Tuesday, March 31, 2009

100.4 - the magic number

Well, I took Summer's temperature a few minutes ago and guess what it was? Yep, you got it. 100.4!!! So, I've got a call into the doctor to see if we need to head back to the hospital. I am hoping not, but I won't be surprised if they want us back in. We have to be there at the crack of dawn tomorrow morning anyway. Anyways, say some prayers that her fever is nothing serious. It wasn't the last time. They just take every precaution when counts are low and go ahead and start kids on meds just in case there is something festering inside them. I don't think her temperature was over 99.5 since Sunday. And believe me, they take it A LOT!!! Here comes my princess now. Mommy is never too far out of her sight. Not if she has anything to do with it anyway. I gotta go. She is trying to take over the computer.

A bright ending to a rainy day

That's what I'm hoping for. Summer does not feel well. She doesn't want to talk. It seems like she is retreating and I don't know what to do. I am trying to just take a step back and "chill." So far, I'm probably not doing a very good job. We are both having a hard time dealing with this.

She feels sick. Her tummy hurts. Her mouth hurts. Her lips looked chapped. She gets nauseous when she looks at food. She won't eat. She won't drink. She has this congested sounding cough (since we got home a couple hours ago). Her hair is gone and what a mess that was. I CANNOT imagine what is going through her mind right now. Add to that, she won't talk. Not much anyway.

Clint brought Summer some dried strawberries from his cereal this morning and she wouldn't eat them. She tried, but when it hit her lips, she put it back in the bag. She also tried them again when we got home, but ended up telling me she would save them for later. Later just never seems to come. She has been saying that about everything. :( I have been trying to coax her into eating a cracker thinking that it won't make her nauseous. But, so far she hasn't tried one. She doesn't know that mommy knows best. LOL I made us a plate of saltine crackers, Ritz crackers, and Goldfish - some with peanut butter, some without. She looked at the plate a long time. I could see her holding back the urge to gag, trying to find something she could put in her mouth. Then she took her finger and ran it across the edge of a peanut butter cracker for a little taste. She thought about it for a minute and then picked the cracker up trying to scoop the peanut butter off with her finger. She seemed to like it, but did not want the spoonful of peanut butter I offered to go get her. She got as much off she could without eating any cracker. Then she came and asked me to put some on a plate for her. I put about a tablespoon and she cleaned most of it up with her finger. I got the spoon! :) So, that is good news. Something she likes. Now I just need to find something she will drink.

I shaved the rest of her hair of before we left the hospital. Well, as much as I could with a pair of barely charged clippers. It was falling out in fistfulls and was really driving Summer crazy. She kept getting it in her mouth last night and would get so frustrated trying to pick it out. So, I decided to leave it all at the hospital. And that is what we did, a bed / floor full of hair!!! I am not pressing her to wear a hat because the normal two-year old response (or maybe this is a any age child response) is "No" to things they think you are trying to get them to do. I think she is so adorable even now with the uneven stubble that covers her head. Maybe even more so. Those big brown eyes just melt my heart, but I just hope they don't harden with all this mess we are going through. I don't want to lose my sweet, innocent little girl. But, in life we don't get to choose everything. We have to play with the hand we are dealt. Even crappy hands. No folding allowed.

She is napping. I was in there with her, but had a phone call so I came to finish this after I was done with it. I am going to try to get back in there before she wakes up. I am sure she knows I am not there though. I am enjoying all the snuggling I am getting. It makes the lack of being spoken too a little less hurtful. I know she wants me there, but I really can't help her. I can't fix everything like I want to. I just need to be there for her, giving her my love and support.

I must say life is tough. It is not fair. It is not perfect. But, no matter how hard it gets, things always end up getting better at some point. It is like a roller coaster. You go up, you go down.
And, at the end, you always want more. Well, I do anyway. :)

Monday, March 30, 2009

The next chapter brings strength

We are sitting here in the hospital bed. Summer is watching cartoons while I catch up on my blogs. We have had a pretty lazy day. We were up bright and early for radiation this morning. It went well so that was good. I got to have a nice walk this morning. It was so refreshing. I am hoping I will get to have another one tomorrow. I have gotten out of the habit of getting my cardio in the past few weeks. Heck, I haven't even made it to lift weights since last week sometime. Maybe I'll get back into it once things settle down with Summer. I just hope it will be before December.

We got the results from Clint's scan today and he is cancer-free as far as the doctor could tell. That is AWESOME news!!!! We didn't get to talk to him in person, but we will get to next week. They may want to send of some of Clint's tumor for research. His and Summer's cases are really unique so everyone is interested in studying them to see if they have the same gene mutations. Summer's tumor is known about across the country now it seems. It is so rare and then to add to that the fact that her Daddy has kidney cancer himself. I hope this is not her "10 minutes" of fame. Of course, nobody knows her name. It is all about her tumor type.

I think we will be going home tomorrow unless her fever spikes up tonight. That will be awesome because this room is getting smaller. Either that or our stuff keeps increasing. Maybe that's it. Every time I go home, I return with more than I left with. But, it is all good because all of that stuff helps to pass the time and you never know what she will feel like playing with. She has not really been into reading books lately, but I brought all of our library books because we need to return them this week. So far we have read one of them. I was so excited when we checked them out, but reading just hasn't been on the top of our list of things to do lately.

Today I got her out of bed to go outside for a little while. That was nice. She got to play with a doll that has a port like her. She cleaned the spot (well, she made me do that part) then attached the port with tape. It was neat. She got to keep the doll. Plus, she got another doll that she can color all over, but she wasn't very interested in that. She didn't think she could draw the face correctly, so she didn't try. She wanted me to do it, but I only did the eyes. Then I told her we will just wait until she feels like she is ready to do it. I mean as fun as it would be for me to decorate it, I think that defeats the purpose. :) They brought a big pack of water guns outside and filled them with water so the kids could water the flowers with them or shoot at a target. She also got a really cool princess craft kit after we were back in our room for a few hours. She gets to decorate wings, a tiara and a wand. She didn't feel up to it, so again we will save it for later. They are really good about trying to keep the kids spirits up by giving them stuff to do. I must say I am impressed with the hospital and clinic. Everyone has really been great here and for that I am thankful.

Our pastor came by today which was also nice. I got to unload a little and even shed a few tears. It is still hard for me to process all that is going on. So many things I don't understand, but I know that I can't understand everything in life. I just have to take it one day at a time and make the most of every day. I asked him to pray for us to have strength and patience through this ordeal. I told him about a little book I have been reading and how some of the bible verses have hit so close to home. Then I told him I was scared to read the next chapter. There are so many things that have just fallen into place since this diagnosis. I see irony in things on a daily basis. Well, as much as I was scared to read on, I did. The verse that caught my attention today was a very familiar verse to me.

"I can do all things through Christ who strengthens me." Phillipians 4:13

I know this is true. So, I will lean to Him for the strength I need to get through every day. He will be there for me every day. What more can I ask for? Well, I guess there is a lot, but really I should just be satisfied with that. Jesus loves me. This I know!

Running on empty, I mean Starbucks

I am so exhausted. I should be napping right now like Summer, but here I am blogging. I didn't get very much sleep last night. She has begun sleeping in the middle of the bed so I am on the edge trying not to fall off.

Nevermind. Apparently the dr. thought Summer needed to be woken up from her nap so she could tell her Hi. Lovely.

Sunday, March 29, 2009

What you've been waiting for....

My beautiful princess has her daddy's eyes and my hair

She's got both of our brains - she's helping Memaw with the bills...

She got to ride the carousel 5 times this day, but this was the only shot I got of her smiling at the camera. When she saw me taking pics, she always turned her head....She wanted to go play in the puddles.She's quite the photographer!Helping Daddy make brownie bites - YUMMY!!!She got a bite of the dough. :)
Nanny, Memaw & Summer getting ready for the haircut.

She's almost done crunching her ice....

Here we go....She was using scissors to cut paper - what a great distraction!!!!
She's focused on her paper!All done!!!!
Isn't she beautiful???

P.S. Here is a video of her opening a gift from one of my friends.

The post I am writing now...LOL

I am sitting in the lounge for the oncology patients waiting for Summer to wake up. Last night around midnight she decided she wanted me to go home and Daddy to come and stay with her. Needless to say, we were having a rough night.

We had to force her anti-biotic into her mouth, only to have her empty her stomach (got that from the nurse) all over the bed and herself, of course. I think I am done with the coaxing of the medicines. It is not working and we both end up getting so upset. It is terrible.

Last night I actually cried in front of Summer. She was crying and I just broke down. Then she tells me not to cry and I tell her that she needs to stop crying too. It was a sad, sad situation. My patience was out the window and her agreeing to do anything that involved medicine of any kind was out of the the question. With one exception, grape Tylenol. Yep, she took it like a champ. There is my light at the end of the tunnel. A little bit of good with all this bad. I guess I'll take what I can get.

So, I slept alone at home last night. It was so weird being the one at home. It felt crappy. I wasn't where I should've been, but I guess I did need the time to recharge and gear up for today. The nurse left Summer's antibiotic with Clint this morning. I may wait to go to the room until he tries to get her to take it. Maybe he will have more luck than me.

I think her hair is starting to fall out. Last night she got puke in her hair and I was trying to wipe it out with a wipe. I noticed a few hairs coming out. Maybe it was just my imagination, but I don't think so. I know it is going to happen soon. I've got to get it cut. I brought some clippers and scissors with me. Not sure if I will get around to that today or not. We will just have to see if she is up for it. Maybe when Memaw and Nanny get here I'll bring it up to her.

That is another thing. I don't know what to say around Summer or, rather, what NOT to say. I always tell my dad "less is more", and I think maybe I should follow my own advice. I don't know. I just know she is scared to death. I am scared to death. And, so is her daddy.

Please pray that God will give us all the strength and courage that we need to make it through the days ahead. Oh, and a little patience wouldn't be a bad thing either.

The post I wanted to write, but didn't

She's there, I'm here.


Saturday, March 28, 2009

Sleepover tonight -- at the hospital!!!

I checked Summer's temperature several times today. Around 3:00 p.m., it was 100.3. I had a feeling we were going to be heading to the hospital sometime this evening. I took it again about 45 minutes later, it was down to 99.8. Then around 4:45 p.m., it was 101.5. So, I called the Dr's office and they told me to come on into the hospital. We didn't have to wait when we got here, we just headed up to "our floor." Yes, we have a floor that we always come to when she gets admitted. Aren't we lucky? Well, not lucky enough to get one of the BIG rooms like we had last time, but lucky enough to always know where we are going when we get here. :)

Summer got sick twice last night at my mom's house. She ate pretty good for them last night, but this morning she didn't eat much. She threw up as soon as they walked in the door this morning. We spent most of our day on the couch. I did get off it to fix us all some lunch, but she didn't really want me to. When I got our plates fixed, Summer acted like she wanted to eat. But when she sat down with her plate of noodles in front of her, she told me her stomach hurt so I took her back to the couch after only one bite of chicken. She did eat a few strawberries and I had to coax her into drinking some Sprite. She wasn't really interested in anything I was offering her. After I ate, I went and got her and carried her to the kitchen hoping something would spark her interest. She spotted some cheese and crackers (the kind you dip into the cheese) and asked for them. She ate a whole pack of that and asked for another. I gladly got her one, but she only ate two of the crackers out of it. She wanted to save the rest for later, but I just ended up eating it after I realized she wasn't going to. Yes, I am the clean up crew now although I really don't need that job. I have enough trouble staying out of the cabinets without eating everything Summer doesn't finish too.

Anyways, here we are at the hospital getting Summer some antibiotics. They also did a chest x-ray to look at her lungs so hopefully that will look good. I think we will be here until Monday at least. I am pretty sure they will still start radiation on Monday, but I could be wrong. I am new to this so I don't really know what to expect.

I hope she gets to feeling better tomorrow. Her eyes have dark circles around them right now. :( She is laying here beside me, thumb in mouth, sleeping away. It is too bad she hasn't had her oral antibiotics yet. We will have to wake her up when the nurse brings them. She also has to get her shot. I think I will let the nurse do it unless Summer wants me to do it. I already know that she is NOT going to want anybody to do it. She does not like her daily shots, not that I blame her. I can't say they are the highlight of my day either. Well, here comes our nurse. Time for some fun! NOT!!!!!!!!!!!

Friday, March 27, 2009

"Mommy, why do I have cancer?"

I just realized this is the second week in a row that I have heard that question. And, what do I say when she asks me? "I don't know." More and more I wonder why this is happening to us. What is God trying to tell me? Lots of unanswered questions are in my head right now.

Another thing she said the other day was, "I wish I didn't have cancer." Again, what do I say? I wish she didn't have cancer too.

Today we had a breakdown in the bathroom over her morning meds. She was crying about how she did NOT WANT TO TAKE THE MEDICINE!!! I felt so helpless knowing that we don't have any choice. She has to take the medicine. Without it her body has nothing to fight off infection or germs.

We are supposed to monitor her temperature this weekend. If it goes above 100.4, we have to call the office and see about checking into the hospital. I'm not going to jinx myself by being unprepared, my bag is already packed! I really hope we don't end up having to go in, but at this point I know anything is possible.

I ran across a few Bible verses today which caught my attention. Answers to questions???? Direction from God? I don't know, but they really got me to thinking about things, making me wonder if this is all my fault. I know it isn't entirely my fault, but maybe on some level it could be due to some choices I have made in life. I'm far from perfect. I guess I'll never really know for sure. I just have to let Him lead me and show me in His way. But, that is easier said than done. I'd like my answers NOW, please. I am definitely not the most patient person in the world, although I think motherhood has given me a little more understanding of what patience really is. I still have yet to perfect it. I guess I'll just hurry up and wait. :)

I do want to share one of the verses I read which I think I should try to follow more closely.

If it is possible, as far as it depends on you, live at peace with everyone. Romans 12:18

Live at peace with everyone.

Wouldn't that be nice?

Sleeping in my bed

This is highly unusual for us. But, she got up around 4:00 a.m. and started to go out the bedroom door. I told her it was still night time and she asked if she could get in our bed, so I let her. It was a little crowded, but I did enjoy snuggling with her although she was twirling her hair in my face. I guess I should enjoy that while she still has hair. I am thinking about cutting it myself because that is what she wants to do. But, I may take her to someone who does it for a living. That just seems to make more sense to me.

We are still struggling with the grape flavored, pink colored antibiotic. "I don't want it. I don't want it. I don't want the medicine. I don't want the medicine. I don't want the medicine." Me, "You don't?" Loud sobs. Repeat cycle. Hmmmm.

We also have to put some numbing cream on her port area today before we go in for a chemo shot. Oh yeah, and a bandage. Crap.

This should be fun. What a way to start the day! Whiny 2 year old who doesn't want to do anything we have to do.

Oh what a beautiful morning!

Thursday, March 26, 2009

Just a cough

Summer has had a little cough since we got home from the hospital. I'm not sure what it is due to, but it has not been very bothersome. Just an occasional cough, cough. I am not too worried about it, but I am starting to get worried about her getting sick. Her counts are supposed to drop this weekend, and I don't really know what that means. I don't know if she is going to feel bad or just be highly susceptible to germs.

She gets another shot of chemo tomorrow and one next Friday too. Her radiation treatments start Monday and will go for 11 days, skipping the weekends. All of that "treatment" makes me a little nervous. The unexpected is so scary.

She is NOT enjoying her nightly shots. Yesterday, halfway through the day, she told me she didn't want a shot. Too bad, so sad. She's gotta get her shots. They help to stimulate her bone marrow so that it can do its job.

Tomorrow we also get to take antibiotics twice a day! That should be fun getting her to take the pink colored, grape flavored medicine. Oh the joy it brings me to give her medicine!!!

We have a sticker chart for Summer. Every time she takes medicine or gets a shot, she gets a sticker. When all the boxes are full, she gets to pick out a prize at the store. So far she has 4 stickers. By Monday morning, it is possible that she will have 15 stickers, maybe more if she needs nausea medicine. Luckily, I found some grape Benadryl chewable tablets. She hasn't had one yet, but we are going to try that next time we need some. I don't think the chemo she gets tomorrow is supposed to make her nauseous. So, thank God for that.

Well, my little girl wants me to go lay down on the couch with her, so I better get to her. Her baby "is staring at you" or rather me. :) Please continue to pray that God will keep her healthy as her counts drop.

Wednesday, March 25, 2009

Thank God for rainy days!

We are having a pretty good rainy day so far. Summer has been a couch potato today, but I don't blame her. She got sick an hour or so ago, but was ready to eat more just a few minutes later. She asked for more strawberries and an orange (which she decided to save for later). That was her second meal of strawberries today. I am guessing that strawberries do not taste that bad coming up because she was ready to eat more right after she got sick. LOL She also had a bite of my pizza, but didn't ask for another.

She asked for "frofel" a few minutes ago. So, we had a little phonics lesson. I showed her the word on the bottle and spelled it. Then I told her that "P" says "puh-puh." Then she said, "Propel." Wow, it worked! Hooked on phonics worked for Summer. LOL

I don't guess she is ever going to watch Bambi all the way through. This is the second time we have cut it on and she has barely watched any of it. Bambi's got nothing on Barney. She wants to play Land of Enchantment right now so I must go do that. I'm sure I'll be back if she lets me. :)

Pray for me, Pray for Others

I visited a blog this morning with the same title as this post. Please join me in praying for others today as there are so many people in need. Here is a link to their blog.

Check out RIGGS FAMILY BLOG to add your prayer request. Join a community of friends who care about you, and hope you will care about them.

Tuesday, March 24, 2009

Summer's first driving lesson

Summer had her first driving lesson yesterday. Clint bought a redneck truck complete with a rebel flag on the cab ceiling and no mufflers!!! So, we hopped in and took it for a spin in the back yard. Summer sat in Clint's lap and got to steer while he tried to spin out in the grass. It was fun although none of the pictures capture the fun it seemed like we were having.

Daddy got a phone call which ended the lesson.

My dad found a goose nest on the dock so we went to check it out. The mom and dad were very protective of their eggs and hissed at us when we got within a couple feet of it. They kept it up until we left the dock and they knew their babies were safe and sound.

Mother Goose guarding her eggs.
They were big eggs!!!
Dad is yelling at us!

Today was a good day. We just finished up a play date / dinner with Gavin and his family. It was very nice of them to bring us dinner - yummy pizza! Time for a little more Barney before we hit the sack. We've got three new videos to enjoy, but I think we will only be watching one right now.
BTW - Summer loves her new scrubs that my friend Lindsay got her. They are really cute and she has gotten lots of compliments on them. Don't you think she makes a cute little nurse???

A day like many others

Last night was great. Summer was full of energy. She was a little tired for the first part of the day, but after she had a pickle sometime in the afternoon, she perked right up. She was running around the couch in circles, we went on a walk to visited the neighbors, and did I mention the running around in circles? She was a live wire! It was nice to see her like that.

This morning she was "still sleepy" when got woken up around 8:15 a.m. I cooked breakfast for the guys and then whisked her out the door to meet some friends for breakfast. Then we went shopping. It was fun.

This morning at breakfast with my dad & Clint, she told me she was going to pay for us today. She said something about a million dollars. LOL Then she said her and Liliana might both pay. It was so cute.

She also did something else really cute today. Clint always teases her and asks her if her belly hurts. She will usually say yes because if she says no, he will say, "Is it tickle Summer time?" She does not like it when he tickles her, although I think she might like being teased. This morning she had a pen and she marked on her hand and said, "I wrote some letters and it says 'Don't tickle me!' " It was so cute. She is so smart. She has things all figured out.

Well, at least she thinks she does. Recently she has started to cry / whine to get her way when I tell her no. It does NOT work, but I guess she is not ready to give up trying yet. This morning she wanted a stick, but not the one that was on the counter the...one........whine, cry, pout....did NOT work. She did not get the stick. I have been pretty good about saying no when she wants something at the store. At least most of the time. Sometimes she does get special treats, but not every time. Today she got three new Barney movies. I guess he never gets old when your two. I must admit he doesn't really bother me although I rarely sit down and watch it all the way through with her.

I'm going to try to go grab a quick nap before I have to go teach tonight. I'm sure am tired! All that shopping today really took it out of me. Of course, all I had for lunch was a bowl of chocolate chip cookie dough. I might have a slight belly ache right now, but it was worth it. Now it is all gone so I can stop being tempted.

Thank God for the little blessings in life! They make it worth living.

Monday, March 23, 2009

Still sleeping

Summer is still sleeping. We had a good evening last night. She was ready for bed around 9:30. She came to me and told me she wanted to go to bed and that she wanted me to lay with her for a little while, which I did. She got up between 4:00-5:00 a.m. and threw up once. For the life of me, I CANNOT remember the time. Then again around 6:00 a.m. I forced some Benadryl into her which she gladly chased with apple juice. Notice, I did NOT say she gladly took the Benadryl. :( It is such a war to get her to take medicine orally anymore. Do these manufacturers not know that if they want kids to take their medicine they need to make it at least taste good?????????? I'm pretty upset that they don't sell grape flavored everything right now. That is Summer's ONLY taste of choice. I think she would probably like bubblegum too if it weren't pink. With medicine, it is NOT good to be Summer's favorite color. Go figure. I got them to flavor her antibiotic grape because she did not like the way it tasted at the hospital. Well, they did. BUT, IT WAS STILL PINK. :o Needless to say it did not go down without her shedding a few tears and crying her head off for about 10 minutes. Thankfully, she only has to take that three days a week.

Today we go to learn how to do shots. Won't that be fun???? I'm going to go with a big, fat NO on that one. I don't see how we could possibly make getting shots to be the "cool" thing to do. Or fun. I hate to resort to bribery to get her to do things she does not want to do. Like take medicine or get hooked up to an IV through her port.

I really hope this gets easier and she decides that she does indeed like medicine. Anybody out there think that is just wishful thinking???? I know in time she will have to get used to it. We are just going through an adjustment period right now. Let me tell you there is a lot of adjusting going on. I skipped out on my favorite shows last night for some much needed sleep. I actually begged Clint to go watch them on the couch so I could rest because I knew I was probably going to be getting up in the middle of the night. And I did. But, I am glad I got that extra hour and a half of sleep that I wouldn't have if I would've watched them.

At least there are still some things in life to be thankful for. A lot actually. I just have to remember not to focus on the bad and try to surround myself with as many good things as possible. Hopefully our friends will all be illness free so that we can visit with them in the months ahead. I know we will need them to help pull us up when we are feeling down.

Sunday, March 22, 2009

Happy to be home

But, exhausted at the same time. It was a relatively uneventful weekend. You know, just the normal chemo routine. :) Last night, or rather this morning, around 3:45 a.m. Summer started getting sick again. She got sick about 5 times between then and 6:15 a.m. They gave her some Benadryl in addition to the Zophran she was already getting and it seemed to help. When it kicked in, she slept until about 10:00 a.m. When she got up, I tried to encourage her to eat, get up and move around so we could go home. She said she wanted to stay. LOL. Talk about irony. When they want her to stay, she wants to go. When they say she can go, she's ready to stay. By the time my mom and Tre got there, Summer was moving around and playing like usual. But, she still wasn't eating at 1:00 p.m with the exception of two bites of my grapefruit. When she came across of jar of spaghetti in my purse, she decided she wanted to eat. Yeah!!! Glad I grabbed that out of her diaper bag when I ran home to shower this morning.

Clint came early this morning while I was doing my Jazzercise in her room. So, I finished up and went home to shower. It felt so good. I hurried back to the hospital though because Clint said he was scared to be alone with her. I don't know why they say men are the stronger sex. I guess maybe if you base it on physical strength, but emotionally and mentally I don't think so. Especially when it comes to taking care of sick kids. Of course, I'm sure there are some "Supermen" out there somewhere. :)

I am so happy to be home, although paranoia is starting to set in a little. I am not the germaphobe type - AT ALL. At least I didn't used to be. Now that my daughter's immune system is going to hell, I may cross over to the other side. No classes for us this week. I don't think her "counts" are supposed to drop until Friday or Saturday, but to be on the safe side, we are going to forgo her classes. I am slightly tempted to take her to a class on Tuesday, but I probably shouldn't do that either. I guess I thought we would be able to keep our normal activities up, but that was just a fantasy. It is okay for her to be around one or two kids at a time, but more than that is pushing it. Of course, these kids need to be healthy. Man, this is going to be tough. We already have a play date set up for Tuesday afternoon which should remain a go unless of course the other child gets sick between now and then. I hope not. Towards the weekend, I am thinking we will not be going around many other people. Maybe church on Sunday, but no shaking hands with everybody this week.

Summer is ready for me to go lay down and snuggle her so I'm going to sign off. How can I resist such a sweet little princess?

Thank you all for your prayers! Please keep them coming as our battle has just begun. We go back to the clinic tomorrow so I can learn how to give her shots. :( Then Friday we go in for an outpatient chemo injection. I'm sure they will try to get one or two more appointments in for us somewhere during the week. What else are we supposed to do with our free time? Maybe enjoy the beautiful outdoors? I think so. That is still on our list of things we can do!!!

Saturday, March 21, 2009

Pictures of my bundle of joy

She's crafty!!! Not really up for pictures this morning....Hiding from camera with Daddy.
She loves making cookies with Mommy...even in the hospital!

...and eating the chocolate chips....

....and the dough...

Watering her newly planted impatient seeds.
Hope you enjoyed our day at the hospital as much as we did.

Chemo and other fun stuff

Chemo went okay yesterday. It definitely could've been worse!!!

I texted my friends to let them know she was doing fine, napping at my side. Then she threw up. Then she did again. And, a little while later, again and ...... Darn it. Jinxed myself.

They drugged her full of anti-nausea meds and she fell asleep sometime in the afternoon. She slept through all her visitors. As soon as they left, I moved her from the couch only to discover she had peed all over the couch. GREAT. I was ALONE. So, I got her to the bathroom and stripped her down. They said I needed to shower her off since the chemo is in her pee. We are supposed to wear gloves when we deal with her "bodily functions" aka "pee, poop, or puke." The three P's. :) Oh the humor in life. Anyways, I guess the chemo is really toxic. So, I showered her and got her dressed. Oh yeah, did I mention she peed out of the shower while she was standing in the shower being showered??? Man, that was a mouthful. So, yeah basically we had a chemical spill all over the bathroom and me. Oh, and they had to bring me a new cushion/seat for the couch. Did I already mention how fun this was?

I put her to bed. I asked her if she needed to pee every time I woke up not wanting to wake up laying in pee beside her. (btw-I am LOVING this sleeping with her thing rather than the hard, cold couch) Once she told me she did and I carried her in the dark to the potty. Mistake. Her tubing was wrapped around her legs and she ended up peeing all over me before I actually got her sitting on the potty. However, she did pee in the potty too. I am very thankful that she did not pee in the bed all night! Every time she did pee, it was quite a bit because they are pumping lots of fluids into her.

She woke up from her "hibernation" around 3:45 a.m. I was not ready to get up. I turned on the TV and got her to watch it while I slept. Go me. Go Summer. She did eventually drift back off to sleep and we ended up getting up sometime between 6:00-7:00 a.m. First we played with bubbles. Then she got out of bed and played with her toys. Then we planted some flowers that our friend's mom brought for Summer. Summer really enjoyed this. We put dirt and then seed mixture and then more dirt into an egg carton. Then I let her water them with a little medicine cup. I do have pics, but the camera is at the hospital. I am on my break (THANKS MEMAW AND NANNY - YOU ARE THE MOST AWESOME PEOPLE IN THE WORLD) so I don't have them with me. I will try to post later if Summer will let me get on the computer. That is why I am blogging now because I don't know what the evening will hold, but I hope it will be more fun with my daughter. We are going to make chocolate chip cookies. I took the stuff yesterday, but we didn't get around to it because she slept all afternoon and evening. We may also paint. Possibly enjoy a little Barney. Who knows? I just hope it is not a puke fest.

I am still turning to God to help me gain peace with all the unanswered questions I have right now. I don't know why my path has turned in this direction, but I know He has a plan. I'm not really sure I like the plan, but it is what it is. I just pray that He will give me the strength to endure it all.

Friday, March 20, 2009

A Good Night's Sleep

Summer and I both slept pretty good last night. I started off on the couch, but after she got up to pee around 1:00, I got in the bed with her. When she was on the toilet, she said, "My hair falls out when I pee." Man, I really wonder what is going through that little head of hers. She is obviously processing everything she hears and is trying to make some sense of it all. We had a good snuggly night and I did not toss too many times. Woo-hoo!

Yesterday Summer's sister and neice came to visit while we were waiting for a room. It was nice to see them. Amanda played with Summer in the little house they have in the waiting room. It was good to see them playing together since it does not happen very often. I got to entertain Lexie who is an absolute doll. Afterwards Amanda visited a few more people in the hospital. On her was home, Lexie vomitted all over herself. Then again when she got home. Amanda called asking for advice. I had her take her temp., but it was normal. I told her to feed her when she woke up and was hungry. She did and the baby vomitted again. :( I hope she eats this morning and is not sick. Who knows what she could've caught in this hospital??? Poor baby.

Summer and I had a good breakfast this morning while watching Curious George. I was hoping she would eat a little more since I am worried about how the rest of the day will go, but I don't want to push her to eat and have her refuse out of reflex. She had some cottage cheese, a slice of bacon (I didn't even know she liked bacon), and a few bites of biscuit. She refused the grapes I offered her, but would've gladly eaten every drop of butter on her plate if I would've let her. LOL What is it about butter that is so yummy to her anyway? It is so completely unhealthy.

She didn't eat much yesterday after our picnic where she ate only Cheetos and chocolate chip cookie cake with icing. She had a few goldfish around 3:00. No dinner. Last night the nurse offered her some icecream or a popsicle around 9:45. She agreed to some chocolate icecream which she ate most of, but shared some with me. :) Then I got her to eat a jar of spaghetti. Yes she STILL eats jars of baby food spaghetti (Delmonte stage 3 with noodles). It has always been her favorite. Of course she will eat spaghetti and meatballs too. Or homemade spaghetti. The girl is a true noodle lover. I wonder what she will feel like eating today.

Right now she is playing with playdough making me French fries. I taught her how to do make them last night and of course she just had to make some more today. She got some little playdough creation buckets and a 24 pack of playdough from my Bunco buddies. We brought the beach one with us so we are making starfish and all sorts of things this morning.

I'm going to get off here and play with her. She just had her second dose of Zophran and another anti nausea medicine. I am going to have to get her to take something orally this morning. Wish me luck with that! I sure hope it tastes good.

Thursday, March 19, 2009

Thank God for picnics

Pics thanks to Ashley our awesome child entertainer / playmate. She rocks at getting the pics out quickly!!!
Enjoying the picnic, but not looking our best. :)

Most of our day was spent waiting for a room. We got to the clinic at 9:00. We signed in and played and waited for an hour and a half for them to call us back so they could hook up to Summer's port. At 11:30 they had a picnic for the oncology patients at the rooftop garden. It was a nice surprise. They had hot dogs, PB&J, chips, a chocolate chip cookie cake and soft drinks. Oh yeah, and toys!!! There is no end to the toys in this place. After Summer got hooked up to her port, she got a new baby doll. This doll has brown eyes just like her. I think this is the first doll that did not have blue or purple eyes. They had also bought some new toys to play with at the picnic. Bubble swords, light-up fans, balls and more. They really try to spoil these kids so they think the hospital is a great, fun place to be.
We got into a room around 4:00 or so. Who knew it could take all day just to get a room? They will not start the chemo until the morning. I am not sure if that was the original plan or if it just took too long to get us a room. Either way, they are supposed to start it at 9:00 a.m. tomorrow. They said they will start giving her nausea medicine at 2:00 a.m. and then again at 8:00 a.m. That is scary, but hopefully it means she will not be puking her head off around noon. We'll just have to wait and see about that though. I won't get my hopes up.

Well, my little girl is ready to head back to our room and play with playdough so I better wrap this up. Hopefully we will get a good night's sleep. I wonder if I will end up in her bed or on the couch. I feel some good snuggling coming on soon. I'm sleepy and so is she. Maybe we will skip the playdough and go straight to some bedtime stories.