St. John's Group Email Update on Jonas: from Don Nolte

From Don Nolte:
 

As it turns out, chemo treatment delivery is rather uneventful.  Somehow I had pictured them taking him to the "chemo station" where they hooked him up to a frightening machine or a team of doctors entering his room, turning on bright lights and administering some grizzly technique of secrecy.  But the nurse comes quietly into your room, just like when she adds any other medication to your course of treatment, explaines what she is doing, hangs the chemicals on the iv pole, and feeds them into your iv line. Done. As our doctor explained, Jonas will be taking 5 different chemo drugs. 3 one day, 2 two the next, 3, 2,3,2 for about a week.  Then he will have about a week off.  The first part of that second week is likely to be the worst.  His white blood count and electrolytes and his immune system will all be out of whack and he will be at his weakest.  The second part of that second week he will be on the upswing and starting to feel better.... and them bam.  Just as he is starting to feel better, they start back to week one.
This is the reality of chemo.  He will follow this routine for 6 cycles of chemo, roughly 12 weeks.

Cancer is a mass of rapidly dividing cells.  The job of the chemo medicines is to seek out the rapidly dividing cells in his body and destroy them.  That is why most people lose their hair during chemo.  Hair is made up of rapidly dividing cells at its roots.  So the chemo zaps it.  There are many kinds of chemo for different kinds of cancers and each one of them have their own side effects.  Vomitting, severe constipation, hair loss, mouth sores, pain swallowing and digesting, more jaw pain.  These are some of the things Jonas will have to endure.  So far, he has been vomiting every 2 hours since Monday night when he began his treatment.  He's a tough guy and has been a trooper about it.  The real issue the nurses are vigilant about is keeping him regularly going to the bathroom.  They don't want the chemicals to get backed up in his bladder or bowels.  They can be trapped in there and damage or burn his insides causing more irritation and possibilities for infection.  The problem with trekking to the bathroom regularly is that getting up makes him dizzy, sick to his stomach, increases his headaches, and robs him of his sleep. They have some great pain and nausea medicines to help with these issues, but they have their own side effects as well.  So you can see how one avenue of care plays on another.  It is almost overwhelming.  Last night, when he was so exhausted after throwing up, while I was cleaning around him, he called me back over to the bed, put his arms around me, held me close and said, "Mom, I hope you don't ever get cancer."   Ohhhh....my boy.

Jonas had a few exiting moments over the weekend that should pay off for him in the near future.

 First, Audrey Lanier was able to get his skype account set up for him on his iPad!   Yay!  He's not up to interfacing yet, but has told me he is looking forward to it,.

Second, Jeffery Burrow and Jacob Bullimore were able to get his xBox live up and running!  You should have seen his face when he opened his eyes and saw the image on the TV.  A smile came to his face and his hands rose up into the air as if he had a controller in them, thumbs at the ready!  Half a dozen people in that quiet little room erupted with laughter.  Unfortunately, he didn't have his headset at the time and will have to wait for healthier days now.

Finally, Jonas was treated on Sunday evening with a visit from State Representative Jeff Grisamore.  He came because he is a good friend of the disability community and he, himself lost a child to a rare childhood illness years ago. He met with Jonas and then sat down with us to tell us about the foundation he belongs to as well as several other non-profit organizations that help families and kids struck by rare illnesses.  He was a wonderful resource and friendly, caring man.   Thank you to Amy Brockelmeyer for helping us to meet him.