Mammoth Cave Adventure: Day 2 in Indy

June 16th, 2010

SDC11839After a fine continental breakfast at our motel, it was off to the Children’s Museum of Indianapolis. The museum is billed as one of the largest in the world and it did not disappoint. At least not much anyway. CMI boasts 4 different levels of attractions from my favorite the “Dinosphere” on the lower level to the “Science Works Science Port” on level 4.  One of the main attractions for the boys was a “Star Wars: The Clone Wars” exhibit that proved to be a little less than we were all expecting. But all the other things to do and see there more than made up for that and we would highly recommend the stop for anyone with kids driving this way or even for a 2-3 days get away. We made it to Indy through Chicago in right around 5 hours.

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We spent about 5 1/2 hours at CMI and then headed out to find another amusement place called “Xscape” that Josh found online. Unfortunately, when we got there we found it closed for a week or two as it had been recently purchased by another company and was undergoing some renovation. Naturally, the boys were a bit disappointed, so it was back to Snapper’s for another round of jumping, games, bowling and laser tag.

Another round of severe weather rolled through Central Indiana about the same time as the night before. If we had left about 10 minutes earlier, we would have beat the storms back to the motel. Since this time there was a severe t-storm warning for our county, we got off I-65 and found cover under the entrance to a nearby hotel. Winds were pretty strong and the power in the hotel went out while we sat there, but all in all it really wasn’t too bad.

After something to eat, the boys managed to find enough energy for another pre-bedtime swim. They were both out pretty quick when their heads hit the pillow and I spent more time than I probably should have uploading pics and video and writing yesterday’s post.

Day 3 (today/Wed) was spent at the Indy Zoo and then traveling to the hotel in Horse Cave, KY where I’m writing this now. The boys have been swimming for a couple hours now and should get to sleep a little earlier tonight as we’re not doing anything else. Depending how things go, I may create today’s post yet today or I might just keep it a day behind.

Happy Birthday Mom/Wifey!!!

Blessings,

Clark & Josh

Mammoth Cave Adventure, Day 1

June 15th, 2010

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So I’m already a day behind on this and I have no idea if or when I’ll catch up, but here goes anyway. Josh and I and his good buddy Spencer left Cottage Grove Monday AM to drive to Indianapolis, the first stop on our Mammoth Cave adventure. We’ll be in Indy for two days, highlighted by trips to the Indianapolis Children’s Museum and the Indy Zoo. I’m told that the former is one of the largest of its kind in the world.

We got to Indy around 4:00 local time (I completely forgot that Indiana was EST and we would lose an hour). The timing was good as we arrived just after a severe t-storm had blown through and about 1 hour before a tornado crossed I-65 up at Lafayette.  After getting settled at our hotel, we headed out for a local biz called “Snappers Fun Zone” (or something like that).  The boys had a great time which unfortunately had to be cut a little short by another round of storms. There were tornados north and south of Indy, but all we saw was really heavy rain.  We hit it about 5 minutes before getting back to the hotel and drove the remainder of the way like everyone else: very slowly and with the hazards on.

Our long day finished with a late dinner and even later swim and I’ll leave you with a couple videos from the day (below). The second one is all of 11 seconds b/c the camera battery died. :(

Blessings,

Clark (Josh & Spence)

There’s No Place Like the Road

June 15th, 2010

Joshua and I arrived back in Wisconsin via the Van Galder bus due to the cancellation of several flights (incl ours) out of O’Hare. So Julie picked us up at the “Park-n-Ride” despite the presence of these conspicuous looking characters:

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Conspicuous Looking Characters

 Of course they turned out to be our very good friends who had dressed up special just for Joshua’s return.

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After a nice homecoming with Pumkin, Esther & Jessie (Josh’s cats), we enjoyed a meal with friends and posed for a gaggle of photos that were being taken by a Wisconsin State Journal photographer. They’ve been working on a story about Josh & SCID that I believe will run next Sunday for anyone who’s interested.

Then Sunday AM we got up to travel to Eau Claire for a graduation party of one of Josh’s cousins. After almost 3 months away from home, we managed a whole 18 hours or so before hitting the road again!

 Upon our arrival in Eau Claire, it took Josh all of about 2 minutes to find his way past all of the greetings of everyone who was so happy to see him to the highlight attraction of this party: the rented inflatable fun house thingee…

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It was great to see so much family together in Eau Claire. Josh had managed to connect with some of his cousins on Skype from NIH, but this is the first time people had seen him in person since March, so it was fun to watch.

After about 4 hours in Eau Claire, we turned around and headed back to Cottage Grove to get packed for Joshua’s next “big adventure”: a 6-day trek to Mammoth Cave in Kentucky. He and I have been talking about it ever since Josh visited Cave of the Mounds 3-4 years ago. We wanted him to be able to do something special after his NIH confinement and this is what he chose. So after another 12 hours or so at home and a follow-up blood test at Dean Care on Monday AM, Josh and I and his good buddy Spencer hit the road once again for our…

MAMMOTH CAVE ADVENTURE!

More on that in our next post…

Blessings,

Clark (Josh, Julie & Timmy)

Free at Last!

June 14th, 2010

SDC11757As most of you know by now, after 81 days in an isolation room at NIH, last Friday Joshua got sprung! Then on Saturday, he and I flew back to Madison. Well, actually we flew to Chicago, had our flight cancelled and took the bus back to Madison, but home is home. :)

Josh remains off his medicine and seems to be doing well. They will continue to monitor him with weekly blood tests and we’ll be going out to NIH for follow ups once a month for awhile. A trip to Duke for a “booster” bone marrow transplant remains a possibility, but for now, it’s off to Mammoth Cave and to enjoy summer for awhile.

Hopefully you’ll see some posts, pics, video along the way.

Below is a less-than-spectacular video of Josh getting out of his room. I had the camcorder in one hand and the laptop in the other so that mom could watch live on Skype.

 

Many Blessings,

Clark (Julie, Josh & Timmy)

WE ARE OUTTA HERE!!!

June 10th, 2010

Josh will be discharged from his room tomorrow and we are leaving Saturday AM!

“Toxic Metabolytes” dropped from 19 to 10.8 (goal is under 10:)

I hope to have a little more complete update before we leave, but I just wanted to let everyone know.

Thanks again so much for all your prayers, thoughts, encouragement & support.

Blessings

Clark (Julie, Josh & Timmy)

Preparing for Take-Off

June 8th, 2010

Guess we’ve kind of slacked off updating this blog again. :(   A thousand pardons!  Hopefully you’re on our e-mail list and have been receiving regular updates.

The last couple of week have seen Julie return to Wisconsin (last Wednesday) and Joshua’s test results being anywhere from good to gone. Most of you know we’ve been watching two things in particular: liver enzymes and toxic metabolytes.  Last week we saw a nice drop in liver enzymes on Tuesday, but then an increase on Friday. Then to complicate matters, the FedEx plane carrying blood that is sent to the lab at Duke in Durham, NC (where Josh was originally treated) broke down and was a day late, making the blood unusable for the toxic metabolyte test. So we were resigned to staying another week.

After speaking to the lead doctor last Friday, it sounded like if Josh’s numbers looked good this week, they would not be opposed to my taking Josh home this Saturday. So tentatively, we are booked on a flight back to Wisconsin this coming Saturday. :)   Our actually being ON that plane will be contingent on:

1- A postive result from the toxix metabolyte test. Three weeks ago we saw our first drop after the expected increase that followed the removal of Joshua’s medicine. Then two weeks ago, it went back up a little. Then last week we didn’t get the results b/c of the plane trouble.  So this week they would like to see that those levels have dropped and/or are dropping again.

2- A continuing downward trend for liver enzymes. They’ve gone up and down quite a bit but the overall trend is clearly down. Good news here is that today’s test came back with a nice drop, from 75-61 to 66-51. The high end of normal is 55-45, so we’re getting close. We’ll test again Friday, but it sounds like they’re pretty comfortable with liver enzymes. The doc said that if they were going to shoot way up again they would have done so by now.

3 – No surprises. There are other things they’ve been watching (neutrophils, t-cell proliferation, etc.) that have been looking good. If there was a signficant change for the worse in those, we might have to reconsider the Saturday departure. (Neutrophils were “status quo” today :) )

So if you’re looking for prayer requests, that pretty much covers it. :)

We hope to know by Thursday and I’ll certainly update when we know more.

Thanks again!

Clark (Julie, Josh & Timmy)

Parole Denied

May 28th, 2010

Just a quick note to let folks know that it doesn’t look like Josh & I are coming home with Julie next Wednesday. :( His test results today showed that his liver enzymes were about the same (76,68 instead of 73,73) and that his “toxic metabolytes” levels had gone back up this week. Last week’s drop is still an encouraging sign, his liver enzymes have been coming down for a couple of weeks now, and other things they’re watching (neutrophils, lymphocytes…) are all looking pretty good, so the big picture is still very encouraging. But our short-term goal of coming home as a family doesn’t look like it’s going to happen.

If you pray, just keep praying and we’ll trust God with His timing.

Josh is his same old joyful, fun-loving, resiliant self.  Naturally, he was a little disappointed with today’s news, but his Grandpa always said “don’t get your dauber down” and I’m not sure he ever has. He sure is fun to be around. :) I’ll see if I can get him to do another video update one of these days.

Hope everyone has a great holiday weekend. Maybe we can ask the nurse for a tent and make s’mores in the microwave. ;)

Blessings,

Clark (Julie, Josh & Timmy we think:)

Good Reports

May 23rd, 2010

Sorry to be so long in updating the blog. I’ve sent a couple updates by email that didn’t make the blog. If you’re not on our email list and want to be, just let us know.

We had a good week with test results. While Tuesday didn’t show much change in neutrophils (they’re low, but OK), it did see his liver enzymes drop considerably, from over 100 to down in the 80-85 range. Then Friday they dropped even further (75-80) AND the “toxic metabolytes” dropped for the first time since we removed his medicine. This is a good sign, indicating that his immune system is working to supress them. There also was an increase in one of the “B Cell” measurements that the doc told me he couldn’t explain. :) So definitely a good report week. Yeah!

Now our big challenge looks to be getting on the same page with the docs about our departure date. First of all, we need the numbers to continue to improve (or just hold in some cases). We’ll have tests again this Tuesday and Friday and Julie is scheduled to fly home to Wisconsin the following Wednesday. We’re holding on to hope (however slim) that we could all go home together. I suspect that if the numbers continue to improve this week that we’ll have a conversation on Friday. I don’t think they’re going to be wild about letting Josh go that quickly, but I also expect that if we don’t speak up at some point, Josh and I would probably be out here for another month or more. Joshua’s health has to come first of course, but unless the docs are adamant that he not leave, we will all be home for his brother’s birth.

So for you praying types, thank God for good reports, pray for more like them, pray for discernment about if/when it may be time to say “sorry docs, but we’re outta here” and keep praying for Julie and baby #2 of course. :)

Josh continues to be his unflappable self. It really is remarkable how well he is handling this lengthy confinement. He never complains and almost always seems to be enjoying himself. I asked him to write something for the blog, and here’s what he wrote:

puzzledHi everyone, 

I am having a great time and simply can’t wait to get home! I’m going to be taking a trip with my dad for a week to Kentucky to do some stuff! Actually alot of stuff. I’m Going to Mammoth cave, a water park, a zoo etc. I also really miss my cats too!

Can’t wait to see you all soon,

Josh

 

Julie is fine and looking forward to being home for the last month of her pregnancy. I’m enjoying our “adventure” with the exception of my ongoing sleeping troubles. I think I managed 7-8 hours last night, the only problem was it took me 12 hours to get it.

I’m skipping most of the details on things for the sake of brevity. If anyone wants to hear more about what’s going on out here, just email, call or Skype us. If you need our Skype names, just email.

Many Blessings,

Clark, Julie, Joshua & Timmy (we think:)

Reporting Live, I’m Joshua Osborn

May 10th, 2010

Josh gives a tour of the room he’s been in for the last 7 weeks at NIH…

Time Keeps on Slippin’, Slippin’, Slippin’…

May 6th, 2010

Joshua says “sorry for the extremely, super, duper, duper, duper long break since our last post”. :)

We’re almost through 6 days of May now and it’s reached the point where we often have to be told what day it is. For those of us who can leave the room, we’re in the middle of a gorgeous stretch of weather here in MD. Three straight days of sunshine, light breezes and temps around 80. Their climate is about a month ahead of Wisconsin’s, which for me means that my allergy season, which doesn’t end until June in Wisconsin, is already over. It’s a beautiful thing.

Not too much has changed with Joshua. His liver enzymes remain elevated at last check (Tuesday). This has happened to all the kids they’ve had here that have had the same condition and had their “PegADA” medicine removed. If it plays out as it has for all of them, the enzymes will come back down within a week or two. His neutrophil counts seem to fluctuate quite a bit and in his last two tests they were pretty low. 470 one day and back up to 650 the next. I guess they’ve been in the 800’s typically in the past and we have had 2-3 results in the 1,500 range while we’ve been here.

They changed a couple of medicines today in the hopes of boosting white cell and neutrophil numbers. One of the changes required him to go to another room for a new treatment, so he had to don a mask, gown and gloves to make the journey. Julie called me to let me know it was going and she said that Josh wanted to talk to me. When he got on the phone he just shouted “FREEDOM!!!”  He’s a funny kid. :)

Julie enjoyed her time back in Wisconsin, seeing many friends and family and popping in to church. Her doc appointments and ultrasound went well and everything seems fine with the baby (other than that silly little SCID problem:). Her doc said that he’d like to see her back in Madison to stay by early June (July 4 due date), so hopefully they’ll let us all go by then.

I was happy to be reunited with my lovely prego-bride. Interestingly enough, I actually had 4 good nights of sleep while she was gone (the last being Monday night when she got back), but the last two have been lousy again. It’s amazing what a difference it makes in how I feel and in my ability to really enjoy the day. Especially these beautiful days we’ve had lately. Sigh…  The good news is, my doc prescribed some sleeping meds for me and Julie brought them back for me, so I’m going to try them tonight and hopefully they’ll work without the potential “hangover” effect that our pharmacist said was possible.

Joshua continues to handle this isolation thing like a pro. It’s been such a blessing to have people comment about what a great kid he is, how easy going he is, how well he’s coping, etc.  He really has made this easy and as fun as something like this could be.  He’s keeping up with his school work well and passes the rest of his time playing Wii, Skyping with his buddies and family, making stop-motion Lego movies, watching movies, playing with mom, dad or the play therapist or working one of his computers. The one he’s working on below is the one in the room and he also has his own laptop here.

Computer

As I said, we’re hoping to be home by June if not before. They said a week ago that it would be at least 2-3 weeks and we haven’t heard anything since. I’m sure it will have everything to do with the numbers. We would like to get home of course, but we also want to be safe and we’re also hoping to be able to come home without a lot of restrictions as to what Josh can and can’t do. He and I have been talking about a possible adventure to Mammoth Cave in Kentucky after he gets out so we’re hoping we can do that and/or stuff like that with summer on the way. So for our praying readers, please keep the prayers coming, for lower liver enzymes, higher WBC and neutrophils and most importantly, for Josh’s continued health and protection.

Until next time…

Blessings,

Clark (Julie, Josh & Timmy, we think :)