Yesterday was Clinic and a no good, horrible, very, very bad day, to use my son's words. Evan was scheduled for an LP and spinal and IV chemo. He was invited to do the LP or spinal tap, without sedation, without the OR, without "loopy" medicine. Tough it out...true grit style.
Evan accepted the challenge and aside from the seven and a half minutes of the actual procedure feeling to him like a lifetime, not to mention the complete depletion of his emotional stress reserves, and the additional ten hours in an Urgent Care hospital bed, he did fine.
His spinal fluids were reported as clear some hours later...no relapse. Praise! What a strong, brave boy! I was so proud of him, albiet, exhausted myself.
The procedure took absolutely everything he had inside his brave soul and it tore at my own heart as well. No one should...well, you know where I am going.
Unfortunately, while held captive, the doctor decided that perhaps Evan had the wherewithal, physical stamina and emotional fortitude to remove his PICC/IV line, again without anesthesia, on the same day! OK, that's alot to swallow in one day, for even the strongest of us. Evan accepted the challenge. You see, after a time, the huge and significant risks of keeping the same IV line and the possible complications outweigh the benefits of no pokes and you come to a juncture in treatment where it is safer to be poked and have IVs for all necessary treatment.
There was alot to the decision, but it was finally agreed his line would be removed, again, with no anesthesia! It all proved to be just about too much for our little warrior man. I had him primed and focused and enthusiastic, but, there were complications. Statistically speaking, 399 of 400 children have a line removed with no problems. Guess what number Evan got? Yep... 400. Ten hours and buckets of blood, sweat and tears later, we came home to await the scheduling of surgery this week to remove the remaining 15 centimeters of line that remains. I won't go into the details...most people I know have turned "green" just thinking about what is involved.
The surgery will be vascular in nature and involve flouroscopes, radiation, a surgeon and a radiologist and yes, anesthesia, and hopefully, no more pain. Yesterday was alot of pain. Children and off the charts pain...the combination brings me such sadness.
I also haven't figured out how I am going to work with a child on steroids, "roid" rage and hunger nothwithstanding and the 12 hours, plus procedure with no food or drink, once surgery is scheduled this week.
The only way out is through, so we march on. This too shall pass, but until it does, please keep Evan and all the other children who struggle with this beast in your thoughts. It's quite the bump in the road for Evan and so brutally unfair for all who are diagnosed. These children truly suffer. Thanks for checking in on Evan. For those of us flabergasted at the recent Carepage changes, I will double my posts here and there for a time.
From my vantage point, if the frustration at the new Carepage site confounds you, like it does me, or if our car breaks down, or our heads hurt today, we might give a thousand thoughts and prayers up for these precious children and consider a posture of gratitude, for, in the scheme of things, with all things considered, we probably are having a very good day, indeed.
More, when I know more. Surgery will probably be on Wednesday.
xoxo mom
