Monday, August 31, 2009

Wordless Wednesday

I never was good at using no words or following rules. Sorry the pics are a day late. :)

Summer wins at Pretty, Pretty Princess

Special treats from Aunt Leisa

Me and the girls

Taking a spin around the block

Trying out her helmet

Sporting her new winter boots at the playground

New toys from an angel light up the hospital room

Teddy poses

Summer poses

Aunt Leisa strikes a pose

Mommy gets in on the silliness too

(taught to pose by Aunt Leisa when I was around Summer's age)

Feeling good with Barney in her lap

Daddy reads her some books when he visits

Her port site 1 week after antibiotics started

Spot on leg, same day

you can barely see the funkiness of her left thumb,

but of course the cool bandaid is the focus of this pic

never noticed this at the carousel until today

one of her many loves....the carousel!

a little dark, but I had some funky hair going on

the only pic I got at the fountain. oh well

happy with her new fish

big smile for once

matching nails

new shirt from an angel

No doctors today

Summer and I are both grateful not to have to see any doctors or nurses today. She asked me this morning if we were going to have to go to the hospital or clinic. I was happy to tell her no, but we did have to go to the medical mall for a photo shoot. We were in the parking garage (went in a different entrance than for the children's hospital) and she said that it looked kind of like the garage for the hospital. She's no dummy. I'm not exactly sure what they are using the pics for, but it is something for a hospital fundraiser I think. I can't wait to get them myself. Clint and I had to sit in on the first few pics because Summer was in tears not wanting to do it without me. Yep, we are slightly attached at the hip. It has its good and bad moments, but they are all precious to me. We had a hard time getting her to smile bigger than a grin, but I finally thought of the magic word - "package." Her face lit up instantly when I told her I had a package waiting for her. It was a complete bluff, but we were nicely surprised to get home and find a package (most awesome I might add) from Angel Cate sitting at our door step. And, we NEVER get mail on our door step from an angel. It was a miracle for sure! It took a little guessing as to how many packages we would actually have to get enough smiles for the photographer to capture a really good smile, but he did. I don't think she could ever be a professional model, not unless she was the actual one who wanted the pics taken. That doesn't happen much. I can't say I blame her as she has been photographed thousands of times over the past 3 years.

After the pics, we came home and got the bicycles. Then we all rode over to the carousel. We only rode twice today and Summer was happy with that. She rode the brown kitty cat both times. I got to ride a bunny rabbit and a horse (or donkey?). Then Summer and I headed over to the fountains to see how the water felt. Well, it was wet (obviously) and that was not what Summer wanted her clothes to be. :p She did climb on the animals a little though and walk around the fountain. She wandered over to the grass and wanted slide down the small hill, but her new scrubs weren't slippery enough and we didn't have a box.

Yes, I did say new scrubs. When we were at the medical mall today, we went in the scrub shop while Daddy got me a frappuccino. We checked out the kiddie scrubs. One of the ladies working came over and asked what size she was. I told her and she asked Summer which ones she liked. I was thinking to myself, "We aren't really going to buy any. How am I going to get out of here?" I said something about having to ask daddy and the lady said that she was just going to put them in a bag and give them to us. Wow! What a surprise! I must admit I got a little teary eyed and almost cried. Not sure why, but I guess I never expected they would just give them to her. Anyways, Summer has some new Blues Clues scrubs to wear when we go back to the hospital for chemo. She's actually wearing the bottoms now with one of the new shirts her angel sent her.

She has gotten so many neat things from her chemo angels. Lots of jewelry and stickers. She now has a jewelry box full of bracelets and necklaces. I went through it found a few for her to pick from for her picture today. A girl's gotta have options, ya know! She's gotten stuffed animals and My Little Ponies. Art and craft projects. Bubbles, light-up toys, nail polish, tiaras, musical instruments, books......They have done an awesome job spoiling her and lighting up many, many days for her. Today she even got a little fish tank with fish that swim around when you cut it on. When Summer cuts it off, she says they are taking a nap. LOL "Did I have a packadage?" (spelled the way she says it) she will say when I return to the hospital from a break. The anticipation that she might gives her something to look forward amid days that are usually filled with trips to the clinic or hospital. I hope Angel Sarah and Angel Cate realize just how much joy they bring to her. Thank you so much for taking time out of your life to reach out to my little girl!!!! If you are interested in being an angel to someone with cancer, you can click on the link above and go check out their website to sign up.

I feel like we have been so blessed despite it all. As I write about our day, I see how many things do go right in our lives. That little cancer cloud is hovering off in the distance making sure we don't take them all for granted, but appreciate them so much more. I am looking forward to the day when I am not writing about counts or hospital stays, but in the mean time I will preserve all the little things that would've otherwise been forgotten.

P.S. Stay tuned pics tomorrow!

Saturday, August 29, 2009

Feelin' Fine

Summer is at the hospital playing with Memaw right now. My mom has been SOOOO AWESOME over this past year. Well, really the past 31, but who's counting? She makes sure I get a good break everyday at the hospital. My aunt Leisa, her sister, and my dad have also been coming to help out. Summer loves them all and I never worry about leaving her with them because I know she will be spoiled to the max while I am away.

Her ANC was 280 today; white count was 1.0. Her platelets were 24,000 so she got a bag of those today. That is her third platelet transfusion this week (one blood). She may be going home tomorrow if the ANC goes up to 500 and she is able to take the oral antibiotics. They are going to try a capsule instead of liquid antibiotics. I can just empty it into some yogurt and hopefully she will eat it like a good girl. No pouting or whining I hope, but that is wishful thinking for sure. She will have to take it 3 times a day to finish out the 10 day treatment for the staph infection.

Her mouth sores seem to be all gone and she is eating pretty good. Yesterday, she ate 1/2 of a soft taco supreme minus the lettuce. She also has eaten lots of sliced turkey over the past few days. My aunt Sandra brought her some cupcakes today and she ate on one until it broke. Then she was done with it. She's had a PB&J everyday for the past three days (at least half of one anyway). I am so happy to see her eating good and feeling good. She looks good too. She has a little over a week left to "feel good" before the next cycle starts. We will still be staying close to home and away from people. Gotta keep her as healthy as we can. We may have some special outdoor activities though. I see a trip to the lake in our future. I just hope God sees it too.

Friday, August 28, 2009

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 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 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!

Thursday, August 27, 2009

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.


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.

Tuesday, August 25, 2009

Up, up, down, up

That is Summer's fever. Last night it got up to 103.9, auxiliary. Yesterday it was mostly between 101 and 102.8 every time we took it. Once during the night and this morning it got down to 98.?. The Tylenol usually doesn't get it that low in between doses though. Maybe more like 100.?. Anyways, those are just numbers. The fact is she is still fevering. She has been on two antibiotics every 8 hours since yesterday morning - Cefepime & Clindamycin. The Cefe is our "normal" fever antibiotic. She has been mostly sleeping and is currently doing just that. I am laying in bed beside her listening to the Barney movie in the background. I thought she was going to watch it, but I guess she is not feeling good and her body wants to sleep.

She is getting blood and platelets today. I'm not sure what her counts are, but I'm sure they are low since she needs those two things. It should be a pretty busy day at the IV pump for us. Good thing all she has to do is lay here.

When we got to our room yesterday (around 4:45 p.m. We got to clinic at 8:30 a.m.....), there was a Anne Geddes Baby Bunny on her pillow waiting for her. It is so precious. It slept in the bed with us last night. Of course, Summer didn't give up Teddy. He is always her snuggle buddy. She did cuddle the bunny baby for a few minutes in the middle of the night, but then she wanted to cuddle me. Aaawwww. LOVE THOSE MOMENTS! She also rubbed my hand and told me I was "so soft." She told me she loved me. Just out of the blue in the middle of the night after a trip to the potty. I even got a hug and kiss on one of the trips. All of these things unasked for, but SOOOO wanted and needed. They are the ones that mean the most. You know, when you don't have to ask but they are offered freely. Unconditional love. I recall a blog post that I wrote 3 years ago on the same subject. Feel free to take a trip back to when I was a new mom and read it. Wow, how time flies, but that love still remains. Now even stronger due to cancer, a blessing & curse. Wait! Did I just say that? A blessing? Although I would never in a million years want to repeat receiving that awful news (no, not AGAIN), I have realized some things I don't think I would've otherwise. Life is so fragile, so unpredictable. If you aren't doing the things you have always wanted to do in life now, when will you? What are you waiting for? Who knows how many more days any of us have? So now, more than ever, I am LIVING my life. I'm not waiting. I try to experience as many things as I can. This cancer has slowed us down a bit, but hopefully that will only be temporary. We should probably be on mostly "house arrest" for the next few months to keep Summer as safe as possible until her treatments are finished. But, after that, when she is feeling healthy again, we will be off to live the adventure we deserve. After all, life is an adventure and you only live once.

P.S. Her weight was 30.9 lbs. yesterday. Not too bad, but she isn't eating much now. Darn mouth sores!

Monday, August 24, 2009

Cellulitis...and a fever

Summer ran a temperature this weekend. She slept most of the day yesterday, but I wasn't too concerned because she didn't have any complaints other than belly pain. Plus, she was already on an antibiotic, Levoquin. This morning she still had a fever, 101.8, so I was getting her showered so we could come into the clinic. When I took off her shirt, I noticed her port was really red. Panic set it. I thought her port was infected which would mean probably two surgeries. When I got here, they looked at it and determined it was cellulitis which a skin infection. PTL! She also has a spot on her leg where she gets her shots. She is hooked up to antibiotics now and will be admitted to the hospital later today. She also has some mouth sores which just sort of crept up on us. I cried when I saw them. Boo, boo, boo!!! Poor little girl.

Yesterday we only left the house to go see the church which was on fire. I heard from a friend via text message. I had to go see it and it was a sad sight. Such a beautiful church, smoke pouring out the windows and flames shooting out the roof. We didn't even get to go yesterday and now we won't get another chance. I guess everything happens for a reason.

Please pray that Summer will recover quickly from the infection and not be in too much pain. She is such a strong girl, but she does not deserve to have to prove it.

Friday, August 21, 2009

Short stay

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

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

Wednesday, August 19, 2009

Blood today

Summer got blood today. Her platelets are still above 70,000 so she didn't need more of those. She hasn't ran a fever since yesterday evening so I am hoping we will get to go home tomorrow. Of course, I'm not getting my hopes set too high.

Tre came and spent most of the day with her. They had a good time watching a movie and coloring. My mom got off work a little early and came by to spend some time with her too. I am so lucky to have those two in my life and so is Summer.

It has been a rather uneventful day which is nice. After Mom & Tre left, Summer and I watched Barney's "Night Before Christmas" video that I brought from home. We had a slight dispute over whether or not Baby Bop and BJ are dinosaurs so we called her cousin Leah to see what she thought. I think Summer was really just being silly by not believing it, but whatever floats her boat is fine with me. She really is a silly little girl at times. I guess she gets it from me (or my mom). Clint is definitely more serious than us. She is currently sitting on the bed coloring with a blanket over her head, talking to the crayons. LOL

Her belly has been hurting her today which is not unusual. She hasn't eaten too much today- french fries, nutty bars and chicken noodle soup. Oh, and two bites of cheese stick. It's better than nothing though so I'm not complaining. Wish I could lose my appetite for a few days....then again if it takes cancer for that to happen, I'd rather not.

Tuesday, August 18, 2009

Six for Six

We are back in the hospital with a fever. No surprise there, but of course a little disappointment still accompanies this visit. I was hoping that Summer would not get a fever EVERY single cycle, but the odds are not in our favor for that to happen.

I forgot to mention yesterday that Summer weighed 31.4 lbs. That is a pretty good number for her. Hopefully that is one thing she will hold onto this cycle. She has been eating pretty good still, although just a few bites at a time. Today she ate 1/2 a banana, a few bites of a rice krispy treat, two finger swipes of chocolate icing, a few m&ms, 2/3 of a hot dog, 2 1/2 cheese sticks, 1/2 a peach, chicken noodle soup broth, a few sips of hot chocolate, 2/3 a carton of OJ, and peanut butter. Not really a whole lot, but a wide variety of things. I am glad she still has an appetite even though she hasn't taken her Zophran in a few days. The last time we got it filled (at a different pharmacy) she did not like the taste it had (maybe fruity) so it is not easy to get her to take. She always tells me "it will make me throw up every single one." I've learned that doesn't really mean she will throw up, but that she does not want to take it because she doesn't like the way it tastes. Granted, it might make her throw up on occasion, if she so wills it to. The mind is a very powerful thing over the way you feel. If you believe something will happen enough, it just might. Her other oral meds also often get the same response from her. Did I mention it is accompanied by an adorable whine??? LOL

She is already in bed and is ready for me to join her. Problem is, I'm not sleepy. We had a nap this afternoon together after we got our room (around 2:00). It is a small room, but at this point any room is not so great if it means we are here. The big rooms are definitely a plus, especially when she is on chemo, but either way we are not at home. That wonderful place where I don't have to put on my shoes every time I leave the room to fetch something for her (or myself).

We didn't really bring any toys which she has already asked for. We were in the "cool car" so there wasn't much room for more than our suitcase, the backpack, computer bag and stroller in the trunk. We are also missing our food basket which she seems to be missing more than me. Funny thing is she rarely eats anything out of it. I guess it is just the comfort of it being here and possibly holding something that sounds good to her. Why do we always want the things we can't / don't have the most? Oh well, I am just thankful for all that I do have. Despite everything we have gone through, I still feel that I have an extremely blessed life.

Monday, August 17, 2009

A long clinic day

Summer and I got home from the clinic a little while ago. Her appointment was at 9:00 a.m. and we didn't leave until around 3:00 p.m. Long day in the "sick" waiting room. She wasn't really sick, but I was trying to keep her away from all the other kids/families so we don't catch a fever. And boy are we close! 99.4 when we left the clinic. Her white count was .4 which means her ANC is really, really low. Her hemoglobin was good, above 9, and her platelets were very low at only 9,000. So, we had to stay for platelets which didn't show up until around 1:30 or 2:00 p.m. We knew at 10:20 a.m. that she was getting them. It really sucks that it takes 3 + hours to get the platelets from wherever they are to the clinic. Lots of time to catch germs which could be walking by. The good thing is it only takes about half an hour to get them in her. Then another twenty chasing the nurse down....CLINIC DAYS ARE NO FUN. Not for this mommy. We did make a necklace that says I LUV TDDY. They were out of E's. :) I thought we were going to do a second one, but we didn't. Mostly we watched PBS, namely Caillou & Barney. I really like that channel because it is somewhat educational while also entertaining for her. I don't ever worry she is going to pick up something bad off that channel. Ex. Family Guy, Simpsons.... While as an adult I might enjoy the occasional episode, I do not like for Summer to watch them. I would rather delay her exposure to some things as long as possible. Kids grow up too fast already these days. And, her even faster due to this cancer.

My baby is gone, well in the physical sense I guess. Some days, like today, she is still pretty much a baby. She's been on my hip or lap all day. I'm there helping her on and off the toilet, wiping her clean. She's asked for food countless times only to eat a bite or two...I seem to be her food slave. Thank God she is feeding herself right now. I just made her peanut butter cookies for the second time in two days. Oh yeah, and she is SUPER whiny. When she is not feeling good, whining is second nature. She really does seem emotional though and her eyes seem to tear up just hearing the tone of her voice. It is frustrating, but I know she feels like crap so I can't really blame her. I just try to figure out what she wants before she does and avoid some of the sudden emotional breakdowns. I also give her lots of hugs and kisses to let her know I care. I think we have a nap date in a few minutes too. She is watching what she calls "Baby Bop's School," but is actually called "Barney's ABC's and 123's." Whatever. We both know what she is talking about. I'm going to spend the rest of my precious alone time sitting here at the computer. Wait, she wants more food. Nevermind. Mashed potatoes & corn, here I come.

Please pray that a fever does not visit this house this week. We don't want any!

Saturday, August 15, 2009

Enjoying life & the great outdoors

We have been enjoying life outside of the hospital, trying to take it easy and not get a fever. :) The past few days we have been lots of outdoor places: tricycle rides around the block, bike rides, Coolidge Park carousel, playground, local zoo carousel, Nightfall. We stopped for ice cream yesterday after the playground. Summer got strawberry with sprinkles, but only ate a little. The rest is in the freezer where it will probably remain until I cave and eat it. Wish she liked cake batter ice cream. :) She woke up this morning a little after 7 wanting to go get ice cream again. Today she wants blue ice cream. I think it is cotton candy flavored which is not my favorite, but I guess it isn't for me. It's for my little princess.

She has been dressing herself this past few weeks. She likes to pick out her clothes and shoes. I usually let her, even if it is a little mismatched. She still looks adorable sporting her own style.

Today during lunch she told me "Mom, you're the best cooker in the whole wide world!" I live for those moments. She enjoyed the spaghetti, especially the fact that I did not cut up the noodles. She likes them long. For breakfast she had some grilled chicken with BBQ sauce. She has also had a few baked potatoes with sour cream since we have been home from the hospital. She thought she wanted Garlic Chicken pasta a few times, but the flavor is not in her palette right now. Hot dogs are still a go at times. She hasn't been eating much, but she is trying and has not been throwing up so that is always a plus. She has been drinking pretty good so I am not worried about her intake at this point in time.

She just came and invited her Daddy to a tea party. He said "ok", but I have a feeling he wasn't really thinking when he said that. LOL

Summer's favorite movie right now is Care Bears II. It is cute and I can remember watching it with my sister when I was a kid / teenager (all those years are kind of running together at this point). She has watched a few episodes of the Big Comfy Couch on YouTube this week which was a nice treat for her. She has really missed it since they took it off PBS.

She has been listening to her Ipod quite a bit lately too. I put some new music on it while we were in the hospital. Her favorite song is "The Climb" by Miley Cyrus with "Rockin' Robin" being her 2nd favorite. She looks so cute with the Ipod in hand, headphones on, jamming to her favorite songs. I can't wait until she learns all the words to "The Climb." I can see us singing it together at karaoke some day.

She is growing up on me. These past few months she has really aged, more than I would've wished. But, she is growing up into a wonderful person - loving, polite, and kind. I am trying to instill give/take values into her too. You can't always get your way, sometimes you have to let others have a turn. I know she still thinks it is better to receive than give at this point, but hopefully that won't always be true.

I'll finish up with a cute thing she said the other day when we saw a train. I said, "I wonder what is in the cars." She replies, "Maybe toys."

Tuesday, August 11, 2009

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!!!

Monday, August 10, 2009

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!

Sunday, August 9, 2009

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.

Saturday, August 8, 2009

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!

Friday, August 7, 2009

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.