Courage for Kennedy – Journal


May 17, 2006

Updates Coming Soon!

Category: Treatment – Melenie 10:20 am

I promise! Things are just crazy. Please know that no news is good news and we are officially in Maintenance!! It only took us a whole year to get here 🙂 Many good things to share! I hope everyone had a fabulous Mother’s Day!

Faith-Hope-Courage,
Mel

May 9, 2006

One Year…Very Long

Category: Family,General,Treatment – Melenie 6:14 am

May 9, 2006

I have thought about this day many times over the last year. There were times I thought this day would never come, or that it would come and go without my precious Kennedy. She has proved herself strong and very courageous. We have all been stretched in ways we never imagined only to discover that our lives are abundantly richer today than they were a year ago. Rich you say? Yes, beyond our wildest dreams. This has been the longest, hardest and most rewarding year of my life. I, personally, have been held to the flames until I was sure I would melt in to oblivion only to find myself strong as steel. I could not have truly lived without this last year.

What is it like finding out your priceless gift has cancer? This sweet, innocent child that you love and protect with your life is facing a fierce dragon intent on devouring her? I felt as if my life was moving at the speed of light and came to a very sudden, and painful, stop. You are literally colliding with a brick wall and you don’t see it until your entire body is consumed with fiery pain. I heard someone say one time that it is as if you are watching out the front window as your child plays joyfully in the road. A screaming car races around the corner and tears directly towards her and you are paralyzed, unable to yell to her or run to her…you are helpless to save your baby. That is exactly what it feels like. Before I share another moment with all of you, it is vital to see where things were only six months before…

As the winter season began, I was preparing for finals, writing my grant proposal and planning my next semester while anxiously anticipating my senior year of undergrad. Did you notice that entire sentence was all about me? That is where my life had been for the previous two years or so. Sure, I loved my family very much but I had become focused on what was going to fulfill me (and then surely it would be fulfilling for everyone else too, right?). I had worked hard to get to Willamette and had won awards along the way. I was career bound and would make a huge difference in the future of mankind when I graduated. Somehow, though, it wasn’t as fulfilling on the inside as it appeared on the outside. I spent too much time away from my family and my marriage had been harmed, not to mention friendships that could not be nurtured because I simply did not have the time. All my worldly knowledge (and I use the term lightly now) had only created more doubt in my faith. Sure, I knew exactly what I should say and do and I was always quick to give God praise for my many accomplishments but inside I was on very shaky ground. It came to a head one day as I was driving home that happiness and fulfillment always seemed to be just over the next hill. Like when you are chasing the end of a rainbow and can never quite get under it. It was always when the next big thing happened then I could be happy. Only when it did…the “happiness� was fleeting and the sacrifices to get there were many. As I came to this conclusion, I called out to God in a way I never had before. I mean, I had gone to him with an open heart in the past, usually in major crisis, but this was different. My faith was so weak that it was more of a mocking tone. At first, I challenged God to do something …anything so that I could see Him. You know, strike someone down or clear the cars ahead of me so I could be on my way, but then it became a true prayer. I wanted God to show himself. I mean really touch my life in such a way that I could not deny His existence. Show Him in all His glory and put His hand in every aspect of my life. Not something corny like changing the color of the sky but to do something powerful and meaningful and give me a firm foundation to stand on. Now, I know that many people will say that I was bordering on the “big� sin…you know, out right denying His existence…and I was but not with an evil heart. I felt so lost and weak that I knew the only way I could get my feet on a firm foundation again, if not the first time, was to “put out the fleece� so to speak. And boy did I!!! I had no idea then what I was asking for but after all that I have learned about God, I would do it ALL again in a heartbeat. He is an amazing God!

The days passed and it appeared that God was going to do nothing. My life continued on as it had been and as spring semester picked up, I forgot all about that afternoon; days went by fast causing weeks to fly. Little had changed and I began working on my research project and preparing my application for grad school. When I wasn’t at school, I was working at the capitol, doing homework (sometimes staying up for more than 24 hours!), running my kids all over the place between my sister’s and their activities and finding time to spend with my husband. I was so busy that I couldn’t see the signs that something was wrong until it was all in hindsight. That will forever be my burden. On Monday, May 9th, I had turned in my last final and Kennedy and I traveled to Newport, Oregon so I could gather court transcripts for my project. She slept the whole way there as the rain pounded my car. She was tired and whined until I carried her. Obviously she was well behaved as we waited since she had little energy. I had taken her temperature that morning and it was low grade so I assumed she might be getting a cold bug. She had gone to the bathroom before we left and I thought it was slightly pink but couldn’t really tell and because she was having no pain and I could not confirm it, went about my day. On our way home we stopped at the very, tiny library in Toledo to read old newspaper articles on microfiche. Again she waited patiently and read books as I poured over them looking for specific information and making copies. I took her in the restroom to go and her urine was bright, blood red. We were out of there! There was no mistake this time that something was wrong. My cell phone was out of range so I hurried along the mountain highway and headed for Philomath to get a signal. I was sure she had some raging bladder or kidney infection. The nurse at the pediatrician’s office assured me it could very well be something that could be treated with antibiotics and to just drive straight there and they would get me in.

We were unable to see our regular doctor but thankfully Dr. Stanton was there. Kennedy gave a urine sample and it was the color of cranberry juice. After a few minutes, he came in and began asking further questions. He told me that there were no bacteria in her urine but it was full of blood. He asked me about her bruises and I immediately became defensive. Sure, she had bruises, but we live in the country and she played outside a lot. I did mention though that she had some odd bruises on her fingers and pelvic area. He noticed an enlarged liver and spleen, again, this meant very little to me. The final call was the petichae on her legs. Now, petichae is when your platelets (or clotting factors) in your blood are so low that your blood literally seeps out of the veins and rises to the surface. The Saturday before, she had helped her dad mow the lawn on the riding mower and had developed hives. I assumed that it was leftover from that. Dr. Stanton pushed on them and they did not blanche. He asked questions regarding her appetite and sleep patterns that I explained away with easy and normal excuses. He left the room and I began to panic. He returned a few minutes later to inform me that Kennedy needed to be admitted for further testing and treatment. He told me that she could have a slow growing Meningiccocal. Well, that sent my heart in to a panic. I assumed that we would be admitted to Portland Adventist since his office is on the same campus. He said no, that we needed to go to Emanuel right away. I asked if I could go home and get some clothes or something. Again, the answer was a definite no and an insistence that we proceed to Emanuel. I needed to talk to my husband. So far the biggest tragedy we had was that my son had his cheek split open by a baseball only 5 days before and had needed stitches. I called Keith and told him something was terribly wrong with Kennedy and that he needed to meet me at Emanuel ASAP. I was shaking and very upset, so Sonja drove us to the ER and I left my car behind. I’m not sure if anyone has ever had the pleasure of arriving at a large, trauma hospital children’s ER waiting room but typically they are full of vomiting, coughing and sneezing children. We spent all of 2 minutes in the waiting area before we were rushed back to an examining room. We never even saw a triage nurse or anyone in admissions. I knew we were in trouble. I didn’t remember until we arrived at the ER that on our way out of the pediatrician’s office, he told me that if it was childhood leukemia, that it was very treatable and many children recovered from it. Ok. Later I found out that while he knew what her diagnosis would be, he was unable to confirm it and tell us without a blood test and because of the severity of her symptoms he knew it was in her best interest to get to a hospital immediately.

Doctors and nurses flooded our little ER examining room. Questions were flying at me and they began a series of blood tests that only seemed to cause additional pain for my baby. But soon she was feeling as if she had more energy and was actually walking all over the room and talking up a storm. My mother, Austin and Keith arrived and still we knew nothing. Grammie took Austin home and shortly after they left, the ER doctor came in with the news no parent should ever receive. She began by assuring us that Kennedy did not have Meningiccocal. Ok, that was good, right? And that it wasn’t like she had diabetes. Ok, what the hell is that supposed to mean? Then she told her us that her white count was 213,000. We were still dumbfounded. We had no idea that a normal white count is between 10-12,000 and that anything over 50,000 made her at a high risk for relapse. Finally, she told us that Kennedy had leukemia. Literally, time stood perfectly still. It was if all sound and movement came to a screeching halt right there that night. Nothing else could have been more important in that moment. Then I was shaken back to reality. What???? No frickin’ way was this happening to her. I looked right at the doctor and told her there was a mistake because we had NO health insurance. I asked if it could be anything else…anything in the world besides cancer. Right at that moment, I would have taken Meningiccocal or diabetes…just not cancer. No one could tell us what kind she had, what treatment would look like, when she would get better…nothing until morning when we could meet with a pediatric oncologist. Pediatrics and oncology should NEVER be in the same sentence, let alone be the title of one of the most important people in our daughter’s life.

Keith called his father; I called my mom and my sister. My sister came to hospital and spent the first of many nights with Kennedy and me. That was the longest night of our lives. Kennedy received red cells and platelets and all we got were many med students with questions that only made that night more painful. I just could not accept that Kennedy had cancer. I would not accept it! There just had to be something else. We could not pay for treatment, Kennedy had been relatively healthy, Keith was starting a new career, I had big plans for my senior year, Austin was playing baseball and the season had just gotten underway! This could not be happening! I had no idea what we were going to do…about anything. This just was not going to happen to my baby.

The next week is a whirlwind. In the following days we were asked to make decisions no parent should ever have to consider. Kennedy’s white count was so high that they discussed options such as pheresis, a process of draining off the white blood cells, but no hospital in Oregon or Washington would even consider doing it on a patient so young, or a possible transfusion exchange. Both were scary options. The oncology team told us that Kennedy would have to start chemo immediately and while they knew it was acute lymphoblastic leukemia, they had no idea which kind and whether or not she had favorable genetic markers. We had three options…first, we could go with what is considered standard treatment for high risk leukemia, second, we had the option to move to Memphis (and would need to leave within an hour) because Kennedy had been accepted in to a program at St. Jude’s or third, we could put Kennedy in a phase 3 clinical trial being conducted by Children’s Oncology Group. While we seriously considered going to Memphis, all of Kennedy’s treatment would have been covered 100%, the thought of leaving my husband, son and all our family and friends during the most difficult time of our lives was more than I could bear. I left all of it in Keith’s very capable hands and he decided to sign Kennedy up for the comparison trial by COG. Despite all the insurance problems, we still know it was the best decision. We believed, and still do, that no matter what the outcome was (at this time they gave Kennedy a 75-80% cure rate) by having Kennedy on a study, we could make a difference for future children with high risk ALL. Kennedy began COG AALL0232 arm DH within hours. Keith signed all the papers and we read them later just to get the ball rolling. Do we ever think we should have gone to Memphis? Sure. But we stand firm knowing that we made the best decision we could at the time with all the information we had. Chemo began right away along with a multitude of tests. During that week Kennedy had spinal taps, bone marrow aspirations, ultrasounds, an echocardiogram and x-rays. It was crazy! We met so many people from her “team� that we had no idea who was who. Everyone had an opinion, asked tons of questions and had lots of instructions. I was terrified to take her home. She was getting all kinds of medicines that I could not even pronounce let alone keep straight. I made lists of everything I needed to remember. She was terrified. She began making herself throw up every time she lost control of a situation or out of sheer terror. She was hurting, scared and felt terrible…and there was nothing I could do to help her. In fact, I was the one who had authorized all it and stood by helplessly as they poured toxic poisons in to her veins through a tube in her arm. I still could not believe this was happening to us.

One thing I did know…God was in control. When I was faced with the scariest of all demons, the possibility of losing my precious daughter, I turned first to God. And then, it all came back to me. The conversation with God in the car that afternoon. I knew right then, at that very moment, that God had a plan. I had no idea what that was but I knew without a doubt that many blessings would come as a result of Kennedy having cancer. I did not think it was fair, I did not like it, I continued to be afraid and I was mad but He was in control. I had to believe that wonderful things were going to come because of this trial. I did not know if they would be for me, Kennedy, Keith, Austin, my family, our friends or perfect strangers but I did know that He was going to use this experience to make a difference in someone’s life. He had a plan to use this hardship on our family to change the course of someone’s future. I decided right then that I could not believe in God if he made little children suffer without a greater purpose, so I would follow Him to witness at least one good and perfect thing that made every heartache worth while. I made a conscious decision to trust that even if Kennedy died because of her disease, it would be for a higher purpose or greater good for someone who would be lost otherwise. Now, understand that losing Kennedy would be one of my greatest sorrows and certainly the worst thing that would happen in my life so far, but I needed to know that if she died it would not be in vain. I made up my mind that I would follow God where ever he led me on this journey if He could promise me that astonishing things would come from all of the sadness we were about to face. And as I write this I can assure everyone that amazing blessings have occurred as a result. I have been willing to step out in ways I never could have imagined and have seen God do awesome work because of it. And you know what? I know for certain that His work is not done. I know that all of us, including Kennedy, still have work to do here. I have no idea what it is, but from what I have seen so far…it will be magnificent and it will be all for His glory.

This year has been the hardest, longest and most rewarding year of my life and I know it was because of my decision to follow God. Please do not think that I have always been happy with God or that I have always been upbeat and positive…if that is the picture I have painted I have done a poor job of expressing myself. I have spent many nights in a hospital bed watching my daughter sleep and working diligently to memorize everything about her in case she did not wake up in the morning. I have cried my eyes out to the point that no tears would come. I have begged and pleaded with God while sitting in a public bathroom to not take my daughter because I just wasn’t ready. I have watched as Kennedy has been poked, prodded, had tubes pushed down her nose, been force fed medication, laid in a drug induced sleep for days and held her when she became so terrified she lost all control of her bladder and vomited uncontrollably. I have seen fear in her eyes that I will never forget as long as I live…fear that haunts me. I have learned that cancer is one of the nastiest evils that exists but that it is not powerful. I have had the opportunity to discuss death, dying, heaven and my five-year-old’s mortality with her. I have watched families grieve as their children succumb to the cancer dragon. I have seen my strong, stoic husband melt in to tears as he holds the hand of our baby, and yet can not hold her because of the many tubes and needles needed to sustain her life. I have watched the disappointment in my son’s eyes because everyone remembers that his sister is suffering but have once again forgotten that he is hurting and missing out too. And I have watched him hold a bowl for his sister as she vomits while trying to choke down his own dinner. Every one of us, including Austin and Kennedy, can define and use appropriately words like neutropenic, TPN, nutrition supplements, intravenous, intrathecal, lumbar puncture, bone marrow aspiration, chemotherapy, liver enzymes, f & n, intramuscular injection, charcot-marie-tooth syndrome, absolute neutrophil count, hemoglobin, hematocrit, oncology, excretion, leucovorin rescue, veno-occlusive disease and CBCs. I’ve overheard Kennedy tell her 5 year old cousin, Emily, that she can’t come play this week because she’s neutropenic but that her counts are recovering and she will be better when her ANC is over 1000. We can all tell you what a normal WBC, RBC and platelet count are. We can tell you what precautions are necessary for an ANC between 200-500. Austin knows what fever and ANC will warrant a 48 hour hospital stay. He can also tell you exactly how long it takes to administer blood and platelet transfusions and at what point they become necessary. They both know the symptoms that indicate that Kennedy has low red cells or low platelets and needs to be tested. They both can rattle off what meds she is taking and the exact dosage and those she is allergic to. We have had to opportunity to stay on both sides of the pediatric unit more than 75 nights and know all the rules of the PICU. Kennedy has had over 50 red cell, platelet or plasma transfusions. She has had more than 100 pokes. We can tell you what food is good in the cafeteria and what to stay away from. We can even tell you who delivers to Emanuel at 1am! We have had all of the nurses on the oncology team many times, except the men, and know which nurse is taking care of Kennedy based on how her room is set-up when we arrive. We know which ones think the farting straw in the arm pit joke is hilarious. I have spent many nights away from my husband and son. We were in the hospital over Father’s Day and most of the summer. Kennedy was in the hospital on Austin’s first day of 3rd grade. Kennedy spent her 5th birthday in the hospital. Austin spent his 9th birthday at the hospital because his sister was inpatient. He did not get to have a party because she was neutropenic and everyone was sick. His entire Christmas break Kennedy was inpatient. Kennedy spent Christmas in the ICU totally unaware of the holiday and Austin spent Christmas morning without his mom and dad. All of these were things we never even considered possible before May 9, 2005.

But, God has done amazing work this past year. We have met the most incredible families fighting the same battle and have been fortunate to walk beside them on their journey. We have heard miraculous stories of children overcoming insurmountable odds. We have been blessed to follow the stories of children who did not survive 2005 but did more in their short lives than some people have the opportunity or desire to do in 80 years. My relationship with my children is stronger and closer than it has ever been. God has spoken to me through my children and I am a better mother because of it. My marriage has proven again that it is ordained by God and continues with His blessing. The many struggles we had in the past only set the foundation that kept us committed to seeing things through and not giving up when it would have been so easy to walk away. My relationship with my family is closer and richer. While I have had to let go of some relationships, some have been restored, others have become stronger and I have learned how to listen not only to those I love so much but to myself. I have learned what are realistic expectations and have learned to accept people where they are at. I have learned that children are resilient and if we would only listen to them they will lead us. I have learned that my husband is a provider, protector, leader and comforter. I learned that my son is not only a delight and joy, his love and compassion for others is inspirational. I have learned that my daughter is courageous, brave, optimistic and looks for something to smile about everyday regardless of the obstacles. My daughter has taught me that dying is not the worst thing…in fact, it can even be considered getting better. I know that God will provide…sometimes I can’t see it and sometimes He provides in ways I never could have imagined but He is FAITHFUL and always comes through. My faith in humanity has been restored. God has created amazing people who are so giving and not just financially but people who are willing to share their lives with us, their food (many, many thanks there!), their homes, their laughter and sometimes their shoulders and boxes of tissue. Everyone is unique and has talents that He can use in remarkable ways if given the opportunity. My faith has NEVER been so strong. I know this will not be the end of being tested but I know that I do not have to be afraid of what the future holds because He will give me everything I need. I have learned that a relationship with God is something that is continuous. We do NOT know everything or learn everything based on one crisis. Believe me, every time I thought, “ok, God, I got it now,� He would gently lead me, or sometimes take me kicking and screaming, to see that I do not have it and need more refining. My friendship with Him is in need of nurturing daily. I have learned that God’s timing is perfect. Nothing could have proven that more than the Defibritide showing up in the PICU on the evening of Christmas Eve. Now that is a story of faith and perfect timing! I have learned that I am not in control of my life and I don’t even want to be. I have learned that I can not be God to others no matter how badly I want to help them. I have learned that we all have a purpose and that if we listen, He will lead us in to that purpose. I have learned that some of the most kindred spirits live hundreds of miles away and some work at Emanuel hospital (Megan, Melissa, Lyndsee, Torey, Amanda, Tricia, Heather-both of you, Wendy, Stephanie, Darcie, Raeann, Brittian, Nellie, Libby, Louise, Sam, Suzi, Colleen, Mona and so many more). Angels are everywhere and if you look close enough you will see that they touch your lives everyday. I have learned that I can do all things with Him who strengthens me and that life is so much easier when I do not lean on my own understanding or try to light my own path. This has been an awesome year…a year of hope and disappointment, a year of sadness and great joy, a year of growth and learning, a year of balance and stumbling and my life will forever be rich because of May 9, 2005.

In Faith-Hope-Courage,
Mel