A long clinic day

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

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

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

Mouth sores are no fun!

We are home. Summer hasn't had a temperature in over 48 hours so we were good to go even though she is still only eating chicken noodle broth and icing. She did have a couple of bites of yogurt with her allergy med mixed in this morning, but it was not a happy couple of bites. When we got home, she told me her belly was hurting so I gave her some Benadryl. She watched Barney then Veggie Tales then took a nap. We will probably stay at home the rest of the day. I am cooking dinner and we may ride the bikes later if she feels like getting out. If not, we I will be cleaning her room.

Her mouth and belly still hurt. She started swishing again last night when I realized how bad the mouth sores were hurting her. I looked in her mouth and all I can say is "YIKES!!!!" I hope they clear soon so she can eat more foods. She tried a hot dog yesterday, but couldn't eat it. She even got to where the icing hurt her mouth. To top it all off, she COULDN'T suck her thumb. Misery. It must have been hurting pretty bad because that thumb has been in her mouth all week! She got some morphine for that pain last night and then drank a lot of broth....like 3 cans worth. Yay for morphine!

She is not feeling well right now. Complaining of belly pain, but watching cartoon on the couch. I have a couple of fun crafts when she is up to it, but today will probably not be the day. We are back to the clinic tomorrow for the last chemo for cycle 5. Then we will hopefully have the rest of the week to "party like rock stars." LOL Next week we are back in for cycle 6. Unlike most, I can't wait for this summer to be over. That means we will be just about done with chemo which is where we all want to be.

Platelets today, blood tomorrow

We are at the clinic now waiting on platelets. Her white count is .2, platelets are 17,000 and hemoglobin is 7.?. So, she will need blood too. They are going to wait and give that to her tomorrow though so she doesn't get too much fluids going in. That is fine with me because it takes about 3 1/2 hours to get blood and only about 30 minutes for the platelets. Of course, that is when they get here.

So far still no fever. She is starting to get nauseous I think. Last night she had a bite of chicken noodle and gagged it right back out. Today she is hungry, but she says her belly hurts really, really bad. She keeps trying a bite of different foods, but nothing seems to be good enough to keep her eating it. One bite is usually all she will eat. Except for M&Ms. She has had that along with 1/3 of a Pop-tart today. I am thinking it is nausea and not actual pain. Her belly has been hurting less than usual, so that is good. Maybe we have a good medicine regimen going for that. She is still on Zyrtec for allergies and Zantac for belly pain. I give the latter to her in lemon yogurt every morning, along with probiotics. She is also on 1/2 a serving of Miralax a day. I have not been giving her the Doc-o-lace they put her on last week to help soften her stool. I think the Miralax is doing a good job and she can't swallow the co-lace pills anyway. The shots are still going too. Looks like we will probably be on them until next week at least. She still doesn't like them too much.

She is in her "infusion room" now watching Barney. It is one she hasn't seen before, if you can believe that. She has now added it to her Christmas list. Oh yeah, she's already got a list for Santa started. LOL So far we have "Fly me to the moon," "Alvin & the Chipmunks," and now Barney "Round and round we go" on it. I can only imagine how big the list will be by December. :) I am thinking there is something else I am leaving off, but I will wait for her to remind me. We have also watched "Alvin & the Chipmunks" at the clinic this morning. I am hoping the platelets get here soon so we can get out of this place and go see my aunt. She is hanging at the pool today and we might just join her. Summer won't be able to swim though because they are leaving her port accessed since she has to come back for blood tomorrow. Right now she is fine with that because, as you know, she doesn't like for it to be deaccessed.

Tonight she is going to play with her cousins while I go play Bunco. I hope she is feeling up to that visit since she is kind of on the puny side now. They usually perk her right up, so I am sure she will enjoy it even if she isn't feeling great. I am hoping she does not get a fever this cycle, but if she is I hope she gets it soon. We are supposed to go to Lake Winnie with Lana's Love on Sunday. She hasn't been since she was a baby and I think she will really enjoy it. Of course, that might be too much to ask. We have had a rather uneventful past two weeks. However it turns out though, we will deal.

I want to take a minute to thank all of my faithful commenter's. I really do appreciate all your support, kind words and virtual hugs. You guys always lift me up when I am down and just knowing you are there rooting us on is nice. I am also grateful to those of you who pray for us. We are so lucky to have such a wonderful support system. Thank you all!

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 butt....one 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 sandpaper....at 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!!


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

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