Hello dear friends...
Today was a big day. Mom had an appointment at 2pm today where she found out the results of her latest bone marrow biopsy. And the results were......NO LEUKEMIA in her bone marrow. ZERO. ZILCH. NADA...HALLELUJAH!
So, in summary of all that the doctor said, mom's Intermediate Risk Leukemia is in remission. The chemotherapy cleaned out her marrow and there is absolutely NO leukemia to be found. WHOO!
Even with all of this great news there are, however, a few complications on the road ahead. They are still concerned about her liver. Even though her bilirubin counts continue to decrease, they are worried that her liver would not be able to handle another dosage of chemo. The doctors are annoyed that they cannot figure out the cause of her liver malfunction (the liver specialists think that it was just a response to all the drugs she was on...but they're not for certain). So, for the next couple weeks they will continue monitoring her as they have been since she's been home.
So, what are the next steps for the sweet Pammy Sue? Well, they are hoping to start consolidation chemotherapy in two weeks. What's that, you ask? Consolidation chemo is the second phase of chemotherapy (the first was Induction Chemo). The goal of this phase is to destroy any remaining leukemia cells that might have re-surfaced since her initial treatment. They will give her fairly high doses of chemo for 3-4 cycles. This time it will probably be done in an out-patient setting. So she will go in for her chemo treatment and then get to come home to recuperate.
There is a 50-60% risk of relapse for mom's type of AML. If she were to get a bone marrow transplant, her risk of relapse would decrease to 20%. So this is obviously the best option. However, one thing we all learned for the first time is that there is a 20-30% risk that the patient will die due to complications from the transplant. We're not going there.
We are hoping that mom's liver withstands this next round of chemo so that they can proceed towards a bone marrow transplant. The type of transplant she will receive is called an Allogeneic transplant. This replaces the abnormal cells in her bone marrow with healthy blood-forming cells from my Aunt Cindy. An Allogeneic transplant has a higher risk of serious side effects than consolidaiton chemo; however, the risk of relapse is lower. If all goes well, she will be receiving my Aunt Cindy's bone marrow in approximately 8 weeks.
So, that's all we know for now. Mom looks absolutely amazing and she says that she feels practically normal. If I can get her permission I will post a cute pic of her new stylin' wig!
Bless you all for your sweet care and abounding love!
Lindsay
Monday, March 31, 2008
Sunday, March 23, 2008
Easter Blessings
She's home! On Saturday the doctors decided to let my mom come home to be with our family over Easter weekend. What a memorable Easter it was! I called her as she was driving away from the hospital with my dad and she kept commenting on the beauty of the landscape. I guess staring at four hospital walls for 35 days makes one appreciate the small things that many times go unnoticed when they become part of our daily lives...like flowers and rain and chirping birds and home-cooked meals and sunsets ... and on and on and on. My old college Rhetoric professor called this the "Joy of Discovery" - seeing things that you see every day with fresh eyes as if you had just discovered it for the first time. So, moral of the story: don't let the beauty of God's crazy amazing Creation pass you by without standing still in awe and wonder every once in awhile!
One of our dear family friends brought the whole Beall gang Italian food on Saturday night and we had a celebratory homecoming for my sweet ma! And today - I don't think any of us will ever forget this Easter blessing. I couldn't have asked for a better gift - to see our family gathered around the table giving thanks to Christ for His many blessings... I think my mom said it best in her Easter dinner prayer (which she insisted on giving). So we all held hands and waited for her to pray through her emotion: "Thank you Lord for life and for second chances. Thank you for my precious family. And thank you for the small things. For trees and for mountains ... " We're all pretty much emotional time bombs at this point - and I don't think mom's sweet simple prayer left a dry eye at the table.
She goes in to the hospital tomorrow (Monday, 3/24) for more blood tests to see if she is able to stay at home and do outpatient treatment or if she will have to be re-admitted for inpatient. Will keep you posted as we know more. As far as her counts are concerned, they are steadily stabilizing and will hopefully continue to do so until she is able to get her bone marrow transplant.
What a beautiful Easter we have had today!
Once again, thank you all for your amazing love and support.
And thank you, Lord, for trees and for mountains. Amen.
Tuesday, March 18, 2008
Bilirubins...Down they go!
Good news folks! Looks like you all have some powerful prayers because her counts are drastically changing!
Here are her counts as of today:
White: 1.2
Platelets: 106
Bilirubins: 6.6!
HCT (Red): 27.5
It was from Sunday to Monday that her bilirubins dropped so drastically: from 19.6 to 7.5. The liver doctors were shocked....they wanted to do another lab because they thought they might have misread them. Well, they did the lab again today and they had decreased even more! Her coloring is looking better and she is feeling like her old self again! The liver doctors said that they were "signing off" because her liver is functioning properly and all is looking very promising. Good news!
So, the next step? Well, we are still waiting for her white counts to come up significantly so that she can go home for a bit before she receives the bone marrow transplant. On Saturday she had a Dobhoff tube (aka. feeding tube) inserted through her nostril. Lovely, I know. It goes down her throat and straight into her stomach. I am sure that the stabilization of her counts has a lot to do with her getting proper nutrition as well. She is gaining more of an appetite and can't stop talking about Elmer's Pancake House...so we know where we're going as soon as she gets released!
Thank you for your continued prayers and your constant support.
Here are her counts as of today:
White: 1.2
Platelets: 106
Bilirubins: 6.6!
HCT (Red): 27.5
It was from Sunday to Monday that her bilirubins dropped so drastically: from 19.6 to 7.5. The liver doctors were shocked....they wanted to do another lab because they thought they might have misread them. Well, they did the lab again today and they had decreased even more! Her coloring is looking better and she is feeling like her old self again! The liver doctors said that they were "signing off" because her liver is functioning properly and all is looking very promising. Good news!
So, the next step? Well, we are still waiting for her white counts to come up significantly so that she can go home for a bit before she receives the bone marrow transplant. On Saturday she had a Dobhoff tube (aka. feeding tube) inserted through her nostril. Lovely, I know. It goes down her throat and straight into her stomach. I am sure that the stabilization of her counts has a lot to do with her getting proper nutrition as well. She is gaining more of an appetite and can't stop talking about Elmer's Pancake House...so we know where we're going as soon as she gets released!
Thank you for your continued prayers and your constant support.
Thursday, March 13, 2008
And the winner is....
Yes, that's right folks, my dear sweet Aunt Cindy (pammy sue's youngest sister) is a donor match with my mom's bone marrow! Thank the Lord! Sorry Uncle Larry, looks like you're not the giver of life this time around. ;) The doctors were thrilled to share that news with us yesterday. If neither one of my aunt or uncle were a match they would have to go out to the general public to try to find a match ... and who knows how long that would take.
DOCTOR REPORT:
- They did an ultrasound yesterday and found NO abnormalities in the direction of her blood flow (which is what they were hoping for).
- Her bilirubin count is still creeping up (though at a much slower pace). It is currently at 16.5. The doctors don't seem to be too terribly concerned about this; however, they are at a stand still until it deescalates. They are monitoring her closely and hope that her bilirubins will plateau and start dropping very soon..
- Her white count is at 0.8 which is still severely low and her red blood cells are at 27.2. Her platelet counts are improving slowly at 42. I'm sure these numbers don't make much sense without you knowing what they need to be at. Well, in order for them to proceed with the bone marrow transplant, mom's white cell counts need to be at 15 (currently at 0.8) and her platelet counts need to be at 100 (now at 42). So, it could take awhile for these numbers to get to the desired goal....but we are hopeful and confident that they will.
- The good news is that they have an action plan all ready to roll for when my mom's counts recover. The doctors seemed hopeful but frustrated that they're having too wait. But what can you do?
Mom has been such a trooper. One of the Physician's Assistants came in the other night and encouraged her that she needs to prepare her mind and spirit because she still has a long haul ahead. So, keep those prayers and encouraging words flowing - it is at this point where despair and depression seem to hit patients. But thankfully we have something bigger to hope for, right? Our God is the Ultimate Healer and the lifter of our heads.
A quick little story: when my mom called Aunt Cindy to tell her about the bone marrow results we put her on speaker phone. In my mom's soft and weary voice she said slowly, "Well Cin, looks like you won the lottery." My precious Aunt started crying immediately and responded, "What a joy! I am so very blessed and honored! " Her response was so beautiful - don't know that many people who would respond with such joy after hearing that they have to donate their bone marrow. You are one of a kind, Aunt Cindy! My mom ended the conversation by saying, "Well, I guess it paid off being so nice to you all these years." ;) Even in her sickness she is still a wiry little thing, that's for sure.
Will send you more info. as soon as we know.... In the meantime, keep praying for her counts to recover. Thank you again for everything you have done for my sweet ma and for our family.
Lovingly,
Lindsay
DOCTOR REPORT:
- They did an ultrasound yesterday and found NO abnormalities in the direction of her blood flow (which is what they were hoping for).
- Her bilirubin count is still creeping up (though at a much slower pace). It is currently at 16.5. The doctors don't seem to be too terribly concerned about this; however, they are at a stand still until it deescalates. They are monitoring her closely and hope that her bilirubins will plateau and start dropping very soon..
- Her white count is at 0.8 which is still severely low and her red blood cells are at 27.2. Her platelet counts are improving slowly at 42. I'm sure these numbers don't make much sense without you knowing what they need to be at. Well, in order for them to proceed with the bone marrow transplant, mom's white cell counts need to be at 15 (currently at 0.8) and her platelet counts need to be at 100 (now at 42). So, it could take awhile for these numbers to get to the desired goal....but we are hopeful and confident that they will.
- The good news is that they have an action plan all ready to roll for when my mom's counts recover. The doctors seemed hopeful but frustrated that they're having too wait. But what can you do?
Mom has been such a trooper. One of the Physician's Assistants came in the other night and encouraged her that she needs to prepare her mind and spirit because she still has a long haul ahead. So, keep those prayers and encouraging words flowing - it is at this point where despair and depression seem to hit patients. But thankfully we have something bigger to hope for, right? Our God is the Ultimate Healer and the lifter of our heads.
A quick little story: when my mom called Aunt Cindy to tell her about the bone marrow results we put her on speaker phone. In my mom's soft and weary voice she said slowly, "Well Cin, looks like you won the lottery." My precious Aunt started crying immediately and responded, "What a joy! I am so very blessed and honored! " Her response was so beautiful - don't know that many people who would respond with such joy after hearing that they have to donate their bone marrow. You are one of a kind, Aunt Cindy! My mom ended the conversation by saying, "Well, I guess it paid off being so nice to you all these years." ;) Even in her sickness she is still a wiry little thing, that's for sure.
Will send you more info. as soon as we know.... In the meantime, keep praying for her counts to recover. Thank you again for everything you have done for my sweet ma and for our family.
Lovingly,
Lindsay
Thursday, March 6, 2008
Day 20: keep on truckin'
Dearest friends...
I know many of you have become loyal bloggers and check it on a daily basis ... or multiple times a day for some of you ... i know who you are! ;) My point being, I am sorry to keep you waiting in anticipation for updates.
Ever since sharing the good news about not finding leukemia in mom's bone marrow things have been a bit interesting. Ever since she stopped receiving chemotherapy they have been monitoring her very closely. She was receiving platelet transfusions but her body was rejecting them (they were wanting to keep her levels to at least 50...they should ideally be 150 but hers were only at FIVE). Thankfully, they found a cross-match and now her platelet levels are looking good.
Her white blood cell counts are severely low (1.6 when it should be between 4.4 and 11). She had a CT Scan to see if she had internal bleeding. Results show that her bleeding has stopped, which is great, but they found that her liver is not functioning properly. She had an ultrasound done yesterday to look at her liver more closely. Her bilirubin count has skyrocketed. It is currently at 11.2 when it should only be between 0.2 and 1.5. Yikes! For those of you who, like me, thought bilirubins were lyrics from a Wee Sing ditty, let me give you a wee bit of medical info for the not-s0-medically-minded...
Bilirubin is a brownish yellow substance found in bile. It is produced when the liver breaks down old red blood cells. When bilirubin levels are high, the skin and whites of the eyes may appear yellow (jaundice). Jaundice may be caused by liver disease (hepatitis), blood disorders (hemolytic anemia), or blockage of the tubes (bile ducts) that allow bile to pass from the liver to the small intestine.
In mom's case, her high bilirubin count is due to a blockage in her bile duct. The opening of her duct starts at 1.4 centimeters and then decreases to 0.7, causing a backup of bile in mom's liver that cannot get to her colon; therefore causing jaundice. I tried singing Willy Wonka's "Oompa Loompa" to her but she didn't find it very funny... ;)
They think that the chronic narrowing of her bile duct could be due to a gull bladder surgery that went awry 10-15 years ago (where they nicked her bile duct during surgery...). There is a procedure called ERCP which goes in and opens her ducts but the risk of infection is too great with her white counts being so low that they are going to wait.
She is losing handfuls of hair but still looking gorgeous! For the first time in her life she is thankful for having such thick hair. ;) She is still very nauseas and finding it hard to eat ... but she is still smiling nonetheless.
Thanks for all your fun & thoughtful comments on the blog! When she has the energy she reads them herself and other times she loves just closing her eyes and having us read your sweet words to her. She loves you all dearly and is overwhelmed by your support. She wants to write an update from herself as soon as she feels up to it.
The Beall family loves you and we are so very humbled by your care!
luv,
lindsay
I know many of you have become loyal bloggers and check it on a daily basis ... or multiple times a day for some of you ... i know who you are! ;) My point being, I am sorry to keep you waiting in anticipation for updates.
Ever since sharing the good news about not finding leukemia in mom's bone marrow things have been a bit interesting. Ever since she stopped receiving chemotherapy they have been monitoring her very closely. She was receiving platelet transfusions but her body was rejecting them (they were wanting to keep her levels to at least 50...they should ideally be 150 but hers were only at FIVE). Thankfully, they found a cross-match and now her platelet levels are looking good.
Her white blood cell counts are severely low (1.6 when it should be between 4.4 and 11). She had a CT Scan to see if she had internal bleeding. Results show that her bleeding has stopped, which is great, but they found that her liver is not functioning properly. She had an ultrasound done yesterday to look at her liver more closely. Her bilirubin count has skyrocketed. It is currently at 11.2 when it should only be between 0.2 and 1.5. Yikes! For those of you who, like me, thought bilirubins were lyrics from a Wee Sing ditty, let me give you a wee bit of medical info for the not-s0-medically-minded...
Bilirubin is a brownish yellow substance found in bile. It is produced when the liver breaks down old red blood cells. When bilirubin levels are high, the skin and whites of the eyes may appear yellow (jaundice). Jaundice may be caused by liver disease (hepatitis), blood disorders (hemolytic anemia), or blockage of the tubes (bile ducts) that allow bile to pass from the liver to the small intestine.
In mom's case, her high bilirubin count is due to a blockage in her bile duct. The opening of her duct starts at 1.4 centimeters and then decreases to 0.7, causing a backup of bile in mom's liver that cannot get to her colon; therefore causing jaundice. I tried singing Willy Wonka's "Oompa Loompa" to her but she didn't find it very funny... ;)
They think that the chronic narrowing of her bile duct could be due to a gull bladder surgery that went awry 10-15 years ago (where they nicked her bile duct during surgery...). There is a procedure called ERCP which goes in and opens her ducts but the risk of infection is too great with her white counts being so low that they are going to wait.
She is losing handfuls of hair but still looking gorgeous! For the first time in her life she is thankful for having such thick hair. ;) She is still very nauseas and finding it hard to eat ... but she is still smiling nonetheless.
Thanks for all your fun & thoughtful comments on the blog! When she has the energy she reads them herself and other times she loves just closing her eyes and having us read your sweet words to her. She loves you all dearly and is overwhelmed by your support. She wants to write an update from herself as soon as she feels up to it.
The Beall family loves you and we are so very humbled by your care!
luv,
lindsay
Saturday, March 1, 2008
Hallelujah!
Mom's bone marrow biopsy results came back and they couldn't find any leukemia! Praise the Lord! Also, the results of her colonoscopy showed that she had colitis (inflammation of the colon) as well as an ulcerated colon. They took a biopsy on the colitis and we are awaiting results of that (hopefully will receive on Monday).
Good News Report: The doctors were so excited to share the news of the bone marrow biopsy with mom. They couldn't see any leukemia in the bone marrow (not to say that there couldn't be any, but it is still great news!). They can't call it remission yet until further screening is done, but what they did see means that she won't need any more chemo as of now. Phew! Also, her bleeding has stopped which is amazing! So right now their focus is to get mom strong and as healthy as they can.
She has been doing so well that they just moved her out of ICU into the Oncology Unit on the 5th Floor. She is in great spirits and is enjoying having her family close by. We're trying to make her stop being so social so she can get some rest, but you know her...that's hard to do!
On Day 28 they will be doing another bone marrow biopsy to see if they find any leukemia. So until then, we as a family are just thanking the Lord for today and rejoicing in life!
Blessings & Love to you all!
Lindsay & the entire Beall Gang
Good News Report: The doctors were so excited to share the news of the bone marrow biopsy with mom. They couldn't see any leukemia in the bone marrow (not to say that there couldn't be any, but it is still great news!). They can't call it remission yet until further screening is done, but what they did see means that she won't need any more chemo as of now. Phew! Also, her bleeding has stopped which is amazing! So right now their focus is to get mom strong and as healthy as they can.
She has been doing so well that they just moved her out of ICU into the Oncology Unit on the 5th Floor. She is in great spirits and is enjoying having her family close by. We're trying to make her stop being so social so she can get some rest, but you know her...that's hard to do!
On Day 28 they will be doing another bone marrow biopsy to see if they find any leukemia. So until then, we as a family are just thanking the Lord for today and rejoicing in life!
Blessings & Love to you all!
Lindsay & the entire Beall Gang
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