Wednesday, September 30, 2009

Wordless Wednesday





& Summer

Tuesday, September 29, 2009

Angel food cake

Summer finally convinced me to make another cake. I finished off the last piece of the one I made for Sunday dinner this morning for breakfast. Initially, I said, "No" because I did not want to eat another angel food cake pretty much by myself. :) She was unhappy and informed me we would not be leaving the house for the week. : I told her that wasn't going to work and eventually she forgot about that and ended up eating some blueberries. She finished off the pack I bought last night! We've already been to the fruit stand to get more (two packs this time). Then a couple hours later she asked to make a cake again using pretty please and no whining. Just the sweet, innocent face of an angel looking up at me. That did it. I thought, "It is angel food cake, and she is an angel." She was so excited and wanted to dump the cake mix and water into the bowl. She even ran the mixer for a bit. Then she licked on a beater, loving the sweet batter that has "angels in it."

Last night, I had to go to the store to get blueberries since the produce stand was closed by the time we got out of the clinic. When I got back, Summer bragged that her sister Amanda had time to play with her for a little bit. It was so sweet to here how special that was to her. She and Amanda are 16 years apart and don't spend much time together, but apparently what little time they do means a lot to Summer.

The tent we brought home from the clinic is missing one of the two supporting poles. LOL Still trying to figure out how to rig it up where it will work....

We got our new movie storage cabinet yesterday since we have soooo many movies (especially VHS) and half have been in my bedroom floor for months. Summer's movies alone filled it up. And, we still have a storage bin full of kids movies. Not sure if we should get rid of some of the movies or what, but I am not a big fan of getting rid of stuff that we might use one day. We need to go through all of her toys and get rid of some of them, but they are all still in such good condition that it doesn't seem like we should. But, we are running out of room in her room and Christmas is coming up. I've got most of her shopping done already. I hope. :p

The lady at the fruit stand gave Summer a peanut and caramel covered apple. We waited until we got home to try it. She ate a few bites and decided she didn't like at which time I took it and devoured it. I guess it was good. :) She also tried a peanut butter and banana sandwich today. After taking a bite of mine, she said, "Yuck." I just kept eating. Then she said she wanted me to make her one and she ate half. I guess the "yuck" was just her trying to be cool or contrary or whatever. I just love trying to figure out kids. I have found what works best in getting the behavior I want is not reacting to the behavior I don't particularly approve of. When the bad thing isn't acknowledged, it is seldom repeated. At least with Summer. I could've swore she said something naughty today, but I may have been hearing things because I couldn't get it out of her again. Of course, I didn't say "did you say ---?" Oh my, I do hope she turns out right.

Monday, September 28, 2009

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.

Friday, September 25, 2009

Home with a new blog look

I am loving my new blog layout that Kelly did for me. Thank you!!! Again, the perks... :p

We are home from the hospital. She had been fever free and on antibiotics for over 48 hours. I am not sure we are out of the water and do see us possibly having to go in later this weekend. But, hopefully God will smile on us and give us a few days reprieve at least. Not going to hold my breath though cause I'm sure we'd be back in before I ran out if I did. I am so thankful she didn't keep running a fever once we were in the hospital. PTL! She really just had one the first night we were there. But, they have to give her those antibiotics just to be safe. When she has no white counts, she can't fight any infection no matter how small. I think her ANC was 20 or 40 today (WBC .2 or .4 I assume). Not sure what her hemoglobin and platelets were because I missed the doctor today. I was at home doing my new P90X dvd with Clint. Can you say push-ups and pull-ups? Yeah, there are kinds I never heard of before!!! Anyway, by the time I got back to the hospital, she was already deaccessed and ready to go. Well, except for her shots. We had to wait about an hour for those. CRAZY! I don't know why they didn't have them ready, but apparently it is hard to get labels from the pharmacy to the clinic where the shots are actually drawn up. Summer was ready and didn't want to wait. We finally gathered up all our stuff and headed to the nurses station. Then I saw two nurses from the clinic headed there too. Perfect timing! We grabbed the shots and headed to the car. We never can get out of that place fast enough. NOT our ideal vacation spot!!!

Summer is ditching me for the weekend to spend time with cousins and grandparents. Can't say I blame her, but I do miss her already. She's taking a nap and getting all rested up for the camp out tonight. Kind of wish I was going to be there, but I've actually got other camping plans I think. Who knows? So many options. I'm kind of sad it will be me deciding what we end up doing. Can you say pressure?! But, I gotta take the bull by its horns and steer it. Man, I'm feeling kind of corny tonight. Hope that means its going to be a good one!

Wednesday, September 23, 2009

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.


Monday, September 21, 2009

Milking the last of her counts

This weekend was full of activities for us. I found out that the calendar Summer will be in is not actually a childhood cancer calendar per say, but it will feature several survivors. Clint and Summer are supposed to be on the month of June for father's day. I think Summer will be on another month by herself too, but I'm not sure which one. She is also in group pictures with other kids. All of the proceeds raised from the calendars will go to the American Cancer Society. I think they are only selling them in Trenton. So, if you want one, let me know.

We also went to a cancer reception which was fun. They had door prizes and Summer got a camera and a Hannah Montana game. It is pretty fun although we don't know many of the trivia questions. Half of the questions are dancing or singing, which allows for a lot of fun. "Awesome!", "Rock On!!!", high fives, smiles and giggles are all part of the game. Well, at our house anyway. Can't wait to get her together with Willow so they can play. I bet Willow will actually know the questions though. Although Summer likes Hannah Montana, she would much rather watch cartoons on Noggin or Sprout. She's livin' the big life right now with more cartoons than we've ever had. A few weeks ago, we had only one cartoon channel. Now, we have at least 10 channels. Can you say cartoon heaven (or better overload)? I used to think I would never let my kid sit in front of the TV all day, but now with low counts and the inability to go anywhere, I see no reason not to let her spend hours in front of it. She does play too so I am not too worried, but when she doesn't feel good it is nice to have a variety of "good" cartoons (wholesome).

On Sunday, we went to a hot air balloon fair which did NOT have hot air balloons because of all the rain we received over the weekend. On the way there, Summer pointed out that it wasn't hot out side like hot air balloons would need. LOL I was wondering just how the hot air balloons would do in the rain. I guess they don't. Bummer. She didn't seem to mind the lack of balloons like I know my sister and I did. They did have inflatables which Summer and her cousins all enjoyed. Even Auntie Erin and I got on a slide. Summer was given a cotton candy for "advertisement" the guy said. Oh the perks of having a kid with cancer! Of course, I'd rather have myself a healthy, cancer-free kid, but I'm not in control here.

Sunday night was the Taste of Hamilton Place. If you are local to Chattanooga and did not go, you missed out. It was awesome with yummy food to eat everywhere from local restaurants. I was stuffed half way through. I heard it was better than Taste of Chattanooga although I've never been to it. I encourage you all to attend next year, if not for the awesome food, but to also support your ONLY local children's hospital. Where would you take your kids/grandchildren without it? I know a lot of local money is sent out of town to St. Jude and there is nothing wrong with that. But, they wouldn't even take Summer. I don't know where we would be without T.C. Thompson, but it wouldn't be in Chattanooga. Summer was featured on one of the 8 foot banners as were several other local cancer kids. She was also in a "3 words" video that played all night. It was the first time we had seen it and she loved it. She was famous for that night and may be again because it has been submitted to GMA. She also met "a real princess," Miss Tennessee and got an autographed picture that she wants to put in a frame. :p

Yesterday, we went to the clinic for counts and Vincristine. She gets another does of it next week and then we are officially done with cycle 7 chemo. Her counts are dropping this week. White count was .7 yesterday and her ANC was 200. Hemoglobin is 8.6 she needs blood, but they are waiting until Thursday to give it to her. They went ahead and cross&typed her yesterday. Her platelets were in the 50,000's so not too bad yet. We took a chance and went to Lexie's birthday party last night hoping no one was sick or was carrying any germs. She wore her mask most of the time, but she did have to eat so it came off some. We washed her hands several times while we were there though and she got a shower as soon as we got home. All the clothes went into the washing machine and I Lysoled everything I could think of.

She seems to still be feeling good although she has been saying her belly hurts really, really bad. I assume this means she feels like she is going to throw up. She has been taking Zophran every 8 hours to keep the nausea at bay and I think it is working pretty well. She is still eating, but not as much. She will ask for something and only eat a few bites, but that is better than no bites. We are swishing a few times a day to hopefully keep the mouth sores to a minimum. She isn't complaining of any yet, but she never really does until they are really bad. I am still able to brush her teeth so that is good. I think we are homeward bound from here until the counts recover or she gets a fever. Then, we get a little "vacation" from home. That's one vacation I never look forward to though.


Saturday, September 19, 2009

Still going strong!

Summer has still been feeling pretty good the past few days. Yesterday, we ran all over town, including making a stop at a pet store. She went in looking for something other than a cat or dog since her daddy is allergic to both (or so he says....). It was funny to me that she put that together all by herself - finding another kind of animal to have. :) I've said it before, she is a smart girl! At the end of our visit, we came across some little white mice. You know, the kind with the beady, red eyes. That was what she said she wanted when she is finished up with her chemo. I had already told her no pets until we are done because we can't take them to the hospital so there will be no one to take care of them while we are gone. She wasn't too happy about that at first because she IS an immediate gratification kind of girl, but she did accept it with out whining. I do want to mention that we do have one pet. A male beta, Cobby III, who is okay without eating for a week or so at a time. I did think about buying another small fish while we were at the store and putting him in with Cobby III to see what would happen, but I didn't want to freak Summer out should Cobby III violently attach the other fish. Would be interesting to watch though....

Today, we have another full day, and I hope she is up to it. She has a photo shoot for a childhood cancer calendar that my hometown (with the support of the American Cancer Society, I think) is putting together. I never in all my life imagined I would have a poster kid for childhood cancer, but I do. Never thought I'd have a bald headed little girl, fighting every day for her life (but not really knowing it). Never thought I'd love anyone as much as I love her. Well, maybe in my fairytale dreams. Never really imagined myself as a stay at home mom. Always thought I'd grow up to earn the big bucks. But, I love staying at home with her and wouldn't trade it for any amount of money right now. Never thought I'd be attending a cancer survivor reception, but we are supposed to today. Despite it all, I still feel blessed. Life isn't always what I think it will be. Few things are. But, I'm making the best of every thing that I can.

Summer's counts should start plummeting over the next few days. Hope her spirits remain lifted as she is such a joy to be around when they are!!! She's my little SuperGirl!

Thursday, September 17, 2009

Life Lessons

Today I taught Summer how to remember her right from her left (I hope). Sometimes gets them right, but I think it is pure luck. She writes with both hands, so I can't just say your right hand is the hand you write with. I also can't use the L is on the left hand because your thumb and finger make a L. They both look like L's and I think she might flip her letters sometimes anyway. She starts writing letters usually where you would end your stroke. Anyways, I finally figured out how to get her to remember. I told her her port is on the left. The right is the side with no port. Her port is something she is VERY aware of! I never would've thought I'd be using that to get her to remember, but it just might work...if she can remember left = port. :p

We worked with some rhyming cards today, and I was trying to get her to actually look at the word and not the picture. Yeah right, I know. That's why they put the pictures on there. :) But, I am trying to get her familiar with the letters and how they form words. These cards actually have lower case letters which is not her strong case. She has trouble with a few of them, namely r, k, h, & y. It is fun to see her learn and grow, but it means a little more of my "little" girl is going away. She has grown so fast and it has been a pleasure watching her, but I am not ready for her to grow up. Not at all. I keep saying we are going to start learning to write, but I haven't actually got it scheduled into our day yet. Maybe after her treatments, we will be able to set aside specific times for it. But for now, every day is unknown as to how she we will feel and where we will be. I guess there is no need to rush it anyway. She did work on S this week with me and also my mom. She wants to start with her name which is probably the best, then we will do the rest of the alphabet. Right now I think visual recognition is good enough. Plus I am already working on phonics so she can sound out the letters she sees and read the word. Yesterday, she told me that "rrrr" wasn't an R though. Oh yes, she already thinks she knows everything. Of course, I think also she just likes to challenge what I say and see if she can get away with it. Kids are so fun.

She is still feeling good, dressing herself and playing independently with her dolls. I have noticed her nurturing her stuffed animals and dolls more lately. I remember when it was me playing dolls. My sister and I used to play with them together. Good times. Summer doesn't have a sibling to play with though. I'm not real sure how I feel about that, but I am pretty sure I'm not going to have another. Too scared about losing the two people already in my little family to add another one to the heartache. I can't wait until Summer is healthy again and we can get her back in some classes so she can socialize with other kids. Thankfully, she does have several friends her age to have play dates with.

We are both glad to be home. I am so thankful she is still feeling pretty good after all the chemo this week. Hope it holds out through the weekend because there are quite a few things we have planned to do. She's got another photo shoot this weekend for a calendar that is featuring kids with cancer. We also have a cancer survivor dinner party to attend. Next week is Lexie's 1st birthday and I really hope she is feeling up to going to it. I am glad it is outdoors because that means we can go even if her counts are not so good. Keep on praying and sending positive thoughts our way! They are working.

Tuesday, September 15, 2009

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


Monday, September 14, 2009

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.

Two ways to be charitable

For anyone interested, there is a banner of with Summer and Teddy's picture hanging on Chattanooga's Walnut Street Bridge from now until Sunday, September 20th. So put on your walking shoes and head to the bridge for a nice walk. There are 7 other pics of kids who also receive treatment locally at the clinic and T.C. Thompson Children's Hospital. The banners are there to raise awareness for Childhood Cancer and to also hopefully raise money for our local children's hospital.

Also, I have failed to mention on my blog, I think, that September is Childhood Cancer Awareness Month. Not sure how I could've made it half way through September without mentioning it, but I'll blame it on Facebook. Many local cancer moms are selling gold bows/ribbons (for your home or office door) for $7.00 or a gold bow car magnet for $10.00. If you want one, you can get in touch with me or go to www.erlanger.org/curekidscancer (this will be good for all of you out of towners who want a flashy new magnet for your car). :) The money we raise will go to the hematology and oncology clinic where Summer is treated. A good cause for sure!!!!

For all you Chattanoogans.....


Taste of Hamilton place benefiting our cancer kids here in Chattanooga is next Sunday (the 20th) See below....

I wanted to be sure you knew about Taste of Hamilton Place on September 20th. (You can buy advance tickets at a discount online at www.tasteofhamiltonplace.com ) This is the first Taste of Hamilton Place event, and it promises to be a delicious way to help the kids at T.C. Thompson Children's Hospital! We have more than 25 area restaurants participating, and one price gets you samplings of a huge variety of creations from ribs and jambalaya to gourmet cupcakes! Macaroni Grill, Bonefish, Big River, Abuelo's and many more will be there, and all proceeds benefit the Children's Cancer Center at T.C. Thompson Children's Hospital. More than 50 children will be diagnosed with cancer in the Chattanooga region this year, and this world-class center allows them to be treated right here at home without leaving their support network of family and friends. Taste of Hamilton Place is a great way to spend a fun dinner with the whole family for a great cause. We'll have lots of entertainment, and Stefanie Whittler, Miss Tennessee 2009, will be singing and signing autographs. Please pass the word on and I hope to see you there! To buy tickets or for more information you can call the foundation offices at 778- 6600 or go to http://www.tasteofhamiltonplace.com/

I should have lots of pics to share on Wednesday, including a few of the bridge. Stay tuned.

Friday, September 11, 2009

Beautiful, healthy, happy

That's what I see when I look at my little girl. I'm sure there are many more words I could use to describe her. Adorable, silly, cute....ok, I'll stop there. She's dressed as a princess today wearing the dress my niece wore as the flower girl in my wedding. Simply adorable. I couldn't help but to think this could be her only wedding dress when I looked at her snapping pics like a mad woman. She just ran up to me and said, "Mom, I look more beautiful." Oh this little girl just melts my heart. She wants to wear the dress all day, and I don't really see the problem in letting her. I don't foresee anyone wearing the dress again so what are a few more stains and snags going to hurt. Nothing.

This morning she got up and I put on some cartoons, asked her if she was hungry (to which she replied no) and then went back to bed. Have I ever mentioned how lucky I am to have a well behaved child who I know will not reek havoc on the house should I not be watching over her? Well, I am. When I woke up, she was at the coffee table with two slices of bread laid side by side, a jar of peanut butter and a jar of jelly. I asked her what she was doing and she said she was going to try to make her sandwich all by herself. Of course, she couldn't get the lids off the jars so she didn't get very far. It was cute. She had also opened a poptart and taken a few bites out of it. I am happy to see her regaining some of her independence.

Yesterday, she caught her first fish. Well, she wasn't actually manning her fishing pole when it happened, but she did help reel it in. She had been fishing for a good ten to fifteen minutes and had given up after loosing many worms to the fish. Her friend Katie also caught a fish at the same time. The girls were a little overwhelmed to have two fish to deal with at once. I ran up to the house to get the camera so we could capture the moment. Summer didn't really want anything to do with the fish once we got it out of the water and would barely even stand beside it. I don't think Katie touched her fish either. Thank goodness for mommies and daddies who can take care of the icky parts like putting on the worms and taking the fish off the hooks. I'll be sure to put up a pic next week. I think I am going to try to do a picture update every other week on Wednesdays. Not sure it will actually happen, but it does sound like a good goal. I know everyone loves the pics and this is the closest thing I have to a picture album right now.

I guess I'm going to get off here and enjoy the rest and relaxation that lake house brings. Summer is definitely enjoying herself here. We are blessed to have so much in life.

Wednesday, September 9, 2009

Days full of laughter

The past few days have been wonderful. Lots of laughter going on between Summer and myself. She really likes to play chase, and I have found it to be pretty fun myself. Just be careful if you are running on the hardwood floors in socks! We haven't really played that yet today (although she has asked a few times), but we did go down to the water in front of the aquarium and play for a while. Lots of jumping and splashing and laughing....FUN!!! It is so good to see her looking healthy and enjoying life to its fullest like a little girl should.

Yesterday, we were cooking something and she was either eating Parmesan cheese or angel food cake batter and she said, "It keeps getting gooder and gooder." Of course, I took the time to try to teach her it was better and better. We'll see if it sticks. In addition to the angel food cake, we made home made lasagna. She helped me stir up the eggs and cheese and also put the noodles into the pan when it was time. I just love spending time like that together. I hope she gets to grow up and use these cooking skills she is learning. :***( I don't usually think those hard, sad thoughts, but sometimes when life is feeling good I wonder if it will last.

She just went down for a nap, and I think Lexie may be on the way here. It will be fun to play with a baby for a while. I may never get another of my own, so I gotta enjoy the grandchild. It is still hard for me to believe I am a grandmother (thanks to my stepdaughter, Amanda). Lexie is a doll and I wouldn't trade her for any other. I still haven't picked out an official grandma name, but I think we are leaning towards Lolly right now. Granny just doesn't fit although I've been called it plenty of times by envious friends without grandchildren of their own. LOL Okay, they were probably not so jealous.

I am hoping the rest of the week continues with us all feeling healthy and happy. I am so thankful we were blessed with this extra week of her feeling good. I don't think I could ever get tired of that.

Tuesday, September 8, 2009

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.


Saturday, September 5, 2009

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.