Dave had his appointments back at Iowa City today (thanks for the ride Dan!!). They did the usual blood draw and x-rays. The white and red blood cells were in good range, and his level for dilantin was low so they increased his medication dosage. And the x-rays showed there were a little more tumors growth in both lungs, Dr. Link, Dave's Oncologist equates it to where Dave was about 2 to 3 cycles ago, so that was discouraging but Dave made the comment that he does not regret taking the time off from chemo to take the trip to Disney, "it was well worth it and I do not regret it at all, although I won't be taking time off for some time now but I have the memories we just made in Florida". What can you say but agree with the guy! I am happy that he felt good and thoroughly enjoyed the whole trip. The minor setback on Monday he said was just a minor inconvenience. I told him it didn't inconvenient any one of us, we took a break that afternoon and that was just fine with all of us.

Dave wanted me to let everyone know how much he appreciated the encouragement, help, prayers and well wishes for the trip to Florida. Northwest never did reimburse or help with any reprieves for our rescheduling of the flights ( I may send a personal letter myself here shortly). Disney, however, has kudos from us for the generosity and understanding of unexpected medical events....... they will forever have our respect and support!

I will be scanning some of the pictures we took on the 35mm cameras and upload them to the site soon. A special thanks to all of those who donated to the David Kokjohn Fund. It was very much appreciated and it's really hard for us to believe how much love and care there is through all of this. We truly feel there are a lot of very good people out there.

Dave will be posting shortly personally so you all can get his personal account of the trip! We love sharing our stories of the trip, so there may be more of little tips and hints for those who may be visiting Orlando on some next entries.
God Bless,
Kim

We all got back in late yesterday evening, minus one luggage! They knew where our luggage was, unbeknowngst to us it was left behind for the next plane ride home, apparently the luggage compartment was full and we were one of the last people on board so they randomly pulled one of ours off and it arrived at our door step some time in the middle of the night.

The girls are glad to be back and said they actually missed school and their friends. Dave and I too are glad to be back, it's been an exhausting but fun filled week and we also needed the break from the Florida sun, hahahaha. We had beautiful weather the whole week, sunny and a little over cast but mostly between 85-89 degrees. It rained a couple of times in the late afternoon for about 10 minutes, just enough to cool you off.

We ended up staying at the Port Orleans Resort - Riverside the entire stay because they were so hospitable and we were getting spoiled with the transportation and services we were getting. On Friday, we all did the down time at the pool at the resort. Actually it was kind of funny because Thursday night all the girls mentioned about just doing NOTHING on Friday, of course Dave and I agreed to that and that's pretty much what we did, slept in until 11am and laid out at the pool, also took an evening boat ride to "Downtown Disney" to check out the market place and entertainment they provided near the lake. Saturday was spent at the ocean. We also took our time that day, renting a vehicle and heading towards Cocoa Beach but not where all the vacationers go but down about 10 miles to where the locals hang out, we saw all kinds of surfers and just regulars hanging out at the beach. Overall it was wonderful, wasn't crowded at all and that's the way we wanted it! We all walked up and down the beach collecting sea shells, which was one of the funnest things to do and then me, Aly and Sammy went into the water a little deeper to have fun in the waves and I think somebody out of the group always have to meet up with the creatures of the sea. I got stung by a jelly fish! I know that is one encounter I would not like to have happen again!

Overall the trip was great. We didn't do everything we had originally planned or talked about and it turned out better than we had dreamt about other than the one problem Dave had on Monday afternoon. I still have yet to figure out how to download the pics from the digital camera, so once I get to that I will be posting some new pics. We really wish we could let you all view the video tape of Jessie and her run in with Rafiki and his BLUE BUTT. Dave did get his "tanned" head that he wanted, matter of fact I think we all got about a few shades darker out of the ordeal. The trip allowed the girls to figure out who their "favorite" character was, Aly's was Pluto, Sammy's was Mickey Mouse (fantasia) and Jessie's was TinkerBell.

A big thanks to everybody who pulled for a great trip for Dave and his family, we all had a wonderful, magical vacation, one I know that none of us will forget.

The Kokjohn's have been having a blast visitig all the parks has to offer, it is just impossible to see everything in the few days we have been here but we sure have had lots of fun seeing everything that we did from a lot of the characters to some of the highlight shows of each park.

Yesterday was the most eventful, from Jessie's run in with Rafiki (which we caught on video!). The first part was spending time seeing and getting signatures from the characters and when we got to Rafiki, After Jessie got her signature, she quickly disappeared behind Rafiki only to come running back up and shouted loudly "He's got a BLUE butt!", the crowd just roared, we had tears from laughing so hard. A couple of other kids had to go around and check out his "blue butt" too, we all couldn't stop laughing. Poor Rafiki tried looking behind but he couldn't see so all he could do was look at us and shrugged. You have got to know Jessie and her sudden outbursts of funnies, she is one to come up with the funniest things and we finally caught it on tape.

Shortly after that incident we were getting ready to head back to the hotel for some R&R and as soon as we got near the front, the thing we feared that could happen to Dave did happen. He called out my name and said it was happening again, Dave had a seizure in the front of Magic Kingdom. Fortunately it only lasted for less than a minute and he was conscious the whole time. The people at the park reacted immediately, we had the EMT, security and Disney Managers all around us and even innocent bystanders help me and the girls out. The magic and wonders of Disney is everything that we could have dreamed about and more. The people were very responsive and Dave in the scale of things had a small seizure and recouped very soon after, I went to the nearest store to buy a hat for Dave(he was being stubborn, wanted to "get a tan head" while in Florida) while the EMT were asking Dave some questions while I was in there the manager must have followed me in, I was still in disillusion that this just occured and still shaking, while I was getting ready to pay for the hat, the gentleman told me the hat was on them and when I got back to Dave to give him his hat, some of the other managers had given Jessie and Sammy a Mini Mouse each and looked at Aly and asked her who her favorite character was and she said Pluto so they quickly went and fetched a Pluto and gave it to Aly. We were so grateful that the Dave was ok and the generosity and care that the people of Disney offered our family. We also were given a personal ride back to our resort. I of course called Dave's doctor immediately and they had suggested that they wanted to check his Dilantin leve (anti-seizure medication), so we called the front desk of our resort and they immediately dispatched one of their personal EMT to take Dave to the hospital. It turned out his levels were low and they had to administer him some more of the medication through IV, which in all he ended up staying in the emergency room for about 4 hours.

The people at the resort has also been wonderful in accomadating our family from the incident, they had a personal van take me and the girls to the hospital to pick Dave up, the young girl's name is Rianna, she not only did her job she went out of her way to talk and play with the girls. While I was in the back with Dave, Rianna was playing in the back room made for kids, she was sliding with them. The young girl made our girls happy, kept them busy and made them forget why they were even there. The manager at the front desk, Alfredo and a desk clerk, Debbie were most helpful also. They allowed us to extend our stay at the resort another 2 days to help Dave's stay to be more enjoyable and also gave the whole family complimentary hopper passes to get back in the parks for an extra day.

Dave and I can't even begin to thank all the wonderful Disney people enough for all the care and hospitality they had given us. To all, we definitely praise and recommend for anyone to stay at the Port Orleans of Riverside. The resort is beautiful and has all the ammenities anyone could want. There is so much more we have experienced in the last few days, but I think anyone who has ever been to Disney can understand the magic that Disney has to offer. It brings us joy to see the girls smile and just plain be kids. I was hoping that we were able to go through this trip without any incidents so that Dave and the girls didn't have to worry or think about his sickness but inspite of the unfortunate situation, everything has been wonderful. Dave has been completely enjoying himself and has commented, oh every few minutes, "how much fun he is having with everybody". This sure is the most magical place on earth!

Arrived in Orlando late Saturdy night didn't have time to go to the parks so we headed to "Downtown Disney" and ate at the Rainforest Cafe, that took a while so we weren't really able to hit anything else there but learned what we will be doing the next time we get back. When they say "if a person normally gain about 5-10lbs during vacation", I think this is going to be a 15pounder! The girls were smiles from ear to ear and Kim and I enjoyed seeing their excitement to be in the Magical World of Florida.

Today involved a visit to MGM studios and the rides and events "to do" are: The Hollywood Tower of Terrors, Rocking Roller Coaster featuring Aero Smith, Star Tours (Star Wars Simulator) and the Indiana Jones Stunt Show. While Aly, Sammy and Kim were on the roller coaster, Jessica and I were heading back to do the star wars thing again but we caught the parade instead, the parade consisted all the disney characters from Mary Poppins to Lilo Stretch. The highlight of this had to be when Buzz Light Year looked over at me and did the "Do rub" to the head and I did the same gesture back with a big grin! :-)

We're back at the hotel, Sammy fell asleep and we're just trying to regroup and decide how we're going to end our night. Kim may figure out how to download the pictures from the digital camer and upload them to this site if she figures it out in time before we decide to leave.

We just got back from a whole day excursion in Iowa City, started off in the morning at the radiology center getting teeth imprints and head imprints for preparation of the radiology surgery treatment for the late afternoon(these are necessary to help aid in keeping his head as steady as possible). Dave also had an appt. at the cancer center for a checkup before leaving on our vacation, the doctor said he was good to go. The treatment started a little after 5pm and lasted about an hour without much consequences, Dave said he felt tired and actually fell asleep a few times, so they had to go in wake him up and reposition him for the treatment, other than that things went pretty smoothly. Afterwards he said he had a headache wasn't sure if it was caused from the aparatus helping his head keep still or caused by him wanting to sleep because he felt tired. Next checkup for this this treatment will be in 3 months for another MRI to follow up. Well, I'm praying for a great vacation without anymore hitches for the family, we're going to sunny Florida, let's hope the weather will cooperate with us as well! Thanks for all the prayers and support.

We would like to thank everyone for their advice and help but we were still unable to get Northwest to budge on giving a reprieve. HOWEVER, we are STILL going on our trip to Orlando and Tampa. We are scheduled to leave Saturday for a little over a week and we are all planning to have the time of our lives. The most important thing to me was to make sure this trip happened for Dave and the girls no matter what, extra costs or whatever, we were going to go without much more delays. Actually, things worked out great for leaving Saturday, it'll give Dave a chance to recoup from his radiation treatment (even though the doctors said Dave will feel no effects of the treatment) on Wednesday and after looking at the weather forecast for the Orlando and Tampa area it was calling for rain and overcast weather the majority of this week.

Although the doctors are feeling very confident with the procedure tomorrow, I am obviously still feeling anxious and asking for all to be thinking or praying for tomorrow's procedure to go well as anticipated. Thanks for everyone's concerns and care, you are all very much appreciated.
God Bless,
Kim

->defraying increased airfare to Florida and other trip expenses:

i am quite sure there is significant desire by all of Dave & Family friends that absolutely nothing stops or even just complicates the planning of their Florida trip. unfortunately Dave's seizure has complicated both the planning and finances involved in this trip. the Kokjohns do not need this added stress!!! i have written a check for $150 in an attempt to help counter the effect of recent developments. i invite everyone to send any dollar amount they feel comfortable with to help facilitate this trip and indeed allow it to be a dream trip!

please make checks out to David Kokjohn and mail them to:

Walgreens

David Kokjohn Fund

1703 Park Ave

Muscatine, IA 52761

NOTE: DO NOT MAKE CHECKS OUT TO WALGREENS!

(only with significant arm-twisting has Kim allowed this note to be posted. it was not her intent in posting `Help! Any ideas with Airline rebooking?' to come across as saying, `Help, please send money')

posted April 05 by kirk

We are having difficulty rearranging the airline bookings without excessive penalties at this point (5 times the original cost we booked at per person, there was another option where we would be flying into Tampa vs Orlando but the cost is still almost 3 times per person). The Northwest agent I spoke with today was sympathetic and nice but unfortunately has no control on rearranging without cost implications. If anyone has any ideas please let us know either on posting, email or if you have our phone numbers, please let us know before Monday morning what is even feasible. Our thought is there's got to be some reprieve for Dave's case, something has got to go right!! Can't they just honor our original tickets at the same price but allow us to go 2 days later?????
Right now, our next step is to wait till Monday morning for me to talk with my company travel agency and see if one of them is willing to speak with a NW airline agent to plead our case.

Thanks for all the prayers and support. The seizure, which was pretty major in magnitude, fortunately did not cause any damage. Dave is actually feeling and looking pretty good, just gave us all a really big scare....and they say your kids are what causes a person's hair to gray, I think Dave's out to prove them wrong. I would like to thank Barb, she was there when Dave had his attack, I couldn't imagine what it would have been like with the girls around having to witness their Dad go into seizure, and GOD knows how I would have been myself. She reacted immediately and helped him get the care he needed, as she explained the eventful situation to me, it was a pretty traumatic situation but she was able to compose herself and deal with what was going on......there must have been a reason that he didn't have the seizure here, he was just at the house an hour before that occured.

The MRI did prove the 2 spots they saw on the cat scans were indeed lesions, the tumors did metastasized to his brain, and actually the MRI showed there were 3 spots in all, the 2 (about 1 1/2cm in size) they saw on the scans and they picked up a 3rd, it was 1/5th the size of the other 2. Dave is scheduled to go in for a steriotactic radiation treatment to the 3 lesions on Wednesday at the Univ. of Iowa. This procedure is a one time, one day treatment, it is using a large radition machine that will precisely be beamed to the lesions. The radialogist oncologist feels very confident they will be able to go in and effectively treat/zap the spots without side effects, he even assured that this a very simple procedure and pain free, it'll be like going through a scan, just need to lay still.

I'm sure you all can imagine the relief that Dave and all of us here feels that radiation treatment is even an option, things seemed very dismal Friday night when we first learned about all of this. Dave was determined, come hell or high water, he was still going to take the Disney World trip, and of course I was going to be there to support him in any decisions he made. The amazing thing is the doctor said this procedure will not effect him flying or even going on roller coasters!, other than we are trying to reschedule our trip to leave 2 days later than first planned.

I'm sure there's more that I have left out but that sums up what has transpired in the last few days. Of course there are still dangers and we are keeping a close eye on Dave with another seizure attack, the dotors say it is unlikely since they do have him on precautionary medications for it, but nonetheless, we are being very careful until the procedure this coming Wednesday.

Thanks again for all the wonderful support, this would be a much harder journey if it weren't for all the wonderful, caring people in the small community of Wilton, and even Muscatine!
God Bless and keep the prayers coming, I and many others would like to see this trip happen for Dave and our girls.

I am so lost with words right now so I'll try to do my best. Dave had a seizure tonight, and was rushed to the local hospital. They did a brain scan and found a couple of spots on his brain where they feel that the tumor has metastized to. Dave is stable and is up and talking, and trying to reassure me he is ok and that things will be ok. Dave is being ambulanced to the Univ. of Iowa Hospital now, Alyson our oldest daughter went along. I am home with the 2 littles ones nolw to let them sleep and we'll be visiting Dave in the morning. Barb is going to be at the hopsital with Alyson and Dave. Barb will call me with the results of the MRI tonight. The brain scan isn't as clear of a reading as an MRI, so they want to confirm if the 2 spots are tumors or not. I'll will keep you all posted. Please pray for Dave and his girls, I feel so horrible, Dave wanted me to go ahead and post this tonight.