About Me

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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.

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.

Thursday, August 14, 2014

St. Jude week

So...I've wanted to sit down and write, but who has time for that?
Updates and upcoming events are as follows.
 Ivee has struggled with congestion. It isn't really mucus, it's just thick, thick saliva. I think she has some allergies, and we used a prescription allergy spray on her. However, I don't think it helps. After the next few events, I'm going to push her to be allergy tested. Obviously, I will have no food allergies, as she doesn't eat by mouth, but seasonal allergies HAVE to be in the picture. For those who do not know the full understanding of her issues, the gist is:
Paralyzed vocal chord=aspiration of saliva
Aspiration of saliva=oxygen absorption problems in lungs, and enzymes getting into the lungs from the saliva that doesn't belong there
She has had to have breathing treatments throughout the day to thin secretions, and then has to heave to get all the secretions up as mom suctions them out with a machine. This all in an effort to keep her oxygen levels in the 90s (if you don't know, we all breath at a 97%+ oxygen intake as normal people, even on our bad days). Ivee breaths at 90-93 on a daily average, and when congested she stays around 88-89. These stats would put most of us in the hospital. She had pneumonia, for the first time ever, in June and the child is still struggling to get back to her normal. She has had a few xrays since in TX, and there has been something on the film to concern her pulmonologist. He believes it might be scarring from a previous illness, but is not certain without the following...Friday she had a CT with contrast dye Friday. We will receive results next week. 
We are in Memphis for MRI cancer scans and other check ups. She is a VERY hard stick, and by the grace of God, someone invented something called a J-Tip so she doesn't feel the shot. Every hospital needs these things! Emla creme and freeze spray are great, but J-Tips have them beat! She was stuck twice today, the first time she flipped, but the second time she was brave, as she keeps stating. We are, once again, praying for clear and stable scans. She is currently in MRI and we see Dr. merchant this afetrnoon. 
Ivee has a tonsillectomy/adenoid scheduled in Sept. She sleeps with a Bipap and oxygen at night, and does have some obstructive sleep apena. (This is quite evident when I am sleeping with  her  at night and she rolls on her back) I know she would benefit from the surgery, but oxygen is a problem, sedation is a problem, and that tiny little mouth is a worry.
PRAYERS- It's what we need, what we always need. Taking care of my little girl is a full time job, and not one that I can call into if I'm sick, tired or need a break. She is our families blessing, but it can be a huge struggle, especially in seasons like this one where I can't seem to do much to help.
I adore all of you that check in, pray and love on us. YOU are a blessing!!!

Friday, June 27, 2014

Oh, wait...the Foleys didn't drop out of existence?

If anyone still comes here to see if I'm still alive and blogging, I apologize. The thing is, I have a lot to say and just no time to sit down at my computer everyday to type it. I feel that words fall flat so many times, and as someone who loves literature, story telling and wants to paint a picture with every word, it is difficult to pull myself away from the daily activities and give into that desire to express my feelings. 
What makes today different? Perhaps it's the fact that it's day five of Ivee being hospitalized for the first time since her last battle with cancer in 2011. 
(Ivee's first night here at the hospital in TX. Mom had just returned from a five day trip with Brittney and friend and came home to this)
Since Ivee's last tumor resection, her lungs have been taking a slow and steady decline. As many of you know, she lost use of her vocal chords at 7 months of age in 2006, but she received use of the left one shortly after that initial brain tumor surgery, and to the doctors surprise, three years later her right chord was moving some. However the tumor resection in '11 knocked both chords out again, and though the left recovered it is not at it's prior strength, and the right never moved again. 
With brain stem/spinal chord pressure and adema (cyst like fluid) in her brain, along with six months chemotherapy and 63 total doses radiation to her brain, Ivee has balance problems and left side weakness, most prevelant in her tongue, if you ever want to see proof. She can walk unassisted now for almost two years without a walker, but she easily falls and has to be quite careful, and has trouble with her gate and right leg. Children who are not aware of her situation, or let's face it oblivious to their surroundings, can be quite an obstacle for her and unfortunately dangerous. I've had to at times, even in front of a parent, reprimand nicely a child who was causing an issue for her. By God's grace, I haven't meet a parent who was upset at me for having to do so. Ivee's personal struggles are not with her unability to do things other kids can do, for she doesn't see her differences, most of the time. She will gladly tell any waiter/waitress or anyone who offers her food, that she is g-button fed. If you're ever so lucky, she'll show it to you before I can stop her from doing so. She will try to keep up with the best of them, trying to walk, or even run, dancing, doing choreography, she will try it all, and does well, except for the running part. But I digress. 
(Doing in hospital PT on the third day. She danced to "Don't Stop Believing" by Journey) 
The one area she can't seem to make progress in and has been declining is her lung strength. We had her tested during this hospital stay, output and input breathing are controlled by different muscles for those who may not know. And not to my surprise, she has great in take volume, but her output is quite below average. This is why you can't here or or sometimes understand what she is saying. We can be in a slightly crowded mall, not too noisy, and I won't be able to hear her at all with all the other noise. This actually happened once, while getting ice cream. As we left the store she was in absolute distress crying, and we didn't notice till we were a but down the mall hall. We hadn't heard her ask for a bite of chocolate to taste test. Broke my heart cause she said, "I was trying to talk to you...(sob,sob)... But you couldn't hear me...(sob,sob)." She doesn't eat by mouth, and really has no desire, which is great, cause she aspirates. But every once in a while, she just wants a taste.
Aspirating is actually our greatest concern for Ivee now. We don't believe that is necessarily what landed her in the hospital at this time, but it is possible that the bacteria in her saliva has lead to her first case of pneumonia, double pneumonia that is. We have seen quite a dramatic decline in her lung health for the last year. In the very beginning of our meetings with the pulmonologist, a tracheotomy  was mentioned, one doctor quite adimate about her needing it immediately, prayerfully the other doctor wanting to exhaust all other options first. Thankfully, the doctors here in Houston are wanting the same, putting a trach as a last option. 
(this picture I took yesterday after she had to be stuck for a seventh time to get her fourth IV. They either kept blowing out or sweeping up) 
So, here on day five, I sit quite sore from sleeping on a hospital couch next to my little girl, an all too familiar sight for the last seven years. I look forward to sleeping in my bed tonight as my husband jumps in the ring for me, but my poor spirit is worried and concerned for what we must do for Ivee. It's not an "unnatural" worry, just a constant reminder of what I learned on December 18, 2006. I am never, nor will I ever be in control, I will never know the future or the outcome of even the smallest problem. All I can do is pray, and my prayers include asking that this be the last time. The last hospital stay, last worry, and that the doctors will find a fix or God will just heal her. I sometimes wish I could punch something, or maybe someone, if I'm quite honest. The only thing harder than watching your kid go through all that I have, is watching them die. At times, I was watching just that happen, and sometimes I realize, I might still be. Not a quick death, if you want to call it that, where cancer just becomes her, but one where what cancer left behind slowly takes her health bit by bit. I know it's a morbid thought, and I don't have it often, but in this post I'm just being honest. I feel very inadequate to be her mom sometimes, wishing I knew how to do more for her. 
Sigh....
But...I have not lost hope, nor have I lost praise for The Lord in all this. I know that human existence comes with suffering, but I also know it comes with perseverance, endurance and need to finish the race, even if it's just crawling or inching our way across the finishline. And today, we are weaning her off oxygen during the day, praying that our new night time regime of BiPAP and oxygen will help her once again dodge a tracheotomy. 
(She's told me she wants to play violin. I brought her a play one back from Cozumel. She is playing along with Imagine Dragons "Radioactive" today) 
Today she is feeling better though quite congested still. We pray they will let us take her home tomorrow. And let me say this as well. It seems that I only blog the hard medical and hospital related stuff, but The Lord is doing much for us as a family since we've moved to Houston. I feel convicted that I need to share those things. So, as an accountability to myself, I am putting out here today. I will blog about the great things happening for us as we are all beginning new and even maybe scary (for some) milestones in our lives. 
Thank you to all of my friends, family and even those who just love us though we've never met. Thank you for your prayers and encouragement and just letting me vent.