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

This is such an OMG moment!

I'm letting the video speak for itself.

It's MRI time again

So this MRI is cursed. I'm just convinced that it is cursed. Bella had her first MRI October 7th. The following week I get a call saying that they lost her MRI of the brain but that they had the one of her knees. I just think they forgot to do the scan of her brain to tell you the truth. So we had to go last Friday to do the MRI over. This morning I get the news that the original radiologist thought the tumor had grown. Fortunately Bella has an oncologist who is very thorough. He had a second radiologist, one who specializes in reading scans of the brain, look over Friday's scans as well as the past MRI's. The final determination is that the tumor has not grown and what was being read as growth was not growth at all. So after a very long day I'm just thankful to have a little peace and quiet. And I also have to say a special thank you to all my friends and loved ones who have given me a huge amount of support today.

Thanks everyone!

Love Jen and Bella

Four Years and Counting

It was four years ago today when Jerry and I found out that Bella had a brain tumor. These past four years have been both terrifying and wonderful. I've learned so much about Bella's strength and my own. And for the most part Bella and I have laughed our way through it all.



What has been so amazing is watching Bella's progress over these last four years. She has persevered through obstacles and has not given up. I look at her daily and feel so blessed that I get to witness miracle after miracle. In her I see God - his love, his protection, his healing touch. I am so thankful that I get to be apart of something so wonderous.



And while I have had a lot put on me these last few years, I could not have survived any of this without the help of some of the kindest, most loving people ever. I want to thank my parents, my family, my friends and loved ones. But most importantly I want to thank my dear sweet Bella. I hope Bella that one day you will be able to read these words and to know how much I love you. You are my tower of strength. You have shown me what it means to defy the odds.



I have no idea what the future holds. But I do know that Bella will live her life as only she knows how to - with a spirit that will always soar.

Love to you all,

Jennifer and Bella

Bella and Her ABC's

Bella is doing an amazing job in her second year of preschool. She has settled in and is hard at work being a kid, enjoying her classmates, and learning tons of new things. She has stayed very healthy with the exception of a urinary tract infection which caused her to miss one treatment of her chemo Avastin. She is talking my head off and just now said, "More please" so that I would give her more Cheerios.

I hope you enjoy the video below. As you can see, Bella is quickly learning her ABC's.

Love and peace to all,

Jen and Bella

Latest MRI results

Last week we got really good news about Bella's tumor. The latest MRI shows that the tumor is stable and has not grown. So I can breathe a sigh of relief for three more months at least.

Bella is doing absolutely wonderful. She continues to increase her vocabulary. She can ask "What's up?" or "What's that?" But of course everyone's favorite is "Whatever!" I've been working with her on her alphabet. She can manage quite a few letters, but has a problem saying some of them so she improvises saying whatever she wants sometimes.

Now that Bella has her walker, I make her walk around various places. She now has to walk in to her therapy appointments, and I will take her to the park as much as I can. She protests, of course, but it wouldn't be Bella if she didn't.

Hope you've had a great summer. I know we have.

Jen and "Whatever" Bella

Birthday Girl

Four years ago tonight I had the most wonderful thing happen to me - I became Bella's mom. These past four years have flown by and what a ride it has been. There have been lots of tears, but way more laughs. I prefer to focus on the laughs....and on the many times I have had to hear "Whatever." Bella is the best little girl ever and I look forward to many, many more years with her.

Jen

Words of Wisdom from Bella

Bella has a new philosophy for life which she sums up in the video. My part in all of this is small - I just taught her the word. The attitude is all Bella.

In tumor news, Bella's latest MRI showed that everything is stable. No growth! The chemo is working to keep the tumor is check.

Enjoy the video. I think it is a sign of things to come. Oh, God, please help me!

Memorable Monday, Part 1

Bella is famous for getting up early. This morning, she decided to rise and shine at 4:30 a.m. I listened to her for about a half hour then got up with her. My great plan was to lay with her on the couch for the next hour until my alarm when off. Well, she got a little fussy because I would not give in to her demands and off to her room she went.

At six o'clock my alarm went off. And I kid you not, she must have scooted out of her bed like she was tied to a rocket because she was out of her room in two seconds flat. It was hilarious to listen to her. I guess she was doing her form of running. You would have thought she had been set free from jail.

So I get out of bed and tell her that I'm going to go take my shower. She said, "Yes" with a little attitude as if to say, "I know, mom, I'm not an idiot. You always get in the shower when you first wake up." So I'm in my shower scrubbing on my face when from the other side of the shower curtain I hear a shrill squeal. I about peed my pants. Bella had made it into my bathroom and was very excited with the fact that she had found me. Well, we laughed for an entire ten minutes.

I hope all of you have had as good a start to your week as Bella and I have.

Love to all,

Jen and cruisin' Bella

Memorable Monday, Part 2

Bella is using a walker at school now. You can see from the video just how well she is doing. Watcht out world; here comes Bella!

The Great Negotiator

Hi all! Just wanted to give everyone an update on the goings on of sweet Bella. She is thriving in school and is starting to reach out to her fellow classmates. When in circle time, Bella will reach out and "see" who is sitting next to her. Bella is the only one allowed to do this; everyone else is supposed to keep their hands to themselves.

So on Wednesday Bella's teacher told me that she made Bella scoot around the room rather than being carried everywhere. This upset Bella because she likes being carried everywhere. As you can imagine, Bella threw a few tantrums. The kids in her class were so sweet. They tried to help Bella calm down, and one boy even said to Bella, "It's going to be okay." Her classmates seem to be more interested in her. I just love it!!!!

Now to the point of why I titled this blog "The Great Negotiator." Last week Bella got in trouble for hitting me. We were out running errands, Bella got impatient with me, and started hitting me. I told her that she had to go to her room when we got home. All on her own she apologized to me. I accepted her apology and said that she still had to go to her room. At our next stop, she again got impatient with me and started hitting me. I told her she was definitely going to her room. She apologized again. I asked her, "Bella, are you apologizing so that you don't have to go to your room?" And what did she say? "Yes." Well, that just made my heart melt. How could it not?

So she managed to get out of going to bed when we got back to the apartment. However, it only lasted about 45 minutes because I made her mad and she got in trouble again. The result - she was sent to bed for the night. Poor girl!

She's such a little stinker.

Have a great weekend!

Jen and Stinker Bella

A Great Beginning to a New Year

We've gotten the most wonderful news today. Bella's latest MRI shows that her tumor has shrunk a little. Her tumor hasn't shrunk since 2006. This is just the best way to start a new year. And she has been doing great - scooting around, singing songs that we sing to her, exploring her world. I can't wait to see what the rest of '09 has to offer!

Jen