Scan day

Today is a scan day so we are hanging out in the clinic waiting to be deaccessed. Summer was very upset when she came out of anesthesia. She didn't sleep long after the MRI which was a bad thing because she was super ill and crying. Her throat and head were bothering her. Plus her mouth was "sticky" and the apple juice they gave her did not help any. They ended up giving her a small amount of morphine for her head because they couldn't get the ibuprofen quick enough. It seems to have done the trick. She was unable to eat this morning which was not fun either, but she is munching on chips and peanut butter crackers as she watches Barney Round and Round We Go now. She knows what Barney movies they have in the clinic and specifically requested that one. Hopefully, we will get some preliminary MRI results before we leave, but I have a good feeling so I am not going to worry at all.

I've scored some last minute tickets to the Justin Bieber concert in Nashville tomorrow night. I hope it will be as fun and exciting for Summer as I anticipate it will be. When I told her we were going, she said she'd like to go but that Hannah Montana sings better than anyone. I really hope I can find another kid to go with us, but it may just be me her and her daddy. It was amazing the tickets even popped up because a few weeks ago I was thinking I would love to take her to one of his concerts, but I never really looked for tickets. Lucky, as usual, they appeared on Facebook today. It may end up interfering with preschool open house on Thursday, but only if we spend the night in Nashville. Either way, I am super excited for us.

As for her counts, they are good. Her kidney function is good. She weighed 40 pounds and was 40 1/2 inches tall. Blood pressure was also good. I'm so thankful for my healthy little girl. Just to think at one point in time I had doubts that she would make it, and she is beating those 50/50 odds. Praise God for watching over my little girl and letting her recover from cancer. I know not all parents are so lucky so I don't take any days for granted. Together Summer and I make the most of them all. Now bring on the concert!!!

Whirling into the weekend

I have failed to give an update on Summer's MRI that she had earlier this week. So, as you can probably guess, things looked great. Now if we can just make it through next week's ct scan with the same news life will continue to be good. I mentioned her eyes being sensitive to light to the Dr., but I didn't get a definite answer or direction from him. I guess I will take her to an optometrist and see what they think.

I have decided that Summer and I will go to the funeral home together for visitation rather than the funeral. It is just going to be too sad and it is quite a ways away from where we live so it would be hard to do both days. She told me that she wishes we could see him one more time. I told her we might get to at the funeral home. But, she said she meant his whole body. I told her one day in heaven we will get to see him. They were never what I would call close, but a familiar face is a familiar face and when you know their name you have some sort of bond.

Playgym was a blast this morning as the kids explored emotions. Summer definitely knows how to show her emotions, although I am trying to curb some of her actions into ones that are acceptable. For instance, when she is mad, it is NOT OK to hit the person or be destructive. Also, it is OK to be sad, but whining is not the answer to anything. But, at the same time, I want to let her express her emotions. Man, this mommy stuff is fun. Just before our shower, we listened to Summer's Song of Love which she still loves. During the song, she directed me to dance with different faces - angry, sad, happy. It was cute to see her follow up the class with some of the things we talked about.

We also made a book run at the library since we had some books that were due back. I can't wait to read the ones we picked out to her. I really think she might start reading at some point this year. She is learning small words right now and how to sound out the letters that she sees. It is so exciting for me to experience all of this with her, although it may seem cheesy to some. Some people would rather just let someone else do all of this fun stuff for them or are too busy to even care. I know some people can't help it and have to work, but it is really sad to me that some people just don't want to put that much effort into their kids. I really feel so blessed to be able to nurture and cultivate her as she grows up. Of course, only time will tell if it was worth it. But, right now I think it is. The days go by fast as we run from here to there experiencing all we can, but it is fun and we do have some down time. Maybe not much, but I feel like life is so short. You never know when you will have your last day on this earth. So live your life to the fullest and make your dreams come true! That's my motto anyway.

A night at the circus

No Flash Mom! She closes her eyes on purpose. Don't mind that lazy eye, just look at the cute baby. What is up with that anyway? Darn it! Finally got one with her eyes open!Last night, we went to the Ringling Brothers' Circus with the Lynch's, Lippard's & Anchondo's. It was fun; much better than last year. Of course, my spoiled little one wanted a souvenir before the circus even started. LOL For the record, I did make her wait until after the circus had started. We got there early and watched the pre-show. We didn't go down to the ring side, but it was still fun. Once the circus started, the lights bothered Summer's eyes. I think her eyes must be really sensitive to light. I remember when she was on chemo, they were. I'm not sure if that is a long-term side effect from the chemo she had, but none of the other kids seemed to be bothered by it. The kids all seemed to enjoy it. Amanda called while we were there to see if Lexie could spend the night. Of course, I'll never refuse that if I'm free. :) So, Clint brought her with him. At first, she was still half asleep, but after a while, she clapped and smiled with everyone else. Summer was ready to go before it was over. She wanted to get home and play with her new tiger, which she named White & Black, that came in a pink purse. She said, "I'm really sleepy." I knew she wasn't because she had a good nap. Some of the last acts did manage to gather some of her attention, but she was definitely ready to go when it was over.

Earlier this week we made a trip to Chuck E. Cheese with my Aunt Nean and cousins Katie and Alex. Summer really enjoyed them and didn't even drag me all over the place. She let me sit and talk to my aunt mostly which was a nice surprise. Usually, we are attached at the hip.

Yesterday, we had to go to the doctor with her daddy for his scan. She was pretty well behaved, coloring and eating snacks. We found out that nothing has changed so they consider him to have a stable disease. He will be getting some pills to help keep it in check. So, overall that was good news, but not great since the IL-2 didn't seem to do anything.

Summer is already asking for ice cream today. No, not one of the ice cream sandwiches that we have in the freezer. She wants to go to the ice cream shop. Oh my, what did they start with that all day ice cream shop at the village. :D I am hoping to avoid a trip for ice cream altogether because I don't need anymore. But, we shall see.

A harsh dose of reality

Yesterday, we were in doctors' offices all day long. We got the results of Clint's scan from his urologist. Then we were forwarded to an oncologist and finally the biopsy doctor. It is amazing how quickly they get you in around here. One doctor phoned the next and so on and they were all amazingly available. Crazy. Summer was with us and we did not bring Teddy. Mistake. She wanted to bring her new care and cure snow leopard, Barbie, with her so she could play doctor. While that was entertaining, when she was tired of sitting around, Teddy was what she wanted. You can be sure we won't make that mistake again. Of course, we never expected to be in the doctor's office from 9:00 to 5:00 yesterday. Not sure who we were kidding, but the reality was unleashed and now we face another bout with cancer. They are going to biopsy one of the two lymph nodes today. Then next week we will meet with Dr. Gandhi and decide what the next course of treatment will be. They do not want to surgically removed the lymph nodes. They say that won't fixing anything. Needless to say, we have a long road ahead of us.

The rest of the week has been great. We all went to the playground. Summer and I went Christmas shopping for her Daddy and Lexie. I was able to sneak a few things in the buggy for her stocking. Make-A-Wish came and talked to Summer about her wish. Her wish makers, C'Na and Annie, brought her the official Make-A-Wish Barbie. It was out of the box before they left. I gave one of the wish makers a copy of her poster for the radioathon we just had. She asked Summer to sign it and she did. I didn't think she would be able to because the only letter we've ever really worked on more than tracing is a S. Annie took a picture of it with her iPhone and sent it to me. The letters are in reverse order, but I think it is a pretty darn good job considering it is her 1st signature and the pen wouldn't work very good on the shiny paper.

She made counts!

Tomorrow Summer starts cycle 8 of chemo. HER FINAL CYCLE!!! It is quite exciting to be at the end, but nerve racking too. She'll have a scan in a month and then every three months after that. All of the "big" oncology rooms are closed right now because of some renovations going on in the floor above them. So, we are in a part of of the floor we have never been in before. It is only nice because it is close to the parent kitchen. Unlike the big rooms, regular hospital rooms do not come with your own little fridge. So it is good be right across the hall. Still, there will be bathroom problems I'm sure. Getting there can be quite frustrating when you have to tote a three year old and their IV pole through a small space.

There is a Last Chemo sign on Summer's hospital door (room 329). We are both excited to have this underway although she did put up quite a fuss for the finger prick and port accessing today. She's never gotten used to them.

Please pray and send lots of positive thoughts our way the next few days as she gets ICE (her chemo regimen). Last time she hallucinated and lost control of her body and would NOT go to sleep. I hope the chemo does not have any long lasting effects on her body. I am so scared of the long term side effects she is yet to experience, but I'm not going into that right now. I gotta get back to my baby. Memaw stopped by for a few minutes so I ran home to change. Have I mentioned that Memaw rocks? Because she is the bomb!!!

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.

Counts low, but spirits up!

Summer had an appt. this morning at the clinic for a possible admission for cycle #7. Her platelets are still too low, 38,000, so we have the rest of the week off. WOOOOOO-HOOOOOO!!!!!!! Another week of feeling good is always welcomed around here. She is up to 33.3 pounds. Hemoglobin was 11 and white blood count was 1.9, both are good numbers. Her ANC is 500 which I thought was low, but the doctor said she can go fun places. We'll have to see about that. Maybe fun outdoor places or places where we know everyone is healthy. I'm not so sure I'm going to spring for Chuck E. Cheese though. It has already crossed my mind that we could go as soon as they open and I could take a can of Lysol with us. I know. Shame on me, but I have already admitted I'm not the homebody type. I like to go, go, go and so does Summer. I see so much of myself in her it is crazy. She uses the same language as me, and no I don't mean English. We use words like crazy, insane, funky. Oh my, what am I teaching my daughter? Hopefully to have a carefree and fun spirit, at least that is my intention. I sure don't want to raise a sour puss!

We had a BIG hug on Sunday when we were reunited after a three day vacation from each other. It was awesome. I didn't think she was going to let go, and it felt so good I didn't want to let go either. I just love those moments. She surprised me with a bird house she had painted for me. It shaped like a church and is pink and purple. I'll have to take some pics when I get it to its place in this home. It's still in the bag and need a clear coat to seal the paint. I have a feeling it is going to end up outside on the balcony.

Yesterday, we had a cookout up at the lake with some friends. Summer played really good with the eleven year old girl, Katie, that was there. It was nice because I got to grill in peace. :) After lunch, the girls and I played in the hot tub which was like pool water since we had just filled it up with the water hose. I was chased through the yard with buckets full of cold water. Then Summer reminded us we weren't playing with her. LOL I think she enjoyed watching though. She didn't want the bucket dumped on her head that was for sure. However, Katie did dump it on her a few times. She took them pretty good and didn't have a major melt down so I didn't reprimand Katie. For dinner, the girls helped me make home made pizzas. Katie's pizza had very little sauce and a lot of cheese. Summer's had lots of sauce and just a little cheese. I think Summer's was preferred by everyone, but Katie. I guess she's going to be a "good cooker" too when she grows up. :p Last night, she had a major melt down at bed time. She didn't want to stay there, but would have preferred we returned to the condo. Not sure why it was such a big deal, but we didn't cave and stayed at the lake. It was nice being out there, no temptations to leave the house except to walk down to see the neighbors. We may go out there again later this week. I hope she is cool with that. LOL

I foresee a nap in her future today. She got up just after six this morning. Plus, she is saying the carrots and broccoli in her pasta don't taste good. I only put in a few and told her she had to eat them which she agreed to do after she finished the noodles. Maybe I should've just fed her myself then I could have snuck them in with bites of pasta. Instead, I am eating lunch at the computer trying to get this blog updated. I think it was worth it. Why is it though that when I tell her she has to eat them or take a nap she says, "My belly hurts. I need my Teddy. I'm tired." Vegetable bites now in with only a few tears shed. Noodles and chicken refilled. We'll see if she eats the one carrot I put in there under it all. (nope!)

Not sure what the week ahead holds, but hopefully some times with friends. Lets hope everyone stays healthy so that can happen. I also foresee lots of cartoons now that we have them 24/7. Yay for satellite TV! I am also going to see about getting "The Sound of Music" for us to watch. I think Summer might enjoy it...if she gives it a chance. I'll just have to tell her it is a "kid" movie.

Oh yeah, the scan showed her heart is 55%. Not sure what that means, but it means it is not too damaged. I did find out that number is equal to 30% on the echo cardiogram. Not much clearer, huh? I'm not very good (or interested) in asking the hard questions or getting specific details. The doctor didn't seem very concerned so I took that as a good sign. I know they are going to use the heart protectant and give the full dose of Doxyrubicin. If her counts recoup, cycle #7 will start next Tuesday. Don't hold your breath though. If I've learned anything over the past few months, it is that the future is never certain.

She's a camper!

Last night, Summer camped out with Memaw and Nanny in a camper on their property. They had a campfire and roasted hot dogs and marshmallows. It sounded like they had a really good time when I called and talked to Summer this morning. She asked me if I would go camping with them sometime. :) I think they might go canoeing today.

Yesterday was her Muga scan. We do not have the results yet, but should get them on Tuesday when we go in for cycle #7. I am curious to find out the state her heart is in, but worried at the same time. I'm not sure how comfortable I'm going to feel with her getting the Doxyrubicin even if they think her heart is strong enough for it. I just don't want to see her suffer any more than she already is. I will just put it all in God's hand though because He is in control anyway. Her port is not getting a good blood return thanks to a nurse who didn't use the right heparin before she deaccessed her. They tried putting something in it yesterday to unclog it, but it didn't work. I think they will try again on Tuesday. I really hope they do not have to replace it and so far they are not talking about it, but they do have to get blood out of it so if it doesn't start working.....

I can't wait to get back to her tomorrow. I sure do miss my little girl!!! Three nights away is plenty right now although a week on a tropical island does sound pretty tempting.