Duke Trip

Tricia and I, along with this beautiful little girl, are traveling to Duke this evening, and then back home on Wednesday afternoon. Both Tricia and Gwyneth have their usual appointments, and we're praying for nothing but good reports. I'm committed to not checking personal email, facebook, twitter or anything else on our trip (although, I may have scheduled a blog post to hit sometime tomorrow...) so that we can make the most of our time together, so, I'll see you on the flip side.

Thanks!

Nate

7AM

Leaving at 7am this morning for a two day trip to Duke...lots of appointments, even one for me. Praying for a safe trip, good reports and even a little time with some great friends.

Nate

Driving To Duke

Gwyneth has appointments on Tuesday and Wednesday at Duke, and we were originally planning on driving to Durham tomorrow. But, Tricia hasn't been doing well the past several weeks, and the past few days have been worse, so we're driving to Durham tonight and heading to the hospital early tomorrow morning.

Unfortunately, the transplant team can't fit us into their schedule, so she'll have to go to the ER (yeah, doesn't make much sense to us either). As I mentioned, Tricia's been having some issues for a while now, and she's certain that something is wrong, but nothing has shown up on any tests or scans so far. We're hoping that she'll get the attention she needs and that they'll be able to diagnose whatever is wrong.

Thanks for your prayers as we travel.

Nate

Heading To Durham Today

We'll be on our way back to Durham this afternoon for some appointments for both of the girls tomorrow (Wednesday). Tricia has her TX clinic and Gwyneth has an appointment with her pulmonologist. I'm assuming that this clinic will technically be Tricia's one-year clinic/checkup, and we're praying for great reports and would appreciate your thoughts and prayers as well. Hopefully, we'll be home lat Wednesday night!

As a side not, Tricia had to pull out her PICC Line a few days ago when it started leaking...no pain or anything, but it will be a hassle to place a new one if she needs it (she will need another one at some point...just, hopefully not this week).

Thanks!

Nate

...And Back Again

Back to Duke today and tomorrow (we should be on the road when this post appears)...Tricia has her bronchoscopy this afternoon (the one that was canceled because of her vocal chord surgery), and then her CF clinic tomorrow. She was feeling tired and was coughing up some crud last week, but seems to be doing much better the past few days. Hopefully we get a good report and our on our way home before too late tomorrow afternoon. Thanks for the prayers!

In other news, our new clothes dryer finally arrives today...so, we can all stop wearing our undies inside out!

The icicles in the pic below are hanging from our outdoor trashcan...I think they were about 5 inches long. Although several people guessed correctly, Kori was the first...BUT, she said "I'm guessing a flower pot or a trashcan" so I can only give her 43.5 CFHusband points for splitting her decision (BTW, the 43 points are as useless and the .5 points).


Here are a few pics of Gwyneth on our kitchen table to make this post a bit more interesting...



Nate

Celebrate!!!

This week is going to be all about a very special birthday girl, and, obviously, you're invited to help us celebrate!

We'll be in Durham on the 7th and 8th for some appointments for both Tricia and Gwyneth, and we'll be celebrating with some old friends at Duke.

We're planning a party with our family sometime later.

We have a few surprises that I think you'll enjoy.

And, of course, I'm putting together a video or two.

Check back in often to help us celebrate!!!

Nate

Sick Baby

Gwyneth has her first cold (which is amazing at 10 months old). Lot's of nose snot and eye boogies and a little bit of drainage and coughing. Fortunately, she was already scheduled for an appointment with her ped today...the doc said it's only in her head and not in her chest, so we'll just keep her nose clear and wait it out and let her build up some antibodies.

Also, Gwyneth was weighed today...11lbs 12oz!!! She has literally gained about one pound per month since January, which is great.

We're heading to Durham this afternoon. Tricia has two appointments at Duke tomorrow, one with her TX team and one with the cancer docs. We're assuming we'll be told what the next step is for her lymphoma treatment, but at this point (having waited over a month for this info), nothing would surprise us. With Gwyneth in tow, you may not hear from me again about the latest news until Wednesday night or even Thursday morning.

Thanks!

Nate

This Week

Sorry I haven't been updating much lately...have been focused on work, house-buying business, and spending as much time with my girls as possible.

We're headed back to Durham on Tuesday morning. Tricia has a few consults, and then the biopsy on Wednesday. All outpatient, so we'll be spending the night together in the hotel, and hopefully coming back home by Wednesday night.

Thanks.

Nate

Friday Morning Update

Tricia is getting her bronch right now...I'm in her room waiting for her to return. Gwyneth is hanging out with Grandma at the hotel.

The docs told Tricia this morning that she should be discharged sometime between Monday and Wednesday. Because she's feeling so much better, and the medical team believes they have her infection under control, Gwyneth and I will be heading home this afternoon...either Agnes will stay here in Durham and wait for Tricia's discharge, or she'll head home as well and I'll return early next week (depending on what Tricia wants).

Thanks!

Nate

Leaving For Durham

We're leaving now...Tricia is not doing well. She's having a hard time breathing, can't cough up the junk that's building in her lungs. We're going directly to the hospital, and there's a chance Tricia will be admitted.

Thanks.

Nate

Big Week

Tomorrow kicks off a big week for us. We'll be heading up to Durham sometime in the second half of Monday. Tuesday is filled with appointments...we'll find out how well Gwyneth is doing, and know how well this chemo is taking care of Tricia's lymphoma. Tricia has a few appointments with the transplant team on Wednesday morning, and then we're hoping to head home.

We've been praying for several weeks that the next few days will bring great news.

Tricia was in bed since last night until just about an hour ago...her chemo side effects are kicking in strong, and I'm guessing she's still feeling sick from this sinus thing. She's coughing up junk.

We're hoping that Tricia won't have to be admitted into the hospital, but we're taking extra clothes and baby gear in case (because you never know).

Also, Tricia's sister, Megan is flying down to hang with us and help me balance time between my girls schedules.

We also need to get a bit of "big city" shopping in, for things that we can't find here on the OBX.

Thanks for your thoughts and prayers this week. I'll update when I can...

Nate

This Week

Tricia and Gwyneth will be traveling to Durham early tomorrow morning with Tricia's mom. Both of my girls have appointments all day. Tricia has her second round of chemo as well as a transplant clinic, and Gwyneth has an appointment with her preemie docs.

We're praying that the transplant clinic shows that everything continues to look good, especially concerning rejection. We're also praying that the chemo goes well, and that, when we return in a few weeks for an exam, it will show that the treatments are killing the cancer.

We're praying that Gwyneth has grown to, at least, 8 lbs, and that her all of her blood work shows that she is as healthy as can be.

And, of course, we're praying that everyone will travel safe and be home again by tomorrow night or Thursday morning at the latest.

Yesterday, half-way to Norfolk, VA for Gwyneth's eye appointment, our car's computer decided that it wanted to confuse our transmission and cause problems. We had to turn around and take the car to the mechanic. It should be fixed and ready to go by Wednesday afternoon, but we'll have to rent a car tonight so that everyone can get off to Durham by 4am tomorrow morning. We've rescheduled the eye exam for later in the month.

My Band is playing at Kitty Hawk Kite's Watermelon Festival all day Thursday, so I'll be staying on the beach (in case Tricia gets "stuck" in Durham for more than a day). BTW, the Watermelon Festival is a huge family event that KHK sponsors every year...proceeds go to a few national and local children's charities. We're scheduled to play from 11am to 2pm, and the weather looks to be perfect.


Thanks for your thoughts and prayers this busy week!

Nate

Back To Duke

Late this afternoon, we'll be driving back to Durham/Duke for a few much anticipated appointments for both Tricia and Gwyneth.

Tricia will be having her follow up appointments with the cancer team to discover if the past four rounds of chemo have been effective. The expectation has been that the treatments will have wiped the lymphoma out of her system, so we're keeping our hopes up. She'll also be seen by the transplant team again, and we're also hopeful for continued good news. What we're unsure of is how the cancer and post-transplant issues will continue to balance themselves, particularly with her meds and the efforts to ward off rejection. Some good news...Tricia has been told that she'll have her feeding tube, which she has had (and which has been incredibly helpful) for the past 18 months, removed...she is very excited.

Gwyneth will be seen again by the special infant care doctors. I have been very optimistic over the past few weeks, as it appears to my untrained eyes that her breathing and development seem to be progressing very nicely. She continues to be on and off the oxygen as needed, but I can really tell a noticeable difference in her work of breathing. She is also eating more and more, with greater ease and stamina, and she is beginning to discover that she can suck/lick on her hands and fingers if she can hold them still in front of her mouth for long enough.

All of this will be taking place from Tuesday to Thursday, and, without any major surprises, we should be back home by Thursday night. We'll be making good use of the time outside of the clinics to get some things done in the "big city" that we can't do on the OBX, and we hope to see a few friends as well.

BTW, I simply have not had any time to work on pics from the other evening, but I promise they'll be on there way in the next day or so!

Thanks!

Nate

Good 24 Hours

Tricia's first chemo treatment went very well. No side effects except for a slight temperature rise which she didn't even notice. We're hoping that they'll allow us to do the remainder of her 4 week treatment somewhere closer to home instead of having to drive to Durham once a week of the next month. She was released shortly after the injection was done, and we spent a good night at the hotel before heading home yesterday.

Gwyneth is doing very well with extra O2 and meds. Her breathing is back to normal, and she is able to eat more...we're guessing she's probably up to 6.5lbs now...I'm taking her to grocery store to weigh her on the deli scale later today...

Our trip yesterday went very well. Got off around 11:30 and arrived at my parents' house by 3:30. Gwyneth did very well...we only had to make one pit stop this time. It's good to be home again, and we're praying hard that we won't need to go back to Duke for more than a one-day outpatient appointment for the next few months.

When we arrived home Tricia had my belated father's day gift waiting for me...I won't tell you what it is yet, but if you check in tomorrow morning, I promise I'll have pics and and stories to tell about it. I can promise you that it's basically the coolest father's day gift any dad has ever gotten, so don't miss it!

I also picked up Meka yesterday (thanks, again Don and Frank!!!), and hopefully she's with us full-time again, as long as we can keep from any extended trips to Duke. She doesn't seem too interested in Gwyneth right now, which is fine with us because she can be high energy and a little reckless when she gets excited. Ralphie is still hanging with Grandma until we get a place of our own...I think they're both pretty happy with that arrangement.

To top it all off, I got to practice with the band last night for just the second time since December, which is always one of the highlights of my week!

I have some family in town...my uncle and aunt and cousin...we're going to hang out with them tonight. Tricia's family begins to trickle in late tonight and throughout the weekend. She's looking forward to spending lots of time with them all at the beach house they've rented for the week and introducing everyone to outside-of-the-hospital Gwyneth. I'm looking forward to getting a full week's worth of work at the church, and hanging with the Kirschner clan in the evenings!

Anyway, that's a quick update. I've been so busy the past few weeks, that I haven't had a chance to take many pictures, but I promise this next week will produce a lot of new and fun pics. Here are a few pics of Gwyneth and I goofing around with the Mac a few days ago.









Thanks!!!

Nate

Strike Two

They were able to do a biopsy during the bronch, but it looks like the samples they pulled are useless, so they can't yet determine if it is cancer or something else. This means that Tricia will be scheduled for a surgical biopsy, hopefully no later than the first of next week.

This also means that she's basically in the hospital for literally no reason until then, except, to be discharged, even if we were to stay in Durham, means probably pushing a surgery date further back, which isn't the best option. All they'll do over the next few days is check her vitals and give her her normal meds, which is what we do at home. She won't even have an IV.

All that to say, we're both very bummed. Being in Durham, we've discovered, is incredibly easier and more enjoyable when we're all at "home".

Thanks again for your thoughts and prayers...we'll continue waiting to see why God has us here.

Nate

Killing Time

When Tricia's original PET Scan was rescheduled yesterday morning, we had some time to kill, so we walked over to the Duke Gardens for an hour.





I've posted some more pics of the gardens over on my Photo Blog!

Nate

Plans

It seems that our story is far from over.

We received a call from Duke this past Wednesday that the Epstein Virus (Mononucleosis) has been found in Tricia's system. This in and of itself is not necessarily a horrible thing, but on Thursday we received another call telling us that there are some growths in Tricia's lungs. These growths could be the first signs of a common type of cancer called Post-Transplant Lymphoproliferative Disorder that develops in post-transplant patients, brought on by the mono virus because of the immunosuppressant drugs Tricia is now taking.

We'll be driving to Duke early Tuesday (tomorrow) morning to get a clinic visit in for Gwyneth, who has been breathing a little heavy and fast the past few days. It does not appear to be affecting her in any way, but it's something that needs to be checked out just in case.

Tricia has a PET Scan early Wednesday morning. She will probably also have a biopsy (where they'll remove a small part of her lungs). Hopefully this can be done via a bronchoscope. If not, they may need to perform a surgical biopsy. She'll most likely be admitted as an in-patient on Wednesday as well, hopefully for no more than a few days.

They should have a diagnosis within 24 hours of the biopsy.

If she indeed is diagnosed with PTLD, they will consult their oncology specialists to take over administering the Rituximab, which it is generally given weekly for a month or so.

It could all just be a fungus infection, but it appears pretty suspicious for the PTLD.

This is not something we were aware could happen (not that anything really surprises us anymore), and to be honest, we really don't know much about it or what could happen from here. The idea of going back to Duke and being in the hospital is not something that we really want to think about right now, as it really messes with our plans. We're not sure how long we'll be in Durham, but we're hoping we'll be back within a week.

So, once again, we find ourselves in an unfamiliar, and very scary place. But, if we have learned anything during this incredible journey, we’ve learned to simply trust God.

When I am at my weakest, He makes His strength most evident.

I'm believing more and more that, after this part of our journey is over, God will still be Who He is, no matter the outcome. My plans are only worth anything if they are God's plans, and thankfully, His plans are always perfect.

Jeremiah 29:11 (The Message)

I'll show up and take care of you as I promised
and bring you back home.
I know what I'm doing.
I have it all planned out -
plans to take care of you,
not abandon you,
plans to give you the future you hope for.

We have no reason to doubt that God is still in control. Thanks for your thoughts and prayers this week. I'll let you know when we know more about both of the girls.

Thanks!

Nate

Long Day

Today was very, very long.

But, if all goes as planned, it will be our last day in Durham.

We should be home tomorrow.

Nate

Update

We are loving having Gwyneth home with us! It's been amazing to see the timing of everything. Had she been discharged earlier, Tricia would have been too weak to do much with her. If she were discharged closer to when we are hoping to go home to the OBX, we wouldn't have all of this time to spend focused on her. God continues to bless us.

The trip home was very good. A video camera met us on our way out, and I've heard rumors that we were on ABC11 again, but I missed it and haven't found it yet on the website (I'll let you know if I do find it). Gwyneth was sleeping by the time we made it to the car, and she slept all the way home.

The whole first 24 hours was a little strange as both Tricia and I kept consciously looking/feeling for all of the monitor feeds that have been strapped to her for all of those weeks...it's incredible to be able to pick her up and carry her around anywhere we want to. When we got home, I sat in the glider with her and started crying.

She came home with several meds and a few breathing treatments. Everything is to help her as she continues to catch up with her development. She has what is called "Chronic Lung Disease", which basically means that her lungs are still underdeveloped (for a newborn 4+ weeks after the due-date), a very common thing for a micro-preemie. It sounds a lot worse than it is...she has a little trouble catching her breath when she's very active, and should grow out of it within a few years. It should have no affect on her continued development.

She has breathing treatments just like Tricia did with her CF, with some of the same drugs that Tricia has been on. She should hopefully be done with the breathing treatments soon. (and, because I know somebody's going to ask...again, Gwyneth does NOT have CF)

All that means that there is a little more to remember to do than with a normal infant. All of her meds are liquids that are mixed in with her food. She's eating ad lib, which is about every three hours. She was transitioned completely off donor breast milk and onto formula over her last few weeks in the NICU, and other than a little gas (which is also normal), she is doing great with her feedings.

I've been feeding Gwyneth throughout the night, letting Tricia get the sleep she needs to continue recovering, and for the most part, she is sleeping well and letting us get plenty of sleep. Agnes (Tricia's mom) is here for a while to help as we adjust to life as three, which has been a huge help. With Gwyneth's minimal medical needs, and Tricia's continued needs, it can be a little crazy to remember everything and maintain a sense of normalcy, but it's been going very well.

We had our first outpatient Pediatric appointment on Friday. It was just the two of us as Tricia was at PT. Everything continues to look great, and her doc (who was seeing her for the first time) said she looks very developed for her history. We have another peds appointment tomorrow, and an appointment with a pediatric pulmonologist later in the week....it's actually the same pulmonologist that followed Tricia when she was a child at CHOP.

There is always a chance that, if she gets sick or has a setback, she'll be back in the hospital, but every day improves her chances of not having that happen. We are still praying that we'll be able to go home to the OBX within the next 3-4 weeks when Tricia finishes up her PT.

A few highlights from our time home...

> I took her for a walk outside our hotel the afternoon we got home (she was wide awake) and showed her things like her first tree, her first sidewalk, her first cloud, her first helicopter, and her first hot tub. She was very impressed.

> Her first trip to Babies"R"Us. She basically wanted everything...slightly annoying, but she'll learn soon enough to do that kind of thing only around the grandparents.

> Her first episode of SportsCenter...I was sure to point out Mia Hamm and the NY Mets. I'm teaching her to spit at the TV with me whenever the NY Yankees and Dallas Cowgirls make an appearance.

That's basically it. My email is still not sending, so don't sweat if you haven't heard from me in the past few days...hopefully I can get it fixed tomorrow. I'll post some pics when I get a chance.

Thanks!

Nate

40 Minutes of Sunshine

(written on 5.13.08)

So, I received an email from Jessica Claire a few months back telling me that she was following our blog and wanting to know if we'd be interested in having a photo shoot with her...

Don't know who Jessica Claire is? That's OK, because neither did we...until I checked out her blog and discovered that she's basically one of the best photographers in the world (according to popphoto.com, and I agree).

Anyway, Jessica has family in the RDU area and was in town this weekend for a visit...and, of course, we said "YES!" to her offer. This kind of opportunity doesn't come around very often!

The forecast for yesterday was "partly cloudy with a 20% chance of rain". It was raining and cold when we woke up. It was raining and cold when we left to drive to meet Jessica.

As we pulled up to the shoot location, the clouds parted and the sun came out. For 40 minutes, the weather was perfect.

As we entered Elmo's Diner for a late breakfast, the sun disappeared...it never showed it's face again for the rest of the day.

And, we all got to spend some time with Gwyneth later that morning as well! That's what I call a perfect Mother's Day/Birthday gift for Tricia.

Here's Jessica with Gwyneth...

Thanks, Jessica! The Photos (amazing!) and the time spent getting to know you (also amazing!) are such a wonderful gift!

Nate