Bella, Wondergirl

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

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

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!

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

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

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

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

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

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

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

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....

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

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

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

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

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

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!

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!

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

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