Age 2 - 3 years old

Photo time line of Haven between January 2006 and January 2007. This is where it starts getting tricky and very confusing.

This was my 2nd birthday party! I had a blast with my friends and family.

My dad and I are always goofing around.

Putting together my birthday bike. After working on dad's all the time it was time I built my own.

This was me in early February. I spent a day at the beach with my sister Kendall. We had a lot of fun playing in the sand and water.

A day at the San Diego Zoo. We had a lot of fun climbing through tubes. Dad was chasing me everywhere.

In March I got this cool scooter! I went everywhere on it. My sister had one so I had to have one.

Easter. I got a cool hat from the grandma and some Easter stuff.

My first time coloring eggs. It was great.

I've always gone my own way and have been very independent.

Hanging out at a friend's house. We were watching the horses and goats.

I love working on bikes with dad. He never seemed to be able to work on them without my help. I've always been a very good assistant to him.

In May my grandparents came out and visited with me and Kendall. We had a lot of fun playing!

Goofing around. This was only a few weeks before all my changes would begin. This was around the middle of May 2006. I was about 2 years and 4 months old.

By the end of June I had gained a lot of weight and it just didn't seem to stop. My mom became concerned and took me to the doctor. We had a long talk with the doctor about my food and mom and dad never gave me junk food. Even my Easter baskets would be filled with toys and sandals instead of candy.

We did a lot of blood tests over the summer and everything kept coming back normal. The doctor told my mom they were feeding me too much food and to cut down my calories.

By the end of September mom was more concerned because I kept gaining weight while on a diet. We tried and tried to lose the weight but it just wouldn't come off. This was me at LAX ready to go visit my grandparents in Ohio again.

When we got back from Ohio mom took me back to the doctor to find out what was going on. We did more blood tests and an MRI of the brain. Nothing showed up. Everything was normal. The doctor once again told mom to put me on an even stricter diet.

In December we went to visit my grandparents in Utah (they'd moved from Arizona). We had a great visit but all mom kept thinking about was my weight. At this point they began to notice that I was showing signs of OCD. I would file everything and it had to be filed by color. I would get extremely upset at any changes in my schedule or if something was done differently. At this point I began complaining of stomach pains.

Mom already knew I didn't fell pain and that I couldn't cry but now I was saying that my stomach was hurting in the same spot all the time. We went back to the doctor again at the end of December. We did more blood tests and nothing. The doctor sent us to a Pediatric Neurologist to discuss Autism.

We met with the Neurologist and she did a lot of tests on me. We hinted around at Prader-Willi Syndrome but the only symptom I had was food. I loved food. Then we moved on to Asperger's Syndrome. But this wasn't fitting either. The Neurologist dismissed us and said there was nothing wrong with me.

Shortly before my 3rd birthday the pains in my stomach were so bad I could barely walk on some days. I began to have blood in the toilet when I would go to the bathroom. Mom took me back in to the doctor and told him I was bleeding and still having stomach pains. He felt around on my stomach and said it was fine that I was pushing too hard. Mom was not happy. She left vowing to not go back to the doctor but I was hurting all the time.

This was me at my 3rd birthday. I had gained a lot of weight in just 6 months. Had MRIs, blood tests, Neurology, and bleeding but no one could give us any info.

Age 3 - 4 Years Old

After my 3rd birthday I began having outrageous sleep walking episodes. I began to scare my parents with how much I was running around upstairs in my room that they put me in their bed. Only a couple weeks in there and I had one of the worst sleep walking episodes that really scared my mom and caused us to move downstairs. For the next 4 months I slept on one couch on top of my mom and dad slept on the other couch. Mom wanted to keep me safe and not having any stairs was the best.


In February my mom was more concerned about the possibility of Autism she called and called to try to get back in to the Neurologist but she refused to see us - saying nothing was wrong with me. Mom knew different.

We did finally get an MRI approved only it wasn't for what mom wanted. She wanted my stomach scanned due to bleeding and pain and instead they did my brain. It came back normal.

I had to stay over for a day to monitor after the MRI due to breathing issues. f

In March mom was getting fed up and took me back to the doctor for stomach pains, bleeding, weight gain, and personality changes. I was no longer playing with kids or smiling. I had stopped showing emotions like hugging and laughing with my parents. I just became mean and reclusive. The doctor at this time was getting more and more upset with my mom and started making her feel like she was making it up. She requested the doctor refer us to a Nutritionist to discuss what we could do. I had gained over 35 pounds in one year.
About two weeks later Mom was amazed to receive a letter from a Nutritionist REFUSING to see us. Angry, mom decided we would no longer go to the doctor.

In June my eye turned out almost overnight to the left. I could no longer look straight. It was so sudden mom was scared. We were concerned there could be a tumor in the brain that was pushing on the eyes. My doctor ordered an MRI........that almost ended my life.


Mom took me to the hospital for the MRI - dad was meeting us there. He hadn't arrived yet so mom took me back to the room. I can remember sitting in the hallway with 7 doctors surrounding me trying to stick a needle in my leg and mom holding me in her arms. Suddenly the needle went in to my leg and I looked up at mom and told her not to leave. Mom was crying.

Then suddenly I began to get cold and in a matter of seconds I started going in to violent convulsions. My eyes rolled to the back of my head and I was flailing all over. The doctors came running and grabbed me out of mom's arms and took me down the hall. They escorted mom out and wouldn't let her see me. Mom ran back to the main desk and dad was there waiting. Mom was frantic and screaming and crying and dad had no idea what was going on. Mom told him and they demanded to know what was going on with me and no one would tell them. They made them leave the waiting area and would call when I was ready.

About 4 hours later they called mom and dad in. The doctor took them in to a different room and told them that I had gone in to a seizure and actually stopped breathing for 2 minutes but they brought me back. I would have to stay on a ventilator until I was able to breathe on my own. Mom was furious and couldn't look at the doctor so dad took over talking while mom came to see me. I remained in the hospital for one week.

Resting after getting the ventilator out. They had to stick me so many times to find a spot for the IV. At the time we didn't know what was wrong with me and that IV's don't really work with ROHHAD children.

I was very weak and had a lot of throat issues once they removed the tubes. Dad fed me at every meal and really took care of me. He never left my side. Mom was dealing with doctors and hospitals and trying to take care of me and work.

The only spot they could find to put an IV in was my foot.

It was after this visit in the hospital that my mom had had enough of the doctors and the multiple hospitals in California when she decided we needed better care and someone that would listen to me. She began looking for jobs and found one in Maryland and she would get me in to Hopkins.

This was my last day at school. I loved my school and my teachers but mom decided I needed a good hospital.
We were all packed up and ready to head east to Maryland. Over the two weeks of driving my mom began taking more notice of little things.

We were able to clearly see that my eye was turned out and not getting any better.

This was me in Oklahoma. I had fallen asleep and I was burning up. After about 30 minutes my eyes opened and I asked for food. My mom made my lunch and brought it to me then she realized that I was still asleep. I wandered around the cabin for a while and mom and dad couldn't wake me up to eat. They decided to throw me in an ice cold shower. It was so cold my mom's arms were frozen. She pulled me out after a minute and I was still unable to snap out of it. Mom put me back on the couch and after about 30 minutes I snapped out of it and wanted my food.

Little did mom know and we didn't find out until 2 months later - I was having a seizure at the time.
Here I am wandering around the cabin. I always look wide awake and functional to people who don't know.

Mom and I at dinner.

Me with my sister and mom.

We finally arrive in Maryland and I started hanging out with my grandparents a lot. Mom was waiting on health insurance to kick in before we could get me a doctor appointment. This was September.I love going hiking. Mom and dad would take me with grandma and grandpa every weekend when we first moved here.

This was the last weekend in September. My dad had gone back to California for our other car and we went to the Renaissance fair. It would be about 10 days later (and 9 days after getting insurance) that my world would change forever.

On October 10th, 2007, around 7:30pm I asked mom if I could go to bed that I was really tired. So she took me back to bed and I fell asleep quickly. Around 8pm mom was upstairs and dad was downstairs when mom heard me snoring very loud. She came back to check on me and closed my door a little. She went back out to watch TV when around 8:30 my snoring was even louder. She came back to check on me by peeking in the door and then went downstairs to tell dad about my snoring. Around 9pm she couldn't hear the TV over my snoring from down the hall and she decided she would come lay me on my side. She walked in to my room and I was already on my side so she came in closer. Mom started screaming frantically and dad was upstairs within one second of the scream. I had thick brown foam all over my face and was barely breathing. Dad instantly grabbed me and took me to the living room and layed me on the floor. Mom called 911 and during the phone call I stopped breathing twice. Dad performed CPR while mom kept talking to 911. All of the sudden we had 4 cop cars, two firetrucks and two ambulances on our front yard.

The medics came in and were sticking pins in my feet to see if there was any reaction. NOTHING....I just laid there stiff and my jaw was now locked. Nothing would bend. They checked my blood pressure and it was 190/86 and my heart rate was over 200. They swept me up and put me in the ambulance and continued to work on me for 20 minutes in the front lawn. They wouldn't let my mom or dad near the ambulance. Mom could see that they were getting the paddles ready as they believed I was going in to cardiac arrest.
Soon we were off to the hospital. I remained in my seizure for the next 45 minutes. During that time they took me back to CT and dad stayed with me. Mom stayed at the ER room with Grandpa. When they brought me out they told us "Sorry, we can't help you. We have to call Hopkins to transport you down there".

Around 2am we arrived at Hopkins which would become my life. We met with many specialists who did tests to rule out many different things.

This was my first seizure test for Neurology. The doctors were not able to explain what type of seizure I had but I received medicine for seizures at the time.

It was this time that we met with Endocrinology and he took us on to figure out what was going on with me. We spent the next two months testing for Cushing's Syndrome and lots of blood work. This kept coming up fine and there was nothing wrong. But he didn't give up. He decided with the stomach pains and bleeding that he would check me for pheochromocytoma. Which is a neuroendocrine tumor on the adrenal glands.

We went back to our lives.

I was ready for my first winter on the east coast! I was looking cool.

Christmas at G&G B-honey's house. My sister Kendall came out to spend some time with us.

Me with my mom
We drove back to Ohio for Christmas and we made lots of Christmas cookies.

I love video games and had a blast playing with my cousins.


On December 26th we drove back home from Ohio and planned to enjoy the rest of the break. On December 28th, 2007, my mom received a phone call from Endocrine. She had been waiting patiently through the break for my test results of the adrenal tumor. The call she received was not one she was ready to take.

"Your daughter has cancer"

She was informed that Oncology would be calling to schedule appointments going forward.

Age 4 - 5 Years Old

This was me at the end of age 3. My grandparents came out from Virginia and Utah to spend my birthday with me. We had lots of fun playing in the make up and getting dressed up. I spent the day with Grandma Virginia just being girly.

It's so much fun to get all made up and pretty.

We had a few fun days with make up and curling my hair.

This is the last picture of me with blonde hair. Mom curled it up and it was so long. It had never been cut since I was born. Mom was sad to have to cut my hair and she cried after cutting it. But she didn't want it so long if it started to fall out.

My fourth birthday. Mom knew what was coming and made all of the doctors wait until after my birthday. We were preparing for a 14 hour surgery to remove the tumor in my abdomen and to put the cath-o-port in my right chest. The tumor had wrapped itself around the Aorta and Vena Cava arteries and was threatening to close them off.

After a while I was able to give myself the anesthesia for my scans. This is as I was going in for my mIBG scan to check the spread of the cancer.

Made it through the mIBG with no issues and was all smiles ready to go home.

Grandma Sing and Grandpa Beard-off came out to see me and spend time with me for my birthday. They stayed through my surgery and sat in the waiting room at the hospital the entire 14 hours and prayed over me.

February: My dad took me back to surgery and to get me prepared with the anesthesia. This was supposed to be 6 hours but ended up being 14 hours once they got in there and saw how bad the tumor was and where it was located.

I stayed in the ICU for 8 days slowly recovering from surgery. Mom and dad never left the waiting room. Parents are not allowed to stay in the ICU rooms if sleeping. They took turns going home, showering, and bringing back food. For the first couple of days I had a vent in to keep breathing.

Once my lungs were strong enough they were able to take the vent out but I kept sleeping and was on a lot of pain medication. The surgery stretched from side to side across my tummy above the belly button. But the surgeon was able to get 95% of the tumor removed. All the remained was at my spine. Mom would brush my hair each day and give me a sponge bath. Dad would read to me and help me eat.

It took a few days to start waking up. I couldn't talk for a long time. We were able to move down to a regular room after about a week. I was getting much better and ready to go home.

Then we had to go in for another MRI to check the tumor before I went home. Something happened and when they intubated me the tube went down to far and collapsed my lung. I was sent back to ICU for another 48 hours where I had to work to get my lungs functioning again.

Once that was better we were sent back down to the regular rooms and this is me headed to another MRI. You can bet mom and dad didn't let the the collapsed lung incident go unheard at this scan. All was great and they said I was able to go home. I had my new port in my chest and the tumor removed.

After 2 weeks in the hospital I was allowed to go home with mom and dad. I made it about 15 minutes after this picture and slept for two days. This is the incision site where they went in and removed my tumor. Amazingly since I don't feel pain I never had issues with the stitches or staples.

Easter is one of my favorite holidays. I get to make lots of colored eggs and get a cool basket of goodies.

My cool Easter basket. I was happy to be home and relaxing because we were getting ready to start my chemo. Mom and dad met with lots of doctors for hours and hours at a time. Sometimes they'd be there for 5 - 6 hours talking with doctors. Finally they signed all the paperwork - which was like buying a house - and I was set to begin chemotherapy treatments.

April: My initial blood withdrawals before chemo. Never did I know this would be what I do constantly. I use a 1" needle in my chest that hooks in to my port and withdrawals the arterial blood for labs. Usually they take about 7 - 10 vials of blood.

When I first started chemo in April 2008 we were pretty busy at the hospital. I did four days a week for the first two months at 8 hours a day. Then after two months I went in every two weeks to get chemo. I also started a mega high dose of Prednizone to lower my immune system. Mom and dad put me on an extreme low sodium diet. I remained at less than 100mg of sodium a day and under 800 calories. This lasted for a complete year.

On top of the chemo and steroids I was taking a lot of at home medication. This was breakfast and then I get 7 more tubes and 1 cup of medication for dinner. This lasted for an entire year until my medications changed. I had extremely high blood pressure on top of it all.

One of my first times going to the hospital after treatments. I have to wear the blue mask every time I enter the hospital since I don't have an immune system. Being trapped in rooms with germs and elevators with lots of people. I really don't like these masks because they are thick and padded for chemo patients only - you really can't breathe well in them.

In May I got to go visit my Grandparents in Virginia for the weekend. Mom and dad got to go out and wander around Roanoke. It was a good little get away from the doctors and hospitals.

Mom and I went down to the bay to walk the lighthouse path. It was a bit chilly but we had a lot of fun!

Now that surgery was complete and chemo plan was in place it was time to start working on my eyes. It had been turned out for so long I was starting to lose my vision in the left eye. So we worked closely with my eye doctors and put a treatment in place. I had to keep the right eye covered to force my left eye to work.

This is Tovi. I was in love with Tovi - he was my best friend. We did everything together. He went to all my doctor appointments and never left my side. Until he started getting me in trouble. He started to make me say bad things and have a bad attitude so he was shipped off to my Aunt Candy in Ohio. She takes care of him now.

I love baking with my grandma Virginia. She always came up and stayed with me for a week at a time and we'd have so much fun baking and doing crafts. These are our famous pumpkin muffins.

After a few months of chemo it was getting hard to walk across the hospital - which is like a city - to MRI, CT scans, and Oncology. Dad decided it was time to get me a wheel chair. I also got cool masks from my dad for my hospital trips. These were so much more comfortable.

Well....I really didn't like the patches that the hospital gave us and my dad wanted to make me cool so he went out and bought pirate patches for my eye. This is one of my favorite toys - it's an alien maker.

Mom wasn't a huge fan of the pirate patches so dad went online and found some cool girly ones for me. This was me after a full day of chemo. I would always be so cold and not feel well. Mom would curl up with me and do my hair or massage my cheeks and nose. The steroids made me swell up and it felt so good to get a face massage.

After a while the steroids really took over. I was on a high dose that I took two times a day every day. It was uncomfortable and mom would spend hours massaging my legs and arms because they would swell up so bad. We couldn't find any shoes that would fit me and mom would spend many nights going crazy trying to find clothes and shoes for me. She'd come home crying because nothing would fit me. I spent a lot of time in loose t-shirts that my dad would give me from his closet.

When at chemo we have a playroom with toys and games. Usually I stay in my room for the entire 6 - 8 hours of chemo but every once in a while I would have enough energy to walk to the playroom. I even got to push my own medicine tree stand.

Mom got tickets to Dutch Wonderland from Casey Cares Foundation and we had Stryder come with us. We rode lots of rides and we had a great time. This was my first time at a real amusement park.

Hanging out in my chemo room getting ready to take labs. We always have to do labs before I get my medicines. By the time I'm done with the medicines all my lab work comes back.

Drawing my blood from my port. This is another advantage of not feeling pain. I don't feel the needle going in unless it's in crooked and we have to redo it. My favorite nurse is Katie. She knows how to do my port and always makes it so easy for me.

Three different times this half of the year I was playing or skipping and would suddenly fall to the floor. My body would lock up and I couldn't move. It would take about 20 minutes before I could get off the floor. I would be grunting and and unable to breathe. So my mom got me in to the Orthopedic Surgeon.

We did a full xray to find out what was going on with my spine and hip. Nothing was broken or fractured - which they were worried about because I can't feel pain. I was put on limited activity for a while and extra vitamins.

Once I was able to start playing again we got a Wii to help with my exercises. I love the bowling and boxing. We had a lot of fun playing tournaments.

I love arts and crafts. It's so much fun to paint and draw. I am constantly keeping myself busy.

I always love to go hiking with my dad - we check out lots of bugs and animals.

I love to take naps with my dad. It's a little hard for both of us to fit on the couch but I find this little spot and scoot in as much as I can.

One of my new cool dresses that my mom got me.

Even though the doctors said I couldn't go we decided to head to the Renaissance faire. I love this place and we go every year. I really didn't want to wear my mask so mom said we just wouldn't say anything to the doctors. She wanted me to go out and have a fun weekend with Baby Stryder.

Halloween - my grandpa took me to Build A Bear and I made Bamboozleroo. She is my cute pink heart bear. I dressed her up for Halloween and she became my best friend.

My special low sodium no sugar cookies.....not something I recommend to the normal person but someone on steroids that can't have the goodies everyone else has this is great! I love them.

This is one of my sleep studies. We do them every 6 months. I've been doing them since age 4. It's a lot of wires and cables but my dad stays over with me in the room. We have to be there by 8pm and I get the final wires on around 10pm. It takes a long time to set up. Then mom drives home - about 1 1/2 hours. She keeps up to date with dad by text and I try to sleep. Then mom leaves the house by 4am to pick me up at 5:30am. Then by 6am we're headed back home and usually sleep the rest of the day.

One day I was at home and I got a package in the mail. It was a Chemo Duck. My mom's friend Emily had contacted this company and they sent me a chemo duck complete with his own port. It had a book that explained cancer to me and how I am still me. I love him.

Thanksgiving.....whew....we're hoping the steroids are about finished soon! Constant medication and doctors and limited diet. Mom and dad let me enjoy some good turkey dinner!

One day I told mom that I wanted to get dressed up and take good photos. So we went to the mall and found the perfect photo op. I had a lot of fun playing around.

My mom contacted Make a Child Smile and suddenly I started receiving lots of cards from all over the world. It was great. I'd never received so many cards and letters from kids!

Christmas time. I was starting to feel better. We hadn't done chemo in about 3 months and I was only on steroids, amlodipine, colace, and bactrim. None of them made me feel sick and I was much happier.

During the Christmas season we were adopted by my nurses at Johns Hopkins Riverside. They asked my mom what my wish was and what I would like for Christmas. Never in a million years did I think I would get my wish to go to Disney. They raised enough money to fly us down there and we spent an entire week. I slept a lot - which you'll see in the 2009 photos but it was amazing.