This is the Consolidation Chemotherapy plan:
Days 1, 3 and 5 Courtney will receive two doses of Ara-c (Cytarabine) separated by 12 hours. Days 2 and 4 she will sit around and do nothing – as far as chemotherapy is concerned. She will probably do a lot of talking. She’s always been easy to talk to, but lately she’s been especially chatty. It’s been a lot of fun just listening to her. I wish I didn’t have to work, so I could spend more time with her. But I’m grateful for the nights that I’ve been able to stay with her and grateful to my mom for helping taking care of the kids and the house so I can have this time with Courtney.
So, today was chemotherapy free once the 2nd dose finished early this morning. She had a really good day, with the exception of some headaches. Hopefully that will be the worst of her stay here, and hopefully they won’t last much longer. Her next dose of chemotherapy begins tomorrow at noon. Each dose takes about 3 hours to administer. So far, not so bad.
Courtney
taken 8/4/07
Courtney and her kids
taken 8/4/07
Tuesday, October 30, 2007
Monday, October 29, 2007
Day 1 Consolidation
New round of chemotherapy and new hospital. After meeting with Dr. V last Thursday and deciding that we would proceed with a bone marrow transplant, we also decided Courtney would undergo the recommended round of consolidation chemotherapy under her care at UT Southwestern. We figured that since she would be going there for the transplant, we might as well go there now, allowing ourselves a chance to get to know the doctors and facilities, and allowing the doctors the opportunity to become familiar with Courtney. This way they will have a few weeks of first hand knowledge or her condition and reactions to the chemotherapy and other medications before the transplant procedure begins.
The hardest part about switching facilities is leaving behind the awesome nurses, techs and doctors that became like family during our stay at Harris Methodist. However, so far, everyone here at Zales has been great. And we have to admit the room is quite a bit nicer than her room at Harris Methodist. Note to Harris Methodist, the onocology floor is well past time for a serious makeover. A simple fresh coat of paint would go a long way. And get rid of the bump at the entrance to the bathroom; it’s a pain trying to get the IV pole over that all the time. A couple of little extra perks include a small fridge and dvd player. These small things just help ease the burden of being away from home, especially during an extended period of time.
So, the first day of consolidation came and went fairly quickly. We checked in shortly before 8:00 AM. At around 9:00 AM Dr. V came in with her PA (Laura), and the PharmD who will be verifying her chemo treatment. They said they would put a PICC line in, but this time they would use flouroscopy to see the line as it went in. At 9:30, Laura said Radiology was booked for the day and that she couldn't get her PICC until tomorrow, but would have Dr. V call down and use her influence. At 10:15, Laura came back to tell us she was on the schedule for Noon. Five minutes later, her nurse came in and said they were on their way to get her. By 11:30 she was back in her room after a flawless PICC line installation in her left arm. She flew through it without a single sedating drug and only local anesthesia! Much better than last time!!
Less than two hours later, Dr. Rohm came in to give her a spinal tap. This was a precautionary procedure to check her spinal fluid for leukemia. There are some forms of AML that appear in the spinal fluid and have to be treated with specific drugs. While they didn’t think her type would have this, they just wanted to make sure. This was obviously not a pleasant experience for Courtney. The main side effect has been head aches, but she’s doing great.
Laura the PA gave us some for information about the chemo and the duration of her stay. It will be similar to induction, with side affects occuring a week to 10 days later and her counts dropping to zero and going back up at a similar rate to what we saw last time. If she has a fever over 100.6 at any time, she will probably stay in the hospital until her neutrophils are back to 1000. If she looks good after the treatment, she will probably be sent home with instructions to return every other day. If during that time she gets a fever, she will probably be readmitted. Just like the induction treatment, she will need blood and platelet transfusions as her bone marrow goes off line. If she's not in the hospital, they will do the transfusions in the clinic as needed. They plan to leave her PICC line in when she goes home and set up a home health nurse to flush the line as needed. So, while were planning to be able to go home at the end of the week, we’re prepared to stay for the next 3 to 4 weeks if necessary.
The hardest part about switching facilities is leaving behind the awesome nurses, techs and doctors that became like family during our stay at Harris Methodist. However, so far, everyone here at Zales has been great. And we have to admit the room is quite a bit nicer than her room at Harris Methodist. Note to Harris Methodist, the onocology floor is well past time for a serious makeover. A simple fresh coat of paint would go a long way. And get rid of the bump at the entrance to the bathroom; it’s a pain trying to get the IV pole over that all the time. A couple of little extra perks include a small fridge and dvd player. These small things just help ease the burden of being away from home, especially during an extended period of time.
So, the first day of consolidation came and went fairly quickly. We checked in shortly before 8:00 AM. At around 9:00 AM Dr. V came in with her PA (Laura), and the PharmD who will be verifying her chemo treatment. They said they would put a PICC line in, but this time they would use flouroscopy to see the line as it went in. At 9:30, Laura said Radiology was booked for the day and that she couldn't get her PICC until tomorrow, but would have Dr. V call down and use her influence. At 10:15, Laura came back to tell us she was on the schedule for Noon. Five minutes later, her nurse came in and said they were on their way to get her. By 11:30 she was back in her room after a flawless PICC line installation in her left arm. She flew through it without a single sedating drug and only local anesthesia! Much better than last time!!
Less than two hours later, Dr. Rohm came in to give her a spinal tap. This was a precautionary procedure to check her spinal fluid for leukemia. There are some forms of AML that appear in the spinal fluid and have to be treated with specific drugs. While they didn’t think her type would have this, they just wanted to make sure. This was obviously not a pleasant experience for Courtney. The main side effect has been head aches, but she’s doing great.
Laura the PA gave us some for information about the chemo and the duration of her stay. It will be similar to induction, with side affects occuring a week to 10 days later and her counts dropping to zero and going back up at a similar rate to what we saw last time. If she has a fever over 100.6 at any time, she will probably stay in the hospital until her neutrophils are back to 1000. If she looks good after the treatment, she will probably be sent home with instructions to return every other day. If during that time she gets a fever, she will probably be readmitted. Just like the induction treatment, she will need blood and platelet transfusions as her bone marrow goes off line. If she's not in the hospital, they will do the transfusions in the clinic as needed. They plan to leave her PICC line in when she goes home and set up a home health nurse to flush the line as needed. So, while were planning to be able to go home at the end of the week, we’re prepared to stay for the next 3 to 4 weeks if necessary.
Saturday, October 27, 2007
I would have to say, and Courtney is sitting here agreeing with me, that today is the best day she’s had, physically and emotionally, since September 15th, when she first started feeling sick. She was up and about quite a bit, as witnessed by many of our friends we were able to see at our church’s Trunk or Treat.
The Trunk or Treat has become somewhat of a tradition for us. Each year around Halloween, families gather and park in the church parking lot and hand out candy to trick or treaters as they walk from car to car. We really enjoy it as it’s a safe and easy way for kids to trick or treat. You don’t have to worry about crossing streets, about strangers, or about dark houses. And everybody is home. And with cars only separated by a foot or two, the kids can hit a lot more cars in an hour than they ever could houses. This year the Trunk or Treat was especially great, since it allowed Courtney the opportunity to see the kids in their costumes and be with them trick or treating before she has to go back to hospital where she will be when Halloween actually comes around.
So, here’s the revised plan:
• Monday, October 29th, Courtney will be admitted to the hospital for five days of consolidation chemotherapy. Her doctor expects her to be released from the hospital on Saturday if all goes well.
• Next Friday, November 2nd, we should find out if any of Courtney’s other siblings are matches for a stem cell transplant.
• About four weeks after her consolidation treatment, Courtney will go to the Bone Marrow Transplant clinic for a couple days of physical examination, where they will make sure she is physically and emotionally fit for the transplant.
• If she passes her physical, she gets to play ball, and about a week later she’ll be admitted to the hospital for hopefully the last time.
• Eight days after admission and after a few days of more chemotherapy, Courtney will actually receive the stem cell transplant, which is more or less a blood transfusion.
• After the actual transplant, she will experience a couple of weeks similar to what she experienced after receiving her first round of chemotherapy (the induction chemotherapy.)
• Two to three weeks after the transplant, when her bone marrow is back to working properly and her WBC’s are back to normal, Courtney will be discharged from the hospital for the last time!
So, if you look at your calendars and follow the above timing, she will likely be in the hospital through Christmas, but coming out sometime before or after New Year’s. Courtney keeps saying she’s looking forward to starting 2008 cancer free! What a great blessing that would be!
We know for a fact that prayers work and have been answered throughout this entire process. We are again so thankful for the countless blessings that have come to us by way of so many wonderful friends and family members. We truly couldn't have made it this far so easily without all of the prayers and support. Thank you again!
Here are some pics from tonight!
The Trunk or Treat has become somewhat of a tradition for us. Each year around Halloween, families gather and park in the church parking lot and hand out candy to trick or treaters as they walk from car to car. We really enjoy it as it’s a safe and easy way for kids to trick or treat. You don’t have to worry about crossing streets, about strangers, or about dark houses. And everybody is home. And with cars only separated by a foot or two, the kids can hit a lot more cars in an hour than they ever could houses. This year the Trunk or Treat was especially great, since it allowed Courtney the opportunity to see the kids in their costumes and be with them trick or treating before she has to go back to hospital where she will be when Halloween actually comes around.
So, here’s the revised plan:
• Monday, October 29th, Courtney will be admitted to the hospital for five days of consolidation chemotherapy. Her doctor expects her to be released from the hospital on Saturday if all goes well.
• Next Friday, November 2nd, we should find out if any of Courtney’s other siblings are matches for a stem cell transplant.
• About four weeks after her consolidation treatment, Courtney will go to the Bone Marrow Transplant clinic for a couple days of physical examination, where they will make sure she is physically and emotionally fit for the transplant.
• If she passes her physical, she gets to play ball, and about a week later she’ll be admitted to the hospital for hopefully the last time.
• Eight days after admission and after a few days of more chemotherapy, Courtney will actually receive the stem cell transplant, which is more or less a blood transfusion.
• After the actual transplant, she will experience a couple of weeks similar to what she experienced after receiving her first round of chemotherapy (the induction chemotherapy.)
• Two to three weeks after the transplant, when her bone marrow is back to working properly and her WBC’s are back to normal, Courtney will be discharged from the hospital for the last time!
So, if you look at your calendars and follow the above timing, she will likely be in the hospital through Christmas, but coming out sometime before or after New Year’s. Courtney keeps saying she’s looking forward to starting 2008 cancer free! What a great blessing that would be!
We know for a fact that prayers work and have been answered throughout this entire process. We are again so thankful for the countless blessings that have come to us by way of so many wonderful friends and family members. We truly couldn't have made it this far so easily without all of the prayers and support. Thank you again!
Here are some pics from tonight!
Thursday, October 25, 2007
Day 34 - The BMT Visit
Courtney had a lot of ups and downs today – literally and figuratively. She started off with her best night’s rest in a long time (thank you, Barb), but woke up in the wee hours of the morning with more stomach aches. The pain and discomfort continued throughout the day until we left for the appointment at the Bone Marrow Transplant Center.
The BMT Center was very nice. Everyone, from the receptionist, to the Physicians Assistant, to the Doctor were very accommodating and extremely likeable. We received more information regarding Courtney’s condition and treatment in less than an hour than we have since she was first diagnosed. They laid out the plan for more chemotherapy and ultimately the bone marrow transplant. It was a lot of good information to digest, bringing with it some big decisions to make.
By the end of the visit, Courtney was feeling much better. We had a nice dinner, courtesy of Courtney’s mom, who actually flew in for the day to attend the appointment and help us to gather information and ask the right questions. Courtney was feeling so well when we got home that she was actually able to walk up and down the stairs in our house for the first time since returning home. This was great as she was able to tuck the kids into bed for the first time in over a month. It’s funny how the seemingly small things become cherished moments when you’re not able to do them for such a long time.
The BMT Center was very nice. Everyone, from the receptionist, to the Physicians Assistant, to the Doctor were very accommodating and extremely likeable. We received more information regarding Courtney’s condition and treatment in less than an hour than we have since she was first diagnosed. They laid out the plan for more chemotherapy and ultimately the bone marrow transplant. It was a lot of good information to digest, bringing with it some big decisions to make.
By the end of the visit, Courtney was feeling much better. We had a nice dinner, courtesy of Courtney’s mom, who actually flew in for the day to attend the appointment and help us to gather information and ask the right questions. Courtney was feeling so well when we got home that she was actually able to walk up and down the stairs in our house for the first time since returning home. This was great as she was able to tuck the kids into bed for the first time in over a month. It’s funny how the seemingly small things become cherished moments when you’re not able to do them for such a long time.
Wednesday, October 24, 2007
Day 33 - A Donor!
This morning Courtney received a call from her sister, Tracy, who is now back in Italy. Tracy found out today that she is a match for a bone marrow transplant for Courtney! So far she is the only one to be tested. Courtney has two other sisters and a brother who are all planning to be tested as well. It's nice to be 1 for 1.
We’re not sure how having a donor will affect the chemotherapy treatment schedule, or how soon the transplant would take place. We have an appointment with the UT Southwestern Transplant Clinic tomorrow afternoon. Hopefully we’ll find out exactly what to expect in the coming weeks.
Courtney continues to see physical improvements daily. Today was by far her best feeling to date. She was up and about quite a bit and even got out of the house for awhile. Her biggest issues continue to be abdominal pain, tiredness and muscle fatigue. These are more than likely due to a combination of the lingering effects of the chemotherapy, the lengthy hospital stay, and the medications she’s taking. All of these will hopefully subside before her next round of treatment. In the meantime, she continues to eat fairly well and does what exercises she can. She was shown some great little exercises by the physical therapist at the hospital.
Her spirits are lifted daily as she’s able to visit with more friends and reconnect with her “normal” life that was suddenly and drastically put on hold more than five weeks ago. She’s also lifted up by the many small and not so small acts of kindness by friends and family near and far. This evening we received a surprise visit from the Young Women of our church. Unfortunately their visit had to remain on the doorstep and free of much wanted hugs as Courtney still has to be vigilant is staying away from germs. The wonderful young ladies brought over cute blankets they had tied and stuffed animals for each of our four children!! Thank you!!!
Also this evening, Courtney received a much needed professional massage that she described as “awesome” from a friend from church. I honestly haven’t seen her smiling so big and looking so content in a long time. After so many nights in a hospital bed, her back has been quite achy. It’s amazing what good rub down can accomplish. I think she’s really going to sleep much better tonight.
So, despite the horrendousness of cancer and all the pains that come with it, we continue to count our blessings and are constantly amazed by the plentitude that continue to come our way. It is our firm belief that God’s love is expressed through the kind actions and generosity of those around us. We are so very thankful to all of those who have given their time, talents, energy, money, and prayers (so very many of which have been answered), helping us to feel an overwhelming amount of God’s love at a time when we most need it. We hope and pray that your lives are blessed tenfold in return.
We’re not sure how having a donor will affect the chemotherapy treatment schedule, or how soon the transplant would take place. We have an appointment with the UT Southwestern Transplant Clinic tomorrow afternoon. Hopefully we’ll find out exactly what to expect in the coming weeks.
Courtney continues to see physical improvements daily. Today was by far her best feeling to date. She was up and about quite a bit and even got out of the house for awhile. Her biggest issues continue to be abdominal pain, tiredness and muscle fatigue. These are more than likely due to a combination of the lingering effects of the chemotherapy, the lengthy hospital stay, and the medications she’s taking. All of these will hopefully subside before her next round of treatment. In the meantime, she continues to eat fairly well and does what exercises she can. She was shown some great little exercises by the physical therapist at the hospital.
Her spirits are lifted daily as she’s able to visit with more friends and reconnect with her “normal” life that was suddenly and drastically put on hold more than five weeks ago. She’s also lifted up by the many small and not so small acts of kindness by friends and family near and far. This evening we received a surprise visit from the Young Women of our church. Unfortunately their visit had to remain on the doorstep and free of much wanted hugs as Courtney still has to be vigilant is staying away from germs. The wonderful young ladies brought over cute blankets they had tied and stuffed animals for each of our four children!! Thank you!!!
Also this evening, Courtney received a much needed professional massage that she described as “awesome” from a friend from church. I honestly haven’t seen her smiling so big and looking so content in a long time. After so many nights in a hospital bed, her back has been quite achy. It’s amazing what good rub down can accomplish. I think she’s really going to sleep much better tonight.
So, despite the horrendousness of cancer and all the pains that come with it, we continue to count our blessings and are constantly amazed by the plentitude that continue to come our way. It is our firm belief that God’s love is expressed through the kind actions and generosity of those around us. We are so very thankful to all of those who have given their time, talents, energy, money, and prayers (so very many of which have been answered), helping us to feel an overwhelming amount of God’s love at a time when we most need it. We hope and pray that your lives are blessed tenfold in return.
Monday, October 22, 2007
Day 31 - Home At Last!!
Courtney is finally home and hospital free – at least for the next seven nights! It was such a great sight to see her and the kids together again after more than two weeks. The look on their faces when they saw her walk in the door was priceless. They all had a nervous look to their exuberance, not sure what to make of a bald mommy. They all quickly overcame the uncertainty of Courtney’s new look, and quickly started showing her things they had made and telling her all they had done while she was away.
As far as Courtney’s physical condition is concerned, the past two days have been superbly uneventful. She did have a couple of fevers Saturday night and into Sunday (none last night or today!), that made us question whether or not she would get to come home today, but, other than that there is really nothing worth noting. Her blood counts are almost completely within normal. Her WBC’s and neutrophils are within normal, as are her platelets and hemoglobin. After more than 30 days of abnormal results, it’s really nice to finally see some normalcy.
Last night was difficult as Courtney had to say goodbye to her sister Tracy as she left early this morning to return to Italy, where her husband Shawn is stationed with the Army. She really enjoyed having her around this past week. It had been over two years since they last saw each other, and they had a good time reconnecting. It’s just too bad that it couldn’t be under circumstances that were more fun. It’s hard saying goodbye to the ones you love, especially when you’re not sure how long it will be until you’re able to see them again.
Tonight will be the first night in over a month that Courtney won’t be woken up at 4:30 AM to have blood taken, nor at 7:00 AM to have her vitals checked. We’re hoping she gets a really good night of rest in her own bed without the disturbances. She’s had a long day and really needs it.
Her main battle this week will be trying to regain some of her strength that she lost while confined to her hospital bed for so long. It’s amazing how quickly muscles atrophy when not used. She was unable to go up our stairs or pick up Aidan today. I think she’d really like to be feeling better physically before starting the next round of chemotherapy. This week she’ll have to balance getting plenty of rest while doing what she can to use her muscles and build them back. I have a feeling this next week will fly by. For once I wish we could slow down the clock – at least for the next seven days.
As far as Courtney’s physical condition is concerned, the past two days have been superbly uneventful. She did have a couple of fevers Saturday night and into Sunday (none last night or today!), that made us question whether or not she would get to come home today, but, other than that there is really nothing worth noting. Her blood counts are almost completely within normal. Her WBC’s and neutrophils are within normal, as are her platelets and hemoglobin. After more than 30 days of abnormal results, it’s really nice to finally see some normalcy.
Last night was difficult as Courtney had to say goodbye to her sister Tracy as she left early this morning to return to Italy, where her husband Shawn is stationed with the Army. She really enjoyed having her around this past week. It had been over two years since they last saw each other, and they had a good time reconnecting. It’s just too bad that it couldn’t be under circumstances that were more fun. It’s hard saying goodbye to the ones you love, especially when you’re not sure how long it will be until you’re able to see them again.
Tonight will be the first night in over a month that Courtney won’t be woken up at 4:30 AM to have blood taken, nor at 7:00 AM to have her vitals checked. We’re hoping she gets a really good night of rest in her own bed without the disturbances. She’s had a long day and really needs it.
Her main battle this week will be trying to regain some of her strength that she lost while confined to her hospital bed for so long. It’s amazing how quickly muscles atrophy when not used. She was unable to go up our stairs or pick up Aidan today. I think she’d really like to be feeling better physically before starting the next round of chemotherapy. This week she’ll have to balance getting plenty of rest while doing what she can to use her muscles and build them back. I have a feeling this next week will fly by. For once I wish we could slow down the clock – at least for the next seven days.
Saturday, October 20, 2007
Day 29 - I Will Be Here
Courtney's first full day in the hospital, free of tubes and IV's, has left me little to say or update regarding her treatment. She did start a new medication that had interesting side effects that affected her vision, thoughts and speech. She's supposed to take it for the next 21 days, but is going to ask for something else if the side effects persist.
Her WBC's are still increasing steadily upward, approaching the normal range. Her neutrophils were actually within the normal range as were her plateletts!! Also, her day was fever free. If she keeps this up, 48 hours from now she will be sleeping soundly in her own bed.
Today was, for the most part, a great day of visiting with family and friends. My sister Molly arrived this morning for the weekend. Also, Courtney's brother Chris came back to town, this time with his wife, Leticia, and their two precious children, Lindsey and Christiana. Courtney spent most of the day with her parents and had a really nice visit with Leticia.
I took the kids, my mom and sister to the second garage sale held for Courtney. It's still so overwhelming to see all the people giving so much of their time to help us! Thank you, thank you, thank you for all your support!!! Later, I was able to take the three girls one at a time to our local fire station for flu shots. It's so much easier when they can't see the others getting theirs. The flu shots are one more thing that will help Courtney and ease some of her fears of coming home. She gets hers tomorrow.
We really had a lot of fun today. It's always so bittersweet to have a good day without Courtney around, knowing that she's stuck in the hospital and knowing that she would give anything to be with us. I can wait for the day that we can go back to having our normal family fun.
On the way home from visiting her in the hospital tonight, I listend to a song for the first time in a long time. It's on a CD that I made for Courtney shortly after we were married. The lyrics were significant then, but their significance today brought tears to my eyes. I couldn't resist putting it here, to share with her and with all of you who have been here for us.
Steven Curtis Chapman - I Will Be Here
Her WBC's are still increasing steadily upward, approaching the normal range. Her neutrophils were actually within the normal range as were her plateletts!! Also, her day was fever free. If she keeps this up, 48 hours from now she will be sleeping soundly in her own bed.
Today was, for the most part, a great day of visiting with family and friends. My sister Molly arrived this morning for the weekend. Also, Courtney's brother Chris came back to town, this time with his wife, Leticia, and their two precious children, Lindsey and Christiana. Courtney spent most of the day with her parents and had a really nice visit with Leticia.
I took the kids, my mom and sister to the second garage sale held for Courtney. It's still so overwhelming to see all the people giving so much of their time to help us! Thank you, thank you, thank you for all your support!!! Later, I was able to take the three girls one at a time to our local fire station for flu shots. It's so much easier when they can't see the others getting theirs. The flu shots are one more thing that will help Courtney and ease some of her fears of coming home. She gets hers tomorrow.
We really had a lot of fun today. It's always so bittersweet to have a good day without Courtney around, knowing that she's stuck in the hospital and knowing that she would give anything to be with us. I can wait for the day that we can go back to having our normal family fun.
On the way home from visiting her in the hospital tonight, I listend to a song for the first time in a long time. It's on a CD that I made for Courtney shortly after we were married. The lyrics were significant then, but their significance today brought tears to my eyes. I couldn't resist putting it here, to share with her and with all of you who have been here for us.
Steven Curtis Chapman - I Will Be Here
Friday, October 19, 2007
Day 28 - Remission!!
This morning Courtney had bone marrow biopsy #2. The first one was done almost four weeks ago to help us determine what type of AML Courtney has. Today's was done to tell us whether or not the chemotherapy put Courtney into remission. We found out earlier this evening that it did!!
The pathologist had actually told us that we probably wouldn’t have results until tomorrow, but Dr. Jordan’s partner came in with the results this evening. The timing of this news came as a big surprise – one we welcomed with open arms.
The biopsy, while obviously painful for Courtney, went quite smoothly. She was able to get some rest afterward. Later in the afternoon, Courtney had her Hickman catheter removed. The doctor was going to numb the area a little before pulling it out, but after seeing that it might come out easily, he just gave it a good tug and out it came. So, for the first time in four weeks, Courtney is sleeping tube free. She has absolutely nothing attached to or hanging from her body. After weeks of trying to sleep through nights with incessantly beeping IV pumps, I’m sure Courtney is relishing the thought of a restful night free of disturbance. I’m sure her sister, Tracy, is too.
Speaking of Tracy, she went to the bone marrow transplant clinic in Dallas to have blood drawn to check to see if she is a match for Courtney. Since Courtney hasn’t been to the clinic, Tracy took four vials of Courtney’s blood with her. She was told the process of determining whether or not her marrow is a match to Courtney’s could take a full week. It’s nice to finally of the process of finding a donor moving forward. Thank you Tracy!!
Truly amazing. After one simple phone call last night, 10 women from our church showed up at 11:00 this morning to help clean and sanitize our house. They did a tremendous job in just a little over an hour. The house acutally smelled like a swimming pool (I love that smell) when I got home! Once again we are grateful beyond description for the love and support we’ve received these past four weeks.
Four weeks!! Exactly four weeks ago today, Courtney was diagnosed with Leukemia. Today she found out she is in remission. We can’t believe it’s actually been that long. While each day has been rather lengthy, the weeks have seemingly flown by. Though we are along way from being done with this, we feel like we’ve taken a giant step forward in the right direction! Thank you for answered prayers!!
After some discussion with her Doctor, it was decided that Courtney would wait until Monday to go home. Courtney is actually relieved to have a couple of extra days to recover before going home. These two days will give her a chance to gain more strength physically and emotionally before being removed from awesome care of the doctors and nurses. After four weeks, we can wait a couple of extra days. Especially days without beeping IV machines.
The pathologist had actually told us that we probably wouldn’t have results until tomorrow, but Dr. Jordan’s partner came in with the results this evening. The timing of this news came as a big surprise – one we welcomed with open arms.
The biopsy, while obviously painful for Courtney, went quite smoothly. She was able to get some rest afterward. Later in the afternoon, Courtney had her Hickman catheter removed. The doctor was going to numb the area a little before pulling it out, but after seeing that it might come out easily, he just gave it a good tug and out it came. So, for the first time in four weeks, Courtney is sleeping tube free. She has absolutely nothing attached to or hanging from her body. After weeks of trying to sleep through nights with incessantly beeping IV pumps, I’m sure Courtney is relishing the thought of a restful night free of disturbance. I’m sure her sister, Tracy, is too.
Speaking of Tracy, she went to the bone marrow transplant clinic in Dallas to have blood drawn to check to see if she is a match for Courtney. Since Courtney hasn’t been to the clinic, Tracy took four vials of Courtney’s blood with her. She was told the process of determining whether or not her marrow is a match to Courtney’s could take a full week. It’s nice to finally of the process of finding a donor moving forward. Thank you Tracy!!
Truly amazing. After one simple phone call last night, 10 women from our church showed up at 11:00 this morning to help clean and sanitize our house. They did a tremendous job in just a little over an hour. The house acutally smelled like a swimming pool (I love that smell) when I got home! Once again we are grateful beyond description for the love and support we’ve received these past four weeks.
Four weeks!! Exactly four weeks ago today, Courtney was diagnosed with Leukemia. Today she found out she is in remission. We can’t believe it’s actually been that long. While each day has been rather lengthy, the weeks have seemingly flown by. Though we are along way from being done with this, we feel like we’ve taken a giant step forward in the right direction! Thank you for answered prayers!!
After some discussion with her Doctor, it was decided that Courtney would wait until Monday to go home. Courtney is actually relieved to have a couple of extra days to recover before going home. These two days will give her a chance to gain more strength physically and emotionally before being removed from awesome care of the doctors and nurses. After four weeks, we can wait a couple of extra days. Especially days without beeping IV machines.
Thursday, October 18, 2007
Day 27 - Homeward Bound
Courtney’s oncologist, Dr. Jordan, visited her this afternoon, bringing with him very good news. Her WBC’s and neutrophils are high enough for her to go home! However, her infectious disease doctor said he wants to see her go 24 hours without a fever before going home. She had a slight fever early this afternoon. So, if she is fever free after today and if she’s feeling up to it, she could feasibly be coming home Saturday!
This news came somewhat as a surprise. While we knew all along that 1000 neutrophils was the benchmark for going home, and while we knew she was rapidly approaching that mark, we were apprehensive to even consider going home so soon thinking there had to be more criteria. Especially considering how bad Courtney had felt so recently. So, with the tremendously great news comes anxious anticipation.
After being so sick for so many days, Courtney is understandably nervous about being away from the hospital and away from most of the people who have done such an amazing job at taking care of her. The wonderful doctors and nurses have essentially been Courtney’s lifeline for the past four weeks, keeping her infections at bay and her pains at a minimum. She fears not having them (and their drugs) around when she might need them. So, while she undoubtedly is looking forward to being in her own home and in her own bed and with her children again, she’s somewhat worried about becoming sick again in the process. We are going to do everything we can between now and then to alleviate her fears by sanitizing the house and making it in tip-top condition for her homecoming.
So here’s the plan:
Tomorrow morning she will have her second bone marrow biopsy. This is a big one, as it will tell us whether or not she’s in remission. We’re hoping the results will be ready tomorrow afternoon. Also, tomorrow, Courtney will have the Hickman catheter removed. Her platelets were above 70,000 today, so the doctors are finally confident about removing it without excessive bleeding.
Thursday, October 25th, Courtney has an appointment at the Bone Marrow Transplant Clinic at UT Southwestern in Dallas. They will do an assessment to determine if she is a viable candidate for a transplant. Basically they will perform a thorough evaluation to make sure she can withstand the physical and mental stresses associated with a transplant. It’s a fairly risky procedure that they don’t take lightly.
Monday, October 29th, she will likely be scheduled to return to the hospital and it’s friendly staff for her next round of chemotherapy, called Consolidation. Dr. Jordan said that he’s planning on three rounds. Each round consists of six days of chemotherapy followed by a few days of recovery. He said that the recovery period during the consolidation is different than the induction recovery that she just endured. He didn’t specify the number of days she’d be in the hospital for each round, but it’ll be at least 7 days and likely 10 or more. After each round Courtney would go home for a week.
An important aspect of all this is that neither the consolidation chemotherapy nor the bone marrow transplant will occur if she isn’t in remission. If the bone marrow biopsy shows that she still has leukemic cells, she will more than likely start over with another round of induction (a repeat of the past three weeks). That would be a crummy setback to say the least. So, now you all know what to pray for. Your prayers and support have helped to get us this far! We are along way from the end, so please don't stop now!!
This news came somewhat as a surprise. While we knew all along that 1000 neutrophils was the benchmark for going home, and while we knew she was rapidly approaching that mark, we were apprehensive to even consider going home so soon thinking there had to be more criteria. Especially considering how bad Courtney had felt so recently. So, with the tremendously great news comes anxious anticipation.
After being so sick for so many days, Courtney is understandably nervous about being away from the hospital and away from most of the people who have done such an amazing job at taking care of her. The wonderful doctors and nurses have essentially been Courtney’s lifeline for the past four weeks, keeping her infections at bay and her pains at a minimum. She fears not having them (and their drugs) around when she might need them. So, while she undoubtedly is looking forward to being in her own home and in her own bed and with her children again, she’s somewhat worried about becoming sick again in the process. We are going to do everything we can between now and then to alleviate her fears by sanitizing the house and making it in tip-top condition for her homecoming.
So here’s the plan:
Tomorrow morning she will have her second bone marrow biopsy. This is a big one, as it will tell us whether or not she’s in remission. We’re hoping the results will be ready tomorrow afternoon. Also, tomorrow, Courtney will have the Hickman catheter removed. Her platelets were above 70,000 today, so the doctors are finally confident about removing it without excessive bleeding.
Thursday, October 25th, Courtney has an appointment at the Bone Marrow Transplant Clinic at UT Southwestern in Dallas. They will do an assessment to determine if she is a viable candidate for a transplant. Basically they will perform a thorough evaluation to make sure she can withstand the physical and mental stresses associated with a transplant. It’s a fairly risky procedure that they don’t take lightly.
Monday, October 29th, she will likely be scheduled to return to the hospital and it’s friendly staff for her next round of chemotherapy, called Consolidation. Dr. Jordan said that he’s planning on three rounds. Each round consists of six days of chemotherapy followed by a few days of recovery. He said that the recovery period during the consolidation is different than the induction recovery that she just endured. He didn’t specify the number of days she’d be in the hospital for each round, but it’ll be at least 7 days and likely 10 or more. After each round Courtney would go home for a week.
An important aspect of all this is that neither the consolidation chemotherapy nor the bone marrow transplant will occur if she isn’t in remission. If the bone marrow biopsy shows that she still has leukemic cells, she will more than likely start over with another round of induction (a repeat of the past three weeks). That would be a crummy setback to say the least. So, now you all know what to pray for. Your prayers and support have helped to get us this far! We are along way from the end, so please don't stop now!!
Wednesday, October 17, 2007
Day 26 - The Best Medicine
Courtney’s day started off as planned with an ultrasound of her gall bladder and liver. Her sister, Tracy, related the following:
The morning was filled with a good dose of laughter. I can’t tell you how nice it was to see this. Her laugh was the best thing I’ve seen in a long time. It might have been somewhat drug induced, but it was genuine. And just 48 hours earlier, no amount of drugs were going to help produce a laugh from her. The laughter alone made today a better day.
Her CBC results also made today a better day –
WBC = 800 (Still rising)
%Neutrophils = 57%
Absolute Neutrophils = 500 (half way there!)
%Blasts = 1% (While we’d rather see zero, no need for alarm yet.)
I got to her room today just as the gastroenterologist was paying her a visit. He said that her bilirubin levels were back to normal and that the ultrasound showed nothing to be concerned of. In fact, he gave her a clean bill of health with regards to her liver (no hepatitis) and gall bladder (no blockage or gall stones).
Shortly after the GI doctor’s visit, her primary care doctor, Dr. Bolagi, showed up. He’s visited her on all but two days since she’s been in the hospital. He was glad to see her sitting up in a chair, eating food and in relatively good spirits. He said he was glad to see better blood results. He also said the edema (swelling throughout her body) should improve as her eating improves and as they cut back on her fluids. He said that while he could give her albumin, he’d prefer to let the body beat that on its own, rather than introducing more substances into her body.
Around noon, Tracy cut Courtney’s hair even shorter. She gave her a really short bob that was quite cute. I had actually brought the clippers with me, but Courtney decided to try to save the little hair she had while she had it.
It wouldn’t last, however. And by the end of the day, it had become evident that the best thing to do would be to shave it all off. Easier said than done. I can’t imagine that Courtney ever planned on showing me the true shape of her head. I doubt that many women would want their husbands to see them that way, or even see themselves that way. It’s hard to say good-bye to something that literally is part of who you are and who you always have been. It might be just hair and it will grow back, but those facts only slightly mitigate the difficulty of removing a woman’s hair. Lots of tears were shed. I think the hardest part for Courtney wasn’t so much the actual shaving as it was having to face the fact that she’s having to shave because she has cancer.
Yet, despite the swelling, despite not having seen her children for 11 days, despite having to spend her 27th straight night in the hospital, despite her swollen feet and ankles that reminded her of Princess Fiona’s from Shrek, and despite the loss of her hair that she spent the past year growing out, she managed to have a few little laughs and some genuine smiles at the end of a very emotional day.
I must say that Courtney has a very cute melon. I had to remind her that it wasn’t her hair that first caught my attention 10 years ago. It was her beautiful eyes and gorgeous smile that had me smitten from day one. And cancer hasn’t touched those one bit.
“I have to tell a funny story from this morning...she was transported downstairs to the ultrasound room, had her scan and she and I were waiting for them to bring her back upstairs. A girl and a guy came in and said hello and that they were ready to take us back upstairs to her room. Courtney looked at both of them and said "I will give you $20.00 to take me home" and they laughed. She looked at me and then said "I will give you a $100.00 to take me home" and they laughed again and said they just couldn't but it was tempting! So she looked at me again so I said "I'll throw in 100 bucks to the pot to take her home!" and Courtney said "she can throw in more than that!!" Well, none of it worked and we are back in her room but we smiled and giggled. Oh, one more thing, once she woke from a catnap and realized she was in her room she looked at me and said "Why didn't you pay them more?!””
The morning was filled with a good dose of laughter. I can’t tell you how nice it was to see this. Her laugh was the best thing I’ve seen in a long time. It might have been somewhat drug induced, but it was genuine. And just 48 hours earlier, no amount of drugs were going to help produce a laugh from her. The laughter alone made today a better day.
Her CBC results also made today a better day –
WBC = 800 (Still rising)
%Neutrophils = 57%
Absolute Neutrophils = 500 (half way there!)
%Blasts = 1% (While we’d rather see zero, no need for alarm yet.)
I got to her room today just as the gastroenterologist was paying her a visit. He said that her bilirubin levels were back to normal and that the ultrasound showed nothing to be concerned of. In fact, he gave her a clean bill of health with regards to her liver (no hepatitis) and gall bladder (no blockage or gall stones).
Shortly after the GI doctor’s visit, her primary care doctor, Dr. Bolagi, showed up. He’s visited her on all but two days since she’s been in the hospital. He was glad to see her sitting up in a chair, eating food and in relatively good spirits. He said he was glad to see better blood results. He also said the edema (swelling throughout her body) should improve as her eating improves and as they cut back on her fluids. He said that while he could give her albumin, he’d prefer to let the body beat that on its own, rather than introducing more substances into her body.
Around noon, Tracy cut Courtney’s hair even shorter. She gave her a really short bob that was quite cute. I had actually brought the clippers with me, but Courtney decided to try to save the little hair she had while she had it.
It wouldn’t last, however. And by the end of the day, it had become evident that the best thing to do would be to shave it all off. Easier said than done. I can’t imagine that Courtney ever planned on showing me the true shape of her head. I doubt that many women would want their husbands to see them that way, or even see themselves that way. It’s hard to say good-bye to something that literally is part of who you are and who you always have been. It might be just hair and it will grow back, but those facts only slightly mitigate the difficulty of removing a woman’s hair. Lots of tears were shed. I think the hardest part for Courtney wasn’t so much the actual shaving as it was having to face the fact that she’s having to shave because she has cancer.
Yet, despite the swelling, despite not having seen her children for 11 days, despite having to spend her 27th straight night in the hospital, despite her swollen feet and ankles that reminded her of Princess Fiona’s from Shrek, and despite the loss of her hair that she spent the past year growing out, she managed to have a few little laughs and some genuine smiles at the end of a very emotional day.
I must say that Courtney has a very cute melon. I had to remind her that it wasn’t her hair that first caught my attention 10 years ago. It was her beautiful eyes and gorgeous smile that had me smitten from day one. And cancer hasn’t touched those one bit.
Tuesday, October 16, 2007
Day 25 - More Better News
It was far from good, but it was a better day. Except for the lack of sleep. I only got to spend an hour and a half with her today, but from what I could tell and what she could tell me, she’s improving – ever so slightly.
The not so good news: Her hair continues to fall out. When I arrived this afternoon, she was wearing a hat for the first time. She looked really cute in it, especially since it was a Spurs hat. Thank you, Susan. – She’s still puffy from the edema. This seems to be caused by low albumin in her blood, likely due to her lack of protein consumption. They can give her albumin intravenously to help, but haven’t. I’m sure they have their reasons, but I don’t know what they are. – She still doesn’t like to eat, since everything tastes ‘crappy.’ Unfortunately, this is a side effect of the chemotherapy, and we’re not sure when the effect reverses. – Like I mentioned above, she hasn’t slept much the past 24 hours. Tracy said she woke up every hour last night, and didn’t sleep at all today. Hopefully she’ll rest well tonight. – It’s been ten days since she’s seen her children. This is really starting to take its toll on Courtney. Fortunately, she’s been fairly out of it for most of the past week, but during moments of lucidity she misses the kids more than anything else.
The better news: She’s experiencing less intestinal pain. This has been really bad the past week, but seems to be improving slightly each day. This helps her to have a better appetite, but it’s still hard for her to eat because of the ‘crappy’ reason stated above. – She was more alert today than she had been the past few days. This is an indication that she’s having to rely less on some of the medications that mentally impair her. Although, I’m not sure how alert she wants to be. If she could sleep through all of this, she would.
The more better news: Her CBC.
WBC = 600 (Doubled)
%Neutrophils = 44% (44% of 600 is better than 46% of 300)
Absolute Neutrophils = 300 (three times better); goal is 1000
Good news: Kids are all healthy.
Other news: Courtney is scheduled for an ultrasound on her abdomen, specifically her gall bladder (I think) tomorrow. This is to check to make sure there are no infections. They’re doing this because her blood work showed high levels of bilirubin. This could be a side effect of the chemotherapy, but they want to make sure it’s not due to problems with her gall bladder. Blockage of the bile ducts can be a cause of high bilirubin levels. They want to rule that out with the ultrasound.
Let’s pray that tomorrow’s ultrasound turns up nothing and the new day brings with it even better news.
The not so good news: Her hair continues to fall out. When I arrived this afternoon, she was wearing a hat for the first time. She looked really cute in it, especially since it was a Spurs hat. Thank you, Susan. – She’s still puffy from the edema. This seems to be caused by low albumin in her blood, likely due to her lack of protein consumption. They can give her albumin intravenously to help, but haven’t. I’m sure they have their reasons, but I don’t know what they are. – She still doesn’t like to eat, since everything tastes ‘crappy.’ Unfortunately, this is a side effect of the chemotherapy, and we’re not sure when the effect reverses. – Like I mentioned above, she hasn’t slept much the past 24 hours. Tracy said she woke up every hour last night, and didn’t sleep at all today. Hopefully she’ll rest well tonight. – It’s been ten days since she’s seen her children. This is really starting to take its toll on Courtney. Fortunately, she’s been fairly out of it for most of the past week, but during moments of lucidity she misses the kids more than anything else.
The better news: She’s experiencing less intestinal pain. This has been really bad the past week, but seems to be improving slightly each day. This helps her to have a better appetite, but it’s still hard for her to eat because of the ‘crappy’ reason stated above. – She was more alert today than she had been the past few days. This is an indication that she’s having to rely less on some of the medications that mentally impair her. Although, I’m not sure how alert she wants to be. If she could sleep through all of this, she would.
The more better news: Her CBC.
WBC = 600 (Doubled)
%Neutrophils = 44% (44% of 600 is better than 46% of 300)
Absolute Neutrophils = 300 (three times better); goal is 1000
Good news: Kids are all healthy.
Other news: Courtney is scheduled for an ultrasound on her abdomen, specifically her gall bladder (I think) tomorrow. This is to check to make sure there are no infections. They’re doing this because her blood work showed high levels of bilirubin. This could be a side effect of the chemotherapy, but they want to make sure it’s not due to problems with her gall bladder. Blockage of the bile ducts can be a cause of high bilirubin levels. They want to rule that out with the ultrasound.
Let’s pray that tomorrow’s ultrasound turns up nothing and the new day brings with it even better news.
Day 24 - Hospital Fun
At 4:30 this morning, like clockwork, a nurse came in to take Courtney’s blood. This is fine, because after this we can usually sleep until 9:00 or 10:00, relatively undisturbed. Not today. At 6:00 a nurse came in and told her that she couldn't eat or drink anything except a nasty tasting barium drink. Huh? Did we miss something? Apparently the doctor ordered a CT scan without letting us know. It would have been nice to have some warning and understanding as to why you're being woken up at 6:00 and told that no matter how thirsty you are (Courtney was very thirsty) you can’t drink.
She had to drink about 24 oz of the barium/juice mix which consisted of about 3 oz of barium. I think it would have been easier just to drink the barium straight (not sure if this is an option) and wash it down with the juice. Mixing it with juice just made for having to consume a greater quantity of bad tasting fluid. The weird part is that Courtney asked if she could just have some water and was told ‘No’. But then the nurse said she could dilute the barium drink mix with a little more water or juice. What’s the difference if she drinks some water by itself or mixed with the barium? Anyway, as her nurse left her with her 'drinks', she asked if Courtney needed anything else. Courtney answered, "No, but would you like juice? Only 25 cents." It's so funny when she can hardly speak, yet be so witty. Well, she did a good job of getting it all down on an empty stomach. I kinda started feeling nauseous just watching her drink them. Almost as soon as she was done they wheeled her down to the "dungeon" for her abdominal CT scan. I went down with her and was told to stay in the waiting room. I waited for about 20 minutes before asking if she was almost done, only to be told she was already back in her room. Apparently she was done in under 5 minutes. Great communication. I got a sheepish apology from the Radiology receptionist. Poor Courtney was too out of it to say anything or to even know what was going on. She didn't like the scan because she said it sounded like she was in a blender.
The other surprise this morning was when her lab results came back. Her nurse said all that had been ordered was the blood chemistry, which only consisted of the minerals (potassium, calcium, etc.) and protein. The CBC was not specifically ordered like it had been every other day, so it was not done. Her nurse did come back before noon to draw more blood to run a CBC. She also said that she would make sure that the CBC became a standing order and would be done daily.
Results of the day:
The doctors are still trying to decide what to do with the Hickman catheter. They are leaning towards removing it, but just aren’t sure what to replace it with.
The CT scan of her abdomen showed nothing unusual. This is good.
Her blood results came back with the following:
Hemoglobin = 7.2 (she needed and received blood today)
Platelets = 12000 (Needed platelets today)
WBC = 300 (Better than 100)
%Neutrophils = 46% (This is the percent of WBC’s that are Neutrophils, the most important ones for Courtney. This is better than yesterday’s 16%)
Neut. Abs. = 100 (First time to show any. This is 10% of the goal of 1000!!)
So we hope this means she’s on the mend. She said more than once today that she feels better today than she did the past couple of days. Pray that the trend continues. The other good news of the day was the Courtney’s sister, Tracy, arrived this evening from Italy to stay with her for the next 6 days and nights. Courtney was really excited to see her! Lots of tears when they embraced.
She had to drink about 24 oz of the barium/juice mix which consisted of about 3 oz of barium. I think it would have been easier just to drink the barium straight (not sure if this is an option) and wash it down with the juice. Mixing it with juice just made for having to consume a greater quantity of bad tasting fluid. The weird part is that Courtney asked if she could just have some water and was told ‘No’. But then the nurse said she could dilute the barium drink mix with a little more water or juice. What’s the difference if she drinks some water by itself or mixed with the barium? Anyway, as her nurse left her with her 'drinks', she asked if Courtney needed anything else. Courtney answered, "No, but would you like juice? Only 25 cents." It's so funny when she can hardly speak, yet be so witty. Well, she did a good job of getting it all down on an empty stomach. I kinda started feeling nauseous just watching her drink them. Almost as soon as she was done they wheeled her down to the "dungeon" for her abdominal CT scan. I went down with her and was told to stay in the waiting room. I waited for about 20 minutes before asking if she was almost done, only to be told she was already back in her room. Apparently she was done in under 5 minutes. Great communication. I got a sheepish apology from the Radiology receptionist. Poor Courtney was too out of it to say anything or to even know what was going on. She didn't like the scan because she said it sounded like she was in a blender.
The other surprise this morning was when her lab results came back. Her nurse said all that had been ordered was the blood chemistry, which only consisted of the minerals (potassium, calcium, etc.) and protein. The CBC was not specifically ordered like it had been every other day, so it was not done. Her nurse did come back before noon to draw more blood to run a CBC. She also said that she would make sure that the CBC became a standing order and would be done daily.
Results of the day:
The doctors are still trying to decide what to do with the Hickman catheter. They are leaning towards removing it, but just aren’t sure what to replace it with.
The CT scan of her abdomen showed nothing unusual. This is good.
Her blood results came back with the following:
Hemoglobin = 7.2 (she needed and received blood today)
Platelets = 12000 (Needed platelets today)
WBC = 300 (Better than 100)
%Neutrophils = 46% (This is the percent of WBC’s that are Neutrophils, the most important ones for Courtney. This is better than yesterday’s 16%)
Neut. Abs. = 100 (First time to show any. This is 10% of the goal of 1000!!)
So we hope this means she’s on the mend. She said more than once today that she feels better today than she did the past couple of days. Pray that the trend continues. The other good news of the day was the Courtney’s sister, Tracy, arrived this evening from Italy to stay with her for the next 6 days and nights. Courtney was really excited to see her! Lots of tears when they embraced.
Sunday, October 14, 2007
Day 23 - Two Words
Two people woke up this morning feeling better than the night before. When Courtney woke up this morning I asked her how she was feeling. She said, “Better.” These days it’s not very often that she uses a positive word to describe how she’s feeling. Also, upon waking up, Emma announced to my mom, “I’m not sick anymore!” She and Aidan are both pretty much back to normal and so far no one else in the house has come down with the same bug. Thanks for all the prayers!!
I want you all to know that Courtney is surrounded by love, day and night. Between her family and myself, she has had someone by her side since the moment she was diagnosed – and often times she’s had multiple companions. Her sister, Kelley, after having spent six straight exhausting nights and days with her, went home yesterday to catch up with work and rest. You don’t get much rest when sleeping in a hospital room, especially when the one you’re with is not sleeping well. Such has been the case the past few nights, as Courtney has had to deal with a lot of intestinal pain and cramping. After being gone for just a few days to catch up on work, Courtney’s mom returned on Friday to help lessen the burden. Now, since my own mother can stay with the kids at home during the night, I can stay with Courtney, while her mom stays with her during the days. Despite the fact I don’t get nearly as much sleep here in the hospital, it’s much more pleasant being able to be near her, than being by myself in our bed at home. After sharing a bed with someone for ten straight years, it’s tough getting used to having it to yourself; which is fine, cause I don’t want to get used to it.
This morning, Courtney asked why she was so nice to the people who came in at 4:00 AM to take her blood. Even she’s amazed at what a wonderfully nice person she is. Courtney’s mom shared this conversation Courtney had with the nurse technician, Blake, today:
As for her blood counts, we’re still waiting for her WBC’s to return. Right now they’re at 100. Normal is 4000 to 11000. The oncologist on call today, Dr. Young, said we really shouldn’t expect to see anything until Thursday or Friday. She said that everything that is going on with Courtney is normal for a patient in her situation. The other thing she discussed was the possibility of removing the Hickman catheter in her chest (where they give her the meds and draw her blood) and replacing it with either another Hickman on the other side of her chest or a PICC line in the arm that doesn’t have a healing incision from the previous attempt at a PICC line. The reason for removing the Hickman is that they’ve discovered it’s a source of yeast that’s getting into her bloodstream. This is apparently within the confines of normalcy. Tomorrow they will weigh the risk of leaving it in and developing a potentially dangerous blood borne yeast infection vs. performing minor surgery with the risk of excessive blood loss (due to low platelets) and/or infection. It appears they’re leaning toward replacing it. This could happen as soon as tomorrow.
Courtney just asked me what I was doing. When I told her that I was writing about today, she said, “You only need to write two words: Cancer sucks.” That pretty much sums it up.
I want you all to know that Courtney is surrounded by love, day and night. Between her family and myself, she has had someone by her side since the moment she was diagnosed – and often times she’s had multiple companions. Her sister, Kelley, after having spent six straight exhausting nights and days with her, went home yesterday to catch up with work and rest. You don’t get much rest when sleeping in a hospital room, especially when the one you’re with is not sleeping well. Such has been the case the past few nights, as Courtney has had to deal with a lot of intestinal pain and cramping. After being gone for just a few days to catch up on work, Courtney’s mom returned on Friday to help lessen the burden. Now, since my own mother can stay with the kids at home during the night, I can stay with Courtney, while her mom stays with her during the days. Despite the fact I don’t get nearly as much sleep here in the hospital, it’s much more pleasant being able to be near her, than being by myself in our bed at home. After sharing a bed with someone for ten straight years, it’s tough getting used to having it to yourself; which is fine, cause I don’t want to get used to it.
This morning, Courtney asked why she was so nice to the people who came in at 4:00 AM to take her blood. Even she’s amazed at what a wonderfully nice person she is. Courtney’s mom shared this conversation Courtney had with the nurse technician, Blake, today:
“We now have the screen up in the room between the door and the hall - Blake just asked her why and she told him to keep germs out - then he asked if she needed anything and she told him no - but that she liked the other nurse better - she could bring drugs - he teased her and said fine - he would come in last - but then she said no - he was in the middle - he asked who was below him and she said the person who comes and takes blood - he laughed and said great - before the blood sucker and after the drug pusher and she said yes, that's right!!! then she comments that she is still nice to all of the people that come in her room... gotta love it"
As for her blood counts, we’re still waiting for her WBC’s to return. Right now they’re at 100. Normal is 4000 to 11000. The oncologist on call today, Dr. Young, said we really shouldn’t expect to see anything until Thursday or Friday. She said that everything that is going on with Courtney is normal for a patient in her situation. The other thing she discussed was the possibility of removing the Hickman catheter in her chest (where they give her the meds and draw her blood) and replacing it with either another Hickman on the other side of her chest or a PICC line in the arm that doesn’t have a healing incision from the previous attempt at a PICC line. The reason for removing the Hickman is that they’ve discovered it’s a source of yeast that’s getting into her bloodstream. This is apparently within the confines of normalcy. Tomorrow they will weigh the risk of leaving it in and developing a potentially dangerous blood borne yeast infection vs. performing minor surgery with the risk of excessive blood loss (due to low platelets) and/or infection. It appears they’re leaning toward replacing it. This could happen as soon as tomorrow.
Courtney just asked me what I was doing. When I told her that I was writing about today, she said, “You only need to write two words: Cancer sucks.” That pretty much sums it up.
Saturday, October 13, 2007
Day 22
Despite the fact that Courtney had a miserable day, by her own account, and that Emma woke up still battling a stomach bug, it was an amazing day. Again, I only wish Courtney could experience all that is happening outside the hospital to support her.
The day started off with a visit from a neighbor I hardly knew, who had come over to mow my lawn. Thank you Jay! That allowed us to get of the house a little earlier so we could head over to Celebrate Roanoke before Aidan’s nap. There we were able to stop by the tables set up for Courtney’s behalf. Thank you to all those who pitched in and helped organize that and to the many who contributed. I nearly broke down in tears witnessing the love and support expressed by so many. Aidan especially liked the little basketball game. The girls thought it was neat seeing pictures of them with Courtney on the donation cans at several of the vendors’ booths.
We were also able to visit the garage sale at the Luna-Llanes’ home. Thank you to them and the Goodrich’s and everyone who helped support that as well! I couldn’t believe all the stuff they had, and apparently that wasn’t half of it. Truly amazing. Being able to enjoy these moments is somewhat bittersweet. I find myself feeling guilty for having a fun and enjoyable day with the children, knowing that Courtney is suffering miserably in a hospital room that she’s been confined in for three weeks. However, I know she wants nothing more than for our kids to be able to enjoy the same activities they would be doing if she never got sick. I know it makes her happy to know they’re doing well and having fun, albeit with remorse that she can’t be with them.
As for her current condition, she’s sleeping well at the moment. She’s still battling the intestinal discomfort and hair loss that have been going on for about four days now. But now she has to endure an achy back and fluid retention as well. As if she didn’t have enough to deal with already. It seems, though, that today was slightly better than yesterday. So, let’s all pray that the worst is truly behind us.
Here's an awesome slideshow courtesy of Amy Pennington!
The day started off with a visit from a neighbor I hardly knew, who had come over to mow my lawn. Thank you Jay! That allowed us to get of the house a little earlier so we could head over to Celebrate Roanoke before Aidan’s nap. There we were able to stop by the tables set up for Courtney’s behalf. Thank you to all those who pitched in and helped organize that and to the many who contributed. I nearly broke down in tears witnessing the love and support expressed by so many. Aidan especially liked the little basketball game. The girls thought it was neat seeing pictures of them with Courtney on the donation cans at several of the vendors’ booths.
We were also able to visit the garage sale at the Luna-Llanes’ home. Thank you to them and the Goodrich’s and everyone who helped support that as well! I couldn’t believe all the stuff they had, and apparently that wasn’t half of it. Truly amazing. Being able to enjoy these moments is somewhat bittersweet. I find myself feeling guilty for having a fun and enjoyable day with the children, knowing that Courtney is suffering miserably in a hospital room that she’s been confined in for three weeks. However, I know she wants nothing more than for our kids to be able to enjoy the same activities they would be doing if she never got sick. I know it makes her happy to know they’re doing well and having fun, albeit with remorse that she can’t be with them.
As for her current condition, she’s sleeping well at the moment. She’s still battling the intestinal discomfort and hair loss that have been going on for about four days now. But now she has to endure an achy back and fluid retention as well. As if she didn’t have enough to deal with already. It seems, though, that today was slightly better than yesterday. So, let’s all pray that the worst is truly behind us.
Here's an awesome slideshow courtesy of Amy Pennington!
Friday, October 12, 2007
Day 21
I talked to Courtney for about 10 minutes today. I doubt she’ll remember it. I saw her for about 5 minutes today. I know she won’t remember it. I suppose the greatest blessing of the last 3 days or so is that she probably won’t remember much of what transpired. That’s good. She’s said from the beginning that she wishes she could just sleep through it all and wake up when the whole ordeal is over.
I only wish she could be out of the hospital to witness all of the wonderful service being offered on her behalf. (Except that it would probably make her cry and she hates crying.) Yesterday, Amy Pennington dropped off our Courtney’s Angels T-shirts. They’re awesome. I’m still amazed at how quickly those were created and delivered. Today I stopped by at the tail end of the blood drive. Thank you Michelle, Amy, Maclaine, Doug and all of those who were able to donate and to all those who would if given the opportunity. The man from the donation center commented that is was a great turnout! Twenty-seven pints of blood were collected, and eleven more tried! They’re planning on having another one in January. Hopefully this trial will be over with by then, but it’s still a great opportunity to give.
Again, thank you all for your thoughts and prayers. Aidan was back to his normal self today, while Emma, though not throwing up as much, is still fighting this crummy virus. Hopefully she’ll be well enough to go to Celebrate Roanoke tomorrow. I tried to get her excited about the fireworks, but she said, “They’re too loud.” I think she’ll enjoy them anyway. It’s kinda hard having fun, know what Courtney’s going through and knowing how much she’d want to be with us. But I also know that she wants the kids to be able to do all the things they would normally be doing. So, were trying our best to keep the routine. It’s amazing how they’re coping. I know how much they miss her, but they’ve been so mature about it. They just keep hoping she’s home in time for Halloween. But they understand that she just has to stay there until the doctors and medication are able to make her better. Once again, I truly believe prayers are being answered on their and Courtney’s behalf.
I only wish she could be out of the hospital to witness all of the wonderful service being offered on her behalf. (Except that it would probably make her cry and she hates crying.) Yesterday, Amy Pennington dropped off our Courtney’s Angels T-shirts. They’re awesome. I’m still amazed at how quickly those were created and delivered. Today I stopped by at the tail end of the blood drive. Thank you Michelle, Amy, Maclaine, Doug and all of those who were able to donate and to all those who would if given the opportunity. The man from the donation center commented that is was a great turnout! Twenty-seven pints of blood were collected, and eleven more tried! They’re planning on having another one in January. Hopefully this trial will be over with by then, but it’s still a great opportunity to give.
Again, thank you all for your thoughts and prayers. Aidan was back to his normal self today, while Emma, though not throwing up as much, is still fighting this crummy virus. Hopefully she’ll be well enough to go to Celebrate Roanoke tomorrow. I tried to get her excited about the fireworks, but she said, “They’re too loud.” I think she’ll enjoy them anyway. It’s kinda hard having fun, know what Courtney’s going through and knowing how much she’d want to be with us. But I also know that she wants the kids to be able to do all the things they would normally be doing. So, were trying our best to keep the routine. It’s amazing how they’re coping. I know how much they miss her, but they’ve been so mature about it. They just keep hoping she’s home in time for Halloween. But they understand that she just has to stay there until the doctors and medication are able to make her better. Once again, I truly believe prayers are being answered on their and Courtney’s behalf.
Thursday, October 11, 2007
Day 20 - Hoping for a better day
Just when you think it can't get much worse, you're proved wrong. OK, so I suppose when you're dealing with cancer it can always get worse. I just wish it wouldn't. At some point it has to get better...much better.
Courtney had a bad day. So bad, in fact, I was only able to speak with her for about 10 minutes total. Here's the summary from Kelley:
We're so blessed to have had so much help from Courtney's family - especially her sisters who have been able to stay with her at nights, so I can be with the children.
As I was elbows deep in vomit today, I didn't dare go to the hospital. Emma went through the night and into this evening throwing up every 1-2 hours. Aidan began at 8:00 AM with the same thing. (I don't know what I would've done if my sister, Ashley, wasn't here to help this morning.) Both Aidan and Emma have been sleeping soundly for the past few hours, so it looks like it's behind us. Emma never really got upset. She just slept, watched TV and threw up all day. Aidan on the other hand seemed to have more pain and cramping, as he cried frequently in between bouts of throwing up. Funny thing happened with him - I had just started talking to Courtney when he woke up crying, seemingly in pain. I held him for a minute and when he quieted down, I called her back. He spoke to her for a moment before she had to go. Immediately after that, he started smiling (for the first time all day) and hit me repeatedly on my head. The he plopped off the couch, went to his room to play for a few minutes, then headed down stairs where he demanded to be fed. He ate for about 30 minutes. after which he began to run around the house for the next hour like he had never been sick. Of all the times we've dealt with sick children, that was the fastest, most remarkable turn around I'd ever seen, and it began with a short conversation with Courtney. I can only hope he had a similar effect on her.
Courtney had a bad day. So bad, in fact, I was only able to speak with her for about 10 minutes total. Here's the summary from Kelley:
Hey.
Well, we went from a great day yesterday to an absolute crummy one today. Courtney is now asleep and hopefully will sleep through much of the night and feel better.The platelets did their job -- no more blood. :) She had a x-ray of her stomach..but I am not sure when that report will come in. The doctor said that he was doing that for our peace of mind and did not expect much other than gas (which was confirmed just by them looking at it in the room). She got her second bag of platelets an hour ago and will be fine on numbers.
She really just felt crummy. I felt so bad for her...but glad the platelets solved the blood issue. Her hemoglobin was re-tested and was the same...which means she really did not lose much blood. It just looked worse than it was!
She missed talking to a lot of her docs today -- but they all came in. Her Infectious Disease doctor's partner came in briefly and said he would be back tomorrow since Court was unavailable at the time. Since Courtney had a low grade fever, they cultured her blood last night at 2 am. It came back positive for a gram positive bacteria. Don't panic! It is much better than those nasty gram negative infections (which if she should get one day are treatable) or fungal infections. They are putting her back on the vancomycin to knock it out and added a few more to her arsenal. So...she will feel crummy for a while but will get over this hump. Just wanted to let you know everything I do. Please do not worry about me saying she has an infection. They will treat it as they should. This could help account for the fact that we have not seen an increase in her WBCs too...so tomorrow we will know more.
We are both going to try to get some sleep tonight. I will email all in the morning...hopefully the morning that will bring a MUCH better feeling Courtney.
Oh yeah...in her drug induced stupor, she asked: Is Chris really going to shave his head? ;) (Chris is Courtney's older brother who promised to shave his head if she lost her hair.)
On that note...her head looks the same...but know it is not. More hair is coming out but in strands and not clumps. Today she really did not care about that though!
love you.
Kelley
We're so blessed to have had so much help from Courtney's family - especially her sisters who have been able to stay with her at nights, so I can be with the children.
As I was elbows deep in vomit today, I didn't dare go to the hospital. Emma went through the night and into this evening throwing up every 1-2 hours. Aidan began at 8:00 AM with the same thing. (I don't know what I would've done if my sister, Ashley, wasn't here to help this morning.) Both Aidan and Emma have been sleeping soundly for the past few hours, so it looks like it's behind us. Emma never really got upset. She just slept, watched TV and threw up all day. Aidan on the other hand seemed to have more pain and cramping, as he cried frequently in between bouts of throwing up. Funny thing happened with him - I had just started talking to Courtney when he woke up crying, seemingly in pain. I held him for a minute and when he quieted down, I called her back. He spoke to her for a moment before she had to go. Immediately after that, he started smiling (for the first time all day) and hit me repeatedly on my head. The he plopped off the couch, went to his room to play for a few minutes, then headed down stairs where he demanded to be fed. He ate for about 30 minutes. after which he began to run around the house for the next hour like he had never been sick. Of all the times we've dealt with sick children, that was the fastest, most remarkable turn around I'd ever seen, and it began with a short conversation with Courtney. I can only hope he had a similar effect on her.
Wednesday, October 10, 2007
Day 19 - Better than Day 18
She smiled today. When I left her just after noon today, she had a smile on her face and said she felt good. That alone is an indication that her day was a better one. Here's what her sister Kelley had to say:
Emma had a fever when I went to bed last night so I had her sleep with me. I let her sleep in, but since she was feeling fine and had no fever, I took her to school. Then, when I got home from work she had a fever again but still said she was feeling fine. She looked tired and felt warm so I laid her in our bed. Shortly thereafter she threw up. Apparently this is the 'feel good' virus. Usually vomiting causes a lot of crying, but, oddly enough, she laughed in the shower as the vomit was washed off her. Then she started singing, "What will you wear Jenny Jenkins?" I didn't even know she knew the words to the song. It was very cute, and I was glad she wasn't 'feeling' sick despite obviously being sick.
Unfortunately, being around and caring for sick children necessitates that I take extra precautions with regards to my visits to Courtney. So, the surest way of keeping whatever germs I have from being transferred to Courtney is to not visit her at all. That's easier said than done. The extra bed in her hospital room isn't nearly as comfortable as our bed at home, but I would give anything to be with her each day and night, even if that meant sleeping on the floor. Well, anything except leaving a sick child at home without a parent. I gotta go. A smiling Emma just came from her room covered in you know what.
Hey everyone! I wanted to let you know....we are not avoiding calls! Sorry! I think just about everyone called today....and we were ASLEEP. :) Yup...great sleep. Courtney is feeling 100% better today and we took advantage of it....by taking naps.
We are just getting up and will go for a walk before dinner. So...if you call this evening, we should be awake and answering the phone.
They stopped her heavy duty antibiotic (she is still on one) and switched some meds up a little....so we are really hoping the worst is over. She probably will still have some stomach problems...but hopefully not as bad. This is day 14 since the chemo started. So...she is either right on the hump or just starting the other side of it! That is good.
Her counts were good: .1 WBCs, and her platelets and hemoglobin were high enough she did not need any blood products. She probably will tomorrow...but for today we are enjoying it. Everything else was pretty much the same. The doctor said we may see some blasts pop up during the recovery phase and not to worry...that does happen and does not mean anything. I really like Dr. Jordan's partner! So...that is my afternoon update! Going to get something to drink and we are going to take it easy.
love you. Kelley
Emma had a fever when I went to bed last night so I had her sleep with me. I let her sleep in, but since she was feeling fine and had no fever, I took her to school. Then, when I got home from work she had a fever again but still said she was feeling fine. She looked tired and felt warm so I laid her in our bed. Shortly thereafter she threw up. Apparently this is the 'feel good' virus. Usually vomiting causes a lot of crying, but, oddly enough, she laughed in the shower as the vomit was washed off her. Then she started singing, "What will you wear Jenny Jenkins?" I didn't even know she knew the words to the song. It was very cute, and I was glad she wasn't 'feeling' sick despite obviously being sick.
Unfortunately, being around and caring for sick children necessitates that I take extra precautions with regards to my visits to Courtney. So, the surest way of keeping whatever germs I have from being transferred to Courtney is to not visit her at all. That's easier said than done. The extra bed in her hospital room isn't nearly as comfortable as our bed at home, but I would give anything to be with her each day and night, even if that meant sleeping on the floor. Well, anything except leaving a sick child at home without a parent. I gotta go. A smiling Emma just came from her room covered in you know what.
Tuesday, October 9, 2007
Day 18 - Side effects
Unfortunately, today was not a very good one for Courtney. She started off the day with really low red blood cells. Anemia - it makes you weak and tired. She didn't get blood until the end of the day. So, she should have plenty of energy in her dreams tonight. Hopefully she'll wake up feeling slightly better than this morning. However, that probably won't be the case. The crummy day ended on an even crummier note as her body decided her haircut wasn't short enough. Just when we thought she might be out of the woods with regards to chemo side effects, one more has to rear its ugly head.
"Cancer sucks." That pretty much sums it up. Sorry. I tried hard to think of another way to phrase that, but nothing seems to do it justice. Except for the outpouring of love we've received, there really aren't many good aspects of cancer. My heart goes out to everyone, young and old, who has ever had to battle it, in whatever form it comes in. It's a hard battle to fight; fortunately we don't have to fight it alone.
"Cancer sucks." That pretty much sums it up. Sorry. I tried hard to think of another way to phrase that, but nothing seems to do it justice. Except for the outpouring of love we've received, there really aren't many good aspects of cancer. My heart goes out to everyone, young and old, who has ever had to battle it, in whatever form it comes in. It's a hard battle to fight; fortunately we don't have to fight it alone.
Monday, October 8, 2007
Day 17 - Mini Makeover Day
I don’t know this first hand, but apparently, when you spend a lot of time in a hospital bed, it’s nice to have short manageable hair as opposed to long hair that’s easily tangled and requires extra maintenance. That’s why Courtney asked a friend to come to the hospital and cut her hair. It took a few days to coordinate schedules, but Courtney was finally able to get the hair cut she’s been dreaming of…for the last five days. I love it and she does too. Thank you Angela!
As for the reason she’s in the hospital, nothing has really changed. We’re well into the watch and wait phase of the treatment. Her WBC’s are 100 and she had a few monocytes show up. Dr. Jordan said this could indicate that her bone marrow may be coming back online. Overall, she had a really good day. While the medications make her somewhat loopy, they seem to really help keep the nausea at bay. Unfortunately, she’s not 100% free of the intestinal discomfort. That’s her main source of discomfort for the time being. And one more thing Dr. Jordan mentioned was that she’s likely on the downward trend of chemo side effects as they slowly dissipate from her body. Hopefully that means the worst is truly behind her.
As for the reason she’s in the hospital, nothing has really changed. We’re well into the watch and wait phase of the treatment. Her WBC’s are 100 and she had a few monocytes show up. Dr. Jordan said this could indicate that her bone marrow may be coming back online. Overall, she had a really good day. While the medications make her somewhat loopy, they seem to really help keep the nausea at bay. Unfortunately, she’s not 100% free of the intestinal discomfort. That’s her main source of discomfort for the time being. And one more thing Dr. Jordan mentioned was that she’s likely on the downward trend of chemo side effects as they slowly dissipate from her body. Hopefully that means the worst is truly behind her.
Sunday, October 7, 2007
Day 16 - Restless Nights
Hospitals are not easy places to rest, especially when you’re sick, which I suppose would be almost always, if you’re sleeping in a hospital. First, you have your own discomfort to deal with. Of course, if you’re sick, you probably have discomfort of some kind. In Courtney’s case it’s been one after another – sore throat when admitted, surgery soreness, intestinal pain and blockage due to pain medication (kind of ironic), nausea from the chemo, dry lips and mouth from the chemo, more intestinal problems (this time from the antibiotics), fever, sore back from sleeping awkwardly and anxiety to top it all off. So, needless to say, she’s become very grateful for sleeping medications and pain medications and anti-nausea medications and anti-anxiety medications and anti-intestinal discomfort medications and chapstick.
Second, there are frequent interruptions. The nurses come in at odd hours to check your vitals, because, well they’re vital. They also come in at 4:00AM to take blood so they can have results early in the day. Your bladder interrupts your sleep, because when you’re hospitalized, you’re constantly administered IV fluid. And what fluids go in must come out. The IV pumps wake you up when their irritating alarm sounds because there’s air in the line, or the line has been crimped or the bag has emptied or for no apparent reason at all. Sometimes they just like to beep…but only at night.
Also, Doctors seem to enjoy visiting at the most inopportune times. In Courtney’s case it’s when she’s showering or sleeping. For instance, the infectious disease doctor decided to arrive this morning at 8:20. Now this may not seem so early, but when you have all the above conspiring together to prevent you from sleeping soundly, sleeping past 8:20 becomes very desirable. Anyway, the doctor didn’t seem to provide any new or valuable information other than to say it’s good that she doesn’t still have a fever and that he’ll be checking in on her from time to time, i.e. disturbing her sleep from time to time. But we’re grateful to have another doctor looking out for harmful infections.
So, other than the lack of adequate and sound rest and the aforementioned discomforts and a short nose bleed, Courtney had an OK day. I think, however, she’d rather be at home, Leukemia free. We can only hope for, pray for and look forward to that glorious day.
Second, there are frequent interruptions. The nurses come in at odd hours to check your vitals, because, well they’re vital. They also come in at 4:00AM to take blood so they can have results early in the day. Your bladder interrupts your sleep, because when you’re hospitalized, you’re constantly administered IV fluid. And what fluids go in must come out. The IV pumps wake you up when their irritating alarm sounds because there’s air in the line, or the line has been crimped or the bag has emptied or for no apparent reason at all. Sometimes they just like to beep…but only at night.
Also, Doctors seem to enjoy visiting at the most inopportune times. In Courtney’s case it’s when she’s showering or sleeping. For instance, the infectious disease doctor decided to arrive this morning at 8:20. Now this may not seem so early, but when you have all the above conspiring together to prevent you from sleeping soundly, sleeping past 8:20 becomes very desirable. Anyway, the doctor didn’t seem to provide any new or valuable information other than to say it’s good that she doesn’t still have a fever and that he’ll be checking in on her from time to time, i.e. disturbing her sleep from time to time. But we’re grateful to have another doctor looking out for harmful infections.
So, other than the lack of adequate and sound rest and the aforementioned discomforts and a short nose bleed, Courtney had an OK day. I think, however, she’d rather be at home, Leukemia free. We can only hope for, pray for and look forward to that glorious day.
Saturday, October 6, 2007
Day 15 - Aidan 2.1
After a couple days and nights of up and down temperatures and uncooperating bowels, Courtney finally had a good day with virtually no fever and no cramps. So, we were able to do what we had planned: have a small birthday party for Aidan at the hospital.
Today was the day after his birthday, but, being only 2, Aidan didn't seem to mind one bit that we celebrated a day late. He's such a sweet kid. I took him to Walmart so he could pick out his own presents. I fully expected him to gravitate to some particular toy or two and not want to part with it, thus making my job of choosing his birthday gifts easy. However, every time he showed interest in a toy, he would cheerfully leave it alone when I said, "Let's go." The one time I want a kid to insist on keeping the toy, he doesn't do it. Nevertheless, I was able to pick out a couple he seemed to show extra interest in.
So, we loaded up the presents, the cookie cake my sister Ashley made and some party hats and headed to the hospital. Upon arrival to the family room on Courtney's floor, we sanitized hands, attempted to put masks on all the kids and sang "Happy Bithday" to Aidan. He then had a blast licking the frosting off his portion of the cookie cake and tearing the wrapping paper off the presents he picked out earlier. He still managed to act surprised even though he had just played with them in the shopping cart earlier in the day. He's so considerate!
Tomorrow, Courtney should receive a visit from a doctor that specializes in infectious disease. Her internist wants to make sure there are no detectable signs of infection of any kind after her episodic fevers the past couple of days. It's only precautionary, but were thankful for it as it shows the care and concern the doctors have for Courtney. The good news to date is that so far her blood and urine cultures and chest x-ray have all been negative. (Even though 'negative' sounds negative, it's really positive, because it means they didn't find any bad bugs swimming around in her blood or urine. Just in case anyone was wondering.)
Friday, October 5, 2007
Day 14 - Milestones
Today marks two weeks since the official diagnosis at the oncologist's office. It's still hard to believe everything that has happened. Every day has been unique and every day has given forth a milestone of some sort. I think, maybe, that's helped the time go by rather quickly.
Today's milestones: Chemotherapy is finished and her blood results showed 0.0 WBC's and 2% blasts! I haven't been able to talk to Courtney yet this morning, but I received the following from her sister, Susan:
Another important milestone for today is Aidan's 2nd birthday! Hopefully we'll get a chance to have a small celebration at the hospital tomorrow. I know this must be especially difficult for Courtney to not be home today. But, rest assured, we will make up for missed parties when she gets home!
Today's milestones: Chemotherapy is finished and her blood results showed 0.0 WBC's and 2% blasts! I haven't been able to talk to Courtney yet this morning, but I received the following from her sister, Susan:
Corky is asleep-- it was a long night with lots of folks checking in on her. Her
temp went back to normal by 10PM, she finally received her platelets, but around
3AM she was starting to feel sick. Thank goodness for medicine! She was still running a close to normal temp until about 8:30 this morning, but after getting up, it went back up to 102. She's taken meds and tylenol to get it back down and is now resting.Now for the drum roll please....Her WBC are 0.0! Blasts are at 2%. They unhooked her from her last bag of chemo last night at 1:50am and it did its stuff! We did a quiet "woohoo!" last night and this morning when we saw her counts. The good news: it's working. The bad: she is probably going to feel crummy for a while.
Another important milestone for today is Aidan's 2nd birthday! Hopefully we'll get a chance to have a small celebration at the hospital tomorrow. I know this must be especially difficult for Courtney to not be home today. But, rest assured, we will make up for missed parties when she gets home!
Thursday, October 4, 2007
Speechless
I just received the following information from Michelle Miller:
_________________________________________________________
BLOOD DRIVE: Friday October 12th 8am - 4pm at the Roanoke Recreation Center. Please email Maclaine Robinson at Maclaine_bliss@hotmail.com to schedule a time to donate. Walk-ins are welcome, but if you're busy and need a specific time, email Maclaine and request a time that meets your schedule. Friday is a half day from school so please schedule accordingly. All the blood donated provides credits for Courtney's needs. Thank you to our city councilman, Kevin Stillwell, our city manager, Jimmy Stathatos, and to Ronnie Angel and Mike Arndt of the Recreation Center for offering the Recreation Center and for your assistance.
Celebrate Roanoke: (<-click for details) October 13th there will be a booth with information on Courtney at the corner of Oak and Travis from 9am to 7pm. Come by and buy a Courtney's Angels t-shirt to benefit the medical fund for Courtney. Donation boxes will be set up in different spots around the festival as well. If you would like to help Marilyn Walser make donation boxes or help her at the booth that Saturday, please email her at savedzero@yahoo.com. Click here for info about the t-shirt.
Garage Sale: October 13th hosted at the home of Emily Luna-Llanes in the Lost Creek neighborhood - 3408 Bandera Ranch. Contact Emily at comical5@1scom.net to volunteer to help.
Garage Sale: October 20th hosted at the home of Laura Fillmore in the Trophy Club neighborhood 558 Indian Creek Drive. Contact Allison to volunteer to help at allisonjpierce@yahoo.com.
Courtney's Angels Fund: with Bank of America. Go into any Bank of America and have them look up the Courtney's Angels account for you or give them acct #488009937521. If you'd like to transfer money, use routing # 111000025.
I am very grateful to live in the community of Roanoke. It is nice to see the town, the school and the churches pull their resources together to help a family as wonderful as the Flynn family during their time of need.
Thanks,
Michelle Miller
_________________________________________________________
I am at a loss for words to describe how grateful we are for all of the support we've received during this ordeal. I think I may actually wear out the word 'Thank-you' if that's possible. There really aren't enough ways to say or express gratitude. Please know that we are eternally grateful for everything. . .except for maybe the leukemia.
_________________________________________________________
BLOOD DRIVE: Friday October 12th 8am - 4pm at the Roanoke Recreation Center. Please email Maclaine Robinson at Maclaine_bliss@hotmail.com to schedule a time to donate. Walk-ins are welcome, but if you're busy and need a specific time, email Maclaine and request a time that meets your schedule. Friday is a half day from school so please schedule accordingly. All the blood donated provides credits for Courtney's needs. Thank you to our city councilman, Kevin Stillwell, our city manager, Jimmy Stathatos, and to Ronnie Angel and Mike Arndt of the Recreation Center for offering the Recreation Center and for your assistance.
Celebrate Roanoke: (<-click for details) October 13th there will be a booth with information on Courtney at the corner of Oak and Travis from 9am to 7pm. Come by and buy a Courtney's Angels t-shirt to benefit the medical fund for Courtney. Donation boxes will be set up in different spots around the festival as well. If you would like to help Marilyn Walser make donation boxes or help her at the booth that Saturday, please email her at savedzero@yahoo.com. Click here for info about the t-shirt.
Garage Sale: October 13th hosted at the home of Emily Luna-Llanes in the Lost Creek neighborhood - 3408 Bandera Ranch. Contact Emily at comical5@1scom.net to volunteer to help.
Garage Sale: October 20th hosted at the home of Laura Fillmore in the Trophy Club neighborhood 558 Indian Creek Drive. Contact Allison to volunteer to help at allisonjpierce@yahoo.com.
Courtney's Angels Fund: with Bank of America. Go into any Bank of America and have them look up the Courtney's Angels account for you or give them acct #488009937521. If you'd like to transfer money, use routing # 111000025.
I am very grateful to live in the community of Roanoke. It is nice to see the town, the school and the churches pull their resources together to help a family as wonderful as the Flynn family during their time of need.
Thanks,
Michelle Miller
_________________________________________________________
I am at a loss for words to describe how grateful we are for all of the support we've received during this ordeal. I think I may actually wear out the word 'Thank-you' if that's possible. There really aren't enough ways to say or express gratitude. Please know that we are eternally grateful for everything. . .except for maybe the leukemia.
Day 13 - PM
Well, one thing’s for sure, Leukemia keeps you on your toes, with no two days being alike. I truly thought today would be like yesterday – similar blood results, lots of visits from the nurses, a stroll up and down the hallway, an afternoon nap and a good night’s rest. Then she wakes up with a fever, not feeling well. Even though virtually every patient undergoing chemotherapy similar to Courtney’s, where the white blood cells are wiped out, experience fevers, precautions still have to be taken. That means more blood drawn for culturing (three days for results) and urine sample for the same thing and chest x-rays.
So, Courtney got to go on a field trip. It’s not very often that they let her leave her floor. Unfortunately, the field trip was to the hospital’s dungeon. OK, so it’s not a dungeon, but at night, when no one is around, it has to be one of the creepiest places on earth. Long narrow hallways, empty gurneys lining the walls and 6 ½ foot ceilings that make you feel much taller than normal. The first time Courtney made a trip down there, she was laying on her back as they transported her from the ER to her room. She commented on how eerie the trip was as she was rolled down the hallways so close to the ceiling. Well, radiology is in the dungeon, so she got to go there for her chest x-ray. The reason for the x-ray is to make sure there’s no infection or fluid collecting in her lungs. It’s apparently standard procedure whenever there’s a fever over 100.
After the trip, she was feeling a little better. So we took a walk down all four wings of her floor and ended with a short game of dominoes before she started getting drowsy. Shortly thereafter it was time for me to go home to have dinner with the kids. The day went by really fast. Actually, it’s hard to believe how fast the past 14 days have gone. That’s really encouraging since we're looking at another 14 days or more in the hospital. If the next two weeks go by as fast as the last two, we’ll be home in no time.
The last time I talked to her was about 7:30. She sounded tired and said she wasn’t feeling so well. Let’s hope and pray that she sleeps well tonight and wakes up feeling much better than she did this morning.
So, Courtney got to go on a field trip. It’s not very often that they let her leave her floor. Unfortunately, the field trip was to the hospital’s dungeon. OK, so it’s not a dungeon, but at night, when no one is around, it has to be one of the creepiest places on earth. Long narrow hallways, empty gurneys lining the walls and 6 ½ foot ceilings that make you feel much taller than normal. The first time Courtney made a trip down there, she was laying on her back as they transported her from the ER to her room. She commented on how eerie the trip was as she was rolled down the hallways so close to the ceiling. Well, radiology is in the dungeon, so she got to go there for her chest x-ray. The reason for the x-ray is to make sure there’s no infection or fluid collecting in her lungs. It’s apparently standard procedure whenever there’s a fever over 100.
After the trip, she was feeling a little better. So we took a walk down all four wings of her floor and ended with a short game of dominoes before she started getting drowsy. Shortly thereafter it was time for me to go home to have dinner with the kids. The day went by really fast. Actually, it’s hard to believe how fast the past 14 days have gone. That’s really encouraging since we're looking at another 14 days or more in the hospital. If the next two weeks go by as fast as the last two, we’ll be home in no time.
The last time I talked to her was about 7:30. She sounded tired and said she wasn’t feeling so well. Let’s hope and pray that she sleeps well tonight and wakes up feeling much better than she did this morning.
Day 13 - Mid-day update
Susan (Courtney's sister) here with a mid-day update. Dr. Jordan is in here now giving Courtney a look over-- she is running a slight fever and her WBC counts are up marginally from 100 to 300, but he said 90% of patients get similar fevers and see a small rise in the counts before bottoming out completely.
Last night a small cheer went up as she was hooked up to her last bag of chemo at 1AM. I would like all of you to know that while there are the inevitable moments of anxiety, fear, and disbelief that this is actually happening; Courtney is keeping her spirits up, her sense of humor sharp and her resolve to beat this strong. Her room may be filled with drugs and machines to administer the life saving chemicals; but it is also filled with cards and photos from people that love and support her. She constantly has her care givers laughing as she recounts moments of her day that can only be classified as comical. And once she takes medicine to help her sleep, she will give a verbal warning that she is done talking and falling asleep.... only to start up again a few minutes later, usually with a giggle or two thrown in for good measure. I can't tell you how wonderful it is to hear her soft laughter before she falls into a deep and restful sleep.
Last night a small cheer went up as she was hooked up to her last bag of chemo at 1AM. I would like all of you to know that while there are the inevitable moments of anxiety, fear, and disbelief that this is actually happening; Courtney is keeping her spirits up, her sense of humor sharp and her resolve to beat this strong. Her room may be filled with drugs and machines to administer the life saving chemicals; but it is also filled with cards and photos from people that love and support her. She constantly has her care givers laughing as she recounts moments of her day that can only be classified as comical. And once she takes medicine to help her sleep, she will give a verbal warning that she is done talking and falling asleep.... only to start up again a few minutes later, usually with a giggle or two thrown in for good measure. I can't tell you how wonderful it is to hear her soft laughter before she falls into a deep and restful sleep.
Wednesday, October 3, 2007
Day 12 - Reality Bites
The 'therapy' continues to progress as hoped. Her WBC counts are virtually zero. Her blasts are 8%. Her Hemoglobin was too low, so she received blood again. We really are at a point where it's essentially watch and wait. I think if we had to wait for a couple more days to know if the therapy is putting her into remission, it would be an excruciatingly long two days. Too bad we have to wait at least two more weeks!!
We keep saying to each other, "This doesn't seem real," and "this can't really be happening." I'm sure everyone confronted with a life threatening disease or trial has the same thoughts. But it's so much different when it's YOUR life. The one good thing about having a hard time believing that this is real, is that you don't feel the impact as badly. The disbelief somewhat lessons the shock and pain of it all.
Then there are the moments when "it's all too real." When you know with a certainty that you're dealing with cancer, and staying for weeks not days in a hospital, and getting chemicals pumped into your body. When you realize how bad it could be if not for wise doctors and a good hospital. When you know that the life you knew up until a couple weeks ago is moving along without you. When you feel the physical pain and weakness caused by the disease in your body. When you go days without seeing your own children. When you look forward to a drug induced sleep so you can escape the reality for a few precious hours and yearn to not wake up until it's all over.
Dream world: Courtney's taking a much deserved break - having essentially all her meals served to her in bed. Who doesn't want that?!
Real world: All her meals are hospital food.
We keep saying to each other, "This doesn't seem real," and "this can't really be happening." I'm sure everyone confronted with a life threatening disease or trial has the same thoughts. But it's so much different when it's YOUR life. The one good thing about having a hard time believing that this is real, is that you don't feel the impact as badly. The disbelief somewhat lessons the shock and pain of it all.
Then there are the moments when "it's all too real." When you know with a certainty that you're dealing with cancer, and staying for weeks not days in a hospital, and getting chemicals pumped into your body. When you realize how bad it could be if not for wise doctors and a good hospital. When you know that the life you knew up until a couple weeks ago is moving along without you. When you feel the physical pain and weakness caused by the disease in your body. When you go days without seeing your own children. When you look forward to a drug induced sleep so you can escape the reality for a few precious hours and yearn to not wake up until it's all over.
Dream world: Courtney's taking a much deserved break - having essentially all her meals served to her in bed. Who doesn't want that?!
Real world: All her meals are hospital food.
Tuesday, October 2, 2007
Day 11
More good news today, although I’m not sure if I completely understand it. But who cares? It’s good news and that’s all that matters. Dr. Jordan indicated that he was pleased to see her %Blasts go down from 85% to 16% today. What I don’t understand is that I thought the % was of her total WBC’s. And if her WBC’s are below 1.0 (at one point they were over 100,000), does it really matter if it’s 85 or 16 percent blasts? When I know the answer, I’ll share it. Anyway, if the doctor’s happy, we’re happy…for the most part.
Courtney wrote her first email today asking a friend to come and cut her hair. No, she’s not shaving it. (She just thinks it will be less maintenance and less likely to be messy when it’s shorter.) Well she cried a little when she wrote the message. The fact that she wrote anything at all is a sure indication that she’s getting stronger each day – physically and emotionally. Please know how much we appreciate your kind words, thoughts and prayers! We give thanks to a loving Father in Heaven for having you in our lives.
It helps so much to know that we’re not alone in this. And it helps to know that we have a Comforter in Jesus Christ:
We truly believe He loves us all. We believe His love is often expressed through the kind words, deeds, and even hugs of those around us. So, we thank you all for helping us feel His love.
Courtney wrote her first email today asking a friend to come and cut her hair. No, she’s not shaving it. (She just thinks it will be less maintenance and less likely to be messy when it’s shorter.) Well she cried a little when she wrote the message. The fact that she wrote anything at all is a sure indication that she’s getting stronger each day – physically and emotionally. Please know how much we appreciate your kind words, thoughts and prayers! We give thanks to a loving Father in Heaven for having you in our lives.
It helps so much to know that we’re not alone in this. And it helps to know that we have a Comforter in Jesus Christ:
11 And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.
12 And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh
how to succor his people according to their infirmities.
We truly believe He loves us all. We believe His love is often expressed through the kind words, deeds, and even hugs of those around us. So, we thank you all for helping us feel His love.
Courtney's Angels - T-shirt
Here is the final design of Courtney's Angels T-shirt. Thank you, Amy Pennington, Amanda Holcomb, Brandi Bryner and Meredith Breinholt, for a great idea and for making it happen!! Click on the shirt to see how they did it and how to get one.
Monday, October 1, 2007
Day 10 - Final Diagnosis
Well we finally have the diagnosis we've been waiting for - Courtney has the M0 version of AML. What this means is that she has just three days left of Cytarabine and the Idarubicin is finished. It means that the doctors now have confidence that they're giving her the right treatment. It means that we have a clear and concise plan as to how to beat this thing. We've been firing out of all canons and now know that we can continue to do so confidently.
Unfortunately, this news didn't help Courtney's day to go much better. Though she's emotionally growing more stable by the day, evidenced by the fact that she was actually able to start reading the many wonderful messages that have been posted and sent to her, she's anxious about the side effects of the therapy. It didn't help that she had an hour long nose bleed. Tonight she fought to fall asleep saying multiple times that her skin was crawling. Who knows where that came from. It could be a side effect of one of the many medications she's on, or it's simply anxiety brought on by the diagnosis, the nose bleed, the upset stomach, the knowledge of chemicals being injected into her body, etc. I still can't imagine what she must be going through. She's sleeping now. She never snores, but is now. It's the first time in my life that snoring is music to my ears. It means she's in a deep sleep - exactly what she's needed.
Unfortunately, this news didn't help Courtney's day to go much better. Though she's emotionally growing more stable by the day, evidenced by the fact that she was actually able to start reading the many wonderful messages that have been posted and sent to her, she's anxious about the side effects of the therapy. It didn't help that she had an hour long nose bleed. Tonight she fought to fall asleep saying multiple times that her skin was crawling. Who knows where that came from. It could be a side effect of one of the many medications she's on, or it's simply anxiety brought on by the diagnosis, the nose bleed, the upset stomach, the knowledge of chemicals being injected into her body, etc. I still can't imagine what she must be going through. She's sleeping now. She never snores, but is now. It's the first time in my life that snoring is music to my ears. It means she's in a deep sleep - exactly what she's needed.
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