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Heart surgery
Nov. 12th, 2011 08:42 amFeeling better all the time. Had a nice flow of visitors yesterday. Probably here for another day. Thank you all for the well wishes. I'll have more to say in the coming days.
Done with dialysis---Maybe!
May. 31st, 2010 06:05 pmCecilia went in for dialysis today. After the preliminary lab tests, they said "Let's just hold off on doing it anymore" and sent her home instead. Her kidneys are apparently doing the job. Two weeks of this and the port comes out.
At the rate she is going, it won't be long before she leaves the leg braces and walker behind as well.
Oh, and she passed her tests for school last week so she will start third grade with the rest of her class next Fall.
June 7 will mark a year since she was diagnosed with Acute Lymphatic Leukemia.
At the rate she is going, it won't be long before she leaves the leg braces and walker behind as well.
Oh, and she passed her tests for school last week so she will start third grade with the rest of her class next Fall.
June 7 will mark a year since she was diagnosed with Acute Lymphatic Leukemia.
Haven't updated about Cecilia recently.
May. 22nd, 2010 07:52 amThe deep concern about her kidney function is easing. The transplant seems completely successful. The other day when I saw her, she really looked herself. Her hair has grown out enough that it looks like a style that might have been chosen. Instead of sitting huddled up protectively in her chair, she was sprawled across it with one leg draped over an arm. A much more natural pose for an 8 year old watching TV.
One of her Grandmas took over updating her CaringBridge page. She describes things quite well. Check it out.
http://www.caringbridge.org/visit/ceciliarose
Her Dad chose the picture.
I tried posting some of this on FB, but adds a link to the page and them seems to disappear when I actually post it.
One of her Grandmas took over updating her CaringBridge page. She describes things quite well. Check it out.
http://www.caringbridge.org/visit/ceciliarose
Her Dad chose the picture.
I tried posting some of this on FB, but adds a link to the page and them seems to disappear when I actually post it.
Cecilia went home last night.
Mar. 29th, 2010 08:49 amShe is far from well, but this is a major threshold on the "better" scale. She will be in no danger of becoming a stranger at the hospital. She will be doing outpatient dialysis 3 or 4 times a week and a regular battery of tests. But at the end of the day she will be in her own bed in her own room, brothers and sister, Mom and Dad nearby. She will be home.
Rule of 90
Mar. 20th, 2010 11:09 amI hit an odd threshold yesterday. Rule of 90. When years of service plus age equals 90, I can retire with my full retirement benefit. The reality is that I don't think I can take advantage of this for another year. But the empowerment to be able to say enough of this crap and walk away is......interesting. It would be financially difficult to do this, but we wouldn't starve.
Understand, I like my job (and the "crap" isn't a big or common part), but I'm about ready to be done with it.
Understand, I like my job (and the "crap" isn't a big or common part), but I'm about ready to be done with it.
Cecilia update
Mar. 18th, 2010 03:14 pmJust posted most of this on FB, but this is not an entirely coincident population, so.....
Cecilia is still one very sick little girl. But there is every indication that the transplant took. She is still on dialysis, but for fewer hours and she got to skip one day. Pancreatic function is back to normal. Her lungs aren't completely clear yet. The cause of the fevers is still a mystery, but they are spiking through a lower range. She is up and using a walker a little each day now. She even got to visit home for a few hours yesterday. That visit showed her why she still has to be in the hospital.
Cecilia is still one very sick little girl. But there is every indication that the transplant took. She is still on dialysis, but for fewer hours and she got to skip one day. Pancreatic function is back to normal. Her lungs aren't completely clear yet. The cause of the fevers is still a mystery, but they are spiking through a lower range. She is up and using a walker a little each day now. She even got to visit home for a few hours yesterday. That visit showed her why she still has to be in the hospital.
Cecilia has had a couple of rough days. She won't have experienced them much as she has been sedated through most of it. She was intubated to assist her breathing. Allowing her to get some rest from the work of breathing on her own with the lung infection. She was also put on dialysis because her kidneys shut down. During all of this she spiked a high fever again.
So today. She is still on dialysis but her kidneys are working some. They will be weaning her off of the breathing tube over the next few days. The report is that she is stable and getting better.
So today. She is still on dialysis but her kidneys are working some. They will be weaning her off of the breathing tube over the next few days. The report is that she is stable and getting better.
After three days at 0.2, today her White Blood Cell count is 0.7. This is the low end of where it should be.
She is not well otherwise. There is a viral infection her lungs and lots of side effects form the meds she is on. She is still spiking fevers. Kidney function is weak. All of this is supposedly manageable and we are told she is doing better than most marrow transplant patients. It is still a lot for an 8 year old to go through and hard to watch.
But the 0.7 WBC is really good news.
She is not well otherwise. There is a viral infection her lungs and lots of side effects form the meds she is on. She is still spiking fevers. Kidney function is weak. All of this is supposedly manageable and we are told she is doing better than most marrow transplant patients. It is still a lot for an 8 year old to go through and hard to watch.
But the 0.7 WBC is really good news.
Cecilia has white blood cells!!
Feb. 14th, 2010 07:29 pmThese are the first since before the bone marrow transplant over two weeks ago. Her white cell count today was 0.1%. She has a ways to go, but it is more than zero.
Part the second...Thumbs up
Jan. 29th, 2010 03:01 pmThanks for all of the good thoughts, prayers and songs sent our way today.
Cecilia woke up after the transplant and asked if she could go home now. She's napping again. Now we wait. I think I might have a good show tonight.
Cecilia woke up after the transplant and asked if she could go home now. She's napping again. Now we wait. I think I might have a good show tonight.
Part the first...Thumbs up
Jan. 29th, 2010 09:15 amJust got word that they are waking Sylvio up after the marrow extraction. He went under around 7:30 and they had to wait on lab work to know if the single extraction yielded enough cells for the transplant. It did and the infusion into Cecilia will proceed this afternoon.
Cecilia's part won't be much different to the many rounds of deep chemo she has had before. There is some possibility that she will react differently. After that it will be 2 to 3 weeks before we know her marrow is back in business.
Cecilia's part won't be much different to the many rounds of deep chemo she has had before. There is some possibility that she will react differently. After that it will be 2 to 3 weeks before we know her marrow is back in business.
Kachink….. Kachink….. Kachink…..
Jan. 27th, 2010 09:17 amMy life has been an emotional rollercoaster lately. I’ve spoken and posted about the good news, the ups in Cecilia’s battle with leukemia, but not so much about the downs.
The cancer reasserted itself in mid November. The heavy chemo drugs they put her on shut down her insulin production and she almost died on the day after Thanksgiving. That particular drug ran a short course and blood sugar levels could be managed the same as for a diabetic. When she was done with it her pancreas went back to normal functioning.
The rest of the heavy chemo continued through last week, to force her into remission. It did. She was over to our house two days last week. She was her normal bight, funny, cheerful self. Except for being a bit frail and bald. She did crafts with Grandma, played games and made delightful comments on anything that came up. Then the world changed.
This week that rollercoaster is making its slow suspenseful climb to the high peak. (Kachink….. Kachink….. Kachink…..)
Cecilia has been in the hospital since Friday undergoing a lot of chemotherapy and radiation treatments. The difference is that these are designed to destroy her bone marrow. On Friday her 18 month old brother Sylvio will be put under general anesthesia and as much marrow as his little body can spare will be harvested. Cecilia, also under general anesthesia, will be waiting to receive this. Sylvio is an almost unheard of 100% tissue match.
Long before this was scheduled, Riverfolk had scheduled a show at the Coffee Grounds this Friday evening. When these surgeries were scheduled last week, I considered canceling the show, but didn’t. I suppose this is my version of denial. In troubling times I seek out doses of normal. Everything will be fine and I can do the show as planned. At present I am still planning to do the show.
I was going to work as usual on Friday as well. “Nothing to do at the hospital but wait.” I’ve changed my mind. My child is putting her healthy, precious, baby at risk to save her very sick precious eight-year-old daughter. I’ll be there. Being there is important.
Kachink….. Kachink….. Kachink…..
The cancer reasserted itself in mid November. The heavy chemo drugs they put her on shut down her insulin production and she almost died on the day after Thanksgiving. That particular drug ran a short course and blood sugar levels could be managed the same as for a diabetic. When she was done with it her pancreas went back to normal functioning.
The rest of the heavy chemo continued through last week, to force her into remission. It did. She was over to our house two days last week. She was her normal bight, funny, cheerful self. Except for being a bit frail and bald. She did crafts with Grandma, played games and made delightful comments on anything that came up. Then the world changed.
This week that rollercoaster is making its slow suspenseful climb to the high peak. (Kachink….. Kachink….. Kachink…..)
Cecilia has been in the hospital since Friday undergoing a lot of chemotherapy and radiation treatments. The difference is that these are designed to destroy her bone marrow. On Friday her 18 month old brother Sylvio will be put under general anesthesia and as much marrow as his little body can spare will be harvested. Cecilia, also under general anesthesia, will be waiting to receive this. Sylvio is an almost unheard of 100% tissue match.
Long before this was scheduled, Riverfolk had scheduled a show at the Coffee Grounds this Friday evening. When these surgeries were scheduled last week, I considered canceling the show, but didn’t. I suppose this is my version of denial. In troubling times I seek out doses of normal. Everything will be fine and I can do the show as planned. At present I am still planning to do the show.
I was going to work as usual on Friday as well. “Nothing to do at the hospital but wait.” I’ve changed my mind. My child is putting her healthy, precious, baby at risk to save her very sick precious eight-year-old daughter. I’ll be there. Being there is important.
Kachink….. Kachink….. Kachink…..
A couple of updates
Oct. 2nd, 2009 03:55 pmCecilia
She appears to be in remission. ( Long version behind the cut )
She turns 8 next week.
My fingers
I'm on my second day with no bandages. ( Long version ) All-in-all I'll be back in all night jamming form soon. I expect no problem with the next Riverfolk show on Oct 23.
She appears to be in remission. ( Long version behind the cut )
She turns 8 next week.
My fingers
I'm on my second day with no bandages. ( Long version ) All-in-all I'll be back in all night jamming form soon. I expect no problem with the next Riverfolk show on Oct 23.
Cecilia update
Jun. 17th, 2009 06:26 pmThanks to all for the good wishes, hugs (virtual and physical) and offers of help.
Cecilia is going home from the hospital today after only 12 days of the expected 3 to 4 weeks she was expected to stay. She has responded amazingly to her treatments. (I think it takes a lot to amaze these doctors). She has beaten the pneumonia even with the immuno-suppressing chemotherapy for the leukemia. BEFORE her second round of chemo earlier this week, there were no traces of leukemia remaining in her blood. The abnormal cell count in her bone marrow was down to 45% from an initial 80%. She has had almost no adverse reaction to her chemotherapy (two rounds now). She is cheerful and has a good appetite. Pretty much her old self. Aside from the reality that she does have leukemia, we couldn't be more pleased.
She will still have to go through the 2 year treatment regime, but it seems it is not going to be the ordeal it might have been for her and all signs point to her kicking some cancer butt.
Cecilia is going home from the hospital today after only 12 days of the expected 3 to 4 weeks she was expected to stay. She has responded amazingly to her treatments. (I think it takes a lot to amaze these doctors). She has beaten the pneumonia even with the immuno-suppressing chemotherapy for the leukemia. BEFORE her second round of chemo earlier this week, there were no traces of leukemia remaining in her blood. The abnormal cell count in her bone marrow was down to 45% from an initial 80%. She has had almost no adverse reaction to her chemotherapy (two rounds now). She is cheerful and has a good appetite. Pretty much her old self. Aside from the reality that she does have leukemia, we couldn't be more pleased.
She will still have to go through the 2 year treatment regime, but it seems it is not going to be the ordeal it might have been for her and all signs point to her kicking some cancer butt.
My daughter said something like this Sunday.
My 7 year old granddaughter, Cecilia, was sent to emergency Friday then admitted to the hospital with Pneumonia in both lungs. Saturday her blood work showed some oddities in some cells. Sunday she was diagnosed with Acute lymphoblastic leukemia (ALL). Monday, after it was determined which type she has, she began what will be a 2 year long regime of treatment with her first round of chemotherapy.
She's only seven.
Prognosis is good. Complete remission rate for children is %85. She has several other factors going in her favor beyond that. She is doing amazingly well settling into life in the hospital. It will be here home for the next three or four weeks.
My 7 year old granddaughter, Cecilia, was sent to emergency Friday then admitted to the hospital with Pneumonia in both lungs. Saturday her blood work showed some oddities in some cells. Sunday she was diagnosed with Acute lymphoblastic leukemia (ALL). Monday, after it was determined which type she has, she began what will be a 2 year long regime of treatment with her first round of chemotherapy.
She's only seven.
Prognosis is good. Complete remission rate for children is %85. She has several other factors going in her favor beyond that. She is doing amazingly well settling into life in the hospital. It will be here home for the next three or four weeks.
Thanks, I needed that.
Nov. 24th, 2008 03:26 pmI wrote about needing more music a while back. I've gotten a few good doses recently.
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