New video

I have a new, updated version of Ivee's story. I just wanted to make sure that everyone has a chance to see her progress, and remember where she's come from. Here's the link

https://youtu.be/0av4CfwKG1g

Also, he is the link to my 2016 St. Jude fundraising page. 

http://fundraising.stjude.org/site/TR/Walk/Walk?px=2064530&pg=personal&fr_id=57397

This is a picture from last years walk.  You see pictured with us my dad and my good friend, Leslie​. Leslie had her own life saving, major surgery yesterday with her battle with the Big C. And you know what? I woke up this morning and saw post from her about childhood cancer. She is passionate about it, and she's never even walked that road. You know why she's passionate? Because children deserve more than 4% of funding to fight for their lives! They deserve cures and better treatment! (Leslie holds a Cookies for Kids Cancer event in Bay Minette every spring to raise funds for research and bring awareness)

We walked in AL last year. This year, I'm walking in Houston. I'm waiting for people to join my team for that day. I am almost to my goal! I "need" your support to reach it! To join Team Ivee only takes a $10 donation. The Walk is Saturday, Sept. 26 at the zoo. Who's gonna help a girl out!? 

Click the picture below to join or donate to TEAM IVEE! 

Ivee is.....NiNE!

We celebrated Ivee's 9th birthday on May 9th. She asked for a Big Hero 6 party, and as always, mom was happy to oblige! 

Here is her Big Hero 9 cake that she asked me to make for her. I'll make her cakes til she's 75! 

She and her friends doing some LEGOs in her room.

She wanted to get her groove on with Just Dance on the xbox. 

LEGOs was high on her list, but we were also blessed with about 50+ birthday cards, notes, letters, and deliveries that week, and even after. I am so thankful to all of you who sent something to her! 

A great group of people from my parents church and my hometown pulled together and sent Ivee a big box with surprises and over $100 in 1s. She was ecstatic, to say the least! 

We were able to find a "specialty" bike online. Though it cost a little more that we had hoped, it will grow with her up to 5 foot 5 inches. We will be shocked if she ever reaches that height. So, as long as she doesn't get crazy, this will be her bike for at least the next decade! 

Ivee and I leave for Memphis this Monday, Memorial Day, for more scans and doctors appointments. Just the two of us, but this mom hopes for an easy trip with easy traffic! 

Update news: Two things I wanted to share with you all. 

First: Wed., April 1st. We found ourselves back in the ER with Ivee. She had been declining with her oxygen rates at night for a while, really over a month. This night, fever, high heart rate and needing O2 support lead us to believe she had double pneumonia, again. An x-ray revealed her lungs looked good except for the lower left lung, where they believe she has scar tissue, looked larger. She slept in the ER on Bipap needing 9 liters a minute oxygen bleed in. (FYI: The max measurement for allowed oxygen in the hospital only goes to 15 liters)

They admitted her ICU the morning of Thursday. After a 9 hour stay in the ER, we were happy to get a decent nap. That afternoon the on call Pulmonologist came by. At this point, we had weened her down from 9 liters to 5. We have not had this doctor before, but he likes to be a bit more aggressive, and I was ready for someone to do something, after months of calling her personal pulmonologist nurse, and hearing "Your doing all you can do at home. Just keep doing it." (Let me add, we have a sleep study scheduled to "see" what else we needed to do and what changes to machines need to be made. But I have been struggling with having to wait until August for that appointment. Yep! The next available date for a study is in AUGUST. I was at the point of calling and saying, this is a medical health emergency. Can't you move her up somehow? I digress.) This doctor, whom is very knowledgeable and specializes in children who deal with capacity issues and aspiration, adjusted her bipap and cough assist machine, and we used them more frequently that day. He also put her on a drug to dry up secretions at night (which Emmett and I had often asked other doctors about, knowing and having used this drug in the past). By Thursday evening, she only needed the bipap while awake. To our surprise, the night came, and by morning, Ivee hadn't needed any O2 bleed in at all. While SLEEPING! 

This child went from being 9 liters dependent to less than 48 hours on room air. This was only something God could do. Did the doctor help? Yes, but it had to be orchestrated by the Lord.

Since we have been home, she has done incredibly well. She's needed some O2 bleed in at night with her Bipap, but, except for one night, it's been less than 2 liters. She is more active, and wants to taste test again. 

 Second: As you all know, Ivee had a good MRI report in February. We didn't get the news from Dr. Merchant, do to scheduling conflict that week, but his NP had told us that it was NERD or clean.

Yesterday, I received an email with and MRI scheduled for May. I thought there was a mistake, because we are a six month scan intervals. After emailing his nurse, I learned this wasn't a mix up. The doctor is not necessarily "concerned" about anything, but he wants to take precautionary measures, monitoring the cystic and brain changes since Ivee has endured so much trauma to her brain and brain stem. 

Needless to say, I am very pleased to have a doctor who cares so much and wants to ensure that my daughter is safe and doesn't want to take any chances. However, this mom wasn't mentally prepared to deal with the anxiety and crying/screaming that will ensue from the great "Needle Fiasco!" The needle stick sends this child into mental and physical meltdown. 

So, remember us on May 26th and pray that we can make it through, just the two of us! 

Thanks friends!  

(Easter 2015)

Over the years

It's hard to believe this picture was taken four years ago. I was looking through my TimeHop photos/post. You always get reminders, of good or bad situations, whatever it is that you posted to social media over the years on that particular date. 

Not that I need reminders of many things, but this weekend, Timehop reminded me of a few things and I realized that Ivee had something tragic happen on the same dates two years in a row. 

January 2010

Five years ago today, after a ten day hospital stay with an external valve and strong antibiotics, Ivee would under go a shunt valve replacement surgery after cellulitis made a "rare" development on the external side of her shunt line. She had a horrible skin allergy to a certain powerful antibiotic, and the doctors wouldn't listen to me when I knew which drug it was. She continued to get worse for seven days, til after the surgery and out of PICU, I pulled a resident off the floor and demanded he listen to me. Finally, someone heard me and we were able to change the drug and get her better. 

Flashe forward one year....

January 2011

I was in Memphis with my friend Cathy, who was with me on many trips up to St. Jude when Emmett couldn't go, to get Ivee's scans. It was three and half years from the end of Ivee's treatment in 2007. We had just gone from 3 month scans to 6 months. She was moving forward and getting better every year. We had scheduled to have her port removed on Thursday of that week and Emmett was going to fly up for the surgery. We waited in the clinic for the doctor to recieve the news from the scans the day before. Usually, he walks in and says hi, things look good. He gets straight to the point, always, knowing that the parents want the "good" news first to set their minds at ease. I learned that day in January of 2011, that he gets straight to the point with the "bad" news as well. I honestly don't remember his exact words, I just recall that he said the original tumor (left behind from the first tumor removal), that we had been watching and had hoped was scar tissue, was now growing. The tumor had survived chemotherapy and radiation. 

God changed my life the first time our daughter faced cancer, but knowing your daughter has cancer again...it's a different kind of life changing moment. You already know this road. You already know what the first tumor surgery did to her body. You know that you are only suppose to have a round of radiation once. The first round she had 33 doses, and here you are trying to decide if your going to give it to her again, cause so far, in experimentation, this has been the only way to effectively "try" to defeat her cancer. You know other children have done this second round and just a handful didn't have recurrent tumor after the second time. The second tumor surgery (in February) has permanently killed her right vocal chord, and her left is very weak, she can't swallow well, she aspirates...She has permanent damage in many ways, but she always fought to move forward. 

....and....

HERE WE ARE NOW!!!

Look at that beautiful family! I am so blessed...no matter the outcome. No matter our continuing struggles. 

My babies....can't believe they are 18,15 and Ivee will be 9 in May! NINE! 

Our move to Texas has been a great decision for our family. Ivee is doing well (much better since we moved out of the last house that made us all sick). She has great doctors here. The Pulmonologist has done so much to make her quality of life and sleep so much better!  I'm trying to keep her well during this flu season, and so far we've dodge it. 

We have found a great church family. We are so excited to have a new pastor and see where this new journey is going to take us. These people feel like family, something we have searched and longed for in over five years. 

As always though, I ask for prayer for a few things. 

First, for Emmett and his work. Just lift him up please!

Second, Ivee's next MRI scan is at the end of February three and half years after the end of her last tumor treatment. This momma is a little anxious, but I know who holds today and tomorrow. And that we will continue to get what we need for her health and that in in her education. She will make leaps and bounds to catch up. 

Third, my other three kids...that's right, I said three. We have an extra child now, my niece. Please pray for my three teens in the house. That they will make Godly decisions, learn from heir mistakes and they will understand that everyday is a new start. Pray for them as they are still adjusting to new school, teachers and peers. And that they will make wise decision in friendships and relationships. 

Thank you all for nine years of praying us through! 

The most Blessed Season of All....

As I sit here watching TV with the girls, I just flashed back to Christmas 8 years ago. Ivee's first Christmas, our family awoke at the Ronald McDonald House, just down the street from the Children's Hospital, without her as she lay in PICU 5 days after brain surgery. 
For Christmas, that afternoon, she got the gift of her own room on the regular floor where she would spend 25 more days dealing with pain, wound leaks, fighting nurses, undergoing procedures, and having more surgeries to place a feeding tube in her stomach, tie her stomach around her esophagus and install a central line in her side where at the end of that time she began chemotherapy.
MY how our lives changed, and I cannot begin to explain how God showed me the true meaning of Christmas. How very important is to have family and how desperately we need to love other people!
MERRY CHRISTMAS to all of you! I pray that you all find the reason for this day and that you find the TRUEST love of all!

GIFT DAY: 8 Years and counting

Yesterday began the 8th anniversary week of the hardest time in my life, but a journey that has brought me more blessing over the heartache. 

I am incredibly blessed and my heart over flows with the love I have for my baby girl. I think my baby girl who have made a huge change in my life with or without the struggle she has had facing cancer. He heart is just so kind and loving. I want to share a look down memory lane, not overflowing this post with too many pictures or flashbacks. 

This was my baby girl the day after her fall from the grocery cart, with only a bruise on the forehead to show for it. The next day she would undergo a 5 hour brain surgery that would never leave her looking the same or being "normal" again. 

She would never eat by mouth again. 

She would never cry or speak normally/loudly again. 

Her eyes would never be the same. 

She would never hit developmental marks in her life like normal children do. 

She would never play like a normal child. 

These things never entered my mind, and our family had no idea she would never get a normal childhood. 

A few days after her surgery, I got to hold her. She just laid on momma's chest and stopped crying. Even now, my heart breaks seeing her this way. 

Jumping ahead, chemo was a tough, tough road. She began to get stronger after surgery (this was Valentines day 2007, two months after brain surgery). She was in the hospital, either for chemo or because she was Neutropenic. She was a happy baby through all of it, even when she looked like death was on her face. 

We made it through chemo and radiation that year and celebrated our first G.I.F.T. day that December 2007. I made a special decal just for the occasion. 

G.I.F.T. 

God Is Faithful and True

16 surgeries, 6 months chemo, 63 doses of radiation and she would always find the bright side of hospital stays. This was the last time she would have a shunt placed, and I hope it will be the last time for the rest of her life. She was 4 years old. 

She has had two hospital stays this year in TX for double pneumonia, and the look on her face when she gets home from being in there a week gives me mixed emotions. It makes me smile, but I hate that she has to find the joy in being released from IVs and hospital beds. 

Doing all we can at home means morning and night time breathing treatments x4, Cough assist machines, nebulizers, BiPap machines, Pulse Oximeters, oxygen concentrators, suction machines, Joey Pumps and feeding tubes. These are the things that try to keep her healthy and alive. Without modern medicine, I would never have had the honor to see this little girl grow up and touch so many peoples hearts and lives. 

She is a miracle, who loves to bake, though she never eats anything; loves to dance, though she struggles to keep her balance; loves to sing, though she can't be heard. She doesn't she that she can't do these things well! She just wants to do it all! 

I am incredibly blessed and she is my little ray of sunshine that reminds me that even on my darkest days, there is hope! 

Thank you GOD!