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, December 21, 2011
Loving my new Christmas PJ's
It has been a long two weeks. The Wednesday before Christmas and we are still living in the unit while Christian recovers from him emergency laparotomy. There are some families here on the unit - that due to the type of cancer their child has – who rarely get to go home. And I wonder how on earth they survive. Two weeks here and I am ready to pull out all my hair. I am amazed and how much I long to be at home with my whole family together. I pray for the day when Christian, Evelyn, Ryan, Chris and I can spend the morning together eating breakfast and watching morning cartoons. I want to sit on the couch in my PJ’s and with my Tim Horton’s coffee and not move for a week. I want to watch the kids play together and enjoy each other’s company. They are only little but I know they miss one another. Yesterday Ryan came to the hospital to visit Christian. He crawled up on Christian’s bed and started to rub his head then he put his head down on Christian’s chest. I thought I would cry a million tears right then and there. Not in sadness but overjoyed that Ryan obviously misses his brother and is able to show affection and love even though he is so little.
That being said that are a lot of blessings and things I am so thankful for, even though we have become semi-permanent residents of the hospital. We are in, by far, one of the best children’s hospitals in the world and the entire staff make a tremendous effort to make sure the season is special. Santa has come to visit and bring presents twice (once with his reindeer)! There are holiday decorations everywhere and lots of Christmas activities for the kids to do on the unit. At home we have had many visitors who have dropped off treats for our family, meals to the hospital, gifts on our doorstep, offers of babysitting and dozens of Christmas cards in the mail. We feel overjoyed with the support we have received this Christmas and it truly has made a difference in our day to day lives. There are a number of things that Christian does to pass the time in the hospital, some of his favorites are buying Clone Wars episodes from ITunes, playing with his star wars guys, watching Christmas movies (happy to say that Home Alone is back in the top 2!) and lately we have been able to cruise on down to the sunshine room to partake in whatever fun stuff they have going on in there (video games, bingo, making fudge).
Is there anything better than a toy box?
We were also blessed this week with the arrival of Aunty Sarah (Chris’ sister) who came to spend the holiday season with us. One of the most difficult parts of this whole process is how disjointed our families can get, it is so nice to have somebody in the house who can keep schedules for the kids and keep them from feeling left behind (which they all to often are). My mom has finally got her suite finished, which is a wonderful blessing to for her since she has spent countless hours with Evelyn and Ryan while we are at the hospital. The amount of time that people have spent helping us with the kids is remarkable we will never be able to repay. My mom, Papa Norm, Nanny, Kelly and Heath, the Metcalfs, Aunty Sarah, Louise and Tracey, Aunty Dianne, and Bethany are just a few of the angels God sent for Evelyn and Ryan during this past year.
Our most cherished blessing this year is the gift of health and hope. Even though Christian doesn’t have full body health we feel that God is guiding his journey to wellbeing. There are so many things that could have gone wrong for Christian over this past 6 months during his surgeries and recovery. Yet every stumbling block put in his path has been cleared with God’s gentle hand. I feel a tremendous amount of peace and hope when it comes to Christians healing. I believe that God will continue to guide Christian to full health despite the circumstances we find ourselves in. His healing from this past surgery is nothing short of a miracle. When the ICU doctor told me in the middle of the night that Christian needed an emergency surgery there was fear and doubt in her eyes. Yet the surgery was an absolute victory. In his room that next morning the Surgeons are telling us that things are very dicey, dangerous and things are going to get a lot worse before they get better. I believe deep in the woods was a phrase I heard once. Yet again nothing transpired and Christian responded perfectly to the efforts of the ICU staff. No major fevers, no infections, no fluid imbalance problems. Just peace under his eyes as he sleeps and dreams of pizza. His first words after he was extubated were “hungry”. This is how I knew that everything was going to be ok.
Today is the first day that Christian has been completely off his narcotics and he is looking great. We are on a course to be home by Friday – just in time to decorate a tree, make some cookies and watch some Christmas movies by the fire. His bowels are working well, he has very limited pain and his weight is increasing. Our little minor stumbling block for this week was a small bed sore that we caught just in time and is healing nicely. This morning we are having a new NG tube put in that we can hopefully keep for the next while. Thankfully the staff at the hospital has agreed to do the procedure under sedation so Christian won’t have any stress about it. We are praying the tube will allow us to feed him at night and help him to gain the weight he so desperately needs. Chris and I desperately need some sleep and family time together. Our communication skills are getting really good as we shout out words to each other as we tag hands in the hallway when we switch shifts at the hospital. Yesterday I forgot Evelyn in the car (yes I have become ‘one of those parents’) and it was a real wake up call for me that even though I may not agree, my brain wants some sleep!
Christian and Aunty Dianne
Right now I look over to his bed and his eyes are alive with excitement as he watches his newest episode of the Clone Wars. He smiles and laughs at the funny parts and calls me over to watch the battle droids get blasted. He loves it! And my heart is so full of joy that he can have some peace and happiness in his day. There are many more blessed days to come and I look forward to them but I am also learning to take these small moments of joy and soak in them until another one comes along.
Today I am thankful for:
1.ITunes staff who quickly fixed my ‘broken’ ITunes card