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
Sunday, December 11, 2011
Boy of steel
12 hours post op
December 11th and it is officially two weeks to Christmas day. Normally this time of year I am jumping off the walls driving people crazy with my incessant Christmas movie marathons and Christmas music. I can never seem to get enough Christian joy and spirit into this amazing holiday season. But this year Christmas means something completely different. I am writing this blog from the ICU. Last night Christian went into the operating room at 2am for an emergency laparotomy to decompress his abdomen. This evening he is resting semi-stable in the ICU as we wait for his abdomen to heal, yet again from surgery.
Uncle Peder came bearing gifts! YUM
Thursday afternoon we were transferred to the ICU because the increasing amounts of pain medications he needed required that his vitals were monitored very closely. As the day progressed he seemed to be having escalating pain that couldn’t be tamed. Sharp gut wrenching pain that makes me want to jump out a window rather than watch his eyes light up with fear as he pounds his head and the bed trying to cope. Between the wave like pains, he had a few moments of levity and release. Especially with uncle Peder coming to visit and play with his Star Wars guys. Unfortunately the intensity and frequency of his pain increased throughout the night and into the next day. A projectile vomit at 1:30am was the indication sign they were waiting for that something horrible was going on in his abdomen; they immediately mobilized the surgical team.The scary part of this whole scenario is that he was, and is currently, neutropeonic. Meaning that he has no immune system from his last round of mega chemo. But in order to prevent something catastrophic from happening they had to open him up to determine what was causing his intense pain. What a horrendous feeling to know that they are going to operate on one of the "dirtiest" parts of the body while he has no immune system. Knowing full well that a bad infection and fever could be the end for our little man. The next few days will be very tumultuous as his counts return to normal and his body begins to fight off infection and other post operative issues.
Transfered to the ICU
Thankfully when the surgeons opened him up there was no leaking bowel or damaged bowel or any bowel repair to be made. There were some adhesions that needed to be released thus decompressing his abdomen and allowing his bowels to once again move freely. When the surgeon walked into our unit room at 430 it had only been 2.5 hours since I left Christian. I knew it was either really bad or really good. So I was ecstatic when he reported that it was in fact the best case scenario and Christian was already in recovery. Before most of my family even knew something horrible was going on – it was over. I immediately felt shameful that I had not trusted my heart that Christian was going to be lead through this journey safely. I had so many doubts cast into my mind during the surgery - it was all that I could do to lay in our unit bed and wait. I couldn’t talk or move – I felt as though I couldn’t even breathe. Was I ready to let Christian go?When the good news came that Christian had done marvelous my mind played over all of the amazing victories that Christian has experienced. Circumstances that seemed insurmountable, he smashed down with a ridiculous amounts of strength. Our ICU doctor, Dr Megan Mahoney, said yesterday before it was determined that he needed surgery, "I want you to know that I am very worried for Christian, he is really sick.... he is small and skinny and only 26 lbs, but he is 26 pounds of pure steel, he is the boy of steel”.
We had so many prayers and messages of hope come through for Christian yesterday. We were lifted up by friends and family: Pastor Doug driving to the hospital at 330am to be with us during surgery, Uncle Peder and Auntry Ryan spending the day playing Star Wars, Laura G dropping off treats –exactly what my tummy would have ordered! And on and on. Random cards and messages of hope from our families and our Airdrie families (thank you Magas family) that arrive just as we needed them. God is providing for us through our community and our families. We prayed and prayed yesterday that we would be buoyed up. I was at the edge of my limits and felt very despondent. Then all of a sudden I had a peace come over me like everything was taken care of. And it is. It started over 2000 years ago with a small child born in a barn – He came to save and love us all. This year for Christmas I still want to watch my movies (in fact I am on my second one already tonight!) and make cookies and put up my tree; but I want to make sure that the gift of Jesus, the gift of grace, hope, and faithfulness are the focus of our celebrations. Because these are the gifts that are guiding us through this thorny time. These are the gifts that supply Chris and I will the ability to live each day and move forward with Christian’s treatment with peace in our hearts and hope for our families future. Merry Christmas.
Today I am thankful for:
2.Chips and Dip
3.The large stack of Christmas cards Christian got in the mail on Friday. God bless you all.