This is the ongoing story of our five year old son's battle with stage 3 Rhabdomyosarcoma in his abdomen. He recently earned his wings and entered the kingdom of heaven. He is full and surruonded by God's glory. He is our little hero and an amazing example of the adversity that children can overcome. God is our Healer, now that medicine is done, GOD will begin. All the glory belongs to HIM
Tuesday, February 28, 2012
It’s just one of those days. Woke up tired, spent the day tired, bit my tongue eating breakfast, Christian threw up his breakfast, can’t seem to shake this headache, kind of a sad feeling vibe in the room. I have a tendency to want to leave our hospital room door open; I even put a chair outside in the hallway so I could sit outside the room. I think perhaps I have been here in this hospital room for too long. So long that I am scared to leave. Chris is starting to feel better and we even discussed him staying tonight, as I fear a sore throat is creeping into my world. The thought of not being here causes me some serious anxiety. I have been sucked into the oncology world and now I am afraid to leave. I have spent the better part of these past two weeks trying to nurture Christian back to health, trying to put smiles and his face, trying to wipe the tears away, trying to distract his pain.I have invested many hours with the different medical teams keeping track of Christian’s health, oncologists, hematology, pain services, dietician, physiotherapy and transplant. In our world that right now seems so out of my control it feels good to be able to control something. If I leave I am afraid I will lose it. I know I will constantly wonder how Christian is doing? Is he crying for me? Does he need a hug? A warm blanket? A sip of ice water? Chris is absolutely capable of doing all of these things – in fact it’s not really about Christian at all. It’s about me releasing control. Sigh.
This is a preamble into preparing myself to leave the hospital. As weird as it may sound this oncology unit brings a lot of peace and comfort into our day. There is always a friendly face when you are sad, worried, scared, and unsure. Somebody who knows exactly what you are going through. Somebody else who is staring death in the face. Another mom or dad who is fighting for their everything. Somebody who has it a little better and somebody who has it a little worse. Even at one in the morning when you can’t sleep you can always wonder out to the nurses station to say hi and join in the conversation. There is always a nurse or doctor outside the door to ask your medical questions and dispel your worries.I wonder when we finally lay down in our own bed together, will it feel a little lonely to not hear the noises of the machines, the hum of the oxygen running and the giggling of the nurses at the unit desk. I cry some tears and my heart feels heavy at the thought of losing these people from our lives who have given us so much. Who have given us validation for our feelings and hope for Christian’s future. I have never truly respected how amazing these people are who not only care about Christian’s body but about his heart, and about our hearts. Their smiles at Evelyn and Ryan when they come into the unit for a visit. Laughing at Ryan running to the unit fridge saying, “cheese, cheese” and slapping the door till we open it and get him some. We have become a family here in the oncology ward and when we leave it will be like leaving a home that we have become so comfortable in. We will have to say goodbye to people that have touched our lives forever and nurses whose faces and names I will never forget. I am sure it all sounds very weird but my heart aches none the less. I wish their was someway I could honor them and how they fought along side us for Christian. The only thing I can think of is to ensure that we take what they have given back to us and run with it. Run to the park, the beach, the pool, to the couch on Saturday mornings in our pj’s. This blog is dedicated to the nurses of Unit one. Each and everyone of you will live in our hearts for a very long time.
Hospital visit with Nanny Lou who
As I look out our window, once again at the lights of COP, I exist in a life saving bubble. Christian has been kept alive in this bubble and I wonder what will happen when the bubble is no longer needed. Will I remember to be thankful? Will I remember all the lessons we have learned over this past year? I hope I can read back over my words and remember the feelings and emotions we experienced. I pray I can remember our feelings of despair and desperation. Will I remember how it felt the nights I prayed to God that we would keep our son?Will we be able to continue to honor Christian’s valiant battle with a life of service and gratitude? Wow well that is a lot to digest. Maybe this is why I have a headache.
Ok random ramblings aside Christian is doing great today on day plus 13. His counts have continued to improve and in some cases they are the best they have been since he was diagnosed. He is spitting less and swallowing more. He drank half a glass of juice today and used a lot less pain medicine. The sedatives, antibiotics and narcotics are slowing coming down and his energy is slowly rising. I can see glimpses’ of his old personality returning and his desire to play slowly build. He is, for the first time in almost three weeks, interested in his star wars guys again. I feel discharge day is coming soon. We will have a tearful goodbye and take the familiar drive home. Soon we will have a much deserved celebration with pizza, dancing, balloons, music and fun…anybody in?
Thankful for the ladies who took such good care of Evan over these past three weeks
Thanks for reading and for your continued prayers.