Showing posts with label Tricia. Show all posts
Showing posts with label Tricia. Show all posts

Friday, July 4, 2008

Fast Track (Updated 7.4.08)

Welcome!

So, I figured for those of you who are just joining us and don't have the time or desire to spend the few hours that it would take to read through every post here, this is a good way to learn all about us in just a few minutes.

My name is Nathan Lawrenson (most people call me Nate). On June 27, 2004, I married Patricia Suzanne Kirschner (everyone calls her Tricia), and we began our crazy life together. We have been living in Nags Head, on the Outer Banks (OBX) of NC for the past two years with our dog, Meka and our cat, Ralphie.


Tricia has Cystic Fibrosis (CF), a terminal, genetically inherited disease that especially affects the lungs. When we were married, she was showing outward signs of the deterioration that her CF was causing to her body, and, with the support of her medical team, we quickly began trying to start a family, knowing that our window of opportunity was small.

In May of 2007, after a few unsuccessful years of trying to become pregnant, Tricia’s disease had progressed to the point to where her doctors strongly advised that we stop our efforts to conceive and consider undergoing the evaluation process for the double lung transplant that could save Tricia’s life. Trusting in our doctors’ abilities and in God’s control, and coming to terms with the fact that we would never be able to have our own children after that point, we took their advice.

All this time, since before we were even married, Tricia had been praying a secret prayer…it was even a secret to me. Tricia had been praying for a miracle baby.

In July of 2007, Tricia went through the week long evaluation process at Duke University Medical Center to determine if she was a candidate for a transplant. She was a candidate, and we began making plans to temporarily move to Durham, NC to be close to Duke.

The day before Tricia was to begin the physical therapy that would prepare her to be placed on the transplant list, we found out that we were unexpectedly pregnant. Against the advice of many of her doctors, we chose to keep the pregnancy, having been told that both Tricia and the baby had less than a 50% chance of surviving.

From September through December, Tricia did physical therapy five days per week to keep her body in the best shape possible, all the while growing sicker and more dependent on oxygen. On December 27, Tricia went into the hospital for what we hoped would be a short stay. The short stay turned into a long stay.

On January 3, 2008, because of her deteriorated health, Tricia was moved to an ICU room. During this time, Tricia was getting less than one hour of sleep per every twenty-four hours. The baby was just under twenty-four weeks old (gestation) and doing as well as possible.

On January 8, Tricia was taken to the OR where she was sedated, given a tracheostomy and placed on a ventilator, with the hope that she could carry the baby for a few more days. The trach and ventilation went well, but Tricia was too unstable to return to the ICU, and the decision was made to perform an emergency C-Section. There were 75 people with Tricia in the OR that day.

Gwyneth Rose Lawrenson was born that day at 24 weeks and 4 days gestation, weighing just under 1 lb 6 oz and measuring 12 inches long.


Following Gwyneth's arrival, Tricia was placed in a medically induced coma, which lasted for nine days. She was slowly weaned off the paralytic and sedation meds until she was fully awake and aware of all that had taken place.

Tricia remained on the vent in the hospital for over four months as she slowly regained some of her strength. On February 22, less than seven weeks after giving birth, Tricia was listed and activated on the double lung transplant list. She was given a high score but was told that new lungs may be difficult to find because her blood type was very rare. In the meantime, she was walking nearly a mile everyday (with the help of a vent and a walker), visiting Gwyneth for just a few minutes each day.

On April 2, my 27th birthday, we got the call that changed our lives forever. Tricia was going to receive a second chance at life. That night, and throughout the early-morning hours of the next day, Tricia underwent the nine hour surgery to replace her old, sick lungs with a new, healthy pair.

As of July 4, 2008:

Gwyneth Rose spent over eighteen weeks in the NICU. On May 15, we finally brought her home (to our hotel in Durham). Although she still needs a small amount of O2 and remains on several medications to help her premature body grow, she continues to do incredibly well, with no major setbacks. She has amazed everyone, including her nurses and doctors. She is being fed formula, and, although she is very small for her age as a former micro-preemie, she is now growing at a very fast pace and is well over 6 lbs. Gwyneth is the joy of our hearts and a smiling baby, and we can't wait to introduce her to the all of the things that God has given us in this beautiful world!


Tricia is recovering very well from the transplant surgery. After less than three weeks in the hospital, she was finally discharged from the hospital on April 22 and is now back in physical therapy for a few weeks as she continues to gain strength. While there have been no signs of infection or rejection, she has been diagnosed with Post-Transplant Lymphoma, and is currently undergoing treatments. She is taking to her long awaited roll as a mother with as much joy, grace and determination as she approaches everything in her life.


I had literally been living at the hospital with Tricia since December, spending most of my time in Tricia's room and making several visits with Gwyneth every day, sleeping most nights at Tricia's feet, and only returning to our hotel for a little sleep and to spend some time with our dog, Meka. Tricia's mother, Agnes has been here with us for most of that time as well, and much of our family (from NC and NJ) has been spending lots of time with us here whenever they are able.

Tricia and I are slowly returning to a more normal sense of life. We are incredibly excited to have Gwyneth home, and are enjoying our lives as full-time parents. We finally returned home to the OBX in early June, and are currently looking to buy our first home. We are enjoying the summer with our families, and I am getting back into the swing of things at work.

We are forever grateful to the donor and his/her family for making the decision to give Tricia a chance to be a mother and wife (not to mention and daughter, sister, granddaughter, niece and aunt) for several more years.

We are also humbled to have this opportunity to allow God to use our story to show Himself and bring our passion for awareness of and support for Cystic Fibrosis, Organ Donation and Premature Birth to the minds and hearts of even more compassionate people.

Thank you for reading our story, and feel free to check back in as we update the blog often. Also, take advantage of the links on the right-hand sidebar to find out even more about our story.

Nate, Tricia and Gwyneth Rose


Latest Pics

With life getting busy with life, it's harder to find time to take lots of pics, which is a good thing, IMO. Here are a few pics of the past week.







BTW, Gwyneth is still on the nasal cannula, but we take it off every now and then to keep the skin on her face from becoming irritated...for some reason, most of our pics of her recently are without the O2. I don't have much else to update about her because we haven't had any appointments the past few weeks, but we have several coming up, so check back in to find out how she's doing.

Thanks!

Nate

Wednesday, July 2, 2008

Commitment

This past Sunday, our family participated in a parent/child dedication ceremony at church. We don't baptize infants, nor do we dedicate children by themselves. The dedication is mostly for the parents of a child. We have committed to raising Gwyneth in a home that is centered on God's love for her. My favorite part of our dedications is when we ask the entire church body to stand with us and pray, signifying that they are supporting us over the next several years in our journey together.

Here are a few pics from the day.





Nate

Tuesday, July 1, 2008

2nd Round of Chemo

I just dropped Tricia off at 9 to receive her second round of chemo. She should be done by noon.

Thanks!

Nate

Monday, June 30, 2008

Consult This Morning

Duke agreed to allow Tricia to receive the remainder of her treatments here on the beach, so this morning at 11am, we have a consult at the cancer center in Nags Head. Hopefully, they'll have her meds ordered so that she can receive her second round of chemo tomorrow.

On a side note, my grandparents are driving in today all the way from OK. Despite the fact that the real reason for their trip was to attend the funeral of my Pop Pop's sister, one of my cousins near Raleigh just had a new baby boy, and Gwyneth was about 2lbs the last time her great-grandparents saw her, so this will be an exciting trip for them.

BTW, I uploaded several more of our beach family pics over on my Photo Blog, if you're interested.

Thanks.

Nate

Friday, June 27, 2008

Happy Anniversary! (02)

I originally posted this video on Valentine's Day, and I thought today would be a good day to show it again...

Although you are beautiful every day before and since, this was your day to shine...I'm very certain that nobody even noticed how much time and energy it had taken me too look as good as I did.

You were the perfect bride in every way, and God gave you the perfect day to show off His creation in you to the world. Everyone tells us it was the most memorable and beautiful wedding ever, and it was all because of you. Most weddings are put on to make the bride look good...you made this wedding day look and sound and feel spectacular.

I cried that day as I vowed my life to you, and I cried again as I put this gift together for you, remembering how happy we were that day, and how happy you have made me every day since.

Thank you for loving me.

video
("Breathe In Breathe Out" by Mat Kerney)

Nate

Happy Anniversary! (01)

I originally posted this video on Valentine's Day, and I thought today would be a good day to show it again...

Tricia...you are my love, my hero and my best friend (haha). The day I became your husband was, in complete sincerity, the best of my life.

You have shown me more than I could have ever imagined, given me more than I could have ever dreamed of, and changed me more than I could have ever have ever hoped for.

You have allowed God to use you to work in my life in amazing ways, and I thank Him eternally.

Thank you for loving me.

video
("Yellow" by Coldplay)

PS. I Love You!

Nate

Today

Four years ago today, I married the most incredible woman on the face of the planet. These past four have been an adventure far beyond description or comprehension. I can't even begin to put into words, but I think these next few pics say it all....





If you'd like to say "Happy Anniversary" with more than words (and we totally appreciate the words!), please consider donating to my Personal CF Great Strides Fundraising Goal (click "click to donate" at the bottom of the linked page) to help insure that the three of us also get to spend our 5th anniversary healthy and together.

Thanks!

Nate

Wednesday, June 25, 2008

Kirschner Family Vacation (Day 3)

We spent some time yesterday evening out on the beach with a few of the kids. But first, here's a pic of Uncle Joe and Aunt Carolyn just because I haven't shown you a pic of them yet.








Nate

PS. The pics tonight went great! I'll share a few of my favorites with you tomorrow!

Monday, June 23, 2008

Kirschner Family Vacation (Day 1)

Here are a few of my favorite pics from the first day of the big beach vacation week. 22 people (including what seems like 37 kids under the age of 5) in the immediate Kirschner family (although, most of us have different last names), everyone but us and the parents and Frank sleeping at the beach house (and by "beach house" I mean a ginormous house about 100 yards from the ocean). Unfortunately, Don, Frank and I have to work during the week, so we'll miss lots of the fun, but I'm sure I'll be hanging over there every evening. Tonight, if the weather is cooperating and everyone is in a good mood, we'll walk over the dunes and take some fun family pics.

Gwyneth hanging with Aunt Janet.
Cousin Ja. eats more food than I do. Seriously.
Same hair, different cousin.
Getting to know Cousin Bry.
Cousin L. smiles every time she sees my camera.
Cousin Bri. & my favorite pic of the day.
Cousin Je.
I'm basically her favorite uncle.
She's not laughing...she's stuffing rice crispies into her mouth...
...and trying to keep them there.
Out on the deck.

Nate

On The Beach!

The smoke from the nearby forest fire finally dissipated enough to allow Tricia and I to go out to the beach (which is like a mile from my parents' house) for a few minutes a few evenings ago...



Meka loves the beach almost as much as we do...she enjoys eating sand more than we do...


Hopefully Gwyneth can come with us next time!

Nate

Saturday, June 21, 2008

Better Late Than Never!

This might be the cutest thing ever...we don't know these kids, but I hear they're faithful blog readers!



Thanks, Bogart Family!

Nate

The White Rose Guitar

Doyle Dykes is one of the most respected fingerstyle guitarists in the world. My dad and I got to hear him play a few years back in Southern CA before either of us knew who he was. Simply amazing.

Taylor Guitars partnered with Doyle several years ago to create a personalized guitar for Doyle based on his own specifications...the Taylor Doyle Dykes Signature Model Guitar. They began producing Doyle's guitar in "black" and "natural" (colors) for the public shortly after.

Beyond his specific musical, electronic and stylistic requests, the most identifiable feature of Doyle's guitar is the white rose of mother of pearl inlaid in the guitar head. Everywhere Doyle travels, he always plays a song he wrote for his daughter called "White Rose for Heidi". Before playing the song, he tells the following story...

When my oldest daughter, Heidi, was four years old, I asked if she wanted anything special from God. We were saying our bedtime prayers. She replied, "Yes Daddy, there is one thing I've been thinking about." "What is that?" I asked. "A rose," she said. "I'd like God to bring me a rose."

The next day, I'd forgotten about it. That night at prayer time, she again asked, "Daddy, how come God didn't bring my rose today?" I felt bad, as well as bewildered. I was really at a loss for words. Suddenly, I said, "Well, maybe you need to tell Him what color rose you want." She said, "Oh, well I've been thinking about a white one." We then asked God to deliver a white rose for Heidi.

The next night, after a concert a few hours away, a little lady, who apparently was "special," walked up to me after everyone had left. She asked, "Are you Doyle Dykes?" "Yes," I replied. "God told me to bring you something from my garden today." She handed me what I thought to be carrots or some other vegetable from her garden that was wrapped in aluminum foil. "Thank you, I'll enjoy eating this," I said. She giggled like a child and said, "Uh...You'd better open it."

I peeled back the aluminum foil to find a beautiful, solitary "White rose for Heidi
."

A little over a year ago, on the second Sunday of June, my church presented me with a gift of money that they had collected, telling me to buy a new guitar. I've had the same guitar that my parent's bought for me as a Christmas gift about 15 years ago. It's been a solid, wonderful guitar for many years, but has never been something that was well suited for use on stage, especially in our church building playing with our band...in fact, I've been using a borrowed guitar on Sunday mornings for the past year (thanks, Rich!).

My dream has always been to own a Taylor guitar, and the church's gift not only allowed me to buy a Taylor, but to buy one that I would never need or want to replace.

However, partly because I'm lazy, but partly because I knew owning a new Taylor would be as much a curse as a blessing while we lived in Durham (because I would not have been able to play it very much), I put off making the purchase.

All this past year, Tricia has been bugging me about buying the guitar, but I've just been reluctant to do so until we were home again. I shopped quite a bit, looking for exactly what I wanted to buy...I just never bit the bullet. A few months back, after Gwyneth was born, I remembered Doyle and the story he told about his white rose guitar, and mentioned to Tricia how it would be cool to own one of those guitars. We even looked up a few on the internet.

About a month ago, she began telling me about how cool my Father's Day gift was going to be. I couldn't imagine anything better than her Christmas Gift and Birthday Gift for me this past year. But in the back of my mind I thought that maybe she was trying to get my guitar for me, which was a little scary because I knew the specifications I wanted, and I knew that Tricia didn't know much about guitars.

Despite my best efforts, including some intense questioning when she was coming out of sedation the other day (haha), she wouldn't tell me, even when father's day came and went last week. All she would say is that it was the best ever and that it was waiting for me when we got home.

Well, needless to say, Tricia is basically the best wife ever. She found a brand new, natural white rose guitar for an incredible price. She and my mom had it laying open in it's case for me when we got home yesterday, just in time for me to drool for a few minutes before packing it up and taking it to band practice. It is just about the most beautiful guitar in the world, it sounds incredible (especially compared to my old guitar), and it has some very rich and sentimental significance to me (hi, Gwyneth Rose!).

So, without further ado, here are a few pics of my new White Rose Guitar...




I've named her Emma Claire (or, E-Claire, for short).

I have a few more pics of the guitar posted on my Photo Blog. I'll let Tricia post, on her blog, the pics of me actually seeing it for the first time (I'll let you know when she does that).

A HUGE thank you to my Nags Head Church family...I pray that I can use your beautiful gift to continue worshipping God with you for many years to come!

And, here is a video of Doyle himself playing his beautiful song, "White Rose for Heidi".



Thanks!

Nate


Friday, June 20, 2008

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

Wednesday, June 18, 2008

(Bump) 65Roses4PattySue Alert

Tricia updated her blog today. Check It Out!

Nate

Wednesday Update

They've determined exactly what kind of PTLD Tricia has...I wasn't here this morning when they talked with her, so I don't know exactly what it is, yet.

She'll receive a few hours of intravenous chemo (Rituximab) this afternoon, and then be released. We've been told many people do not experience any side effects from the drug. She'll receive one treatment every week over the next four weeks. We'll return to Duke next week or the out-patient treatment, and then, hopefully, they'll allow us to finish up the last two treatments at a location closer to home.

They're also reducing her immunosuppressant drugs.

We'll travel home tomorrow.

I'll explain more about the cancer later.

Thanks.

Nate

Tube pulled

11:55am

If you read this in the next 20 minutes, pray for Tricia as she's about to have her chest tube pulled. Very painful.

Thanks.

Nate

Tuesday, June 17, 2008

(Bump) Tricia

(This was originally posted in mid January. I thought today would be a good day to bump it.)

My wife is the bravest, toughest woman I have ever know. There is no way that I could do what she is doing right now. Lots of pain, even more discomfort, little sleep, locked away in a small, ugly room, poked and prodded by the hour, no sense of privacy...I could go on. It's incredibly humbling that she chose me.

You are my hero, Tricia!

video
("Fix You" by Coldplay)

Nate

PS. These pics span the 7 years Tricia and I have been.

Monday, June 16, 2008

Negative

The results came back late this evening, and Tricia does have Post-Transplant Lymphoma. We'll be talking with the oncologists tomorrow to learn more and what the plan for treatment is.

Tricia has a few things going for her:

1) They've caught it early, which is always a good thing.

2) This is a very treatable/beatable form of cancer, perhaps even forgoing aggressive forms of chemo and other treatments.

3) There are still no signs of rejection, which makes treatment very optimistic (I'll explain more later).

4) When you've dealt with an incurable, life-shortening disease your whole life, as well as other things like diabetes and organ transplantation, cancer just doesn't seem like such a big deal as it might if Tricia were perfectly healthy otherwise. I don't say this to be flippant of cancer at all, as we know the possible severity of cancer and have friends and family who are dealing with cancer right now, a few who are dealing with serious lymphoma. But, neither Tricia or I are worried or scared about this. The doctors seem very optimistic, and, considering all Tricia has been through and still has to go through, this feels like something that God has prepared us for. We're just happy to know what it is so that we can get on with it.

Thank you for your continued prayers. To be honest, our biggest concern right now is getting Tricia out of the hospital and getting us all home ASAP. We're praying that the immediate plan does not involve more time in the hospital, especially considering that Tricia's entire family has a week of vacation planned next week on the OBX...something that Tricia has had her heart set on for nearly a year.

We'll let you know more when we can.

Thanks.

Nate

Sunday, June 15, 2008

Dads

I believe that, perhaps, the most influential factor of being a great dad is having a great dad. Fortunately, I have had 27 years of that kind of influence.


I'm pretty sure that Tricia has been just as fortunate.


Thanks to everyone who has/is wishing me a happy first father's day! I really appreciate it! Make sure you check out Tricia's Blog Post from early this morning.

Thanks!

Nate