Not for the faint of heart...

     First, let me state. Ivee's MRI was good. No changes, for the worse or better. She has no sign of Tumor and the other changes from surgeries and radiation are stable. I am unbelievably grateful to GOD, the hospital, doctors, financial backers and to those who pray for her!!!! She is my sunshine, and holds my heart. Emmett and I will often look at each other and say, "How did WE (you and me) end up with such a sweet child?" If you know us, you know why I say this. Not that Emmett and I don't have a caring spirit, but we constantly are pickers, teasers and sarcastic. This child doesn't seem that she belongs to us at all. God has something special in store for her...is just know it. I mean, look at how many lives she has touched in just 6 years!?

     For my local friends, we are looking for support. The Next Cookie for Kid's Cancer Event happening is April 27th in Bay Minette. All you need to know to support it by coming out, buying a t-shirt or sponsering is at this website. http://www.thecookiemomsters.com/events.php

     Now...I'm going to continue this post, but if you don't want to read about the hardness of this life, don't read on.

     Friends of mine from the pediatric cancer world (PCW) lost there baby to DIPG over a year 4 months ago. Another friend of hers from the PCW lost her child to DIPG, as well, a week ago. That family did something I don't think I could do.This mother and father, in their most desperate moment, the time where I'm sure only grief entered their thoughts, filmed "The leaving of Miette". It was not a film about her death, but about what happens after. It was that moment after their baby had passed and they had to pick her up and take her to the gurney to be taken away to prepare her for the funeral. I wasn't sure if I wanted to watch this video. I know so many who have lost their babies...I mean, look at the ^^angel wings^^ to the left of my screen.
     I have imagined that moment with Ivee too many times, and am never proud that I have. I don't want to imagine it...it is just something that happens. The thoughts always creep in. It mostly happens right after diagnosis...or during treatment...but mostly...when you hear that another child has died. I thought for a moment, wondering if I really wanted to watch. I thought about the parents and why they did it. I was for one reason and one reason only.

 ______We need a CURE!!!________

We need to find a way to stop this monster. I watched if for....

^^Aaron B.^^ -Ependy 2/20/13

^^Aaron G^^Ependy-12/7/11

^^Anderson^^ ependy-07/11

^^Ausman^^Ependy- 2009

^^Avery Ann^^-Ependy-2008

^^Brandon^^ DIPG-3-31-12

^^Brayden^^ Ependy-2006

^^Christian^^-Ependy-2008

^^Daniel^^ Ependy-3-22-12

^^Dorian^^*-Ependy2011

^^Erin^^Ependy- 2009

^^Fredrick^^ ependy -07/11

^^Johnny^^-Ependy-7/4/10 *

^^Justin^^-medulla-1/29/2012

^^Lanie^^ -Medulla-11/16/11

^^Lyssie^^ Ependy 10-2011

^^Myah^^*DIPG-12/6/11

^^Sophia^^Ependy-2006

^^Tyler^^ Medulla-2008

     I watched it for the 42 children diagnosed today with cancer. For the 7 children who will lose their battle today. I watched it for Ivee. We have to do something. Bring awareness to the for front. I understand why we see PINK everywhere, and honestly, there is a huge "market" for breast cancer. Research is so vital, that is why there is a greater chance for those facing breast cancer now. When will our children have that better chance? 

     THANK YOU to all who support Cookies for Kids Cancer, St. Baldricks, and St. Jude Children's Research Hospital. My gratitude can never be enough! 

     I am not going to share the video of "Miette leaving" with you. If you "feel" you need to watch the video you can find it on youtube. It is a very difficult video to watch and I honestly don't know what kind of people read my blog. I would hope most of you read it because you love and pray for my Ivee. BUT, I've had friends lives stolen from their blogs and someone creating a blog and living a false life vicariously through my friends griefs and struggles. I also don't want to share it on here for those who are upset by all of this. It is a very difficult road, and this family doesn't need any more grief from it all. They didn't really want to share this with the whole world, but I know MANY grieving parents who do what they don't want to just to try to save other families from having to watch their child suffer. 

     So, I apologize if I upset anyone with this blog. Blogs, however, are not necessarily for the reader, but for the writer. It really has been that for me, especially this post. I'm just sharing my heart. Today, it hurts. 

Keep praying, keep believing, and keep fighting!!!!

Ivee's scans

Ivee has her MRI scan in the morning. Praying her congestion stays away. Praying for clean/stable scan!!!!

New Scan Date

Yep...Those are my girls!!!! She does love that Brittney!!! I think the feeling is mutual!!

   

The date has been set. Brittney and I are taking Ivee back to Memphis for an MRI on March 25th. Right now, there is a stomach virus going around her classroom. We really NEED her well for this scan. Please, pray she doesn't catch this virus, that her 02 saturation will increase, that her secretions will loosen up and that any problems will just go away. And finally, pray for clean/stable scans! 

We had plans to meet with a pulmonologist while there, but they couldn't get an appointment with him/her until May, so that will not be happening. I have a pulse oximeter (check heart beats per minute and oxygen saturation) and have been keeping up with her stats. Her heart rate is a little high at times, but I believe that is due to the albuterol. Her 02 stats have been in the mid to low 90s. My concern, if Ivee's lungs are functioning fine and at close to 100%, would be the flattening on her brain stem that we've been watching since 2008. (This is the reason she had the scar tissue removal surgery in 2008, that lead to meningitis, that lead to a shunt placement). I am not a "worrier", but I do try to think things through and I do have concerns. My thoughts are that it is still because of the congestion to her sinuses that her numbers aren't around the mid to upper 90s. Still, these numbers are not common for her "normal" stats when we are in the sedation room every three months. I will be taking the oximeter with us to confirm that it is giving accurate readings (when compared to the more expensive and hopefully accurate machines of St. Jude).

 
                 

BUT, let me say. I know where my help comes from. My help comes from the Lord...the Healer, the Maker, Creator of me, you, Ivee, the heavens and the earth! So, I am asking God's hand of protection and his mercy upon her life and upon my heart. Scanxiety doesn't escape anyone with a severe medical problem, especially we parents of children who have fought the beast of brain cancer. The brain is the ruler of our body systems, and it is just scary to think about all that injury my baby's brain has endured. But, the miracle of her being here and doing what she can do makes me unbelievably grateful EVERY day! 

   

Trips, field trips, Special Olympics and Awards

Trying to play catch up on all that has happened. I have become laxed in my Blogging over the last few years, but it honestly takes a bit of time to sit down and do this! 

First I'll update then I'll share pics. As you read from my last blog, the MRI didn't happen. We are trying to get back to Memphis the last week of March, our Spring Break. She will see ENT and now a pulmonologist first. We always have respiratory problems, and we need to have a handle on it before any sedation. Please, pray that we can get the appointments, and that Ivee would continue to get better. She is still struggling with congestion, but it is sloooooowly getting better! 

I posted about some of the updates from our Memphis Trip. Of course, every trip to Memphis begins with a car full of "mostly" Ivee's stuff. This is what it is like to go just on a four day trip with her. (Of course, Pawpaw was tagging along this trip so the two small duffle bags on the end are his and 1 suitcase is mine)

 

 Ivee was VERY interested in the new construction at St. Jude. One of the employees who was having lunch next to where she wanted to go "look" was very engaging and interactive with her.

This is the new Proton Radiation area being built underground. I am so excited about this addition. Ivee didn't get to benefit from this new form of radiation, but so many kids will now be able to receive it here in Memphis when the construction is done. Right now, all the St. Jude patients needing this type of radiation are sent to Massachusetts and Jacksonville, FL. 

Ivee had the opportunity to meet some of the professional basketball team players from the Memphis Grizzlies. The Grizzlies support the on campus hotel facilities that we are privileged to use every time we go for a short stay. Here she is with Marc Gaslo. Every player was tall, but Marc stand 7' 1" and Ivee has never seen people so tall. She was not intimidated in the least!!!

I have waited for the day that Ivee would walk the halls of St. Jude unassisted. Even though she didn't have her MRI due to issues with congestion and O2 saturation, she walked herself into the MRI sedation room! 

I just wanted to share the new statue outside the Chili's Care Center. It is my favorite now of all the statues on campus. It is a representation of the Genome project. Isn't it just so fun!!!

Once we got back from Memphis, Ivee had a field trip to the zoo with school. We always have our "candid" bus drive snapshot!

I gave Ivee the digital camera (the cheaper one) and let her have at it. She's pretty good. She can take some good shots sometimes. Here 4 of her shots. 

Yeah...not all of her shots are great...love it!!! 

 

I love taking these trips with my children!!!

To end that week of school, Ivee participated in her first Special Olympics. It was a very emotional day for me. Looking around at all the special children there. Knowing the hearts of the parents of so many of these kids. The spirit of Hope was abounding. It was all I could do not to cry that day. She has come so far!!! She is a miracle! Here I watched my baby walk in front of her school banner as they passed in front of the stands. All I could think was, those initial doctors told me that with a 13% chance of survival...this day would never come. Well, my God said differently, and I watched my Ivee walk proudly, and though with a walker, she did it on her own! 

She stood there on the field with her classmates.

Her first event was the tennis ball throw (for age 8 and under) 

She won a third place ribbon! 

She was the most excited about the assisted run race. 

We had her hold her aid, Ms. Cheryl's hand, but we should have let her use that walker.

If she had used the walker, I think we would've had a first place ribbon.

But, she was proud of that second place ribbon. She is competitive, but she just likes to race. She made me race her, then Ms. Cheryl, then some of her classmates. 

I ended her day letting her take my camera. She took great pics, many I don't feel I should share since classmates are in it and I don't have permission from all of their parents. But, here's one she took of momma!

Today Ethan was chosen as the honor student for Art for the entire school. He and Brittney are extremely talented. Soon, I'm going to scan some their art and share it with all of you! 

I'm so proud of you Ethan.