Monday, November 30, 2009

Back in the swing of things

Summer has her no more chemo party at the clinic this afternoon. This is actually the first Monday in probably six months or so that we have not had an actual appointment at the clinic or been in the hospital. As fate would have it, we ended up having to go anyway so Summer can get her cake. It isn't until 1:00 this afternoon though.

We just showered and she is making her "dolly" in the floor with her clothes. She already tried on the shirt I picked out (this hasn't happened in a while), but insisted on taking it off to make her dolly before putting on anything else. I don't know what is up with the dolly, but I'm going to let it go. She is becoming more independent at playing. Her imagination soars. Yesterday, we were at my aunt's house who has a rather hissy cat. So, Summer wanted to lay on the couch pretending she was a cat and have me come up and pet her. Then she would wake up and hiss at me and chase me through the house. She even got my Granny and Sandra to play along a few times. I even chased my Granny around like I was a hissy cat. I must say I've never done that with her, even when I was a kid. The only time she was chasing me was with a fly swatter....and I was faster than her. :) It was so much fun. And, a pretty good workout too!

We've developed sort of a night time routine. At some point it will be time for "goodnight games." We will play Pretty, Pretty Princess or Go Fish or Crazy Eights or Old Hare (like old maid). She likes to play and would never be happy with just one game. She just told me Hannah Montana was her favorite game still, but the last time we tried to play my CD player wouldn't work. :( NOT. Sometimes we also play Hungry, Hungry Hippo or Don't Spill the Beans. After that we will brush our teeth and usually read a few books. Of course, we don't limit game playing to night time. I don't think she would go for that.

She loved helping me put the tree up on Saturday. We had a little talk about how some of the ornaments can break easily on the hard floor so we have to be careful. That put a little fear in her and she was careful with all the ornaments. I don't think we broke any this year. However, all three of the stocking holders managed to get broken (and repaired) at some point in the day. First, Summer knocked off one trying to hang a stocking on it. Two seconds later, the second one went. I didn't make too much of a fuss of it because the look on her face was enough to know she was upset by what she had done. Anyways, the day was spent decorating and finding old treasures. When we came to my Memaw's old Nativity, Summer wanted to set it out. It was cute. She tried to stuff all the animals in the one stall in the stable. Then we went over the Christmas story again and moved them around. Good times. That night before bed we read a few Christmas books, one of which Summer's Nona had given her which tells the Christmas story too.

Summer especially likes to wrap presents. There are still no presents under the tree for her. I am trying to decide how to do it. I have accumulated quite a few little gifts for her throughout the year. Maybe the 12 days of Christmas will be possible again if I can get them all wrapped and organized. That's hard to do when she is here though because if she sees the wrapping paper, she is stopping by to help. Tape is usually her job. I did let her wrap her Paw-Paw's present by herself. Well, I did the tape, but she did all the folding of the paper. There is one more thing I have to get because she is asking Santa for a magnetic dart board like we saw at Learning Express. I hope I can find a coupon like I had the day we saw it. I just couldn't buy it then though with her with me. Plus, we were on the bike. There is no sneaking there.

We had a "normal" breakfast today. All three of us had cereal. I can't remember the last time that happened. Summer told me she liked the milk and asked what flavor it was. I told her skim. :) She is eating so good and gaining weight too from the looks of her. Her hair is growing back. She has blonde fuzz all over her head although you can't really feel it yet. Her eyelashes are longer and will probably be longer than mine by the end of January. That's just not fair! She is a bundle of energy, always wanting to play. Last night, I let her run me across the bridge. She would pull my hand while I jogged on a small ledge and then I would have to do hers. We ran into some of our neighbors who probably thought it was quite a sight to see. Then she asked me to pick her up and run which I did. I had a hard time making it to the end, but she wouldn't give up on me. :) She's such a blessing and an inspiration to me. I know now is the time to live life to the fullest. There is no reason to wait. Oh, what an adventure this life is....and a fun one with her by my side.

Saturday, November 28, 2009

November memories

Summer's last visit to the hospital. We did her nails with the kit one of her angels sent her.
Farm animals are a fun sight for these three.
The girls are dressed similar with no planning on our parts.
My little rockstar. She only wore the wig for the pic because it was itchy.
Bubbles never grow old.
I just love how she dresses herself.
Headed to the playground with Barbie.
Daddy climbs with Summer.
Baked beans - breakfast of champions.
Still smiling as we wait for Daddy's last dr. visit. Barbie was a good patient too!
Can't have a sleepover without a little jumping on the bed!
They both loved the swings.
The playground at the campground was a hit with the girls.
Summer and Willow hop into the sleigh while shopping in Gatlinburg.
Santa's sleigh is filled with girls.
Mining was fun for the whole family!
Summer's a cute scarecrow.
Willow and Summer roast hot dogs on our camping trip.
Summer enjoys the campfire.
Summer and Willow rock out with their guitars.
Getting the girls to pose at the same time is pretty hard.
Summer's wingspan is short of a hawks.
Sliding makes her happy.
Lexie is just about big enough to really enjoy the playground on her own two feet.
She's excited to put the star on top!
Being her silly self while decorating.
Making a "dolly" with her clothes before she gets dressed. She does this almost every time!
Summer decorated her tree herself.
Bowling was right up her alley!
The bone scan was the last of her scans - all were clear. Praise God!
Her room is all decorated for Christmas.
She's getting so big, but not big enough to get to the top of her dresser.
Summer shows her pictures to her big sister, Amanda.
At the clinic waiting to be called back, building the train tracks is our favorite things to do while we wait.
Summer liked rat puppet at the Creative Discovery Museum.
Chillin' on the couch with Teddy watching cartoons.
Summer pulls Lexie in close for this pic on Thanksgiving.
Climbing trees with Uncle Bradley, Leah & Jonathan.
Today at the carousel. She was telling me she wanted to ride 2 more times.

Wednesday, November 25, 2009

Thankful for my healthy little girl!

We are staying pretty busy around here. Yesterday, we went to the Discovery Museum and playground with my sister and her kids. It was fun. Summer loves to be with her cousins. In fact, they may all be sleeping over at Memaw's on Thanksgiving. I am still undecided right now depending on the health of everyone who will be there. Even though her counts are pretty good and she is feeling great, she is still suceptible to illnesses which could wipe out her white counts very easily. I do NOT want that to happen. I'm happy (and thankful) to be done with her treatment and hospital stays. She only has to go once a month for an antibiotic and port flush for the next six months. Then, I think they will take the port out and will just do finger pricks at monthly check-ups. Not sure how long those will last, but I'd imagine until we are two years off treatment. Scans will be every 3 months. It is nice to not have to go to the clinic once or twice a week anymore. I'm not sure we will miss it like some would.

Summer has quite the social calendar for the month of December. She has 6 engagements just in the first two weeks. Yikes! Of course, that means I have those too. It is so much fun to get to do all this stuff with her and see big smiles all over her face as she gets to participate in these fun activities. I am so thankful she is healthy and able to enjoy life. There was a time when I couldn't see these carefree days ever returning, but not anymore. She is free to be a little girl again and not just a cancer patient being made to feel sick by toxins. Yay! I am so thankful for this.

There are so many things in my life that I am thankful for, but most of all is definitely my healthy little girl. She'll always have my heart.

Monday, November 23, 2009

Onto monthly check-ups

We are in the clinic now getting Summer's monthly dose of pentamidine (an antibiotic). Her counts are good although her white counts are still lagging, but they probably will for 3-6 more months. They are not too low, but ANC is only about 1,000. She is watching Alvin and the chipmunks while we wait for her to be done.

This weekend she got to go to Collinsville with Memaw and Nanny. She really liked it and told my mom she wants me and Aunt Leisa to go next time. She racked up on jewelry and even got a collar with a name tag for Leah. She called it a carnival. I haven't been there since I was a kid, so I don't really remember what it is like. Sounds fun from her description though.

Yesterday, she told me she wants to be an animal doctor when she grows up. I told her it was called a veterinarian which she surprised me by being able to say it back to me. I asked her if she wanted to be a doctor for cats and dogs or horses and cows and she said neither. She wants to doctor toys. Hopefully, she will change her mind and treat real animals. :)

I will be posting a big picture update later this week. Stay tuned.

Thursday, November 19, 2009

Another first: BOWLING

Last night, we met up with some friends at the bowling alley for a little friendly competition. When we were getting out of the car, Summer was saying how she wanted to win. LOL She is so competitive. We got the bumpers pulled out (they didn't help me) and also got a ramp for her to roll her ball down. It was awesome! She was able to pick up her ball and carry it to the ramp every time. I was so happy about that because I was worried the ball would be too heavy and she would get frustrated. That was not the case though and it was a fun time for all. She bowled a 55 using a 6 lb. ball. As soon as we got up this morning, Summer was ready to go again. :p She did not win, but I did not tell her that. She didn't really seem to notice who won anyway. She really wanted to play another game, but our stomachs were all growling. No major crisis there because hers was too.

We have done a little more decorating today. Her rooms is totally decked out now. The rest of the house not so much, but that's okay. I'm not in a big hurry. Still going back and forth from a real tree to our old pre-lit one. If it's up to Summer, we'll have the fake one up soon. She found something I had for her stocking as we were getting out some decorations, but I snatched it up real quick and put it under her tree. It went off without much of a hitch, but I think that is because we had the decorations to distract her. I wonder how long it will take for her to ask to open it. Last year we did the 12 days of Christmas, but not sure we will do that this year. Maybe by then I'll be sitting on the edge of my seat to give her a present.

I told her the story of Jesus' birth, death, and resurrection today (a very brief version) while she was setting up her nativity in her room. Her reply, "That's strange." She was, as most kids probably are, unaware that the reason we celebrate Christmas in the first place is that it is Jesus' least that's how it started, right? I know that He is the true reason for the season, but over the years its gotten mixed up with Santa Claus. Don't get me wrong, I've got nothing against Santa. In fact, I think it is a joyous time of year with all the excitement it brings little children to receive a gift from Santa. I just want to make sure she knows the real reason for the season. I am also trying to instill in her that it is better to give than receive. Not an easy concept for a 3 year old, or some adults for that matter, but it is important. Giving always feels so much better than receiving. Well, receiving is fun too....enough philosophical talk.

We've got another busy weekend ahead. Maybe Sunday will bring us a day of rest....maybe not.

Wednesday, November 18, 2009

Tossing and turning

I hope Summer slept more peacefully than I did. I am about to go wake her up and head to the hospital. They have to put her under today which they ended up not doing on Monday because she was such a big girl and laid still for them. Today, we won't hve that option though because MRI's are loud and scary. But, I'm not telling her that. I just hope they don't try to take her away from me. Last time, the tech asked her if she wanted to come with him for a little while and held his arms out to her. She did NOT reach for him. I was glad that they ended up letting me hold her hands the whole time. Of course I was probably exposed to some radiation from the scanner, but it was worth it. She remained calm and only a few tears were shed when they tried to get her to wear the mask that would've put her to sleep. She didn't like it from the get go, and then when she did decide to let them put it on her, it smelled awful. Where was the bubblegum scent? The techs did not know. The main radiologist (I assume) came out and asked her if she could lay still and I got her on that game page. The tears stopped, she laid down, they put Teddy on her chest, and I talked her through it. She did, of course, cry when they accessed her port. Some things never change there. She was happy to know (and will show just about anyone) that her port was going to be left accessed all week long. Enough torture is enough in our opinions.

We got a few decorations up yesterday. Summer asked for the Christmas music when she was redecorating her tree a bit. LOVE IT! A girl after my own heart. We also made some oatmeal raisin cookies which she really likes. A lot. She had 3 or 4 before bed last my bed. That did NOT make for an easy night's rest. Cookie crumbs in bed = :( But, I guess she is worth it. She got to play with her Memaw for a few hours while we went to the movies. They had a lot of fun and were, of course, hiding when we got back. Summer loves to play hide 'n' seek.

Well, that's all the time I have. Wish us luck at the scan this morning!

Monday, November 16, 2009

A weekend away

Summer and I went camping with some friends this weekend. We headed up to the Smokey Mountains Friday after lunch. It started with a major meltdown about 25 miles out of town. She I forgot the stethoscope that goes with her new snow leopard toy(although I was never told to bring it). She WAS NOT happy about that one bit. I remained pretty calm and tried to hold the laughter in because it was pretty funny how much she was flipping out. "Turn around." Didn't happen. "Are we there yet?" Did happen, about a million times. :) She fell asleep about 30 minutes before we got there. Thank God! We had a nice RV waiting on us. There was a playground which is where the girls immediately headed. I took duty with them and they swang and slid having the time of their lives. Oh to have that much energy again! We went to eat dinner then tried to have a campfire, but the wood would not burn. There was no warmth even remotely coming from the fire pit. Oh well. The next night we were better prepared and had a huge one. We took the girls into Gatlinburg and got them some candy from one of the candy stores. We also let them mine some rocks out of a $25 bucket of dirt. It was pretty neat, maybe more so for me and Will than the kids although they liked it too. Will and I just couldn't stop until we were sure there were no more "treasures" to be found. Big kids! On the way home, we went to the Knoxville Zoo which was nice. I just love the zebras and giraffes, but Summer's favorite was the meerkats. We didn't get a good look at the snow leopard because it was sleeping (as most cats must like to do in the middle of the day). But, it didn't even seem to phase Summer because by that time she was ready to go. Oh the attention span of a 3 year old.....

Today was scan #1 for her. Two more to go and no results until Monday unless something major pops up and the radiologist alerts Dr. Gratias. We don't go back to the clinic for counts until next Monday. Her ANC was only 1000 which is on the low side in my opinion, but not really "too low." Hemoglobin was 8.9, white counts were 1.9, and platelets were 37,000. Hopefully ,the platelets are recovering and Summer will not need another transfusion of them, but we are watching her for bruising.

We are also looking for signs of fatigue, but there are none of those so far. We went to the playground today after a family lunch at Olive Garden. We played tag and hide 'n' go seek. Clint and Summer usually teamed up against me. I must admit Clint is pretty fast. Lexie and Amanda came by the playground to play with us for a little while. Lexie loved the swing and slide. She teamed up with me on hide 'n' go seek. It was fun. Summer enjoyed it too telling me just a minute ago that it was the first time she had gotten to play with Lexie and Amanda at the playground.

We are going to put up her Christmas tree tonight. Summer already knows where she wants it to go....or so she keeps saying. I got her a purple tree for her room. She has already told me she wants to put all the decorations on it. We'll see how long that lasts. Here's looking forward to a night filled with new memories.

Friday, November 13, 2009

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.

Monday, November 9, 2009

Feeling good in the hood

Well, not actually the hood....

Summer's white counts were up to 2.3 today. Her ANC was 1,400. She has to be at 2,000 to get off the shots, so they gave her two more to get her up that high. Dr. Gratias was afraid if we stopped the shots too early, her white count might plummet down to .5 again so he wanted her to get a few more to be on the safe side. Her platelets were low, but apparently not too low at 28,000. She did bleed a bit when I gave her the shot tonight so I am hoping they do not get any lower. She has to go back later this week for another count check.

She is definitely feeling A LOT better. We went to the playground this evening which was the first time in a while. She ran and played and slid with me at her side. It was fun and SOOOOO nice to see her having so much fun and feeling good. I've almost got my little bundle of energy back! Thank the Lord!!!!

Then we went to Greenlife and picked up some organic food for dinner. Not sure it will help to eat that way only once in a while, but it was a nice treat and turned out really yummy. I really do believe that cancer is lurking all around us in our food and water. There is just too many people with it these days for it to be something that is not a product of our environment and the things we eat. Scary, but I'm going to try to not worry about it. It won't do any good.

I am being beckoned by Summer for more food. She is always hungry it seems. I wonder what she will want now. She's had baked beans, 3 string cheeses, a Nestle Crunch, a brownie, French fries, 1/2 hamburger, garlic bread, tortellini, tomatoes, and cantaloupe so far today. Baked beans it is again. That SOOO does NOT sound good to me. Chocolate, on the other hand, DOES! Maybe she'll grow out of it....LOL.