Flying colors!!!

Summer had her physical therapy appointment yesterday. The lady didn't really see a big problem that can't be fixed with a few exercises at home. So, we opted not to go for a 6 week session with her. Who wants to go to the doctor when you can be home? Or at the pool? Swimming is one of the activities she recommended to help strengthen Summer's legs and overall body. So, lessons it is I guess. There doesn't seem to be a lot of problems in her legs due to the vincristine (Praise God!), but maybe just a lack of overall endurance due to spending much of 8 months laying around. That was great news to me, and I was so relieved to have just been a little bit of a worry wart. However, I have noticed myself stumbling a lot more since the visit yesterday and am wondering if I may need some physical therapy myself. LOL

Her first dental appointment went well today. We got lucky to get a friend of a friend as Summer's dental technician. So, there was a connection to start with. Her son also plays t-ball against Summer sometimes. Summer was pretty apprehensive about the whole appointment, and I am thankful that it turned out the way it did. The dentist said her teeth look great. He was not at all worried about the gap in her front teeth and says that is good for when her other teeth come in. I told him I thought it might have been due to her thumb sucking (which she STILL does), but he said she probably just had a lot of space to start with.

Yesterday, Summer was a big talker. Josh was with us for a few hours, and she talked his ears off. I know he was wishing he was in the front seat instead of me, but he did a good job grinning and bearing it throughout the time he was with us. It was neat to see how she engaged him and wanted to show him all of her "cool toys." Like, how cool is it really going to be to a 24 year old? It made me smile to see her trying to entertain him and be his buddy. I know she is probably hoping to do the same thing to her big sister today when she drops off Lexie, but I doubt she'll have as much time. That's okay though because Paw-Paw will be here shortly and I'm sure she will be wrapped up in playing with him.

Cycle 8 ends: NO MORE CHEMO!!!

Summer is sleeping off the chemo she got today: Iphosmafide and Etopside. They are the "crazy" drugs that make her brain function abnormal so she is in a highly agitated state when she's awake. She has woken up with pee in her panties once and two times in a diaper. She would've had the diaper on for the first pee, but when I tried to put the diaper on after they had started the chemo and she had thrown up on herself and the bed, she did not cooperate. So, I agreed to let her pee in her panties once before the diapers went on. Boy, was I right on the money with that one. :) She cried when I left for a bit this morning. They gave her some Benadryl after her chemo was finished to help sedate her, but when she wakes up, she is upset. She was whimpering and crying out "Mommy" when I got back. It took about fifteen minutes or so for her to calm down and fall asleep. Then the phone rang and she stirred whimpering and crying out "Mommy" some more. I am hoping she is in a deep sleep and will awaken (before she pees on herself again) in a less agitated state. It is so hard to watch and not be able to do anything but hold her and comfort her. I can't take the pain away though. Poor baby. I am so glad this is her last one though. Hopefully, the worst side effects are over for the day. I am sure she will have little or no body control again though until sometime in the middle of the night.

This morning when she woke up, she was ready to ride the tricycle. I'm not sure I should have let her though because she was still a little wobbly in the head. She did good though. After we were back in the room, she was walking around knocking her head in the wall and food tray. She sat and played with her laptop a little while and let me do the same. Then when she was done, I cut mine off too and we got in the bed. She wanted to nap a little before they brought the dogs by today (they have animal therapy just about every day M-F). We laid down and then the Dr. came. We got Leah in the bed with us and showed her off to the Dr. Then we played with her for a bit after they left. It was nice to have a little fun before the chemo kicked in.

I wonder how long it will take her to crash from this round and what she will feel like the rest of the week. I hope she is not completely zapped because, of course, we have several fun activities we could do the rest of the week if she is up to it. No pressure though. I'm not going to drag around a sick little girl and try to force her to do fun things. That wouldn't be fair to either of us. But, should she be up to it, we will have a fun rest of the week. I never put off the fun parts in life. You have to enjoy it while you have it because you never know which tomorrow will be your last.

On a lighter note, retail therapy has been my friend this week. I have shopped the past two days for clothes, shoes and Christmas gifts for Summer. Yesterday, I hit the clearance racks in a few stores in the mall and today I went to a consignment sale. The girl racked up! I hope these clothes will get us through to spring and beyond. I can't wait to show them to her when we get home tomorrow. I think she will be excited to see them. I even found two more pairs of footed PJ's (one with a cat on it). Of course, all the clothes are mostly pink and purple. I did get a few red holiday type shirts too. We love to dress festive! I even bought a cheesy gingerbread outfit. She had one last year, but I'm pretty sure it will be too small this year. Clothes rarely last two years around here. I guess that's normal though. Kids keep growing and growing. Glad to see we haven't lost all sense of normalcy. I can't wait to get back into a more "normal" routine. It won't be long now!

One more day of chemo to go!

Summer is sleeping right now. She was having some crying fits so I got them to give her some Benadryl to help calm her. She is wearing a diaper which in itself is a little upsetting for her. But, it is necessary right now because she does not have complete control of her body. Earlier she woke up crying because she had wet herself, but she couldn't tell me that. She can't really verbalize her thoughts right now. I hate to see her like this, but a mom has to do what a mom has to do. I have to take care of my baby. I'll be so glad when Tuesday morning rolls around and this part of the nightmare is over.

When I got here this morning, she was so happy to see me. It was great to see her in such high spirits. She ate some Doritos and some lemon yogurt. She also had a little water to drink. I'll be surprised if she eats anything else today. I really just hope she sleeps it off so her body can rest and heal while the chemo is doing its thing.

I've been trying to decide what to do for her no more chemo party. I think I am leaning towards bowling. She said the other day she wanted to go sometime. That is what we did for girls night out last night and it was fun. We almost had them put the bumpers up. LOL Anyways, we will wait until her counts are back up and she is feeling good before we try to have it. No need to rush anything.

Keep your eyes open for pics sometime this week. I know everyone is anxious to see Leah (our new cat). :p She is here at the hospital with us. I just love electronic pets! Guess who is getting toy hamsters for Christmas. Yep, my little girl. Time to stock up on batteries!

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!

She made counts!

Tomorrow Summer starts cycle 8 of chemo. HER FINAL CYCLE!!! It is quite exciting to be at the end, but nerve racking too. She'll have a scan in a month and then every three months after that. All of the "big" oncology rooms are closed right now because of some renovations going on in the floor above them. So, we are in a part of of the floor we have never been in before. It is only nice because it is close to the parent kitchen. Unlike the big rooms, regular hospital rooms do not come with your own little fridge. So it is good be right across the hall. Still, there will be bathroom problems I'm sure. Getting there can be quite frustrating when you have to tote a three year old and their IV pole through a small space.

There is a Last Chemo sign on Summer's hospital door (room 329). We are both excited to have this underway although she did put up quite a fuss for the finger prick and port accessing today. She's never gotten used to them.

Please pray and send lots of positive thoughts our way the next few days as she gets ICE (her chemo regimen). Last time she hallucinated and lost control of her body and would NOT go to sleep. I hope the chemo does not have any long lasting effects on her body. I am so scared of the long term side effects she is yet to experience, but I'm not going into that right now. I gotta get back to my baby. Memaw stopped by for a few minutes so I ran home to change. Have I mentioned that Memaw rocks? Because she is the bomb!!!

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.

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.

She's a camper!

Last night, Summer camped out with Memaw and Nanny in a camper on their property. They had a campfire and roasted hot dogs and marshmallows. It sounded like they had a really good time when I called and talked to Summer this morning. She asked me if I would go camping with them sometime. :) I think they might go canoeing today.

Yesterday was her Muga scan. We do not have the results yet, but should get them on Tuesday when we go in for cycle #7. I am curious to find out the state her heart is in, but worried at the same time. I'm not sure how comfortable I'm going to feel with her getting the Doxyrubicin even if they think her heart is strong enough for it. I just don't want to see her suffer any more than she already is. I will just put it all in God's hand though because He is in control anyway. Her port is not getting a good blood return thanks to a nurse who didn't use the right heparin before she deaccessed her. They tried putting something in it yesterday to unclog it, but it didn't work. I think they will try again on Tuesday. I really hope they do not have to replace it and so far they are not talking about it, but they do have to get blood out of it so if it doesn't start working.....

I can't wait to get back to her tomorrow. I sure do miss my little girl!!! Three nights away is plenty right now although a week on a tropical island does sound pretty tempting.

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!

Echocardiogram shows....

On Tuesday they did an echo of Summer's heart to see if it is strong enough to handle her last dose of Doxyrubicin which is due with cycle #7. The echo showed that her heart is borderline and is probably not in good enough shape to handle another dose. I'm not sure if that means it is really damaged or just on the brink of being damaged. Either way, it's a little scary. There is a heart protectant drug that they could use, but the hospital doesn't have any due to manufacturing problems and it not being available. So, I think the Dr. is leaning towards skipping the Doxy and just doing Cyclosphamide with cycle #7. He doesn't think (of course no one really knows) that another dose of the Doxy is crucial to her being cured of the Rhabdoid cancer. At the end of treatment, she would still of have received 23 of the 24 chemo meds in her regimen. If they do decide to skip it, cycle #7 will only be a one night hospital stay.

On a good note, Summer's fevers are down to about one a day. Yesterday it only went up to around 101 once. Yay! She seems to be feeling better although she still sleeps quite a bit. She is eating pretty good now. She's had 1/2 of a PB&J, a little yogurt and some turkey slices this morning. She ate really good last night too. So, things are looking up.

I don't know how much longer we will be in the hospital. We might be waiting on her counts to come back up before that happens or just for the fever to go away for 24 hours???? Initially they said the treatment for the cellulitis was 7-10 days on antibiotics. I'm not sure if they can send her home on them or not. I'll have to ask the dr. when he comes by today. I'm starting to get antsy, but I am working on my patience. This is such a fun place to be. At least we have a Nintendo 64 in our room right now. I just discovered a tetris game which I might have to try. Mario is getting old. LOL

Summer hasn't been very playful this week and has hardly been out of bed except to potty. I am hoping today she will feel like going to the rooftop garden for some fresh air and maybe a tricycle ride. I am really missing have a playful, active little girl. I surprised her with a Caillou video last night when I came back from a church meeting. We have already watched it twice. :) I got a new Barney movie too, but she hasn't watched it yet. She just told me she guessed we can watch it now....if it is good. LOL I just love the way her mind works. She always seems to put a smile on my face and I am so thankful for that.


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

The Dr. just came by and said that they are going to do another scan of her heart next week. The echo they did is very sensitive to the person doing it and where they put the monitor or whatever on her chest. This new test will be more accurate and give us a truer picture of what is going on in her heart (not that there is anything major to be worried about right now). Then they will decide whether or not to do the Doxy. She may get to go home before the weekend is over. They are waiting on her counts to get up to 500 at least. Today they are around 120 I think. She will probably go home on the antibiotics to treat the cellulitis. They popped and drained one of the spots yesterday so they could get a sample of the puss and see what it is. So far they know it is a form of staph but they are not sure if it is the resistant kind or not. We just have to wait and see what grows on the sample they took.

btw - She did like the new Barney movie ("Once Upon a Time"). Afterwards she said, "That was good." Go me!!! Also, she has been smiling quite a bit today. It is kind of contagious so if you need a smile today, stop by the hospital and see if you can catch one.

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!!!

She got a bolus

This morning there were trace amounts of blood in two of her urine samples, so they gave her a bolus to flush her out before starting chemo today. These drugs can cause your bladder to become toxic which in turn damages the bladder. More than likely this is a minor thing and not something to be overly worried about. They are going to give her Benadryl after the Iphos. but before the Etop. today (that's chemo slang....LOL) The Iphos. is the one that can cause seizures, but the side effects do not generally start until after it is all infused and the next drug is started. I am SOOOO happy they are pre-medicating her today. It is no fun to sit and watch her body convulse for an hour. I hope her thumb is not in her mouth yet. It really needed a few hours to air out. It is looking kind of funky which is really par for the course. Summer told me this morning that we need to soak it in water. Of course, we'll have to put some Epsom salt in there too so it can do its magic. I doubt we will ever get around to that though. It depends on how it looks when we get home tomorrow. Her cooperativeness plays a part too, but if it is really hurting she will usually do what's best for her thumb and let it soak.

She was on the tricycle again this morning with Paw-Paw in tow when I left. I'm glad she felt like riding some before chemo started. It is her exercise, and yes SHE did call it that. :) It is also good exercise for whoever follows, especially when you add in some walking lunges.

She had some Frosted Flakes with milk for breakfast, but not too much of it before she was "full." Then she drank a carton of OJ & Miralax. She still has not pooped since Thursday. I can't believe it, but it must of been all the cheese on the sandwiches???? When we get home we will get it all straightened out though I am sure. On the other hand, she wants me to bring her tomatoes and balsamic vinegar when I go back to the hospital (she gets this from her Daddy). We'll see if she eats any though.

Last night (in the evening) she was conscious and fidgety and seemed to be uncomfortable. I called the nurse and asked if she could have some Benadryl. Then I asked Summer if she wanted to go to sleep or stay awake. I told her they could give her medicine to help her sleep and make her feel better, but she grunted that she wanted to stay awake. She doesn't talk very much when she is on these drugs. About all you can get out of her is "I need to pee." Maybe a nod or a head tilt. And, that's what I got. When the nurse came, I told her I asked Summer and she didn't want to sleep. Since she didn't seem too uncomfortable or fidgety, I let her just lay there beside me drifting in and out of sleep. And, of course, giving that thumb a good sucking. She had a pretty peaceful night and slept really hard wetting her panties a few times. I noticed that she is not peeing as much at one time as she usually does on this cycle: 150-200 ml vs. 300-400 ml. Don't if that has anything to do with the blood in the pee, but just wanted to make a note of it while it is still in my head.

As always, please keep praying and sending positive vibes our way!

She's twitchy

Today has not been the smoothest day for Summer. She started twitching and jerking during the administration of the last chemo drug. They didn't want to really treat her twitching while the drug (Etopside) was being infused so they would know how bad of a reaction she was really having. After it finished, they did give her some Benadryl to take the edge off. It helped her to be able to fall asleep and stop twitching so I was happy after that. Kind of nervous before because there was nothing I could do but sit, watch and try to reassure her she was okay all the while feeling completely helpless (and scared) on the inside. I just kept waiting for it to go to a full blown seizure, but it didn't. PTL! One more day of this drug and we are done with it until cycle 8.

Last night she wanted some California rolls after opening a piece of mail from one of her angels. Her angel mentioned that she was going to California and that set Summer off on the "I want some California rolls right now" spill. I didn't expect her to eat them if we got them, but I tried to get some from the cafeteria. Guess what??? They only serve those on weekdays. So, I called Daddy to see if he could help us out and bring some seeing that we only live a couple of blocks from a sushi place. We finally got him to come and she gobbled them up, all but one that is. I was amazed. She really didn't want the avocado or crab meat out of them, but she enjoyed the rest. I guess those two things didn't match her palate last night. She also had some apple juice which was great because I was able to get her Miralax in her via that.

Today she hasn't really had much to eat. A few bites of yogurt and some OJ is about it I think. Oh yeah, and the last California roll. :) That was all this morning pre-chemo.

She is lying here next to me now sucking her thumb into a very bad condition. I'll just say the skin is coming off on some parts. Ever faithful Teddy is in her arms giving her the comfort that only a stuffed bear can. She looks beautiful. I just can't wait until she beats this ugly disease.

Please pray for her and all the other children out there fighting for their lives. I also encourage you to go to your local blood bank and give blood or platelets if you can. Summer needs them both regularly and she is not the only one out there. Remember, it is better to give than receive.

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!

Cycle 6 is underway

Summer was admitted to the hospital yesterday. Her platelets were up to 94,000, her ANC was about 1700 (from my calculations), and her hemoglobin was 7.6. She is getting blood today to bring her hemoglobin up. The "normal" range is 11.4-13.9. She will not get it until this afternoon a couple hours after she gets her first dose of chemo - Carboplatin. She gets it over an hour. Tomorrow, Sunday and Monday she will get Iphosmafide and Etopside which are the "bad" drugs in my opinion. Of course all of the chemo drugs are good and bad. They are all poisons/toxins, but they help to kill cancer so she needs them. The drugs she gets over the next three days kind of mess with her mind which can be pretty scary if she is awake. Well, its scary when she is asleep too. Thankfully, they keep her pretty sedated after she gets them so she will be mostly sleeping for the next few days starting around noon (give or take an hour). I already have a few people lined up for relief everyday so that is AWESOME!!! I will be forever grateful to them for letting me keep some of my sanity. What isn't already lost anyway. LOL

Summer was riding the tricycle when I left this morning. She has had the best time on that thing the past two days. Last night we went to the rooftop garden after my mom & Tre left. She wanted to ride the tricyle, but it was hard because they have artificial grass out there which doesn't allow for smooth sailing. The hospital halls are a different story. I don't think I've ever seen her have that much fun on a tricycle. She rode it for about 30 or 45 minutes straight. She kept telling her Barney shoes to go faster. It was funny! They have a few "hills" in the hallway which are really her favorite part. She almost crashed a few times (they are not that steep) which made my heart pound and hers too. But, those were her favorite times. She absolutely LOVED them. Haven't seen her enjoy herself so much in a while so I am really treasuring those memories right now.

Not sure what the rest of the day will hold for her. But I see a few games of "Pretty, Pretty Princess" being played. We played twice last night. I won the first time and she won the second. Of course, I think she took a few extra pieces here and there in that second game. :)

What she wore grocery shopping....avoiding looking at the camera as usual.

She has been eating great the past few days. I have made a couple of middle of the night grilled cheese sandwiches. Then she would get up and eat them for breakfast too. I doubled the cheese in each one. Can't have too many calories!! She got up this morning at 4:00 and told me she was done sleeping. I cut on cartoons and told her I was going to keep sleeping which she seemed fine with. She also said she was hungry and asked for an Oreo which she ate half of. A few minutes later she was ready for bed again. PTL! Her food palette really changes all the time. She will get stuck on something and eat it for days. Then never again. The other day she wanted these snacks when we went grocery shopping: Oreos, cupcakes, cotton candy and peanut butter crackers. She also wanted some rice krispy treats, but I didn't know what she was talking about. She kept asking for the stuff with the marshmallows so I should've figured it out, but all I could think of was hot chocolate and that wasn't it. Oh well. I think my aunt is bringing her some tomorrow. Did I mention how I love visitors????

We went to the zoo the other day with some friends - Alicia, Liliana, & Laila. We also had Lexie with us. It was fun even though Summer got bit by the pony at the petting zoo. He barely nipped her elbow. The bite could have been mistaken for a nibble from my mouth it was so small. Luckily, she forgot about it after we left that part of the zoo (as had I until now). I think Summer's favorite part was the carousel. She wanted to ride twice, of course.

Please pray that the next few days will be uneventful for Summer. Can't wait til Tuesday! Then cycle 6 will be over.

Mouth sores are no fun!

We are home. Summer hasn't had a temperature in over 48 hours so we were good to go even though she is still only eating chicken noodle broth and icing. She did have a couple of bites of yogurt with her allergy med mixed in this morning, but it was not a happy couple of bites. When we got home, she told me her belly was hurting so I gave her some Benadryl. She watched Barney then Veggie Tales then took a nap. We will probably stay at home the rest of the day. I am cooking dinner and we may ride the bikes later if she feels like getting out. If not, we I will be cleaning her room.

Her mouth and belly still hurt. She started swishing again last night when I realized how bad the mouth sores were hurting her. I looked in her mouth and all I can say is "YIKES!!!!" I hope they clear soon so she can eat more foods. She tried a hot dog yesterday, but couldn't eat it. She even got to where the icing hurt her mouth. To top it all off, she COULDN'T suck her thumb. Misery. It must have been hurting pretty bad because that thumb has been in her mouth all week! She got some morphine for that pain last night and then drank a lot of broth....like 3 cans worth. Yay for morphine!

She is not feeling well right now. Complaining of belly pain, but watching cartoon on the couch. I have a couple of fun crafts when she is up to it, but today will probably not be the day. We are back to the clinic tomorrow for the last chemo for cycle 5. Then we will hopefully have the rest of the week to "party like rock stars." LOL Next week we are back in for cycle 6. Unlike most, I can't wait for this summer to be over. That means we will be just about done with chemo which is where we all want to be.

400th blog post about my beautiful baby girl

This morning I was looking at my beautiful baby girl, I mean big girl, and noticed some new growth on her eyelids. Little, blonde, baby eyelashes. I wonder if they will darken up as they grow out. I also noticed that she is down to 1 long eyelash on the right eye and 2 on the left. I just love looking into her big brown eyes too. They are so deep and rich, like good chocolate. (okay, that was slightly corny) Her tan face is surrounded by straggly blonde hairs, mostly at her hair line. There are a few other hairs on her shiny, tan head. It just amazes me how shiny your head is compared to the rest of your skin. She looks so healthy right now. If it weren't for the lack of hair, you wouldn't be able to tell anything was going on with her. I am so thankful that she is doing this good.

We will probably stick close to the house for the rest of the week. Her counts are dropping now and risk for illness is going up. We do have an appt. at the clinic tomorrow for a push of Vincristine and a count check. Hopefully, it will be a quick visit. The past few weeks I have noticed it taking less time for these appts. Of course when you are there for admission, you spend the whole day in the clinic waiting for a room. Luckily, we have two more weeks before our next admission....for chemo that is. A fever would land us back in there too in which case we would probably bypass the clinic and go straight to a hospital room. I looked at my calendar the other day and it looks like we may actually finish up with chemo by the end of September. We haven't had too many delays in her treatment. Everything has gone pretty much as expected, if not better. I don't think I could ask for anything more than we have received from God. I believe He is going to let me keep my baby. That's what it is all about.....believing. Putting your faith in His hands and letting Him take control.

Oh what a journey is this thing called life!

Update: Jayden went to be with the Lord yesterday afternoon. Please keep his family in your prayers in the days and weeks ahead. I can only imagine what they are going through at this time.

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.

No day to recuperate

It was straight into the hospital for us. Of course, we knew it was going to be this way last week when we left. She starts cycle 5 of chemo tomorrow so she had to be admitted today for fluids. Yesterday on the way home from Florida, she asked if she only had one more cycle of chemo. I told her there were 4 more. Boo. She also commented about how her hair hadn't grown back. I guess she thought vacation was long enough for it to grow back?? I guess she is ready for it to be back. I wonder if she notices when kids stare at her. I know I do, but it is just part of life for the time being. I noticed in one of the pictures below that the kids in the lazy river were staring. Oh well, I can't say I've never done it. You just never realize how much it goes on until you are the one being stared at and/or whispered about. This cancer thing really opens your eyes a little lot.

I can't really recall what to expect this week from the chemo, but maybe I'll do a little looking back if I have time. Things really get jumbled after a while. But, there is light. We are on the downward slope. We'll be on cycle 8 before we know it!

On the way to the Dr. this morning, Summer muttered "I hate going to the doctor." I asked her what she said and she was all "nothing." Poor girl. She is doing good all in all. Although, not as bright at times, her spirit is still shining. She will get through this and be stronger for it. We just have to manage to keep a smile on our faces during the mean time. Some days it is easier than others, but everyday contains at least a few!!! :)