Chemo-sabe

That is Clint's new nickname for Summer. I am not sure she will go for it since yesterday her name was Mogo Noodle. She just laughed when I asked her if her new nickname was Chemo-sabe. So, I guess we are sticking with Mogo. I don't know where she came up with that nickname, but she really seems to like it.

She started her chemo less than an hour ago. So far she is still playing and acting like her usual self. She has eaten really good today. So far 10 bites of pancakes, 7 pretzels, 20-25 cheetos, 2 peanut butter crackers and some sushi rolls. She also drank about half of a chocolate milk. Last night the Dr. said he is concerned about her weight. When she started this journey she weighed about 33.5 lbs. Now she is just above 30 pounds. She has been eating good since the chemo stopped, but now we are on another round and the nauseating drug is being pumped into her as I type. He says they might put a feeding tube in her if she loses much more weight. Exactly how much, I am not sure. But, that is not something I am looking forward to. Pray that she will be able to keep enough food down to keep this from happening because it would be at least one more surgery. I talked to another mom this morning who has 20 year old who is also under treatment in the children's hospital that has had 3 surgeries for his feeding tube so far. Yikes!!!

My sister came up this morning to give a chance to run to the gym and then home to take a shower. I also cut my hubby's hair which was a first for me. I didn't do too bad. I did better than a
Supercuts hairstylist did on one of our friend's hair the other day. It was WAY crooked. I only had two gaps that don't really look too bad. Maybe in a few days I'll cut it again but go shorter this time. He said he likes it a little shorter anyway. Anyways, the cut looks better than I expected it would and he is NOT going to the hair salon today.

Summer got a few packages in the mail from her chemo angels. I haven't gotten them out of the bag yet, but I did bring them in case she needs some cheering up later. I gotta go. Someone wants me to hold them. :)

We are in....

318.

Yep, I jinxed myself. Either that or we are in a pattern for room assignments. But, I am trying to just be thankful that we are in. Her counts were around 1400 today so we got the green light to start cycle 2. She will get one chemo med tomorrow over an hour and then two the following three days. One over an hour and the other over two hours. So, we will not be confined to the room for a 48 hour period like we are on odd number cycles. That is good news! I am already getting stir crazy and we have only been in the room a few hours. We have already made one trip to the rooftop garden too! It is going to be a long week.

Summer is playing with her Memaw and Nanny in the oncology playroom right now. Clint came over to bring some stuff I forgot and we went down to eat in the cafeteria. I actually got a sandwich that I would say is awesome, for hospital food anyway. :) Then when we got back to the room, Summer asked if she could go to the playroom and I told her she could. Then she informed me that I wasn't going. Gotta love it when the two year old thinks they are in charge. Anyways, I gladly welcomed the break because it gave me a chance to pull out my laptop and blog. I have been slacking the past few days, but we have been busy. I actually had most of the weekend "off" because Summer spent two nights at my mom's house. Yes, she LOVES her Memaw and Nanny so much that after church on Sunday she asked to spend the night with them again. So, I got to hit the sack early last night which I really needed due to the late night I had on Saturday. Anyways, we have been here since about 9:30 this morning. We got our room around 3:00 so we spent most of the day in the clinic. Summer got to play with some of the other kids so that was nice. I also got to talk to some of the moms which was also nice. But, we were ready to get out of there by the time someone was ready to escort us to our room. Do they think we are going to try to escape in between the clinic and the hospital???? LOL Maybe so since they know how much us cancer moms hate the "small" rooms (like 318).

Summer has been eating good all day. She has been feeling good too. She was not excited when she found out we were coming to the clinic this morning, and she was even less excited when she found out we have to spend the night here. She got really upset when they accessed her port this morning. So did her daddy. He left the room after asking me if I needed his help in restraining her. I told him I could do it and he RAN! Well, not literally, but the nurse called him a wimp when he got back. :p She really didn't do that bad once she got over the anxiety of it all. She turns into such a whiny, wiggle worm when she finds out she is going to be accessed, but once you start restraining her she gets even more upset. I tried to tell her to sit still and I wouldn't have to hold her down and possibly hurt her, but it took a minute or two for her to realize that sitting still was the best thing to do. Once it was in, she was good. She just didn't want it taken back out. Thankfully that won't happen until probably Saturday.

I am curious, but not anxious, to see how she is going to feel once these meds start going. I don't remember what the immediate side effects are, but everyone has a different reaction anyway. This round is supposed to be a lot worse than the other, but to be honest the first round wasn't too terribly bad. I think it could've been a lot worse. I wonder if she will be up to the wedding we are supposed to go to on Saturday afternoon. Well, we won't know until then so there is no since worrying about it all week. Worrying is not my style anyways. Anybody else wanna worry for me, go ahead. I'm going to try to have a fun week. Well, as fun as it can be in a hospital. I am really just ready to hit the sack today and get some good snuggling in with my little girl. We've got one more visitor coming tonight and then to bed we will go. I'm glad to have the visitors though. They sure do help to pass the time.

What other choice do I have?

We are at the dr. office. Summer just had her port accessed and she did a great job! She put up a big fuss at first, but ended up sitting in my lap somewhat relaxed and not having to be restrained or forced to cooperate. YEAH!!! She was not happy when she found out we were coming here today. She started crying shortly after her arrival home from Memaw's. She first noticed I had my shoes on and asked where we were going. She's not one to miss a clue. LOL I told her we were coming here and we would be spending the night if her counts were up. Tears started rolling. Neither one of us want to be here, but what other choice do we have? We could skip the treatment all together, but the odds of the cancer coming back to are too great to go that route. So, we struggle on battling cancer one day at a time. I feel fortunate that we are only having to endure one person receiving this type of treatment rather than two. We could very easily have two patients on meds in our house, but God has shown us some mercy. I am thankful for that.

Summer is filling up her sticker chart quickly. I gave her 5 stickers for getting her port accessed without a fight. I think maybe there are too many spots to be filled (25 total), but if I was more consistent with the sticker giving, it would fill up quickly. Right now we have been working on the same chart for over a month. Of course, she has had her share of treats this month. Lots of mail and packages have come addressed to Summer. I am starting to spread them out rather than giving her multiple packages at once so at she will appreciate the gifts more. I think today she may get a Barbie (her 1st one) if she finishes her sticker chart. A hospital admission will definitely fill her chart up.

I hope we get a big room. That is really what I want most to happen today if we are admitted. It is so nice when you have a little fridge in your room so you don't have to leave the room to go get something to drink or eat. Of course, I'm not going to hold my breath that we will get one. There are a lot of cancer kids so we may not be lucky again this time. It seems like every other visit we have the same room. If the pattern follows, we will be in 318 and I DO NOT like that room. I guess I should just be grateful that I have a little girl and suck it up, but it is really in the back of my mind all the time right now. Oh the dread / anticipation.

Summer is getting a book read to her by a volunteer right now. She loves to be read to. This morning while we were in the waiting room, she got me to climb up in the little playhouse. I don't like to go in there until her name has been called and we have signed the paperwork, but I did anyway. Of course they called her name like three times while we were in there and I never even heard them. LOL. Anyways, I read her a book and a half while we were up there. It was funny because she picked a book that I really liked as a child "Alexander and the horrible, no good, very bad day." The bad thing was, it was in Spanish. She wanted me to read it anyway and she just laughed. I read about half of the book, going on and on in words we neither could understand. But, it made us both smile so that was nice. I really do wish they had it in English. Maybe I'll have to get it from the library. I must get off here. It is my turn to read her a book.

Pray that her counts are up so we can get cycle 2 started. I'm ready for some nighttime snuggling with my baby!!!

*********UPDATED***********

Her counts are only 247 so we are free for the weekend. Looks like it will be a pretty nice one. We are going to enjoy the great outdoors since it is less germy than indoor places. Anyone healthy and up for a trip to the park?? We go back on Monday for another try although we will not be accessing the port unnecessarily. That is NOT fun for Summer or me.

A "chili" day

Summer wanted chili for breakfast, so I thawed out some meat and started cooking it first thing this morning. She came and asked me a few minutes ago if it was ready, so we both had a bowl. Well, she had two! She has been eating good the past week. Today she has had a jar of spaghetti, an apple and two bowls of chili. Oh yeah, we had a "chocolate" party this morning with different kinds of chocolate Easter bunnies. We used her tea set that one of my friends gave her (it is porcelain) and pretended to drink tea while we ate some of the bunnies. I opened a marshmallow filled bunny and she wanted the hollow one. Then we both tried the crispy bunnies. My bunnies were gone before hers (she is saving some of hers for later) which is no surprise to me. Chocolate is addicted to my mouth! Or is it the other way around? :p We saved a few to have another party with sometime. While I was explaining the different kinds of bunnies to her, I told her one was crunchy. She said, "Apples are crunchy too." She was eating one at the time, but it was impressive to see her correlating the crunchiness with the two different foods. I tell you she is one smart noodle! (which is NOT her nickname today...lol)

We had a little educational lesson this morning. She got a clock for Christmas which is digital. So, this morning I asked her what the numbers were on it and she told me. Then I said it in time words - "nine thirty eight." She told me there was a three in it and I told her that is where the thirty comes from. Then I explained it would be nine twenty eight if it were a 2. I'm not sure she really understands it completely, but it is a start. When I told her it was nine fifty, she said it was nine fifty zero. LOL We will keep working on this, but it is fun to see her learning a little each time.

We haven't really done much today besides play in her room and watch some cartoons. The first one she asked to watch today was Barney. She REALLY, REALLY LOVES Barney!! We got a few new DVDs from a friend a few days ago and she has watched them both several times. Now she is watching Word World while eating her 3rd bowl of chili. I am hoping the fiber in it will help her with her pooping problem. She has been constipated for a few days I think and BMs have not been easy. It is a side effect of one of the treatments she had. I'm not exactly sure which one, but I am hoping it will all get straightened out. I might need to get her some kind of fiber supplement, but not sure how I would get her to take it. It will probably be easier to get her to eat fibrous foods. I looked over the side effects of the next chemo meds this morning and noticed something a little frightening on most of them ( even some of the last meds). It says after treatment is done, the meds could cause other types of cancer including leukemia. So, the meds that are killing the cancer can also cause it????? I'm not going to focus on this since it happens in less than 5 out of 100 cases, but that really caught me off guard and even scared me a little. I am putting my faith in God though. He knows what will happen and worrying won't get me anywhere.

Well, I am going to try to enjoy our last day of freedom, assuming her counts are up tomorrow. If they are we will be in prison, I mean the hospital, until Monday or Tuesday. :) It really isn't as bad as prison, but it sure does feel like it when you are ready to leave. You just can't get out fast enough!

Sleeping in ROCKS!!!

Oh how nice to sleep later than the sun! At night I tell Summer the sun is going to sleep. Sometimes when it is cloudy, I tell her the sun might not feel good so he is taking a nap. Oh the things we tell our children....well, I tell my child anyway. I have always talked to her a lot and maybe that is why she has such a good vocabulary. Even when she was too little too respond, I rattled on about everything like she could understand. I guess that is why I have such a talkative little girl. She certainly isn't like her daddy in that respect. :) Sometimes it is hard to get her to stop talking, but this isn't the case when she is on chemo. I can hardly get her to say a word. When you want them to talk, they don't. When you want them to stop, they won't. Why is it that it works like that??? I guess that is just another mystery in life that will remain unsolved. I am really glad to have my talkative little girl back. She has been super silly lately which is good because we all need the extra laughs we can get around here. Laughing is good for the body you know.

Yesterday I wrote about her nickname for herself. She has also nicknamed Clint and I - Pickle & Chicken. I get to eat the chicken out of her chicken noodle soup, therefore the name Chicken. I'm not sure where Pickle came from. She says, "It is because you are chicken and I am noodle." ????

Well, she wants to plant some seeds the Easter bunny left her so I'm going to go help her. Today has been great so far. I can't imagine that will change, but you never know.

Counts too low!!!

She's posing! She wouldn't smile, but when I said pick your nose, she did!!! Her new ball cap especially made for her. It will be perfect for sunny days or rides in Mommy's cool car!

She sported it backwards the first time she wore it. She saw her cousin try it on like that, and I think that is why she did it too. Looks like she should be on a ball field!!

Leah blows the bubbles while Summer watches them drift away.

All three monkeys playing....

Summer's ANC was only 144 today so she did not get admitted to the hospital. Her counts are probably low due to the radiation. They go up and down all the time it seems, but this is pretty low. Below 500 is when you are most susceptible to germs. Makes me wonder about the weekend. I hope she didn't catch anything. She didn't have a mask at church which worried me at the time, but not as much as it does now that I know how low her immunity actually is. Oh well, won't do any good now to worry. We will just have to stay away from crowds and sick people. I haven't been checking her temperature regularly, but I guess I should keep an eye on it. So, we have officially hit our first delay. Her counts have to be at least 750 to start the next cycle of chemo. We go back on Thursday to see if they are high enough. If so, we will go in then and get chemo over the weekend. So, it looks like no church next week. :(

Yesterday we had two Easter egg hunts. One at my aunts and another at my best friends. Here are some pics from both

Oh my!She did have some fun hunting eggs. My niece and nephew all dressed up for Easter
She loves that pouty face pose. LOL Great Grandad gives her a dollar for her egg. Cuddled up in Daddy's arms
Summer was not too happy to have to take a pic with Willow & Mason.
One crying, one smiling. Making funny faces is fun!
Today we are hanging out together. We just got up from our nap which was lovely! I am trying to convince her to go to the potty, but she assures me she doesn't need to. We are having round 2 of leftover lasagna which she remembered we had left over from Saturday. Isn't that crazy? I didn't even mention there was any in the fridge, but she asked for it specifically when we got home from the clinic. "I'm hungry. I want some leftover lasagna." She must really of have liked it! Of course, she is my noodle girl. She has nicknamed herself (I think she did it herself) "Noodle." Too cute, huh? She loves noodle. Today she told Ms. Ashley that her favorite food is chicken noodle soup. I would have to agree. Of course, spaghetti is a close second, but it doesn't agree well with chemo side effects (mouth sores and sour belly).

I'm not really sure what we are going to do with our extra days of freedom. Maybe we will go visit my dad. His place is pretty clean and definitely not full of sick people. It is also pretty peaceful with nice outdoor scenery. We may also try to plan an outdoor play date with one of her friends if the weather looks like it will be nice. Maybe we will also go to the carousel since she didn't get to do that last week. I'll just take plenty of wipes to clean the animals she wants to ride. We can never get out of there with just one ride. :)

Here is a video of Summer and her cousins playing on the playground last week.

Easter Bunny Pics

Here is Summer's pic with the Easter bunny.
I have lots of pics on my camera and hopefully I will get them uploaded when we are in the hospital. I know everyone is anxious to see some new pics of my angel. Hopefully this will tide you over until I can get more uploaded. Thanks to the lady, Sonya, who was in front of us at the Easter bunny line on Friday. She took the pics for me so I wouldn't have to fork out the big bucks. It is insane what they charge, but I would've bought them if she hadn't offered to take them for me. Anyways these are my favorites of the ones she sent.