Friday, June 26, 2009

Homeward Bound

I hope! Summer is getting platelets as I type. They were only 19,000 this morning so I guess I'm glad we didn't go home yesterday because then she wouldn't be getting these platelets she needs. Her white blood count is up to .8. Still pretty low, but it is rising. Maybe we will be off the shots come Monday. The Dr. gave us the clear to book a quick trip to Florida so I did that yesterday. Now we just need the ANC to get up to a safe level and we will be in good shape. I am sure we will go to the clinic first of next week for another check so we can be sure she doesn't need any platelets or blood before we leave. Woo-hoo! I can't believe we are actually getting to go. I am probably more excited than Summer, but I'm sure she will love it. We are staying at Splash which has an indoor water park for kids so that is perfect since chemo patients should not be sun worshippers. Does anyone have a fast forward button because I am ready to leave? I'm sure it will be here before we know it anyway. I hope Summer is feeling more like her playful self by then. After the chemo is out of her system for a few weeks, she is usually back to normal. I just love that word. Normal. LOL Here are some pics from the past month. I hope you will enjoy them.

Barney being artistic in the clinic this week

Playing dress up

Acting silly while helping Mommy make popcorn

I just love these sunglasses!
They will have to be packed for the beach!!!

Summer enjoyed the fair at the mall...

....especially the swings.

But, her favorite was something similar to the tilt a whirl. She loved going around and around and around.

Making thank you cards for her angels.

One of my old Jazzercise friends made her a cupcake hat.

Wearing her Curious George mask we made at the Discovery Museum.

Playing with her cousins is always fun for her!

Wednesday, June 24, 2009

Sick and tired

That's how Summer and I both feel, but in different ways. Today and yesterday, she has mostly been just laying around with a few spurts of playing mixed in. It is so hard to see her like this. She looks sad, sickly. And, yet I love her all the more. Such a sweet little girl having to go through such a crappy thing like cancer. So many kids are, but she is mine. And, she is with me everyday and it is hard.

I love to see a smile on her face. Today, two puppies came by just after she had laid down for a nap. I told the lady to bring them in and woke her up. One of the dogs was actually small enough to get in bed with her and it did. It licked her and she petted it. And, SHE SMILED. I was so glad I woke her up to see them because she needs smiles these days.

Then a little later her cousins showed up. More smiles. Such priceless moments.

Then she got tired and wanted to just be cuddled. More precious moments.

I am so lucky to have my little girl even though we are both sick and tired of all this mess! We will get through this and have lots of happy days again. For now we are just leaning on each other, family, friends, and mostly Him.

P.S. May have a fever now. The first since last night. So, no sign of going home tomorrow.

Tuesday, June 23, 2009

Results and a Fever

The CT scan came back negative - NO SIGN OF DISEASE! PRAISE THE LORD!!!

So, we keep on keeping on with her scheduled treatments. Only 4 cycles to go....

Summer was running a fever this morning when she came to my bed. I didn't take it right away because it was 5:00 a.m. and I wanted some more sleep. I got up around 7:00 and took it. It was only 98.6 F under her arm. That didn't seem right so I retook it in her mouth - 100.7. Then I changed thermometers and it was 101.1 orally and 99.1 under her arm. I went ahead and made the call since I knew she had a fever. We got the wrong people on the phone and they tried to tell me to take her to the ER. I told her there was no way I was taking my kid with no immunity to the emergency room which is full of germs. She called me back realizing she had gotten our call in error and was paging the doctor (I guess oncology kids should be directed to a different answering service than "normal" kids). We came into the clinic rather than the hospital which is where we still are. They may not admit her. Right now they are just observing to see if her fever comes up since her Tylenol is wearing off. She might get an IV antibiotic here and then go home and come back for another tomorrow. That is fine with me because the last place I wanna go is the hospital. We have only been out about 48 hours now so I'm not missing it yet. LOL We will also be returning there next week for more chemo. So, HOME sounds like the perfect place to me right now. Just waiting to see if that is where we are actually headed.....

Summer wore her Barney costume today. She wanted to wear her Barney slippers and I made the mistake of telling her she would have to wear her costume too if she wanted to wear them. Of course what 3 year old is going to say no to that? Definitely not mine. :) Barney and I are watching Super Why now in the "sick" waiting room where we are avoiding the germs. It felt weird coming in this room since we have never been here before and it is kind of scary to be in the sick waiting room when she has no immunity. But, I was told it is clean in here. ;p I still wish I had my Lysol with me, but it is in the car in our suitcase.

Today we are 2 & 6....eyelashes that is. I really can't believe they are still hanging on. She also still has hair around her hairline....fine blonde hairs. For the most part, her head is smooth as a baby's without diaper rash. :) Clint and I both love to rub it. Sometimes he teases Summer that he wants a lollipop....her head that is. I haven't seen him lick it in a while though.

Summer and I had a good time singing a little bit ago. I started off singing her "You Are So Beautiful" and then "You Are My Sunshine." Then she wanted to sing "Because He Lives." We sang it over and over and over. I'm not sure why, but she really likes that song and so do I. She is into music like me, but I just hope she gets a better singing voice than I have. If not, she will just have to stick to singing in the car like I do. She loves to dance to music too....just like me. The other day she kept telling me to cut the radio up and she was dancing in her carseat. It was unusual because we were listening to "my" music. Usually she wants "her" music on when we are in the car. But, she was happy with the beat of the music on the radio so we stuck with that. I hope she gets my dancing ability as opposed to her Daddys. He's about as smooth as least when it comes to moving those hips to a beat. He did dance with Summer a little yesterday, but it made him dizzy. At least he tried. I know they both enjoyed it, as did I enjoy seeing the smiles on their faces!!


The nurse just came and took her temp. - 101 F. So, we are being admitted....

Monday, June 22, 2009

No results yet

We will not get the results from the scan until tomorrow afternoon. We are supposed to call sometime to get them. So when is it actually afternoon anyways? 12:01? :p

Looks like we are not gonna make the beach either. She goes back on Thursday for counts. The doctor said we could delay chemo a few days, but we will just wait until a better window opens up. We do have several other things we can do here this weekend so no big deal. (still trying to convince myself of that one :) )

Other than that, we are down to 3 & 7 eyelashes. She is still eating pretty good. Just trying to find something to do that is not too hot and not too germy. She still has no white counts. We are still giving the shots until they go up. I wish I could say that was getting easier, but it is not. Meds are taken pretty well though....with only a few "nows" in the mix. Lucky Summer only has to take them once a day.

I am hoping to take Summer to a friends to see her kittens sometime this week. There is also a farm which has been offered up for us to visit so we may do that too. There is also the park. I wonder if it is okay to take her into public water playground type places with her counts being so low. They probably use a lot of bleach in those things so maybe the germs are all dead. Man, I would've never imagined myself having to think about this type of thing on a constant basis. But, I have to. Better to be safe than sorry and end up back in the hospital!

Will try to post results as soon as I get them tomorrow.

Sunday, June 21, 2009

Free at last!

Summer was released from the hospital before noon today! That was awesome because we got to go visit with family at my aunt's pool. It was nice. Summer missed a family cookout yesterday. My mom stayed at the hospital with her. Her platelets were low yesterday morning so they gave her some of those while I was gone. Today, all was good though. Her ANC was ZERO so that is not great, but that is normal. I am hoping it starts going up quickly or else our trip to the beach is nothing but a pipe dream.

Summer made her daddy a card this morning before he got to the hospital. She wanted it to be a heart so I drew one on the yellow construction paper she picked out. She cut it out. Then she decorated it with stickers and told me what to write. It turned out really cute and I know her daddy was surprised when he saw it.

She has been eating like a horse today. I can't even remember all she has eaten, but here is a partial list: toast with strawberry jam, chocolate cake, chocolate chip cookie, 5 vanilla wafers, 1/2 can black olives, half a hot dog, cantaloupe, grapes, spaghetti, chicken noodle broth, lemon yogurt. Ok, I'm stopping there. As you can see, she definitely has her appetite back.

I am hoping for no more fever. She has a CT scan in the morning then an appointment in the clinic for a count check. I wish we could wait until Tuesday for the counts because I am really wanting to make a quick trip to the beach this week. I am afraid they won't be up enough tomorrow, but maybe they would by Tuesday. If we go tomorrow, her next appt. will be Thursday for another count check. By then it is really too late for the beach. I may just wait until Tuesday, but not sure yet. We'll see how the scan goes tomorrow. I am hoping everything is clear because otherwise that means the chemo is not working and that will change her whole treatment plan. I'm sure it will be clear though because I BELIEVE IT!!! She is beating this ugly disease. I just know it!

Friday, June 19, 2009

In our room....

at the hospital. Yep, yesterday she started running her usual fever since her counts are bottomed out (101.5 at its highest). So last night around 9:30 we arrived at our home away from home. They started her on an antibiotic a few hours later and then gave her blood since her hemoglobin was below 7.

She is doing pretty good today. My cousin is in from Iowa, and she came by to visit. Summer mentioned that she wanted some Fudge Rounds and Krystals so my cousin went out to fetch them for her. It was nice to see her and her hubby. We do love visitors when we are here!!!

Hopefully, we will be out Sunday or Monday. Then we are going to try to head to the beach before her next chemo cycle. WOO-HOO!!!!! Summer has actually been asking to go to the beach so I am sure there is sand castle building in our future. We'll just have to make sure to do it early in the morning because she is not one to stay out in the hot weather. She's not a sun lover like her mommy......yet. :)

Wednesday, June 17, 2009

Awake and eating

Summer seems to snapped out of her sleepy land. She is still not as active as usual, but she is on her way I hope. Yesterday, at her appointment, her ANC was 100....almost bottomed out. Her platelets were still good at 210,000 and her hemoglobin was above 9 which is good too. Her white count was .3 (I think) which is normal when her counts drop.

She is eating spaghetti and chicken noodle broth today. She also had a powdered doughnut and half of a mini ice cream sandwich. Last night at my mom's house she ate a hot dog weenie. So, things are looking better in the eating department. As a matter of fact, she just told me she was hungry again. :) The funny thing is she only eats a little of whatever and then says she is full or her belly hurts. Oh well, I will take whatever I can get into her. She had lost 3 pounds as of yesterday, down to 29.2.

She is such a lovely girl. Well mannered and loving. She always says things like, "Mommy, I love you so much." Plus she is just a Mommy's girl right now and I am loving that.

She is beckoning me to help her pee and then fix her something to eat. I do love babying my little girl......

Monday, June 15, 2009

Light at the end of the day

Summer has finally attempted to eat. This evening she had 25 spoons of chicken noodle soup broth. She also had a few bites of popcorn. Yay! She has drank tea and water today so I am thinking she is okay in terms of hydration. NO vomiting since 2:30 a.m. She has had 3 doses of Benadryl today so maybe that is helping her to not be so nauseated. She slept a lot today though so maybe it just helped to sedate her. Still hasn't taken her belly or allergy meds. She wants me to mix them with water, but I know that would taste terrible so I'm not even going there.

She complained of a headache a little bit ago. She did yesterday too. She says it is in the back of her head, at the base. Guess I'll mention that to the doctor tomorrow although it is probably just a side effect of the chemo. I found out that Ifosphamide is derived from mustard gas. Scary, huh!?! It was in this video which I ran across while youtubing with Summer: Chemotherapy Video. Summer is on all three of these drugs not in the same combination as the patient in the video, but still the video says a lot, painting a somewhat scary portrait of chemotherapy. Unfortunately, it is scary.

Not to leave on a bad note, here is a video that reminds me that miracles are also brings tears to my eyes, but I have been told it is okay to cry. McKayla Keelan has been cancer free for 1 year - same cancer as Summer, but stage 4 instead of 2. Anyways, thought I would leave with a brighter video than I started with. Through God all things are possible!!!

Logic Works

Summer is still not feeling good. Last night she emptied her stomach (those words just makes me smile) twice. Once around 1:45 a.m. and again around 2:30. Summer moved to our bed after the first time and luckily made it out of the bed before the second time. We moved to the couch at some point after that where we slept until about 8:00 a.m. Surprisingly, I slept pretty good snuggled up next to her unable to toss. I did move to the love seat once it was daylight so I could give my other side its turn. LOL

She is still laying on the couch. She has drank a glass of green tea (with fiber & probiotics) so far today. Yesterday all she had was two glasses of green tea and a cup or so of ice. I told her she needed to take a Benadryl, but she refused. I explained to her that it would help her to not feel like she was going to throw up (I hope). She still refused saying she didn't like it used to be her favorite. But, when you are nauseous from chemo, your favorites are sometimes your worst enemies. :( Anyways, she finally sat up about an hour after I offered it and said I'll take it. She still hasn't taken her belly or allergy meds. But, I know if I force them, she will probably just throw up which is so NOT what we need right now.

The shots are back on. Today's shot seemed to take forever. Clint administered it while I held Summer who wasn't "ready yet." This is only #2 of this cycle. Last time she had these meds, she was on the shots for 16 days. It is shorter for the odd # cycles. I hope her counts start going up soon. She already looks like they are really low. She is kind of a pale yellow color with dark circles. It sounds worse than it looks, but when she is just laying there, sometimes I just get lost in her face. That is why I also know that she has 3 eyelashes on the right and 8 on the left. They are hanging on for dear life it seems too.

She is half way through her chemo treatments with only 4 cycles remaining. That is assuming it does not come back. I read that her type of cancer (rhabdoid) usually comes back within the first two years if it is going to. I really don't want to start thinking about that, but I can't help it at times. I think she will be having a scan soon, but not sure exactly when that is. I haven't actually heard that she is getting scans from a doctor, but according to her road map she is due a CT after the 4th cycle of chemo. It is crazy that it has been just over three months since we started this whole saga. Now we are just living life day to day, never knowing if she will be sick or well. It's a good thing no one ever told me life was fair....I'd be really mad at them right now.

Please pray that she will get her appetite back. I am scared we will be going inpatient soon if she does not start taking more in her mouth than she loses from it. We go back to clinic tomorrow for counts which I'm pretty sure will be none. They will also see if she needs any blood or platelets. Her counts aren't supposed to bottom out until mid to late week, but I have a feeling they are pretty close to there now.

Sunday, June 14, 2009

Not going....

to the party. Or anywhere else for a while. Summer is content to stay on the couch with Teddy for now.

I'm still dreading the shot....she doesn't even realize it is coming.


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.

Thursday, June 11, 2009

In a deep sleep

They are keeping Summer pretty sedated for this chemo treatment. She was up for about 4 hours this morning, but has been sleeping pretty much the rest of the day. It is better this way. She is not awake and vomiting. She is resting peacefully it seems. I haven't noticed much seizing or anything this time. A little twitching in the hands, but some people do twitch a little in their sleep. I am so thankful they have been able to keep things under control and keep her moderately comfortable (at least she isn't awake to complain). :)

This morning the first thing she wanted to do was watch videos on Yesterday we watched some and I guess she really enjoyed it because as soon as the she was up, she was asking do it it again. Her favorite video is a Johnny Appleseed video which she played over and over and over. I know the song by heart now. LOL She is pretty good at choosing videos and playing them all by herself on my laptop. I just have to make sure she doesn't get an inappropriate one. She found a few Mickey Mouse videos on there that she liked too.

She ate a decent breakfast: frosted mini-wheats, ravioli, & an ice cream sandwich. I doubt she eat anything else today. She'll probably be asleep for most of the rest of it anyway. Especially if she wakes up and starts throwing up. Then they will give her a dose of Ativan and she will be back in a dream world. I should probably sleep too, but I am too excited about my night off. My mom is planning on staying tonight which is a first. Of course Summer is excited about the sleepover, but I bet I am going to be up here bright and early tomorrow. As much as I love a break, I hate to leave my baby when she is sick. At least she will be in good hands.

Wednesday, June 10, 2009

Knocked out

The day was pretty good up until about an hour and a half ago. Summer had been asleep pretty much since 11:30 a.m. Around 5:30, she started vomiting. She has done it twice more since then. :( So, they gave her Ativan. She is already on Benadryl and Zophran. Today, she got these two chemo drugs: Iphosmafide and Etopside. She gets those two Thursday and Friday too. They are the evil chemo drugs. Well, the evilest of the evil that she gets.

She had a visit from two of her friends today, Willow and Mason. They came this morning which was best because she was not really feeling the chemo at that time. I think she enjoyed the visit, as did I. My best friend from high school is Willow's mom and it was nice to see her too (along with her sister, Mason's mom). The last time we saw all of them was at Summer's birthday party. Hopefully, Summer will be up for a birthday party on Sunday for another one of her friends. She has already missed one of her friend's parties due to hospitalization.

I guess I'm gonna spend the evening playing Spider Solitaire and watching TV. Looks like my angel is gonna be zonked all night. I'm sure we will be up every few hours tonight to go pee. Last night the nurse helped me remember to make sure she went every few hours. It is a good thing too because I was too tired to get myself up. I hope the rest of the evening is uneventful, but just in case I've got the puke bags ready.

Here is a link to a video from the Princess Alexa Foundation. Summer is the clown about two and a half minutes into the video. She and I both enjoyed watching it. Of course, it brought tears to my eyes......

Tuesday, June 9, 2009

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 my daughter.

Monday, June 8, 2009

Back in the slammer.... ;)

Summer made counts today for admission. Her platelets were 111,000 and her automated ANC was 900 so that is a green light for chemo cycle 4. I'm glad because that means we are that much closer to getting these cycles knocked out. Plus, she should be getting out on Saturday morning if everything goes as it should. Knock on wood. :) That means she, too, will get to enjoy the fireworks this weekend. Her friend Willow is supposed to come up and watch them too. That will be nice because they haven't seen each other since Summer's birthday.

Summer had a great weekend. She rode on the 4 wheeler with my mom. She is usually scared of it, but this weekend she loved it. She also got to spend the night with her cousins, but not enough nights for her. When I went to pick her up today, she wanted to stay another night. Unfortunately, for her, we had to come here (the clinic) to be admitted.

She has been eating like a horse. She is almost back up to 33 pounds which is what she weighed at the beginning of this saga. The residents said they still saw a few sores in her mouth today, but they look to be in the healing stage. She hasn't been complaining about them which means they must not be hurting very bad. We stopped using the mouthwash last Friday. They didn't tell us to, but I figure if she is not hurting that is okay. The stuff is not good for her teeth anyway. I read the label and it said it may cause them to discolor so when it isn't absolutely necessary, I think we will skip it.

When we got to the clinic today, I got her to sit in my lap and rocked her to sleep. I stared at her beautiful face as she slept. Then I counted her eyelashes. She has 10 on each side. I never imagined I would actually be able to count her eyelashes. She had long, beautiful thick eyelashes and now they are almost all gone. Her eyebrows are thinning out too, as are her nose hairs. I don't even know if she has any of those left. Her nose runs down her upper lip. Not a snotty run, but just the moisture from her nose that has nothing to cling to anymore. It is so hard to see the changes that have occured over the past few months, but she is still a beautiful little girl. That will never change.

Thursday, June 4, 2009

Freedom is sweet!

Summer has enjoyed being out of the hospital as much as I have. This morning she asked if we had to go to the hospital and when I told her no, she was full of joy. The smile on her face was so awesome. Sometimes it is hard to get one. Chemo literally sucks the life out of her and she is constantly recovering from it. Clint mentioned the other day how noone told us about all the in between chemo hospital visits for fevers. Every cycle when her counts are bottoming out, she runs a fever and we are automatically admitted to the hospital. Nonetheless, we are trekking through this year trying to make the best of what we can.

Summer loved Chuck E Cheese. She is still at the age where you can go and play a few games, get a few tickets, get your prize and leave. She doesn't need to eat there or use all the tokens before we leave. We probably still have more than half of the tokens we got left. We almost went to a fair afterwards which was in the mall parking lot. However, it did not open for another half an hour so we left. I'm glad too because it was scorching hot outside. I am hoping to get to take her tomorrow evening for a little bit if she is up to it. Don't worry, I will be taking clorox wipes to help combat some of the germs on the ride. :) Even though her immunity is up, she can still get sick like anyone else.

Yesterday, her cousins came up for a while to play. We walked down to the water by the aquarium and let the kids play. When I first told Summer that we were going there, she did not want to go because she did not want to get the bandaid on her port wet. So, that prompted lots of whining. She didn't want to go, blah, blah, blah, whine, whine, whine. Poor girl does not like to get her bandaids taken off because it hurts her tender skin. :( By the time her cousins got here, she had calmed down, but still didn't want to go. When she realized the water was only going to be knee deep and she wouldn't have to get the bandaid wet, she was fine. The funny thing is she likes to wear bandaids on her arms and legs. She calls them "stickers." :) But, you put one on that port and it's like you are torturing her. LOL

We are going to Playgym today. It has been months since we went and since her counts are up and it is not cold and flu season, I think it will be okay for her to go this once. There are only a few "good" days a month that we can actually have some sort of freedom. Then we are going to the Aquarium to watch the penguins swim and hopefully get a butterfly to land on us. That rarely happens to us though, but today is a new day.

Summer got a toy penguin that swims from one of her chemo angels. So far we have just used it in the bathtub, but we may take it to the pool one day. Her angels have been so good to her. She loves it when she sees one of their packages, clearly marked "Angel Mail" on the outside. She has gotten all kinds of neat treats from them: bubbles, a tiny barking puppy, My Little Ponies, books, stickers, a Barney toothbrush......I could go on, but I won't. :)

She has been eating more, but still not a lot. One of our neighbors brought her some cookies last night. They were individually wrapped and decorated and VERY yummy. The best part is Summer likes to share! She will start eating a cookie and then let me finish it. Of course, she very rarely finishes all of everything she has in front of her these days.

My goal is to maximize our fun time for the next few days. She could be going back in for more chemo on Monday. Depends on her platelets. I kind of hope she does get to go in because then we should be out in time for the fireworks. :) Of course, I probably just jinxed myself and the fireworks will not be part of my future. I sure hope not. I just have to BELIEVE. Still working on that one....although the world is looking pretty bright these days. Despite the rain, today is going to be sunshiny for me!!!!!

Tuesday, June 2, 2009

Going home...and to Chuck E Cheese!

This morning the resident gave us great news. Summer's ANC was 2,400 so that means no more shots and her immunity is up! WOOOOOOO-HOOOOOOO!!!!!!!!! They didn't know that she is supposed to be getting her last Vincristine dose for this cycle today, but I pulled out my road map and showed them. They were also going to give her a shot, but I remembered that she doesn't have to have them once her ANC is over 2,000. Good thing I pay attention to the paperwork they gave me in the beginning otherwise we would be waiting all day for the chemo that the Drs. didn't realize it was time for. I think we will be in again next week for Cycle 4 of chemo. As long as we are out by next Saturday, I will be happy. That is the day of the best fireworks of the year in our town and we have front row seats (our balcony overlooks the river where they shoot them). I am really looking forward to them because they are awesome!!!

Last night she asked me if we could go to Chuck E Cheese when she feels better. Lucky girl gets her wish today. Not sure exactly when we will be getting out, but hopefully not too much later than noon. Then we will go home to rest a bit and get her a bath. After Daddy gets back from his appointment, we will probably head to Chuck E Cheese. She thinks Chuck E is a bear, but I have told her it a mouse. :) She asked me why he doesn't talk even though he is on stage. LOL It is funny the things she realizes. She is very perceptive.

Summer wanted some chicken noodle soup and Sprite for breakfast. Actually, she just wanted to drink the broth out of the soup, but whatever works for her is fine with me. Her mouth is really hurting I think. She has swished twice today already, and I am going to get her to do it one more time before we leave. Well, she is ready to head back to the room. I am so excited about going home, but she is already talking about how she doesn't like to get her port deaccessed......and she needs to pee! Gotta go!

Monday, June 1, 2009

X-ray says: There is no poop!

I am not sure how it happened, but Friday she was full it and today she is not. Maybe God made the poop magically disappear. Too bad he didn't do the same for the belly pain. The doctor says that maybe she is just saying her belly hurts for attention. I don't know about that, but it could be that she is saying it out of habit. I do know that she won't eat and she says it is because her belly hurts. I told the doctor this has been going on for weeks, maybe even months. So, maybe he will do some further investigation. I'm not going to hold my breath though.

We got some other good news. We may be going home tomorrow. Her white blood counts are starting to rise. Even though she was running a fever early this morning, 100.7, we may still get to go if it stays low and does not shoot up again. Her hemoglobin was 7.3 today so she is getting blood soon. I hope we do not have to stay in the room for that because Ms. Ashley is trying to get all the two & three year old patients together so we can meet each other. There is another new two year old patient this week. I have already met the one from last week, but Summer has not.

She is doing a little better today. Still refusing food, but I think the news of going home has lifted both of our spirits, even though she usually says she doesn't want to go home when they say we can. I'm sure she'll be saying that tomorrow when it comes time to deaccess her port. LOL

We got a new camera over the weekend and Summer has been snapping pics like crazy. She has taken almost 200 pics of random things in the room. I am sure I will delete 90% of them, but I'm sure she won't care as long as she gets to keep using the camera. It is just the right size for her which is not why we bought it, but it was nice it turned out that way. Hopefully, it will last us a while and serve the whole family well. I really love that it is so small and portable. No more lugging the big camera to the park! I'm hoping we will get to go there sometime this week.

She doesn't like the flash so I had her close her eyes this morning for this shot.
Daddy takes a little nap, but Summer wakes him by tickling his feet. :)
One of the rare occasions she has eaten during our stay at the hospital.Paw-Paw smiles big for the camera, sporting his new mustache.Daddy says "peace" before he leaves
So far I am not impressed with the quality of the pics, but the lighting in the room is pretty bad and most times the lights are off. I hope they turn out better when we get out of here. We really didn't test the cameras at the store, we just bought the one the guy recommended which was about the same price as the others (Nikon CoolPix S220). You live and learn.....well, hopefully you learn. Maybe you just keep living in ignorance. :p