Monday, March 3, 2014


Dear Lucy,

   My sweet girl, I love you so very much. You make my life better, you give it meaning, you give it joy. You are beautiful inside and out. You are asleep and I'm sitting on the couch listening to the new Beck album. 

Music will play a key role in your life. It will guide you through life. It will touch on the emotions you're feeling but can't express. It's a powerful presence that can make you happy or sad. It can make you think about your whole life in a single song. 

I have so much more to tell you about music, but you just woke up. I'll just have to write about it later, but for now let me tell you one last thing... Never listen to Metallica. :) 

I love you peanut. 


Saturday, February 15, 2014

Feeling sorry for yourself

Dear Lucy,

Before mommy continues with these letters, you need to hear something. It's in our human nature to only think about ourselves. It comes very naturally. It also is very easy for us to feel sorry for ourselves. Don't allow that! The minute you begin to feel sorry for yourself, you lose true perspective. Life is too short for that. Love God, love others, and enjoy life. I love you just about better than anything.


Thursday, February 13, 2014

About mommy

About your mommy:

  I'm 27 years old, was born in Chicago, IL and adopted at birth. Mommy came from a very small family, just a mom, a dad, and me. My parent's names were Robert and Jean. You will not get to meet them, they both passed away from cancer before you were born. I had a relatively normal childhood, we were just an average family with our own ups and downs. My mom somewhat wore the pants in the family, my dad thought he did, but it was your grandmother that kept it all together. Our biggest issue was my father's alcoholism. He caused a major strain on our family. I will write a letter about that at another time.

When I was five years old, something extremely bad happened. Something that I have carried with me my whole life. It's something that I need to tell you, mainly in hopes of teaching you how to protect yourself. I will tell you everything when the time is right. Just know, mommy will always protect you, and do whatever I can to keep that type of evil from harming you.

We moved from Chicago to a small town in Tennessee. Upon starting school, I was made fun of for having a northern accent and worked hard to get rid of it. Don't do that. Don't change who you are. I like you just the way you are. Shortly after moving, my dad became sick. I don't remember much about his illnesses, but I do remember him being on an oxygen tank and I remember when he quit smoking. Then came the cancer... I will never forget that.

The fall after my fifteenth birthday, my dad started talking strangely. He developed a very raspy voice that sounded like Don Vito from The Godfather. He also started suffering from severe headaches, and by the end of October of that year, my mother had to take him to the ER because of one. I was so young, I was 15, but I was still a child in so many ways. I was very independent, my mom taught me how to be, but I was still not familiar with real illness or death. While we were at the ER, they took my dad for CT scans, while my mother and I sat together in a small examining room. We didn't speak. There was a sense of fear in that room. It was already present. Before my father returned from the scans, I remember my mom answering a phone that was attached to the wall. It was my father's primary care physician. I believe that was when my mom found out. I don't think a doctor ever came in to tell her. I just remember her face when she answered that phone. She turned gray and panic began to set in.

My mom and I headed home that night, leaving my father alone at the hospital. That night my mom, very angrily, told me that my dad had lung cancer and brain mets, which meant he had lung cancer that spread to his brain. He also had some type of tumor in his throat. I know they told my mom it didn't look good, and it was only a matter of months. Oh my sweet girl, that first night... We hadn't been home long,  mom asked if I would sleep with her, as a sort of comfort, little did I know how much it would mean to me as an adult. I remember lying down beside her, but I didn't sleep long. I awoke to her screaming and crying in the kitchen. I could hear her falling to her knees, she was screaming at God, she was begging God... I will never forget her voice that night. She was on her knees pleading, "God, why oh God why... Please no...GOD!" I went to the kitchen to see if I could help her... When I saw her there, sobbing next to the sink, I knew then things were going to change.

After four and half months of chemo and radiation, my dad passed away. When I saw my mom right after, she was wearing some sort of denim dress, it must have belonged to another family member. It wasn't typical of her clothing. Maybe someone brought it to her in the hospital, I don't know. The chest of that denim jumper was soaked in tears. She looked angry, she looked lost, she didn't look like my mother anymore. Really, she started to lose the look of my mom at the beginning of his cancer, but it wasn't until it was all over, that I no longer recognized her. I remember my father's wake and funeral and I remember going to a small diner after the funeral with my father's family. My mom and I were sitting next to each, surrounded by many family members, but still to this day, it felt like it was only her and I. I was wearing a new black dress that my mom bought for the funeral, and I had spilt ketchup on it and was trying to clean it off, at that moment my mom placed her hand on my knee. I looked up at her and she just barely smiled. I saw my mother in that smile. Deep in that shell of a person was my mother. I knew, by that smile, that she was saying it's just you and me now.

My father passed away in March, I turned sixteen in June, and in October of that same year, I was diagnosed with Polycystic kidney disease. I wasn't sick, I actually had felt fine. I wanted to miss school, so I told my mother my stomach hurt. She said if my stomach was hurting that bad, I'd need to go to the doctor. By the way kiddo, don't lie. It's not becoming of person and it makes you unreliable. It makes people question your every word, and distances yourself from reality. Be better than that. So, I headed to the doctor where I had to continue my lie and told them I had stomach pains but no vomiting, nausea, or diarrhea. Thinking it was my gallbladder, they sent me for an ultrasound and an Upper GI. The Upper GI was disgusting. You basically drink crushed chalk mixed with a drop or two of water and eat unflavored pop rocks. Then you roll around on a table while they X-ray your stomach, as they instruct you to burp, fart, and make every other attractive sound your body is capable of producing.

The ultrasound was much easier. I just laid back while they squirted cold gel on my abdomen and scanned my stomach. Everything was going normal until they got to my kidneys, at that point the ultrasound tech called in another tech to look at the screen, then one of the techs asked if I had had a family history of kidney disorders. At that time, there was not. A few days later, I went to my doctor for the test results. The Upper GI showed that I had acid reflux. I remember my doctor taking a really long time to explain to me what acid reflux was, she even drew a picture. I was sixteen. I was more than capable of understanding, but I know she did it because she dreaded telling me the results of the ultrasound. She is an amazing woman and I have the utmost respect for her. She then went on to diagnose me with PKD.

Life went on... I lived life like any another teen. I went to school, worked a part-time job, and fishing through the angst that is teenage years. You will spend a good majority of your life trying to figure out who you are. It starts early and I'm not sure when it really ends. The rest of my teen years were pretty uneventful, until I turned eighteen. Shortly after starting college, I was diagnosed with a brain tumor. That's somewhat of a long story, I'll write you about that later.

At nineteen, mommy met daddy. The first time your father ever laid eyes on me, he gave me stink face and scoffed. That's pretty much the basis of our relationship. By the time you read these, you will understand. Your dad and I are two completely different people, but at the end of the day, he is my best friend. He always will be. No matter what may happen, what changes may occur, he will always be my best friend first and foremost. Daddy saw me at my worse and still stuck around. The love I have for your father is so different than the standard spousal love. He's my family. Your daddy says we are like siblings. I think he has issues. Haha!

Daddy and I dated for four years, and as I write this, we have been together for eight. During those first four years, mommy lost her way for awhile. I had to grow up so fast and never had sight of being young and carefree. I truly don't believe God ever called for my life to be lived that way. I say this because at twenty-two, my everything dissipated. My life steered completely off track, and really did not straighten out again until you.

On August 28th 2008, my beautiful, kind, loving mother was diagnosed with stage 3c ovarian cancer. God, it still doesn't seem real. My world came crumbling down before me. She was family, she was best friend, she was my mother, and for the first time ever, I was at risk of losing that stability I had always known. This aspect of my life isn't so cut and dry. It's the whole reason I am who I am today and it will take a couple of letters to completely sort it out, mainly because I'm still sorting it out internally. I still cry about your losing your grandmother, I can get upset about something and immediately go to call her, knowing very well she won't answer the phone. I've called her number a few times since she died and one time received a call back from the new owner of her phone number, I never called it again after that. It's been over three years, and she still plays such a key part in my life.

Eight months before your grandmother passed away, Daddy and I decided to get married. We didn't have a "real" wedding by today's standards, and instead we went to the courthouse. No, mommy wasn't pregnant. Even though that question was asked a lot. My mommy was too sick to help plan a wedding, no less sit through a whole day of wedding bliss. So, we made the best decision for our lives. I don't think I would change the way things were done.

My whole life my main goal was to get married and have a family. I always knew that's what I wanted. I don't think there is anything else in my life that I've ever been so sure about. Your father on the other hand, never really desired the "typical family" lifestyle. That causes us to clash quite often. But know this, above all your daddy loves you so very much. He will always love his little girl. Well, when mommy was nineteen, she was told she would never be able to have children, adoption was our only option. Shortly after getting married, someone, we will call her Carrie, sent mommy a text. She told mommy she was pregnant and wanted us to adopt the baby. We immediately went the next day to see Carrie and the father of the unborn child. Everything went beautifully. Then a couple of weeks after that, mommy received another text stating that Carrie had changed her mind, and felt she needed to keep her baby. Mommy was devastated. That's also another long story. Our struggle with the botched adoption, us attempting to become foster parents, it goes on and on. I will tell you about that when it's time.

After the failed adoption, it really hit me that my mom was getting worse and I knew she would not be able to see a grandchild if it didn't happen soon. I went to daddy and discussed the option of trying to conceive. It wasn't just that I had been told I would never be able to have children, it was also that is was very dangerous for my health because of the kidney disease, but I had faith things could possibly work in our favor. I prayed to God and made a promise, I told God if He would allow me to have one healthy baby, I wouldn't rock the boat again. I also told God we would try for one month, and if I did not conceive that I would realize it was not His will.

On May 10th 2010, while on vacation in Tybee Island with your godparents, I found out I was pregnant. I actually got pregnant on the first try. That is by far the greatest thing that has ever happened to mommy. God is so beautiful and the most important thing I can teach you, is to love our Father. He will not forsake you.

My dear girl, I knew you before I knew you. I knew you were my little girl, I knew you'd be named Lucy, and I knew you'd have my mother's green eyes. You were light in such a dark time. God blessed me with you. I pray I can always be the mother He would want me to be.

Mommy had a very easy pregnancy. All of these women that suffer miserably through pregnancy make me queasy just hearing their horror stories. Thank you for going easy on mommy. Everything seemed to turn around but then by July of 2010, my mom made the decision to stop chemo. I decided to take a leave of absence from work to help take care of her. I truly thought she would get better and start chemo again. Little did I know...

On August 19th, my mommy left this world. I was forever changed. My whole family, the person that had held my hand my whole life, the person that taught me how to walk, how to talk, how to love, was gone. As if she had never been here, she was just gone. I went home after she passed away, laid down around 6:00pm and just cried. I cried until I feel asleep. I only slept about two hours that whole night. You stayed awake with me though kiddo. You kicked mommy all night long. As if you were saying, it's you and me now.

Everything went by so quickly, I can't even begin to think about it all at this time, but on December 17th, I was sent to the hospital to be induced and four days later, my beautiful girl was born. You were the most beautiful thing I'd ever laid my eyes on. She were just perfect. Ten little fingers, ten little toes, the cutest butt I will ever see, and the most beautiful green eyes. You were mine and I was yours. We belong together sweet girl.

I will go into further details on a lot of these times. I started this blog in the hopes of letting you know everything about our lives, but I also had hopes of helping people with my kidney disease. But I've decided to go back to my original idea. I love you sweet girl. You are my perfect, yet sassy, girl. I adore you.

I love you just about better than anything.


Saturday, March 2, 2013

Last Titration

Dear Lucy,

Well, here goes nothing. It's time for me to start my last titration. Now I will be taking 90mg of my tolvaptan in the morning, but my evening dose stays at 30mg. I'm going to the bathroom once an hour, sometimes twice. Not often though. I am waking up in the night to pee maybe 3 times, but thirst is waking me up 5 or more times. I believe this is the highest dose they prescribe of tolvaptan. Mommy may need to borrow a diaper! Haha! I love you sweet girl!



Thursday, February 28, 2013

Week 2 of Tolvaptan...stomach bug!!

Dear Lucy,

Whew! The past two days have been rough on mommy. Mommy is on her second week of Tolvaptan, with a current dose of 60mg at 8am and 30mg at 4pm. Two evenings ago, mommy started feeling sick to her stomach. After many hours of some type of stomach virus, the dehydration kicked in. I was well aware that the medicine could make me dehydrated but I did not realize how quickly. I didn't realize that dehydration could feel this bad. I took the medicine during the 8 week study, but I didn't get sick. I didn't deal with a cold turned sinus infection, then a stomach virus. It's making my mind play games, it's making me feel like it's the medicine. I'm trying to understand that it is just the likeliness of dehydration brought on from any illness while taking the medicine. I'm trying to grasp that it is not the medicine alone. It's the illness inducing additional issues.

I'm so thankful to be on this medicine, I just feel so bad right now. That kind of feeling you get when you have the flu. Ugh! I don't want to complain, I'm just fortunate to be Tolvaptan. I know that! Guess what, you just climbed up in my lap for some cuddle bug. You are so perfect. You bring mommy back down to earth when she gets a little off track. I love you sweet girl!


Sunday, February 24, 2013

8 week Tolvaptan Study Part One

Dear Lucy,

     Mommy has completed an 8 week study for her pkd through Emory Hospital. I started the study in November of 2012. It was a double blind study, meaning I, nor the doctors, knew what dose of Tolvaptan I was on, or if I was on the placebo.

A little history, November of 2011, mommy became extremely sick and had a lot of blood in her urine. I was throwing up until I was dry heaving, daddy was at work, and it was just you and me kiddo. You were almost a year old. You were still crawling and just starting to walk alone, you were the sweetest little girl I had ever seen. You were beautiful and chubby. Perfect in every way. You're still the most beautiful girl I've ever seen, still the sweetest, but you aren't so chubby anymore. Anyways, as I threw up, you crawled from the bedroom to the bathroom, and sat behind me with your little baby hands on my back. As if you were trying to comfort me. I had been sick all day and dealt with it as long as possible, but it got to a point that I felt faint from dehydration. So we called daddy who rushed home, and took mommy to the ER. A few days before this, mommy felt a lump below her ribs, above her belly button, and right at her left side. Mommy thought it could be diverticulitis. Mommy has never had diverticulitis, but it seemed to meet the symptoms. So, we rush to the ER, they pumped mommy full of fluids, perform an X-ray, blood work, etc...

The X-ray showed that I had ruptured a cyst, it also showed that the lump I was feeling was in fact a massive cyst. This was the first time mommy had ever experienced a cyst that she could feel on the outside of her body. One that would bulge like your little elbows would, or like your little feet when mommy was pregnant with you. Before releasing me, my nephrologist informed us that it was time to have some cysts drained. Mommy knew we had all the holidays coming up. So, I sucked it up, dealt with it, and waited until things slowed down.

In April of 2012, we went to Emory for a consultation. It was at that time, that I was introduced to Tolvaptan, and what it was doing for Pkd patients. My doctor at Emory wanted me to join the study but she felt the drainage needed to be done very soon. So a week and a half later, we headed back to Emory for a bilateral percutaneous cyst drainage. Boy oh boy was that fun! We spent around 12 hours in the hospital, one reason was that the department that was performing the procedure was running behind. Once in the room, I remember being asked to lay on my stomach, and I remember the nurse telling me that she was giving me something to help me relax. After that, the only other thing I remember was feeling the lidocaine shots in my sides. When I woke up, they informed me they had drained a few cysts on each kidney and before we left the hospital, I had to get up and go to the bathroom. As I got up for the first time, I turned and looked at the hospital bed. That's when I saw a lot of blood on the bed where I had been laying. I was sent home and that was when more fun began. The cyst drainage was an extremely painful procedure for me. Well the afterwards was painful. They didn't send me home with any pain medicine, but I didn't feel I would need it. When I gave birth to you, I refused to be sent home with pain meds, I took Ibuprofen, and was for sure I could handle this. It was a deep ache in each kidney, if I coughed, moved quickly, moved too much to one side, I would feel this horrific, sharp pain. At that time, you were about 16 months old. I wasn't suppose to pick you up for 6 weeks, but little did they know, you are a mommy's girl, and that was just not possible. So, about 3 days after the procedure, mommy was holding you again. I couldn't standby watching you stretch your chubby arms out at me to hold you, and not carry you, or pick you up. After the procedure, I had to wait 6 months before I could go through screening for the Tolvaptan Study.

This is a photo of the day after the procedure. They used a 10 gauge needle and well, Lucy, mommy does NOT like needles. You seem to share my love of needles.

I read everything I could on the drug and I read all the information about the clinical trial. Seeing that I have a background in pharmacy, it wasn't hard for mommy to understand the chemical makeup of the drug, and the benefits of taking the drug. We headed back to Emory for the screening visit, in hopes that mommy would be accepted. At that appointment, they performed an MRI, blood work, an EKG, recorded weight, blood pressure measurements, height, and well, pretty much you name it, they checked it. Knowing that I was in Stage 3 kidney disease, a GFR under 60, and creatinine at 1.17, my coordinator felt pretty confident I would qualify. The main qualifying factor would be my total kidney volume. The total volume to qualify for the study had to be 340ml. If mommy is not mistaken, the average total kidney volume for someone my age, weight, etc. is 154ml. My kidneys combined were a total kidney volume of over 3200ml. The head doctors over the pkd research department informed me that my numbers may look good, but by looking at my kidneys, they would classify my progression of the disease as severe. Well, my sweet darling girl, they don't know our Jesus! After what felt like a year, I finally got the email, I was accepted!!!! The biggest blessing second to you! The one hope that they have found for pkd patients, and I was in line to receive it! Within a couple of days, I was mailed a huge box with materials pertaining to the study. Inside the box was a cooler, a toilet cap(which you immediately snatched up and turned into a hat), containers for a 24-hr void, a bp monitor, an electronic diary, and instructions for everything. My coordinator mailed me three containers for the 24-hr void. I was to do it the day before my next appointment. The blood pressure monitor was programmed to take my bp every 30 minutes for 24 hrs. Then there was the diary. The diary was supposed to be used to record every time I went pee for 5 days So, once again, we head back to Emory, I turn in my urine, which I barely hit half of one container. We turn in the bp monitor, they reprogrammed the diary, and brought of the medicine. There it was...RIGHT IN FRONT OF ME. Medicine that is so incredibly expensive, the only medicine that has shown to stop the progression of this disease. So we leave with the medicine and immediately after getting into the car, I tear it all open and start examining the pills. Of course, because this is a study, the pills were completely white, no defining markings, no letters, no numbers, nothing! The medicine came in two boxes, each with three small bottles. two bottles marked am, and one marked pm.

Now, we fast forward slightly to the first day taking the medicine. Due to this being a double blind study, there was no indication I would be on the actual drug. My chances of getting the actual drug and not a placebo were 75%, though. Even though the odds were in my favor, I didn't want to get too excited, just in the event I was on the placebo. Mommy made sure to stay skeptical and made sure not to allow her mind to play games with her. Sometimes, our mind can make us believe things are one way, when that is not the actual matter. Day one of the medicine starts, at 8am I take my morning dose which was 2 small, white, round tablets and one white capsule. That afternoon at 4pm, I took one small, white, round tablet. Around 6pm, I determined I was on the placebo. I had taken all of this medicine and felt nothing. Going to bed that night, I kept in mind that after completing the 8 week study, I would qualify for the 3 year open label study. I didn't sleep long that night. I woke up 8 times in the night to pee. 8!!!! That was insane, but that was when I knew! Now, my sweet love, it is time for mommy to put you to bed. I will continue to write you about the journey tomorrow. I love you just about better than anything.



Busy times

Dear Lucy,

  My sweet, sweet girl... It has been an extremely busy few months. Things are finally starting to slow down. Over the past few months, we celebrated your second birthday and second Christmas. Mommy completed the 8 week study. Your Godparents surprised us with a visit over New Years. After typing it all out, it doesn't sound like that much, but it was! Mommy is hoping that these letters will help a lot of other people; as well as letting you know how much I love you and how blessed I am to be your mommy. So, it's time for mommy to get caught up. I love you my sweet pumpkin. Thank you for being you.




  Here is a special photo from your birthday party. You LOVE Yo Gabba Gabba! Your amazing Godfather made the Gabba characters and brought them to your party! This photo is so perfect, you were upset because your Godmother had already stopped you from playing to fix your hair. Then, mommy put you in the chair for a photo.