My Beautiful Angel

On March 27th Bella lost her fight with cancer. She fought the most amazing battle and laughed in the face of fear till the very end. And though her road was tough, she met each challenge of her life with tenacity and such great spirit.

The last four months of Bella's life were very difficult. She lost the ability to talk, walk, even move her arms and legs. She needed a feeding tube and sometimes relied on oxygen. The last two weeks of her life were even tougher. The tumor caused her great pain and pressed on nerves that made her left shoulder twitch and move. But in true Bella fashion she laughed one more time just four days before she passed away.




The last two days of her life were the worst. On Friday night, March 25th, Bella's lungs began to fill with fluid. She developed what many call the death rattle. Fortunately for her, we were able to give her medicine to ease her pain and help her stay comfortable through all this.

And just a little before 3 p.m. on March 27th, Bella took her last breath. She died laying on my chest as I rocked her in her favorite chair - the recliner. I find it a little poignant that she began her life inside my belly, and she ended her life laying on top of it. Not many parents can say this, but I witnessed her first breath and I witnessed her last. And despite all the pain, I can see beauty in that fact.



So this is it. My last post on this blog. I always hoped that this would end differently, but I was also very aware of the reality of her diagnosis. And inspite of the outcome, I can truly say that Bella was a miracle. She defied so many odds and did so many wonderful things with her life. I don't think I will ever match her courage and determination or her great accomplishments.

If there is one thing I have learned from Bella and all she has done it is that in order to gain anything in this world, you must challenge yourself. I challenged and pushed Bella, and she did great things, even impossible things. So now I throw this out to you. I am going to start a new life where I challenge myself, and I challenge you, too. See what new things you can do and accomplish with your life. Bella showed that the impossible is, indeed, possible.

Thank you so much for following us during our journey. There was much laughter and some tears, and I am happy to have shared those with you.

You can continue to follow my story at www.pocketofposies.posterous.com.

Best wishes to you all,

Jennifer

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