Thursday, June 4, 2009

Freedom is sweet!

Summer has enjoyed being out of the hospital as much as I have. This morning she asked if we had to go to the hospital and when I told her no, she was full of joy. The smile on her face was so awesome. Sometimes it is hard to get one. Chemo literally sucks the life out of her and she is constantly recovering from it. Clint mentioned the other day how noone told us about all the in between chemo hospital visits for fevers. Every cycle when her counts are bottoming out, she runs a fever and we are automatically admitted to the hospital. Nonetheless, we are trekking through this year trying to make the best of what we can.

Summer loved Chuck E Cheese. She is still at the age where you can go and play a few games, get a few tickets, get your prize and leave. She doesn't need to eat there or use all the tokens before we leave. We probably still have more than half of the tokens we got left. We almost went to a fair afterwards which was in the mall parking lot. However, it did not open for another half an hour so we left. I'm glad too because it was scorching hot outside. I am hoping to get to take her tomorrow evening for a little bit if she is up to it. Don't worry, I will be taking clorox wipes to help combat some of the germs on the ride. :) Even though her immunity is up, she can still get sick like anyone else.

Yesterday, her cousins came up for a while to play. We walked down to the water by the aquarium and let the kids play. When I first told Summer that we were going there, she did not want to go because she did not want to get the bandaid on her port wet. So, that prompted lots of whining. She didn't want to go, blah, blah, blah, whine, whine, whine. Poor girl does not like to get her bandaids taken off because it hurts her tender skin. :( By the time her cousins got here, she had calmed down, but still didn't want to go. When she realized the water was only going to be knee deep and she wouldn't have to get the bandaid wet, she was fine. The funny thing is she likes to wear bandaids on her arms and legs. She calls them "stickers." :) But, you put one on that port and it's like you are torturing her. LOL

We are going to Playgym today. It has been months since we went and since her counts are up and it is not cold and flu season, I think it will be okay for her to go this once. There are only a few "good" days a month that we can actually have some sort of freedom. Then we are going to the Aquarium to watch the penguins swim and hopefully get a butterfly to land on us. That rarely happens to us though, but today is a new day.

Summer got a toy penguin that swims from one of her chemo angels. So far we have just used it in the bathtub, but we may take it to the pool one day. Her angels have been so good to her. She loves it when she sees one of their packages, clearly marked "Angel Mail" on the outside. She has gotten all kinds of neat treats from them: bubbles, a tiny barking puppy, My Little Ponies, books, stickers, a Barney toothbrush......I could go on, but I won't. :)

She has been eating more, but still not a lot. One of our neighbors brought her some cookies last night. They were individually wrapped and decorated and VERY yummy. The best part is Summer likes to share! She will start eating a cookie and then let me finish it. Of course, she very rarely finishes all of everything she has in front of her these days.

My goal is to maximize our fun time for the next few days. She could be going back in for more chemo on Monday. Depends on her platelets. I kind of hope she does get to go in because then we should be out in time for the fireworks. :) Of course, I probably just jinxed myself and the fireworks will not be part of my future. I sure hope not. I just have to BELIEVE. Still working on that one....although the world is looking pretty bright these days. Despite the rain, today is going to be sunshiny for me!!!!!


Anonymous said...

I am praying that you will be out of the hospital in time for the fireworks!! If your not I will be glad to stay with Summer and let you go enjoy them if you like, it would be my pleasure. I hope you guys have a wonderful day today :D I love you sis! OXOXOXOXOX

the mol said...

From mid-December until mid-April, we really hit the jackpot in terms of avoiding the extra hospitalizations. Our doctor said that we could, theoretically, expect an extra visit every cycle. After our son's first chemo on the relapse regimen, he had a visit that lasted a few days.

Hopefully all of your visits are just visits and not permanent residencies like ours seem to be! Enjoy your freedom!!!!

Stephanie said...

I hope you guys have an absolutely awesome weekend!!!!!! Keeping you all in my thoughts and prayers!

Stephycce said...

Whew sounds like you guys have been busy!
That's awesome!
Hope you have fun this weekend.


Kathie said...

Its so good to hear about all the fun that you have planned! I hope that you get to see the fireworks, too! It's nice that you can stay home and see them from your deck!

Susie said...

Glad to see that you have alot of fun things to do and make memories with. Praying that she is well enough to go to the fireworls.

Bridgett said...

Yay for freedom!

I'm so glad you guys are enjoying your time out of the hospital. Sounds like Summer is doing very well.

Don't waste a single minute of this weekend. :D