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

Happy April Fool's Day!

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

Cuteness at its finest!!!!

Jen, Jw, and Babababbah Bella

The Little Engine That Could

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

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

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

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

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

Love ya
Jen, Jw, and Bashful Bella

Mama

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?

Payless Shoe store is really a good time!!

Jen, Jw, and corn mo lover Bella

Who do you look like?

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

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.