Brain Tumor Awareness Month

First: We could use your prayers today. Ivee has to have her subcutaneous port flushed every four weeks. This has been the case for almost 6 years. It was easy to access her when she was a baby, but know...it is getting harder, and harder! She is scared, she says it hurts and momma just can't watch it much longer. We manage to get the needle in yesterday, but could not get blood return. So we will have to try again today. Please, pray that this can happen, and that Ivee (and momma) will be okay. (The picture below is not of Ivee, but this is the same process that we have to do every month) It is a large gag needle, and quite intimidating. We are possibly looking at having the port surgically removed this Summer. It makes accessing her easier, but since we are going to 6 month scans, I just can't justify having home health access her 10 out of 12 months for nothing. This would mean, however, a needle stick and finding a vein every 6 months in Memphis, which, with Ivee's cubbiness and veins, might prove difficult. Hard decisions to me made here. Just need prayers to get through this afternoons stick! 

Second: I don't really like to blog everyday. I have an ADD/OCD mind and I am very distracted by some many things I NEED to do. But, this month I want to honor and remember some very brave and inspiring people. I am going to attempt, EVERYDAY, to honor or remember someone who has battled, still battling or has lost their life to a brain tumor. I want to remember how they have touched my life. I missed May 1, so today I will share two heros. 

May is Brain Tumor Awareness Month

In Memory of 

Johnny Sileno

July 3, 2004 - July 4, 2010

In 2007 - Johnny was the first Ependymoma Brain Tumor patient that Ivee and I ever met, and Ivee will never remember him, but I will NEVER forget him or his parents. I remember coming to St. Jude for the first time and seeing this bright eyed little boy being admired and just fawned over by his daddy, John in the RO waiting room. Johnny had just had his second brain tumor removed, and was there to begin his second round of radiation. We lived together breifly at the RMH in Memphis as we began radiation treatment and he was finishing his rounds. I got the nerve to speak up one day when I heard his mother, Jennine speaking to someone else about Johnny's ependymoma. I remember feeling like my heart would burst when I heard that someone else in the room with me had the same aggressive cancer my daughter had...and at that moment...I didn't feel so alone. I followed Johnny's journey through emails and internet as he continued to battle his third and fourth/and final tumor. I was encouraged by his parents faith and fight and their undying love for their baby. They created a foundation in Johnny's name to help give financial support to families battling childhood cancer that need help with monetary things. They have not stopped, and continue to fight the war on childhood cancer. You can give your support to Johnny's foundation and hear their story at

http://www.thejohnnysilenowishesforwellness.com/

In Honor of 

Matilda Campbell Reidhead

In the summer of 2009, I happened upon a family who had just discovered that their third and youngest child was battling for her life with ependymoma. I reached out to them, knowing what it was like not knowing anyone in the "ependy" world and feeling very alone. They two months before diagnosis, like us, had been exploring if their child had a food allergy or breathing/asthma issues. They knew something was wrong, but never in a million years though a brain tumor was the issue. A sudden on set of hydrocephalus had Matilda admitted and a CT scan performed. A few days later at 15 months old, she underwent surgery and had a successful, almost gross total resection of the tumor.  Matilda endured four months of hard chemo, 6 blood transfusions, shunt placement, and 26 rounds of proton beam radiation, ending treatment in the Spring of 2010. She endured a shunt revision in November of 2010, but she continues to receive great reports, clear and stable MRI scans and is flourishing. Love to Matilda the Amazing, and adorable!! 

Whom shall I fear? WHAT shall I fear!!!!

Lately, I have been drawn to particular songs. I love the melody, but it's the words that have this song running through my distracted mind this morning. 

This is Chris Tomlin at Passion 2013 singing "Whom Shall I Fear"

(Here is the video with the lyrics. If you haven't heard it or want to read the lyrics-written at the bottom of the page, I would encourage you too) 

Today, I found myself saying "What" shall I fear? I received a phone call from our very beloved Nurse Christy yesterday as I was beginning my subbing day at the elementary school. (She is Dr. Merchant's nurse, and ANYTIME I need answers or just to talk, I can call her or shoot her an email. She is never too busy and is more than eager to help in anyway that she can.) She wanted to clarify some updates through emails we had been shooting back and forth. My concern being that Ivee's appointments were suppose to be at the end of July/beginning of August, and were scheduled in September, after school started.
Dr. Merchant is very adamant about Ivee seeing a pulmonologist on our next visit to the Jude. She has so many issues with sickness and has had some O2 saturation issues lately, especially back in February when we couldn't do her scan. The pulmonologist is only in the hospital a couple of times a month. (St. Jude has many outside doctors that come and help with their patients) So, they have to try to schedule her appointments so we can see the pulmonologist.
Well, as she was explaining his continued concerns about these things, Christy broke the news to me. Dr. Merchant wants to push Ivee out to 6 months scans.
*My heart and chest tightened and I felt a throbbing in my ears. I had a flood of different emotions. Let me see if I can even begin to explain....*
You know from the beginning that if your child is going to beat this monster of Ependymoma, that eventually she won't need the MRIs every 3/4 months. Usually, this jump from 3/4 months to 6 months is the 3 year mark post treatment. That is/was the plan/process with her first occurance. We reached the 3 year mark in August of 2010 when Ivee had reached the three year anniversary of her "end of treatment" of her 2006 brain tumor diagnosis. It was after that milestone anniversary and her scan in July 2010 that she began 6 months scans. It was also after that time that on her first 6 month scan, in Jaunary 2011, we found out Ivee's cancer had returned with no outer signs of tumor growth.
Now, here we are not even two years out from the end of her second radiation treatment and we are being cleared for 6 month scans. Nurse Christy asked me if I was okay with the changes. After a deep sigh and breath, all I could say is, "Well, it makes me nervous and scared, but we know this day has to come. I trust Dr. Merchant, and if he is comfortable with this move, I will have to trust it is the right decision." She definitely told me she completely understood, and assured me that if at anytime I felt something was wrong, all I have to do is make a phone call and they would bring us straight up.
I found it to be not as hard bringing it up to Emmett last night. Maybe cause I've had to tell him so many horrible things in the last 7 years and this wasn't so awful. I could see the tears swell in his eyes. As we laid down to go to sleep last night, we talked about it. He had the same reaction I did. Just a flood of different emotions. We did know this day had to come. We are full of mixed emotions still. We are excited that Dr. Merchant thinks she is going to be healed of this disease. (Not that he has said it out loud, but actions speak loudly in the medical world as well) We are happy we won't have to travel to Memphis 4 times a year, now it will just be 2 times. We are fearful of the time from one scan to the next. We will have to depend on our knowledge of our daughters body. We will have to watch much more closely for signs of tumor return and shunt malfunction. I don't really like counting on myself for this. That probably gives me the most worry.

BUT....I am reminded...Why should I fear? Whom shall I fear? What shall I fear? Nothing. I have believed in God for the healing of Ivee's body...completely. I will not let the enemy try to place fear in my mind and affect what I know in my heart. That GOD is in control. I feel his promises daily. I will remind myself of those promises, and I will remind the Lord of them.

So, this "song" above I leave with you.....

You hear me when I call
You are my morning song
Though darkness fills the night
It cannot hide the lightWhom shall I fear

You crush the enemy
Underneath my feet
You are my sword and shield
Though troubles linger stillWhom shall I fear

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my sideThe one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

My strength is in Your name
For You alone can save
You will deliver me
Yours is the victoryWhom shall I fear

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my sideThe one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

And nothing formed against me shall stand
You hold the whole world in Your hands
I'm holding on to Your promisesYou are faithful

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my sideThe one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

(Chris Tomlin: Whom Shall I Fear: God of Angel Armies) 

Not for the faint of heart...

     First, let me state. Ivee's MRI was good. No changes, for the worse or better. She has no sign of Tumor and the other changes from surgeries and radiation are stable. I am unbelievably grateful to GOD, the hospital, doctors, financial backers and to those who pray for her!!!! She is my sunshine, and holds my heart. Emmett and I will often look at each other and say, "How did WE (you and me) end up with such a sweet child?" If you know us, you know why I say this. Not that Emmett and I don't have a caring spirit, but we constantly are pickers, teasers and sarcastic. This child doesn't seem that she belongs to us at all. God has something special in store for her...is just know it. I mean, look at how many lives she has touched in just 6 years!?

     For my local friends, we are looking for support. The Next Cookie for Kid's Cancer Event happening is April 27th in Bay Minette. All you need to know to support it by coming out, buying a t-shirt or sponsering is at this website. http://www.thecookiemomsters.com/events.php

     Now...I'm going to continue this post, but if you don't want to read about the hardness of this life, don't read on.

     Friends of mine from the pediatric cancer world (PCW) lost there baby to DIPG over a year 4 months ago. Another friend of hers from the PCW lost her child to DIPG, as well, a week ago. That family did something I don't think I could do.This mother and father, in their most desperate moment, the time where I'm sure only grief entered their thoughts, filmed "The leaving of Miette". It was not a film about her death, but about what happens after. It was that moment after their baby had passed and they had to pick her up and take her to the gurney to be taken away to prepare her for the funeral. I wasn't sure if I wanted to watch this video. I know so many who have lost their babies...I mean, look at the ^^angel wings^^ to the left of my screen.
     I have imagined that moment with Ivee too many times, and am never proud that I have. I don't want to imagine it...it is just something that happens. The thoughts always creep in. It mostly happens right after diagnosis...or during treatment...but mostly...when you hear that another child has died. I thought for a moment, wondering if I really wanted to watch. I thought about the parents and why they did it. I was for one reason and one reason only.

 ______We need a CURE!!!________

We need to find a way to stop this monster. I watched if for....

^^Aaron B.^^ -Ependy 2/20/13

^^Aaron G^^Ependy-12/7/11

^^Anderson^^ ependy-07/11

^^Ausman^^Ependy- 2009

^^Avery Ann^^-Ependy-2008

^^Brandon^^ DIPG-3-31-12

^^Brayden^^ Ependy-2006

^^Christian^^-Ependy-2008

^^Daniel^^ Ependy-3-22-12

^^Dorian^^*-Ependy2011

^^Erin^^Ependy- 2009

^^Fredrick^^ ependy -07/11

^^Johnny^^-Ependy-7/4/10 *

^^Justin^^-medulla-1/29/2012

^^Lanie^^ -Medulla-11/16/11

^^Lyssie^^ Ependy 10-2011

^^Myah^^*DIPG-12/6/11

^^Sophia^^Ependy-2006

^^Tyler^^ Medulla-2008

     I watched it for the 42 children diagnosed today with cancer. For the 7 children who will lose their battle today. I watched it for Ivee. We have to do something. Bring awareness to the for front. I understand why we see PINK everywhere, and honestly, there is a huge "market" for breast cancer. Research is so vital, that is why there is a greater chance for those facing breast cancer now. When will our children have that better chance? 

     THANK YOU to all who support Cookies for Kids Cancer, St. Baldricks, and St. Jude Children's Research Hospital. My gratitude can never be enough! 

     I am not going to share the video of "Miette leaving" with you. If you "feel" you need to watch the video you can find it on youtube. It is a very difficult video to watch and I honestly don't know what kind of people read my blog. I would hope most of you read it because you love and pray for my Ivee. BUT, I've had friends lives stolen from their blogs and someone creating a blog and living a false life vicariously through my friends griefs and struggles. I also don't want to share it on here for those who are upset by all of this. It is a very difficult road, and this family doesn't need any more grief from it all. They didn't really want to share this with the whole world, but I know MANY grieving parents who do what they don't want to just to try to save other families from having to watch their child suffer. 

     So, I apologize if I upset anyone with this blog. Blogs, however, are not necessarily for the reader, but for the writer. It really has been that for me, especially this post. I'm just sharing my heart. Today, it hurts. 

Keep praying, keep believing, and keep fighting!!!!

Ivee's scans

Ivee has her MRI scan in the morning. Praying her congestion stays away. Praying for clean/stable scan!!!!

New Scan Date

Yep...Those are my girls!!!! She does love that Brittney!!! I think the feeling is mutual!!

   

The date has been set. Brittney and I are taking Ivee back to Memphis for an MRI on March 25th. Right now, there is a stomach virus going around her classroom. We really NEED her well for this scan. Please, pray she doesn't catch this virus, that her 02 saturation will increase, that her secretions will loosen up and that any problems will just go away. And finally, pray for clean/stable scans! 

We had plans to meet with a pulmonologist while there, but they couldn't get an appointment with him/her until May, so that will not be happening. I have a pulse oximeter (check heart beats per minute and oxygen saturation) and have been keeping up with her stats. Her heart rate is a little high at times, but I believe that is due to the albuterol. Her 02 stats have been in the mid to low 90s. My concern, if Ivee's lungs are functioning fine and at close to 100%, would be the flattening on her brain stem that we've been watching since 2008. (This is the reason she had the scar tissue removal surgery in 2008, that lead to meningitis, that lead to a shunt placement). I am not a "worrier", but I do try to think things through and I do have concerns. My thoughts are that it is still because of the congestion to her sinuses that her numbers aren't around the mid to upper 90s. Still, these numbers are not common for her "normal" stats when we are in the sedation room every three months. I will be taking the oximeter with us to confirm that it is giving accurate readings (when compared to the more expensive and hopefully accurate machines of St. Jude).

 
                 

BUT, let me say. I know where my help comes from. My help comes from the Lord...the Healer, the Maker, Creator of me, you, Ivee, the heavens and the earth! So, I am asking God's hand of protection and his mercy upon her life and upon my heart. Scanxiety doesn't escape anyone with a severe medical problem, especially we parents of children who have fought the beast of brain cancer. The brain is the ruler of our body systems, and it is just scary to think about all that injury my baby's brain has endured. But, the miracle of her being here and doing what she can do makes me unbelievably grateful EVERY day! 

   

Trips, field trips, Special Olympics and Awards

Trying to play catch up on all that has happened. I have become laxed in my Blogging over the last few years, but it honestly takes a bit of time to sit down and do this! 

First I'll update then I'll share pics. As you read from my last blog, the MRI didn't happen. We are trying to get back to Memphis the last week of March, our Spring Break. She will see ENT and now a pulmonologist first. We always have respiratory problems, and we need to have a handle on it before any sedation. Please, pray that we can get the appointments, and that Ivee would continue to get better. She is still struggling with congestion, but it is sloooooowly getting better! 

I posted about some of the updates from our Memphis Trip. Of course, every trip to Memphis begins with a car full of "mostly" Ivee's stuff. This is what it is like to go just on a four day trip with her. (Of course, Pawpaw was tagging along this trip so the two small duffle bags on the end are his and 1 suitcase is mine)

 

 Ivee was VERY interested in the new construction at St. Jude. One of the employees who was having lunch next to where she wanted to go "look" was very engaging and interactive with her.

This is the new Proton Radiation area being built underground. I am so excited about this addition. Ivee didn't get to benefit from this new form of radiation, but so many kids will now be able to receive it here in Memphis when the construction is done. Right now, all the St. Jude patients needing this type of radiation are sent to Massachusetts and Jacksonville, FL. 

Ivee had the opportunity to meet some of the professional basketball team players from the Memphis Grizzlies. The Grizzlies support the on campus hotel facilities that we are privileged to use every time we go for a short stay. Here she is with Marc Gaslo. Every player was tall, but Marc stand 7' 1" and Ivee has never seen people so tall. She was not intimidated in the least!!!

I have waited for the day that Ivee would walk the halls of St. Jude unassisted. Even though she didn't have her MRI due to issues with congestion and O2 saturation, she walked herself into the MRI sedation room! 

I just wanted to share the new statue outside the Chili's Care Center. It is my favorite now of all the statues on campus. It is a representation of the Genome project. Isn't it just so fun!!!

Once we got back from Memphis, Ivee had a field trip to the zoo with school. We always have our "candid" bus drive snapshot!

I gave Ivee the digital camera (the cheaper one) and let her have at it. She's pretty good. She can take some good shots sometimes. Here 4 of her shots. 

Yeah...not all of her shots are great...love it!!! 

 

I love taking these trips with my children!!!

To end that week of school, Ivee participated in her first Special Olympics. It was a very emotional day for me. Looking around at all the special children there. Knowing the hearts of the parents of so many of these kids. The spirit of Hope was abounding. It was all I could do not to cry that day. She has come so far!!! She is a miracle! Here I watched my baby walk in front of her school banner as they passed in front of the stands. All I could think was, those initial doctors told me that with a 13% chance of survival...this day would never come. Well, my God said differently, and I watched my Ivee walk proudly, and though with a walker, she did it on her own! 

She stood there on the field with her classmates.

Her first event was the tennis ball throw (for age 8 and under) 

She won a third place ribbon! 

She was the most excited about the assisted run race. 

We had her hold her aid, Ms. Cheryl's hand, but we should have let her use that walker.

If she had used the walker, I think we would've had a first place ribbon.

But, she was proud of that second place ribbon. She is competitive, but she just likes to race. She made me race her, then Ms. Cheryl, then some of her classmates. 

I ended her day letting her take my camera. She took great pics, many I don't feel I should share since classmates are in it and I don't have permission from all of their parents. But, here's one she took of momma!

Today Ethan was chosen as the honor student for Art for the entire school. He and Brittney are extremely talented. Soon, I'm going to scan some their art and share it with all of you! 

I'm so proud of you Ethan. 

From Memphis...

Okay, so the update on Ivee. Gonna try to keep it short. 

1. Eye clinic: right eye isn't any better, but no worse as far as prescription is concerned. The patching isn't improving her vision, but if we weren't patching, it would  be so much worse. The short end of it...original cancer surgery caused the brain to shut that eye off when they crossed. Some vision came back when we began patching 4 years ago. It is a significant vision lose, only near sighted, she can't see far away. The right eye veers off more and more often. We will do some exercises to try to strengthen it, but we are possibly looking at eye muscle surgery. 

2. ENT clinic: No good news here. We are stuck. Ivee suffers from radiological chronic sinus issues. Radiation has affected her sinus passages causing her secretions to be thick and it will be this way. That's it. We will continue doing what we are doing, but we will keep a warm humidifier in her room from now on as well. We will treat her as  infections come and go with antibiotics. She will find it easier to deal with as she gets older, and she learns how to clear it. Either by blowing her nose, coughing, learning how to spit, etc. all which is difficult for her due to vocal cord paralysis and the inability to control throat and tongue muscles. 

3. Scan: Yesterday  Ivee's blood pressure and pulse were high. This is probably due to the albuterol treatments and Sudafed. Both can increase heart rate. As we went back for her scan we checked her stats, and she was a tad bit lower, but Ivee's O2 stats began around 85 and would pretty much stay there. There were times I had are her cry or made her cough, he would come up to the mid 90's, but she falls right back down to 85 or lower. So, without intibation, it wasn't happening. I didn't want to inibate, because it makes it very hard on her vocal cords. Dr. Merchant wasn't to keen on sedating her as well. He has nothing against intibating, but with all the damage/issues to Ivee's brain stem, he didn't want to chance anything with her respiratory system. He stated that he would be comfortable waiting a few months to scan being that there was nothing significant of concern on the last scan. Emmett and I are less comfortable waiting (Emmett for sure!) but we are trusting that she is healed any way. So, I'm going to keep in touch with nurse Christy, and we will try to get her up here for scans when she is having a good week with her sinuses. Yea...let's see how that works out. 

4. Tomorrow we see GI and Endocrine. We will address the constipation and stomach issues. 

5. In good news. She has gained 2+ pounds since November and grown 1 inch. This is since she started GH on December 6th. 

A long day...

Beginning a long day of appointments here at St. Jude. Ivee contracted a fever Monday night, but the next morning it was gone. The NP from her clinic gave her a kick of antibiotic intravenously yesterday for her sinuses. We see eye and ENT today, so we will hopefully see what the docs think of her eye veering and the chronic sinusitis that she's been dealing with for years. MRI is bright and early in the morning, and we will also look at her sinuses then as well as the brain. Praying for answers on so many levels. She is still struggling with her bowels as well. The prune juice worked for a while, but now it seems to be slowing again.

Today is the last day to call...

This is our local country radio station. They are the greatest St. Jude supporters around. Call today and support Ivee and other kids with your pledge/donation.

^^Angel Wings^^

     Every time I have to change a link at the left with ^^angel^^ wings around a child's name...I am so saddened.  I don't believe that we become angels when we go to heaven, but I do believe we are transformed, made whole...we are completely healed. All the worries of this life pass away, and Christ is made the purpose and focus of our being.
     Yesterday Aaron Bell became new, healed and whole. I have a heavy heart anytime we loss another child to cancer. When we lose a ependymoma fighter, my mind feels so heavy. They are so close to my heart being that they and Ivee have battled the exact same monster. For Aaron, my heart was especially heavy. Most children that I know fighting ependys are young, and most pass away from earth to heaven under the age of 6. Aaron was a few weeks shy of his 17th birthday. He and Brittney are the same age. I thought about the weight he cared in his heart, knowing that he was facing death and leaving his mom and dad behind. I have a great imagination, that sometimes isn't so great when I let it wonder. I was putting Brittney in his place. What if it were Brittney, not Ivee, that had been battling this for 7 years? What if she was the one having to deal with the uncertainty? I couldn't imagine the thoughts going through Aaron's mind. After they discovered that Aaron was going into an end stage, he requested that his mom not cry in front of him cause it upset him. What a hard request, and how Kristie tried her best to make that a reality. My prayer in my heart was that Aaron's struggle at the end would go quickly. I had other friends who watched their child struggle day after day, just hoping that it would come to an end, and it just keep going and going. I know God heard my prayer and I don't know that he did it because of me, but Aaron digressed quickly, and I was shocked to see that he went home to heaven yesterday evening.

     Please, pray for Kristie and Chris as they will miss their only child Aaron so much. If you would like to leave a word of faith and encouragement, Aaron's CB site is on the left side of my screen. (^^Aaron B^^
     And not that this would ever come at a good time, but my heart and body get a little heavy when Ivee's MRI is so close to the passing of one of our kids. Please, pray for this momma's heart and mind as Ivee has her MRI on February 27th. Pray that her sinuses and stomach continue to heal. She is still very congested and has to be sedated for that day. Pray that the prune juice will still continue to work. Pray we get answers about her stomach from GI and for her chronic sinusitis from ENT. Pray for safe travels and pray for Emmett and the kids as we have to once again leave them behind. Somebodies gotta work, but Emmett, Ivee, and I always wish he could go with us. Ivee loves her daddy so much! 

A day of meanings....

      Everyday in our family holds meaning. Another day to live, love and be more like Jesus. February 18th holds a few memories for me. Some I don't share, but the memory that is the most vivid is of my Ivee. This day, 2 years ago in 2011, Ivee underwent her last brain surgery (knock on wood)! Her cancer coming back was a surprise to me and Dr. Merchant. She had no symptoms when we discovered it via MRI that January. But, here we were, in Memphis, TN as she underwent her fight to beat cancer again. Another year marks another milestone. Brittney and I were talking a few weeks ago, and she made a statement. "I remember some of my life before Ivee, but so much has happened in the last 6 years since she's been born, that I don't really remember life without her and cancer."
      You would make think that her statement made me sad, but honestly, I feel blessed. My kids are "typical" kids and they don't really know a "normal" life. BUT, they have been given a testimony. They know that life is short and there is no time for the trivial things. Like I said, they are normal kids. They want to do what is meaningful to them. Ethan is probably a little more "typical" then Brittney. He is still in "me" mode. But, Brittney has made me so proud. She has her moments, but she is a great big sister, and she takes care of Ivee like she was her own, cause she is. Ethan does do for her as well, even though he is in the "aggravation" mode when it's comes to her. I am hearing so much, "Stop it Ethan," lately. Sometimes he has aggravated her so much, he can just walk by her dancing and she says it. He looks at me and says, "I didn't do anything." That is when I remind him that if you aggravate someone enough, they think everything you do is to aggravate them! I'm sure that went in one ear and out the other.
     Time to do a little picture catch up.

This is Ivee at New Years. She was so cute wobbling around pointing her cousin Nathan's laser gun. 

Ivee just loves for me to pull out the camera and take random shots. 

Above is us in the doctors office waiting. 

Ivee has also had an obsession with putting napkins on her head for the last three years. Her Brittney has no issue in joining her in her napkin wear. I love how my 16 year old loves her baby sister!!

Emmett and I have a growing group of kids who hang at our house and church every week. Emmett and I open our home to kids 12-20 years old every Friday night for about a year now. We serve them supper, they listen to Emmett give testimony and read the Word, and then we usually play Just Dance. I enjoy these kids so much. This is a pic of a few at an Underground Mobile event. 

Brittney had her first medical procedure this past week. Her Endoscopy showed nothing that helped us with her stomach issues, but her drugs gave us all something to laugh about...including Brittney.  

Cousin Nathan's birthday lead to a good time. She loved the slide even if it was cold. Whitney and Haley enjoyed their time with their cousin as well! 

Ivee took one day with  her cousin Haley and played dress up. Here is my Merida!!!

I didn't post any Christmas pics this past year, but my kids have so much fun dancing together. 

We also don't eat out much, well, like we used to, but Ethan still dazes out when eating Mexican! :) 

Finally, here is my Ivee as school. Mom came for the party that day. Love this baby so much!!

Quick update

I had a not so great day last Friday. Frustrated that I didn't know what was wrong with Ivee. Already on an antibiotic for her chronic sinusitis, stomach pains had been in the picture as well and just getting worse. However, no fever was in sight. I just couldn't figure it out. She was having soft and normal stool, and was complaining about her upper hip. I went through everything. Gas, GH issues, scar tissue maybe, even considered shunt issues. Everything in her life has always been so rare or difficult. Ends up...after an x-ray on Monday, we found that she has alot of air and she has a lot of poop in there. Sorry for the mind picture, but it is what it is. She's been on an antibiotic for 10 days, which usually cause diarrhea, so once again, my child is the odd one out. She has taken the treatment well, calling it a shot in her booty. Interestingly enough, she does get shots every night...guess she just thought this was a different kind of shot. We have been doing the Mucinex and liquid suppositories 3x every 12 hours. She's still not moving any stool, but she has really released alot of gas. 

Yea, so not the post you were hoping to read...:) But...we all do it...and she needs too! So, now I ask you to pray for poop. 

Never thought I'd ask for that! 

Finally. Please say a huge prayer for our friends Aaron Bell, Kristie and Chris. Aaron got some bad news Monday. He will be beginning hospice care...I am heartbroken for this family. We have never meet, missing each other by minutes or hours many times at St. Jude, but I love and care for them the same. Aaron is 16, and the thought of really knowing all facts just makes my heart burdened for him and his parents. 
Aaron's website is in my links list. If you would like to leave a note of prayer or encouragement, please do so!! 

Time....

     I honestly wish I could take the time to update my blog everyday, but quite honestly, I don't have it to spare! I did want to touch base with our followers/subscribers. Ivee began growth hormone therapy about 8 weeks ago. She has finally gained some weight, as my back can tell me without the use of a scale. She does have some complaints, and I am not sure they are GH related. It seems to me, and her pediatrician, that they possible are, but she has had a sinus infection and drainage, so we are going to wait for the symptoms and side effects of the antibiotic to pass before really seeing what the issues maybe. It does seem that she is learning what growing pains are. I am sure some of the complaints she has with her legs and joints are related to growing pains, something she has truly never felt before. As hard of a decision it was to start her on growth hormone therapy, I am looking forward to seeing my baby girl grow. I just pray over her every night that God will protect her body from any potential harm that the hormone therapy could impose.
     Ivee's left eye is patched everyday from 4 to 6 hours. We have been patching her for years, trying to increase the strength in her right eye (damaged from the initial tumor removal in 2006). For a while, she was gaining ground and sight, but lately, the right eye is veering off more and more. If it continues, we will be looking at a possible surgery on that eye. This is something else we pray over every night. Actually, a typical prayer night for Ivee goes something like this...

       "Dear Jesus. Help me to walk, help to eat, keep my healthy and heal my body. Help my eye, help me grow, help my tummy. I pray for Lucy, Levi, Chasity, Carlin, Eli, Haley, Whitney, Sonia, Pastor Bobby, Cathy...(and the list goes on). Now I lay me down to sleep, I pray the Lord my soul to keep. May angels watch me through the night, and wake me with the morning light. Amen" 
     
     She's never lets us forget to pray. A typical nights routine is: Brush Ivee's teeth (for 1 minute. We have a timer!) Go potty. Hook her up to the feeding extension line and give her the night time meds. Hook her up to her feeding machine (which feeds her all night long). Prep and give her the growth hormone shot. Pray. Mommy AND daddy must hug and kiss her good night. And lastly, don't forget to play the music!
     We will return to St. Jude for her MRI and other appointments at the end of February. I was just telling Emmett the other night, I can always tell when it's getting close. I feel this need, or urge to pack and travel. I guess it is similar to someone who travels for their job once a quarter. You just feel it coming. Of course, you can feel the anxiety trying to creep in as well. It's the little things that set it off. For example, Ivee had a bout of diarrhea this past weekend. Saturday night she was complaining about her neck (where the shunt line is located). I saw nothing and after a little crying spell she was fine. But there was the time, back in 2010 when she had a rare shunt line infection after a stomach virus. The conclusion had been that the virus traveled outside the intestines and traveled along the line to her neck where an infection started in. I am SO very thankful that she is here with us, but please...NEVER think cause the cancer is gone that the worrying or living with the consequences of the cancer is easy. Nothing about it is easy. I just feel incredibly blessed! It could be so much worse than it is. She is a happy little girl, who just lives a not so typical little girl life. Honestly, she doesn't know any different, and sometimes, that makes me sad for her.
     Okay, I'm pulling myself away from the pity party! Keep praying my friends! I am so thankful for you. And if you would, please add the following to your prayers as well.

Our friends, Sheila and Jesse. Their husband/dad, Danny, passed away Christmas Eve. It is still a very hard road, and Jesse has health/disabilities (much like Ivee). Danny was a huge help, and now it is just Sheila. And they miss him terribly!
Our pastor, Bobby. He is going through chemo and needs the prayers of God's people for healing!
Carlin, still going strong, but has hard days.
Aaron, going through chemo for new tumor growth. Surgery not an option and radiation has been maxed out.
John, just had surgery to remove a returned brain tumor.
Emmett, yes, Ivee's daddy is having problems with his arm. Pain from elbow to hand. Seeing the doctor Friday.

Here's a tale you'll want to hear....

Six years ago, in a home so unsuspecting, the lives of five family members would be changed... forever. December 15th, the Foley babies, after their Christmas Concert from church, posed patiently as their mother held her camera. Daddy, Emmett, was in Texas and mom, Hope, thought she would surprise him with some pictures of his babies in front of their tree. He had been gone for about a week and would be gone for a little longer, to be home just in time for Christmas. Ivee, the youngest of the children, only 7 months old, had not been acting so happy lately, crying often but wanting to be her happy, cheerful self. On this night, she was patient, but quickly decided she wanted nothing to do with being happy in the pictures for daddy. As the night progressed into the next day, Brittney, the oldest child, became sick. She continued to deal with vomiting and nausea all through that Sunday, December 17th, which happened to be Ethan's 7th birthday. Mom was very tired, but decided that she would take Brittney to the doctor Monday while sending Ethan off to school. 

Hope loaded her daughters into the van that Monday afternoon, and set off to the doctors office, hoping that Brittney could find relief from her stomach pains and sickness. Being that it was only 7 days until Christmas day, the mother decided to stop at a store just down the street from the doctors office to pick up a couple of items. Leaving Brittney to rest in the van for a few minutes, Hope took Ivee stilled strapped into her infant seat inside the store, placing Ivee on the grocery cart securely, as so many parents do. Finding the few stocking stuffers that she needed, Hope left the store. As she exited the doors, she reached to throw something in the garbage can at the end of the cart. As the she turned around to look at her baby, she saw the moment that the car-seat hit the concrete ground with a loud bang, face down....the way the car-seat fell made no logical sense. Hope, completely overcome with grief and fear, pulled the car-seat over to see that Ivee was awake but dazed and a large knot on her forehead. She rushed her children to the doctors office down the street, the same place she was taking Brittney for relief that day. The doctor there said Ivee was responsive, but since she was wanting to sleep, she might possibly have a concussion, a CT scan would confirm this. So, from there, Hope rushed Ivee to the local hospital 30 minutes away, the entire time Brittney telling her mother that it was going to be okay. 

With Hope's husband being hours away, Hope called a friend, who immediately began finding people to come to her rescue to get Brittney and be by her side, and then she called her husband. Emmett, after weighing what had happened, told his boss that he needed to leave Texas and come home immediately...his family, his daughter, his wife needed him. 

As Hope stood by Ivee's side, the nurse positioned her body and her head on the CT table, no need to strap her down, for Ivee was sleeping away. Hope, continually praying that the fall, which was now permanently etched, no scarred onto her brain, would not have hurt her baby...that it was just a concussion. The nurse exited the room to prepare the machine for the scan. As Hope stood there looking at Ivee's little body a peace and calm came over her. Reaching down to take Ivee's hand, Hope heard a still, small voice speak straight to her heart..."It is okay. I am with you. Ivee will not be harmed from this fall...but there is something that I need for the doctors to see." It was then and there, Hope knew. The weeks of crying with no relief, the head tilting, the fact that her daughter didn't seem to be like her other kids at the same age...something was wrong with her little girl. The nurse asked her to step inside the room with her while the scan took place. Hope stood there looking through the window as the CT machine came to life, and then looking down at the computer screen, Hope saw what her heart already knew...a large white spot where gray should be appeared as the scan went from the top of Ivee's head to her neck and spine.

Picking up her baby and leaving the room, Hope held Ivee close, knowing that life had just changed, but not knowing just what that would mean. The doctors told her that an MRI would be needed in hopes of getting a clear answer, but all she could think is, “How am I going to tell Emmett? What do I say? What does all this mean?” Even after the MRI, sitting in the emergency room surrounded by friends, Hope still felt distant, stunned and alone, desperately wishing that her husband could teleport straight into the room from Texas, but knowing she would have to wait for him to drive the long hours home. 

The hard separation started when Hope had to let her baby go with the pediatric nurses in the ambulance for a transfer to the local children’s hospital, where she would be admitted to the PICU. Hope's friends drove her the 40 minutes from one hospital to the other, the entire time, Hope's heart hurting and searching, and only finding some relief when she was joined again with her baby in her new room in the ICU unit of the children's hospital. 

After a long day of visitors in and out, Emmett stepped out of the elevator late that night into the 5th floor waiting area. After their long embrace, Hope lead Emmett to their daughter's small hospital room, to their beautiful baby girl hooked up to monitors and machines, the only signs of a fall being a nice bruise over her right eyebrow. She was very happy to see her father, and he her, but now looking into her little chubby face brought different feelings than joy. It brought with it a fear and despair. The doctors were still unsure what the spot on Ivee's MRI meant. It didn't show signs of any one particular diagnosis. The neurosurgeon wouldn't know what he was dealing with until he got inside that beautiful little head. Emmett, Hope and family enjoyed her company that Tuesday and said their prayers over her. Wednesday, December 20th, lead the family to the halls of the surgery ward on the bottom floor. The doctor reassured them that he would take care with there child. They kissed their baby good-bye and sat in the waiting room. This waiting room, shared by the surgery department and the maternity ward, was full of people, all with very different emotions. Many were there waiting on the joyous news of babies being born. Celebrating the great day when a new life would come into the world. Emmett, Hope and family sat there praying for news of something simple, that the doctor would come in saying all was well, she did fine and she would be the same child they knew before. Five hours later, as the doctor took the parents into a room to themselves, they saw it on the doctors face. Holding hands their hearts broke when they heard the words...cancer. 

That was it. That moment. The moment that car-seat hit the ground outside a store in Robertsdale, AL on Monday, December 18th...that was the moment. The moment that their lives, their ideas of how precious life truly was changed forever.  It only takes a moment for your world to come tumbling down, spiraling to a place where no matter what you do, you have no control over this. However, it is also the moment that life and faith and family took on new meaning. The moment became their...day, our day of learning to trust and pray and plead and grow and learn. 

It became G.I.F.T day! 

The day that we, the Foleys learned that God is the healer, sustainer, prince of peace, savior, delieverer. 

He is in control and he is the faithful one when our faith is wavering. Not that we didn't know he was all these things before, for I had been taught this in church my entire life...

...but now we believed it! Now we had to live it! Now we counted on it! 

                               God

                               Is

                              Faithful and

                             True! 

He is a Gift. He came as a Gift. He died as a Gift! And he rose as a Gift!

Happy G.I.F.T day to you all and may Jesus be the Gift that you all come to know and receive! 

____________________________________

Ivee after her first surgery 12/20/2006

A month after surgery, just beginning chemo. 

Daddy and Ivee in the hospital during chemo treatments 3/2007

Ivee's 1st birthday in the hospital 5/8/2007

Ivee at St. Jude with her daddy while he visited us there while she underwent radiation to the brain 7/2007

Living at home again and her hair growing in. Loving her sister! 9/2006

Ivee and Brittney's hair growing back. Brittney lost her hair during Ivee's treatments as well. Cancer affects the whole family! 

Ivee on her first anniversary of G.I.F.T. day 2007!!!!

Ivee in 2008! Man, at the hair! Loving Grandpa, watching baseball, and visiting the Memphis Zoo. 

Ivee has her 9th surgery. This time to remove a cyst and scar tissue that formed in her brain. 09/11/2008

After being released from Memphis from scar tissue surgery, Ivee develops Meningitis, and has to have two more surgeries to have a shunt placed in her head. 09/21/2008-10/2/2008

Ivee goes ALL of 2009 without on single surgery or issue needing hospitalization! 

Ivee has a rare shunt line infection and has to have her shunt replaced. So use to hospitals, she and I always found ways to entertain ourselves and others. 2/2010

And we find out Ivee is very allergic to one of her antibiotics...after mommy has to get ugly with the doctors! 

We find out that Ivee has hip displasia...totally NOT related to the cancer and brain surgeries. She undergoes hip surgery, her 14th surgery over all, and stays in a full body cast for 6 weeks. 9/23/2010

MRI reveals Ivee's cancer has returned 01/24/2011

Ivee undergoes her 15th surgery to remove cancer from her brain again 02/18/2011

A week after brain surgery.