Summer Camp

I was really looking forward to Summer going to art camp up until the day rolled around. Then, I was a little nervous, as was she. But, so far, so good. We have not had any major withdrawals on our parts. She left Teddy at home yesterday. I did not take him when I picked her up either and she had to endure lunch without him. Or, is it a her? She did not miss him too much, but she did notice that he was not with me when she came out of the classroom. Today I let her put him in her bag rather than me have to carry it back to the car with me. In return, she promised to leave him in the bag the whole time until I picked her up. (That was a win-win!!)

When we left camp, we took a nice stroll through the art district. She wanted to go to the sculpture garden first, but it was hot and I convinced her to go eat first so we could cool down with some ice cold water. Her favorite! We enjoyed a nice lunch of pasta and salad. No one ate the bread but me. I couldn't resist. Summer did not like the lasagna at Tony's Pasta, but that was okay because that was what I ordered. She had some kind of noodles with marinara sauce. Then we mixed in some Alfredo to make it pink and yummy. She topped it off with a scoop of chocolate ice cream. Then, we were off to see the sculptures. She led her daddy and myself to her favorite spot. She had us look off at the view. Then she led us through the rest of the garden. Her daddy and I hid from her once behind some columns since she was on a mission and leaving us in the dust. When she turned and looked for us, she was surprised not to see us. We quickly exposed ourselves and she smiled. On the way home, she got her daddy to carry her on his shoulders. I was the pack mule for everything else (my purse, Summer's camp bag, the Togo food, Clint's shirt and tea), but what's new? I was made for it!

Yesterday at camp, they made some cups out of clay. She told me she made a smaller one for Lexie and a bigger one for herself. I thought that was sweet. She usually does remember to get something for Lexie when we are at her doctor appointments too. Stickers and suckers are the usual treat and we've had our fair share of stops at the jars that hold them. I am not sure what all else they did at camp, but I think their artwork will be displayed on Friday after camp is over. I can't wait! Today they are working on self-portraits and looking at photographs in the the museum. Summer said she was not excited about that second part, but we will see what she thinks when I pick her up.

Which brings me to more exciting news. Summer is going to get to be in Chattanooga's Health Scope magazine as the model in the picture of the new CT scanner at our children's hospital. We go today after she gets out of camp. I am way more excited than she is. That is mostly due to what she is going to wear, but I hope she will just suck it up and put on the clothes and smile for the camera. We will see. She really does not like the shorts, which are super adorable and got lots of compliments when she wore them to her last MRI. Maybe the skirt she wore to camp today will work, but it is definitely not as cute as the shorts. I am anticipating a possible nap in her future should she give me a hard time and have a breakdown. I've promised her lunch anywhere she wants in return for her cooperation which means no whining or pouting. She also wanted to be able to pick a dessert place. LOL I told her she'd have to be perfect to get that. It could go either way, but I will be surprised if she manages that. In life anything is possible and as Justin Bieber's song goes: Never Say Never!

Jet Lag **edited

Summer and Lexie finally slept in this morning (later than 8:30), something that did NOT happen on vacation. They were both up before 7:30 every morning. They even made it to one 6 a.m. walk on the beach with me and Paw-Paw. It was fun although the stroller had to be carried across the very wide beach to the packed sand at the shoreline in order to be pushed. Paw-Paw toted Lexie while I hauled the stroller. When we got to the sand, it was a nice stroll down the rock and shell spotted beach. Summer is officially following in my footsteps as a shell collector. That makes me smile. It really is not worth very much to have boxes full of shells, but the hunt is sometimes addictive and fulfilling. Luckily, I have learned to control some of my picking up urges and don't bring home huge bags of them anymore. On our walk, Lexie asked for a shell so I picked her out two. When we got to the playground, which just so happens to be on the beach, she had taken a little bite off of one of them and was chewing it up. Then, she wouldn't spit it out. Kids. After we got the slides dried off, the girls were ready to play in the chilly morning air. Summer loves to climb all over the equipment and slide down the slides on her feet and other "non-normal" ways. She is not very fearful, and I think gymnastics has given her some confidence in her abilities. Lexie always loves the swings the best. On the way home, we stopped at Starbucks and got a morning beverage. Summer had to have something, so she got a bottle of mocha frappuccino. My dad and I got a caramel mocchiato. Yum!


After a big home cooked breakfast, we showered up and headed to Malibu. We paid to park at the pier and then walked down the beach. After only a few minutes on the beach, the girls shoes and socks were both wet and needed to be taken back to the van. I know it's crazy, but I didn't see that one coming. Then we took a leisurely stroll, looking for shells and chasing birds. Lexie really wanted to pet one, but soon discovered that they do not want her to pet them. Summer learned that lesson a few vacations ago. I still have not learned to stop daydreaming about living in one of the houses we walk by, but it takes longer for some of us than others. We walked to the end of the pier and took a look around the gift shop. There was a beautiful great dane that the girls loved. They gave it lots of attention, chasing it around the store until they were scolded and asked to not torture the dog. Good times. They both got a shark tooth which is probably lost by now. I think they were actually in my possession last, but I can't remember where I stashed them. As long as Summer doesn't remember getting it, I'm OK. But, her not remembering something would be completely uncommon and out of the norm so I better get to looking for them. :) We had lunch on the pier which was lovely for everyone but Summer whose pants were a little wet from the ocean. Next time, I'll have to pick out what she wears. She has become so independent in dressing herself that I rarely question what she wears. She does sometimes like for me to do it for her, but those days are getting rare. On a side note, she is also going to the bathroom more by herself and not needing me to wipe her. Usually it is just poops that she needs me, but sometimes, like during the night, she wants me to help with either. OK, so back to the vacation.

On our second day in California, we went to Disneyland. It was awesome and the kids were so excited to ride the rides. The lines were not too bad. The weather was perfect. As soon as we got there, the characters were taking their places to pose with tourists. We got pics with Minnie, Mickey & Donald in the first 10 minutes after our arrival. We started the day with a ride on the Astro Orbiter where the girls each got to control their own plane. Then we headed to the Mad Tea Party which was Summer's favorite ride at Disney World last year. They rode Alice in Wonderland, Dumbo, King Arthur Carrousel (several times), Mr. Toad's Wild Ride, Peter Pan's Flight, Pinocchio's Daring Journey, Snow White's Scary Adventures. Casey Jr. Circus Train was the last ride before lunch. After lunch we headed to Toon Town and visited Goofy, Mickey's, and Minnie's houses. Lucky for us, both Minnie and Mickey were home for pictures although Lexie missed Mickey due to a temper tantrum when leaving his house to go into his production barn. Summer rode her first roller coaster of the day, Gadget's Go Coaster, and fell in love. She was so excited the whole ride and had to ride it again with her dad after we went together. Last year, she wouldn't get any where near the kiddie coaster at Disney World, but this year she loved it. After that, we rode two more coasters which she also loved - Splash Mountain was her favorite. We finished up the day with Pirates of the Caribbean and Tarzan's Treehouse. On our way out of the park, the girls picked out their souvenirs. Summer got Minnie dressed as a fairy and Lexie picked a 2011 Mickey Mouse. To our surprise, neither girl fell asleep on the way home, although Summer almost did. It was a long, exhausting day, but so fun and one I hope they will remember.

The rest of the trip was spent visiting Hollywood and Venice beach. The girls played in the sand and loved mixing the ocean water with sand in buckets. Summer even got Lexie to try her "soup." No one else would take her up on it though. Despite the freezing cold ocean water, Summer loved playing in the surf and jumping over small waves. She and I would run hand in hand towards the incoming waves and then turn and run back towards the sand. Our sand castle turned out on the dumpy side, as usual. I don't know what it is, but I really haven't been able to build an awesome sand castle in a long time. I remember building some pretty good ones as a child.

We hit the playground a few more times. Summer wanted to throw a party one night, but even after making invitations and handing them out, she did not get around to it. They read, "Party 2nite Rock on 7:00." She made one for her dad, Paw-Paw and Amanda. I told her Amanda had the party without us after we went to bed, but she informed me that she did not turn in her ticket so she didn't. LOL Our last night we went to the Santa Monica pier, my main inspiration for the trip. Summer again loved the rides. She wanted to go on the roller coaster twice, but the line was too long. She really loved the scrambler and said it was her favorite. Lexie enjoyed the ferris wheel ride with Summer and Paw-Paw. We didn't make it to all the rides, but Summer doesn't know that. It was late and we were all tired and ready to go to bed....except her. Of course, she could ride forever. Oh to be a kid again...

I'll have to update on the first part of our trip later. It's late and time for bed. Summer's got her 3 month CT scan in the morning. Praying for NED!!! I haven't started worrying yet, but it does set in once the scan is over and we are waiting on the results. No spots please!

No more spots!

Summer's CT scan this morning showed that the spots they saw a few weeks ago have disappeared. It was long morning for me, and when I finally saw the Dr. my nerves were getting the better of me. He checked the results on the computer and came over to me smiling. I knew then we were in the clear. He called it our "Christmas miracle" and it truly was. He already had me prepared to do it all over again and the relief of knowing we don't have to was overwhelming. It wasn't until then that I think Summer knew something could have seriously been wrong with her. Of course, I didn't go into all the details, and she didn't ask too much so it was win-win all the way around. Anyways, time to breathe again and with a happy heart!

22 days and counting

Summer changed the Christmas countdown calendar to 22 days this morning. She is ready for her elf to get here. He won't be here until there are only 12 days until Christmas left. Lucky for us, she didn't get one of those mischievous elves. We surely don't need any extra messes around here anyway. Her elf brings her a gift everyday for 12 days. I know she is going to be very excited to see him. She's already told me we need to get some more jellybeans for him. He eats them everyday. Well, really she will eat them, but we pretend they are for him. Her friend Gavin, who she had a play date with the other day, has already got his elf for the season. She got to hear about some of his antics when they were decorating gingerbread pops last weekend. I think the kids loved eating the cookies and icing the best, but they also had fun putting the little candies on the cookies. Yesterday, Summer and my dad decorated a gingerbread house. They did a great job, and it looks great on our counter top.

We have been decorating all week it seems like. Monday we decorated the condo. Tuesday we did the trees at the lake house. Yesterday, she was asking to do more decorating, but we are all out of ornaments to go on the tree, well almost. ;) Maybe we will hang more lights around the house or make a few more things to go on the tree. Nothing spells fun like homemade ornaments. :) The sand dollars we found in Tybee have almost all been painted and are hanging on the tree. She really enjoyed painting those although hers are painted with a single color and then gone over with a glitter paint. Nothing too artsy, but there are still a few left to do.

There are 6 days until her next CT. It's next Thursday for all you non-counters. I am not too anxious about it, but I'd be lying if I said that I don't think about it and worry at times. It's like her life is on the line. And, that sucks! Parents should never have to have these thoughts about their kids. But, they do. Every day. I know I am not alone. There are so many sick and hurt people in the world today, but it's just part of life. Although it is not always easy, the best thing to do is to accept what you get and make the best of it. And, that's what we do.

Limbo land

It really does feel like we are slipping and sliding right now. Our feet have been knocked out from under us and we are in for some sort of ride. Dr. Gratias called on Saturday to say that her CT scan showed something in the lungs. While they are not certain it is cancer, it is a big possibility. My heart was broken all over again at the thought of more suffering for her. Another surgery. More hospital stays. More chemotherapy. More radiation. Of course that lovely hair she has been growing for the past year, which she wants to be longer than it is, would fall out. When she was 2 it was no big deal, but now at age 4 it might be. She doesn't know. Or if she does, she hasn't said anything. At church yesterday, as we were surrounded by those who love us, there were some tears shed. Memaw, Nanny and myself were tearing up all through the beautiful Thanksgiving music service too. But, she never said anything. She's smart though so I'm sure she knows something is up with somebody. I want to wait until we know for sure though to bring the blow down on her. That doesn't even sound right. I should never have to do that. But, if it is cancer, it will be fight war.

There is hope though. It's like a ray of light shining through the dark clouds. We got copies of the last two CT scans and took them to our neighbor who does Clint's scans. His first impressionwas not cancer. However, he is not familiar with the Rhabdoid tumor that Summer was diagnosed with. Two other doctors, who are familiar with it, told Dr. Gratias that they were concerned so he sent a copy of her CT scans to Chicago. That doctor should be getting it today. Our neighbor said he would not rule out infection and would definitely want a biopsy if it was up to him. So, now I am hoping for a fungus or something. Anything, but cancer!!!

Summer has an MRI of the brain tomorrow. On Wednesday, we should have a clearer picture of what is really going on with her. For now, we wait and pray.

NED -- WOOHOO!!!!

The results are in for the scan and they are great! Praise God for letting my baby be cancer free!!! I still don't know how the ECHO turned out, but it isn't as important to me. Maybe I'll get those results tomorrow. For now, I am celebrating the fact that she is cancer free. Yes, I know I am repeating myself, but I'm happy to say those words over and over and over again. I could never get tired of her being cancer free. What a blessing she is in my life. She makes me want to be a better person, a better mom, everyday I am with her. Even when I am away from her as I am now. My mom said she was a pro at all of her appointments today. She only shed one tear during the port accessing and my mom didn't even have to struggle to get her shirt off. Amazing, because that has never happened with me. Usually when I go to pull the shirt up, the struggle begins. Luckily, the guy who did the CT scan goes to our church, so Summer was familiar with him and I don't even think she had anyone holding her hand (or in the room) during the process. I'll have to verify that with my mom tomorrow. I'm so proud of my baby and missing her sooooooo much right now. What I wouldn't do to have her in my arms right now. She'll be getting lots of hugs and kisses when I get home. I just wish I knew when that would be. Maybe tomorrow because Clint says he's done with the treatments, but maybe he'll change his mind. He's only gotten 5 of the 6 doses offered so far (he chose to skip his 10 p.m. last night). Plus, his bilirubin and creatinine are getting high so they might just cut him off soon anyway. He's almost as yellow as a banana. In his mind, he is. He says the banana just looks more yellow because of the brown spots. :p Despite the agony he goes through a few hours after each dose, we have both managed to have a few smiles and laughs this stay. So, for that I am also thankful.

It's that time again

Today is scan day for my little girl. I will not be able to be there with her as she gets her ECHO and CT scan. I'm sad I won't be the one holding her hand, but that just wasn't possible since I'm with her Daddy at the hospital over 100 miles away. Am I nervous? Yep. It's only 6:20 a.m. here, and I can't sleep anymore. There is nothing I can do but sit here and wait. And, worry. I'm going to try to do as little of the latter as possibly, but she is my one and only. There isn't much to distract me here either. I've got a book which I might get lost in for a few hours, but she'll never be far from my thoughts.

I got to talk to her last night and she is sounding like such a big girl on the phone. Her voice sounds older. Why is it so hard to watch your baby turn into a little big girl? Last year, this is the week my baby started having blood in her urine. She was so innocent then, and now she has seen pain and suffering that a lot of other kids will never have to know (Lord willing). Her puffy baby cheeks are long gone. Her excitement to go to the doctor (yes, she was excited last year when we first went to the doctor to see why she was peeing blood) is definitely gone. Today she is hungry, but unable to eat until after her CT scan is done. I guess I am lucky in that respect that I don't have to listen to her repeat over and over how she wants to eat. Oh, but I do wish I was with her. I miss her so much having not seen her since last Friday.

Yesterday, my aunt Leisa took her to Playgym so she could be part of the Valentines party. I asked her if she had fun and she said, "Oh yeah!" Tonight, Memaw and Nanny are taking her to the church Valentines party. I'm missing so much it seems, but I can't be there every moment of her life. I will be back for the official day though so hopefully we will do something fun to celebrate it together. I really hope Clint is feeling up to celebrating too.

Hallucinating and such

Yesterday was by far the roughest chemo day we have had so far. Even with the pre-med of Benadryl, she had a reaction to the Iphos. She ended up biting her thumb and causing it to bleed which warranted a band aid and no more sucking. That was before 1:00 p.m. She briefly napped after the Benadryl, but kept waking up in a fuss. When I got back to the hospital, she was upset and I got her to calm down, but it took a few minutes. That didn't last long and she ended up getting some Ativan which should've knocked her out. It didn't. Not even close. She had been twitching and seizing since getting off the Iphos. so that is why they gave her the Ativan hoping she would be able to relax. No such luck. She didn't have control over her bodily movements. She was upset because she lost her thumb. The doctor ordered a CT scan of her brain and EEG to make sure her brain was okay. It was.

We played Pretty, Pretty Princess, but she couldn't even hold the pieces of jewelry or put them on. She could barely stay sitting up. It was not a pretty sight, but I was trying not to get too freaked out. Clint picked this time to come and visit us. He was pretty upset seeing Summer in such a helpless manner.

My mom came by to visit/help after work. We watched Summer pitch a fit to ride her tricycle for a while. She couldn't walk much less operate a tricycle. She didn't understand that though. She just wanted to ride. It took forever to get her calmed down and even longer to get them to give her more meds. I don't know why it was so difficult to get them to give her something else to calm her, but they finally did after 8:00 p.m. More Ativan. It didn't help this time either. After my mom left she started hallucinating. She saw a crab, smiley faces on the floor, a castle on a white blanket, a dog house above my head. She was really tripping out. Reaching for things in the sky, staring intensely at the palm of her hand, running her fingers on the screen of her DVD. It must have been in 3D in her mind. I was tired and ready for bed, but she wouldn't/couldn't fall asleep. I bet I told her fifty times to "lay down" which she did, briefly. Then she would sit back up and make me nervous, but I was sleepy so I just kept telling her to lay down. She wanted to play with her toys. She wanted to watch TV. She wanted to ride the tricycle. All I wanted her to do was sleep. I even took the band aid off of her thumb hoping she would fall asleep if she could suck it. Nope. She didn't go to sleep until after 2 a.m. which is very unusual for this cycle. She usually sleeps all day. I guess her brain was overstimulated or something.

It was a crazy day and I am soooo glad it is over. We only have one more of those cycles left. They may lower the last dose of that cycle by 20%, but it is up to Dr. Gratias. I just hope she doesn't have as bad a reaction as she did this time. She only slept about four hours last night and she is still awake. No naps today and she is still going pretty strong. I hope tonight is not a repeat of last night. If so, Daddy's got Summer duty. :)

Her ANC was over 2000 this morning. Her platelets were around 90,000 and her hemoglobin was above 10. I hope these numbers don't plummet too fast. We are not due back in the clinic until Monday, although the doctor said I could come Thursday if I want to. Seeing as we have been in the hospital since last Thursday I think Monday is soon enough for me.

Shots start tomorrow. We started the swishing with Perodex today to hopefully keep the mouth sores to a minimum. Please pray that we evade a fever this cycle. It would be a first, but anything is possible. In the mean time, we are going to try to steer clear of public places. We did go to a birthday party tonight, but I think that will be it until her numbers are back up. I just hope it is as easy to do that as it is to say it. Wish us luck!!!

Results and a Fever

The CT scan came back negative - NO SIGN OF DISEASE! PRAISE THE LORD!!!

So, we keep on keeping on with her scheduled treatments. Only 4 cycles to go....

Summer was running a fever this morning when she came to my bed. I didn't take it right away because it was 5:00 a.m. and I wanted some more sleep. I got up around 7:00 and took it. It was only 98.6 F under her arm. That didn't seem right so I retook it in her mouth - 100.7. Then I changed thermometers and it was 101.1 orally and 99.1 under her arm. I went ahead and made the call since I knew she had a fever. We got the wrong people on the phone and they tried to tell me to take her to the ER. I told her there was no way I was taking my kid with no immunity to the emergency room which is full of germs. She called me back realizing she had gotten our call in error and was paging the doctor (I guess oncology kids should be directed to a different answering service than "normal" kids). We came into the clinic rather than the hospital which is where we still are. They may not admit her. Right now they are just observing to see if her fever comes up since her Tylenol is wearing off. She might get an IV antibiotic here and then go home and come back for another tomorrow. That is fine with me because the last place I wanna go is the hospital. We have only been out about 48 hours now so I'm not missing it yet. LOL We will also be returning there next week for more chemo. So, HOME sounds like the perfect place to me right now. Just waiting to see if that is where we are actually headed.....

Summer wore her Barney costume today. She wanted to wear her Barney slippers and I made the mistake of telling her she would have to wear her costume too if she wanted to wear them. Of course what 3 year old is going to say no to that? Definitely not mine. :) Barney and I are watching Super Why now in the "sick" waiting room where we are avoiding the germs. It felt weird coming in this room since we have never been here before and it is kind of scary to be in the sick waiting room when she has no immunity. But, I was told it is clean in here. ;p I still wish I had my Lysol with me, but it is in the car in our suitcase.

Today we are 2 & 6....eyelashes that is. I really can't believe they are still hanging on. She also still has hair around her hairline....fine blonde hairs. For the most part, her head is smooth as a baby's butt....one without diaper rash. :) Clint and I both love to rub it. Sometimes he teases Summer that he wants a lollipop....her head that is. I haven't seen him lick it in a while though.

Summer and I had a good time singing a little bit ago. I started off singing her "You Are So Beautiful" and then "You Are My Sunshine." Then she wanted to sing "Because He Lives." We sang it over and over and over. I'm not sure why, but she really likes that song and so do I. She is into music like me, but I just hope she gets a better singing voice than I have. If not, she will just have to stick to singing in the car like I do. She loves to dance to music too....just like me. The other day she kept telling me to cut the radio up and she was dancing in her carseat. It was unusual because we were listening to "my" music. Usually she wants "her" music on when we are in the car. But, she was happy with the beat of the music on the radio so we stuck with that. I hope she gets my dancing ability as opposed to her Daddys. He's about as smooth as sandpaper....at least when it comes to moving those hips to a beat. He did dance with Summer a little yesterday, but it made him dizzy. At least he tried. I know they both enjoyed it, as did I enjoy seeing the smiles on their faces!!


************UPDATE***********************

The nurse just came and took her temp. - 101 F. So, we are being admitted....