Winter birthdays abound in our family. December is Shelley, January is Eric (his original birthday, he also has August and December now too), February is Dave (Shelley's husband), March is Zach and April is Morgan. So tonight we are going out for our big family birthday dinner.
Eric continues to truck along - we remain cautiously optomistic that the graft is settling down and holding tight. He is off (meaning no hospital visits) now until Tuesday when we return for some additional testing and expect to get results of yesterday's gallium scan. Honestly, that scan is mainly for baseline purposes. There are no plans currently for a biopsy or treatment. If there is Hodgkins in those nodes, it is very slow growing and we hope that a graft vs lymphoma effect will kick in.
Saturday, 28 February 2009
Wednesday, 25 February 2009
A Day At a Time
While Eric's blood counts are low, they seem to have stabilized. He hasn't needed blood products for over a week and we are cautiously optimistic that the graft is holding.
The next step is to understand what is left of the Hodge. The last couple of CT scans do show 2 nodes that have increased in size since last summer. While the increase is in terms of millimeters, we do need to be vigilant and determine what's up with these nodes now. They are not easily accessible for a biopsy and no one is keen on surgery while Eric's platelets are low. He will have a gallium scan (PET scans are approved for Hodgkins in Ontario but not in the BMT context - huh???) on Friday that may give us more insight. Basically, it's important to determine if there is still any Hodgkins hanging around while the disease burden is low.
If Dr F (Eric's hematologist) and Dr H decide that this is probably the Hodge, they will try to 'turn up the volume' on the graft and continue to monitor the nodes. The hope is that the donor's immune system will see the cancerous cells as foreign and kill them off.
It sounds easy doesn't it?
An allo transplant comes with a host of complications to be managed. For instance we know that Eric has had a fungal infection in his lungs and liver (fungus in either of these organs is fatal to many). It's under control and close to being gone. But until it is totally resolved, using steroids or reducing immunosuppressants to push this graft is extremely risky. So we wait and monitor. We have faith that Eric's body is strong and the graft is holding. We work with our doctors and ask never-ending questions. Our doctors continue to puzzle Eric's medical mysteries and work with doctors in BMT clinics around the world.
And today is a good day.
The next step is to understand what is left of the Hodge. The last couple of CT scans do show 2 nodes that have increased in size since last summer. While the increase is in terms of millimeters, we do need to be vigilant and determine what's up with these nodes now. They are not easily accessible for a biopsy and no one is keen on surgery while Eric's platelets are low. He will have a gallium scan (PET scans are approved for Hodgkins in Ontario but not in the BMT context - huh???) on Friday that may give us more insight. Basically, it's important to determine if there is still any Hodgkins hanging around while the disease burden is low.
If Dr F (Eric's hematologist) and Dr H decide that this is probably the Hodge, they will try to 'turn up the volume' on the graft and continue to monitor the nodes. The hope is that the donor's immune system will see the cancerous cells as foreign and kill them off.
It sounds easy doesn't it?
An allo transplant comes with a host of complications to be managed. For instance we know that Eric has had a fungal infection in his lungs and liver (fungus in either of these organs is fatal to many). It's under control and close to being gone. But until it is totally resolved, using steroids or reducing immunosuppressants to push this graft is extremely risky. So we wait and monitor. We have faith that Eric's body is strong and the graft is holding. We work with our doctors and ask never-ending questions. Our doctors continue to puzzle Eric's medical mysteries and work with doctors in BMT clinics around the world.
And today is a good day.
Monday, 23 February 2009
Rollercoaster
It's a rollercoaster - blood counts up on Saturday, dropped Sunday and rallied again today. At least the bouncing blood counts tell us that there is action in the marrow.
From Eric's history, we still assume that his marrow is not the best. Prior to the original transplant, his marrow could not create enough stem cells to move forward with an auto transplant. The doctors assume that this problem continues to plague him.
From my layman's perspective, it's like the marrow used up all it's reserve in boosting his WBC when he had the recent virus. Now everything is playing catch up and this new graft is again getting itself coordinated to produce enough cells on a regular basis. I have no facts to back this up - I just watch symptoms and test results and try to put the puzzle pieces together.
Saturday, 21 February 2009
Counts up a smidge this AM:
HgB from 96 > 97
Platelets from 20 > 21
WBC from 1.6> 1.7
Neutrophils from .9 > 1.0
More changes to immunosuppressants due to the risk of a negative reaction between Tacrolimus and Voraconazole. Sheesh. It's always something.
BTW, Eric is outpatient and feeling okay. We head in to the BMT clinic in the mornings for blood work and fluids - other than that, he's doing his regular thing - putting in hours on the Wii and XBOX, being a Sens fan and chauffeuring Morgan around town...
HgB from 96 > 97
Platelets from 20 > 21
WBC from 1.6> 1.7
Neutrophils from .9 > 1.0
More changes to immunosuppressants due to the risk of a negative reaction between Tacrolimus and Voraconazole. Sheesh. It's always something.
BTW, Eric is outpatient and feeling okay. We head in to the BMT clinic in the mornings for blood work and fluids - other than that, he's doing his regular thing - putting in hours on the Wii and XBOX, being a Sens fan and chauffeuring Morgan around town...
Stressful Times
Eric's counts have been dropping this week...
Hoping that it is from the virus he had...
Adjusting immunosuppressants...
Prayers and positive thought please. We really need this to work.
Hoping that it is from the virus he had...
Adjusting immunosuppressants...
Prayers and positive thought please. We really need this to work.
Friday, 13 February 2009
Happy Valentine's Day
Blood Counts: Good! 
Spots on CT Scan: Smaller! (and now assumed to be fungal and under control)
Weight: Up!
Colonoscopy: Inconclusive -- that means good to us!
Happy Valentine's Day Everyone!
Spots on CT Scan: Smaller! (and now assumed to be fungal and under control)
Weight: Up!
Colonoscopy: Inconclusive -- that means good to us!
Happy Valentine's Day Everyone!
Tuesday, 10 February 2009
Thank you
"A Pair of Shoes" was a poem I have come across a few times. Yesterday, I found it again, tucked at the bottom of Tyler's blog and I wanted to share it with all the Moms I know - especially for those who are wearing shoes like mine - or the similarly styled 'caregiver shoes'. You (and again, you all know who you are) have become a very special support team for me.
Eric continues to be my hero - he is relieved to have that damn colonoscopy over with. Now the team needs to look at all the pieces and figure out what's up. In the meantime, he's feeling pretty good but as shocked as all of us to learn about Tyler.
Eric continues to be my hero - he is relieved to have that damn colonoscopy over with. Now the team needs to look at all the pieces and figure out what's up. In the meantime, he's feeling pretty good but as shocked as all of us to learn about Tyler.
Monday, 9 February 2009
A Pair of Shoes
With thanks to my friends- especially the other Moms - you know who you are - who ask me about my shoes.... And with special thoughts for Tyler's Mom.
"A Pair of Shoes"
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author unknown
"A Pair of Shoes"
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author unknown
Thursday, 5 February 2009
Never a Dull Moment
Lots going on this week.... Eric had a CT Scan today. Hopefully this scan will give us more information on the spots on his liver and lung that developed during his transplant. Although all have been biopsied, nothing definitive has ever showed up. If the spots are smaller or the same, we can assume that there was an infection that is now under control (a fungal infection has been suspected for some time and Eric has been treated for this on an ongoing basis). If the spots are larger, then the docs need to figure out how to do another biopsy that would give us the definitive answer that is required. All expect that this would be invasive surgery.
There is some urgency to determine what these spots are. Eric has symptoms of GvHD that would be treated with steroids. He can't have steroids if there is any risk of active remaining infection.
Yes, the spots could be cancer. If so, the GvHD might be a good thing, in that it is expected that this response may indicate that the graft is also attacking the cancer cells. At the same time, the GvHD has to be controlled. Indeed, it's all a delicate balance...
Confused yet? Wait, there is more.
Eric also has an odd rash that infectious disease, hematology, BMT and dermatology have not been able to identify. They are planning to biopsy that as well. Again, it could be viral, bacterial or even Hodgkins.
So, while a large team sorts out these details, Eric is going into the BMT clinic daily for blood counts, fluids, assessments and tests. For long-time readers, you may remember that we are hitting the time that the graft was lost in Transplant 1. With that in the back of our minds, the close overview and scrutiny right now is very much appreciated. This graft is looking stronger - everyone knows that having it stick is the number one goal.
Dexter - the true supporter he is.... has decided to have sympathy diarrhea all week. Poor puppy is feeling much better today and is back to driving us crazy. Interestingly enough, he did throw up a sock at one point.... hmmmm.... I wonder?
There is some urgency to determine what these spots are. Eric has symptoms of GvHD that would be treated with steroids. He can't have steroids if there is any risk of active remaining infection.
Yes, the spots could be cancer. If so, the GvHD might be a good thing, in that it is expected that this response may indicate that the graft is also attacking the cancer cells. At the same time, the GvHD has to be controlled. Indeed, it's all a delicate balance...
Confused yet? Wait, there is more.
Eric also has an odd rash that infectious disease, hematology, BMT and dermatology have not been able to identify. They are planning to biopsy that as well. Again, it could be viral, bacterial or even Hodgkins.
So, while a large team sorts out these details, Eric is going into the BMT clinic daily for blood counts, fluids, assessments and tests. For long-time readers, you may remember that we are hitting the time that the graft was lost in Transplant 1. With that in the back of our minds, the close overview and scrutiny right now is very much appreciated. This graft is looking stronger - everyone knows that having it stick is the number one goal.
Dexter - the true supporter he is.... has decided to have sympathy diarrhea all week. Poor puppy is feeling much better today and is back to driving us crazy. Interestingly enough, he did throw up a sock at one point.... hmmmm.... I wonder?
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