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.

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!

~m

http://teespring.com/leukemia-lymphoma-society

 

"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

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!

Back on Chemo

Well the good news is that Kevin is no longer neutropenic (low WBC) and his platelets are back up! He is still having intermittent belly issues and but they have gotten way better.

So after a few days of holding his chemotherapy he restarted it two nights ago. That went AWFUL! Around 4 am he woke up and just puked his brains out. Last night he was just nauseous as heck - but kept the chemotherapy down. So hopefully tonight will bring a little less nauseas and some good rest for him.

Every stage of leukemia treatment has its challenges. Some days appear to be as bad as when he was getting IV chemo. One little pill can cause so much damage to a person... We are still waiting to get the results of his special test looking for leukemia cells. I am hopeful that I will have the results tomorrow. I am always nervous to call and get the results because our world could implode again.

Distraction is great - and this Leukemia fundraiser has become to mean so much to me. More than I thought... I can't tell you how badly I want to raise the $50,000. I want to make an IMPACT. I want to be able to donate this money to AML research. So - please keep spreading the word.

One fun way to participate in this fundraising campaign is actually coming to the Gala. This is the finale party that the Pfister on May 16th, 2015, from 5pm-10pm. The cocktail reception (black tie event) and silent auction will be a blast. I would love to share the evening with all of you!  It will be amazing. You can easily purchase tickets to this event on my page: http://www.mwoy.org/pages/wi/wi15/mbrickler

I recommend buying a table. The price tag is $2,000. This includes: 8 seats, a bottle of champagne, a Grand Finale Gala Program listing (you can list a company, person's name, whatever you would like to promote), and of course the knowledge that your generous donation is advancing the cure!

~m

P.S. This picture makes me smile. Our family fits together so perfectly.

Day 3 of the LLS Campaign

The LLS "Man/Woman of the Year" Campaign kicked off this past Thursday.

There was a kick off party downtown at the Pfister. It was pretty awesome. I didn't really realize that I was suppose to give a speech though... I was imaging that all the nominees would go on stage and say who they are. I was a little off on that.

After the first few amazing candidates for the Man/Woman of the Year spoke I was called to the stage. It was a bit nerve-racking as I was going to wing my kick-off speech! Yikes! So I did and I can't believe I made it without sobbing... #winning.

The people who spoke before me talked about all of the wonderful survivors of leukemia, lymphoma, and myeloma. And truly - patients go to hell and back. There families go to hell and back. Kevin went through hell and back. And my family went through hell and back. I am still stuck in hell; haven't made it back yet... And seriously, this kick-off party comes at a time that I am truly worried about Kevin. I am terrified that his low platelet count, low white blood cell count, and low ANC is not because of a virus (although it most likely is) but because this bastard of a disease is back. And well all know how good I am at waiting - NOT AT ALL!

So, I couldn't help but have a slightly different tone to my speech. The cancer world has a lot of success stories and the number of the success stories continue to increase (thank GOD). But there is the uncomfortable part, the devastating part, the soul-crushing, unable-to-breathe part of the cancer world that people do not like to talk about. DEATH. People die from this disease. People of all ages. Infants less than 1 year old, toddlers, school-age children, teenagers, young adults, adults, old adults. And guess what - death does not discriminate. Does not matter what race you are. Does not matter if you are rich or poor. Does not matter if you have a college education or not. It happens. I have attended more funerals of my patients than I care to talk about. I have spoken at my patients' funerals. I have cried with parents, wives and husbands about the loss of their world. I have raced to my car from work so I could sob in private. I have cried in the shower. I cry a lot when I am alone and driving. Cancer sucks. There is no way around that. Cancer kills. This has to stop.

What I told the poor people who had to listen to my very uplifting speech (not) is that we have work to do. People are still dying. Children are dying. Husbands are dying. Wives are dying. Friends are dying. It needs to end. A cure needs to be found. A cure that doesn't result in debilitating side effects. There is so much work to be done. So much.

I told everyone that I do not care if I win this competition. And that is the truth; I don't.

I care about raising $50,000.

I would have the honor of saying what type of research this money would be funding. AML (acute myeloid leukemia) needs research. This is what I will choose. AML. I have lost too many people to this disease.

I want it to stop. So - PLEASE help me. Help me feel like I have made a difference. I need to raise 50K; I really, really need to feel like I have made an IMPACT to the cure. Please consider donating... I beg you; please.

~molly
http://www.mwoy.org/pages/wi/wi15/mbrickler

Leukemia and Lymphoma Society - Woman of the YEAR!

You have got to check out my web page.
I can't believe the fundraising starts tomorrow.

My goal is simple. Raise 50K in 10 weeks. Piece of cake - right? ;)
I believe that EVERY patient should be given the chance to enroll on a clinical trial. Research through clinical trials is the ONLY way to advance a cure.

Please, please help me accomplish my goal.
Spread the word to whomever you talk to, email, tweet, snapchat, etc...

Let's make and IMPACT on the cure!

http://www.mwoy.org/pages/wi/wi15/mbrickler

Part 1: Diagnosis and The Beginning

I will try to summarize almost 2 years in my first blog ever!

Part 1: Diagnosis and 1st round of chemotherapy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Kevin was diagnosed with Chronic Myeloid Leukemia - blast crisis on May 28th, 2013.

A few days prior to his diagnosis he had complaints of severe headaches and abdominal pain. We ended up in the Emergency Department. The first night, a CT of his head was done which was normal; so they gave him a bunch of fluids and pain medications and we went home.

The next day we attempted to go see his primary care doctor. She took one look at Kevin and sent him to the ED because of the amount of abdominal pain he was having. In the ED, blood work was drawn. Shortly after that, an ED doctor came in to tell us the news that has changed our lives.

Kevin has leukemia.

My strong, beautiful, loving, big hearted husband has leukemia. Even though I work in oncology, and specifically focus in leukemia - I missed this, I missed every symptom he was having. When he was diagnosed it was an oncological emergency. He had multiple IVs placed everywhere (arm, neck, hands), was transferred to the ICU and began treatment immediately. Soul-crushing fear, devastation, guilt, and panic began that day in ED and has continued to be with me on a daily basis.

After about 3 days in the ICU we were moved to the oncology floor. The waiting game began. Kevin was good about being patient and waiting. I was not. So with the amount of caffeine I took in and "waiting" --- it was interesting.

The reason we had to stay inpatient is INFECTION! If people were sick - they could not come and visit. Our children were very young when he was diagnosed (Adele = 2 years old and Crosby = 7 months old) so the brief amount of time they could visit was precious to us.

An journal entry from May 30, 2013:
Reality has begun to set in.
1. Got to his room today before he was wheeled down from ICU. It hit me hard. This is where we are stuck for the foreseeable future. I want him home. I don't want this.
2. Adele said the words "Daddy has cancer." This killed me. She should not know that word. 
Again, I want him home. I don't want this.
Please pray a special prayer for Adele and Crosby tonight.
On the positive side - he is my rock. I told him I was scared - he said he wasn't and that things are already heading in the right direction. He is right, they are.

A few days later:
Today was a good day. A friend stopped by and brought us lunch (thks Tonya!). It was nice not to eat hospital food for a meal. Later in the afternoon Adele came up to visit and we popped some popcorn and watched the "Bee Movie." She seemed to enjoy herself and playing with Daddy's bed. My awesome coworkers sent a great gift basket that included some stuff for her - which she loved (thanks everyone!). My parents brought Crosby up for a little bit as well. It's tough with him because all he wants to do is get on the floor and crawl around. And since hospital floors are disgusting - he will not be doing that! But it was fabulous holding and cuddling him. 

When it was time for them to leave Adele had a hard time leaving - which was heartbreaking. I hate seeing her cry. Afterwards, Kevin and I walked down to the cafeteria and I got some dinner. We had a "date night" eating outside on the patio. It was nice to be outside together and breathe the fresh air. He has to wear a mask now whenever he leaves the oncology unit. I hate that but he doesn't seem to mind.

About two weeks into chemo he began his oral chemotherapy (Dasatinib).
A entry from June 1, 2013:
Today he also began he oral chemo called Dasatinib. He will be on this for the next 20 days. The goal for his treatment is to complete this 4-6 week period inpatient. His day 14 bone marrow evaluation WILL NOT show leukemia and he WILL be in remission after this 4-6 week period. 

Following this he will need a bone marrow transplant. His brother Brian will be worked-up to see if he is a match. He has a 1 in 4 chance of matching Kevin. If he is not, they will look on the national donor website and find him one.

Today we cuddled in his bed and he took a nap - I loved that. He was so peaceful. When I watched him sleep I just couldn't help but cry. He looked so well and healthy. I just can't wrap my mind around that this is actually happening. I am trying to make sense of this all. And I can't. I just can't. I am so pissed off and sad and desperate and scared shitless. I find myself fighting back tears multiple times a day. 

But Kevin - he isn't fazed at all. He is my rock. It's so backwards. I should be his rock. Tonight is my first night away from him. This is hard. Very hard. His side of the bed is as it always is. I can't wait until he is home. I love being with Adele and Crosby but I HATE being away from him. Taught Adele a new prayer tonight "Dear Jesus, please heal my daddy and make him better. I love him. Amen."

How can God not listen to a request like that from a girl like Adele?!? This will be a long night. I can't wait for the morning so I can get the kids ready and go to him. Praying that I dream about my guy tonight.

Our family time was limited to short visits during his first hospital stay. Our dinners in the cafeteria were odd. He had to wear a mask when he left his unit; he took his mask off to eat and for a second it just seemed as we where a normal, healthy family eating lunch together in a weird-ass restaurant where IV poles and scrubs are the normal.

It took me awhile to actually write how his diagnosis really, really affected me. Here is what I wrote the same day as our dinner with the kids:

So this week has been hell on earth for me. I feel like I am losing my frickin mind. I don't know when this will all become my "normal" but it hasn't happened yet. I have been short with the people I love the most in the world; I apologize for that and apologize for the future times when I continue to do that. I stare at the calendar and think; alright 1 week ago we where doing this... (last week we where in the ED because of his headaches) and now we are here. 

Never ever ever would I have imagined this was the cause of his headache and abd pain. It's so hard for me to talk about the fact that I didn't notice my own husband had leukemia let alone forgive myself. This is my job. Leukemia. Cancer. I hear stories like his all the time at work. And somehow this happened. Somehow it didn't even cross my mind. Devastation doesn't even begin to describe how I feel about this.

The days visiting daddy were hard on Adele. She didn't really understand what was happening. All she knew was the she missed him at home. She memorized what elevator we took to his floor and what room number his bed was in. Leaving him was always hard for her. She cried a lot and so did I. She was just to young to understand it. It was always awful saying goodbye to daddy. She sobbed, I sobbed, and people in the lobby and hallways just stared... UGH!

When I went back to work I was a bit of a zombie (looked like one and acted like one). I actually drew huge hearts on his hospital window so when I was walking back and forth between meetings I could see his room!

Our days at home without him were hard. Things were missing from our home that I took to the hospital. The walls didn't have photos on them, pillows and blankets were missing. Our home was not complete - just as I was without Kevin by me.

I had a few meltdowns during this time. One was when I was trying to install car seats. I freaked out because I couldn't get them in - this was Kevin's job; he always did this stuff and now I had to. It just reminded me how awful this was without him and how I couldn't do "life" without him by my side.

The night prior to a big procedure looking to see how he responded to chemo I wrote:
I really don't know what to say tonight. Nervousness doesn't describe what I feel about tomorrow. When I think about it and the weeks to come I can barely breathe. He continues to be my rock. And we continue to laugh and smile and love. And the fact remains that I am hopeful that his marrow will be what we want. My friend told me tonight not to worry about the statistics as he is his own statistic. It's good advice. Thanks, Matt.

Thankfully he had no evidence of his leukemia at that point!

He quickly developed a horrible side effect from chemo called mucositis: horrible painful mouth sores. After this he developed fevers and an infection. He required IV pain medications and antibiotics. He required multiple CT scans looking for a source of infection.

During one of his CTs that found a big spleen. I wrote:
The abnormal finding on the CT scan that has made me numb is that his spleen is big. This is called splenomegaly. When he was diagnosed his spleen was really big because it was full of leukemia cells. Fevers can be caused by leukemia. The aches and pains he is currently having can be caused by his leukemia. My heart that is breaking is caused by his leukemia.

He will be having another bone marrow aspirate and biopsy tomorrow morning. Hopefully we will have results tomorrow or the day after.

Thankfully - his bone marrow came back as "the best case scenario."
A few days after this - he was finally discharged home.
We spent about a month and a half in the hospital.

More to come...the journey certainly wasn't over.