Radiation Vacation Update 4

It's been a little while since the last update. Sorry! Things seem to be going well. Belle's headaches seem to be less frequent, meaning, not happening multiple times a day or even everyday. Her nausea persists but is manageable. Thursdays and Fridays seem to be days when Belle is just not feeling well. A new side effect is that Belle's hair is starting to fall out. It doesn't seem to bother her at all but it breaks my heart to see her hair at the bottom of the bathtub, collecting on the back of her jacket, or in my fists after I brush her hair. It's just another reminder of a treatment that no parent ever wants to have to see their child go through. However, at the end of the day, it's just hair and it should grow back and if it doesn't, there are some pretty sweet wigs on the market these days. One sweet girl here sports these wigs often and I have grown quite fond of a rainbow colored one, I have to smile every time I see her, I just love her confidence, courage and strength.

It's pretty amazing to be able to witness how amazing children can be. The kids here at Christopher's Haven are faced with some of the most horrific situations, fighting cancer and tumors, enduring multiple surgeries, and receiving chemotherapy and radiation therapy. These small people go to doctors appointments everyday, where they are poked and told to hold still or told to move (at physical therapy) after chemo or radiation (or both!) has made them feel so weak and tired and they will still smile and wave, "hello," if they see you in the hallway. They work on their homework everyday, fearing that if they don't, they will be left behind. They keep going, smiling and laughing, becoming these amazing little people who can teach us so many things if we just took the time to sit and observe them or listen to them. Tiny little people with more life experience than many adults. They are incredible and I am blessed to have met them and I hold them dear to my heart.

The Tinniest One.

There's been a lot of focus on Belle, and understandably so. This post, however, will be all about Kierra and how she continues to brighten our days.

I think the one word to describe this special little girl is, "smiley." The girl is full of smiles. She is so quick to laugh and have fun. She literally bounces from one place to the next, the girl hardly ever takes a normal step. This world is her playground and we are so fortunate to live here with her. My sweet Kierra has even made up her own land called, "Kierkah Land," a land full of green and frogs and lily pads. There's even a castle because a girl has to live somewhere. She is full of life and imagination. She breathes art and ballet and singing. When she's not bouncing from place to place, she is carefully balancing on her tip toes, twirling like a ballerina, dancing to the song in her head. She can often be found humming a variety of songs as she colors or paints. She is a joy and brings a sweet reminder to smile as we go through this trying time.

Kierra loves My Little Ponies. Her favorite pony is Pinkie Pie:
                                                           

This is Pinkie Pie's song:

That songs captures Kierra perfectly, if you know her at all, I think you will agree.

This is Kierra chasing a squirrel. 

This is Kierra after she followed the squirrel into a bush. 

Watching the ducks at Boston Common.

Thrilled that she is actually holding a butterfly and that one has landed on her elbow!

We have asked Kierra how she feels about Belle's situation, and with wisdom that only a 5 year old can possess she replies, "I prayed for Belle and I know that God is going to take care of her." Simple as that.

Remember to keep smiling!

Radiation Vacation Update 3

Well, more of the same, headaches and nausea. I think this will be the norm for a while. The past couple of days Belle has just felt "out of it." This is a very normal reaction to radiation treatment so we are not too concerned and it helps that Belle seems to be handling all of the changes well and keeps smiling.

Belle is eating more these days. She has always had a big appetite so it's really nice to see her eat more normally. She has been eating lots of fruit and vegetables and is trying to make healthy choices. When we started treatment Belle's doctor told us how important it would be for Belle to make healthy decisions such as eat healthy, get good sleep, stay hydrated, etc. Really, these are good ideas for everybody, but especially for Belle. She seems to be taking more responsibility for her own health and seems to understand what she needs to do to take care of herself. She's having to grow up so fast! I am so proud of her, she is amazing. I am so blessed to be her Momma.

I have lost track of how many treatments Belle has gone through. I think it might be easier to not count the days, then I'm not focusing on the past or future but giving more focus to today. I want to enjoy each day to the fullest and I strive to do that but I will also give myself grace for when I fall apart. I am thankful for every day that we have to be together, vomit and all. :)

Team Harrison goes to Boston

This girl got a new camera and I love it! I'm still learning how to use it so bear with me.

I love photos. I love the memories that are captured within. I love capturing smiles and personalities with a single click.Two of my favorite subjects are my girlies. They are so full of life and joy, I just want to soak up every second of it. I wish I could add a sound clip of their laughter and squeals and cute things they've said with each picture. How fun would that be?!? How I long to hear their little voices and coos from years ago. I wish I could hear Belle ask, "Wha's that?" in her sweet one year old voice. Or to hear Kierra pronounce her name, "Kierkah" when she was just 2. Thank goodness we have videos and saved voice messages of their precious voices.

We have been able to go on many adventures since our arrival in Boston. We've gone on the Freedom Walk, been to the science museum, the fine art museum, the aquarium, watched a baseball game at Fenway, went to the top of the Prudential Center and have visited many parks including Boston Common which holds Frog Pond. We've also been able to visit Maine, New York and Washington DC! We even stopped and shopped at a Target and Micheal's in Connecticut, it was very thrilling for me, not Matt.

Here are some photos from our Boston adventures. Enjoy!

Radiation Vacation Update 2

We just finished Belle's 9th radiation treatment! Belle seems to be feeling much more comfortable with the radiation treatment process. She doesn't get anxious when they put the mask on and she's not giving me a hard time about having her hair put up! These two obstacles were causing unnecessary stress, so winning these battles has brought on a sense of relief and calm. Knowing that we aren't going to have an emotional struggle makes treatment so much easier! Belle is still experiencing nausea and headaches almost everyday. Her nurse suggested that we give Belle her nausea medication at night and that seems to have helped for the most part, she has actually been able to eat a little in the morning! Belle's headaches come and go, sometimes they are very painful and wake her up at night. There doesn't seem to be any rhyme or reason to the headaches so it's hard to treat them prophylactically- That's a fancy word I learned while we were in the hospital. :) We are hoping that the nausea and headaches will ease up over time, especially the headaches. Any headaches that Belle experiences causes me stress, I never know when it's just a headache or a sign of something worse, it's exhausting.

A fun side note: One of the radiation techs noticed Belle's bumblebee socks and has given her the nickname of "Bumblebee." I love it and I hope it sticks.

Well, that's the update for now! I hope to post pictures of our Boston adventures soon so stay tuned!

Radiation Vacation Update 1

Belle has been receiving radiation for a week now. During one of our first appointments, Belle had to have a special mask made that would keep her head completely still during her radiation treatments. This mask will be used during every treatment, Belle is not a fan of the mask, I think that could be the worst part for her. I also have to pull all of her hair up on the top of her head in a ponytail, she doesn't like that either. I, on the other hand, think it's funny, she looks like a little turnip. The actual treatment takes about 10 minutes and she gets to listen to her favorite music. She always comes out of treatment with a smile and laughing with the techs and nurses, they love her, it's hard not to love a little girl that looks like a turnip.

So far radiation has made Belle feel more tired and nauseous. The nausea seems to be worse in the morning and then fades away, sometimes it comes back later in the day. She's not tired enough to take naps everyday but falls asleep very easily every night around 7:30 or 8. We were told that she would probably experience these side effects but they shouldn't last long. Other than that, she's a happy little turnip.

And a year later... Part 2

Tumor?!?!? And that, my friends, is how your whole world can change with one word. Our plans for the summer were replaced with countless days in the hospital, nights filled with worry and crying, days filled with aimless wandering. I had never known true pain until this past summer. There is nothing that can compare with watching your baby, your heart and dream, go through pain and suffering while you sit by helplessly. If there is something that can compare I don't want to know what it is.

A chordoma. A rare tumor. In the middle of my sweet girl's head. I am still having a hard time accepting this truth. I don't know if I will ever grasp every detail of the situation. It's just so unbelievable... But I have to believe it. Because decisions have to be made, because we have to deal with it, we are in battle, we are fighting for Belle's life.

After three surgeries, two CSF leaks, meningitis, and a chronic sinus infection, all in less than three months, we are in Boston so Belle can receive a specialized radiation treatment. It's been a whirlwind of events but I am starting to feel like things are getting more... normal. A new kind of normal, our normal. I think I will be learning about our new normal for a little while and I am sure there will be times of adjustment. I don't think it will be an easy road. There will be times of extreme happiness, worry, fear, and exhaustion but I can't think about all of that right now. I have to focus on today. Day by day, moment by moment. That's how I will get through all of this. I will rely on strength that can only come from God, trusting that He will carry us through this.  I will pray often. I will do my best to be still and listen for His whispers. Sometimes, when I'm just too tired, I simply pray, "Lord, you know my heart." I know that He knows what I mean. I am thankful for that.