Friday, June 27, 2008

In the eye of the beholder

Gearing up for another round of Chemo has left me feeling as though I'm gearing up for another round of complete exhaustion. Being in a hospital for days and nights on end makes you come face to face with the reality that, yes, your child is sick. We went to a pizza party at the Target House (where we're living) last night and seeing all the cancer-stricken kids just filled me with anxiety. Chunks-a-lot has been so fortunate thus far to have not been physically affected by her cancer. She can walk, babble and carry on like a very normal one year old. She doesn't wear the consequences of her illness in an obvious external way like a lot of the kids here do. And while that should be encouraging, it actually makes me nervous. I guess I'm wondering if what I'm seeing in other children is the future that's in store for her. I think about how wonderful and amazing it is to watch your child blossom before your eyes; to be there, cheering them on as they reach every milestone and pass it with flying colors. And then I wonder how heart-wrenching it must be to have to watch your child regress. To go from walking to a wheelchair, from talking clearly to stumbling on every word, from functioning like a bright child to struggling to perform daily tasks. There's this part of me that only wants to remember Chunks-a-lot the way she is now. Happy, smiling, giggly and thriving daily. She is so full of joy and mischief and kills me to think that soon she might be only a shadow of who she is now. But then I see these parents with their kids, who are so obviously sick, and they don't seem to even realize how "sad" their situation seems from the outside looking in. They look at their kids like they're perfectly normal. And then it hit me--I'm already one of those parents. People pass me in the store and I can see it in their eyes, "Bless her heart.", but all I see when I look at my little angel is a precious, chunky baby. I don't even notice the two huge stitched up cuts on her head or the shunt that runs under her scalp. It's normal to me now because it's become a part of who she is to me. And I think that's how all parents are, regardless of how your child acts or looks, you only see the part of them that makes them special and makes them who they are to you. So as much as I'd like to only remember Chunks-a-lot for the way she is right now, so physically and mentally intact, what she'll go through and the external consequences it might have will only become a part of who she is. And whether you be watching your child progress from milestone to milestone or regress from functioning to struggling, they're still precious in your eyes. Even now, as I'm waiting for this second round of Chemo to begin, this "new" life is already starting to feel normal. And I'm sure people are out there thinking about us and cringing as our situation seems so dire. And as hard as it all may be, these are still memories that are making a history of who we are. My daughter may be sick, but I don't see that when I look at her. I see a child who is extremely brave and filled with more courage at the age of one than I have at 26. So as we're embarking on this next round of Chemo, I've realized that while her hair might fall out and others might see a sick child with a bald head, I'll still only see her fighting spirit and her sparkling eyes. For no matter how much her cancer takes away from who she is right now, it can never take away who she is to me. She's feisty, she's precious and she's the most beautiful child I've ever seen. And, sick or not, "Chunks-a-lot" is who she'll always be to me.

Sunday, June 22, 2008

Chemotherapy and psychotherapy

So yesterday was Chunks-a-lot's first day of chemo and I'll be honest, I was terrified. The drug they are using for this first infusion is called MTX and it is a bright yellow liquid. I broke out into a cold sweat watching the fluid travel up into her just gave me the creeps for some reason. There's this part of me that wants to grab her up and run away, I'm not really sure where to, but somewhere far away. Even though I know that the Chemotherapy will help her, I also know that it will cause a lot of unpleasant side effects that will make her life hard. I guess I just want to rescue her, but I can't....and that breaks my heart. There's always this smell in hospitals, like a really strong oxygen smell mixed with some sort of weird spaghetti odor. That probably sounds weird, but it's just the only way I can describe it. As we were walking down the hallways of the second floor last night, dragging an IV tower full of bags behind a very active one year old, I couldn't get past that smell. Everytime I bent down to hug Chunks-a-lot or play with her in the floor, I could smell it in her hair, on her clothes....and for some reason it made me mad. It was like this weird sense of "leave my daughter alone!". And I don't think it was really the smell that was making me angry, it was just this interruption in her joyous childhood. This lingering stench that I just can't seem to get rid of. The cancer that keeps dividing, multiplying and haunts me daily. I keep walking past these little plug holes in the walls that say "Attachment for Nitrous Oxide"....I have been searching for the line that plugs into this port but my efforts seem to be in vain. I have jokingly asked the nurses if I can hook myself up for a couple of hours to escape this mental trauma, maybe provide myself with some psychotherapy while Chunks-a-lot has her chemotherapy. Yet as hard as all of this has been on me, it hasn't seemed to slow my little chunk down a bit. She has been like a little ball of joy since we got here and the entire hospital now knows her by name. I actually walked in the front doors of the hospital this morning after running back to our housing for a shower and the security guard at the front desk said, "Hey, McKaylee's mom!". I feel like my daughter has moved us to a celebrity status. So for those times where I can't find it in myself to hold back the tears any longer, she comes bouncing down the halls calling out, "Momma!" and my sadness disappears. God has given us such a wonderful gift of happiness, wonder and joy all wrapped up in this precious little girl. And as hard as it might be at times, her resilience never ceases to amaze me. I have learned so much from her bravery and her strength and it seems weird to learn life lessons from your one year old child but I think that might be the way God intended it. So the Chemo is about to be turned off and this first page in a never ending story will be complete. What have I learned from this so far? One, always bring an ample supply of narcotics and two, love your children endlessly. Even on those days where they irritate you so badly that you don't think you can stand it; bend down, look them in the eye and lose yourself in the essence of what makes them babies. Their world is so innocent and free from inhibitions and we should envy that....I know I do. Life is short, so enjoy it while you have it. Alright, I'm off to find that Nitrous Oxide again....

Friday, June 20, 2008

Hope in the shadows of darkness

I don't think this situation could be any more surreal than it already is. It seems that around every corner is not just bad news, but the worst news possible. At first, Chunks-a-lot's neuro-oncologist here at St. Jude's told us that she had a 50/50 chance of overcoming this cancer. Although 50% isn't the type of statistic I would've hoped for, it was still enough for me to cling to with hope. But today, things had changed. All the doctors that deal with childhood brain cancers had met yesterday to discuss cases and Chunks-a-lot's medical file was amongst those reviewed. After much discussion, they have now told us that they don't think she has a very good chance of beating this tumor. His exact words, "I know I had previously told you that it was 50/50 but for her I'm going to have to say that the percentage would be much lower. She doesn't have a very good chance of surviving this cancer.". I felt like my entire soul just floated away, up into a world where none of this existed. For a moment I sat motionless, not even able to produce any sort of response.'s a new state of being that I have recently discovered. To have pain and agony stabbing at you constantly, deeper each time, yet never really feeling the wound. For one of the first times in this journey, I felt hopelessness creeping in. "NO God, do not take this child from me. I love her, I adore every part of her, I relish every second of every minute I have with her. Where are you in this? How can this be her future?". I found myself pleading with God, begging Him for the relief that I have sought so often in this journey. I wish I could tell you that He answered me, but He didn't. And for the first time in a long time, I felt alone. I think about how hard it is to grow up in this corrupted world and I wonder if God is just saving my little girl from all of that. Or I wonder if the impact her life is having on people across the nation is worth her suffering. And yet who am I to decided what is "fair"? All I know is that it hurts, it hurts in a way that I have never felt before in my life. She seems so happy, so healthy and completely oblivious to the cancer that is growing in her body. Sometimes I wonder if she's scared like I am....and then I see her giggling at the nurses as they poke at her belly and I realize that she's clueless to the tragedy that surrounds her. So for her sake, I'm still listening for God's answer, for God's timing and for His grace to engulf me. Today was hard, maybe one of the hardest days thus far, but the story doesn't end here. My sadness has overwhelmed me but I can't let this be the day where I give up. So I'll still stand by her crib at night watching her chest rise and fall and thanking God for each breath. I'll still watch every step she takes, knowing that it's by God's grace that she is still doing this well. And I'll still kneel by my bed each and every night and beg God for a miracle for my little McKaylee. I won't give up, I can't give up....I still believe

Wednesday, June 18, 2008

St. Jude's...round one

So we are finally here at St. Jude's and it is so amazing. I guess I thought that being here would provide some sort of relief and although it has, it's also provided a new sense of reality that I hadn't yet experienced. I have now been face to face with the reality of childhood cancer. I walk down the halls and see kids, whose lives should be filled with baseball games and princess parties, and instead they're wearing masks and have gleaming bald heads. I cannot escape the reality that this is Chunks-a-lot's upcoming future. You would think all the chemo treatments, radiation, surgeries, etc. would slow these kids down, but they don't miss a step. They're the happiest children I have ever been around. There are some that seem tired or constantly plagued by a sensation of coldness, but for the most part this place seems to be nothing but a world filled with hope. Hope for the hopeless...that's the message that keeps getting repeated. I no longer feel the piercing gazes of onlookers trying to figure out why my daughter has two huge cuts on her head, as the physical consequences of cancer are a way of life here. We're no longer the "odd man out", we're just part of a community of families that have the sweetest, but the sickest, children. It's encouraging to meet others who are struggling with the same daily battles, the same medical trauma...and yet it's equally depressing. You can't escape the ugly in all of this, the looming statistics, the fatality of childhood cancer and while that is extremely hard, it's also just another hurdle to jump in this journey we are traveling. I've just learned to swallow that lump in my throat and I've found myself constantly telling God, "Give me grace...give me peace...give me strength.". I won't say it's been easy, because it hasn't. But this place has provided a haven for my family and the best care for my very sick little girl. So here we go, one step ahead....sometimes two steps backwards, but then always another step ahead towards hope. She will beat this, we will beat this.....together, as a family. And hidden in this tragedy are moments and memories that I will hold close to my heart for a lifetime. I thank God daily for this wonderful place and for all the doctors that continue to provide my little girl with the best treatment possible. I look back on everything that has occurred thus far and I can see how God clearly paved the way to St. Jude's. And I find hope in knowing that tomorrow might be a little harder than today, but I'm not alone in this. For standing by my side are friends, family, doctors and most importantly Jesus Christ. And from day to day, I still proclaim that I believe in a miracle, a COMPLETE and total miracle of healing for my precious little girl!

Tuesday, June 10, 2008

A long road ahead

So by now, I'm sure everyone has heard the latest news about Chunks-a-lot and even though it's all right in front of me, I feel like I'm watching this from a distance. Sitting in the room with the neuro-oncologist today was like a surreal moment. A Grade three Anaplastic Astrocytoma was the final diagnosis....and it only carries a 50% survival rate for her age group. How do you wrap your head around that statistic? Hearing that your child has a 50% chance of surviving is so unbelievable...I'm still in shock. We're leaving tomorrow afternoon for St. Jude's hospital and as I am packing all of our bags, I began thinking---how do you pack your life in a suitcase? We'll be gone for the better part of a year and I don't even know where to begin packing for that type of excursion. You make a list, toothbrush, toothpaste, shampoo and it just seems so ridiculous for some reason. Where is the list for a one year absence from home? I feel like I need a separate suitcase just to bundle up my emotions in. Fear, apprehension, anxiety, sadness, anger, I could go on and on. I sit here and think about how hard all of this is going to be, all the chemo and the side effects it will bring, all the ups and downs, and it just numbs me. Someone actually asked me today, "What's wrong? You sound so normal.". Yes, well someone has just put a timeline on my daughter's life and clued me in to how terribly hard the next 12 months of my life are going to be; yes, there is a large part of me that's not really here. I almost feel like a turtle who has left its shell and that's all that's left, just the tough outer covering, nothing inside. Maybe that's just some type of survival method kicking in, I'm not sure. Then I see my precious Chunks-a-lot, babbling and walking around as though she hadn't a care in the world and it breaks my heart. For she hasn't a clue to the hardships she will have to endure in the upcoming weeks and months. She's so little and just doesn't seem right that she has to go through all of this. It breaks my heart, it absolutely devastates my soul that my little angel has this terrible cancer. I hate this tumor and the cells that are feeding its growth, I despise the pain it brings her and how much it has interrupted her childhood. She will celebrate her second birthday in a hospital and that makes me hurt beyond words. One day I'll look back on this as a memory and there's a part of me that is jealous of that. I've already been pulling from my reserves on strength and hope and I wonder where that extra strength that I'm going to need is going to come from. I am reminded of a sermon I just recently heard from Dr. Charles Stanley in which he preached over and over again, God's grace is sufficient. And so it has been and so it will be. I refuse to give up on this, I refuse to lose hope, I refuse to falter in my faith. Jesus Christ, my Savior, WILL pull us through this and He will be there to hold her hand and mine each step of the way. This is when life gets serious and when all of our faith gets tested. I can only hope to come out of this a stronger person in Christ. So for all reading, regardless of your spiritual beliefs, get on your knees and pray for this little girl. And for this next sentence, it only seems right to use her real name: I believe, we all believe, in a Miracle for McKaylee.

Monday, June 2, 2008

Heartbroken and healing

Last night was a nightmare....only I was awake and it was real. I couldn't matter how long I laid there with my eyes closed, I just couldn't seem to turn off all the thoughts that were invading my mind. Chunks-a-lot started stirring at around midnight and soon began grabbing her head and crying in her sleep. It seemed like every hour during the night passed at a torturous pace that almost made me feel crazy. Finally, at around 4 am, I drifted off only to be awaken a few hours later with the start of a new day. As the morning began, I quickly made my daily phone call to the pediatric oncologist's office hoping that the pathology results for Chunks-a-lot's tumor had come in. Even though the waiting game through all of this mess has proved to be the hardest part, I somehow found myself terrified to finally put a name to this horrible monster that has caused such havoc in my little girl's body. The nurse was extremely reluctant to tell me the diagnosis and the more I pushed the more she beat around the bush. A diagnosis had been made, but they wanted confirmation from the pathologists at John Hopkins before they released the results to us. I felt almost violated as a parent. How is it right that these people know more information about my child's health than I do? I pressed further and finally got a piece of information out of them that I just really never thought I would hear. Cancer. A word....just a word, but a word that almost led me to a complete emotional breakdown. How is this can it be that just when it seems things can't get any worse, they do. I feel empty, void, almost like just a shell of a human being. It's just 6 days before her first birthday and instead of looking forward to this wonderful celebration, I am completely devastated. I had this conversation with God and it went something like this, "Don't you know that I'm almost used up? I almost cannot humanly take this anymore. Where are you?". The answer I received was not in the form of a booming voice or a quiet whisper, but instead just a gentle feeling that came across me. Yes, He knows....He's here with me. He's holding my hand and filling my heart with love. I might feel as though I have nothing left to give and that's fine because that's where Jesus comes in and carries me the rest of the way. I am emotionally wrecked and heartbroken, yet I have this eerie sense of peace that I doubt I would humanly posses on my own. That's the power of Christ in all of this. And this isn't a "church answer" or a "christian response", it's the absolute presence of Jesus Christ alive in my soul. I am now faced with this horrible reality that once seemed like such a distant possibility in the long list of things that "could" happen. I look at my precious little angel and her beautiful face and I know that Jesus loves her ten times more than I could possibly imagine. It seems cruel for her to have to endure this but that's my human perspective. God is her father and we can't possibly understand how He is working in all of this, but He is. This can't be where we give up, this is where we get serious about trusting God. She's my little girl, but she's His daughter too. I trust Him with her life, with her heart and her future. That was my next conversation with God, "She's yours. I will fight for her, but I won't fight against the One who made her.". And again, I felt His arms around me.....cradling me in peace, restoring me with hope and filling me with His spirit.