Looking through the clouds

Sorry for the slacking on my part in updating the blog this week. We came home Wednesday after lunch at the hospital. Thank goodness we got to eat lunch there! LOL I must say I will not miss eating chicken fingers for lunch and dinner every day. My bacon and egg sandwich served to me every morning I just might miss though. :)

Summer's white blood counts were still nothing on Wednesday so we are still on the shots which she is putting up a big fuss about every day. I can only imagine what it feels like. No, I can't. Poor baby. We are almost through with the sickness that comes along with being treated with chemotherapy. I can't wait to have my bouncy, bubbly girl back. Or, whatever she will be. I just want to see her well and happy, loving life.

She spent the night with her Memaw last night, but she didn't really want to. She cried and told me she was scared. I know that just meant she didn't feel too good and wanted me to be close to her. But, her daddy and I had a date so I had to nudge carry her out the door with promises of picking her up after the movie should she be awake and needing me. Usually, the thought of going to Memaw's house brings on a big smile and a woo-hoo. Oh to have her well again.....

We just have to be patient right now. Everything happens in God's time. Not mine or hers. Ultimately, what He has planned is what will be. I have put it all in His hands because they are much bigger and more capable than mine. Listening to the radioathon the past day and a half has really been touching. Hearing stories just like mine, relating to the fears, the unknown. There has to be a reason God put us on this path.

I can't wait to go get my little ray of sunshine so she can brighten this day for me. It's kind of gloomy around here without her.

Another day in room 328

We are sitting in the hospital bed watching cartoons and surfing the web. Oh, what I wouldn't do to be home right now! Summer is going to be getting more platelets today. Her white blood count is .2 so it doesn't look like we will be ending the shots anytime soon. I thought that since they doubled the dose of Neupogen it would make them go up quicker, but her bone marrow is just worn out right now. I hope Dr. Keates will let us go home tomorrow, but I think Summer will have to be jumping up and down on the bed for that to happen from what she said today. I really hope she is not planning on keeping us until her white counts recover because that probably won't be until next week sometime. I just might be insane by then! LOL

Summer is eating good and hasn't been complaining about the mouth sores too much so they must be getting better. She had chili for breakfast which was followed by 1/2 a sugar cookie left over from yesterday. We are waiting on them to bring her more sugar cookies and she is not waiting patiently. She says she can't wait. Luckily, Barney is coming on so that should help to keep her distracted for another 30 minutes.

Not much else to say. Please pray that we get out of the hospital soon. She does seem to be feeling better than she was yesterday and I am thankful for that. It is no fun seeing your little one suffer.

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.

One more night

I just found out that we got a good nurse for our last night in the hospital. :) Then I saw the "bad" nurse walk by. It made me shudder thinking we could've got her. LOL

Summer got blood today since her hemoglobin was just above 7. Her platelets were down to 40,000 so there is a possibility she will be getting some tomorrow before we go home. Probably so if they are around 20,000. If so, I hope they get an early start on that. We have been invited to a private party at the zoo tomorrow night, and I want Summer and myself to get a good nap before that.

They never came up with any reason for Summer's fever so I guess I'll just chalk it up to being part of the process. Hopefully, the end of the process. She is still on shots which she has been fighting me a little on. We are almost through though. Maybe another week or so of them.

There have been 3 more pediatric cancer diagnosis' this week at the hospital. It is so crazy and sad to see "new people" in the oncology section of the floor. My heart feels for them and I want to comfort them. Cancer is such a bummer. Why, oh why, does it have to exist in this world? God please take it away! Just as we are finishing our journey, so many others are just starting theirs. Heartbreaking.

I guess I'm going to snuggle up to Summer and finish watching Barney with her. I am hoping she will want to watch "The Tigger Movie" after it ends, but I think she might be ready for bed. She told me she was before we started the Barney movie.

Thank you all for your prayers and positive thoughts. I don't know how we woul'dve gotten through the past 8 months without them. Oh yeah, scans are on November 16, 18 & 20th. NED here we come!

8 for 8

Summer is back in the hospital with a fever. Last night we watched TV together. As time passed, I noticed she was feeling progressively warmer. When she felt too warm, I got the cow thermometer and took her temperature. 102.5. Called the doctor. I thought for a second about giving her some Tylenol and waiting for the fever to return. Then I remembered that it was not worth the chance of it being something more serious and made the dreaded call. I was told to report to Children's 300. No surprise there.

After I got there, I had to go back down to the ER to give them my insurance information so we could get Summer into the computer system and treated. I waited and paced and waited and paced. Three phone calls from Summer later and I was headed back up to the room. I had left her one of my cell phones so she could call me if she needed me. Apparently, that was a good idea. :) The nurses went ahead and accessed her port even though I had not signed in. Of course, I didn't tell them because I wanted to get the party started. Just as they were starting a lady comes to ask me to go down again. Needless to say, they had to wait. Summer's port accessing was horrible. Wait, HORRIBLE!!! Not only did she repeat, "Don't do it Jamie. No, no! Don't do it!" But, the port did NOT work. The nurse was able to get a little blood, but then it stopped up. She couldn't push any fluids through it or pull any from it. Summer was in pain already because despite the numbing cream, I'm sure it still hurts. Then they are trying to wiggle it around, hoping to get it to do something. Nope. Summer was whimpering in pain and taking some deep breaths. Another nurse was called in and still nothing. They took it out. Then went and got another needle kit to try again. Nothing. They ordered some stuff to put in it and about an hour and half to two hours later they finally got it working. What an ordeal!

Summer was sleepy and feverish so she had been sleeping off and on throughout the process. After she was all set up and on the antibiotics, I finally crashed next to her. Oh yeah, before we left to go to the hospital she told me that when she was napping on the couch she had dreamed that she was going to get to sleep with me. :p Sometime after 11:00 p.m. she woke up and told me she was too hot. I went ahead and called for Tylenol since it was time and I had only given her a half a dose the first time because I was in too much of a hurry to get to the hospital. :( Anyway, I took her temperature which was 104.9 under the arm. OH MY! I went to the nurses station and told the first nurse I saw what it was. A few minutes later our nurse (who is one we have never had before), brought the Tylenol. I was already retaking her temperature, but this time it said it was 103.2. Needless to say, her fever broke a few hours later and I don't think she has run one since. They gave her a flu test which was negative. Also, her blood cultures are still negative as far as I know. Her hemoglobin did not bounce up too much after the transfusion yesterday and was only 7.3 today. So, she may get blood tomorrow if it does not recover. I think we will probably get out on Thursday, but that is only if no new symptoms develop. They say it could be a virus. They are watching to see if she develops a rash now. She is in good spirits and up and about so all is good for the time being.

This could possibly be her last stay in the hospital for a long while. God willing, forever. They are scheduling her a bone scan, MRI and CT scan for sometime in the next few weeks. I wish I could say I wasn't worried, but I am. I am scared to death. The relief I thought I would feel with the chemo being over hasn't come yet. Clint is due for scans too. I wonder if this has anything to do with my urge to devour anything and everything sweet I can. Hmmmm???

I've Got a Cling-On!

I could tell Summer's counts were low before we even made it to the clinic today. She has been super clingy to me since Friday. She ended up going to poker night with me on Saturday because the thought of being away from me brought her to tears. It turned out okay though because there was a little dog there for her to play with. Yesterday, we went to see the new puppy that Memaw and Nanny got her. When she saw the pictures on the phone that Memaw sent, she wanted to name it Bark. But, (luckily) when she saw the dog, she said her name was Scratch. She wanted to spend the night with Memaw, so I left her there. Later in the evening, I got a call from her. She was missing me so bad that she had Memaw and Nanny bring her home. That was a first for her (and hopefully a last). We had a good snugly evening together. She fell asleep in my bed and was transferred to her bed when Daddy came to bed. A few hours later, she was back. After a while, I took her back to her bed, but an hour or so later, she was back again. When she is feeling bad, I guess there is no place else like being with me. I'm enjoying all the snugly love though (although the whiny voice not so much). She is emotionally fragile when she does not feel good and the littlest things can bring her to tears. I can't wait until she is feeling better, but I'll enjoy the snuggling in the mean time.


She needed blood and platelets today. Her hemoglobin was 6.9 and her platelets were about 13,000. Her white counts are in the dumps too at .2. So, we will be staying at home this week trying to dodge the fever that will land us back in the hospital. Not sure if she will be up to trick or treating by the end of the week, but if she is not, we may just go to a trunk or treat at church. Or, we may even stay home. We'll just have to wait and see.

BTW - if you have not done so and would like to vote for Clint and Summer (or another picture) in The Look of Love themed photo contest, hop on over to this blog. They are picture #8, just in case you can't tell. :) To vote, you need to leave a comment on that post voting for them. Today is the last day.

Not usually a beggar, BUT

I would love some more votes for the picture of Clint and Summer I submitted for a "The Look of Love" themed picture contest. So, if you feel inclined please click on the link and leave a comment voting for them (or if you must, some other picture :[ LOL). They are picture #8. :) Happy voting.

In other news, I have four kids up and one still sleeping. Yep, I'm in a house with 5 kids willingly! I must say it is actually something of a treat because the bigger ones help keep Summer entertained so I can do other things. Of course, they think they can take care of the 1 year old too which I have decided is not such a good idea. Every time I turn around they've got her on the couch. Leave the baby on the floor!!!! The baby I am referring to is my grandbaby, Lexie. She is such a good baby, but you still have to watch her or she'll have a mouth full of marbles. She is also the only one that is still sleeping. The other kids are my sister's kids and Katie (a friend's daughter). They have been playing pretty awesomely together and the sleepover went about as smoothly as I could of hoped. I even got a little "me time" in the hot tub last night. :) I am ready to hand over two of the kids to my dad. I've had them since Thursday. I'm sure I will take Lexie home at some point today although I really hate to see her go. There's just something about having a baby in the house.

I am hoping Summer will want to sleepover at Paw-Paw's too, but I'll have to play my cards right. She has been wearing down the past few days and seems to be feeling puny at times. She is still eating even though she is not taking the Zophran like clockwork. I forgot to bring her swish medicine with us to the lake, so I really hope she doesn't have any mouth sores pop up over the weekend. I better get off here and tend to Summer. She's on the couch sucking her thumb.