Posted on September 23, 2017
Thank you all so very much for your love and support so far! We have been truly so touched and humbled by everyone's generosity. Today Leo finished his 4th radiation treatment and his 2nd dose of chemo. Only two more radiation treatments and 23 weeks of chemo to go! We will be really happy to be done with radiation on Tuesday. Because he's so young, the treatments require him to be sedated each time so that he doesn't move at all. The sedation requires fasting for several hours beforehand, and though we've been lucky to have early morning appointments, he has been less than thrilled about giving up his early morning nursing marathons! Once we've finished radiation, it'll just be a matter of going into the clinic once a week on Fridays for his regular labs and chemo.
We feel very grateful to have an excellent team of doctors supporting us on this journey. We have two pediatric oncologists at Children's who have both been excellent so far. We've been working with a naturopath who is also a medical acupuncturist. We are consulting a research doctor who is researching Wilms and analyzing Leo's genetics, lab results and pathology reports to determine if there's anything else we can do to increase the effectiveness of his treatments while minimizing the harmful effects of chemo and radiation. The nurses we've worked with have been nothing short of incredible--I will never forget how well they've cared for us, their medical expertise, level of experience and their compassion. The nurses are truly the heart and soul of CHW and I am forever grateful for them.
Leo's biggest hurdle at the moment is weight gain. Since we were first admitted to the hospital on September 2, he has stopped eating and has dropped from the 30th to the 3rd percentile for weight. On Wednesday, he willingly ate a small plate of food for the first time in 18 days. His appetite has slowly increased since then; I think we've been able to stimulate his appetite with tube feedings and he's starting to remember how delicious food is! I also think his refusal to eat is stress related. He is a sensitive little guy and he has been through so much in the last few weeks. He is starting to relax around his regular nurses and doctors and spending more time at home and less time at the hospital has helped a lot too. We are hoping that this week he'll gain some of the weight back as we start to settle into a more regular routine.
These last three weeks have been nothing short of an emotional roller coaster. I have felt things I didn't know I could feel. The initial shock turned into sadness, crippling fear, confusion, guilt, anger at God, anger at myself and anger at the world. There has also been abundant grace, relief, joy, strength, courage, gratitude, hope, surrender and peace the surpasses all understanding. I know that God is with us in this and that He doesn't want this for Leo or for us, but that He has allowed it by His permissive will for a greater purpose. Suffering becomes sweet when we are able to unite it with His cross.
One of my biggest struggles has been reconciling between the will of God and our will to fight this battle. I can't pretend that I'm in control of my son's life. Nothing has forced me to face that reality more than this diagnosis. I am praying constantly for God to heal my baby, but despite the favorable prognosis I do not know what God wills for Leo and I have struggled to rally facing that realization. What I do know for certain is that whatever the future holds, God will give us the grace we need to endure it. No matter what the outcome is, we will beat this cancer because we will never let it steal our faith or destroy our devotion to Him.
Many of you have asked how you can help. Aside from financial contributions and prayer, the biggest thing we need is positivity! This is a tumultuous time for us, but we are actively choosing to take on each day with an upbeat, positive attitude and to live a life of joy. I am completely amazed by how resilient little children are in the face of such trauma. If Leo can wake up with a smile each day, then so can we! The uplifting and encouraging messages we've received have helped us more than you know! It really ignites a fire in us and gives us the grit we need to take this thing on. We are so grateful to have so many great cheerleaders on our team!
Thank you all again from the bottom of our hearts. I wish I could thank each and every one of you in person to tell you how much your support means to us. Perhaps the most beautiful good that God has brought out of this suffering has been the outpouring of love from all of you. Thank you all for being such beautiful instruments of God's love. May He bless you all and shower his blessings upon you!
Meghan and Chris