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.

Feelin' Fine

Summer is at the hospital playing with Memaw right now. My mom has been SOOOO AWESOME over this past year. Well, really the past 31, but who's counting? She makes sure I get a good break everyday at the hospital. My aunt Leisa, her sister, and my dad have also been coming to help out. Summer loves them all and I never worry about leaving her with them because I know she will be spoiled to the max while I am away.

Her ANC was 280 today; white count was 1.0. Her platelets were 24,000 so she got a bag of those today. That is her third platelet transfusion this week (one blood). She may be going home tomorrow if the ANC goes up to 500 and she is able to take the oral antibiotics. They are going to try a capsule instead of liquid antibiotics. I can just empty it into some yogurt and hopefully she will eat it like a good girl. No pouting or whining I hope, but that is wishful thinking for sure. She will have to take it 3 times a day to finish out the 10 day treatment for the staph infection.

Her mouth sores seem to be all gone and she is eating pretty good. Yesterday, she ate 1/2 of a soft taco supreme minus the lettuce. She also has eaten lots of sliced turkey over the past few days. My aunt Sandra brought her some cupcakes today and she ate on one until it broke. Then she was done with it. She's had a PB&J everyday for the past three days (at least half of one anyway). I am so happy to see her eating good and feeling good. She looks good too. She has a little over a week left to "feel good" before the next cycle starts. We will still be staying close to home and away from people. Gotta keep her as healthy as we can. We may have some special outdoor activities though. I see a trip to the lake in our future. I just hope God sees it too.

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!

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.

Back in the slammer.... ;)

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

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

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

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

Still no poop!

Summer had a fever of 101.6 an hour or so ago, so I am not sure if that means we are in for another 48, but it might. :( She still has not pooped. Getting her to take her stool softener is still rough. I really wish she would just take it, but it seems like most of the time we end up in a stand off. Her refusing and me telling her she will take it. It can get pretty ugly and that upsets me. I wonder if this will ever get easier for her. I have tried explaining to her we have to do what the doctor says, but sometimes she still doesn't want to. She doesn't think the medicine is working because she still hasn't pooped. If she does not see immediate results when I tell her what a medicine is for, she assumes it isn't going to work so why take it. She is really smart, but of course not smarter than the docs prescribing the meds. I just wish they could figure out a way to get the poop out. They don't want to mess with her butt at all because oncology kids don't heal very well since their immune system is shot. So, the risk of going that route is too great. Tomorrow I am hoping to get with a Dr. to see if there is anything else we can try. They did another x-ray of her belly today, but we won't get the results until tomorrow because their is no pediatric radiologist on the weekends. In the meantime, the belly pain continues.

She is wanting to eat, but I think her mouth sores are hurting her....along with her belly. She will take a bite of something and then say, "My belly hurts." I also noticed her wince a little like she was in pain when she tried to chew up a frosted mini-wheat. :( Despite the new reward/sticker chart I made the other day, we are still not getting 4 swishes a day in. We are doing better though.

She is still on the shots because her numbers are still low. Today she had to have platelets because they were only 13,000. They wait until they are below 19,000 to them to her. I found out a normal person has 130,000-400,000. Thankfully, it is a painless process. Her hemoglobin was above 10, so no blood was needed. They usually wait until it drops below 8 to give her a transfusion.

We had a nice picnic lunch outside today despite the heat. Summer didn't eat much, but she did ask for a hot dog and cheese sticks. She tried both, but only ate a few bites.

This trip to the hospital has been no fun. She has rarely felt like playing and I have been down in the dumps myself. Where did the fun mommy go????

The last thing I wanted to mention is that her beautiful, long eyelashes are about half gone. She has been rubbing her eyes a lot again today. I'm not sure if the eyelashes are getting in them or what, but wet washrags are her friend.

Please continue to keep us both in your prayers. Pray that God will give us the strength to continue on fighting the good fight. There are lots of frustrating moments where I'm sure Summer and I both just want to throw our hands up in the air and give up, but that is not an option. We will beat this thing. We have to.


P.S. I finally did win at Spider Solitaire. Longest winning streak: 1 Longest losing streak: 32 :D

Sleeping peacefully

Summer's fever was 101.4 about an hour ago. So, more Tylenol for her. It has been up pretty much all day. The few times it was under 100, I think maybe it was not in the right spot under her arm. Usually she lets us take it in her mouth, but the past day she has preferred her underarm. Not sure if that is because she doesn't want to give up the thumb or because maybe the sores in her mouth are hurting her. The sores are from the Vincristine, I believe. I have been trying to get her to swish a few times a day with the mouthwash they gave us, but I still haven't gotten the recommended 4 in.

I believe the only thing she ate today was what I mentioned earlier - a few bites of candy bar. Not sure if that is due to nausea or mouth sores or what, but she is not acting hungry. The only thing she has had to drink is a few sips of water. Thankfully, the IV is keeping her hydrated.

They also did another blood culture since she is still running a fever 24 hours after the first culture. So far the first one is negative. Yay! But, she is still not feeling good with the fever hanging around so I am curious as to what is causing all this. Of course, we may never know for sure.

I hope she sleeps tonight. She has slept almost all day, except for probably 4 or 5 hours. They said that her fever will eat through her platelets so I imagine she will need more tomorrow. Who knows what the new day will bring? I'm hoping for a playful little girl, but I will take whatever I get. I am just so thankful that God has allowed me to mother this wonderful child. She is truly a blessing from above!