Moved into new apartment with cute girlfriend, started summer semester, practicing swing at driving range, golfing, camping... That's Eric's life 5 months post transplant. We are amazed and grateful and enjoying life.
Sometimes this past year seems completely surreal. An anonymous donor stepped up and saved Eric's life - twice. A skillful and caring BMT team never stopped trying and never let us down. Over a hundred days in the hospital, countless blood and platelet transfusions (thank you to all those donors too), endless blood draws, chemo, chemo and more chemo.... And we have our miracle.
A great story in today's Ottawa Sun relates how another anonymous group of strangers makes sure that bone marrow transplants work.
Have Marrow, Will Travel
I wonder who made sure that Eric's new marrow arrived safe and sound?
Happy Mother's Day to all the Moms out there. Enjoy every day - make it all count!
Showing posts with label Hodgkins. Show all posts
Showing posts with label Hodgkins. Show all posts
Sunday, 10 May 2009
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, 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.
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!
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!
Saturday, 2 February 2008
What's Next
Starting this blog to help keep everyone up to date on Eric's stem cell transplant.
To back up a bit, Eric was diagnosed with Hodgkins Lymphoma in August 2006. He received 6 cycles of ABVD and went into remission. In December 2007, a routine CT scan showed enlarged lymph nodes in his abdomen and suspicious spots in his spleen. He had relapsed. He has taken this semester off from the University of Ottawa and has quit his part time job to focus on getting better.
Plan now is to prepare for an autologous stem cell transplant but we have a detour in the plan.
Eric received a chemo cocktail named DHAP Jan 4 -5. This is a much stronger drug combination than ABVD and the side effects hit fast and furious. Severe nausea was brought under control within a few days but re-hydrating continued to be difficult. By Jan 10, Eric was in hospital (out patient) receiving fluids and running a mild fever. As neutropenia is a serious risk with most chemotherapy, a fever is worrisome. He was finally admitted Jan 12 and started on IV antibiotics. Blood cultures later confirmed bacteria in his bloodstream and CT scans and MRIs illustrated advanced cellulitis and an abscess near his colon. Typical response would have been immediate surgery but with white blood counts continuing to fall, surgery was out of the question.
Eric had several units of whole blood and platelets, the IV antibiotic was changed to Vancomycin and neupogen shots continued while we waited for his white counts to rise enough to drain the abscess. Sure am glad that so many people give blood regularly. It is a real eye opener to see the amount of blood that is needed when you sit around a hematology ward for awhile.
Minor surgery on Jan 21 relieved most of the pain, his fever disappeared and Eric was able to be discharged on Jan 23. He continued IV Vancomycin and Ertopenen as a daily out patient for another week.
So where does that leave us?
At this point, more chemo is too risky as that darn abscess could flare up again when Eric's white counts drop. Dr Huebsch (new hemotologist who leads the Bone Marrow Transplant team at the Ottawa General Hospital) has suggested that we try to harvest stem cells very quickly while Eric's blood counts are good. Because Eric's blood counts have always reacted very strongly to chemo, there is concern that too much chemo will prevent us from collecting enough stem cells for the transplant. Significant is that there are limited apharesis machine (to collect stem cells) and this change in plans for Eric will mean a reschedule for another patient. His case goes to the team review on Monday so we will know more next week as far as the final plan and dates.
So it means we have a weekend off!! We really need to re-celebrate Eric's birthday while he is feeling so good! Poor guy had to have his Senator's birthday cake in the hospital...
To back up a bit, Eric was diagnosed with Hodgkins Lymphoma in August 2006. He received 6 cycles of ABVD and went into remission. In December 2007, a routine CT scan showed enlarged lymph nodes in his abdomen and suspicious spots in his spleen. He had relapsed. He has taken this semester off from the University of Ottawa and has quit his part time job to focus on getting better.
Plan now is to prepare for an autologous stem cell transplant but we have a detour in the plan.
Eric received a chemo cocktail named DHAP Jan 4 -5. This is a much stronger drug combination than ABVD and the side effects hit fast and furious. Severe nausea was brought under control within a few days but re-hydrating continued to be difficult. By Jan 10, Eric was in hospital (out patient) receiving fluids and running a mild fever. As neutropenia is a serious risk with most chemotherapy, a fever is worrisome. He was finally admitted Jan 12 and started on IV antibiotics. Blood cultures later confirmed bacteria in his bloodstream and CT scans and MRIs illustrated advanced cellulitis and an abscess near his colon. Typical response would have been immediate surgery but with white blood counts continuing to fall, surgery was out of the question.
Eric had several units of whole blood and platelets, the IV antibiotic was changed to Vancomycin and neupogen shots continued while we waited for his white counts to rise enough to drain the abscess. Sure am glad that so many people give blood regularly. It is a real eye opener to see the amount of blood that is needed when you sit around a hematology ward for awhile.
Minor surgery on Jan 21 relieved most of the pain, his fever disappeared and Eric was able to be discharged on Jan 23. He continued IV Vancomycin and Ertopenen as a daily out patient for another week.
So where does that leave us?
At this point, more chemo is too risky as that darn abscess could flare up again when Eric's white counts drop. Dr Huebsch (new hemotologist who leads the Bone Marrow Transplant team at the Ottawa General Hospital) has suggested that we try to harvest stem cells very quickly while Eric's blood counts are good. Because Eric's blood counts have always reacted very strongly to chemo, there is concern that too much chemo will prevent us from collecting enough stem cells for the transplant. Significant is that there are limited apharesis machine (to collect stem cells) and this change in plans for Eric will mean a reschedule for another patient. His case goes to the team review on Monday so we will know more next week as far as the final plan and dates.
So it means we have a weekend off!! We really need to re-celebrate Eric's birthday while he is feeling so good! Poor guy had to have his Senator's birthday cake in the hospital...
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