Beautiful Bella Girl

I know it has been awhile since I've posted. So much has been going on these past few months, but I hope to catch you up now. Back in October Bella fell at school and hit her head. This led to her speech becoming slurred. After a few scans we discovered that Bella's tumor had started growing again. The fall had nothing to do with the slurred speech, rather it may have sped up the onset of symptoms relating to the growth. We tried a new chemo drug with no success. In addition, Bella's shunt began to fail. So on December 1st Bella was admitted to have surgery to fix the shunt followed by the continuation of a chemo plan that has worked in the past. Well, four surgeries and eight days later the shunt was finally fixed.

While recovering from surgery, Bella started showing more signs that the tumor was growing. The MRI showed that Bella's tumor had become agressive and chemo was no longer an option. We could have done radiation, but at best it would have prolonged her life a few extra months. After many discussions, Bella's father and I have decided to end all treatments. We love our daughter so much and don't want her to go through more than she needs to. This has been the hardest decision we have ever had to make and it is one that has been very painful. We have fought so hard and had so much hope. It's hard to put down your weapons that you have carried so long. Your heart says, "Keep fighting!" but your head says, "It's time to let her go. She needs her rest."

So Bella is at home with us. Most of the time she is just resting quietly, though she has her Bella moments of giggles. And she still manages to boss us around. She wouldn't be Bella if she didn't do a little bossing around.

Please keep our family in your prayers.

Jennifer and Bossy Bella

She's shooting for the moon!

Bella has been doing all kinds of crazy new things. She is learning Braille and her Braille writer. She is learning math concepts like "more than" and "less than." And...........she has started walking!!!! For a few weeks now I have been able to get her to stand on her own. Then I upped the ante and had her take a step. Next I pushed her to take a few steps. And by the end I had her pissed off at me for bugging her so much. To get back at me she took five steps! This week in therapy we managed to get her to walk about six feet, and at school she walked from her teacher's desk to her table. Before I know it, I am going to be chasing her around. Oh my the fun I'm about to have!

I will post video soon. As soon as I can catch up to her!

Ciao!

Jen and struttin' around Bella

What is that I see? Is that a big girl starting kindergarten?

Bella had a great day on Tuesday. She started kindergarten!!!! I went with her to class and hung out for a few minutes. She was a little quiet, but I think she was just trying to figure out all the new voices she heard around her. When it was time for me to leave, I told her "Have a great day!" Bella got all excited and said, "Yes!" So far she has had art, music and library during the time set aside for Specials. She has been able to play with her new Braille writer and loves to hit the space bar to hear it ding. And today she had Morning Meeting where all the students congregate first thing in the morning for announcements. You can see her in front sitting on the floor on her red carpet square. I think this is going to be an excellent year!

Big News! Big News! Big News!

We got the results back today for Bella's latest MRI. To no one's surprise, the tumor remains stable. That's not the big news, though. The big news is that Bella is finished with chemo!!!!! We are hoping that this will be it. No more chemo, no more poisons in her body. There is always the chance that the tumor could grow at some point. For now, we will just hope and pray that her tumor remains inactive and does nothing in the future. Thanks to all of you who have prayed for us. Please continue to pray for Bella that she will remain well and that the effects of the chemo remain minimal.


Love to all,

Jennifer and Bella

Party Girl

Bella was a party girl this weekend. She had two, yes two, birthday parties. But it was all wonderful and she enjoyed being with lots of family and friends. So what does a five year old do when she parties all weekend? She sleeps. Alot. Thank you everyone who helped us celebrate five years of one adorable, amazing and awesome little girl. Whew, I think I need a nap.

Love,
Jennifer and Big Five Year Old Bella

Amazing and Awesome News

We found out today that Bella's latest MRI shows that the tumor continues to be stable. The growth plates in her knees, which can be damaged by the chemo, also appear to be normal. I'm grateful for all this wonderful news. Thanks to all of you who continue to pray for us.

Jennifer

Big Girl Bella

I just had to share this with everyone. Tonight after dinner I had Bella feel her placemat which has the Braille alphabet and a word for each letter. First I had her feel the letter "A" and I asked her to tell me the letter. She correctly identified it as the letter "A." Then I moved on to "B." Again she correctly identified the letter. Up until the point she has just been identifying letter using a muffin tin and tennis balls. I'm just in awe. Before I know it she is going to be reading little words!!!!! And then big words!!!! She just blows me away.

Bella's New Job

Besides being an amazing little girl, Bella has now added Master Gardener to her list of accomplishments. Yesterday she helped me poke holes in the dirt so that I could plant spinach seeds. As the plants grow, I will have her feel them and teach her about how to care for the spinach. When they are ready to harvets, I will have her help me. This should be a fun project!

In other Bella news, she has begun learning Braille. Her therapist uses a muffin tin and tennis balls to teach her the placement of the Braille dots. Eventually she will learn how to feel Braille on pages of books and on signs. So far she has mastered the letters A, B, C, and D.

I can't believe all the progress Bella has made this year. All I have to do is blink and she is doing something new. She is on the verge of walking without assistance and talks my head off. Bella has gone from saying words to constructing full sentences. I can actually have a small conversation with her. I'm so excited for her future and all that she will accomplish.

Jennifer

Are the holidays really over?

I blinked and the holidays were over. How did that happen? The whole month leading up to Christmas I would ask Bella if she wanted Santa to visit. Always the answer was, "NO!" But once she woke up Christmas morning and found her presents, then Santa took on a whole different meaning. I've never really thought about how she perceived Santa or if she thought anything about The Jolly Man at all. This year was different. She had an opinion, wasn't afraid to let everyone know it, and changed her mind in the end.

We had a wonderful Christmas morning with Granny. Lots of presents, food, and movies! Among other things, Bella received the movies White Christmas, A Miracle on 34th Street (old version) and Mary Poppins. So we had lots to watch all day. Christmas kept going in this household till last week when we celebrated with Grandpa Hardy who lives outside Atlanta.

The best present of all turned out to be Bella's MRI. The tumor is stable and has not grown. I'm always a little nervous every quarter when it is time for a new MRI, but this time I felt really good. She has been doing amazingly well. She has transitioned to a front walker, is talking up a storm and can spell two words! We are working on the concept of having patience and that you can't get everything you want.

Now, if someone could teach me to have a little patience. Especially when I have to deal with very slow drivers!

Have a good one!

Jennifer and Bella