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
Wednesday, April 20, 2011
Walk the talk
Only 16 short weeks ago
It has been a difficult week for me. I feel weird saying that it has been difficult for me being that my son is the one who is battling cancer – but it has. The flu has snaked itself into our home and despite our best efforts to keep him ‘clean’ Christian has now come down with a full fledge cold. Chris and I jump at every cough and cringe at every sneeze. Each hug is an opportunity to check his temperature as we wait for the inevitable midnight run to the hospital. The very first thing we learned when Christian began his chemotherapy treatment was how important it was that he doesn’t get a fever. A fever is an indication that your body is attempting to fight some kind of an infection. The scary part is that some days he doesn’t have an immune system to fight with. So if he were to get sick his only line of defense is the hospital and the drugs (antibiotics) they give him. So at the first sign of a fever we pack our bags and head straight back to unit 1. Early on in our treatment when Christian was really sick we made two or three late night runs to the hospital with fevers. It is a scary and helpless position to be in when your child is sick and there is not a single thing you can do about it – but pray.
So back to the original statement about the difficult week – as we wait for the results of his CT scan I find myself playing the ‘what if’ game. I feel ashamed that I can talk the talk but when it comes time to walk, I lack the strength and trust to do so.As I sit here and contemplate his future I am trying to remember that he is in God’s hands and will be taken care of. But it is so difficult to let go. So difficult.I keep thinking back to our first few weeks on the unit and how sick Christian was and how far we have come since then. As I am typing these words Christian leans over to me and says, “I love you mama” and throws two skinny little arms around my neck and gives me a squeeze and a peck on the check, as if to reassure me that he is ok and I should be too.So many things have happened, so many stories of people helping us, so many trips to the hospital, so much information. Bringing us to this point here –waiting to see how this episode will end.
Christian's self portrait
There are some things that I don’t want to forget about these first few months of our voyage.
-Eating all the homemade meals in the cafeteria at ACH hot or cold brought by so many different families
-Praying in our room with friends
-Spending time getting to know each of our nurses
-How many star wars action figures he was able to accumulate in the first few weeks (he had a bag thatwas full of present and we let him open one each time he had to have a poke or a test – but the bag was gone in the first few days) now we have every star wars guy imaginable and more pokes to come
-The comforting feeling of returning to room #16 when Christian was sick with fevers – we knew when we were there that he would be taken care of
-Standing in the hallway just before lunch with the medical team listening to ‘rounds’ as they discussed Christian and his plan for the day
-Calling Marilyn on the phone when we discovered his bone marrow was clear and not been able to keep the tears of out my eyes
-How much Christian has learned and developed over these past few weeks. His understanding blows me away and I have no words to describe the love in my heart for my son.
Weird blog today that I think is an excellent representation of my state of mind due to lack of sleep and inability to shut down my brain – all over the place. Thanks for reading and praying for us and for Christian's healing.
Evan and Nanny
Today I am thankful for:
Safeway rotisserie chicken and instant mash potatoes
Movies you can watch over and over again (When harry met sally #233 tonight)