The new kid on the block

Is there a saying that dogs don't pee in the same place twice? Or, poop for that matter. It looks like I've got another child to potty train. Darn Santa. LOL Shortly after I let Trixie out this morning, she peed on the rug. I know she pooped in "her room" aka the laundry room last night. Not on the pee pad though, but in her usual poop spot in that particular room. Maybe it's time to put down another pee pad in there. It is clear that I MUST have an artificial grass pee pad for the condo unless I make a habit of taking her out. It really isn't that much of a bother and fresh air is always nice for the girls. She doesn't really seem to mind going outside too much now that she is a few weeks older and a little bit bigger, even in the cold. She loved the ice in the driveway earlier this week. Summer is always game for a trip outside, unless she is on the phone with her cousins and Auntie like she was yesterday. I'm not even sure she noticed me and Lexie leaving with Trixie. She was very enthralled in the conversation she was having.

There was supposed to be a grandbaby sleepover on Friday, but it got cancelled due to illness. On Thursday, Summer woke up coughing, very warm and with one slightly matted eye. She had been rubbing her eyes all evening before bed, even after a bath to wash and rinse it out. Around midnight, she came and got me to potty and I noticed she was warm. Her temperature was 100.5, so I found the newly bought children's ibuprofen tablets and got her 1 1/2 to chew up. They were orange flavored, and she didn't put up too much of a fuss about it. But, she did say later that they made her throat feel funny or hurt; I can't remember which. Anyways, we got dressed right away and headed to the doctor. The girls had breakfast in the waiting room - cheese, turkey and pretzel goldfish. Summer surprised me that morning and actually asked for chocolate milk. I can't remember the last time she has willingly, without a fuss, drank chocolate milk. I knew then, she was sick. The next day she definitely put up a fuss about it and only drank the 1/2 glass she was asked to. Well, almost. I let it go since she was sick and not feeling well. She didn't eat very much at all for the next few days. She was diagnosed with some sort of virus, including conjunctivitis -- pink eye. Not the treatable kind of course, this being a virus and not a bacteria. Summer has been pretty good about washing her hands, but has not and will not touch a drop of hand sanitizer. I'm pretty sure this has something to do with her thumb sucking and having tasted it on several occasions via her thumb. My nephew was also sick with pneumonia and unable to go outside. So, the plans for the sleepover were put on hold for two weeks. Summer is counting down the days. She loves, loves, loves, to spend time with her cousins. She also hoping there will be two extra grandbabies at this next sleepover. 2 adults vs. 5 kids -- the odds are great! I might have to join in on this sleepover if I can get permission. LOL

Despite the snow and being away from home, we managed to get through 4 more letters (g, h, i & j) this week. She got a new game, "Sorry," from Katie for Christmas. It is a lot of counting and she loves it so she has been working on her numbers too. Shows like Word World, Sesame Street and Super Why have also played a part in her educational growth this week. I love PBS channels and the quality shows they provide for kids. Sprout, Nick Jr. and Disney also provide some educational type shows, but I still don't let her watch just anything on them. The kids comedy/ soap opera like shows that come on are off limits. No Hannah Montana, iCarly, Wizards of Waverly Place, or The Suite Life in this house. Kids learn too much too fast in my opinion so I like to shelter mine when I can. I like shows that focus on positive values and behaviors rather than violence and negativity. Barney is the supreme master of them all around here. Summer was always a fan and now Lexie is too. At least there is one thing they can pretty much always agree on and that's Barney. Summer does like to watch something other than that, but if Barney is on and she walks into the room, chances are she's going to watch it.

I emailed two schools this week to see about setting up visits so we can finalize where Summer will be going. I've only heard back from one, but I think most schools were closed all week so I'm sure I will hear from the other this next week. The two we are looking at are Bright School and St. Peter's Episcopal School. But, we are not definitely set on either. I'll admit Summer's not the only one who's not looking forward to the school year ahead. But, she's growing up and that's what has to happen. I hope our campus tours give us a clear picture of what would best suit her. Okay, my nerves are starting to twitch. I must move on.

"Slip and slide watch me glide!"

Yesterday, while looking for a thermometer, we found a penguin that should've been in the bathtub. I'm not sure how it ended up in the end table in the living room, but it was crammed into the back of the catch all drawer aka "junk drawer." We must love those around here. LOL So, she transported it to the bathtub for future use which just so happened to be this morning. She also showed off her super slip and slide skills. Ouch!! I remember when I used to slide down the back of the tub and what fun it was. We even soaped it up to get extra speed. Of course, I didn't mention that to her. I can't even imagine it being remotely fun now; more like painful. But, she was having the time of her life, splashing down into the water. She even made up a few different slides which were really all basically the same but with new words.

Speaking of the thermometer, she had a slight fever yesterday morning which got up to about 100.5. Her Memaw medicated her with grape-bubblegum flavored Ibuprofen (a mix) which she did not put up a fuss about. Grape absolutely has to be the best flavor invented for medicine. When I was a kid, it was the orange Triaminic and baby aspirin flavors that I liked best. I don't understand the awful cherry kind though. Do some kids actually enjoy it? Her fever went down and only went up to 99.2 later in the day. She mostly laid around all morning watching TV with me and Lexie. Her first pic was "Frosty the Snowman." Lexie got the next few pics with various Barney movies. I am so glad Summer still enjoys him too. He is so wholesome and also educational. Plus, I know all the songs. LOL Later in the day, I chose the movie "Elf" since it is one of my favorite Christmas movies. Summer enjoyed it too. She has not mentioned decorating for Christmas again, so we may actually hold off until after Thanksgiving this year. That is, unless I find the perfect tree while out shopping one day.

The home-preschooling is going good. She usually always likes to work in her workbooks. She even asked to do that first thing this morning, but then decided a bath with the newly found toy would be more fun. She is getting dressed now which she usually always does by herself. Sometimes she will ask me to help her, but she almost always picks out her own clothes. She definitely has a style of her own. She absolutely loves to stand on her toy box and dig through all the clothes in the closet which are usually new or dresses. She always manages to find the ones I hang in the back that are too big or off season. I'm never surprised when I see her walk out of her room in a dress that won't actually fit for a year or two. She wears a 5 or 6, but sometimes will even wear a 7/8. It's my fault though. I love to shop ahead and usually buy all of her clothes on clearance or at consignment sales. I guess that's one reason I don't care if she has too many because they are all so cheap! I've already got swimsuits for next year and gymnastics leotards for a few years to come. And shoes--too many too count!!!!!!!!!

Well, the school bell is ringing. I don't want to be late. :D

Still "Under the weather"

Summer has still been feverish off and on since Thursday. I called the clinic today, but they said not to bring her in unless her fever goes up. It was only 100.1 when I called this morning. She is coughing and has some drainage, but it is not coming out her nose. Too bad she hasn't learned how to cough it up and spit it out yet.

She got to spend a lot of time with her daddy the past few days since I had a seminar to attend. I'm so glad they are spending more time together. It seems that since his cancer has came back, he has been making more of an effort to do things with her.

Yesterday, she went home with Memaw and Nanny after Sunday dinner at my aunt's house. She came home with a new rock box - a tackle box - with lots of rocks from Alaska. She showed me each of them this morning as soon as she got home. One by one, she put them in my hand. She's so funny about rocks. To some, they are nothing, but she sees beauty in each one. She has quite a collection of them now.

Good times and a fever

On Wednesday, we went to story time at the library. It was St. Patrick's Day, so Summer was sure to wear green so nobody would pinch her. Of course, her clothes were pink, but the accessories were green - necklace, tiara, bracelet and wand. When we left the house, she still wasn't sure she had enough on, but I assured her she did. She was a little leery of story time because she thought I was going to leave her there, but once we were there, she saw it was fun and I would be right beside her. I was really impressed and will try to make it a weekly thing. They read a few books and watched a video. Then they made a book marker with stickers and markers. Summer really loved that. Before we left, I let her pick a few books and then we checked them out along with a few I had put on hold for her.
She was surprised this week with a package from Diggity Kids. She got the complete travel system as a gift from one of the owners of the company. What a nice man! The material is very soft, and she was so excited to spice up her seat in the car with it. Of course, Teddy was right there beside her as always. Thank you so much Diggity Kids for putting a smile on her face and comfort in every car ride!
Yesterday, Summer had t-ball practice again. We ran by Target and picked her up a pink bat and a new tee for batting practice at home. Unfortunately, I had to miss practice and ran off with the new bat in my car too. Clint said she was not too into the practice. He had to wake her up from her nap to run an errand and she was still sleepy when practice rolled around. Plus, I think she has allergies. Last night, she was rubbing her eyes and sniffling so I gave her some allergy medicine.

During dinner, she requested we have family coloring time after we were finished. So, after the dishes were cleared away, we headed to her room to color. After that, we played a few games of Candyland. Then she picked out a few books for me to read to her. I only got through the second one which was "The Sleep Book" by Dr. Seuss. After it, she was ready for bed. Not sure if she was already tired or if the story actually convinced her she was. LOL I am so glad that we have moments like this where we are all together doing fun and positive things. I know a lot of kids don't have these times with their parents.

Sometime during the night, she woke up to use the bathroom. I noticed she felt warm, but just thought it was from the clothes and blankets. When she got up again to tell me she was hot and to take of the warm clothes and put on a short sleeved shirt, I almost shrugged it off again. But, the mommy in me knew something was wrong. So, I took her temperature which was 102.4. Bummer! I gave her some Tylenol and put her back to bed. An hour or so later, she came and got in our bed where she still is. I hope the fever is gone when she gets up. She really didn't have any other symptoms and when I asked her if she was hurting anywhere, she said no. Let's hope it was nothing major because Daddy's going to have her today while I go to a seminar. Maybe I won't worry too much while I'm gone, but maybe I will.

The good, the bad, and the ugly

Okay, so I don't even know where to start. I guess I'll start with the bad news. This morning Summer was running a fever, 101.7, which landed us back in the hospital (same room as last week, 328). Readmitted within 72 hours of last visit? YES! :( She is on a different antibiotic than last week since she has mouth sores now - Meropenem. Her platelets are low (18,000) so I suspect she will get some of those later today.

Yesterday, she wasn't feeling good either. One indication was her refusal to wear her Halloween costume. Yep, that's right she did not wear it. Oh well. She did get a princess bucket full of candy at the church trunk or treat though. She circled the lot a few times, her dog on a leash at her side. :) It was our first experience with trunk or treat and it was a good one. She was ready to leave a little before it was officially over so we gave the rest of our candy out and headed home. She woke up about 3:30 a.m. hungry. I noticed blood on her mouth and hand and thought her thumb was bleeding again. But, it wasn't. Mouth sores were the culprit this time. She hadn't complained about them at all prior to this, only belly pain. Wait, she did cry a little when we were brushing her teeth last night so we got the Perodex out and she swished then. I guess it is a good thing that they are not hurting her too bad. She is still eating which is a pleasant surprise. Taco Bell is her restaurant of choice this weekend. She is probably the only kid in America who hasn't eaten one piece of her Halloween candy yet. Hope she starts eating it soon because I really don't need to eat it myself. I didn't bring it to the hospital with us though because I don't think I could keep my hands out of it. LOL Here are some pics from last night:

That's Memaw with Summer and Scratch

trunk or treat

not going to skip Mommy's trunkShe did pose with a cat! Meow

Summer and Scratch snuggled up together.

Memaw and Nanny dressed up too. Love it!

Summer gets some love from Scratch at Memaw's house last weekend.If I squat to take her picture, she thinks she needs to squat too! LOLTo catch up from last week, we got out of the hospital Thursday afternoon after 4:00 p.m.. I was so ill by the time we got out, that there were definitely no tears of joy or sadness in leaving the hospital for what I thought would be the last time. She had to get platelets and it took forever for them to get to her room. We had plans to go to Boo in the Zoo at 5:30 and still made them although I wasn't sure she would be up to it. She woke up that morning tired and stayed that way most of the day. She actually told me when she got up that we wouldn't be able to go to Boo in the Zoo because she was going to be sleeping. LOL Anyways, we are lucky we only live 5 minutes from the hospital and zoo. We went home and quickly changed and headed out. It was fun although she again refused to dress up. She was stroller bound most of the visit, but got a second wind after we walked through the entire zoo and were headed out. She then decided she was ready to play some of the games they had going on. It was good to see her up and smiling and having fun. She has been so tired and puny lately. I can't wait until her counts are up and she is back to feeling good again. I pray it will be soon and she will stay healthy over the winter months. We have had enough sickness this year already. Although some of the following pics don't mean as much to me as they did earlier today (before we came to the hospital) I am going to include them in this post.

Guess who won at Pretty, Pretty Princess....

The last picture (I had hoped) of Summer in a hospital bed.
Dora and a princess put a smile on Summer's face.

Summer loved the creepy house at the zoo.

SpongeBob posed with Summer.

Memaw and Summer snuggled up together on the hay ride.

I love this picture of my mom and Summer.

I am sad that we are not at home playing with Lexie today, but God had other plans for us. He sure has blessed us in so many ways, but there are always days when not everything goes out way. I am thankful for all we do have and the good memories we have made this year despite all the crap that we have experienced due to cancer. Here are a few more pics from the past week or so I wanted to share.

Summer and Lexie playing in Summer's toy bedroom.

Jonathon had a little too much stamper fun on his forehead before heading to Disney on Ice. No one asked about it though. :)

Leah was excited to go to Disney on Ice for the first time.

Summer enjoyed her second trip to Disney on Ice so much that she gave me a big smile.

Please continue to hold us up in prayer as we wait on scan week to get here. She will be having a bone scan, MRI and CT scan. I've already got scanxiety. Two more weeks to go.

Home with a new blog look

I am loving my new blog layout that Kelly did for me. Thank you!!! Again, the perks... :p

We are home from the hospital. She had been fever free and on antibiotics for over 48 hours. I am not sure we are out of the water and do see us possibly having to go in later this weekend. But, hopefully God will smile on us and give us a few days reprieve at least. Not going to hold my breath though cause I'm sure we'd be back in before I ran out if I did. I am so thankful she didn't keep running a fever once we were in the hospital. PTL! She really just had one the first night we were there. But, they have to give her those antibiotics just to be safe. When she has no white counts, she can't fight any infection no matter how small. I think her ANC was 20 or 40 today (WBC .2 or .4 I assume). Not sure what her hemoglobin and platelets were because I missed the doctor today. I was at home doing my new P90X dvd with Clint. Can you say push-ups and pull-ups? Yeah, there are kinds I never heard of before!!! Anyway, by the time I got back to the hospital, she was already deaccessed and ready to go. Well, except for her shots. We had to wait about an hour for those. CRAZY! I don't know why they didn't have them ready, but apparently it is hard to get labels from the pharmacy to the clinic where the shots are actually drawn up. Summer was ready and didn't want to wait. We finally gathered up all our stuff and headed to the nurses station. Then I saw two nurses from the clinic headed there too. Perfect timing! We grabbed the shots and headed to the car. We never can get out of that place fast enough. NOT our ideal vacation spot!!!

Summer is ditching me for the weekend to spend time with cousins and grandparents. Can't say I blame her, but I do miss her already. She's taking a nap and getting all rested up for the camp out tonight. Kind of wish I was going to be there, but I've actually got other camping plans I think. Who knows? So many options. I'm kind of sad it will be me deciding what we end up doing. Can you say pressure?! But, I gotta take the bull by its horns and steer it. Man, I'm feeling kind of corny tonight. Hope that means its going to be a good one!

Vacation came too soon!

Last night around 7:00, Summer started running a fever of 100.4. An hour later it was 101.1 and we were headed to the hospital. All of her counts are low. WBC is .3, hemoglobin was 7.?, and platelets were 12,000. She has already gotten platelets today and is now receiving blood. Praise the Lord for people who donate their blood and platelets!!! If you are able, you should go to Blood Assurance (or wherever you have to go locally) and donate some too. I don't know where Summer would be without people donating because she needs these products frequently. There are many others like her out there who need these products to survive. So, please give if you can!


Not sure how long we will be here. Haven't heard anything about her blood cultures yet. They are usually all negative. Only once have we actually know the cause of the fevers and that was when she had cellulitis. I am hoping the ones she is having this week are just due to neutropenia (aka lack of white blood cells). Her weight is still good at 33.2 lbs. She is not eating much now though, only one strawberry today.


Not much else to say today. Please keep praying and sending positive thoughts/vibes our way! One more cycle of chemo next month, then scans. Hopefully they will remain clear and we will be at the end of this nightmare.

Up, up, down, up

That is Summer's fever. Last night it got up to 103.9, auxiliary. Yesterday it was mostly between 101 and 102.8 every time we took it. Once during the night and this morning it got down to 98.?. The Tylenol usually doesn't get it that low in between doses though. Maybe more like 100.?. Anyways, those are just numbers. The fact is she is still fevering. She has been on two antibiotics every 8 hours since yesterday morning - Cefepime & Clindamycin. The Cefe is our "normal" fever antibiotic. She has been mostly sleeping and is currently doing just that. I am laying in bed beside her listening to the Barney movie in the background. I thought she was going to watch it, but I guess she is not feeling good and her body wants to sleep.

She is getting blood and platelets today. I'm not sure what her counts are, but I'm sure they are low since she needs those two things. It should be a pretty busy day at the IV pump for us. Good thing all she has to do is lay here.

When we got to our room yesterday (around 4:45 p.m. We got to clinic at 8:30 a.m.....), there was a Anne Geddes Baby Bunny on her pillow waiting for her. It is so precious. It slept in the bed with us last night. Of course, Summer didn't give up Teddy. He is always her snuggle buddy. She did cuddle the bunny baby for a few minutes in the middle of the night, but then she wanted to cuddle me. Aaawwww. LOVE THOSE MOMENTS! She also rubbed my hand and told me I was "so soft." She told me she loved me. Just out of the blue in the middle of the night after a trip to the potty. I even got a hug and kiss on one of the trips. All of these things unasked for, but SOOOO wanted and needed. They are the ones that mean the most. You know, when you don't have to ask but they are offered freely. Unconditional love. I recall a blog post that I wrote 3 years ago on the same subject. Feel free to take a trip back to when I was a new mom and read it. Wow, how time flies, but that love still remains. Now even stronger due to cancer, a blessing & curse. Wait! Did I just say that? A blessing? Although I would never in a million years want to repeat receiving that awful news (no, not AGAIN), I have realized some things I don't think I would've otherwise. Life is so fragile, so unpredictable. If you aren't doing the things you have always wanted to do in life now, when will you? What are you waiting for? Who knows how many more days any of us have? So now, more than ever, I am LIVING my life. I'm not waiting. I try to experience as many things as I can. This cancer has slowed us down a bit, but hopefully that will only be temporary. We should probably be on mostly "house arrest" for the next few months to keep Summer as safe as possible until her treatments are finished. But, after that, when she is feeling healthy again, we will be off to live the adventure we deserve. After all, life is an adventure and you only live once.


P.S. Her weight was 30.9 lbs. yesterday. Not too bad, but she isn't eating much now. Darn mouth sores!

Cellulitis...and a fever

Summer ran a temperature this weekend. She slept most of the day yesterday, but I wasn't too concerned because she didn't have any complaints other than belly pain. Plus, she was already on an antibiotic, Levoquin. This morning she still had a fever, 101.8, so I was getting her showered so we could come into the clinic. When I took off her shirt, I noticed her port was really red. Panic set it. I thought her port was infected which would mean probably two surgeries. When I got here, they looked at it and determined it was cellulitis which a skin infection. PTL! She also has a spot on her leg where she gets her shots. She is hooked up to antibiotics now and will be admitted to the hospital later today. She also has some mouth sores which just sort of crept up on us. I cried when I saw them. Boo, boo, boo!!! Poor little girl.

Yesterday we only left the house to go see the church which was on fire. I heard from a friend via text message. I had to go see it and it was a sad sight. Such a beautiful church, smoke pouring out the windows and flames shooting out the roof. We didn't even get to go yesterday and now we won't get another chance. I guess everything happens for a reason.

Please pray that Summer will recover quickly from the infection and not be in too much pain. She is such a strong girl, but she does not deserve to have to prove it.

Blood today

Summer got blood today. Her platelets are still above 70,000 so she didn't need more of those. She hasn't ran a fever since yesterday evening so I am hoping we will get to go home tomorrow. Of course, I'm not getting my hopes set too high.

Tre came and spent most of the day with her. They had a good time watching a movie and coloring. My mom got off work a little early and came by to spend some time with her too. I am so lucky to have those two in my life and so is Summer.

It has been a rather uneventful day which is nice. After Mom & Tre left, Summer and I watched Barney's "Night Before Christmas" video that I brought from home. We had a slight dispute over whether or not Baby Bop and BJ are dinosaurs so we called her cousin Leah to see what she thought. I think Summer was really just being silly by not believing it, but whatever floats her boat is fine with me. She really is a silly little girl at times. I guess she gets it from me (or my mom). Clint is definitely more serious than us. She is currently sitting on the bed coloring with a blanket over her head, talking to the crayons. LOL

Her belly has been hurting her today which is not unusual. She hasn't eaten too much today- french fries, nutty bars and chicken noodle soup. Oh, and two bites of cheese stick. It's better than nothing though so I'm not complaining. Wish I could lose my appetite for a few days....then again if it takes cancer for that to happen, I'd rather not.

Six for Six

We are back in the hospital with a fever. No surprise there, but of course a little disappointment still accompanies this visit. I was hoping that Summer would not get a fever EVERY single cycle, but the odds are not in our favor for that to happen.

I forgot to mention yesterday that Summer weighed 31.4 lbs. That is a pretty good number for her. Hopefully that is one thing she will hold onto this cycle. She has been eating pretty good still, although just a few bites at a time. Today she ate 1/2 a banana, a few bites of a rice krispy treat, two finger swipes of chocolate icing, a few m&ms, 2/3 of a hot dog, 2 1/2 cheese sticks, 1/2 a peach, chicken noodle soup broth, a few sips of hot chocolate, 2/3 a carton of OJ, and peanut butter. Not really a whole lot, but a wide variety of things. I am glad she still has an appetite even though she hasn't taken her Zophran in a few days. The last time we got it filled (at a different pharmacy) she did not like the taste it had (maybe fruity) so it is not easy to get her to take. She always tells me "it will make me throw up every single one." I've learned that doesn't really mean she will throw up, but that she does not want to take it because she doesn't like the way it tastes. Granted, it might make her throw up on occasion, if she so wills it to. The mind is a very powerful thing over the way you feel. If you believe something will happen enough, it just might. Her other oral meds also often get the same response from her. Did I mention it is accompanied by an adorable whine??? LOL

She is already in bed and is ready for me to join her. Problem is, I'm not sleepy. We had a nap this afternoon together after we got our room (around 2:00). It is a small room, but at this point any room is not so great if it means we are here. The big rooms are definitely a plus, especially when she is on chemo, but either way we are not at home. That wonderful place where I don't have to put on my shoes every time I leave the room to fetch something for her (or myself).

We didn't really bring any toys which she has already asked for. We were in the "cool car" so there wasn't much room for more than our suitcase, the backpack, computer bag and stroller in the trunk. We are also missing our food basket which she seems to be missing more than me. Funny thing is she rarely eats anything out of it. I guess it is just the comfort of it being here and possibly holding something that sounds good to her. Why do we always want the things we can't / don't have the most? Oh well, I am just thankful for all that I do have. Despite everything we have gone through, I still feel that I have an extremely blessed life.

A long clinic day

Summer and I got home from the clinic a little while ago. Her appointment was at 9:00 a.m. and we didn't leave until around 3:00 p.m. Long day in the "sick" waiting room. She wasn't really sick, but I was trying to keep her away from all the other kids/families so we don't catch a fever. And boy are we close! 99.4 when we left the clinic. Her white count was .4 which means her ANC is really, really low. Her hemoglobin was good, above 9, and her platelets were very low at only 9,000. So, we had to stay for platelets which didn't show up until around 1:30 or 2:00 p.m. We knew at 10:20 a.m. that she was getting them. It really sucks that it takes 3 + hours to get the platelets from wherever they are to the clinic. Lots of time to catch germs which could be walking by. The good thing is it only takes about half an hour to get them in her. Then another twenty chasing the nurse down....CLINIC DAYS ARE NO FUN. Not for this mommy. We did make a necklace that says I LUV TDDY. They were out of E's. :) I thought we were going to do a second one, but we didn't. Mostly we watched PBS, namely Caillou & Barney. I really like that channel because it is somewhat educational while also entertaining for her. I don't ever worry she is going to pick up something bad off that channel. Ex. Family Guy, Simpsons.... While as an adult I might enjoy the occasional episode, I do not like for Summer to watch them. I would rather delay her exposure to some things as long as possible. Kids grow up too fast already these days. And, her even faster due to this cancer.

My baby is gone, well in the physical sense I guess. Some days, like today, she is still pretty much a baby. She's been on my hip or lap all day. I'm there helping her on and off the toilet, wiping her clean. She's asked for food countless times only to eat a bite or two...I seem to be her food slave. Thank God she is feeding herself right now. I just made her peanut butter cookies for the second time in two days. Oh yeah, and she is SUPER whiny. When she is not feeling good, whining is second nature. She really does seem emotional though and her eyes seem to tear up just hearing the tone of her voice. It is frustrating, but I know she feels like crap so I can't really blame her. I just try to figure out what she wants before she does and avoid some of the sudden emotional breakdowns. I also give her lots of hugs and kisses to let her know I care. I think we have a nap date in a few minutes too. She is watching what she calls "Baby Bop's School," but is actually called "Barney's ABC's and 123's." Whatever. We both know what she is talking about. I'm going to spend the rest of my precious alone time sitting here at the computer. Wait, she wants more food. Nevermind. Mashed potatoes & corn, here I come.

Please pray that a fever does not visit this house this week. We don't want any!

Just a little morphine

Last night, Summer woke up in a terrible fuss. She was crying and wouldn't stop. She said her belly hurt (all over). She said her feet hurt (???). It was hard to get her to calm down. The nurse wasn't sure if she was having an allergic reaction to the Vancomycin because her face was red and splotchy, but she was crying. So, she went to get her Benadryl and called the resident. They decided a little morphine might make her feel better (since that is the only pain medication they give through IV and she won't take anything but Tylenol orally). She was calm by the time they gave it, but it must have helped because she didn't wake up again for hours and was in much better shape when she did.

Her fevers are dwindling which is great. We are not sure if the belly pain is due to hunger or what. I know she is hungry because she tells me she is, but she just can't stomach more than chicken noodle soup broth, a few sips of sprite and cupcake icing. One of dad's sisters, Granny and a cousin and her boyfriend brought over some cupcakes yesterday morning along with a few jelly biscuits. The only thing Summer touched was the icing, but that IS something! It was nice of them to come visit and made the morning pass more quickly. My sister came in the afternoon and was going to spend the night with Summer, but Summer awoke from a nap, vomited and started crying for me. My sister called me and I came back to the hospital where I was needed. They said she looked so much better after I got there. It is amazing what a mommy's touch will do. My sister still stayed the night with us and is in the bed with Summer now. I left the room to blog so they could get a little more rest without having to hear me typing.

My mom's sister came on Friday night to give me a break. I was surprised Summer agreed to stay with her since we don't see her very often, but she did. They had a good time and when I returned Summer's long nails were a pretty pink, just like my aunts. :) My aunt brought her a little bear wearing scrubs and a mask (like Summer has to wear sometimes). Yesterday, Summer asked me where the bear's port was so I had to draw one on him with a pen. LOL

I am not sure when we will be going home. Maybe tomorrow or Tuesday, but I wish it was today. We were supposed to go to Lake Winnie with Lana's Love today, but it looks like we are going to miss it. I think that they are waiting on her to start eating again before she can go home. I SOOOOOOOOOOO hope that is today, but I know it is all in God's time, not mine.

It's not C diff

Yay, yay, yay, yay, yay!!!!! But, we still don't know what is wrong with her. I am just so thankful it wasn't c diff (feel free to google if your curious). She is still fevering and nauseous. Her belly is hurting her "all over" she says. Usually when she complains of belly pain it is just in the middle above the belly button. Nothing has shown up on the blood cultures either. Of course, these ARE side effect of chemotherapy so it is probably nothing major, as usual. For the last 4 months her body has been infused with harsh and dangerous drugs so all of this stuff she is experiencing is just part of being treated for cancer. Oh what an ugly word that is!

I hope she is feeling better when I see her today. My mom spent the night last night so I had a break, but I couldn't stop thinking about Summer so it wasn't too much of one. It is hard to separate yourself from the disease, even for a little while, and just go on living a fun, happy life....trying to pretend everything is okay. Even if you want to, there are going to be days when you just can't have fun and be all smiles. Please pray for us to have the strength to put a smile on our face in the days ahead. Seeing sick little girls and boys just breaks my heart. What did they ever do to deserve this???

High fevers

Summer has been running a high fever since yesterday. I think the highest it got up to was 102.9 under her arm. So, that's almost 104 if taken orally. Too bad the mouth sores (or maybe just a tired of being poked and prodded little girl) aren't allowing us to take it in her mouth. This is the highest I remember her fever ever being. So that makes me think it may be something more than just being neutropenic this time.

She finally ate something at 10:00 last night shortly after she vomited (for the first time that day). She hadn't eaten since lunch the day before so I was glad to hear her ask for something even though I was ready for bed. She drank most of the broth of the chicken noodle soup she requested and had a few sips of Sprite in between. Before that she had only drank a little water and about an ounce of apple juice all day. Good thing they have the fluids pumping into her.

Yesterday was an extremely long day for me. We were in the clinic from 8:30 a.m. until almost 3:00 p.m. waiting on a room. We initially came in for blood, but she didn't even start getting it until 4:00 yesterday afternoon. I was a little frustrated by this seeing as we were just sitting around all day waiting. She did get a dose of antibiotic (for the fever) around noon, but that was it. She needed her Neupogen shot too which I told them, but it never arrived. When we got to our room, I told the nurse and she got it for us. (btw-Ms. Linda is an awesome nurse!!!) The funny thing is the clinic was SOOOOO slow yesterday. I bet they didn't see 10 patients all day and they had 3 nurses. So, not sure what was going on, but I hope next time they are a little better at getting things done and not just waiting until we get a room to do what we came in for. Especially when we show up first thing in the morning. I mean we could've just stayed home and waited until a room was ready rather than twiddling our thumbs all day (well, not actually). :(

She got sick again around 2:30 this morning. It amazes me how good she is about puking in the appropriate place, especially since she is only 3. I guess she can feel it coming on and lets me know so I can grab the puke bag. She is usually holding Teddy when the urge hits and somehow he has managed to stay clear of all puke. Of course the first thing I do when I realize what is about to happen is remove Teddy. Lord knows we don't want him puked on cause he is a real comfort to her. That and her left thumb. Not sure what she would do without either of them.

Today is the funeral for Jayden. My mom is planning on spending the night at the hospital with Summer tonight so that will allow me to go pay my respect to his family. I know it will be hard, but I feel it is the right thing to do. If it was my kid, I'm sure I would want others to be there. So, I am not going to take the easy road and skip it. I just hope I don't get a turn at burying my child. Life would be so dark and gray then without my sunshine. Please keep Jayden's family, as well as all the kids with pediatric cancer, in your prayers. God doesn't need to hear specific names to answer prayers. He knows who they are.

It's that time again!

Looks like we are going to be admitted to hospital today. When we got here, her fever was 101.2, orally. When I took it this morning at home it was 99.4, auxiliary. I had a feeling we were going to be staying after the blood, so I brought the suitcase along with us. Good thing for a mother's intuition.

She has vomited 5 times since yesterday evening. She is hungry, but can't eat. She woke up at 6:10 this morning saying she was hungry. Daddy said to try to give her peanut butter, but the thought of that must have turned her stomach because she got sick instead of eating. Mostly she has made it to the bathroom, but once the hardwood floors took one for the team. Lucky for me, Daddy cleaned it up.

Poor baby girl has mouth sores too. Hopefully, they will get whatever this is knocked out in the next day or two. Of course, it could also just be the fact that she is neutropenic making her sick. Never know.

We are in for the next few days though. Now we just need to make the best of them.

Sick and tired

That's how Summer and I both feel, but in different ways. Today and yesterday, she has mostly been just laying around with a few spurts of playing mixed in. It is so hard to see her like this. She looks sad, sickly. And, yet I love her all the more. Such a sweet little girl having to go through such a crappy thing like cancer. So many kids are, but she is mine. And, she is with me everyday and it is hard.

I love to see a smile on her face. Today, two puppies came by just after she had laid down for a nap. I told the lady to bring them in and woke her up. One of the dogs was actually small enough to get in bed with her and it did. It licked her and she petted it. And, SHE SMILED. I was so glad I woke her up to see them because she needs smiles these days.

Then a little later her cousins showed up. More smiles. Such priceless moments.

Then she got tired and wanted to just be cuddled. More precious moments.

I am so lucky to have my little girl even though we are both sick and tired of all this mess! We will get through this and have lots of happy days again. For now we are just leaning on each other, family, friends, and mostly Him.



P.S. May have a fever now. The first since last night. So, no sign of going home tomorrow.

Results and a Fever

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

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

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

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

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

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


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

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

In our room....

at the hospital. Yep, yesterday she started running her usual fever since her counts are bottomed out (101.5 at its highest). So last night around 9:30 we arrived at our home away from home. They started her on an antibiotic a few hours later and then gave her blood since her hemoglobin was below 7.

She is doing pretty good today. My cousin is in from Iowa, and she came by to visit. Summer mentioned that she wanted some Fudge Rounds and Krystals so my cousin went out to fetch them for her. It was nice to see her and her hubby. We do love visitors when we are here!!!

Hopefully, we will be out Sunday or Monday. Then we are going to try to head to the beach before her next chemo cycle. WOO-HOO!!!!! Summer has actually been asking to go to the beach so I am sure there is sand castle building in our future. We'll just have to make sure to do it early in the morning because she is not one to stay out in the hot weather. She's not a sun lover like her mommy......yet. :)

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