Saturday, August 12, 2017

You've got to know where you've been to know how far you've come



Sometimes you have to know where you've been to know just how far you've come. Tonight I ran across these papers. I keep them in a clay jar that I have recipes in, so every now and then, I see them in there and I pull them out to look at. 



The first one was printed out by Emmie's nurse on the heart floor in March of 2010. I can still remember that day like it was yesterday.  I remember looking at that piece of paper and lots of thoughts running through my head, I didn't say anything out loud, just stared at it. I was the mom that couldn't remember to give my kid a vitamin. When they were sick and needed antibiotics, I would forget to give it to them! I'm staring at this med list, knowing my daughters life depended on me being able to follow it to a T! The pit in my stomach was indescribable. How was I going to do this? I desperately wanted out of that hospital, I wanted my life to go back to normal, I anted Emmie's life to go back to normal. But I didn't think I could do it, I wasn't sure I could handle this, maybe the hospital was the best place for her. Those thoughts of doubt that creeped in, I know was Satan. But in the quiet moments I could hear the voice of my Lord, telling me to be still and know that I am God. He gave me this child, and he would give me the strength to care for her the way she needed to be cared for.

Fast forward 7 years! If only I knew then what I know now! Normal? What is that anyway? HA! We found a new normal, one that involved lots of trips to Riley, and now MOTTS. A normal that included lots of medication, a back brace, surgeries, tests, scans, ultrasounds, xrays, MRI's. The latest also includes oncology appointments, and cancer scans. But I'm reminded every day of how unique Emmie really is, and how God knitted her together in such a fabulous way that no one can predict what will happen next....... or what she will do next, much less what she will say next!

Emmie is doing fabulous! She is cancer free!! She has not had to do chemo or radiation. She is getting scans every 3 months, and as long as those remain clear, she will not have to do treatments. She is currently off ALL medication!!! That is the most amazing thing ever! It was a day I never thought would happen! We were all so thrilled for her! 

She is seeing her back doctor for scoliosis. It has gotten worse, she is getting fitted for a new brace, and having an MRI of her back in a few weeks. We will also see the neurosurgeon again about tether cord surgery, which will hopefully happen in November. After that, she will need one more back surgery to correct the curve in her back, and then hopefully we will be all done with surgeries!

She continues to have check-ups with cardiology and nephrology. All seems to be going fine with her kidneys and heart. Her aortic stent will need adjusted again, and that is something that will continue to be adjusted as she grows.

She had her 6 month post op check up at MOTTS a few weeks ago and they were very pleased with all of her progress! She was given the all clear by her vascular surgeon! Praise God!

All in all, things are great! Will she continue to need doctor visits and surgeries, yes, but when I look back at just how far this little girl has come, I'm OK with where we are. She is my warrior princess! She amazes me every day!!!

Thank you for following us on this journey! And thank you for the support and prayers!

Saturday, February 4, 2017

7 years after the first surgery....



This is what I wrote last year on this day. It is now 7 years.
February 4th

7 years ago today at 7:30am, I handed Emmie (my 12 month old baby) to a nurse, watched them walk away, and balled my eyes out! That was by far one of the hardest and most challenging days of my life. I had no idea that we were stepping into a new world, one that comes with lots of ups and downs, medications, dr appointments, blood pressure checks, blood drawls and procedures. I thought Emmie was having a one-time "fix", and within a few weeks, everything would be back to "normal". (What is normal anyway??)
2-4-10, was just the beginning of a lifetime journey for Emmie and our family. As I look at my posts from that day, it was clear that things didn't go as planned from the beginning. Things didn't go as I had planned, or the doctors had planned, but they did go as God had planned. I have never felt more comforted, more held or more peace from God than I did on that day and the days to come. That doesn't mean I'm ok with what has happened and continues to happen to my baby girl, but I'm at peace with it. I hate the struggles in her life. I hate the medication that she takes, I hate the continual dr appointments and surgeries, but I don't hate God. He made her this way for a reason, and I trust in that. He loves her more than I do, and I trust in that.
2-4-10 was also the day Elise was born. On the other side of the world, in a remote area of China, called Poyang, Elise was born. While I was stressed out, a crying emotional mess, God was blessing me in ways I didn't know.
I serve an awesome God! And I trust in his word.

Just when I think I'm beginning to get a handle on things, we get another curve ball. Even looking at what I wrote last year, I realize how much has changed. Last year, we didn't know Emmie was going at have a 10 hour surgery in Michigan. We didn't know she was going to be diagnosed with cancer. We didn't know just how vast her renal arteries, aorta and kidney deformities were. It still makes my head spin when I really think about everything that has happened in the last year. 

But one thing remains the same. I still believe and trust in God. We trust Emmie in his care. I truly believe he lead us to those doctors in Michigan, and they quite possibly saved her life, or at the very least altered the path of her future. She has a bright future ahead. Does she require more surgeries? Yes, at least 1 and maybe 2 for her back. She will also possibly have her aortic stent adjusted, and possibly a new one inserted when she has reached her adult height. She still requires lots of doctor visits and lots of monitoring, but she only requires ONE medication!!! God has brought her and us again through some very dark and scary times. And I felt the same way during this surgery and recovery as I did 7 years ago. I have never felt more comforted, held and at peace than I did during those 2 weeks. I'm still not ok with it. I still do not like it, but I am at peace with it, and I do not hate God for making her this way. Time will tell, but I know God is molding her into something great, and all of this medical stuff has something to do with it. 

Every time I look at the miracles of Emmie and Elise's lives, I am reminded of God's hand in my life. He blessed us with this beautiful baby girl on the other side of the world, and it was the very day we were beginning this life long journey with my other beautiful baby girl. Only God can orchestrate such an amazing masterpiece. You can't make this stuff up ,and you certainly can't plan it yourself!

My updates from February 4th 2010....

Saturday, January 28, 2017

2 Months Post Op and So Much Has Happened!

Today is January 28, 2017. We are exactly 2 months out from Emmie's major vascular surgery, with aortic patch, renal reconstruction and nephrectomy. So much has happened in the last two months. At times it feels like a roller coaster, so many ups and downs! Well let me tell you, I'm ready to get off the ride!

The biggest and most exciting good news we have is that Emmie has not started chemo!! We sat down with her oncology doctors the first week of January, fully prepared to hear the details of her chemo regimen. Instead we heard such amazing news. Truly an answer to prayer. "Emmie does not need chemo right now!" It seems that after reviewing Emmie's case in much detail, which included a meeting of the minds (where the entire oncology team sets down to discuss difficult cases, this is not the first time Emmie has been the topic of one of these meetings, and not the first time she has been called a "difficult case"), looking back through Emmie's scans that go all the way back to February 2010, and sending her records & pathology reports to a Wilms tumor expert in D.C., the conclusion was this.......
   
Emmie's Wilms tumor has likely been slowly growing on her left kidney since the age of one. In 6 years it had only grown to the size of a baseball, and never spread outside of that one tumor. We believe that God protected our daughter in ways only he can do. That portion of her kidney received very little blood due to the tiny thread like artery that was feeding it. Lack of blood flow, meant lack of growth. It also is what kept doctors from suspecting the "suspicious" looking upper pole was a tumor because her blood work never showed the typical signs they look for when cancer, or an infection, is present in the body. Wilms tumors are also typically diagnosed between age 2 and 4, and they are almost never seen past the age of 8. Given all of this info, the oncology doctors decided not to start chemo right away. We are instead, scanning Emmie every 3 months for the next 2 years. If something shows up, we will start chemo and radiation immediately. At the 2 year mark, as long as nothing has showed up in her scans, we will scan every 6 months until she has had 5 years of clear scans.

Its hard to put into words the feeling of joy I had when I found all of this out. It's also hard to put into words the gravity and weight I felt when I thought I was going to put my daughter through chemo. These are emotions a mother doesn't prepare for. You aren't given a manual about babies and kids when they are born, and if you were it certainly wouldn't include a chapter on "how to handle EVERYTHING when your child gets cancer" because you just aren't supposed to have to do this. But here we are, killing it!

In other news with Emmie.....

Her blood pressure continues to stay at a normal level, in fact lower than it used to be! She's averaging 97/54. We used to try to keep her around 110/70 and that was on 6 medications. Now she takes 1 BP med, and it is 1/2 the dose she used to take. We are hopeful that at her next appointment with her nephrologist, they will let her come off the med and see if it stays under 110.

Her blood clot is gone! YIPPEE!!! No more twice a day shots!

The renal stent that was placed during surgery was removed a week ago. She did fabulous during that procedure!

Her iron is low, which didn't surprise me. She did this after her first heart surgery too. She has a tendency to not eat a lot but drink a lot of milk. Too much milk and not enough food causes the milk to absorb the iron. So, she's taking an iron supplement, which is helping a lot with her energy levels. We are hoping her body will reset itself by April and she will come off the iron then.

Emmie went back to school! She made it through a full week of school this week! YAY! She's still on a lot of physical restrictions. She's not allowed on the playground, and she can't do PE class. But over all, she is doing really well! And I think she was even happy to be back in school! (If you know Emmie, you know she's a home body and wants to be home schooled! However, she missed her friends!)

Going forward, Emmie will continue to be seen by oncology for 5 years. We are praying for clean scans for 5 years! She will continue to have nephrology and cardiology checks every 3-6 months. She will also follow up with her surgeons in Michigan at the 6 month mark, and the 1 year mark.

The next major item up for Emmie is having the tether cord surgery, which will hopefully correct some of the scoliosis. That will probably take place in the fall. We have also started the genetic testing required to find out if Emmie has neurofibromatosis. If she does in fact have this, then there will be additional doctors and scanning done to check for other tumors. However, typically with NF the tumors are benign.

Even though I would like off the roller coaster ride, I know this ride is far from over. Emmie has a life time of ups and downs medically, and I will never leave her to ride alone. Just as God will not leave either one of us. Deuteronomy 31:6 Be strong and courageous. Do not be afraid or terrified of them, for the Lord your God goes with you; he will never leave you nor forsake you.

Thank you for reading, but more importantly thank you for the overwhelming support! We have had so many people bring food, help with kids, help financially, and praying for us, the support has really been a testament to God's people working together as the body, hand and feet of Christ. Thank you just doesn't even feel like enough! Please continue to pray for us as we move forward through all of this medical stuff! Pray for clear scans and answers for Emmie.
 Emmie at Riley Hospital the day we found out that she would not be doing chemo!

 Emmie with her daddy and sister, Elise, going to the Princess Ball
(AKA, daddy-daughter dance)

Emmie turned 8!!!! The magic number for Wilms tumors to not return!