Saturday, December 17, 2016

Where we are right now.....

Some updates on Emmie......

We've been home from the hospital for 9 days now and Emmie is 2 weeks, 4 days out from surgery. She is such a trooper. Her ability to work through her pain and overcome obstacles in her way is amazing to watch. It's also sometimes painful to watch. As her mommy, I want to do it all for her, and I can't.

Her aortic patch looks great! Dr. Coleman made her aorta the size it needs to be when she's fully grown, so she will grow into it, and not need to have it redone EVER!

Her right renal bypass looks good too. There's just this one area of the lower artery that looks like there is a blood clot. It's effecting the flow of blood to the lower portion of her right renal artery. So, she had to be put on a blood thinner to prevent the clot from getting bigger, and allow her body to absorb it.

Emmie had a check-up with her nephrologist (kidney doctor) last Friday. They were super impressed with her recovery. They were also very pleased with the fact that she's now only on one blood pressure medication and it's half the dose it used to be. We are monitoring her blood pressure and checking in with the nephrology doctor via email weekly. They do think its possible that after the blood clot in one of her renal arteries dissolves, her BP numbers could improve, maybe even enough to come off of all BP meds.

Here's where we are right now......

Emmie's blood thinner medication is an injection. This means Tom & I have to give Em a shot twice a day. She's handling this really well! Probably better than me or her dad! Thank goodness the needles are super tiny, and her medication does is very small, so it's a quick shot!

The word cancer and your child's name in the same sentence is something that shakes you to your core. It's everyone's worst nightmare. And its happening to my daughter. I don't even really know how to describe the feeling, and it's not something I would wish on anyone. We've had a few weeks to let this information sink in, and I can't say it's gotten any easier. I just about had an anxiety attack/nervous breakdown on Monday when we went to Riley Oncology for the first time. We had our first appointment with the oncology doctors. They are pretty sure she's stage 1, since her lymph node tested negative for the cancer cells. This will be confirmed on January 3rd when she has a CT scan of her chest. Emmie has what is called a Wilms tumor. On January 10th, Emmie will have a port placed in her chest, and she will receive her first round of chemo.

Chemo will be 18 weeks long. We will have to go to Riley once a week for an infusion. The regimen is pretty light compared to some. We will need to be there for an hour week 1, then week 2 & 3 will only take about 15 minutes. It starts over on week 4, and the 3 week cycles will continue for 18 weeks, or 6 cycles. She will finish chemo in May, and we will be having a very big PARTY!!!!

While non of us are happy about this diagnosis. We are very happy about a few things. One, we are so grateful that God intervened and allowed us to find this cancer before it spread. Two, we are so very happy that it is a "favorable" type of kidney cancer, and that she has a very high chance of being cured and going on to live a full life. It has about a 95% curability rate! Three, we are ever so grateful that she is doing so well!

Her recovery has been somewhat miraculous. She was wowing several doctors and surgeons in Michigan. One day while Emmie was still in ICU (the day before they moved her out) I asked the ICU team a question (can't even remember what I asked) But Dr. Tim looked at me and said "Well, we don't really know because Emmie isn't following the rules about how this is supposed to go." I said "Welcome to my world! She's been like that since birth!" He laughed and said "Good luck when she's a teenager!" This same doctor came into Emmie's room multiple times to talk to me. He was always amazed at Emmie's quick progress. The day we left the hospital, Emmie's surgeon, Dr. Coleman, looked at Em and said "Emmie, can I tell you something? You are the strongest little girl I've ever met, and I've operated on lots of little girls and boys, but you are the toughest, strongest one. I have no doubt that there are big things in store for you."

The journey has been long, and at times hard,and it's not over! But I look at the beautiful little girl sleeping beside me and I can't help but think God is cultivating her for something bigger than I ever could have imagined when I first held that little baby girl almost 8 years ago. I think he's cultivating me too. I'm not the same person I was before Emmie's first heart surgery. I'm not the same mom. I'm not the same friend, or wife, or sister. Each procedure, test, stent adjustment, surgery, diagnosis, medication change, doctor appointment, shot, blood draw, they all change me. Some of the change is for the good, but I know some of it has jaded me. It's a daily struggle to stay positive and keep my eyes and heart focused on the things that are important. I know that God has a plan for Emmie and me.

"For I know the plans I have for you" declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

I know this goes without saying, but please continue to pray us through this journey. Your continued support and prayers have gotten us this far. It is overwhelming to see the hands and feet of Christ at work though our friends and family and church family.

If you'd like to help us with the ongoing medical bills, a go fund me page was set up by Emmie's grandparents.

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