Well, after a week and a half, Christina is still in the hospital and we're not sure when she'll be able to go home at this point. They were able to get the stints in, without any problems; everything went well. The stints helped, from the standpoint that the kidneys are now able to move fluids to the bladder, but the kidneys are still not functioning as they should be. So, she will be having dialysis for at least the near term. She is having two hours today and three hours tomorrow. Until they see how she is responding to the dialysis, the doctors don't know how long it will need to continue. They are still hopeful that it will be temporary in nature, and that her kidneys will recover and return to functioning normally.
She continues to have good and bad days. Yesterday she was doing very well. She said she slept "awesome" the night before - the best she's slept in quite some time. So, she had a lot of energy (relatively speaking). Last night was different; she said she slept "like crap", so she's not as lively today, but doing OK. She has had some visitors, and I wish I could say that it's ok for everyone to come visit, but I'm not sure that would be wise. She's in the Critical Care unit, and when she's having dialysis they don't want her heart rate going up and down. So until things are a bit more stabilized, I'm going to ask that everyone, other than family, refrain for now. Hopefully she will begin feeling consistently better soon. I will provide an update as soon as that happens.
The next cycle of chemotherapy hasn't been scheduled yet, until they see how she responds to the dialysis. It's a balancing act at this point because she can't have the chemo until her body is able, but the sooner they can continue the chemo, the faster her body will be able. They were able to give her the Rituxan last week, along with a day of radiation, but the focus shifted to getting her kidney functions working properly before proceeding. Again, hopefully over the next couple of days she'll be doing much better, and we'll be able to move forward.
Jarrett and I are doing pretty good. He's been having some sleepovers, and has some more planned. We were able to make it to Dining with Dads last night, and he and I are going to see Pink Panther 2 this afternoon.
Keep the positive thoughts and prayers coming, and she enjoys the cards, magazines, and books when she has the energy to read them. Unfortunately in Critical Care they won't allow flowers, so those will have to wait.
That's it for now. Thanks again.
Saturday, February 7, 2009
Wednesday, February 4, 2009
Wednesday, Feb 4 Status
Christina is still in the hospital, and has been since last Wednesday/Thursday (see previous post). She's been receiving fluids via IV, in an effort to re-hydrate her, but yesterday they discontinued that because she was doing better, hydration-wise.
She was scheduled to start chemotherapy treatments this past Monday, but, because of her symptoms, those treatments didn't start. The mass is still pushing on her kidneys, ureters, vena cava, and other organs in her abdominal area, causing some of the symptoms that she's having. Since the ureters are being pushed on, it's causing some blockage which is preventing her kidneys from functioning like they should, which is to clean the blood and filter waste from it. With the kidneys not functioning fully, the chemotherapy drugs will not be cleared from her body, which would cause an excessive toxicity in her system.
So, they are going to do two things at this point; 1) install stints in the ureters, to allow the proper flow of urine to her bladder, and 2) radiation therapy to shrink the mass faster. The radiation will probably be started today, and the stints are scheduled for tomorrow afternoon (about a 20 minute, minimally invasive procedure thru the bladder). This will hopefully help all of the symptoms that she's having; shortness of breath, tightness in her stomach, and swollen legs, due to restricted blood flow back to her heart thru the vena cava (see below).
If all goes as planned, I think she will start her next cycle of chemotherapy next week. However, the Rituxan will probably be given today, because of the nature of the drug, and it's ability to just attack the CD20 B-cell Non-Hodgkins Lymphoma.
Please continue with your positive thoughts, and prayers for Christina and our family. We do appreciate it. Also, thanks so much for all of the kind offers, actions, and patience. I'm trying to utilize our support system, as needs arise.
Ken
She was scheduled to start chemotherapy treatments this past Monday, but, because of her symptoms, those treatments didn't start. The mass is still pushing on her kidneys, ureters, vena cava, and other organs in her abdominal area, causing some of the symptoms that she's having. Since the ureters are being pushed on, it's causing some blockage which is preventing her kidneys from functioning like they should, which is to clean the blood and filter waste from it. With the kidneys not functioning fully, the chemotherapy drugs will not be cleared from her body, which would cause an excessive toxicity in her system.
So, they are going to do two things at this point; 1) install stints in the ureters, to allow the proper flow of urine to her bladder, and 2) radiation therapy to shrink the mass faster. The radiation will probably be started today, and the stints are scheduled for tomorrow afternoon (about a 20 minute, minimally invasive procedure thru the bladder). This will hopefully help all of the symptoms that she's having; shortness of breath, tightness in her stomach, and swollen legs, due to restricted blood flow back to her heart thru the vena cava (see below).
If all goes as planned, I think she will start her next cycle of chemotherapy next week. However, the Rituxan will probably be given today, because of the nature of the drug, and it's ability to just attack the CD20 B-cell Non-Hodgkins Lymphoma.
Please continue with your positive thoughts, and prayers for Christina and our family. We do appreciate it. Also, thanks so much for all of the kind offers, actions, and patience. I'm trying to utilize our support system, as needs arise.
Ken
Friday, January 30, 2009
Quick Update
Just a quick update for today. Obviously, I changed the blog format again, as you can see. But, you'll also notice a link on the right side for 'Food Schedule'. This is an attempt to coordinate everyone who would like to bring food, because of all the requests.
Christina is currently in the hospital, because on Wednesday she starting having swelling in her legs again, some abdominal tightness, and was short of breath. We spent the night in the ER, they admitted her to the hospital around 3 AM Thursday (I got home about 4 AM), and she spent last night there as well. They were doing some additional tests last night and this morning, but at this point, it appears it was de-hydration. She does have a couple of clots in her legs. They are/will be giving her some blood thinners and other, to address those. Wednesday night they checked for clots in her lungs, and they were fine. She was in very good spirits last night. She was even cracking jokes for the first time in quite a while. That's it for now. I've got to run, but I will try to update as soon as I know more.
Christina is currently in the hospital, because on Wednesday she starting having swelling in her legs again, some abdominal tightness, and was short of breath. We spent the night in the ER, they admitted her to the hospital around 3 AM Thursday (I got home about 4 AM), and she spent last night there as well. They were doing some additional tests last night and this morning, but at this point, it appears it was de-hydration. She does have a couple of clots in her legs. They are/will be giving her some blood thinners and other, to address those. Wednesday night they checked for clots in her lungs, and they were fine. She was in very good spirits last night. She was even cracking jokes for the first time in quite a while. That's it for now. I've got to run, but I will try to update as soon as I know more.
Friday, January 23, 2009
Blog & Christina Update
As you may have noticed, I modified the blog again, just a bit. I had given everyone access to make posts, but it started causing some problems because of the sheer number of people. I received some e-mails that the blog was full, or something like that. So, I've changed it back, that only I have posting rights. The other posts that were there have been moved to comments. I guess you can do that when it's your blog....
Everyone can still make comments, so please continue to do so. For those who aren't "registered" with the blog service, you can comment as 'Name/URL', and just enter your name, or as 'Anonymous', and just put your name within the text of the comment, if you want to. To comment, just click the link that says "X Comments" right below this post. Let me know if you have problems.
I added the calendar at the bottom, and I entered the schedule of treatments along with some Dr. appointments, as we currently have scheduled. As of right now, the last round is scheduled for the middle of March. Obviously, that will depend on how Christina is responding to the treatments.
We've had so many people offer to bring food, I'm thinking that maybe we can use the calendar as a way to schedule that as well. I'll be working with a couple of people to figure that out.
Since everyone's been asking how I'm holding up, the answer is: pretty good. It's amazing how much something like this can turn your world upside down, but at the same time, make you realize how many people are there for you when you need them. Jarrett's had play dates, sleepover's, and even a movie date with an older woman. He said it was "awesome", but now he wants to open his own "Hotel for Dogs."
I would say that my biggest struggle is going to be balancing work with being available for Christina. Fortunately, my boss has been extremely flexible with all of this. This week I did not want to leave Christina home by herself, so I was able to work from home, and flex my schedule a bit (I've virtually been out of the office since before Christmas). Going forward, I'm not sure how she's going to feel, and whether Mary (Christina's mom) will be able to stay with her the whole time (Mary is just getting over the flu, herself), but I'm going to have to get back to the office next week for sure. This may be an area that I'll be needing help with, I'm just not sure yet. By the way, several people have offered to come over, or fly out from all over the country to stay with her (us). It is truly appreciated, but I'm not sure if it's needed yet, or how to schedule people, if needed. I do know that not all of you will fit in the guest room at once. :-) There is one group already scheduled (Denise, Clinton, Zuri and Nia), because their visit was planned long ago, and Christina can't wait to see Zuri and Nia (you too, Denise and Clinton, it's just not the same; sorry). Aside from that, we'll have to see how it goes.
Now, on to how Christina is doing currently. I'll say she's doing "pretty good" also. She did make it to Church last Sunday, but she was very tired by the time it ended. She also walked with me to pick up Jarrett at the bus yesterday. So, she's getting out and about a bit, but she still gets tired pretty easily. So far, she has had very little nausea, so we're praying that continues. Eating is still difficult, and she gets full pretty quickly, so we're praying that gets better. The swelling in her calves and feet is gone, so that's a great thing, but she's lost a lot of weight, so we'll just keep working on getting more food/calories in her.
We had a doctor appt on Wednesday, and they checked her blood counts. Her counts are low, but she's not in need of another transfusion at this point, so that's good. Since her white blood cell counts are low, we've got to be careful not to expose her to anyone who is sick. This has been a challenge because I've had a cough/cold, but I think it's drawing to a close. So, if you're wanting to come by, please refrain if you're not feeling well. We've got another doctor appt on Monday, to re-check her blood counts, so we'll see where we go from there.
I think that covers it for now. Again, thanks to you all for everything you're doing. Keep the thoughts, hopes, prayers coming. We appreciate it.
Ken
Everyone can still make comments, so please continue to do so. For those who aren't "registered" with the blog service, you can comment as 'Name/URL', and just enter your name, or as 'Anonymous', and just put your name within the text of the comment, if you want to. To comment, just click the link that says "X Comments" right below this post. Let me know if you have problems.
I added the calendar at the bottom, and I entered the schedule of treatments along with some Dr. appointments, as we currently have scheduled. As of right now, the last round is scheduled for the middle of March. Obviously, that will depend on how Christina is responding to the treatments.
We've had so many people offer to bring food, I'm thinking that maybe we can use the calendar as a way to schedule that as well. I'll be working with a couple of people to figure that out.
Since everyone's been asking how I'm holding up, the answer is: pretty good. It's amazing how much something like this can turn your world upside down, but at the same time, make you realize how many people are there for you when you need them. Jarrett's had play dates, sleepover's, and even a movie date with an older woman. He said it was "awesome", but now he wants to open his own "Hotel for Dogs."
I would say that my biggest struggle is going to be balancing work with being available for Christina. Fortunately, my boss has been extremely flexible with all of this. This week I did not want to leave Christina home by herself, so I was able to work from home, and flex my schedule a bit (I've virtually been out of the office since before Christmas). Going forward, I'm not sure how she's going to feel, and whether Mary (Christina's mom) will be able to stay with her the whole time (Mary is just getting over the flu, herself), but I'm going to have to get back to the office next week for sure. This may be an area that I'll be needing help with, I'm just not sure yet. By the way, several people have offered to come over, or fly out from all over the country to stay with her (us). It is truly appreciated, but I'm not sure if it's needed yet, or how to schedule people, if needed. I do know that not all of you will fit in the guest room at once. :-) There is one group already scheduled (Denise, Clinton, Zuri and Nia), because their visit was planned long ago, and Christina can't wait to see Zuri and Nia (you too, Denise and Clinton, it's just not the same; sorry). Aside from that, we'll have to see how it goes.
Now, on to how Christina is doing currently. I'll say she's doing "pretty good" also. She did make it to Church last Sunday, but she was very tired by the time it ended. She also walked with me to pick up Jarrett at the bus yesterday. So, she's getting out and about a bit, but she still gets tired pretty easily. So far, she has had very little nausea, so we're praying that continues. Eating is still difficult, and she gets full pretty quickly, so we're praying that gets better. The swelling in her calves and feet is gone, so that's a great thing, but she's lost a lot of weight, so we'll just keep working on getting more food/calories in her.
We had a doctor appt on Wednesday, and they checked her blood counts. Her counts are low, but she's not in need of another transfusion at this point, so that's good. Since her white blood cell counts are low, we've got to be careful not to expose her to anyone who is sick. This has been a challenge because I've had a cough/cold, but I think it's drawing to a close. So, if you're wanting to come by, please refrain if you're not feeling well. We've got another doctor appt on Monday, to re-check her blood counts, so we'll see where we go from there.
I think that covers it for now. Again, thanks to you all for everything you're doing. Keep the thoughts, hopes, prayers coming. We appreciate it.
Ken
Sunday, January 18, 2009
Sunday, January 18
Well, the first round is complete. I think Christina has more energy now, than at the beginning of the week. She has been up and about quite a bit more, and has actually been out for a social visit with Dinah, two doors down. If you attend Highlands Community Church, you may even see her today at the 9:30 service.
Various people have said that sometimes it takes a few days for the fatigue to set in, so we'll see how this week goes. With the extreme fatigue that she had at the start of this all, I'm hopeful that it will all get better from here on out. The swelling in her lower legs has improved dramatically. This was believed to be caused by the mass surrounding her aorta and restricting blood flow from her legs back to her heart, so maybe this is a sign that the treatments are already making progress. That's what I'm choosing to believe at this point.
As mentioned, up top this point Christina hasn't had any difficult side affects from the treatments, so we'll just hope and pray that this continues. Her white blood cell shot last night was a bit painful (of course), but so far not much bone pain, which is one of the possible side affects.
Thanks again, so much, to everyone for your thoughts, prayers, food, flowers, and support. This has made a HUGE difference. I have always believed that Christina is a very un-selfish person, and it's even more evident to me now, by the amount of un-selfish deeds and love being offered back to her and our family, in this difficult time. Thanks!
Well, last weekend we took a journey to Jarrett's cousin Heather's house, for a haircutting extravaganza. Christina, to prepare for her potential hair loss, and Jarrett & I, to show support. If you know Jarrett, you know he loves his long hair, so that was a big step for him. He thinks it looks cool now, thanks to Heather's skills. As for me, not a huge sacrifice, but you'd be amazed at how much warmth you get from even a little bit of hair. Anyway, I'm going to attempt to attach the before and after pics.
As you probably noticed, I made some changes to the blog format. I'm experimenting when I have some time. Let me know if it's working, or if you have comments.
Talk to you soon.
Ken
Various people have said that sometimes it takes a few days for the fatigue to set in, so we'll see how this week goes. With the extreme fatigue that she had at the start of this all, I'm hopeful that it will all get better from here on out. The swelling in her lower legs has improved dramatically. This was believed to be caused by the mass surrounding her aorta and restricting blood flow from her legs back to her heart, so maybe this is a sign that the treatments are already making progress. That's what I'm choosing to believe at this point.
As mentioned, up top this point Christina hasn't had any difficult side affects from the treatments, so we'll just hope and pray that this continues. Her white blood cell shot last night was a bit painful (of course), but so far not much bone pain, which is one of the possible side affects.
Thanks again, so much, to everyone for your thoughts, prayers, food, flowers, and support. This has made a HUGE difference. I have always believed that Christina is a very un-selfish person, and it's even more evident to me now, by the amount of un-selfish deeds and love being offered back to her and our family, in this difficult time. Thanks!
Well, last weekend we took a journey to Jarrett's cousin Heather's house, for a haircutting extravaganza. Christina, to prepare for her potential hair loss, and Jarrett & I, to show support. If you know Jarrett, you know he loves his long hair, so that was a big step for him. He thinks it looks cool now, thanks to Heather's skills. As for me, not a huge sacrifice, but you'd be amazed at how much warmth you get from even a little bit of hair. Anyway, I'm going to attempt to attach the before and after pics.
As you probably noticed, I made some changes to the blog format. I'm experimenting when I have some time. Let me know if it's working, or if you have comments.
Talk to you soon.
Ken
Wednesday, January 14, 2009
Wednesday, Jan 14, 2009
Here's the first update since the e-mail I sent.
Monday Christina had her porta-cath installed. Went well, but a long day. We were at the surgery center at 8:00 for a 10:00 surgery, but her platelets were a bit too low, so they had to start another platelet infusion before they could start installing the porta-cath. I think we finally got home about 2:30. Lesson for the day - make sure I donate blood this year. You never know who might need it, and when.
Yesterday she had her first treatment; a drug called Rituxan. This day was even longer. We had to be there at 7:30 AM, because this drug takes at least 5 hours to administer, if no reactions. Virtually everybody has a reaction of some sort, and Christina was no exception. After a short intermission from the Rituxan (about an hour or so) along with some additional antihistamines, etc. Christina did just fine and we were home a little after 8:00 PM. Lesson for this day - hang on to your friends and family. They are very helpful when it comes to things like cleaning, cooking, watching Jarrett, providing support, bringing you food, letting Jarrett sleep over and taking him to school so you can make a 7:30 appt, and picking him up at the bus, entertaining him, and receiving dinner made by another friend because you couldn't get home until after 8:00.
Today........Well, unfortunately it's scheduled to be another long day. PET scan at 8:30 (2-3 hours), then the first chemotherapy agents start today, at 1:30. Initially, doctor Hersman was thinking of administering Cytoxan and Fludarabine for the chemotherapy, but after discussing Christina's case further, with Dr. Pagel from the Seattle Cancer Care Alliance, they've all agreed that one day of Novantrone with Fludarabine (today), followed by 2 more days of Fludarabine would be best. The chemotherapy is only supposed to take a couple of hours, so our days of treatment should start to get shorter. We'll see. We'll do whatever it takes.
FYI - the schedule for the rest of the week is as follows:
Thursday - chemotherapy @ 2:30
Friday - chemotherapy @ 2:00
Saturday - white blood cell booster injection @ 4:00
It will be at least a few weeks before the next cycle, so hopefully she'll start to feel much better between cycles.
Thanks again for everyone's support in this.
Ken
Monday Christina had her porta-cath installed. Went well, but a long day. We were at the surgery center at 8:00 for a 10:00 surgery, but her platelets were a bit too low, so they had to start another platelet infusion before they could start installing the porta-cath. I think we finally got home about 2:30. Lesson for the day - make sure I donate blood this year. You never know who might need it, and when.
Yesterday she had her first treatment; a drug called Rituxan. This day was even longer. We had to be there at 7:30 AM, because this drug takes at least 5 hours to administer, if no reactions. Virtually everybody has a reaction of some sort, and Christina was no exception. After a short intermission from the Rituxan (about an hour or so) along with some additional antihistamines, etc. Christina did just fine and we were home a little after 8:00 PM. Lesson for this day - hang on to your friends and family. They are very helpful when it comes to things like cleaning, cooking, watching Jarrett, providing support, bringing you food, letting Jarrett sleep over and taking him to school so you can make a 7:30 appt, and picking him up at the bus, entertaining him, and receiving dinner made by another friend because you couldn't get home until after 8:00.
Today........Well, unfortunately it's scheduled to be another long day. PET scan at 8:30 (2-3 hours), then the first chemotherapy agents start today, at 1:30. Initially, doctor Hersman was thinking of administering Cytoxan and Fludarabine for the chemotherapy, but after discussing Christina's case further, with Dr. Pagel from the Seattle Cancer Care Alliance, they've all agreed that one day of Novantrone with Fludarabine (today), followed by 2 more days of Fludarabine would be best. The chemotherapy is only supposed to take a couple of hours, so our days of treatment should start to get shorter. We'll see. We'll do whatever it takes.
FYI - the schedule for the rest of the week is as follows:
Thursday - chemotherapy @ 2:30
Friday - chemotherapy @ 2:00
Saturday - white blood cell booster injection @ 4:00
It will be at least a few weeks before the next cycle, so hopefully she'll start to feel much better between cycles.
Thanks again for everyone's support in this.
Ken
Wednesday, January 7, 2009
Original E-mail
*******Original e-mail*********
In order to notify as many people as possible, as quickly as possible, I thought I would send out an e-mail, in lieu of trying to call everyone.
For some of you, this will be the first time you're hearing of this. I apologize. Christina has been feeling ill for almost 3 months now, with a wide variety of symptoms (body aches, stomach pain, gum infection and others), and she would feel good sometimes and bad sometimes. Finally, after a CT scan and blood tests on 12/30, they found that she had a "mass" in her abdominal cavity (area behind her abdomen) and low platelet and red blood cell levels. She had a biopsy of the mass last Friday and bone marrow biopsy on Monday. We got the results from these yesterday, and had a consultation with the Oncologist last night. I don't have all of my notes with me, so some of this will not be exact. She has been diagnosed with Follicular Lymphoma, which is a low-grade Lymphoma.
At this point, her treatments will be a combination of a medication called Rituxan and chemotherapy. This treatment will probably begin either later this week or first thing next week. The treatments will be something like: 1st day - Rituxan, 2nd, 3rd and 4th day - chemotherapy. This will then be repeated in 3-4 weeks and she will probably require 3-4 treatment cycles. The doctors have all said that Lymphoma is "very treatable".
For those interested, her doctors are: John A. Hersman and Jonathan C. Britell of Southlake Clinic, who will be reviewing her treatments with John M. Pagel, an assistant professor of Medicine, in the UW Division of Oncology and an assistant member at the Fred Hutchinson Cancer Research Center. That's about it for now. Thank you so much for all of your phone calls and thoughts and prayers. Please be patient with us (me). I'm trying to keep people informed as we learn more. As you all know, Christina has A LOT of good friends, and caring family, so I'm doing the best I can.
Thanks, Ken
In order to notify as many people as possible, as quickly as possible, I thought I would send out an e-mail, in lieu of trying to call everyone.
For some of you, this will be the first time you're hearing of this. I apologize. Christina has been feeling ill for almost 3 months now, with a wide variety of symptoms (body aches, stomach pain, gum infection and others), and she would feel good sometimes and bad sometimes. Finally, after a CT scan and blood tests on 12/30, they found that she had a "mass" in her abdominal cavity (area behind her abdomen) and low platelet and red blood cell levels. She had a biopsy of the mass last Friday and bone marrow biopsy on Monday. We got the results from these yesterday, and had a consultation with the Oncologist last night. I don't have all of my notes with me, so some of this will not be exact. She has been diagnosed with Follicular Lymphoma, which is a low-grade Lymphoma.
At this point, her treatments will be a combination of a medication called Rituxan and chemotherapy. This treatment will probably begin either later this week or first thing next week. The treatments will be something like: 1st day - Rituxan, 2nd, 3rd and 4th day - chemotherapy. This will then be repeated in 3-4 weeks and she will probably require 3-4 treatment cycles. The doctors have all said that Lymphoma is "very treatable".
For those interested, her doctors are: John A. Hersman and Jonathan C. Britell of Southlake Clinic, who will be reviewing her treatments with John M. Pagel, an assistant professor of Medicine, in the UW Division of Oncology and an assistant member at the Fred Hutchinson Cancer Research Center. That's about it for now. Thank you so much for all of your phone calls and thoughts and prayers. Please be patient with us (me). I'm trying to keep people informed as we learn more. As you all know, Christina has A LOT of good friends, and caring family, so I'm doing the best I can.
Thanks, Ken
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