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

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