Archive for September, 2010

Admission Day

Wednesday, 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)

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Timmy Talk

Tuesday, 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

Sunday, 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