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!

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!!!

Hot dog, hot dog, hot diggity dog!

Summer is up eating a pb & banana sandwich. She actually slept until after the sun came up today (7:15 a.m.). Yay! Sounds like Daddy is up and bugging Summer already. I am thinking about taking Summer to see her great grandad today. He hasn't been doing well lately and she is feeling well enough to go visit now so I hope he is up for it too. We might also take a trip to the playground or somewhere else fun in Trenton. Oh the choices....NOT. The town is pretty small and we could either go to the playground or a state park as I see it.

Yesterday, we went to the zoo with our friends Selena, Willow, Mo & Mason. We had a picnic lunch before we toured the zoo. Summer rode the carousel once while we were waiting on the other kids to get there. Then after the zoo, she rode it twice. Her friends wouldn't get on it with her, but I don't think she minded. She really likes the carousel. I am thinking of taking her to Lake Winnie on Sunday if she is up to it and her counts are up. She hasn't been there since she was a baby, and they will be closing up for the winter soon.

We also have more fun scheduled this weekend at Camp Agape. They are having a children's fun day which is for childhood cancer patients and their families. SpongeBob is supposed to be there. They have a gingerbread house full of candy for the kids to fill their bags with. Horseback riding, fishing, petting zoo, dunk tank, face painting....it should be fun for sure! They are also doing fireworks, a hay ride and dinner the night before. We could camp in one of their cabins on bunk beds, but I don't think I could sleep through other people's snoring and noises. We may take a pop up camper if they will let us. Already got the call in.....

Summer's belly has been hurting the past day or so, so she is back on the Zophran. She is still eating good although she will ask for some things and eat only a bite or two which is a little frustrating when you are the one who ends up finishing most of the stuff she doesn't eat. Not too good for the figure, but I am still doing the P90X dvds in the hope that exercise without dieting will still do my body good. :) I have only missed one day so far which is pretty good considering I was working out once or twice a week at the most. Summer only bugs me a little when I am doing it. It is not too annoying except during yoga when you are supposed to have a clear mind, but I am so worried she is going to start climbing me like a piece of furniture I can't clear my mind with her in the room. Or she starts singing. Or sniffing my arm pits. LOL So, anyways, at least she is eating. Now she is working on eggs and angel food cake. Her first piece since we made it two days ago. Half of the cake is gone and guess who is responsible for that. Should be an easy guess. ;P Apparently, she only likes the brown parts.

We go back to clinic tomorrow. It is supposed to be a zoo in there because they are closed today due to a COG conference. We have the earliest appt. (8:30 a.m.) and I think we might just be 15 minutes early to make sure we aren't stuck in a long queue in the waiting room. Last time our appt. was at 9:00 a.m. We got there at 8:55 a.m. and were behind at least 6 other patients. I hope her counts are up. She is very tired of the shots. She is happy to have only "one more spend the night" for chemo and "one more shot" round (usually around 20 per cycle this late in the game). We are on shot 13 for cycle 7 today. I don't really think we will make chemo next week seeing as how she should have another week of shots if the trend holds. Plus, the doctor said the heart protectant they used last cycle can also cause her blood counts to remain lower longer. Oh well, only one more cycle. PTL!!!

Cycle 7 starts tomorrow

We are in our small (booo!!!) hospital room where we will remain until Friday morning. Summer's counts were up today although I'm not sure what they actually were. I did ask the Dr. today what the 55% meant on the Muga scan. It is the volume of blood that leaves the heart when it contracts. Normal is between 50 & 60% so that is a very good number indeed!!! I told the Dr. that I thought it meant only 55% of her heart wasn't damaged and he was glad I did because he had never thought of it that way since he knows all of the stuff like the back of his hand. He could see where I came up with my deduction and was glad to know for the future that things should be explained a little more for us non-medically educated parents.

We had an awesome week off. It is always good when we get to the end of a cycle because she is feeling good and acting like a normal, healthy kid again. I am sad to see that brightness fade, but hopefully it will take a few days for the chemo to bring her down from her current feel good state. She still complains "my belly hurts" a few times a day. Mostly it is at night or when she is eating or doesn't want to do something. lol I took her off the Zantac a week ago and she still has the same amount of discomfort. No more, no less. I don't see any sense in taking it and no one has disagreed with me so far. I also stopped giving her the allergy med about the same time. She hasn't had any nasal or respiratory problems since then so I assume she doesn't need it. The only home med she is on right now is the Miralax which I will not stop until we are done with chemo. I know she needs it to keep her poop nice and soft.

She has said so many cute things over the past few days, but for the life of me I can't remember them. Oh well. Good thing I have this blog to look back on all the things I did remember when it came time to sit and blog.

She is curled up in the bed now. Not sure a 5:00 p.m. nap is the best thing, but I know she was sleepy. We were in the clinic from 9:15 a.m. until about 3:00 p.m. which does not lend well for an afternoon nap. I hope she still sleeps good tonight and isn't up before the resident gets here in the morning. But, as the saying goes, whatever will be, will be. Please pray that she doesn't have any major reactions to the chemo this week and her heart will remain healthy enough to not require medication for the rest of her life.

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.

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'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.

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!!!

And away we go....

Summer's counts were up to 280 this morning. She did not need any blood or platelets, but still has to keep the shots up for two more days. I told the Dr. that I wanted to wait until next week to start cycle 6 since she is still below 30pounds (29.9 this morning). I am hopine we can fatten her up a bit this week so that she will be in better shape going into her next cycle. Her counts are not up enough to start until probably the end of the week anyways, so I don't think a few more days will hurt. Sooooooooooo, I decided to invite my sister and nephew to go a on quick beach trip while we wait on Friday to get here. That is when she goes back for counts again. We are on our way and it seems like we will never get there. The "how much longers?" are coming every 5 minutes. LOL

Summer started eating more over the weekend, but is still not eating like a starved child like she usually does when a chemo cycle is almost over. I actually had Clint go buy some hotdogs last night because that is what she likes eating right now. I believe those are the first hotdogs we have ever bought for Summer to eat. She does eat them at my mom's or other places, but they are definitely not something we keep in the fridge. I hope her appetite increases more in the next few days.

This week should be fun and relaxing I hope. In the meantime, can I get another, "Are we there yet???" :)

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.

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!!! :)

11:11

Everyone in the house is asleep but me. We were all dressed and ready to go to church this morning, but when it was time to leave Summer was on the couch asleep. I figured she needs rest because last night I don't think she went to bed until around 1:00 a.m. That was her latest night up ever, at least that I know about. We had so much going on in the house, she just couldn't give all that up and sleep in her bed. She wanted to sleep on her little couch in the living room. So, I agreed, read her two books and tucked her and Teddy in. I went to bed shortly after her only to be awakened by her a few minutes later. Apparently she had to pee and didn't get there for some reason. She actually peed in the floor which is VERY unusual for her. I guess she was so exhausted she didn't want to get up and I don't remember her going to the bathroom before she went to bed anyway. I did get her teeth brushed, but only after telling her she would have to do the mouthwash if we didn't brush them. I guess brushing teeth is better than swishing.

She has vomited about three times this morning. I tried to give her a Benadryl chewable tablet (grape, of course), but it came back up. That is when she drifted off to sleep where she remains now.

We finally got to see Lexie last night. She is actually here sleeping too. We played this morning while Summer and Clint were napping. Summer helped me feed her a bottle briefly, then I turned it over to Pops (????) so we could shower. Summer actually threw up while I was feeding Lexie, but being the big girl she is, she made it to the garbage can. :) After that, she was ready to get her shower over with. First one since Monday.

She was happy to have Ms. Patti to do her port yesterday. She actually wanted her to be the one to put it in when we go next time. :) Usually that happens in the clinic though...unless it is a fever. We will just have to hope she is working that day, should when it comes. I am hoping we make it through next weekend without a trip to the hospital.

It is so sweet to have a baby in the house. I forgot how much they can get into when they first become mobile. So far she has not gone for the fireplace. She did crack one of Summer's Easter eggs (yes, they are still in a basket in my living room) the other day. I heard it was really stinky! Good thing I don't have any enemies. :o I really enjoyed feeding her a jar of baby food this morning, remembering how I used to feed Summer. I can't wait for lunch! LOL She is supposed to go to a birthday party with us today. Summer will hopefully be up for it, but I'm not gonna hold my breath. If she does go, she will have to wear her mask. I don't know how much playing she will do anyway. She had a lot of energy yesterday, but she may have overdone it. Plus, she seems to be nauseous a lot this cycle. :( Can't wait for her counts to go up! Speaking of that, we need to give her a shot. A little behind on this one.....I'll blame it on the late night and everyone but me feeling a little under the weather. Well, may I don't feel so good either....I'm sure the baby will perk me up when she gets up though. What a joy grandchildren are! Just never thought I'd be such a young one.

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.