Just a little morphine

Last night, Summer woke up in a terrible fuss. She was crying and wouldn't stop. She said her belly hurt (all over). She said her feet hurt (???). It was hard to get her to calm down. The nurse wasn't sure if she was having an allergic reaction to the Vancomycin because her face was red and splotchy, but she was crying. So, she went to get her Benadryl and called the resident. They decided a little morphine might make her feel better (since that is the only pain medication they give through IV and she won't take anything but Tylenol orally). She was calm by the time they gave it, but it must have helped because she didn't wake up again for hours and was in much better shape when she did.

Her fevers are dwindling which is great. We are not sure if the belly pain is due to hunger or what. I know she is hungry because she tells me she is, but she just can't stomach more than chicken noodle soup broth, a few sips of sprite and cupcake icing. One of dad's sisters, Granny and a cousin and her boyfriend brought over some cupcakes yesterday morning along with a few jelly biscuits. The only thing Summer touched was the icing, but that IS something! It was nice of them to come visit and made the morning pass more quickly. My sister came in the afternoon and was going to spend the night with Summer, but Summer awoke from a nap, vomited and started crying for me. My sister called me and I came back to the hospital where I was needed. They said she looked so much better after I got there. It is amazing what a mommy's touch will do. My sister still stayed the night with us and is in the bed with Summer now. I left the room to blog so they could get a little more rest without having to hear me typing.

My mom's sister came on Friday night to give me a break. I was surprised Summer agreed to stay with her since we don't see her very often, but she did. They had a good time and when I returned Summer's long nails were a pretty pink, just like my aunts. :) My aunt brought her a little bear wearing scrubs and a mask (like Summer has to wear sometimes). Yesterday, Summer asked me where the bear's port was so I had to draw one on him with a pen. LOL

I am not sure when we will be going home. Maybe tomorrow or Tuesday, but I wish it was today. We were supposed to go to Lake Winnie with Lana's Love today, but it looks like we are going to miss it. I think that they are waiting on her to start eating again before she can go home. I SOOOOOOOOOOO hope that is today, but I know it is all in God's time, not mine.

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.

It's that time again!

Looks like we are going to be admitted to hospital today. When we got here, her fever was 101.2, orally. When I took it this morning at home it was 99.4, auxiliary. I had a feeling we were going to be staying after the blood, so I brought the suitcase along with us. Good thing for a mother's intuition.

She has vomited 5 times since yesterday evening. She is hungry, but can't eat. She woke up at 6:10 this morning saying she was hungry. Daddy said to try to give her peanut butter, but the thought of that must have turned her stomach because she got sick instead of eating. Mostly she has made it to the bathroom, but once the hardwood floors took one for the team. Lucky for me, Daddy cleaned it up.

Poor baby girl has mouth sores too. Hopefully, they will get whatever this is knocked out in the next day or two. Of course, it could also just be the fact that she is neutropenic making her sick. Never know.

We are in for the next few days though. Now we just need to make the best of them.

Light at the end of the day

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

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

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

Logic Works

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

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

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

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

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

11:11

Everyone in the house is asleep but me. We were all dressed and ready to go to church this morning, but when it was time to leave Summer was on the couch asleep. I figured she needs rest because last night I don't think she went to bed until around 1:00 a.m. That was her latest night up ever, at least that I know about. We had so much going on in the house, she just couldn't give all that up and sleep in her bed. She wanted to sleep on her little couch in the living room. So, I agreed, read her two books and tucked her and Teddy in. I went to bed shortly after her only to be awakened by her a few minutes later. Apparently she had to pee and didn't get there for some reason. She actually peed in the floor which is VERY unusual for her. I guess she was so exhausted she didn't want to get up and I don't remember her going to the bathroom before she went to bed anyway. I did get her teeth brushed, but only after telling her she would have to do the mouthwash if we didn't brush them. I guess brushing teeth is better than swishing.

She has vomited about three times this morning. I tried to give her a Benadryl chewable tablet (grape, of course), but it came back up. That is when she drifted off to sleep where she remains now.

We finally got to see Lexie last night. She is actually here sleeping too. We played this morning while Summer and Clint were napping. Summer helped me feed her a bottle briefly, then I turned it over to Pops (????) so we could shower. Summer actually threw up while I was feeding Lexie, but being the big girl she is, she made it to the garbage can. :) After that, she was ready to get her shower over with. First one since Monday.

She was happy to have Ms. Patti to do her port yesterday. She actually wanted her to be the one to put it in when we go next time. :) Usually that happens in the clinic though...unless it is a fever. We will just have to hope she is working that day, should when it comes. I am hoping we make it through next weekend without a trip to the hospital.

It is so sweet to have a baby in the house. I forgot how much they can get into when they first become mobile. So far she has not gone for the fireplace. She did crack one of Summer's Easter eggs (yes, they are still in a basket in my living room) the other day. I heard it was really stinky! Good thing I don't have any enemies. :o I really enjoyed feeding her a jar of baby food this morning, remembering how I used to feed Summer. I can't wait for lunch! LOL She is supposed to go to a birthday party with us today. Summer will hopefully be up for it, but I'm not gonna hold my breath. If she does go, she will have to wear her mask. I don't know how much playing she will do anyway. She had a lot of energy yesterday, but she may have overdone it. Plus, she seems to be nauseous a lot this cycle. :( Can't wait for her counts to go up! Speaking of that, we need to give her a shot. A little behind on this one.....I'll blame it on the late night and everyone but me feeling a little under the weather. Well, may I don't feel so good either....I'm sure the baby will perk me up when she gets up though. What a joy grandchildren are! Just never thought I'd be such a young one.

Knocked out

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

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

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

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

Fevering the day away....

Summer has kept the fever all day. It got higher this afternoon up to 101.3, I think. The nurse just came in and it was 99.7 so that is good. She has been rubbing her eyes all day too so they gave her some Benadryl a couple of hours ago when they did her second dose of Cefepime (the anti-biotic). She is also on some Zophran for her vomiting although she has really only vomited once since we have been here. It can't hurt though! I am hoping she does not wake up at the crack of dawn, but she probably will since she went to bed shortly around 7:30 p.m.

We have had a pretty uneventful day. Spent half of the day in the clinic and the other half in our small (lol) room. We went for a little walk after my mom and Clint left this evening. Summer wanted to meet the "new" kid who also has kidney cancer, but he was in his room so I didn't want to knock. Don't want to scare the new people by being overly friendly. I did talk to his mom a little in the hall and they are still trying to diagnose his kind. He is two years old. It is sad because it is in both his kidneys so I guess that is why they haven't done surgery yet. It is so hard to see the new people come in, but it seems to happen all the time so I am getting used to it. Why, why, why do so many people have cancer these days???? I read somewhere today that 3400 people are diagnosed with cancer in the U.S. everyday. That is so scary. Oh well, only one left in my little family to go and that's me.

Enough unpleasantness. I guess I am going to get off here and try to sleep even though I am not sleepy. If that doesn't work, there is always Spider Solitaire.....

Platelets low, no admission

Yesterday I failed to mention that Summer did not make counts for admission for cycle 3 of chemo. Her platelets were only 69,000 and they needed to be at least 75,000. They did not give her any though because they were not too low overall, just too low for chemo. Her white blood count was 4.5 which kind of surprised me. On Monday it was 9.?. Her ANC was still fine at 2000. So, despite all those numbers being good, chemo was delayed another two days. If we were on a perfect schedule, it would've started Tuesday, but we don't live in a perfect world. If we did, people wouldn't have cancer, among other things.


We go back tomorrow instead of Monday. One Dr. was going to be nice and give us the weekend off, but another wanted to press on with chemo. If my glass was half empty, I would see this as a bad sign: the fact that we have to hurry up and pump her full of these drugs before it comes back. But, I guess that is the reality.


Anyways, my cup is full and runneth over thanks to God. I was thinking just this morning how blessed I am despite it all. A friend reminded me the other day that God does not give us more than we can handle. And it is true. I have learned to deal with the cards I am dealt and just try to make the best of it. And that is how I live. I try to make the best of everyday and just enjoy all that I do have in life (which is a lot). I try to forget about the "what ifs" and focus things I can control. Like my attitude. Thinking positively definitely leads you on a happier path than thinking negatively. Notice I said happier, not perfect. Okay, off the soap box.

Summer threw up this morning around 6:15. She didn't get up until about 9:15 and shortly after that she had some dry heaving. I am not sure what all this is about, but I called the Dr. and they said she may have a virus. I don't think she has a fever although I am on the lookout for a thermometer right now. The main reason I called the Dr. was because her heart was racing so much when she was throwing up. I have noticed it before when she was sick from the chemo and it just made me nervous that maybe her heart is causing her to be sick since it is racing. But, the nurse thinks it is just racing from the vomiting. I hope so. I know they did an EKG before they started chemo to make sure her heart was strong enough for it. So????? Okay, I shouldn't worry, but she is my baby! God please keep her in Your hands!!!


I am going to get off her and go find her. Last time I saw her she was headed off with her fishing pole and her Paw-Paw. Wonder if she is actually practicing casting or if she has moved on to one of Paw-Paws games. Last night at the neighbors she told us she didn't like fishing. She just likes to play with the pole. I still have time to convince her much fun it is. I guess we will go down and feed the fish again in a little bit. I saw a huge one yesterday, about 1'-2' long. I don't think Summer's pole would reel it in. So, I hope we don't catch that one. Plus, I don't want to try to unhook a fish that big. I just love the lake though. We have turtles, squirrels, birds, ducks, geese, and cranes in our back yard. I think I saw a beaver the last time we were here. Thankfully Summer is an outdoorsy girl, as long as it is not too hot and there are no geese attacking us. They have moved on since their last egg was finally stolen/lost. I'm glad to have the dock back although it might be better that Summer is scared to go out there. Luckily, she is not too much of a wanderer. I just have so much to be thankful for I could go on and on all day.


Thank you God!!!