I've Got a Cling-On!

I could tell Summer's counts were low before we even made it to the clinic today. She has been super clingy to me since Friday. She ended up going to poker night with me on Saturday because the thought of being away from me brought her to tears. It turned out okay though because there was a little dog there for her to play with. Yesterday, we went to see the new puppy that Memaw and Nanny got her. When she saw the pictures on the phone that Memaw sent, she wanted to name it Bark. But, (luckily) when she saw the dog, she said her name was Scratch. She wanted to spend the night with Memaw, so I left her there. Later in the evening, I got a call from her. She was missing me so bad that she had Memaw and Nanny bring her home. That was a first for her (and hopefully a last). We had a good snugly evening together. She fell asleep in my bed and was transferred to her bed when Daddy came to bed. A few hours later, she was back. After a while, I took her back to her bed, but an hour or so later, she was back again. When she is feeling bad, I guess there is no place else like being with me. I'm enjoying all the snugly love though (although the whiny voice not so much). She is emotionally fragile when she does not feel good and the littlest things can bring her to tears. I can't wait until she is feeling better, but I'll enjoy the snuggling in the mean time.


She needed blood and platelets today. Her hemoglobin was 6.9 and her platelets were about 13,000. Her white counts are in the dumps too at .2. So, we will be staying at home this week trying to dodge the fever that will land us back in the hospital. Not sure if she will be up to trick or treating by the end of the week, but if she is not, we may just go to a trunk or treat at church. Or, we may even stay home. We'll just have to wait and see.

BTW - if you have not done so and would like to vote for Clint and Summer (or another picture) in The Look of Love themed photo contest, hop on over to this blog. They are picture #8, just in case you can't tell. :) To vote, you need to leave a comment on that post voting for them. Today is the last day.

Another Monday at the clinic

Oh what a weekend! Summer got to camp out with her cousins and had a great time. She got to spend two nights with her Memaw just like she wanted. She has still been eating pretty good despite the mouth sores that showed up over the weekend. Yesterday, she woke up from her nap crying they were hurting so bad. She said she couldn't even swish, but after suffering for a while longer decided she would. She has two different kinds of swishing products and ended up using them both. She has only used one once because she doesn't like it. It is pink and doesn't taste good, but it numbs her mouth I think. After she tried it, she was ready to eat. I hope they go away quickly. I think they usually do so maybe by the end of the week they will all be gone. She hasn't taken her nausea medicine today and has still been eating pretty good. PTL! I have noticed that she has been a little more tired than usual the past few days, but she has not "crashed" like before. I am so thankful she is handling the chemo so well. She got her last shot of Vincristine this morning and only has one more round of chemo to go. I am excited to be at this point, but a little scared too. I know I need to let the fear go and not focus on "what if it comes back?" But, that is easier said than done. This is MY little girl we are talking about and losing her would be devastating. It is all in God's hands though and I just have to have faith that He will bring her through this so she can live a long, healthy life.

We are in the clinic now waiting on blood results (and a hamburger with fries and oatmeal raisin cookies for Summer). She has been on shots for about 10 days. They upped her dose of Neupogen to double what it was before last Thursday. I hope this means her white counts will recover quicker than they have been. I'll be glad to be done with the shots for this cycle because she still cries when she gets them and says "it will bleed." I am not really anxious to get the last chemo underway, but the earliest we could start would be next Tuesday. I highly doubt it will start then, but I have been wrong before. Once or twice. LOL

I guess I'm going to go watch Summer blog some bubbles. She finally learned how to do it today. She has had trouble adn I finally figured out it was because she was holding her lips wrong. Now that she knows to pucker and make a circle with her lips, she is a pro. She got a butterfly tent from Miss Ashley today. I can't wait to go home and set it up. I just hope she will play with her dolls in it, but I am figuring I am going to have to contort my body into some uncomfortable position for at least a little while. Should be fun no matter how it turns out!

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

Counts are back. White count is .4 and ANC is 0. Looks like we are stuck inside a few more days since her immunity is nil. She needed blood and platelets. So, she is getting the blood now which started after 3:00 p.m. We will be here until probably 6ish this evening. :( That is a long day at the clinic considering that we were here at 8:55 this morning. Looks like we will miss dinner at Chilis with Memaw & Nanny. Today is the day they donate all proceeds to St. Jude. Maybe we will just get takeout because Summer was wanting a steak last night and it sounds pretty good to me too. Clint brought me some lunch and my laptop so I have not been completely bored sitting here waiting. Summer is napping while she gets blood. Hopefully, she will not start running a fever or anything crazy to warrant another hospital stay this week. A week off would be nice for us both. Of course we have to come back to clinic on Friday for a count check to see if she can come off the shots. I just hope it doesn't turn out to be a long day like today.

Vacation came too soon!

Last night around 7:00, Summer started running a fever of 100.4. An hour later it was 101.1 and we were headed to the hospital. All of her counts are low. WBC is .3, hemoglobin was 7.?, and platelets were 12,000. She has already gotten platelets today and is now receiving blood. Praise the Lord for people who donate their blood and platelets!!! If you are able, you should go to Blood Assurance (or wherever you have to go locally) and donate some too. I don't know where Summer would be without people donating because she needs these products frequently. There are many others like her out there who need these products to survive. So, please give if you can!


Not sure how long we will be here. Haven't heard anything about her blood cultures yet. They are usually all negative. Only once have we actually know the cause of the fevers and that was when she had cellulitis. I am hoping the ones she is having this week are just due to neutropenia (aka lack of white blood cells). Her weight is still good at 33.2 lbs. She is not eating much now though, only one strawberry today.


Not much else to say today. Please keep praying and sending positive thoughts/vibes our way! One more cycle of chemo next month, then scans. Hopefully they will remain clear and we will be at the end of this nightmare.

Up, up, down, up

That is Summer's fever. Last night it got up to 103.9, auxiliary. Yesterday it was mostly between 101 and 102.8 every time we took it. Once during the night and this morning it got down to 98.?. The Tylenol usually doesn't get it that low in between doses though. Maybe more like 100.?. Anyways, those are just numbers. The fact is she is still fevering. She has been on two antibiotics every 8 hours since yesterday morning - Cefepime & Clindamycin. The Cefe is our "normal" fever antibiotic. She has been mostly sleeping and is currently doing just that. I am laying in bed beside her listening to the Barney movie in the background. I thought she was going to watch it, but I guess she is not feeling good and her body wants to sleep.

She is getting blood and platelets today. I'm not sure what her counts are, but I'm sure they are low since she needs those two things. It should be a pretty busy day at the IV pump for us. Good thing all she has to do is lay here.

When we got to our room yesterday (around 4:45 p.m. We got to clinic at 8:30 a.m.....), there was a Anne Geddes Baby Bunny on her pillow waiting for her. It is so precious. It slept in the bed with us last night. Of course, Summer didn't give up Teddy. He is always her snuggle buddy. She did cuddle the bunny baby for a few minutes in the middle of the night, but then she wanted to cuddle me. Aaawwww. LOVE THOSE MOMENTS! She also rubbed my hand and told me I was "so soft." She told me she loved me. Just out of the blue in the middle of the night after a trip to the potty. I even got a hug and kiss on one of the trips. All of these things unasked for, but SOOOO wanted and needed. They are the ones that mean the most. You know, when you don't have to ask but they are offered freely. Unconditional love. I recall a blog post that I wrote 3 years ago on the same subject. Feel free to take a trip back to when I was a new mom and read it. Wow, how time flies, but that love still remains. Now even stronger due to cancer, a blessing & curse. Wait! Did I just say that? A blessing? Although I would never in a million years want to repeat receiving that awful news (no, not AGAIN), I have realized some things I don't think I would've otherwise. Life is so fragile, so unpredictable. If you aren't doing the things you have always wanted to do in life now, when will you? What are you waiting for? Who knows how many more days any of us have? So now, more than ever, I am LIVING my life. I'm not waiting. I try to experience as many things as I can. This cancer has slowed us down a bit, but hopefully that will only be temporary. We should probably be on mostly "house arrest" for the next few months to keep Summer as safe as possible until her treatments are finished. But, after that, when she is feeling healthy again, we will be off to live the adventure we deserve. After all, life is an adventure and you only live once.


P.S. Her weight was 30.9 lbs. yesterday. Not too bad, but she isn't eating much now. Darn mouth sores!

Blood today

Summer got blood today. Her platelets are still above 70,000 so she didn't need more of those. She hasn't ran a fever since yesterday evening so I am hoping we will get to go home tomorrow. Of course, I'm not getting my hopes set too high.

Tre came and spent most of the day with her. They had a good time watching a movie and coloring. My mom got off work a little early and came by to spend some time with her too. I am so lucky to have those two in my life and so is Summer.

It has been a rather uneventful day which is nice. After Mom & Tre left, Summer and I watched Barney's "Night Before Christmas" video that I brought from home. We had a slight dispute over whether or not Baby Bop and BJ are dinosaurs so we called her cousin Leah to see what she thought. I think Summer was really just being silly by not believing it, but whatever floats her boat is fine with me. She really is a silly little girl at times. I guess she gets it from me (or my mom). Clint is definitely more serious than us. She is currently sitting on the bed coloring with a blanket over her head, talking to the crayons. LOL

Her belly has been hurting her today which is not unusual. She hasn't eaten too much today- french fries, nutty bars and chicken noodle soup. Oh, and two bites of cheese stick. It's better than nothing though so I'm not complaining. Wish I could lose my appetite for a few days....then again if it takes cancer for that to happen, I'd rather not.

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!

High fevers

Summer has been running a high fever since yesterday. I think the highest it got up to was 102.9 under her arm. So, that's almost 104 if taken orally. Too bad the mouth sores (or maybe just a tired of being poked and prodded little girl) aren't allowing us to take it in her mouth. This is the highest I remember her fever ever being. So that makes me think it may be something more than just being neutropenic this time.

She finally ate something at 10:00 last night shortly after she vomited (for the first time that day). She hadn't eaten since lunch the day before so I was glad to hear her ask for something even though I was ready for bed. She drank most of the broth of the chicken noodle soup she requested and had a few sips of Sprite in between. Before that she had only drank a little water and about an ounce of apple juice all day. Good thing they have the fluids pumping into her.

Yesterday was an extremely long day for me. We were in the clinic from 8:30 a.m. until almost 3:00 p.m. waiting on a room. We initially came in for blood, but she didn't even start getting it until 4:00 yesterday afternoon. I was a little frustrated by this seeing as we were just sitting around all day waiting. She did get a dose of antibiotic (for the fever) around noon, but that was it. She needed her Neupogen shot too which I told them, but it never arrived. When we got to our room, I told the nurse and she got it for us. (btw-Ms. Linda is an awesome nurse!!!) The funny thing is the clinic was SOOOOO slow yesterday. I bet they didn't see 10 patients all day and they had 3 nurses. So, not sure what was going on, but I hope next time they are a little better at getting things done and not just waiting until we get a room to do what we came in for. Especially when we show up first thing in the morning. I mean we could've just stayed home and waited until a room was ready rather than twiddling our thumbs all day (well, not actually). :(

She got sick again around 2:30 this morning. It amazes me how good she is about puking in the appropriate place, especially since she is only 3. I guess she can feel it coming on and lets me know so I can grab the puke bag. She is usually holding Teddy when the urge hits and somehow he has managed to stay clear of all puke. Of course the first thing I do when I realize what is about to happen is remove Teddy. Lord knows we don't want him puked on cause he is a real comfort to her. That and her left thumb. Not sure what she would do without either of them.

Today is the funeral for Jayden. My mom is planning on spending the night at the hospital with Summer tonight so that will allow me to go pay my respect to his family. I know it will be hard, but I feel it is the right thing to do. If it was my kid, I'm sure I would want others to be there. So, I am not going to take the easy road and skip it. I just hope I don't get a turn at burying my child. Life would be so dark and gray then without my sunshine. Please keep Jayden's family, as well as all the kids with pediatric cancer, in your prayers. God doesn't need to hear specific names to answer prayers. He knows who they are.

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!

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. :)

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