So much has happened since my last post. It's now August 9, and Nate continues to endure and fight on. I wrote a partial update in April, June, and again in July but never finished or posted them. The following is a recap of our entire summer.
Friends Make Everything Better
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| Nate and Lance and their "Bro hug". Love these guys! |
Today (April 18) we were joined in the infusion clinic by Nate's dear friend from high school. It's so amazing how a friend can make things feel so light. I guess that's what they mean by "bearing one another's burdens to make them light". Thank you Lance, for brightening our day!
During the next treatment, Nate's brother, Ryan, brought lunch and sat and visited with us. Good company always helps move the time along at those long appointments, and we're grateful for the support.
Today is Nate's third of six scheduled chemotherapy treatments. The first treatment was a little rough and left him feeling really green for the first 12 days. He really only had one day of feeling good before it was time for his second treatment. As always, he powered through it all and went to work and coached Sydney's softball team. In my last post I mentioned our plans for the first ever Hardy family backpacking trip to Southern Utah over Spring Break. As luck would have it, the weather bummed out on us and we decided to change our plans at the last minute. Nighttime highs were supposed to be in the high 20's and we couldn't ruin the kids' perception of backpacking on our first trip all together! We're determined to reschedule our adventure soon. We ended up going down to Moab, Utah and we had a great time! The weather was still pretty chilly but the hotel kept us nice and warm. A few highlights:
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| Delicate Arch |
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| Emma enjoyed the view...always bendy. This girl never stands on two feet! |
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| Dabbing on the Edge |
We had a great time hiking around Arches National Park and Canyonlands. We started our adventure on Nate's birthday, March 28. Happy Birthday Babe!
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| Happy Birthday Nate! |
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| Cutest Easter Kids around! |
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| We finished the ski season out strong |
Seth completed his Eagle Scout Project! He built a lost and found rack for our elementary school. It turned out so nice! I'm proud of this kid!
Back to present day...June 9, 2016...
The day I started that post, I was sitting in the infusion clinic wishing we were somewhere else and feeling really anxious and uncomfortable. Not an unusual feeling for me in this setting, but I was also annoyed because of the pain I had in my shoulder and side. I thought I'd pulled a muscle or slept funny. To make a long story short, the pain worsened through the evening and by the time I wanted to go to bed, the pain was so bad that I couldn't lay down. After a long 3 or 4 hours of trying to sleep in a chair and having our crazy kitten jumping all over me, I decided to drive myself to the ER. Before you even think it, Nate was all drugged up from chemo and sleep meds so no, he wasn't available to drive me. No lectures please! I really just thought that I needed some old school muscle relaxers and I thought I'd be home in time to get the kids off to school. It was 3 a.m. so I wrote Nate a note and left.
After some blood tests and an x-ray, it was determined that I probably had a pulmonary embolism, or blood clots in my lungs. After more tests, CT scan, ECHO, ultrasound of all major vessels, they found 3 clots in my lungs. Two in the right and one in the left. UGH! REALLY?! That was really my only thought at the time. That and, "don't people die from these things"? Turns out it's about 40% mortality. EEK!
Nate woke up to our 14 year old daughter telling him to read his texts, and shortly after 9 a.m. Nate ran into the ER all ready to give me a scolding. I really can't blame him, but I had a pretty strong case. Had I woken him up to take me he would've been arrested for DUI and would've required a separate bed in the ER. I actually ended up in the room next to the room where our life turned upside down in 2012 when Nate was first diagnosed.
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| This is a little humble payback to Nate after all the photos I've posted of him! |
Since I was otherwise healthy, they entered me into a study for PE recovery at home vs the hospital, so I got to go home on blood thinners. I arrived home to a very clean house since my amazingly wonderful friends rushed over to clean it top to bottom in the short time (12 hours) I was in the ER. The days following were filled with acts of kindness including dinners, treats, help with carpools, and my cute kids stepping up to do whatever they could. We even had a group of friends arrange for one amazing painter/friend/neighbor to finish painting the inside of our house (a project that was interrupted by dumb cancer relapse after being less than half finished back in January).
I had pulmonary infarction (dead tissue) and pleurisy in both lungs so it was pretty painful for a few weeks as my body figured out what to do with all the dead tissue. Breathing is really overrated sometimes! I'm grateful that this little episode didn't have a worse outcome, and I can handle blood thinners for a few months.
Enough about me.....it is now July 7 by the way.....Nate continues to be a trouper! He completed four treatments of Folfox but the side effects were getting so bad that we decided to have an early CT scan to see if he was even benefiting from it. Sadly, no. The tumors were mostly stable, but they did see growth in some areas. Nate agreed to switch his treatment to Fulfury, which is another chemo he did three years ago. He ended up with a partial bowel obstruction in May/June and that was really the final straw. He became so worn down from the additive side effects of the two regimens that he started looking at different treatments. Without much data and options with appendix cancer, there's just no clear cut path to take.
One of Nate's best friends that he's known since college is a pharmaceutical rep and started selling one of the new immunotherapy drugs not too long ago called Opdivo. He's the one who helped us find Nate's new oncologist as well. We talked with him a bunch about the drug and Nate decided he wanted to try it. Dr. Lambert took his case to the tumor board at UMASS and they all agreed that it was worth a try since the chemo wasn't working and Nate was so run down. With our friend's and Dr. Gray's help we applied for the drug and the copay assistance program with the manufacturer. Since the treatment is not FDA approved for Nate's tumor type, insurance won't cover it. At almost $13,000.00 a pop every other week, we needed some help paying for it. The approval came back in just over two weeks and Nate is currently having his third infusion. The chemo has mostly worn off and he's feeling great! This drug doesn't have side effects like the chemo does and I can see that "my Nate" is coming back. We're hoping and praying that he continues to feel well AND that the Opdivo is actually working. Double bonus.
As I understand it, Opdivo teaches the immune system to recognize cancer cells as foreign so it can attack them. Cancer cells have a way of camouflaging themselves to look like a healthy cell so our immune system leaves it alone. Opdivo has shown great results in other tumor types but as far as we know, it hasn't been given to appendiceal cancer patients. Here's to hoping that Nate will be the new poster child for appendix cancer treatment with immunotherapy! We're praying so hard for good news on the next scans which will take place in about six weeks.
Nate's still working everyday and doing plenty around the house. We're trying to keep busy this summer and have already had some fun adventures. We spent Memorial Day in Island Park with my family at my parent's new cabin. We had a great time with cousins on the lake and outlet fishing.
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| Melts my heart to watch these two |
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| This kid loves to fish...... |
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| So does this kid! |
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| Sisters on a frog hunt |
We were lucky to be able to participate in our Stake's Trek with our oldest two kids, Seth and Emma. We were supposed to go on Trek four years ago but shortly after we were asked, Nate was diagnosed. So instead of going on Trek that year, Nate was laying in a hospital bed in Massachusetts. However, it all worked out because four years ago our kids weren't old enough to participate so this year we got to experience Trek with them!
Trek is an experience our stake does every four years to honor our church's pioneer heritage. The kids pulled packed handcarts across a portion of the actual Pioneer Trail in Wyoming for three days. We built a replica of the Nauvoo Temple and even had a good old fashioned Hoedown! It was an amazing experience and my respect for the kids who participated and for my own pioneer ancestors grew immensely. It was so fun to be there with Nate and my kids!
I think we would've made pretty good pioneers!
Seth pulled the handcart more than his share of the time and I think he actually enjoyed it!
This is a replica of the Nauvoo Temple that the kids built in six hours. It was such a meaningful experience for all involved.
Nate and I were in charge of the murals we painted to hang in the temple, maps which show all the locations of the 150 operating LDS Temples in the world, and the 150 flags which represent each temple.
Trekking with my besties was an extra bonus!
Nate was so in his element. I loved watching him in his pioneer digs!
Nate had his first Opdivo infusion the day before we left.
A few days after we got home from Trek, Nate headed to St. George with his high school buddies for some much needed "guy time". During the trip Nate had to take a day to attend the Grand Opening of his latest work project in Veyo, Utah. It's a waste heat capturing facility that he was project manager for.
We're all very proud of Nate!
Lance, Nate, Ben and Boyd. Love these guys and the support they are to each other.
Next came the Fourth of July and all the festivities surrounding it. The night before the Centerville 5k, Sam decided that he wanted to run and asked Nate to do it with him. Being the amazing dad that he is, he took Sam at 6 a.m. to get registered and they ran the race together.
The next weekend was Farmington Festival Days and Nate and Sam convinced Sydney to run that 5k! I stood happily on the sidelines and cheered my heroes across the finish line. Nate is not only an amazing dad, he's one tough survivor!
Nate has had infusions every two weeks all summer long and continues to press forward with faith and fortitude. He's a wonderful example to me and our kids of hard work, mind over matter, and living life in spite of huge trials. He's teaching me to make the most of the time we have together and he's the driving force of most of the fun things we do as a family.
Emma was busy with parades and cheer camp all summer long!
We had planned our first Hardy Backpacking Adventure over Spring Break but got rained out. Our little Sydney was determined to get our family on that trip this summer and helped motivate us to get it planned. Nate started planning our trip and we ended up going to the Wind Rivers in Wyoming at the end of July for a four day, 20 mile adventure. We packed in everything we needed and the kids were troopers. They each had their own packs and they were so good to each other as they helped each other in turn. We caught lots and lots and lots of fish, heard bear stories from other hikers (but avoided the lakes they were coming from), ate great food, made two camps, and had a great time around the camp fire. This was one of those trips I'll never forget. Nate was happy to take us to his "paradise" and share his love of the mountains with us.
This is Nate in his favorite place to be...mountains with crystal clear rivers and streams with a fly rod in hand.
All ready to hike to the next lake after breaking down our first camp.
Our "kitchen" at camp #2
Sam ran down to the lake any time he could to fish. I think he's hooked! He caught 24 fish in one day!
It was a huge success and we can't wait to do it again. It's worth all the effort in the world to have our kids all to ourselves for a few days in the beautiful wilderness! It was fun to share our love of backpacking with our kids because it was such a big part of our lives before we had them. It's fun to revisit our old passions and we hope our kids will want to do it more often now that they're all big enough to do so!
Even with Nate's biweekly treatments, he's finally feeling better as the effects of the chemotherapy have worn off. The new treatments don't have the same nasty side effects of the chemo so I feel like I have the old Nate back! It's so wonderful to see him have more energy and a little spring in his step. He's endured so much and I pray with all my heart that this treatment will help him overcome the cancer.
August 2nd marked our 20th wedding anniversary! Nate surprised me with a quick trip up to Park City. I honestly never thought we'd get to celebrate this anniversary together and I'm over the moon happy that Nate is here with me and that he still loves me after all these years. I'm grateful for all the "fight" he has and for his desire to take such good care of me and our children. He always knows just what I need and is always willing to do whatever he can to make me happy. Here's to another 20 years together!
The summer has flown by with Nate's treatments and our little adventures here and there, and I'm not ready for it to end. This past weekend we spent some time at Nate's parents' cabin up in Bear Lake with some friends. Once again, it was so fun to have the kids as a captive audience! It was great to relax and leave the world behind for a minute more before the hustle and bustle that August brings.
Juanito Bandito and the crew at Pickleville Playhouse. A family tradition!
Sam was kneeling in a hole when Seth decided to bury him. The trick was getting him out!
Sydney was STANDING in a hole and soon became the cutest Cheeto eating mermaid at the beach thanks to Dad!
Brothers...what more can I say?
We are blessed!
Today Nate has his first CT scan since he started Opdivo. We're hopeful, but still nervous about what they'll see. The Opdivo doesn't have results as quickly as chemo might because it has to "teach" the immune system how to see the cancer. We've been told that it's harder to see any results this early on in the treatment. Our doctor even told us that sometimes the tumors look bigger because of the immune response that's happening within them. It's hard to get our hopes up but we really don't have a choice. We have to keep on hoping and keep on praying for a miracle. I'm all ready for Nate to be the new Poster Child for Immunotherapy and Appendiceal Cancer....isn't that catchy? Can you see the poster now?
Thank you for your continued prayers and words of encouragement because they are much needed. We are tired of this mountain we've been climbing for 4 1/2 years now and we would love to rest in the valley for a season. I'll update with scan results soon. Love to all!
