Progress is slow, but the number are still going up and Dr. Ball is very happy. Gil seems to be feeling better, not getting as winded easily. (hopefully formatting stays)
6/20 6/27 normal
WBC 3.0 3.3 4.2+
RBC 3.96 4.25 4.3+
HGB 11.7 12.2 14+ This is the one that, when low, he get's winded.
PLT 165 256 140 - 440 necessary for clotting - YAY!
He walked 2 laps around Datsko park last week (about a mile) - it was a little rough at the end, but later that day we went to the mall and walked around before seeing a movie, and he felt good! Maybe we'll walk the park tomorrow - or maybe we'll just get breakfast, hmm....
Got a full day tomorrow as it is: Christian has his annual visit (after all we figure he's about 11 years old), and then we're gonna head south to Mom & Dad's for dinner. Next week is July 4th, so blood work will be on the 3rd, maybe the midnight run for me, and parade in Temple Terrace on the 4th - then we'll collapse for a while! OH - and Gil turns 50 on the 5th!!
Thursday, June 27, 2013
Friday, June 21, 2013
not normal yet
Well, of course, our normalcy is called into question everyday, but in this case I am speaking of Gil's blood work.
Visited the doc's office for blood work yesterday. His white cells went from 2.3 to 3.0 this week with the normal range starting at 4.2. Red cells and hemoglobin are also just slightly low 3.96 of 4.3 and 11.7 of 14 respectively and platelets are UP...165, normal is 140+!!
Today he posted on FB:
It's getting there. He's trying to get in some exercise when he's up for it, sometimes daily activities are enough.
Next week he will actually see Dr. Ball and I think she'll be real happy with his progress. Not sure when he will no longer be considered immuno-compromised, but we are taking everything one step at a time (little bit of ice in his drinks when ordering out).
This week was VBS at church, so I went on Monday to make sure all equipment was working and there were no technical difficulties, ran the computer for closing and the next couple of days. VBS is always an adventure. Next week ...who knows...hopefully we'll find some routine.
Visited the doc's office for blood work yesterday. His white cells went from 2.3 to 3.0 this week with the normal range starting at 4.2. Red cells and hemoglobin are also just slightly low 3.96 of 4.3 and 11.7 of 14 respectively and platelets are UP...165, normal is 140+!!
Today he posted on FB:
It's getting there. He's trying to get in some exercise when he's up for it, sometimes daily activities are enough.
Next week he will actually see Dr. Ball and I think she'll be real happy with his progress. Not sure when he will no longer be considered immuno-compromised, but we are taking everything one step at a time (little bit of ice in his drinks when ordering out).
This week was VBS at church, so I went on Monday to make sure all equipment was working and there were no technical difficulties, ran the computer for closing and the next couple of days. VBS is always an adventure. Next week ...who knows...hopefully we'll find some routine.
Thursday, June 13, 2013
Home again, home again
It is SUPER nice to be home! A little idea of how good it is...a little video of Gil's homecoming.
June 11th - It was the best birthday present I could have. Home with my hubby, my 'kids' and my own bed!
Gil had the central line removed Monday so Wednesday he got to take a 'real' shower, as he put it - no taping and protecting the line. Went to church Wednesday night for practice.
We went to Dr. Ball today. Thursday June 13th; His numbers are going up today (his white cells were at .65k when we left Monday, and are at 2.3 k) - still low but he is really impressing the Doctors.
Although we're getting back to our routine, somethings are still in adjustment - cleaning, playing & taking care of the animals, lifting - Gil tries helping out, but he tires out very quickly but he is growing stronger everyday!
Dr. Ball will be doing blood tests every Thursday for a while to keep an eye on his numbers, make sure they keep heading in the right direction. In August he'll go back to Moffitt for a CAT & PET scan to make sure everything is still good (yay follow-up) .
As for me - it's summer break. Time to catch up on reading, paperwork, maybe some training (running, bike, swim), and sleep - sleep is always good.
There's no place like home!
Gil had the central line removed Monday so Wednesday he got to take a 'real' shower, as he put it - no taping and protecting the line. Went to church Wednesday night for practice.
We went to Dr. Ball today. Thursday June 13th; His numbers are going up today (his white cells were at .65k when we left Monday, and are at 2.3 k) - still low but he is really impressing the Doctors.
Although we're getting back to our routine, somethings are still in adjustment - cleaning, playing & taking care of the animals, lifting - Gil tries helping out, but he tires out very quickly but he is growing stronger everyday!
Dr. Ball will be doing blood tests every Thursday for a while to keep an eye on his numbers, make sure they keep heading in the right direction. In August he'll go back to Moffitt for a CAT & PET scan to make sure everything is still good (yay follow-up) .
As for me - it's summer break. Time to catch up on reading, paperwork, maybe some training (running, bike, swim), and sleep - sleep is always good.
There's no place like home!
Thursday, June 06, 2013
+16
At day +16 he was deemed by the doctor as "boring".
Boring because he had nothing really going on. White counts dipped just enough again to get another booster, but no aches, no pains, no mouth sores, no more vomiting or diarrhea.
+16 and he is doing better than anyone has done before. He is also, it turns out, a bit of an experiment. He was the first to do this whole thing outpatient ...outside of his 5 days in the hospital with the a minor infection and the major effects of chemo, which 5 days is actually pretty good! SO if anyone goes into medical school and specializes in this area, you may read about him!
+16 and he is possibly cleared to go home, we just need to get the central line out. Depending on how and when that is scheduled, I may be the best birthday present ever - going home with my hubby at my side!!
+16 and we just got a call about taking out his central line Monday, June 10th (+20). Not even a month after his transplant. How cool is that??
OH - and by the way, his baby immune system will need a series of immunization shots all over again. Didn't think about that, eh?
Boring because he had nothing really going on. White counts dipped just enough again to get another booster, but no aches, no pains, no mouth sores, no more vomiting or diarrhea.
+16 and he is doing better than anyone has done before. He is also, it turns out, a bit of an experiment. He was the first to do this whole thing outpatient ...outside of his 5 days in the hospital with the a minor infection and the major effects of chemo, which 5 days is actually pretty good! SO if anyone goes into medical school and specializes in this area, you may read about him!
+16 and he is possibly cleared to go home, we just need to get the central line out. Depending on how and when that is scheduled, I may be the best birthday present ever - going home with my hubby at my side!!
+16 and we just got a call about taking out his central line Monday, June 10th (+20). Not even a month after his transplant. How cool is that??
OH - and by the way, his baby immune system will need a series of immunization shots all over again. Didn't think about that, eh?
Wednesday, June 05, 2013
continued recovery
Recovery continues. Monday Gil got another neupogen shot as his white blood cells took a little dip. His digestive issues seem to have passed. Food is tasting better and he is eating whole meals (although not a lot at one time). Blood pressure is running low (87/58 ??), but seems to be coming up (96/64). I know it has run low for the last 7 years - after his first round with hodgkin's. Everything really seems to be going well!
So...we are waiting on more blood tests to see how close he is to normal ranges, to actually see the doctor (tomorrow), get the central line out, and be fully discharged - or at least allowed to go home to Clearwater. After that, we still have to wait for clearance for him to start driving and working again - that may be 3 months down the road.
I do feel we have been very fortunate.
#1 he did auto - less rejection, higher success & quicker recovery than allo (autologous (aw-TOL-o-gus) and allogenic (a-LO-jen-ik). ~ http://www.nhlbi.nih.gov/health/health-topics/topics/bmsct/)
#2 we were able to stay near home by going to Moffitt here in Tampa (not Gainsville or Detroit Michigan or ....not sure where else they do it)
#3 He was allowed to do all his chemo out-patient (a first, from what we understand) because...
#4 we have had such great support from work, church & my run group - best cheering sections EVER!!!
#5 when things got bad, he was able to stay in the hospital where they gave him the fluids, electrolytes, and other meds he needed in a controlled environment - I think they did better than I could have done at the hotel and I would have been freaking out!
#6 we were near 2 nice running loops, so when I needed to, I could take frustrations/helplessness/stress...IT out on the road; it also gave us nice places to walk when he was able.
#7 after the hospital, our appointments changed allowing us more morning time and the occasional day off.
#8 Gil lost some weight (about 8 lbs?)
I'm sure we can come up with some other 'benefits' - not the vacation anyone would really want, but it could have been worse.
Cheers!
As bad as you are, you know how to give good things to your children. How much more, then, will your Father in heaven give good things to those who ask him!
~~ Matt 7:11
So...we are waiting on more blood tests to see how close he is to normal ranges, to actually see the doctor (tomorrow), get the central line out, and be fully discharged - or at least allowed to go home to Clearwater. After that, we still have to wait for clearance for him to start driving and working again - that may be 3 months down the road.
I do feel we have been very fortunate.
#1 he did auto - less rejection, higher success & quicker recovery than allo (autologous (aw-TOL-o-gus) and allogenic (a-LO-jen-ik). ~ http://www.nhlbi.nih.gov/health/health-topics/topics/bmsct/)
#2 we were able to stay near home by going to Moffitt here in Tampa (not Gainsville or Detroit Michigan or ....not sure where else they do it)
#3 He was allowed to do all his chemo out-patient (a first, from what we understand) because...
#4 we have had such great support from work, church & my run group - best cheering sections EVER!!!
#5 when things got bad, he was able to stay in the hospital where they gave him the fluids, electrolytes, and other meds he needed in a controlled environment - I think they did better than I could have done at the hotel and I would have been freaking out!
#6 we were near 2 nice running loops, so when I needed to, I could take frustrations/helplessness/stress...IT out on the road; it also gave us nice places to walk when he was able.
#7 after the hospital, our appointments changed allowing us more morning time and the occasional day off.
#8 Gil lost some weight (about 8 lbs?)
I'm sure we can come up with some other 'benefits' - not the vacation anyone would really want, but it could have been worse.
Cheers!
As bad as you are, you know how to give good things to your children. How much more, then, will your Father in heaven give good things to those who ask him!
~~ Matt 7:11
Saturday, June 01, 2013
BoUnCe
If anyone ever get's a blood or marrow transplant, let me tell ya now - it's 6-7 days after the transplant that the chemo will get ya'.
His numbers are up and so is he, so to speak. (we are at +11)
We just got back to the hotel after Gil's 5 day stay in at Moffitt. Energy is real low, hair is falling out, and his digestive issues are getting under control.
But his blood is reproducing as expected:
White BC hit a low of .05k to, now, .99k (normal range 4.0-10.9)
Hemoglobin is up and down, low of 10, highest was 11, down today to 9.4 (range is 13.4 - 16.9)
Platelets keep fluctuating lowest was .7, currently at 18...below 10 he gets an infusion (he's had 2 so far - day +6 & day +9).
Neutrophils are up to .55k from nothing (range 1.8-7.8), I guess these are important buggers for the immune system 'cause that is the one they watch to let us know when he can resume normal activities...and to what extent.
Now, the other night my mom asked me a tricky question: How do we know if this all worked?
Are you asking was the transplant successful? His blood is reproducing, for the most part, so I would say the transplant was a success. Very high success rate with Auto transplant anyways because it's all your own cells.
In the way of curing his cancer? They wanted him in total remission before they started, so technically cancer free as of the beginning of this transplant process. So it really didn't cure the cancer itself, but should prevent him from ever having Hodgkin's again. There is a possibility of another form of cancer somewhere down the line - but only as much as the next person.
So WAS it a success? I guess we'll only know if he never has Hodgkin's again!
All I know is I hope he continues to bounce back. It should be about 3 months before life returns to normal - about a year for complete recovery. For now, we are still in Tampa till June 6th at the earliest, June 13th at the latest.
His numbers are up and so is he, so to speak. (we are at +11)
We just got back to the hotel after Gil's 5 day stay in at Moffitt. Energy is real low, hair is falling out, and his digestive issues are getting under control.
But his blood is reproducing as expected:
White BC hit a low of .05k to, now, .99k (normal range 4.0-10.9)
Hemoglobin is up and down, low of 10, highest was 11, down today to 9.4 (range is 13.4 - 16.9)
Platelets keep fluctuating lowest was .7, currently at 18...below 10 he gets an infusion (he's had 2 so far - day +6 & day +9).
Neutrophils are up to .55k from nothing (range 1.8-7.8), I guess these are important buggers for the immune system 'cause that is the one they watch to let us know when he can resume normal activities...and to what extent.
Now, the other night my mom asked me a tricky question: How do we know if this all worked?
Are you asking was the transplant successful? His blood is reproducing, for the most part, so I would say the transplant was a success. Very high success rate with Auto transplant anyways because it's all your own cells.
In the way of curing his cancer? They wanted him in total remission before they started, so technically cancer free as of the beginning of this transplant process. So it really didn't cure the cancer itself, but should prevent him from ever having Hodgkin's again. There is a possibility of another form of cancer somewhere down the line - but only as much as the next person.
So WAS it a success? I guess we'll only know if he never has Hodgkin's again!
All I know is I hope he continues to bounce back. It should be about 3 months before life returns to normal - about a year for complete recovery. For now, we are still in Tampa till June 6th at the earliest, June 13th at the latest.
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