This past weekend, I had looked around for Sens tickets for Eric (the world's biggest Sens fan!) and Morgan for last night's game against the Leafs.... Whew, glad that didn't pan out! A 5-0 loss to the Leafs is disappointing enough on TV!
Tuesday, 26 February 2008
Sunday, 24 February 2008
Okay, Eric needs to catch a break....
It was a very frustrating and disappointing week. Eric was up and at the hospital for 7:30 AM Tuesday, Wednesday and Thursday. Each day they drew blood for testing in hopes that there would be sufficient stem cells to collect. Nothing on Tuesday, some on Wednesday, but not enough to collect and back to nothing on Thursday. So, back to the drawing board....
Eric has a scan next Wednesday to determine the status of his nodes as well as the state of the abscess. We hope that the abscess is sufficiently healed that he can get another round of chemo. Stem cell mobilization is usually helped by chemo so that may give him another chance to collect stem cells. In Eric's case there has been an ongoing risk/benefit analysis as to whether more chemo will help or hinder the stem cell collection combined with the risk of having that infection flare up while he is neutropenic following chemo.
They have also started the process to type Shelley and Zach's blood to see if either could potentially be a donor for Eric. Obviously an Allo transplant has more risk, so we are still hoping and praying for a successful collection following some more chemo.
We probably won't have a new plan in place for a couple of weeks. While it's good to have some time off from the hospital, I think we all just want to get this moving so it will be over with. Fortunately, Eric is feeling well physically and his blood counts are all good (and improving).
Eric is also trying to get set up for disability. Most of us would never realize how difficult THAT is... There are many programs in place for those of us who have been in the workforce for a while and there are lots of supportive programs for kids who are seriously ill. Young adults who have not been employed full time are left out in the cold. Eric has not worked enough to qualify for Employment Insurance, he lost his University scholarships and OSAP because he cannot attend classes and, while the Ontario Disability program looks promising, they have yet to answer their phones. He has been able to make an appointment with Ontario Works and will hopefully get into the disability approval process that way.
Looking forward to a better week!
Eric has a scan next Wednesday to determine the status of his nodes as well as the state of the abscess. We hope that the abscess is sufficiently healed that he can get another round of chemo. Stem cell mobilization is usually helped by chemo so that may give him another chance to collect stem cells. In Eric's case there has been an ongoing risk/benefit analysis as to whether more chemo will help or hinder the stem cell collection combined with the risk of having that infection flare up while he is neutropenic following chemo.
They have also started the process to type Shelley and Zach's blood to see if either could potentially be a donor for Eric. Obviously an Allo transplant has more risk, so we are still hoping and praying for a successful collection following some more chemo.
We probably won't have a new plan in place for a couple of weeks. While it's good to have some time off from the hospital, I think we all just want to get this moving so it will be over with. Fortunately, Eric is feeling well physically and his blood counts are all good (and improving).
Eric is also trying to get set up for disability. Most of us would never realize how difficult THAT is... There are many programs in place for those of us who have been in the workforce for a while and there are lots of supportive programs for kids who are seriously ill. Young adults who have not been employed full time are left out in the cold. Eric has not worked enough to qualify for Employment Insurance, he lost his University scholarships and OSAP because he cannot attend classes and, while the Ontario Disability program looks promising, they have yet to answer their phones. He has been able to make an appointment with Ontario Works and will hopefully get into the disability approval process that way.
Looking forward to a better week!
Sunday, 17 February 2008
Pain in the A$$
That darn PITA is back... the abscess from hell just won't seem to go away. Eric was in the hospital yesterday because his butt is sore again. Dr Faught was on and he was happy to see a doctor he knows well. No way of knowing how bad the abscess still is -- they need to get another MRI done. It is nowhere near as bad as it was last month -- and his white counts are good right now. So, they gave him some IV antibiotics (as long as he was there anyway, why not?) and sent him home with a couple of prescriptions. Hopefully that fixes it once and for all.
He's taking his Neupogen shots again and has some bone pain from that -- nothing too bad, he just knows it's there. He gets huge doses daily split into two shots that he gives himself in the stomach. The neopogen stimulates his bone marrow to make more cells and when the bones are overly full (that's what causes the pain), the marrow will release stem cells into the blood stream. Hopefully they will be able to collect those stem cells starting on Tuesday.
He's taking his Neupogen shots again and has some bone pain from that -- nothing too bad, he just knows it's there. He gets huge doses daily split into two shots that he gives himself in the stomach. The neopogen stimulates his bone marrow to make more cells and when the bones are overly full (that's what causes the pain), the marrow will release stem cells into the blood stream. Hopefully they will be able to collect those stem cells starting on Tuesday.
Friday, 15 February 2008
Getting Ready for Collection
We had a planning session with the Bone Marrow Transplant team yesterday. Eric's schedule for collection was confirmed and he took home his Neupogen and syringes. He'll give himself Neupogen shots everyday and we go back early Tuesday for bloodwork. If the bloodwork shows sufficient stem cells already circulating, they will start harvesting on Tuesday. He has appointments Tuesday, Wednesday and Thursday of next week for collection.
Another MRI will be scheduled for the end of February. Two goals - first they want to check those lymph nodes and see what impact the DHAP has had. Second they want to see the status of the abscess. When they know more about both the nodes and the abscess, they will decide whether to proceed with additional chemo or to go directly to high dose chemo and the transplant. Seems like we are always waiting for more information!
Another MRI will be scheduled for the end of February. Two goals - first they want to check those lymph nodes and see what impact the DHAP has had. Second they want to see the status of the abscess. When they know more about both the nodes and the abscess, they will decide whether to proceed with additional chemo or to go directly to high dose chemo and the transplant. Seems like we are always waiting for more information!
Saturday, 9 February 2008
Don't Know What's Going On....
Eric had a mild fever that has been on and off since Wednesday evening. Went into the BMT clinic yesterday - of course he had no fever then - I think he was 36.5. Anyway, they drew blood and sent it off to see if they can grow any more cultures. As he had a very full round of antibiotics due to the abscess (10 days of PipTaz, Vancomycin and Ertopenen), they don't think that this is related to that. And he feels fine.
So, all is well until last night when he spiked a fever of 38.7. He called the Hematologist on Call -- NO ANSWER! Still feeling fine so he went to bed. Talked to him this morning and he feels fine and his temp is sitting at 37.
Obviously we need to sort out how to get in touch with the BMT team.
Anyway, he has a schedule for his stem cell collection. Expect to start Neupogen late next week and collect cells Feb 19 - 21. Woohoo -- finally a plan starting to take shape.
So, all is well until last night when he spiked a fever of 38.7. He called the Hematologist on Call -- NO ANSWER! Still feeling fine so he went to bed. Talked to him this morning and he feels fine and his temp is sitting at 37.
Obviously we need to sort out how to get in touch with the BMT team.
Anyway, he has a schedule for his stem cell collection. Expect to start Neupogen late next week and collect cells Feb 19 - 21. Woohoo -- finally a plan starting to take shape.
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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