Give Thanks Walk

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...

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

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

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

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!!! -------------------------------------------------->

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.