"What a difference a week makes." There have been so many times we could say that these past four months, with all the ups and downs. Unfortunately, a good portion of them have been for the worse. I so much prefer saying it after an upswing than down. This time last week Courtney was in the middle of her four night stay in the hospital. She was feeling pretty sore and achy, and still battling frequent nausea. Last Thursday night she was just receiving her last bag of Foscarnet, and was being administered about three other medications via her catheter. Flash forward to one week later and she’s in her own home, in her own bed, not hooked up to any IV bags, and more than five days removed from her last serious bout of nausea.
It’s been a really good week for Courtney. Her appetite is back full force, the nausea is all but gone, and the abdominal pain is but a distant memory. She’s had two visits to the clinic this week, Monday and today. Both of these visits were long, but rewarding as we came away with good news both times.
Monday’s visit was fairly routine, as they checked her blood levels and did a quick physical. All of her counts looked really good, and there really wasn’t much to report. The past few days she’s been up and about a little more each day. Little by little she’s been trying to do the things that she considers “normal,” i.e. go upstairs, play with the kids, help with homework, do some laundry, etc. Her biggest complaint has been fatigue and muscle soreness – no doubt caused by the fact that she’s just beginning to use muscles again that have been used sparingly the past few months. She’s been doing a good job of balancing the effort to regain her strength with getting the rest she needs to recover from those efforts.
Today’s visit went even better than Monday’s. We had a good visit with Dr. V. who was genuinely excited with Courtney’s progress and overall well-being. It had been a while since she saw Courtney smiling and not feeling miserable. She was also very pleased with the blood results, as they continue to hold steady. The best part of the day came when we asked her how many more bone marrow biopsies Courtney would need during this next year. The answer was two: one around D+100 and one more in a year! That news really made Courtney smile. We were thinking the next one would come much sooner than that and they would be much more frequent.
Dr. V also said Courtney was doing so well that she wouldn’t need to see her again until next week. Yah!! The visits aren’t bad, and they’ve been, for the most part, very useful, but they’re usually so long and somewhat tiring. So, she’s more than happy do go a few days without going to the clinic or seeing any doctors – especially if she’s feeling well enough that she doesn’t need to see any doctors. It’s just one more happy milestone that indicates she’s really on the path to recovery. A week ago this fact seemed doubtful. Now we truly know how far she’s come, and we’re grateful that it only took a week for her to turn around so dramatically.
Courtney
taken 8/4/07
Courtney and her kids
taken 8/4/07
Thursday, January 24, 2008
Saturday, January 19, 2008
D + 38 – Home Again
When Tuesday’s clinic visit came, we figured it would be a relatively short visit. That turned into what we thought would be an overnight stay at the hospital so they could run a couple of tests the next day. Then one night turned into two which quickly became three. Finally, after four nights in the hospital, Courtney is back in her own bed.
This was a long week made longer with uncertainty. Each day brought with it more questions that seemed to take forever to get answered. When is the EGD? When do we get results? Can Courtney go home? What’s causing the nausea? Will there be more tests? Can Courtney go home tomorrow? Is that a new medication? What are we waiting for? When can we talk to a doctor? Why are we here?
Eventually most of the questions were answered, and Courtney’s condition slowly improved. Her blood counts took a turn for the better. The pain she had been feeling just below her ribs subsided. And, the nausea, that had been so persistently bothering her for the past week, finally relented today.
Here’s a quick recap of what transpired since Wednesday:
Thursday – Courtney finally underwent the EGD (For those of you wonder how to pronounce “Esophagogastroduodenoscopy”, here’s the pronunciation - ĕ-sof′ă-gō-gas′trō-dū′ō-den-os′kŏ-pē). Other than the fact that Courtney’s resistance to Versed caused her to fight the nurses as they forced the scope down her throat, the procedure went well. The doctor’s report actually includes the statement, “After adequate conscious sedation was achieved, the patient was intubated and the scope advanced under direct visualization to the third part of duodenum.” I’m not sure how they define “adequate.” I suppose they thought Courtney wouldn’t remember it. I think that’s usually the case with the “conscious sedation.” Anyway, they got the information they were looking for, and in the process took some nice pictures of Courtney’s innards. (Not many people can say they’ve seen their duodenum.) The verdict – Courtney has gastric paresis and acute gastritis. Given the recent chemotherapy and all the meds she’s been taken, neither of these was a surprise. In the process, they took a couple of biopsies. These results won’t be back for a few days.
After the procedure, Dr. V. started Courtney on the steroid Prednisone. This is used to counteract the GVHD, if any, and hopefully help her feel much better. Unfortunately, it has the unpleasant side effect of causing restlessness, and Courtney didn’t sleep well Thursday night.
Friday – First official day to be off the Foscarnet. Thank goodness. Hopefully she won’t have to revisit this drug. And hopefully we see her condition steadily improve. Basically Friday was spent weaning Courtney off of the IV meds they had been giving her since Tuesday. By “weaning” I mean switching to an oral form. They want to make sure she keeps them all down before sending her home. Right now, their biggest concern is that she consistently gets her antibiotics and Prograff (anti-GVHD drug). They really don’t want these to come back up or for her not to take them because she feels too nauseous. So, one more night in the hospital. And it was NOT a fun night.
The night was long because she had a bad reaction to another drug. Add Meclizine to the list. Dr. V. decided to try it to help her nausea since the scopalomine patch didn't seem to be helping that much. She took her first dose yesterday afternoon without problems. However, her second dose, given around midnight last night, made her react much the same way compazine did back in October. Skin crawling, muscle twitching, painful, irritating, etc. Unfortunately, the nurse had to page the doctor to get permission to give her benedryl. So, it took a little while to get and took a while longer for it to work. Since that was the only new medication given, and since it's kinda in the same family as compazine, we were fairly confident that meclizine was the culprit. So, we told her nurse to skip the next dose, due at 6:00 AM, until we could discuss it with Dr. V. Well, at 6:00 AM the nurse came in, nudged Courtney awake just enough so she could take it. Courtney, having only been asleep for barely three hours, took it without really knowing what it was. And, sure enough within an hour, was feeling the effects again. Fortunately, Dr. V was at the hospital by then, and Courtney was able to quickly get the benedryl and dilodid via IV. That helped alleviate the side effects much faster than last night. So, no more meclizine.
Dr. V gave Courtney the go ahead to go home if she felt up to it. After sleeping for a few more hours, she was feeling much better and very much wanted to go home and see the kids again. So we packed up and headed home. Now, after a good evening of spending some time with the kids, eating a couple of small meals without getting nauseous, she’s sleeping soundly in her own bed once again. Quite the contrast to last night.
One more thing. Dr. V came in yesterday evening and told us the genetic tests came back. The report states that her cells were >95% donor (Tracy) cells!! >95% is the highest it can be reported. And Dr. V said basically it's 100%. She also said, "No recipient (Courtney) DNA detected." Which means no leukemia, and less likely that it'll reappear!! Very good and happy news. Courtney couldn't wait to call Tracy, but when we did get her on the phone, Court was too emotional to talk.
It's nice having good news once again. These happy milestones help soooo much, especially after a very long and crummy week.
This was a long week made longer with uncertainty. Each day brought with it more questions that seemed to take forever to get answered. When is the EGD? When do we get results? Can Courtney go home? What’s causing the nausea? Will there be more tests? Can Courtney go home tomorrow? Is that a new medication? What are we waiting for? When can we talk to a doctor? Why are we here?
Eventually most of the questions were answered, and Courtney’s condition slowly improved. Her blood counts took a turn for the better. The pain she had been feeling just below her ribs subsided. And, the nausea, that had been so persistently bothering her for the past week, finally relented today.
Here’s a quick recap of what transpired since Wednesday:
Thursday – Courtney finally underwent the EGD (For those of you wonder how to pronounce “Esophagogastroduodenoscopy”, here’s the pronunciation - ĕ-sof′ă-gō-gas′trō-dū′ō-den-os′kŏ-pē). Other than the fact that Courtney’s resistance to Versed caused her to fight the nurses as they forced the scope down her throat, the procedure went well. The doctor’s report actually includes the statement, “After adequate conscious sedation was achieved, the patient was intubated and the scope advanced under direct visualization to the third part of duodenum.” I’m not sure how they define “adequate.” I suppose they thought Courtney wouldn’t remember it. I think that’s usually the case with the “conscious sedation.” Anyway, they got the information they were looking for, and in the process took some nice pictures of Courtney’s innards. (Not many people can say they’ve seen their duodenum.) The verdict – Courtney has gastric paresis and acute gastritis. Given the recent chemotherapy and all the meds she’s been taken, neither of these was a surprise. In the process, they took a couple of biopsies. These results won’t be back for a few days.
After the procedure, Dr. V. started Courtney on the steroid Prednisone. This is used to counteract the GVHD, if any, and hopefully help her feel much better. Unfortunately, it has the unpleasant side effect of causing restlessness, and Courtney didn’t sleep well Thursday night.
Friday – First official day to be off the Foscarnet. Thank goodness. Hopefully she won’t have to revisit this drug. And hopefully we see her condition steadily improve. Basically Friday was spent weaning Courtney off of the IV meds they had been giving her since Tuesday. By “weaning” I mean switching to an oral form. They want to make sure she keeps them all down before sending her home. Right now, their biggest concern is that she consistently gets her antibiotics and Prograff (anti-GVHD drug). They really don’t want these to come back up or for her not to take them because she feels too nauseous. So, one more night in the hospital. And it was NOT a fun night.
The night was long because she had a bad reaction to another drug. Add Meclizine to the list. Dr. V. decided to try it to help her nausea since the scopalomine patch didn't seem to be helping that much. She took her first dose yesterday afternoon without problems. However, her second dose, given around midnight last night, made her react much the same way compazine did back in October. Skin crawling, muscle twitching, painful, irritating, etc. Unfortunately, the nurse had to page the doctor to get permission to give her benedryl. So, it took a little while to get and took a while longer for it to work. Since that was the only new medication given, and since it's kinda in the same family as compazine, we were fairly confident that meclizine was the culprit. So, we told her nurse to skip the next dose, due at 6:00 AM, until we could discuss it with Dr. V. Well, at 6:00 AM the nurse came in, nudged Courtney awake just enough so she could take it. Courtney, having only been asleep for barely three hours, took it without really knowing what it was. And, sure enough within an hour, was feeling the effects again. Fortunately, Dr. V was at the hospital by then, and Courtney was able to quickly get the benedryl and dilodid via IV. That helped alleviate the side effects much faster than last night. So, no more meclizine.
Dr. V gave Courtney the go ahead to go home if she felt up to it. After sleeping for a few more hours, she was feeling much better and very much wanted to go home and see the kids again. So we packed up and headed home. Now, after a good evening of spending some time with the kids, eating a couple of small meals without getting nauseous, she’s sleeping soundly in her own bed once again. Quite the contrast to last night.
One more thing. Dr. V came in yesterday evening and told us the genetic tests came back. The report states that her cells were >95% donor (Tracy) cells!! >95% is the highest it can be reported. And Dr. V said basically it's 100%. She also said, "No recipient (Courtney) DNA detected." Which means no leukemia, and less likely that it'll reappear!! Very good and happy news. Courtney couldn't wait to call Tracy, but when we did get her on the phone, Court was too emotional to talk.
It's nice having good news once again. These happy milestones help soooo much, especially after a very long and crummy week.
Wednesday, January 16, 2008
Day + 35 - Anything but routine
Yesterday’s short visit to the clinic has turned into a rather long trip from home. At least for Courtney anyway. After checking her lab results and seeing her platelets drop significantly, and seeing that her nausea was getting worse instead of better, they decided to admit her back into the hospital to run some tests. Dr. V said there was a chance that her symptoms and lab results could be due to Graft Versus Host Disease (GVHD). So, they wanted her to go to the hospital for a CT scan of her upper abdomen, where she’s been feeling pain the past couple of weeks, and an endoscopy to check her upper GI tract for lesions and to perform a biopsy to check for GVHD.
Her latests lab results:
This morning Dr. V came in and shed some light on her suspicions. Apparently, the GVHD manifests itself in many ways and could be causing her to feel the way she’s been feeling lately – more nauseous and fatigued than before. She also said the drop in lab counts and the increase in nausea could be due to the Foscarnet. I asked why, if she’s been on the Foscarnet since she left the hospital, would her counts suddenly drop. She said that it can have a cumulative affect and cause symptoms and side effects after a couple weeks of being on the medication.
Her plan was to have the Esophagogastroduodenoscopy (EGD) (officially the longest word I’ve ever written or used), today and start her on a relatively low dose of steroid (prednisone) pending the results of GVHD that could take 2-3 days. Unfortunately, the doctor overseeing the procedure didn’t want to do it because her hemoglobin was too low. He said she needed to get blood beforehand. Even more unfortunate was the fact that there was no way to get blood in time to still be able to get the EGD done today. The GI doctor who visited her this morning said if it was him he would have done it today regardless. This is really frustrating because Dr. V. said that she expects Courtney to be feeling better almost immediately after getting the steroid. But now we have to wait another day before starting it.
So, after a long morning of waiting to find out when the EGD would be (she couldn’t eat until after the procedure) we finally got word that it wouldn’t actually be done today and she could eat. The rest of the day went pretty smooth as she had a nice long visit with her friend, Melissa, and had a routine CT scan. No results yet.
She did finally get her two units of blood this evening, so all should be clear for the EGD tomorrow morning. We’re hoping that if everything is good tomorrow and she’s feeling up to it, that Courtney could go back home tomorrow. Otherwise, she may be here for one more night.
We’re just hoping and praying that they find some answers and get her turned around in the right direction towards recovery. She’s really tired of feeling nausea and pain, especially when they prevent her from getting out of bed. So, while the visit to the doctor didn’t quite go as expected, we know that she’s back in the hospital for a good reason – to help get her back to her routine as quickly as possible.
Oh, one more thing. Aidan made a dramatic recovery at about 9:00 yesterday morning. When we left for the clinic at 8:45 he still felt warm and looked a little lethargic. Half way to the clinic my mom called to tell us that he was downstairs (he hadn't come down once on Monday) begging for food and acting as if he'd never been sick at all. He's been himself ever since. Thanks again for the prayers.
Her latests lab results:
Date | Platelets | RBC | HGB | HCT | WBC |
1/10 | 65000 | 3.22 | 10.4 | 29.5 | 5.0 |
1/15 | 25000 | 2.58 | 8.2 | 23.8 | 5.5 |
1/16 | 23000 | 2.18 | 6.9 | 20.4 | 3.7 |
This morning Dr. V came in and shed some light on her suspicions. Apparently, the GVHD manifests itself in many ways and could be causing her to feel the way she’s been feeling lately – more nauseous and fatigued than before. She also said the drop in lab counts and the increase in nausea could be due to the Foscarnet. I asked why, if she’s been on the Foscarnet since she left the hospital, would her counts suddenly drop. She said that it can have a cumulative affect and cause symptoms and side effects after a couple weeks of being on the medication.
Her plan was to have the Esophagogastroduodenoscopy (EGD) (officially the longest word I’ve ever written or used), today and start her on a relatively low dose of steroid (prednisone) pending the results of GVHD that could take 2-3 days. Unfortunately, the doctor overseeing the procedure didn’t want to do it because her hemoglobin was too low. He said she needed to get blood beforehand. Even more unfortunate was the fact that there was no way to get blood in time to still be able to get the EGD done today. The GI doctor who visited her this morning said if it was him he would have done it today regardless. This is really frustrating because Dr. V. said that she expects Courtney to be feeling better almost immediately after getting the steroid. But now we have to wait another day before starting it.
So, after a long morning of waiting to find out when the EGD would be (she couldn’t eat until after the procedure) we finally got word that it wouldn’t actually be done today and she could eat. The rest of the day went pretty smooth as she had a nice long visit with her friend, Melissa, and had a routine CT scan. No results yet.
She did finally get her two units of blood this evening, so all should be clear for the EGD tomorrow morning. We’re hoping that if everything is good tomorrow and she’s feeling up to it, that Courtney could go back home tomorrow. Otherwise, she may be here for one more night.
We’re just hoping and praying that they find some answers and get her turned around in the right direction towards recovery. She’s really tired of feeling nausea and pain, especially when they prevent her from getting out of bed. So, while the visit to the doctor didn’t quite go as expected, we know that she’s back in the hospital for a good reason – to help get her back to her routine as quickly as possible.
Oh, one more thing. Aidan made a dramatic recovery at about 9:00 yesterday morning. When we left for the clinic at 8:45 he still felt warm and looked a little lethargic. Half way to the clinic my mom called to tell us that he was downstairs (he hadn't come down once on Monday) begging for food and acting as if he'd never been sick at all. He's been himself ever since. Thanks again for the prayers.
Monday, January 14, 2008
D + 33
I don't do this often enough, but thank you all for your comments and kind messages these past few months. Gosh, I can't believe it's been "months". That's so weird to say that. Anyway, your thoughts and well wishes really mean a lot to us. And even if you haven't left a message, thank you for taking the time to follow along. Your thoughts and prayers have given way to extraordinary actions that literally helped to carry us through this ordeal. Thank you!!
Today was mildly better than yesterday. Although it didn’t start out that way. She was debating going to the doctor today, mostly for peace of mind since she still has the same ailments she had on Thursday, but also wanted to get a better dose of anti-nausea medicine in the form of IV fenergan. Really not wanting to make the trek to the clinic, knowing that it would likely be a four hour ordeal including driving time, and knowing we had to return tomorrow morning no matter what, we asked if it would be possible for the home health nurse to come administer the fenergan. Laura, Dr. V’s PA, hesitated, thinking that it would take more than a day to get approval and get a nurse out to our home. We asked her to at least try, and within a couple of hours a man was delivering the supplies to our home and a nurse arrived shortly thereafter to give Courtney the medicine. It seemed to help quite a bit, though not completely. She was able to keep her medicine down and eat a little this evening. The home health people, Option Care, have been really good about coming when we’ve needed them. This is at least the third time that they’ve come through when the doctors and nurses doubted they would. We’ll have to keep it in mind the next time Courtney just needs a little extra meds to get her through the day more comfortably. It’s always nice to have options that don’t include fighting traffic or spending time in uncomfortable waiting rooms. Nothing beats the comfort of your own bed. And we especially like ours.
Tomorrow Courtney has an appointment at the BMT. It’s a routine visit, but we’re hoping to have some results from Thursday’s biopsy. Tune in tomorrow to find out.
Adding to today’s woes, Aidan was also sick today. Our normally active and precocious two year old was a miserable lump on a couch today. He seemingly had his own bouts of nausea periodically throughout the day, and spiked a pretty high fever this afternoon. He’s been sleeping soundly the past five hours, so hopefully he’ll wake up to a much better day.
If you should add Aidan to your prayers, please also add a little friend of ours, Alexa Aigner. She’s three years old and has been fighting her own cancer for over two years now. She’s had her own down days lately, and could use a little boost. Click on her name to read about her amazing and painful journey eloquently related by her mother.
Today was mildly better than yesterday. Although it didn’t start out that way. She was debating going to the doctor today, mostly for peace of mind since she still has the same ailments she had on Thursday, but also wanted to get a better dose of anti-nausea medicine in the form of IV fenergan. Really not wanting to make the trek to the clinic, knowing that it would likely be a four hour ordeal including driving time, and knowing we had to return tomorrow morning no matter what, we asked if it would be possible for the home health nurse to come administer the fenergan. Laura, Dr. V’s PA, hesitated, thinking that it would take more than a day to get approval and get a nurse out to our home. We asked her to at least try, and within a couple of hours a man was delivering the supplies to our home and a nurse arrived shortly thereafter to give Courtney the medicine. It seemed to help quite a bit, though not completely. She was able to keep her medicine down and eat a little this evening. The home health people, Option Care, have been really good about coming when we’ve needed them. This is at least the third time that they’ve come through when the doctors and nurses doubted they would. We’ll have to keep it in mind the next time Courtney just needs a little extra meds to get her through the day more comfortably. It’s always nice to have options that don’t include fighting traffic or spending time in uncomfortable waiting rooms. Nothing beats the comfort of your own bed. And we especially like ours.
Tomorrow Courtney has an appointment at the BMT. It’s a routine visit, but we’re hoping to have some results from Thursday’s biopsy. Tune in tomorrow to find out.
Adding to today’s woes, Aidan was also sick today. Our normally active and precocious two year old was a miserable lump on a couch today. He seemingly had his own bouts of nausea periodically throughout the day, and spiked a pretty high fever this afternoon. He’s been sleeping soundly the past five hours, so hopefully he’ll wake up to a much better day.
If you should add Aidan to your prayers, please also add a little friend of ours, Alexa Aigner. She’s three years old and has been fighting her own cancer for over two years now. She’s had her own down days lately, and could use a little boost. Click on her name to read about her amazing and painful journey eloquently related by her mother.
And all things, whatsoever ye shall ask in prayer, believing, ye shall receive.
- Matthew 21: 22
Sunday, January 13, 2008
D + 32 - Hoping for better days ahead
The past three days have not been “good” ones for Courtney. In fact, they’ve been downright crummy. I wouldn’t say she’s taken a step back in terms of her progress, but her overall energy level and physical comfort have definitely been on the down side.
Last Thursday’s biopsy went pretty well. The drugs (Versed) still didn’t knock out Courtney as much as she would have liked, but they gave her as much as they could. Apparently she’s really tolerant to the narcotic medications. The nurse who administered the drug said the amount he gave her typically knocks out large men.
Since the middle of last weeks she’s also been feeling some pain under her rib cage that makes it a little hard for her to take deep breaths. They took a chest x-ray just to be safe, and that came back clear. They’re not sure what’s causing the pain, but think it might be due to tension and stress. They advised her to take some pain meds to control it and to call if it got worse.
The main purpose of the biopsy was to check for cancer. Those results should be back within a couple of days. The genetic tests to determine whose cells are multiplying in her bone marrow, hers or Tracy’s, will take up to a week. Again, the goal is to have it all be Tracy’s cells, to mitigate the risk of Leukemic cells returning.
Since Thursday, the pain under her ribs hasn’t improved at all, and her nausea has kept her in bed for the better part of each day. We just realized that it’s been a couple of days since she stopped using a sopolamine patch (the kind you put behind your ear to keep from hurling when you go deep sea fishing). She had been using it since before she left the hospital. Chances are, it was still helping to keep the nausea at bay, so she reapplied one this evening. Hopefully that will help, and tomorrow will be a better day.
We still really believe that most of her discomfort and ill feelings are stemming from the Foscarnet. The last dose of that will be this coming Thursday. And we’re still hoping that that will mark a day when we will really start to see her feeling better both physically and emotionally. The physical discomforts, especially the nausea, really drain her energy and take a toll on her emotionally. Fortunately, her ailments have been discomforts and nothing more. Meaning that she hasn’t had any infections to deal with nor have we seen any outward signs of graft versus host disease (GVHD). Also, her blood counts, especially her WBC’s and neutrophils continue to look really good.
So, we’re happy to see her progress towards that 100th day since the transplant, And while we know that we will likely see her go up and down with regards to how she feels, we wish and pray that she puts these bad days become less frequent and less miserable and soon become a thing of the past.
Last Thursday’s biopsy went pretty well. The drugs (Versed) still didn’t knock out Courtney as much as she would have liked, but they gave her as much as they could. Apparently she’s really tolerant to the narcotic medications. The nurse who administered the drug said the amount he gave her typically knocks out large men.
Since the middle of last weeks she’s also been feeling some pain under her rib cage that makes it a little hard for her to take deep breaths. They took a chest x-ray just to be safe, and that came back clear. They’re not sure what’s causing the pain, but think it might be due to tension and stress. They advised her to take some pain meds to control it and to call if it got worse.
The main purpose of the biopsy was to check for cancer. Those results should be back within a couple of days. The genetic tests to determine whose cells are multiplying in her bone marrow, hers or Tracy’s, will take up to a week. Again, the goal is to have it all be Tracy’s cells, to mitigate the risk of Leukemic cells returning.
Since Thursday, the pain under her ribs hasn’t improved at all, and her nausea has kept her in bed for the better part of each day. We just realized that it’s been a couple of days since she stopped using a sopolamine patch (the kind you put behind your ear to keep from hurling when you go deep sea fishing). She had been using it since before she left the hospital. Chances are, it was still helping to keep the nausea at bay, so she reapplied one this evening. Hopefully that will help, and tomorrow will be a better day.
We still really believe that most of her discomfort and ill feelings are stemming from the Foscarnet. The last dose of that will be this coming Thursday. And we’re still hoping that that will mark a day when we will really start to see her feeling better both physically and emotionally. The physical discomforts, especially the nausea, really drain her energy and take a toll on her emotionally. Fortunately, her ailments have been discomforts and nothing more. Meaning that she hasn’t had any infections to deal with nor have we seen any outward signs of graft versus host disease (GVHD). Also, her blood counts, especially her WBC’s and neutrophils continue to look really good.
So, we’re happy to see her progress towards that 100th day since the transplant, And while we know that we will likely see her go up and down with regards to how she feels, we wish and pray that she puts these bad days become less frequent and less miserable and soon become a thing of the past.
Tuesday, January 8, 2008
D + 27 - Progress - slow but steady
Since leaving the hospital seven days ago, Courtney has steadily gotten better. The stomach pains and nausea have become less frequent and less intense. Her appetite has improved tremendously. And her energy level, while still below a 5 on a scale of 1 to 10, has definitely improved as well.
Last Friday we received great news at the BMT clinic. Courtney's CMV results had come back negative!! This meant that her six hour Foscarnet infusion could be reduced from a twice daily to once daily ordeal. That has been a life saver! It also meant that we could hope for the side effects of the Foscarnet to decrease, which I think we have. And, hopefully, after she's done with the Foscarnet in one more week, most of her problems with appetite and nausea will diminish altogether.
Her CBC's continue to be great! Last Friday, she did get a shot of Procrit because her hemoglobin was a little low, but she hasn't needed any infusions of blood products since leaving the hospital. The interesting thing about the Procrit is that they gave it to her within minutes, unlike the days it took for her to receive the first dose.
Courtney's next BMT visit will be this Thursday and includes a bone marrow biopsy. Not fun, but necessary to chart the progress of the transplant. They will be determining what percent of Courtney's bone marrow is now her sister Tracy's. From what we understand, the less of Courtney's marrow that remains, the better, because it was Courtney's bone marrow that was the source of the leukemia.
So, for now we're waiting. Waiting for the bone marrow biopsy and results. Waiting for the day that Courtney will no longer need to receive Foscarnet. Waiting for Courtney's overall well being to improve so she can start doing what she would like to be doing. Waiting for the D+100 milestone. Waiting for the Neostar to be removed from her chest. And waiting for Courtney's hair to start growing back so she can feel more like her old self again. While we wish these would all come sooner than later, we know that there isn't anything we can do to rush the process. So, we continue to take each day as they come, moving steadily but surely to that not so distant day when we'll be able to use the word, "cured."
Last Friday we received great news at the BMT clinic. Courtney's CMV results had come back negative!! This meant that her six hour Foscarnet infusion could be reduced from a twice daily to once daily ordeal. That has been a life saver! It also meant that we could hope for the side effects of the Foscarnet to decrease, which I think we have. And, hopefully, after she's done with the Foscarnet in one more week, most of her problems with appetite and nausea will diminish altogether.
Her CBC's continue to be great! Last Friday, she did get a shot of Procrit because her hemoglobin was a little low, but she hasn't needed any infusions of blood products since leaving the hospital. The interesting thing about the Procrit is that they gave it to her within minutes, unlike the days it took for her to receive the first dose.
Courtney's next BMT visit will be this Thursday and includes a bone marrow biopsy. Not fun, but necessary to chart the progress of the transplant. They will be determining what percent of Courtney's bone marrow is now her sister Tracy's. From what we understand, the less of Courtney's marrow that remains, the better, because it was Courtney's bone marrow that was the source of the leukemia.
So, for now we're waiting. Waiting for the bone marrow biopsy and results. Waiting for the day that Courtney will no longer need to receive Foscarnet. Waiting for Courtney's overall well being to improve so she can start doing what she would like to be doing. Waiting for the D+100 milestone. Waiting for the Neostar to be removed from her chest. And waiting for Courtney's hair to start growing back so she can feel more like her old self again. While we wish these would all come sooner than later, we know that there isn't anything we can do to rush the process. So, we continue to take each day as they come, moving steadily but surely to that not so distant day when we'll be able to use the word, "cured."
Wednesday, January 2, 2008
D+21 - Home sweet home...again.
After 29 days in the hospital and 21 days since the stem cell transplant, Courtney returned home!! It was a long day of receiving medications, instructions, paperwork, more medications and more instructions. We finally walked out the doors at 6:30 and returned home just in time to hang out with the kids before putting them in bed.
I have to admit that, after seeing Courtney spend so much of the past four days feeling nauteous, I was rather nervous about the bumpy car ride home. We sailed home without so much as a hiccup. The first thing she wanted to do when we walked in the house was go upstairs to see the kids. I thought 'no way.' Not that I doubt her abilities, but upon returning home after her first month in the hospital in October she couldn't even make it one step. Plus she was kine of wobbly from the medication. But she wanted to go to them. And go she did. Again without so much as a hiccup.
Shortly after putting the kids to bed, the home health nurse came by to bring us the Foscarnet and saline flushes for her twice daily infusions. She showed us how to do it, but there wasn't really much to show since it was pretty much the same routine with the Mycamine that she was on after consolidation chemotherapy. It's pretty simple, but it will take some calculating to deliver the solutions over the correct amount of time as they're gravity fed through a flow valve instead of through a pump like at the hospital. The first bag started shortly after 9:00 PM and was supposed to take 2 hours but took 2 and a half instead. The Foscarnet should be done just before 2:00 AM and then it's two more hours of saline. It's kind of like bringing home a newborn baby that has to be fed and changed every couple of hours. Hopefully will get this on a better schedule and, hopefully we'll get this down to just once a day instead of two.
I'm not sure if being home has anything to do with it, but Courtney's had her best night by far since the past week. Not only did she eat a chicken pot pie (more than she had at any one time for a few days), but she didn’t experience any of the overwhelming nausea that had plagued her invariably the past week. Now she's sleeping soundly in her own bed for the first time in almost a month. Nothing beats being in your own home, in your own bed. Home truly is SWEET!!
I have to admit that, after seeing Courtney spend so much of the past four days feeling nauteous, I was rather nervous about the bumpy car ride home. We sailed home without so much as a hiccup. The first thing she wanted to do when we walked in the house was go upstairs to see the kids. I thought 'no way.' Not that I doubt her abilities, but upon returning home after her first month in the hospital in October she couldn't even make it one step. Plus she was kine of wobbly from the medication. But she wanted to go to them. And go she did. Again without so much as a hiccup.
Shortly after putting the kids to bed, the home health nurse came by to bring us the Foscarnet and saline flushes for her twice daily infusions. She showed us how to do it, but there wasn't really much to show since it was pretty much the same routine with the Mycamine that she was on after consolidation chemotherapy. It's pretty simple, but it will take some calculating to deliver the solutions over the correct amount of time as they're gravity fed through a flow valve instead of through a pump like at the hospital. The first bag started shortly after 9:00 PM and was supposed to take 2 hours but took 2 and a half instead. The Foscarnet should be done just before 2:00 AM and then it's two more hours of saline. It's kind of like bringing home a newborn baby that has to be fed and changed every couple of hours. Hopefully will get this on a better schedule and, hopefully we'll get this down to just once a day instead of two.
I'm not sure if being home has anything to do with it, but Courtney's had her best night by far since the past week. Not only did she eat a chicken pot pie (more than she had at any one time for a few days), but she didn’t experience any of the overwhelming nausea that had plagued her invariably the past week. Now she's sleeping soundly in her own bed for the first time in almost a month. Nothing beats being in your own home, in your own bed. Home truly is SWEET!!
Tuesday, January 1, 2008
D + 20 - A New Year, but not quite home yet
Unfortunately our year isn't quite starting off how we had hoped. Courtney is still in the hospital battling low-grade fevers and pretty bad nausea that hits her about twice a day. However, we still are looking forward to having a great 2008.
During the early morning hours of Monday, just hours from being discharged, Courtney developed a fever of 100.7. A fever over 100.5 dictates that they draw blood to culture for infection, perform chest x-rays and start her on a couple of IV antibiotics. Then they like to keep her for another 48 hours to monitor and wait for the blood cultures to come back negative so they can discontinue the antibiotics. So, here we are, hoping that tomorrow Courtney will actually get to go home.
The CMV results also came back positive, albeit with only a few cells showing up. So, while it’s good that the counts dropped considerably, they don’t cut back on the Foscarnet until they see zero CMV. This is unfortunate since it seems likely that the Foscarnet is one of the drugs contributing to the nausea.
So, apart from the CMV, and the nausea, and the fevers, and the fact that she’s still in the hospital, the transplant has been a great success with the stem cells engrafting “wonderfully.” All of her blood counts continue to look really good, and she hasn’t had to receive any transfusions in almost a week. With her WBC’s within normal, her risk of infection is greatly reduced. However, they’re giving her drugs including Prograff that essentially turn off her immune system to prevent graft versus host disease. This makes her very susceptible to viruses.
One more day. One more night. And then Courtney’s home, back in her own bed. While this seems likely to be the case, I’m not making any promises.
During the early morning hours of Monday, just hours from being discharged, Courtney developed a fever of 100.7. A fever over 100.5 dictates that they draw blood to culture for infection, perform chest x-rays and start her on a couple of IV antibiotics. Then they like to keep her for another 48 hours to monitor and wait for the blood cultures to come back negative so they can discontinue the antibiotics. So, here we are, hoping that tomorrow Courtney will actually get to go home.
The CMV results also came back positive, albeit with only a few cells showing up. So, while it’s good that the counts dropped considerably, they don’t cut back on the Foscarnet until they see zero CMV. This is unfortunate since it seems likely that the Foscarnet is one of the drugs contributing to the nausea.
So, apart from the CMV, and the nausea, and the fevers, and the fact that she’s still in the hospital, the transplant has been a great success with the stem cells engrafting “wonderfully.” All of her blood counts continue to look really good, and she hasn’t had to receive any transfusions in almost a week. With her WBC’s within normal, her risk of infection is greatly reduced. However, they’re giving her drugs including Prograff that essentially turn off her immune system to prevent graft versus host disease. This makes her very susceptible to viruses.
One more day. One more night. And then Courtney’s home, back in her own bed. While this seems likely to be the case, I’m not making any promises.
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