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!

Feelin' Fine

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

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

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

Out come the blue gowns

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

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


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

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.

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!

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.