One Month Later

October 22nd, 2010

Another LONG overdue update, this one in bullet point form…

- Our time in North Carolina was very nice and we’re now back home in Wisconsin
- The transplant went off without a hitch and was much easier on Julie this time around
- Joshua and Timmy are both doing very well
- Early test results haven’t shown any significant changes for Josh, which was expected
- More tests will occur in another month or so and hopefully we’ll beging to see signs of benefit from the “booster”

We’ve got lots of great memories, stories and testimonies from North Carolina and I just don’t have time to capture them all, so I’m going to choose one. As I already shared, God provided a wonderful home for us to stay in for free while in Durham. The home was owned by a church and used as outreach to people like us who needed a place to stay while getting medical treatment at Duke. You may remember that Timmy has to get weekly injections of medicine that is helping to sustain his immne system while he waits for the Gene Therapy trial and/or a divine healing. You may also remember that neither Julie or I are fond of giving the shots, so we’ve had a couple nurse friends doing them for us at home.

So in North Carolina, the question arose: Who would give the shots? I decided to email the church and explain the situation to see if perhaps they had a nurse who was a member that might be willing to help. Within a couple of days I had a response from someone willing to help. As if that was not enough of a blessing, it turned out that not only did this wonderful sister-in-Christ have a passion for missions and had been to Africa, but she was also born on the EXACT same day is Timmy (June 19)! SO like God not only to provide, but to add His own little personal exclamation point to it.

Looking forward, in addition to monitoring Joshua’s post-transplant progress, Timmy will also be making his first trip to NIH in November. This will just be a preliminary visit to give NIH a chance to see him, do some blood tests and some other basic testing to make sure he will be eligible for Gene Therapy when he reaches the required 22 lbs. Joshua will go to so they have a chance to follow up with him after his extended stay this past spring.

So much more than that going on with all of us of course, but that’s all I’ve got time for now and probably all you’ve got time to read anyway. :) I’ll leave you with the latest edition of “Timmy Talk” (below), recorded just today after school. Timmy sure likes his brother!

Many Blessings,

Clark, Julie, Joshua & Timmy

Admission Day

September 22nd, 2010

Greetings again from Duke Children’s Hospital. Timmy is getting his IVIG this morning and then this afternoon, Joshua will be admitted in preparation of his transplant tomorrow. Other than getting an IV line put in for the infusion, he and mom will just be hanging out this afternoon and tonight as I take Timmy home to keep him in relative isolation. Julie will stay in Josh’s hospital room tonight and then be admitted Thursday AM at 7:00 to get ready for the bone marrow harvest. The infusion of cells into Joshua takes place later in the day (evening I think) so they will keep him until Friday AM when Timmy & I will come back and pick mom & Josh up.

As I’ve mentioned before, this procedure is hard only on the donor (Julie). Please pray for her:

- safety and protection in surgery and under anesthesia
- that there would be no intense nausea
- that she wouldn’t need a blood transfusion
- that she wouldn’t have the intense pain afterward (all based on her past experience)

For Josh, just pray that the infusion of more of mom’s cells will produce the desired result: improved immune function and ultimately, complete healing from his immune condition (SCID).

I’ll leave you with some new pics and video of Josh at the museums and beach and mom & Timmy here in the hospital this AM.

Blessings,

Clark (Julie, Josh & Timmy)

SDC13792SDC13827

 

 

 

 

 

 

SDC13836SDC13838

 

Timmy Talk

September 14th, 2010

Greetings once again to all. Updating the blog turned out to be a little more challenging than I thought it would be. Our only option for Internet at the house we’re staying at is a temporary dial-up account. Uploading pictures or video and updating this blog through that connection is out of the question. I think the Flintstones had a faster internet connection.

Fortunately, there really hasn’t been much to report. Everything we’ve done to this point has been just routine preparatory testing and that’s all gone just fine. We’re pretty much just waiting for September 23rd, which is Josh’s transplant date. He will be admitted on Wednesday the 22nd (still not 100% sure why), Julie will come in on the 23rd for the “harvest” and then Josh will receive the infused cells by IV later in the day. I think we’ll all be back “home” the night of the 23rd. Then if all goes to plan, we just hang around here for a couple of weeks to see how Josh responds.

There is really no significant risk for Josh in this procedure. Either the “booster” transplant will improve his function or it won’t. Because he’s already got mom’s cells working in him again, there’s no chance of any sort of reaction like “Graft Versus Host Disease”. The transplant will likely be harder on Julie, who will have general anesthesia for the bone marrow harvest and was pretty sore for quite some time after the original transplant in 1999. So pray that it goes well and she experiences some supernaturally quick healing and recovery.

Josh has been meeting with a teacher every weekday to help him keep up with his schoolwork. He likes her a lot and he’s very good at going right after his homework so he can have the rest of his day for whatever.

Timmy is doing very well. He’s becoming a little more regular and continues to work towards sleeping through the night. The house we’re staying in has three bedrooms, so we’ve each taken one with Timmy sleeping in Julie’s room. This has allowed me to get some consistent sleep for several nights in a row for the first time in several months and for this I’m very grateful. I’m still pretty tired, but I feel like I can see the light at the end of my sleep-deprivation tunnel.

We’re all VERY grateful for the home we’ve been given to stay in while we’re here. It’s called the “Temple Home” and it’s owned and used as an outreach ministry by Temple Baptist Church here in Durham. We are not being charged to stay here and have been treated to some wonderful hospitality by some of TBC’s members. Perhaps in my next update I can post some pics and/or a video tour of the Temple Home. It’s small, but it’s very nice – really perfect I’d say – and Joshua said yesterday that it already felt like his home. :)

I’ll leave you with a wonderful video that Joshua took last night of Timmy talking just before bedtime. It had us all with tears in our eyes from laughing.

Blessings,

Clark, Julie, Josh & Timmy

On the Road Again

September 5th, 2010

Yikes! Another 6 weeks gone by without an update to the blog. Heavy sigh…

SDC13648Hope everyone’s having a great holiday weekend. I just wanted to let you know that we’re on our way to Duke. We went as far as Indianapolis last night where Timmy spent his first night in a motel in the same city where I got the call at 1:30 EST on 6/19 letting me know he would be born. :) Today we drove about 5 more hours and have stopped in Hurricane, West Virginia. Yup, “Hurricane”. About 5 hours left to Durham, NC tomorrow.

We’ve been majorly blessed to be given the (free) use of a “host home” while at Duke.  It is a home owned by Temple Baptist Church in Durham that is used for families that have to come to Duke for treatment and it happened to be available for our stay. Yeah God! It could have cost us $1,500 easily to rent something furnished. We’ll be staying there already tomorrow night.

Josh & Julie will have a preliminary appointment on Tuesday to get the ball rolling on Josh’s “booster” transplant, which is scheduled for September 23rd.  I guess it takes a couple of weeks to get results on some tests that need to be done.

I can’t remember how much detail I’ve already shared about what we’re doing down here, and I’m pretty tired, so I’ll keep this update short and sweet. If you’ve got questions, feel free to ask them and I’ll probably get into a little more detail in my next update from Durham.

Blessings,

Clark, Julie, Josh & Timmy

Days Gone By

July 27th, 2010

All I can say is “wow’!  Can’t believe it’s been well over a month since Timothy was born and since our last post. Here’s some of the highlights of the few weeks.

Timothy

 Our little “Timmy” is already 5+ weeks old and doing great. He seems to be responding well to the medicine for his immune condition and he is putting on weight at an impressive pace.  Born at a “robust” 8 lbs 3 oz, as of this morning’s weigh-in, he’s already put on 3 lbs (app. 11-3).  So we’re very pleased with that. We’re still keeping him fairly isolated to be safe and probably will continue to do that for another month or two.  Then if the docs are happy with his immune studies, we’ll probably relax that a bit.

SDC12107

He seems to have some issues with gas, but other than that, he’s a very beautiful, content little guy. He’s still a bit nocturnal at this point, so Julie and I are switching off on who stays up late and who gets up early. Both of us are pretty tired (we ARE in our forties you know ;) ), but it’s a small price to pay to have another little bundle of joy around.  Timmy’s arrival was very much a dream come true for Julie and she is relishing life as a newborn’s mother.

We’re still planning on entering Timmy in the Gene Therapy program at NIH as soon as we are able. He has to be a minimum of 22 lbs before starting, so we’re probably looking at February or March at the earliest. Josh probably wasn’t 20 lbs until 18-24 months, so it’s hard to know what to expect from his brother.

Joshua

SDC13151As you know from our “Mammoth Cave Adventure”, Josh hit the ground running upon his return to Wisconsin and pretty much hasn’t stopped. After Timmy was born, Julie suggested we pay his cousin Rebekah a visit at their cabin in Hayward over the July 4th weekend. Taking Timmy wasn’t a good idea of course, so it was just Josh & I for the extended weekend. Other than a nasty case of “Duck Itch” on my feet, it was a very pleasurable weekend. Since then, Josh has spent most of his time either inviting friends over or going to their house. He’s very excited to have a brother and has already been a great help to Julie & I with him, but Timmy hasn’t quite reached “playmate” age yet. :)

Joshua’s health continues to be very good. They have been getting blood draws from him weekly and the results continue to support the decision to remove his PegADA medicine.  His liver enzymes have been good several weeks in a row now and while his “toxic metabolytes” continue to fluctuate a bit, they’re definitely better and moving in the right direction.  Earlier this month he and I returned to NIH for a couple days for a follow-up visit.  After our appointments, I took him on a little adventure on the Metro, going north from NIH just a couple of stops for our first ever visit to a “Dave & Busters”.  Oh my gosh, seriously, it’s like Chuck-E-Cheese, Las Vegas style. We both had great fun playing games and Joshua was thrilled with the prizes he was able to bring home.  I’m glad they don’t have a “Dave & Busters” in Madison, though I saw they just opened one in Milwaukee so I suppose it’s just a matter of time.

As well as Josh is doing, his immune system is not fully functioning. He has never had any significant B-Cell function SDC13212and his lymphocyte numbers and function could be better. As you may know, Josh had a bone marrow transplant at Duke in 1999.  For about 3 years it looked like it had worked and then suddenly in March of 2002, it seemingly failed and for the past 7+ years, he’s been on the PegADA medicine. Then in March of this year, just before beginning Gene Therapy at NIH, we were all surprised to find that somewhat inexplicably, the maternal cells from mom had started to work again. Because of this discovery and because Josh has fared well after his NIH isolation and the removal of his medicine, AND because of the aforementioned room for impreovement in his immune system, Josh’s doctor at Duke believes that he could benefit from receiving a BOOSTER bone marrow transplant, again using his mom as a donor.

The “booster” BMT is pretty much what it sounds like. They harvest more of mom’s cells and give them to Josh (via infusion) in the hopes of adding function to what he already has.  It’s less complicated than a full-fledged BMT and it sounds like it only requires about a month at Duke this time around (we were there for 5 months in 1999). SO…

We are tentatively scheduled to arrive at Duke (Durham, NC) on September 6th and the harvest and transplant would SDC13185take place on September 23rd. In addition to the displacement issues, we’ll also have the issue of Joshua missing his first month of 6th grade. Not ideal, but in the grand scheme of things, it’s not a tough decision. :) We’re hoping to have someone at Duke that can help keep up with school like they had at NIH.

Speaking of NIH, Josh & I will return there for another follow up on August 11th. After that. we’re not sure how they’ll handle NIH follow-ups for Josh since he will be getting treatment at Duke in September. NIH would also like to see Timmy at 3 months. Not sure if Julie would do that while we’re at Duke or if they will wait until closer to 4 months in October.  As usual, there is never a dull moment logistically.

Mom & Dad

As mentioned before, Julie and I are tired and happy. Timmy is really a mega-blessing to all of us. We continue to try to go with the flow with all the logistical, displacement, insurance, financial… issues and challenges. God has given us a tremendous support system in himself and in an incredible network of family and friends. Thanks so much to all of you who have supported us in any way through this season of our lives.

With the displacement coming in September and another 4-6 month stint at NIH on the horizon, employment issues continue to be a significant challenge.  Ideal employment for me would be computer based work that I could do from anywhere, so if anyone has any ideas or leads for me in that regard, please send them my way.

Many, MANY thanks again from the Osborn’s!

Clark, Julie, Josh & Timmy

I’ve Got a Little Brother!

June 19th, 2010

Welcome Timothy Daniel Osborn! Born today, Saturday June 19th at 5:11 PM at St Mary’s Hospital.

SDC12079

Big Adventure Finishes With A Bang!!!

June 19th, 2010

SDC12068I haven’t had time to post on day 5 of Joshua’s Mammoth Cave 2010 Adventure because we got a call last night at 1:30 AM EST in Indianapolis that mom’s water broke and she was on her way to the hospital. So we packed up and headed home, arriving at St Mary’s at about 6:00 AM.  Labor with Josh was only about 5  1/2 hours, so we weren’t sure if we would make it in time. But this time around, things are moving a lot slower and as of 4:00 PM Saturday, Timmy hadn’t graced us with his presence yet. Sounds like it will be within the hour though.

Blessings,

Clark, Julie, Josh & Timmy

Mammoth Cave Adventure Day 4: The Cave

June 18th, 2010

SDC12013After a fine night of sleep and a MOST excellent breakfast, we headed out Thursday AM for Mammoth Cave National Park. We got there over an hour before our 10:30 tour time just to make sure we had the tickets I ordered online the night before. After getting the tickets quickly and without a problem, we did some souvenir shopping in the gift shop of the Mammoth Cave Hotel.

After the obligatory warnings and disclaimers from our tour guide, we hopped on the tour bus for the short ride to the entrance for our tour. We took the “Grand Avenue” tour, a 4 1/2 hour tour that was about a 4 mile hike and 4 hours in the cave.  I found the majority of the tour a bit anticlimactic. There were some narrow passageways that were pretty cool and the size of the cave is pretty impressive (it is mammoth you know), but the majority of the tour wasn’t particularly awe-inspiring.  But the boys loved it all and the tour ends rather spectacularly at “Frozen Niagara”. 

SDC11979I visited Mammoth Cave in April of 1971 (when I was 7), but the only thing I had just a vague memory of was the Snowball Lunch room which was about an hour into our tour (and about 2 hours after our big breakfast).  Other than the spectacular finish at Niagara, I think the highlight of our tour was a resting spot where the guides demonstrated what total darkness and total silence was like.  It really was a “wow” moment and unlike anything I had experienced before.

Our guide shared a few stories along the way. The best one had to be about the guy who was on the same tour we were in 1993. He was towards the back of the pack taking a lot of pictures and he felt like the trailing guide was rushing him. So he found a spot where he could duck in undetected and the guide passed by him without seeing him. His idea was to hang back and join up with the next tour that followed.  What he didn’t know was that there wasn’t another Grand Avenue Tour that day!

The way the tours work is that the lights on the trail ahead get turned on by the guide in front and then turned off again by the guide at the back. So this man ended up sitting in that total darkness and total silence for 24 hours! Worse yet, the day of his tour was the day before his daughter’s wedding so he ended up missing it the next day. :(   When they found him on the trail, he was banging two rocks together to make noise. He said it wasn’t the total darkness that bothered him so much as the total silence.

SDC12027We got back to the visitor center right at 3:00 and after a couple stops, found our way back to Horse Cave and our Hampton Inn where after a late lunch, we spent most of the rest of the evening in the pool/pool area. Got the boys to bed early since we were going to lose an hour on Friday going back to Indy and the “Carribean Cove” waterpark.

We’ll be headed home first thing Saturday AM, so it remains to be seen when I’ll get around to posting on Friday’s fun. Graduation party Saturday afternoon and then Sunday is Father’s Day, so it might be Monday.  We’ll see I guess.

Blessings,

Clark & Josh

P.S. – The short video below is from a point on the trail where the guide chose Joshua to plug their “Wild Cave” tour where they do a lot of crawling through small spaces.

More from Day 3 at the Indy Zoo

June 18th, 2010

Three more videos for anyone who may be interested. The first is of the boys petting the sharks. The second is up and close with a walrus with an itch and an attitude. The last is of the penguins. It’s a little hard on the eyes thanks to the water on the glass and a shaky videographer.

Mammoth Cave Adventure Day 3: Indy Zoo

June 17th, 2010

SDC11956Wednesday was Day 3 of our adventure and we checked out of the motel and headed to the Indianapolis Zoo. We tried (to no avail) to get there early since the forecast was for a lot of sun and 86. As it turned out, thanks to a nice breeze, a lot of shady areas and lots of stuff to see indoors, it really didn’t matter.

Among the zoo highlights were the seals and sea lions (video below), a dolphin show, an underwater dolphin viewing area, shark petting, penguins, a walrus, a polar bear and a couple rides on a small roller coaster. We’ve got a lot of video from the zoo and I’ll be working on getting some of it on YouTube. My connection at the hotel doesn’t seem to allow for quick uploading, so I’ll have to wait til I get home to do most of it.

 SDC11931We left the zoo around 2:30 to head out for Kentucky and Mammoth Cave. Other than a slight delay in Louisville, the trip went very smoothly and we arrived just before 6:00… or so we thought.  Turns out this part of KY is on Central Time, so it was actually only 5. It was nice to pick up the extra hour, though since we’re headed back to Indy on Friday, we’ll lose it again.

The highlight of Wed for me was the Hampton Inn we’re staying at in Horse Cave, KY. It was a big time upgrade from our Days Inn in Indy and I got a normal night sleep for the first time in about 3 months. Yeah! :)

Today (Thursday) was Mammoth Cave day, but I’m afraid once again you’ll have to wait until tomorrow to hear about that. It’s time for me to get this posted and see about getting another good night of sleep.

Blessings,

Clark (& Josh)