My Dad was unhooked from the chemo Christmas tree (or the IV stand) today. I walked in and nothing was beeping, the heart monitor was off, and I thought - ahhh, silence. But, he is running a fever and they still have him hooked up to the oxygen.
The latest counts were that his WBCs were at .2 and his Blasts were at 19%, down from 30% yesterday. We want 0% remember! He will be getting more platlets and blood tonight to keep his red blood cells sustained and hemaglobin etc.
The excitement tonight was that he was promoted back up to the sixth floor. He had come down to the Leukemia/Bone Marrow Transplant Unit last Saturday because his heart went "a-fib", but tonight, someone sicker than he needed his space. He got moved because he was the healthiest on the floor (which doesn't say much - but we'll take it!). His new room is much larger and the view is better from the window. The chairs seem better too - I am reading as I'm typing and can't believe I'm saying this stuff! Anyways, he got resettled and was going to sleep.
The first thing he said when they were moving him was "I better get to keep my bed". That was because it took a week to get an extender put on it and he can finally stretch out. He wasn't going to leave without it!
The only bummer was the old room had a hook hanging from the ceiling and my Mom had strung some Mardi Gras beads on it - the new room didn't have the hook, so no hanging beads right now. When I walked in the old room, I said, "what did you have to do to get those beads?" and he said, "NO, not me. It's what you have to do to get those beads!" I'm sure he used that on all the nurses today! : )
Saturday, February 13, 2010
Friday, February 12, 2010
Day 9 - Last day of chemo
Today, Dad will get hooked up to his last bag of chemo and finish it tomorrow afternoon. Then we wait. One of the nurses came in and talked to Mom and I for a while this afternoon. She was very nice.
Basically, the bone marrow results from last week told us that my Dad's white blood cells (WBC) were 87% infected by the leukemia when he was admitted. That means that 87% of the WBC's were blasts, which are abnormal cells. I was pretty surprised to see that number, but then I was relieved that it wasn't worse too.
Since last week, on the chemo, they "estimate" that the blasts are down to 30% in his WBC. The reason I say "estimate" is that they are pulling those numbers from blood that is drawn through a port, not bone marrow (which is 100% accurate). The blood has circulated and so it isn't a perfect result.
The nurse also filled us in a little on what we face going forward. She said, depending on the bone marrow draw next Friday, we will either stay in the hospital another couple weeks while Dad's WBCs hopefully reproduce and build up his immune system that's completely destroyed right now, or we could start another round of chemo if the blasts are still there (potentially).
She also said, if we do reach remission and go home at the end of 28 days, Dad will get a break (a couple weeks) and then he'll have to check back in for another round of what we're doing right now (another 28 days). That was not what I expected to hear, but am glad for the reality check, so I know what is going to happen. That session of therapy (chemo round 2) is called consolidation.
Otherwise, Dad took a little jaunt through the halls (only one lap today). I think he was pretty tuckered from yesterday. They did give him some blood and platelets overnight to help sustain some of those numbers. He's doing okay. They are trying to wean him off the oxygen and have kept at the diuretics for the excess fluid (which he absolutely loves! Not).
Hang tough and much love!
Thursday, February 11, 2010
Day 8 & Quinn's 8th Birthday (crazy 8s)
My Mom said my Dad rode the stationary bike for 15 minutes this morning and took a walk with Ethan through the halls. He has come off the oxygen for the most part, but they did have him back on it while he was "working out". The chest x-ray from yesterday showed that the left side of my Dad's lungs still have some fluid (pneumonia), but the right was clear.
They are still monitoring his fluid intake and output religiously and everything else.
His WBC count was down to a .6 today - which is good. It's getting there.
Yesterday the managing head nurse (formerly known as head honcho nurse in a previous post) came in and answered a bunch of questions for my parents. Basically, best case scenario - my dad will complete this phase of induction (chemotherapy), wait, and see what happens next week with his body reacting to the chemo, do another bone marrow draw (next Friday), and test for the presence of the bad WBCs again. Hopefully, they won't find any and we can continue to monitor his progress another week or so and go home. He will then come back for maintenance therapy for several months.
If they do find the bad WBCs again after the bone marrow test next Friday, we go back to square one and start chemo all over again.
All in all, though, today is about Quinn's 8th birthday. We have done the donuts for class thing, I went up to school and ate lunch with her, and we're going to bake her a cake and make tacos for dinner (her fave). All of that and a couple gifts too. I want it to be a banner birthday for her. Wish me luck!
Thank you again for the blessings, notes, and prayers. Keep them coming. That is all GOOD MEDICINE for our family. My Dad needs the medicine the doctors can provide, but he also needs the MEDICINE we can provide, so thank you!
They are still monitoring his fluid intake and output religiously and everything else.
His WBC count was down to a .6 today - which is good. It's getting there.
Yesterday the managing head nurse (formerly known as head honcho nurse in a previous post) came in and answered a bunch of questions for my parents. Basically, best case scenario - my dad will complete this phase of induction (chemotherapy), wait, and see what happens next week with his body reacting to the chemo, do another bone marrow draw (next Friday), and test for the presence of the bad WBCs again. Hopefully, they won't find any and we can continue to monitor his progress another week or so and go home. He will then come back for maintenance therapy for several months.
If they do find the bad WBCs again after the bone marrow test next Friday, we go back to square one and start chemo all over again.
All in all, though, today is about Quinn's 8th birthday. We have done the donuts for class thing, I went up to school and ate lunch with her, and we're going to bake her a cake and make tacos for dinner (her fave). All of that and a couple gifts too. I want it to be a banner birthday for her. Wish me luck!
Thank you again for the blessings, notes, and prayers. Keep them coming. That is all GOOD MEDICINE for our family. My Dad needs the medicine the doctors can provide, but he also needs the MEDICINE we can provide, so thank you!
Wednesday, February 10, 2010
Day 7
Went up this morning to visit. Dad was starting his physical therapy session. He had to pedal on this dilapidated little machine for 15 minutes. He did it, no problem. Then he had to arm pedal with the same machine on a table for 15 minutes. He did that too, no problem. He's really lobbying for hall priveleges where he can get up and walk, so he was determined to get through the whole 15 minutes of each exercise. He didn't seem like he couldn't do it, but he was tired afterwards. The PT tech was impressed and said he'd put in a good word for him! : )
My Mom said a nurse (we'll call her head honcho nurse) came in last evening and talked to them for about a half hour. I guess my Dad would not be a good candidate for bone marrow transplant down the road, which is disappointing. His age and the fact that his brother (who would only have a 1:4 chance of matching) has health issues pretty much narrow his chances of being suitable.
They said head honcho nurse was pretty vague about everything - which seems to be the way they all are. They don't want to say too much for fear of freaking you out or being wrong. Right now, we are still working towards remission and then next week, hopefully we'll be getting there. The following week, we'll be building back up his immune system and hopefully, the final week, going home. He will have to come back for several days of chemo, possibly, in the next several months, at varying intervals. But that chemo will be to target the specific kind of AML that my Dad has - it will be his own special cocktail of drugs.
One day at a time. I am sure they told my parents a lot more, but they are still processing and like all parents, want to protect me (or their kids), so they don't tell me everything (which drives me batty).
His WBC count yesterday was at a 1. It could go to 0, we'll see. He did get a couple bags of blood transfused yesterday too. They want to keep some good WBC's going in since the chemo kills both the good and the bad.
He was told to back off the liquid intake. He has some fluid on his lungs, so they're using diuretics to try and diffuse some of that, but he keeps drinking so much that they are doing no good. So, he's on sips and ice for a while. We got some lifesavers and hopefully that will help with the dry mouth.
His heart is still in "a-fib" and they've pretty much determined it could just stay that way. Apparently people live with that for years and never know. He's getting another EKG today.
Other than all of that - he seemed in okay spirits. He's definitely turned a corner and is in fight mode, thank GOD. When I left he was working on eating a scrambled egg and a piece of toast (yes, one egg and one piece of toast!) and a chocolate shake.
One week down, three to go. Thanks for the prayers!
My Mom said a nurse (we'll call her head honcho nurse) came in last evening and talked to them for about a half hour. I guess my Dad would not be a good candidate for bone marrow transplant down the road, which is disappointing. His age and the fact that his brother (who would only have a 1:4 chance of matching) has health issues pretty much narrow his chances of being suitable.
They said head honcho nurse was pretty vague about everything - which seems to be the way they all are. They don't want to say too much for fear of freaking you out or being wrong. Right now, we are still working towards remission and then next week, hopefully we'll be getting there. The following week, we'll be building back up his immune system and hopefully, the final week, going home. He will have to come back for several days of chemo, possibly, in the next several months, at varying intervals. But that chemo will be to target the specific kind of AML that my Dad has - it will be his own special cocktail of drugs.
One day at a time. I am sure they told my parents a lot more, but they are still processing and like all parents, want to protect me (or their kids), so they don't tell me everything (which drives me batty).
His WBC count yesterday was at a 1. It could go to 0, we'll see. He did get a couple bags of blood transfused yesterday too. They want to keep some good WBC's going in since the chemo kills both the good and the bad.
He was told to back off the liquid intake. He has some fluid on his lungs, so they're using diuretics to try and diffuse some of that, but he keeps drinking so much that they are doing no good. So, he's on sips and ice for a while. We got some lifesavers and hopefully that will help with the dry mouth.
His heart is still in "a-fib" and they've pretty much determined it could just stay that way. Apparently people live with that for years and never know. He's getting another EKG today.
Other than all of that - he seemed in okay spirits. He's definitely turned a corner and is in fight mode, thank GOD. When I left he was working on eating a scrambled egg and a piece of toast (yes, one egg and one piece of toast!) and a chocolate shake.
One week down, three to go. Thanks for the prayers!
Tuesday, February 9, 2010
Day 6
I didn't make it up to the hospital today - I'm feeling a little under the weather, so better not be around Dad. After talking to my Mom around 1:30pm, she said he had managed to get up and take a walk with the physical therapist (which is great!) and that PT was going to be bringing him some kind of machine for him to work on to keep him moving. Dad ordered breakfast for himself this morning, which is good (he hasn't eaten in 6 days, really).
We hadn't heard anything new from his blood counts at that point and I don't know if that has changed yet or not. The nurses said not to obsess about the counts, but it's hard not to.
Otherwise, Mom thought he sounded a little better and just getting to shower again was a huge spirit booster.
They have told us that Dad will probably lose his hair (I'm thinking next week), so that will definitely be interesting. We were kidding with my cousin that he could get a bad ass tattoo on his skull. Anything is possible. That's my new mantra.
We hadn't heard anything new from his blood counts at that point and I don't know if that has changed yet or not. The nurses said not to obsess about the counts, but it's hard not to.
Otherwise, Mom thought he sounded a little better and just getting to shower again was a huge spirit booster.
They have told us that Dad will probably lose his hair (I'm thinking next week), so that will definitely be interesting. We were kidding with my cousin that he could get a bad ass tattoo on his skull. Anything is possible. That's my new mantra.
Monday, February 8, 2010
Visit Day 5
Went up to hospital around 3:00pm - they were doing a chest x-ray when I arrived. They had switched antibiotics to a different one earlier in the day and reduced Dad's oxygen (although his levels were still low 90-even 89 and you want in the 90s). The x-ray showed some pneumonia, so they were happy they switched antibiotics because he's probably had this for a couple days (since he's had a fever) and they hope the new antibiotic gets rid of it. They also gave him a diuretic to keep excess fluid from collecting.
The good news was his WBC count was 13,000 from yesterdays draw and earlier today, they were in the 4000s (YES!). Remember normal is 0-10,000. Of course, these white blood cells are not all normal cells, but we need to get rid of them. Numbers dropping right now is what we want (eventually, we'll want them climbing, but not yet).
Another count they are watching determines if he needs any blood transfused. I am not sure of what the measurement stands for, but below a 24, you need a transfusion. He's borderline, running just above 24 and once dipped into the high 23s. The reason for a transfusion is the chemo is killing good and bad cells. The transfusion replaces some of the good that is destroyed.
That's where we're at right now. He did say it "hurts" and that sucked to hear. He said he just feels awful and I said, "if you feel bad now, wait til next week." and he laughed and said, "aren't you the voice of cheer." It was funny, even though it won't be later .
The good news was his WBC count was 13,000 from yesterdays draw and earlier today, they were in the 4000s (YES!). Remember normal is 0-10,000. Of course, these white blood cells are not all normal cells, but we need to get rid of them. Numbers dropping right now is what we want (eventually, we'll want them climbing, but not yet).
Another count they are watching determines if he needs any blood transfused. I am not sure of what the measurement stands for, but below a 24, you need a transfusion. He's borderline, running just above 24 and once dipped into the high 23s. The reason for a transfusion is the chemo is killing good and bad cells. The transfusion replaces some of the good that is destroyed.
That's where we're at right now. He did say it "hurts" and that sucked to hear. He said he just feels awful and I said, "if you feel bad now, wait til next week." and he laughed and said, "aren't you the voice of cheer." It was funny, even though it won't be later .
mid day - day 5
Mom said Dad's WBC count was down to 13,000 from yesterday's blood draw (prior to starting day two of chemo, they took blood). That is great news! We want that number to keep going DOWN! On Saturday, before starting chemo at all, his WBC was 35,000 - so, we're making some progress.
Days 4- 5
Overnight on Saturday (day 3), my Dad had some pulmonary problems sneak up on him. They swarmed his room in the middle of the night like a swat team and freaked him out. Apparently his heart had gone "a-fib" - it wasn't pumping right, so he got moved to a different floor for better monitoring. It was scary because the floor they moved him to wasn't just a regular floor, it says Bone Marrow Transplant and Leukemia Floor when you get off the elevator - much more intense.
He made progress yesterday in that his heart kind of stopped freaking out and he was able to switch from two cardiac drips (in addition to the other 5) down to one and he started taking the one he dropped in an oral form. Last evening they droped the second cardiac medication and were hoping to get him off the monitor last night too. His rhythm was evening out. I think it was a reaction to stress and the chemo starting up. I am hoping we don't have any more unexpected hiccups like that.
I saw my Dad yesterday afternoon and I thought he looked better (spirit wise) and sounded a little more "in the fight" than before, but my Mom thought he seemed a little more down. I am sure when I visit he's a little perkier than when it's just he and Mom.
They drew blood before putting up his second day of chemo (another drip), so I am curious to hear those results today. We are still waiting on more info from the bone marrow draw, so again, waiting on more information.
No matter what, the course of treatment they are doing right now is what they would do no matter what. It is only once they start to further pinpoint the disease that they start tweaking chemo and drugs later. So, for now, these seven days are the way to go.
Tried to get up there today and was a couple minutes from the hospital when school called -Quinn wasn't feeling well, so I had to turn around and go all the way back to get her. Don't know when I'll get up again with the snow and the week we have ahead (Quinn's birthday on Thursday etc).
He made progress yesterday in that his heart kind of stopped freaking out and he was able to switch from two cardiac drips (in addition to the other 5) down to one and he started taking the one he dropped in an oral form. Last evening they droped the second cardiac medication and were hoping to get him off the monitor last night too. His rhythm was evening out. I think it was a reaction to stress and the chemo starting up. I am hoping we don't have any more unexpected hiccups like that.
I saw my Dad yesterday afternoon and I thought he looked better (spirit wise) and sounded a little more "in the fight" than before, but my Mom thought he seemed a little more down. I am sure when I visit he's a little perkier than when it's just he and Mom.
They drew blood before putting up his second day of chemo (another drip), so I am curious to hear those results today. We are still waiting on more info from the bone marrow draw, so again, waiting on more information.
No matter what, the course of treatment they are doing right now is what they would do no matter what. It is only once they start to further pinpoint the disease that they start tweaking chemo and drugs later. So, for now, these seven days are the way to go.
Tried to get up there today and was a couple minutes from the hospital when school called -Quinn wasn't feeling well, so I had to turn around and go all the way back to get her. Don't know when I'll get up again with the snow and the week we have ahead (Quinn's birthday on Thursday etc).
Saturday, February 6, 2010
Day 3 - chemo up and running.
Went to see my Dad today. Spent about three hours at the hospital. He had his bone marrow samples taken last evening - apparently, that was not a walk in the park. He was joking about it today that the tech was using the needle like a jack hammer looking for his bone.
While I was there we got some good tidbits of news - well, when you're in this position, you take every sliver of positive information you can get. Basically, they said his white cell count after his second feresis (can't spell that) session today was at 35,000 (down from 77,000 this morning and 55,000 mid session). That is great. That meant they could start the chemo this afternoon. We also heard that his red cell counts were good, so he didn't need a transfusion and/or another round of feresis. All good. Keep in mind, normal white blood cell counts are under 10,000. We still have a ways to go.
BUT, he was still running a temperature and that was a little concerning. They started running the anti nausea drugs and what I called a "pre wash" for the chemo around 3:15 and they actually got it all up and running around 3:45pm. I was there until 4:00pm. I just wanted to see it all get going and see what they were going to do.
It was a relief to see that the meds were getting administered. It means we're doing what we can to fight this son of a gun.
Tonight, my Mom called around 9:15 and said Dad had to move rooms. His heart was racing, so they were concerned enough to move him. Dad didn't want her to come down, but I am sure she wanted to. I went online (of course - you know me - doctor of the internet) and it said that rare side effects and reactions to the two drugs he was given (the chemo) was heart palpitations. They did numerous tests on his heart to make sure he could handle it all and the all came back fine, so I'm hoping that whatever they give him to settle it down, works over night.
So, he'll get three days of the drug cytarabine and 7 days of the drug Idarubicin (the first three days he'll get both drugs - so it's a 7 day course.)
Keepin' the faith to fight another day. I'm going to go back up tomorrow, I hope. It's my birthday and although, I'm really in no mood to celebrate, it will be a gift to visit my Dad and just keep living one day at a time. I'll take it.
Friday, February 5, 2010
shitty week
There are only so many "shitty" weeks in a lifetime that you remember, or that really matter. This one tops the list so far. My Dad has been ill and I'll spare you all the details, but he was admitted Wednesday night to Barnes-Jewish - the Siteman Cancer Center. They think he has acute myelogenous leukemia or AML. Now, there are several subtypes of this leukemia and they're trying to pin point what he has.
Yesterday, I visited for a couple hours while he was awaiting a port line to be put in his neck. He teared up when I walked in the room and I swear it was the worst thing. My Dad has always been the strong, tall, pillar of strength and now he was so beat down. He did sound better than on Monday and Tuesday when I talked to him, and he had his sense of humor with him - which is a curse and a blessing. : )
This disease has come out of the blue. I mean, it's really rocked our world and now I feel like the center of my world is this disease. It's new to us, so I can only pray that as my Dad starts treatment this weekend, I hope, that we all calm down a bit and find a little more peace and confidence that he's in the best care possible.
So, in the meantime, lift us up in your prayers.
Yesterday, I visited for a couple hours while he was awaiting a port line to be put in his neck. He teared up when I walked in the room and I swear it was the worst thing. My Dad has always been the strong, tall, pillar of strength and now he was so beat down. He did sound better than on Monday and Tuesday when I talked to him, and he had his sense of humor with him - which is a curse and a blessing. : )
This disease has come out of the blue. I mean, it's really rocked our world and now I feel like the center of my world is this disease. It's new to us, so I can only pray that as my Dad starts treatment this weekend, I hope, that we all calm down a bit and find a little more peace and confidence that he's in the best care possible.
So, in the meantime, lift us up in your prayers.
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