St. John's Group Email update on Jonas (Don Nolte's grandson)

Well, the first week of chemo is almost complete.  The upset stomach and constipation have run their course and Jonas is feeling much better today.  Whether it be real or perceived I don't care, but he feels that the pain in his face and head are diminishing a bit,too!  That could be an indicator that the chemo is having an effect on the tumor---making it shrink .. or let go.. or has got it in a full-nelson,.. something!  Yesterday afternoon he walked the halls again, worked with a physical therapist, and sat in a recliner for almost an hour.  He watched a small portion of contraband video brought by one of his friends, even though tv normally still gives him a headache.  All a good sign.  At one point he thought he was getting some shadowy vision back in his left eye which turned out to be wishful thinking.  This morning he confirmed that it is not at all so.

More great news.  Jonas will be headed to MD Anderson in Texas earlier than expected. Originally, Children's Mercy had made arrangements to transfer him there if and when he reaches the surgical phase at the end of ALL his chemo treatments, which is almost 8 months down the line from now.  However, as we looked more and more into the radiation phase, we learned something very interesting about MD Anederson.  They offer a form of radiation that is not available here.  It is called Proton Therapy.  I need to research it more thoroughly, but I think I have a basic understanding of it, which is this.  PT is equally as effective as basic radiation, but it is more advanced than basic radiation in that it more directly targets the cancer itself with less collateral damage to the surrounding structures.  MD Anderson only accepts specific cases that are special needs for the location of thier tumor, and Jonas fits that criteria.  Traditional radiation would be done by a machine that is placed up against Jonas' head (most likely the cheek and jaw area) and radiation is beamed through to target the tumor.  Because of the location of Jonas' tumor there would most certainly be damage to his left eye, left ear,his jaw, his teeth, his tongue,his sinuses, his pituitary gland and even his brain.  Proton Therapy would not eliminate (I don't think) the chance of all damage, but would drastically make a difference to the severity of damage to all those other features.  If ever there was a case where PT should be used, this is it!
Sooooooooooooooo.... Looks like we might be in Houson just in time for Halloween.

Jonas got his Fight the Fight bracelets last night and LOVES them!  He is sending most of them to grandparents and family out of state, but shared a few with some his favorite nurses, too.  When I told him about the Pancake Breakfast and that some of his teachers were going to wait tables he didn't believe me, but ended up saying, "That's so cool... I wish I could go. " lol

He mentioned last night that this year he missed stings camp and robotics camp. Two of his favorite summer events.  And asked me to double check with Mr. Morales about the chance to see the final concert on video.  If you can go, the concert is today at 1:00 at Pleasant Lea Middle School.  I heard there are LOTS of LS kids there this year.  Should be awesome.

I will post again tonite. Too much for one sitting. = )

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5 Message(s)

Posted 36 minutes ago
Jonas I have been thinking about you a lot and I was in Houston this past week and was near the MD Anderson building.  It is huge!  I took a picture of it and sent it to Lizzy and I believe your mom saw it too.  The Proton building is pretty close to as well.  You better start working on your best Texan impersonation!

You have all the right weapons to beat this!  You have the strength of a pitcher and the mental toughness of a wrestler.  With this combination this tumor doesn't stand a chance.

I should be in the KC area next week and I will come by for a visit.  

See you soon,

Uncle Scott
Posted 3 hours ago

Hooray for the good news of MD Anderson!!!  Keeping you in our thoughts and prayers constantly!  Glad you were able to get up and move some.  Hoping you can get a little better rest with a bit of relief from the pain.  Love and hugs coming your way!!!
Posted 3 hours ago

Oh my goodness this is amazing news! I read these to my mom and we both just light up when these messages just get better and better. The news about getting to Texas earlier is very possibly the best news yet! Of course we are all waiting for the best news down the road :) When you make it to Texas we will have to keep in close contact because I will be in Texas this Christmas and I could definently make a stop by to see how everything is going and bring anything you need!! Keep up the strength! "Jesus said...'Do not fear, only believe.'" - Mark 5:36
Posted 3 hours ago

Hi Jonas, I wanted to let you know that my daughter Victoria who is going to be a senior at LSHS this coming year is in robotics.  She loves being involved in such an neat group, I will tell her that you have an interest in robotics and we will keep you posted on the robot that will be built this year.  It is always very neat to see students build a robot that completes a certain task at competition.  Thinking of you today and praying for you to beat this!
Mrs. Utter
Woodland Elementary
Posted 4 hours ago
I would love to wait tables as well!  Just let me know what I can do to help!  Glad that TX has some good options.  I am so happy that his pain is getting better!

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