2 weeks away...doctors visits...then we played!!

The end of July and August were quite busy. The kids and I were gone from Daddy for two weeks, and lets just say, daddy got really lonely, and eventually, we all got home sick.

 We began our adventures by heading to Memphis at the end of July. Mommy and Ivee were accompanied by Brittney and her friend, Corene. Corene has always wanted to visit St. Jude, and as it is with all people who visit there, she was quite touched. It doesn't feel like a hospital, and St. Jude is not draped in the doom and gloom that many think it might be. However, you do pass sick kids, kids on chemo, kids after surgery, and this time unlike any other time, there were many, many kids there that have lost a limb to this disease. I've never seen that many kids there at one time who are not only fighting for their lives, but have already had a disfigurement because of it. Many people who see Ivee don't know her struggle with this horrible disease, but these poor babies, many teenagers, have a very noticeable and embarrassing reminder! They're struggle, faces, and hearts are not far from my mind!

 We did leave early on Sunday morning so that we could fit a visit in to the Memphis Zoo. Ivee loves it there and Corene really loved seeing those pandas...who were awake and eating, luckly. 

And Ivee enjoyed her favorite part...

the Merry-Go-Round! 

And my favorite part was in the indoor bird house....where birds were flying at Brittney's head! :) 

After Ivee's good MRI news and her loooonngg endocrine test, we arrived home late Wednesday night. I had one day to do laundry, recover and repack for a trip to North Carolina to see my dad's brothers, sister, and all my other family there. We left out VERY early Friday morning for a 14 hour trip. We actually made pretty good time! 

My dad's brother, Wesley, is an avid fisherman/boats man. He took the kids tubing for the first time on Saturday. Ethan was a go from the start, Brittney took some convincing, but loved it as well. And once we got Ivee on the boat, she LOVED the ride. She wanted to keep going faster. 

I just love Brittney's face in this one!! :) 

Ethan even got to drive it, making Brittney, who was on the tube, quite nervous. But he did a great job! 

That night we had dinner with most of my uncles, aunts, cousins and their kids. Here is my father, center, with his two brothers and my cousin Keith, who so graciously gave us a place to stay. 

Ivee took immediately to Mary Emma, my cousin Kara's little girl and the new baby, Michael! Ivee just loves them babies. 

Ivee's two greatest loves while we were there, though, were the Gator, which she asked to ride everyday, and the Barn, where we stayed. She commented many times that she really missed daddy, but that he needed to come see us, at the Barn! Even when we got home from our trip, she said, "Daddy, you need to come to the barn!" My cousin did an incredible job of converting the old place into this really nice two story living space. We truly appreciated being able to stay there! 

The Monday after we arrived in NC, we left out early again for a two day stay in Washington DC. I and the kids had never been there. It was quite warm, but I was very grateful to be able to share that with my children, and plan on going back when it is cooler with the kids and Emmett. 

We visited Ab two times the first day, during the day and at night. The next day Ivee awoke and said, "I want to go see the big boy in the chair." Love a child's mind! 

We visited the WWII memorial, Washington Monument, passed the White House, and ended the day at the Smithsonian Natural History Museum. 

Ivee loves elephants. 

That night after supper at the GREAT Mexican/Salvadorian restaurant in Arlington, we visited the Capital at night. It was so beautiful! 

Then we visited the big boy in the chair again, and the Jefferson monument. 

Tuesday, we visited Arlington National Cemetery. I was quite moved and emotional at the massivity of the grounds and the many, many lives of service men and women buried there. 

In DC we were blessed to here the playing of this sax player outside out lunch establishment. He had only been playing 2 years, but you would have thought he was born with that thing in his mouth. He was packing up to leave as Britt headed out with money to give. She got out there and told him she had cash, but he had to play her a song for it. 

Our DC trip ended with a walk through the Air and Space Museum and the Smithsonian Castle! Beautiful gardens there! 

We left DC, headed back to NC for a little more family time. Saturday, made our way back home through the Smokey mountains, and into the arms of one happy Daddy!!!! Who was smothered by one happy Ivee! 

Two days later we finished out an exhausting time with my birthday "party", cause if you have a birthday in this house, there MUST be a party. This law is know as Ivee's LAW! She and Britt even went and got me a cake...it happened to be Brittney's favorite kind of cake! 

And so ended a long 2 weeks that left us with 1 week to prepare for school! 

Headed home late...

Ivee is currently sitting in a chair in Radiation Oncology waiting for her growth  hormone test to begin. We are waiting on a medicine from the pharmacy, one they didn't have in stock. I don't know other details, but I got a simple text message from Dr. Merchant yesterday stating, "MRI is fine!" Well, that works for me! Thank you for your prayers, but remember to still lift up her body in prayer today, that she won't become sick from this four hour test, and that we will be able to drive home immediately afterwards without her feeling horrible.

Live... From Memphis

Yes, we are on Memphis. Its that time again. Ivee's MRI is early tomorrow morning. We will probably get the Results Wednesday morning. We were only scheduled with appointments through tomorrow, but Dr. Merchant wants to add growth hormone test Wednesday morning. I tried to get the endocrine clinic to add it this time, but they were full. He really would like to see something happen ASAP with ivee's growth, so he asked if we could stay some on Wed. To have his clinic administer it. It is a long four hour test of bloodwork every 15 minutes. It will probably make her very sick to her stomach as well. Please pray that Ivee does fine during it, and that she won't feel sickness. This will also be two nights in a row that I have to make her fast. Praying that the get the answers that they need from this test as well so we can do what we need to for her. 

So, clear scans, no nausea, answers! Thank you again and again for your prayers. 

On a brighter side today...

Ivee received her hearing aids this morning. She fought us to put them in, a good old tempertantrum!!! Once I finally convinced her to let us go near her ear  we got the right one in and turned it on. She got this wide eyed look and then a smile covered her face. I asked her questions, and I made sounds for her to copy and she was able to form an F and S sound better then she ever has. Once she got the left aid in, we headed to the store down the street. She started telling me she could here the car beeping (it beeps when you crank it), her walker squeaking, her cough better (that one was funny), and her feet stomping. She is amazed and momma is excited! Her reaction has been great. She kept them in for four hours, which is pretty great. She didn't even ask me to take them out. I offered though, cause I know her ears will get a little sore and she needs to adjust to them. When daddy get's home, though, they are going to go right back in so she can show or should I say "tell" him her whole new world!!!

Lucy....

Precious Lucy's cancer has returned. There isn't much time for her, but Kate and Erik are going to make the most of it. God, please don't let Lucy suffer and make she pass into your arms peacefully....

Urgent Prayer Request

Please say a prayer for my friends Kate, Erik and their sweet Lucy (link to the left under medulloblastoma-Lucy). She was in surgery and treatment in Memphis at St. Jude when we were there for Ivee's recurrence. Lucy needs some Supernatural healing right now and some perfect clarity for her doctors!!!!

Happy Birthday My Ivee!!!!

My baby is 6 years old today. We have reminisced so much this weekend on how we never knew if we would ever see Ivee have this many birthdays! I feel so incredibly blessed to celebrate another year of life with Ivee here on this earth. I am reminded everyday of this when I see the pictures of links of friends that will only see their child again in heaven. 

Well, we celebrated like a Princess and had a great time at Ivee's Birthday Festival of the Lanterns. Enjoy the pictures of our celebration this past weekend, and if you would like, leave Ivee a birthday message here. I will read all of them to her!

We begin with Ivee's Rapunzel/Tangled cake. Mom likes to experiment and try new things. This year it was sugar art. Unfortunately, as I suspected might happen, humidity won out on some of it. My grass art didn't quite make it over night to the party. Some managed to stay upright, however! 

Mom took a shot at this Pinterest Idea. I combined some ideas to come up with Jello sailboats. 

I spent a couple of months planning and this past week making most of the decorations. Here are the festival pennants, and some frying pans! :) 

Couldn't be a Tangled festival without lanterns. I spent a couple of nights drawing, cutting, taping, and gluing about 15 of these! 

We are blessed to have so many friends who love and cherish our baby girl. Wish we had room to invite them all. Many have shared Ivee's journey with us. 

Getting some lovin' from Mrs. Cathy, Angela and Catina!

Present time!! 

The candle really tried to win that night. It took MANY tries to get that thing out! 

(This one just kills me!) 

Favorite Cousin in the whole wide world. They are so precious together. She loves her Haley!  

The Princess on her royal Trike! Ms. Elana and Mr. Brian got her three license plates to change out. Ivee chose the "Jesus loves me" tag and mom put "Spoiled" on the front! Oh, is she, and she deserves every bit of the spoiling!  

The decorations and paintings once the sun went down, from our porch. 

Lanterns and turtle pond all lite up!  

I spent Tuesday baking cakes, cleaning and painting this mural for Ivee on the back door! She loved it so much she gave me sugars without asking!!!! 

Anna, Brittney's bestie, helped with painting as well. She relived the moment of Rapunzel letting her own lantern go. 

 Brittney brought us some nature and Pascal!!!! 

Thank you God for your every blessing on this family! For the things you have taught me, things that I could never have learned without this journey!!! You are a gracious and loving God and I thank you for the miracle of Ivee I see everyday! 

May, Updates, Scans and Birthdays

I wish I had more time to come and just write on my blog, to tell a nice story layout, but there is always just so much to do. My house is a wreck (to me) so once I finish this post, off to "work" I go. I just wanted to update on Ivee's scans and reports from last week.  So, here are the details.

Eating  and Nutrition- For the month of April, Ivee was beginning to take in 4 to 6 ozs of thick soft foods by mouth. She has done well, not much coughing, but she has backed off since her allergies have kicked in this season. So, the last week or so, she has not been wanting to eat. We are trying to get her allergies and congestion cleared up so she can continue to progress! We will be getting Ivee a Modified Barium Swallow Study. It has been 2 years since Ivee’s last. She might be aspirating a bit with her eating. 

MRI - MRI revealed no sign of recurrent disease, so she's still a NERD! Yay!  She still has a large edema on the back of the head under incision site. It is still causing some compression on the spinal cord.  MRI also revealed what may be some inflammation on the spinal cord, but the radiologist did make note that the contrast dye used may have been more concentrated than last MRI. Dr. Merchant is impressed with her progression. He couldn't say enough how good she looks. 

Endocrinology – Hormone levels were good except for the nutrition hormone number. They Suggested a Growth Hormone Stem Test be done. Ivee’s bone scan in January did reveal Ivee had the bones of a three year old.

Audiology- Ivee's hearing hasn't changed for the worse or better in two years. Her hearing reveals damage in both ears, dropping off significantly after 2000 hertz. Due to the lose, she cannot hear the f,s, or th sounds and the blending and ending sounds of words. Suggestion is to have both ears fitted for hearing aids. This, perhaps, is the reason she has had difficulty in kindergarten with language. Emmett and I will observe her over the summer and make a decision on whether to move her forward to 1st grade.

PT, OT, and Hippotherapy- Both were impressed with her development. Had her fitted for new braces for her feet ankles. Hippotherapy has made all the difference with Ivee lately. She is taking some independent steps now, and she is more stable and she is stronger! I can't believe how much it has helped in just 6 months.

Eye clinic- We tested her eye sight yesterday. Significant Improvement in right eye after patching everyday for 3 to 4 hours for 3 months! NOW we will maintenance patch three days a week for 2 to 3 hours.

I know that all sounds very clinical, but it really is. These are some of the notes I shared with her doctor. She will return to Memphis in 12 weeks for another round of testing. 

MAY 8th my baby girl will be 6 years old, and do I feel EXTREMELY blessed!!!!! She can't wait for her party! And I love that I still have a little one to make cakes and parties for! 

The kids will be out of school soon, and I am ready for us all not to have to worry about school! My Brittney will be a Junior next year, Ethan will be a middle schooler, and Ivee will be back in elementary school, hopefully as a 1st grader! Everyone is growing up and moving on, whether momma likes it or not! 

From the Land of Drama

It's not a bad thing. It's just when you have a teenager, a tween and a princess, there's always something going on! I'll take it! 

Today is the first Ependymoma awareness day. I, however, have been aware for 1948 days since this monster of a disease tried to take my heart, Ivee, from our lives. We leave tomorrow for Memphis, St. Jude for her scans and appointments. I do pretty well keeping my anxiety at bay. I know it for two reasons, God made me this way and he calms me! But, I do know it's there. It will be a VERY busy week for us, lots of appointments! Thank you GOD for making me aware of how precious life is!

I can't believe I forgot to post this day. I feel horrible, cause it was my every intention too. However, this family needs prayers now just as badly. Our little friend Brandon Moseley lost his battle with DIPG on March 31, 2012. We lived with Brandon and his mother for 2 months at the RMH. He is such a sweet and funny little boy, and he fought for his life so hard. He doesn't fight anymore, though. Now he sit with Jesus, whole, happy and in pain NO more! Please pray for Millie and Joe and Brandon's 2 brothers. 

Prayers for Daniel

One of our Ependymoma friends passed away today at the age of seven. Rest in Jesus arms, Daniel!

Update and prayer request

     Emmett had a few rough days, but Monday I drug him out to the store and made him walk around. He had to use the grocery cart as a walker though. He felt alot better later, but tired. Yesterday, he was able to get outside and do some work, but once again, wore himself out. He is tired this morning, but with pillow in hand, he went back to work. He's going to take it easy this week, but he's doing well. Thank you for the prayers!
     Now Friends, Please say a prayer for two of our little friends and their families.
             1) Olivia has an MRI tomorrow. She has some strange issues, and they are making sure she doesn't have a recurrence after 5 years of NERD. Pray for mom Kim and dad Andrew for peace.
             2) Our Memphis house buddy, Brandon, is not doing well. He is on palliative care now. He has stopped walking and is not able to move his left arm.  His whole left side is heavy and at times it's hard for him to sit up. He has morphine now and has trouble going to the bathroom. Pray for parents Millie and Joe as they are watching Brandon go through all of this. It is terribly hard!
     Thank you always for checking in on us. Brittney (15) has graduation exams this week. If she passes all, she'll be done with that. She'll be 16 this summer, and this momma is looking forward to having another driver in the house! Ethan (12) is still...well....Ethan. He's doing well in school. He still has some social issues with mean people...yeah, we call them bullies, but one day, when he really hits a growth spurt, he'll be about a foot taller than all of them, and hopefully I can teach him how to not let people tease and run over him. (Boys from about the age of 11 to 13 are just so....stupid. It's the only word I have! Oh, wait...hormonal...that's another one.) Ethan has issues of his own. He has his angry spurts and he sure is lazy, but he's a good kid at heart. He just has to figure out, his parents actually do know what they are talking about. He does catch himself, once in a while, whining, complaining and lashing out, and he will apologize....but then he just does it again the next day...Baby steps....baby steps!
     Ivee is doing so well. She's getting bigger and smarter and funnier all the time. For the last three weeks she has been eating her whole 3 oz yogurt cup at school everyday! By Friday, that will be 15 yogurt cups in 3 weeks! She still loves her ice cream and Popsicles. She has tried a few other nibbles of some other stuff, like mashed potatoes (disguised as sour cream), pop tart, and she continues to nibble popcorn, tortilla chips, and pudding. The meds the GI doc put her on just seem to keep on helping! She doesn't take in more than 100 calories by mouth a day still, but compared to 6 months ago, when she took in 0 calories by mouth, we'll take it! Just keep moving forward! Her next MRI is in April, so I'll comeback and remind everyone closer to the date.
     Thank you again, and God bless you all my friends!!

Em still has a fever. On 1L oxygen, but his lungs are full of fluid. He has negative pulmonary pressure. In other words, he has restricted breathing due to the fact that he was able to pull fluids into his lungs after extibation, most people aren't strong enough to do this, but Em is pretty muscular and has a lot of strength (as most singers do). Going to do chest CT. put him on lasiks to try to dry him up.

Another Long day at the hospital...BUT NOT WITH IVEE!

Today Emmett had a minor outpatient procedure done here at our local hospital. No big deal. He's had oral surgery before and an endoscopy, but this was his first intibation. We are not sure WHY they intibated, but I guess it was enough of a surgery to have it done. Well, after the surgeon came to talk to me and tell me all went and looked well, I waited 2 hours. To me, having had a life of hospital stays and visits over the last 5 years with Ivee, this was a long time. Finally, when they called me back, I discovered he was having trouble breathing and keeping his O2 up. As well, he was coughing and throwing up blood, not alot by any means. Since then, they moved him to CCU. His heart rate is elevated and his blood pressure low, so they are keeping him over night. He is just exhausted, but we are trying to get him to do lung exercises. So, I am at home now, putting kids to bed and about to hit the sack myself. As soon as I drop the kiddos off, I'll be returning to the hospital to check on him. Praying that when I show up he'll be off oxygen and his heartrate with return to normal. Forgot to mention, he has a low grade fever as well, about 100.3. So, if you are up for it, join in praying for my hubby so he can come home and be well tomorrow. Thanks friends! 

Hope

It's the end of February, and All's Well!

I can't believe two months have passed in the year 2012. February marked the 1 year anniversary of Ivee's 15th surgery and her recurrence of cancer. God has been very good to us. We have made great new friends from that journey. We have watched God heal children here on this earth and some in passing made whole in heaven. Ivee is continuing to move forward, as well all are. Thank you Jesus for her continued healing! 

We celebrated my dad's 75th birthday this past week! I was fun having him open his presents, as we wrapped all the parts separately to get to the main gift! Thanks to all my siblings and mom for helping pitch in so we could get him something he really wanted. 

Today, Ivee celebrated Dr. Seuss' birthday at school and in honor, the kids reenacted their own versions of Wacky Wednesday. 

 

Recently, my oldest baby, Brittney, performed at her school talent show. She didn't place (but in this momma's opinion deserved at least 3rd place! Many people at the school agree) I was so proud of her. 

Here is her video! 

St. Jude Gives Back Big Game Day

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

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

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

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

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

 

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

 She was getting excited when auction time was coming! 

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

And the results are....

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

MRI day

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

One More

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

Scanxiety and so much more...

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