Sunday, April 26, 2009

Home again

We made it home by noon yesterday. I was tapping my toes, ready to go as soon as I woke up. Summer was not so anxious. In fact, she didn't want to leave. She said she didn't want to go to the wedding. She didn't want to go to a birthday party. What she was really saying though was that she didn't want to be de-accessed. As soon as that was done, she was "ready to go to the wedding." LOL

Friday night was pretty uneventful. I played games on the computer while she slept. I finally gave that up and went to sleep myself around 9:00 p.m. Summer woke up to pee on her own and didn't wet the bed so that was good. Around 2 a.m., she informed me that she was finished sleeping. I laughed and said, "No you're not." She told me she was hungry so I gave her a bite of vanilla yogurt. She didn't like it. Her favorite is lemon. I gave her a bite of cottage cheese, and she threw up. Then she asked for a cracker. So, I got up and fetched her some crackers. She ate 4 of them and drank a little juice before we went back to sleep. She woke up with her usual belly ache. Breakfast came, and I ate. :) She wanted nothing. We laid around watching the Disney channel, waiting to be released. Her dreading it. Me looking forward to it. It takes forever to be discharged even when you wake up knowing you are leaving. We saw the doctor around 9:00 a.m. and the first thing he said was that we were going home. However, it took until 11:00 a.m. for the resident to get the paper work done. CRAZY!!!! Anyways, we were both happy campers when we walked out the doors of the hospital.

We came home and bathed. Then she settled on my bed to watch Barney before we napped. On the way out the door to the wedding, Clint and Summer turned around and headed to the garbage can. She threw up. I grabbed some of those handy puke bags from the hospital and we headed down to the car. About half way there, she got sick again. Thank God for those bags! We didn't even have to stop. It was so beautiful when we got there, but rather warm. Summer was feeling okay, even perky at times. But, before the wedding started, she lost it a few more times. Thankfully, it was an outdoor wedding so we just had to walk to the side of the club house by the noisy air conditioners to hide the sound of her gagging. She didn't interrupt the ceremony with it so that was good. She was feeling rather puny, but I think it was because it was warm outside and we were in a cold environment at the hospital all week. She actually went completely limp in my arms once just before the ceremony started. It was scary, but I kept my composure and lifted her up in prayer. I decided we would head indoors where we could cool off and hopefully still enjoy the wedding celebration. It was much nicer inside and she just laid there in my arms. My mom came and held her for a while too. After the main festivities were over, we left and headed back home. She went to bed and has been fine since then.

We had a nice walk this morning. We needed to go to the drug store to get her a fiber supplement because she is still having pooping problems. So, we woke up Daddy and he went with us. It was a nice start to a beautiful day. After that, we ate breakfast. She wanted noodles with sauce. So, I offered her a jar of spaghetti and she ate it. She has also had about half a cup of chocolate milk earlier and some juice with the fiber supplement mixed in with breakfast. The best thing is, she doesn't even know she had the extra fiber! I just hope it works and she can get back to normal pooping. LOL I know it is so fun to read about poop, that is why I write about it. Really, I just want to document the facts at hand so I can look back and remember things that would otherwise get all jumbled up in my head.

We have to go in for more chemo on Tuesday. It is an out patient treatment. She will have to be accessed though. :( I won't be giving her much warning because I don't want her to live in dread. It is so hard to watch her have to go through all of this unpleasantness. But, she is really adjusting well. Yesterday when we were saying our nap time prayer, she asked me to ask her angel to make it where we don't have to go back to the hospital anymore. :( So, I prayed for her not to have to go there anymore after we finish our 8 cycles. Then I told her we were on cycle number 2 of 8 and that we have to do all 8. She said that was a lot. It breaks my heart knowing she will be in that hospital over and over again for the next 7 months (at least). But, we have to do it. I am scared of what the chemo is doing to her little body. I just hope it does not get too damaged. Chemo kills the bad and the good. It cures and it kills. It is necessary though so we will just have to hang in there and let it do what it does. I pray it will kill every cancer cell in her body so she can live a long, happy life. It just has to.


Stephycce said...

Oh I really hope this Chemo does exactly what it's suppose to do and leaves everything else alone. Poor baby. You and her are in my thoughts.

Susie said...

I am so glad that you know how to pray. I know God will be with you all till the end, then it will all be a memory. You're in my prayers and thoughts.

Bridgett said...

I'm glad you're home. Hope you're getting lots of good rest and enjoying your down time.

Summer is a trooper. She'll get through this with flying colors.

It sucks though. It sucks beyond words that your precious little girl has to go through this.

As always, you guys are in my thoughts.


Stephanie said...

Praying for your precious little girl!!!!! You're an awesome mommy :)

Kristi J said...

I've been reading your blog for a while now, and though I haven't commented, I wanted to let you I am praying for your sweet girl. She reminds me so much of my own little three year old with the cherubic face and blonde hair. Summer has gone through so much, and it breaks my heart to think of such a little girl having to withstand so much. You are such an awesome mommy, and while I can only imagine how much your heart breaks seeing your princess go through so much, it amazes me how you are so brave for Summer.

May God continue to hold you up, and I pray for Summer's complete healing.

With love, from a sister in Christ.

Tiffany said...

I really hope and pray for her as well that the 8 cycles will be enough! Give her big hugs from me!

Kathie said...

Summer is in our prayers every night! She's so lucky to have you and Clint as her parents! I'm glad that you have a fun filled day planned :-)


the mol said...

In response to your question about my son's access/de-access opinions:

This is the dressing that they use. MUCH easier to remove. He wasn't crazy about it when they used the regular Tegaderm but he didn't complain much.

If your hospital won't order those, maybe you can bring your own. You could even show it to Summer and see if she gets that it is less sticky.

Sometimes he still has adhesive on his chest, which comes off gradually.