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.

Saturday, December 3, 2016

December 3rd 2016 Post-Op Day 5

My last update was Tuesday, the day after Emmie's big surgery. Emmie's surgery went great. All three surgeons were beyond thrilled with the outcomes from the surgery. They have basically attained the impossible by giving Emmie a somewhat "normal' vascular system.

Emmie continues to amaze the doctors, staff and her parents! She is the toughest little girl around. All the doctors have called her a rock star. She is so brave in the face of such huge obstacles.

From the beginning we were told that it would take several days for her digestive system to "wake up" because they cut the blood supply to several organs during surgery, they also move things around to get to what they need. The digestive system, particularly the pancreas, doesn't like this. What we didn't know is that the average time spent without food or water for these kids is about 7-10 days, and that pretty much none of them eat before that 7 day mark, and some kids are stuck in the hospital for a month or more waiting for their digestive system to wake up. We were also told to expect her BP to go back up and that she would need an IV blood pressure medicine within about 24 hours after surgery. We were told to expect her to spend a week in PICU.

What actually happened for Emmie wasn't anything like the events described above. The doctors are calling it amazing, incredible and unheard of. I'm calling it the power of prayer!!! Emmie came off the vent about 4 hours sooner than anticipated. From the beginning the doctors were impressed with her numbers. All the things they were checking such as creatin, BUN, potassium etc. All numbers were consistently improving with every blood drawl. Her BP stayed in the normal range day after day making the doctors eat their own words when she never did go on an IV blood pressure med. She has now started an oral BP med, and will go home on 1 med that is 1 time a day (compared to the 6 meds 2 times a day that she did before surgery). But the most amazing thing was that Emmie started having "digestive' sounds on Thursday, only 3 days after surgery. She had a bowel movement on Thursday afternoon too! So her surgeon said ice chips and gum on Thursday were fine. On Friday she got to start a liquid diet! All the ICU doctors were amazed. She's 4 day's post op and she's on a liquid diet! One ICU doctor told me "Emmie's not read the rule books about how this is supposed to go! She's doing everything ahead of schedule!" Her nurse on Thursday also told us that she has NEVER had a "re-vasc" (what they call kids who have vascular surgery similar to Em's) kid ask to get out of bed. She says these kids are in so much pain they NEVER want to move. Emmie was asking to get out of bed!!

Through all of this, we saw God's hand on our daughter, and on us. We felt the power of prayer. Things I was asking people to specifically pray for, and things I was specifically praying for were being answered. Was it difficult? ABSOLUTELY!! I cried, Emmie cried, Tom cried. It was hard. It's still hard. 

In my last post I said "now we start the next phase of hard. Because, really every phase of this has been hard." What I didn't know, was that there was going to be a whole new level of hard. We were completely in shock when our team of doctors and surgeons all came into Emmie's room together on Wednesday evening at 5:30pm and relayed the most difficult news I've ever heard. "The mass we removed from Emmie's kidney was a malignant tumor called a Wilms tumor. It is a form of cancer......." To be honest, I don't think I heard much else. I heard malignant and cancer, and I heard my child's name in the same sentence. Every parents worst nightmare. The doctors were truly just as shocked as we were. No one saw that coming.

Tom and I took about 24 hours to let this new information process in our brains. We cried a lot, and we prayed a lot. We told only immediate family and our pastor and a few close church members. Once we knew when we were meeting with the oncologist, we asked for prayer from the church elders. Waiting on that meeting seemed like an eternity. In the hours leading up to it, I became more anxious. I wasn't sure I wanted to hear any of it, yet I knew I had to. The oncologist gave us some positive news though, at least as positive as it can be after receiving a cancer diagnosis. Emmie has what is called a "favorable" form of kidney cancer. The believe they got all of the cancer by removing the upper pole of her left kidney, however scans will be necessary to ensure that is the case. The vascular surgeon told us that she looked, rubbed and felt each of Emmie's organs to make sure they all looked and felt normal. She did not see anything alarming. Everything looked just as it should. The urologist is quite confident that he got the entire tumor and left nothing. He also took a biopsy of a lymph-node while in surgery, which came back negative! They believe she is Stage 1 or Stage 2, which has a 95% cure rate. If they found spots in her lungs, which they do not think is the case, she would be considered a Stage 4. Even at Stage 4, this type of cancer has an 89% cure rate. Regardless of the Stage they put her at, and even if her scans prove that there is no cancer anywhere else in her body, she will still go through 6 months of chemotherapy. While I can't stand the thought of it, I'm happy that what she has is treatable and curable. And in the last several days I've heard of multiple success stories of kids who were diagnosed, been cancer free ever since and are now in their 20's. Even her surgeon told us yesterday that we are now a part of her family. She want's pictures and updates of Emmie doing sports as a teenager! She said I have no doubt that Emmie will go on to do great things as an adult. 

Another way God has showed himself to us in these hard and stormy waters is that quite possibly Emmie's deformities saved her life. Wilms tumor is a very slow growing cancer, and it's quite possible that it has been there since she was 4 years old. At the age of 4, we had scans done of her kidneys and renal arteries, in the hopes that they could stent her renal arteries. They could not be stented, but those scans revealed a deformed upper pole left kidney. The urologist actually used the term bumpy and cauliflower like. They thought it was just deformed tissue, which is also what the surgeon's at MOTT's thought until they opened her up. It has grown since she was 4 years old, but not that much. The doctors say it's possible that the deformed tissue and lack of blood flow to the kidney could have prevented it from growing. I think it was God's unique way of protecting Emmie's body.

I have said all along that I felt God brought us here for a reason. Now we know undoubtedly so! I thought we were here to get Emmie off meds, which does seem to be happening, but now I know we are here to find a cancer that might not have otherwise been found. The surgeon who asked to pray with us before surgery was also the surgeon who had to tell us Emmie had cancer. He prayed with us after telling us that horrible news. Our night nurse that night was also a christian who goes to church with the surgeon. He also prayed with me in the middle of the night. God has seen me at my darkest worst hour, and he lifted me up in the midst of my pain. He surrounded me with complete strangers that were able to console and pray with me.

Obviously the next 6 months or so aren't really going to be any easier on us or Emmie than the last few months leading up to this point. In fact, I'd say we are entering something even more difficult than the phase we are leaving, however, I know my God will not leave me or forsake me. He will not leave Emmie either. We will get through this together and with the support of all of you.

As for right now, Emmie is doing better than expected. We moved to the renal floor yesterday. (3 days ahead of schedule) She's been up and moving around today, doing crafts with her sister and cousins. She's eating! Not much, but she is eating. Her pain has been pretty well managed. We are transitioning her now to oral pain meds and weening her off the IV meds. We will still be here for at least another 5-7 days. She will have some imaging studies on Monday to ensure the surgery was a success, so we will have new images to compare to the ones we got in October. I'm excited to see what that will look like. Emmie is enjoying all the gifts and surprised that have been brought to her.

Please continue to pray for us. We are entering a new phase of hard. As we get more info about the stage of cancer, treatment plan & timing we will pass it on! Thank you for your continued love, support and prayers!

I can do all things through Christ which strengthens me. Philippians 4:13