list of meds.
And in good news, his white counts continue to rise (very slooooowly) and he is feeling just a smidgen better. At least his voice is almost back and he is able to swallow small bites of solid food.
I am taking a break and visiting Cor and the poodles in Morrisburg - yes, I am at home! Hopefully Morgan is also getting a good night sleep tonight (she did the ER run last night)and enjoys the Stream Watch program tomorrow.
You have probably all noticed the lovely blonde that is frequently seen with Eric in his pics -- that is Morgan! Morgan is probably the very best medicine that Eric has in his favour -- she and her family have been incredibly supportive and Eric is a very lucky guy to have such a sweetie for a girlfriend.
And in good news, his white counts continue to rise (very slooooowly) and he is feeling just a smidgen better. At least his voice is almost back and he is able to swallow small bites of solid food.
I am taking a break and visiting Cor and the poodles in Morrisburg - yes, I am at home! Hopefully Morgan is also getting a good night sleep tonight (she did the ER run last night)and enjoys the Stream Watch program tomorrow.
You have probably all noticed the lovely blonde that is frequently seen with Eric in his pics -- that is Morgan! Morgan is probably the very best medicine that Eric has in his favour -- she and her family have been incredibly supportive and Eric is a very lucky guy to have such a sweetie for a girlfriend.
Saturday's Blood Counts
WBC 0.3
Hgb 79 (2 units today)
Platelets 27 (1 unit of single donor platelets today)
Thursday, 21 August 2008
Day + 13 WBC = 0.2!!
Yeah!!!! It's 13 days post transplant and today we saw the white blood count nudge up from 0.1 to 0.2! This is a good sign and is as early as we could have possibly hoped for.
White blood cells are the first cells to show up following transplant and we hope they quickly get to work to start to relieve Eric's mucositis .
Still a long path ahead, but this is certainly a glimmer of sunshine at the end of that tunnel!
edited.... because apparently I am challenged in counting to Day 13 and establishing the correct day of the week! Be glad I am not trying to manage projects while we manage this BMT!
White blood cells are the first cells to show up following transplant and we hope they quickly get to work to start to relieve Eric's mucositis .
Still a long path ahead, but this is certainly a glimmer of sunshine at the end of that tunnel!
Thursday's Blood Counts Day 13
WBC 0.2
Hgb 72 (got 2 units of RBCs today)
Platelets 42
edited.... because apparently I am challenged in counting to Day 13 and establishing the correct day of the week! Be glad I am not trying to manage projects while we manage this BMT!
Tuesday, 19 August 2008
Platelets Work Like Magic
Until recently I didn't think much about platelets - who does? I knew that they were a component of my blood and that they were responsible for clotting the blood. When I cut myself it didn't occur to me that my platelets would fail -- everytime, they rose to the challenge and the cut became a scab. My kids all fell off bikes, scraped their knees and elbows and played sports - every cut, scrape and nosebleed healed miraculously.
During a bone marrow transplant, platelet counts drop to critical levels. A normal count is 150–400 x 109/L. Yesterday morning Eric's platelets were 18. He has a standing order for platelet transfusion when they hit 10. So when he had a nosebleed late last night, we were very concerned. And sure enough, there were not enough platelets circulating, the nosebleed continued and we had to head in to the hospital for a unit of platelets. Here's where it works like magic... Within 15 minutes of the start of the platelet infusion, that nasty (yes, as bad as you imagine) noseblood suddenly stopped. The donated platelets had found their way to the bleed and went to work. Eric was back home and in bed within a couple of hours.
And there is more. As a transplant patient, Eric must receive single donor platelets. That means that a wonderful person spent a couple of hours hooked up to the apherisis machine sometime within the last 5 days and donated platelets. I understand that most major blood donation centers have the ability to collect platelet donations -- please consider helping this magic continue for everyone who needs blood products.
Did you know? (I didn't!)
- A bone marrow transplant patient may need up to 120 units of platelets.
- Your body will replace the donated platelets within 72 hours.
- If you meet the requirements for donating blood, you probably can give platelets.
- Because platelets can be stored for only five days, the need for platelet donations is vast and continuous.
During a bone marrow transplant, platelet counts drop to critical levels. A normal count is 150–400 x 109/L. Yesterday morning Eric's platelets were 18. He has a standing order for platelet transfusion when they hit 10. So when he had a nosebleed late last night, we were very concerned. And sure enough, there were not enough platelets circulating, the nosebleed continued and we had to head in to the hospital for a unit of platelets. Here's where it works like magic... Within 15 minutes of the start of the platelet infusion, that nasty (yes, as bad as you imagine) noseblood suddenly stopped. The donated platelets had found their way to the bleed and went to work. Eric was back home and in bed within a couple of hours.
And there is more. As a transplant patient, Eric must receive single donor platelets. That means that a wonderful person spent a couple of hours hooked up to the apherisis machine sometime within the last 5 days and donated platelets. I understand that most major blood donation centers have the ability to collect platelet donations -- please consider helping this magic continue for everyone who needs blood products.
Did you know? (I didn't!)
- A bone marrow transplant patient may need up to 120 units of platelets.
- Your body will replace the donated platelets within 72 hours.
- If you meet the requirements for donating blood, you probably can give platelets.
- Because platelets can be stored for only five days, the need for platelet donations is vast and continuous.
Monday's (Day 10) Blood Counts
WBC 0.1 (they don't report anything lower than this)
Hgb 89 / 81 after nosebleed and platelets
Platelets 18 / 34 after platelet transfusion
Sunday, 17 August 2008
A Long Day
Today started with a 38C fever at 3am.... Into to the hospital to start a broad spectrum antibiotic and blood cultures. Of course once there, the fever had disappeared. During the day he had a couple of more units of blood (in addition to 2 units of RBCs and one of platelets on Saturday). More antibiotics before we headed for home around noon. We both grabbed a pillow and a couch and napped and watched TV all afternoon.
The fever hovers between 37 - 38 and no signs of infection that anyone can find. So we'll continue with daily IV antibiotics and monitor as always. Other than a very sore mouth and throat, he's hanging in there - what a tough kid! A Fentanyl patch and some morphine helps somewhat - at least he can sleep and can still swallow pills, sip Boost, milkshakes, etc. Not a chance he'll be eating a hamburger today!
He's losing his hair again so shaved his head -- but is very itchy everywhere. I guess that is the hair dying and falling out.
The fever hovers between 37 - 38 and no signs of infection that anyone can find. So we'll continue with daily IV antibiotics and monitor as always. Other than a very sore mouth and throat, he's hanging in there - what a tough kid! A Fentanyl patch and some morphine helps somewhat - at least he can sleep and can still swallow pills, sip Boost, milkshakes, etc. Not a chance he'll be eating a hamburger today!
He's losing his hair again so shaved his head -- but is very itchy everywhere. I guess that is the hair dying and falling out.
Today's Counts
WBC 0.1
Hgb 79
Platelets 29
Friday, 15 August 2008
Change of Plans....
As there is a respiratory virus currently circulating in the hospital, the decision was made today to have Eric remain as an outpatient. Rationale being that, Eric is doing fine at home and increasing the time in the hospital increases the risk of catching this virus.
So he will continue on an outpatient basis and will be in isolation while in the day care unit.
Of course, all the outpatient guidelines regarding fever etc. remain in play. If he can't eat/drink or if he has a fever, he will be admitted.
We really didn't need any additional stress...
Expecting a couple of units of RBCs and platelets tomorrow.
So he will continue on an outpatient basis and will be in isolation while in the day care unit.
Of course, all the outpatient guidelines regarding fever etc. remain in play. If he can't eat/drink or if he has a fever, he will be admitted.
We really didn't need any additional stress...
Today's blood counts:
WBC 0.2
HgB 82
platelets 20
Expecting a couple of units of RBCs and platelets tomorrow.
Thursday, 14 August 2008
Amazed!
We continue to be amazed at how well Eric is doing. His counts are nearing rock bottom and his mouth and throat are more sore each day but he continues to eat and drink well and feels "okay".
While he would be comfortable remaining at home, the BMT team will admit him tomorrow so that they can keep very close tabs on him while he is neutropenic in case of fever/infection. This is not unexpected or unusual. If anything, it is unusual that he is still at home and doing well this far into the transplant schedule.
Thanks again to all for the calls, cards, emails and blog comments. It is appreciated more than you know.
While he would be comfortable remaining at home, the BMT team will admit him tomorrow so that they can keep very close tabs on him while he is neutropenic in case of fever/infection. This is not unexpected or unusual. If anything, it is unusual that he is still at home and doing well this far into the transplant schedule.
Thanks again to all for the calls, cards, emails and blog comments. It is appreciated more than you know.
Tuesday, 12 August 2008
Day +4????
Yes, that's right -- we have lost a day... No, no time travel! Because the transplant was late in the day on the Thursday, they count the Friday as Day 0. That means that today was day +4.
Eric is still visiting the outpatient BMT clinic daily - he hasn't felt the need to move to inpatient care yet. They check blood counts (still dropping each day) and give him fluids. Yesterday he also had another dose of methotrexate (one of the strategies to reduce GvHD). Sometimes there are changes in meds based on blood results or symptoms. A new drug to help with stomach issues was added today. Eric is feeling the effects - he has a sore mouth and is losing his taste buds. Nausea comes and goes.
He is still feeling well enough to request Harvey's for dinner tonight and go out for a walk with Morgan this evening.
We continue to focus on the current day. A transplant is a long process and while I like to know what to expect next, I stay away from guessing timelines or setting unrealistic expectations. Today was a good day and I know that we have the right teams aligned to keep the process moving in the right direction.
Have a great day everyone and give yourself a pat on the back if you are a blood donor!
Eric is still visiting the outpatient BMT clinic daily - he hasn't felt the need to move to inpatient care yet. They check blood counts (still dropping each day) and give him fluids. Yesterday he also had another dose of methotrexate (one of the strategies to reduce GvHD). Sometimes there are changes in meds based on blood results or symptoms. A new drug to help with stomach issues was added today. Eric is feeling the effects - he has a sore mouth and is losing his taste buds. Nausea comes and goes.
He is still feeling well enough to request Harvey's for dinner tonight and go out for a walk with Morgan this evening.
We continue to focus on the current day. A transplant is a long process and while I like to know what to expect next, I stay away from guessing timelines or setting unrealistic expectations. Today was a good day and I know that we have the right teams aligned to keep the process moving in the right direction.
Have a great day everyone and give yourself a pat on the back if you are a blood donor!
Sunday, 10 August 2008
Day +3
Hello! Everything seems to be going as expected. Eric is very tired (actually we are both napping alot). Yesterday wasn't a great day. He woke up with a headache that just wouldn't go away. Finally after a second dose of morphine and a good sleep, the headache and nausea subsided enough to have a bowl of soup and watch some of the Olympics.
Today the headache is gone and the nausea is a back under control. He had his first dose of methotrexate yesterday and will have another tomorrow.
Still outpatient and that has been really nice. Much nicer to be in your own bed and have the right snacks close by.
The morning in the outpatient area is just long enough to get some fluid (staying ahead of any potential hydration issues), blood tests and review Eric's current status and identify anything that will help him feel better.
The hardest days are yet to come - but we are going in the right direction, so we'll keep putting one foot in front of the other.
This can be a very lonely and scary journey. Thanks to all of you who have left comments of support and been in touch. It really means alot to both Eric and myself.
Kathy
Today the headache is gone and the nausea is a back under control. He had his first dose of methotrexate yesterday and will have another tomorrow.
Still outpatient and that has been really nice. Much nicer to be in your own bed and have the right snacks close by.
The morning in the outpatient area is just long enough to get some fluid (staying ahead of any potential hydration issues), blood tests and review Eric's current status and identify anything that will help him feel better.The hardest days are yet to come - but we are going in the right direction, so we'll keep putting one foot in front of the other.
This can be a very lonely and scary journey. Thanks to all of you who have left comments of support and been in touch. It really means alot to both Eric and myself.
Kathy
Friday, 8 August 2008
Day + 1
Without further ado or fanfare, the cells arrived as expected and were transfused by 6pm last night. Eric passed the time playing video games and having dinner.
Now we watch carefully and wait. Wait for Eric's old cells to die out (white counts and platelets are dropping daily) and then wait for the new marrow to begin to produce cells. This timeframe is one of the key risk points and all will carefully monitor blood counts, temperature, overall wellbeing, etc. Part of the reason that Eric will remain outpatient as long as possible is to reduce exposure to the serious germs in hospitals. Surprisingly, his doctors are far more concerned about the normal bateria in his body and the hospital environment than anything he will run into at home or outside. Of course, if you are sick -- have a cough, sore throat, cold -- STAY AWAY!!
Wednesday, 6 August 2008
So What Will Happen?
Tomorrow is transplant day. Eric is still well enough to be an outpatient so we are to be at the hospital for 9 tomorrow morning. He will have another session of plasma exchange to further lower the level of A antibodies in his blood. Today he went from 32 to 8 - the target number is 4 -- he should hit that tomorrow. During the plasma exchange, Eric's blood is circulated through an apherisis machine (like a centrifuge). The plasma is removed and all other blood components are returned to him with an artificial substance to replace the plasma. This process helps ensure that the A antibodies in his system are reduced so that they will not attempt to fight the donor's A- cells.
He will receive his new marrow sometime after 12 noon (48 hours after his last chemo treatment). No surgery or fancy process as with most transplants. The cells are administered like a blood transfusion; they then make their way to the bone marrow to start the engraftment process. And how long will engraftment take? Everyone is different. We hope that blood tests will show cells in about 3 weeks. Complete engraftment will take months.
The donor is anonymous. We hope that a year from now we will have the pleasure of meeting this most generous stranger (if both Eric and the donor wish to open the file). I remain in awe of all who have given such a gift and those who have volunteered to join the bone marrow registry. You have no idea what it means to us.
Interesting bit of info... the marrow will be delivered from the airport to the hospital by the RCMP (Royal Canadian Mounted Police). Apparently the BMT unit treated an RCMP member a while back and at that time, the local force chose to initiate the tradition of delivering the marrow. I trust they are using a cruiser and will not be on horseback!
Again, thanks to all for your prayers, positive thoughts and support.
He will receive his new marrow sometime after 12 noon (48 hours after his last chemo treatment). No surgery or fancy process as with most transplants. The cells are administered like a blood transfusion; they then make their way to the bone marrow to start the engraftment process. And how long will engraftment take? Everyone is different. We hope that blood tests will show cells in about 3 weeks. Complete engraftment will take months.
The donor is anonymous. We hope that a year from now we will have the pleasure of meeting this most generous stranger (if both Eric and the donor wish to open the file). I remain in awe of all who have given such a gift and those who have volunteered to join the bone marrow registry. You have no idea what it means to us.
Interesting bit of info... the marrow will be delivered from the airport to the hospital by the RCMP (Royal Canadian Mounted Police). Apparently the BMT unit treated an RCMP member a while back and at that time, the local force chose to initiate the tradition of delivering the marrow. I trust they are using a cruiser and will not be on horseback!
Again, thanks to all for your prayers, positive thoughts and support.
Tuesday, 5 August 2008
Last Chemo!
Eric finished his last high dose chemo today -- yes, the LAST CHEMO EVER. It started out as a bit of a rough day. I think I saw the nurses retreat to draw straws as Eric arrived carrying a bucket.... yeah... it was a bucket day.
It was a very long day but he's feeling much better tonight. We went for a walk to the beach and stopped at the Dairy Queen on the way back.
It was a very long day but he's feeling much better tonight. We went for a walk to the beach and stopped at the Dairy Queen on the way back.
Sunday, 3 August 2008
Day -4
Six down and two more chemos to go.... Eric is coping extremely well with both the Fludarabine and Busulfan chemo drugs. Busulfan is definitely harder and has several side effects for which he is taking additional medications. By the time he takes the anti-nausea meds, the anti-seizure meds, pills to protect his liver and another to protect his kidneys (AND the chemo), he just feels kinda blah....
By Tuesday the days will get longer. As chemo completes, he will have plasmapharesis to help prepare his system for his donor marrow (the plan is to remove his A antibodies as the donor is an A- blood type)He will also start ATG to help prevent or lessen GVHD (Graft vs Host Disease).
As always, positive thoughts and prayers most welcome.
By Tuesday the days will get longer. As chemo completes, he will have plasmapharesis to help prepare his system for his donor marrow (the plan is to remove his A antibodies as the donor is an A- blood type)He will also start ATG to help prevent or lessen GVHD (Graft vs Host Disease).
As always, positive thoughts and prayers most welcome.
Friday, 1 August 2008
Day -6
Eric had his fourth and final infusion of Fludarabine this morning. All is well -- these infusions are fast and he has been fortunate to have no side effects.
Tomorrow he starts the Busulfan as well as several drugs to help counter-act the more serious side effects of this chemo. The Busulfan is given over 3 hours so we will have longer stays in the Day Unit as well.
This week he has also had a chance to meet with the supporting members of the BMT team including the Pharmacist (Harry and Eric have become good friends!), the dietician and the social worker. While meeting with these people, I realized what a blessing it was that we could not proceed to a transplant earlier in the year. During this waiting period, Eric has been able to improve his health, figure out disability insurance and stabilize his finances. Through improved nutrition, he has put on a much needed 25 pounds, then added a few more so that he is entering his SCT with some padding! An Allo transplant is very hard on the body and mind. We are glad that Eric is in good shape to take on this challenge.
Tomorrow he starts the Busulfan as well as several drugs to help counter-act the more serious side effects of this chemo. The Busulfan is given over 3 hours so we will have longer stays in the Day Unit as well.
This week he has also had a chance to meet with the supporting members of the BMT team including the Pharmacist (Harry and Eric have become good friends!), the dietician and the social worker. While meeting with these people, I realized what a blessing it was that we could not proceed to a transplant earlier in the year. During this waiting period, Eric has been able to improve his health, figure out disability insurance and stabilize his finances. Through improved nutrition, he has put on a much needed 25 pounds, then added a few more so that he is entering his SCT with some padding! An Allo transplant is very hard on the body and mind. We are glad that Eric is in good shape to take on this challenge.
Thursday, 31 July 2008
Wondering What You Can Do?
Lots of people have asked how they can help...
A couple of suggestions:
- Eric will need lots of blood and platelet transfusions over the next few weeks. The blood supply is always at it's lowest mid-summer. If you can, please give blood. In Canada, call 1 888 2donate to book an appointment.
- He'll likely groan at me for this one.... But, Eric likes getting mail (yep - good ole fashioned snail mail). The MacLeod family will recognize his Grampy in that! Feel free to send a card, joke, magazine to him:
Eric Brule
320 Croydon Ave Apt 610
Ottawa ON
K2B 5P3
Thanks Everyone -- appreciate all your support!
A couple of suggestions:
- Eric will need lots of blood and platelet transfusions over the next few weeks. The blood supply is always at it's lowest mid-summer. If you can, please give blood. In Canada, call 1 888 2donate to book an appointment.
- He'll likely groan at me for this one.... But, Eric likes getting mail (yep - good ole fashioned snail mail). The MacLeod family will recognize his Grampy in that! Feel free to send a card, joke, magazine to him:
Eric Brule
320 Croydon Ave Apt 610
Ottawa ON
K2B 5P3
Thanks Everyone -- appreciate all your support!
Wednesday, 30 July 2008
Day -8 Done!
Another uneventful day... chemo early in the morning and then we had the rest of the day off. Loving the outpatient option!
Tuesday, 29 July 2008
Day - 9
Eric had his first infusion of conditioning chemo today (Fludarabine 30mg/m2 for you avid Googlers or PubMed afficionados). The purpose of this drug is to clean out his bone marrow and 'make room' for the donor marrow next week. This drug is not expected to have too many nasty side effects but Eric has a good supply of drugs to help counteract any minor nausea. Of course, any minor nausea could also be caused by the lunch at McDonalds.
As we expected, the chemo was quick but the paperwork was long and painful. The idea is that by completing all the admission work today, it will be quicker and simpler when/if Eric needs to stay as an overnight inpatient. I know Eric would love to complete this transplant outpatient, but Mom is sure glad there is a contingency plan in place...
That's it for today - may the next 6 weeks be similarly boring!
As we expected, the chemo was quick but the paperwork was long and painful. The idea is that by completing all the admission work today, it will be quicker and simpler when/if Eric needs to stay as an overnight inpatient. I know Eric would love to complete this transplant outpatient, but Mom is sure glad there is a contingency plan in place...
That's it for today - may the next 6 weeks be similarly boring!
Sunday, 27 July 2008
So, What Is Happening?
Over the past couple of months, there has been considerable testing of both Eric and his donor. The BMT team needs to know as much as possible about both so that they can orchestrate the transplant in such a way that Eric's body will accept the new marrow. Fortunately, we have a perfect match. A transplant using a matched unrelated donor is often referred to as a MUD transplant.
Eric is currently healthy -- his Hodgkins Lymphoma is as reduced as the doctor's can possibly tell. Eric's Hodgkins does not present with palpable lumps or any outward signal that it has returned. He has a couple of nodes in his abdomen that enlarge slightly (by millimeters) and then the Hodgkins seems to go right to his bone marrow. So the first indication of further relapse is low blood counts or weight loss. Currently those nodes are stable, his blood counts are high and he is at a great weight. All good signs to proceed to a transplant.
Eric will have what is called a mini or allo-lite or RIC (reduced intensity conditioning) Allogeneic transplant (or if you are googling it -- nonmyeloablative allogeneic stem cell transplant). The reduced intensity conditioning chemo reduces some of the risk around an allo transplant. Allo transplants are seldom utilized for Hodgkins due to this risk. There are no studies to support the suspicion that a mini-allo can exploit the host vs lymphoma effect -- meaning that the engrafted donor's marrow can fight any lingering Hodgkins cells.
No studies, does not mean it is not happening! Obviously, the risk around this procedure precludes random blind trials. What we know is that Eric is an excellent candidate, the match is great and we are working with the best team I could imagine.
Click to enlarge this diagram:
Eric is currently healthy -- his Hodgkins Lymphoma is as reduced as the doctor's can possibly tell. Eric's Hodgkins does not present with palpable lumps or any outward signal that it has returned. He has a couple of nodes in his abdomen that enlarge slightly (by millimeters) and then the Hodgkins seems to go right to his bone marrow. So the first indication of further relapse is low blood counts or weight loss. Currently those nodes are stable, his blood counts are high and he is at a great weight. All good signs to proceed to a transplant.
Eric will have what is called a mini or allo-lite or RIC (reduced intensity conditioning) Allogeneic transplant (or if you are googling it -- nonmyeloablative allogeneic stem cell transplant). The reduced intensity conditioning chemo reduces some of the risk around an allo transplant. Allo transplants are seldom utilized for Hodgkins due to this risk. There are no studies to support the suspicion that a mini-allo can exploit the host vs lymphoma effect -- meaning that the engrafted donor's marrow can fight any lingering Hodgkins cells.
No studies, does not mean it is not happening! Obviously, the risk around this procedure precludes random blind trials. What we know is that Eric is an excellent candidate, the match is great and we are working with the best team I could imagine.
Click to enlarge this diagram:
Friday, 25 July 2008
Deep Breath... Ready, Set, Go
We had a planning meeting today (yes, I know we seem to have had ALOT of those) with the BMT team and have a schedule in place for Eric's transplant. The countdown begins on Tuesday (Day -9) when he will start his conditioning chemo. Chemo continues through Day -2 and on Day 0 (Thursday Aug 7/08) he will receive his donor's marrow. Although he will be considered an inpatient, he will be allowed to remain at home with daily trips to the BMT clinic. When he gets to the point that he is too sick to want to get out of the hospital bed and go home, he will already have inpatient status so getting a bed will not be an issue. We like that approach, it gives him the best of both worlds. Outpatient transplants are not common but if the facilities can support the patient with that type of flexibility and a caregiver is available, most people do very well as a level of activity is maintained and the sheer boredom of a hospital room for several weeks is avoided.
We'll be updating the blog daily to keep you all up to date on how things go!
Blogging For Blood Cancer
Came across this nifty idea at this site .
The first annual “Blogging for Blood Cancer” event will take place from August 11-18, 2008. This first time event will bring bloggers from across the United States together to raise awareness for The Leukemia & Lymphoma Society and its mission to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.
Wednesday, 9 July 2008
Hello!!
Haven't posted because everything is great. Eric is feeling super and thoroughly enjoying summer. I'll post pics another time.
For now though, a break from Hodgkins... This YouTube video has to be one of the cutest things I have ever seen. Someone in this house will need to learn a lullabye before we get the next puppy! I'll give you a clue -- it won't be me!
Enjoy!
For now though, a break from Hodgkins... This YouTube video has to be one of the cutest things I have ever seen. Someone in this house will need to learn a lullabye before we get the next puppy! I'll give you a clue -- it won't be me!
Enjoy!
Wednesday, 18 June 2008
Canada joins California in cancer stem cell research, donates $100 million
One of the new realities for our family is that we have become advocates for cancer research and have a great interest in how stem cell research will benefit cancer treatments of the future. What great news to see the Canadian government contributing to this research.
http://www.macleans.ca/article.jsp?content=n061877A
http://www.macleans.ca/article.jsp?content=n061877A
Canada joins California in cancer stem cell research, donates $100 million
June 18, 2008 - 16:48
THE CANADIAN
PRESS
TORONTO - The Canadian government is investing more than $100 million into cancer stem cell research in partnership with California. Health Minister Tony Clement says the money will go to a consortium that co-ordinates and funds cancer stem cell research by both Canadian and Californian scientists, universities and private industry. Clement says the Cancer Stem Cell Consortium will work in partnership with the California Institute for Regenerative Medicine with the goal of learning to prevent and treat cancer.
The health minister made the announcement Wednesday at the BIO 2008 International Convention in San Diego. Clement says Canada and California together account for about 70 per cent of all stem cell research conducted in North America. The three-year agreement follows a recent pledge of $30 million by Ontario to the Cancer Stem Cell Consortium, created by Premier Dalton McGuinty and California Gov. Arnold Schwarzenegger.
Friday, 13 June 2008
We Have a Donor!
It was a very interesting appointment with Dr Huebsch yesterday. First, they do have a compatible donor for Eric. Second, Eric's disease burden remains very low. His scans look great, his blood counts are good and he continues to be healthy.
Unfortunately, even with the Hodgkins in check, his bone marrow is not healthy and this seems to be why they have not be able to collect stem cells for an auto transplant. They really don't know why his marrow is this bad. It could be from the Hodgkins or the chemo that has been used to kill the disease. While unlikely, it could even be a pre-existing or congenital condition. They have tested his marrow and ruled out leukemia, other lymphomas etc. The team has consulted and reviewed scientific data in depth and there is really no data to help make a decision on what will work for a 21 year old with Hodgkins and marrow this unhealthy. It's a puzzle that he is as healthy as he is.
It seems a certainty that the Hodge will return to the bone marrow unless we can get some healthy marrow in there. The hope is that healthy donor marrow will be able to attack any new Hodgkins cells that appear in the future. This is a new idea for Lymphoma and I have not been able to find studies proving the graft vs Lymphoma effect for Hodgkins. It is a known effect for Leukemia patients and who knows -- Eric may be part of the proof that there is a graft vs Lymphoma effect too.
So, we build on the good stuff. Eric is healthy and his disease is very sensitive to chemo. That's good. It means that we can get rid of the Hodgkins, but he needs help keeping the Hodgkins from returning. All agree that an allogeneic (donor) transplant gives Eric the best chance to kill this once and for all. We understand that this is a risky procedure (just as with any other organ transplant) and that our goal is not for good health in 2008 (recovery will be in phases) but for good health in 2010 and 2020.
The question is when the best time to do the transplant is. There is some work to do with the donor to better establish how to manage the risks of the transplant. The team wants to know as much as they can about the donor to best prepare Eric's body to accept the transplant. I was surprised to learn how individualized the preparation and risk management for an Allo transplant can be. We are likely looking at an August date for the transplant.
Once again I came away from this appointment with great respect for the knowledge and experience that this BMT team has. I can't tell you how important it is to understand their level of experience and have confidence in that.
So, we have time to enjoy summer! Eric is strong, happy and we all know that he can take this on and win!
Friday, 6 June 2008
Still Feeling Great!
Yup - Eric continues to feel great and we continue to enjoy some time off from dealing with Hodgkins. This weekend we (Cor, Eric, Morgan and I) are off to Guelph to visit with Shelley and Dave and then to the Toronto Zoo on Sunday. Should be a fun weekend.
Eric has an appointment next Thursday -- I guess they either have a donor lined up or are still looking and just want to check in on him.
That's it, that's all! Thanks again to everyone for your support.
Eric has an appointment next Thursday -- I guess they either have a donor lined up or are still looking and just want to check in on him.
That's it, that's all! Thanks again to everyone for your support.
Saturday, 17 May 2008
Living Life
We have had beautiful Spring weather for the past couple of weeks and we have all enjoyed it tremendously. With the BMT team busy working behind the scenes, it has been great for Eric to have a break and live life without chemo or neupogen shots or multiple weekly appointments.
Eric is still doing great; feeling good and ready to get this transplant done!
ODSP has approved his disability claim and that will certainly relieve some of the financial stress and worry. And to hand out kudos when they are due, ODSP and Ontario Works have been very helpful and prompt in their applications process and approvals. I had heard of and read about many, many complaints regarding ODSP, their slow response times, need for multiple appeals etc. None of that happened. The doctors provided all information that was requested, Eric completed the paperwork in a timely manner and then ODSP reviewed and approved within the expected timeframe. Eric truly needs this support and the bureaucracy worked as it should for him.
Finally, I want to thank all of you who have joined OneMatch or donated blood. Remember, joining OneMatch is easy. You do not need an appointment - it's an online form, a phone call from a nurse and then mailing back a couple of cheek swabs. It literally takes only minutes. There is no cost. You can save a life.
Eric is still doing great; feeling good and ready to get this transplant done!
ODSP has approved his disability claim and that will certainly relieve some of the financial stress and worry. And to hand out kudos when they are due, ODSP and Ontario Works have been very helpful and prompt in their applications process and approvals. I had heard of and read about many, many complaints regarding ODSP, their slow response times, need for multiple appeals etc. None of that happened. The doctors provided all information that was requested, Eric completed the paperwork in a timely manner and then ODSP reviewed and approved within the expected timeframe. Eric truly needs this support and the bureaucracy worked as it should for him.
Finally, I want to thank all of you who have joined OneMatch or donated blood. Remember, joining OneMatch is easy. You do not need an appointment - it's an online form, a phone call from a nurse and then mailing back a couple of cheek swabs. It literally takes only minutes. There is no cost. You can save a life.
Monday, 5 May 2008
Opening a Window Somewhere?
Have you ever heard the saying, “When God closes a door, he opens a window”? This refers to the belief that whether outcomes be good or bad, another opportunity will present itself.
The bone marrow harvest did not provide adequate stem cells to consider an autologous transplant. After 3 separate attempts to collect stem cells including multiple chemo protocols, hundreds of neupogen injections and finally surgery, we need to close this door and look for a window.
Potential donors are being identified to find the best match for Eric.
As we know more I will update this blog. In the meantime, if you or your family and friends are eligible to join the Bone Marrow Donor Registry, please do so.
In Canada, the registry is OneMatch . Joining is free and it is as simple as a questionaire and cheek swabs -- you don't have to make an appointment or provide a blood sample to join. If I can do it, you can do it too.
In the US, the Thanks Mom campaign is now active. This means you can join the registry between May 5 - May 19 for no cost.
We would be honoured if you would join on Eric's behalf.
The bone marrow harvest did not provide adequate stem cells to consider an autologous transplant. After 3 separate attempts to collect stem cells including multiple chemo protocols, hundreds of neupogen injections and finally surgery, we need to close this door and look for a window.
Potential donors are being identified to find the best match for Eric.
As we know more I will update this blog. In the meantime, if you or your family and friends are eligible to join the Bone Marrow Donor Registry, please do so.
In Canada, the registry is OneMatch . Joining is free and it is as simple as a questionaire and cheek swabs -- you don't have to make an appointment or provide a blood sample to join. If I can do it, you can do it too.
In the US, the Thanks Mom campaign is now active. This means you can join the registry between May 5 - May 19 for no cost.
We would be honoured if you would join on Eric's behalf.
Friday, 2 May 2008
Thursday, 1 May 2008
Marrow Harvest
Eric's surgery went fine - he is back home feeling like he has has his butt kicked hard!
We won't know until tomorrow if they were able to collect sufficient cells to proceed with an auto transplant.
We won't know until tomorrow if they were able to collect sufficient cells to proceed with an auto transplant.
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