When Kennedy was first diagnosed, we heard the doctors, nurses and other families describe the journey as a rollercoaster. While the first two weeks of induction were crazy, things slowed down and returned to “normal” for the last two weeks. We assumed that when induction was over things would begin to stabilize but it just continues to be crazy with corkscrew turns, steep hills, sheer drops and upside down loops. What a wild ride! Kennedy has been handling the side effects of Vincristine much better this time. Her WBC has risen and dipped and risen again. Her platelets however, have suffered terribly this round. As I mentioned on Saturday, her platelets were low (76), remember normal is 140, but we were sure she could make it until Tuesday when she was scheduled for her next round of chemo in Day Treatment. When she woke up Sunday morning she had about 5 noticable bruises and when I brushed her teeth, she had 4 spots that bled a significant amount. I continued to watch her and by the evening she had close to 30 bruises and had not been playing rough or fallen. I called Dr. Norwood who told us to watch her and call him in the morning (July 4). She woke up about 11 pm with more bruises, that were red, and petechiae on her legs, arms and torso. I called him back and he told us to go to Emanuel’s ER for platelets. Kennedy has experienced internal bleeding in her kidneys and stomach with low platelets before and he felt it could not wait until morning. He called me back to remind me to pack a bag because if Kennedy was running a fever we would not be going home. Keith and I drove to Emanuel despite being exhausted. After finally becoming comfortable with the staff at the Onc/Hemat clinic, Day Treatment and peds floor she encountered strangers who wore gowns, masks and gloves and wanted to access her port. She was horrified and began screaming and crying. We had to hold her down while they accessed and taped her port. It was terrible. I do realize they were doing their best, helping us and doing their job but I HATE going through this crap! We no more get her comfortable and used to things when something else happens that blows it! The good news of the night was her favorite nurses (Megan) popped in to see her. We were relieved. It always feels better to see a familiar face. Kennedy’s favorite singer is Gretchen Wilson (Red Neck Woman) and Megan had been to the concert last weekend. While she was there she bought Kennedy a poster. Kennedy was excited about it today but was just too upset last night. After receiving platelets, and because she did not have a fever, we were free to go and crashed in our beds around 5 am. I do love a good sunrise but I was not happy to see the one this morning 🙂 The ER staff was wonderful and got us through as quickly as possible, it was just that the whole ordeal was traumatic.
Last night at the ER as we walked by the room where Kennedy was diagnosed, I realized today (Monday) was 8 weeks for us since we heard the words “leukemia” and “your daughter” in the same sentence. Wow. A lot has changed in just 8 weeks. I still long to run back in time to before she was sick. The feeling is worse when I see pictures of her or watch a home video. This horrible sinking pit in my stomach returns. I still feel like I have jumped out of an airplane with no parachute. I struggle to grasp something to keep from falling. I now cling tightly to my faith. It’s amazing. The last couple of years I have really struggled with my beliefs and my faith. Going to school has made me question so much of what I thought I knew. From the moment of Kennedy’s diagnosis, the moment we heard those words, I knew without a doubt that God had a purpose and plan for Kennedy and our family. It was faith in its purest form. A trusting and believing I have never felt through all of my trials. I know that no matter the outcome, that God will use our experience to bless others beyond anything we can imagine. It is this faith and undying hope that allows me to have strength for my trials and strength for my family. I am extremely grateful that so many people have prayed for Kennedy and shared with others her story. God continues to provide exactly what we need for each and every moment.
On the note of God providing…after having a crazy night, and early morning, my Auntie Sue and cousins Holly and Sammi came over. We always laugh like crazy together and I needed that to uplift my spirits. Holly shared something wonderful, 50 minutes of laughter is equivalant to 30 minutes on a treadmill. I certainly did well today. In addition to bringing Kennedy a wonderful horse that she loves to sit on, a new Barbie plate, a beautiful bandana for her hair, a soft knitted chemo cap and “fancy” (in her words!) zipper pull, they brought laughter and funny stories to our house. Holly shared her stories from Mexico (including a touching story about the family they built a house for), Sammi shared her gorgeous new smile (no braces) and Auntie Sue shared her magical laughter and warming hugs. It was exactly what we needed. God knows precisily what will help us and we don’t always have to tell Him. Terry, our neighbor, also brought the most beautiful blue Hydrangeas over this evening to share with Kennedy. My mom normally can not have flowers in the house, but these were fine and look wonderful on our table.
Austin and Keith went to the Buckeroo. They had a wonderful time and Austin won a big Tigger for him and a husky dog for Kennedy. They enjoyed the clowns, horses, bull riders and sunshine. They needed the “guy time” and Kennedy and I needed a nap! We slept the afternoon away and Kennedy still wants to go to sleep tonight. That is a blessing.
Well, tomorrow it’s off to Day Treatment for an LP with MTX and more Mean Christine (or Mr. Grinch!) the lovely-Vincristine**** 🙁
We’ll check in soon. Lots of love and Happy 4th of July!!
Keith, Mel, Austin and Kennedy
