Steroids

The lumbar puncture was the first part of treatment.  Later that day he received all of his chemotherapy.  Two doses of something that took 15 minutes each to deliver (really anticlimactic if you ask me).  The remainder of the week was steroids in the form of prednisone.  Here is a list of prednisone's side effects (conveniently available on the internet):

• Aggression
• agitation
• anxiety
• blurred vision
• decrease in the amount of urine
• dizziness
• fast, slow, pounding, or irregular heartbeat or pulse
• headache
• irritability
• mental depression
• mood changes
• nervousness
• noisy, rattling breathing
• numbness or tingling in the arms or legs
• pounding in the ears
• shortness of breath
• swelling of the fingers, hands, feet, or lower legs
• trouble thinking, speaking, or walking
• troubled breathing at rest
• weight gain

All of those items that affect mood or behavior came out in our poor child.  I am convinced that the side effects of steroids was the hardest thing to deal with over the first week of treatment.  He can go from excitedly beating Mom at Phase 10 to weeping over the thought of the nurse taking vital signs.  Sometimes he would hop out of bed to go to the bathroom, other times he would cry for 10 minutes because of pain and finally admit to needing to go to the bathroom.  He would weep over being told to eat.  And who does he want to be with him?  Mom or Dad.  Nobody else.  Glad he loves us:)

He hates taking pills.  This is true when he is in his best conditions, but with prednisone, much worse.  I don't even bother having the nurses try to get him to take it, I just settle in and do it myself (get him to take it, not take the pills myself).  One day I spent about 1 hour and 40 minutes convincing him to take 8 pills at two different times of the day.  It becomes a challenge as a parent to be patient and loving at moments like this.  This is the time to step back, take a deep breath, and realize all that is happening.  The reality is we have taken a little boy who should be able attend school, play outside, build legos at home, and  told him he has cancer, put him in the hospital where he gets poked and prodded regularly, feed him food that just is not quite up to Mom's cooking standards, and then gave him a medication that totally strips away all ability to cope with any of this stress.  That is what we get with steroids.  I guess patience must win over the frustration of the situation.  It's not fair to him to treat him with anything less than love and kindness since the odds are stacked against him to be able to cope well with what is happening.  Each cycle of chemo has about a week long course of steroids associated with it.  Sigh.  That's a lot of patience to develop:)