Cycle 1, Day 8 - Update

Sorry for the delay in posting; Blogspot had to do some maintenance...

It has been a long week. This past weekend, Nick was very sick - throwing up, not eating and extremely fatigued and weak. We still aren't sure if it is the trial pills, antibiotics, fentynal patch or cancer. He got better throughout the week, eating very sporadically (strawberries, cantaloupe, etc.)

Thursday was our 10 hour hospital visit. His EKG still indicates an abnormal t-wave; doctors don't consider it a problem, but will keep an eye on it. His blood work indicates a slight elevation in a couple of of areas relating to inflammation. We are consulting with the infectious disease doctor to make sure the staph infection isn't getting any crazy ideas. Good news: the pain in his ribs is gone! Yay! Bad news: he lost 7 lbs in a week. Boo. He is now on a prescription (one that Cheech and Chong would highly approve) to help stimulate his appetite, lower anxiety and control nausea. The prescription bottle states it is used for anorexia - Nick said, "I knew it! That's what I have!"

Nick also got his temporary drain taken out Thursday, in between lab draws. Unfortunately, it was done without ANY pain medication (myriad of reasons) and it was almost more than he could bear. He came back in a wheelchair, all color drained from his gaunt face and he couldn't speak for awhile. I placed my hand on his arm, asked him if he was ok, but all he could do was shake his head, squeeze the top part of his nose to ward off any tears that may sneak out, and place his Penguins hat over his eyes. That was a tough moment for us both.

Good moments, though, happened earlier in the week. He asked if I was going in to work and I said, "No, I'm going to hang out with you, if that's ok." He said, "I'm LOVING it!" Later when I asked him if he was ready for a cup of tea, he said, "only if it is made with extra love..." And one night when I was getting him all settled in bed, he waved me over with both hands and said, "hug..." So we did.

Nick & Kelsey enjoyed spending time with Todd and extended family and our trip to Spokane was pure comfort for me to be with my family and I loved being with Lee & Carly. Nick got me a beautiful figurine of a mother and son as well as a mother's ring (Lee was the co-conspirator) for Mother's Day. Nothing sweeter than those two men in my life! Well, except for my daughters... Speaking of, Kelsey made 2nd team, all region in softball (wahoo!!!!) - high school ball is now officially over for her and she is anxiously waiting for her comp team to start practice soon. Carly is off again next week to St. Louis with her aunt Chris and entourage for a wedding and fun.

That's it for now - no doctors or hospitals until Wednesday and Thursday next week and they are short visits. Til then, here is another picture of Nick - always been a cowboy at heart.

With love,

Lori

There's hope!

An interesting week, to say the least. Monday began with a slight temp, concerning EKG, a leaking drain, high pulse rate and generally feeling very poorly. This was BEFORE he was given the trial drug. Tuesday was not much better, but he did get a new temporary drain and some relief of abdominal fluid. Yesterday was great; he slept well, managing his breakthrough pain better, and eating a bit more. Today, they redid the EKG and determined Monday's was probably off a bit due to pain, staph infection and pressure on the abdominal wall. They will do another EKG next Thursday and we will discuss concerns at that time, if any. Nick is feeling fairly well today.

The really good news came from the clinical trial. There are 3 parts to this trial - part one is for a patient (one over at Primary Children's Hospital) that is receiving 50 mg; part two is for a patient (Nick) that will receive 100 mg and the third is for a patient (tbd) that will receive 150 mg or for patients from part one and two that are progressing nicely without serious side effects. Today we were told that the patient in part one just had his first set of scans after 21 days and there is a definite reduction in tumor! He has a different cancer than Nick, but the two have the same abnormal ALK gene.

Nick is hospital-free until next Thursday, when we will spend all day there again to redo all the tests (blood, EKG, urine, etc.) He also has to check in with his drain doctor; he will have to have a permanent drain put back in sometime soon, probably after he is off iv antibiotics on May 16th. Nick and Kelsey (who is still nursing a gimpy knee) will go up to Todd's for the weekend. Their aunt Chris,uncle Stan and cousins Jessica & Kris are coming out to visit; I'm sure they will have a great time while keeping it low key.

Lee, Carly & I are headed up to Spokane, Washington to attend a surprise 80th birthday party for my aunt Mary Lee (don't worry, she doesn't read this blog). We will re-connect with cousins I haven't seen for years!

Thank you all for the continued prayers. Faith has sustained our hearts to set aside worry and embrace hope once again. I like hope - it's a good thing.

With love,

Lori

The sun finally came out!

Thursday and Friday were a bit difficult for Nick and he was in bed most of the time. He was not up to attending the pre-wedding dinner and dance Friday night, but he did manage to complete a dvd for Makelle & Austin, which played at the dinner. It was an adorable compilation of the two growing up through the years. I wasn't sure he was going to make it to the wedding on Saturday.

Kelsey was able to tape up her ankle to play again on Friday - a record setting day of miserable weather - a whopping high of 42 degrees. She was involved in a play, calling to catch a foul ball, colliding with the third baseman. Her metal cleat stuck soundly in the ground, while her knee continued to turn, hyper extending it. Good news is she caught the ball and got the out. Bad news is she really is not going to be playing ball for at least a week.

Saturday came and Nick called me in to help him get ready. By 1:45 p.m. we had him dressed in his tux, with his drain and iv antibiotic securely hidden within the suit. He took with him a vial of saline, antiseptic wipes, a new iv to replace at 3:00, bottled water and a Coke. He looked terrific!


The rest of us arrived at 7:00 p.m. for the reception and we stood in line waiting to congratulate the bride and groom. In front of us stood Makelle's grandma and she filled us in on the temple wedding. She said it was freezing outside but Nick was a trouper. Everyone's emotions remained in tact until the photographer took pictures of just Makelle and Nick. Both Makelle's mom and dad couldn't help but let the tears flow at such a tender moment. Her grandma teared up just recalling the memory to Lee and I, which made Lee and I tear up, leading Carly to say in exasperation, "Geez, can we not take you two anywhere?" Nick is very close to the Macrum family and they have been so good to him ever since our families have met. I am very, very grateful for our friendship. Makelle was an absolutely beautiful bride and her husband Austin is a gem, too. I hope to post some pictures soon. The sun finally broke through in the afternoon - it has been a long, cold spring so the sunshine was an extremely welcome sign!


I had thought Nick would be ready to go home as soon as we arrived, but he stayed for the entire reception, including having a dance with Makelle. He finally came home around 10:30, announcing he would be needing some help to get out of his clothes, asked for his pain pills, an Ambien and was headed for bed. We visited for about 15 minutes to fill me in on a few highlights of the night. Austin's mom had made Nick some cowboy pj bottoms for a groomsman's gift and he is still wearing them tonight. They are perfect.

We are to be at the hospital by 8:00 a.m. tomorrow. They will give Nick one dose of the new drug and monitor his heart and blood work throughout the day. We will be there for about 8 hours. On Tuesday & Wednesday, he will just be there for an hour or two for blood work and then Thursday will be the official Day 1 of Cycle 1 and will take the new drug (pill) twice a day for the next 21 days. He will need to go in once or twice a week for lab work and on the 21st day, he'll have another PET scan. If Nick's cancer seems to progress, there is still a possibility he will go back on chemo.

Nick seems to be feeling better tonight and we watched the first disk of "Modern Family" - there was a lot of laughter in our home. The sunshine worked.

As always, we are all very thankful for the support given to our family.

With love,

Lori

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