Saturday, May 24, 2008

Big changes

So this past Wednesday (the 21st) was Chunks-a-lot's MRI scan and it was also another day in my life that I am sure I will never forget. Sitting in the room at the Neuro-oncologist's office right after her scan was completed, I found myself full of hope for a good report. Yet as the doctor walked in, I could immediately tell something wasn't right. She didn't address the results of the scan right away, but instead started playing with Chunks-a-lot and asking us a lot of questions. I could feel the sweat in my palms accumulating as time suddenly slowed to an agonizing pace. And then, she said it.....almost in slow motion, her tumor had grown. I always thought I would emotionally lose it at this news, but instead I found myself thirsty for the facts. I think when I accept the bad news in a practical way, it helps divert my attention from the hysteria of the situation. Not only had the tumor grown, it was blocking off her right ventricle and was thus causing a huge backup of spinal fluid. The right ventricle had actually crossed the mid-line of her brain and was pushing into her left ventricle. They kept asking us, "Wasn't she displaying symptoms of pain or irritability?". Hmm....ya think?? As though I hadn't alerted them to the seizures she had had a couple of weeks back, or the extreme change in mood and problems with balance she had been exhibiting. And what was their answer to this at the time---to put her on chronic pain medicine. Sometimes doctors, as well-meaning as they might be, just frustrate the heck outta me. But the past is the past, so I'll move on. They admitted Chunks-a-lot to the hospital immediately and she had surgery the following morning to correct the problem with her ventricles. The surgery lasted 3 1/2 hours, which proved to be the most excruciating hours of my life. Knowing the long list of possible complications and risks, I was terrified that she might not even make it through the surgery, but she did....thankfully she pulled through beautifully. They were even able to finally biopsy the tumor, so in about 6 days we will be able to put a name to this monster. Another waiting game, but we're getting used to it. She was discharged directly from ICU the day after her surgery because she was recovering so well. There's so many stories that I could write about from our experiences with her in ICU, but then this post would probably take on the form of a novel, so I'll save those for a rainy day. The important thing is that she's home with us now and doing well considering that she just had major brain surgery. She is up and walking and seems to have developed a slight limp on her left side, but this could go away with time. Regardless, it seems a minor complication considering the more serious things that could have arisen from her surgery and biopsy. So now we are left with the reality that our little baby girl will have to start chemotherapy soon. We are about 98% sure that we will be heading to St. Jude's Children's Research Hospital in Memphis, TN for her treatments, as they have some of the top doctors in the world on their Pediatric Brain Tumor Team. Although this is certainly in her best interest, it will take quite a toll on us as a family. Lips (hubby and daddy) will not be able to stay with us at St. Jude's. He'll have to stay on this side of things to keep his job and make sure the bills get paid.....after all, at some point we want to have a house to come back to! Fortunately, Chocolat (momma and nannie) will be making the venture with me and the kids to Memphis, which I am sure will prove to be an enormous blessing. Even so, this is such a huge step in our lives. Nothing will ever be the same for any of us. It's like Chocolat said, how does life ever go back to normal? How hard is it going to be to have to watch my daughter go through Chemo and all the awful side effects that come along with it? How do I explain to my son why his sister is so tired or why we can only see daddy on the weekends? Where do I even begin? I have tried endlessly to make sense of all of this....to somehow rationalize this in my mind. It's just not possible. So I am left with the reality that God must see something in us that we don't think we are capable of. I keep pulling from my reserves, wondering when they're going to run out and amazingly Christ keeps allotting us grace in the measure that we need it. God keeps using people in our lives to pick us up and dust us off just when we don't think we can walk another step. And so for these reasons, I have been humbled in my relationship with Jesus. I don't profess to know God's plan in all of this, nor do I have any idea how all of this will turn out, but I can tell you one thing's for sure, God IS in control. And yes, He might take her from us far sooner than seems fair, but at least we have the promise of knowing that she is dancing with the angels instead of suffering on this earth. Whatever her future holds, the ways that God has used her to not only touch people from miles away, but to touch and change my entire family is simply amazing. For I have been given the most beautiful treasure in the world, the opportunity to watch Christ use my daughter to further His kingdom. How many people can say that. I could live till I'm 100 years old and say that I might have brought a handful of people to a relationship with Jesus, but already in her 11 month existence, I can guarantee you she has touched more than just a few lost souls. For this, I am eternally blessed. She is chunky and giggly and the most beautiful little girl I have ever laid eyes on and I will love her for as long as God allows. And hopefully I will always be able to honor her battle and suffering by being the role model for Christ that I need to be. Hm....I seem to have run out of things to say, which is amazing because I never thought that would happen. I guess when you're done....you're done

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