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

This is an update on Jonas, Don Nolte's grandson.  If you wish to read the whole thing, it follows this shortened version.  The short story is that Jonas took a trip to a special hospital in Houston.  While he was there he got sick, but the cancer doctor at the hospital was able to help him.  The tumor has shrunk some, but there is a long way to go and a lot of treatments.  He is back in KC now and is doing relatively well. 
Peace to all!




Posted 58 minutes ago
We are back from Houston!
I have to first mention that I'm sorry we didn't journal while we were there. I need a computer or laptop to make entries and we did not take one with us. We had access somewhere at the hotel, but we did not have time to juggle that. I have so much to record that it may take me more than one entry to get it all in!
All in all, it was a very good trip. Thanks again to our neighbors Karen and Bill Atkins who made our flights possible! Every detail about flying -ticketing, boarding, attendants, transporting, went without a hitch. Continental Airlines made flying with a Cancer patient very accomodating. We would highly recommend them. On the way down to Houson on Wednesday, Jonas experience a great deal of stomach upset and threw up at the airport, on the plane and in our taxi about five six times. Upon arriving at the hotel, we realized (with all the medical needs we had to pack) we had forgotten the feeding pump! Kind of crucial to feeding the guy at this point. His stomach was so upset, even painful, with nothing in it, that he was throwing up all the medicine we were giving him. He tried to eat, but couldn't keep anything down. Neither the hospital in Houston nor our medical contacts here in KC were helpful at all about getting us replacement pump! Nothing for loan, lease, or replacement. In fact, they all seemed oblivious about what company we could find to help us attend to that situation. I was beside myself. Joel an all over the hospital looking for the right department to handle our situation. Jonas was tired and weak and way past due for all his pain meds... and had thrown up all the ones he had had only hours before. The only recommendation our medical team at Children's Mercy could offer was to take him to the Emergency Room because, at this point, he was likely to be neutrapenic. I checked him and he had no fever, but we had no other options. We called Dr. Hughes's office to tell him that we were going to the ER there at MD Anderson and got some surprise news. Two nights a month, he works the chemo division of the ER and he was there at this very moment! So we packed up and went right over.

Before ever meeting the man, we had heard very little about him and knew mostly only what we had read. We knew that he had given lectures here at Children's Mercy several times and had met a nurse who had done some training under him in Texas. The only insight we had to him is that he was a scientific specialist and a teaching doctor, which as I understand, means he does his own experimenting and publishes in medical journals. We had also heard that he was great with kids and kind of on the chatty side. Well. Have you seen the movie Patch Adams? He actually kind of resembles Robin Williams and is that kind of a doctor...only not as goofy or unprofessional. He is the first doctor that talked DIRECTLY to Jonas. If we interupted, he would answer us by talking to Jonas. Don't get me wrong, he talked to us too, but we were used to being at a Children's Hospital where he was treated like a child. (Not that that is bad! We were and are very pleased with all our experience with Children's Mercy.) He calmed Jonas in a way I had not yet seen, and he is now Jonas' most favorite doctor. It didn't start out like that though.
When we arrived at the hospital, they checked him in and put him in a room. Dr. Hughes introduced himself and learned that we were behind on getting him his pain meds. One of them is a shot I have to give Jonas in his leg every evening. Upon hearing this, he put some numbing cream on Jonas' leg. (it takes about 20-30 minutes to work) After about 5 minutes, he said, "okay, let's just do this." Jonas about freaked out and shot daggers from his eyes at me, pleading me to stop him. I asked the doctor to wait, but he smiled and told Jonas, "Its really not that big of a deal" laughing it off. He had Jonas look at the ceiling and count backwards from 100 by 7's. When it was over, Jonas had toughened up. It set the tone for the whole ER visit.
From about 11pm we spent 5 hours there getting fluids and meds in him, and having blood drawn for labs. The two of them became quick friends talking about all matter of things from cancer to sports to science and other teen boy things moms aren't privy to. He talked to us about adding some other medications regimen that would help Jonas put some weight on. (We were back down to 87 pounds after this chemo. So he NEEDs it!) Around 4am we were sent back to our hospital room. He was also kind enough to push back our 8am office visit to 10:30. So we quickly caught up on sleep.
He was there the next morning, bright-eyed and bushy-tailed, freshly dressed and as jovial as ever. And after visiting the office, we were so very grateful for our time with him in the ER. Our office visit was useful and thourough, but also sandwiched in between all the other patients waiting in line to see him. Had we not spent the evening conversing with him, we would not have gotten to know him so well or been able to ask all the questions we wanted to ask.
He sent us with medical students to see a variety of doctors from eye specialist to head and neck surgeons. Our day was so full the never did get to sit down for a meal, but ate our meals in waiting rooms. To our suprise, Jonas drank Ensure instead of getting it through his feeding tube! From the early morning on, Jonas had new life in him. He volunteered, most of the time, to walk or push the wheelchair rather than riding in it. (Thank you to Susan Murphy who is letting us borrow her wheelchair. A perfect fit!) I could tell he was taking a new vested interest in his condition and was doing most of the talking with ALL his doctors now. That alone is giving him confidence, spunk and a more positive outlook on cancer and his treatment. We could not be happier!
The surgical team decided that although the opthamologist recognizes that there is enough information going into and coming out of his eye and might be reversed, the tumor has ahold of it in a very bad postion futher back on the optic nerve. It is not in place were they can safely operate to release it. We were hoping something could be done to give him his vision back sooner than later, but that is not to be. Jonas seemed to take that information in stride. They were very realistic with him that while they hope to get it back while killing the tumor, there is a real possibility that it may never come back. Even if it does, it may be completely destroyed by the radiation he will get. Not what he wanted to hear. For a kid that loves to play baseball and wants to learn how to fly a plane - that stinks! (If you have ever seen the movie Little Miss Sunshine - you know what kind of reaction I was ready for.) He sucked it up and stayed positive.
That night he had his first MRI with contrast since his cancer was first identified. They wanted to check images side-by-side with his original MRI to see if the tumor has shrunk. (shrank?, shrunk? has shranken? lol. I never could figure that one out = ) Anyway, we found out Friday morning that it HAS! Yay!!!
We visitied with the Proton Therapy specialists Friday morning who showed us the head to head comparison. The tumor has dimished in some areas. Not so much in others. They told us they had aleady confered with Dr. Hughes and want to begin Proton therapy asap. This post is getting really long so I will divulge what all that means tomorrow.
I will end with saying that we finished out trip with our first sit down meal of the entire stay at the hotel restaurant, which was pricey and not worth the expense. Lesson learned. We then hopped into a taxi and had a quick and very uneventful flight back home to Kansas City.
It was good to be home. Brette and Blaire left for a float trip with Amber Dahm and the James family on Friday morning so they weren't here to greet up. We hear they are having a lovely time and that Blaire has latched on to Jonas' baseball coach, Shawn James. How sweet. It's only fitting since Jonas thinks the world of him, too. = ) Lovin' that.
More soon...........

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Posted 23 minutes ago
I am so happy that things went well. I keep you in my prayers every night. Sounds like another success. My prayers are that his eyesight be restored. That this cancer that has gotten ahold of him be taken away. My prayers for the family is that everyone gets through this burden and that God grant you comfort that things will be okay.
I hope that you find some PEACE in every day.
Love Aunt Stephanie
Welcome, donnie

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