This is hard. Life after your husband, your children's father, your best friend gets cancer, needs a bone marrow transplant to be cured, and is almost done with his chemotherapy after transplant. Oh, and did I mention, leukemia is my career. Literally what I focus on day in and day out at work. I have seen amazing success stories - kids and young adults who survive, no - who thrive. But God help me - that is not what I remember. I remember those who relapse, who have horrible side effects, who suffer and die. With the end of chemo coming it's all I can do to not think about this. What if this pill is keeping his leukemia at bay. What if once he stops - it comes back. But not like before. Resistant to chemotherapy. Resistant to therapy. My kids are bigger. They would remember it. They would remember their daddy getting sick, being in the hospital, and they would remember...
I am told and I know his chances of relapse are low. However - IT HAPPENS! I can't, I just can't lose him. I get so frustrated when my fears are minimized. And I also get frustrated that I can't even figure out how to bring up my fears and talk about them. IT HAPPENS. People relapse who shouldn't.
Kevin does get the best care - but it is frustrating for me. I feel completely alone and scared. I won't and can't tell him how I feel. I won't allow him to be worried about how I feel. I don't know how to explain to anyone what this is like. And when I try to take the time to think about this or how I react - the guilt sets in. I am not the one with a life threatening disease. If he is thriving - I should be too. Ugh; I am not even sure what this post is about... I just needed to type; to get it out.
Tuesday, July 21, 2015
Monday, May 18, 2015
Thank you
The Leukemia and Lymphoma Society held it's annual Gala this past weekend for the Man & Woman of the Year. It was a wonderful event.
The past 10 weeks has been about raising money for research. I surpassed my goal of $50K by a lot (grand total will be coming in the next week or so).
I am honor to tell you about an amazing award that I was nominated for (not based on the dollar amount I raised) by my fundraising team - specifically my husband and mother-in-law. It was the Community Involvement Award. I have never received something like this before and it was one of the biggest honors of my life. Ptosha Davis, the mother of Jori (my first AML patient as a nurse practitioner), gave me the award and said the kindest and most moving things I have ever heard. The world lost a bright light the day Jori passed. Her, with all of my other patients and family - drive me to help find a cure. I have no doubt that one day we will get there.
I am very excited to tell you some more news. I LOST the Woman of the Year award. This is a WONDERFUL thing!! That means, someone raised more than me. So much money was raised by all of the candidates! Nearly $400K!!! Just think about the future patients that this will benefit. (It gives me goose bumps thinking about this).
What I am sad about is that I did not get to thank everyone in a public forum. So here it goes; my "thank you":
I need to first thank Dr Carlson and Dr Hari for nominating me. And above everything - curing my husband.
My family would not be intact if it wasn't for the care that the Medical College of Wisconsin provided. The cancer team at Froedtert cured my husband. And the cancer team at Children's Hospital of Wisconsin kept me sane and helped me hold my family and life together.
My team manager, Amber Essenmacher, for all the help given during the past 10 weeks. I am so blessed to have met her and call her a dear friend.
And of course all my team members that helped me raise money: Kevin Brickler, Alli Grady, Kristen Tews, Meghan Belongia, Becky Rusch, Susie Burke, Diane Brickler, Tonya Ureda, Brooke Brickler, Chris Schulta, Phyllis Sommer and Joanna O'Brien. And of course; every single person that donated.
Finally; the night can't go without discussion of those who have passed. This night is dedicated to Jori, Austin, Superman Sam, Amy and the countless number of others who have died from blood cancer.
The LLS funds over 300 active research projects. All with the goal of pushing the cure further.
Donations throughout this 10 week campaign will fund scientists to research, develop target therapy, test immunotherapies and improve the safety of today's cure.
Cure is NOT free. It comes with a high price tag (both literally and figuratively). Cancer steals your sense of security and sometime hope. And when a loved one, friend, coworker or acquaintance dies - a little more of that security and hope disappears.
Tonight we are all here to give that sense of security and hope back to future patients. A cure is NOT free. The only way to advance the cure is through research and clinical trials. This past 10 weeks we have raised $400K that will help fund research and give future patients that security and hope they deserve; and ultimately - a cure.
The past 10 weeks has been about raising money for research. I surpassed my goal of $50K by a lot (grand total will be coming in the next week or so).
I am honor to tell you about an amazing award that I was nominated for (not based on the dollar amount I raised) by my fundraising team - specifically my husband and mother-in-law. It was the Community Involvement Award. I have never received something like this before and it was one of the biggest honors of my life. Ptosha Davis, the mother of Jori (my first AML patient as a nurse practitioner), gave me the award and said the kindest and most moving things I have ever heard. The world lost a bright light the day Jori passed. Her, with all of my other patients and family - drive me to help find a cure. I have no doubt that one day we will get there.
I am very excited to tell you some more news. I LOST the Woman of the Year award. This is a WONDERFUL thing!! That means, someone raised more than me. So much money was raised by all of the candidates! Nearly $400K!!! Just think about the future patients that this will benefit. (It gives me goose bumps thinking about this).
What I am sad about is that I did not get to thank everyone in a public forum. So here it goes; my "thank you":
I need to first thank Dr Carlson and Dr Hari for nominating me. And above everything - curing my husband.
My family would not be intact if it wasn't for the care that the Medical College of Wisconsin provided. The cancer team at Froedtert cured my husband. And the cancer team at Children's Hospital of Wisconsin kept me sane and helped me hold my family and life together.
My team manager, Amber Essenmacher, for all the help given during the past 10 weeks. I am so blessed to have met her and call her a dear friend.
And of course all my team members that helped me raise money: Kevin Brickler, Alli Grady, Kristen Tews, Meghan Belongia, Becky Rusch, Susie Burke, Diane Brickler, Tonya Ureda, Brooke Brickler, Chris Schulta, Phyllis Sommer and Joanna O'Brien. And of course; every single person that donated.
Finally; the night can't go without discussion of those who have passed. This night is dedicated to Jori, Austin, Superman Sam, Amy and the countless number of others who have died from blood cancer.
The LLS funds over 300 active research projects. All with the goal of pushing the cure further.
Donations throughout this 10 week campaign will fund scientists to research, develop target therapy, test immunotherapies and improve the safety of today's cure.
Cure is NOT free. It comes with a high price tag (both literally and figuratively). Cancer steals your sense of security and sometime hope. And when a loved one, friend, coworker or acquaintance dies - a little more of that security and hope disappears.
Tonight we are all here to give that sense of security and hope back to future patients. A cure is NOT free. The only way to advance the cure is through research and clinical trials. This past 10 weeks we have raised $400K that will help fund research and give future patients that security and hope they deserve; and ultimately - a cure.
Monday, April 20, 2015
Guilt
Superman Sam shirts have sold out. What an amazing outpouring of support for these shirts. I have some amazing photos that his mother shared with me. These photos give you a taste of what an amazing boy he was:
I was recently asked to write a letter to request more support for my fundraising campaign. It was a little bit of a challenging request because I feel so much guilt for what Kevin has to endure (and my kids) because of me... I have mentioned this a time or two before - but man, it just doesn't get easier.
I am hopeful that the donations don't continue to slow down. I am hopeful that people will contribute whatever they can - nothing is too little. I am hopeful that someday, leukemia and other blood cancers, will not be a life threatening disease.
I was recently asked to write a letter to request more support for my fundraising campaign. It was a little bit of a challenging request because I feel so much guilt for what Kevin has to endure (and my kids) because of me... I have mentioned this a time or two before - but man, it just doesn't get easier.
I am hopeful that the donations don't continue to slow down. I am hopeful that people will contribute whatever they can - nothing is too little. I am hopeful that someday, leukemia and other blood cancers, will not be a life threatening disease.
I am writing to ask for your support to reach my goal of raising $50,000 by May 15th, 2015 for the Leukemia and Lymphoma Society. This fundraising campaign is going on throughout the nation; whomever raises the most in each state will be named the Woman or Man of the Year.
With that said – I don’t care if I win. But I desperately care if I hit $50,000. Once I hit that dollar amount – I have a say in what type of research the money will go towards. I will be directing this money to AML research. I have focused my entire NP career on pediatric cancer; specifically pediatric AML. I see new families and children diagnosed with leukemia frequently. I see families and children who have relapsed leukemia frequently. I hear the stories of how they thought something was wrong – but never did they think leukemia.
On May 28th, 2013 my husband was diagnosed with blast phase-CML (a cancer similar to AML that behaves and needs to be treated like AML). We met Dr Carlson (Kevin's Oncologist) the first night in the ED before he was transferred to the ICU. He spent weeks in the hospital getting intensive chemotherapy, fighting life threatening infections and getting almost daily blood and platelet transfusions. He unfortunately needed a bone marrow transplant to live that resulted in more intensive chemotherapy, life threatening infections, horrible side effects and daily blood and platelet transfusions. He had a BMT under the supervision of Dr Hari and his team. The process was difficult but was his best chance at survival. Today, as Kevin's recovery is underway, he must take nightly chemotherapy pills. This little pill can push his body’s tolerance limits; but he takes it because he has too.
I can’t believe this happened to us. I still can’t. I am still stuck in the days prior to his diagnosis – never once did leukemia cross my mind. He even said – “what if I have cancer”. I told him to shut the F%$^ up and he didn’t. I was so, so wrong. I didn’t notice the months of symptoms. This is what I do for a living and he almost died from something I did not notice. The amount of guilt and panic I have about this is unreal – it is a soul crushing, self-hating, pure disgust of myself.
This fundraising campaign has given me an outlet. Maybe, if I can reach this $50K mark – I will feel like I have done something. Maybe, this will help me deal with the fact of what I missed. Maybe… Please help me. I am worried that I will not get to $50K. I don’t want to deal with more disappointment in myself. Please consider a donation of money. When you think of an amount – please think of more. Future patients and families are counting on you. This disease is horrible and it destroys lives. Please help me raise this money and advance the cure!
Thursday, April 16, 2015
Life after Transplant
Life after bone marrow transplant hasn't been easy; but he is here - and that is what matters.
Kevin generally has good days but there have been a few bumps along the recovery path.
He still has to take chemotherapy every single night.
This one pill can cause so much destruction. It's scary.
A few months ago Kevin had a really bad week. He was having these head pains - like a stabbing feeling in the back of his head that literally brought him to the floor multiple times a day. It was awful. So awful. I couldn't do anything to make him feel better except stay home with him and the kids and make sure he was safe. He couldn't even bring himself to move for about a week. I was terrified that he had relapsed. I was so scared that there was a mass of leukemia cells in his brain causing this. A few days later he had a CT scan of his brain which was normal and the headaches just stopped.
A month or so after that he started having horrible nights. I would wake up to him moaning and unable to stand up because of the pain he was in. Other nights I would wake up to him projectile vomiting all over the bathroom. All because of this chemo pill that keeps his leukemia away. He needs this pill to live - but sometimes it is hard living taking this pill.
In February we went down to Nassau for my brother's wedding. It was so bad for Kevin. Every night I would lay in bed next to him while he slept and just cry. He had so much belly pain that he couldn't really function. He would try and participate in the festivities but it was hard for him. His body is still at risk for getting infections - and he got one. It took at least two weeks for him to get better.
With every single side effect he gets from his medications or a virus - I am scared that it is a relapse. I know the odds are that it is a side effect of chemo or an infection - but my mind thinks leukemia. I don't think this reaction will ever stop.
There has got to be better treatments for cancer. Research is really the only way to make sure this happens. Everybody who has a cancer diagnosis deserves the chance to enroll onto a clinical trial. Unfortunately, this is not the current reality. Cancer research costs lots and lots of money. A cure is not cheap. Organizations like the Leukemia and Lymphoma Society help to fund research. My fundraising campaign will help future patients. So back to my goal in the next 4 weeks... please consider donating. Please.
http://www.mwoy.org/pages/wi/wi15/mbrickler
Kevin generally has good days but there have been a few bumps along the recovery path.
He still has to take chemotherapy every single night.
This one pill can cause so much destruction. It's scary.
A few months ago Kevin had a really bad week. He was having these head pains - like a stabbing feeling in the back of his head that literally brought him to the floor multiple times a day. It was awful. So awful. I couldn't do anything to make him feel better except stay home with him and the kids and make sure he was safe. He couldn't even bring himself to move for about a week. I was terrified that he had relapsed. I was so scared that there was a mass of leukemia cells in his brain causing this. A few days later he had a CT scan of his brain which was normal and the headaches just stopped.
A month or so after that he started having horrible nights. I would wake up to him moaning and unable to stand up because of the pain he was in. Other nights I would wake up to him projectile vomiting all over the bathroom. All because of this chemo pill that keeps his leukemia away. He needs this pill to live - but sometimes it is hard living taking this pill.
In February we went down to Nassau for my brother's wedding. It was so bad for Kevin. Every night I would lay in bed next to him while he slept and just cry. He had so much belly pain that he couldn't really function. He would try and participate in the festivities but it was hard for him. His body is still at risk for getting infections - and he got one. It took at least two weeks for him to get better.
With every single side effect he gets from his medications or a virus - I am scared that it is a relapse. I know the odds are that it is a side effect of chemo or an infection - but my mind thinks leukemia. I don't think this reaction will ever stop.
There has got to be better treatments for cancer. Research is really the only way to make sure this happens. Everybody who has a cancer diagnosis deserves the chance to enroll onto a clinical trial. Unfortunately, this is not the current reality. Cancer research costs lots and lots of money. A cure is not cheap. Organizations like the Leukemia and Lymphoma Society help to fund research. My fundraising campaign will help future patients. So back to my goal in the next 4 weeks... please consider donating. Please.
http://www.mwoy.org/pages/wi/wi15/mbrickler
Sunday, March 29, 2015
Superman Sam
I will start off by saying that I struggled with this post… Talking
about patients is something that I usually avoid doing – but with his mama’s
support and agreement I am.
Superman Sam. That was his nickname. If you google this you
will find him and his story, his story
that ended too short on December 14, 2013.
I met Sammy and his parents on the HOT unit where I work. He
was just diagnosed with leukemia. Throughout the first few days after he was
diagnosed I figured out what is was about them that was just so amazing – they
were a happy family. Even in the face of a life-threatening disease – Sammy never
stopped playing; his parents never stopped playing with him; his siblings,
uncle, grandparents – never stopped being happy and playing.
Sammy relapsed in early spring of 2013. About two months
prior to Kevin’s diagnosis. I remember that day clearly. A coworker paged me to
tell me he relapsed so I went down to the operating room waiting area to find Phyllis
and her parents (Sammy was getting a bone marrow biopsy to confirm his relapse).
Now let me tell you, these moments suck. Seeing that family that has just finished
months of grueling chemotherapy, infections, etc and knowing it didn’t work.
The leukemia was back. We hugged and I sat with them for a while.
Sammy was a funny, funny kid. Days in the hospital included
arts and crafts, sword fights, hide and go seek, silly string fights, and playing
video games. Gosh – I remember when he was on a McDonalds kick. His parents
would go all the time and bring it back for him because it was the only thing
he wanted to eat (and of course; they would always bring me back a big’ol diet
coke!). Oh this you will all love; those eye stickers; the kinds where the black
of the eyes move around; he put those everywhere in the hospital. In fact, I
just saw his eye stickers on the second floor of the hospital near an
elevator. When I find them – they stop
me in my tracks. The stickers are still here – but he is not.
One of my favorite memories of Sammy was when I would go
into his room every morning to examine him. I would sneakily place my stethoscope
on his chest while he was sound asleep. About 50% of the time he would be
asleep; the other 50% he would lay perfectly still with his eyes closed as if
he was sleeping but jump up, yell and scare me! I definitely screamed a few
times and woke his parents up! (I have a very, very low startle reflex and can
get scared easily!). He would beam with joy whenever he scared me and certainly
reminded me throughout the day that he “got me."
After Kevin was diagnosed it became clear that he would need
a bone marrow transplant; just like Sammy. When the weeks became closer and
closer to the time – it was obvious to me what was going to happen. Both Kevin
and Superman Sam got their bone marrow transplants on the same day. This day
was emotional to say the least. I took off of work that day to be with Kevin.
His nurses at Froedtert were saying that his bone marrow would be given a
little later because there was a bone marrow transplant occurring at Children's
as well. I just looked at his nurse; smiled a very tired smile and said, “I
know." The following days at work were rough. Sam and Kevin were on the same “day." They will always have the same re-birthday.
Sammy’s leukemia came back. He relapsed after his bone
marrow transplant. I won’t even begin to try to describe what his parents went
through… You should follow their blog here: http://supermansamuel.blogspot.com/
The last day I saw Sammy was heartbreaking. He was so
fragile. So tired. And not playing. Myself, Matt (coworker), a few nurses, his
parents and Sammy were all squished into the room. Dr Margolis was coming in
and out and trying to arrange an ambulance to get Sammy home fast so that he
could die there and not in the hospital. I dream of this day a lot (or rather
have nightmares). Nobody should die of this disease. No one. Especially not an
8 year old boy so full of life. Sometimes I fixate on numbers; Sammy’s white blood
cell counts at the time he died was the same as Kevin’s when he was diagnosed.
It is mind-boggling, soul-crushing, wind-knocked-out-of-you-feeling watching a little boy so full of promise, so loved, leave us. I have asked myself why him and why not Kevin. Why does my love get to be here and Phyllis and Michael's boy doesn’t. Cancer, leukemia, it destroys so many things. As a provider; when a patient of mine dies – it affects me every.single.time. It does not get easier. I become used to seeing my patients and their families at work – they are part of my life. When someone dies – it leaves a hole in my life. I can’t tell you how many times I have raced to my car in order to cry alone. I don’t know how to explain it. This just isn’t a job; it is so much more than that.
It is mind-boggling, soul-crushing, wind-knocked-out-of-you-feeling watching a little boy so full of promise, so loved, leave us. I have asked myself why him and why not Kevin. Why does my love get to be here and Phyllis and Michael's boy doesn’t. Cancer, leukemia, it destroys so many things. As a provider; when a patient of mine dies – it affects me every.single.time. It does not get easier. I become used to seeing my patients and their families at work – they are part of my life. When someone dies – it leaves a hole in my life. I can’t tell you how many times I have raced to my car in order to cry alone. I don’t know how to explain it. This just isn’t a job; it is so much more than that.
The reason I have told this long story – is of course due to
my mission. Research is the ONLY way to advance the cure. Research is expensive.
Clinical trials that are run throughout the world, the nation, Children’s
Hospital of Wisconsin, Froedtert are what saves lives. Please help me raise $50K.
I am so honored to be able to sell a piece of Sammy’s artwork. The kid loved to draw! He had amazing drawings all the time. The one that
Phyllis and I choose to sell was a dragon. This is just perfect for my family –
my son loves to pretend he is a dragon or dinosaur all the time and “roars” on
a daily basis. So check out the link; buy some clothes and support a great
mission and get a piece of Sammy’s handiwork.
In loving memory of an amazing boy, Superman Sam!
Friday, March 20, 2015
"My daddy has cancer."
Kevin's cancer diagnosis affected many people; from family to friends - and even strangers.
The two people it probably affected the most were Adele and Crosby. My children's world imploded. They went from having a mom and dad with them all the time to not seeing daddy and only seeing mama for a few hours a day. They were only 2 years old and 7 months old - but they knew something was horribly wrong.
The night Kevin was diagnosed my mom was with the kids. I told her to bring them to the emergency room immediately. Kevin had to emergently have a huge IV placed in his neck to start lowering his life-threatening high white blood cell count. His only request was that he could hold his kids before this IV went in.
Unfortunately - there was no time.
The kids got there when the line was going in. When Adele saw him, he had blood running down his neck and covering his shirt. Crosby was just a baby; he didn't want to go by him and just wanted me to hold him and take him home... Adele was scared. The blood really freaked her out... It was devastating.
The first time I got back home with the kids - my sister and brother-in-law were over with their two small kids. Adele and Brayden were sitting at the table and talking about their daddies. I forgot what Brayden said - but Adele responded, "My daddy has cancer." That ripped my heart out. Why the f$#% should she even know that word at 2 years old! Tears started flowing immediately.
There were only a few times that Adele visited Kevin in the hospital (and even fewer with Crosby). Every visit ended in her crying hysterically and holding onto Kevin with a death grip and me peeling her off of him. People literally just stared at us. When Crosby would visit - he was afraid of his daddy and didn't want to go by him - heartbreaking... He didn't come to the hospital much because of this.
We tried a few video chats with daddy but that never seemed to go well and Adele was always so upset afterwards because she missed him so much!
I tried to keep their life as normal as possible - but it wasn't. I would come home from work, feed them, put them in bed and leave to sleep at the hospital while my mom, mother-in-law or brothers would stay here with them. Every night I left - Adele asked me not too. They both had special mama and daddy bears that they slept with when we were both gone at night... They clung to them every single night. I literally had to choose between leaving Adele and Crosby or leaving Kevin alone in the hospital. It was always an impossible choice and my heart was always broken because of it.
The BMT admission was the hardest. There are no kids allowed on this unit. Kevin went 6 weeks without seeing his kids. We tried the video chatting but that again always ended in tears. And frankly - Kevin just felt to shitty to even talk. We once drove by the hospital and slowed down while Kevin waved from his room window. Adele saw him and almost cried she was so excited!
Needless to say - our kids are still affected by this. Adele gets nervous every time someone is ill. She gets especially nervous and asks if daddy will have to go back into the hospital when he is sick. I tell her no; but I know damn well I could be lying... Leukemia is sneaky - it relapses. People die every day from this disease.
Without research - without money - without clinical trials -- Adele and Crosby would not have their daddy here.
SO back to my mission - give me a donation.
When you think of an amount - give me more.
Many other children don't want to lose their daddy.
http://www.mwoy.org/pages/wi/wi15/mbrickler
The two people it probably affected the most were Adele and Crosby. My children's world imploded. They went from having a mom and dad with them all the time to not seeing daddy and only seeing mama for a few hours a day. They were only 2 years old and 7 months old - but they knew something was horribly wrong.
The night Kevin was diagnosed my mom was with the kids. I told her to bring them to the emergency room immediately. Kevin had to emergently have a huge IV placed in his neck to start lowering his life-threatening high white blood cell count. His only request was that he could hold his kids before this IV went in.
Unfortunately - there was no time.
The kids got there when the line was going in. When Adele saw him, he had blood running down his neck and covering his shirt. Crosby was just a baby; he didn't want to go by him and just wanted me to hold him and take him home... Adele was scared. The blood really freaked her out... It was devastating.
The first time I got back home with the kids - my sister and brother-in-law were over with their two small kids. Adele and Brayden were sitting at the table and talking about their daddies. I forgot what Brayden said - but Adele responded, "My daddy has cancer." That ripped my heart out. Why the f$#% should she even know that word at 2 years old! Tears started flowing immediately.
There were only a few times that Adele visited Kevin in the hospital (and even fewer with Crosby). Every visit ended in her crying hysterically and holding onto Kevin with a death grip and me peeling her off of him. People literally just stared at us. When Crosby would visit - he was afraid of his daddy and didn't want to go by him - heartbreaking... He didn't come to the hospital much because of this.
We tried a few video chats with daddy but that never seemed to go well and Adele was always so upset afterwards because she missed him so much!
I tried to keep their life as normal as possible - but it wasn't. I would come home from work, feed them, put them in bed and leave to sleep at the hospital while my mom, mother-in-law or brothers would stay here with them. Every night I left - Adele asked me not too. They both had special mama and daddy bears that they slept with when we were both gone at night... They clung to them every single night. I literally had to choose between leaving Adele and Crosby or leaving Kevin alone in the hospital. It was always an impossible choice and my heart was always broken because of it.
The BMT admission was the hardest. There are no kids allowed on this unit. Kevin went 6 weeks without seeing his kids. We tried the video chatting but that again always ended in tears. And frankly - Kevin just felt to shitty to even talk. We once drove by the hospital and slowed down while Kevin waved from his room window. Adele saw him and almost cried she was so excited!
Needless to say - our kids are still affected by this. Adele gets nervous every time someone is ill. She gets especially nervous and asks if daddy will have to go back into the hospital when he is sick. I tell her no; but I know damn well I could be lying... Leukemia is sneaky - it relapses. People die every day from this disease.
Without research - without money - without clinical trials -- Adele and Crosby would not have their daddy here.
SO back to my mission - give me a donation.
When you think of an amount - give me more.
Many other children don't want to lose their daddy.
http://www.mwoy.org/pages/wi/wi15/mbrickler
Tuesday, March 17, 2015
Bone Marrow Transplant
Getting ready for Kevin's bone marrow transplant (BMT) admission was heart-breaking (and rereading my caringbridge posts are bringing me to tears tonight). I know that people go into BMT in good shape but can have awful side effects and even death. Don't get me wrong - many, many people survive BMT and live long healthly lives, but I relived every patient death and every possible scerino of what could go wrong.
The weeks prior to BMT I lost a lot of weight. It was hard to me to wrap my mind around what had to happen... I vomited almost daily thinking about what had to happen in order for him to live. I vomited almost daily because I know this could have been prevented. The type of leukemia Kevin has includes three phases. It is incredibly rare to be diagnosed in the phase he was in. In fact - in blast crisis - his leukemia behaved like acute myeloid leukemia. Every since time he is ill or has any side effect - I spiral out of control. I just can not get past the fact that if I had noticed one fricking thing about my husband before he was diagnosed in this phase - he likely would have not needed a BMT. So when he has horrible nights of nausea, vomiting, headaches, etc... I become more and more disgusted with my absolute inability to tell something was wrong before it turned into a medical emergency.
So we tried to jam-pack a lot of family time and fun (and also estate planning...) before admission. We even had a big party with our closest friends just to see everyone prior to BMT. It was a fun night - but of course - I thought a million times - this could be the last time he sees them.
Thank GOD he was discharged from BMT and overall has been doing great.
But again - all of the bumps along the way just twist that knife deeper into my heart... It could have and should have been prevented...
So here are some posts from our CB page during the BMT process:
My nerves are starting to get the best of me the closer we get to transplant. I can not get over or accept this reality. Kevin has CML. CML has 3 phases. Chronic, accelerated, and blast crisis. Kevin was diagnosed in "blast crisis." This is one leukemia that timing of diagnosis does matter. If Kevin was diagnosed in "chronic" or "accelerated" phase he would have been treated with oral chemotherapy alone. There still would have been a possibility of transplant if he failed the oral chemo but most CML patients don't require a transplant UNLESS they are diagnosed in blast crisis.
This is my reality.
When he was first diagnosed, the shock of him having "AML" was unbelievable. When I found out his chromosomes on his leukemia cells actually classified him as CML I lost it. A fellow (oncologist-in-training) told us in his ICU room. I held it together in the room and then followed her out in the hallway. And lost it. I mean, I really lost it. I think she had to hold me up. Two freaking phases of CML that oral chemo could have worked.
My husband, who lives with someone who studies, lives and breathes leukemia at work, failed him. I failed my children, our families, and friends. I have messed up a lot of things in my life but there are no words, absolutely none, that can explain my devastation and heartbreak and self-hatred. The closer we get to transplant, the more I think about this. Please don't tell me not to - it doesn't help. I don't want him to go through this.
I generally get through the day by faking it. I wake up, put make-up on, get dressed, and interact with people. These emotions come waves. For example, I will be in a meeting at work and all of the sudden be fighting back tears. I think about just getting up and leaving the room -but I generally can get through the day. My drive home is when I relive everything on a daily basis. I generally try and call people when I am driving home as a distraction from my thoughts. That works sometimes. I recently started getting into Johnny Cash's music.. this might explain some of my demeanor... I truly feel better and less overall "panicked" when I am with Kevin. Just being with him calms me and overall just makes me feel better. This is one reason (of many) that we fit so perfectly together.
Before he went in we had a family photo session. It was amazing and brings me to tears watching this photo montage. (password: Brickler)
From the day before transplant:
I did not realize that knowing the date of BMT admission and getting closer to that date would make me a mess. I don't want to fall asleep at night because I want to make the most of our time at home. I don't want to sleep at night because all I do is have nightmares. It's kind of ridiculous, because on the flip side, I am as equally as nervous that the longer we wait for transplant the more of a chance we give his leukemia to come back.
Kevin tolerated the first couple of days of his chemotherapy pretty good. He was eating, drinking, walking around a lot, etc... Unfortunately today that changed. I left around 9am this morning to spend some time with Crosby and Adele. When I came back he looked like he felt like shit. He is having some nausea (no vomiting yet) and headaches. The chemo he is currently getting (Cytoxan) can cause bleeding of the bladder (hemorrhagic cystitis). So because of this he gets a lot of intravenous fluids with the goal of flushing out his bladder frequently to hopefully prevent hemorrhagic cystitis. Unfortunately he wasn't making enough urine so he needed something called Lasix (medication to make you urinate). After that he was up a lot going to the bathroom! Timing of the medication sucked because he gets really nauseous and his headache is worse when he stands up....
This is hell on earth. Kevin never complains about feeling bad. The only time he has ever complained about being sick is 3 months ago when he was diagnosed with leukemia. So I imagine that his nausea and headache and overall shitty feeling is 20x worse than he is letting on. I hate feeling so helpless and not being able to make him feel better... I hate this.
Tomorrow is a pretty major day in Kevin's life. He will get his bone marrow transplant. The "cells" will be arriving via a flight from Germany into Chicago. They will then be driven to FMLH and processed. His transplant will be sometime in the afternoon/evening. It is very anticlimactic. They will give him some pre-medications so he hopefully doesn't have an allergic reaction to the cells. They are infused over an hour or so into the permanent IV he has. There are no pokes or procedures for Kevin. Just an infusion that will become his new functioning immune system.
Kevin was diagnosed on May 28th and will receive a bone marrow transplant on August 27th. One day short of 3 months. Amazing.
People keep asking me if I am excited for tomorrow. I am happy that we have gotten to this point. There are people with leukemia who unfortunately never make it to transplant. Whether its because their disease didn't respond to chemo or they have bad infections or their bodies are in overall bad shape. Thankfully - that is not Kevin. But am I happy that he is getting a BMT? Nope, never. Am I excited that he is getting a BMT? Nope, never. It still makes me physically ill that this is happening and I still (and will always) hate myself.
After BMT, a few days later...
...Kevin's counts have officially bottomed out. He has needed platelet transfusions and blood transfusions for the past two days. He will continue to need frequent transfusions because his body is not able to make platelets and blood. One of the many things that sucks about that is that they wake him up at 4am to start the transfusions...
Overall I think his belly pain is getting better. We were able to stop his IV antibiotic and now he just continues on 2 oral antibiotics. One to treat his c-diff and one as a prophylactic medication to hopefully prevent infections. He is also on an antiviral and antifungal prophylaxis to hopefully prevent these types of infections. (And a boatload of other medications as well).
He is saying that his mouth and throat are starting to become sore - mucositis. I am praying that it isn't horrible for him.
This weekend went by fast. I actually left Kevin for more than 24 hours. I took Adele and Crosby home after dinner on Sunday night and spent the entire day together. We played, went on a pontoon boat ride, and had a lot of fun. As hard as all of this is on us - it has to be 20 times worse for Adele and Crosby. Not only are they not able to see their daddy - they don't get me as much either. Thinking about what Adele and Cros must think/feel makes me so sad - actually "sad" doesn't express the amount of despair/anxiety/failure that I feel about this. I literally have to choose between being with Kevin and being with Adele and Crosby. Every decision I make leaves someone alone. H.E.L.L. I constantly think about them waking up at night and crying for me, waking up from their nap looking for me, wanting to play with me, etc...
Don't get me wrong - I am eternally grateful to all of my family for taking them. I never have to be worried that they aren't getting the love they need because they are basically with either my parents, brother or Kevin's mom. But - I miss them. My heart aches when I leave them. I don't know if I make the right decisions about leaving them and being with Kevin or being with them and leaving Kevin. I frequently second-guess all of my decisions and pray so hard that I am not royally screwing up our children. So I again will apologize to those I love the most - I don't mean to be a b*%^&, and short with people, and rude. I just don't know how to do "this" very well.
Another excerpt, a few days later:
...Kevin had a rough 24 hours. He started having throat and mouth pain (mucositis) 2 days ago. Last night it was pretty bad. We didn't get much sleep at all. Although - he wanted to hold hands (which I love) and I was able to sleep for a little bit while holding his hand.
He continues to be my rock and my heart, as always.
He really isn't able to swallow his own saliva at all and has a suction catheter hooked up to his bed that he spits in. Eating and drinking is also not happening. So because of that he was started on something called total parenteral nutrition (TPN) that will give him nutrition through his IV. The majority of his medications have all been switched to IV because of the pain he is having and the concern that he wouldn't absorb anything he took by mouth. Mucositis affects mucus membranes. So basically from your lips down to your anus. So presumably the sores he has in his mouth and throat are also in his stomach. Because of this people are not able to absorb medications and food. Whenever he attempts to swallow his whole body cringes and it looks like he wants to scream in pain. He also has stopped talking for the most part because of the pain. His voice sounds different when he speaks which isn't surprising. Because of all of the pain he is in he was started on narcotics and is getting morphine through a continuous infusion into his IV. He is also able to push a button that is hooked up to his IV machine that gives him extra morphine (this is called a PCA). The morphine has seemed to help a little but he still is having trouble with swallowing and talking.
But, I am hopeful that his counts will continue to rise at a good pace and that he will soon be able to come home.
Adele has had a rough time with this round. She asks me a lot about going to see daddy and when he will be coming home. Any answer I give her isn't what she wants to hear.
This will never end. Leukemia will forever be part of my family. What I would give for my life 5 months ago. I get mad and jealous of "normal" people and their lives. I only wish my biggest problems would be about working late, having a baby that doesn't sleep, a messy house, bills, etc... I really can't explain to you what this is like.
And then finally, home again:
Home sweet home! Adele and Crosby were so excited to see their daddy. We got home during their naps. When they woke up and saw him sitting in the recliner they had the biggest smiles!!
We had our first clinic appointment today. Kevin is still having problems eating and drinking. He continues to have intermittent stomach cramping and nausea. I was quite shocked with how much he weighed. He probably lost about 25 pounds from his admission weight. It is VERY challenging to get him to eat anything. He literally had a granola bar and a 1/4 of a english muffin today. You can imagine how unpleased I am with this. He isn't able to drink well due to nausea/stomach ache/nothing tasting good so he now gets fluids through his IV at home. Getting that all hooked up and the IV pole all set up with both kids was a bit challenging. But all went well and "Mike the Machine" gave daddy his medicine.
Here our some photos of his BMT room at FMLH. My chair that I slept in every night is right next to his bed. And of course - huge pictures of our family were everywhere in the room!
The weeks prior to BMT I lost a lot of weight. It was hard to me to wrap my mind around what had to happen... I vomited almost daily thinking about what had to happen in order for him to live. I vomited almost daily because I know this could have been prevented. The type of leukemia Kevin has includes three phases. It is incredibly rare to be diagnosed in the phase he was in. In fact - in blast crisis - his leukemia behaved like acute myeloid leukemia. Every since time he is ill or has any side effect - I spiral out of control. I just can not get past the fact that if I had noticed one fricking thing about my husband before he was diagnosed in this phase - he likely would have not needed a BMT. So when he has horrible nights of nausea, vomiting, headaches, etc... I become more and more disgusted with my absolute inability to tell something was wrong before it turned into a medical emergency.
So we tried to jam-pack a lot of family time and fun (and also estate planning...) before admission. We even had a big party with our closest friends just to see everyone prior to BMT. It was a fun night - but of course - I thought a million times - this could be the last time he sees them.
Thank GOD he was discharged from BMT and overall has been doing great.
But again - all of the bumps along the way just twist that knife deeper into my heart... It could have and should have been prevented...
So here are some posts from our CB page during the BMT process:
My nerves are starting to get the best of me the closer we get to transplant. I can not get over or accept this reality. Kevin has CML. CML has 3 phases. Chronic, accelerated, and blast crisis. Kevin was diagnosed in "blast crisis." This is one leukemia that timing of diagnosis does matter. If Kevin was diagnosed in "chronic" or "accelerated" phase he would have been treated with oral chemotherapy alone. There still would have been a possibility of transplant if he failed the oral chemo but most CML patients don't require a transplant UNLESS they are diagnosed in blast crisis.
This is my reality.
When he was first diagnosed, the shock of him having "AML" was unbelievable. When I found out his chromosomes on his leukemia cells actually classified him as CML I lost it. A fellow (oncologist-in-training) told us in his ICU room. I held it together in the room and then followed her out in the hallway. And lost it. I mean, I really lost it. I think she had to hold me up. Two freaking phases of CML that oral chemo could have worked.
My husband, who lives with someone who studies, lives and breathes leukemia at work, failed him. I failed my children, our families, and friends. I have messed up a lot of things in my life but there are no words, absolutely none, that can explain my devastation and heartbreak and self-hatred. The closer we get to transplant, the more I think about this. Please don't tell me not to - it doesn't help. I don't want him to go through this.
I generally get through the day by faking it. I wake up, put make-up on, get dressed, and interact with people. These emotions come waves. For example, I will be in a meeting at work and all of the sudden be fighting back tears. I think about just getting up and leaving the room -but I generally can get through the day. My drive home is when I relive everything on a daily basis. I generally try and call people when I am driving home as a distraction from my thoughts. That works sometimes. I recently started getting into Johnny Cash's music.. this might explain some of my demeanor... I truly feel better and less overall "panicked" when I am with Kevin. Just being with him calms me and overall just makes me feel better. This is one reason (of many) that we fit so perfectly together.
Before he went in we had a family photo session. It was amazing and brings me to tears watching this photo montage. (password: Brickler)
From the day before transplant:
I did not realize that knowing the date of BMT admission and getting closer to that date would make me a mess. I don't want to fall asleep at night because I want to make the most of our time at home. I don't want to sleep at night because all I do is have nightmares. It's kind of ridiculous, because on the flip side, I am as equally as nervous that the longer we wait for transplant the more of a chance we give his leukemia to come back.
Kevin tolerated the first couple of days of his chemotherapy pretty good. He was eating, drinking, walking around a lot, etc... Unfortunately today that changed. I left around 9am this morning to spend some time with Crosby and Adele. When I came back he looked like he felt like shit. He is having some nausea (no vomiting yet) and headaches. The chemo he is currently getting (Cytoxan) can cause bleeding of the bladder (hemorrhagic cystitis). So because of this he gets a lot of intravenous fluids with the goal of flushing out his bladder frequently to hopefully prevent hemorrhagic cystitis. Unfortunately he wasn't making enough urine so he needed something called Lasix (medication to make you urinate). After that he was up a lot going to the bathroom! Timing of the medication sucked because he gets really nauseous and his headache is worse when he stands up....
This is hell on earth. Kevin never complains about feeling bad. The only time he has ever complained about being sick is 3 months ago when he was diagnosed with leukemia. So I imagine that his nausea and headache and overall shitty feeling is 20x worse than he is letting on. I hate feeling so helpless and not being able to make him feel better... I hate this.
Tomorrow is a pretty major day in Kevin's life. He will get his bone marrow transplant. The "cells" will be arriving via a flight from Germany into Chicago. They will then be driven to FMLH and processed. His transplant will be sometime in the afternoon/evening. It is very anticlimactic. They will give him some pre-medications so he hopefully doesn't have an allergic reaction to the cells. They are infused over an hour or so into the permanent IV he has. There are no pokes or procedures for Kevin. Just an infusion that will become his new functioning immune system.
Kevin was diagnosed on May 28th and will receive a bone marrow transplant on August 27th. One day short of 3 months. Amazing.
People keep asking me if I am excited for tomorrow. I am happy that we have gotten to this point. There are people with leukemia who unfortunately never make it to transplant. Whether its because their disease didn't respond to chemo or they have bad infections or their bodies are in overall bad shape. Thankfully - that is not Kevin. But am I happy that he is getting a BMT? Nope, never. Am I excited that he is getting a BMT? Nope, never. It still makes me physically ill that this is happening and I still (and will always) hate myself.
After BMT, a few days later...
...Kevin's counts have officially bottomed out. He has needed platelet transfusions and blood transfusions for the past two days. He will continue to need frequent transfusions because his body is not able to make platelets and blood. One of the many things that sucks about that is that they wake him up at 4am to start the transfusions...
Overall I think his belly pain is getting better. We were able to stop his IV antibiotic and now he just continues on 2 oral antibiotics. One to treat his c-diff and one as a prophylactic medication to hopefully prevent infections. He is also on an antiviral and antifungal prophylaxis to hopefully prevent these types of infections. (And a boatload of other medications as well).
He is saying that his mouth and throat are starting to become sore - mucositis. I am praying that it isn't horrible for him.
This weekend went by fast. I actually left Kevin for more than 24 hours. I took Adele and Crosby home after dinner on Sunday night and spent the entire day together. We played, went on a pontoon boat ride, and had a lot of fun. As hard as all of this is on us - it has to be 20 times worse for Adele and Crosby. Not only are they not able to see their daddy - they don't get me as much either. Thinking about what Adele and Cros must think/feel makes me so sad - actually "sad" doesn't express the amount of despair/anxiety/failure that I feel about this. I literally have to choose between being with Kevin and being with Adele and Crosby. Every decision I make leaves someone alone. H.E.L.L. I constantly think about them waking up at night and crying for me, waking up from their nap looking for me, wanting to play with me, etc...
Don't get me wrong - I am eternally grateful to all of my family for taking them. I never have to be worried that they aren't getting the love they need because they are basically with either my parents, brother or Kevin's mom. But - I miss them. My heart aches when I leave them. I don't know if I make the right decisions about leaving them and being with Kevin or being with them and leaving Kevin. I frequently second-guess all of my decisions and pray so hard that I am not royally screwing up our children. So I again will apologize to those I love the most - I don't mean to be a b*%^&, and short with people, and rude. I just don't know how to do "this" very well.
Another excerpt, a few days later:
...Kevin had a rough 24 hours. He started having throat and mouth pain (mucositis) 2 days ago. Last night it was pretty bad. We didn't get much sleep at all. Although - he wanted to hold hands (which I love) and I was able to sleep for a little bit while holding his hand.
He continues to be my rock and my heart, as always.
He really isn't able to swallow his own saliva at all and has a suction catheter hooked up to his bed that he spits in. Eating and drinking is also not happening. So because of that he was started on something called total parenteral nutrition (TPN) that will give him nutrition through his IV. The majority of his medications have all been switched to IV because of the pain he is having and the concern that he wouldn't absorb anything he took by mouth. Mucositis affects mucus membranes. So basically from your lips down to your anus. So presumably the sores he has in his mouth and throat are also in his stomach. Because of this people are not able to absorb medications and food. Whenever he attempts to swallow his whole body cringes and it looks like he wants to scream in pain. He also has stopped talking for the most part because of the pain. His voice sounds different when he speaks which isn't surprising. Because of all of the pain he is in he was started on narcotics and is getting morphine through a continuous infusion into his IV. He is also able to push a button that is hooked up to his IV machine that gives him extra morphine (this is called a PCA). The morphine has seemed to help a little but he still is having trouble with swallowing and talking.
But, I am hopeful that his counts will continue to rise at a good pace and that he will soon be able to come home.
Adele has had a rough time with this round. She asks me a lot about going to see daddy and when he will be coming home. Any answer I give her isn't what she wants to hear.
This will never end. Leukemia will forever be part of my family. What I would give for my life 5 months ago. I get mad and jealous of "normal" people and their lives. I only wish my biggest problems would be about working late, having a baby that doesn't sleep, a messy house, bills, etc... I really can't explain to you what this is like.
And then finally, home again:
Home sweet home! Adele and Crosby were so excited to see their daddy. We got home during their naps. When they woke up and saw him sitting in the recliner they had the biggest smiles!!
We had our first clinic appointment today. Kevin is still having problems eating and drinking. He continues to have intermittent stomach cramping and nausea. I was quite shocked with how much he weighed. He probably lost about 25 pounds from his admission weight. It is VERY challenging to get him to eat anything. He literally had a granola bar and a 1/4 of a english muffin today. You can imagine how unpleased I am with this. He isn't able to drink well due to nausea/stomach ache/nothing tasting good so he now gets fluids through his IV at home. Getting that all hooked up and the IV pole all set up with both kids was a bit challenging. But all went well and "Mike the Machine" gave daddy his medicine.
Here our some photos of his BMT room at FMLH. My chair that I slept in every night is right next to his bed. And of course - huge pictures of our family were everywhere in the room!
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