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| Grandpa and Lily |
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| The Generations |
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| Will and Puppy |
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| Family Photo |
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| Mama and Baby |
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| Gramme and Lily |
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| Lily in Christmas Outfit from Mom |
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| Lily in Welcome Outfit from Mom |
Thursday, December 30, 2010
Family Gathering Pictures
Last night, Allen, Will, Lily and I made the trek to Dale and Diane's house so that we could see Gramme and Grandpa before they flew out. It was wonderful to see them, and as a huge bonus they got to meet sweet little Lily. This gathering was just what the doctor ordered and I know Mom would have been so pleased with the laughter and good time that we had together. I just realized that Dale and Diane are not in any of the pictures. Rats! How did we manage that? LOL, I think Dale was taking most of these photos, so next time we'll have to make sure we get some pictures with him in view, too. Here are the pictures of all the fun:
Memorial Arrangements
Thank you so much for your outpouring of support over the past few days. It is so heartwarming for me to know how many lives my Mom impacted in such positive ways. It makes me feel like she is still wrapping her arms around me even though she can't physically be here with me.
Lots of people have inquired about funeral arrangements for my Mom. The family has decided that we would like to hold her service in Minnesota, where her closest friends, family members and students are. The pastor of her church and our family friend, Rev. Thomas, has expressed that she would love to host services at Camphor. We are looking at a service date for sometime in mid-February, to give the family time to plan and make travel arrangements. Once we nail down a date and time, I will post that information right away so that all of you can plan, too. If you want to have a part in the service, please send an email to OnEaglesWings927@hotmail.com . That is my private email address and you'll reach me directly so that we can plan together.
Mom has requested to be cremated and I will likely pick up her ashes tomorrow or Monday from the funeral home here in Concord, NC. We will scatter them at Hilton Head, SC sometime in April or so. That was her favorite beach and she has requested that her ashes be spread at the beach or in the mountains. I think Hilton Head would be her first choice.
Mom also wanted a marker to be placed in a cemetery somewhere, so we are looking at finding a place close to Concord, NC where we can place that, with the idea that my family and her grandchildren will be able to easily visit that place for many years to come. I will send more information on that once we decide on an actual place and time for setting that stone.
Lots of people have inquired about funeral arrangements for my Mom. The family has decided that we would like to hold her service in Minnesota, where her closest friends, family members and students are. The pastor of her church and our family friend, Rev. Thomas, has expressed that she would love to host services at Camphor. We are looking at a service date for sometime in mid-February, to give the family time to plan and make travel arrangements. Once we nail down a date and time, I will post that information right away so that all of you can plan, too. If you want to have a part in the service, please send an email to OnEaglesWings927@hotmail.com . That is my private email address and you'll reach me directly so that we can plan together.
Mom has requested to be cremated and I will likely pick up her ashes tomorrow or Monday from the funeral home here in Concord, NC. We will scatter them at Hilton Head, SC sometime in April or so. That was her favorite beach and she has requested that her ashes be spread at the beach or in the mountains. I think Hilton Head would be her first choice.
Mom also wanted a marker to be placed in a cemetery somewhere, so we are looking at finding a place close to Concord, NC where we can place that, with the idea that my family and her grandchildren will be able to easily visit that place for many years to come. I will send more information on that once we decide on an actual place and time for setting that stone.
Monday, December 27, 2010
Rest in Peace and Dance With Joy: It Was a Fun Ride
Around 12:20, my Grandparents called me to tell me that Mom died peacefully with them at her side. Lord, envelop my Mom with your loving arms and may her vibrant spirit dance in your presence. Thank you for lifting her pain and suffering.
Mom, it was a fun ride. We love you and thank you for all the wonderful years you shared with us. Your personality, spirit, energy, passion for life, intelligence, compassion for others and zest will never, ever be forgotten. I am comforted by the memories and rejoice in the life we shared. Thank you for giving birth to me...
Mom, it was a fun ride. We love you and thank you for all the wonderful years you shared with us. Your personality, spirit, energy, passion for life, intelligence, compassion for others and zest will never, ever be forgotten. I am comforted by the memories and rejoice in the life we shared. Thank you for giving birth to me...
Quick Note Before Bed
Just wanted to give everyone a quick update before bed. They moved Mom out of the ICU and back onto the floor for the remainder of her hospice care. Hopefully it will be more peaceful there for her. She has a nurse attending to her and I've been told that she's in kind of a sleepy state and that when they ask her if she is in pain, she can answer yes or no and is almost always answering "no." She's not really able to converse but seems from all appearances to be much more at peace.
We are hoping to make a short trip up there in the next couple of nights so that Mom and Gramme and Grandpa can meet Lily, etc. We won't get to stay overnight since Allen has to work all week. We'll just leave when he gets home from work and do a short trip up and back.
We are hoping to make a short trip up there in the next couple of nights so that Mom and Gramme and Grandpa can meet Lily, etc. We won't get to stay overnight since Allen has to work all week. We'll just leave when he gets home from work and do a short trip up and back.
Sunday, December 26, 2010
Lily's Birth Pictures
Here are the pictures from Lily's birth that I had hoped to share with my Mom. Maybe she will get a chance to see them if someone at the ICU has a computer and maybe she won't, but sharing them here is kind of like sharing them with her in a way...
Prayers Answered
Not too long ago, the ICU doctor called to talk with me. They finally found out what the nodules in Mom's peritoneal cavity are. They are plasma cell tumors (plasma cell tumors are from multiple myeloma), not ovarian cancer as originally thought. The cancer is very, very aggressive and would not be responsive to treatment. Mom's condition has worsened rapidly.
When the doctor called, she was sitting in the room with my mom and my grandparents and they had already discussed palliative care as the best choice for my Mom and they were just checking in with me to make sure that I was in agreement, which of course I was.
Mom wanted to talk with me and I got the opportunity to say goodbye to her before they start giving her all the good strong drugs that will bring her peace and keep her from feeling what is happening to her body. Goodbyes are never easy, but I am so grateful that I got to have one. I thanked her for giving me the best years of her life, told her I loved her, that we would be okay. I told her that even though we couldn't be there physically with her right now that we were with her in our thoughts and prayers and holding her close and that she was not alone. I told her that I knew the Lord was with her and that I believe I will see her again one day. I got to tell my Mom about Lily's birth and tell her what a sweet baby girl she is and that made her so happy. I told her that I knew she touched a lot of other lives through all her years of teaching and that I hoped she could feel content and happy about that -- all the ways she's made a difference for people. It was hard but wonderful, one of those moments when you know that you can't fit all the words in to summarize what needs to be said but when you know that the feelings behind the words convey it anyway.
The only hard thing for me is that she didn't get to see any pictures of Lily or of the birth. I sent one to her cell phone yesterday but I don't know if she got it. That makes me sad, but I can't hold up her comfort on my behalf for pictures. So, I just have to trust that she will be able to see us from heaven and that she knows it was beautiful. That is the only thing that feels unfinished from my end but I have to believe that if it doesn't feel unfinished on her end, all is well. The most important thing is that she get the relief she needs as quickly as possible.
I signed off with the doctor, who ensured me that they would deliver Mom in a nice comfortable natural death into the hands of the Lord. Two days ago, the Lord delivered my beautiful baby girl, Lily, safely into this world. I have to believe that those same loving hands will be there to receive my Mom peacefully on the other end. Lord God, open your hands to my Mom, give her peace and receive her with joy. May she dance with You and find comfort in Your presence. Thank you, Lord, for lending her to us for this lifetime and for touching us with her spirit. My life has been all the better for every minute of it.
When the doctor called, she was sitting in the room with my mom and my grandparents and they had already discussed palliative care as the best choice for my Mom and they were just checking in with me to make sure that I was in agreement, which of course I was.
Mom wanted to talk with me and I got the opportunity to say goodbye to her before they start giving her all the good strong drugs that will bring her peace and keep her from feeling what is happening to her body. Goodbyes are never easy, but I am so grateful that I got to have one. I thanked her for giving me the best years of her life, told her I loved her, that we would be okay. I told her that even though we couldn't be there physically with her right now that we were with her in our thoughts and prayers and holding her close and that she was not alone. I told her that I knew the Lord was with her and that I believe I will see her again one day. I got to tell my Mom about Lily's birth and tell her what a sweet baby girl she is and that made her so happy. I told her that I knew she touched a lot of other lives through all her years of teaching and that I hoped she could feel content and happy about that -- all the ways she's made a difference for people. It was hard but wonderful, one of those moments when you know that you can't fit all the words in to summarize what needs to be said but when you know that the feelings behind the words convey it anyway.
The only hard thing for me is that she didn't get to see any pictures of Lily or of the birth. I sent one to her cell phone yesterday but I don't know if she got it. That makes me sad, but I can't hold up her comfort on my behalf for pictures. So, I just have to trust that she will be able to see us from heaven and that she knows it was beautiful. That is the only thing that feels unfinished from my end but I have to believe that if it doesn't feel unfinished on her end, all is well. The most important thing is that she get the relief she needs as quickly as possible.
I signed off with the doctor, who ensured me that they would deliver Mom in a nice comfortable natural death into the hands of the Lord. Two days ago, the Lord delivered my beautiful baby girl, Lily, safely into this world. I have to believe that those same loving hands will be there to receive my Mom peacefully on the other end. Lord God, open your hands to my Mom, give her peace and receive her with joy. May she dance with You and find comfort in Your presence. Thank you, Lord, for lending her to us for this lifetime and for touching us with her spirit. My life has been all the better for every minute of it.
Red Tape
No hospice until tomorrow. Red tape with the wording on the health directive. They have to have a diagnosis to do hospice. Until then, they're obligated to treat her and extend her life. What a messed up system! Lord, please remove my Mom's suffering.
ICU
Mom is in ICU. Allen is trying to help with phone calls that I'm not able to make right now. Trying to see what it would take to get her into hospice. I'm praying, hanging on, trying to conserve energy, nurse our sweet baby. I don't feel like I'm thinking clearly right now: processing all this, sleep deprivation, recovery from childbirth. I feel like we're letting Mom down. The one thing she never wanted was suffering and pain and she's had more of it than one person should ever have to deal with. Lord, be with my Mom, bring her peace and guide our steps so she can get what she needs.
Saturday, December 25, 2010
Highs and Lows
There have been lots of highs and lows over the last day or so around here. First the high: Lillian Agnes Kinsey was born last night, on Christmas Eve, at 11:12pm. It was a beautiful home water birth and we couldn't have asked for a more amazing and blessed experience. She weighed in at 8lb7oz, 20 3/4 inches long, with a 14 inch head. She started nursing like a champ shortly after birth and has kept it up ever since. She is so sweet, such a relaxed personality and so much fun to be around. We thank God for her!
I'll give you the promised rundown of the birth story. For all of you birthy friends out there, I'll write a more detailed story later and send it to you privately. Otherwise, here's the bare bones. I got a high leak in my water on December 16th and we thought she was coming right away. Friends helped us get a birth pool and other needed items. Our doula came over and we thought things were getting going contraction wise but they fizzled out. This was the same day that Mom was admitted to Duke, so stress was running high and that probably had something to do with it. Anyway, the leak seemed to seal over and then for the next week, I would go into what seemed to be labor and then it would fizzle out. I worked hard at relaxing and resting. Allen really helped me out by babysitting my phone to keep distractions to a minimum. He was also off for the entire week of Christmas, which was helpful for support with Will and with all that has been going on with Mom.
Anyway, if you're wondering, yes there are certain hygienic measures you take when you've had a leak in your water. Don't need to get into them, but we were careful and decided to wait for labor to truly begin on its own. On December 23rd I started getting regular contractions that continued all day and through the night and into the 24th. I was able to get a few hours of rest here and there, so they didn't develop into a full-blown labor pattern. At 6:00 on the 24th, my labor really picked up with contractions two minutes apart, lasting a minute or more each. I wanted to pay attention to Will opening his Christmas gifts but just couldn't focus on anything but the contractions. Allen called the midwives and our doula and they arrived around 8:00. I hit transition somewhere around 10:00 and then after 20 minutes or so of pushing, Lillian was born at 11:12 p.m. in the birthing pool. My midwife passed her through my legs and I got to be the one to pull her out of the water for the first time. What a blessed experience!! :-D
I will update with pictures later on. I'm a little tired right now, but I promise to share as soon as I upload them to the computer.
Now for lows. Mom is having a really, really tough time. Please continue to keep her in your prayers. Her pain medication was affecting renal function, so yesterday they decided to pull her off of it. Her pain became overwhelming and she hit a major breaking point, where she panicked and wanted her life to end. Gramme and Grandpa were there for all of this and Marilyn was on the phone. I can't begin to imagine what that must have felt like. Duke was able to sedate her and work with her pain management to bring her to a place of peace again. Today, I spoke with her and she was pretty desperate but from what I understand she was better than yesterday. She was asking why she was alone, why she was still here, why I wasn't there, why Gramme and Grandpa weren't there, why nobody was doing anything for her, etc. They gave her some kind of medication when I was on the phone with her and all of a sudden the most important thing to her was repeating my phone number and having the nurse put it on the white board. She did that for about 10 minutes. I told her that Lily had been born and let her hear Lily sneeze in the phone, which she seemed to enjoy. I also told her what a calm and wonderful baby she is and that seemed to also help her feel peaceful. Marilyn spoke on the phone with her after I got off and she was having a rough time again but they came to ice her body and to give her some kind of sedative to help her get some rest and when Marilyn got off the phone with her she was dozing off.
We really need to get some answers about what is going on with her so that she can have some quality of life and peace. We are supposed to get those answers on Monday and things really need to get moving. Her current quality of life is unacceptable, horrible to witness and just unfair. The one thing she's always said is that she doesn't care what happens to her, she just doesn't want to feel pain. It breaks my heart that we can't make that happen for her right now. She didn't have the kind of Christmas I wanted for her today and I truly miss my Mom. Opening gifts from her was bittersweet as we know how she is as a person, vs what she is forced to endure right now.
So, there you have it...highs and lows. Our family is truly experiencing both ends of the spectrum right now. We rejoice in God's gift of new life in Lily and are so sad about what Mom is going through. We hope that Lily can bring hope and joy to family and friends and that we can somehow find some peace and answers for Mom.
I'll give you the promised rundown of the birth story. For all of you birthy friends out there, I'll write a more detailed story later and send it to you privately. Otherwise, here's the bare bones. I got a high leak in my water on December 16th and we thought she was coming right away. Friends helped us get a birth pool and other needed items. Our doula came over and we thought things were getting going contraction wise but they fizzled out. This was the same day that Mom was admitted to Duke, so stress was running high and that probably had something to do with it. Anyway, the leak seemed to seal over and then for the next week, I would go into what seemed to be labor and then it would fizzle out. I worked hard at relaxing and resting. Allen really helped me out by babysitting my phone to keep distractions to a minimum. He was also off for the entire week of Christmas, which was helpful for support with Will and with all that has been going on with Mom.
Anyway, if you're wondering, yes there are certain hygienic measures you take when you've had a leak in your water. Don't need to get into them, but we were careful and decided to wait for labor to truly begin on its own. On December 23rd I started getting regular contractions that continued all day and through the night and into the 24th. I was able to get a few hours of rest here and there, so they didn't develop into a full-blown labor pattern. At 6:00 on the 24th, my labor really picked up with contractions two minutes apart, lasting a minute or more each. I wanted to pay attention to Will opening his Christmas gifts but just couldn't focus on anything but the contractions. Allen called the midwives and our doula and they arrived around 8:00. I hit transition somewhere around 10:00 and then after 20 minutes or so of pushing, Lillian was born at 11:12 p.m. in the birthing pool. My midwife passed her through my legs and I got to be the one to pull her out of the water for the first time. What a blessed experience!! :-D
I will update with pictures later on. I'm a little tired right now, but I promise to share as soon as I upload them to the computer.
Now for lows. Mom is having a really, really tough time. Please continue to keep her in your prayers. Her pain medication was affecting renal function, so yesterday they decided to pull her off of it. Her pain became overwhelming and she hit a major breaking point, where she panicked and wanted her life to end. Gramme and Grandpa were there for all of this and Marilyn was on the phone. I can't begin to imagine what that must have felt like. Duke was able to sedate her and work with her pain management to bring her to a place of peace again. Today, I spoke with her and she was pretty desperate but from what I understand she was better than yesterday. She was asking why she was alone, why she was still here, why I wasn't there, why Gramme and Grandpa weren't there, why nobody was doing anything for her, etc. They gave her some kind of medication when I was on the phone with her and all of a sudden the most important thing to her was repeating my phone number and having the nurse put it on the white board. She did that for about 10 minutes. I told her that Lily had been born and let her hear Lily sneeze in the phone, which she seemed to enjoy. I also told her what a calm and wonderful baby she is and that seemed to also help her feel peaceful. Marilyn spoke on the phone with her after I got off and she was having a rough time again but they came to ice her body and to give her some kind of sedative to help her get some rest and when Marilyn got off the phone with her she was dozing off.
We really need to get some answers about what is going on with her so that she can have some quality of life and peace. We are supposed to get those answers on Monday and things really need to get moving. Her current quality of life is unacceptable, horrible to witness and just unfair. The one thing she's always said is that she doesn't care what happens to her, she just doesn't want to feel pain. It breaks my heart that we can't make that happen for her right now. She didn't have the kind of Christmas I wanted for her today and I truly miss my Mom. Opening gifts from her was bittersweet as we know how she is as a person, vs what she is forced to endure right now.
So, there you have it...highs and lows. Our family is truly experiencing both ends of the spectrum right now. We rejoice in God's gift of new life in Lily and are so sad about what Mom is going through. We hope that Lily can bring hope and joy to family and friends and that we can somehow find some peace and answers for Mom.
Friday, December 24, 2010
A Little Info
I've been detained with contractions, so Allen called Mom's doctor to ask some questions. He asked about how her involvement in the clinical trial for multiple myeloma would impact the treatment of her current condition. The doctor said that it has no impact on how they are treating her and there is even a clause in the contract that outlines that. He also said that they're actually not 100% sure what the masses in her peritoneal cavity are. They aren't sure that it is ovarian cancer as originally thought, but they also aren't sure that it isn't. A couple of days ago, the ob/gyn oncology doctors spoke with Mom and said they were organizing a team of people to meet with her and decide on the course of action from here on out. That plan makes more sense now that we know that they are really still trying to figure this stuff out.
I haven't spoken with Mom yet today but I did talk with her some yesterday. She was very, very loopy from the pain medications but her pain level seemed a little bit better, so I guess that is a good trade off. Thanks for the continued prayers, thoughts and support!
I haven't spoken with Mom yet today but I did talk with her some yesterday. She was very, very loopy from the pain medications but her pain level seemed a little bit better, so I guess that is a good trade off. Thanks for the continued prayers, thoughts and support!
Wednesday, December 22, 2010
Please Pray for Pain Relief
Please pray for Mom. She's in excruciating pain this morning. She called me at her wits end asking for help and we don't have test results yet so all they can do is give her more pain meds. She says it's quality of life issues. Please pray for her pain management, comfort, peace and some fast answers so we can change courses with her. I feel so helpless. Lord, help my Mom!
Tuesday, December 21, 2010
Still No News
I talked with Mom today and there's still no news on her lab results. The meds have her very loopy but she seems like maybe she isn't in so much pain. She was visiting with Gramme and Grandpa and cousin Dale when I called up there tonight. Hopefully we will have more info tomorrow...
Monday, December 20, 2010
Biopsy Day
Another quick update. They did Mom's biopsy today. We don't have the results yet, but we look forward to getting them (tomorrow maybe?) so that they can start to make her more comfortable. I talked with her this morning and her pain level was still extremely high, despite them continuing to increase her pain medications. I also spoke briefly with her this evening but she was extremely tired and the medicines made it hard to make a lot of sense out of what she was saying. Hopefully she can get some rest tonight.
Gramme and Grandpa were with her at the hospital today and said that her spirit was still very strong despite all that is going on with her. I was so happy to hear that.
For those wondering, yes I'm still pregnant. I don't want to get into the birth stuff right now because I'm in the midst of it. Suffice it to say that baby and I are both doing well and I will give you a birth story with more details after Lily is here.
Gramme and Grandpa were with her at the hospital today and said that her spirit was still very strong despite all that is going on with her. I was so happy to hear that.
For those wondering, yes I'm still pregnant. I don't want to get into the birth stuff right now because I'm in the midst of it. Suffice it to say that baby and I are both doing well and I will give you a birth story with more details after Lily is here.
Sunday, December 19, 2010
Quick Update
Very quick update for y'all: They've doubled Mom's IV pain meds and she sounded a bit more comfortable when I talked with her. She was having pain in her abdomen last night so they did an x-ray and apparently it showed that her pain was tied in with what's going on with the cancer.
Gramme and Grandpa arrived on a flight into Raleigh/Durham late last night and they were visiting with Mom and Eric when I called up there earlier. I'm so glad they made it down to see her!
Gramme and Grandpa arrived on a flight into Raleigh/Durham late last night and they were visiting with Mom and Eric when I called up there earlier. I'm so glad they made it down to see her!
Saturday, December 18, 2010
Please Pray for Peace
I have to keep this short because I have my own things I'm dealing with here -- I've been in and out of labor with Lily since Thursday.
Lots has happened the past few days. Mom is not doing well. Her tests show extensive spreading of the cancer.
Eric drove to town to be with Mom, all the way from Kansas. Gramme and Grandpa are looking at getting here soon.
Yesterday morning, Dale and Diane had Mom transported to Duke Hospital via ambulance due to pain. Since then, she's been going downhill. Oxygen levels are 88, hemoglobin is 8, creatinine is borderline, pain is high (even with IV pain meds). They're looking to do a blood transfusion on her.
I spoke with her a little bit ago and she was in misery. Please pray for her comfort and peace. It's not fair that she has to deal with this. I expressed my frustration to her that I can't be there right now due to being in labor but let her know that my family is holding her in prayer.
Please also pray that this baby will come soon so that I can go and be with my mother. It's so hard not to be able to hold her hand...
Lots has happened the past few days. Mom is not doing well. Her tests show extensive spreading of the cancer.
Eric drove to town to be with Mom, all the way from Kansas. Gramme and Grandpa are looking at getting here soon.
Yesterday morning, Dale and Diane had Mom transported to Duke Hospital via ambulance due to pain. Since then, she's been going downhill. Oxygen levels are 88, hemoglobin is 8, creatinine is borderline, pain is high (even with IV pain meds). They're looking to do a blood transfusion on her.
I spoke with her a little bit ago and she was in misery. Please pray for her comfort and peace. It's not fair that she has to deal with this. I expressed my frustration to her that I can't be there right now due to being in labor but let her know that my family is holding her in prayer.
Please also pray that this baby will come soon so that I can go and be with my mother. It's so hard not to be able to hold her hand...
Wednesday, December 15, 2010
Mom is at Dale's
This afternoon, Amanda came to pick up my Mom and take her to our cousin Dale's. We are so grateful for her generosity!! They got there safely and I've since heard that Amanda made it back okay, too.
Mom spoke with Duke today and found out that the test on Friday is a CT guided biopsy at 10:30. Remember that on Thursday she also has some tests -- 8:30 appointment for radiology injection, 10:30 scan and 3:00 ultrasound.
My uncle Eric is on his way, driving from Kansas and will be here to be with my Mom for some of those appointments. I'm looking forward to seeing him, too, when he passes through the Charlotte area on his way back to Kansas.
Today was a funny day. The morning was a whirlwind. It would have made a good sitcom episode. Will woke up with a fever, sick as can be. The water line to the washer was frozen. The printer broke down. Mom was trying to get ready and I was having some more of the pre-labor contractions I've been having for weeks. As of now, things have calmed down with Mom safely at Dale's, Will in bed with his fever finally down a bit, the water line thawed out and my contractions non-existent. Allen and I are about to have a late dinner and I'm looking forward to some relaxation. Whew! :-D
Mom spoke with Duke today and found out that the test on Friday is a CT guided biopsy at 10:30. Remember that on Thursday she also has some tests -- 8:30 appointment for radiology injection, 10:30 scan and 3:00 ultrasound.
My uncle Eric is on his way, driving from Kansas and will be here to be with my Mom for some of those appointments. I'm looking forward to seeing him, too, when he passes through the Charlotte area on his way back to Kansas.
Today was a funny day. The morning was a whirlwind. It would have made a good sitcom episode. Will woke up with a fever, sick as can be. The water line to the washer was frozen. The printer broke down. Mom was trying to get ready and I was having some more of the pre-labor contractions I've been having for weeks. As of now, things have calmed down with Mom safely at Dale's, Will in bed with his fever finally down a bit, the water line thawed out and my contractions non-existent. Allen and I are about to have a late dinner and I'm looking forward to some relaxation. Whew! :-D
Tuesday, December 14, 2010
Morphine is Working
I don't have time for a long update. I'm about to have dinner with my wonderful husband. :-)
I just wanted to let everyone know that the Morphine is now on top of Mom's pain and she is feeling a bit better. So glad for that!
Tomorrow, Amanda comes to take Mom to Dale's sometime between 1:30 and 2:00. She'll have the rest of her appointments on Thursday and Friday and then we'll know more about the course of action.
Thanks for all the support and prayers, y'all!
I just wanted to let everyone know that the Morphine is now on top of Mom's pain and she is feeling a bit better. So glad for that!
Tomorrow, Amanda comes to take Mom to Dale's sometime between 1:30 and 2:00. She'll have the rest of her appointments on Thursday and Friday and then we'll know more about the course of action.
Thanks for all the support and prayers, y'all!
Monday, December 13, 2010
Ovarian Cancer
Mom spoke with Duke today and was informed that they found CA-125 indicator of ovarian cancer on her CT scan with tracer. This means that they believe that she is dealing with ovarian cancer that has spread to her peritoneal cavity. Mom's pain level was high today, so Duke called in a double dose of her Morphine. She still wasn't comfortable after taking that, but I'm hoping that she'll be able to get on top of the pain tonight so that she can feel a little better. It may also be that she needs something stronger. We'll have to wait and see.
We were able to find someone to bring Mom to Dale's house on Wednesday afternoon so that she can go in to Duke on Thursday for her tests. Thank you Lord!
Mom's energy level is low and she needs a lot of sleep but she tries to fit in some enjoyment when she can. Last night, we went to the Christmas lights display at the Speedway and that was gorgeous and a lot of fun. Today, she hung out with Will and I for about an hour in the early afternoon.
Please continue to remain in prayer for Mom and for our family. This is some tough stuff and certainly not the news we were hoping for, though we know that God is with us and that we'll be given strength and wisdom along the way.
We were able to find someone to bring Mom to Dale's house on Wednesday afternoon so that she can go in to Duke on Thursday for her tests. Thank you Lord!
Mom's energy level is low and she needs a lot of sleep but she tries to fit in some enjoyment when she can. Last night, we went to the Christmas lights display at the Speedway and that was gorgeous and a lot of fun. Today, she hung out with Will and I for about an hour in the early afternoon.
Please continue to remain in prayer for Mom and for our family. This is some tough stuff and certainly not the news we were hoping for, though we know that God is with us and that we'll be given strength and wisdom along the way.
Sunday, December 12, 2010
Mom's Home Again
Mom got home safely around noon today. It's great to have her back! She had her CT scan with contrast done yesterday. All went well. They haven't interpreted the scan yet, though, and I don't suspect we'll know any more about that until sometime next week.
Big thanks to Dale and Diane for being so wonderful to Mom while she was there. She had such a wonderful time and felt so relaxed and at home.
Big thanks to Dale and Diane for being so wonderful to Mom while she was there. She had such a wonderful time and felt so relaxed and at home.
Friday, December 10, 2010
Plan of Investigation
Mom called me earlier this afternoon with an update from her appointment at Duke. She got there safely and will be staying with cousins Dale and Diane for a couple of nights before coming home on Sunday morning.
The good news is that all of Mom's multiple myeloma markers are absolutely fine. So, the nodules and fluid in her peritoneal cavity are not caused by multiple myeloma.
The not so good news is that we still don't have answers. They are looking for ovarian, pelvic or vaginal cancer. Mom is going for a CT scan with contrast tomorrow at noon at Duke Hospital. The CT done in California was done without contrast since there are risk factors with contrast material and multiple myeloma. However, at this point we just need answers and a clear picture of what is going on, so contrast material it is.
Thursday the 16th, Mom gets to Duke at 8:30 for an injection in preparation for some kind of scan at 10:30. She couldn't remember what kind of scan. In the afternoon, she has a vaginal and pelvic ultrasound at 3:00.
Friday the 17th, Mom meets with her multiple myeloma oncologist. She has blood work at 10:30 and her regular appointment at 11:30. Depending on what they find during the week, she may or may not have her maintenance treatment with Velcade following her appointment.
Please continue to keep my Mom in your prayers. It seems so unfair that she has to deal with this after all she went through with the multiple myeloma.
P.S. For those wondering, yes I'm still pregnant. :-) ...I will let you know when that changes.
The good news is that all of Mom's multiple myeloma markers are absolutely fine. So, the nodules and fluid in her peritoneal cavity are not caused by multiple myeloma.
The not so good news is that we still don't have answers. They are looking for ovarian, pelvic or vaginal cancer. Mom is going for a CT scan with contrast tomorrow at noon at Duke Hospital. The CT done in California was done without contrast since there are risk factors with contrast material and multiple myeloma. However, at this point we just need answers and a clear picture of what is going on, so contrast material it is.
Thursday the 16th, Mom gets to Duke at 8:30 for an injection in preparation for some kind of scan at 10:30. She couldn't remember what kind of scan. In the afternoon, she has a vaginal and pelvic ultrasound at 3:00.
Friday the 17th, Mom meets with her multiple myeloma oncologist. She has blood work at 10:30 and her regular appointment at 11:30. Depending on what they find during the week, she may or may not have her maintenance treatment with Velcade following her appointment.
Please continue to keep my Mom in your prayers. It seems so unfair that she has to deal with this after all she went through with the multiple myeloma.
P.S. For those wondering, yes I'm still pregnant. :-) ...I will let you know when that changes.
Saturday, December 4, 2010
Prayers for the Unknown
I haven't updated here in a long while. With me, that usually means that things are going well, and they were. Mom was going through her maintenance chemo routine and aside from minor chemo side effects all was well. I was busy with homeschooling, working and being pregnant (I'm 37 weeks along now).
I just got a phone call from Mom, who is with Marilyn in California. She's been there for the past 2 1/2 weeks visiting and is due to come home on Wednesday the 8th.
This morning, Marilyn took her to the emergency room at an excellent nearby hospital. Mom was having pain in her stomach, kind of in the middle. She's had a hard time eating much, too, and has some bloating.
The hospital did some tests, including a CT scan. What they saw were nodules in her peritoneal cavity. They don't know the nature of the nodules and Mom has decided to wait for further testing until she gets home and has her appointment at Duke on the 10th, less than a week from now.
Please pray for Mom and for answers regarding what is going on with her. Also, this baby could be born any day now, so pray for our family, as there is really a lot up in the air right now. Thanks so much for all your support!
I just got a phone call from Mom, who is with Marilyn in California. She's been there for the past 2 1/2 weeks visiting and is due to come home on Wednesday the 8th.
This morning, Marilyn took her to the emergency room at an excellent nearby hospital. Mom was having pain in her stomach, kind of in the middle. She's had a hard time eating much, too, and has some bloating.
The hospital did some tests, including a CT scan. What they saw were nodules in her peritoneal cavity. They don't know the nature of the nodules and Mom has decided to wait for further testing until she gets home and has her appointment at Duke on the 10th, less than a week from now.
Please pray for Mom and for answers regarding what is going on with her. Also, this baby could be born any day now, so pray for our family, as there is really a lot up in the air right now. Thanks so much for all your support!
Saturday, September 18, 2010
Busy Week!
I typed this whole post out and then Firefox crashed and I lost everything. Let's try this again.
This week has been so busy that I haven't had much chance to update. Here is a general rundown of the week:
Saturday the 11th: Mom and Marilyn return to Concord. Emily at Carmen!Carmen! in University trims up Mom's wigs and they look awesome. Mom, Marilyn, Allen, Will and I go out to dinner at a favorite Mexican spot.
Sunday the 12th: Will has his first swimming lesson and loves it. I teach violin and love it. We spend some time with Marilyn in the evening and then Allen takes her to her hotel near the airport.
Monday the 13th: Marilyn flies out. I teach the first preschool cooking class at my place which is awesome. The kids and moms are all so wonderful. What a great group! Will and I go to the library to get the homeschool books for the week and then do his homeschool lessons. The theme for the week is "birth and babies"
Tuesday the 14th: Will watches the movie "Babies" and is absolutely thrilled. I have a midwife appointment that goes just great. Baby and I are doing beautifully!
Wednesday the 15th: Mom drives to Tai Chi, the first time she's been allowed to drive in weeks. She does great with it and is recovering well from everything she's been through. Allen, Will and I meet at IKEA for our weekly lunch.
Thursday the 16th: We go for my ultrasound and find out we are having a beautiful, healthy baby girl. Yay! She is named Lillian Agnes Kinsey. Allen's grandmother was named Lillian and Agnes is a name that my great aunt and great grandmother both had. I spent the rest of the day on the phone with relatives and friends, posting on the computer about the news, etc.
Friday: Mom, Will and I make the trek to Duke. Mom's blood draw looked great, had a good meeting with the doc and she had her maintenance infusion of Velcade. Will and I had lunch while Mom was in the infusion area and then drove home when she was done. It turns out that we don't have to spend the weekend at Duke. Yay!
This has been one whirlwind of a week, but overall Mom is recovering beautifully. She was pretty tired at the beginning of the week but has been a bit more energetic as the week goes on. Her elbow was sore, but the doctor thinks it's just a vein thing that should get better with heat and time.
The past few days, I have been exhausted. Lily was so active on Wednesday and Thursday nights that I only got three or four hours of sleep. It was pretty hard to keep up my schedule without decent rest. The more pregnant I get, the more difficult the trip to Duke gets. Yesterday, I had all kinds of ligament pain, fatigue and general soreness. The lack of sleep combined with a massive belly growth spurt and having lots to do and it was a very difficult convergence. Last night, I looked in the mirror and could not believe how different my tummy looked from when I got up in the morning. It got huge!! Anyway, I felt like I needed to learn to walk again and then by last night I was beyond desperate for sleep. Thankfully, I was able to get almost eight hours of sleep last night and feel like a new woman today. My plan is to spend some time on the birth ball and go for a nice long walk to get used to the new way I have to move with this massive belly. LOL!
Tomorrow, we have Will's next swimming lesson and then I am meeting with my dear friend and doula, Patti, to talk about birthy stuff. This week is another busy one and then Friday we make the trek to Duke again for Mom's next Velcade dose. Don't be surprised if I don't update the blog until next weekend again. I'd like to do so sooner, but with homeschooling in full swing and things settled down on the medical front, I'm not home very much at all.
This week has been so busy that I haven't had much chance to update. Here is a general rundown of the week:
Saturday the 11th: Mom and Marilyn return to Concord. Emily at Carmen!Carmen! in University trims up Mom's wigs and they look awesome. Mom, Marilyn, Allen, Will and I go out to dinner at a favorite Mexican spot.
Sunday the 12th: Will has his first swimming lesson and loves it. I teach violin and love it. We spend some time with Marilyn in the evening and then Allen takes her to her hotel near the airport.
Monday the 13th: Marilyn flies out. I teach the first preschool cooking class at my place which is awesome. The kids and moms are all so wonderful. What a great group! Will and I go to the library to get the homeschool books for the week and then do his homeschool lessons. The theme for the week is "birth and babies"
Tuesday the 14th: Will watches the movie "Babies" and is absolutely thrilled. I have a midwife appointment that goes just great. Baby and I are doing beautifully!
Wednesday the 15th: Mom drives to Tai Chi, the first time she's been allowed to drive in weeks. She does great with it and is recovering well from everything she's been through. Allen, Will and I meet at IKEA for our weekly lunch.
Thursday the 16th: We go for my ultrasound and find out we are having a beautiful, healthy baby girl. Yay! She is named Lillian Agnes Kinsey. Allen's grandmother was named Lillian and Agnes is a name that my great aunt and great grandmother both had. I spent the rest of the day on the phone with relatives and friends, posting on the computer about the news, etc.
Friday: Mom, Will and I make the trek to Duke. Mom's blood draw looked great, had a good meeting with the doc and she had her maintenance infusion of Velcade. Will and I had lunch while Mom was in the infusion area and then drove home when she was done. It turns out that we don't have to spend the weekend at Duke. Yay!
This has been one whirlwind of a week, but overall Mom is recovering beautifully. She was pretty tired at the beginning of the week but has been a bit more energetic as the week goes on. Her elbow was sore, but the doctor thinks it's just a vein thing that should get better with heat and time.
The past few days, I have been exhausted. Lily was so active on Wednesday and Thursday nights that I only got three or four hours of sleep. It was pretty hard to keep up my schedule without decent rest. The more pregnant I get, the more difficult the trip to Duke gets. Yesterday, I had all kinds of ligament pain, fatigue and general soreness. The lack of sleep combined with a massive belly growth spurt and having lots to do and it was a very difficult convergence. Last night, I looked in the mirror and could not believe how different my tummy looked from when I got up in the morning. It got huge!! Anyway, I felt like I needed to learn to walk again and then by last night I was beyond desperate for sleep. Thankfully, I was able to get almost eight hours of sleep last night and feel like a new woman today. My plan is to spend some time on the birth ball and go for a nice long walk to get used to the new way I have to move with this massive belly. LOL!
Tomorrow, we have Will's next swimming lesson and then I am meeting with my dear friend and doula, Patti, to talk about birthy stuff. This week is another busy one and then Friday we make the trek to Duke again for Mom's next Velcade dose. Don't be surprised if I don't update the blog until next weekend again. I'd like to do so sooner, but with homeschooling in full swing and things settled down on the medical front, I'm not home very much at all.
Tuesday, September 7, 2010
WOOOHOOOOO!!!
Mom had apheresis at Duke today and they got more stem cells than they needed!!! This is a process that can take several days but they got all that they needed and more this very first day. They needed 8,000 but they got 15,000 in the first bag and that doesn't include what they got later in the second bag. Amazing!
This means that Mom is DONE with this whole stem cell collection business! DONE! Yahooo! It's been quite a ride but step-by-step everything has come together.
From this point on, Mom is just on maintenance chemo, to extend her remission as long as possible. The weekends of September 17th and 24th, we'll be at Duke while she gets Velcade. October and November involve chemo in pill-form that won't require much travel, other than for her monthly check-up at Duke. December, she'll have Velcade again, and so on. For December, we'll have to figure out logistics, since I'll be full-term with a baby and not traveling anymore.
In other news, Will had his very first day of homeschool preschool today and loved it. This week's theme is, "All About Me." We're practicing writing the letter "A," as well as reading books and watching cartoons about what makes different people special. Will is also going to be helping to take pictures of important things like the house, his room, family members, pets, favorite toys, and his favorite things to do, etc. The photos will be compiled into a book called, "All About Me." Today, we made a trip to the library to pick up the week's books and read a few books. We played at the Lego table there and then watched a couple of videos at home. Will was so excited that he had to show Allen everything when he got home. lol. I think this is going to be very good for Will!
Will's cold is getting better. Today, he mostly had a cough. I think he may be back to normal after a good night's sleep. I'm glad to see him back to his bubbly self and I am really looking forward to being able to go visit Amber and fam, as well as meet their new precious baby girl. I have been chomping at the bit!
It looks like Allen, Will and I will have a few days on our own before Mom comes back to town. She and Marilyn are going to have fun around Raleigh/Durham for a few days and head back home on Saturday, when Mom has an appointment with Emily to have her wigs trimmed. We'll have a couple of days to hang out and catch up with Marilyn before she flies out to CA on Monday.
This means that Mom is DONE with this whole stem cell collection business! DONE! Yahooo! It's been quite a ride but step-by-step everything has come together.
From this point on, Mom is just on maintenance chemo, to extend her remission as long as possible. The weekends of September 17th and 24th, we'll be at Duke while she gets Velcade. October and November involve chemo in pill-form that won't require much travel, other than for her monthly check-up at Duke. December, she'll have Velcade again, and so on. For December, we'll have to figure out logistics, since I'll be full-term with a baby and not traveling anymore.
In other news, Will had his very first day of homeschool preschool today and loved it. This week's theme is, "All About Me." We're practicing writing the letter "A," as well as reading books and watching cartoons about what makes different people special. Will is also going to be helping to take pictures of important things like the house, his room, family members, pets, favorite toys, and his favorite things to do, etc. The photos will be compiled into a book called, "All About Me." Today, we made a trip to the library to pick up the week's books and read a few books. We played at the Lego table there and then watched a couple of videos at home. Will was so excited that he had to show Allen everything when he got home. lol. I think this is going to be very good for Will!
Will's cold is getting better. Today, he mostly had a cough. I think he may be back to normal after a good night's sleep. I'm glad to see him back to his bubbly self and I am really looking forward to being able to go visit Amber and fam, as well as meet their new precious baby girl. I have been chomping at the bit!
It looks like Allen, Will and I will have a few days on our own before Mom comes back to town. She and Marilyn are going to have fun around Raleigh/Durham for a few days and head back home on Saturday, when Mom has an appointment with Emily to have her wigs trimmed. We'll have a couple of days to hang out and catch up with Marilyn before she flies out to CA on Monday.
Sunday, September 5, 2010
Marilyn is Here
Marilyn arrived this evening, a little after 6:00. I really wanted to pick her up myself but I was feeling really tired and didn't want to risk catching Will's cold by wearing myself down too much. He starts homeschool preschool on Tuesday and needs to get off to a good start. Allen wasn't feeling as tired, so he went to pick Marilyn up from the airport, about an hour drive from where we live.
Allen dropped Marilyn off at her hotel and helped her up with her things. Mom is actually staying in the same hotel, just for tonight. We dropped her off there earlier today. That way, she can get away from all the germs floating around the house. As expected, the two sisters were happy to see one another and filled with lots of good happy energy.
Will still has his cold today and tried to push himself really hard. He ended up skipping his nap and then being in bed by 6:00 tonight. We just went in to check on him and the little guy is sleeping hard as a rock. He's so cute!
Allen surprised me with dinner tonight: Chinese food from one of our favorite spots. He picked it up on his way home from dropping Marilyn off. We settled on the couch and watched a movie together. Nothing like a little together time on the long weekend. Love it!
Tomorrow, Mom has to be at the bone marrow transplant center for blood work at noon, so she and Marilyn will start the drive to Durham in the morning. Tuesday, Mom will start the apheresis process. Thankfully, she still seems to be healthy, so things should move along normally. I cannot believe that we are getting so close to having this part of the journey completed.
Allen dropped Marilyn off at her hotel and helped her up with her things. Mom is actually staying in the same hotel, just for tonight. We dropped her off there earlier today. That way, she can get away from all the germs floating around the house. As expected, the two sisters were happy to see one another and filled with lots of good happy energy.
Will still has his cold today and tried to push himself really hard. He ended up skipping his nap and then being in bed by 6:00 tonight. We just went in to check on him and the little guy is sleeping hard as a rock. He's so cute!
Allen surprised me with dinner tonight: Chinese food from one of our favorite spots. He picked it up on his way home from dropping Marilyn off. We settled on the couch and watched a movie together. Nothing like a little together time on the long weekend. Love it!
Tomorrow, Mom has to be at the bone marrow transplant center for blood work at noon, so she and Marilyn will start the drive to Durham in the morning. Tuesday, Mom will start the apheresis process. Thankfully, she still seems to be healthy, so things should move along normally. I cannot believe that we are getting so close to having this part of the journey completed.
Saturday, September 4, 2010
Squirt Gets a Cold NOW?
Yesterday evening, Allen and I noticed that Will had a runny nose and a little bit of a cough. By this morning, he was in coughing fits. We took him out to get some new pj's this morning and then stopped by the grocery store. Right now, he's taking a nap and we're really hoping that he'll feel better soon.
I told Mom that it wouldn't bother me if she wanted to stay in a hotel tonight instead of here, to get away from the germs. She'd rather stay here and is wearing a mask and limiting contact to try and reduce the chance of her getting sick. It's a little iffy since the hefty dose of chemo she had really reduces immunity and Mom isn't really supposed to be around sick people.
We are hoping that Mom will stay healthy because the next few days of this process depend on that. Marilyn is flying in tomorrow night and then Monday morning they are driving to Duke. Mom has to be healthy to go into the bone marrow transplant clinic and proceed with the apheresis, so pray that she stays that way!
In other news, my friend Amber had her baby last night. Welcome to the word little one!
I told Mom that it wouldn't bother me if she wanted to stay in a hotel tonight instead of here, to get away from the germs. She'd rather stay here and is wearing a mask and limiting contact to try and reduce the chance of her getting sick. It's a little iffy since the hefty dose of chemo she had really reduces immunity and Mom isn't really supposed to be around sick people.
We are hoping that Mom will stay healthy because the next few days of this process depend on that. Marilyn is flying in tomorrow night and then Monday morning they are driving to Duke. Mom has to be healthy to go into the bone marrow transplant clinic and proceed with the apheresis, so pray that she stays that way!
In other news, my friend Amber had her baby last night. Welcome to the word little one!
Friday, September 3, 2010
Yesterday and Today
Yesterday got so busy that I didn't get enough time to give you an update. Mom had her Neupogen again and had more of a reaction to it. She had lots of achiness in her upper body, a dizzy spell and a brief spell of anxiety. Today, her shots seemed to go just fine.
This morning we went for another round of blood work at NorthEast hospital. They were able to get what they needed but one side of the central line is acting fussy again. Mom says they were able to flush it out. While there, a man was playing the piano, so Will and I stopped to watch on the way to the bathroom and he absolutely loved it.
After the hospital, we had to stop by the credit union, grocery store (I just ran in for water.) and grab some lunch. We got home around 2:00, so it has been a busy day.
Big thanks to our friend Patti who brought dinner last night. It was amazingly delicious! She also hung out with Mom and Will for a couple of hours so Allen and I could go on a date. I was able to get a room at the Hilton for 70% off, so we spent a few hours over there. It was just what the doctor ordered. When we got home, we found Patti hard at work. She had mopped the floors, and she and Mom had worked on cleaning the light fixture above the kitchen table and washing the kitchen curtains. What a wonderful surprise! Will had a ball, too, and especially loves the alphabet animal book that Ms. Patti brought him. I think it's going to be a new staple in his bedtime routine. He's since been asking about seeing Ms. Patti and going to Ms. Patti's house to meet the goat and the dog. lol.
Allen, Will and I also got to have our weekly lunch at IKEA yesterday, which we weren't able to do last week or the week before due to lots of stuff going on. We were all glad to do that and Will was especially excited.
In other news, a local friend of mine is in labor today with her second baby. She called me early this morning. I am so excited to meet her new bundle of joy when she is born! If you could send positive thoughts and prayers to my friend Amber, that would be great. :-D
This morning we went for another round of blood work at NorthEast hospital. They were able to get what they needed but one side of the central line is acting fussy again. Mom says they were able to flush it out. While there, a man was playing the piano, so Will and I stopped to watch on the way to the bathroom and he absolutely loved it.
After the hospital, we had to stop by the credit union, grocery store (I just ran in for water.) and grab some lunch. We got home around 2:00, so it has been a busy day.
Big thanks to our friend Patti who brought dinner last night. It was amazingly delicious! She also hung out with Mom and Will for a couple of hours so Allen and I could go on a date. I was able to get a room at the Hilton for 70% off, so we spent a few hours over there. It was just what the doctor ordered. When we got home, we found Patti hard at work. She had mopped the floors, and she and Mom had worked on cleaning the light fixture above the kitchen table and washing the kitchen curtains. What a wonderful surprise! Will had a ball, too, and especially loves the alphabet animal book that Ms. Patti brought him. I think it's going to be a new staple in his bedtime routine. He's since been asking about seeing Ms. Patti and going to Ms. Patti's house to meet the goat and the dog. lol.
Allen, Will and I also got to have our weekly lunch at IKEA yesterday, which we weren't able to do last week or the week before due to lots of stuff going on. We were all glad to do that and Will was especially excited.
In other news, a local friend of mine is in labor today with her second baby. She called me early this morning. I am so excited to meet her new bundle of joy when she is born! If you could send positive thoughts and prayers to my friend Amber, that would be great. :-D
Wednesday, September 1, 2010
Hickman Issues Resolved, Neupogen Shots and Etc.
This morning, Mom, Will and I were out the door by 7am to go to the outpatient lab clinic at NorthEast hospital. They called down someone from the IV team again to draw Mom's blood from her Hickman. At first they were having problems again but the nurse had my Mom cough and lift her arm. Low and behold, problem solved! No clots in there or anything. My guess is that the outpatient lab doesn't see too many folk with central lines, so they didn't know how to handle it Monday. The nurse today was more experienced and had just the right trick to free things up.
Today I went to the lab prepared with lots of stuff for Will to do. He had food, drinks, crayons and paper, a toy car and his Elmo lunchbox. I was so happy to have a satisfied kiddo on my hands. We were all out of there around 9:00 and then went home to relax for an hour before I brought Will to the first week of his first music class.
Will hated his music class. Poor kiddo cried and cried and just could not get into it. I think it was too noisy, too much stimulation and too much of everyone doing the same exact thing at the same time. I'm glad to have an independent thinker on my hands and he just was not into it. We suffered through the hour, but won't be going back. Afterward, I treated Will to lunch at Moe's and let him stay up for a bit before going down for his quiet time. I think Will would do better with some kind of private music lesson or a less structured preschool music class. He loved the kids but not the teachers. He also enjoyed the free playtime before and after class. The little guy just doesn't like being a robot. I can't say I blame him. LOL!
Mom is doing well with the Neupogen shots so far. She took the first shots yesterday and has already had her second set of shots for today. So far, I think the only real complaint was some itchiness and soreness last night,but nothing too major. I know it stings a bit after the injection, but that's the case with a lot of medications. I am so happy that Mom hasn't had anything too major with that stuff so far and I hope that it stays that way. It is nice to think that about week from now, she could be done with apheresis and we could be putting all of this behind us and just enjoying life.
Today I went to the lab prepared with lots of stuff for Will to do. He had food, drinks, crayons and paper, a toy car and his Elmo lunchbox. I was so happy to have a satisfied kiddo on my hands. We were all out of there around 9:00 and then went home to relax for an hour before I brought Will to the first week of his first music class.
Will hated his music class. Poor kiddo cried and cried and just could not get into it. I think it was too noisy, too much stimulation and too much of everyone doing the same exact thing at the same time. I'm glad to have an independent thinker on my hands and he just was not into it. We suffered through the hour, but won't be going back. Afterward, I treated Will to lunch at Moe's and let him stay up for a bit before going down for his quiet time. I think Will would do better with some kind of private music lesson or a less structured preschool music class. He loved the kids but not the teachers. He also enjoyed the free playtime before and after class. The little guy just doesn't like being a robot. I can't say I blame him. LOL!
Mom is doing well with the Neupogen shots so far. She took the first shots yesterday and has already had her second set of shots for today. So far, I think the only real complaint was some itchiness and soreness last night,but nothing too major. I know it stings a bit after the injection, but that's the case with a lot of medications. I am so happy that Mom hasn't had anything too major with that stuff so far and I hope that it stays that way. It is nice to think that about week from now, she could be done with apheresis and we could be putting all of this behind us and just enjoying life.
Tuesday, August 31, 2010
R & R
Last night, Manisha and family treated us to pizza for dinner. It was *so* nice not to have to think about preparing food and to just be able to relax and enjoy the fam a little. Because I wasn't in the kitchen, that meant that Will got to bed early and we had more time for other things.
Mom gave herself her haircut last night, a buzz cut so that she doesn't have to deal with her hair falling out in clumps. Apparently, it's also painful for some people, so she can avoid that, too. It was kind of neat. She set up a table on the deck and used a jar to hold a mirror. I went out there to be her eyes and tell her what I saw on the back of her head. Mom says that she sees why guys wear their hair that way because it is so cool and comfortable. Apparently the damp rag after the haircut felt pretty darn good. Mom has a variety of head wraps, one wig and a second one on the way. She put on a head wrap last night and it looked super cute. Emily Allen, our friend and very talented stylist (Carmen! Carmen! Salon) is going to help her trim up her wigs so that they are just right for her.
After Mom's haircut, Allen and I got to watch the season finale of Drop Dead Diva. It came on Sunday night but we were too tired from the day to watch it. It was a two hour special and probably one of the best season finales I've ever seen, though I can't believe we have to wait several months to find out what happens. LOL!
This morning, I've been lazy. I woke up around 7:45 and just fired up the laptop and tried to catch up on a few emails (I'm soooo behind!). I think I am declaring this my pj's day unless anything unexpected happens. I hear Squirt talking to his stuffed animals and laughing in his room, so I'll just take a quick shower, throw on some pj's and spend the morning in front of the tv with him. Seems like a good time to kick back. :-)
Mom starts her Neupogen shots today. This is the medication that prepares her for having her stem cells filtered out during apheresis next week. The medication can make her feel like she has the flu and make it difficult to sleep, but we won't know how it affects her until she takes her first dose. So far, Mom hasn't had awful side effects from medications, so perhaps she will luck out with this one, too.
Mom gave herself her haircut last night, a buzz cut so that she doesn't have to deal with her hair falling out in clumps. Apparently, it's also painful for some people, so she can avoid that, too. It was kind of neat. She set up a table on the deck and used a jar to hold a mirror. I went out there to be her eyes and tell her what I saw on the back of her head. Mom says that she sees why guys wear their hair that way because it is so cool and comfortable. Apparently the damp rag after the haircut felt pretty darn good. Mom has a variety of head wraps, one wig and a second one on the way. She put on a head wrap last night and it looked super cute. Emily Allen, our friend and very talented stylist (Carmen! Carmen! Salon) is going to help her trim up her wigs so that they are just right for her.
After Mom's haircut, Allen and I got to watch the season finale of Drop Dead Diva. It came on Sunday night but we were too tired from the day to watch it. It was a two hour special and probably one of the best season finales I've ever seen, though I can't believe we have to wait several months to find out what happens. LOL!
This morning, I've been lazy. I woke up around 7:45 and just fired up the laptop and tried to catch up on a few emails (I'm soooo behind!). I think I am declaring this my pj's day unless anything unexpected happens. I hear Squirt talking to his stuffed animals and laughing in his room, so I'll just take a quick shower, throw on some pj's and spend the morning in front of the tv with him. Seems like a good time to kick back. :-)
Mom starts her Neupogen shots today. This is the medication that prepares her for having her stem cells filtered out during apheresis next week. The medication can make her feel like she has the flu and make it difficult to sleep, but we won't know how it affects her until she takes her first dose. So far, Mom hasn't had awful side effects from medications, so perhaps she will luck out with this one, too.
Monday, August 30, 2010
Adventures in Blood Work
This morning, Mom, Will and I headed over to NorthEast hospital for Mom to get her blood work done. At first, they wanted to take the blood from her arm, but Mom wanted them to take it from her central line (Hickman) instead, in order to reduce chance of infection. They called someone from the IV team to come down to the lab to help. They were able to get the lab work, but part of her Hickman is clogged with a blood clot. NorthEast placed a call over to Duke to find out what to do and we waited, and waited and waited.
We thought this was going to be a short visit, so were totally unprepared. Mom left her notebook at home. I didn't bring the diaper bag, Will's toys or his little potty chair. His sippy cup was in the car. He was thirsty, hungry and didn't know what to do with his energy.
Finally, we all ended up going to the cafeteria to grab a bite while we waited for Duke to call back. That was great because he finally got a giant bottle of water and some food. He could be a little noisy, run around a bit or climb up and down off the chairs at the table.
Eventually, we headed back to the lab only to find out they still hadn't found out anything. We hadn't heard anything on my cell either. Mom got out her phonebook and made a call to the nurse in charge of her case in the clinical trial. The nurse called another nurse over at the bone marrow transplant center, who called us back on my phone. She said to go home and then to see if it's still clogged on Wednesday. If it is, the clog will be addressed on that day instead of today. I hope that all works out because Will is set to start the very first day of his music class that day at 11:30. Sounds like we'll have to start out early in the morning to make sure. So anyway, after four hours of waiting around, we finally got to go home.
I'm going to grab a nap until Allen gets home. Our sweet friend Manisha is getting dinner for us tonight (thank you!) so we won't have to think about that tonight and that will make life easier. I look forward to putting my feet up a little. :-)
We thought this was going to be a short visit, so were totally unprepared. Mom left her notebook at home. I didn't bring the diaper bag, Will's toys or his little potty chair. His sippy cup was in the car. He was thirsty, hungry and didn't know what to do with his energy.
Finally, we all ended up going to the cafeteria to grab a bite while we waited for Duke to call back. That was great because he finally got a giant bottle of water and some food. He could be a little noisy, run around a bit or climb up and down off the chairs at the table.
Eventually, we headed back to the lab only to find out they still hadn't found out anything. We hadn't heard anything on my cell either. Mom got out her phonebook and made a call to the nurse in charge of her case in the clinical trial. The nurse called another nurse over at the bone marrow transplant center, who called us back on my phone. She said to go home and then to see if it's still clogged on Wednesday. If it is, the clog will be addressed on that day instead of today. I hope that all works out because Will is set to start the very first day of his music class that day at 11:30. Sounds like we'll have to start out early in the morning to make sure. So anyway, after four hours of waiting around, we finally got to go home.
I'm going to grab a nap until Allen gets home. Our sweet friend Manisha is getting dinner for us tonight (thank you!) so we won't have to think about that tonight and that will make life easier. I look forward to putting my feet up a little. :-)
Sunday, August 29, 2010
Mom is Home
Allen, Will and I left this morning around 9:00 Eastern, stopped to gas up, picked up a couple things from Food Lion, grabbed some breakfast and hit the road. It was nearly 11:30 when we got to the Duke bone marrow transplant clinic. Dale came out to the parking deck so that we could unload Mom's belongings from his car to ours. Mom was still waiting to get blood drawn, so we went to entertain Will for a few hours. He is not allowed in the bone marrow transplant clinic.
Everyone raved about the Duke gardens, so we set out to find them. We found a school building with Internet access, so fired up my laptop and got directions. Google sent us to the Duke police department. Go figure! We found a parking lot that we thought was at the gardens but it wasn't. A nice man there gave us good directions for getting there. We parked the car, grabbed a map and set out walking. It was really hot and sunny with not much shade and no breeze at all, so we figured we'd find the "cafe" and get Will an ice cream or something. Nothing was labeled and the map was poorly designed, so it took forever to find the place and when we got there it was insanely over priced, so we grabbed Squirt a juice box and tried to find our way back to the car. We were all overheated and miserable by this point and because of the unclear map, we ended up on the opposite side of the gardens and couldn't find the car. It took forever to find our way back to the car and by then I felt like I was going to throw up. Being pregnant and lost in the heat is not a good mix. We've decided never to go back there again. LOL! After that, we grabbed some lunch and then waited in the parking deck at the clinic until Mom called to say she was ready to go.
Dale and Mom came out of the clinic around 3:00 and we were on our way. Mom looks good: tired but surprisingly well for all she has bee through the past few days. She told me that Indra got back to the hotel room late last night and that she flew out this morning to go back to Kansas City to get medical care where Eric is. She was still in a lot of pain and doesn't have any answers yet, but it makes a lot of sense for her to receive care where Eric is and to be able to stay at home. I assume that she made it home okay and I'm sure we'll be in phone communication.
We made a few stops on the way home, including a stop to get some more cleaning supplies for the house. I have disinfecting wipes and other things for the bathroom to keep it sanitary for Mom. Will is going to be using the master bath for the next few weeks until Mom is over this hump in her treatment.
I think it was about 6:00 when we got home. We are all extremely tired and looking forward to a good night's sleep. I believe that tomorrow we start the every-other-day trips to the doc for blood work. Mom starts her neupogen shots on Tuesday. Side effects will make her feel like she has the flu and make it hard to sleep. She'll continue those and then Marilyn flies in on Sunday (a week from today). They'll go to Duke on that Monday to start stem cell collection.
Off to get my kid tucked into bed. He's pooped and going down insanely early tonight. What a good sport!
Everyone raved about the Duke gardens, so we set out to find them. We found a school building with Internet access, so fired up my laptop and got directions. Google sent us to the Duke police department. Go figure! We found a parking lot that we thought was at the gardens but it wasn't. A nice man there gave us good directions for getting there. We parked the car, grabbed a map and set out walking. It was really hot and sunny with not much shade and no breeze at all, so we figured we'd find the "cafe" and get Will an ice cream or something. Nothing was labeled and the map was poorly designed, so it took forever to find the place and when we got there it was insanely over priced, so we grabbed Squirt a juice box and tried to find our way back to the car. We were all overheated and miserable by this point and because of the unclear map, we ended up on the opposite side of the gardens and couldn't find the car. It took forever to find our way back to the car and by then I felt like I was going to throw up. Being pregnant and lost in the heat is not a good mix. We've decided never to go back there again. LOL! After that, we grabbed some lunch and then waited in the parking deck at the clinic until Mom called to say she was ready to go.
Dale and Mom came out of the clinic around 3:00 and we were on our way. Mom looks good: tired but surprisingly well for all she has bee through the past few days. She told me that Indra got back to the hotel room late last night and that she flew out this morning to go back to Kansas City to get medical care where Eric is. She was still in a lot of pain and doesn't have any answers yet, but it makes a lot of sense for her to receive care where Eric is and to be able to stay at home. I assume that she made it home okay and I'm sure we'll be in phone communication.
We made a few stops on the way home, including a stop to get some more cleaning supplies for the house. I have disinfecting wipes and other things for the bathroom to keep it sanitary for Mom. Will is going to be using the master bath for the next few weeks until Mom is over this hump in her treatment.
I think it was about 6:00 when we got home. We are all extremely tired and looking forward to a good night's sleep. I believe that tomorrow we start the every-other-day trips to the doc for blood work. Mom starts her neupogen shots on Tuesday. Side effects will make her feel like she has the flu and make it hard to sleep. She'll continue those and then Marilyn flies in on Sunday (a week from today). They'll go to Duke on that Monday to start stem cell collection.
Off to get my kid tucked into bed. He's pooped and going down insanely early tonight. What a good sport!
Off to Pick Up Mom...
In a few minutes, Allen, Will and I are leaving for our trip to pick up Mom from Duke. No new info on Indra yet but I'll keep you posted as we know more. I probably won't get online until sometime this evening after we're back at the house.
Saturday, August 28, 2010
More Info
I talked with Marilyn when she got off the phone with Eric and found out that Duke did x-rays on Indra and didn't find anything. She rated her pain as a 10 out of 10 and they have her on some good pain meds now. They're going to be running more tests until they get to the bottom of what is going on. If I hear more, I will update here. It may be morning before any of us know much more.
Mom said that the greeter from the bone marrow transplant center had been there when everything went down with Indra and that he went to see her at the hospital after he got off of work. I thought it was wonderful that he could do that. It frustrates me that nobody (family-wise) is able to be there with Indra right now, so knowing that someone cared enough to go and check on her is really wonderful.
Allen, Will and I will leave tomorrow morning to pick up Mom from Duke. Dale is going to load the luggage from the hotel room into his car and then we'll meet them at the bone marrow transplant center. Mom's appointment is at 10:30 tomorrow. We may try to be there at 11:00 or so. We can also get Indra's luggage to her at that time and stop by to see how she is doing.
Tonight, Allen and I have been sterilizing the bathroom in preparation for Mom's return. Allen changed the bunny litter in her room. All that's left is sterilizing the kitchen and Allen says he can just do that in the morning.
Praying for answers about what is going on with Indra. Hopefully we will know more soon...
Mom said that the greeter from the bone marrow transplant center had been there when everything went down with Indra and that he went to see her at the hospital after he got off of work. I thought it was wonderful that he could do that. It frustrates me that nobody (family-wise) is able to be there with Indra right now, so knowing that someone cared enough to go and check on her is really wonderful.
Allen, Will and I will leave tomorrow morning to pick up Mom from Duke. Dale is going to load the luggage from the hotel room into his car and then we'll meet them at the bone marrow transplant center. Mom's appointment is at 10:30 tomorrow. We may try to be there at 11:00 or so. We can also get Indra's luggage to her at that time and stop by to see how she is doing.
Tonight, Allen and I have been sterilizing the bathroom in preparation for Mom's return. Allen changed the bunny litter in her room. All that's left is sterilizing the kitchen and Allen says he can just do that in the morning.
Praying for answers about what is going on with Indra. Hopefully we will know more soon...
Another Update
So, not even five minutes after my last post, here I am blogging again. lol. Just when I was saying that we hadn't heard anything more from Eric, he called to let me know that he got in touch with Indra in the ER. She finally has a room and the doctor is going to start her on some pain medication right away and then investigate to figure out what is going on with her. He'll call me when he knows more. Of course, I'll pass any info on to you as soon as I hear...
Small Update
I still don't know what is going on with Indra, but I do know that when I talked with Eric she wasn't in a room in the ER yet. It has to be good news on some level that she's conscious and not in such bad shape that they had to admit her right away. We are still waiting to hear that she's been seen and to find out what is going on with her. Hopefully they will be able to find the source of her pain and help her to feel better.
Dale arrived to be with Mom shortly after my last post. He took her to CVS to get her medicine and a hair clipper so that she can shave her head before her white cells drop and she's not allowed to (risk of infection). She prefers that to losing it in clumps a couple of weeks from now.
I'll post more as soon as I hear more about Indra...
Dale arrived to be with Mom shortly after my last post. He took her to CVS to get her medicine and a hair clipper so that she can shave her head before her white cells drop and she's not allowed to (risk of infection). She prefers that to losing it in clumps a couple of weeks from now.
I'll post more as soon as I hear more about Indra...
Prayers for Indra
This afternoon, while Mom and Indra were at the bone marrow transplant center, Indra collapsed with pain in her abdomen. She was taken to Duke's emergency room by ambulance. I don't know anything more about what is going on with her. The transplant center won't let Mom leave without a caregiver, so she is not with Indra right now. Mom was able to get into contact with her cousin Dale who is packing a bag and heading over to the bone marrow transplant center to be her caregiver. Mom was also able to get in touch with Eric and Marilyn, so key people know what is going on. I'm not yet sure whether/when Eric may be flying or driving in to see about Indra. I was late getting Mom's phone call because Allen, Will and I were in a noisy mall buying Will some new shoes (which he loves--they light up!). I got her call maybe an hour later when I was sitting in the PetSmart parking lot while Allen was in buying rabbit litter. I will update the blog more once I have additional info. Please keep Indra in your prayers, as well as the doctors who are trying to figure out what is going on.
Quick Post
I'm on my way out the door to my hair appointment and thought I'd just type out a quick post. Talked with Mom this morning and she's doing well. She didn't throw up last night. The steroids had her hyped up so that she didn't sleep much, but she spent her time shopping online and reading up on the news and such. She seems to be very high energy today. Mom and Indra are headed to Mom's blood draw appointment and then should have the rest of the day to kick back. More later...
Friday, August 27, 2010
Chemo Completed
I talked with Mom not too long ago and she is nicely settled in her hotel room again with Indra. The rest of her Cytoxan infusion went well and she's feeling quite tired, but no nausea as of yet. Hopefully it will stay that way, but we will know more sometime late tonight, probably between 10pm and 2am sometime. It also turns out that they did give her a bit of steroid with the infusion, so it wasn't without the steroid buffer as we'd thought it would be. Apparently some dexamethasone went into her drip, along with the anti-nausea and anti-anxiety meds. That's a very good thing and hopefully the steroids will help to keep some of the side effects at bay.
While I was talking with Mom, Indra walked up to the grocery store (a block away) to get some things and then across the street to CVS to pick up the rest of the prescriptions. Mom says she has been so very wonderful, helpful and energetic. The bone marrow transplant clinic has a caregiver room, so Indra was able to spend some time in there for a break now and then. Apparently they have computers, televisions and things to eat and drink. Indra got back to the hotel right around the time I was signing off with Mom.
Tomorrow morning, Mom and Indra will head over to the bone marrow transplant clinic so that Mom can get her blood drawn. That appointment is at 10:30 and then they should be able to go back to the hotel room and rest for the remainder of the day.
I'll update more tomorrow, but probaly in the afternoon. In the morning, I get to have my hair cut and Will and Allen are going to a workshop at Lowe's to build a cute little school bus chalk holder. In the early afternoon, we'll be taking Squirt to get some new shoes. Lucky kiddo!
While I was talking with Mom, Indra walked up to the grocery store (a block away) to get some things and then across the street to CVS to pick up the rest of the prescriptions. Mom says she has been so very wonderful, helpful and energetic. The bone marrow transplant clinic has a caregiver room, so Indra was able to spend some time in there for a break now and then. Apparently they have computers, televisions and things to eat and drink. Indra got back to the hotel right around the time I was signing off with Mom.
Tomorrow morning, Mom and Indra will head over to the bone marrow transplant clinic so that Mom can get her blood drawn. That appointment is at 10:30 and then they should be able to go back to the hotel room and rest for the remainder of the day.
I'll update more tomorrow, but probaly in the afternoon. In the morning, I get to have my hair cut and Will and Allen are going to a workshop at Lowe's to build a cute little school bus chalk holder. In the early afternoon, we'll be taking Squirt to get some new shoes. Lucky kiddo!
In the Midst of Chemo
I talked with Mom a little over an hour ago and all is going well so far. She was a bit tired and out of it from the anti-nausea and anti-anxiety meds they are giving her, but seemed to be relaxed and doing well. She is still on the Cytoxan drip in her IV and should finish up with that sometime around 4:00 Eastern. The Cytoxan will also likely make her feel quite tired. She's never been on chemo without a steroid buffer before, so that will be new. So far, no nausea to speak of. Mom had some snacks and while I was on the phone with her, Indra brought her a grilled cheese sandwich. I'll be calling Mom to find out how she's doing and settling into her hotel room sometime between 5:00 and 5:30 Eastern. Since most people feel the brunt of their side effects 6 to 10 hours following treatment, I suspect we'll have a good idea how she's reacting to the Cytoxan sometime very late tonight.
On a funny note, Will must miss his Grandmama today because he walked into the kitchen, went to her empty spot at the table and said "Oh hi Will!," pretending that she was sitting right there. I thought it was so cute. Little kids have the best imaginations.
On a funny note, Will must miss his Grandmama today because he walked into the kitchen, went to her empty spot at the table and said "Oh hi Will!," pretending that she was sitting right there. I thought it was so cute. Little kids have the best imaginations.
Thursday, August 26, 2010
Hickman Port Day
Today, Mom had her Hickman port installed. Everything went well with that this morning and they did it under sedation, not general anesthesia. That sure makes things easier. Indra was with Mom the whole time. Following the procedure, they went to the bone marrow transplant center to meet with the doctor, then to the pharmacy before going back to the hotel. Shuttles made transportation relatively easy, which is great. After they got back to the hotel, the home health nurse came to hook Mom up to her IV. It's extremely important for her to remain fully hydrated while on the Cytoxan.
The doctor is having Mom follow a neutropenic diet, where she can't have fresh veggies or fruits. That will be a challenge for this vegetarian once Mom gets home, but it shouldn't be too much trouble to get that figured out. It sounds like proteins and carbohydrates are good bets. Canned goods are okay, if we wash the can thoroughly before opening and then heat everything up really well.
In other news, today Mom was informed that after Wednesday she can't be in contact with Will. I sure wish they would have told us this earlier, as this is kind of a tough concept for an almost three year old. She is his favorite person in the whole entire world. Until Wednesday, if he has contact with her he can't have a cold and he has to wash his hands, etc. Anyway, once he can't have contact with Mom I'm not entirely sure what to do. I picked Marilyn's brain for ideas earlier today and she thinks maybe Mom wearing long sleeves and pants, along with gloves would be the smartest thing. I think that's a great idea. We'll have to experiment once Mom gets home. My greatest concern is that Will doesn't feel like it's his fault that he can't have contact with her, that Grandmama is upset with him or like he did something wrong. I'm going to begin working with him on the concept of not touching and finding other ways to communicate for a little bit until Mom's white blood cell count comes back up (it'll drop 5 to 7 days following her chemo dose and then take a few weeks to come back up). Whew, heavy stuff for such a little guy but he is a smart cookie, so we'll see.
Mom's infusion appointment is set for 8:30 tomorrow morning. The infusion will take four hours. From what I've read, the bulk of people feel the onset of side effects between 6 and 10 hours following infusion. So, we'll be looking at having a good read on Mom's reaction to Cytoxan sometime late tomorrow evening. Duke will be including anti-nausea medications in Mom's IV and they've also prescribed two different pills she can take at the hotel, if she needs to. It looks like she'll lose her hair about two weeks following treatment. Mom already has one very nice wig and she ordered another today.
We are praying for a good reaction to the medication tomorrow, without too much nausea. Thanks for all your thoughts, prayers and support. It means a lot!
The doctor is having Mom follow a neutropenic diet, where she can't have fresh veggies or fruits. That will be a challenge for this vegetarian once Mom gets home, but it shouldn't be too much trouble to get that figured out. It sounds like proteins and carbohydrates are good bets. Canned goods are okay, if we wash the can thoroughly before opening and then heat everything up really well.
In other news, today Mom was informed that after Wednesday she can't be in contact with Will. I sure wish they would have told us this earlier, as this is kind of a tough concept for an almost three year old. She is his favorite person in the whole entire world. Until Wednesday, if he has contact with her he can't have a cold and he has to wash his hands, etc. Anyway, once he can't have contact with Mom I'm not entirely sure what to do. I picked Marilyn's brain for ideas earlier today and she thinks maybe Mom wearing long sleeves and pants, along with gloves would be the smartest thing. I think that's a great idea. We'll have to experiment once Mom gets home. My greatest concern is that Will doesn't feel like it's his fault that he can't have contact with her, that Grandmama is upset with him or like he did something wrong. I'm going to begin working with him on the concept of not touching and finding other ways to communicate for a little bit until Mom's white blood cell count comes back up (it'll drop 5 to 7 days following her chemo dose and then take a few weeks to come back up). Whew, heavy stuff for such a little guy but he is a smart cookie, so we'll see.
Mom's infusion appointment is set for 8:30 tomorrow morning. The infusion will take four hours. From what I've read, the bulk of people feel the onset of side effects between 6 and 10 hours following infusion. So, we'll be looking at having a good read on Mom's reaction to Cytoxan sometime late tomorrow evening. Duke will be including anti-nausea medications in Mom's IV and they've also prescribed two different pills she can take at the hotel, if she needs to. It looks like she'll lose her hair about two weeks following treatment. Mom already has one very nice wig and she ordered another today.
We are praying for a good reaction to the medication tomorrow, without too much nausea. Thanks for all your thoughts, prayers and support. It means a lot!
Wednesday, August 25, 2010
Arrival in Durham
Thank you all for all of your emails the past day or so. It is great to know that we have all of your support and prayers!
Mom is now staying in Durham, at her hotel. We picked up Indra and they are settled in nicely. Mom had her pulmonary function tests done and all seems well with those. Will and I made it back home safely.
Tomorrow morning, Mom and Indra will go to Duke Hospital via taxi so that Mom can get her Hickman line placed. Everything I've read indicates that they most often do this by giving general anesthesia, but occasionally they use sedation. I am not sure which Mom will have but I will update the blog tomorrow after I know the line has been successfully placed. After placement, Mom will meet with her doctor at the bone marrow transplant center and then go back to the hotel room, where the home health nurse will get her started on an IV in preparation for Friday's high dose chemo treatment.
Off to bed.... :-)
Mom is now staying in Durham, at her hotel. We picked up Indra and they are settled in nicely. Mom had her pulmonary function tests done and all seems well with those. Will and I made it back home safely.
Tomorrow morning, Mom and Indra will go to Duke Hospital via taxi so that Mom can get her Hickman line placed. Everything I've read indicates that they most often do this by giving general anesthesia, but occasionally they use sedation. I am not sure which Mom will have but I will update the blog tomorrow after I know the line has been successfully placed. After placement, Mom will meet with her doctor at the bone marrow transplant center and then go back to the hotel room, where the home health nurse will get her started on an IV in preparation for Friday's high dose chemo treatment.
Off to bed.... :-)
Tuesday, August 24, 2010
Update on Mom
Greetings Everyone,
I wanted to send out an email to everyone with updates on my Mom. For some of you, much of this is old news, while for others all of this will be new information. I haven't been the best at keeping in touch with many folk, but those who live close or who have been really involved in the process have been pretty much in the loop.
First, the good news. About a month ago, we learned that Mom is in a full remission from multiple myeloma. We are overjoyed! Our family took her out to celebrate at a French spot with amazing crepes and just had a ball.
Now, for the updates on what is coming up in the next few weeks. Duke is going to harvest Mom's stem cells and store them so that they are available to her when the cancer comes back, if she decides to have a bone marrow transplant. This is a very long and involved process. I'll give it to you step by step.
Tomorrow, I drive Mom to Duke where she will have some tests done. My uncle Eric's other half (Indra) will be flying in to Raleigh's airport, where we'll pick her up. She will be staying with Mom during the very high dose chemo treatment, since I am pregnant and can't take chances. Chemo is excreted in bodily fluids and having such a high dose could be risky to the baby if I were to get a large quantity of bodily fluids on me. We decided not to take that chance and Indra is beyond sweet to be flying in to be with my Mom during this process.
Thursday, Mom will have a Hickman port placed in her chest that allows the clinic easy access to her veins for administering chemotherapy and harvesting stem cells. Thursday evening a home health aide will go to Mom's hotel room to administer IV fluids in preparation for chemo.
Friday morning, Mom will receive her very high dose of Cytoxan, a chemotherapy drug. Even though Mom is in remission, they administer chemo to make sure as many cancer cells are gone as possible. The cleaner her stored stem cells are, the better a transplant will work, if she ever decides to have one.
Duke is going to be administering lots of anti-nausea medication and pain medication to Mom during the chemo and afterward. She will remain on the IV with fluids in her hotel room. Sunday, Allen, Will and I will drive to pick her up and Indra will fly home.
Beginning Monday (the 30th), Mom will be going to have bloodwork done every other day and will be giving herself a neupogen shot every single day. The neupogen makes more stem cells available in the blood stream. Since Mom isn't allowed to drive during this process, I'll be driving her to her appointments.
Sometime the weekend of the 4th/5th, my aunt Marilyn will be flying in from CA to help with the second time-frame where Mom will have to be at Duke. They'll drive up to Duke and starting Monday, Mom will have stem cells harvested through a process called aphoresis. They hook her up to a machine that circulates her blood and filters out the stem cells before pumping the rest of the blood back into her body. This process can take anywhere from one to five days, depending on how many stem cells are freely available in the bloodstream. Due to the unpredictable length of the process and Allen's limited available time off from work, along with Will not being allowed in the bone marrow transplant center, it would be pretty hard for us to be there. So, we are eternally grateful that Marilyn is going to be here and that she will be able to be with Mom during that process.
Following the stem cell harvesting, Mom will have a one to two week recovery period. That process usually makes people feel pretty tired and since the drugs leading up to it are pretty powerful, they do take a toll on the system.
Mid-September, Mom will begin her maintenance chemotherapy regimen. She will cycle between three different chemo drugs. One month it will be Velcade, the next melphalan and the next Revlimid. This cycling will continue for up to two years, as long as she remains in a remission. The goal of this therapy is to extend the length of her remission as long as possible.
I will be updating about Mom daily at a blog that I have set up. Please check there for updates. I think that is the easiest way for me to keep people informed.
Now, on a different note, many of you know that I am 23 weeks pregnant. We are extremely excited to be welcoming a new baby to our family in late December. My due date is December 22nd and we are working with a wonderful and skilled midwife who will be attending the homebirth of our child. We have not found out the gender and may end up keeping it a surprise this time. Everything is going well so far and we are overjoyed! In the next few months, we are also excited to be building an addition onto our home with a baby room, two offices and a second family room. There is never a dull moment around here! :-D
Thanks so much for all of your support and prayers. We feel them daily and even though I'm not always able to stay in touch the way I would like to, I really do love and appreciate all of you. I anticipate that things here will settle down a little after the next few weeks and that it will be easier for me to catch up with you and to stay in touch.
Much Love,
Anne
I wanted to send out an email to everyone with updates on my Mom. For some of you, much of this is old news, while for others all of this will be new information. I haven't been the best at keeping in touch with many folk, but those who live close or who have been really involved in the process have been pretty much in the loop.
First, the good news. About a month ago, we learned that Mom is in a full remission from multiple myeloma. We are overjoyed! Our family took her out to celebrate at a French spot with amazing crepes and just had a ball.
Now, for the updates on what is coming up in the next few weeks. Duke is going to harvest Mom's stem cells and store them so that they are available to her when the cancer comes back, if she decides to have a bone marrow transplant. This is a very long and involved process. I'll give it to you step by step.
Tomorrow, I drive Mom to Duke where she will have some tests done. My uncle Eric's other half (Indra) will be flying in to Raleigh's airport, where we'll pick her up. She will be staying with Mom during the very high dose chemo treatment, since I am pregnant and can't take chances. Chemo is excreted in bodily fluids and having such a high dose could be risky to the baby if I were to get a large quantity of bodily fluids on me. We decided not to take that chance and Indra is beyond sweet to be flying in to be with my Mom during this process.
Thursday, Mom will have a Hickman port placed in her chest that allows the clinic easy access to her veins for administering chemotherapy and harvesting stem cells. Thursday evening a home health aide will go to Mom's hotel room to administer IV fluids in preparation for chemo.
Friday morning, Mom will receive her very high dose of Cytoxan, a chemotherapy drug. Even though Mom is in remission, they administer chemo to make sure as many cancer cells are gone as possible. The cleaner her stored stem cells are, the better a transplant will work, if she ever decides to have one.
Duke is going to be administering lots of anti-nausea medication and pain medication to Mom during the chemo and afterward. She will remain on the IV with fluids in her hotel room. Sunday, Allen, Will and I will drive to pick her up and Indra will fly home.
Beginning Monday (the 30th), Mom will be going to have bloodwork done every other day and will be giving herself a neupogen shot every single day. The neupogen makes more stem cells available in the blood stream. Since Mom isn't allowed to drive during this process, I'll be driving her to her appointments.
Sometime the weekend of the 4th/5th, my aunt Marilyn will be flying in from CA to help with the second time-frame where Mom will have to be at Duke. They'll drive up to Duke and starting Monday, Mom will have stem cells harvested through a process called aphoresis. They hook her up to a machine that circulates her blood and filters out the stem cells before pumping the rest of the blood back into her body. This process can take anywhere from one to five days, depending on how many stem cells are freely available in the bloodstream. Due to the unpredictable length of the process and Allen's limited available time off from work, along with Will not being allowed in the bone marrow transplant center, it would be pretty hard for us to be there. So, we are eternally grateful that Marilyn is going to be here and that she will be able to be with Mom during that process.
Following the stem cell harvesting, Mom will have a one to two week recovery period. That process usually makes people feel pretty tired and since the drugs leading up to it are pretty powerful, they do take a toll on the system.
Mid-September, Mom will begin her maintenance chemotherapy regimen. She will cycle between three different chemo drugs. One month it will be Velcade, the next melphalan and the next Revlimid. This cycling will continue for up to two years, as long as she remains in a remission. The goal of this therapy is to extend the length of her remission as long as possible.
I will be updating about Mom daily at a blog that I have set up. Please check there for updates. I think that is the easiest way for me to keep people informed.
Now, on a different note, many of you know that I am 23 weeks pregnant. We are extremely excited to be welcoming a new baby to our family in late December. My due date is December 22nd and we are working with a wonderful and skilled midwife who will be attending the homebirth of our child. We have not found out the gender and may end up keeping it a surprise this time. Everything is going well so far and we are overjoyed! In the next few months, we are also excited to be building an addition onto our home with a baby room, two offices and a second family room. There is never a dull moment around here! :-D
Thanks so much for all of your support and prayers. We feel them daily and even though I'm not always able to stay in touch the way I would like to, I really do love and appreciate all of you. I anticipate that things here will settle down a little after the next few weeks and that it will be easier for me to catch up with you and to stay in touch.
Much Love,
Anne
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