Wednesday, October 2, 2013

For we walk by faith, not by sight.

Hudson--in his deep restful sleep before the bottom fell out

My niece Casie, who's two year old son has been battling cancer for the past year and a half asked me to write my perspective on what happened yesterday....this is it. You can learn more about our little warrior at 

I have a blog I write on about spiritual lessons learned. Yet I have in the past year and a half written nothing about the struggles of Casie’s and Dave’s battle with this monster cancer in Hudson’s little body. I somehow knew I could not begin to know what I was talking about if I were to do so. 

I was right. 

Yesterday I went to Kansas City per Casie’s request to have people on site who would pray for Hudson during this 4th round of anti-body. Like number two it was a duel med round and they were anticipating problems like before; extra prayer covering made sense. 

When I arrived yesterday, my first reaction was how exhausted Casie looked. She had been up on and off all night. Lest you think of blissful days with your newborn, think again. The nurses had found Hudson in a mess of blood from his IV tube leaking all over his bed. Other things kept happening after that, and sleep was simply a luxury she never got to experience prior to the second, and first full day, of the treatments; the day that the troubles, if they were to have them, were going to start.  

Questions with Dr’s and nurses filled the first hour I was there over protocol. Why were things being done this round that hadn’t been done the round before? She wanted and needed answers, not just to question people, or cause trouble, but for Hudson’s safety and her own piece of mind. I got to see the mother bear in my niece come out, yes she is related to her aunts, but I was proud of her candor with everyone, and also her sensitivity to their position. All was explained, and yes, it was good she had asked questions, as Hudson’s Dr., like some many in the overworked medical community, was unaware of some things. As I sat and listened and watched I was praying silently for Casie and the Dr’s and nurses. After all wasn’t that what I was there for? 

As issues got explained and the morning rolled on, Hudson slept, a peaceful deep sleep that Casie assured me was just what we wanted. His fever had been up and his heart rate elevated, but the Tylenol seemed to bring it down, and all was better. Prayer was being answered. 

Around 3:30 we noticed Hudson scratching his neck. Earlier in the day he has pulled off a “lead”, one of those little sticky patches they use to hook monitors up to, so we were watching him to make sure he didn’t do it again.  Bright red patches began to form. I’ve seen hives several times in my life, and Casie saw them too, so she called the nurse. Another of the myriad of medications that he is entitled to during this time was given, with a word to watch him for any issues that would signal an allergic reaction, even though he had been given it many times before. 

We continued to pray and chat. But I must interject something here. On my drive to Kansas City, earlier in the day I felt the leading of the Holy Spirit to rub Hudson’s feet. As it turned out, through the course of the day, it was about the only part of his little body he would allow anyone to touch without crying out “No! No! No!”.  

After the administration of the meds, I again lifted the blanket to rub those little feet, and noticed that his toenails were purple. I mentioned this to Casie, who immediately started watching him even more closely, if that is possible. She is so in tune to him, and what he is experiencing, and looking for those subtle changes, that nothing escapes her; the result of a year and a half of fighting for your child’s life. As I continued to rub and massage those feet, he grew paler and paler, and his lips began to turn blue, we noticed a change in his breathing.

She called the nurse, his temp had spiked, and his heart rate was up; way up and rising. The nurse called the PA, who called the Dr., who ran up four flights of stairs, and within minutes they were struggling to get a good blood pressure reading, and the room began filling up with people. They unhooked him from everything, the morphine, the antibodies, the other drips, all unhooked. Cold packs were applied to his head—after all it had worked before—it didn’t work this time. Finally I saw the Dr. pick him up and move him to the crib. The crying began in earnest as Hudson kept reminding them in his furtive pleading, “DONE! DONE! DONE!” and “NO! NO! NO!” Casie was in the midst of all of this while Dave was skirting the Dr’s backs, pacing and watching.  More people came, the crash cart was called, oxygen was hooked up, and there simply didn’t seem to be enough room at the side of that crib for all the people. The room kept filling up; a security guard walked down the hall and stood on the other side of the hall from me, watching. I felt the presence of someone and turned to find a kind smiling lady, who introduced herself as the Chaplin. 

I knew we were in trouble by all the people running, yes they were running, to the room, but a Chaplin?!! 

His heart rate was dangerously high, 224 at my last good look at the monitor and rising. The looks of concern of the two Dr’s in the room, and the other people as well assured me that something was going horribly wrong. There were nurses and aids, who have worked with Casie and Dave throughout this whole ordeal, standing in the hall, watching and waiting. I began to feel my knees shake, and I couldn’t really think too clear. But I was pleading with God, begging, and crying out that He stop whatever it was that was going on and help that baby, and his parents.  I realized at that moment, that many words aren’t prayer. Prayer is an attitude, how-be-it one of desperation.  

He was going to be taken down to the PICU where they could administer another drug to bring the heart rate down. It was now high enough that had it been you or I we would have passed out. The drug they needed to give him since the first three syringes hadn’t done the trick, could only be administerd in the PICU. 

I stood in the hall and waited, straining to hear, watching every face that came and went from that room, searching for a sign of hope. 

I don’t know for sure just when things began to improve, but people began to leave. Eventually, the oxygen and the crash cart were pushed out with the EKG machine and the defibrillator among other things. The looks of concern turned to a sort of half smile as everyone began to speak in normal tones. I caught a glimpse of the heart monitor and the rate was dropping.  I still could not see Casie among those by the bed. Someone told me it was O.K. to go back into the room. I did. 

Casie was pale, her eyes wide, Dave was pale, the Dr’s were both more serious than I’d seen them all day, and as they spoke with the kids, it was almost a whisper. He would not be moved to the PICU, throughout the entire ordeal his BP was normal, his oxygen was normal, only the heart rate was elevated. Something they had never encountered before (remember this IS Hudson). He would have more tests, and be re-attached to the morphine drip, and antibodies, in a few hours after test results came back. 

As the adrenalin rush began to subside I finally made eye to eye contact with Casie. We hugged and we cried, and we hugged some more.  

To say I have a new perspective on what Casie and David are living with would still be a huge understatement; I don’t, but I do, to a degree. I was humbled to my core at the realization that until you have lived the nightmares of watching your baby endure cancer treatments you cannot possibly relate to anything they describe or tell you. Really, don’t think you can, nothing in this world can be like standing there helplessly waiting for them to “fix” it, when deep down you know “they” can’t; only God can. 

To live a day in this world is exhausting, let alone a year and a half. The adrenal rush of moments like this cannot be good for the body, and I ask myself on the way home, how many of those experiences since this all started have they gone through? 

Listening to Hudson plead to be left alone when he feels so horribly bad would break the heart of any one, let alone his parents…..I will never forget the sounds of  those cries. And I hope I don’t.  I hope that this day has taught me a lesson in empathy that will deepen my resolve to pray. 

Pray……yes that is what I did all day. Some might say it made things worse, others would testify to the evidence of a spiritual battle that is going on over the life of a tiny little boy who, in the huge scheme of things, for some, might not understand the significance. But there are forces at work in this world, and if you say you believe in God and are a follower of Jesus Christ, you cannot deny the Word of truth when it says,  

 For we do not wrestle against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this age, against spiritual hosts of wickedness in the heavenly places. --
Eph 6:12

I interject this because prior to my going to KC, my sisters and I had agreed to pray in a concerted effort at 4 p.m., and others who knew of it agreed to pray with us at that time as well.  Hudson began to itch at 3:30, just prior to prayer time. By the time 4 o’clock rolled around, the battle was raging. God won---again. He will continue to win. But without those prayers? We may never know but I’m still willing to go on faith. Faith in God, because when it comes right down to it, after what I saw today, it is all we have. 

May His name be Praised!