Rough day for the entire family...

Nick had his PET scan Wednesday afternoon and was thoroughly exhausted and in pain by the time we came home 5 hours later. We were able to get him a fentanyl patch and his pain seemed to ease by evening, though he slept little.

I was able to get a copy of the results faxed to me by noon yesterday. It was frightening, to say the least, but placed a call to Dr. Gouw before giving in to panic. Katie called later in the afternoon and confirmed the concern Dr. Gouw has after reading the scan results. It appears Nick has two new cancerous areas in his lungs, his entire abdomen is blanketed with a layer of cancer over an inch thick and a lone gland that has metabolic activity (still have to Google that one...). Dr. Gouw debated putting Nick back on chemo, but decided to go with the clinical trial, which starts on Monday. We all have a tremendous amount of hope riding on it now. At least we now know why Nick is in so much pain, and we are taking extra measures to keep it manageable.

Carly lost her job as a supervisor at a call center yesterday. Obviously not her dream job, but did have her summer plans and college based around this job. She drove home to be with us to help her sooth her wounded pride as we watched Kelsey play in her high school softball game. Another daughter, Natalie, is also facing a very difficult journey in her life starting today, with little for us to do but pray for her emotional strength and express our unconditional love. Fast forward to the junior varsity game - Kelsey was pitching and took a line drive to her right ankle, laying her out flat. School trainer told us to go get it xrayed. As I'm packing up my chair and Kelsey's ball bag, I'm thinking, "wow, we are really having a bad day..."

With all of that being said, Nick is going to be a groomsman for the bride - Makelle - in her wedding tomorrow. He will be looking mighty handsome in a tuxedo and will be able to hide his portable iv and drain tube. Carly brought up the first season of "Modern Family" so we can all get the laughter rolling. Kelsey's ankle is just badly bruised and it got her out of doing any more pitching. Lee is in town for awhile, increasing my strength tenfold while Todd, with all of us, stay close to Nick, Carly & Kelsey.

I will be posting more later about some amazing news with CureSeach, First Descents and all of our upcoming WACKY events. There doesn't seem to be anything better when facing fear than to be proactive in fighting this despicable disease.

Please pray for Nick's immediate and successful response to the clinical trial.

With love,

Lori

What a difference a doctor makes...

Boy, was I a crab yesterday! I think my whole family was (is?) afraid of me. But then...

Docs came in this morning (infectious disease doctor, interventional radiologist and floor oncologists) and gave Nick the go ahead to be released today. His drain will remain in for now (although Nick is certain it isn't working) and will have continuous iv antibiotic 24/7 through May 16th. Next came in Dr. Gouw (oh, thank goodness!), with Katie, Grace and Spencer, the clinical trial guy. Trial is ready to take Nick and he signed the consent forms. We are working on pre-testing schedule as I type and Nick will begin treatment next week! I also asked Dr. Gouw what he thought "scalloping of the liver" meant. He smiled and said, "I don't know, I was going to call the radiologist to see what was really on the ct scan. I'll go call right now." He came back 5 minutes later explaining that something is pushing on Nick's liver, making a dent and causing pain, coincidentally where Nick is experiencing in his back right ribs. We all said a collective "ah....." since that appears to be the culprit behind his pain. This is cancer related, not infection related, so will keep a close eye on his pain level. Not sure what it is, but I understand Dr. Gouw so much better; maybe its because he really cares for Nick personally, as well as professionally.

So, I'm off to pack up Nick's room. We should be out of here shortly where Nick can finally be in his own comfy bed. I'll be trying to think of what nice to make for dinner as I try to make amends with my family and genuinely thank them for all their help through this week.

A special thank you to all of those offering prayers and support for Nick's well-being, including the particularly heart-felt prayer for Nick to have beautiful nurses while in the hospital (and he did, as a matter of fact).

With love,
Lori

Still here...

The ct scan was done without incident and the floor oncologist finally came 5 hours later (after our nurse paged him) and informed us the new temporary drain didn't appear to be working (we know) and the tumor and acsites were noted. WHAT???? He read the look on our faces, scratched his head and said, "Do you have any questions?" Yes, you idiot, what tumor? After some clarification on my part, he acknowledged there isn't an actual tumor, per se, but the abdomen and liver appear to have active cancer throughout. He scratched his head again, smiled meekly and left.

This morning, one of the doctors on rounds came in to check up on Nick. I told him about the scan results that sent us reeling but didn't have any explanation. He walked towards me and kindly explained that the doc wasn't familiar with Nick's history and probably felt uncomfortable in discussing this case. Then sweet as pie, asked "So, do you have any questions?" Idiot #2. We want Dr Gouw, wah! We patiently waited for the doctors on rounds, #2 idiot in tow. They are stumped about the drain; since it isn't working, they want to take it out tomorrow (no going home this Easter). Conversation went something like this: Dr: There isn't much fluid in his abdomen so we will take out the drain. Me: If there isn't much fluid, why is his tummy distended? Dr: Because he has fluid in his abdomen, although in pockets too small to drain from. We know that! Also, the tissue that makes up the pockets are permanent. So how do we get the fluid out? They don't know - Nick will just have to keep having the paracentisis procedure weekly for now. Me: What does it mean when the ct report says, "scalloping on the liver capsule? The doctor replied by giving me a 5 minute explanation of how the abdomen wall, liver and other internal organs are protected, blah, blah, blah. Me: What I'm asking is if there is cancer in his liver. Dr: No. But the small cells are everywhere in his abdomen. We know that! I'm getting ticked off. No indication if this is bad, good or indifferent, although we all knew it wasn't unexpected, especially being off chemo for a month.

Lee took Carly & Kelsey to church this morning, while his dad, Leigh, Jennie and I kept Nick company. After the doctors left, I went off home to gather up a picnic and Easter basket for Nick and we all came back and had a very nice lunch together. Carly made Easter sugar cookies, Kelsey decorated eggs and we all pitched in to bring the true spirit of Easter back in to room 4506. His room looks quite nice today with balloons, daffodils, cards and an awesome stuffed Buzz Lightyear.

New plan is they are changing antibiotic again and if he remain stable (fever free, etc) he can go home tomorrow. His white cells jumped back up to 25, but they are pretty sure it is because of the prednisone he had yesterday for his scans. Nick is still liking Ambien and is getting his sleep. Other than the stinking cancer attacking, Nick is doing great.

Hopefully, Nick remains stable, drain tube removed (again!) and we go home. He will be on iv antibiotics for 4 weeks. We still plan on meeting with Dr. Gouw tomorrow at 10 to sign consent forms and we can get moving on this clinical trial.


Nick & Elliott

Happy Easter to everyone!

With love,
Lori

Well, not so fast...

Minutes after I posted yesterday, things changed. First, switched back to original antibiotic, Vancomycin. Next, after waiting for four hours, radiology tried to drain Nick's tummy, but his abdomen was filled with tiny pockets of fluid, rather than one large pocket so they couldn't drain anything - sort of like honeycomb. Then by later in afternoon, he got a slight fever. His potassium levels were low so he got an extra iv to replenish it. He was tired and uncomfortable. They suggested he take an Ambien for bedtime; combine that with pain meds and he finally slept like a baby.

Next morning, we got a visit from the infectious disease doctor. Nick has MSSA, which is better than MRSA, and is very responsive to Vancomycin. Because he had a fever yesterday, they are suspicious the pockets of fluid are protected and not being affected by the antibiotics so they did a procedure on him this afternoon (another four hour wait, which meant no food or drink after midnight last night because of sedation). They place a needle/tube into his abdomen and try to break up the little pockets, mix it up a little, and hopefully get more fluid to drain and allow the antibiotics to work. Turns out the procedure didn't drain much of anything, so he has a temporary drain and bag in for now. As Nick said, he looks like a little "chub chub." Then came in entourage of floor oncs and announced Nick will now get a ct scan done as they are concerned with the pain still in his lungs and a possible abscess. Hey, didn't we just talk about this on Wednesday, which was scheduled and then cancelled?

CT scan scheduled for tomorrow at noon. Not sure if he will be released or not... The Easter Bunny may be hopping on over to Huntsman. Nick has been walking and riding the exercise bike, getting lots of visitors and taking lots of naps. His blood counts continue to improve, he is off oxygen for longer periods of time, but his pulse is still around 120. Looks like this is going to be a slow recovery. Good news is that this isn't interfering with the clinical trial and will sign consent forms on Monday.

One funny story before closing: Lee and I went to see him tonight around 7:00 p.m. along with his friend, Kailey. He had just been given a dose of Dilaudin (sp?) and he was very, very sleepy, but was trying to finish reading a text on his phone. We were talking to him, but as hard as he tried, he could only raise his eyebrows, not his eyelids. We all bust up giggling, but he kept on trying, finally using his fingers to literally pry open his eyes. It was one of the funniest things I had seen in a long time.

Good night, all.
Love,
Lori

It's Staph!

Things change hourly around here, but bottom line is that the bacteria culture finally grew results that confirmed staph. They will be putting him on a more appropriate antibiotic today. If he remains fever-free with stable blood counts for the next 24 hours, he can come home tomorrow. He still runs a teeny temp of 99, his oxygen levels are still low and his pulse around 112-117. They think his oxyg levels are low because of the pain in his lung and not being able to take a deep breath, due to probable blood clot. They will be draining his tummy later today (he is looking pregnant again), so they have to hold off on his blood thinning shots. To help with all of this, Nick is on a stationery bike for 30 minutes a day and taking walks in the hospital. They also think his pulse will begin to drop as the infection subsides and the body isn't working so hard to fight it.

He still isn't sleeping well and is so tired. It will be good to get him in his own comfy bed. For the first time ever, no one spent the night with him (Lee and Todd still both out of town) and I needed to be home for Kelsey and the dogs (Kelsey hit a stand up double with an RBI last night, FYI...) It was very traumatic for me though Nick was probably pleased. He refused to let me write my name and phone number on the whiteboard in his room, in case of an emergency. Fine. I'll just give it to each nurse, aide, receptionist, scheduler, technician and housekeeper I see on my way out.

More later, thanks all!
Love, Lori

Heart of a lion, beating like a hummingbird

Interesting day... We both slept better and by noon, his temp was down, pulse down (well, to 109), and pain subsiding. Docs on rounds said bacteria not as bad as they thought and since he is responding well, they'll stay the course. White cell count up again to 25, but they said that is normal, should start to see a decline in a day or two. So off to home I go for a nap then to Kelsey's softball game - we actually had sunshine today.

I'm barely home when I get a text from Nick saying the pain in his lung is getting intense and went to get an X-ray, which didn't find anything. Also, his red cell count still low so they gave him a blood transfusion. Then, his oxygen level kept dropping off and on, as low as 79, so he is now on oxygen; his pulse jumped up to 130 a few times, hovering now around 120; and to top it off, his fever is back, although not too high.

Fairy godmothers came through today - Jennie bringing him his favorite egg mcmuffin this morning and Denise bringing his favorite clam chowder from Market Street. I made arrangements for Kelsey to stay at a friends house and I'm back up here with Nick tonight.

The good news is that his tummy doesn't hurt too much and he showered. Also, my other good news is that Kelsey had an RBI, got on base 3 times and was a brick wall as catcher. Gotta take it when you find it!

Nick is a very kind patient: he always says thank you to the nurses, aids and doctors, smiles when they come in or out, never appears to get irritated when being woken for yet another set of vitals, iv bag or shot and often inquires about their personal life. He's a terrific young man.

On that note, I'm off to say a prayer for a peaceful and healing night.
With love,
Lori

Drains, Bacteria & Clinical Trials

Let's start with the drain... Nick went down to radiology so they could see what that rascal drain was up to. Turned out it was clogged near the cap so they just snipped it off and added a new cap. Tah dah! Two liters were promptly drained and a portion sent off to see if it had bacteria in it. Regardless of where the infection started, they will pull the drain from his stomach if the fluid has bacteria. Nick's body is already flippin out trying to kill the whopper infection he has going on and the big, long, plastic foreign object is upsetting to his body and the bacteria thinks it is a great place to lodge on to, so out it goes. Yes, turns out it had bacteria in it so Nick is getting it removed as I type, properly medicated, of course! Actually, testing positive to bacteria means that it is an infection, not tumor growth, so it's a good thing!

Nick's pain is still intense and they have agreed to up his pain medication. They are pretty sure the pain is due to the bacterial infection. They are giving him whopper antibiotics to help tackle it (white blood cell count now up to 23). He still has a fever hovering around 101 and his pulse remains at 120. He hasn't been able to sleep more than a few minutes at a time and he is exhausted.

Dr. Gouw, Katie & Grace came to check on Nick and to discuss the clinical trial. The trial has two parts; the first one starts by giving the patient three increased doses of the drug while monitoring the effect. The second part starts where the first one ended, giving only the highest dosage deemed safe by the prior test. Dr. Gouw said Nick's tumor sample not only tested positive to the test drug, but SCREAMED positive. This is really encouraging to Dr. Gouw. That being said, he wants to hold off on starting Nick on the trial for a couple of weeks and since his scans and blood counts indicate infection vs. tumor growth, he thinks it will be ok. We still have the NY study and possibly chemo for alternative options.

So right now, we are focusing on Nick's battle against this raging infection. I'm home now to shower (the hospital staff will thank me), have dinner with Lee & Kelsey then back to spend the night with Nick. Carly drove up from Provo to go visit him tonight. He isn't quite up to visitors yet, but will feel better when his fever breaks.

Thank you so much that have already reached out to Nick (both spoken and unspoken) and offered up your prayers and support. Today turned out to be a good day.

With love, Lori

Concerning Issues

Nick called Thurs afternoon to let us know he was on way home saying he was tired. I was attending our CureSearch kickoff party but more than anxious to get home to see him. He said he drained a liter and it was full of tissue. Eeeeew. He had terrible abdominal pain, not cramps, but like doing 500 crunches (well, like 5 for me). Two oxycodone later, he slept through the night. He felt better Friday, moving from bed to couch, thirsty and drinking a lot, but little food. Saturday was the same, hockey playoffs keeping him occupied. I served him dinner in bed, which he couldn't keep down. Eeeeew. A boatload of buddies came by and really lifted his spirits.

By Sunday, his pain began increasing again. He tried to drain his tummy, but it seemed to be completely clogged. By Sunday night, he said, "let's go". I called the oncologist on-call, who recommended going to ER - our favorite! Nick was in a lot of pain and feeling nauseous. I packed our usual bags, blankets and pillows and we piled in the car with Nick holding a plastic bag, just in case. He had "the look" and I asked him if he was going to get sick and he nodded. I yelled, "then get out!!". We were still in our garage, I was hoping he could make a run for it. Nope. Eeeeew.

The ER nurse asked him what his symptoms were: fever of 101.5, vomiting, severe abdominal pain, distended tummy, high pulse rate and the new one where he had pain in his right shoulder, similar to when he had a blood clot. They drew a ton of blood, X-ray and CT scan - results came back stable and we were sent to Huntsman, 4th floor at 4:00 a.m., loaded with fluids, antibiotics and pain meds. Nick's room number is 4506 and his direct phone number is 801-587-4506 (his cell doesnt work well here.)

So now we are waiting to see how they are going to fix his drain, ought to be interesting. We were supposed to meet with Dr Gouw at 10:30 but not sure how this will affect the clinical trial. He still has a fever with what is probably a bacterial infection in his abdomen (white blood cell count at 17). It is common with acites and fairly easy to treat, but will need a fluid sample to confirm. He doesn't have a large enough pocket of fluid built up yet (so why is his tummy distended?) so not sure what they are going to do yet.

What I do find amazing is that Nick made it home just in time, after enjoying every last second with First Descents group in Moab. As soon as the last of the campers headed home, his body told him it needed some rest. And he listened.

More later,
With love,
Lori

Of Mice and Men

I have spoken to Nick a few times and he is having a great time in Moab with his rock climbing campers. I am excited to see the pictures and hear the stories!

Because he was neutropenic, he had to have labs done last Monday. His platelets were very low so he got to take a break in his blood thinning shots. Nothing like rock climbing when you have to be careful about bruising and not being able to have blood that clots and potentially face internal bleeding. Ok, that's a total "mom" comment. He had to have labs done again on Thursday (he was able to go to Moab Hospital and they faxed results to Huntsman). Platelets are back up a bit but confirmed his hemoglobin has been steadily dropping over the past couple of months. This is the part of the red blood cells that carry oxygen to the body from the lungs. He is very anemic, feeling pretty fatigued. He might get a blood transfusion next week when he goes in for his dr appointment next week just to give him a boost. This is also indicative that his bone marrow isn't bouncing back like it used to because of how long he has been on chemo. Frankly, we are all surprised he has been able to tolerate the chemo this long.

So, since NY still isn't ready to enroll patients for their clinical trial, Nick will enroll in the Salt Lake trial LDK378, developed by Novartis. It was designed for anaplastic lymphoma kinase (ALK) but doctors determined that the rhabdo cell has similar characteristics and have agreed to accept rhabdo patients, too. We will learn more on the 18th, but all I know so far is that it is an oral pill. Nick said he is only concerned about the side effects, but I need to remind him that is why it is a phase one trial - they are using HIM to find out what the side affects are! It has never been tested on humans before. The good news, in a weird and disturbing way, is that this new drug slows down cancer growth in mice. It's the dosage they have to fine tune. Nick is in for a barrage of tests: EKG, PET, CT, MRI, labs, labs and more labs.

That's it for now, we will post more about camp and clinical trial details next week. Blessings to all!

Lori

First Descents Ball

Friday morning began with the usual news - Nick is neutropenic - his ANC count is .8 meaning any fever earns a trip to the hospital. Here's a great idea, let's take Nick to a fundraising ball in Vail, Colorado, so he can mingle with about 500 people tomorrow night! He started on antibiotics to at least ward off a germ or two.

Friday afternoon included a camera crew from "Turning Point" in our home. Turning Point is a PBS documentary series aimed to motivate and inspire ordinary people to re-evaluate their own contribution by sharing moving stories of other "ordinary people" who have truly made a difference. Turning Point is doing a story on Brad Ludden, founder of First Descents, and asked to follow a camper around allowing him to share his story of why First Descents has made an impact on his life. FD chose Nick and next thing you know, we have a camera crew - complete with an audio boom, interviewing Nick. I arrived home 30 minutes late to pick up Nick, specifically avoiding the crew. I was wrong in my timing as I was quickly seated in a chair to answer questions about Nick and First Descents. No time to check the mirror or my nerves. I did good, though, and didn't cry once! Thankfully, Nick did a superb job and the crew will meet him at camp next Monday to tag along with him there.

Lee, Nick and I finally hit the road towards Moab. We arrived around 10:30 p.m. so just had time to say hi and good night to our friends. The next morning was absolutely beautiful in Moab. We enjoyed a delightful breakfast on the patio with Colin & Monica, overlooking the Colorado River. We made it to Vail around 3:00 p.m. in time to get dressed and arrive at the silent auction by 5:00. Nick looked particularly handsome, with the help of his new mustache. Many people asked Nick if it was real, but he explained if it was real, only the left side would have grown in. The first people to greet us was Brad Ludden, Corey & Lisa Nielsen. The FD Ball was first class. We were able to bring home a few items that we "won" in the silent auction. Dinner was delicious! There were a few guest speakers: April (aka Lemon Drop) - a breast cancer survivor and FD camper; Ryan Sutter (aka G-String; aka Ryan & Trista from the Bachelorette) - raised over $100,000 by competing in 10 major endurance events in 2010; and my favorite, Tailz (can't remember what his real name is) - he was the first blind camper to make it down the river in a kayak, assisted by Brad who was in a kayak ahead of him, paddling backwards, calling out instructions. His story and short video were amazing and solidified why we love FD so much. Nick was surrounded by his FD friends and he had a blast; what a perfect environment for him! We have some footage of him dancing but we promised we wouldn't post it. Matt (aka Mateo), Kelsey (aka Buttons) & Nick (aka Nickname)

Corey (aka Darryl from Darryl & Darryl - Brad is the other Darryl), Lisa (aka Googleybear) & Nick (aka Nickname) Amy & Matt (aka Southpaw) Meiners & Nick (Matt is a fellow rhabdo warrior and we have followed his journey through his blog; it was fantastic to finally meet them both!)

We made it back to Moab Sunday morning for Nick to attend the next two rock mountain climbing FD camps - a perfect venue for Nick's well-being. Nick had a hiccup in having some car troubles. After several phone calls, a tow truck and a borrowed vehicle (thank you, Colin), he is back with the pack. Wow, car troubles - what a normal experience for a 22 year old! It's going to be a great two weeks!

If you are curious about FD, here is a great article written for ESPN: http://sports.espn.go.com/espn/thelife/news/story?id=5543425

With love,

Lori