Saturday, February 20, 2010

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.


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