From my friend, Kate

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!!!

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!

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

     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

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

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

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

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

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

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

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

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.....

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

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...

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

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!!!!!

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!!!

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

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

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

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

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>>>>>

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

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

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

Is it time....

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...

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....

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...

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

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....

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....

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...

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!!!!