ANC is Zero = no church Sunday

Bummer. Yep, her counts are ZERO. That means she has no immunity. So that means we are lock down from going places unless it is outdoors and there will not be a lot of people around. Even the playground is out now because I would have to wipe everything down and then there is that darn swine flu. Oh well. Life could be worse. Saturday we are still planning on going to my aunts to see all the bikes ride by. There is some sort of bike ride that happens every year and they go by my aunts and she gives them drinks and snacks. I think her work sponsors it. I'm not sure but they give out Little Debbies to the riders. Yummy!!! We will be in the yard away from the people so I think it will be okay for us to go. It will be neat to watch I think. Plus we can always go for a walk on my grandad's farm for a little adventure. I think she will end up spending the night with my mom Saturday night so that means Clint and I will have a night to ourselves. :)

We do not have another planned hospital stay until May 13th. That seems like so far away although it is only two weeks. Still, if her counts are up I would love to get away for a few day. Wish we had time to sneak off to Florida. Lots of people have been going to the beach and it has really got me wanting to go too. I won't start dreaming yet, but it would be nice. I am just hoping they are up before her birthday next week. Her party is still up in the air. We go back on Monday for another count check. She is still on the shots until then. We've already gotten today's out of the way. She always cries before the shot, but it is over so quick and she never says another word afterwards. I can't wait until she discontinues the hysterics and takes it like a big girl. But, she is only two. Well, next week she'll be three. But, I'm sure she will still be my baby! Oh how I love her....

Waiting, waiting, waiting

We are patiently waiting to get the results from her blood work. We have been here since 9:00 a.m. and it is almost noon. All we had done was a little finger prick which did call for a little restraining to get her to let the nurse prick her. :( Good thing we don't have anywhere to be until around 3:00 p.m. The gym I go to is having a car wash for Summer today from 3-6 p.m. Too bad it looks like rain outside. I do have to go home and charge my ipod before we head that way because I was asked to teach a class tonight about an hour ago. I also need to run over my sets and pick one for tonight. It has been a while since I have taught, but it usually comes right back to me. Boy, do I need the workout too?!?! I did have a nice walk this morning, but my head was clouded with thoughts of hospital food. Well, that wasn't the only thing on my mind, but I did think about it. Isn't that crazy? Especially considering the fact that we have no planned hospital stays in the next two weeks.

Summer's belly DID NOT hurt this morning. I don't want to get too excited and think the pain is gone for good, but it is the first morning in a long time that her belly hasn't hurt. Go probiotics!!! She is also pooping better too. Gotta go the dr. wants to see us.

My Baby's Back!!!!

Summer sleeping last week after getting her chemo.

I was thinking back to a few months ago when Summer was becoming more and more independent. I was sad to see my baby disappearing a little every day. She was dressing herself, feeding herself, going to potty alone, playing alone, putting on her shoes by herself and more. Now she rarely does any of these things herself. I guess it is pretty easy to baby her. I mean she is my one and only. Once she's grown, she's grown and that is it. So, although it is a little tiresome to have her want to be by my side all the time and waited on hand and foot, I do enjoy it. "I want you to feed me," she says. I mean, how much longer can she possibly let me feed her? I'm sure in the grand scheme of things it is NO time so I feed her one spoonful at a time watching her toy with me by needing a drink when she sees me with the bite ready for her. LOL. She really cracks me up. She has it all figured out. She is so good at wrapping me right around her little finger. Except for when she whines. I absolutely do not cave to whining, at least not directly. I try to have her ask for things with a smile on her face since she can't whine at the same time. :) At times she will not stop whining, so I just have to stand by my original decision which was more than likely "No" if she is whining. It is quite frustrating for us both, but she will learn sooner or later the correct way to act to get what she wants assuming it is possible for her to have in the first place. Man, this parenting stuff is fun.

Summer playing with a doll on the stairs. She made a bed in the floor with a towel and floor mat. She loves to play with her dolls....with me of course. :)

She's been eating great again today. I guess we don't have chemo anymore this cycle. I thought we did, but according to the nurse we just have to do blood checks this week and next. I wonder what her counts will be tomorrow. She has been eating good all week. She has been playing well too although not much independently. She looks pale so I'm thinking maybe that means they are down. I think they are supposed to bottom out in the next few days and then start going up again. She has been getting her Neupogen shots since we got out on Saturday. She is doing better with them. We don't have to hold her down anymore, but she still does not like them. She almost has her 3rd sticker chart full. Sometimes she gives herself an extra sticker or two, but I guess it is ok. She does have cancer. It is funny though because she gave me a sticker the other day for me taking a nap. LOL. Anyways, she put it on her chart. :p The other day after she filled her second one, I told her I would give her a prize when we got home from our walk. Well, on our walk she found something she wanted more and it was only $1.99 so I went ahead and got her the ugly rubber white mouse complete with long pink tail. YUCK!!! But, she wanted it. She told me it wasn't scary. It was just a friendly baby. I guess she is for the underdog at this point in her life.

Daddy watches her try to cast, but he's no pro either. She gets her fishing skills from him. LOL

We are lucky the fish are this small. I don't think her rod could handle much bigger. :)

We have gone fishing a few times this week, but it is not her cup of tea. She did not inherit my fishing gene. :*( She did play in her pool for a while today so there is still hope she will love the sun like me. Of course, we lathered her up in sunscreen which was the disappearing blue kind. Some of it didn't get rubbed in so she looks a little blue in some of the pics I took. It was fun though and we tried to keep the pool out of the sun as much as possible so we didn't get too much.

Of course she picked out a pink and purple fishing pole!

She loves to practice casting although she more or less drops the weight, walks away, and reels it in really fast.She loves to do "Ring Around the Rosies" in her pool!!!
Hope the next few weeks will be as uneventful as this one has been. It has been nice to just relax and enjoy life -- especially my baby!!!

Miss Piggy

Summer has been quite the eater the past few days. Although she is still complaining of her belly hurting, she wants to eat. I guess it is pain, not nausea. I started her on a probiotic hoping that may ease some of her pain. Not sure it will work, but it is worth a try. Plus, I have added some fiber to her diet. Not sure it is working yet. The probiotic, Culturelle, says it starts working by regrowing the good bacteria 48 hours after you start it. She wanted to try to swallow the pill, but it didn't work and she gagged it up. I have to give her props for trying though because apparently she thought she could do it. I didn't even try to persuade her to do it, she just offered. Of course, I did tell her she would have to eat her yogurt before she could have any ravioli. Nonetheless, she ate her yogurt (which I emptied the probiotic capsule into) and here we are eating ravioli. She has also eaten a jar and a half of spaghetti today along with the rest of her chicken noodle soup from yesterday. She also had some cereal with us at breakfast this morning. Before that she had part of a piece of bread. That was the first thing she asked for this morning. Bread. I think she would've preferred a roll from Logans though because that is what she had the day before for a snack.

She just yawned, but I am pretty sure she will say she does not want to take a nap because she is not sleepy. LOL Oh well, I guess I'll go try to put her down. It could always work. Or not.

Oh what a beautiful morning!

The birds are singing, everyone else is still asleep. Well, my dad is up watering the grass. Summer is in bed with Clint. She woke up to pee around 6:00 a.m. this morning and I told her I would lay with her on the couch for a while. Well, that didn't last long. It wasn't too comfortable so I got up and headed to bed. A few minutes later she needed to pee again, so I told her she could come to bed with me that way I could get a little more sleep. And, I did. I felt like I slept in, but when I got up it was only 7:45 a.m. Our bedroom here is not nearly as dark as the condo. So, once it gets to be sunny outside, I am up. I opened up some windows to let in some fresh air before it gets too warm outside. We are going to have a fun filled day, at least if we do half of the things on our list. We are going to fill up her little pool and go through my old sea shells. I think she might be a collector too one day. Of course her main passion in collecting is rocks. We could also go fishing, but I would probably want to go get her a fishing pole first. I think we only have one that isn't broken and I'm not too sure about it. I had also thought about washing my car which I'm sure she'll want to help spray it off. We brought bubbles and a Baby Einstein movie. It is crazy that she still likes to watch those on occasion. But, maybe she just likes the music. Well, she is up now. Time for me to get breakfast started. After a little cuddling that is.

Home again

We made it home by noon yesterday. I was tapping my toes, ready to go as soon as I woke up. Summer was not so anxious. In fact, she didn't want to leave. She said she didn't want to go to the wedding. She didn't want to go to a birthday party. What she was really saying though was that she didn't want to be de-accessed. As soon as that was done, she was "ready to go to the wedding." LOL

Friday night was pretty uneventful. I played games on the computer while she slept. I finally gave that up and went to sleep myself around 9:00 p.m. Summer woke up to pee on her own and didn't wet the bed so that was good. Around 2 a.m., she informed me that she was finished sleeping. I laughed and said, "No you're not." She told me she was hungry so I gave her a bite of vanilla yogurt. She didn't like it. Her favorite is lemon. I gave her a bite of cottage cheese, and she threw up. Then she asked for a cracker. So, I got up and fetched her some crackers. She ate 4 of them and drank a little juice before we went back to sleep. She woke up with her usual belly ache. Breakfast came, and I ate. :) She wanted nothing. We laid around watching the Disney channel, waiting to be released. Her dreading it. Me looking forward to it. It takes forever to be discharged even when you wake up knowing you are leaving. We saw the doctor around 9:00 a.m. and the first thing he said was that we were going home. However, it took until 11:00 a.m. for the resident to get the paper work done. CRAZY!!!! Anyways, we were both happy campers when we walked out the doors of the hospital.

We came home and bathed. Then she settled on my bed to watch Barney before we napped. On the way out the door to the wedding, Clint and Summer turned around and headed to the garbage can. She threw up. I grabbed some of those handy puke bags from the hospital and we headed down to the car. About half way there, she got sick again. Thank God for those bags! We didn't even have to stop. It was so beautiful when we got there, but rather warm. Summer was feeling okay, even perky at times. But, before the wedding started, she lost it a few more times. Thankfully, it was an outdoor wedding so we just had to walk to the side of the club house by the noisy air conditioners to hide the sound of her gagging. She didn't interrupt the ceremony with it so that was good. She was feeling rather puny, but I think it was because it was warm outside and we were in a cold environment at the hospital all week. She actually went completely limp in my arms once just before the ceremony started. It was scary, but I kept my composure and lifted her up in prayer. I decided we would head indoors where we could cool off and hopefully still enjoy the wedding celebration. It was much nicer inside and she just laid there in my arms. My mom came and held her for a while too. After the main festivities were over, we left and headed back home. She went to bed and has been fine since then.

We had a nice walk this morning. We needed to go to the drug store to get her a fiber supplement because she is still having pooping problems. So, we woke up Daddy and he went with us. It was a nice start to a beautiful day. After that, we ate breakfast. She wanted noodles with sauce. So, I offered her a jar of spaghetti and she ate it. She has also had about half a cup of chocolate milk earlier and some juice with the fiber supplement mixed in with breakfast. The best thing is, she doesn't even know she had the extra fiber! I just hope it works and she can get back to normal pooping. LOL I know it is so fun to read about poop, that is why I write about it. Really, I just want to document the facts at hand so I can look back and remember things that would otherwise get all jumbled up in my head.

We have to go in for more chemo on Tuesday. It is an out patient treatment. She will have to be accessed though. :( I won't be giving her much warning because I don't want her to live in dread. It is so hard to watch her have to go through all of this unpleasantness. But, she is really adjusting well. Yesterday when we were saying our nap time prayer, she asked me to ask her angel to make it where we don't have to go back to the hospital anymore. :( So, I prayed for her not to have to go there anymore after we finish our 8 cycles. Then I told her we were on cycle number 2 of 8 and that we have to do all 8. She said that was a lot. It breaks my heart knowing she will be in that hospital over and over again for the next 7 months (at least). But, we have to do it. I am scared of what the chemo is doing to her little body. I just hope it does not get too damaged. Chemo kills the bad and the good. It cures and it kills. It is necessary though so we will just have to hang in there and let it do what it does. I pray it will kill every cancer cell in her body so she can live a long, happy life. It just has to.

It's called "Encephalopathy"

That is the official name of the side effect Summer has had the past two days. Today it was not as intense as yesterday. She played and played all morning, eating too - Cheerios, dried strawberries, cottage cheese, a bite of tomato and a few bites of chicken. Then after they started the Ifosmafide, I watched her looking for any sign of disorientation since it is the one that causes it. About an hour and a half into it, I notice her kind of lean to the side when sitting on the couch so I decided it was time for us to get into bed and watch TV. Prior to that, she was a happy and playful little monkey. About 5 minutes or so after we got in the bed, she curled up and started sucking her thumb disregarding her favorite cartoon. I knew she was starting to feel the effects of the drug then. She slept and then stirred a little. I noticed some twitching in her limbs, so I called the nurse to let her know. She saw some rapid eye movement / blinking which she said she also saw yesterday. So, they went to tell the doctor and the get Benadryl ready in case it got worse. She starting whining a little, but not nearly as much as yesterday. Her eyebrows were moving up and down and the twitching was more noticeable than yesterday, but maybe that is because other than that she was laying still. Yesterday she was swaying and moving around more when the encephalopathy occurred. Today it has lasted longer even after they gave her the Benadryl. She will sleep and periodically wake up and twitch or cry then drift back off. She also opens her eyes and looks around a little, but doesn't really say anything. Today she has been alert enough to wake herself up when she needs to pee so that has been a blessing. She has only thrown up once and that was about an hour or two ago. I could hear it coming up and got the bag, but didn't get her up fast enough to make it all in the bag. Thankfully she had a pad under her so we didn't have to completely change the bedding.

That pretty much sums up her day so far. She is still coming in and out of consciousness, sucking away on her thumb. It has a new sore. And, the old one is back! I hope they do not actually start hurting her or looking too raw. That thumb has been well used this week for sure. I wonder if she will put a bandaid on it next week so it will get better. I'll just have to wait and see I guess. That's the way life is anyways. You never know what is going to happen, even tomorrow. I mean you may have plans, but something could always happen to completely change them. I never imagined this is the life I would be living, but here I am. I'm not going to let it get me down though. When life gives me lemons, you can be sure I'm going to try my best to make lemonade!!!

The calm before the storm

That's what that nap was. We all knew the chemo was going to have side effects, but so far they have been pretty mild (in my opinion anyway). Today Summer had what I guess you would call a neurological side effect. Ifosmafide has the possibility of causing dizziness, agitation, confusion, and seizures, although these are the less common side effects of the drug.

Summer was sleeping beside me on the bed and I was talking to our preacher. She woke up around 11:45 a.m. and started crying. I leaned over trying to calm her, but it got progressively worse. I put her in my lap where she continued to cry and writhe and twitch. I couldn't soothe her and she wasn't responding to me in a coherent way. The nurse came in and then went to fetch the doctor. A team of people came in to help. The doctor thought it was a side effect of the Ifosmafide rather than the Etopiside which was being pumped into her at the time the "storm" happened. So, they took some blood to run labs and gave her some Benadryl to help calm her. She calmed a little and they left. Then I realized she had peed on me and the bed so I had to get her to the bathroom so she could finish in the potty. The preacher ended up helping me get her there not sure what to do, but willing to help. I am so glad he was here. She was a jumble of wires since she had two machines hooked up to her. But, I got her on the potty where I convinced her to finish all the while she was still upset and not back her to "normal" sleepy self. My mom walked in just after we finished getting her clothes back on her and the bed changed (thankfully they sent someone in to this for me). I gave her to my mom who apparently has the magic touch and she calmed down and drifted into a somewhat peaceful state. After getting the okay to go ahead and take my break, I left Summer in my mom's arms. What in the world would I do without her? Without either one of them????

Anyway, it was a pretty scary time, but we made it through it and she has been resting peacefully since then. She has peed on herself 3 times today, once on me and once on my mom. Thankfully we both had extra clothes to change into too. The labs came back and everything looked pretty good, nothing too alarming anyway. They decided she just had toxicity from chemo (or something like that). Tomorrow I think they are going to reverse the order of the drugs. I'm not sure what that will change, but I hope we don't have another episode like today. It was no fun, but like I've said before, it could've been worse. I'm glad the storm blew over relatively quickly 30-45 minutes, but I sure hope we don't get anymore tomorrow or today for that matter.

I'm exhausted so I think I'm going to go snuggle in bed with Summer. Hopefully the rest of the day will be uneventful. One more day of chemo this week and we are through until next Tuesday. Yeah!!! I can't wait for Saturday because we should be going home. Oh to sleep in my own bed again....

Resting Peacefully

Summer is down for the count. She had a really good and playful morning. She woke up to the usual belly ache. But, she ate some bread that her daddy brought her from Outback last night and drank about 4 oz. of water. So that was awesome!!! Then we played and laughed and played some more. Her daddy brought her some dried strawberries from his cereal bowl which she gobbled up as soon as she got them. It is so good to see her eating today.


Chemo started around 9:30 a.m. this morning. She didn't get tired and snuggly until about 10:45 a.m. She wanted me to hold her, so I took her in my lap and she fell asleep. Then I put her in the bed and had a snack. Now a little me time. :) My mom is actually taking off half a day today to give me a break. So, I am going to go home and shower since it has been two days. I know, gross. Then I am going to meet my hubby for some lunch. Not sure what I'll do after that, but hopefully I do something for me instead of needlessly rushing back to the hospital. It is crazy how that works. I am usually ready for the break, but when I get home I feel the need to hurry back and be with my baby. Funny how that works.


Yesterday was not too bad. She didn't eat anything until just before bedtime when I asked her if she wanted some popcorn. She said yes, so I ran down to the parent kitchen and popped some. She ate some and had a little water so that was a nice way to end a mostly sleepy and foodless day.

Well, major breakdown!!!!!!!!! Gotta go........

A sleep filled day

She loves the carousel!!! It always brings a smile to her face.

This hat is so adorable, but she won't wear it....or any other one for that matter.

Today Summer did not react as well to the chemo. She asked for her blanket about 15 minutes into the Ifosfamide and then went to sleep. She woke up when the alarm on the IV machine went off. She tried to take her Zyrtec, but it made her throw up. She hasn't eat all day, but the doctor said she may not eat this week so I am not too worried. She has been sick a few times today, but the only thing in there to come up is stomach juices (as my best friend calls it - she is pregnant and has had a lot of nausea with this one). It is a really funky color of green/yellow. It almost glows and I think it might actually glow in the dark if there was no sun to light up the room. Anyways, she has been asleep most of the day, thumb in mouth.

My sister was up again today so I went home to try to clean house. I got it uncluttered before she called to tell me Summer was sick and wanting me. So, I put some clean clothes on and headed back to the hospital. No time for a shower today. But, at least my house is neater and I did get one of the bathrooms cleaned.

Summer's friend Willow visited her, but she slept most of the visit. Willow still had a good time playing with Summer's toys, but every time a hospital employee came in, she ran to her mommies side. What is it with kids being fearful of the staff? I guess they don't expect them to do anything fun with them.

Summer got some clown costumes from the Princess Alexa foundation a week or so ago. They sent her an awesome box filled with lots of clown accessories. She loved it! We had to paint her face at 6:45 a.m. one morning last week.

Here she is in the clown wig. I have a matching one too that I just so happened to get after Halloween last year.

She's awake so I'm off for more snuggling.

Quick Update

Summer is still doing good. She is playing and eating!!!! She has asked for a hamburger for dinner so I am going to swing by Krystal and pick up a few. Can't hurt to have too many, right?? My mom says if you don't have any leftovers, you didn't cook enough. I am figuring the same goes with takeout.

I'm not sure what time chemo starts tomorrow, but she will get it over 3 hours. I am hoping our days goes as well as today, but that would be hard because it was almost perfect. We might even be getting a BIGGER ROOM!!! Can you believe it? I'm not holding my breath, but I did ask when the mom told me she was leaving. It will be a new room for us, but it is a "big" room so its is just exciting to think about. LOL It is hard to sit in a small room all day bumping into the walls and everything trying to get to the bathroom. I hope no one else gives me a fight for it. Oh man, this cancer stuff is such an adventure!!!

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.

Rise and Shine!

And give God the glory,glory,
Children of the Lord.

I just had a nice walk on the riverfront, and it was so beautiful outside. All the colors in the sky were reflecting off the water, and it made me wish I was a painter. But, I'm far from that. I do like to try to be artistic, but I just don't think I'm a natural. I have a pile of crafts in a folder for me and Summer to tackle. She is pretty artistic, I think. But, she will not do something that she does not think she can do right. I got one of those little stained glass projects for her to paint, but I have yet to pull it out. We have been pretty busy, but we have managed to do several crafts thanks to all of our friends who have been spoiling Summer to death. I can't take all the credit for that. Not now anyway. :)

The other day she got a package from one of my friend's soon to be MIL that had a monkey project. She wanted to do that right away, but her cousins were over and we were fixing to go to the park so I told her we would do it later. Well, Friday we went to the clinic where the amazing Dr's. and nurses de-accessed her port while she was still asleep (under anesthesia). They also cleaned up other tape residue that was all over her. How awesome is that? When she woke up that morning and the first thing she said was, "Mommy, are they going to take my port out?" To which I answered, "Yes." I'm not sure if that was a mistake or not, but it was followed by 10 minutes of crying about how she didn't want them to take it how. How she didn't want to go to Easter. They could just leave it in. And, so on. It was quite frazzling, especially at 6:00 in the morning, but I managed to keep my cool. I tried to calmly reassure her, but she was insistent that they should leave it in. So, after all of that fun, we headed to the hospital. When we got there, I told the nurse what Summer had said when she got up and how she had actually started talking about it on Wednesday morning. Oh the dread in my little baby girl who hates to have bandages taken off because it hurts. Anyways, they spared her the pain and I am so, so thankful for that.

So after the treatment when we were back home, she got to do her monkey craft. Clint helped her stuff him and she has carried and slept with that thing around all weekend. Well, until last night anyway. Last night she discovered a little pink lamb that my friend's mom gave to her. She also got anther cute animal this week that she really likes it is a duck with some crazy hair. I want to thank everyone for everything. I know I will never get around to writing individual cards because I can't remember everything, but I am truly thankful for everything. Distractions are good and we have had a lot. Summer asked me the other day why people keep sending her cards and I told her it was because they cared about her and were praying for her. She is actually going to get her first Barbie this week. One of my friends sent her one and I have been saving it for the right time. I think this week will be the week she really needs a pick me up. The last time we were at the hospital she wanted to play with Barbies, but I guess they are in the "sick" playroom not the oncology playroom. So, she did not get to. Anyways, I've strayed from my point which was "THANK YOU ALL SO MUCH!!!"

We had a pretty good weekend. A few bike rides, a puppet show, Easter egg dyeing, and Barney. Nothing too crazy. I don't think Summer is really a fan of dyeing Easter eggs. After the first round of it, her fingers were stained with dye which I'm sure bothered her. Let's just say she had it all off, except under her fingernails, when she was done taking her shower yesterday. She washed herself like a big girl, and I dried her off and put her clothes on her. I think she has reverted on the dressing herself. I know she went through a phase where she wanted too and now she is happy to let me help her, I mean do it for her. :p Of course, that goes for eating too. She likes for me to feed her. So, I guess she is still my baby after all.

Yesterday she went back and forth as to whether or not she wanted to spend the night with Memaw. At first she didn't, I think because she didn't feel good. She threw up twice yesterday. Once right outside my car in the parking garage. You could clearly see the sugar cookie and spaghetti. I know you're thanking me right now. LOL Anyways, we went up and got a bucket with water and cleaning supplies and headed back down to clean it up before any of the neighbors saw it. Clean up was surprisingly easy and Summer helped. All day her belly hurt and the only thing she ate was strawberries. I guess I should be thankful for that because they don't really get gross in the belly, at least they hadn't yet. That time it went all in her lap (and almost on my new photo album with our spring pictures which were thankfully spared). That led to her shower. Right before this had happened, I had read about a puppet show at the Creative Discovery Museum that was at 3:00. Well, when she got out of the shower it was 2:57. I told her I guessed we wouldn't go since she got sick, but she still wanted to go. So, we hopped on our bike and raced to the show. We were probably 10 minutes late, but it was easy to follow so we weren't lost. It was a really cute show that one lady did and she is very talented! Summer must have been feeling better after that because she ate a plate of lasagna because I am "a good cooker." :p Yes, she does light up my life. Then she wanted to know when Memaw was going to be here to pick her up. She got her daddy to write the Easter bunny a note so he would know to go to Memaw's house, and I put it on the table. I hope he saw it. LOL

I am excited about the day ahead. Lots of time with family and friends. I hope Summer enjoys the egg hunts. We haven't practiced, but I figure either you got it or you don't. It's not rocket science. I don't think she really cares if she wins anyway. Life is all about having fun and enjoying the time you have with others. Well, I guess to me anyway. I'm sure there is more to it than that, but that is my bottom line. I want to enjoy the time I have on this earth. One thing I do enjoy doing is going to church. I didn't used to be able to say that. I have had a "favorite" preacher for years (who I will leave unnamed at this time). Well, I guess he is my 2nd favorite now since I've been attending my most recent church. Anyways, I didn't used to look forward to going to church like I do now. My favorite preacher, I mean 2nd favorite, is just too far for me to drive (that's my excuse anyway). But, now I look forward to going on Sundays. I really love the church I go to. I am hoping Summer will buddy up to some of the kids at some point, but for now she is still a mommy's girl. Hey, I better enjoy that while it lasts. And who knows how long that will be? One day I'm sure she won't want to sit on the same aisle as me. At least that is how it was when I was growing up. Sometimes we did sit with our parents, but other times we sat with friends. I am just glad I am at a point in my life where I am happily attending a church and wanting to get more involved. I think it is good for Summer too. She likes to hear me pray. At bedtime we usually say, "Now I lay me down to sleep, I pray the Lord my soul to keep. The angels watch me from above, God bless me and everyone I love. Amen." Then sometimes I say another prayer. She sometimes likes for me to pray twice. Sometimes she will say it with me. She used to say it by herself, but you know how that goes. :)

I guess that wraps it up. We are off to the hospital tomorrow for our last radiation and our 2nd cycle of chemo. It is an in-patient treatment so we will be getting some good night time snuggling in. That's what I am looking forward to anyway.

Fun-filled days are here to stay

Wouldn't that be nice?

We have spent the past day and a half with my sister and her kids. The kids had a great time destroying the place, of course that is what happens when you have a lot of stuff in a little space. :) Mix that with three kids and you have a huge mess. Funny thing is, I only have one kid and the house is usually still a mess. Can I count Clint as a kid? If so, put me down for two messy kids to clean up after. I just love being the mom. Really, I do. It's one of those thankless jobs that is rewarding in its own way. No monetary reward, unless you get lucky in the the laundry room like I do on occasion. :) But, I'm not sure you could put a price on it any way. I would be WAYYYY expensive! LOL

Yesterday, we started the day off with a walk to the Creative Discovery Museum. The kids always love to go there. Summer hasn't been able to go to her classes in about a month so she was glad to get to go too. She wore her mask with complaining. That was nice because I didn't have to constantly worry about her breathing in all the germs in the air. Plus, she has had a bandage on her thumb for the past two days due to a sore she made sucking it so I didn't have to worry about her hands going into her mouth. YAY! I guess that is the good in the bad. Even though she got the sore, which obviously hurt her if she was going to keep a bandage on it for 2 WHOLE days, she's not constantly putting germs into her mouth. So, maybe this will break her of her habit. I'm not going to hold my breath. Besides, I'd be kind of sad to see it go. It is one of the only things that keeps her my baby. I feel like she is completely a little girl now. No more baby, especially if this thumb sucking stops. Her voice even seems like it has changed. Why do they have to grow up so fast?

After the museum, we walked to the playground. Then, we had to go have ice cream because the Dr. gave Summer a dollar at her appointment that morning specifically for an ice cream. He didn't know we go to Coldstone. LOL I'll take it though. I love Drs. who give you an excuse for getting ice cream. After loading up on suger, we headed back to the house for some indoor fun. We made homemade pizzas which was fun. Leah was especially proud of her pepperoni pizza. I made a beef pizza which Clint finished off as soon as he got home. He said it is better than any pizza he's had besides Lupi's. I think it was better than theirs though. And SOOO much cheaper! Of course I might be biased. :) After that we played with a jewelry craft kit one of my neighbors gave me. We all loved it and had fun creating our own designs. Auntie read the bedtime story and we were all in bed by 9:30. YAY!!!!

Today Summer and I got up and went to her treatment. She is doing really good. She is not looking forward to getting de-accessed from her port tomorrow. I think she asked about it yesterday. So, I know she is already dreading that moment. The worst part (I think) is when they take the bandage off. She does not like for ANYONE to take ANYTHING (that is stuck to her) off. Thankfully, they do make some stuff that makes the bandages come off easier, but it still has to kind of be worked under the bandage. Today they forgot to take the things they hook the monitors up to (with little metal button like centers) off before she woke up. So, she still has two of those on her shoulders. They will be there until tomorrow unless they get stuck to her shirt and accidentally get yanked off like they did the other day. :( It seems like they have different people everyday doing the treatments, so I have to remind them each day to remove all things they stick on her before she wakes up. Guess who forgot today? Yep, me. The anesthesia guy yanked the temperature probe from under her armpit as she was coming out of sedation today. What a way to wake up! My poor baby.

After returning from the Dr., where she ate 1 1/2 "no-icing" pop-tarts, we had breakfast. Then we hopped in the car and went to the River Park where we played on the playground and blew bubbles. I got on the swings with Leah and made myself sick I went so high. Yep, I'm getting old. I wonder what it would be like if I went to Six Flags and rode all the rides??? We picked up my mom for lunch which was nice since today is my sister's 25th (she wishes) birthday. Love ya Sis! After lunch we returned Memaw to work and headed to the Aquarium where I used up my last bits of energy. Then we headed home and said our goodbyes. Then Summer and I collapsed in the bed. I LOVE NAPS!!!

I forgot to mention something funny that happened the other day. Remember that sore on her thumb? Well, when we laid down for a nap a few days ago, she asked if she could suck my thumb since hers had a bandaid. LOL It was so cute! I told her just to suck her other thumb, but she didn't even try. I let her try to put it in her mouth (yes, my hands were clean :p ) but she quickly realized it was too big. And, I'm sure not nearly as tasty.

I'm waiting for her to get up from her nap. Clint is warming up dinner. Man, that sounds funny. Oh well, he got lucky for looking good here. I guess I should get off here and go thank him for fixing dinner (aka heating up the leftover chili from yesterday). I wonder if I can talk him into making dessert too???

4 days to go

Well, 4 more treatments anyway. We won't be done until the day after Easter which is the same day we start our next chemo cycle. Boy are we looking forward to radiation being over!!! We are enjoying another lazy day at home. Radiation was a blast this morning! Right. Actually, Summer decided that today she did not want to take a "nap" at the hospital. Well, of course, she did not really have a say so in this matter, but that did not stop her from voicing her complaints. :) She didn't want to lay down on the table either, which she hasn't on any of our other visits anyways. I always carry her back to the room and sit on the table holding her until she loses consciousness. Today she got to help knock herself out. She pushed the medicine into her line until it started working (a matter of seconds) and then the Dr. finished putting her under. Then they took her limp body from my arm and laid her down on the table to get her positioned for the treatment. She gets a gas mask while the actual prep and treatment are going on. She wears it all the way back to recovery where she wakes up. Sometimes she starts to regain consciousness a little early and tries to sit up on the stretcher. But, the past few times they have given her enough medicine to keep her under until we are in our recovery room. Then we transition her to my lap where she snuggles me for 15-30 minutes. She always seems to recover better in the clinic than in the pediatric surgery recovery room. Lucky for us, we are out-patient this week so we get to recover in the clinic.

This morning she wanted to eat before we left home. Today is actually the first time she has WANTED to eat before radiation. Usually I just wake her up and take her straight there, but she has been sleeping on the couch the past two nights so she woke up when I was getting ready. (another reason I love her sleeping in the back part of our room in her bed) She asked for grapes and tomatoes. LOL Yep, she is back to her old self, for the most part anyway. She ended up eating a pop-tart after her treatment. We are out of grapes and she never mentioned the tomato again. She also just had some chicken noodle soup which seems to be her favorite thing now. We work on a can all day long!

She is still complaining of belly pain, but she still will not take the pain medicine. Today she did stick her finger in a drop to taste it, but she said she didn't like it. Maybe one day she will change her mind, but for now I am not going to force it on her. That wouldn't work anyway and would probably only end up with us both in tears.

We may go see the Easter bunny sometime this week. I showed her the picture from last year which she wanted to keep. Of course she bent it a little so now it is not good enough for her. She is a little OCD when it comes to things being broken or bent. The funny thing is, in the picture last year which was taken in mid-March, she was wearing a tank top and shorts. Today she has on warm pants, a long sleeve shirt and a jacket. Oh, and a toboggan because it is so cold outside! Wouldn't it be neat to have those pics side by side? Well, the day isn't over yet....

She had an awesome day again yesterday. Lots and lots of smiles and laughter. It does a body good, ya know! I am so thankful for days like that. If it weren't for the good days, I don't know how I would cope. I am trying to lean on God to get me through this. He has been there every step of the way. I can see Him in so many things in life, speaking to me it seems. I have never really seen so much irony in life as I do now. I guess it takes something big to make you notice little things in life. There have been so many coincidences in the past few weeks, I can't count them on my hands. I ran across this blog post today. Seems like He is always there, right around the corner waiting to give me a new lesson in life. The key is to LISTEN. That is something I probably need to work on. Did I really say probably? :)

A day of rest

We are chillin' in front of the TV today. Summer's favorite cartoon, "The Big Comfy Couch," just came on so she is happy as a lark in the floor eating her cheese toast and laughing. You know they say laughter is the best medicine. It is so good to see her in good spirits. The past few days have been wonderful. I am dreading next week, but I am going to try not to think about it until Sunday night. Wish me luck with that one....

Here are some pics from the past two weeks.


Summer is very talented. She can watch TV upside down! One minute she's in engrossed in the show...the next she is sucking the thumb avoiding the camera. Did I mention she can clip her own nails?


Stick'em up!!!Paw-Paw is a target! :)Napping with Teddy.Petting bunny at the zoo.She tries to feed it too!Making cookies with KatieFlying a kite - our mouths open in amazement! LOL :p our AWESOME kite

Here is my scripture for the day:

First pay attention to me, and then relax. Now you can take it easy - you're in good hands.

Proverbs 1:33 MSG

I hope you too take time to relax. Don't forget to stop and smell the roses every now and then!!!