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!!