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

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 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

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

8:34pm Update

Tricia is out of surgery. Dr. Lin said that the surgery itself only took about 20 minutes. She was in the pre-op room for a long while, and then in the OR for a while as they examined the cells to make sure they were what they needed.

She is awake in the OR recovery room now and has already spoken with Dr. Lin. She will be brought back up to her room instead of going to the ICU (which, seriously, is the biggest praise ever). She has only one chest tube, which is also a good thing.

Dr. Lin said that the first examination of the cells shows that they are atypical, which probably means cancer. The full diagnosis won't be until Monday, but to be honest, now that we're past a successful biopsy, we're breathing much easier.

Thank you so much for all of your prayer and support these past few days. The next big thing for Tricia will be getting the chest tube removed, which is a quick, but very unpleasant procedure, and then hopefully learning the diagnosis and suggested treatment and getting out of the hospital.

Thanks!

Nate

(Bump) Haley Palmer

Haley passed away just a little while ago. Please, take the time to visit her site and leave an encouraging message for her family. CF is a horrible disease, but we can make a difference together.

I've been watching Haley Palmer's Story, and, though many of you are already aware of her, I thought I'd mention her for those who aren't.

Haley is 12, with CF and in desperate need of a transplant, but first, she is in critical condition because of other issues. Her family remains hopeful, praying for the same kind of miracle that Tricia and Gwyneth received.

A few of our family who have also been following Haley's blog have noted how much Haley reminds them of Tricia at that age, and I have to agree (from what I've been told of Tricia at that age).

I know that Haley's family would appreciate your thoughts and prayers right now.

Thanks!

Nate

Headed To The OR

The nurse just came in and said the OR just called. She's prepping Tricia now. I'll post again when Tricia is out. She'll go to the ICU for a few hours while she wakes up and they observe her, and then she'll be back in her room again.

Thanks for your prayers over the next few hours. Please, pray that they get the samples they need, that the recovery will be quick and easy over the next 48 hours (including the removal of the chest tubes), and that her stay in the ICU will be incredibly short this evening.

Thanks!

Nate

Update and Pics

Tricia's surgery has been bumped back a few hours, which means it's less likely to happen today. We're praying that it will happen.

Here are a few pics from the past several days...

Change, Feed and Burp Pit Stop on the Road...

Eskimo Kisses...

Loving on Mommy...

Nate

Correction

Got our communication crossed...I have to be at the hospital at 6:45am for a consult with the surgeon...surgery won't be until 2pm (if it doesn't get bumped).

Thanks!

Nate

Some Good News

Tricia's transplant surgeon stopped by tonight and is going to make room tomorrow morning at 6:45am to do the biopsy surgery. Thanks Dr. Shu Lin!!!

Tricia is very apprehensive, I think especially because of the chest tube, so please, pray that she will have peace tonight and lots of sleep.

I'll be at the hotel tonight to be with Gwyneth, and up early tomorrow to be with Tricia.

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

Out of the Bronch

Tricia is back in her room, waking up from the light sedation meds. We haven't talked with anyone yet, so we don't even know if they were able to get what they needed from the biopsy. We'll hopefully speak with somebody who knows soon, and I'll let you know.

Just to make sure, when medical tests results come back as "positive", that's usually not a good thing..."positive" means that they found what they thought they would find. A few people left comments and apparently thought that the positive result was good for Tricia. It's not. She has something, they're just not sure what, yet, but it probably is the cancer.

Thanks.

Nate

Positive

The PET Scan came back positive. This could mean that either she does have the PTLD or that she has a fungus that is causing inflamation.

She getting her bronch right now. Please, if you read this in the next several minutes, pray that the doctor is able to get a few good samples of her lungs from the areas showing the growths. If not, she'll need to be scheduled for a biopsy surgery, which will mean another trip to the OR, general anesthesia and a chest tube, all of which Tricia really wants to avoid.

I'll let you know more later.

Nate

Bronch Scheduled

2:30pm today. As far as we know, the biopsy will also take place then.

The transplant doctor just came in and hasn't heard back about the PET Scan yet.

Nate

Update (10:10pm, Wednesday)

First, thank you so much for your prayers and encouragement the past few days. To see well over 800 people leave a comment saying that they're thinking of us today is incredibly encouraging, and we deeply appreciate it (plus, that sets a new CFHusband record for number of comments under one post!)!

Gwyneth is doing well...up to 6lbs 3.5oz as of yesterday afternoon! Her O2 saturation and heart rate are good, but not great. Basically, her body is growing faster than her lungs, making them work a little too hard, as they are still underdeveloped. She is now on an incredibly small amount (so small, that I can't feel or hear it come out of the tank) of O2 (via a nasal cannula) for most of the day/night, just to give her lungs a little less to do on their own. She's also back on a med that she was taken off of a few weeks ago that should help as well. We've already noticed a visible difference since yesterday afternoon, which is good.

The docs say she looks great. It's important for her lungs to continue to develop, and for her to get this extra help from the O2 and meds because, if she's expending less energy breathing, she's using more energy eating and growing.

Tricia had her PET Scan this afternoon. Nothing too scary about it except for being told to clear your mind for a few hours while lying awake in a very small space... The results of the scan should show any tumors that might be forming in her body. I believe we'll hear about the results tomorrow.

She'll have a bronchoscopy and, hopefully, a successful biopsy of her lungs. If the biopsy is not successful, they will have to do a surgical biopsy, which means cutting her open, which she would is very apprehensive about (so, please, pray that the bronch biopsy is successful). I believe that we should have a fairly comprehensive diagnosis once the results of the scan, bronch and biopsy are all in, which may not be until Friday.

She was admitted early this evening, and is already sleeping in her hospital bed. She's bummed because she expected to be on her normal inpatient floor (which feels like home to us, and where they know her and her needs better), but there were no empty beds, so she's on am unfamiliar floor. I'm spending this first night with her, while Agnes (Tricia's mom) is with Gwyneth back at the hotel. You can pray that we all sleep well tonight and that Tricia will be moved to her favorite floor.

Tricia feels great, and, if the doctors weren't telling us that something was wrong, we would have no idea. Although she has EBV (mono), it's not the same as if you or I were to have what we know as mono. She has yet to be given an IV or anything else that she wouldn't have at home, and we haven't really been told what will happen over the next few days if she is diagnosed with something, which basically means that we're really not sure why Tricia isn't sleeping in her own bed tonight...at least, a little frustrating.

As I walked through the hospital lobby earlier this evening and entered the elevator, I thought to myself, for a brief second, that I should stop by the NICU on the way up to Tricia's room to see Gwyneth. Just a few minutes later, as I entered Tricia's room, I almost stopped myself because I didn't feel the gown on my back and gloves on my hands. And just now, as the nurse walked out of the room, I noticed how skinny Tricia's charts were (compared to the encyclopedia she ended up with by the end of her last stay). I can distinctly remember that last time I used the label "hospital" for one of my posts, thinking that it would be a long time before I added another post to that label... All that to say, it feels very strange being here now, especially considering how far Tricia and Gwyneth are removed, medically, from their last times as patients here.

We are praying with you that our stay will be short because the diagnosis will come back negative for anything major. We're also praying that God will show us why we are here this time...the last stay, while incredibly long and exhausting, still felt natural for us in a lot of ways. This visit simply does not.

In the meantime, we'll be patient and continue to know that we're exactly where God wants us, even if it makes no sense right now. Thanks again for your prayers, and thanks for your continued prayers over the next few days as we wait to hear the news.

Nate

If You Are Praying...and Update

So many are taking some time this morning to stop and pray for Tricia and Nathan as she undergoes tests today.

If you are and would like to post a comment of encouragement to them, here's the place to do it. You might include your location as well.

Thanks so much.

Rick Lawrenson

Tricia's PET scan was delayed until 2PM this afternoon, which will bump her biopsy until Thursday. She will still be admitted into the hospital today.

I also thought the "map" idea of where the prayers are originating was great. So I started it. But it's too huge a job! If anyone else has the time and wants to take a stab at it, please go for it. Here's a site that you could use: http://pininthemap.com/.

Join Us in Prayer Wednesday morning

I'm pirating Nathan's blog for a short request since his readership is way more than mine.

A great suggestion was made to his last post about dedicating the hours of 7-10AM EDST tomorrow, Wednesday, June 11 to pray specifically for Tricia's tests and her health. I've asked my church to join in and now am asking you to be a part of a huge breath of prayer ascending to the throne of God on her behalf.

If you can and will find a quiet time during those three hours, please do so. I'm seeing to it that our church will be open for those who want to come here and pray as well, although your location isn't important.

Thanks for all the support you have given thus far. Their journey isn't over and you're needed again.

Rick Lawrenson

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

The Next Big Thing

Now that we've got a good idea or when we'll be back home on the OBX, the next big thing for us is to find a house to buy. It's a buyers market on the OBX just like the rest of the country, but it's still incredibly difficult to find something that fits our needs in our price range. Renting is something that has worked well for us in the past, but for several reasons, we really need to go ahead and take the plunge.

We've been saving while looking off and on for nearly two years without much luck. The OBX is a resort community, with one of the highest priced housing markets in the country. Just for kicks, we looked at housing prices here in Durham, and we could easily purchase a brand new house twice as big for about 3/4 the cost as anything even remotely comparable back home.

Because of Tricia's health, as well as Gwyneth's current health, there are some pretty specific needs we have with housing...

> We need something newer that doesn't have the dust and mold, etc. that most older houses have. We wouldn't mind buying something older that needed some renovations, but anything you tear up has the potential of stirring up stuff that wouldn't be good for the girls to be breathing.
> We need something without carpet. Carpet tends to trap all that stuff I mentioned above.
> We'd prefer something that's not on stilts as Tricia will have difficulty walking up stairs when her health is not the best. If you know anything about the OBX, you know this alone will be difficult to find.

Along with the house, we'll also need to purchase some new furniture. Most of what we have (sofas, chairs, mattresses) is very old and used, and carries lots of that bad stuff I mentioned above.

All of the above are things that we've decided to make a priority in our lives. Many transplant patients choose to not take these same precautions, and it's no guarantee that these things will improve Tricia's quality and quantity of life, but it should help.

Anyway, we'd love to have your prayers with us about all of this. We know that God will provide, as He has not yet given us a single reason to doubt Him. We'd love to be in something by the end of the summer, and, in the meantime, we'll be living with my parents (who are excited to have us...but I'm sure would also like us to be out soon as they're trying to sell their house).

(And, because I know people will ask, no, we won't use Tricia's trust fund to help buy a house)

Thanks!

Nate