It has been a while since I have updated this blog with information regarding Jodi and her battle with multiple myeloma.
Quick recap:
She was officially diagnosed back in March of 2011. She went through an autologous stem cell transplant in the summer of 2011 in Chicago at the University of Illinois, Chicago. FOllowing the stem cell transplant she remained on maintenance chemo therapy. She did fairly well but the disease worked its way back in the Spring of 2012.
Jodi had her 2nd autologous stem cell transplant in the summer of 2012 and once again she fought like a Brave and kicked the cancer back into remission. This was done in Chicago as well. She went back to Denver on maintenance chemotherapy in the fall of 2012 and continued to do well.
She continued to be followed and cared for by her physicians in Denver and her physicians here in Chicago. It became apparent that she was going to need to go on a stronger chemotherapy in the Winter of 2012 - 2013 and she was started on a new regimen of chemo medications in the beginning of 2013.She has been getting her labs and blood work taken regularly and following the cancer cells.
The most recent development has been that unfortunately the combination of cancer medications she has been on are not effectively controlling the cancer. Jodi came back to CHicago to have all her labs done and to work with her doctors to come up with a new plan. Her most recent labs show that the current chemotherapy is not getting the job done. A new plan of attack has been put together and Jodi is starting a new course of chemotherapy medications.
Often patients who have a poor response to the form of chemotherapy that Jodi was on, often have an excellent response to the chemotherapy that she will be starting. Jodi's health over all is great. SHe is doing well and she is ready for the next round of battle. She will return to Denver this next week and start her new chemotherapy and continued to be monitored by her doctors in Denver and Chicago. All is well and she continues to be a fighter.
Justin, You can't have her yet!
Thanks,
Jared
Sunday, May 19, 2013
Wednesday, July 4, 2012
Day 6 after Transplant = Good News No WBC's
Happy 4th of July 2012
Here is an update on Jodi's progress.
Last Thursday 06/28/12 she was infused with her own stem cells. These are pure undifferentiated cells that will take home in her bone marrow and receive signals to grow and differentiate into New Bone Marrow. A true miracle.
She is now at day 6 and we are watching her White Blood Cells (WBC) drop down. We want her to go to 0.0 WBC's. Once she hits 0.0 her body will then signal the stem cells to start differentiating and grow into new healthy bone marrow.
GOOD NEWS:
Here is how she has been progressing:
6/29 WBC's: 3.9
6/30 WBC's: 1.3
7/01 WBC's: 1.0
7/02 WBC's: 0.5
7/03 WBC's: 0.3
7/04 WBC's: 0.0 This is excellent news!
She hit 0.0 2 days earlier than her last transplant which is a great prognostic indicator. Now we watch the stem cell graft take hold and start to work. If all goes well we will see a steady climb in her WBC count. Usually it takes a few days to start working and for the new healthy bone marrow to produce new WBC's.
Last time around she was very sick and out of it completely and it took longer for her WBC's to hit 0.0 and 7 - 10 days to grow and develop new WBC's back to a normal level of ~4.0. Once she hits a normal WBC level and remains afebrile then she will get to leave the hospital.
Last time around she hit WBC count of 0.0 of day 8 of transplant and was at a normal WBC level on day 15 and then discharged on day 17. This time she hit 0.0 at day 6 and we watch now and wait and see. If she continues on her current path she could hit a normal WBC in the next week or so and then hopefully be discharged a couple of days later.
She is doing very well!! Thank you for all of the love and support.
She is positive and doing well but she is still sick and dealing with the side effects from the chemotherapy.
A brief explanation of why these chemotherapy drugs cause certain side effects:
First she received a poison that shut her immune system down and essentially turned her worsening bone marrow off. This is the medication that has so many bad side effects. It attacks rapidly dividing cells. Most cancers are rapidly dividing cells, growing out of control. They have lost the ability to be inhibited by the body.
Cancer cells are a lot like teenagers, they have lost all inhibition and just ignoring all the signals to stop, the cells like teenagers, think they know everything and the rebel cells keep dividing and growing. The medication recognizes rapidly dividing cells and stops the growth.
This is good and bad because we have normal cells in our body that are not cancerous but still rapidly divide. For example, the tissue linking our mouths and entire gastrointestinal tract are all rapidly dividing cells. This is why mouth injuries heal very quickly. The cells are constantly replacing themselves with new cells. The chemotherapy that Jodi receives not only attacks the rapidly dividing cancer cells in her bone marrow but also attacks her normal rapidly dividing cells in her mouth GI tract, hair etc. Hence the noxious side effects.
Here is an update on Jodi's progress.
Last Thursday 06/28/12 she was infused with her own stem cells. These are pure undifferentiated cells that will take home in her bone marrow and receive signals to grow and differentiate into New Bone Marrow. A true miracle.
She is now at day 6 and we are watching her White Blood Cells (WBC) drop down. We want her to go to 0.0 WBC's. Once she hits 0.0 her body will then signal the stem cells to start differentiating and grow into new healthy bone marrow.
GOOD NEWS:
Here is how she has been progressing:
6/29 WBC's: 3.9
6/30 WBC's: 1.3
7/01 WBC's: 1.0
7/02 WBC's: 0.5
7/03 WBC's: 0.3
7/04 WBC's: 0.0 This is excellent news!
She hit 0.0 2 days earlier than her last transplant which is a great prognostic indicator. Now we watch the stem cell graft take hold and start to work. If all goes well we will see a steady climb in her WBC count. Usually it takes a few days to start working and for the new healthy bone marrow to produce new WBC's.
Last time around she was very sick and out of it completely and it took longer for her WBC's to hit 0.0 and 7 - 10 days to grow and develop new WBC's back to a normal level of ~4.0. Once she hits a normal WBC level and remains afebrile then she will get to leave the hospital.
Last time around she hit WBC count of 0.0 of day 8 of transplant and was at a normal WBC level on day 15 and then discharged on day 17. This time she hit 0.0 at day 6 and we watch now and wait and see. If she continues on her current path she could hit a normal WBC in the next week or so and then hopefully be discharged a couple of days later.
She is doing very well!! Thank you for all of the love and support.
She is positive and doing well but she is still sick and dealing with the side effects from the chemotherapy.
A brief explanation of why these chemotherapy drugs cause certain side effects:
First she received a poison that shut her immune system down and essentially turned her worsening bone marrow off. This is the medication that has so many bad side effects. It attacks rapidly dividing cells. Most cancers are rapidly dividing cells, growing out of control. They have lost the ability to be inhibited by the body.
Cancer cells are a lot like teenagers, they have lost all inhibition and just ignoring all the signals to stop, the cells like teenagers, think they know everything and the rebel cells keep dividing and growing. The medication recognizes rapidly dividing cells and stops the growth.
This is good and bad because we have normal cells in our body that are not cancerous but still rapidly divide. For example, the tissue linking our mouths and entire gastrointestinal tract are all rapidly dividing cells. This is why mouth injuries heal very quickly. The cells are constantly replacing themselves with new cells. The chemotherapy that Jodi receives not only attacks the rapidly dividing cancer cells in her bone marrow but also attacks her normal rapidly dividing cells in her mouth GI tract, hair etc. Hence the noxious side effects.
Friday, June 29, 2012
Updates On Jodi's Treatment 2nd Transplant
I will first start off by saying that this is not the easiest disease, treatment plan to explain. I figured I would update the blog to help clear up any confusion and hopefully answer any questions that you may have.
#1 Is Jodi's cancer back? Has she relapsed?
Answer = Kind of....? Jodi's health has not been as good as it is right now in a long time however at her last round of check ups 3 months ago there were a few lab tests that suggested she might be headed for a relapse. Now at her most recent check up here in June more tests came back that put her right up to the edge of relapse. Really at this point it is like splitting hairs to say relapse or still in remission. A better way to think about it is that, she is in the beginning of a relapse or on her on her way to relapse.
The doctors all know if nothing is done she will be in full blown relapse at her next round of check ups in 3 months. The decision was made to go ahead and treat her aggressively now rather than wait for the disease to progress any further. She is actually much healthier now than when she went through the first autologous bone marrow transplant.
Her options after the last round of lab results were: 1. Do nothing and wait and see. 2. Start more aggressive chemotherapy and wait to do a second bone marrow transplant or 3. Go straight to the second bone marrow transplant.
She opted for choice 3 which in her case, is the best option. She actually has already started the process and so far, she is doing well. She is a lot healthier than when she had her first bone marrow transplant which is a good indicator for how she will do. She is hitting the disease before it has had the chance to cause full blown relapse. This is an aggressive approach and considered to be part of a trend in treating cancers. Doctors have been moving away from the "wait and see" and then use the bone marrow transplant as a last effort treatment when all other options have been exhausted.
In Multiple Myeloma patients who are fortunate enough to be able to receive autologous bone marrow transplants, only have enough stem cells to do a total of 2 transplants after the second transplant they fight any relapses with a variety of different chemotherapies and other treatments. Many studies have shown that hitting the cancer fast and hard with 2 bone marrow transplants prior to full relapse provides better longterm outcomes. This is called a Tandem Transplant. In cases where patients receive a 2nd transplant after they have been in full blown relapse and battled the cancer with many different chemotherapies the 2nd transplant is called a Salvage Transplant.
Given Jodi's good health and much stronger disposition as compared to her 1st transplant, her doctors think that the best approach for her now is to proceed with the 2nd transplant and she should respond well and actually tolerate it better than she did the first time as her cancer was significantly more advanced at that time. In fact her numbers now, had they been the numbers when she was first diagnosed would probably cause the doctors to not do any treatment and just watch and see if the disease progressed. However since we know that she is on the path to full relapse they want to stop the progression in it's tracks.
This is a rather brief overview of what Jodi is going through but hopefully it sheds some light on her condition and the current treatment plan.
She has already received her first dose of big chemo that will take her white blood cells to 0 and is now admitted into the "bubble" while she waits for her immune system to shut off. Once this occurs they will transplant the new bone marrow and wait for it to take it's effect and replace any and all of the diseased bone marrow. She has had her bone marrow biopsy which was very good compared to her first biopsy, her port has been placed and the chemo has been administered. She will most likely lose her hair again and have a month or longer of some long days in the hospital. Then she will be discharged and receive outpatient therapy for a few weeks / 1 - 2 months and most like be able to return to Colorado after the process is complete.
Ed has been here by her side every step of the way and Jodi has been tough as always. She is a fighter and doing well.
Feel free to share this post and blog and I will update it from time to time with information as it becomes available.
Thanks,
Jared
#1 Is Jodi's cancer back? Has she relapsed?
Answer = Kind of....? Jodi's health has not been as good as it is right now in a long time however at her last round of check ups 3 months ago there were a few lab tests that suggested she might be headed for a relapse. Now at her most recent check up here in June more tests came back that put her right up to the edge of relapse. Really at this point it is like splitting hairs to say relapse or still in remission. A better way to think about it is that, she is in the beginning of a relapse or on her on her way to relapse.
The doctors all know if nothing is done she will be in full blown relapse at her next round of check ups in 3 months. The decision was made to go ahead and treat her aggressively now rather than wait for the disease to progress any further. She is actually much healthier now than when she went through the first autologous bone marrow transplant.
Her options after the last round of lab results were: 1. Do nothing and wait and see. 2. Start more aggressive chemotherapy and wait to do a second bone marrow transplant or 3. Go straight to the second bone marrow transplant.
She opted for choice 3 which in her case, is the best option. She actually has already started the process and so far, she is doing well. She is a lot healthier than when she had her first bone marrow transplant which is a good indicator for how she will do. She is hitting the disease before it has had the chance to cause full blown relapse. This is an aggressive approach and considered to be part of a trend in treating cancers. Doctors have been moving away from the "wait and see" and then use the bone marrow transplant as a last effort treatment when all other options have been exhausted.
In Multiple Myeloma patients who are fortunate enough to be able to receive autologous bone marrow transplants, only have enough stem cells to do a total of 2 transplants after the second transplant they fight any relapses with a variety of different chemotherapies and other treatments. Many studies have shown that hitting the cancer fast and hard with 2 bone marrow transplants prior to full relapse provides better longterm outcomes. This is called a Tandem Transplant. In cases where patients receive a 2nd transplant after they have been in full blown relapse and battled the cancer with many different chemotherapies the 2nd transplant is called a Salvage Transplant.
Given Jodi's good health and much stronger disposition as compared to her 1st transplant, her doctors think that the best approach for her now is to proceed with the 2nd transplant and she should respond well and actually tolerate it better than she did the first time as her cancer was significantly more advanced at that time. In fact her numbers now, had they been the numbers when she was first diagnosed would probably cause the doctors to not do any treatment and just watch and see if the disease progressed. However since we know that she is on the path to full relapse they want to stop the progression in it's tracks.
This is a rather brief overview of what Jodi is going through but hopefully it sheds some light on her condition and the current treatment plan.
She has already received her first dose of big chemo that will take her white blood cells to 0 and is now admitted into the "bubble" while she waits for her immune system to shut off. Once this occurs they will transplant the new bone marrow and wait for it to take it's effect and replace any and all of the diseased bone marrow. She has had her bone marrow biopsy which was very good compared to her first biopsy, her port has been placed and the chemo has been administered. She will most likely lose her hair again and have a month or longer of some long days in the hospital. Then she will be discharged and receive outpatient therapy for a few weeks / 1 - 2 months and most like be able to return to Colorado after the process is complete.
Ed has been here by her side every step of the way and Jodi has been tough as always. She is a fighter and doing well.
Feel free to share this post and blog and I will update it from time to time with information as it becomes available.
Thanks,
Jared
Saturday, August 6, 2011
One of Dodo's favorite Gifts
Jodi proudly wears her beloved family tree necklace that was hand delivered by her grandson, Jared. This is a handpicked gift from Mimi and Jenner. "Thank you" Jodi will not take the necklace off, so it is safe to say she loves it.
Tuesday, August 2, 2011
Jodi's Recovery Journal, week 3 and into week 4
The phoenix has long been presented as a symbol of rebirth, immortality, and renewal.
It is time for another update on Jodi’s recovery. The light can be seen at the end of the tunnel is a fitting cliché to describe Jodi’s recovery at this point. She has really been fortunate at every stage of her illness and her recovery has been no different. She has continued to get better a little each day since being discharged from the hospital. Along the way her doctors and nurses have been amazed at how well she is doing.
Jodi was discharged from the hospital just over 3 weeks ago. Generally most patients find that they do not even start to feel anything like their normal selves until at least 30 – 60 days after being discharged from the hospital following an autologous stem cell transplant. Jodi has been gaining strength and feeling a little better each day. She finally started well enough to come down to the dinner table for dinner about 10 days ago which was a big step.
For the first week after coming home Jodi was so exhausted she could barely get out of bed. She spent most of the day sleeping and she had to be practically force fed to keep her from becoming malnourished. All the food just sounded awful to her and made her nauseous. She had no appetite and just felt exhausted all the time. The thought of being stuck in that state of health forever was a real fear for her. She actually was doing much better than expected for her first week. Many patients get rushed back into the hospital for a variety of complications, all of which Jodi successfully avoided.
During the second week home she really started to turn the corner and began feeling better. She could get up and walk around a little each day and started socializing which was a sure sign and a good sign that Jodi was back. J During the third week she really blossomed and began actually leaving the house occasionally on a short errand with Ed. Two days ago the whole family including Jodi met me at 5 Guys Burgers after my shift at 8:30pm. This was amazing that she had the strength and health to do this as we did not expect this level of health and energy for a few more weeks. It truly was unbelievable how well she has bounced back from the depths of cancer misery.
As we enter the fourth week Jodi has been up and about each day walking up and down the stairs. She is no longer nauseous and is getting her appetite back. It is great to see the Jodi we all know and love starting to reemerge. It has been nothing short of a miracle.
Just before entering the hospital Jodi was given a very powerful blessing where she was told that at some point her healthcare providers, nurses and doctors would actually tell her that her healing was a miracle and use the exact word “miracle”. Now that some time has passed since the blessing and hospitalization it has become clear that her progress has been a miracle. Two doctors and One nurse have told me on separate occasions that Jodi’s recovery and progress have been a miracle and I can say from a medical standpoint it has been a miracle.
Friday, July 15, 2011
Jodi's Adjustment to Home Life
Extra, Extra read all about it:
Grant, Kellen and Lennox make Dodo's day!! Thank you Stephanie and boys!
Also, a big shout out to Staci my sister who sent a great personal write up on how to feed and what to feed a patient who has no appetite and does not want to eat. This was amazing and truly helped in getting Jodi to eat and getting her well nourished. Thank you!
Also, a big shout out to Staci my sister who sent a great personal write up on how to feed and what to feed a patient who has no appetite and does not want to eat. This was amazing and truly helped in getting Jodi to eat and getting her well nourished. Thank you!
As you know Jodi has been out of the hospital for almost one week now. Tomorrow will be her "one week home" celebration. She has been doing well but it has been an adjustment for her and her body as she has gone from the hospital environment to the home environment.
Most patients with prolonged hospital stays and intensive treatments will spend the first couple of weeks or even longer just sleeping when they get out of the hospital. They often become dehydrated because they no longer have an IV and they will also have some form of body aches and pains as they have been on IV medications in the hospital around the clock and in the home environment they no longer have IV access and will take medications by mouth rather than IV formulations. Needless to say their body has to make adjustments to the home environment.
Jodi has done well and with Ed's help and constant presence Jodi has been able to dodge many of the standard pitfalls of the post hospital "yuck". Jodi has been fatigued but has had limited nausea, minor pain and no significant misery. We have been pleased with these results and more importantly she has avoided any infections and has not fallen and broken any bones. Falls and infections are two common disasters that occur in recovering patients that can have devastating outcomes.
All of the precautions to avoid infections and falls have been put in place and Ed has been diligent in doing his job to keep Jodi safe from these complications and he remains on guard. This first week has been a great week when compared with the normal progression a patient goes through as they transition from the hospital to home. However Jodi has still had her share of reminders that her body has been at war with cancer.
Her first night home was an emotional, wonderful as well as a difficult night for Jodi. As her body adjusted she was overwhelmed with fatigue and exhaustion. She had a tough time “getting comfortable” which made it difficult to sleep. She has very little recollection of that first night, which is a great thing the body and mind do to help the patient get through the tougher times. It just becomes a blur which turns out to be a blessing because if she could recall the tougher times with great detail she would be anxious about any possibility of experiencing that level of discomfort again. In her case she has been able to really avoid the typical prolonged discomfort that often is experienced.
Jodi has been alert and feeling “good” this week. She has been able to get up and walk around, spend time with all of us talking and watching some TV. Ed has continued to read to her and she has been remarkably doing well. She has been plagued with exhaustion, fatigue and no appetite but much less than expected. She has put up with us keeping her fed and hydrated even though the thought of any food seems unbearable to her at this point. Each night she has been able to stay up a little later as we attempt to get her back to her pre hospital schedule. Last night was a late night as she was able to stay up until 9:00pm. They had her pretty well out between 7:00 – 8:00 pm while in the hospital and would wake her up throughout the night and early morning for various tests and exams.
She is still not into reading her emails herself or getting on the computer as these activities tend to make her more fatigued, nauseous or uncomfortable. She also has not done much talking on the phone. However she loves the phone calls, letters, emails and good vibes and prayers from everyone. Ed will read letters and emails to her and she loves looking at the pictures and letters from the grandchildren!
Grant, Kellen and Lennox are the superstars with there great drawings and letters (numbers), these things keep Jodi going.
It has been a true blessing in our home to see the love and respect that Ed and Jodi have for each other and to be surrounded by the wisdom and knowledge that comes from 49 years of marriage and years of serving each other and all those around them. They truly are absolutely “in love” and really still like each other. This love and service has been a great influence and a welcomed example in our home. We are lucky to have them here and share this part of their life and have them as part of our life.
Ivy, Mazzy, Matia and I have been rewarded to have Ed and Jodi here for family prayers and scriptures and family home evening and all of the other day to day aspects or our lives that have been blessed by having Ed’s and Jodi’s example, knowledge and influence here in our home. I love hearing Mazzy and Ivy yell out “Dodo and Papa, it’s time for scriptures and prayers!” as we gather at Dodo and Papa’s entrance to their bedroom to say goodnight and read and have family prayer. Priceless.
Ivy, Mazzy, Matia and I have been rewarded to have Ed and Jodi here for family prayers and scriptures and family home evening and all of the other day to day aspects or our lives that have been blessed by having Ed’s and Jodi’s example, knowledge and influence here in our home. I love hearing Mazzy and Ivy yell out “Dodo and Papa, it’s time for scriptures and prayers!” as we gather at Dodo and Papa’s entrance to their bedroom to say goodnight and read and have family prayer. Priceless.
“Thank you everyone for all of your support and love!” ~ Jodi
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