Sky Dive

I was scheduled to sky dive with a retired Navy SEAL Saturday (the 11th) but because of cloudy weather we were not able to do it. Fortunately Nix (the SEAL) was cool enough to try and do it Sunday morning which was Easter.
I woke up Sunday morning to blue skies and little wind. Perfect weather. So Lee and I ate breakfast, checked out of the hotel, and jumped into the rental car and headed to the jump zone.
The first thing I had to do once I got there was sign a bunch of papers saying I couldn't sue them if I died or whatever. Then, Nix gave me like a 5 minute pre-jump explanation of what I was going to do once we got in the air. He basically just said we are going to jump out of the plane.... Not a big deal. Ha. Then I got put in my jump suit and harness that attached me to the front of Nix when we jumped out of the airplane. After being geared up and waiting for the plane to arrive and pick us up, I asked Nix, "So can we do any flips?". Without hesitation he replied, "Do you want to do front flips or back flips?". Now realizing that I had choices I decided front flip was the way to go. So he told me a few minor adjustments to do to my jump procedure to allow us to do a front flip. I was super excited. Finally the plane landed and about 10 of us walked out to the plane and boarded. The pilot was a young kid in flip flops, and he began take-off as soon as the last person was in the plane. (Not even sitting or buckled in yet). As soon as the wheels of the plane left the ground I could see that Nix was smiling at me. I asked him why he was smiling, and he said to me, "You cant go back now!!". I thought to myself right then.... "Whats that supposed to mean". Finally we got to our destination of 13,000 ft where people began to jump out of the airplane. I wasn't nervous at all until we started walking to the open door. Then I thought of the words my grandpa said to me, "Your jumping out of a perfectly good airplane!". So I was squatting right in front of the open door with the camera guy looking at me hanging from the wing. Luckily Nix is not the kinda guy who would ask you if your ready. It was just 1. 2. 3. and now we are doing front flips at over 100 mph. I think we did like 2 front flips and then the rotation stopped. However, the rotation stopped as our backs were toward the ground and I was watching the plane get smaller and smaller. This was the only time in the jump that I thought... "Uh oh". But I just stayed tucked and a few seconds later we flipped back around and free fell for about 30-40 more seconds. Nix pulled the chute at 5,500 ft where I thought the complete rush of the jump was over. Little did I know that these parachutes are capable of doing hairpin turns that feel like your pulling 100 G's. I felt more out of control in the hairpin turns (where you and your chute are horizontal from each other) than I did in the free fall. But we had an awesome landing and it was the coolest thing ever. Definitely will be doing it again sometime. I highly recommend it to anyone who is seeking something totally different and extreme at the same time.
I will have video in a couple days of the free fall. But I will put some pics up of the pre-jump and post-jump pictures that Lee took.
I will post something soon since I go in for my port surgery tomorrow and I begin treatment on wednesday.
Later

Final Results

It's confirmed; it's rhabdo again.

We met with Dr. Chen this afternoon. She thinks the rhabdo has been there all along, sitting dormant until the pancreatitis flare up. Kinda like what came first, the chicken or the egg; not sure what prompted what. She doesn't think there are any other tumors nor any cancer in his bone marrow or lungs.

Because Nick responded so well to his last treatment, she'll put him on the same protocol again. He had labs drawn today; will have a port put in on Tuesday (small surgical procedure to put the quarter-sized port under his skin near his heart. Last time he had to have a hickman port which just hung out of his body and he couldn't take a shower without covering it up - so this will be much easier); an echocardiogram on Wednesday morning (he'll be having more of the "red devil" and they need to make sure his heart can take it); and finally he'll check in to the hospital Wednesday around noon for his first round of chemo in this second battle of cancer.

When we realized what we may be facing a few days ago, Nick asked to have a special gift given to him be put forth into motion. A colleague of Lee's (Steve Rosetta) purchased a tandem skydiving jump with a Navy Seal in San Diego at a fundraising event (Lee was the guest speaker) last September for his son. His son, however, said, "Oh, I don't think so..." so Steve sent the gift certificate to Nick. We've been waiting for the weather, school, etc. before scheduling but yesterday I was able to book Lee & Nick their flight, hotel and car. They will leave tomorrow and return Easter Sunday. The Navy Seal who has offered to take Nick up will keep the entire day open in case of weather issues and promises to give Nick a great weekend. Nick's doctor wanted to have Nick's port put in tomorrow but when I said we were going to thrown him out of a plane instead, she worked it in for next week. They need the port to heal for 5 days before starting chemo but they'll go ahead and use an iv for this round and Nick can have fun now.

Nick, unfortunately, will not be able to go to Nashville for the marathon, even as a bystander. His blood counts probably won't be too good so he'll have to trust his warriors to make him proud. In the meantime, he and his dad will get Nick moved back home. He will also be talking to his professors to see how he can work out the rest of this semester.

Dr. Chen plans on Nick having 2 rounds of chemo (one week in hospital, two weeks to recover) then check on progress with an MRI. He'll probably have another 2 rounds and if all goes well, he may have surgery to remove the residual tumor, assuming they can get clean margins. We'll see.

When I first read the results of his PET scan and absorbed the words "mass" and "metastatic disease", I immediately spouted my five favorite four-lettered curse words, turret style. then I thought it was time to have five favorite four-lettered peace words. It wasn't easy, but I came up with - love, pray, hope, care and live. So that's what I'm going to do now.

A big, fat thank you to Ryan Salmons (dad, Brad) - he is Nick's age, has the same cancer, also played high school hockey, also worked at Discount Tires, also has the same inspiring faith and courage - he included Nick on his website to ask for prayers and support. I would like to reciprocate and ask our regular visitors to check in on Ryan at www.teamsalmons.com. Very cool young man with a very cool family and just like Nick, could use your words of encouragement.

Ironically, Nick starts chemo EXACTLY one year to the day he was pronouned to be in remission. Thank you all for walking this journey with Nick and our family - you have helped make it bearable. The last battle and victory are a testament to the power of our prayers, together.

Here we go...

Love Lori

Results Part 3

Nick had an endoscopy today and they were able to retrieve 3 core biopsy samples. Dr. Adler said the tumor was "impressive". It is solid and intertwined with the splenetic artery with several suspicious pancreatic nodules too small to biopsy. The pathologists that read the initial slides would not confirm any diagnosis, however, they think it is rhabdo relapse. They retrieved enough tissue to stain and send out for further testing and confirmation of cancer. They have to say "5 business days" for results, but pretty sure we'll hear by end of week, including a plan of attack. They provided us with pictures from the ultrasound - could've been looking for a baby for all I know... I suspect Dr. Chen will want a bone marrow biopsy, too, but we probably won't meet with her until results are confirmed.

Nick has lost 9 pounds since last Friday. He still can't eat food yet because the pancreas is the workhorse of the digestive system, getting the stomach and liver going, and he needs the pancreas to just chill for a little while longer after being poked with a needle. Kid is hungry!

Kelsey had a double header softball game tonight (she won both) so we had a bit of normalcy to an upsetting day. My wonderful girlfriends spent the entire day with me at the hospital, for which I am so grateful. I think Nick will feel better tomorrow once he has a full tummy and had a chance to let some of the reality set in. It's rough, especially when we don't know what he is up against yet.

More to come later this week.

Lori

Results Part 2

We met with the surgeon today - nice guy with bad news.  It appears Nick has a cancerous tumor, just not sure which kind of cancer.  He and Dr. Chen think it may be lymphoma caused by Nick's prior chemo and/or radiation treatment or the rhabdo is back - both are very fast growing and did not appear on the CT scan Nick had on 2/9/09.  Yes, there is a chance it is not cancer, but they don't think so.  They also don't think it is pancreatic cancer, which is a good thing, oddly enough.  Pancreatic cancer has markers you can pick up on a blood test, so Nick gave blood again for the 3rd day in a row.  Hopefully this time, they'll also remember to test the liver and pancreas levels.

Nick is scheduled to have an endoscopy guided by ultrasound Monday at 1:00 p.m.  He has to be there at 11:00 a.m. however, and the procedure will take about an hour.  He will have general anesthesia and the scope will have a camera as well as a needle to obtain the biopsy.  They will look at the pancreas as well as the celiac artery.  They decided against going in through the tummy to get a core biopsy because of the risk of spreading any cancerous cells in his abdomen.  They feel they can get enough info; I'm not so sure.  There are 20 or so different types of lymphoma, and rhabdo is persnickety - both cancers need more tissue to differentiate type.  But, I trust Dr. Chen and we'll see what happens.  

They don't anticipate doing surgery any time soon as the tumor is too close to the artery by the spleen and they can't get clean margins.  If it is lymphoma, they will do chemo; if it is rhabo, we'll go straight to radiation to reduce the tumor.  It is extremely ironic that it is almost 2 years to the day that we were in Salt Lake City Regional Hospital hoping and praying that Nick had lymphoma in his cheek instead of rhabdo.

We should have results by late Monday afternoon; Tuesday at the latest if Dr. Chen wants to consult with any other specialists or if they need to do more stains (pathology tests).  I have sent a package of information (all the scans) to Dr. Albritton in Boston to see what she thinks of all this news, too.  Dr. Chen & Dr. Mulvihill haven't seen anything like this before.  Nick is proud of that.

Speaking of, I'm very proud of Nick.  After listening to what the surgeon had to say, Nick simply said, "Ok, I'm ready, let's do it."  The rest of us aren't nearly ready yet (are we ever?) but he remains steadfast in his eternal optimism and resilience to face it all head on.  Impressive, to say the least.  I'm just numb.  Nothing else to do but "do it" - we'll start on Monday.  In the meantime, please join us and pray like crazy that it is lymphoma, or better yet, pray for healing.

With love,

Lori

Scan results are... well.... interesting

Nick had a PET scan yesterday and the results were a little scary. His pancreas has a mass in it about 1 1/2 inch by 2 1/2 inches and activity is off the charts. There is a local lymph node also active but that is expected if the pancreas is under duress. HOWEVER, this could mean many different things. Before Dr. Chen would comment, he had another scan called an MRCP done today, which is a specialised MRI for the abdomen. Results of this scan told us nothing different than the PET scan. So, a biopsy is next. Looks like another cool scar is on the horizon. Dr. Chen is trying to get Nick in with a surgeon tomorrow but nothing is scheduled yet. I should confirm some kind of appointment tomorrow morning.

This isn't how we anticipated celebrating a year of remission and tucked away fears have come tumbling out of the firmly shut closet. We'll see if we can at least put up a temporary gate keeper to the dark door and take it one day at a time.

Until tomorrow, please say a prayer or two for Nick's tummy.

With love and gratitude,

Lori

www.nickswarriors.org

Dave Sheffield, our amazing controller in our office, took upon the task of designing a website for Nick. We asked him to do this as we are getting more and more involved in various fundraising and awareness events and thought a website could post all the volumes of information in one spot. Please visit and learn more about:

• Country Music Marathon
• Team Beyond Cancer
• Team Sarcoma
• Relay for Life (link to view Nick's DVD)
• Charity Softball Tournament

Thanks, Dave, for your hard work - it looks fantastic!

Nick is finally starting to feel a little bit better; I think he caught Kelsey's vicious cold virus and with his new normal white blood cell count of 4, it takes him twice as long to recover. Kelsey is still on the mend after week two. We took him to the doctor last week to see what was up with his extreme fatigue and they discovered a low glucose level. Could be from a poor diet or possibly his pancreas hasn't bounced back 100%, or a gazillion other things from having such brutal chemo and radiation treatments. His next scan is on April 1st so please keep him in your prayers. He's looking at ONE YEAR of remission!!!!!!

We all went up to Boise, Idaho to watch NCAA men's basketball games and we had a blast! The marathon training has been rough, to say the least. Lee is now the only family member that has stayed the course.

The fund raising has been incredibly successful due to the amazing network of friends of Jennie & Dean Magnesen, pulling in over $10,000!!!!! A special thank you to Colin Fryer, of Red Cliffs Lodge in Moab, Utah - he sponsored Nick and his teammates "Team Beyond Cancer" as well as an extremely generous gift for the marathon. Jennie and I still tear up when we talk about his generosity and the effect his gifts will have on the young adult cancer survivor community and childhood cancer research. Amazing.

I'll post after April 6th when we meet with Dr. Chen.

With love,

Lori

PS: Nick got an "A" on his last English paper!

Relay for Life

As you may know I was asked to speak at the Relay for Life kic-off event this Saturday, and I am thrilled to say that I did not cry during my speach. I can feel myself getting better at sharing my story everytime I tell it.
After the event was over and people began to leave, Jaimie (who runs the davis country relay) came up to me and asked me if I wanted to be their poster boy. After talking a little more with her what a poster boy is, she explained to me that they would like to take some pictures of myself with a child and use it for their advertisements. I was happy to help... so looks like other than a public speaking career, a modeling career is now a choice. Ha just kidding.
But all in all the kick-off event was a success and I had a good time. Now I am off to school to write papers and stuff.