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

Babe in Toyland

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?

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

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

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

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?

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

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!

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