Feeling good in the hood

Well, not actually the hood....

Summer's white counts were up to 2.3 today. Her ANC was 1,400. She has to be at 2,000 to get off the shots, so they gave her two more to get her up that high. Dr. Gratias was afraid if we stopped the shots too early, her white count might plummet down to .5 again so he wanted her to get a few more to be on the safe side. Her platelets were low, but apparently not too low at 28,000. She did bleed a bit when I gave her the shot tonight so I am hoping they do not get any lower. She has to go back later this week for another count check.

She is definitely feeling A LOT better. We went to the playground this evening which was the first time in a while. She ran and played and slid with me at her side. It was fun and SOOOOO nice to see her having so much fun and feeling good. I've almost got my little bundle of energy back! Thank the Lord!!!!

Then we went to Greenlife and picked up some organic food for dinner. Not sure it will help to eat that way only once in a while, but it was a nice treat and turned out really yummy. I really do believe that cancer is lurking all around us in our food and water. There is just too many people with it these days for it to be something that is not a product of our environment and the things we eat. Scary, but I'm going to try to not worry about it. It won't do any good.

I am being beckoned by Summer for more food. She is always hungry it seems. I wonder what she will want now. She's had baked beans, 3 string cheeses, a Nestle Crunch, a brownie, French fries, 1/2 hamburger, garlic bread, tortellini, tomatoes, and cantaloupe so far today. Baked beans it is again. That SOOO does NOT sound good to me. Chocolate, on the other hand, DOES! Maybe she'll grow out of it....LOL.

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.

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.

Platelets still lagging

Summer didn't make counts today. I don't know what they are, but I'm pretty sure her platelets are low. When they pricked her finger, it bled very easy. I forgot to mention that last week, Summer's last 3 shots were a breeze. She let me give them to her all by myself. She sat in my lap and didn't whine or anything. What a way to end a cycle!!! Not sure if she will make counts or not on Thursday, but I hope so because otherwise she will be in the hospital on my birthday next week (assuming her platelets have recovered). Well, I just got the numbers: ANC 1400, white count 2.8, platelets 66,000 and hemoglobin 9.1. She almost made it. Platelets just need to be 75,000 so we should be admitted on Thursday. We got out of here quick today. This post is the only thing holding us up. :)

Looks like we've got a few more days to enjoy. I say shopping we should go! Time to finish up her Halloween costume. Oh, and a yummy lunch out too!!!

Counts too low for chemo, party time!

Well, maybe not party time, but fun time this week! Summer is feeling good and eating good. She weighed 33 pounds today which is awesome. Her white counts are coming up (2.2) and she only has 3 more shots this cycle. They are still too low for public indoor activities right now (ANC 400), but will be good by the end of the week. Her platelets are still low at 20,000, but they did not give her any today. We are just waiting on them to come up now. They are not even going to try to start chemo this week. She goes back Monday for another try. I am so excited to have the rest of the week off from going to the clinic. We never get to go just once a week.

We have lots to do this week, just as we did over the weekend. Camp Agape was awesome! Summer really enjoyed it, as did Clint and myself. The Candlelighters did an awesome job with it along with the help of several churches. We did not end up spending the night, but next year we will definitely take the pop-up and stay over. They had the best petting zoo I've ever seen with a raccoon, ground hogs, chinchillas, a monkey, a parrot, bunnies, geese, chickens, miniature horse, donkey, & mule, cows, goats, a dog, a cat, pigs. Loved it! Summer's favorite part was the gingerbread house where she scored a big bag full of candy. We also left with about 5 more stuffed animals than we started with. The weather was perfect. A lot of Summer's cancer patient friends were there along with SpongeBob and Elmo. I was very impressed and honored to be there even though you gotta have a kid with cancer to go.

Summer spent Saturday night with her Memaw. She came home yesterday to find her niece Lexie here. We had a good day together playing. The neighbor even brought her baby over for a little bit. I sure do enjoy kids although I don't think I'd want a house full all the time. Can't say I don't ever want another little one myself, but the clock is ticking and I don't wanna be 40 and having a baby. I want to know my grandkids too! We'll see what life holds....one thing is for sure, you can never count on it to turn out exactly as you plan. Someone else might just have other plans.

Another Monday at the clinic

Oh what a weekend! Summer got to camp out with her cousins and had a great time. She got to spend two nights with her Memaw just like she wanted. She has still been eating pretty good despite the mouth sores that showed up over the weekend. Yesterday, she woke up from her nap crying they were hurting so bad. She said she couldn't even swish, but after suffering for a while longer decided she would. She has two different kinds of swishing products and ended up using them both. She has only used one once because she doesn't like it. It is pink and doesn't taste good, but it numbs her mouth I think. After she tried it, she was ready to eat. I hope they go away quickly. I think they usually do so maybe by the end of the week they will all be gone. She hasn't taken her nausea medicine today and has still been eating pretty good. PTL! I have noticed that she has been a little more tired than usual the past few days, but she has not "crashed" like before. I am so thankful she is handling the chemo so well. She got her last shot of Vincristine this morning and only has one more round of chemo to go. I am excited to be at this point, but a little scared too. I know I need to let the fear go and not focus on "what if it comes back?" But, that is easier said than done. This is MY little girl we are talking about and losing her would be devastating. It is all in God's hands though and I just have to have faith that He will bring her through this so she can live a long, healthy life.

We are in the clinic now waiting on blood results (and a hamburger with fries and oatmeal raisin cookies for Summer). She has been on shots for about 10 days. They upped her dose of Neupogen to double what it was before last Thursday. I hope this means her white counts will recover quicker than they have been. I'll be glad to be done with the shots for this cycle because she still cries when she gets them and says "it will bleed." I am not really anxious to get the last chemo underway, but the earliest we could start would be next Tuesday. I highly doubt it will start then, but I have been wrong before. Once or twice. LOL

I guess I'm going to go watch Summer blog some bubbles. She finally learned how to do it today. She has had trouble adn I finally figured out it was because she was holding her lips wrong. Now that she knows to pucker and make a circle with her lips, she is a pro. She got a butterfly tent from Miss Ashley today. I can't wait to go home and set it up. I just hope she will play with her dolls in it, but I am figuring I am going to have to contort my body into some uncomfortable position for at least a little while. Should be fun no matter how it turns out!

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

Counts are back. White count is .4 and ANC is 0. Looks like we are stuck inside a few more days since her immunity is nil. She needed blood and platelets. So, she is getting the blood now which started after 3:00 p.m. We will be here until probably 6ish this evening. :( That is a long day at the clinic considering that we were here at 8:55 this morning. Looks like we will miss dinner at Chilis with Memaw & Nanny. Today is the day they donate all proceeds to St. Jude. Maybe we will just get takeout because Summer was wanting a steak last night and it sounds pretty good to me too. Clint brought me some lunch and my laptop so I have not been completely bored sitting here waiting. Summer is napping while she gets blood. Hopefully, she will not start running a fever or anything crazy to warrant another hospital stay this week. A week off would be nice for us both. Of course we have to come back to clinic on Friday for a count check to see if she can come off the shots. I just hope it doesn't turn out to be a long day like today.

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.

Counts low, but spirits up!

Summer had an appt. this morning at the clinic for a possible admission for cycle #7. Her platelets are still too low, 38,000, so we have the rest of the week off. WOOOOOO-HOOOOOO!!!!!!! Another week of feeling good is always welcomed around here. She is up to 33.3 pounds. Hemoglobin was 11 and white blood count was 1.9, both are good numbers. Her ANC is 500 which I thought was low, but the doctor said she can go fun places. We'll have to see about that. Maybe fun outdoor places or places where we know everyone is healthy. I'm not so sure I'm going to spring for Chuck E. Cheese though. It has already crossed my mind that we could go as soon as they open and I could take a can of Lysol with us. I know. Shame on me, but I have already admitted I'm not the homebody type. I like to go, go, go and so does Summer. I see so much of myself in her it is crazy. She uses the same language as me, and no I don't mean English. We use words like crazy, insane, funky. Oh my, what am I teaching my daughter? Hopefully to have a carefree and fun spirit, at least that is my intention. I sure don't want to raise a sour puss!

We had a BIG hug on Sunday when we were reunited after a three day vacation from each other. It was awesome. I didn't think she was going to let go, and it felt so good I didn't want to let go either. I just love those moments. She surprised me with a bird house she had painted for me. It shaped like a church and is pink and purple. I'll have to take some pics when I get it to its place in this home. It's still in the bag and need a clear coat to seal the paint. I have a feeling it is going to end up outside on the balcony.

Yesterday, we had a cookout up at the lake with some friends. Summer played really good with the eleven year old girl, Katie, that was there. It was nice because I got to grill in peace. :) After lunch, the girls and I played in the hot tub which was like pool water since we had just filled it up with the water hose. I was chased through the yard with buckets full of cold water. Then Summer reminded us we weren't playing with her. LOL I think she enjoyed watching though. She didn't want the bucket dumped on her head that was for sure. However, Katie did dump it on her a few times. She took them pretty good and didn't have a major melt down so I didn't reprimand Katie. For dinner, the girls helped me make home made pizzas. Katie's pizza had very little sauce and a lot of cheese. Summer's had lots of sauce and just a little cheese. I think Summer's was preferred by everyone, but Katie. I guess she's going to be a "good cooker" too when she grows up. :p Last night, she had a major melt down at bed time. She didn't want to stay there, but would have preferred we returned to the condo. Not sure why it was such a big deal, but we didn't cave and stayed at the lake. It was nice being out there, no temptations to leave the house except to walk down to see the neighbors. We may go out there again later this week. I hope she is cool with that. LOL

I foresee a nap in her future today. She got up just after six this morning. Plus, she is saying the carrots and broccoli in her pasta don't taste good. I only put in a few and told her she had to eat them which she agreed to do after she finished the noodles. Maybe I should've just fed her myself then I could have snuck them in with bites of pasta. Instead, I am eating lunch at the computer trying to get this blog updated. I think it was worth it. Why is it though that when I tell her she has to eat them or take a nap she says, "My belly hurts. I need my Teddy. I'm tired." Vegetable bites now in with only a few tears shed. Noodles and chicken refilled. We'll see if she eats the one carrot I put in there under it all. (nope!)

Not sure what the week ahead holds, but hopefully some times with friends. Lets hope everyone stays healthy so that can happen. I also foresee lots of cartoons now that we have them 24/7. Yay for satellite TV! I am also going to see about getting "The Sound of Music" for us to watch. I think Summer might enjoy it...if she gives it a chance. I'll just have to tell her it is a "kid" movie.

Oh yeah, the scan showed her heart is 55%. Not sure what that means, but it means it is not too damaged. I did find out that number is equal to 30% on the echo cardiogram. Not much clearer, huh? I'm not very good (or interested) in asking the hard questions or getting specific details. The doctor didn't seem very concerned so I took that as a good sign. I know they are going to use the heart protectant and give the full dose of Doxyrubicin. If her counts recoup, cycle #7 will start next Tuesday. Don't hold your breath though. If I've learned anything over the past few months, it is that the future is never certain.

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.

Out come the blue gowns

The tests from Summer's puss came back and it is the resistant staph. Which doesn't mean too much more than it did otherwise. Only that when people come in the room now they are wearing blue gowns.....as of today. Never mind the past four days we have been here with no gowns. It is crazy to me how they can suspect something but not take any precautions until it is confirmed. Hilarious really!!! And the nurses keep telling me the hospital is probably the safest place for Summer to be.....yeah right. I do know it is best for her knowing she needs to be on IV antibiotics until her white counts are up to at least 500, but otherwise I think there are a lot more germs here than at home. Her white count was .6 today which is an ANC of about 60 they said. Yesterday, I thought they said her ANC was 120 so I guess it dropped. Your white cells are the ones that attack infections so I guess they are being used up to attack the two spots of cellulitis (along with the antibiotics). The Dr. still says we might be out before the weekend, but we will see. She is still on the Neupogen shots (17 so far this cycle). In a perfect world, cycle #7 would've started today but her numbers are just taking a long time to recover. Her platelets were 30,000 today, as opposed to 60,000 yesterday. That is low, but not too low so they aren't giving her any today. They are probably waiting to see what they will be tomorrow to see if they go up or down.
The doctors did find the heart protectant which is good and bad. It may protect her heart some, but it also can cause cancer itself and is not good for her. The doctors at our clinic all seem to agree that the Doxyrubicin should be given (at least some of the dosage), but we are still not convinced. Clint is worried Summer will always have heart problems and never be able to do things that require a lot of physical exertion. My mom also thinks it might be better to skip it rather than put Summer in any more danger. I'm not sure what I think, but I do want to keep my daughter and in the best possible shape I can. So, we will wait to see what the Muga scan shows next Friday. I doubt we will get the results that day though. Who knows? We might because I think they are wanting to start cycle #7 the day after Labor day which would be the next working day.

Summer seems to be feeling even better today. She actually told me this morning that she was ready to go home. That says a lot for her because she usually dreads the port deaccessing so much she wants to stay forever. She has watched her new movies over and over the past two days. She just can't get enough Caillou or Barney. She has been coloring too which is more than she has done all week. Mostly she has just been watching cartoons or sleeping and sucking her thumb into a state of grossness. She does give it "breaks" though. LOL They haven't been long enough to take away the soggy skin look though. It is pretty funky.


P.S. Not to freak anyone out, but stock up on Theraflu NOW because I heard there was going to be a shortage this fall due to swine flu. That is what the Dr. will tell you to take when you see the first symptoms of flu anyways. Of course, you may not have an immune compromised child, but if you do have a child please be careful in where you go with them because the germs are out there and they are much more at risk than us as adults. I'm also trying to get enough food in my house where I won't have to go out for the next few months....at least not much. I think I am banning myself from restaurants, at least with Summer. Maybe altogether, if I can handle it. I am also going to try to shower and sanitize after I go places so as not to carry germs back into my house. Wish me luck because I am not good at being a homebody!

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!

Short stay

Summer got out of the hospital yesterday afternoon after receiving platelets. They weren't too low, but would've probably dropped to nothing by Saturday or Sunday so they wanted to get them pumped up so we won't have to come back until Tuesday. Good thinking. :) We have had only one other two day hospital stay and that was after cycle one. I am SOOOOO happy that it was a short one because that place is a real drag. Plus, my 5th anniversary is today. Guess who is going to Memaw's tonight?

Well, Summer needs some Mommy time now. We might head to the playground this morning. She is also wanting to go to the carousel. Those are a few places on our "safe" list right now so we might as well enjoy them.

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.

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!

Hallucinating and such

Yesterday was by far the roughest chemo day we have had so far. Even with the pre-med of Benadryl, she had a reaction to the Iphos. She ended up biting her thumb and causing it to bleed which warranted a band aid and no more sucking. That was before 1:00 p.m. She briefly napped after the Benadryl, but kept waking up in a fuss. When I got back to the hospital, she was upset and I got her to calm down, but it took a few minutes. That didn't last long and she ended up getting some Ativan which should've knocked her out. It didn't. Not even close. She had been twitching and seizing since getting off the Iphos. so that is why they gave her the Ativan hoping she would be able to relax. No such luck. She didn't have control over her bodily movements. She was upset because she lost her thumb. The doctor ordered a CT scan of her brain and EEG to make sure her brain was okay. It was.

We played Pretty, Pretty Princess, but she couldn't even hold the pieces of jewelry or put them on. She could barely stay sitting up. It was not a pretty sight, but I was trying not to get too freaked out. Clint picked this time to come and visit us. He was pretty upset seeing Summer in such a helpless manner.

My mom came by to visit/help after work. We watched Summer pitch a fit to ride her tricycle for a while. She couldn't walk much less operate a tricycle. She didn't understand that though. She just wanted to ride. It took forever to get her calmed down and even longer to get them to give her more meds. I don't know why it was so difficult to get them to give her something else to calm her, but they finally did after 8:00 p.m. More Ativan. It didn't help this time either. After my mom left she started hallucinating. She saw a crab, smiley faces on the floor, a castle on a white blanket, a dog house above my head. She was really tripping out. Reaching for things in the sky, staring intensely at the palm of her hand, running her fingers on the screen of her DVD. It must have been in 3D in her mind. I was tired and ready for bed, but she wouldn't/couldn't fall asleep. I bet I told her fifty times to "lay down" which she did, briefly. Then she would sit back up and make me nervous, but I was sleepy so I just kept telling her to lay down. She wanted to play with her toys. She wanted to watch TV. She wanted to ride the tricycle. All I wanted her to do was sleep. I even took the band aid off of her thumb hoping she would fall asleep if she could suck it. Nope. She didn't go to sleep until after 2 a.m. which is very unusual for this cycle. She usually sleeps all day. I guess her brain was overstimulated or something.

It was a crazy day and I am soooo glad it is over. We only have one more of those cycles left. They may lower the last dose of that cycle by 20%, but it is up to Dr. Gratias. I just hope she doesn't have as bad a reaction as she did this time. She only slept about four hours last night and she is still awake. No naps today and she is still going pretty strong. I hope tonight is not a repeat of last night. If so, Daddy's got Summer duty. :)

Her ANC was over 2000 this morning. Her platelets were around 90,000 and her hemoglobin was above 10. I hope these numbers don't plummet too fast. We are not due back in the clinic until Monday, although the doctor said I could come Thursday if I want to. Seeing as we have been in the hospital since last Thursday I think Monday is soon enough for me.

Shots start tomorrow. We started the swishing with Perodex today to hopefully keep the mouth sores to a minimum. Please pray that we evade a fever this cycle. It would be a first, but anything is possible. In the mean time, we are going to try to steer clear of public places. We did go to a birthday party tonight, but I think that will be it until her numbers are back up. I just hope it is as easy to do that as it is to say it. Wish us luck!!!

Quick stat update

Summer had gained almost 2 pounds since Monday (31.7 lb). Her white counts were at 10.1 and her ANC was around 5000 which is definitely enough to stop shots and start back on chemo. We actually stopped the shots on Wednesday (last one). We are ALL always happy when it is that time again. Too bad she always has to start them back the day after we are done with her inpatient chemo. Her platelets were too low to start chemo, but not low enough to get any more at 53,000. Hemoglobin was acceptable at 8.5. Hopefully, those numbers will continue to get better over the weekend so we can get cycle 6 started.

We should be going in on Monday for admission with chemo starting on Tuesday which, btw, is the day my best friend will be giving birth to little Harper. I've already got my relief planned so I can be there to hold the new baby when Selena (and everyone else) is tired of her. LOL Wish me luck! I'm sure there will be no shortage of free arms.

Thank you for all of your prayers! Please pray for all the kids with cancer as there are so many who are suffering. Oh, and have a great weekend!!!

Gotta love talking dogs! ***UPDATED***

Martha is my favorite! :p That is the cartoon Summer is watching right now. What's so great about a talking dog you might say? Well, this dog teaches vocabulary words. Like today, add and subtract. It is pretty cool and overall bearable to sit through once or twice a week. For me, that is. Summer could watch it everyday. She has really been missing "The Big Comfy Couch" and I need to go online and see if I can find it. I don't really like surfing the web though. There are just TOO many things on it and it can suck you in for hours. With Summer, I just don't have hours to sit at a computer. We are talking minutes people. LOL

We are off to the clinic this morning for a finger prick and count check. Hopefully, she will not need blood or platelets and her white blood count will be above 1. It has been around 0 or 0.2 for over a week, the highest it got was .4.

She looks better than she did yesterday and is actually sitting up watching the cartoon instead of laying down in the fetal position. She often sleeps in that position now.

Ok, so I don't know what I've started, but last night I tried to sleep in my bed. Let me just say that I woke up in Summer's room. She begged and pleaded for me to sleep "all night" in her bed. I didn't want to start something and never be able to sleep in my bed again so I didn't fully agree. I told her I would stay in there some. So, every time she woke up alone, I was beckoned. "Mommy, I need you." or "M-O-M-M-Y!"....boo-hoo-hoo. When I finally gave up and decided to stay in there (which was after Daddy closed our door and woke her up, I'm sure), she seemed to sleep for longer periods and only stirred instead of fully waking and sitting up in bed like before. BTW - She did complain of belly pain several times during the night. :(

She still did not want to eat or drink this morning, so I gave her a Zophran. Then I fixed her some apple juice. Well, actually I just grabbed the cup from yesterday from the fridge. It was half-full. When I set it down, Summer started complaining there wasn't enough in it. I was thinking she just tricked herself into drinking more apple juice, but went along with her desire for more juice. She just asked me if she had to drink it all, and I told her to drink it to the 3. Then she said, "I think I can drink it all." Oh me. It looks like it is going to be an interesting day. I really hope we are out of the clinic before noon. If her counts are up, there is a trip to Chuck E Cheese in our future!!!



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

Her counts are still at zero. Her platelets were only 11,000 so she is getting 250 ml of them right now. That is the second time this week she has gotten that much. Looks like chemo will be delayed until her counts come back up. The doctor also mentioned we might need to look into other feeding methods aka feeding tube / g tube. Boo! Let's hope she puts some weight back on this weekend. As the cycles progress, it is normal for it to take longer to come back up because the drugs have a cumulative effect. Please pray she is able to get back up to around 32 or 33 pounds. Today she was at 29.6 pounds which altogether isn't too bad. She took all her meds yesterday and today so we are back on track with them (Neupogen shot, Zyrtec, Zantac, Miralax, Zophran, probiotics). Gotta run it is almost time to deaccess the port.... :( The best of the day is still ahead. Not sure what we will do, but it won't be Chuck E Cheese.

Platelets today, blood tomorrow

We are at the clinic now waiting on platelets. Her white count is .2, platelets are 17,000 and hemoglobin is 7.?. So, she will need blood too. They are going to wait and give that to her tomorrow though so she doesn't get too much fluids going in. That is fine with me because it takes about 3 1/2 hours to get blood and only about 30 minutes for the platelets. Of course, that is when they get here.

So far still no fever. She is starting to get nauseous I think. Last night she had a bite of chicken noodle and gagged it right back out. Today she is hungry, but she says her belly hurts really, really bad. She keeps trying a bite of different foods, but nothing seems to be good enough to keep her eating it. One bite is usually all she will eat. Except for M&Ms. She has had that along with 1/3 of a Pop-tart today. I am thinking it is nausea and not actual pain. Her belly has been hurting less than usual, so that is good. Maybe we have a good medicine regimen going for that. She is still on Zyrtec for allergies and Zantac for belly pain. I give the latter to her in lemon yogurt every morning, along with probiotics. She is also on 1/2 a serving of Miralax a day. I have not been giving her the Doc-o-lace they put her on last week to help soften her stool. I think the Miralax is doing a good job and she can't swallow the co-lace pills anyway. The shots are still going too. Looks like we will probably be on them until next week at least. She still doesn't like them too much.

She is in her "infusion room" now watching Barney. It is one she hasn't seen before, if you can believe that. She has now added it to her Christmas list. Oh yeah, she's already got a list for Santa started. LOL So far we have "Fly me to the moon," "Alvin & the Chipmunks," and now Barney "Round and round we go" on it. I can only imagine how big the list will be by December. :) I am thinking there is something else I am leaving off, but I will wait for her to remind me. We have also watched "Alvin & the Chipmunks" at the clinic this morning. I am hoping the platelets get here soon so we can get out of this place and go see my aunt. She is hanging at the pool today and we might just join her. Summer won't be able to swim though because they are leaving her port accessed since she has to come back for blood tomorrow. Right now she is fine with that because, as you know, she doesn't like for it to be deaccessed.

Tonight she is going to play with her cousins while I go play Bunco. I hope she is feeling up to that visit since she is kind of on the puny side now. They usually perk her right up, so I am sure she will enjoy it even if she isn't feeling great. I am hoping she does not get a fever this cycle, but if she is I hope she gets it soon. We are supposed to go to Lake Winnie with Lana's Love on Sunday. She hasn't been since she was a baby and I think she will really enjoy it. Of course, that might be too much to ask. We have had a rather uneventful past two weeks. However it turns out though, we will deal.

I want to take a minute to thank all of my faithful commenter's. I really do appreciate all your support, kind words and virtual hugs. You guys always lift me up when I am down and just knowing you are there rooting us on is nice. I am also grateful to those of you who pray for us. We are so lucky to have such a wonderful support system. Thank you all!

Homeward Bound

I hope! Summer is getting platelets as I type. They were only 19,000 this morning so I guess I'm glad we didn't go home yesterday because then she wouldn't be getting these platelets she needs. Her white blood count is up to .8. Still pretty low, but it is rising. Maybe we will be off the shots come Monday. The Dr. gave us the clear to book a quick trip to Florida so I did that yesterday. Now we just need the ANC to get up to a safe level and we will be in good shape. I am sure we will go to the clinic first of next week for another check so we can be sure she doesn't need any platelets or blood before we leave. Woo-hoo! I can't believe we are actually getting to go. I am probably more excited than Summer, but I'm sure she will love it. We are staying at Splash which has an indoor water park for kids so that is perfect since chemo patients should not be sun worshippers. Does anyone have a fast forward button because I am ready to leave? I'm sure it will be here before we know it anyway. I hope Summer is feeling more like her playful self by then. After the chemo is out of her system for a few weeks, she is usually back to normal. I just love that word. Normal. LOL Here are some pics from the past month. I hope you will enjoy them.


Barney being artistic in the clinic this week

Playing dress up






















Acting silly while helping Mommy make popcorn







I just love these sunglasses!
They will have to be packed for the beach!!!

Summer enjoyed the fair at the mall...

....especially the swings.

But, her favorite was something similar to the tilt a whirl. She loved going around and around and around.

Making thank you cards for her angels.

One of my old Jazzercise friends made her a cupcake hat.

Wearing her Curious George mask we made at the Discovery Museum.

Playing with her cousins is always fun for her!