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! 

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!

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! 

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! 

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! 

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". 

SONG HERE

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

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.

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!!!

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. 

So...I haven't fallen off the face of the plant....

I did however move to Houston, Texas three weeks ago. I then drove 10 hrs to Memphis yesterday, in cold and rain for Ivee's MRI scan, which she is currently in right now. Ivee meant to update, but I haven't had time between getting a kid in a new school. Unpacking boxes and taking care of Ivee and other things. 

She had a meltdown getting her IV this morning, but other than that she handled it better than last time. We will see Dr. Merchant tomorrow and get the results. Praying the headaches she's complained of lately will just be sinus issues. She is doing better with a CPAP machine and oxygen at night, but we are going to get settled in with new doctors for this in Texas this month....which by the way...I can't believe it is already February. 

Where has the time gone? Man, I love this kid! 

G.I.F.T Day....

Today is the day...

This is the day my baby at 7 months old took a horrible fall from a grocery cart, and God revealed her horrible secret. CANCER! 

My buddy, Ethan (this is him trying on Britt's glasses...she's blind), had his 14th birthday yesterday while I was at St. Jude with Ivee doctors trying to come up with solutions to save her from another surgery. So many times we as a family have had to put normal celebrations on the back burner to help Ivee live, or get better. Ethan knows we will celebrate he and dad's special days when we get to Houston this weekend, but I'm sure he was still bummed. That is, until he got home 

and discovered his broke, older sister (who got THIS shirt from her besty!) had scrapped some money together and bought him a small cake, a donut, and popsicles. She barely was able to shove 14 candles on that tiny cake and quickly sang to him so he could blow out the candles. That's when I knew that we have done something right in the middle of all our struggles and my absence in the last seven years. It's hard enough to meet all your kids needs when your home life is "normal", but it is a true struggle when you have a child with constant medical problems, hospitalizations and constant traveling. But when I see my kids, my marriage, and this journey, I am reminded of what I learned seven years ago...G.I.F.T...God is Faithful and True. 

This girl and I got home last night from our whirlwind trip to Memphis. 

Medically

The pulmonologist spoke to her partner/boss and he said Ivee would benefit from a CPAP machine. So  tomorrow that will be delivered along with a suction machine, to help me get the secretions out of her throat in the morning or when she's sick. The oxygen will go through the face piece of the CPAP machine. We will have to return to Memphis in three weeks to see if it's helping. *sigh

I am grateful I have to make the trip, however. I feel like I should sing that song ..."I would walk 500 hundred miles, and I would walk 500 more".... Luckily, I get to drive. 

My prayer is that all this machinery and treatments will get Ivee to a healthy state of not needing a tracheostomy by a long shot. The concern with a child whose been what she's been through, especially the brain surgeries and double radiation is nacrosis (death of brain tissue and vascular breakdown). If Ivee's lungs don't work well, the oxygen doesn't get to her brain. Not enough oxygen leads to nacrosis, and she's already at risk. 

She's had a few headaches this past month and scans are not until February. I'm not concerned about any tumor being present, but I will be a little anxious to see how the contrast dye looks showing the health of the brain and tissues. 

And let me say how incredibly thankful I am for friends and family who go with me the 14 hour drive (round trip) to these appointments. If They didn't, I would have been alone when I've received some very bad news at times. And this time, my friend, Cathy, had to be a mule. I still can't lift really heavy things, and Ivee's medical suitcase is heavy. Cathy had to load and unload the car, and get Ivee in and out. She has made the trip many times, even short notice. I think she's been as much as my dad, who helps me out often..

Ivee's face sums it up. Life is hectic here trying to prepare for a Christmas trip to Emmett, praying the mechanic finishes fixing my car tomorrow, packing up all we need to take, finding a home in Houston while I'm there, coming home to pack up the house, and then finding the cheapest and easiest way to get it all to Houston, while getting Brittney through her graduation finals, finding Ethan a new school, and finding a whole new network of doctors to take care of all of Ivee's issues. (We will continue her cancer protocols at St. Jude. That will not change, 

It's ...craycray! That's all I can say. BUT...I know where my strength comes from. It comes from The Lord....and it comes from you all! Your encouragement is tremendous. I think you have no idea what your prayers have done for this family, what those little words you post mean to us. I don't know if you know this, but I don't tell people I'm praying  for them, if I'm not. I feel like a liar if I say that, and don't follow through. So, if I say I am praying for you, I am! I believe all of you are the same! I've seen the evidence of it in my life. Thank you friends! 

Answers?...?

I have put off writing this blog, and I have written it and saved it, and returned to see what else I need to say. Now, I'll just leave it alone and publish the thing! 

 First a picture of my heart! 

The first reason I've struggled with writing anything is that after we got back from Memphis, I had to prepare for surgery. I had a hysterectomy the Tuesday before Thanksgiving, and I had no idea how exhausting it would be to recover. Emmett had to leave the Sunday after to go back to Texas and I have been relying on my children and family to help me. Ivee also became sick that week, so she missed school. 

The second reason I put it off is there was just so much I wanted to scream out and I really needed time and a filter. I won't go back and relive all that my mind has been wondering, but here is where we stand right now. 

We'll begin with the priority, which is most of the time, Ivee's health. Many if you know that since her tumor relapse in 2011, Ivee's health has declined. The continued damage from surgery and radiation has played havoc with her sinuses, vocal chord paralysis and lungs. Mind you, this is all related to brain damage. This was why the sleep study was so important, especially after we discovered that she aspirated her secretions. 

The sleep study reveals that she does obstruct her airway multiple times in an hour, roughly every 3.75 minutes. Her O2 while awake stayed in the 90s, but once she was asleep it stayed in the upper 80s. Unfortunately, quite a few times it dipped below 80 and even once went down to 58. (I am not convinced that the sensures always work correctly) but I do believe the 80s is correct. In the morning, they drew a blood sample to check the carbon dioxide in her blood stream, and it was in a quite uncomfortable range. 

Due to the results of the test, we began Ivee on a regimen to have breathing treatments, two different kinds, and a cough assist treatment every morning and night to try to get her secretions out, and do this multiple times a day when she is sick. We also put her on oxygen at night while she is sleeping. After a Pulsoc Symetry Study at home, we found that she stays in the 90s 55% of the time and did not drop below 80. Though this is an improvement, this is not solving her problems. 

This is what leads us to our tough decision and heartache. The ENT and pulmonologist have meet together to discuss the options, and they feel Ivee needs a tracheostomy. 

I am mad, hurt, and desperate to not put my daughter through one more hellish surgery and have one more foreign object put in her body. To have more set backs when she has come so far!? I've cried, gotten angry, and have calmed down. I didn't want to get on Skype and tell my poor husband one more bit of bad news that has seem to come in a never ending stream since he left for TX. But, we talked, we've come to an agreement and we are pressing forward as we always have to do. 

The plan, as of today-  Ivee and I will go to St. Jude Monday/Tuesday to meet with her pulmonologist and oncologist. We will get information about doctors at Texas Children's Hospital and I will leave with the appropriate medical files I need to get a second opinion. If for no other reason, this is the reason why we have been moved to Houston. Ivee will have a team of doctors in closer proximity to her that can help us with her lungs, throat, GI, orthopedics and therapies. We will find what she needs and we will get through this obstacle as we have always done for the last 7 years. And...we know God has this! 

Our goal is to get to TX as soon as I can. Britt graduates early on Januray 10th, barring that she past all her final exams. Emmett hopes to have enough money saved to get us in a rental property. We pray the house sells by the end of December/January, or we are able to get it rented/lease purchased. 

In the meantime, while I am recovering well from surgery, I still cannot lift anything heavy, but will be trying to pack all that I can in the house. If I don't need it or really want it, I guess I need to have a moving sale. 

We have our seasons here. Sometimes we are on the mountain top, and sometimes we are struggling to stay afloat in the stormy lake at the bottom of the valley. Through it all, I've learned to trust in Jesus. I have decided to not send Ivee back to school. I sent her yesterday, before I received the news, and she came home feeling puny and has declined since then. I will be homeschooling her during this transition, until we get her help physically. So, that maybe for a long time, but I'm in this to the finish. How could I not be?! 

I've got this cutie counting on me. 

Say a prayer, or a thousand, for us. I know so many of you have never stopped praying for my family and my sweet girl. The Lord has been good to us, and in my human and feeble mind, I am so easy to forget how far we've come in these long 7 years. 

"When leave like a river, attendeth my way

When sorrows like sea billows roll

Whatever my lot, Thou has taught me to say

It is well, it is well with my soul."

-Horatio Spafford-

Sleep study

Two words: Hated It! 

She did, and who can blame her! Look at all these wires! 

And it took over an hour to get it all done, then we moved her, then we had to fix leads that weren't working. She only managed to disconnect the probes in her left leg while asleep. I think we are going to get much needed answers from all if this, hopefully by tomorrow. 

Our night in Memphis

Today has been a long, full day of appointments here in Memphis. 

We began our day with Pulmonology, where Ivee's congestion has been consistent, we confirmed her O2 saturation just doesn't want to stay in the 90s. The doctor added chest film, upper GI films, and an echocardiogram. In eye clinic we found her vision has not gotten any worse, really. New glasses are needed, but looks like eye surgery is not even a thought now. 

The chest X-ray must have been clear, but I'll find out for certain tomorrow. He upper GI showed no reflux, same as the one she had two years ago. Don't know how the echo looked, no results yet. Hoping to find out all those results tomorrow. ENT doc and pulmonologist are in some agreement about our next steps with Ivee. A determination will be made after she completes her sleep study tonight. 

And that's where we are currently, in a room in he sleep clinic at Le Bonheur Children's. We will see what is I store for Ivee after this. It is a lot to discuss and take in, and I don't really want to go into detail until I have Strong facts. 

So, I will sleep in the room next to my girl tonight, praying that she sleeps as she normally does, and we get a clear understanding of her sleep patterns, and her oxygen saturation. 

We will return home tomorrow after we drop by the Jude to see the nurse practioner. 

Thursday I have a pre-op appointment for my surgery next Tuesday. Emmett is currently in Texas and will be home this weekend. The St. Jude Give Thanks walk is Saturday, and I have to prepare the house for the realtor to hold a open house showing on Sunday. 

Pause.....just breathe! 

Thank you, friends, for checking in on us. I'm not going to proof this post, so sorry for any mistakes. Have a great night! 

Big News and more

First, let me just say. I am beyond blessed with amazing people in my life. Many I have never even met, but they are just as important as those I can physically touch or personally talk to. They all have supported our family through comments, checking in, and praying for us. Many have also donated to my Give Thanks for St. Jude Walk in honor of my Ivee. 

I am proud to announce, Team Ivee has surpassed its initial goal of $1,500.00. We are so thrilled we are pushing for $2,000.00 by November 23. This  would be a huge, amazing blessing for the families of St. Jude and anyone affected by the hospitals research! This placed has tried and many times succeeded in saving these children's lives, my Ivee in that surviving statistic. Her battle is not over, however, and I must continue to fight for funding so she can continue to fight to live here on this earth. If you are feeling thankful and giving, how about supporting my efforts and giving a tax deductible donation to St. Jude. It will mean the world to a family in need, especially during the holiday season. We spent our first Christmas and Ivee's 1st birthday in the hospital. These families have enough to worry about than financial problems. 

If you would like to give online, click this link. ST. JUDE GIVE THANKS< TEAM IVEE. 

If you would like to mail a check to me, written out to St. Jude Childrens Research Hospital, Email me at hopealations@hotmail.com and I will give you instructions. Checks need to be mailed by November 19th.

Now....the BIG NEWS!

The Foley Family is making a move. Emmett has accepted an offer in Houston, Texas, and we are excited and anxious all at the same time. The children and I won't be moving out immediately. Well, here is my post from Facebook, so I don't have to type twice.

"Well, I can officially post it. As I sit here in the dark, because the transformer exploded 20 minutes ago, I am wondering at what all has transpired since last Thursday. In a whirlwind of quick happenings, the Foley family is preparing, with the Lord's help, to move to Houston, Texas. To make a long story short, Em and I have felt we were being prepared for a big change, for two years now. We put the house up for sale 3+ weeks ago, just telling God he can do what he needs. We could sell it or not. Then Emmett got a phone call out if no where last Thursday and in less than 48 hrs was offered a job. When he was unsure if he was doing what he was suppose too, God kept making things happen that screamed, yes, this is me opening the door. Em will be moving in mid November. The house hasn't sold, but the kids and I aren't leaving until at least after January 10 when Brittney completes her high school education. We will see what The Lord has in store for this house. We are praying for amazing people to buy it so our amazing neighbors will like them! I will miss this house, not as much as Ivee, though, who has only known life here. Many memories, good and bad, and a battle for her life was fought within these walls, twice. So, now I ask for new prayers from you, friends."

We plan on keeping all our commitments here at home. Ivee is the queen of the St. Jude Mari Gras Ball February 8th. We are inviting people to buy tickets and participate!!! It's going to be an awesome night. For more info click here. 

Brittney will have Prom in April and Graduation in May. I'm looking at this house full of furniture and stuff, and I am a bit overwhelmed. God, however, is good and I know that I'll get it all squared away one way or the other. That or it's all going up for sale! 

Ugh! Does anybody hear me?

So...I am having a blah week. 

Ivee has been home from school all week, so far, with fever and congestion. The congestion seems to never go away. She's been more productive with it this morning. 

My computer is crashing since I installed MagicJack on it. The PC upstairs slowly declined after a year of having the program on it, it's a newer PC. Didn't think It had anything to do with the program, until now. My notebook is older, but was working fine until Friday last week. I uninstalled the program, but it is running Extremely slow and freezes and the virus protection won't turn on! 

I'm in a rut it seems. I'm not necessarily coming unglued or in need of a Calgon bath, but I would feel more useful if I could fix any of these problems....mainly Ivee. 

It was heavy day yesterday in out little town. Carlin Davis, a 12 year old who lives here, was a St. Jude patient diagnosed with DIPG in August of 2012. She suddenly passed away yesterday morning, leaving behind a grieving mom, dad, brother, and sister. I hate cancer! It steals or destroys so many things. I don't understand why childhood cancer can't get the same funding as breast cancer or other adult cancers. These kids only 10% of what breast cancer gets from the government or fundraising processes. It gets 1% of a dollar from The American Cancer Society and Realy for Life.

I don't understand how I can't get people to help me reach my goal for the St. Jude Give Thanks Walk. 

I had a fellow Ependy mom, who lost her little boy to Ependymoma post this on FB yesterday. 

 

I think I just needed to pour that out! Thanks for checking in and listening to my rants. 

If you would like to join TEAM IVEE or give a donation, just click the link below. 

Thanks. 

 

Click link to support TEAM IVEE

http://fundraising.stjude.org/site/TR/Walk/Walk?px=2064530&pg=personal&fr_id=8310

MRI and Saliva Gram

Ivee's MRI was clean and stable. That is the best news.

But, while we were up there this visit, Ivee had a saliva gram, a nuclear test to see where her saliva goes. The results reveal that Ivee aspirates her secretions. We will return to Memphis in November for doctor visits and a sleep study and hopefully more answers. Then we will search for helpful remedies.

This journey seems to never end.

September is Childhood Cancer Month...a month is not enough.
It's too late for Ivee to have better options, but I pray children diagnosed after her will have better treatment and surgery choices so they have a chance at a normal life.
We can make that happen through action.

If you would support us, we are doing the St. Jude Give Thanks Walk. Please support Team Ivee.
Click this link to help and support our efforts.
http://fundraising.stjude.org/site/TR/Walk/Walk?px=2064530&pg=personal&fr_id=8310

Scan day

Waiting for her MRI. Getting an IV was a quite an event this morning. She will get used to it, it's just scary. We have a lot of other testing that needs to be done for Ivee per her pulmonologist. Looks like we will have to return to St. Jude in a out two months for a sleep study, saliva tract study, and we'll be getting some new home equipment such as a cough assist machine. 

Prayers and more

It's been a while since I've updated. Found myself at the pc to type, and just didn't feel feel like it. A summer full of two foot surgeries left be feeling blah! 

 Ivee is well, but congested. We got to St. Jude yesterday, and have began her appointments today. MRI is scheduled for tomorrow. We need prayer for breathing, congestion and O2 and for her to be cleared for sedation. Then prayers for clear and healthy scans. 

Lost during Sacrifice.

I know I have been posting about Brain Tumor Warriors, but today I honor those who gave their lives intentionally. 

Last August, I got the privilege of taking my kids along with my dad to Arlington Cemetery. It made my heart proud and heavy to see the acre after acres, row after rows of service men and women laid to rest there. They gave the greatest sacrifice in courage to assure my freedom and the freedom of my kids. Don't let today go by today without giving them the honor they deserve. (This is a picture I took of the "Changing of the Guard" at the Tomb of the Unknown Solider....God knows his name and he maybe unknown to us, but not forgotten)