Dad had a rough night last night because his joints and bones started really aching and hurting. He's really stiff today and was pretty uncomfortable. They think it is his white blood cells returning but when I pressed Dad for more info, he didn't have any and he just said, "that's what they think." I was thinking, "What? Nobody has ever had this happen and they can't tell us more?"
He got blood work back while I was there, but the only number missing was the White cell count (weird). They doubted they would see much change in the number today, but hopefully tomorrow. My concern is if the number jumps TOO MUCH - it could be a not so great sign.
Let's keep our fingers crossed.
They have him on some mild pain medication to make him comfortable and we're just hoping it subsides soon.
Two of Dad's Rugby buddies came by while I was there - THANKS! I think it really cheered him up to see you guys! Just having someone else to visit with is always a bonus!
Keep the faith people! Pray for zero blast tolerance in my Dad's system! We want those buggers out of here. Thanks for checking in!
Sunday, May 16, 2010
Friday, May 14, 2010
Day 15
It's been a crazy week. Carl went up to visit Dad after the Cardinal's day game yesterday. The Cards lost - so we've had a banner week at the ballpark! Not. Mom and I brought home a loser on Tuesday and Carl didn't do us any good yesterday. Let's hope the Girl Scouts can do better on Monday night when Carl takes Lydia & Quinn.
Just got off the phone with Dad. He had to go because the doctor came in, but he sounded great. He had a pretty good night. He did need blood yesterday afternoon, but it had been 5 days since he got it last. That is really good.
His dizziness is dissipating, so I know he got up and walked yesterday - which makes you feel so much better just to get out of the hospital room.
Thankfully, this round he didn't suffer any mouth sores, so he's been able to maintain his weight and eat on his own.
They keep saying he's doing really well, so we'll go with that! Right now we're waiting for his blood counts to come back. Yesterday his WBCs were still at .1 - he needs to recover those cells to get an immune system back before they let him leave -(which makes complete sense).
Basically, though, if you can visit - DO IT. The company makes the days go by faster. If you can't, send a note or card - it's always good to get mail. He's in room 6907 if you want to call. The number is 314-747-6907.
Thanks for checking in with us. No news is always good news. : )
Just got off the phone with Dad. He had to go because the doctor came in, but he sounded great. He had a pretty good night. He did need blood yesterday afternoon, but it had been 5 days since he got it last. That is really good.
His dizziness is dissipating, so I know he got up and walked yesterday - which makes you feel so much better just to get out of the hospital room.
Thankfully, this round he didn't suffer any mouth sores, so he's been able to maintain his weight and eat on his own.
They keep saying he's doing really well, so we'll go with that! Right now we're waiting for his blood counts to come back. Yesterday his WBCs were still at .1 - he needs to recover those cells to get an immune system back before they let him leave -(which makes complete sense).
Basically, though, if you can visit - DO IT. The company makes the days go by faster. If you can't, send a note or card - it's always good to get mail. He's in room 6907 if you want to call. The number is 314-747-6907.
Thanks for checking in with us. No news is always good news. : )
Tuesday, May 11, 2010
Day 12 - Cards Game - a bust
Visited with Mom & Dad at the hospital earlier today. Took Dad a couple BBQd pork steaks to knaw on, a chocolate shake and some birthday cake of Lydia's. I hope he ate some of it for Dinner. He ate lunch while I was there and did great! The hamburger he had smelled soooo good.
He is still dealing with some dizziness and low energy levels - which that is normal. His white cells went up a tad today - from .1 to .2 - that could be the start of a good thing (which is his body bouncing back from the chemo). Let's hope it is.
Otherwise, he's working really hard to keep the fluid intake going so he doesn't have to go back on the IV bag, but if he does - he does. He seemed in good spirits and overall, doing okay.
Mom and I went to the Cardinal's game tonight and had a nice time. They lost, but oh well. It was just nice to enjoy the evening outside and her company. We always have fun together. We both agreed that this is not what we thought we would be doing at this point in either of our lives (dealing with leukemia), but that when you look around - even though our hand of cards isn't great, it could be much worse. Be continually thankful for each of your blessings.
Thanks for checking in - send up a prayer for the pork steaks to look appetizing to Dad so he'll eat them for strength. : )
He is still dealing with some dizziness and low energy levels - which that is normal. His white cells went up a tad today - from .1 to .2 - that could be the start of a good thing (which is his body bouncing back from the chemo). Let's hope it is.
Otherwise, he's working really hard to keep the fluid intake going so he doesn't have to go back on the IV bag, but if he does - he does. He seemed in good spirits and overall, doing okay.
Mom and I went to the Cardinal's game tonight and had a nice time. They lost, but oh well. It was just nice to enjoy the evening outside and her company. We always have fun together. We both agreed that this is not what we thought we would be doing at this point in either of our lives (dealing with leukemia), but that when you look around - even though our hand of cards isn't great, it could be much worse. Be continually thankful for each of your blessings.
Thanks for checking in - send up a prayer for the pork steaks to look appetizing to Dad so he'll eat them for strength. : )
Monday, May 10, 2010
Day 11 - Happy Birthday Lydia
Today was a busy day. I went on Quinn's field trip to the zoo in the morning and Carl took the little ones to preschool. He was snack sneaker for Lydia's class for her birthday too! : )
I left the zoo around 1:10 and went to see Dad at the hospital. He was sitting up in his chair when I arrived. I thought he looked great, but he was a litle discouraged today because his nausea hasn't dissipated and his blood pressure was giving the nurses fits. At one point it was 80 over 40! That is not good.
I stayed a while, visited, took a walk with my Mom, and headed home to finish the birthday dinner and get the birthday festivities in order.
Yesterday, his blood came back good and no blasts were present. YEAH. That's all good. I just wish this dizziness issue would subside.
Lydia had a great day though. I can't believe she is 5. She's thrilled, of course. I'm in denial, myself. Probably a good place to be. : )
Thank you for checking in. Keep the prayers alive and well - pray not only for my Dad, but for all afflicted by illness. As I was leaving the hospital a young man was leaning on his father while he walked to the car. His mother was in front of him and he was very unsteady. You could tell he was a skeleton under his clothing. He wore a mask to protect him from germs. He could just as well have leukemia as anyone and probably did. He looked so frail, so young, so sick. I lifted up a prayer right behind him as I made it through the building to my car. I just know God has a purpose in our lives, but I don't know why these illnesses consume so many and become the cross to bear for so many families? What purpose is there in this suffering? In any suffering?
Anyways, not to be Debbie Downer, but pray for all who are sick. Please. It really was a wonderful day otherwise. : )
I left the zoo around 1:10 and went to see Dad at the hospital. He was sitting up in his chair when I arrived. I thought he looked great, but he was a litle discouraged today because his nausea hasn't dissipated and his blood pressure was giving the nurses fits. At one point it was 80 over 40! That is not good.
I stayed a while, visited, took a walk with my Mom, and headed home to finish the birthday dinner and get the birthday festivities in order.
Yesterday, his blood came back good and no blasts were present. YEAH. That's all good. I just wish this dizziness issue would subside.
Lydia had a great day though. I can't believe she is 5. She's thrilled, of course. I'm in denial, myself. Probably a good place to be. : )
Thank you for checking in. Keep the prayers alive and well - pray not only for my Dad, but for all afflicted by illness. As I was leaving the hospital a young man was leaning on his father while he walked to the car. His mother was in front of him and he was very unsteady. You could tell he was a skeleton under his clothing. He wore a mask to protect him from germs. He could just as well have leukemia as anyone and probably did. He looked so frail, so young, so sick. I lifted up a prayer right behind him as I made it through the building to my car. I just know God has a purpose in our lives, but I don't know why these illnesses consume so many and become the cross to bear for so many families? What purpose is there in this suffering? In any suffering?
Anyways, not to be Debbie Downer, but pray for all who are sick. Please. It really was a wonderful day otherwise. : )
Sunday, May 9, 2010
Day 10 - No news is Good news
I can't believe the past three days have flown by and I've had nothing earth shattering to report. I spent the better part of the end of the week getting ready for Lydia's birthday party on Saturday and Mother's Day.
Today, when I visited Dad, he was looking great! He's unhooked from the IV now unless he is getting his antibiotic IV fluid or other medication. His White cells (WBC) are at .1 and his platelets were at 8 today. He did get blood transfused last night, so his hemoglobin and hematocrit were good today. This evening he was going to be getting platelets.
Otherwise, all things Dad are status quo. We are all afraid to be so optimistic about the lack of side effects he's experienced this round of chemo. He hasn't had the red, swollen, peeled hands or the blisters in his mouth. He hasn't even suffered the extreme water retention. We just say everyday without those things happening, or starting, is a good day!
His appetite is relatively good. I brought him a shake today and a BBQ pork steak and he downed both with out a hitch. His appetite suffered last round too, if you remember.
Basically, we're just praying it stays this good.
Thanks for checking in with us. Keep the prayers coming. They must be working because we're doing really well right now. : )
Today, when I visited Dad, he was looking great! He's unhooked from the IV now unless he is getting his antibiotic IV fluid or other medication. His White cells (WBC) are at .1 and his platelets were at 8 today. He did get blood transfused last night, so his hemoglobin and hematocrit were good today. This evening he was going to be getting platelets.
Otherwise, all things Dad are status quo. We are all afraid to be so optimistic about the lack of side effects he's experienced this round of chemo. He hasn't had the red, swollen, peeled hands or the blisters in his mouth. He hasn't even suffered the extreme water retention. We just say everyday without those things happening, or starting, is a good day!
His appetite is relatively good. I brought him a shake today and a BBQ pork steak and he downed both with out a hitch. His appetite suffered last round too, if you remember.
Basically, we're just praying it stays this good.
Thanks for checking in with us. Keep the prayers coming. They must be working because we're doing really well right now. : )
Thursday, May 6, 2010
Day 7
There is nothing much to report today.
Dad will get platelets tonight, but his red cells are holding, so no blood transfusions tonight (which surprised me).
He had a little nausea today and dizziness along with semi-low blood pressure. His heart is in a-fib again, but that hasn't changed. The important thing about the a-fib rhythm is that it doesn't "flutter" - it's out of whack, but it's consistant.
He is eating - or trying to, even though he doesn't feel like it, which is good.
We are all a little bummed about the weekend coming up. We had great plans to all get together on Mother's Day before Dad was supposed to go in the hospital on the 10th. That and we're playing trivia tomorrow night as a team - sans Dad now (which will really stink. I wonder if they'd notice if we used our cells to have him at the table? ).
I know it has hit my Mom hard. Though we're grateful he went in early verses later to control the leukemia, it's still disappointing.
Thanks for checking in!
Dad will get platelets tonight, but his red cells are holding, so no blood transfusions tonight (which surprised me).
He had a little nausea today and dizziness along with semi-low blood pressure. His heart is in a-fib again, but that hasn't changed. The important thing about the a-fib rhythm is that it doesn't "flutter" - it's out of whack, but it's consistant.
He is eating - or trying to, even though he doesn't feel like it, which is good.
We are all a little bummed about the weekend coming up. We had great plans to all get together on Mother's Day before Dad was supposed to go in the hospital on the 10th. That and we're playing trivia tomorrow night as a team - sans Dad now (which will really stink. I wonder if they'd notice if we used our cells to have him at the table? ).
I know it has hit my Mom hard. Though we're grateful he went in early verses later to control the leukemia, it's still disappointing.
Thanks for checking in!
Wednesday, May 5, 2010
Day 6 - chemo completed
Just a warning - this could be a long one! : )
Dad completed this round of chemo this morning - alleluia! He's still suffering very few side effects, but we are all expecting that to pick up over the weekend and next week.
Talked to my Mom tonight and she said Dr. Westerfeld came in today (he's their primary doctor for all of this) and he was very positive and pleased with Dad's progress. The blood work shows that Dad's WBCs are down to .1 - which is pretty much nothing. The fact that he was at 40 last Friday and is already so down is a great sign that the "blasts" are responding to the chemo and responding well.
Apparently, the biopsy from a week ago came back and when Dad was re-admitted last Friday, his blasts were 40% of his bone marrow composition - which is not good. The only comparison you can make is that when we started all this, his first bone marrow biopsy in February showed his blasts were at 87%, so although the leukemia had returned last week, they caught it well before it had reached the stage we started at.
The doctor thought Dad wouldn't need another biopsy until he got home in a month or so. Dad told him that his goal is to be home for Memorial Day. The doctor said that might be very optimistic. Does this guy even know my Dad? If he has anything to say about it, he'll be home.
I asked Mom tonight about the bone marrow transplant and what that will do for us in truth. She explained that right now, the type of leukemia Dad has becomes increasingly resistant to the chemo and therefore chemo becomes obsolete as a treatment regimen the more you use it. The donor cells from the transplant will hopefully graft and fight off the leukemia cells that are resistant to the chemo and reproduce healthy cells. This could buy us years. I was happy to hear that, of course, since I didn't really know before this and didn't want to really ask either. We're all banking on this working.
So, the plan for now, is get through this recovery period from the chemo and go home for a week. Then Dad will come back in, re-do chemo, but a different kind, then go straight into transplant. This will be early to mid-June probably.
For now, we're grateful for today. It's funny but I used to be thankful for so many things - extravagant things, now I wake up thankful to be just opening my eyes to see another day. That's it. The basics.
When life hands you chaos, we all fall into survival mode and that means simplify. That would be why I just signed my kid up for swim team, the twins and Lydia up for swim lessons, am juggling two softball schedules and practices, dance classes, an upcoming recital, and school winding down - I've simplified alright! NOT! Well, maybe that part of my life isn't so simple, but my prayer certainly is - Lord grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
Keep the faith, keep up your thoughts and prayers for my family, and most of all take care of you.
Dad completed this round of chemo this morning - alleluia! He's still suffering very few side effects, but we are all expecting that to pick up over the weekend and next week.
Talked to my Mom tonight and she said Dr. Westerfeld came in today (he's their primary doctor for all of this) and he was very positive and pleased with Dad's progress. The blood work shows that Dad's WBCs are down to .1 - which is pretty much nothing. The fact that he was at 40 last Friday and is already so down is a great sign that the "blasts" are responding to the chemo and responding well.
Apparently, the biopsy from a week ago came back and when Dad was re-admitted last Friday, his blasts were 40% of his bone marrow composition - which is not good. The only comparison you can make is that when we started all this, his first bone marrow biopsy in February showed his blasts were at 87%, so although the leukemia had returned last week, they caught it well before it had reached the stage we started at.
The doctor thought Dad wouldn't need another biopsy until he got home in a month or so. Dad told him that his goal is to be home for Memorial Day. The doctor said that might be very optimistic. Does this guy even know my Dad? If he has anything to say about it, he'll be home.
I asked Mom tonight about the bone marrow transplant and what that will do for us in truth. She explained that right now, the type of leukemia Dad has becomes increasingly resistant to the chemo and therefore chemo becomes obsolete as a treatment regimen the more you use it. The donor cells from the transplant will hopefully graft and fight off the leukemia cells that are resistant to the chemo and reproduce healthy cells. This could buy us years. I was happy to hear that, of course, since I didn't really know before this and didn't want to really ask either. We're all banking on this working.
So, the plan for now, is get through this recovery period from the chemo and go home for a week. Then Dad will come back in, re-do chemo, but a different kind, then go straight into transplant. This will be early to mid-June probably.
For now, we're grateful for today. It's funny but I used to be thankful for so many things - extravagant things, now I wake up thankful to be just opening my eyes to see another day. That's it. The basics.
When life hands you chaos, we all fall into survival mode and that means simplify. That would be why I just signed my kid up for swim team, the twins and Lydia up for swim lessons, am juggling two softball schedules and practices, dance classes, an upcoming recital, and school winding down - I've simplified alright! NOT! Well, maybe that part of my life isn't so simple, but my prayer certainly is - Lord grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
Keep the faith, keep up your thoughts and prayers for my family, and most of all take care of you.
Tuesday, May 4, 2010
Day 5 - last dose of chemo
Well, yesterday was a rough day. With Dad running his temperature and his blood pressure going all whacky, he was realllly out of it. Today, though, when I visited, he was great. We worked on a jigsaw puzzle for a while and he ate some lunch. He looked fantastic.
He took 7 laps around the halls today, which is over 1/2 a mile. He couldn't even do one when he was in the hospital before without a break.
Tonight is his last dose of chemotherapy this round. YEAH!
He is starting to develop some mouth sores again, which is expected, but we had hoped against all hopes that he wouldn't.
The doctor did say that the fever yesterday was a good thing. He said that when you have a fever, your body is breaking up the leukemia blasts, so basically, the worse you feel, the better your body is fighting. So, you want to feel like dog spit - great!
We're gearing up around here for Lydia's birthday. I can't believe she'll be 5 on Monday! We're having family over on Saturday for Mother's Day and her birthday. I'm looking forward to it, really.
I am doing Muffins with Moms tomorrow at preschool with the little ones, then I am going to try to run up to the hospital for an hour - so hopefully, I can report another "good" day then.
Night! Sweet dreams! God bless.
He took 7 laps around the halls today, which is over 1/2 a mile. He couldn't even do one when he was in the hospital before without a break.
Tonight is his last dose of chemotherapy this round. YEAH!
He is starting to develop some mouth sores again, which is expected, but we had hoped against all hopes that he wouldn't.
The doctor did say that the fever yesterday was a good thing. He said that when you have a fever, your body is breaking up the leukemia blasts, so basically, the worse you feel, the better your body is fighting. So, you want to feel like dog spit - great!
We're gearing up around here for Lydia's birthday. I can't believe she'll be 5 on Monday! We're having family over on Saturday for Mother's Day and her birthday. I'm looking forward to it, really.
I am doing Muffins with Moms tomorrow at preschool with the little ones, then I am going to try to run up to the hospital for an hour - so hopefully, I can report another "good" day then.
Night! Sweet dreams! God bless.
Monday, May 3, 2010
Day 4
Dad started the day out feeling pretty good, but by 1:00 pm was down and out with fever, chills, the shakes and a little delirium. He was running a good temp and his blood pressure was up to 180/80. His WBCs were down to .9 from 10 yesterday!
They are pretty sure he's fighting some kind of infection. He's on antibiotics and everything else.
I am hoping Mom reports later tonight that the rest of the day went better than the afternoon.
Fevers are always a worry, but Dad has run a low grade one everytime he's had chemo. This one is a little concerning because it is higher, but I'm hoping it's just par for the course.
Keep checking in on us! : )
They are pretty sure he's fighting some kind of infection. He's on antibiotics and everything else.
I am hoping Mom reports later tonight that the rest of the day went better than the afternoon.
Fevers are always a worry, but Dad has run a low grade one everytime he's had chemo. This one is a little concerning because it is higher, but I'm hoping it's just par for the course.
Keep checking in on us! : )
Sunday, May 2, 2010
Day 3
Dad was pretty run down today and slept mostly, Mom said. The combination of chemo and the crazy hours they make you keep in the hospital had him tuckered out.
When I got there today at 5:00, he was the perkiest he'd been all day. Tonight is the "hump night" for chemo - dose 3 out of 5, so that's a good milestone to recognize!
Dad's numbers were showing declining white cells today down from 30 yesterday to 10 today - quite a jump. There is still some speculation that his WBCs jumped so high because of the steroids he was on for his gout, but until we get the biopsy results we won't really know how much of the leukemia had come back before the chemo was started. I know I'm wanting to know the blast number from that biopsy - but so far, no numbers. Probably has a lot to do with the weekend.
Dad's appetite took a dive today, so that is a bummer, but not unexpected. Before I left, he ate a ding dong and some cheesecake. Hey! If you need calories, and he needs them, why not live it up! : )
See you later!
Tomorrow William is getting tubes put in and his adenoids out, so I won't be visiting Dad until Tuesday.
When I got there today at 5:00, he was the perkiest he'd been all day. Tonight is the "hump night" for chemo - dose 3 out of 5, so that's a good milestone to recognize!
Dad's numbers were showing declining white cells today down from 30 yesterday to 10 today - quite a jump. There is still some speculation that his WBCs jumped so high because of the steroids he was on for his gout, but until we get the biopsy results we won't really know how much of the leukemia had come back before the chemo was started. I know I'm wanting to know the blast number from that biopsy - but so far, no numbers. Probably has a lot to do with the weekend.
Dad's appetite took a dive today, so that is a bummer, but not unexpected. Before I left, he ate a ding dong and some cheesecake. Hey! If you need calories, and he needs them, why not live it up! : )
See you later!
Tomorrow William is getting tubes put in and his adenoids out, so I won't be visiting Dad until Tuesday.
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