About Me

My Photo
Born in Atmore, United States
Wife & Mommy. I have a wonderful husband who loves me deeply and three great kids. I believe in my Creator who guides me everyday. My favorite interest are stage/theatre, music/singing, antiques and art.

Monday, January 26, 2015

Over the years


It's hard to believe this picture was taken four years ago. I was looking through my TimeHop photos/post. You always get reminders, of good or bad situations, whatever it is that you posted to social media over the years on that particular date. 
Not that I need reminders of many things, but this weekend, Timehop reminded me of a few things and I realized that Ivee had something tragic happen on the same dates two years in a row. 
January 2010
Five years ago today, after a ten day hospital stay with an external valve and strong antibiotics, Ivee would under go a shunt valve replacement surgery after cellulitis made a "rare" development on the external side of her shunt line. She had a horrible skin allergy to a certain powerful antibiotic, and the doctors wouldn't listen to me when I knew which drug it was. She continued to get worse for seven days, til after the surgery and out of PICU, I pulled a resident off the floor and demanded he listen to me. Finally, someone heard me and we were able to change the drug and get her better. 
Flashe forward one year....
January 2011
I was in Memphis with my friend Cathy, who was with me on many trips up to St. Jude when Emmett couldn't go, to get Ivee's scans. It was three and half years from the end of Ivee's treatment in 2007. We had just gone from 3 month scans to 6 months. She was moving forward and getting better every year. We had scheduled to have her port removed on Thursday of that week and Emmett was going to fly up for the surgery. We waited in the clinic for the doctor to recieve the news from the scans the day before. Usually, he walks in and says hi, things look good. He gets straight to the point, always, knowing that the parents want the "good" news first to set their minds at ease. I learned that day in January of 2011, that he gets straight to the point with the "bad" news as well. I honestly don't remember his exact words, I just recall that he said the original tumor (left behind from the first tumor removal), that we had been watching and had hoped was scar tissue, was now growing. The tumor had survived chemotherapy and radiation. 

God changed my life the first time our daughter faced cancer, but knowing your daughter has cancer again...it's a different kind of life changing moment. You already know this road. You already know what the first tumor surgery did to her body. You know that you are only suppose to have a round of radiation once. The first round she had 33 doses, and here you are trying to decide if your going to give it to her again, cause so far, in experimentation, this has been the only way to effectively "try" to defeat her cancer. You know other children have done this second round and just a handful didn't have recurrent tumor after the second time. The second tumor surgery (in February) has permanently killed her right vocal chord, and her left is very weak, she can't swallow well, she aspirates...She has permanent damage in many ways, but she always fought to move forward. 

....and....


HERE WE ARE NOW!!!
Look at that beautiful family! I am so blessed...no matter the outcome. No matter our continuing struggles. 

My babies....can't believe they are 18,15 and Ivee will be 9 in May! NINE! 

Our move to Texas has been a great decision for our family. Ivee is doing well (much better since we moved out of the last house that made us all sick). She has great doctors here. The Pulmonologist has done so much to make her quality of life and sleep so much better!  I'm trying to keep her well during this flu season, and so far we've dodge it. 
We have found a great church family. We are so excited to have a new pastor and see where this new journey is going to take us. These people feel like family, something we have searched and longed for in over five years. 

As always though, I ask for prayer for a few things. 
First, for Emmett and his work. Just lift him up please!

Second, Ivee's next MRI scan is at the end of February three and half years after the end of her last tumor treatment. This momma is a little anxious, but I know who holds today and tomorrow. And that we will continue to get what we need for her health and that in in her education. She will make leaps and bounds to catch up. 

Third, my other three kids...that's right, I said three. We have an extra child now, my niece. Please pray for my three teens in the house. That they will make Godly decisions, learn from heir mistakes and they will understand that everyday is a new start. Pray for them as they are still adjusting to new school, teachers and peers. And that they will make wise decision in friendships and relationships. 

Thank you all for nine years of praying us through! 



Thursday, December 25, 2014

The most Blessed Season of All....

As I sit here watching TV with the girls, I just flashed back to Christmas 8 years ago. Ivee's first Christmas, our family awoke at the Ronald McDonald House, just down the street from the Children's Hospital, without her as she lay in PICU 5 days after brain surgery. 
For Christmas, that afternoon, she got the gift of her own room on the regular floor where she would spend 25 more days dealing with pain, wound leaks, fighting nurses, undergoing procedures, and having more surgeries to place a feeding tube in her stomach, tie her stomach around her esophagus and install a central line in her side where at the end of that time she began chemotherapy.
MY how our lives changed, and I cannot begin to explain how God showed me the true meaning of Christmas. How very important is to have family and how desperately we need to love other people!
MERRY CHRISTMAS to all of you! I pray that you all find the reason for this day and that you find the TRUEST love of all!

Friday, December 19, 2014

GIFT DAY: 8 Years and counting

Yesterday began the 8th anniversary week of the hardest time in my life, but a journey that has brought me more blessing over the heartache. 

I am incredibly blessed and my heart over flows with the love I have for my baby girl. I think my baby girl who have made a huge change in my life with or without the struggle she has had facing cancer. He heart is just so kind and loving. I want to share a look down memory lane, not overflowing this post with too many pictures or flashbacks. 


This was my baby girl the day after her fall from the grocery cart, with only a bruise on the forehead to show for it. The next day she would undergo a 5 hour brain surgery that would never leave her looking the same or being "normal" again. 
She would never eat by mouth again. 
She would never cry or speak normally/loudly again. 
Her eyes would never be the same. 
She would never hit developmental marks in her life like normal children do. 
She would never play like a normal child. 
These things never entered my mind, and our family had no idea she would never get a normal childhood. 


A few days after her surgery, I got to hold her. She just laid on momma's chest and stopped crying. Even now, my heart breaks seeing her this way. 

Jumping ahead, chemo was a tough, tough road. She began to get stronger after surgery (this was Valentines day 2007, two months after brain surgery). She was in the hospital, either for chemo or because she was Neutropenic. She was a happy baby through all of it, even when she looked like death was on her face. 

We made it through chemo and radiation that year and celebrated our first G.I.F.T. day that December 2007. I made a special decal just for the occasion. 

G.I.F.T. 
God Is Faithful and True


16 surgeries, 6 months chemo, 63 doses of radiation and she would always find the bright side of hospital stays. This was the last time she would have a shunt placed, and I hope it will be the last time for the rest of her life. She was 4 years old. 

She has had two hospital stays this year in TX for double pneumonia, and the look on her face when she gets home from being in there a week gives me mixed emotions. It makes me smile, but I hate that she has to find the joy in being released from IVs and hospital beds. 


Doing all we can at home means morning and night time breathing treatments x4, Cough assist machines, nebulizers, BiPap machines, Pulse Oximeters, oxygen concentrators, suction machines, Joey Pumps and feeding tubes. These are the things that try to keep her healthy and alive. Without modern medicine, I would never have had the honor to see this little girl grow up and touch so many peoples hearts and lives. 
She is a miracle, who loves to bake, though she never eats anything; loves to dance, though she struggles to keep her balance; loves to sing, though she can't be heard. She doesn't she that she can't do these things well! She just wants to do it all! 

I am incredibly blessed and she is my little ray of sunshine that reminds me that even on my darkest days, there is hope! 
Thank you GOD! 


Saturday, November 08, 2014

Double Pnuemonia...again

For those who don't know, Ivee was admitted to ICU Tuesday for high heart rate, double pneumonia (again since June), and also diarrhea. Fever has gone, and she's has been taken off IV antibiotics, do to a very sensitive IV site, and put on oral antibiotics (through her g-button).  Her heart rate has come down. She's handling fluids fine. She began on 4 liters oxygen during the day and as of right now is on room air and stabilizing at 92/93 O2 stats. Coughing up a lot of secretions and mucus, and she is diarrhea free. We have had to increase her BiPap settings at night, but she continues to need 8 liters of oxygen with it. 
She has gotten out of bed and the room often, to walk around, but it seems she is just struggling to get what she needs to get out. Hospital stays are very hard on her. Of course, anyone knows you don't sleep in a hospital. She's very determined to go home, so we are trying our best to get her to do what she needs to to make that happen! 



Wednesday, October 08, 2014

I need HELP!!!!!

It's that time again...and I need

I have had my hands full with homeschooling Ivee and taking care of her medically, so frankly, I just don't have alot of time to blog. 

BUT

This is important. 

I am dedicated, once again, to raise $3,000.00 for St. Jude Children's Hospital, where Ivee was treated and survived cancer...twice. 

(Ivee still struggles with deficits from cancer and St. Jude continues to help her to try to fix the damage, or manage, what cancer did to her!)

I am at only 10% of my goal with only 45 days to go....


Will you Please consider giving a tax deductible donation? 

Ivee and so many other 1000s of children benefit from every dime given! 

CLICK HERE TO GIVE or to join TEAM IVEE! 

We love and appreciate you all! 

Friday, September 26, 2014

Thoughts...

I post to FB, well ever so often, my feelings and such on all things pertaining to our walk with little girl. Just wanted to share my last two postings.

Thursday, 9-25-14

You may think (but probably haven't), "You know. Hope sure hasn't posted a lot about Childhood Cancer during this month of awareness. Maybe it's not as important as she made it out to be." It's true, I haven't. Why you may ask? (But probably haven't) 
Well, the answer. I'm too busy dealing with the after effects of surgery & treatment from Ivee's cancer, plus being a wife and mom to other people who need me. I know, every body's busy. But here's my life. It consist of taking care of medical needs, much like a child who has to take care of a elderly parent. My morning begins with an hour of unhooking machines, such as pulse ox, feeding tube, Bipap machine, and oxygen concentrator, giving breathing treatments, rubbing helpful oils on her or diffusing them in the air, and using a cough assist machine to help her "gag" out secretions that built up in her esophagus and airway over night, and using a suction machine to suck those secretions out of her throat and nose. I finally grab a bit to eat, then I spend hours trying to catch Ivee up on school, which involves doing lesson plans and sitting by her side the entire time cause she is easily distracted and must be kept on task. Then I fit in errands, doctor calls, and whatever else may come up. Then my thoughts around three sometimes go, "Oh my gosh, I forgot about supper! Let go see what I can throw together." Then some days, like today, it goes, "Oh wait, Ivee's very congested, let's give her another two breathing treatments, her oxygen is low. Should I take her in for a chest X-ray or wait? No fever, but then again, she doesn't always have fever. No, I think it's all nasal this time."
Once supper is over I clean up and then by seven it's time to begin what I did this morning all over again, but in reverse. Hooking machines back up, giving breathing treatments and shots, cause she can't grow on her own. 
Once she goes to sleep between 9-10pm, I then begin the process of staying up for an hour or two til she's good and out of it to see what I have to do to adjust her oxygen at night, cause the doctor doesn't want it to high, and we know pure oxygen isn't what's best for the lungs. Some nights this means sleeping in her bed, and she is a bed hog, all night or until I can't stand the heat from all the machines in her room, and her knees in my back, and I go to my bed around 3 am to try it get back to sleep. 
Yep, sorry I didn't have time to "remind" anyone that pediatric cancer sucks and we need more funding so no other mom has do this to their child in the future.

Friday, 9-26-14

After my brief and somewhat descriptive post yesterday at just a glimpse I to my life, today I want to flip the "story" today. I am blessed and honored to get up everyday and do those things I wrote of yesterday. Do I get tired? Yep. Do I wish for a break sometimes? Yep. Do I complain? Not on the outside, and not in my inter dialogue because of her or what I have to do. Only that I wish it didn't have to be done. That she were healed from it all. Audrey Assad wrote a powerful song that gets me every time I hear this phrase:
"You say I am blessed because of this
So, I choose to believe
As I carry this cross, You'll carry me
Help me believe it"
And everyday, the Lord's mercies are new, and when I am reminded of that, I am restored. 

They state that every year 24 children a day are diagnosed with cancer and 7 die. That comes to 8,760 kids diagnosed and 2,555 dying a year. Ivee was first diagnosed in 2006, and the statistics are pretty much still the same in that eight year time. Ivee has out lived 20,440 children who have been diagnosed during her years of battling. Some I mourn because they were very close to me. So, how do I feel most days? Extremely blessed in my circumstances. 

To hear Audrey's song follow the link below. Here are the full lyrics to her song "Carry Me". 

Pain is a forest we all get lost in
Between the branches hope can be so hard to see
And in the darkness we've all got questions
We're all just trying to make sense out of suffering but

You say I am blessed because of this
So, I choose to believe
As I carry this cross, You'll carry me
Help me believe it

Fear is a current we all get caught in
And in its motion faith can be so hard to find
And we all falter 'cause we're all broken
We're all just trying to turn the shadows into light but

You get glory in the midst of this
And You're walking with me
And you say I am blessed because of this
So, I choose to believe
As I carry this cross, You'll carry me

And I know Your promises are faithful
And God, I've seen Your goodness in my life
And oh, I've found Your mercy is a river
Your love is an ocean wide

You say I am blessed because of this
You get glory in the midst of this
And You're walking with me

And You say I am blessed because of this
So, I choose to believe
As I carry this cross, as I carry this cross
'Cause as I carry this cross, You'll carry me

You'll carry me, God
You'll carry me
And Your love is an ocean wide

Tuesday, August 26, 2014

Oops

I forgot to post this in August. 
" Ivee's scans came back clear and stable. The doctor even said her scans are getting easier to read, less hazy. I am assuming he meant all the damage from radiation treatment (maybe inflammation) seems to be subsiding."
It is SEPTEMBER. it's childhood cancer awareness month. You may think (but probably haven't), "You know. Hope sure hasn't posted a lot about Childhood Cancer during this month of awareness. Maybe it's not as important as she made it out to be." It's true, I haven't. Why you may ask? (But probably haven't) 

Well, the answer. I'm too busy dealing with the after effects of surgery & treatment from Ivee's cancer, plus being a wife and mom to other people who need me. I know, every bodies busy. But here's my life. It consist of taking care of medical needs, much like a child who has to take care of a elderly parent. My morning begins with an hour of unhooking machines, such as pulse ox, feeding tube, Bipap machine, and oxygen concentrator, giving breathing treatments, rubbing helpful oils on her or diffusing them in the air, and using a cough assist machine to help her "gag" out secretions that built up in her esophagus and airway over night, and using a suction machine to suck those secretions out of her throat and nose. I finally grab a bit to eat, then I spend hours trying to catch Ivee up on school, which involves doing lesson plans and sitting by her side the entire time cause she is easily distracted and must be kept on task. Then I fit in errands, doctor calls, and whatever else may come up. Then my thoughts around three sometimes go, "Oh my gosh, I forgot about supper! Let go see what I can throw together." Then some days, like today, it goes, "Oh wait, Ivee's very congested, let's give her another two breathing treatments, her oxygen is low. Should I take her in for a chest X-ray or wait? No fever, but then again, she doesn't always have fever. No, I think it's all nasal this time."

Once supper is over I clean up and then by seven it's time to begin what I did this morning all over again, but in reverse. Hooking machines back up, giving breathing treatments and shots, cause she can't grow on her own. 

Once she goes to sleep between 9-10pm, I then begin the process of staying up for an hour or two til she's good and out of it to see what I have to do to adjust her oxygen at night, cause the doctor doesn't want it to high, and we know pure oxygen isn't what's best for the lungs. Some nights this means sleeping in her bed, and she is a bed hog, all night or until I can't stand the heat from all the machines in her room, and her knees in my back, and I go to my bed around 3 am to try it get back to sleep. 

Yep, sorry I didn't have time to "remind" anyone that pediatric cancer sucks and we need more funding so no other mom has do this to their child in the future.