Although all of Eric's blood counts have now risen following chemo and 12 + days of Neupogen (growth factor), there are no stem cells available to collect.
The BMT team will now look at alternatives -- there is more than one way to get stem cells.
If you or someone you know has ever considered registering with the National Bone Marrow Registry (USA) or OneMatch (Canada), please do so.
While we don't know yet if Eric will need a donor (we do know that his siblings are not a match), these past months have given us a whole new awareness of the importance of our bone marrow registries. On any given day, the doctors of more than 6,000 children and adults are searching the NMDP Registry for a life-saving donor.
Please register. You could save a life.
Monday, 31 March 2008
Saturday, 29 March 2008
We Wait
In spite of chemo and 10 days of high dose neupogen, the stem cells have not appeared.
We don't know why this hasn't worked or if it will. On Monday we'll go in again early in the morning for a blood draw. Each day this week, Canadian Blood Services has performed a 'CD34' blood test. Each day, we go in early in the morning for a blood draw and then the blood is sent by courier to Canadian Blood Services. We hope for a high result that is indicative of high levels of stem cells in his blood. So far, the results have sent us back home each day.
Yes, I guess we are all a bit discouraged. We'll see what Monday brings.
We don't know why this hasn't worked or if it will. On Monday we'll go in again early in the morning for a blood draw. Each day this week, Canadian Blood Services has performed a 'CD34' blood test. Each day, we go in early in the morning for a blood draw and then the blood is sent by courier to Canadian Blood Services. We hope for a high result that is indicative of high levels of stem cells in his blood. So far, the results have sent us back home each day.
Yes, I guess we are all a bit discouraged. We'll see what Monday brings.
Wednesday, 26 March 2008
Not Yet
No stem cells ready today -- all Eric's blood counts are low so today he was treated to a couple of units of blood and a unit of platelets.
Again -- so many many thanks to those of you who are blood donors.
I just noticed on the Canadian Blood Services website that there is an immediate need for O- blood.... yep, that would be Eric!
Again -- so many many thanks to those of you who are blood donors.
I just noticed on the Canadian Blood Services website that there is an immediate need for O- blood.... yep, that would be Eric!
Sunday, 23 March 2008
Stem Cells This Week
This week is another chance to collect stem cells. Eric had ICE chemotherapy last week and it went alright for him. He's been giving himself 2 shots of neupogen daily to force stem cell production. With luck, his marrow will become over-run with stem cells and they will be forced into his blood stream for collection Wed - Fri of this week.
So what is different this time? This protocol uses both the chemotherapy effects combined with 8 -10 days of neupogen. On his last attempt to collect cells, we only had 5 - 6 days of neupogen and any help that the January DHAP chemo could have offered had long worn off (remember, that infection got in the way...).
Eric and Morgan and Shelley and Dave were here for Easter. Zach was working all weekend so he gets all the leftover ham and scalloped potatoes! Eric and Morgan are having another dinner tonight with Morgan's family. One of the side effects of Eric's chemo from last week appears to be a voracious appetite. I suspect the steroids have left him hungry! Anyway, it's a pleasure to see him eating well.
Shelley is busy training for this May's marathon and she had plans to run 23 KM today. OUCH! I can't imagine being able to do that! Kudos to Shelley -- she is challenging her supporters to donate blood in recognition of her marathon. As Eric has needed many many transfusions of both whole blood and platelets, we are always grateful to grab any opportunity to encourage everyone to give blood if they can.
Did you know?
So what is different this time? This protocol uses both the chemotherapy effects combined with 8 -10 days of neupogen. On his last attempt to collect cells, we only had 5 - 6 days of neupogen and any help that the January DHAP chemo could have offered had long worn off (remember, that infection got in the way...).
Eric and Morgan and Shelley and Dave were here for Easter. Zach was working all weekend so he gets all the leftover ham and scalloped potatoes! Eric and Morgan are having another dinner tonight with Morgan's family. One of the side effects of Eric's chemo from last week appears to be a voracious appetite. I suspect the steroids have left him hungry! Anyway, it's a pleasure to see him eating well.
Shelley is busy training for this May's marathon and she had plans to run 23 KM today. OUCH! I can't imagine being able to do that! Kudos to Shelley -- she is challenging her supporters to donate blood in recognition of her marathon. As Eric has needed many many transfusions of both whole blood and platelets, we are always grateful to grab any opportunity to encourage everyone to give blood if they can.
Did you know?
- Approximately every minute of every day, someone in Canada needs blood.
- In fact, according to a recent poll, 52 per cent of Canadians say they, or a family member, have needed blood or blood products for surgery or for medical treatment.
- The good news is that one blood donation - in just one hour - can save up to three lives.
- Be honoured that you have taken a life-saving action.
- Your donation will help up to three people, and may be used up in just 48hrs.
- Call 1-888-2-DONATE to book your appointment at your local blood clinic.
Monday, 17 March 2008
Back Home!
Eric got out for good behaviour and is back home safe and sound! He is feeling 'okay' -- I don't think he'll be out partying for St Patrick's Day or anything, but he is feeling okay. And after the horrendous experience with the last round of chemo, we are all eager for him to keep feeling okay.
He will be on anti-'pain-in-the-ass'-biotics this week to help curb any re-occurrance of the infamous abscess. Tomorrow he will start giving himself daily neupogen injections to force those baby cells to be created and mobilized. His job now is to look after himself and grow stem cells!
Next week he will head back into the 5th floor medical day care unit for daily blood tests until they confirm that his stem cells are ready for collection. We need all your prayers, positive thoughts, good vibes, etc. -- we'll take it all. The stem cell collection has to work! Thanks everyone.
He will be on anti-'pain-in-the-ass'-biotics this week to help curb any re-occurrance of the infamous abscess. Tomorrow he will start giving himself daily neupogen injections to force those baby cells to be created and mobilized. His job now is to look after himself and grow stem cells!
Next week he will head back into the 5th floor medical day care unit for daily blood tests until they confirm that his stem cells are ready for collection. We need all your prayers, positive thoughts, good vibes, etc. -- we'll take it all. The stem cell collection has to work! Thanks everyone.
Sunday, 16 March 2008
Another Uneventful Day
Eric completed ICE today! He will have Mesna (IV) for another 24 hours to further protect his kidneys and bladder from the impacts of the Ifosfamide.
He is doing great -- tired, but, hey -- what else is there to do in the hospital but sleep?
We still expect him to come home tomorrow and pray that this course of chemo continues to be uneventful.
He is doing great -- tired, but, hey -- what else is there to do in the hospital but sleep?
We still expect him to come home tomorrow and pray that this course of chemo continues to be uneventful.
Saturday, 15 March 2008
ICE
Eric is on day 2 of his ICE chemo regimen and so far all is going well. He was admitted into the hospital today and will stay until Monday. They expect tomorrow, Monday and Tuesday to be the toughest days and then again next weekend when his counts bottom out.
Ironically, his blood counts now are completely normal -- we'd really like to think that the DHAP in January (the chemo that started all the problems) has at least killed off some the Hodge...
Will update again tomorrow.
Ironically, his blood counts now are completely normal -- we'd really like to think that the DHAP in January (the chemo that started all the problems) has at least killed off some the Hodge...
Will update again tomorrow.
Thursday, 13 March 2008
More Chemo
Perspective is a funny thing -- who would ever think that we would be thrilled today to learn that chemo is scheduled for this weekend? Eric will be an out patient tomorrow for one infusion (Etoposide) and then will be admitted Sat - Mon for infusions of Carboplatin, Ifsofamide and more Etoposide. This is a chemo regimen called ICE and is commonly used in other SCT centers. It is not a common protocol in Ottawa but is being used for Eric because it has excellent results in helping to stimulate (and then mobilize) stem cells. It has all the usual side effects and his doctors continue to be concerned that the infection will return following chemo when his white counts drop -- we'll be watching for it.
Following the chemo, Eric will go on 8 - 10 days of Neupogen and then we will attempt to harvest stem cells again.
We asked why he was only getting one cycle of ICE prior to collecting stem cells -- there is concern that chemo is doing too much damage and impacting successful collection of stem cells. So, we are hoping and praying that we have stem cells safe and sound in the free
zer by the end of the month.
And the Senators are leading at the end of the 1st period!
Following the chemo, Eric will go on 8 - 10 days of Neupogen and then we will attempt to harvest stem cells again.
We asked why he was only getting one cycle of ICE prior to collecting stem cells -- there is concern that chemo is doing too much damage and impacting successful collection of stem cells. So, we are hoping and praying that we have stem cells safe and sound in the free
zer by the end of the month.And the Senators are leading at the end of the 1st period!
A Plan in the Works?
The BMT clinic called and moved Eric's appointment up to today. This will be another 'planning' meeting (yes, this is the 3rd planning meeting -- third time's the charm?).
Hopefully this means they have all their test results back and have a chemo and SCT schedule for him. We'll know more later today.
Hopefully this means they have all their test results back and have a chemo and SCT schedule for him. We'll know more later today.
Saturday, 8 March 2008
Some Time Off
We have a week off from tests and doctor appointments. It's a welcome break from that whole circus but I think the underlying feeling for all of us is that we want to get this over with.
Actually, 'getting this over with' is the buzz on the streets of Ottawa lately. But in tha
t case the common enemy is snow and winter. Mother Nature is chuckling as she continues to dump snow on this part of Canada. This winter's accumulation is now over 400 cms (and for those of you state-side, that really is over 13 feet of snow!). We are now heading for a new record. This weekend we are forecast to receive 40 -50 more cms! The poodles love the snow, but if this keeps up, they will be walking over the fence!
t case the common enemy is snow and winter. Mother Nature is chuckling as she continues to dump snow on this part of Canada. This winter's accumulation is now over 400 cms (and for those of you state-side, that really is over 13 feet of snow!). We are now heading for a new record. This weekend we are forecast to receive 40 -50 more cms! The poodles love the snow, but if this keeps up, they will be walking over the fence!Monday, 3 March 2008
Priorities and Wait Times
Yahoo! Eric has an appointment for an MRI on Wednesday at 9am! My faith in the Ontario health care system has been somewhat restored.
The wait time for an MRI in Ottawa is sitting at 341 days today, but clearly the system looks at prioritizing patients and needs. As a 21 year-old needing a bone marrow transplant, I had expected that Eric would be high on the priority list - and it seems that is, indeed, the case.
We have been intimately involved with the Ontario Health Care system over the past 2 years and in spite of all the horror stories we hear reported, this is the first time that I felt the system may be having a negative impact on Eric's quality of care.
I am obviously relieved that long wait times will not impact Eric. But a 341 day wait time (Ontario has set the target wait time at 28 days) for an MRI in Ottawa is still unacceptable.
The wait time for an MRI in Ottawa is sitting at 341 days today, but clearly the system looks at prioritizing patients and needs. As a 21 year-old needing a bone marrow transplant, I had expected that Eric would be high on the priority list - and it seems that is, indeed, the case.
We have been intimately involved with the Ontario Health Care system over the past 2 years and in spite of all the horror stories we hear reported, this is the first time that I felt the system may be having a negative impact on Eric's quality of care.
I am obviously relieved that long wait times will not impact Eric. But a 341 day wait time (Ontario has set the target wait time at 28 days) for an MRI in Ottawa is still unacceptable.
Sunday, 2 March 2008
Thinking Positive
This whole 'two steps forward and three steps back' situation we have been in since the start of the year has been frustrating to say the least.
BUT -- on Friday we had a very positive meeting with Ontario Works and ODSP (Ontario Disablity). They approved Eric immediately for Ontario Works and started the paperwork for ODSP. This will relieve some of the financial pressure - but as significant, it was actually a positive outcome. Those positives have been in short supply so we are very appreciative of the smallest success.
We have decided that Feb 29 was the official turning point and that everything is now focused on positive outcomes -- Eric quickly reminded me that this turning point had to include the Senators -- and yes, they finally managed to pull off a win against Pittsburg yesterday!
In other news, Zach has been into the General for his blood tests and Shelley is visiting the 5th Floor today to get her blood drawn. Not sure how long it takes to do the tissue matching...
Eric had a CT scan on Wednesday so we expect to hear from the BMT team next week as far as the status of that lingering abscess and some next steps. I have a sneaking suspicion that he is one of the thousands of people on that horrendous 277 day long MRI waiting list that is plaguing Ottawa. Oh look -- I just ran Ottawa through the Ontario Wait Times website and we are now up to 341 days. Not acceptable. Hopefully the CT scan will give us the all clear to start more chemo.
Tomorrow is Zach's birthday -- Happy 23 Zach! Shelley and Dave made a quick trip up this weekend so we all went out for dinner last night. Lone Star was yummy as always!
That's it, that's all -- as always many many thanks for all your prayers and positive thoughts
BUT -- on Friday we had a very positive meeting with Ontario Works and ODSP (Ontario Disablity). They approved Eric immediately for Ontario Works and started the paperwork for ODSP. This will relieve some of the financial pressure - but as significant, it was actually a positive outcome. Those positives have been in short supply so we are very appreciative of the smallest success.
We have decided that Feb 29 was the official turning point and that everything is now focused on positive outcomes -- Eric quickly reminded me that this turning point had to include the Senators -- and yes, they finally managed to pull off a win against Pittsburg yesterday!
In other news, Zach has been into the General for his blood tests and Shelley is visiting the 5th Floor today to get her blood drawn. Not sure how long it takes to do the tissue matching...
Eric had a CT scan on Wednesday so we expect to hear from the BMT team next week as far as the status of that lingering abscess and some next steps. I have a sneaking suspicion that he is one of the thousands of people on that horrendous 277 day long MRI waiting list that is plaguing Ottawa. Oh look -- I just ran Ottawa through the Ontario Wait Times website and we are now up to 341 days. Not acceptable. Hopefully the CT scan will give us the all clear to start more chemo.
Tomorrow is Zach's birthday -- Happy 23 Zach! Shelley and Dave made a quick trip up this weekend so we all went out for dinner last night. Lone Star was yummy as always!
That's it, that's all -- as always many many thanks for all your prayers and positive thoughts
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