And the results are....

CLEAR. No signs of recurrent disease. Watching her bloodwork and hormone/thyroid levels. Some concern over results, but will check again in three months. Thanks for the prayers, once again and always.

MRI day

Ivee is in MRI right now. Allison had her scan yesterday. Lucy Friday. Both had clean scans. Allison is waiting on a LP to see how her fluid looks. Thanks for our prayers. Justin is still here with his family, but each day gets a little harder.

One More

I don't know how I missed her, but Allison has scans next week as well. So add Allison to your list! God Bless!

Scanxiety and so much more...

     Sometimes I wish I could just think my thoughts and have them appear on here for you all the read. (Then there are many times I am grateful they don't!) I only say this being that it just takes time and determination to sit down here and type these things out. I always have something I need to be doing, but I just have to make myself sit down and type once in a while. And although I need to be cleaning up the kitchen, especially after the mess I just made making laundry detergent, I just realize that sometimes other things are just more important. What could that be? Prayer! Yep, prayer.
     I have some many children and families on my heart right now. I would say that not a minute goes by where one of them doesn't just pop into my head. So, I am going to give you some request for prayer that I have, and then end with an update on Ivee.
    1. Justin Tollett. Justin and his parents lived with us at the RMH from February to May of 2011. He was diagnosed with Medullablastoma in Feb. Underwent radiation and four months of Chemo. Right after Christmas, he had an emergency CT scan that showed two new aggressive tumors bleeding in the front of his brain. They are operable, but only to extend his life for a few days/weeks. He is in the end days of his little 5 year old life. Not a day goes by that I don't send Ivee off to K5 and think about how much his momma would love to be sending him off to school for the day. Please, pray for a miracle in Justin's life here on this earth. We know, whatever God's choice, he will have healing soon! Pray for his momma Kristie and daddy Jerry. Today is Jerry's birthday. Pray for a great day with his boy!
    2. Brandon. He also lived with us in Memphis during that time. He has an inoperable and aggressive tumor on his brain stem called a DIPG. He is still fighting for his life. The tumor is still progressing and they are fighting it still with a 2nd round of radiation. Pray for healing and answers and cure!
    3. Starla. She was diagnosed right before Christmas with a rare leukemia. After 3 rounds of chemo, she went into cardiac arrest. The doctors have done all they can. Now it is up to God to heal her little body.
    4. Harrison. A friend of mines cousin. They have discovered that he has a very rare leukemia, perhaps never even seen before. Looking for the right treatment for him.
    5. Lucy. Lucy was in the hospital having tumors removed the same week as Ivee's resection back in February. Her family went through radiation the same time as we did. Lucy is recovering, but her little body is very fragile and she is having difficulty gaining weight and learning to eat again. She had a feeding tube placed last week. The feeds are hurting, and she needs to adapt to this new way of getting nutrition. We have walked this road with Ivee. G buttons and I have a love hate relationship. They keep my Ivee alive, but they are a source of inconvenience, infection, concern, and an inhibitor to want he to eat by mouth. Pray Lucy heals, gets better and stronger and eats again by mouth so she can get that thing out! Lucy also has her MRI this Friday. Please pray for NED! We need clean scans!
    6. Dillan goes for his MRI today. Praying that God has completely healed him of his cancer.
    7. Jaryn. Praying for a good report on his MRI.
    8. Levi: He has an MRI next week. Praying for great results!
    9. Isaiah. Praying for continued healing and that his family will be able to maintain his sodium, output and the endocrinologist will continue to help him with growth hormones and what he may and may not need.
****You can visit most of these kids sites on this website. Their links are in the left pane.
   
    Okay, now Ivee. She is still doing very well. Every once in a while her eye is off, or she gags, or she's tired and I start to get that little feeling. So, I watch her closely for any signs of anything "off" but she just keeps on trucking on...She is amazing.
    She is still taking very little by mouth, but she eats a little of something everyday now! It isn't much, but to me it is just amazing. Even at this pace, she wouldn't be able to sustain life by eating until she is 15 or 20, but she is trying! Not only that but she ASKS for food now. She tells me she's hungry. I am so thankful for the gastro doctor in Memphis. Who knew putting her on this 1/4 of a little tiny pill would make her gagging pretty much disappear and cause her to have a little appetite.
    She is learning to read. She sounds out her words VERY well. I am so proud of her love for education. She necessarily want to go to school everyday, cause she wants to stay home with mommy, but she doesn't fight me. She goes willingly, and loves it while she's there. She walks all over the place with her walker, well, everywhere but at home. If the market were better, we would sell the house to get one with all even floors. When we bought our house (which I do love) with it sunken living room, we weren't anticipating having a special needs child with a walker.
    She goes to hippotherapy every Thursday and does PT and rides horses. It is really helping her stability. She doesn't like everything about it, but I think she likes "her" horse....Buttercup!
    Our next visit to Memphis is next week, and DADDY is going with us. She is so excited that Daddy gets to go with her to see Dr. Merchant! She said so! We decided to leave a few days early to give Em and short vacation and to visit with some of our cancer families that we love while we are up there. Ivee will begin visits with St. Jude departments on Tuesday. Wednesday is her MRI scan day and follow up visit with Merchant. We should know the report by that afternoon. Praying, praying, praying for NERD! This marks the 1 year anniversary of her reoccurance, and 5 year anniversary of initial diagnosis scans! I try not to stress over it. I internalize my stress, so I have been very busy cleaning, making soap, washing dogs and the like. My body compensates by telling me to stay busy. So, I obey it! I am not a worrisome person, but you cannot control stress. You can only control your actions. I try to take my thoughts captive and give them over to the Lord, and then I try not to snatch them back, but keep them there.
    Thank you all, once again for the love and support you give to us. I know I don't hear from any of you, but I know someone is visiting this page. (I can see it in my site meter). So to those who do visit, thank you for the prayers and thoughts. Cissie and Grandma Betty, thank you for the notes of encouragement you leave me! Teresa and Phil, thanks for the words and your friendship!

Request

My friends, I once again ask for prayer. I have friends from St. Jude. Their baby, Justin, whose the same age as Ivee had some very unexpected and bad news yesterday. Justin has two large tumors that are bleeding into themselves. The diagnosis is grim, and surgery would only give him a few days. They are driving home today with hospice care. This breaks my heart, for they are family. We lived with them for seven weeks, going through radiation together, playing on the playground, worshiping together and Bible study, and eating many meals at night for 2 months. My heart is breaking for his mom and daddy, Christy and Jerry. Please, pray for something miraculous to happen!

G.I.F.T. Week!!!

This is the picture from the 1 years anniversary of Ivee's Diagnosis

      I've been a very busy "elf" lately, helping Santa with secretive Christmas presents. I've made a few comments on Facebook, but I really wanted to take the time to express myself on my blog.
      December 18th and 20th live in infamy in our household. These will be two dates that we, the entire Foley family, will never forget. Life may continue to go on around us, but on these days, I reflect quite a bit over our journey.
       It is almost surreal that this past Sunday marked the 5 year anniversary of Ivee's fall at 7 months old from that grocery cart! FIVE years! Five years we were told in the beginning we would probably never have!  
      Let me begin by telling you a little about myself...I have a gift and/or curse I suppose. I can see something happen, look at a picture, watch a video, and the imagery alone will stick with me forever! You can tell me a story, and my imagination is SO vivid that my mind will automatically make a movie out of it that won't leave. This is why my husband has to be careful telling me stories or events that may bother me. Just ask him about the subject that will not be discussed ("We don't talk about that") and he'll tell you. (*Let me clarify, I am in no way a savant who remembers all things. I usually just remember things that are significant, or important to me or others. My creative mind will just take things and run crazy with them. I just have a gift for remembering things or recreating them in my mind.) So, what does this lead to?
      I can still replay the events of that day clearly in my head. I've only had a hand full of tragic or painful moments in my life, and though I recall them, they are a bit hazy. But, I feel like a digital recorder when it comes to the first days of our story with Ivee's battle. It still amazes me at how all this came to be. The horrors of seeing her hit the concrete, the imaging that I thought would forever haunt me, has become one of my most enduring moments with my Creator. Of course, at first, there was nothing grand or magnificent about it. It took me about 2 years to come to the point that when my "mind" replayed it I didn't feel that punch in the gut you get. (I get the same pain when I see people on Funniest Home Videos hit concrete. Maybe there is a connection there? Ya Think?) It was very difficult for me to get over seeing that fall. But, as the years have passed, doctors have given inputs, statistics, comments, opinions...and what Em and I discovered long ago, is that the fall SAVED her life! Logically speaking, the "way" her carseat fell of the cart, direction and all, it is unscientific. It makes no logical sense. You know why it makes no sense? Cause Ivee didn't fall from the cart. I believe with all my heart, God took my baby, by angel or however you would like to think it, and put her on that concrete! He made this happen.
      Now many of you may think, why in the world would God do such a thing? Well, I can only tell you that I had been concerned about Ivee's "spitting up", inconsolable crying, breathing issues, and not sitting up (balance) for a few weeks. The pediatrician knocked it off as a problem with regular formula, gas, and delay in development, and gave her a nebulizer for breathing in case she had asthma. What she had a was tumor killing her. My God knew this. He knew, in the words of our first neurosurgeon, that if we waited for the doctors to find out what was wrong, it would have been too late. So, God knocked my baby from that cart, and HE saved her life. He spoke to me, verbally in my heart, next to that CT scanner, telling me she was just fine from that fall...that he has something else to reveal to us. Yes, I heard him, and when I saw that CT scan, seeing something that my untrained eye knew shouldn't be there, he confirmed his words to me.
     Yesterday, December 20th, marked the 5 years anniversary of the day that Dr. Martino performed a 5+ hour operation to remove 98% of Ivee's first brain tumor. Dr. Martino is in the top of his field in pediatric brain/spinal surgeries. (We of course made sure of this before we let anyone touch our daughter) Even though he isn't her neurosurgeon any longer (this is because of our move to St. Jude), let me just say, if I, me personally, had to have surgery on my back or brain, he would be the FIRST person I call!
Okay, I don't want the post to take all day, so I will get to a closing point.
Many of you know why we call this G.I.F.T. week. It makes sense, being that it's Christmas time, a time for giving and receiving. BUT, I didn't call the day of remembrance that for just the fun of the season. No! Not at all. G.I.F.T., of course an acrostic, but it holds so many meanings for us.
     That fall was the moment my Creator told me he had a plan for Ivee's life, for my life. It is the reason that I can now look back and say that it is an enduring moment with my Creator. He wasn't punishing me. He wasn't trying to hurt me. He was giving me a G.I.F.T. He gave me the gift of my daughter's life. He gave me the gift of moments so intimate with him, that nothing else could have gotten me through. He gave me the gift of knowing what is important in life, and not taking any thing or any MOMENT for granted. Life is a G.I.F.T. meant to be given and to be received. He gave me the G.I.F.T of a closer relationship with him, a relationship I don't think I could have ever had apart from pediatric cancer.
     He gave us a G.I.F.T. in using Dr. Martino, Dr. Merchant, Dr. Boop, St. Jude, USA, Le Bonheur, and so many others to be tools/vessels to save Ivee's life.
     God gave us a G.I.F.T. when he allowed Dr. Martino to leave Ivee's nerves in tack, to give her a fighting chance of them recovering. And, though not all of her brain/nerves were able to recover (we all know her deficits), I can only be thankful for the things that he did, cause she could have been SO much worse.
G.I.F.T. is not about me. It is all about my Lord, my Savior, and Ivee's Healer.
                     God
                        Is
                          Faithful and
                           True
     So, as this Sunday, December 25th approaches, I think of our first Christmas with Ivee. It wasn't around a beautiful tree in our living room, surrounded by boxes and toys. We woke up in the RMH, with our other two children. Without Ivee there. We left her in the hospital in the care of the doctors and the watchful eye of my father, whom I am so grateful for on this journey, while we went for just an hour to Em's sisters home to just take a break. We returned to the hospital to find out that Ivee would be moved from ICU to the floor. We wouldn't leave USA hospital for another 22 days.
     I could dwell on that day, but instead, I am thankful for the first Christmas since. With Ivee right there with us, seeing her first Christmas tree, opening her first gifts, taking our first family Christmas pictures with our 19 month old. I am thankful for the 3 Christmases and 4 birthdays that followed. I am thankful for the 5 year old in my bedroom right now watching Sesame Street. I am thankful for the 12 year old, still asleep at 9:36 in the morning, and for the 15 year old who will be leaving my house in 2 1/2 years for college!
     G.I.F.T. Do you know what it means? I pray that this Christmas, if you don't know Him...if you haven't had the chance to heal...if you feel the burden of your life around you...if you feel a void in your life...that you would give God the chance to become your Father. He is such a loving Maker, even when we don't understand.
      I am so grateful for the Love and GIFT of all of you! I want to leave you with a powerful song. May you have a very Blessed and Maker filled Christmas! God bless!

What were you doing this day 5 years ago?

Not many people can actually remember what they were doing on a date 5 years ago unless it holds major significance, like a wedding or the birth of a child. Well, I can't say exactly what I was doing this day, but I do know what it probably could have been. More than likely I was running lines, practicing music and solos, and decorating a stage for our production The Gift.

I have been blessed to work with my friend Tony off and on for 11+ years. In 2005, we had read a story by a well known author and believed it would make an amazing story for a Christmas Musical for our church. We performed the story twice. The first time in December 2005, when I was pregnant with Ivee, and then decided to do it again in December 2006. The story line was just too great to not share with those who had missed it before. In The Gift, you meet a family; The parents, played by myself and my husband, Emmett, and their two children. The oldest child, Gideon (played by our oldest daughter, Brittney, who as 9 and 10 at the times), has been battling leukemia...cancer. At the start of the play, Gideon is doing well, no signs of disease. Her family is by no means wealthy and work very hard, but their baby girl with a heart bigger than the mountains wants to take this Christmas, the first time she has felt well in years, and wants to serve at the homeless shelter. It is there what Gideon meets Earl. Earl is homeless, mean and grumpy. He doesn't react well to this little, sweet girl...who reminds him so much of his little Molly, whom he lost in a car accident many years ago. Gideon, however finds a way to reach Earl's heart, through her love and compassion and God's planning and timing. And even when Gideon relapses, worse than before, we see God work in her life and Earl's life to make a true Christmas Miracle come true. 

Well, we ended the weekend with 2 performances of The Gift, this time with all the people in our family making appearances. Ivee even made a cameo. As things were finally winding down, we were home preparing for our first Christmas with Ivee in our lives, and for Ethan's birthday, which unfortunately falls one week before Christmas. In just that two week period of time, we didn't know that the play, the one that had touched so many other's lives, would soon become our reality. We went from "acting" as parents of a child with cancer, to "LIVING" the life of a family stricken by cancer. So the Phrase "Art really does imitate life!" became so very true for us. 

There are SO many details in this story of our beginning journey, and I just might one day write a book, cause it would be that lengthy. BUT, I can say without a doubt that God has always been in control. From the moment he pushed her from that grocery cart, he has had a plan. I have always trusted in him, even when I don't understand, even when I was hurting, even when I was so ANGRY at Him! Still, I will continue to trust him. Many may just wonder, how do you really know? God so many times doesn't reveal his presence. Yes, I know that is true, but YES he really does sometimes, many times, in our greatest times of need show he is there, that he cares and he has a plan. Let me just share an important time in our lives with you. 

I recall the second day we were in the hospital, it was the night before her surgery, a stranger introduced herself as the pastor of a local church. We were sitting next to the elevators and she said, "I don't know you, I don't know what you're going through, but God told me to talk to you. To let you know that He knows You need a Miracle. You just Hold On, Help is on the Way. We are all One in the Spirit, and I am praying for you!"

Now, what you don't know, what isn't evident in this conversation to anyone who wasn't a part of that play we had done just two weeks earlier, is that this lady, this stranger came to us in our time of need. And in just her few short lines or sentences, she quoted the titles of THREE of the songs from that play! Yes, she did! Do you Need a Miracle, Hold on, Help is on the Way, and We Are One (in the Spirit). No, I don't believe that she was angel, for she did tell us where she was a pastor, but I believe that when believers are obedient, God makes them a tool! She was a vessel for him that day, in a great time of need! 

I just needed to share this with you all. I do struggle today. So many friends of mine are hurting. My friends Millie and Joe are still fighting for their son Brandon's life as he fights DIPG as my friends Jay and Mary mourn the loss of their baby Myra who lost her battle to DIPG yesterday. Aaron is fighting against Ependymoma, and I try to keep a positive outlook, knowing that right now I am so blessed. 

As we are in the holiday season, find a moment to be thankful for your blessings! Look around you and see where God is at work and join him there! Be a blessing this season and know that I am thankful for you all! 

I will leave you with a song that has blessed my heart for the last 4 years. Today it reminds me of Jay and Mary and the great faith they have in their Lord today, even in the midst of their lose! God Bless.

Fighting for life at Christmas Time

Prayer friends. Another of our Ependykids is going down fast. Please say a prayer for 6 year old Aaron Gray and family. (His website is in the links column) He has been fighting for 5 years and has had so many reoccurances. The latest MRI showed significant life threatening growth and he has no treatment options left. What a horrible time of the year to watch you baby's life decline!

Also, Please pray for my friend Carrie Reece and her family. Carrie is fighting something, and the doctors just aren't sure what is going on with her. It is really making her health decline quickly. Need answers!

Ivee's next MRI is January 18th. All I want for Christmas is the continued prayer of you, my friends, followed by the continued Healing of my Lord, our Healer, Jesus Christ! Share the news of his birth and love this season. I know his grace personally, and if you would like to know it as well, I would love to share!

God Bless and Merry Christmas to All of You!