In a deep sleep

They are keeping Summer pretty sedated for this chemo treatment. She was up for about 4 hours this morning, but has been sleeping pretty much the rest of the day. It is better this way. She is not awake and vomiting. She is resting peacefully it seems. I haven't noticed much seizing or anything this time. A little twitching in the hands, but some people do twitch a little in their sleep. I am so thankful they have been able to keep things under control and keep her moderately comfortable (at least she isn't awake to complain). :)

This morning the first thing she wanted to do was watch videos on youtube.com. Yesterday we watched some and I guess she really enjoyed it because as soon as the she was up, she was asking do it it again. Her favorite video is a Johnny Appleseed video which she played over and over and over. I know the song by heart now. LOL She is pretty good at choosing videos and playing them all by herself on my laptop. I just have to make sure she doesn't get an inappropriate one. She found a few Mickey Mouse videos on there that she liked too.

She ate a decent breakfast: frosted mini-wheats, ravioli, & an ice cream sandwich. I doubt she eat anything else today. She'll probably be asleep for most of the rest of it anyway. Especially if she wakes up and starts throwing up. Then they will give her a dose of Ativan and she will be back in a dream world. I should probably sleep too, but I am too excited about my night off. My mom is planning on staying tonight which is a first. Of course Summer is excited about the sleepover, but I bet I am going to be up here bright and early tomorrow. As much as I love a break, I hate to leave my baby when she is sick. At least she will be in good hands.

Knocked out

The day was pretty good up until about an hour and a half ago. Summer had been asleep pretty much since 11:30 a.m. Around 5:30, she started vomiting. She has done it twice more since then. :( So, they gave her Ativan. She is already on Benadryl and Zophran. Today, she got these two chemo drugs: Iphosmafide and Etopside. She gets those two Thursday and Friday too. They are the evil chemo drugs. Well, the evilest of the evil that she gets.

She had a visit from two of her friends today, Willow and Mason. They came this morning which was best because she was not really feeling the chemo at that time. I think she enjoyed the visit, as did I. My best friend from high school is Willow's mom and it was nice to see her too (along with her sister, Mason's mom). The last time we saw all of them was at Summer's birthday party. Hopefully, Summer will be up for a birthday party on Sunday for another one of her friends. She has already missed one of her friend's parties due to hospitalization.

I guess I'm gonna spend the evening playing Spider Solitaire and watching TV. Looks like my angel is gonna be zonked all night. I'm sure we will be up every few hours tonight to go pee. Last night the nurse helped me remember to make sure she went every few hours. It is a good thing too because I was too tired to get myself up. I hope the rest of the evening is uneventful, but just in case I've got the puke bags ready.

Here is a link to a video from the Princess Alexa Foundation. Summer is the clown about two and a half minutes into the video. She and I both enjoyed watching it. Of course, it brought tears to my eyes......

Chemo Cycle #4

To our good fortune, we are in a "big" room. This is the same room we were in for the last even numbered chemo cyle (which is the same drugs as this cycle). I am having a few flashbacks, but hopefully it won't be the same or as bad. I am scared of this cycle the most though. It messes with her brain and she kind of gets lost in her head and then eventually sleep. Thank God for sleep! I really need some myself right now.

Summer is done with chemo for the day and doing great. She received a drug called Carboplatin over 1 hour around 11:00 this morning. She's been on Zophran every 6 hours since 2 a.m. So far, no visible side effects.

She is eating like a champ. Chili is the food of the day. She passed up her Frosted Flakes, saying her belly hurt. Then I remembered the chili I left in the clinic fridge the day before. When I mentioned it, she wanted it. She even let me leave her to walk over to the clinic. It is crazy because some days she won't even let me walk down the hall to get a cup of ice. Anyway, she wanted the chili so I went and, luckily, it was still there wrapped up in a bag with Summer's name on it. Yay!!! She ate most of it (which I had added a spoonful of fiber to) for breakfast, but then at lunch time finished it off. She wanted more chili. I had brought a can of chili beans from home, so I found a can opener and she ate almost the whole can. I think I am supposed to be bringing her more chili from Krystal, but I'm going to call and make sure before I head back. Tomorrow is chili day at the hospital cafeteria!!!

She also had chocolate ice cream this morning which is a first. Usually she just takes the one bite, and is done with it. Today, since we have a "big" room, I put it in the fridge instead of the garbage. At home, she likes to eat ice cream sandwiches for breakfast after she takes her meds in a crushed up bite. She has also been enjoying those heavenly cookies our neighbor gave us too...working on the last one - a pink fish. :)

Her weight, 32. 5 lbs. or 14.8 kg, is an indication of just how much she has been eating since we got out of the hospital. I am so happy because although she might lose a few pounds when she is not eating, she can recoup quickly. The decrease in appetite usually occurs when her counts drop, I think. She hasn't been very nauseous like she was the first cycle. Or, she is just better at controlling it. I am still trying to figure out the pattern, and there probably isn't a "perfect" pattern, as can be evidenced in another little boys journey with kidney cancer. I have been following his mom's blog, and her mine, for a few months now and I am so very fortunate for how much we are NOT in the hospital. Please pray for them. His name is David.

Maybe writing all the details here will allow me to piece it together eventually. That is if I actually had time to sit down and analyze it. Or, wanted to. I have more important things to spend my time on....like my daughter.

Back in the slammer.... ;)

Summer made counts today for admission. Her platelets were 111,000 and her automated ANC was 900 so that is a green light for chemo cycle 4. I'm glad because that means we are that much closer to getting these cycles knocked out. Plus, she should be getting out on Saturday morning if everything goes as it should. Knock on wood. :) That means she, too, will get to enjoy the fireworks this weekend. Her friend Willow is supposed to come up and watch them too. That will be nice because they haven't seen each other since Summer's birthday.

Summer had a great weekend. She rode on the 4 wheeler with my mom. She is usually scared of it, but this weekend she loved it. She also got to spend the night with her cousins, but not enough nights for her. When I went to pick her up today, she wanted to stay another night. Unfortunately, for her, we had to come here (the clinic) to be admitted.

She has been eating like a horse. She is almost back up to 33 pounds which is what she weighed at the beginning of this saga. The residents said they still saw a few sores in her mouth today, but they look to be in the healing stage. She hasn't been complaining about them which means they must not be hurting very bad. We stopped using the mouthwash last Friday. They didn't tell us to, but I figure if she is not hurting that is okay. The stuff is not good for her teeth anyway. I read the label and it said it may cause them to discolor so when it isn't absolutely necessary, I think we will skip it.

When we got to the clinic today, I got her to sit in my lap and rocked her to sleep. I stared at her beautiful face as she slept. Then I counted her eyelashes. She has 10 on each side. I never imagined I would actually be able to count her eyelashes. She had long, beautiful thick eyelashes and now they are almost all gone. Her eyebrows are thinning out too, as are her nose hairs. I don't even know if she has any of those left. Her nose runs down her upper lip. Not a snotty run, but just the moisture from her nose that has nothing to cling to anymore. It is so hard to see the changes that have occured over the past few months, but she is still a beautiful little girl. That will never change.

Freedom is sweet!

Summer has enjoyed being out of the hospital as much as I have. This morning she asked if we had to go to the hospital and when I told her no, she was full of joy. The smile on her face was so awesome. Sometimes it is hard to get one. Chemo literally sucks the life out of her and she is constantly recovering from it. Clint mentioned the other day how noone told us about all the in between chemo hospital visits for fevers. Every cycle when her counts are bottoming out, she runs a fever and we are automatically admitted to the hospital. Nonetheless, we are trekking through this year trying to make the best of what we can.

Summer loved Chuck E Cheese. She is still at the age where you can go and play a few games, get a few tickets, get your prize and leave. She doesn't need to eat there or use all the tokens before we leave. We probably still have more than half of the tokens we got left. We almost went to a fair afterwards which was in the mall parking lot. However, it did not open for another half an hour so we left. I'm glad too because it was scorching hot outside. I am hoping to get to take her tomorrow evening for a little bit if she is up to it. Don't worry, I will be taking clorox wipes to help combat some of the germs on the ride. :) Even though her immunity is up, she can still get sick like anyone else.

Yesterday, her cousins came up for a while to play. We walked down to the water by the aquarium and let the kids play. When I first told Summer that we were going there, she did not want to go because she did not want to get the bandaid on her port wet. So, that prompted lots of whining. She didn't want to go, blah, blah, blah, whine, whine, whine. Poor girl does not like to get her bandaids taken off because it hurts her tender skin. :( By the time her cousins got here, she had calmed down, but still didn't want to go. When she realized the water was only going to be knee deep and she wouldn't have to get the bandaid wet, she was fine. The funny thing is she likes to wear bandaids on her arms and legs. She calls them "stickers." :) But, you put one on that port and it's like you are torturing her. LOL

We are going to Playgym today. It has been months since we went and since her counts are up and it is not cold and flu season, I think it will be okay for her to go this once. There are only a few "good" days a month that we can actually have some sort of freedom. Then we are going to the Aquarium to watch the penguins swim and hopefully get a butterfly to land on us. That rarely happens to us though, but today is a new day.

Summer got a toy penguin that swims from one of her chemo angels. So far we have just used it in the bathtub, but we may take it to the pool one day. Her angels have been so good to her. She loves it when she sees one of their packages, clearly marked "Angel Mail" on the outside. She has gotten all kinds of neat treats from them: bubbles, a tiny barking puppy, My Little Ponies, books, stickers, a Barney toothbrush......I could go on, but I won't. :)

She has been eating more, but still not a lot. One of our neighbors brought her some cookies last night. They were individually wrapped and decorated and VERY yummy. The best part is Summer likes to share! She will start eating a cookie and then let me finish it. Of course, she very rarely finishes all of everything she has in front of her these days.

My goal is to maximize our fun time for the next few days. She could be going back in for more chemo on Monday. Depends on her platelets. I kind of hope she does get to go in because then we should be out in time for the fireworks. :) Of course, I probably just jinxed myself and the fireworks will not be part of my future. I sure hope not. I just have to BELIEVE. Still working on that one....although the world is looking pretty bright these days. Despite the rain, today is going to be sunshiny for me!!!!!

Going home...and to Chuck E Cheese!

This morning the resident gave us great news. Summer's ANC was 2,400 so that means no more shots and her immunity is up! WOOOOOOO-HOOOOOOO!!!!!!!!! They didn't know that she is supposed to be getting her last Vincristine dose for this cycle today, but I pulled out my road map and showed them. They were also going to give her a shot, but I remembered that she doesn't have to have them once her ANC is over 2,000. Good thing I pay attention to the paperwork they gave me in the beginning otherwise we would be waiting all day for the chemo that the Drs. didn't realize it was time for. I think we will be in again next week for Cycle 4 of chemo. As long as we are out by next Saturday, I will be happy. That is the day of the best fireworks of the year in our town and we have front row seats (our balcony overlooks the river where they shoot them). I am really looking forward to them because they are awesome!!!

Last night she asked me if we could go to Chuck E Cheese when she feels better. Lucky girl gets her wish today. Not sure exactly when we will be getting out, but hopefully not too much later than noon. Then we will go home to rest a bit and get her a bath. After Daddy gets back from his appointment, we will probably head to Chuck E Cheese. She thinks Chuck E is a bear, but I have told her it a mouse. :) She asked me why he doesn't talk even though he is on stage. LOL It is funny the things she realizes. She is very perceptive.

Summer wanted some chicken noodle soup and Sprite for breakfast. Actually, she just wanted to drink the broth out of the soup, but whatever works for her is fine with me. Her mouth is really hurting I think. She has swished twice today already, and I am going to get her to do it one more time before we leave. Well, she is ready to head back to the room. I am so excited about going home, but she is already talking about how she doesn't like to get her port deaccessed......and she needs to pee! Gotta go!

X-ray says: There is no poop!

I am not sure how it happened, but Friday she was full it and today she is not. Maybe God made the poop magically disappear. Too bad he didn't do the same for the belly pain. The doctor says that maybe she is just saying her belly hurts for attention. I don't know about that, but it could be that she is saying it out of habit. I do know that she won't eat and she says it is because her belly hurts. I told the doctor this has been going on for weeks, maybe even months. So, maybe he will do some further investigation. I'm not going to hold my breath though.



We got some other good news. We may be going home tomorrow. Her white blood counts are starting to rise. Even though she was running a fever early this morning, 100.7, we may still get to go if it stays low and does not shoot up again. Her hemoglobin was 7.3 today so she is getting blood soon. I hope we do not have to stay in the room for that because Ms. Ashley is trying to get all the two & three year old patients together so we can meet each other. There is another new two year old patient this week. I have already met the one from last week, but Summer has not.



She is doing a little better today. Still refusing food, but I think the news of going home has lifted both of our spirits, even though she usually says she doesn't want to go home when they say we can. I'm sure she'll be saying that tomorrow when it comes time to deaccess her port. LOL

We got a new camera over the weekend and Summer has been snapping pics like crazy. She has taken almost 200 pics of random things in the room. I am sure I will delete 90% of them, but I'm sure she won't care as long as she gets to keep using the camera. It is just the right size for her which is not why we bought it, but it was nice it turned out that way. Hopefully, it will last us a while and serve the whole family well. I really love that it is so small and portable. No more lugging the big camera to the park! I'm hoping we will get to go there sometime this week.

She doesn't like the flash so I had her close her eyes this morning for this shot.
Daddy takes a little nap, but Summer wakes him by tickling his feet. :)
One of the rare occasions she has eaten during our stay at the hospital.Paw-Paw smiles big for the camera, sporting his new mustache.Daddy says "peace" before he leaves
So far I am not impressed with the quality of the pics, but the lighting in the room is pretty bad and most times the lights are off. I hope they turn out better when we get out of here. We really didn't test the cameras at the store, we just bought the one the guy recommended which was about the same price as the others (Nikon CoolPix S220). You live and learn.....well, hopefully you learn. Maybe you just keep living in ignorance. :p