It’s amazing how quickly things can go from critical to almost normal. A month ago, Kennedy was still in the PICU fighting and now she is antagonizing her brother.
Friday, Kennedy had a counts check and I thought we would be getting chemo. This Interim Maintenance 2 phase is really confusing. Apparently because her numbers weren’t good on the 20th (scheduled chemo day) they needed to take them again in 4 days (the 23rd) and while they weren’t high enough to get IV Methotrexate, it was absolutely necessary to give the Vincristine at full dose. So, then we went in on Friday (the 27th) and she is not due for chemo until tomorrow (the 31st). It looks like her platelets will be high enough tomorrow so she will get more Vincristine and IV Methotrexate. Because she had a hard time metabolizing it (due to her liver) and it took too long for her blood counts to recover, she will only be getting 80% of what she got last time as opposed to the 120% increasing dose. If she handles this well then in 10 days she will get 100% again. Her liver is still not processing enzymes or ammonia well, so it was necessary to increase the Lactulose again to 20mg/2x per day. We were all so happy. NOT! It causes almost continuous diarrhea. Thank heaven for Butt Paste-yes, that’s really what it is called and she would be in a world of hurt without it. She also pulled her NG tube out on Thursday, purely by accident. She was behind the front door getting something out of her DVD bag and it got caught on the zipper but then I opened the front door from outside causing her to sit and out it came. I was shocked that it was just lying and the floor and Kennedy was totally oblivious to it. She has been eating a lot so after talking to Tricia, we decided not to put it in at that time. We still however, have 5 ½ cases of Peptamine Jr. worth over $1000 that we will have to pay for because the insurance company decided not to pay it after pre-authorizing it. We are going to keep it rather than donate it until Kennedy goes in to maintenance so we don’t have to buy it again if she needs another NG. We will be fighting them and hopefully getting reimbursed for all of these expenses. I guess either way it will be fine as we can use it as a tax right off! Always trying to see the glass half full!!!
Saturday I met my sister for breakfast and then we headed to a day of Scrapbooking with her friends. It was so much fun and I was able to get Austin’s 2nd book finished and get started on Kennedy’s 2nd book. It was nice to have girl time and laugh and talk about kiddos and husbands and such. I will just leave it at such but they all know what I’m talking about! Tammy generously opened her house and everyone made me feel so welcome. She even sent me home with what was left of dinner-yummy enchiladas! They were fabulous! I was totally crashing around 6 pm despite their enthusiasm to scrap all night and went home early to hit the hay. After having the kids all day, Keith went to get some quiet time by heading out to a late showing of Underworld. Not my idea of a good time so I just went to bed. Sunday we had a date afternoon and ate at our favorite place: Chang’s Mongolian Grill.
I do have this nasty chest cough thing that is hanging on and I even pulled a muscle in my side last night so please pray for healing and that it doesn’t become pneumonia. It’s hard to justify going to the Dr. when my only symptom is a cough-no fever, stuffiness, ear ache, etc.
I was thinking the other day…God does not promise that our life will be free from adversity or troubles when we choose to follow Him, only that He will walk beside us and carry the burden. This life has been full of struggle and at time overwhelming but boy, has it been rich. I am having a fabulous time and I am learning something new and wonderful about Him every single day. He is showing me things I have never dreamed of and allowing me to share those experiences with others in ways I never could have before. Is this journey hard? Does it hurt? Sure, but oh the blessings that He has given me and the insight has been worth every tear and every stumble. It is true that we do not learn from our successes in the way that we learn from our failures and we can not possibly comfort others in a genuine way when we do not understand the darkness they are walking in. Despite all that I have walked through (and that is for another day), I can look at my life and see tremendous blessing and richness far beyond what is in my purse. Had I not walked through so much before, I could NEVER have walked through this journey with Kennedy. I would have been swallowed up in darkness if I had never seen the triumph that comes after the journey-the pure and illuminating light that comes when His path is followed and healing has taken place. I know that I know that regardless of how this journey ends, He has a plan and his purpose is for a greater good. We do not have a heavenly Father that would allow suffering without having an incredible reward. I know that we may never see how He uses this but I know without a doubt that something miraculous will come of it. After we almost lost Kennedy over Christmas, I began really thinking about and praying about what my part is in this journey. I can NOT be God to Kennedy or anyone else (nor do I want to be) but I do have a part to play. Whether we have Kennedy for a year or 80 years is not up to us but what kind of quality of life am I offering to her, Keith, Austin, my parents, grandparents, sister and family, extended family, friends, those I come in contact with everyday and most importantly myself. What is the quality of my life here? It is not about possessions or money. It is not about vacations or success. It is about living the life that He would have me to live. It is about having Jesus shine through me everyday in such a way that there is no question as to who I follow. It is about sharing my life with those I love and care about the most and making them a top priority in my life. It is about showing kindness to everyone-even the creep on my tail that I just have to let pass. 😉 It’s about fulfilling His purpose for my life and laying mine aside. What I have found in reading about others journeys is that when we truly listen to Him, His desires for us become our desires and we truly are fulfilled in all we do. Here’s to following His purpose for your life-May you always see the right path for you.
Many heartfelt sympathies and love to Nikolette’s family. She ended her battle with ALL on Friday, January 27th after fighting for over 10 years. God and heaven are rejoicing at the sight of their new butterfly.
A little faith will bring your soul to heaven, but a lot of faith will bring heaven to your soul. ~Author Unknown
Love-Hope-Faith,
Mel
