Not usually a beggar, BUT

I would love some more votes for the picture of Clint and Summer I submitted for a "The Look of Love" themed picture contest. So, if you feel inclined please click on the link and leave a comment voting for them (or if you must, some other picture :[ LOL). They are picture #8. :) Happy voting.

In other news, I have four kids up and one still sleeping. Yep, I'm in a house with 5 kids willingly! I must say it is actually something of a treat because the bigger ones help keep Summer entertained so I can do other things. Of course, they think they can take care of the 1 year old too which I have decided is not such a good idea. Every time I turn around they've got her on the couch. Leave the baby on the floor!!!! The baby I am referring to is my grandbaby, Lexie. She is such a good baby, but you still have to watch her or she'll have a mouth full of marbles. She is also the only one that is still sleeping. The other kids are my sister's kids and Katie (a friend's daughter). They have been playing pretty awesomely together and the sleepover went about as smoothly as I could of hoped. I even got a little "me time" in the hot tub last night. :) I am ready to hand over two of the kids to my dad. I've had them since Thursday. I'm sure I will take Lexie home at some point today although I really hate to see her go. There's just something about having a baby in the house.

I am hoping Summer will want to sleepover at Paw-Paw's too, but I'll have to play my cards right. She has been wearing down the past few days and seems to be feeling puny at times. She is still eating even though she is not taking the Zophran like clockwork. I forgot to bring her swish medicine with us to the lake, so I really hope she doesn't have any mouth sores pop up over the weekend. I better get off here and tend to Summer. She's on the couch sucking her thumb.

Cycle 7, Day 1 update and pics

Summer is doing pretty good at the end of day 1 of chemo. She has been pumped full of drugs today: heart protectant, 3 different chemo drugs, mesna, zophran. She weighed 34.3 pounds this morning which is the most she has ever weighed. My baby girl has all but disappeared over the past six months. No more baby fat or sweet innocence. She has been introduced to pain and sickness like she has never known in her short life. I pray that all of this is not in vain and she will be cured. She was a little nauseous earlier this evening when she saw the plate of food they brought her: baked chicken and mashed potatoes. I think it was all the green spices on top of the chicken that got to her, but who really knows? She made it to the trash can and didn't really lose too much. Wasn't much in there to begin with. All she ate today was a little egg, about 1/4 a piece of toast and some vanilla wafers. This evening she ate several black olives and some chicken noodle broth. We are currently waiting on more broth. I'm glad to see she is eating something. Now, here are the pics I promised.

Decorating the sugar cookies she just had to make (but didn't eat any of....) The final product of our work: turtle, heart, lion, tree & koala bear cookies

Lexie eating a jar of veggies and rice

she's starting to teeth at 11 1/2 months

Summer is dressed in my pool wrap

Playing in water downtown

Wade helps Katie and Summer with their fish

Wearing the flowergirl's dress from my wedding

Her picture on the Walnut Street Bridge

How adorable is she????

I love you!

Daddy carries his tired little girl

Posing under her pic

Our family of three

Summer eats some goldfish at the United Way fair

Katelyn, Summer and Liliana go way back....well 3 years :) Swimming and making faces

More funny faces

Smiling for the camera again. What a lucky day!!!

Summer was a prankster giving family members a pizza box with a toy rat in it. LOL

Cycle 7 starts tomorrow

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

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

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

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

Hallucinating and such

Yesterday was by far the roughest chemo day we have had so far. Even with the pre-med of Benadryl, she had a reaction to the Iphos. She ended up biting her thumb and causing it to bleed which warranted a band aid and no more sucking. That was before 1:00 p.m. She briefly napped after the Benadryl, but kept waking up in a fuss. When I got back to the hospital, she was upset and I got her to calm down, but it took a few minutes. That didn't last long and she ended up getting some Ativan which should've knocked her out. It didn't. Not even close. She had been twitching and seizing since getting off the Iphos. so that is why they gave her the Ativan hoping she would be able to relax. No such luck. She didn't have control over her bodily movements. She was upset because she lost her thumb. The doctor ordered a CT scan of her brain and EEG to make sure her brain was okay. It was.

We played Pretty, Pretty Princess, but she couldn't even hold the pieces of jewelry or put them on. She could barely stay sitting up. It was not a pretty sight, but I was trying not to get too freaked out. Clint picked this time to come and visit us. He was pretty upset seeing Summer in such a helpless manner.

My mom came by to visit/help after work. We watched Summer pitch a fit to ride her tricycle for a while. She couldn't walk much less operate a tricycle. She didn't understand that though. She just wanted to ride. It took forever to get her calmed down and even longer to get them to give her more meds. I don't know why it was so difficult to get them to give her something else to calm her, but they finally did after 8:00 p.m. More Ativan. It didn't help this time either. After my mom left she started hallucinating. She saw a crab, smiley faces on the floor, a castle on a white blanket, a dog house above my head. She was really tripping out. Reaching for things in the sky, staring intensely at the palm of her hand, running her fingers on the screen of her DVD. It must have been in 3D in her mind. I was tired and ready for bed, but she wouldn't/couldn't fall asleep. I bet I told her fifty times to "lay down" which she did, briefly. Then she would sit back up and make me nervous, but I was sleepy so I just kept telling her to lay down. She wanted to play with her toys. She wanted to watch TV. She wanted to ride the tricycle. All I wanted her to do was sleep. I even took the band aid off of her thumb hoping she would fall asleep if she could suck it. Nope. She didn't go to sleep until after 2 a.m. which is very unusual for this cycle. She usually sleeps all day. I guess her brain was overstimulated or something.

It was a crazy day and I am soooo glad it is over. We only have one more of those cycles left. They may lower the last dose of that cycle by 20%, but it is up to Dr. Gratias. I just hope she doesn't have as bad a reaction as she did this time. She only slept about four hours last night and she is still awake. No naps today and she is still going pretty strong. I hope tonight is not a repeat of last night. If so, Daddy's got Summer duty. :)

Her ANC was over 2000 this morning. Her platelets were around 90,000 and her hemoglobin was above 10. I hope these numbers don't plummet too fast. We are not due back in the clinic until Monday, although the doctor said I could come Thursday if I want to. Seeing as we have been in the hospital since last Thursday I think Monday is soon enough for me.

Shots start tomorrow. We started the swishing with Perodex today to hopefully keep the mouth sores to a minimum. Please pray that we evade a fever this cycle. It would be a first, but anything is possible. In the mean time, we are going to try to steer clear of public places. We did go to a birthday party tonight, but I think that will be it until her numbers are back up. I just hope it is as easy to do that as it is to say it. Wish us luck!!!

She got a bolus

This morning there were trace amounts of blood in two of her urine samples, so they gave her a bolus to flush her out before starting chemo today. These drugs can cause your bladder to become toxic which in turn damages the bladder. More than likely this is a minor thing and not something to be overly worried about. They are going to give her Benadryl after the Iphos. but before the Etop. today (that's chemo slang....LOL) The Iphos. is the one that can cause seizures, but the side effects do not generally start until after it is all infused and the next drug is started. I am SOOOO happy they are pre-medicating her today. It is no fun to sit and watch her body convulse for an hour. I hope her thumb is not in her mouth yet. It really needed a few hours to air out. It is looking kind of funky which is really par for the course. Summer told me this morning that we need to soak it in water. Of course, we'll have to put some Epsom salt in there too so it can do its magic. I doubt we will ever get around to that though. It depends on how it looks when we get home tomorrow. Her cooperativeness plays a part too, but if it is really hurting she will usually do what's best for her thumb and let it soak.

She was on the tricycle again this morning with Paw-Paw in tow when I left. I'm glad she felt like riding some before chemo started. It is her exercise, and yes SHE did call it that. :) It is also good exercise for whoever follows, especially when you add in some walking lunges.

She had some Frosted Flakes with milk for breakfast, but not too much of it before she was "full." Then she drank a carton of OJ & Miralax. She still has not pooped since Thursday. I can't believe it, but it must of been all the cheese on the sandwiches???? When we get home we will get it all straightened out though I am sure. On the other hand, she wants me to bring her tomatoes and balsamic vinegar when I go back to the hospital (she gets this from her Daddy). We'll see if she eats any though.

Last night (in the evening) she was conscious and fidgety and seemed to be uncomfortable. I called the nurse and asked if she could have some Benadryl. Then I asked Summer if she wanted to go to sleep or stay awake. I told her they could give her medicine to help her sleep and make her feel better, but she grunted that she wanted to stay awake. She doesn't talk very much when she is on these drugs. About all you can get out of her is "I need to pee." Maybe a nod or a head tilt. And, that's what I got. When the nurse came, I told her I asked Summer and she didn't want to sleep. Since she didn't seem too uncomfortable or fidgety, I let her just lay there beside me drifting in and out of sleep. And, of course, giving that thumb a good sucking. She had a pretty peaceful night and slept really hard wetting her panties a few times. I noticed that she is not peeing as much at one time as she usually does on this cycle: 150-200 ml vs. 300-400 ml. Don't if that has anything to do with the blood in the pee, but just wanted to make a note of it while it is still in my head.

As always, please keep praying and sending positive vibes our way!

Gotta love talking dogs! ***UPDATED***

Martha is my favorite! :p That is the cartoon Summer is watching right now. What's so great about a talking dog you might say? Well, this dog teaches vocabulary words. Like today, add and subtract. It is pretty cool and overall bearable to sit through once or twice a week. For me, that is. Summer could watch it everyday. She has really been missing "The Big Comfy Couch" and I need to go online and see if I can find it. I don't really like surfing the web though. There are just TOO many things on it and it can suck you in for hours. With Summer, I just don't have hours to sit at a computer. We are talking minutes people. LOL

We are off to the clinic this morning for a finger prick and count check. Hopefully, she will not need blood or platelets and her white blood count will be above 1. It has been around 0 or 0.2 for over a week, the highest it got was .4.

She looks better than she did yesterday and is actually sitting up watching the cartoon instead of laying down in the fetal position. She often sleeps in that position now.

Ok, so I don't know what I've started, but last night I tried to sleep in my bed. Let me just say that I woke up in Summer's room. She begged and pleaded for me to sleep "all night" in her bed. I didn't want to start something and never be able to sleep in my bed again so I didn't fully agree. I told her I would stay in there some. So, every time she woke up alone, I was beckoned. "Mommy, I need you." or "M-O-M-M-Y!"....boo-hoo-hoo. When I finally gave up and decided to stay in there (which was after Daddy closed our door and woke her up, I'm sure), she seemed to sleep for longer periods and only stirred instead of fully waking and sitting up in bed like before. BTW - She did complain of belly pain several times during the night. :(

She still did not want to eat or drink this morning, so I gave her a Zophran. Then I fixed her some apple juice. Well, actually I just grabbed the cup from yesterday from the fridge. It was half-full. When I set it down, Summer started complaining there wasn't enough in it. I was thinking she just tricked herself into drinking more apple juice, but went along with her desire for more juice. She just asked me if she had to drink it all, and I told her to drink it to the 3. Then she said, "I think I can drink it all." Oh me. It looks like it is going to be an interesting day. I really hope we are out of the clinic before noon. If her counts are up, there is a trip to Chuck E Cheese in our future!!!



*********UPDATE*********

Her counts are still at zero. Her platelets were only 11,000 so she is getting 250 ml of them right now. That is the second time this week she has gotten that much. Looks like chemo will be delayed until her counts come back up. The doctor also mentioned we might need to look into other feeding methods aka feeding tube / g tube. Boo! Let's hope she puts some weight back on this weekend. As the cycles progress, it is normal for it to take longer to come back up because the drugs have a cumulative effect. Please pray she is able to get back up to around 32 or 33 pounds. Today she was at 29.6 pounds which altogether isn't too bad. She took all her meds yesterday and today so we are back on track with them (Neupogen shot, Zyrtec, Zantac, Miralax, Zophran, probiotics). Gotta run it is almost time to deaccess the port.... :( The best of the day is still ahead. Not sure what we will do, but it won't be Chuck E Cheese.

Sleepover in Summer's room

Summer and I had a sleepover in her room last night. I thought it might be easier than hopping out of the bed a million times and going into her room to calm her. It was easier since I was right there and she often went right back to sleep, but her bed is not nearly as comfortable as mine. I think I will start off in my own bed tonight. She did wake several times to pee and to complain of her belly hurting.

I am really hoping she will feel better soon. It seems like she wants too, but she doesn't so far. Of course, she has become a littlewhiny little girl lately. All she wants to do is lay on Mommy. LOL Well, it's not really funny. I am enjoying her warm and snuggly body, but when you have to carry her to the bathroom with you and let her sit on your lap while you pee, it might be a bit too much Mommy lap time. :p

She is still not eating very much. My mom has suggested I make her work for her lap time. Well, not work, but eat. I am going to try this today, if necessary, but hopefully she will just want to eat on her own. I REALLY do NOT want to end up back in the hospital before Monday. That is soon enough for me. That being said, she HAS to eat today. She has been on Zophran since Sunday pretty much around the clock. We have never given it at home before since it is not a cheap drug, like Benadryl. But, since her nausea seems to be lasting longer than before, I decided to get a prescription for home. Thankfully, it comes in a tablet form that dissolves on her tongue. I am also grateful that Summer does not hate taking it. Once I get her mouth open, lol, she doesn't complain about taking it. I heard it has a strong aftertaste, but it doesn't seem to bother her. I think it is actually easier for her to take than the grape Benadryl tablets.

I also got her Zantac in her yesterday via one spoon of lemon yogurt. And, that's all she ate of that. She told me she couldn't take it and that I needed to get a throw up bag. So, I told her if she needed to throw up she could, but she was going to try to take it. After a little coaxing, she did. She did gag, but still managed to keep it down after taking a few sips of apple juice.

The rest of her diet yesterday included about 5 bites of an ice cream sandwich, 1/2 a fudge round, a little broth, 3 sips chocolate milk, 2 ounces of water, and about 6 ounces of apple juice. Not much, but hopefully enough. I am keeping a close eye on her so she doesn't get too dehydrated.

I know the light is just around the corner. We just have to keep looking for it and try to do it with a smile on our face. That is not something that is easy to get Summer to do right now either. She seems very sad and miserable. I told her if she smiles, it will make her feel a little better. Still no smiles. She always was one to want instant results and if they aren't, then "it doesn't work." Please pray that God will lift both of our spirits.