Thursday, July 30, 2009

Baby Steps

We spoke to Dr. Albritton & Dr. Grier briefly this morning. Bottom line is that we are to discuss with Dr. Gouw (our Huntsman onc) exactly what radiation treatment the tumor board is recommending; ie. field of radiation, amount, timing, risks vs. benefits, etc. and hear what his opinion is about this option. Nick also needs to get a ct of his chest. I'm working on setting up these two appointments. He will be meeting with Dr. Mulvihill tomorrow at 12:30 and I'm glad because Nick hasn't eaten hardly at all since we've been home and his stomach hurts, feeling poorly overall (temp is normal, tho).

We will need to rebook our trip to Boston next week or the following week to meet with Dr. Grier and get a game plan set up. Although Dr. Grier is of a gregarious and boisterous nature, he would like Nick to decide how much he really wants to hear about his prognosis. Relapse has some hard numbers, saying some patients want to know exactly what they are up against, and some prefer not to know the details to keep their heads and spirits up. Once he meets us again personally, he will judge Nick's tone, expression and response to proceed accordingly. This is a lot for Nick to process; please pray for peace in his heart and clarity in his mind to chose the course best for him.

On a fun note, crazy Nurse Mary called and left me a message today. She saw a poster of Nick and the Relay for Life event. She is working graveyard tonight and will go home to sleep and then try to come walk around with us tomorrow! We are getting really excited about tomorrow night and hopefully Nick will feel up to going for a little bit

Also, on my MSN homepage, I came across this article - about Tyler - the extreme kayak adventurer whose picture we just posted. Check out this page on MSN:

Thanks again, everyone! With lots of love,


Wednesday, July 29, 2009

Call Postponed

After we got up at 6:00 a.m. and drove to the office so we could all be on the nice teleconference phone, I received a phone call at 7:10 (call was to be at 7:15) informing us that Dr. Albritton had a family emergency and we would have to reschedule the call until tomorrow at 8:00 a.m.

What do we do except be thankful we were weren't in Boston, which would've involved change of flights, hotel, etc., and prayerful for Dr. Albritton's family. It had to be important as this is her last week at Dana Farber and I know her schedule is packed.

Til tomorrow...

Monday, July 27, 2009


Nick is home from the hospital today. He still has a bit of a temp (99) and the docs would like to see his white cell count (now at 12) to still come down a bit but they sent him home with his super-human antibiotics.

Dr. Mulvihill checked in with Nick this morning and said the tumor board met and the majority of the docs would like Nick to receive radiation. We obviously have major concerns with this:
1. Nick's threshold to receive more radiation
2. There is no tumor to pinpoint treatment
3. Permanent damage to his colon, kidneys, etc.

Instead of meeting personally with Dr. Albritton & Dr. Grier, we will have a conference call instead on Wednesday morning. We will address this concern as well as the pathology results and chemotherapy options.

In the meantime, Nick is home and feeling pretty good. Thanks so much to all for your prayers and warm wishes. Although this battle rages on, so does the support, kindness, blessings and gratitude.

To wrap up, I'd like to share a prayer Fairy Godmother Jennie shared with us:

Prayer of Thy Healing Angels,
That is carried from God by Michael, Thy Archangel.
Pour out, Thy Healing Angels,
Thy Heavenly Host upon me,
And upon those that I love,
Let me feel the beam of Thy
Healing Angels upon me,
The light of Your Healing Hands.
I will let Thy Healing begin,
Whatever way God grants it.

Sunday, July 26, 2009

Stay the course

Yesterday continued to be interesting. Nick was on a couple of different antibiotics, but his temp jumped up to 104.2. Dr. Le personally checked in on Nick (obviously came in from home) - I'm really trying to like him. He, along with Dr. M decided to switch things up a bit with some different antibiotics and Nick's temp stayed at about 101 through the night. His pain has subsided and his white counts are hovering around 21, which is pretty high.

This morning, Dr. Le came in and when I asked questions about his current lab results (I had a copy in my hand), he asked me in an interesting tone, "Who gave you that?" I responded that I get a copy every morning. He said, "Every morning?" I said, "Yup". Idiot. But then he did take the time to discuss his counts, line by line, and I'm happy and it makes sense.

He came in again with Dr. M who has such a different, more personable demeanor. He really doesn't know what to do - they' can't figure out where Nick's infection is coming from. The cultures are still all negative and it's been over 48 hours. Only conclusion is that it is from his port but they want to wait a little longer for the antibiotics to work before pulling it.

We did, however, discuss more of Nick's pathology results. I rec'd an addendum to the original report stating that 1 out of the 8 lymph nodes retrieved is cancerous. Although not in either path report, Dr. M stated the tumor had permeated the pancreas near the tail and there is no way to get clean margins and we don't know if there are cancerous cells left internally. We're hoping the 1 lymph node is the one that was near the pancreas. Another disappointing note is that there was no necrosis found in the tumor meaning the tumor was alive and well. The reality of this is overwhelming, however, we remember that Nick has only had 4 rounds of chemo to attack this tumor, using the same chemo protocol as last time, and he may have built up a resistance. I know they plan on using a different concoction of chemos around the first of September and Nick should respond favorably. Dr. M will be sending Dr. Albritton an email today updating her. We will change our appointment to a conference call on Wednesday and get a plan established.

Nick just hurled and that may be enough info for the dr's to pull his port, although his temp dropped to 100. More later.


Saturday, July 25, 2009

Uh Oh...

Thursday night, Nick and his dad went to Salt Lake City to visit Brad Ludden, the founder of First Descents. Details and pictures below. He came home exhausted and felt he was running a fever. At about 9:00, it was only 100.5; by 11:00 it was up to 101.2, even with Nurse Carly putting an ice pack on the back of his neck. Time to call the on-call oncologist at Huntsman, who of course said to c'mon in. Problem is that 4th floor is full so we had to go to the U of U ER. We made it to ER about 12:30 a.m. At about 1:15, I called the 5th floor at Huntsman since this might be related to Nick's surgery and they had a bed ready for him. Unfortunately, ER wouldn't let us do that. Instead, they stuck us in a tiny room with an uncomfortable bed and chair (thankfully we had remembered to bring Nick's camo blanket and pillow from home).

They drew blood, lots of it; they took an xray; they monitored his vitals. At 4:30 a.m. they confirmed his white cell count to be at 20 so he has some infection going on, we just can't figure out where. Surgeon on call gave the ok to have Nick transferred over to Huntsman. At one point there were 3 stabbings in the trauma unit - there were more cops than doctors in the halls. Nick was sidelined. At 8:30 a.m., Dr. Le decided he wanted to see an abdomen ct scan to look for any pockets of infection. It took an additional 2 hours while Nick drank the white berry flavored chalk crap to give the ct scan contrast. Throw in a few more brain traumas by incoming emergencies, Nick was finally given the ct scan 20 minutes shy of being in the ER for 12 full hours. He had almost no sleep in in excruciating pain due to the CO bubble still pressing on his nerve affecting his shoulder. Nick's dad took over before the scan so I could go home to eat and get some sleep. Results of ct scan were just fine.

During those 12 hours, Dr. Le and his entourage of students stopped by to check on Nick. He mentioned to me that he had left a msg with pathology but didn't get a call back and reminded me it was the weekend, unfortunately. I mentioned to him that Nurse Katie was able to speak to pathology and that the lymph nodes were being tested before the weekend, fortunately. Idiot. I also asked him why the surgical report didn't include the lymph nodes; he said he personally dictated the report and there must be confusion on the report and the pathology request. Idiot. Dr. Mulvihill also stopped in and he discussed taking out Nick's drain tube and if they couldn't find the source of the infection, they would have to pull out Nick's port. Ew. I asked him about the pathology mess and he said he was personally going to be at the tumor board meeting and will be getting more information. I need to find a way to talk to Dr. M about Dr. Le; Dr. M is fantastic and I'm to the point I don't want Dr. Le even involved in Nick's care (Dr. Le is under Dr. M's supervision). To add insult to injury, Dr. Le pulled out Nick's drain tube, stating it should just hurt like a bee sting. Idiot. Nick said it hurt worse than the catheter.

Anyway, Lee, Kels and I went back to the hospital to visit Nick. His fever remained low-grade but he felt better having slept and getting something to eat. His shoulder and pancreas area are still hurting him. Todd spent the night with him and I was able to get a remarkable night's rest.

This morning some things have come to light: Dr. Le wanted to have Nick's port removed; Dr. M said no, put him on antibiotics. Whew. Nick's white cell count is up to 23 and his hemoglobin is low. Not good. His fever spiked up to 101 again, off and on through the night. Nick is still in a tremendous amount of pain in both his shoulder and pancreas, but he looks good and sounds good. We are not going to Boston right now. Hopefully, the antibiotics will get his fever and counts back to normal; he'll have to stay in hospital until he is fever-free for 24 hours.

Sheesh, what a crazy couple of days. Back to Brad Ludden; Nick also got to meet Tyler Bradt who holds the world record in going down the biggest waterfall in a kayak, 186'!!! He's a real dude! Here are the pictures (Nick & Brad followed by Nick & Tyler):

I've really spent some time venting and perhaps a bit unfairly due to worry and lack of sleep. I promise I'll find my spirit of gratitude soon. More later. Thanks to all!


Thursday, July 23, 2009

Results in with no information

The only thing the path report states is that they found sarcoma in the tumor. I think even Kelsey's puppy is aware of this. Nothing on the enlarged lymph nodes, including the one attached to the tumor – they weren’t even tested. Nothing to indicate status of cells in tumor, alive or dead. Unfortunately, Dr. Mulvihill has been in a 10-hour surgery today and tomorrow is a state holiday. Thankfully, however, my favorite nurse Katie listened to my concerns and jumped on the phone to speak to pathology and convinced them to run tests on at least the one lymph node (Dr. M indicated he removed several enlarged nodes when he spoke to us post surgery but Katie said the surgical report did not reflect this). If pathology really gets to it today, they’ll set the stain but won’t have results until next week.

Katie mentioned Dr. Gouw will be presenting to the tumor board on Monday and hopes to have a surgeon in attendance to review the path results (why, I don’t know – they don’t say anything). I did receive a phone call from Dr. M’s surgical partner, Dr. Le; he was going to have to research why nodes weren’t tested and if there were any live cancerous cells in tumor.

I am very disappointed in the results and hope to have more clarification by the time we meet With Dr. Albritton & Dr. Grier next Wednesday. Katie also said if Dr. M has a chance to look at this mess, he has enough power to make things happen at the hospital for resolution. I’m sure part of my frustration is that we were told we would have results by Tuesday, and when we finally get them on Thursday, it is apparently worthless. Bottom line is there isn't a damn thing we can do except wait AGAIN for results next week. I am very thankful for Katie working with me to at least get the lymph node testing started today before the long weekend. Nick's drain tube has to stay in until the 31st, again because of the state holiday. If this weren't a PG rated blogsite....

On a lighter side, Nick and I had lunch yesterday with Laurie Roach and Matt from First Descents. They are here for the Outdoor Trade Show in Salt Lake. Very nice people and so glad to have had the chance to get to know them better. Today, Nick came with me to watch Carly play in a World Series softball game. Her team lost but Nick enjoyed the sunshine and fresh air in the beautiful Park City area. We moved our outbound flight to Boston from Saturday to Sunday to give Nick one more day to recoup; we have some amazing friends working on getting our family tickets to go see the Red Sox!

Nick is still feeling pretty crappy but has bouts of energy. I want to personally thank Kelli, Kailey & Makelle for bringing Nick a little of your sunshine every day. You girls really, truly make a difference. Thanks to all the readers of this blog, to our family, to our friends, those that don't know us very well, those that do... Thank you for prayers, warm wishes, cards, food, humor, listening skills and the love.

With gratitude,


Wednesday, July 22, 2009

No news yet...

Still nothing from surgical pathology yet. I am definately the squeaky wheel, but there is one more stain they are waiting for and since they didn't call this afternoon, hopefully we'll hear tomorrow morning.

Monday, July 20, 2009


Turned out Nick's blood count and fever stabilized - no need for a blood transfusion. The surgeons thought perhaps Nick's pancreas was leaking but that test came back negative, too. I think his drain tube was clogged for the first couple of days, resulting in low output, making the docs consider taking the tube out. However, a clever aide noticed the clog, made an adjustment and the drain tube really started to work. I'm guessing the fluid in his abdomen was backing up and caused his blood counts to go a bit crazy. So...

I got to bring him home this morning! We're both going to take a nap. More later,


Sunday, July 19, 2009

Can we go home yet?

Yes. No. Maybe.

Thursday was rough. A lot of pain. Zero sleep. Morphine doesn't work for Nick to reduce pain, just makes him sleepy and breathe very shallow, which sets off the alarm. Issues with the dreaded catheter; all I will say is that I saw Nick up all night Thursday night doing everything humanly possible to avoid it on Friday. He avoided it :)

Friday was better but we are encountering various opinions, depending upon which doctor or nurse you talk to. Morning doctors said, "You can have something to drink this afternoon." Yay! Afternoon nurses said, "No way, nothing to drink for another 2-3 days." Crap. Those little green sponges on a stick aren't cutting it for Nick. He also ran a fever in the evening from 101.5 to 98, up and down. Crap.

Saturday morning doctors said, "Walk a bit, get your colon and kidneys moving a bit and you are outta here this afternoon. We'll even take out your drain tube, too." Yay! I actually said, "Hallelujah!" to that statement as we weren't looking forward to dealing with the drain tube at home; quite certain I'd faint and Nick would be stuck trying to figure it out on his own. Afternoon nurses said, "No way. You need to be eating more, walking more and off the pain pump." Crap. Again, he ran a fever from 8:00 to midnight. However, he was diligent walking the hospital floors, off the pain pump, ate breakfast, lunch and dinner and sleeping better.

This morning, we didn't believe the doctors and just waited for the nurses. Docs finally got wise and took a blood sample. Results showed Nick's hemoglobin and hematocrit levels are critically low and his white cell counts are high. He may have an infection, he may not. He may have internal bleeding, but he isn't showing any other symptoms (light headed when walking, pain or distention when pressing his belly). Nurses say he'll have a blood transfusion with at least 2 pints of blood; docs say they'll wait until this afternoon when they retest his blood. You know who we believe. He's all set up and ready for the blood. We're obviously not going home today. Sorry, Kelli, Kailey and McKell - he won't be able to see your welcome home sign yet, but we did email him a picture.

I've spent every night here with Nick, along with my favorite pillow and blanket. I'm sure Nick is wondering how old he has to be before I'm not so maternal, but it sure isn't age 20! Todd may take tonight so I can check in with the rest of my family. We really have a fantastic support system and I'm so very, very grateful. Please keep the prayers coming, he isn't over the hump yet!

I have our trip to Boston all booked for next Saturday to meet with Dr. Albritton and Dr. Grier. May have to postpone. One of our obvious frustrations is who is the lead doctor monitoring Nick? You can bet I'll be on the phone tomorrow morning asking questions.

Positive note: one of Nick's favorite nurses, Jay, was on the floor last night and came in to say hello. He's a great guy and it was nice to see him; made both Nick and I smile.

With love,

Thursday, July 16, 2009

Surgery Update

Nick and I were up early and checked in the hospital by 6:00 a.m. Fairy Godmother, Jennie, actually beat us there and sat with us until they wheeled him off at 7:15. Nick's dad and I sent him away with kisses and love. We received two phone calls over the next few hours from the operating room until finally Dr. Mulvihill arrived to give us the update at 12:30.

The surgery took well over four hours. He successfully removed about half of his pancreas intact, with the tumor appearing to be mostly comprised of scar tissue. This means Nick responded extremely well to the chemo. The spleen was a little more difficult to remove because of all the blood vessels attached to it. He also had to remove a portion of the lining of Nick's colon (upper intestines). He was able to obtain an inch of clean margins around the tumor, which is also great news. He is concerned with several enlarged lymph nodes surrounding the tumor (which were also removed). May be cancerous, but also may be due to the activity in the pancreas. We should have the pathology report back on Tuesday. Once Jennie knew Nick's surgery was successful, she had to leave while the other Fairy Godmother, Denise, stayed for the rest of the afternoon, along with Lee, Carly & Kelsey.

Nick is now on the 5th floor and will probably be here for two nights. They wheeled him in to his new room (#5509) and he was obviously in pain. As I watched the nurses unplug and plug in several lines and tubes, I couldn't hold back the tears any longer. Thankfully, Carly joined me and then Nick was emotional as well. I stood by his side, holding his arm. As the nurse checked out his incisions, I began to sweat. The nurse asked Nick if he felt nauseous and I said "yes". Many of you may not know this about me, but if I see anyone in pain or if I see blood or a wound, I faint. I know. Ridiculous. Lee could see that my knees were buckling as I leaned heavily on the bed rail. He stood beside me and gently suggested I sit for a bit. I did and I felt much better - what a wuss. Meanwhile, Nick's pain is still a 5 out of 10; Carly is by his side practicing her nursing skills handing Nick little sponges on a stick dipped in ice water. He can't drink anything for two days!

On a humorous note, Carly wanted to see Nick's incision (I stepped into the hallway). His dad, Lee, Kelsey & Denise all stood around the bed to see, too. His dad folded his hospital gown down, but got a little too close for Nick's comfort, as his eyes flew open wide and he said, "Hey, easy, easy, easy!" They almost got to know Nick in a very uncomfortable anatomical way.

That's it for now. Thanks for all the prayers!


Wednesday, July 15, 2009


Nick will undergo laproscropic surgery tomorrow morning at 7:30 a.m. (we have to check in at 6:00 a.m. - mercy!) to remove half of his pancreas and his spleen. We anticipate the surgery to last three to four hours. Amazingly, Dr. Mulvihill predicts Nick will only spend one night in the hospital, maybe two. Within two weeks, he will be able to do anything he wants. Dr. M makes it sound so simple...

We finally received confirmation from Boston to take the lead as Nick's oncologist. Dr. Albritton's last day at Dana Farber is July 29th, so we will try to meet with her and Dr. Grier on the 27th or 28th, depending upon Nick's healing progress. Dr. Grier will oversee Nick's treatment from that point forward in conjunction with Dr. Gouw at Huntsman. Yay!

We will keep everyone updated tomorrow. Thank you all in advance for your prayers, positive thoughts and energy for Nick's benefit. We are all feeling very optimistic right now!

With enormous gratitude,


Friday, July 10, 2009


I know it has been a long time since I have written on my blog, but at least my Mom is awesome enough to keep it updated. Too make up for my lack of writing I will try and explain my awesome experience yet again at First Descents!!
So first off.... my flight to Kallispel was very different. For one, I was the only passenger on the small jet that could hold up to 50. Second, the flight attendant made it more awkward with her "unique" personality. Ha good thing its was only like a hour and half flight.
I was then picked up at the airport by Whitney and driven an hour away to the camp which was located inside Glacier National Park which was a different location than last years camp. I was the first camper to arrive but I did not mind because I was too busy catching up with some of the counselors that I knew from the year before. I also met a lot of new counselors who were all such nice people. I must say that kayaking is a cool thing to get into because all the people who kayak are very down to earth loving people. Seriously, all of them are super cool!!! Later that day the rest of the campers arrived. Only one other camper was a second year like me, the rest being first years. So nicknames were being discussed and given that night at the campfire. Some of my favorites were: Dude (Have to meet the guy to understand), Captain Obvious (Pro kayaker who let everyone know it was raining when it was definitely raining. Ha). My nickname which I got last year is.... Nickname. Ha its hard to explain to everyone at first but everyon seems to like it. Including me.
The days to follow were the same as last year. Lots of kayaking on the Flathead River where everyone got to know each other pretty well. However, what was different than last year was that this year I felt more like an example than I did last year. Campers were always asking what to expect every day on the river and stuff like that. Also, because I had to leave camp early and because I was doing so well on the river (nothing was over a class 2 rapid) the counselors felt I could have my graduation day on wednesday. Wednesday was alternative watercraft day which meant campers would be going down the river in Topo Duos (two person kayak) and Duckies (iflatable kayaks). So camper would either ride with a counselor in a Topo or ride with another camper in a duckie. But not me, I was given the opportunity to go down in my kayak for graduation. This time we would be four sections of class 3 rapids which I have never done. I was super excited but a little nervous, especially about the section called JAWS. Ha. In the end I did great down the river. Never swam and only flipped in the first rapid, where I waited upside down for a T rescue from Bad Santa. Ha. Best day of camp for sure!!!
There were also a couple shocking and unexpected parts at camp. One was two freshman college girls showing up that I have never met claiming they were there to see me. One of the girls ended up being the daughter of a lady my dad works with and she was working the summer in the same area. She and her friend had brought me taffy and wanted a picture. Ha definitely unexpected but cool. So if she or her mom reads this... THANKS!!!! Also, Kelsey and Brooks (she is on Team Beyond Cancer with me, and he is a pro kayaker who made TBC's youtube video) showed up and kayaked a day with me. They also set me up with an awesome kayak helmet to take home which can also be used as a ski helmet. Also looks like they are going to set me up with a kayak and paddle here soon so I am really excited to get into the sport. THANKS GUYS!!!
K so I know I have a novel here.... so much to tell ya know. So to wrap it up, FD was another awesome experience I wont forget and it is just what I needed before surgery and chemo to come. Its crazy how much the river can teach you about life. There are tough rapid sections as well as relaxing enjoyable parts. I happen to be going through a big class 5 right now. Almost out of it though. Also, the lead counselor always gave advice on the river to "look where you are going and you will not tip". That can be used in many ways. So I like to think that in life I am looking where I am going and I am not going to tip.
Lastly, for those who have donated to my charities... You have done more than you know. You dont get to see the faces of the campers who experience this camp, but I do. And I am tellin you now that it completely changes their lives and outlook. Its truly amazing. I even talked to a first time camper today and asked her how it went when she left camp today. She said she cried on the flight back home the entire way. She didnt want to go back home!!! Ha.
So thanks everyone and thanks FD!!!!



Wednesday, July 8, 2009

First Descents Update

I just got an email from Nick and he asked me to update his blog to let everyone know he is having a blast. His only regret is that he has to come home early. This is exactly where he needs to be right now and re-energize his spirit and body in preparing for next week's surgery and the upcoming months in battling cancer. We are very, very grateful for First Descents and the opportunity of healing they offer the young adults attending their camps. I'm proud of Nick in his efforts to give back to this foundation so that others may benefit, too.

With lots of love,

Sunday, July 5, 2009

Scan Results, Kinda

Because we are out of town and the holiday, I wasn't able to get my hands on the actual report. However, Nick's nurse, Katie, took the time from her day off to look up the results online from her home and called me late Friday night (incredibly kind of her to do that...) Good news is that the tumor has continued to shrink and the suspicious nodules in his lungs have disappeared. Confusing news is that the doctor reading the PET indicated "post surgical findings"; interesting as he hasn't had surgery yet. Regardless, nothing new to worry about so we will meet with the surgeon on Friday to discuss further.

In the meantime, Nick left early this morning to Kalispell, Montana to attend First Descents. He is so looking forward to this trip!

Bye for now! Thanks to you all for the prayers and well wishes - we are very grateful!