The Foley Family - Trusting in God at ALL Times!!!

St. Jude Gives Back Big Game Day

2012-02-08T09:53:00.000-06:00

Sunday our family had a wonderful opportunity to participate in the St. Jude Gives Back Big Game Day in Mobile, AL. This was the launch of a new program in our area, and it was a great success. I wish friends and family could have been involved and enjoyed time with us there. Here are some highlights.

Ivee had the opportunity to share a favorite cake design with the students of Virginia College's Culinary department. They designed and made a cake based on her interest. Ivee's instructions were - chocolate, pink, ballerina like the Nutcracker Ballet.

She took every opportunity that she could to pose with her cake or for the camera!!!

The chefs and students probably would've kept her if we let them!

The Clubhouse at Hank Aaron stadium was donated to the event! Catering was donated by Naman's. Cakes were donated by the college. Many companies and artist donated items or events for a silent auction.

Ivee was proud to stand at the front of the stage as her cake was auctioned off! I wonder who bought it....hmmmm...

She was getting excited when auction time was coming!

Britt and Ethan enjoyed the night. Not one single picture of Ethan, but he was off playing with new friends made that night! Never meets a stranger.

And the results are....

2012-01-18T15:36:00.002-06:00

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

2012-01-18T09:29:00.000-06:00

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

2012-01-13T12:08:00.001-06:00

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...

2012-01-11T09:35:00.000-06:00

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

2011-12-30T15:19:00.000-06:00

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!!!

2011-12-21T09:43:00.007-06:00

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?

2011-12-06T10:02:00.002-06:00

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

2011-12-02T13:09:00.000-06:00

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!

Give Thanks Walk

2011-11-18T10:39:00.000-06:00

Tomorrow we will participate in the Give Thanks, Walk for ST. JUDE! We have been asking for donation for TEAM IVEE for some time now. If you are looking to give to some charity of some kind before the end of the year, believe me, THIS is a worthy cause. I will always choose to give back to the place that saved my daughters life!

Click to GIVE

November Thankfulness...

2011-11-09T08:44:00.000-06:00

I have been writing what I am thankful for on FB for the month of November. I wanted to share my "thanks" on here with those who aren't on Facebook.
November 3

Today, I am thankful for a Savior who not only saves a soul, but often delivers us physically!

November 4
Today I am thankful for an incredible partner and best friend of 17+ years. Each year he has grown to be a more loving and thoughtful husband and father. He works very hard, long hours every week, and misses out on so much because of his commitments to his family, but tries to find a way to make the kids know that he is there for them, and that he wants them to live Godly, moral and thought-filled lives. Emmett, you are my Lobster!! Forever!

Monday, November 7
Today I am thankful for my kids. Beginning with child #1. Brittney is our ray of hyperactive sunshine! Fifteen years she has brought us joy and made us laugh. She is very responsible with most things we give her and had to grow up too quickly to help us with Ivee's battle with Cancer. She is a talented artist and singer, and in so many ways reminds me of myself. She has a heart for Jesus and a love of family! Brittney, you are growing into a beautiful lady and mom and dad are so very proud of you!!!!

Tuesday, November 8th
Today I am thankful for My Ethan...oh, Ethan..what to say. Even though he is at "that age" he is still thoughtful of others in need around him. He is artiatic and talented. He cares for his baby sister. And one day, when his hormones are in check and stabilized, I pray he be a strong man of Godly character!

And Today's PostToday I am very thankful for my baby, Ivee. I could write an entire book of what she has taught me and shown me in just her short 5 years, and maybe one day I will. She is so smart, funny, sweet, precious, adorable, stubborn and my biggest HERO! She is the strongest person I know. She is a survivor, overcomer, and fighter. She never fails to tell me everyday that she loves me! I love when she wants to "hold momma" (which is momma holding her). I have imagined life without her too many times, for she has captured a part of me that will always be hers. Thank you God for allowing me to keep and love her here on this earth, forever how long!!!

My GIVE THANKS. WALK for St. Jude Children's Research Hospital is just 10 days away. If you are looking for something to give too here at the end of 2011, I will gladly help you with your tax deduction. :) Here is the link to my Pledge Page.

We go back to St. Jude in January for Ivee's next MRI. We, as always, covet your prayers. As you pray for Ivee, please remember to pray for our other friends. Lucy's counts are recovering as she is returning home. Hopefully they will pull her central line very soon. Justin is home for good until check ups. Levi, Chasity, and many others have had great reports. Brandon is still fighting his monster of DIPG. We love our extended cancer families.

Ivee Update

2011-10-24T11:29:00.000-05:00

I know I have been a slacker about updating the website, so I wanted to share some highlights...

First, when we went up in Sept. for Ivee's check up we were able to make her permanent plaque for the RMH of Memphis, where we have lived a few times in the last 4+ years. Ivee's first handprint from 2007 was painted over in the remodel, so they put the kids handprints and info on moveable plaques. Here she is posing with her Butterfly Plaque!

This is my suv of "Childhood Cancer Awareness" at the hospital that makes Hope's come alive!!!

Here is Ivee with KK and Lilly. KK, the one standing, is a fellow Ependymoma Survivor/Fighter! We love meeting our fellow fighters. It makes you feel "not so alone" to meet others on your same journey!! Go KK!!!

This is Ivee with Allison. Allison lived with us at RMH this year. She just finished her Radiation and Chemo treatments and is back home. We love you Allison and Tabitha. Keep up the fight!!!

Back home, homecoming week was a few weeks ago. This is Brittney on Cartoon day. Alice in Wonderland.

Homecoming NIGHT, we had a SMORES at our outback fire pit. Ivee loves to roast marshmellows for mommy to eat!!!

And here are my other "dorks" roasting hot dogs.

Couldn't pass up posting Ivee's Scary faces!

Here is Brittney after the roasting and ready for the dance! So grown up!

Just love this of Ivee. Such a funny girl!!!

Two weekends ago, our closest friends kids were over. This is Ethan with his "brother from another mother", Noah! They have been friends since birth!!

Niece Whitney and my Ella! They are so growing up!!

Nephew Nathan came to play with me! Love you Nathan, and he is enamored with his Aunt Hope!!!

Cousin Haley and Ivee had a reluctant Princess Photo Shoot!!!

Oct. 16, Fundraiser Polo at the Point, benefiting Ivee's home health agency, Mercy Medical! Britt, Ivee and Mica tagged along for free food and Polo!

Friday, Oct. 21 was my Mom's 60th birthday. We had so much fun eating together at Tacky Jacks.

Finally, a local church the kids attend on Wednesday nights has had a haunted-judgement-house. This is Brittney after spending the night in a cage in "hell". A bit creepy.

Yesterday, Oct. 23, we were at our friends house for Grant, their sons, 8th birthday. Ivee had fun kicking a ball around the bot-chi court out back!!!

And today, Ivee was ready for the 50th day of school with her best 50's attire. This skirt was from when Brittney was in K5. So glad I hold on to things that my kids had. You never know when you may need it again!!!

Thanks for your continued prayers for our family and Ivee. We feel so blessed to have you all lifting us up in prayer. Continue to pray for Ivee's appetite. She has been doing really well lately trying something by mouth everyday! She actually ate a whole Popsicle one day along with trying popcorn, cookie, cake and licking an apple. The GI doctor in Memphis was so smart about putting her on a medicine (used for anxiety) but the side effect is a appetite enhancer. It has also alleviated her gagging, except when she sees something that makes her gag, like a mouth with chocolate on it! She is doing so well!!!

VOTING

2011-10-20T07:27:00.001-05:00

Ivee has fallen to 4th place. We really need help with votes to stay in the top 10. God bless and thanks!!!

http://apps.facebook.com/yourlifecontest/content/ivee-blessed

Friends, don't forget to VOTE

2011-10-18T10:49:00.002-05:00

Don't forget to vote everyday. We have someone sneaking up to catch us and take away our position!

http://apps.facebook.com/yourlifecontest/content/ivee-blessed

KEEP VOTING!!! -------------------------------------------------->

2011-10-14T08:27:00.002-05:00

From my friend, Kate

2011-10-13T08:46:00.000-05:00

My friend Kate is coming to end of her treatment journey with her Lucy! YAY! Someone shared this today with her, and I want to share it with you. I will probably add a few things, but this about sums it up. Thanks Kate!!!

11 THINGS I WISH MY CHILD’S DOCTOR KNEW.......  

1. Please don't ask me to leave my child's side if not completely necessary!!! I need to be there for her in all these things!!!

2. I need to be part of my child’s care team. I am there everyday. I am used to being in charge. At home, no nurses or doctors are telling me what to do. Help me be a part of the team.  

3. I am not stupid. I may not understand all the words that you use, but I am willing to learn. Teach me. Help me understand what you are talking about. What could be more important for me know? Let me tell you, after 5 years, I KNOW some THINGS!!!

4. I am not overprotective. I am a parent. I see my child struggling to survive. I was given this child to protect and love. If I am doing something excessive, then kindly, gently tell me that it is not necessary. But do not tell me I am overprotective. Those words are fighting words. 

5. I don't know if you believe in God or not, but I hope and pray that you do. While my child is under the care of your hands, I am in the waiting room asking for God to guide your hands and your mind so that you can save my child’s life. I pray for you!!! And when I can, I'll share my faith with you!!!

6. Caring for a child with a chronic illness isn't what I bargained for when I was planning a family. This is the hardest thing I have ever had to deal with. I am not just my child’s parent. I have many roles and wear many hats. Please understand this problem has touched every facet of my life and is challenging me in ways that you cannot possibly understand or see.

7. I am grieving. Maybe not everyday, but often! This is not what I planned. My home is waiting for my child. Clothes hang in the closet; toys and books are waiting to serve their purpose. Please be kind while I try grasp what all of this means and while I mourn the life my child should have had.   This is the mind of a parent who is in the hospital watching their baby go through chemo, or living hundreds/thousands miles away from their home!

8. I have to trust you. I have handed over the most helpless and important person in my life. I know that you are not God, but I am hoping that through you, God will work a miracle!!!!

9. I have HOPE!! Big old stinking HOPE!!! I don't care about statistics. There aren't two children here at the same time, having the same surgery. There is one, and that is my child. Don't tell me that you don't think that my child won't make it. Tell me, that you'll do everything in you power to help my child survive.   There is nothing like a doctor continually throwing statistics in your face! It offends me!!! My God is greater, and he has a plan! I will be content with what that plan of HIS is...not yours!!!

10. I know you don't have a crystal ball. When I ask you for my child’s prognosis, I am asking you for reassurance. Every parent wants to be a grandparent one day. Don't get irritated when I ask you about the future. Tell me I'm doing a good job today.   Be supportive!

11. If it is God's will to take my child too soon, don't be afraid to let me see you cry. Your tears will help to cleanse my wounded heart. I need to know that you cared.  

----UNKOWN AUTHOR..

Thank you Kate for sharing these unknown authors words!!! They sum it up just fine!!!

Thanks for everyone's prayers, and

Don't forget to vote!!

Don't forget to VOTE!!!

2011-10-11T09:36:00.003-05:00

We are catching up to 2nd place! I didn't think it was possible!!! Keep voting and sharing my friends!!!

Still needs your vote everyday!! Thanks friends!
http://apps.facebook.com/yourlifecontest/content/ivee-blessed

I will put a short cut to this link on the right upper side of my page here!!

Thanks Friends!!

How can you help!

2011-10-07T09:59:00.002-05:00

Whether you can or can't help financially is just okay with me. I know we all have circumstances and issues in life that can keep us from helping, even when we really want to.
BUT I have another way you can help. There is a movement called the Creating Hope Act. We parents are trying desperately to get our senators and representatives support to pass this act. You can help make that happen. We need supporters, those who would speak up and ask for it. You may be wondering what this act is. Here is a little video to give you some details.

Did you know that Ivee has many of the deficits he speaks of in this video? Did you know that she may never be able to grow on her own one day? She may never be able to have children? Did you know that her likely hood of developing another cancer is high because of chemo treatment? Please, go the this link and give you support!!
Now that you are aware of the act, here is how you can help! I'll be attaching a link in just a moment. CureSearch (a fundraising site for childhood cancer) has already done the work for you. You'll just email or send a printed letter to your representative, asking them to support this act. It is easy, you can use the pre-written note, change it or write your own. You have my permission to use Ivee's story if you like! Here is the Link to that page... Curesearch/Creathing Hope Campaign.
Please, think about offering your support. Also, as I posted in a previous post. I am walking the Give Thanks. Walk for St. Jude. I could use your financial support to reach my goal. Just visit my walk site at this link...
Give Thanks. Walk. Team Ivee.
I am always amazed by the support for friends and family!! God bless you all!! And keep praying!!!

GIVE THANKS WALK AND VOTE

2011-10-05T11:49:00.000-05:00

Hello Friends and Family. This November 19th I am walking to raise money for St. Jude through the Give Thanks. Walk. I could really use your financial or physical support to reach my goal of $1,000. I'm only $900 from my goal right now thanks to some of you!! You can visit my donation page Team Ivee and give a financial donation, OR you can join my team to raise support and walk with us that day in Spanish Fort. The info in on the website page.

ALSO

If you would, I could use your votes for Ivee's Reader's Digest Article. I would love for her to come in first to know for sure that her story and the awareness of Childhood cancer would be told. We have Sooooo far to go!!! Here is the link to vote.... Reader's Digest Your Life Story.

Thank you for always supporting us, especially when just in prayer. I pray that you can help support us financially.

MRI results

2011-09-28T22:22:00.001-05:00

We meet with Dr. Merchant today. He said that Ivee's scan was clear (NERD) and looked well from a stand point of visible disease. However, the swelling on the back of her head and pressure on her brain stem is still a concern for him. He would be discussing the scans with Dr. Boop, neurosurgeon. More than likely, nothing will come from the discussion but a watch, wait and see approach. She is still progressing in a positive direction, learning, growing and achieving more all the time. Is she still behind, yes, but for all that she has been through, she is just simply amazing.
To be honest, I can't believe how much scanxiety I had this time. I told someone recently that sometimes it's just easier going through the treatments than these waiting periods in between scans. When you are getting radiation, you feel like you are giving her a fighting chance, just attacking this monster trying to kill her. You HATE the thought of what you are doing to her body, definitely fear doing something to her a second time that bad enough doing just one time. But, you are fighting. Then, it all ends you just wait. You sit there, moving on with life, this new normal, and you just wait until that next scan. You sit in the doctors office and you wait for them, anxiously, and the moment they walk in you read their faces quickly to see what their face says, not necessarily their words. To be honest, I didn't have these feelings after her first surgery and treatment. So, for 3 years, I was good...if you know what I mean. But, then little Johnny passed away last July, and I was just so sad and Ivee's scan was coming up, I just felt the pressure...but all was well. Then, out of the blue, January gets here and bam, there was the news. The moment the doctor and his nurse walked in the room, I saw it on her face and I just knew. So, how do I deal? I do as I have always done. Pray. Hope. Have faith. The same God who got me through it in 2006 will get me through it to 2012. He hasn't changed, even if I have. What else? Witness. Share. Care. Give back. Make things better for the next family who gets thrown into this whirlwind of chaos and lack of knowledge. encourage where I can and educate when needed. Never push my agenda, but just share my experience. No two children are alike, even if the diagnosis is the same.
It's late, I could say more, but I just like to write my thoughts down, even if it's just for me to go back and read later.
Thank you prayer warriors. Keep on praying! Always believing that my God heals, He saves.
Praises: KK, great report. Adi, clear scan. Ryan, clear scan. Haley, Clear scan. Olivia, clear scan. Justin, Allison, George and Lucy, almost done. Just a few more days/weeks. Aaron, healing. Ronan, doing well during chemo. Dillan, misdiagnosed and healing. Haley, Levi, Brandon and so many others, home and happy. Nothing sad/bad to report this week, and it feels good!

St. Jude Visit

2011-09-26T20:46:00.000-05:00

We are in our room here in Memphis, Check up visits. MRI tomorrow, results on Wednesday. Saw so many online familiar faces tonight IN PERSON. It was so great to see them, even in these not so great circumstances. That's the thing about St. Jude, it's a place of Hope!!! Sometimes, I think the Lord so aptly named me!!! Maiden Name...Hope Long...Yes long I do...Married name Hope Foley...sounds like Hopefully! That I am, so Hopeful!!! He knew, didn't He!!!!
Pray for Ivee's MRI, Katie's and Ryan's. Dillan received great news today! Just amazing, but also a little concerning since he was misdiagnosed!!! He still needs prayers. But, today I am so HopeFul!!! God continue to get Justin, Allison, Lucy, George, Nora and Adi through Chemo! Continue to heal Brandon and Myah! Just so many, but these are on my heart. Thanking God for great and stable reports for Brandon, Olivia, Levi! Lord, please help LANIE and her family to make decisions. So, many!!!
Thank you prayer warriors. I covet your prayers again!!

VOTING

2011-09-19T11:42:00.000-05:00

I discovered you DO NOT have to have a facebook account to vote for Ivee. You can vote EVERYDAY!
She is currently in 5th place! It will take a whole lot of votes everyday to get her to number one. It only take a second, and the reward is getting Childhood Cancer Awareness published!!! God Bless...

Link: To Vote Click Here!!!

Reader's Digest

2011-09-15T08:24:00.001-05:00

I have submitted Ivee's Story to Reader's Digest and would really appreciate your vote for her. You can return and vote daily or every 24 hours (I believe). I have voted more than once, so I know it's possible. Thanks for helping get the story of childhood cancer out there and making people aware. This is just one more way! The only downside, you must have a Facebook account to get to the page, it is being run through Reader's Digest Facebook Page.....

Vote Here: Reader's Digest Story

Update and Awareness

2011-09-14T12:53:00.000-05:00

Soooo NO surgery for Ivee and her stomach issues. The surgeons do not want to touch the stomach hernia. They say she will be fine right now because the g-button has her stomach anchored to her abdominal wall. There isn't a chance of it twisting like it would if it were free to move. They suggested that we could give her a g-j button if we would like to try that for the heaving. We have decided not to proceed with that. I'm not sure if I posted it, but the gastro doc didn't find anything wrong with Ivee's esophagus or stomach. He believes the heaving is neurological do to all the trauma that her brain has endured with surgeries and radiation. SOOO

We are trying a appetite "increaser" trying to get Ivee to want to eat by mouth. We are attempting to approach this from a new point of view. Treating her aversion to foods and textures.

We will be leaving for Memphis September 26 for her 4 month check up. Sept. 26 is also Chili's St. Jude day. Go to your local Chili's restaurant and eat lunch or dinner or both. All the net profits they make that day will go directly to St. Jude. You wouldn't believe what this restaurant has done for St. Jude and how they have made treating our children so much easier and better. And in case you didn't know, Kay Jewelers and CVS pharmacy also give to St. Jude.

Please continue to lift Ivee and her friends up in prayer. Many of those children are on my list to the right. Add to that list Ronan and Dillan, two new ependymoma patients. Say an extra prayer for Aaron B who just under went a 12 hour surgery yesterday to remove 2 tumors from his spine. Allison, Lucy, Justin, Nora and many others begin their last rounds of chemo this week. Pray for an easy treatment and quick recoveries so they can go home!

Just a friendly reminder that it's Childhood Cancer Awareness Month. Click --> Ivee's St. Jude Journey

September is Childhood Awareness Month

2011-08-31T08:40:00.002-05:00

Sept. is Childhood Awareness Month. I just changed my profile picture on Fabebook to the one above in honor of mycIvee who has been fighting a malignant brain tumor for almost 5 years, since she was 7 months old. She has known no other life than a life of medical treatments, cuts, surgeries, pokes and prods. If you have a Facebook or some other social networking account, consider changing your profile pic to a gold ribbon & spread the word about childhood cancer for the month of September. 46 kids are diagnosed & 7 die daily from some form of cancer. If you would like to help with funding for research, give to St. Jude's Children's Hospital or any other childhood cancer associations (ie. Cookies for Cancer, Childhood Cancer Association). BUT mostly, send up your prayers for a cure! Only God has the power to heal or provide the man made resources to do so. God bless you.

Sum of last weeks visits

2011-08-29T09:33:00.001-05:00

I don't really want to or have time to go into details on the specifics of our meetings last week. And most of the time when I read a blog of update, I want to get to the meat of it all, not necessarily the entire days outline of events, not to say that anyone shouldn't write what they want to on their own website.
Thursday Ivee had a GI Contrast study done (to prove the existence of her paraesophageal hernia), and boy was that fun...she said sarcastically! The radiologist did say he saw it there. The surgeons are not certain they want to do anything to repair it, being that Ivee's gastric (mic-key) button has her stomach "anchored" to her abdomen wall. They said they might want to possibly address the "heaving" with a g-j tube, which goes from her g button site to her intestine. It would depend on what the endoscopy showed on Friday.
So, Friday we prepared for the endoscopy (same freaked out little girl about having to have one more thing done). The procedure went fine. Dr. Whitington came in after to discuss his findings, that Ivee's esophagus and stomach along with her nissen fundoplication all looked fine and in tack. The hernia having nothing to do with the heaving, he says, put that aside...this means that Ivee's heaving attacks are in his opinion all do to neurological damage. Not what I wanted to hear, but relief at just having an answer. So, in other words, there is one darn thing I can do or have done for Ivee to relieve her of the heaving. It is something that we will have to continue to live with, for however long, praying that God not only heal her of cancer, but that he heal the inside of my little ones head.
Dr. W does want to try to get Ivee on a medicine to increase her appetite so that we can continue to help her want to eat by mouth and in encouraging her to do so, perhaps, we can alleviate the aversion she has to food, textures and all things that do make her have a strong gag reflex.
As for surgery, my thoughts are, if this is neurological, what good would it do? Now, if she ever looses the g button (due to the fact that she's eating), then they will probably need to fix the hernia. But, if the hernia isn't the cause or it's not putting her in danger, then I guess we won't be doing anything about it.
I'll should hear from someone in surgery this week.
Still praying for my Ivee and her friends. Today Aaron B. and Isaiah have MRIs. Praying for great results. Nicky had a good MRI report Thursday. Lucy, Allison, Justin, Ronan, Haley, and so many others are still enduring chemo and treatment. Continue to lift them up in prayer!!! And praying for continued healing for Brandon, Levi, Olivia and so many others!

Medical Update

2011-08-10T13:52:00.000-05:00

Sorry, just now getting to sit down and give a brief update on Ivee's medical visits.
1. GI: Will do an endoscopy on Ivee in a few weeks to look at her esophagus and fundoplication (stomach rap) to see if it is too tight or okay. (hopefully we'll get to the heaving issue by process of elimination.
2. Endocrinologist: He said, yes she is small, but she was small when we brought her to St. Jude in 2007. She is in the 2 percentile. No surprise there. He said that over the last 4 years her bloodwork and test have looked good. In some cases where radiation has affected the petuatary gland, you can't necessarily tell until they are older, which is why she hasn't needed to see anyone until now. Even now, though, at this point she is looking okay, that is the thyroid, blood levels, and adrenals. As for her ovaries, thanks to chemo as well, we won't really know if they are affected until she reaches puberty (about 12).
3. Surgery consult went well. First, he needs visible proof of the paraesophageal hernia, so the GI doctor will have to run some test to confirm this. Second, in examining her stomach, he noticed the bulge above her mickey button/naval and said that she may also have an abdominal hernia. So, we are perhaps looking at two hernias. The ideal situation would be to do a laparoscopic view and see if he can repair them that way. If there is two much scar tissue from the previous surgeries in her abdomen, he would have to cut her 6 inch incision open and again to repair it that way. Of course, laparoscopic is much less evasive and faster recovery time. Third, I made a comment about her mickey button being a bit tight (in my eyes). He confirmed to me that she needed a bigger one. The one she has is usually used on 1 year olds. Ivee is the size of a big three year old, so, once again, I'm not surprised that this was somehow missed here back at home with the old doctors. I will continue to keep an eye on it from now on an make note if I ever need a surgeon at St. Jude to look at it.
4. On the way home from Memphis, we kept her appointment with her orthopedic in B'Ham. This was the only part of the trip where I felt the most positive news. She said Ivee's xray looks great, her gate is great and she heals unbelievably well! That part I already knew. She heals so well, that she had to have 4 hickman line surgeries just because her body refused them and would push them out, healing! If nothing else, I can say my baby girl has a little Wolverine in her. Now, if only it would fight off this cancer and keep that out of her body!
We'll be returning to Memphis the week of August 26th for the procedures in GI. I wanted her to get in school for at least a little while. Her next MRI is scheduled for September 27th and I believe that we will probably end that visit with a surgery to repair her stomach. Prayers and more prayers.

Prayers.....

2011-08-02T22:18:00.000-05:00

I'm updating on the eve of our next trip to Memphis. As we are returning for issues non-cancer related, it doesn't make the trip any less important/stressful/long/hard....all those things. I know this isn't necessarily a website for my thoughts and feelings on all things in our family, but mostly that is because my "family" blog became my "what's going on with Ivee now" blog with a little bit of family thrown in. But, as I am farther along in this journey, especially more than most of my cancer friends, I have a less "busy" medical schedule and we are in our new normal. Our normal is a life with therapies thrown in, tube feedings, moments of heaving, not wanting to walk and eat and occasional doctor visits (usually once a month), but mostly kids, housework, cooking, entertaining, and finding ways to "give back" or minister. Yes, everyday I must deal with Ivee's "medical" side and the deficits of her cancer. It has been this way for 4 years, 8 months and 14 days. Life has never been put on hold for us to just stop and breathe and take it all in. Tonight I was taken back and reminded. Let me share briefly.
I leave for Memphis tomorrow. I just got home Saturday from a trip with my sister and our 6 kids to visit the other sister in Jacksonville, FL, whom we don't get to go see very often. I knew if we were going to try to get there, it would have to be before school starts on August 15th. We had a wonderful time, even took the kids to Seaworld, and Ivee had a blast...well worth the trip. On the way back Saturday, I was looking forward to seeing Emmett. 2 1/2 hours away from my sister's house in P'Cola (where I would take them back to) we got a phone call from my B-in-law, who had been in a car accident. So, getting back home wasn't all we had hoped for, with daddy standing on the front porch waiting for us to drive up, like he does many times when he misses us. Instead, he drove to P'Cola and took the BIL home for my sister. (Yes, he is okay, just a sprained knee). I told my sister, welcome to the Foley family adventures. You never know what could be coming next or make you change your plans. Well, I knew a week before Jacksonville that Memphis would have to happen the week after that trip. It is tiring to do one trip then turn around and do another, but St. Jude was able to get it all done for us and all in one day and before school starts!!! So, we go with the flow. I had planned to get the house in order and pack tonight when I got a FB message from one of our FAVORITE nurses here at home in Mobile at the children's hospital. A family was there who's 10 month old was just diagnosed with Ependymoma and had a resection (not gross total) and a shunt placement. She asked if I could call them, and yes, she had their permission. Well, I will always allow God to use me and I called. The mom was busy getting lunch and taking a quick break. I told her to call me back when convenient for her. The more I thought about it, the more I felt compelled to go up there in person. The drive over the bridge to Mobile is a familiar one, but tonight my heart was heavy and my mind was flooded with memories and my voice couldn't even utter the words to "Healer" as I listened to it on the radio and cried. Praying the words over this little one.
We stayed for about 3 hours, just talking, listening and sharing. I remember the smell of those hallways, the beeping of those monitors and the faces of the nurses who recognized us (and their relief at knowing Ivee was not in the hospital but we were just visiting). It meant so much to me to able to be there for this family at the beginning of their journey, to answer their questions and offer them advice. When we began this journey so many years ago, we were so lost and didn't have any help, for there were no other families we could talk to. No one who knew our pain. No one to tell us how to watch out for our child. They are taking their baby to St. Jude once he is able to go, and I was there to calm any fears they had about moving there for this time and trial in their lives. I was able to tell them what a WONDERFUL place it is for a child who has ependymoma.
So you see, I am living a life that for 4 years 8 months and 14 days has had many unexpected moments or "opportunities" to arise. I live everyday not having an expectations, but hoping for normalcy...our normalcy. But I can say...I don't make promises (just ask my children), because I don't ever want to be labeled a promise breaker by my children or any one else. BUT I promise that as long as God gives me the opportunity and opens the doors on this journey, one that I would not have chosen, I will do my best to be a witness and minister to those who walk the same road with us.
So, my family of prayer. I ask for prayer for Baby R (as I will call him) and his family as they begin this journey. I ask for prayer for Frederick and Anderson's families as they have lost their battle to ependymoma a few days and weeks ago. And I beg of you for continued prayers of healing for Ivee and all her cancer friends. You are our prayer warriors and we love you all!!!!!!!!

Team Ivee shirts

2011-07-21T22:07:00.001-05:00

Going to place another Team Ivee shirt order soon. If you didn't order yours last time and want one now, please see the link to the right on this page for information. If you choose not to use paypal, you can mail a check to me instead. Just let me know, and I'll get you my info.

So...about Ivee's issues...

2011-07-21T15:39:00.002-05:00

SOMETHING is going to happen.
After a long day of phone calls, looks like we'll be headed back to Memphis the first part of August to address Ivee's stomach/hernia/heaving and head swelling. It is so great to have a doctor (that after talking to his nurse and her relaying the info I gave her) had her call back immediately cause he wants her up there and this taken care of once and for all! He's tired of the run around and "no idea" answers I've been getting back here at home. So thankful to feel like we are getting pushed up on a priority list instead of pushed to the side cause she has something no one wants to deal with.

And so she goes, and goes.....Thank Goodness

2011-07-20T11:31:00.000-05:00

Yes, Ivee has been doing so well with her potty training. 3 days in a row now and no real accidents. She's just had what I call the occasional 'Peed in my pants from laughing to hard (or sneezed)' spot. Some of my "older" friends know what I'm saying :). She looks so very well. She is becoming a typical 5 year old, with sassy comments and occasional hissy fits, especially during PT. She is doing hippotherapy (PT with horses), and she's been 4 times now. All 4 times the therapist hasn't gone more than 20 - 30 minutes before a meltdown. The sessions have gotten better (attitude wise) each time, but Ivee still shows that stubborn behind of hers each and every time. It's amazing that they can throw the biggest fits about the easiest things. Things that I can get her to do without throwing a big one, but the minute a therapist touches her all the crap hits the fan. I always said from the very beginning that Ivee could smell a therapist driving up the road, and she let you know before they even touched her that she wasn't going to cooperate.
Now, on to the issues she's still having. The hernia is just giving her so many problems right now. I have noticed the lump in her belly has gotten larger the last few days. She's is gagging more frequently, and for longer periods of time. It was just in the morning time and only for a minute or so. Now it seems to last over a span of 30 minutes and comes and goes throughout the day. Last night, Brittney said she was up quite a few times with her. Poor Brittney stays with her at night. She's such a good big sister. I am trying to get Ivee in with a different GI doctor, being that the one I took her to before hasn't been very helpful. Hoping to get some answers, cause everything they thought it might be and all the treatments to eleviate the issue...it hasn't worked.
The kids and I are leaving for Jacksonville with my younger sister and her 3 kids this Sunday to go see my older sister. 8 people in the car, one a baby, should make for an interesting drive!
Keep praying for Ivee and that the GI issues will be solved soon!!!

We need your VOTE!!!!!

2011-07-08T08:03:00.000-05:00

Please take a moment and visit the link below to cast your VOTE! Help Ivee and other children get the money to help continue researching pediatric cancer! EVERYDAY...TODAY...46 children will be diagnosed with cancer and 7 children will lose their battle to it!!! It only takes a moment, please vote. We are 5,000 votes behind the lead charity.

http://www.vivint.com/givesbackproject/charity/1262

Ivee meets the dinosaur of her dreams!!!

2011-07-01T15:24:00.001-05:00

http://www.youtube.com/watch?v=X-we8HVtAXs&feature=youtube_gdata

Visit the above link to see!!!

Much to say about Disney and MRI's

2011-06-28T08:39:00.000-05:00

Yes, So I am permanently back at home, at least for a few weeks (I pray). Since I have been gone and done quite a bit in the last 3 weeks, this post will be a bit lengthy.
I'll begin with our trip to Disney/Orlando. I wish I could say it was AWESOME, but that doesn't quite describe it. It wasn't horrible, by any means, but in hind sight, I would have delayed the trip for a few more months. It would have probably been best to go in the Fall. Ivee wasn't much for leaving home after only having been home for 7 weeks. Now, it wasn't a bust, by any means. I just believe her lack of enthusiasm was a mixture of being homesick, being a bit tired of going and going, and the fluid build up in her head (which I will discuss later on in this post). The facilities used for Make-a-wish kids was also full, so we had to be put up in a Disney Hotel, The Grand Floridian. Not complaining, cause it is quite a nice place, but Give Kids the World had so much more available for her. We would have preferred being there, but I told the kids to eat up the Disney Resort, cause they would never be staying in one again (well, not that one)...not unless the family strikes oil somewhere!
Well, let me get off of the negative and try to get on with the positive....
We were able to use the GKTW facilities even though we had no room/house there. The pool was nice, the food was decent, and the FREE ice cream anytime during the day became a family favorite! Ivee always ordered the chocolate, white and pink/or orange, depending on her mood. She always at least at a couple of bites. Ethan always order cookies and cream with wiped cream and cherries. Em, Britt and I ordered shakes. We always seemed to get 2 shakes each and Ethan had a mound of ice cream. They didn't play around. They meant it when they said we want you to eat all the ice cream you can! On Thursday night, It is Christmas there. We didn't get to stay for the parade, everyone was just too tired from the day, but Santa did get to hear from Ivee and gave all 3 kids a present. Ivee was not too hip to the fact of seeing him...in fact, she cried the whole time we were outside waiting. BUT the moment she saw him, she was as happy as can be! This became the norm for our entire trip. Ivee cried about everything we wanted her to do or see, but the moment we did it or saw it, she was fine. I believe there is a reason for this, but I'll get to that later down in our medical update paragraph.
The parks....well...let's just say...Universal Studios has the star treatment down to a T!!!! When a character (ie. Scooby and Shaggy, Marilyn Monroe, Simpsons) saw Ivee, they would blow off other kids to just get all over her, loving on her, taking pictures. I couldn't believe the attention they would pour out on my kid! If you were going to go on a ride, you just showed your pass, and you didn't just get in the fast lane. They called for an escort and took you to the very front...no waiting. And they have a cool (literally) child swap area so no one has to wait out in the heat to switch out on rides Ivee can't ride. Unfortunately, Universal parks aren't really for the little one, so we visited there the 1st two days. Ivee was quite moody for all of it, but her reaction to Barney was the best. She must have cried for 10 minutes waiting with us to go in. Just wasn't feeling it. Then as the lights went out (cause Barney pops out of the stage) she became frightened. The lights and music come on and she had that look of fear that turned into a look of pure admiration. It was priceless, and I only caught the end of the look on film. It was like a 12 year old being 5 feet away from Justin Beiber at a concert. PRICELESS! She did ride the carousel and 1 fish 2 fish ride at Dr. Seuss land, but we had to force her onto ET.
So, Friday, we decided to do a "no park" day. We just woke up late, went to GKTW and swam for over an hour. She loves to swim!!! (If you all didn't already know that!) Then we went back to the room, relaxed for a few hours, and went to Medieval Times that night, a dinner theatre. She wasn't too keen on being there at first. The lobby was very loud, but she did really get into the show! Em, the older kids, and I loved it. It was fun, different, and entertaining. The men in that show are very talented, hardworking, and skilled at what they do! Very impressive.
Saturday was our first day at the Disney parks, Magic Kingdom. Ivee was able to skip the lines for character meetings there. She enjoyed the castle show, riding the carousel, and she surprised us completely by wanting to ride the tea cups. I took it easy and didn't spin us. That evening she had an appointment at the Bibbity Bobbity Boutique where she received an authentic Cinderella dress (she chose Rapunzel, but they were out), shoes, crown, wand, and had her hair, face, and nails princessified! After that we meet Mickey, Minnie, Aurora, and Cinderella herself!
We ended out the trip at Hollywood and Epcot, just taking it easy. It was quite hot there in Orlando, but not any different from being at home. Except at home we just stay inside if possible.
We were home for one day to pack and leave for St. Jude for her follow up MRI. She was NOT happy about leaving home. Home is the only place she wants to be right now. I can't blame her. We have been away from home this year for more than 80 days! She had pretty bad anxiety on Friday. Getting her port accessed is always traumatic for her now, and then we had difficulty getting blood return. She cried on the way into the doctors office as well, which is highly unusual, but child life helped out by letting her dance on the Wii. That girl loves to dance. The MRI revealed no sign of tumor, Thank you Jesus, but the fluid on the back of her head, that I've been very concerned about, showed an increase and it showed signs of compression on her brain stem. This is the reason I don't think she's been in best spirits and not quite herself. She just isn't feeling all that well. Dr. Merchant is going to discuss with Dr. Boop what they should do about the fluid. They believe it is a leak in the head, possibly an opening of the surgery caused by the radiation. As I've stated before. They are not suppose to radiate more than one time. 2nd dose radiation can have devastating effects on the tissue of the body and vessels. So, this is a concern for us right now. HOWEVER, she is doing amazing! For the effects that radiation could've had on her, this is something that seems small. However, could lead to another surgery. We just don't know right now. Also, I will be taking Ivee back up to Memphis to see an endocrinologist and GI doc (since I don't like ours here) to get this hernia of her belly taken care of and to find out why she is heaving everyday.
Well, I could talk more, but I feel I have already made this post way too long. Thanks for the prayers and continue taking Ivee to our Savior in Prayer! We are never over the mountain so much that we don't need prayer! I will be posting video and pictures later on. I have to go grocery shopping now!!! Thanks and Love!!!

A trip to see the Neurosurgeon

2011-06-09T08:32:00.001-05:00

The neurosurgeon agreed that the swelling is just probably at reaction to the radiation, but it made us feel better for them to take a look at her before we take her on vacation in Orlando. It's something that we already had heard over the phone and from the pediatrician, but it is comforting to hear it from an actual neuro doctor! So, we are preparing for our trip down to FL with only 5 days to go! Ivee is super excited and keeps telling everybody she sees, mainly doctors, about how she is going to Disney to swim!! Today will be the last day she has a doc or nurse touch her for a while. It is Port Flushing Day! Boo :( She hates having her port accessed, but at least she didn't cry and kick or try to hide when I put the numbing creme on this morning. I won't have much time to post once we are back from Disney. I'll be home one day and then I have to drive up to Memphis for Ivee's check-up and MRI. So, if you're not already, go ahead and be sending up NERD (No evidence of Recurrent disease) prayers for her MRI.

The latest on Ivee

2011-06-06T09:31:00.002-05:00

Ivee is doing well. We are still concerned about gagging/heaving and swelling in the back of her head. This morning, her little eyes are bloodshot from it! Her daddy wants me to get her in with the neurosurgeon here in Mobile (I don't really want to drive to Memphis, but will if I have too). The swelling seemed to have gone down, but is worse again this weekend. Since our Make a wish trip is next week, I would hate for anything to go wrong while we are in Florida. (We are all sooooo looking forward to going. It is a much needed break from reality and work.) She is suffering from sinus issues as well, which is what we are hoping is the cause of the gagging/heaving. She is on an antibiotic to help get rid of any possible sinusitis, but so far she is still having issues. She has also complained of back pain on and off, nothing consistent, but as a momma of a kid of brain cancer (that can also go to the spine) I am concerned and aware of every complaint. We are in the process of trying to potty train, but this is very difficult for Ivee. She has very little to no warning that she has to go tee-tee, so this will be a going potty based on habit more than based on sensation.
So, please lift up a prayer that Ivee's head swelling is still just trauma from another dosing of radiation, that the back pain is nothing and that this antibiotic takes care of what is causing her heaving. If the heaving has anything to do with her paraesophageal hernia that means another set of test and visits to the gastro doc, whom I don't really care for!
"Heal me, O Lord, and I will be healed. Save me, and I will be saved, for you are the one I praise!!!"

12 more days...Florida isn't far away

2011-05-31T08:52:00.000-05:00

Hold on, this is a long post!

We are all excited about our trip to Orlando and Disney in 12 days, but I am a bit anxious as well! Ivee is still having gagging/heaving in the mornings, and sometimes throughout the day. She also still has the fluid build-up in the back of her head. She still shows no signs of shunt malfunction, but I stay concerned! I believe the gagging/heaving is stemming from constant drainage, and since she has a difficult time with swallowing, it is leading to the issues. Unfortunately, Ivee has a paraesophageal hernia, and the heaving really does a number on her little tummy that has been through the horrors of a nissen fundoplication pyloroplasty surgery. She also has been complaining on and off about her back hurting, and though I'm not overly concerned, it's always there in my mind. (Since her cancer can grow in the spine as well!) I am going to take her to her pediatrician today or tomorrow, I hope, to try to get her some relief from the drainage issues before we take her on her MAW trip.
On a good note, she is doing well! She is walking with the walker better, wanting to walk more, she has finally gained weight on a constant bases (there was a whole year + where she didn't grow at all in weight or height), and she is learning how to potty train. The potty training is taking effort on mommy and everyone's part. She doesn't have a great "warning" mechanism, so we ask her all the time, and many time she concentrates and tries to go. She has a few accidents here and there, but we all know this is going to be a long work in progress, like everything else in Ivee's life.
A funny Ivee story from the other night. She doesn't like to eat by mouth, and struggles with doing so, but sometimes she asked to eat. 2 night ago she said, "I'm Hungry." Here is the conversation that transpired.
I asked, "What do you want?"
"Chocolate pudding."
I thought to myself, "Great, I know we probably don't have any in the fridge." I looked and all I could find in there was vanilla. So, I held it out and showed her and said, "Ivee, all I have is vanilla."
She gingerly sang, "Chooocooolate."
I gingerly returned, "We don't have chocolate, all I have is vanilla. Is that okay."
She shook her head telling me no.
I said then, "Ivee, I don't have chocolate."
Then she cocked that little head to the side and said Oh, so sweetly, "Go get some!"
Well, after I stopped laughing, I found some mix in the pantry and made it myself! She manage to take 5 small bites...baby steps!
Today, our St. Jude friend, Brandon, has his MRI. Praying for great results for him and praying that God has shrunk or completely killed all of Brandon's tumor! Many other St. Jude friends are returning for treatments of chemo soon. Praying for Haley, Lucy, Justin and Allyson!
We return to Memphis on June 24th for Ivee's check up and MRI. Praying for NERD (No Evidence of Recurrent Disease)!!!

On a final note, this is copied from a friends CB site. If you can find the time, please help to make our lawmakers aware! I will typing my own letter about Ivee and making the government aware of my child!!!

More funding is needed for childhood cancer research. Funding was cut this year by 10% when the NCI (National Cancer Institute) budget was cut by the federal government. NCI funds the COG (Children's Oncology Group) hospitals where over 90% of all children with cancer are treated. COG hospitals develop treatment protocols and carry out research important to development of new and innovative curative therapy. There is a way that you can help to urge your senator to increase funding for childhood cancer in the 2012 fiscal year. All you need to do is ask your senator to sign-onto the letter that has already been sent to their office by Senators Reed and Isakson. This letter is asking the Senate Appropriations Committee to fund the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008.
The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 was passed unanimously by the senate and appropriated 30 million dollars a year toward funding efforts for childhood cancer. The funding was for fiscal years 2009-2013. Even though the Act was passed unanimously the appropriated funds have never been allocated as promised. The Senate Appropriations Committee has never voted to fully give the allocated funds from the budget. In 2009 there was no funds allocated. In 2010 only 4 million was allocated but none went toward funding research. The 2011 allocations were difficult to find but might have been 10 million and I wasn't able to determine where the funding went.
How can you help to convince the Senate Appropriations Committee to fund the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008? By asking your senator to sign-onto the letter written by Senators Reed and Isakson. In your letter make sure that you state that you are a constituent. State why you are supporting funding for pediatric cancer. Reference the letter written by Senators Reed and Isakson. You can attach the 2 page document if possible in your email. I posted the link to the PDF file below. Give your address and ask to be informed of their decision.
There isn't a lot of time since this letter needs to be signed by your senator by June 8th.
If you are reading this then I know you have an interest in finding a cure for childhood cancer. I have sent the letter below to both my senators today. Feel free to use parts of my letter to send to your senators. I read a blog today that said in 2010 more money was allocated by our government to help fish migrate than to find a cure for childhood cancer. Does that mean that our leaders think fish are more important than our children? Let our leaders know what is important by sending your senators a letter today.

My letter follows:

Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) are spearheading a bi-partisan effort to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012. Your office has recently been sent a two-page correspondence from Senators Reed and Isakson. I would like to urge you, as my senator, to sign-onto this letter.
As a mother of a child who was diagnosed with cancer, I am frightfully aware that more funding is needed. My son, James, was diagnosed with a common form of childhood cancer, yet his odds of 3-year survival are listed at only 48%. There are many children with far worse odds than my son. If he had been diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) he would only have a 1% chance of survival. It is clear that advancement in treatment of childhood cancer is greatly needed. 2/3 of children who survive have long-term debilitating side effects from treatment. Some of those side effects are fatal. Cancer remains the leading cause of death by disease for children in America. Every year 15,000 children are diagnosed and more than 2,000 children lose their battle. As your constituent, I ask that you sign-onto this letter addressed to Chairman Harkin and Ranking member Shelby of the Appropriations Subcommittee for Labor, HHS, Education and Related agencies. The letter requests the appropriation of funds consistent with the goals of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 (P.L. 110-285). The letter requests funding from the 2012 fiscal year budget for childhood cancer research, surveillance, and educational programs. The NCI (National Cancer institute) consistently spends less than 5% of its annual budget on childhood cancer research and publicly states that more could be done on its website. The letter asks the appropriations committee to provide funds for NCI to increase research efforts for childhood cancer.
To sign, contact Kate Mevis with Senator Reed at Kate_Mevis@Reed.Senate.Gov or Tyler Thompson with Senator Isakson at Tyler_Thompson@Isakson.Senate.Gov by June 8th 2011.
You can download the PDF file of the letter at
http://curechildhoodcancer.ning.com/forum/attachment/download?id=2253982%3AUploadedFile%3A116271
Please inform me regarding your decision about signing the letter. My address is 3300 Morning Star Drive, Helena MT 59602.

I hope you can find time to help with this.

Update from HOME>>>>>

2011-05-08T21:39:00.002-05:00

Ending of a great Mother's Day and a sweet little girls 5th birthday!!! My baby is 5!!!!!!! I can't believe that she is already 5, but Oh God, how thankful I am that she is!!! We are getting settled back in at home, and I forgot how difficult it can be. I am a come home and get everything unpacked and everything needs to be in it's place kinda person..BUT...reality has a bite! After scrambling to get the kitchen cleared of our boxes from Memphis and cleaned up, I realized that I am not necessarily in need of being needed....but that I am definitely needed around here! My house is usually what I call "organized chaous" but not everything is where it should be, toilets were not clean and food was on the kitchen walls. LET ME STATE, however, I do not personally hold my husband responsible. My kids know to keep their rooms and bathrooms clean, they know how to clean up the kitchen and how to throw trash away. They just didn't have someone on their case about it, so they didn't care. Daddy would tell them to do things, but he works a fulltime job, planted the garden, made sure the dogs, cat, turtles and chickens didn't die, did feed my kids, and he can't always do the follow up to make sure they cleaned things the correct way. Just goes to show you that no matter what age they are, most kids really don't care about anything until they are the ones that pay for it or own it! My sister was a prime example of that...she was a slob as a kid, but now in her life or marriage, kids and working, she is a great mom/wife. So, my kids aren't perfect, and I will be back on the nag train this week. School will be out in 3 weeks, so I will make up for missing the Spring Cleaning around here. I will begin the unpacking process tomorrow when the kids go off to school. It will be nice to get all the suitcases and boxes put away, at least for 6 weeks when we'll go back for her follow up MRI and visits.
I did get hit with alot of things I wasn't prepared for this week. Like a "surprise" choral concert for Brittney that she just found out about this past Tuesday, vet visits on Tuesday for my dogs and an orthodontist appointment for Britt on Thursday. And I thought I would have a week to settle back in. I hope the homework load is easy this week!
Ivee is doing well, and as of yesterday didn't want to go to school on Monday. She wanted to stay home with momma!!! As of tonight, she wanted to go to school to see Ms. Brooks (her teacher). She only has the 3 weeks left, so as much as I will probably miss her, I want her to go and be with her friends and get in lots of play time, therapy, and learnin'!!!
I am getting really excited about Ivee's make a wish trip in June. She is so excited about "swimming at Disney World." We'll hopefully be having her wish party soon. I think it is going to be a great and very well deserved trip for our family.
Well, I have to go finish the laundry and prepare for cleaning and doing yardwork this week. Continue to pray for Ivee's continued healing. God give her renewed health.
God bless you all....Hope
"Heal me, Oh Lord, and I will be healed.
Save me and I will be saved.
For you are the one I praise."
Jeremiah 17:14

2 more days of 2nd dose RT

2011-05-04T19:58:00.000-05:00

Yes, two more days, and we are excited. Today was a long day and Ivee didn't really feel like cooperating. Tomorrow we start a late day, not until 11:30. She has a longer sedation time cause she has an MRI following her radiation treatment. Then a surprise for her, hopefully all will go right and Daddy will be coming up tomorrow afternoon. We saw Dr. Merchant today and he is happy with Ivee's progress. He watched her walking out the door today, leaving me behind and she took the nurse and ran off, and he just watched her and said, "She is doing so well. Really walking well and seeming like she is fine." He continued to to say, once again, how nervous it makes him to do 2nd dose radiation, mainly cause of the detrimental effects it can have on breaking down tissue and veins in the brain, and the deficits it can cause developmentally. He is just very pleased that Ivee doesn't seem to be showing any signs of deficits right now. That is what we are continuing to pray for. If I haven't said it before, I'll say it now...I love THAT MAN!!! He is a great doctor, who truly, genuinely, and absolutely has a desire to save my child, but not only that, to give her the best life possible after doing so. He is a blessing from God, and Ivee adores him as well. I'm sure he has a soft spot for her as well, as he has shown in many office visits.
Ivee does have an MRI tomorrow, where we not only will be checking for tumor, but mostly checking for tissue breakdown or weaknesses. Please, send up a prayer that Ivee's little brain, veins, and everything in there look healthy as possible. She has already suffered damage from past surgeries and treatments and has severe scarring in there as well. I'm praying that there is nothing new....at all!!!!!
Also, praying for safe travels for daddy tomorrow and safe travels for all 3 of us Friday. It is always strange to come back home after being gone for 2 months. It almost feels foreign, and then everyone has to all learn to live together under one roof again. Back to the old grind after developing new habits.
On a separate thought tonight, lift up a prayer for my friend Tony Shoemaker. His beautiful and wonderful wife Dee passed away today after battling chronic pain for a few years from a car wreak. She was the sweetest lady and one of the first people to introduce herself and make me feel welcome at our church.
That is all from the Foley's for now. Always many thoughts rambling around in this head of mine, but I can't put it all out there, especially since you don't want to hear them all and some might make you wonder what kind of mind I actually have....it is a bit insane in there at times.
Love from Hope and Ivee
"Heal me, Oh Lord, and I will be healed. Save me and I will be saved. For you are the one I praise." Jeremiah 17:14

T Shirt Orders

2011-05-02T20:05:00.002-05:00

Ordering the tshirts this weekend. So, order now if you want one. Click the link Team Ivee logo to the right.

Is it time....

2011-04-27T15:14:00.000-05:00

Almost...... 7 more treatments to go and we'll be home in 9 days...if weather permits. 11 more days and my baby will see 5 years on this earth! As I stated to a lady recently...many people in this world as saddened when their kids birthdays come around. They want them to stay 4 or 5. To keep them little, in their grasp, safe and not let them grow up. Yes, I understand missing that "littleness". But, once you become the mom of a child with cancer, you celebrate (perhaps "overly" celebrate) that achievement. You can't wait for your child to be 6......13........18.......30.....60. You long for them to reach that next year, that next step, that next milestone. I know their may be time when I look at her and I only wish that Ivee could be a normal child.... eating, walking, standing, able to get around, going potty on her own. BUT, if I have to beg her to try food (like many parents have to do anyway), if I have to help her to get around the house in a wheelchair or pick her up to put her in her walker (even if she's 100 pounds), even if I have to change her diaper til she's 15, I'll take it. I'll take every ugly word she might say to me when she's 16 and wants to do what her other friends are doing. I'll take her moments of rebellion. I'll take her need to become independent, even when she can't be, and she throws a fit! I'll take the gagging and the obsessive compulsive ways that she hates food on someones mouth. I'll take her OCD tendencies that tend to make her difficult to play games with. And I'll take her ability to teach me patience, being that she is a child that takes her own time and is never in a hurry (NO MATTER WHAT)! Which is totally uncharacteristic of her mother who always wants to get where she needs to go on time, if not early, and at a constant pace! So, while most mommy's cling to their childhood, I dream of the day my baby gets her license, her heart broken by some stupid boy, graduates high school/college, meets Mr. Right, and travels the world chasing her dreams.

I have so much more on my mind, but I feel if I share it all I will be preaching, and I don't really feel like hurting feelings or getting on a soapbox right now. I will leave you with this bit of information though. Let me state before I move on though, I in NO WAY am telling you where to donate money and that something is more important than the other, but if you are a supporter of funding research for Childhood Cancer, you can't give to just any group and expect Ivee and her friends to benefit from it. More than likely, it won't help them at all. There are some fundraising groups, hospitals or societies that give as much as $.87 out of a $1.00 to their patients and research (St. Jude, St. Baldricks, Alex's Lemonade Stands and more being just a few)

Article:

Do you know where your money goes when you donate?? If you give to Relay for Life hoping to help children, did you know that less then half a penny goes toward pediatric cancer research. Read the info below (just a clip from the article on 1 cancer institute) but for info on all of them and where your $ may go visit this site to know the facts. http://curechildhoodcancer.ning.com/forum/topics/so-where-does-the-money-go

The American Cancer Society

The mission statement of the American Cancer Society (ACS) reads: "Founded in 1913, the American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. With more than two million volunteers nationwide, the American Cancer Society is one of the oldest and largest voluntary health agencies in the United States. Headquartered in Atlanta, Georgia, the ACS has state divisions and more than 3,400 local offices."

Many chose to become involved with the ACS fundraising events, including the "Relay for Life". The funds collected by the ACS are used for many causes. The numbers, in millions:

Childhood Cancer Research - $6.2

Other Research - $143

Prevention - $177

Detection/Treatment - $129

Patient Support - $275

Management - $63

Fundraising - $222

Looks black and white to us. The numbers speak for themselves with regard to the funding for childhood cancer, but just to be clear, 0.6% of funds are directed towards research to cure the entire suite of childhood cancers.

Imagine you participate in a Relay-For-Life. You raise $1,000. $270 (27%) goes to admin and fundraising costs. Only $150 goes to any research, and only $6 of that $1000 you raised is targeted towards childhood cancer.

(for more statistics on groups like National Cancer Institute, The LEUKEMIA & LYMPHOMA SOCIETY, and more visit the site posted above)

Prayer request...

2011-04-20T20:24:00.002-05:00

My Prayer family, lift Up Ivee's friend, Brandon. He has an MRI tomorrow and we are praying for the tumor on his brain stem to be smaller or GONE!!!!! Lift him up in prayer please......

We're 1/2 way there....

2011-04-16T16:17:00.003-05:00

Yesterday was the 1/2 way mark for treatment. 15 of 30 done. We've made many, many new friends here. Ivee performs for them all the time, and gets noticed everywhere we go. It doesn't hurt that she is always dressed like a princess. Who wouldn't notice the child with style :) She is getting nauseated from radiation. I am trying to keep the zofran in her on schedule to help with that. It doesn't take much to gag her. I was chewing gum the other day and it made her gag. Of course I threw it away immediately. Her port has been acting up, but we manage to get it to work every week. She calls it the "bad buddy." She has regained all the strength she had before the surgery. Her walking has improved much.
So, I know that everyone prays for us to return home quickly, and being apart is hard...BUT there are pluses to this journey. Not everything in life it negative. Would anyone ask for this journey...HECK NO! But God moves in all ways. One of the great things about St. Jude and the RMH/Target houses is that everyone is going through what you're going through...so when your 18 and have a bald head, or your face has been ravaged by cancer and you are here for reconstruction, or you have a vomit bag on your mouth...you don't have to be conscientious...everyone here knows what's going on with you and they are encouraging and praying you through. AND we are ALL missing our family and friends, so we cherish getting to know one another so you have someone to talk to!!! It's is bitter-sweet when someone goes home, like Momma Teresa. Boy we miss her around here. Many of us are scheduled to be here until the end of our journey, so we all have anywhere from 2 to 4 weeks. Some will go home for a little while to take a break, then be back for treatment in a month to stay for 4 months or longer. There are always new families arriving as other families leave.
On a plus side, as well, Ivee has been getting lots of mail and LOVES it!!! She wants to go check everyday and see if there is something new. It amazes us how many strangers are blessing us with prayers, cards and gifts.
I always have so many on my prayer list but these are the immediate ones right now. I would ask that you join me in praying for these children.
Aubrey-Facial reconstructive surgery and biopsy
Brayden- They are sending him home, they can't do anymore here for him
Justin-radiation, pray for blood counts
Haley-Like Ivee, reoccurance, 2nd dose radiation
Levi- finishing treatment this Tuesday, protection liver
Emily- radiation, chemo treatment
Brandon-Ivee's new BFF- radiation, chemo, steroids. Protection
Lucy and Miracle-Radiation, pray for blood count, protection
Chasity-Radiation, protection, decisions.
Anderson-Continue to ask God to heal him
Myah-Done with treatment, God heal her!!!
Isaiah-Continued healing
Dorian, Ivory, Lyssie, Noah, matthew- God just heal/save them

There are so many more, but these are the ones going through treatment, reoccurances, at the end of their fighting and need a miracle, and severe medical problems.

God bless you all and keep praying for us all!!!

Jeremiah 17:14
"Heal me, O Lord, and I'll be healed.
Save me and I will be saved
For you are the one I praise"

Prayer request...

2011-04-12T13:35:00.001-05:00

when you think of it, say a prayer today for Noah and Lyssie. They are desperately fighting for their lives. Also, say a prayer for Aubrey and her mother, Monica. Aubrey will be undergoing facial re-constructive surgery to help restore her face after cancer's devastating effects on her right-side of her face. So many request, but these are the urgent ones. God bless you all.

A long Monday to begin week 3

2011-04-11T23:16:00.000-05:00

It's late and I'm tired, but I decided to write a small note. We had a LONG day of appointments beginning with ALL 3 therapies!?!?! I'm beginning to question the sanity of the scheduler in RO clinic!!! As of Friday when I got our Monday schedule, I had a 45 minute break between to therapies, so my plan was to get breakfast then. As we checked in this morning, I saw that all three therapies had been scheduled, followed by Triage (where they access the port, take weight, height, temp, Blood pressure..blah, blah), then the clinic visit to see the doctor, then radiation. All to be done before 1:00 p.m. So, luckily, our OT, Ashley, let me sneak out for a bite. Then Ivee did very well cooperating for all three therapist, thank the Lord. All ran quickly until we hit radiation. They were 1.25 hours delayed getting her to sleep. I was starving, by then, Ivee, who has no appetite, is getting hungry. Once under, I ran to renew my meal card and grab a quick bite. Once Ivee woke up, it took an hour to calm her down. She just sat and cried for home, and daddy. Even calling him on the phone didn't make her happy. It wasn't a fit throwing cry, but my heart is aching and I am home sick cry.
Finally, she is asleep and all was well later. I haven't been sleeping well. Last night I had night sweats all night and dreams that don't seem to end. My family is missing me, especially my husband who had a rough, tough weekend emotionally. He's been doing well, but he really misses being able to have me around for sporadic talks. I miss him as well. Hopefully the kids will be good for him the rest of the week, and hopefully Ivee will wake up better after sedation in the next few days until Papaw and brother and sister come for a visit.
Okay, that was my quick note. Have a blessed night everyone, and read ya later.
Hope

Week two is almost at a close....

2011-04-07T16:02:00.002-05:00

Almost to the end of week 2 of RT. Just 4 more weeks to go after this one is over. We have made many friends here at the RMH. Even have our own supper club...where we banish all forms of hot dog!! Many of you have sent Ivee mail, and that just makes her day!!! She loves going to see if we have a letter or package in the mail. She spends her nights at dinner entertaining our new friends with her mad dance skills. She was really on it last night, and she had her friend Brandon laughing his booty off!!! It was great to see Brandon so happy. He ask to see his silly little friend, he was asking for her this morning. The sample T-shirt that was on back order has finally come in, so hopefully I can give my full approval for them to print the t shirts SOON!!! So, go ahead and get those orders in if you haven't yet.
On a serious note, she is handling treatment really well. We are still worried about what it is doing to her, but most days she is her cheerful Ivee self. The only hard, hard times is the 30 minutes after she wakes up from sedation. I feel like some days I am way too use to this life. I guess after living in it for over 4 years, it just is what it is!! This is what life has been since Ivee came into this world, fighting for life from the beginning. I guess it's like someone who's child has a disability from the day they were born. You know you have to learn to live with it so...it becomes normal. So, I sometimes ask myself....."Why in the world should a life with a child battling cancer for her life feel normal?!?!?!" I see the new frazzled parents just starting this journey, and those days of feeling like that seem like ages ago. Shouldn't I still feel frazzled? Now scatter brained....yeah, that is there. I guess I'm just not going through the motions right now. Maybe I'm just focused or maybe even comfortable in this role. I know that is wrong...but it's just so true.
Okay, I guess I'll quite with that weird stuff and just say.....we miss home, but things here are so familiar that it just seems like home #2. We are in Memphis so often during the year that someone was telling me where the closest post office was by street names, and I knew where she was talking about. I have developed a love for this city and for the people I know here. But, don't worry my Alabamians...we'll be home before you know it.
Much Love and keep on praying for Ivee....the blessed.

Begin Week two of treatment....

2011-04-04T21:08:00.000-05:00

Daddy and the kiddos left yesterday, and there was crying all the way back to the house (I think for Ivee and daddy). He's ready to leave the other two with me. I think there is a greater appreciation for momma now :) Ivee is looking forward to them coming back in a few weeks. Papaw will be bringing the kids up for spring break and their daddy will come up Easter weekend to get them.
Today was a crazy day around here. It seemed like all the kids waiting for treatment were on edge, kind of like a dog who is scared of storms. And it did storm here today...badly. They had to postpone treatments due to power surges, and this made all the treatments behind. Luckily, Ivee got hers before the surges, but these other poor babies were really delayed. The ones that have to be sedated are NPO (Nothing by mouth) 8 hours before treatment. Many are on steroids and they are STARVING when they wake up. So they are tortured to wait until treatment is over. The delay made it worse.
Ivee is cooping very well to our daily life. It's not an easy thing, doing all this, but we always seem to make the most of it. We have an amazing new bunch of "family" members here. We even have a "supper club" going on. It is nice to be able to reach out to these families and feel connected. It is so different then just the 4 to 6 month visits because when you live under the same roof together, you build a more closely knit relationship. I will follow these kids and their parents journeys forever, come what may.
So, when you say a prayer for Ivee, add Brandon, Levi, Emily 1 & 2, Lucy, Hutch, Chasity, Justin, Haley and Allison to your list. I'm sure there will be more along that way. God bless.

Into weekend #2...

2011-04-01T15:33:00.000-05:00

So, week 1 dose #5 is complete. I'm not sure I should call it #5 or should I call it dose #38. When this is all over, Ivee would have received 63 doses of radiation to her little body. I have met one other family here at the RMH who is dealing with a reoccurance of Medullablostoma. Even though it's not Ependymoma, we are all in the same boat. Unfortunately, she is having full radiation to the entire brain and her hair is falling out. Ivee's radiation is just focalized on the one spot where the reoccurance was. So, her mommy is going to have to buzz her hair off tonight. Another little girl's hair was buzzed at the beginning of the week, and she has been sporting some pretty awesome wigs today!!!

Ivee's been counting down the days til daddy arrives. She didn't mention anything today, but Emmett planned getting here today before she was to awake from treatment. So, as Ivee awoke from sedation I walked in. They say that the moment she awakens from sedation, is immediately ask for me. She saw me and said, "hey", then daddy popped out from behind me. Her eyes, as drugged as they were, popped open big and she declared, in her soft hourse little voice, "Daddy, you're back!!!" It was priceless. She was telling the nurse that her daddy was back! Then she ask to "Hold mommy." It is so sweet. When she wants us to hold her, she'll say "I want to hold momma" or "I want to hold daddy."
She has been looking forward to getting her "Buddy" out today. A "buddy" is the needle infusion line they put in her port. It stays in the whole week, Monday to Friday. I told her it was coming out today, and she is quite happy that is gone.
So, daddy, Brittney and Ethan are here for the weekend. Ethan is already bored. Brittney is already talking about nothing, and Emmett is touching and annoying me. Ahhhh...home sweet home came to me!!!!

Let's Order some T-Shirts.......

2011-03-29T14:01:00.001-05:00

Team Ivee Shirts
I know this is a lot of info, but I want to make this easy on everyone, including us. Thanks for your patience in reading how to order.

Here are sizes available and prices

Child Sizing: $11.00 Each

2-4 small

6-8 medium

10-12 large

14-16 extra large

Adult Sizing: $12.00 each

Generic sizing t-Shirts: small, medium, large, extra large

Adult Plus sizes: $13.00 each
2X, 3X, 4X

How to receive your shirt:
There are a few ways to get your shirt. Choose the best way, and then follow how to inform us in the "How to pay for your shirt".

If you live in the Mobile/Baldwin County area, You can pick your shirt up from me in Bay Minette, or I can mail it to you. (see below)
If you live in the Pensacola area, my sister, Sonia, would gladly let you pick your shirts up from her. Just make sure to follow information instructions in ordering.
If you live in the Memphis area, I'm sure you can catch up with me at St. Jude or i can mail it. Just email me or follow the instructions in ordering.
If you live anywhere else, we will mail it to you for the price of a flat rate box. I have listed the prices below (in the "How to pay for your shirt" section). It is based on how many shirts you need mailed to you. Read carefully to choose. .

How to pay for your shirt

We have found the easiest way to receive payment for the t-shirts is through paypal, an online financial payment/buying site. (Instructions are below) It is also the fastest way to place your order. I know some are not very technologically savvy, but the site is pretty easy. (If some still have problems using it, contact me via email and you can mail your order and a check or money order to my home)

When paying, don't forget to total you shirt quantity and prices. If we are mailing your shirt, you will need to include the price for shipping to you total. (example below in blue) The flat rate prices are listed below.

Flat Rate Box quantity and price:

1 t-shirt: Small flat rate box - Price $6.00
2 to 6 T-Shirts: Medium flat rate box - Price $11.00
7 to 12 T-shirts: Large flat rate box - Price $15.00

If you need an example on how to order:

So, for example if you order were:

2 Children's Shirts: 2 x $11 = $22.00

2 Adult Shirts: 2 x $12 = $24.00

1 Adult plus size: 1 x $13 = $13.00

Shipping: 5 shirts = $11.00

The Total would be = $70.00

So your total would be $70.00. This is the amount you would send via paypal.

(Then you would leave the details in the message box)

Instructions for Payment with Pay Pal

To Purchase your t-shirt through PayPal in 4 steps:

1. Click the link (Pay Now) below (or go to www.paypal.com)

2. Go to Send Money

3. Choose Buying Something and then follow the instructions, entering the email address

hopealations@hotmail.com as the recepient address.
4. Paypal will have you create an account, if you don't have one. Don't worry, this is a very secure site. I have used it a long time.

5. VERY IMPORTANT........Once you get to the check out screen, there will be a place for you to leave a message. You must give the following information:

Name
Your shirt size(s) and quantity
Email address
Phone number
List how you will receive your shirt: Mail or pick up
If mailing your shirts, you must include your mailing address.

After making your payment, please print out your receipt for safe keeping. If you are picking up your shirt, we will email you once your shirt has arrived. If it is being mailed, we will send an email to let you know it has been mailed.

T Shirt Cost

2011-03-28T21:37:00.001-05:00

Okay...so T Shirts are going to be the following. Sizes: children's and Adult's----Sizes: S, M, L, & XL = $12.00 -------Adult Plus sizes 2x, 3x, 4x = $13.00. I'm going to set up for the pay pal account for people to use some day soon. Checking shipping options.

T Shirt Orders in the near future

2011-03-26T13:39:00.000-05:00

We are almost ready to begin ordering T Shirts and I am so excited. They are finishing up the artwork to make the silk screens. The verdict is still out on the shirt color I am picking until I see the samples next weekend when Emmett comes up. I believe we have the prices, but they are not final. Em and I have talked about the cost, and we will be rounding the cost up a little, but I don't want to break anyone's wallet!!! The little extra made will go to help with the traveling expense for Em and the kids to come up to see us, and for the lack of having a kitchen here to cook in and having to eat out. (:
I can tell you that we will have children's size down to 2 T and Plus sizes up to 4x. I believe that I will be taking payments through PayPal, as this is the easiest way to do it, especially for those who live out of our area of the Eastern Shore. I also will be able to mail the t shirts to you by flat rate service from the USPS for just the cost of the flat box rate for those who can't pick them up from us. (So those needing it mailed will need to also include the shipping cost. I will let you know what the cost is based on how many you purchase and the box it will have to be mailed it.) I am not living at home right now though, so mailing will have to happen when Emmett or another volunteer can get to it.
So, stayed tuned. Ordering might begin this week....

After another crummy night in Memphis....

2011-03-24T10:35:00.000-05:00

She had another horrible night of sleep. She would wake up often screaming and talking jiberish, kicking and pulling the covers on and off. I've never seen her act like this in her sleep, outside the hospital the time she had the reaction to the vancomycin. The only thing that was different about what I've been doing for her is a cough syrup they perscribed. SO, she will not be getting that before bed tonight!!! And hopefully that will solve that issue, I pray.

Ivee's chest xray was compared to the last one they took (in 2008 mind you). She's always had some thickening of the lungs, but there is still a little room for concern, so we are starting her on an antibiotic today as well as some allergy medicine. With all the "new blooms" here and back home, even a typical healthy person could be dealing with all the allergy/pollen JUNK in the air. She has been sounding so awful. I've never heard her with a cough like this. Her lungs are crackly and she has a bit of a weez with the coughing.

Tomorrow they will do Ivee's film. It is like a dry run for radiation treatments, doing all that they would do for it, but without the radiation beam. It will make things more comfortable and ready to begin radiation on Monday.

We are trying to get her better quickly so that she will be ready to start the treatments and we won't have to be concerned about her lungs/breathing during sedation.

I had a pleasant surprise visit with a former student and son of some old friends. My former Pastor and co-worker, Phil Wilson's oldest son, Isaac, dropped in on us yesterday. It was great to visit with him and see what he is doing and pursuing here in Memphis while he is in college. He has an exciting future ahead, and I am looking forward to seeing what it holds for him. He also caught me up on what the rest of the family was up too. Looking forward to a visit from Phil when he comes to Memphis sometime. And even though I had seen Isaac since he was 13/14, it was nice to talk to someone that I had known and had some things in common with. We shared many a dinner theatre experience those many years in Spanish Fort.

On another note, it is kinda lonely here in Memphis right now. I haven't really had anytime to meet the families here, doesn't help that Ivee isn't feeling well. The last thing the chemo kids here need around them is a sick person. It is difficult to get around with Ivee, especially in the cafeteria, since she can't walk. She isn't back up to speed with using her walker and she doesn't feel well anyway. I have only been out of the room for hospital visits and for dinner at night. Plus, I find it difficult to strike up conversations with people, especially when you don't know where they are in their fight. Some families here want to be left alone, and some are struggling just to keep it together. So, I find that I don't want to "intrude" on others. I, as usual, will just wait until the time feels right or God prompts me to speak to someone. Plus, I don't have it in me to just strike up a conversation with anyone, I'm not good with small talk unless it's with a small person...kids that is. They will talk to you about anything if you are willing to listen to them.

Okay, so that's enough whining from me. I'm going to go attend the 4 year old.

Not all is well from the Land of the glass pyramid....

2011-03-23T12:00:00.000-05:00

Ivee has been struggling with some congestion last week. Yesterday, she had some moments when waking up, but last night before bed, she just had a huge coughing fit. Then at 3 a.m. this morning, she just couldn't get any relief and she had a fever. I have salined, neubulizered, and cough syruped her. Today, we will get a chest xray, and continue to try to help her. She just sounds awful. She has never had trouble like this before. She wants to actually leave the room today, and this is the day she needs to stay in.
Praying we can get her relief before Friday when she needs to be sedated for a scan.

2011-03-21T14:35:00.001-05:00

Normally I wouldn't just post our address for mailing, but I know many of you would like to send cards, letters, or stickers to Ivee while we are in Memphis. So, here is our snail-mail address....

Ronald McDonald House
Hope or Ivee Foley
Room #33
535 Alabama avenue
Memphis, TN 38105

Home Sweet Home in Memphis

2011-03-20T21:26:00.002-05:00

Made it to the RMH in Memphis about 5:45 p.m. Ivee is fast asleep in her big girl full size bed. She wanted the "other" bed, but mommy put her in the bed I want her in after she feel asleep. (It can be pushed against the wall!) I have unpacked and put everything away. Now, to just begin our normalcy here. Oh, and the RMH has repainted since I was here 4 years ago. My room is Bright Lime Green (if anyone saw Britt's orig. room, you know what I mean) Boy, I'm going to be nauseated every morning :) For my friends and family, I have a phone number and snail-mail address. Message me if you want them. Also, I have video call on Skype, so if you want a video call sometime, friend me.

T Shirt designs...

2011-03-17T20:48:00.000-05:00

Well, we are working on the design still, cause Em and I can't agree on the front. We have the back done...we think. What are your thoughts on it?

As for the Front, we are at odds. Soooo for those interested in purchasing one, let me know your thoughts on which of the following you would like for the front. Take a vote and let me know. Whatever is chosen will go on the left side pocket area.

Concept A: Above picture

Concept B: Picture to the left

Concept C: Picture to the right

Radiation Postponed

2011-03-17T05:43:00.001-05:00

I recieved an email from our RO nurse yesterday. She informed me that Ivee's radiation plan will need some more work, so she will not begin radiation on Monday. I have decided, however, to go ahead and move up on Sunday anyhow. Hopefully, once her plan is in place, we will be able to begin asap if we are already there.
I am in the process of trying to get life here at home taken care of. There is still so much to do on my "to do" list, and I don't even have packing for being gone almost 2 months on there.
I hope to complete the shirt design for our "Team Ivee" shirts sometime this week before I leave so that I can get together with the silk screen/t shirt company. I hope everyone likes what we come up with. For me, I like to be creative, and I want the shirt to have some Ivee flare, but I am trying to make it gender friendly. (This does make me kinda sad, cause my baby is so girly. She would love a "pretty" shirt!!!)
Continue to lift us and others up in prayer. Sooooo many kids out there still fighting the fight. And many don't ask for it, but continue to pray for the neurosurgeons, hemo oncologist, and radiation oncologist that treat these babies. They are the ones whom God uses to continue the fight and give hope to many. These people chose to go to school, to use their skills to help others fight for their lives! They are still trying to make improvements, not only in defeating cancer, but in tying to help these deveolping children sustain a better quality of life!
God bless!
Love Hope
Mother of Ivee the Blessed
Jeremish 17:14
"Heal me, O Lord, and I will be Healed
Save me and I will be saved
For you are the one I praise"

Update on....Life

2011-03-12T21:43:00.001-06:00

Sorry I haven't posted, but it's for different reasons. 1. My phone is not the easiest thing to update on. 2. Didn't have my PC with me. 3. I haven't felt like it and unfortunately, I don't feel like it right now. I'm already pretty tired and we still have to set the clocks forward tonight...grrrhhh!!
We made it home Friday after being back in Memphis since Tuesday. Thanks to Ninfa Moore for going with me and to Tony Moore for letting her go! Ivee was not happy about being back on the road again. We had to stop often on our trip up. She finally gave it up for a nap about an hour away from St. Jude.
Her first appointment on Wednesday was labs, and we couldn't get her port to work. So, we had to fill it with TPA to break up the clot in it, you have to wait an hour for it to work. We were finally able to get it to flush and pull her lab work out. We meet with Dr. Merchant. He once again went over the short term and long term side effects of radiation. Then the dangers of radiation, especially the complete dangers of 2nd time radiation. He stated that so far they have been "lucky" in this, as they have never really seen the severe side effects of 2nd time radiation, but it will one day be inevitable. (I personally don't believe in Luck. I believe in the protective power of my Creator, Healer and Provider. And don't think for one minute that I don't think God uses that man or his abilities and the abilities of others to help our children). I remember Ivee's side effects from the 1st time radiation. She was so tired, her poops were awful and smelt sooo bad. She has scarring from it, and it will probably scar again. There can be effects on growth (which Ivee has to see an endocrinologist when this is done) and there can be balance and developmental delays...among other things.
When it came time for her CT Radiation Simulation, they were 2 hours behind. Luckily, once we got back there they knocked her out quickly. That is great because she was highly upset to go back under. I promised her she wouldn't wake up with another cut or tube down her throat. I can honestly say....I NEVER lie to her. I always tell her what is going to happen. I will never let her say you lied to me or I don't trust you. I started that when Brittney was little and had to go to the dentist. They, the dentist, didn't like the fact that I told "MY" child she would have to have a few little shots in her mouth. We'll...too bad for them...they are my kids and I will tell them what I want, when I want, and I don't sugar coat stuff. NOW, I also don't make it all drama either. (Okay, I'll back off the subject....sorry for the rant)
Thursday was MRI day. She was better for this, but that is because Dr. B (anesthesiologist) is so awesome with those kids!!!
That after noon, Dr. Boop (n-surgeon) told us the MRI looked good. Looks like there is no damage or injury from the surgery. Just some pooling of brain fluid on the top part of the brain. No concern, though, should be absorbed. The infection on her neck is superficial and hopefully should be good to go within a week. Can't really radiate that area if it's still, well, puss filled. Sorry for those with weak constitutions!
Did see Dr. Merchant before we left the hospital that night. (He was working late, and actually had his phone out dialing my number as I walked around the corner of the cafeteria.) He confirmed the MRI results and said that they would call me this week. He just had to finish his part that night for her to start radiation on the 21st.
Sooooo......Em, Ivee and I will drive up on the 20th and get settled in for the 6 week stretch. Em will drive home the next day (renting a car).
Continue to pray for us. Just so much going on in my mind right now. Trying to focus. Alot to get prepped this week for my term of leave from home and family. Take care and thanks for being such a great support group for us!!!!

T Shirts

2011-03-06T20:09:00.001-06:00

I need to know who might be interested in purchasing a Team Ivee: Fighting Cancer shirt? I wouldn't be selling for profit. It there were any proceeds they would go to Children's Cancer research. Let me know on here or FB. I need to get an idea before I talk to the company that would make them.

Really....Do I need to drive again...

2011-03-06T19:37:00.000-06:00

Yeah...so as you can see from my "heading" I'm not too thrilled to be taking another long drive up to Memphis this soon, but so is the life of a St. Jude Cancer patient's mom. You know, I was so excited when last year we hit the only going every 6 months marker for check ups. It doesn't feel like you just got home to have to turn around and drive right back up. But driving up 4 times in less than two months...now that is al ot of driving. Makes those every 12 weeks visits not so bad. They will fly you up there, which is faster, but with all of Ivee's medical equipment and her constant head congestion, we just aren't ready to try flying yet. I wouldn't fly right now anyhow, not so soon after resection and the infection on the lower half of her suture. Which, by the way, it is looking better...finally.
I believe we are all coming to grips with mom and Ivee leaving soon. I keep running through my head what all I need to show and tell Emmett. He doesn't know much of our daily routine, so it will be interesting and probably a little trying for him and the kids to adapt to one another. They will be fine, though. Things just won't be where I normally put them, and I will be searching for stuff when I move back home.
Ivee will miss them all. She already ask everyday weekday where they all are. She knows they are at work and school, but she enjoys when they come home. She is missing going to school as well. Hopefully we can make some of the last weeks of school in May.
I've been trying to decide what all I need to take with me when we move up this time. From previous experience, I recall coming home with a lot more than we took with us. We were lucky that all of our stuff fit in the van that time. I packed it just so that I could get the 3 kids in the car. It was interesting. The weather in Memphis should be much more pleasant to live in than last time. We are looking at Spring weather instead of July/August weather, which was in a word...miserably-hot!!! I thought LA was hot, but at least we have a breeze here. It was a beat-down-on-you-no-relief-in-the-shade heat that summer of '07.
We do leave this Tuesday for Radiation Mapping and MRI scans. Hopefully will be home Thursday. We'll then have another week home before going up for the radiation dosing. Ivee should be well enough to go to church and other places by this next weekend. We are going to have to find some time to make it to the movies before I go. So many films were released since our hospital stay, and we wanted to see too many of them. It never seems to fail. You don't see anything good at the movies for months, then all of a sudden everything that comes out looks so good!!! We did get to see one movie yesterday. Ivee was feeling great, and our oldest, Brittney who is the best big sister and babysitter in the world, said she was comfortable watching her for a few hours. She is wonderful with Ivee, Ivee adores her, and the medical stuff doesn't scare her in the least. I showed her how to use the feeding pump one time and she has it down! The kids are wanting to see a new movie that came out as well, but Ivee won't be up for watching it. Guess we'll have to find another babysitter for a night so we can take the oldest two out.
Well, I suppose that is all the news for now. Pray for safe travels, and easy procedures this week. God bless!!!!

2011-03-03T10:58:00.002-06:00

Today I am feeling the weight of what is to come. Ivee is a fighter, but putting her body through another round of radiation seems just so unfair. She did amazingly well during the treatments (especially in comparison to chemotherapy), but radiation is just like poisoning the body as well. You just don't poison the entire body. Her little head is already so full of scar tissue thanks to multiple surgeries and 1st time radiation. Here we are, once again, having to damage her brain, tissue, veins, brain stem, all because of this disease of cancer. She already has so much she has overcome, but still has so much to still overcome. God I am asking that your protect my babies head, brain, veins, tissue and brain stem from the devastating effects of this treatment. That you restore her body to health, and that you rid her once and for all of this disease! I Jesus Name!!
....Jesus told them. "I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." (Matthew 17:20

News about the News in 5

2011-03-02T19:35:00.000-06:00

1. Ivee is doing well. She has crawled today, played with my friend Cathy while I went to the grocery store, has begun to talk a little louder and a whole lot more, and she used her walker tonight. She just came walking down the hallway to the kitchen, surprising and scaring her mother all at the same time.

2. Her neck "wound" (which I will not share the gross details of) is beginning to look better. Still redish in the skin around the suture and "other stuff" but it is not getting worse. We will continue to clean it as we have been and let it air dry.

3. I heard from Make-A-Wish today. We have only been trying to get together on this interview since the end of December, and YES it is March. We were all finally able to meet next Thursday, March 10th...UNTIL....

4. Christy, Dr. Merchant's nurse from St. Jude called. Dr. M wants us back up there next week. Sooo....once again, I can't meet with Make-a-wish which means I can never make this kids wish happen!!!! (Done Venting)

5. This means that next Tuesday I will once again leave for Memphis. We will do her radiation mapping/planing scan on Wednesday and her MRI on Thursday, then come home. He will give us a week at home, and then Ivee and I will be moving up the weekend of the 20th, I assume (date wise). This means that she and I will be in Memphis during the kids Spring Break and Easter. Guess their coming to see momma and Ivee for that week. This would have Ivee and I moving home the first part of May.

WHERE HAVE THE FIRST 2 MONTHS OF 2011 GONE??!!?!?!?! Seriously, It's March? I guess time flies when your world goes into a "loopty-loo" again! Now, if only the time in Memphis will go that fast. At least I know what to expect this time, and I am looking forward to being able to minister to families who may be going through this for the first time. I'm actually a PRO at this now....how sad : (

So, as you continue to pray, and thank you for your continued prayers and just your thoughts of us throughout the day....Pray that we can finally meet with Make-a-wish and get that rolling for Ivee. Pray for our trips to Memphis and our time apart from family. Pray for us financially. BUT our BIGGEST prayer....PRAY FOR NO SIDE EFFECTS FROM A SECOND DOSE OF RADIATION!!!! This is a huge consequence of 2nd time dosing.

God bless you all and thanks for putting up with me.

First day home...

2011-02-28T16:54:00.000-06:00

Ivee has had a pretty good day here at home. She is still pretty congested, but her cough continues to get a little stronger day by day. She has tried to talk more today, but her voice is still very weak. She has played Candy Land with momma and brother, Ethan. She has watched TV and she slept in until 9:00 a.m. this morning. Emmett said she didn't move all night. She was still in the same position she went to sleep in last night. I have worked with her on doing some crawling, standing and push-ups today. Home health brought her feeding pump and suction machine. The suction machine doesn't "suck" very well though. I might have to call them about that. It worked well while the guy was here but the moment he left I couldn't get the machine to give me much power.
Now we wait at home, healing and getting stronger, and await a phone call from St. Jude. Not sure when they will want us to move up. Ethan didn't realized Ivee and I would be moving. I think that perhaps we had forgotten to mention it to him. Just so much going on. He wants to go with us. When I asked why he said, "I won't have to deal with the kids on the bus and I can make sure Ivee stays safe." I think it is more the getting out of school part than the keeping Ivee safe part. That, and I do believe he will miss us. He already wants to know when they will come visit. This will just be another one of those times in our lives where we will all just have to try hard, learn to live without each other, and remember why family is so important. It's hard on everyone when life is not the same as when momma's home, laundry's done, dishes are cleaned, mom reminds you to feed the animals, mom takes care of the doctor's appointments, homework and all that stuff. Now daddy will have to be there at night to make sure everyone's fed, does schoolwork, and goes to buy groceries. BUT we will all make it. Just another bump in the very bumpy road we've been on...or maybe it's just a pot hole!!!
I'll keep everyone informed when I know more about Memphis, and I'll update on Ivee's progress.

From Home...

2011-02-28T12:45:00.001-06:00

Can't say much, baby's waiting on me to play with her. Home, healing and still struggling with coughing, talking and breathing. Keep praying.

Day 10 at Le Bonheur

2011-02-26T11:53:00.001-06:00

Yesterday, Ivee finally got out of her room. This lifted her spirits SOOOO much! She finally began to communicate with us again, and there was exchanging of hugs and sugar!!! We went to the cafeteria and gift shop, where she got a black doggie and a "Melissa and Doug" dress-up-doll set. (Melissa and Doug is a great company that makes wonderful toys. They are the best PT and OT toys you can find!)
So, she and mommy played dolls while daddy went to minister to a family that's 4 year old baby girl was in surgery for multiple tumors to be removed from her brain and spine. (She, the little girl, is doing tremendously well, and only a day after resection is getting out of ICU, talking and moving. What a blessing) We know what it is like to be flung into this new world of tumors and cancer. We have meet a few families here dealing with tumors and seizures, and between us and our friends situations, I hope we've given some hope and encouragement to these families just walking into this "new" life of theirs.
Ivee has been blowing bubbles to strengthen her lungs (which she loves) as well as getting albuterol and Chest PT treatments. She looks better, but she has very thick secretions. They are very difficult for her to cough up. Her vocal chord is still very tired. She still can't talk above a very, very soft whisper. We, Em and I, are trying to do all we can to get them out. We are using saline up the nose, and suctioning the mouth. We let respiratory use a deep suction up the nose and down the throat today just to get some out. You can here the rattle in her throat everytime she breaths. We've been able to take her off the oxygen for a few hours here and there, and if she had less secretions and a strong vocal chord and cough, we wouldn't even be here!!!
As for post-op side effects. Em and I have noticed some right face/eye drooping, but anyone else who didn't know her wouldn't notice. Dr. Boop has assured us that the nerve is working, it just may take a while for it to fully heal. She has a quivering in her lower lip/chin. It looks like nerve bruising, and hopefully this will heal as well. She drools constantly, and I'm not sure she can feel it or she would wipe it away herself.
She is amazing me with the way she is doing, though. She got out with her walker yesterday for PT and walked about 20 to 25 feet down the hallway. She moves her head without any hesitation. She wants to help do things. They come in to take her blood pressure and temp and she tells them where to put it and lifts her arm for them immediately. We are praying that the depression is over, and we think that it possibly is. The leaving the room and getting around has just made this more bearable...for all of us.
I believe they will release her on Monday and that we will possibly go home with Oxygen, a feeding pump, and possibly a suction machine. Nothing new for us, it's just been 4 years since we had to suction at home and use a feeding pump.
On a last note, she had seeping on the bottom of her suture, they keep it clean and put her on a small antibiotic for it. No concern that it will cause infection to the brain and interfere with the shunt.
So, if you are still praying, and I know many of you are...to be specific:
#1. Pray that the congestion GOES AWAY!!!! Then we can go off the oxygen and not have to take it home.
#2. Pray for the ticks and drooping to heal (nerves)
#3. Pray that perhaps we can go home tomorrow, and that our car ride home with be uneventful.

2011-02-24T17:35:00.002-06:00

Well, we had lowered her oxygen a good bit, but then we just thought she was getting tired because her stats began to drop again. So, we had to up the oxygen again. We didn't have to go all the way back up, but we did have to go up more than we would have liked too. We are now doing albuterol treatments, and continuing with chest PT. We put a pressurized mask on her and make her work to breathe out. This helps to "inflate" her right lung. She does really well with the treatment, but it is really hard work.

She is now IV free, which is good, but she is in such a slump it wasn't that big a deal to her. When the nose vent comes off, and she can get out in a wagon, stroller, or anything, she will be in a better place... we hope. I believe we will be going home with a feeding pump, and if it comes down to it, we may be going home on oxygen. Just don't know at this point what it may come down to.

We have tried all we can in the room to raise her spirits, but there just doesn't seem to be anything. I did manage last night and this morning to get her to "dance" a little in her bed. It consisted of moving her arms and head. Maybe I can try again and see what happens. She is moving her neck really well and very nicely.

Someone from Habitat for Hope is bringing us a meal tonight. He said he knows a good country cooking place, so I pray it is GOOD stuff!!!

She is snuggly next to daddy right now watching TV. Praying she gets a good nights rest and that the breathing treatments continue to move us forward...quickly!

Some pics from the last few days

2011-02-23T19:23:00.000-06:00

Here she is the day after surgery

This is the white board in her ICU room. Momma and Brittney decorated Ivee style.

Today she got a bath and dressed like the Princess that she is.

We just took her hair down for bedtime. It was very Tim Burton!!!

A Slightly Better Outlook

2011-02-23T09:09:00.001-06:00

Well, she is talking to us this morning. Last night she wouldn't look at us, talk to us, answer our questions or even let us touch her. She would just lay there staring into space. Had us worried for so many reasons. This morning she let me lay with her and put her feet on me. (She loves to put her feet on her me and her sister) She still isn't herself, but she is at least responsive. I brought her Cinderella dress, so I told her after a bath, mommy will dress her up like the princess that she is!

They did a chest x ray last night. No fluid, but the right lung is showing hazziness, which means that it is a little collapsed in the lower part. We are doing a pressure treatment that inflates the lung and makes it work harder. Her stats (O2) were good last night. They never got below 92. So the treatment from last night helped. She has a strong cough today, but she is still very junky. We will begin the lower the pressure on the O2 again today. She hasn't had a bowel movement since last Thursday, so I have asked for a softener for two days. Actually going to get it today (even if I have to go find it) and help her out with the constipation, which is quite common for Ivee after sedation. It is very difficult for her to get going again. She is still on a steroid for inflammation at this time and zantac to counter act the side effects of the steroid. She is only puffy/swollen in her face. But for those who know her, you know she has fat cheeks anyway.

I'll keep you updated as the day progresses.

In a room...but not all is well...

2011-02-22T19:42:00.002-06:00

Yeah...so we're in a room and we're pretty sure this kid is pissed off at us. There are no nice words for it. She just get's in a hospital funk, and you can't do much to get her out of it. About an hour ago, while my back was turned for a moment, she grabbed all the chords and just started pulling them. I turned around and they were all on her, and she had pulled the oxygen from her nose, taking the chords in her hands and flinging them about. Just going crazy. I can't blame her. It was her way of just releasing some tension!! We still can't lower her oxygen right now. Her right lung is not working at full capacity. We will have to do Chest PT tonight. That is where they beat on her chest or back to help the lung to work, and it helps to loosen secretions. They won't do this at night, but 3 times a day. Her voice is still not truly back. She is coughing a little stronger. I don't think we will be going home anytime soon. Em will be staying with us instead of going back to work. We are both concerned for her mental and phsical well being. She doesn't quite say or do the things she did before, so we are hoping that it is just the swelling on her brain and the fact that she is just so tired.

They will probably take a chest xray tonight to confirm her lung status. She tested negative for flu and rsv.

On another note all together. Some family and friends came by today. My Uncle Paul and Aunt Cindy surprised us with a drive thru visit. Our friend, Mike Burger, was in town for business and treated us to dinner. A new Memphis Friend, Mark Horrocks, brought us CORKYS!!!! for lunch. He has a non-profit housing and charity here to help families just like ours during this time of need. He gave us some ideas for ministry to take home. Em and I have some ideas to think over, and some things that others can assist with.

So, we are tired, she wants to come home, but she has to get better. Please pray that we can get her lungs working. We don't want to go back to ICU. Pray that she finds her happy place and that she will realize that her mommy and daddy do love her. We appreciate you guys lifting us up in prayer.

Morning 5 at Le Bonheur and all is going better...

2011-02-21T08:11:00.001-06:00

Will still be in ICU for the day (at least) O2 is getting better but still far off from being allowed to go to the floor. We have begun to wean her from the oxygen feed. Is was at 60% and now she's on 40%. Soon we'll begin to lower the flow (pressure) into her nose. We began to slowly feed her yesterday a few mls an hour. She is up to almost 2 ounces an hour on the pediasure, so her strength should continue to increase.

She is beginning to speak just slightly, not quite a wisper. She's keeps saying, I want to go! Don't we all. Em and I both held her for a long time yesterday. She has been sleeping really well. Doesn't need as much suctioning as before. She is trying to sit up in bed on her own, but too weak. She is moving her head really well!

On the "IVee" side of things... She fake yawned with her hand last night to say she's tired, and this morning she told me to get out of her way cause I was blocking the tv. The night nurse said she kept blowing her kisses out the window last night. She told me to lay down in the crib with her this morning (thank goodness I can fit in there with her and that she didn't ask daddy). She wants to draw, but can't hold the pen well. She is becoming the independent Ivee we all know and love, and neurologically she is doing great!!!!

Thank you to all of our friends for your continued support. We love you guys and love hearing from you!!

*Many have asked to be tagged in a note to make sure other friends that aren't my friends see it, and then others of you just wanted to be updated. If I remember I will continue to tag you! ;)

After surgery, looking bright...

2011-02-20T12:08:00.002-06:00

Around 10 last night, they extibated her. She is doing well, but is struggling to breathe due to the very thick secretions. She is on a pressurized oxygen tube, and 60% oxygen. We have to suction her ever so often. She can't speak, yet, can hear her make some sounds, but mainly when crying. I have learned to read her lips to try to understand what she wants. She asked for Brittney, big sister, often last night and this morning. So, she was very pleased when she came in this morning. She's asked to draw, but can't hold the pen. She just puts it i her hand and goes to sleep. She tries to sit up on her own. She just told us a moment ago she wants to go swimming. She mouthed it, but made the arm motions like she was doing a stroke in the water.
Dr. Boop wants to keep her over night again in the ICU. This, 48 hours, is the time when the swelling of the brain is at it worst. She needs to be more stable in breathing, so in the ICU we will stay another night. We will see how it goes. MRI after-scan was clear with no signs of tumor left behind. He was concerned that her vision, right side of face, and hearing may be affected, but there have been no visible signs of deficit. Her eyes are straight and her face seems proportional.
I don't believe we'll be going home when the nurse orginally anticipated (perhaps she didn't know the extent of the procedure.) Hopefully we'll go home by Wednesday, cause dad has to go to work at the end of the week.
Continue prayers, and thank you for all of your words of encouragement and support.
love,
The Foley's

Surgery is over and she is doing well.

2011-02-18T16:21:00.000-06:00

She is finally rested, and sleeping in ICU. Dr. Boop believes he got it all. He said it was on the nerve that controls the right eye, and underneath the nerves that control right side facial movement and hearing. So these things might be affected. She was suppose to stay sedated, but then Tracy, the NP, came by the room and said that Dr. Boop called from the ICU saying, "He just called me, and is very pleased. She is in the bed wide awake looking around." We thought she was suppose to be sedated. Well, she was. They couldn't get the dose to knock her back out. You could tell she was ANGRY! Wanted mommy and daddy to take her out of this joint!!! The good news, her right eye was straight and NOT turned in!!!! They have had a hard time keeping her sedated. They had a horrible time the last hour keeping her sedated. I stayed back there trying to calm her down. She has a huge tolerance for these meds. Finally had to give her a dose that would've knocked momma out for 3 days. The MRI is scheduled for 7:30 a.m. in the morning and if all is well (no signs of tumor left behind) they will take out the breathing tube and start getting her aware and hopefully pain free. And hopefully, she will go back the floor. Daddy is going to stay with her tonight in the ICU. He doesn't want to leave her alone. I am going to go with my dad and Brittney to get something that is not hospital food soon. I'm going to sleep at the Grizzly house tonight to actually get some rest. I'll be in the room tomorrow night.

We should know by tomorrow night if we are looking at any real complications, but so far the fighting and eye are a Great sign!!!!

In the hospital...

2011-02-17T17:43:00.002-06:00

We are settling in here on the 7th floor of Le Bonheur Hospital. The MRI didn't happen today. They are going to do it in the morning right before the surgery. Dr. Boop, Surgeon, just came in. We had a good talk. He said he is really going to take his time tomorrow, and that he wants to get ALL of it. The plan is to keep her sedated and intubated afterwards for a little while in ICU.After that, we'll wake her up and see if we are dealing with any side effects from the surgery. (ie. stroke, paralisis, facial weakness and the like). Then on Saturday we'll have another MRI to make sure he got it all! If not, he would go back in, because with her cancer, you must get it all to get the best possible outcome. Keep on praying and thank you for being there for us!!!

On the road again...

2011-02-16T05:11:00.001-06:00

I could definitely wait to get on the road again!!!
Praying for safe travels, good visits, great mapping scans, and then a problem free, get it all, tumor resection on Friday!!! My God is greater, my God is stronger, my God is higher than any other. My God is healer, awesome in power!!!

Ivee was "lapping" it up in the front of the camera

2011-02-11T07:57:00.000-06:00

Click here for Ivee's News Story

Ivee ate up the camera and water last night at her swim at the local Wellness Center. Thanks Pat, JJ, Margo, and Romie for making this happen. It was a great night, and she had a WONDERFUL swim.
On a side note, mom has realized just how southern my accent has become!

Today's the Day...the Sun is shining...the pool is clean....

2011-02-10T07:37:00.000-06:00

I finally get to keep my promise to Ivee and take her swimming tonight. I has turned into something bigger than I expected with reporters, a private time as a family, food and more. I just wanted to keep a promise to her, but the more you can spread the word about childhood cancer and the affect it has on these children's lives...the better!!!! More media means more donations for research, I pray!!!

Yesterday was a great day! My sister, Sonia, and brother-in-law,Chris, welcomed my nephew Nathan Tyler Baughman into this world. My sister is a champ! No drugs or epidural, and the little man was trying to come out head and arm together! She was awesome and Chris was a GREAT coach for her!! Nathan was 7 lbs 7 ounces and 20 inches long. You just forget how tiny these things are!!!! It was so nice to get our minds on this happy time and forget about Ivee's upcoming surgery for the day! Can't wait to see him Sunday, bathed and clean!

Tall doctor with an accent said WHAT?

2011-02-08T12:01:00.003-06:00

I am a little more than frustrated. Some doctors just grate on my nerves. Went to the GI doctor, after having talked to the surgeon about her stomach last week. He said he would Email the GI and they would come up with a plan to treat this medically. When the GI doctor came in, he had to read all over the notes trying to find out what was going on. I'm thinking to myself, "Shouldn't you have read over this before you came in the room?" Then as he begins to talk, I have to fill in the blanks with what the surgeon said. Then I have to "remind" him of what we discussed last visit. He then preceeds to draw diagrams of stuff, not really knowing how to explain it. I already knew what he was talking about, so we could've skipped this part. Then he tells me of a medicine we can try for her stomach, that is a antihistamine, but blocks the sensitivity of the fundus (a part of the stomach). Or maybe we could try giving her feeds at night, which is something he didn't want to do last time. (That is when I asked if it would be better for her). Sooo...now I get to decide what we should do. Really?!?!! Me? I have a medical degree now? Well, by now I probably could ace certain parts of their testing!!! So, I don't really know what to do. I'm going to think about it. Since brain surgery is coming in less than two weeks, I'm going to try to not fret about it. It can just be so frustrating. You like one doctor (surgeon) and then think that when you get in to the GI doctor something, some kind of game plan would be ready to go. I can't stand an "unprepared" doctor. Yeah, I know your busy, but the Contrast Dye was done more than 2 weeks ago. You can't take 5 minutes to read a report and make a decision the week before you see the patient. And his HANDWRITING!!!! I won't even go there. I know it may be rude, because he is writing notes for me to take home, but as he talks I take my own notes. I just can't read that chicken scratch.
That is it with the venting. I just feel the tension building in my neck. I've got enough anxiety right now, that this visit just didn't help. I am trying to not let to much of my stress out, but sometimes I think I can just imagine my head opening up and my brain screaming. I can feel it welling up behind my forehead.
Sorry...I'm done.
Keep praying and bless you all.
Hope m/o Ivee the blessed.

Surgery details...

2011-02-04T09:13:00.002-06:00

Surgery is scheduled for Friday, February 18th at Le Bonheur hospital in Memphis, under the skillful hands of Dr. Fredrick Boop. I have only heard good things about him, and he has performed many, many surgeries on many tumors, including Ivee's. He knows the importance of getting every bit of it out of her head.
I will be heading up early to get her preadmitted on Thursday so that they can make a 3D image of her head doing a stealth craniotomy. This is the best way for the doctor to decide the best course of action during the procedure.
We are asking for prayers for discernment, steady hands, a watchful eye, and fatigue for the medical team. We are already thanking God for a smaller mass to deal with this time, and praying for NO side effects from the procedure. The Great and Ultimate Physician can do all things.

*On a side note, God has provided a pool for us to finally take Ivee swimming in. She only waited 3 months for her mom to get her act together. I don't feel so guilty now. Thank you Pat, JJ and those in Bay Minette and the wellness center that are making this happen.

Hernia update

2011-02-02T15:57:00.000-06:00

We meet the new Pediatric Surgeon for USA, Dr. Daniel Beals, and must say I liked him. He reviewed Ivee's scans from her contrast dye GI series. He has concluded that she doesn't have a typical hernia, but one where the top portion of the fundoplication has entered the chest cavity. So, in other words, we are not looking at anything threatening at this time. However, he did note that she is dealing with gastric dismotility/gastroparesis. This is where the stomach doesn't want to "move" it's contents. So we may be looking at 2 instances. 1. The heaving may be caused from the hernia. He wants to try approaching the problem medically at first, perhaps putting her on a medicine to promote movement in the stomach. OR 2. The hernia may have been caused by the heaving. Which could still be the gastroparesis, or we are looking at something neurological.
So, in less words...No hernia surgery for now, going to treat medically and just worry about the reoccurance and radiation for now. We will see the GI doctor on Tuesday, who should have talked to surgeon all about this by then.
Thanks for the prayers!!!

Separation and Anxiety

2011-01-30T20:37:00.000-06:00

Yeah, so I have to admit. I have separation anxiety from her already. No, I'm not worried that something will happen to her. I'm not worried that she'll get sick or have headaches. I'm worried that I'll miss her doing something cute, funny and whitty, and that I didn't get it on film!
But, I'm going to suck it up and let her go to school tomorrow. She loves school and soon she will be missing too much of it.
Em and I are still learning to handle the news. I do okay most of the time, especially when I am with my friends and family. It's those "quiet" moments that my mind begins to get away from where it should be focused. Luckily, I have some of the best friends in the world. They give up their time to go to breakfast with me, go shoe shopping and sit in the car while Ivee watches an hours worth of the most annoying musical in the world playing in the back ground. Thanks Ange and Cathy for keeping me occupied today.
So, trying to get back to the norm around here. It isn't too hard to remember where you are when the 14 and 11 year old are still constantly bickering. Luckily, they DO go to school everyday.
Unluckily for me, laundry, though clean, is piled up on the couch, and suitcases still need to be emptied. So, that will be my morning tomorrow.
Tuesday, Ivee will be seeing her new pediatrician. This woman is going to "love" us when she's done with my Ivee life history lesson for her. If she never had a child with an extensive life history, she will now!!!
Wednesday we visit the general surgeon to discuss the hernia. In the words I use so often, when talking of doctors who we've never seen....He won't like me!!! Most doctors don't....and I'm okay with that. They just aren't used to a parent who understands their big words and probably could teach them a few new ones. (some of you know what I mean!)
So, that's my shout out for now. Keep praying!!!
Love, Hope m/o Ivee the blessed.

What is coming.....

2011-01-28T12:16:00.000-06:00

I will try to make all these details short and to the point as to not bore you or keep you from more important things.
Ivee has a reoccurance in the same area as her primary tumor. Dr. Merchant was shocked to see it in these scans. It has only been 6 months since the last MRI, so we are not sure if this mass began growing right after the MRI or just recently. After reviewing most of our options, Em and I have come to the decision to go for total resection of the new growth followed by radiation. If a 100% total resection cannot be accomplished, we will discuss other options. There is a new study being "run" right now for trying a chemotherapy for 6 months on a reoccurance, but it is a small study, and Em and I don't want to poison Ivee's body without more evidence and results of side effects. Anyone who has ever had a child go through chemotherapy knows how difficult and horrible it is, and Ivee always seems to get the side effects of drugs.
The history of her cancer shows that a 2nd dose of radiation is the most effective to treat the tumor area.
Her Spine MRI came back clear with no signs of metastatic disease.
We will meet with the surgeon in Mobile on Wednesday to discuss the fundoplication hernia. Unless it is life threatening, we will postpone any surgery to fix that, and probably have it taken care of in Memphis.
Thursday I will discuss surgery dates with the nuerosurgeons assistant and set up the tumor removal date. It will probably be done 2 to 3 weeks from now in Memphis by Dr. Boop, who is way too familiar with this cancer. He says it will not be an easy surgery, but he believes he can get it all. If he does get all the tumor, we will return home for a few weeks of healing. After that time, Ivee and I will move to Memphis to begin radiation treatments.
This is like starting over, except this time is a bit easier. We've been here before, we've made it through this. We're dealing with a smaller tumor, and hopefully none of the side effects of the first.
So, besides the obvious ways to pray for us, pray for Ethan and Britt. That we can make the best decision concerning them, our home and schooling.
As I know more I will keep you updated.
Love, Prayers, and Thanks
Hope m/o Ivee the blessed.

ivees tumor has returned. we are staying for more test.

2011-01-24T20:01:00.002-06:00

One small step for man....

2011-01-19T08:34:00.001-06:00

Ivee took 3 very small steps by herself last night, and then 2 small steps at school this morning. Mommy and daddy are so excited. Her balance is getting better. Her muscle control and strength is improving. She is so hesitant, but at this rate, she might be able to do a little walking by her birthday?!?! Not going to say it and claim it, but it is looking promising.

Contrast Dye study

2011-01-18T06:58:00.001-06:00

Friday Ivee had a contrast dye GI series done through her g button. When the dye entered the stomach, within 5 seconds you could see it begin to enter the small intestine. In less than a minute, you could see a clear definition of the small intestine. So, in conclusion...she empties EXTREMELY fast. The feeds don't stay in her stomach. The good news is no reflux was visible. The bad news...I don't know. What does the emptying mean for her? I don't know either. This does explain the huge increase in heartrate with her feeds. We don't see the gastro doc again until Feb 8, so will continue doing what we are doing. I'm not sure he'll address this emptying. I am concerned for the future though. What if she does begin to eat by mouth? What does this emptying mean for solid foods that are suppose to be broken down in the stomach? We all know digestion begins in the mouth, but I am unsure of any answers and honestly don't know if the doctor will have any. I'm also a bit concerned that her body is not absorbing the correct amount of nutrition. Many explain her small stature to the chemo, radiation, etc. But it seems that it might be affected.
Well, that is all I have right now on this subject. Less than a week until scan day! Keep praying.

GI doctor update

2011-01-12T12:47:00.000-06:00

Learned somethings from Ivee's gastroenterologist visit yesterday. Will begin to address her gagging and increased heart rate during feeding times by changing the way and how much we feed her. Friday we will take her for a contrast dye study through her g button. We want to find out where the feeds go, as in reflux as well, and how quickly that her stomach empties. All issues are do to the nissen fundoplication pyloroplasty she had 4 years ago. For those unfamiliar with the procedures, a nissen fundoplication was done to help keep her from vomiting during chemo. Due to the paralysis of her vocal chord, they were very afraid of her aspirating. She also had reflux at the time, so they did the pyloroplasty to empty the contents of her stomach quicker. This is done by increasing the size of the opening to the small intestine.
Emmett and I have read stories of people who had nausea problems after getting a fundoplication, so we are wondering if the "backing off" of the amount during feeds is going to assist in this gagging issue. And when I say gagging, it is not like the gagging we may all see in a child who doesn't like there food. It is violent, like a bad stomach virus heaving!
Thanks for the prayers, and pray for a good and clear scan on Friday.

Long time...no post

2011-01-05T14:44:00.000-06:00

I know I haven't posted in a while. All is going well right here. Ivee sees the gastroenterologist next Tuesday. We'll be checking up on her nissen-funduplocation and her reflux. She should have been watched all these years, but no one sent us to or told us to see one. We have been seeing the ENT, and he was the one who finally asked us who we took her too. Praying that she is okay, and that we can figure out what is going on with the constant gagging.
We'll be going to Memphis for her MRI check up and to have her port removed (if all is well) the last full week of January. Praying that all is clear for the MRI and that surgery goes well.
Had a great Christmas. Will probably post pictures on here, and on Facebook.
Once again, thank you for your prayers and your continued loving on our family!!!!

All DONE!!!!!!!!!!

2010-11-06T15:01:00.000-05:00

Ivee is out of her cast, and a much happier but no less demanding little girl. I will upload some pictures and perhaps some video soon. She's been able to crawl a little bit, but she is weak and unstable. Mommy did a little PT with her this morning. I will get more aggressive with her as the days come.

Update...long time no see

2010-10-29T15:51:00.000-05:00

Same old same old, so nothing new to report. We have one week until the cast comes off. We hit a wall last week, but Em got a sitter and took me out last Friday night. We are all definitly ready for this to be over. Thanks for the prayers and support

2010-10-06T10:41:00.000-05:00

Ivee's adjusting better than we imagined. She takes being stuck in a body cast like a champ. Nights are a bit rough, waking up alot, probably achy! (Nights are always worse when your sore, sick or recovering). Friday is her 1st post-op surgery. We'll ask to have some of her cast removed so we can get to her gbutton more easily. It's better to feed her propped up, but when you prop her, the g button is almost impossible to get to. She slips to low into the cast.
Well, she asking to be moved again, gotta go.

2010-09-26T15:42:00.001-05:00

Ivee was released from children's on Friday evening, so we stayed in the hotel that night. We got home Saturday around lunch time, and she has been very happy to be here! We are all adjusting to her situation and WEIGHT! She is quite heavy right now. It's like picking up a log, so now I call her Pinocchio!!!

2010-09-25T08:35:00.001-05:00

Headed home from birmingham. Praying for a safe a stress free ride home in her new harness.

2010-09-23T17:03:00.001-05:00

Ivee is contently watching UP from her hospital bed, lying next to daddy. She is not too fond of the RED cast (she chose the color) going from chest to foot. It's to the foot on the right and to the knee on the left. She's once again proving what a strong girl she is. Hardly any complaining at all. She is so amazing.

2010-09-23T08:29:00.003-05:00

Ivee's in surgery now

Ivee and Recovery

2010-09-15T21:51:00.000-05:00

So, a friend posted a question wondering what Ivee will be able to do during recovery. I am not sure at this time, but can speculate. She will be in a full body cast from chest to toes, in a sitting type position. It will probably require that she be propped up though. She will have full use of her arms, so I believe I'll be investing in some kind of table that could somehow fit over her legs. That way she can do puzzles, draw, color and the like. I'm praying that this is the case. Once again, I'm not completely sure what position the cast will have her in.
Another question/s asked of me lately is "What about going to the bathroom? Or feeding her through her g tube?" Good questions! They will leave the "diaper" area open for us to change her. They will also leave an opening around her button for feeds. Of course, NO to baths, so I guess a good wipe down every night. My plan, for now, is to still take her to school periodically. I will stay there and help her out. Her teacher will have her hands full enough with the other kids to have to worry about Ivee falling over. We will see what we can really do once we are home.
Thanks for caring and checking in!!! We love you all and covet your prayers!

Swallow Study

2010-09-14T08:40:00.000-05:00

     Ivee made it through swallow study with the promise of the purchase of a new dress, which will have to be bought tomorrow cause Walmart had NOTHIN!!! She passed most of the test. On liquids, it puddles on the vocal chords, then after a few swallows, most clears. Some remained. On thin feeds (ei apple sauce, soups, yogurt consistency) she aspirated just a little bit, but we saw it. On th...icker foods (ei. p'nut butter, Pudding, refried beans consistency) she got it down all at once fine. So, drinking without a straw and thinker foods that stay together are the recommendations for now. Em and I aren't too worried, but she does tend to cough here and there when eating. It's been 2 1/2 years since her last study, and in the time we have feed her and given her drinks by mouth. She has never had a fever, severe cough, chest congestion or anything that lead us to believe that she had problems with aspiration. Never had pneumonia or other pulmonary issues.
     SO.....as her ENT at St. Jude, Dr. Thompson (who by the way also has a paralyzed vocal chord), says, "I love coffee. I aspirate it everyday, but it hasn't stopped me from drinking it." I guess what he means by that is...when she learns to love the food and gets more practice in swallowing and using those muscles, we won't be able to stop her.
     Hip surgery is only 9 days away. I don't seem to be able to go to sleep too well knowing what all I need to get done with the house, kids, and details. The mind just keeps running and running. Then I keep thinking about what we are going to do with Ivee. I don't stress out too much, and usually I internalize it. BUT lately I see myself snipping at others. Trying to keep it in check!!! It doesn't help my attitude when Ethan and Brittney are at each other lately. Ethan also has homework from the time he gets home and goes to bed. Brittney has two projects due this week. Hoping the week of the surgery things will slack off for them since we won't be home. Thank the Lord, once again, for our neice Erin. She is keeping them again for us. She is awesome!!!!!!!

A few more cruise pics

2010-09-08T11:37:00.001-05:00

Our 6 person platter from Chen Rio

He tasted sooooo good! Really. And not I didn't eat the face.

YMCA

Em and McCall goofing it up at Chen Rio

Mexico and Surgery

2010-09-08T09:07:00.000-05:00

Em and I had a wonderful time on our Cruise. A great rest before Ivee's surgery. Here's a few pictures and then I'll share the surgery information.

Dinner at night on the boat. Em, Catina and McCall in the Imagination dining room.

In the Atrium of the boat!

The Atrium from the top floor looking down.

Enjoying the kid free area of the Lido deck.

Before Formal night in the dining room.

Cozumel Mexico!!! Ahhhhh

Catina and Hope's feet in the Gulf of Mexico!!!

Em trying to command ownership of an old coral reef off the beach.

Chen Rio...LUNCH!!!

The beach!

Lunch time at Chen Rio

The wonderful, many colors of the water in Cozumel.

Catina and McCall Snorkleing

Tulum ruins in Mexico

Em and iguana

Playa Del Carman

Our Cruise Director Fileppe' after the Groove for St. Jude party on the boat. Carnival cruise lines is raising money for St. Jude right now!!!

Ivee's surgery is Thursday, Sept. 23rd at UAB. She'll be in the hospital for 2 to 3 days, and in a body cast for 6 weeks. So, from the end of Sept to the beginning of November, the Foleys will be needing prayers!

It's Tomorrow

2010-08-15T21:09:00.000-05:00

So, tomorrow I send Brittney and Ethan off to public school. Brittney for the first time in 7 years, Ethan for the first time ever. I think he is excited. Britt is a bit nervous and scared! Mom is a bit sad. Ivee will be a bit mad, for I am not taking her tomorrow. I'm ready for a temper tantrum once I drop Ethan off, and she doesn't go in to the building next door. She only goes Tuesday to Friday, so she won't be in tomorrow. Gotta have speech on one day of the week! So, I am heading to bed to get them up early. This is definitly something they have to get used to!!! Ethan made himself a list tonight of everything he needs to do in the morning. Praying for my boy, that he will be able to keep up, succeed, and find many new friends/ no enemies!! (If you know what I mean.) He has a big heart, and is my goof ball, but some kids can be mean. Time for him to get a taste of life outside of church friends. Brittney is just scared of the unknown. I know she'll make friends and good decisions. We've had quite a few talks about this new mission field she is entering. Recently she learned not to "read a book by it's cover!" No matter what the "outside" package looks like, you can't judge the heart. Actions speak loud. Silence sometimes speaks louder! She is my talker, but hopefully God will keep her mouth in check. I have reminded her to respect her teachers and they will like her just fine. I have told Ethan to respect his teachers or he's going to have a meeting with my hand on his behind :)
Well, that is the Foley Family's next step. Em and I are leaving on a cruise to Mexico next week. When I scheduled it I thought the kids would have 2 good weeks of school behind them, but it started a week later than I had anticipated. I'm looking forward to our time alone, but it does make me a bit anxious to leave them all behind. (Esp. being that we are at sea and not easily contactable... is that a word?) I've been out of school 17 years, it becomes rusty :) Next step when home from vacation.....schedule Ivee's hip surgery...YUCK!!!

Another Step

2010-08-03T08:18:00.000-05:00

After homeschooling my kids for three years, today I go register them for public school. Yuck! A big part of me wants to keep them at home. I will completely miss my kids. But, part of me knows this is what they need. Ethan really needs to be around boys. He said he wants to continue to be homeschooled, but I think he will really enjoy making friends. He is so sociable! Britt is really nervous about going to high school. We have tried to prepare her mind and heart for what she is walking into, and what all she is going to see and hear. After private education and homeschooling, my kids are pretty sheltered. What I think I have taught Britt is that this next step is doing what she has prepared for all these years. She is stepping out into the mission field!!!! She is trying not to be anxious, but starting something new can always be scary!!!
So, today is just another step in out lives. Ivee is ready to go back to school. She has missed her teacher and she likes to play. She doesn't care too much for the other kids. She finally "allowed" them to play with her towards the end of the year. I think they babied her at first, and she didn't like that. It's hard when you are 4 and the size of a 2 1/2 year old. They all think she is so cute, and she uses a walker, so they think she needs everyones help.
So, today the Foley's take a step on a new adventure. We'll see where this road takes us!

Scan

2010-07-29T10:22:00.000-05:00

Ivee is 3 YEARS FREE!!!! This is a leap for her, as her percetage of survival has jumped to about 87%. We are so relieved! We know that God is faithful no matter the outcome, but we do give him the praise for her life and health! He obviously isn't done with her here on this planet. He must have something in store for her life, no matter how long she is on loan to us!