CHICKEN LIPS

My Beautiful Angel

2011-07-07T23:25:00.006-04:00

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

2010-12-28T18:26:00.002-05:00

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!

2010-09-23T10:42:00.003-04:00

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?

2010-08-05T20:56:00.004-04:00

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!

2010-06-28T19:41:00.002-04:00

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

2010-05-17T18:32:00.003-04:00

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

2010-04-08T21:38:00.002-04:00

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

2010-04-05T20:00:00.002-04:00

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

2010-03-05T07:38:00.003-05:00

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?

2010-01-27T21:01:00.002-05:00

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!

2009-10-29T18:40:00.001-04:00

I'm letting the video speak for itself.

It's MRI time again

2009-10-19T21:45:00.002-04:00

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

2009-10-06T21:30:00.008-04:00

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

2009-09-14T09:36:00.002-04:00

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

2009-08-02T01:00:00.002-04:00

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

2009-05-17T22:13:00.003-04:00

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

2009-04-17T19:08:00.003-04:00

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

2009-03-16T13:16:00.002-04:00

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

2009-03-16T13:14:00.001-04:00

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

2009-03-06T20:34:00.002-05:00

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

2009-01-08T16:42:00.002-05:00

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

Babe in Toyland

2008-12-28T10:31:00.004-05:00

Bella has had a wonderful Christmas holiday. Her last day of school before the break was spent at the mall with her classmates. She sat in Santa's lap, rode the carousel, and tasted her first Icee. The Icee and carousel left something to be desired, but I think she enjoyed being in Santa's lap.

Christmas Eve was spent making homemade chocolate chip cookies for Santa (i.e. mommy) and reading "Twas the Night Before Christmas." Then Christmas day began with a 2:30 a.m. wake-up call from Bella. She wanted to rock, of course, and have some bottle. While rolling around on the floor she discovered her present from Santa ..... a bean bag chair! I put her in it and she started giggleing right away. I think it is a winner.

Christmas morning (the real Christmas morning, after the sun came up) was spent eating breakfast and trying to get Bella to open presents. As you can see there are no pictures of Bella opening presents because she didn't want to. I think she was a bit too tired to care about presents. But we had a great morning having breakfast, playing on the bean bag chair and rocking Bella.

Before I wrap up this blog I have to share something with all of you. On Christmas Eve we had a knock at the door and a lady had gifts for Bella. All she would tell me is that it was a Secret Santa. So to the Secret Santa, Bella and I would like to say thank you from the bottom of our heart. It was so kind and generous and much appreciated. The spirit of Christmas lives on.

Love,
Jen and Bella

P.S. Bella says "Ho, ho, hooooo!"

Bella, what did that boy say?

2008-11-20T20:55:00.003-05:00

When I picked Bella up at school today, her teacher had a very interesting report to give me. During circle time, Bella started laughing out loud, and if you know Bella, she laughs loud. When the teacher looked in Bella's direction, it appeared that what was making Bella laugh was a certain boy sitting next to her. He apparently had whispered something in her ear. Well, most of the kids had never heard Bella laugh, so in their delight, they began laughing too. It became so racous that the teacher just had to stop and enjoy the show. Now, what I want to know is.....what did that boy say to Bella? I've asked her and she won't tell me! I don't know what I'm going to do with her.

Pray for me 'cause I'm not ready for boys yet!

Jen and Giggly Bella

Nothin' Slowin' Her Down

2008-11-17T10:26:00.002-05:00

Bella never ceases to amaze me. She has done very well with her chemo so far. The only change I've noticed is that she is not sleeping as well. Most of Thursday night was spent mainly in the TV room with her wanting to play and do her little flips from my lap. Friday she did much better, but Saturday and Sunday she, again, wanted to get up more than once. Needless to say, I'm pretty tired, but have had my helpers. Bella's Nana came over yesterday to watch her so that I could get some rest. We'll see how round two goes....

New Chemo

2008-11-13T21:38:00.003-05:00

Bella began her new chemo treatment today. So far things are going well - no nausea, no vomiting. I'll be giving her medicine for nausea throughout the night and for most of tomorrow just as a precaution.

Talking with her doctor today helped tremendously. Most of the serious side effects (holes in the stomach/intestines, diarrhea, protein in the urine) are rare so that is a relief. I just keep praying that she will be spared from these. And the neuropathy (tingling in hands and feet) that I suspect she has been experiencing, may diminish a little.

So all is quiet in the Shoemaker household for now.

I just want to thank all of you for your words of encouragement. They really help me get through the tough times.

Love,

Jen and Bella

A Lost Battle, But Not a Lost War

2008-11-06T20:44:00.002-05:00

So we received Bella's MRI report today. The tumor has started to grow again. Now Bella is facing a new coctail of chemo drugs for up to two years. I was so looking forward to her going off chemo at the end of December, so this is a big blow to me. Like always, I keep it together because I've always had to. I think there have been times when I have been criticized behind my back for not showing more emotion, but someone has to keep it together while everyone else falls apart. And by this point in time, it is like second nature to me. I don't have the luxury of falling apart, especially now. The most important thing for me is to provide a positive environment for Bella - full of laughter and love. So I hold it all in so that she doesn't hear the sadness in my voice or the gut wrenching sobs. Laughter is infectious and so is sadness. So I just keep on laughing.

People tell me how strong I am through all of this, but I cannot take any credit for it. My faith is what keeps me strong. God has carried me through all of this. I don't know why any of this is happening, but I know that God is with me and He's with Bella. Whatever our need has been, He has always pulled through for us. And I know He will continue into the future. So that is why I can say that we may have lost this small battle, but the war is not lost. Bella is a fighter and so am I. As long as she wants or has the strength to fight, I will do whatever she asks of me to help her.

Please keep us in your prayers.

Jen and Bella

Little girl, what do you see?

2008-10-21T21:04:00.002-04:00

Just had to share some amazing news. Bella had an opthalmologist appointment today down at Vanderbilt. Her doctor said that the optic nerves look the same as last year which indicates that her hydrocephalus is stable and under control. Also he confirmed that the optic nerves are working a little we just don't know how much. During his exam, the doctor used a light to look in Bella's eyes. Her eyes began to jiggle from side to side. The jiggling is caused by the brain's attempt to focus on something. I was thrilled that he was able to see her eyes doing this because she doesn't do it often. You always feel like a nut when you tell a doctor your child can do something, yet the doctor doesn't get to see it for himself.

Here's the best part of the whole appointment. In talking to her doctor, he revealed to me something that no doctor has ever told me. As Bella's neurological function improves, her vision could improve as well. It might not be a huge improvement, but any improvement would be wonderful to me. I've been so worried about making sure that she doesn't lose what little vision she has, that I never gave a thought to the possibility that her vision could improve. On the way home today I cried for a full ten minutes at the sheer joy that my little girl might gain a little of the vision she has lost. I never let my heart dare to have that hope and now I'm full with hope. I know that Bella will never fully see. She may always just see light and dark, but there is hope that it might be just a little more. This is another example of how God has his arms around my dear Bella and that he is taking care of her. She is my miracle baby.

Peace to you all,
Jennifer

Woof, Meow, Moo

2008-10-19T20:14:00.005-04:00

Bella girl is getting to be so big. She can now "meow," "bark," and "moo" with the best of them. She is starting to cruise a little around my coffee table and is crawling over things. School has been a bit of a challenge because she's not rocked at all. There isn't even a rocking chair in the classroom. However, she loves circle time when the teacher plays music and has the class sing songs and dance. Bella will do her shimmy shake dance and keep the beat by bouncing her feet while sitting in her chair.

Recently Bella had her hair cut professionally for the first time. We started out with her sitting in the chair but had to put her in my lap because she was so upset. We ended with hair all over the two of us. In the end it was all worth it. Bella's hair looks much thicker now.

Other than school and haircuts, Bella and I were busy traveling down to Atlanta to see my Georgia family. We had a fantastic time. My dad and I went to an exhibit called "Dialog in the Dark" which is an exhibit that immerses you in the world of the visually impaired. You walk through the whole exhibit "blind." For the tour, there are no lights and you have to navigate through different scenes and experiences. I have a whole new outlook on Bella's world and what she must have went through when she first went blind.

I would just like to ask that you keep us in your prayers. Bella has an MRI in early November, and if it turns out well, then she will be able to go off chemo in December.

Jennifer

Preschool Here I Come!

2008-08-19T13:41:00.004-04:00

Bella became a big girl last Wednesday when she started preschool. There were a few bumps in the road, but overall I think it was not too traumatizing for her. Her teacher, Mrs. Wallin, is enthusiastic to have Bella and I think Bella will learn so much from her teacher and the whole school experience. I must say that the first day was a little emotional for me. I teared up when taking her to school the first day. It has always been Bella and me at home doing our own thing with therapists coming to us, or going out to rehab here in Bowling Green. Now starts a new chapter in Bella's life. With preschool starts the slow transition to independence. I'm so excited for Bella and all that she will experience, but it is a sharp reminder that she is no longer my baby.

Jen and Big Girl Bella

Bella, Wondergirl

2008-07-15T12:48:00.004-04:00

Since her birthday, Bella has been gaining in her superpowers. She is scooting on her bottom, climbing on the coffee table, using more signs, saying momma, and...... is army crawling! She is now VERY mobile. I will find her all over her room now. She goes from her bed to the changing table over to her ottoman finally landing in her closet.

Last week we returned from Atlanta where we visited with my dad, stepmom, stepsister, and family in Alabama. While there, Bella went to her first baseball game. She cheered the Rome Braves on to a 8-2 victory.

August is fast approaching and with it brings another MRI and school. I'm hoping that both will meet my expectations. As far as the MRI, I am very hopeful that it will show no growth in the tumor. Her oncologist said months ago that development is the biggest indicator of what's going on in the brain. Since she has been developing so much, I'm hoping that nothing is going on in that brain of hers except sassiness and lots and lots of development.

I just want to thank all of you who keep up with the blog. Please continue to keep Bella in your prayers.

Love,

Jen and baseball lovin' Bella

Bella's Now Three

2008-05-18T13:30:00.005-04:00

Yesterday was Bella's third birthday. We had loads of fun, food, family, and friends. And Bella's birthday theme.....Cheerios!

Bella is doing great. She's pulling up more and can climb into her recliner all by herself. And now she is sleeping in a big girl bed. Last night was the first night in her bed and she did great. She didn't fall out until this morning. That's pretty good for her first night! Now, if I can just get her potty trained.....

Jen and birthday girl Bella

Bella Big Girl

2008-04-23T16:47:00.003-04:00

Bella has a new trick! She can pull herself into a standing position. Check out the video to see what a big girl she has become. Now that she's pulling up the next step is......walking! Watch out world. Here comes Bella!

Jen and Big Girl Bella

Good News!

2008-04-18T19:07:00.003-04:00

We received the results of Bella's latest MRI and it's good news! There is no change in her tumor so the chemo is doing its job. As you can see, Bella is doing well. Just like any kid, she loves to make a mess and throw toys around everywhere. She's "singing" now and loves to get up on her feet. Soon she will be running around on those feet. She has learned her left from her right and we're working on "behind" and "in front of." Like most kids her age, she likes to get her way and will throw a tantrum if she doesn't get her way. She is the most amazing kid. I know I say that a lot, but it is true. She has true grit!

Jen and Texas Tornado Bella

Bella's Sledding Adventure

2008-03-08T16:04:00.002-05:00

Bella has never really experienced snow before, so what better way to make an introduction than to go sledding. I think the jury is still out on whether she likes it or not. Hope you enjoy the video!

Jen and cruzin' the slopes Bella

Bella the Cupid

2008-02-13T12:40:00.002-05:00

Bella has played matchmaker and we didn't even know it. A nurse at Bella's pediatrician's office and another member of the staff have come together all because of our sweet little girl. Bella had blood drawn at the pediatrician's office this summer and the person taking the blood needed help. So the nurse came in to help and came into contact with latex which she's allergic to. So the staff member drawing Bella's blood checked up on the nurse a few days later and they started talking. The rest, as they say, is history.

This incident has me thinking. Maybe I could rent Bella out to be a matchmaker. If you are needing a love connection, let me know. Bella's hourly rate is one box of Cheerios.

On that note, Bella and I would like to wish everyone a Happy Valentine's Day.

Ciao,
Jen and Cupid Bella

A New MRI and Hospital Stay

2008-02-10T14:36:00.000-05:00

Bella was in the hospital again this weekend. She developed a high fever on Friday and had to go to Vanderbilt for a blood culture. Since her fever was so high the doc decided to keep her overnight for observation and to see what the culture would do. As of last night nothing had grown in the culture, but they will keep checking it over the next four days. She's been very tired today but is drinking well and eating a little bit.

However, we did get the results back on her new MRI. Things looked really good with no growth. A few spots lit up brighter, but the radiologist and her oncologist do not think that the spots indicate activity of the tumor. They've based this on how well she has been doing over the past several weeks. If the tumor was active, we would see a regression with development, irritability, possible dehydration, as well as a host of other symptoms. But she is showing none of that, so we are moving ahead with maintenance chemo.

Bella's development has been amazing. She will get up on her knees and is now trying to stand up on her feet. It won't be long before she is walking and getting into one thing or another. I see my life changing dramatically in a matter of weeks and I can't wait! She will be one little sassy pants on the move.

Jen

Finally home

2008-01-20T12:06:00.000-05:00

Just wanted to do a quick post to update everyone. Bella has been in the hospital for the past few days. On Friday she spiked a high fever. Her oncologist wanted her to come in so they could draw blood and do a culture. Anytime someone with a central line, port, ect.. runs a fever the fear is that there is an infection in the line. So we go down to Nashville on Friday and were admitted because her counts were so low and her fever wasn't coming down fast enough. And then she stopped drinking fluids and eating anything. By last night she finally started drinking and eating. As of this morning nothing has grown in the culture so she probably just contracted a nasty virus. Please keep the little one in your prayers.

Jen

Bella's First Casualty

2007-12-21T09:20:00.000-05:00

The Crime Scene

The Weapon

The Culprit

When you have kids, you expect one day for them to break something. Well, Bella broke off Joseph's head in my nativity scene. Her weapon of choice was her giggling vibrating Bert and Ernie ball. Don't be deceived. Her toy may look harmless, but it is deadly. Just ask Joseph. So this holiday, Mary is a widow and Baby Jesus is fatherless.

Since Bella did not intend to behead Joseph, the govenor of apartment I7, Mommy Jen, has decided to pardon Bella, who's prison name is "Sweet Cheeks." In a statement made by Bella, the pardoned beheader apologizes to Mary and Jesus saying, "Ba ba ba ba ba. Uh da uh da uh da." And anyone can see the sincerity of her statement by looking at her mug shot above.

So this holiday season, Bella and I wish everyone a happy, joyous, and accident free Christmas.

Running in Memphis

2007-12-02T16:55:00.000-05:00

This has been a busy weekend for Bella and me. We headed to Memphis, TN, on Thursday after chemo so that I could run in the Memphis Grizzlies House 5k which raised money for St. Jude Children's Research Hospital. I wasn't as brave as Bella's Nana, Uncle Terry, our pastor Rod Goodman, and family friend Cara. They ran in the St. Jude Mini Marathon (that's 13.1 miles, oh my!). We also traveled with my mom, Linda, and Aunt Dacia and cousins Callie and Carson. We had lots of fun and raised money for a cause that is very dear to our heart.

This being my first 5k I wasn't sure what to expect. I just got out there, ran when I could, walked when I needed and enjoyed all the sights and sounds. You never knew what you would encounter when rounding a corner. At times we were serenaded. Other times we had a whole band rockin' us on. But what really tugged at my heart were all the volunteers (well it is the Volunteer state) and family/friends of those affected by cancer who were on the sidelines shouting out words of encouragement. I even heard people thanking us for our participation. My philosophy is this - if I'm going to put myself through all this joint/muscle pain, I might as well do it for a good cause!

Take it easy!

Jen and baby girl Bella

A Haircut and Halloween

2007-11-20T09:33:00.000-05:00

Bella is doing well with chemo. She doesn't seem to get sick and has not been sleeping any more than usual. Her eating has changed a bit, but that could be to the affect the chemo has on her tastebuds.

In October, Bella and I took a little trip to Georgia to see Grandpa and Grandma Hardy. The big event was the First Haircut! Bella cried and I took pics and video. Bella also perfected her scooting-off-the-couch moves. Now she can scoot off the couch in under 10 seconds. Wow that's fast!

With Bella scooting off the couch, she has discovered a little nook of her own - the area between the couch and the coffee table. It's like her own little cave. She has her toys that she can pull out. And she likes to make attempts at biting the edge of the coffee table. With such a temptation who could resist? But I don't care if teeth marks are all over the edge of the table because she gets the motivation to pull herself on to her knees. And I have even caught her on her knees in her crib. What could be next? Pulling up on her feet! I can't wait.

For Halloween Bella was a pink dog. She was absolutely adorable. I tried to add a picture of her in her costume, but the photo wouldn't upload. As you can imagine she was so cute that she even scored me some candy!

Bella and I want to wish everyone a Happy Thanksgiving.

Two weeks of the treatment plan down, 58 to go....

2007-10-11T22:23:00.000-04:00

So Bella had her second round of chemo today. So far so good. With both treatments she has not thrown up and doesn't seem to feel nausea. She is eating less at a sitting, but that may be due to her taste being affected by the chemo. I'm combatting this by having her eat several small meals a day. I've also started with her calorie boosters: heavy whipping cream, butter, and more butter. A cardiologist would die! She doesn't seem to get too tired by the chemo and is still doing lots of new things like standing up in her crib!!!! She needs a little help getting into the standing position, but she doesn't scream when she's standing which is a good thing. Wednesday in physical therapy she stood mostly by herself for a whole minute and 10 seconds. This may not seem like much, but it is huge for her. And she tolerated standing fairly well to boot.

People talk about how strong I am with everything I've had to deal with the past two years. I'm only strong because of Bella. She needs me so much and I have to keep it together for her. She is my strength. And so is God. He knew I would need her in my life because He knew what crap I would have to go through. He made her so beautiful and funny. She brightens every single day and I thank God for that.

Sorry there are no pictures. I'll have a few the next time.

Adios!

Jen and Bella

Crazy Weekend

2007-10-01T18:03:00.000-04:00

Friday, Bella had her port placed. The surgery went well and only took about an hour. She woke up a little fiesty, but quickly calmed down and had her juice. We arrived home in the p.m. and she was kicking and laughing. By 11 p.m. Friday night, Bella was throwing up. She threw up three times within an hour and a half. The oncall doc said it was probably the anaesthesia and to give her anti-nausea medicine. She couldn't keep the medicine down, but the vomitting subsided. A little after 6 a.m. on Saturday Bella was throwing up again. She threw up about four times in two hours and the oncall doc had me take her to the ER at Vandy. The first concern is always a shunt malfunction. The hospital did a CT scan and a series of X-rays. They all turned out fine. Actually, the water spaces in her brain look better than the previous scan. My next concern was dehydration from the vomitting. When she gets dehydrated, Bella is at risk for her sodium level to plummet. But the doctor ordered for her electrolytes to be checked. They were all perfect. So at the end of the day the diagnosis was a virus. The silver lining in all of this was the amazing care we received at the children's hospital there at Vandy. They are so organized and thorough. They are proactive. And the whole hospital is networked! What a novel concept in the 21st century. I didn't have to answer the same questions a million times. Everything was in their computer for any department to access. This experience was the exact opposite of anything I've experienced at Kosair.

So that was our weekend. Hope yours was better.

Please keep Bella in your prayers for this Thursday. She receives her first chemo treatment.

Jen and Bella

Busy Hands

2007-09-15T16:21:00.000-04:00

Bella has some very busy hands. She has learned how to say "more" by using sign language. Of course she uses the same sign for paddy cake, so you have to figure out which she wants. At times, she gives the sign for "more" and you have no idea what she wants more of, but it is exciting to see that she has figured out the power of language. She's such a smart cookie!

We met with her new oncologist at Vandy and have some promising news. She will be going on a different chemo drug than what she was on before, and this drug has shown to be very effective. I know it is no magic bullet, but there is always hope. Bella is so strong and is such a fighter. She alone gives me hope.

In two weeks Bella will have surgery to have her port put back in. After that, she will begin chemo again. This next chemo drug possibly will have fewer side effects than previous drugs. That's always a blessing. But even better it is administered with just a push instead of a drip infusion. Before, she was hooked up to an IV for two hours, now she will just have to sit still long enough to have the chemo injected in to her port. This is such a blessing to me because I've been wondering how I'm going to keep a very active two year old sit still for a few hours.

In other news, I fried my cell phone when on vacation. I've lost some numbers, so if you don't hear from me, you'll know why.

Love to all,

Jen and Bella

New Challenge

2007-09-03T20:34:00.000-04:00

We found out last week that Bella's tumor has shown a slight change. The main portion of the tumor has not significantly changed, but the wall of the tumor has thickened slightly. Her oncologist in Louisville has recommended that Bella go back on chemo. Since we are now in Bowling Green Bella will now be seeing an oncologist at Vanderbilt. Her first appointment with the new doctor will be this Thursday. We don't know yet what her new doctor will recommend, but we'll keep you updated. Please keep Bella in your prayers.

Jen

Beach Babe

2007-08-27T18:15:00.000-04:00

Last week we vacationed in Gulf Shores, Alabama. Bella and I had a fabulous time. It took Bella a little while to get used to the pool, but once she did she was in love. She splashed and splashed to her heart's content.

Gulf Shores was very breezy while we were there and this aggravated Bella a little. I think there were so many new sounds and smells that she was a bit overwhelmed. She cried when out in the breeze, but we were able to distract her from time to time to snap a few cool photos. She also didn't take too well to sand, either. I can't blame her; it is a very odd feeling on the toes.

But more than anything Bella loved spending time with her family - Nana, Papaw, Granny Hardy, Aunt Dacia, Uncle Terry, and cousins Carson and Callie. For Bella, being around Carson and Callie was wonderful. It has been a long time since she has been around kids for such an extended length of time. I guess since she was 4 1/2 months old when in daycare.

Now, we adults talk about how much weight we gain while on vacation. Well, Bella gained a litte as well. She had two grandmothers around to feed her constantly. It was as if they were fattening up a turkey for Thanksgiving! But hey, the girl is a skinny minnie and could use some fattening up.

So now that we are back the question is......When's the next trip to the beach?

Enjoy the photos!

Jen and the Blond Ambition Bella

Little Georgia Peach

2007-08-12T15:39:00.001-04:00

Bella and I have been busy. We went to see Grandpa and Grandma Hardy down in Atlanta. Bella got to play with Toby the dog, sit like a big girl in Auntie Nora's chair from when she was little, and go shopping. All kinds of people came to see Bella and she was in rare form. She smiled and giggled at all the right times while displaying her talent for rolling and playing with toys. While in Atlanta, Bella almost mastered a few new tricks. She's started clapping her hands with her fists when asked to clap her hands. I worked with her to open her hands when clapping which she did once. So there's a little more work to do with that trick. In addition, she is on the verge of becoming a world famous harmonica player. Grandma Hardy gave her one while we were in Georgia and she showed some great promise. At the end of our stay we visited with Grandmother and Grandfather Johnson and most of the Johnson clan. To top everything off, Bella and I ventured up to Rock City. After an arduous climb by car (what you think we'd walk?) we reached the top to find.......Starbucks! Well, Rock City was there too, but it had been invaded by the creamy, frothy blend of coffee and cream. What is this world coming to? Anyways, that was our journey down south. Next stop: Gulf Shores.

C ya,

Jen and Bella

PT makes me work!

2007-07-24T16:36:00.000-04:00

Bella has begun physical and occupational therapy again. And of course she doesn't like physical therapy. I had to reveal all her secrets to her therapist like how she loves to play possum to get out of working. Fortunately her therapists seem very nice and very capable at what they do. So far they seem to be a good fit for her.

In other news, Bella is starting to roll to toys. She finally getting the idea that she doesn't have to wait for them to come to her. Such a big step in her development. I have to admit that there are times that I really have to hold back the tears because I'm so proud of my little girl. She has come so far and I can't see anything holding her back. God has been so good to her and I know will continue to bless her.

Jen and Bella-roo

I love cake!

2007-07-05T15:36:00.000-04:00

Bella recently turned two and had a blast with her birthday cake. It wasn't so much a birthday cake as a cupcake creation. Since she is the one and only Badfish Bella, her cake was a fish.

In other news, Bella had an appointment with her oncologist and her neurosurgeon. Both appointments had good news. Her oncologist said she could go off her antibiotic at the end of August and resume immunizations in September as long as her tumor has not grown. Her neruosurgeon reported that the bottom part of her head is becoming more in proportion with the top part. All of this means that things are getting to a more normal state.

That's all for now.

Jen and Boogie Along Bella

New adventures in a new town

2007-06-25T21:55:00.000-04:00

We have been going full force for the last few months. At the end of April we moved to Bowling Green, KY. Go Toppers! The move went smooth and we are pretty much unpacked.

In May Bella had an MRI, the first one since ending chemo in February. It showed no growth. She'll have her next MRI in August. If that one shows no growth, then she should be able to go off of some of her medication. Thank God! Plus she'll hopefully be able to resume her immunizations. That would be one more step to normalcy.

Bella continues to develop at breakneck speed. She is making a sound similar to "z". She's standing in her walker and is starting to search out objects she knows is within close range. She's starting to interact with toys and seems to be getting closer to crawling. All of these are such a testament to God's presence in her life.

The biggest change might be in her understanding the word "no". She will shake her head when she does't want something. She's even created a game out of this. You can ask her for a kiss and she will shake her head no. What a silly girl!

Like any two year old she has tantrums. This is my greatest challenge because I don't know how much she understands and she has no way of really communicating to me. I know she must spend a lot of time frustrated because she can't communicate her needs/wants, so she throws a tantrum. I have to be careful when putting her in timeout because I don't want to punish her for being frustrated because she can't communicate. I do want to punish her when her behavior is bad. So it is a delicate balance I try to maintain.

I just want to thank all of you who have e-mailed. You know who you are. And I just want to ask everyone to keep our family in your prayers.

Sorry the update has taken so long to come.

Jen and Bella

Happy April Fool's Day!

2007-04-01T17:14:00.000-04:00

Well, since I can't talk, I can't play any April Fool's jokes on mommy or daddy. However, I invite everyone to get in the spirit and try and play one on them for me.

In other news, I'm in love with Cheerios. I don't want anything else. Mommy threatens to send me to Cheerios Anonymous if I don't start eating other foods.

Have a great day!

Bella

Bella's new trick

2007-03-11T14:53:00.000-04:00

Cuteness at its finest!!!!

Jen, Jw, and Babababbah Bella

The Little Engine That Could

2007-03-05T09:56:00.000-05:00

Bella has always been a little dynamo. If any baby could beat cancer it would be her. We received the results of her latest PET scan and the news is quite promising. The tumor is showing miminal metabolic activity. In laymen's terms, the tumor is alive, but is not very active. I think of it as a bear in hibernation. The bear is alive, but is not doing anything. I asked the doctor if it will grow back, and he said there was a good chance that it would never grow back. What tumor is left may just sit there in her brain and do nothing. Fortunately her type of tumor is slow growing. So as we do scans from time to time, any growth detected would be a small amount. We still plan to get a second opinion just to be safe, but we are taking this news to be very positive.

Jerry and I cannot express how grateful we are to everyone who has prayed for our sweet little Bella. This success is not just Jerry's or mine, it is yours, too. But most importantly, it is God's success. I know that without Him, Bella would not be here today. And without Him, Jerry and I would not be where we are today. Through all of this ordeal, God has put people in our lives who have supported and loved Bella, Jerry and me. I thank God every day for bringing such wonderful people into our lives - people who have loved, supported, listened and cried with us. Thanks to all of you. Celebrate this day!

Jen, jw, and precious little Bella

Growing and growing and growing

2007-02-10T12:56:00.000-05:00

Bella was measured by her nutritionist this week and she's grown an inch over the past month. At this rate, she'll be taller than both her parents by age 5!

Since being out of the hospital, Bella got a touch of a stomach bug. She just can't win for losing. As a result, she's lost some weight and is again below the third percentile in weight. Mommy is going to whip out her bag of tricks, though, and get some meat on those bones again.

Of course through all of this, Bella remains Bella. She laughs and smiles like nothing is going on. She's making all sorts of noises and enjoys being mimicked. There is definitely no shortage of laughter in this household!

Jen, jw, and giggly Bella

2007-02-01T10:47:00.000-05:00

Well it's Thursday and we get to go home!!!! Bella is doing much better - eating, drinking, laughing, sitting up, and saying "ahhhh!" Her sodium level has stabilized and is back to normal. Of course she is off her schedule which means that she is wanting to play at 4 a.m.! Thanks to all who have kept her in your prayers.

Jen, jw, and little stinker Bella

Feeling Sicky

2007-01-28T14:29:00.000-05:00

Bella has been doing well, but caught a little bug Friday night. Because she kept throwing up, we had to visit the ER. And of course, she had to be admitted. I have to be thankful, though, because it has been since April that she's had to stay the night in the hospital.

This visit to Kosair has brought back a lot of memories. I've had flashbacks of sleepless nights, talks with the nurses, days of not knowing what her future will bring. We have come so far and yet still cannot predict how all of this will turn out. This time last year, I was emotionally exhausted with worry about Bella's illness. Now, all I can focus on is enjoying my time with Bella - no matter how much time we have with her. Last year, I was consumed with my sorrow; now I'm filled with hope and peace.

If I've learned anything from all this it is to keep laughing at life. That's what Bella does - laugh.

Daddy's little girl

2006-12-29T20:42:00.000-05:00

Dresses like daddy, funny like daddy, daddy, daddy!!!

Love ya
Jen, Jw, and Bashful Bella

Mama

2006-12-21T19:32:00.000-05:00

Bella is becoming such a big girl. She now is saying mama and baba (whatever that is suppose to mean). Plus she is sitting up all by herself. Hard to believe that she is doing all these things and it is happening so fast.

Jen, JW and big girl Bella

How funny can velcro be?

2006-12-05T16:40:00.000-05:00

Payless Shoe store is really a good time!!

Jen, Jw, and corn mo lover Bella

Who do you look like?

2006-12-03T09:44:00.000-05:00

We decided that Bella looked like curious george last nite. Here is all little bit of proof!!

Jen, Jw, and Curious Bella

A poem written for Bella

2006-11-29T15:43:00.000-05:00

ashley wrote this about bella (based on bella roo)...

Bella

and as they sing and strike their strings
your life hangs between the balance of every ring
you know more than we
what this all means..

you're above us,
and beyond us,
so inspire and require us,
to take note of what you cling to:
this precious substance,
this priceless life,
that we all mean to,
not take for granted.

but yet,
we do.

let our carelessness be used,
to perhaps save the life of you.

If she can be this happy, then why can't we?

2006-11-28T20:07:00.000-05:00

Somewhere over the rainbow
Way up high
There's a land that I heard of
Once in a lullaby

Somewhere over the rainbow
Skies are blue
And the dreams that you dare to dream
Really do come true

Some day I'll wish upon a star
And wake up where the clouds are far behind me
Where troubles melt like lemondrops
Away above the chimney tops
That's where you'll find me

Somewhere over the rainbow
Bluebirds fly
Birds fly over the rainbow
Why then, oh why can't I?
Some day I'll wish upon a star
And wake up where the clouds are far behind me
Where troubles melt like lemondrops
Away above the chimney tops
That's where you'll find me

Somewhere over the rainbow
Bluebirds fly
Birds fly over the rainbow
Why then, oh why can't I?

If happy little bluebirds fly
Beyond the rainbow
Why, oh why can't I?

Laughing Bella

2006-11-23T19:02:00.000-05:00

Turkey Day

2006-11-23T15:04:00.000-05:00

This is the closest I could find to Bella being a turkey. She is a chicken which I guess somehow is in the turkey family. Not really sure.

She is what I am thankful for this year. Another year, another holiday, another day. She is still here and bring joy whereever she goes

Love ya
Jen, Jw, and Belly full Bella

Bella-roo ROCKED!!!

2006-11-20T15:59:00.000-05:00

We just wanted to thank all of the bands that played at Bella-roo. They all played for free!!! Bella-roo was a sucess!!
Starting with the first picture and working our way down: Hope Dialect, the Ocelots, A Spectacular Dispay..., and Redfoot. Thank you very much!!!

Backwards in Time but somehow moving forward

2006-11-16T15:56:00.000-05:00

So every once in awhile I like to make a list of everything that Bella has gone through, just so I don't forget. Its a good way to keep me up to date with everything and not forget anything. I will probaby forget something.

1. Brain Tumor
2. Shunt surgery
3. Brain surgery
4. Shunt was revised
5. Cyst drained from the tumor
6. Port put in
7. 2 seizures- one month apart
8. Numerous MRIs and Cat scans
8. Pet scan
9. 2 different kinds of chemo for a year
10. 4 different medications daily
11. 3 shots during the weeks of chemo
12. living with me
13. Numerous hospital stays
14. Physical Therapy, Vision Therapy, Occupational Therapy
15. Blind(yep, she can't see)

My heart still hurts but I have my baby. Thats what gets me through the day. She is why I wake up every morning.
She is why I go to work. She is why I have done everything.

Love ya
Jen, jw, and Brave Baby Bella

A Great Day for Freedom

2006-11-12T19:56:00.000-05:00

Bella is doing well. We are enjoying every minute that we have with her. Almost every minute. Sometimes she's a little sassy.

We want to thank everyone who had anything to do with Bellaroo. We are so excited about it. It will be on the 18th of Nov. at Trinity Free Will Baptist Church in Bowling Green, Ky. Its free. There will be seven bands and a lot of fun.

Love ya
Jen, Jw, and the Bella who put Bella in Bellaroo

Big Baby Turd

2006-11-05T19:49:00.000-05:00

Big Girl Bella is learning to sit up all by herself. She is doing fantastic. We just want to love her and squeeze her all of the time.

Bella-roo is a concert that will happen on November 18th. It is a fund raiser for Bella's well being. It will be at Trinity Free Will Baptist Church in Bowling Green, Ky. There will be seven bands playing that evening. It will start at 5pm.

Love ya
Jen, Jw, and Big Baby Turd

Bella the Pumpkin

2006-10-28T16:20:00.000-04:00

Bella is beginning to get ready for Halloween. She's been wearing her pumpkin outfit and has bought candy for all the kids in the neighborhood. Like last year, Bella will be a chicken for Halloween and will be going out collecting her own candy!

Chemo has been going well. No new news as far as how the tumor is reacting to the chemo. But, Bella is staying strong despite getting over a cold. Each day Bella seems to be getting closer to crawling. She will now get on her hands and knees while trying to get her head off the ground. Hopefully by Christmas she will be crawling.

Hope everyone has a festive Halloween and eat lots of candy!

Jen, jw, and chicken lips Bella

chicken lips

2006-10-16T15:47:00.000-04:00

Tiny soldiers do battle each day,
waging silent war against the unseen -
an inward enemy that plays evil tricks
on these soldiers' little bodies.
Still, they fight
Still, they smile
Their courage is unending.
Their greatest weapon is their laughter.
Boundless Hope is their captain,
the banner that they carry high.

Tiny soldiers, though often weak,
endure the tests and treatments
that drive grown men to their knees.
They boldly march toward their prize -
toward whole bodies
toward healthy lives.
Often found playing in their beds,
little pranksters they are at heart,
teasing their doctors and nurses,
living their lives to spite this war.

Tiny soldiers, how many have fallen!
Rivers of tears flow in their memory.
Their spirits live on in order to remind us
to continue in this costly, bloody war.
Fight the fight!
Find the cure!
Bring childhood cancer to its demise!
Sing this song for the young heroes gone before,
and ensure victory for the ones yet to come.
The unseen enemy must win no more.

Copyright © 9/18/2004 Tracy M. Ries

Forever and Always

2006-10-10T16:15:00.000-04:00

This past Friday was the one year anniversary of Bella's tumor diagnosis. So I decided to do something that would forever connect me to Bella - I got her footprint tattooed on my tummy. As of right now, her future is still uncertain, so I wanted to have a part of her with me no matter what happens. She will always go where I go and be with me till the day I die if only in tattoo form. When you are faced with the possibility of losing someone you love so much, you try to find ways to hold on to them for as long as possible. I guess I figured that if faced with the reality of having to say goodbye to her physical self that I would have a piece of her spirit always with me.

Jerry, too, has tattooed a part of Bella on him - her name. He had me write out her name and used that for his tattoo.

Please continue to pray for our lovely and sweet Bella.

Jen, JW, and precocious Bella

Cookbooks Have Arrived!

2006-10-02T19:24:00.000-04:00

For those of you who don't know, my mother-in-law, Elizabeth Dale, has put together a cookbook which we are selling to raise money for Bella's medical expenses. The cookbooks have some amazingly delicious recipes (all of which are very low in fat and calories) and have cooking/baking tips. In addition, and I think this is the best part, there are pictures of Bella throughout! Cookbooks are selling for $10. If you want a cookbook mailed to you, we are charging $2 for shipping and handling. Now, I know I'm a little biased, but they look fantactic and would make great Christmas gifts. If you're interested, please contact me at badfishbella@gmail.com.

And as always, thanks to all of you for your love and support!

Jen

Look into my eyes

2006-09-29T16:23:00.000-04:00

Steady, As She Goes

2006-09-18T17:19:00.000-04:00

Why don't you leave me a comment and tell me what you think of this picture?

Nothing I can say

2006-09-11T17:51:00.001-04:00

There is nothing that I can say that can really tell you how sorry that I am to everyone that I hurt. I am sorry Jen. I am sorry Mom and Dad. I am especially sorry to the love of my life, Bella. Daddy misses you and will see you really soon.

If you don't know what this means, you will find out soon enough.

Jw

Nothing I can say

2006-09-11T17:51:00.000-04:00

Feet First

2006-09-09T18:39:00.000-04:00

Doing Well...I don't really have much to say today but thank you!

Love ya
Jen, Jw, and Big Girl Bella

Cuteness

2006-09-06T16:36:00.000-04:00

Seriously, how cute is this!!!!

I wish I could still do that..

2006-09-01T13:05:00.000-04:00

Finally, things seem to be going right for her...

Love ya
Jen, jw, and Ballerina Bella

Pictures on the Floor

2006-08-26T17:48:00.000-04:00

The first picture is Sleeping Beauty
The second picture is Fox and the Hound...that's Jen's idea
The third picture is Beauty and the Beast....You be the judge!

Love ya
Jen, Jw, and Sleeping Beauty Bella

Crying, but for a good reason

2006-08-18T13:19:00.000-04:00

We both cried today for a good reason......Bella's tumor has shrunk again. I don't know percentages or numbers. All I know is thats good news and I'll take it.....Good news on a Friday...No better way to start out the weekend....Oh yeah, Bella just pooped her pants....got to go...

Love ya,
Jen, Jw, and Bulging Diaper Bella

Death to the Bouncy Seats(notice seats are plural)!!!!

2006-08-15T19:57:00.000-04:00

The picture of the bouncie seat is the first one that Bella broke. So, then we went to three other shops to get another one. Then she proceeded to break the other one in three weeks. Strong legs....

Bella goes for a kidney test, hearing test, and a MRI on Wednesday. Lets hope that its all good news....

Love ya
Jen, Jw, and Bella

Upside down

2006-08-08T19:31:00.000-04:00

JACK JOHNSON
"Upside Down"

Who’s to say
What’s impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything
And as the surface breaks reflections fade
But in some ways they remain the same
And as my mind begins to spread its wings
There’s no stopping curiosity

I want to turn the whole thing upside down
All finer things they say just can’t be found
I’ll share this love I find with everyone
We’ll sing and dance to Mother Nature’s songs
I don’t want this feeling to go away

Who’s to say
I can’t do everything
Well I can try
And as I roll along I begin to find
Things aren’t always just what they seem

I want to turn the whole thing upside
All finer things they say just can’t be found
I’ll share this love I find with everyone
We’ll sing and dance to Mother Nature’s songs
This world keeps spinning and there’s no time to waste
Well it all keeps spinning spinning round and round and

Upside down
Who’s to say what’s impossible and can’t be found
I don’t want this feeling to go away

Please don’t go away
Please don’t go away
Please don’t go away
Is this how it’s supposed to be
Is this how it’s supposed to be

Coldplay lyrics

2006-08-06T17:48:00.000-04:00

Not being able to doing anything is one of the worst parts..

Fix You
by Coldplay

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
When the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

High up above or down below
When you're too in love to let it go
If you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I...

Tears stream down on your face
I promise you I will learn from the mistakes
Tears stream down your face
And I...

Lights will guide you home
And ignite your bones
And I will try to fix you

Good

2006-08-05T19:26:00.000-04:00

Bella is fantastic!!!!

Sting Rays, Sharks, and Fishes, Oh My!

2006-07-26T10:11:00.000-04:00

Here are two photos mommy took at the Georgia Aquarium. We had such a wonderful time! I got to hear all kinds of sounds, especially of kids yelling and laughing. Plus I got to hear all kinds of splashing. Mommy says there were little fish and big fish, blue fish and red fish. Some fish were nice, while others would bite you. Yikes! I had so much fun visiting Grandpa and Grandma Hardy. They gave me a lot of attention. Plus I visited with Auntie Nora, Great Grandma and Grandpa Johnson, Uncle Carie and Aunt Margaret. And for the first time, I met someone from France. His name was Elias and he was a visitor of Grandpa and Grandma Hardy. I had so much fun that I can't wait to go back!

Ta ta!

Bella Girl

creed lyrics

2006-07-25T19:36:00.000-04:00

Bella is doing fantastic!!!

With Arms Wide Open
by Creed

Well I just heard the news today
It seems my life is going to change
I closed my eyes, begin to pray
Then tears of joy stream down my face

With arms wide open
Under the sunlight
Welcome to this place
I'll show you everything
With arms wide open
With arms wide open

Well I don't know if I'm ready
To be the man I have to be
I'll take a breath, I'll take her by my side
We stand in awe, we've created life

With arms wide open
Under the sunlight
Welcome to this place
I'll show you everything
With arms wide open
Now everything has changed
I'll show you love
I'll show you everything
With arms wide open
With arms wide open
I'll show you everything ...oh yeah
With arms wide open..wide open

[Guitar Break]

If I had just one wish
Only one demand
I hope he's not like me
I hope he understands
That he can take this life
And hold it by the hand
And he can greet the world
With arms wide open...

With arms wide open
Under the sunlight
Welcome to this place
I'll show you everything
With arms wide open
Now everything has changed
I'll show you love
I'll show you everything
With arms wide open
With arms wide open
I'll show you everything..oh yeah
With arms wide open....wide open

Happy Birthday, Daddy!

2006-07-20T12:54:00.000-04:00

Today is my daddy's birthday! He turns the big 3-0. Mommy is soooo happy that daddy is now in his thirties just like she is. If you get a chance, wish him a Happy Birthday. He would LOVE it!

Ta ta!

Baby Bella

HIppie

2006-07-18T17:24:00.000-04:00

Thanks to all of the Isabellites for the yard sale on Saturday. Thanks to everyone who came and helped!!! Everything was a success. A big special thanks goes out to the Isabellites with the human given names of Gina, Randell, Will(ha, ha), and Caroline for everything. You really don't know how much it means to us. Thanxs!!! If Randell was here, I would give him a big ole' hug and kiss(sweet). Tell Michael, I said hi.....

Love ya
Jen, Jw, and hippie hippie shake Bella

Get up

2006-07-11T18:54:00.000-04:00

Bella is doing well. She is now over 20lbs. She is becoming a chunky monkey!!!

Love ya
Jen, Jw. and Rotund Rory

I love you

2006-07-05T18:55:00.000-04:00

Everything is good with no complaints

Love ya
Jen, Jw, and Big Girl Bella

Strange but true
Every time I look at you
The only three words I think of
I love you
Three words said to much
but not said enough

I just want you to open your eyes
and tell me that you can see me
I just want you to tell me
that you feel no pain

Time Alone

2006-06-26T19:00:00.000-04:00

Time alone only makes things worse. You have way to much time to think about everything. Like the drive into work or laying down at night to go to sleep. I know that she is doing fine. But it goes through my mind the what ifs. You go from one scenario to the next. Usually ending up at the worst one. Or you hear a song and the lyrics make you tear up because you know what their talking about. Even if you really have no idea what they are talking about.

Love ya
Jen, Jw, and Big Girl Bella

Blast from the Past

2006-06-23T19:39:00.000-04:00

Give me your hand. We will walk for awhile. No one ever said that it would be easy but no one ever said it would be this hard. Don't let go of my hand. I think that we have a chance if you just give me your hand.

Jw

K-I-S-S-I-N-G

2006-06-19T15:27:00.000-04:00

Chasing Cars by Snow Patrol

We'll do it all
Everything
On our own

We don't need
Anything
Or anyone

If I lay here
If I just lay here
Would you lie with me and just forget the world?

I don't quite know
How to say
How I feel

Those three words
Are said too much
They're not enough

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

Let's waste time
Chasing cars
Around our heads

I need your grace
To remind me
To find my own

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

All that I am
All that I ever was
Is here in your perfect eyes, they're all I can see

I don't know where
Confused about how as well
Just know that these things will never change for us at all

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Weekend in the Garden

2006-06-17T20:34:00.000-04:00

We spent the weekend in Glasgow with nana and papaw. Fun in the big metropolis. A couple of days away. Jen and I left the baby with the folks so that we could venture into the surrounding cities(not the big cities though, there scary). Bella had a good time getting her picture taken in the flower gardens by nana or thats what nana says. She is doing delicious. She is a little piglet!

Peace unto you,
Jen, Jw, and Beautiful Bella

Does this diaper make my butt look big?

2006-06-12T18:11:00.000-04:00

Bella is doing well. She has a good three weeks!

Peace be with you
Jen, Jw, and Belly sleeper Bella

Flowers/Snow Patrol lyrics

2006-06-06T19:55:00.000-04:00

Bella's beauty is like this flower. Growing, Blooming, and just needing a little TLC!

Peace unto you,
Jen, Jw, and Romper Rory

Run
by Snow Patrol

I'll sing it one last time for you
Then we really have to go
You've been the only thing that's right
In all i've done.

And I can barely look at you
But every single time I do
I know we'll make it anywhere
Anywhere from here

Light up, Light up
As if you have a choice
Even if you cannot hear my voice
I'll be right beside you dear

Louder, louder
And we'll run for our lives
I can hardly speak I understand
Why you can't raise your voice to say

To think I might not see those eyes
It makes it so hard not to cry
And as we say our long goodbyes
I nearly do.

Light up, light up
As if you have a choice
Even if you cannot hear my voice
I'll be right beside you dear

Louder, louder
And we'll run for our lives
I can hardly speak I understand
Why you can't raise your voice to say

Slower, slower
We don't have time for that
All I want is to find an easier way
To get out of our little heads

Have heart my dear
We're bound to be afraid
Even if it's just for a few days
Making up for all this mess.

Light up, light up
As if you have a choice
Even if you cannot hear my voice
I'll be right beside you dear.

Isn't She Lovely

2006-06-05T18:21:00.000-04:00

Sorry that I haven't updated this sooner. But when things are going well, its hard to remember that she is sick. Besides the medicine, therapist everyday, doctors appointments, and the scars, everything seems fine. Bella had a good weekend. Papaw and Nana came up for the weekend. So I'm sure she got plenty of lovin'. Papaw even took a stab at feeding her!(no kiddin')

Peace with you,
Jen, Jw, and my hair is growing back Bella

Pretty

2006-05-31T14:00:00.000-04:00

Bella is doing better now. She hasn't thrown up in a couple of days.
She also has learned to acknowledge the word "pretty". So you can say, "Bella, Are you pretty?". Then she smiles. Its cute!!!

TIRED

2006-05-27T19:53:00.000-04:00

I'm tired of worrying all of the time. I'm tired of worrying when she doesn't sleep all night. I'm tired of worrying when she does sleep all night. I'm tired of worrying when she cries. I'm tired of worrying when she doesn't cry. I'm tired. Jen's tired. We're both exhausted. We are ready to just love her all of the time and give up all of the worrying. We worry about the stupid little things now. Its part of our nature now.

Peace be with you,
Jen, Jw, and I'm the boss Bella

To Much Time To Think

2006-05-22T09:43:00.000-04:00

It takes me about 30 minutes to get to work. I pretty sure that that is to much time to think. Being by yourself, you ponder on things. Like today, I wondered how you explain the colors to someone who has never seen them? How do you describe red, yellow, or blue to a blind person? I came up with nothing.

Jen, Jw, and Battle Axe Bella