Home and healthy

We are home. Summer is still feeling pretty good. She has been active today playing with me and Katie. We played hide and go seek earlier which I have decided is fun and almost like a workout. We played the other day with Daddy at the hospital too. :) Now she is taking a bath in the jacuzzi tub with Katie. They had some bubble fun and hopefully I got a good pic of Summer with bubble hair. I was hoping to get pics up tomorrow, but I don't think it is going to work out that way. Most of my pics are on my other computer and I haven't been on it in days. Every day that goes by, more pics are being taken for me to choose from. Gotta preserve these precious memories as she grows up!

She hasn't eaten much today. She had 2 or 3 bites of a hot dog, one bite of pretzel, 4 or 5 bites of chicken, 2 grapes and about an ounce of chicken noodle broth. Not enough! But, she did eat something so I am not going to fret too much. I forgot to see what she weighed this morning when they weighed her. I know she was down to at least 33 when we left, maybe lower. We are a little overdue for a Zophran, but I will get her to take that after I finish this. Then we also have the 1st shot of this cycle. I've already heard an "I don't want to do it." Fun, fun.

Hopefully, she will still be feeling good tomorrow so we can all go out for a birthday lunch.

Cycle 8, Day 1: Doing great

It's Friday night and we are watching Mickey Mouse Villains for the umpteenth time this week. It is kind of a Halloween movie with ghosts and silly stories and such. I hope Summer is over by the end of the month. :) Although I am not tired of it yet, watching it every day is starting to get old. It's about time for some more Barney. LOL She is laying on her new kitty cat pillow case, that Miss Ashley gave her, sucking her thumb and snuggling Teddy. What a beautiful sight!

Summer has done pretty good with the chemo today. She has been on several tricycle rides today and has only had one nap although she has been yawning all day. The drug she got today causes some nausea and vomiting, but so far none. She is on Zophran to help curb that. She hasn't eat much today. A little chicken noodle broth, a few ounces of apple juice and some chicken and rice that Memaw brought her. They are pumping her full of fluids so that may be why she is not hungry/thirsty. She is wanting some grapes right now which of course we don't have. She just called the nurses station to ask for some chicken noodle soup. She likes to do that. She also calls them sometimes when we have a urine sample. They used to not be able to understand her, but they are getting to know her pretty well now. Last night when they weighed her, she weighed 34.6 pounds. That's great! She has handled her last few cycles well with no vomiting at all. Plus she has been able to eat more since she is on Zophran at home too.

Last night some of our friends came and watched her while I went to an auction. They brought her a Piglet doll dressed up as a bunny and a rock with a squirrel in it. The rock is her favorite for sure. Her daddy came after they left and brought her a package of learning and writing tools that one of his friends wife had put together for her. She loved it. It has lots of fun things to help us pass the time either creatively or educationally. Yay! She also got a package from one of her angels today with stickers and a new flashlight. The girl is spoiled! I hope she doesn't go into withdrawal when all of this is done and she is off treatment.

I hope tomorrow goes as smoothly as today. There are different drug tomorrow though. Plus, I have the night off because she asked Memaw to spend the night with her so I could get a "good break." Can you believe that? She is thinking of me. I'm definitely doing something right with her. Anyways, I hope I can enjoy myself and not worry about her all night. We are trying to get some girls together for a girls night out. Keeps the positive thoughts coming our way!

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.

Cycle 7, Day 1 update and pics

Summer is doing pretty good at the end of day 1 of chemo. She has been pumped full of drugs today: heart protectant, 3 different chemo drugs, mesna, zophran. She weighed 34.3 pounds this morning which is the most she has ever weighed. My baby girl has all but disappeared over the past six months. No more baby fat or sweet innocence. She has been introduced to pain and sickness like she has never known in her short life. I pray that all of this is not in vain and she will be cured. She was a little nauseous earlier this evening when she saw the plate of food they brought her: baked chicken and mashed potatoes. I think it was all the green spices on top of the chicken that got to her, but who really knows? She made it to the trash can and didn't really lose too much. Wasn't much in there to begin with. All she ate today was a little egg, about 1/4 a piece of toast and some vanilla wafers. This evening she ate several black olives and some chicken noodle broth. We are currently waiting on more broth. I'm glad to see she is eating something. Now, here are the pics I promised.

Decorating the sugar cookies she just had to make (but didn't eat any of....) The final product of our work: turtle, heart, lion, tree & koala bear cookies

Lexie eating a jar of veggies and rice

she's starting to teeth at 11 1/2 months

Summer is dressed in my pool wrap

Playing in water downtown

Wade helps Katie and Summer with their fish

Wearing the flowergirl's dress from my wedding

Her picture on the Walnut Street Bridge

How adorable is she????

I love you!

Daddy carries his tired little girl

Posing under her pic

Our family of three

Summer eats some goldfish at the United Way fair

Katelyn, Summer and Liliana go way back....well 3 years :) Swimming and making faces

More funny faces

Smiling for the camera again. What a lucky day!!!

Summer was a prankster giving family members a pizza box with a toy rat in it. LOL

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.

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!

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.

Cycle 6, Day 2

She is sleeping peacefully beside me as she finishes up her chemo for the day. When I started to eat lunch (spaghetti) about an hour ago, she threw up. So I guess the sight of it made her nauseous.

Last night she weighed 33.4 pounds which was up from about 32.5 the day before and 31.9 the day before that. That is awesome! She hasn't eaten anything but a few bites of yogurt today. She also had about 6 or 7 ounces of orange juice, about half of that came back up. I doubt she will be up for eating anything else today. More than likely she will sleep the rest of the day, but maybe not. My aunt is coming to give me a break in a bit and I hope she brings a book. I kind of feel bad leaving her here with Summer just sleeping, but I do need to get out of this room for a little while.

Earlier, she was hoping to go out and ride the tricycle after her chemo was finished for the day. Now I'll be surprised if she gets on it at all today. She was on that thing a lot yesterday. She can go really fast now and you can't drag your feet when you follow her pushing the IV pole.

Please pray she rests peacefully and doesn't empty her stomach anymore today. She's such a trooper and is so blessed to have so many praying for her. Thank you all!

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.

Finishing up the Doxy

Summer is almost through with her chemo for this week. We will get out in a few hours. I know it will be good to be home again since we haven't been there much in the past week between Florida and chemo. Next week we come back for a push of Vincristine in the clinic. Same the next week. It seems her body is adjusting to the chemo since she has not been sick at all so far this cycle and is still eating (although not as much). I weighed her this morning and she is still holding at 33.2 lb. That is great seeing as she usually goes down some before we go home. I wonder what the weekend will hold. We have two birthday parties ahead of us so I am hoping for more of the same feeling good little girl we have had all week.

Yesterday, she played and played and played. I thought she was going to take a nap around noon (and boy was I ready!), but that was just a tease. As soon as we got in the bed, she wanted to hide from Memaw who wasn't due for another two hours. :) Then we told each other silly stories, all starting with "Once upon a time." It was fun. She really wanted to go to the rooftop garden all day, but she is confined to the room while chemo is pumping so she was denied that priviledge. Around 8:00, I was ready for bed, but she was not done playing yet. She was acting silly and jumping on the bed, climbing on me, and just being a pure joy to be around. Maybe if it got dark before 9:30, we would've been able to go to sleep then. As long as it is daylight though, it is not time for bed in her mind. LOL

She is such a sweet girl. Last night when she got up to pee, she said the sweetest things like: "Mommy, I love you so much." Of course, I can't remember anything else, but she is a sweet heart. Oh yeah, when I asked her if she needed to pee she said, "Yes ma'am." Then she said, "Mommy, is that polite?" I am really hoping she keeps these manners she has learned up through her teen years. I guess as long as we are consistent in what we expect along the way, she will turn out just fine. I learned with my stepdaughter that wishy-washy parenting does nothing in terms of gaining respect from your child. A lot of kids these day are growing up without respect for anyone, let alone their parents. Sad, sad, sad.

I wanted to take a minute to ask everyone to pray for a family from our clinic that is truly battling for their son's life. Hospice was called in this week and I can only imagine what they are going through right now. Here is a link to his page: Jayden's Page. Please lift them all up in prayer.

Chemo Cycle #4

To our good fortune, we are in a "big" room. This is the same room we were in for the last even numbered chemo cyle (which is the same drugs as this cycle). I am having a few flashbacks, but hopefully it won't be the same or as bad. I am scared of this cycle the most though. It messes with her brain and she kind of gets lost in her head and then eventually sleep. Thank God for sleep! I really need some myself right now.

Summer is done with chemo for the day and doing great. She received a drug called Carboplatin over 1 hour around 11:00 this morning. She's been on Zophran every 6 hours since 2 a.m. So far, no visible side effects.

She is eating like a champ. Chili is the food of the day. She passed up her Frosted Flakes, saying her belly hurt. Then I remembered the chili I left in the clinic fridge the day before. When I mentioned it, she wanted it. She even let me leave her to walk over to the clinic. It is crazy because some days she won't even let me walk down the hall to get a cup of ice. Anyway, she wanted the chili so I went and, luckily, it was still there wrapped up in a bag with Summer's name on it. Yay!!! She ate most of it (which I had added a spoonful of fiber to) for breakfast, but then at lunch time finished it off. She wanted more chili. I had brought a can of chili beans from home, so I found a can opener and she ate almost the whole can. I think I am supposed to be bringing her more chili from Krystal, but I'm going to call and make sure before I head back. Tomorrow is chili day at the hospital cafeteria!!!

She also had chocolate ice cream this morning which is a first. Usually she just takes the one bite, and is done with it. Today, since we have a "big" room, I put it in the fridge instead of the garbage. At home, she likes to eat ice cream sandwiches for breakfast after she takes her meds in a crushed up bite. She has also been enjoying those heavenly cookies our neighbor gave us too...working on the last one - a pink fish. :)

Her weight, 32. 5 lbs. or 14.8 kg, is an indication of just how much she has been eating since we got out of the hospital. I am so happy because although she might lose a few pounds when she is not eating, she can recoup quickly. The decrease in appetite usually occurs when her counts drop, I think. She hasn't been very nauseous like she was the first cycle. Or, she is just better at controlling it. I am still trying to figure out the pattern, and there probably isn't a "perfect" pattern, as can be evidenced in another little boys journey with kidney cancer. I have been following his mom's blog, and her mine, for a few months now and I am so very fortunate for how much we are NOT in the hospital. Please pray for them. His name is David.

Maybe writing all the details here will allow me to piece it together eventually. That is if I actually had time to sit down and analyze it. Or, wanted to. I have more important things to spend my time on....like my daughter.

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.