Gallbladder

I posted partial updates on facebook, so now I'll do my best to get the full story on here.  Of course the full story is still only a partial story, but I'll try to remember all the main stuff.

John had 3 transfusions in a short amount of time.  Because of that, Dr. Wright said that he should stop his targeted therapy pills.  So John stopped those on Dec 10th.  The reason could have been that they weren't working  and the cancer was interfering with his blood production. Or the reason could have been that the pills were working but causing his blood counts to drop super low.  The reason didn't matter though because the transfusions were getting closer together.

During this time, we found out that Dr. Wright is leaving Huntsman in January.  We found that out basically the same time she decided John should stop his pills.

At this point, she decided on a new chemo regimen that would be 3 different drugs that he would get 1-3 of them every week. 

Because it takes so long to get new drugs approved through insurance, then I think this whole year as we started a new chemo, we went right to work getting the next option approved so that it would be approved by time we needed it.  This cancer grows very quickly and we don't feel comfortable with too much time in between chemos.  When he started the pills, though, it was close to the end of the year and our insurance was changing January 1, and scans were scheduled for mid-January.  So we told the staff who works on preauthorizing everything not to worry about preauthorizing until our new insurance was set up.  So now we are at the end of the year ready to start a new chemo and the whole preauthorize process hadn't even started.  So now we had people scrambling to try to get our current and our new insurance to approve the new drugs so that once John starts the new regimen, he can continue without delay.

So, Monday the 12th, that is what our situation looked like.

Tuesday we ended up at an eye doctor appointment because John's eye had been swollen for a few days.  He had pink eye so they said just wait it out.

Wednesday John felt pretty crummy.  And Thursday morning he went to do labs to see if he could get another transfusion. 

Scans originally scheduled for mid-January were moved to Thursday so that he could have scans before starting a new chemo.  He tried to get a transfusion while he was at the hospital for scans, but it didn't work out with the last minute timing.  So by now he had turned yellow and I was getting nervous because he was so sick and now yellow.

Friday morning he got a platelet transfusion and thought for sure he'd feel better within a few hours.  Instead he felt worse and we went to the ER that night.  The Provo ER transferred us up to inpatient at Huntsman. (No ambulance or anything, I just drove us up here.)
 
Somewhere in all of that we found an out-of-state doctor who squeezed us into his schedule.  There aren't a lot of Sarcoma Oncologists that have both pediatric and adult experience.  (I think most people reading this know John's cancer is super rare, but more common in kids than adults.)  So John contacted the best two in the nation and one responded and agreed to see John before the end of the year.

So back-tracking to the hospital/ER visit.  The symptoms looked like liver failure stuff, but with scans and tests, they decided it was John's gallbladder that was causing the symptoms.  So they just watched John for a couple days and then Sunday they put in a gallbladder drain.  Then they watched a couple more days and then put in a wider drain.  During all this time, different teams of doctors were coordinating and taking things slow because A-that's how it goes in a hospital and B-John's immune system was down and he had low platelets so he wasn't really healthy enough to do anything else.  John's liver enzymes and bilirubin came a little closer to normal after the drain was placed but then they just stayed abnormal but level for a few days.  John and I decided if they weren't going to do anything but watch, that maybe he could go home.  So we asked and they decided to let us come home since he had remained stable and they didn't think anything else they could do was going to benefit him.

So we went home on the 23rd. John stayed in bed basically all weekend. He never felt any better after getting home and couldn't keep any food down.  He has bruises everywhere.  His yellow didn't clear up at all. He had a hard time keeping his eyes open; he had a hard time sitting.  His drain was supposed to be draining bile, but it was just blood draining out.  He made it downstairs for a couple visitors. He made it up for a short part of our Christmas Eve party and Christmas eve pajama pictures with the boys.  He made it downstairs to watch the boys open their gifts on Christmas morning.  Then he spent the rest of the time in bed with a few visits from my family members and also the boys to show off their Lego creations.

The day after Christmas we headed back up to Huntsman. They gave him platelets last night. They've gotten his pain under control.  He's gotten two units of blood today.  They found a blockage in his intestines, so he got a shot and that helped clean things out.  He still can't keep food down though.  Now we are just taking things a day at a time.  Right now we are waiting for an MRI of his abdomen, which will catch his liver/gallbladder area.  After that the doctors will discuss what they see and let us know if they have any type of a game plan at that point.  

So now as far as chemo goes, it's still in process of getting approved because it was initially denied and now is in the appeals process, I think.  No chemo, though, until his liver/gallbladder issues are resolved.  We cancelled our out-of-state appointment with the other Sarcoma Specialist.  

Scans showed increased cancer activity in his skull/head.  The cancer in his spine was unchanged.

I tried to mostly stay at the hospital during all of this, but I had a test I had planned to take on the 21st of December.  John asked if I could take it sooner, so I ended up taking it one night while he was in the hospital that weekend before Christmas.  Carson was SO excited about his Christmas concert, so I went to that.  I'm able to sleep at my grandma's - she lives near Huntsman.

During all these last minute appointments and rescheduling appointments is a lot of childcare coordination.  We have had a lot of help, early morning help, last-minute help, cancelled help and people letting us change plans on them a lot.  I try not to schedule child-care help until I know what is going on and then by time I know what's going on and get things scheduled, it sometimes changes. So I try to impact as few people as possible with all of that, but obviously it still happens and people are still nice and still offer to help; I really appreciate that!  The more help I coordinate when changes come up, the more stressful it is to make sure I contact everyone to make sure they all know the change of plans.  So really and truly, thank you to everyone who lets me be a crazy person about scheduling and coordinating!

That is a really long post, I hope I got all the major details.  Even though John felt miserable we were all so glad he was home for Christmas.  Thank you all for your prayers, we feel them every day helping us get through all of this.  The phrase it takes a village is sure true and we are blessed with the best village ever!

Cancer Pain

John had fevers a couple nights in a row, and a lot of pain all over.  So we went to the ER yesterday.  We left our house at 8:40 am and got home about 10:30 pm.  A HUGE thank you to our wonderful friends and neighbors who took care of the boys while we were gone so long! (And after watching our boys all afternoon/evening, one of them even cleaned our house. And others have done this too.We seriously have the kindest neighbors!)

The ER ran blood work and UA to see if they could find an infection.  So far they haven't found anything, but sometimes that can take a few days.

They did find that his red blood counts and his platelets were low, so he got a transfusion of each.  That helped him feel better.  Chest X-ray didn't show any infection in lungs.

About mid afternoon, we remembered to also tell the doctor that along with all the pain, John could barely move his left leg.  So she did an x-ray on his leg.  X-Ray didn't show any fractures.  She asked John do move his leg for her.  She was able to pinpoint where the most pain was.  She ordered an MRI try to get a better picture of what was going on right there.  We didn't want to mask the issue if we could figure out for sure what was causing it and get it treated correctly.  We really appreciated that she was willing to get to the bottom of it.  After the MRI results came back, she said it was cancer right in that area.  So we left with 2 different types of transfusions and a steroid to hopefully help his leg.

They were also able to get his pain level from an 8 to a 5, so that is nice.  Hopefully it will keep going down as he has learned some more ways to manage it.

We aren't sure about all these pain issues that keep popping up and turning out to be cancer pains, but the tumor on John's forehead seems to be shrinking, so we will keep hoping that this new drug is working.

Time for an update

So, in September, John started a new chemo Yondelis (aka Trabectedin).  It was a 24 hour infusion once every 3 weeks.  He did that probably the middle of September and then again the first part of October. He seemed to do ok with the infusion the first time. He had muscle pain everywhere for a day or two. He was sick enough to stay in bed starting the third day, and by the fifth day he said he was feeling better. But then that same day, he got a bad cold or something.  So he ended up going back to bed for probably another week.  During his cold, he decided that we should go on a short trip after his next dose.  So we planned a 4 day trip.  Then he started feeling even better and we extend our trip.  Then he found out his brother he wants to see on our trip is going to be out of town, so he adds a couple more days to the trip so we can visit with his brother.  So now our trip is 12 days long. Then he gets his next dose.  He didn't get better by day 5.  On day 3 he started having major chest pain.  We think it might go away by the next day and it doesn't.  So we go to the ER to run all the heart attack tests.  They also checked for blood clots in lungs, pneumonia and other stuff.  They can't find anything wrong so we come home.  Then we kind of keep thinking it's going to go away.  By Thursday, the chest pain is still bad.  So we go to a different ER.  They run all the same tests plus a couple more.  They decided that John's heart looks healthy and that the pain lines up with cancer in his sternum. That night on the way home from the ER, we decided that we would still leave for our trip the next day.  By time we made it home we decided to postpone our trip to leave on Monday.  Suddenly, on Friday morning John feels better.  So we changed our flights again and left Saturday morning. (So now our trip is 11 days long.)  Our 5 year old exclaimed that, "this is the happiest day of my life!"  (Keep in mind, we are leaving to look at leaves in New England and earlier this year we went to Disneyland....)  Just look at that smile!

Aside from John's lingering side effects that cleared up by day 5, we had a perfect trip.  The kids were good, the weather was perfect, the leaves were incredible!!

We went to Boston, Cape Cod, the White Mountains in NH, we also made sure to drive over the border into Maine so we could add an extra state to our list.  We also went through Vermont, Connecticut, New York, New Hampshire, New Jersey, and Pennsylvania. We counted our layovers in Baltimore and Chicago for  11 days 11 states.

 John and I went to the Sears Tower in Chicago and these two have been wanting to go to the top of a skyscraper since then.  So this was super exciting for them to go to the top of the Rockefeller Center!

Scans were scheduled for Oct 25th.  So we flew into Salt Lake on Oct 25th, dropped John off at Huntsman.  One of our many wonderful neighbors let me drop off 3 kids who had been awake for 14 hours at her house.  She watched the kids so Carson could make it to his first ever basketball practice/game.  I went back to Huntsman to pick up John.

Oct 26th, we were luckily still on East Coast Time so our 7 am MST appointment was bearable.  The scan results weren't completed yet, but based on blood tests the doctor recommended changing treatment.  The blood tests showed elevated protein levels that indicate eventual muscle/heart/kidney failure if he stayed on that treatment.  So that automatically means that it's not a long-term option to stay on, so we may as well start on something new.  By the end of the day, the scan results were back, the doctor called to let John know that it appeared the Yondelis was probably working, but still recommended switching drugs at this point to avoid the muscle failure.  She said there were a couple new spots on the scans but some of the old spots had decreased in activity and/or size.  So the theory is that the new spots grew in between chemo treatments and that the Yondelis was likely working.

By the end of October, the targeted therapy pills were approved (after we appealed the denial).  So we got the Votrient (aka Pazopanib) pills.  We decided to wait a couple days to start those so that we could take a trip to celebrate John's dad's birthday.  John started those pills on Oct 31.  He spent the first week on those pills pretty much in bed, but the side effects are starting to even out a little bit and he has been up and pretty healthy/active during the days.

During our trip John started having night sweats.  Once he started the Votrient, he spiked a fever, so we let the doctor know.  She said if he had more, to come in to get checked out for infection.  So that night, he spiked a fever again.  So we ended up in the hospital ER again.  Seth, the PA, wanted to admit him overnight, but we talked him into letting us just come back the next day.  That night, John still had night sweats but no fever.  So we went back to the same ER to have them double check things.  They let us come home without keeping us there very long.  Night sweats are still happening, but no more fevers.  They determined that the night sweats are most likely caused from tumors. 

Seth was one of our many favorites on the 4th floor.  He transferred to a different unit, but somehow ended up filling in the one time this year we have spent the night on the 4th floor.  And then he just happened to be filling in in the ER last week when we were there.  Anyway, it was nice to see someone who's been part of our journey from the beginning.

We have had a lot of help from a lot of friends and neighbors.  We so appreciate the kindness shown to us as we navigate through all this craziness.  It sure makes things easier with a support system like ours!  Thank you all for your continued prayers and support!

Chemo Starting Up Next Week

A HUGE thank you to all those who joined our fast last week!  We so appreciate your faith and prayers on our behalf!

Insurance denied the targeted therapy pills.  So while we fight them on that (it could take up to 12 weeks to get another decision), John is going to start a chemotherapy next week.  It will be an IV for 24 hours at Huntsman. Since we are starting this one, we are going to do a couple rounds of it to see if it's effective. So we are off next week to visit our old friends on the 4th floor of Huntsman Hospital.

And for those wondering what we did fun while we were in between treatments... Wednesday night, John and I took my kayaks on the Provo River for my birthday! Then last weekend we went camping at Lake Cleveland with most of John's family.  It's crazy how much time and energy can go into planning a family reunion when you have a year's notice.  Somehow we pulled one off in about 3 days.  We found out Monday that John wasn't going to be on chemo for the week.  By Wednesday we decided that we should go camping.  I think maybe by Wednesday night, everyone had an invitation.  Somehow, we ended up having all of John's siblings (and most of their families) show up to camp with us Friday night. 

I think we are starting Plan G....

John had scans last week and we got the results Monday from the doctor. Cancer has spread from his spine to other bones including his front right skull and a new tumor behind his right eye.

To be blunt, we are hoping for a miracle at this point. While the doctor has a few more chemotherapy options, she doesn't have any left in her arsenal specifically studied for treatment of rhabdomyosarcoma.  If I understand correctly, the next option we are starting has had success in other sarcomas - either in shrinking tumors or at least stopping them from growing.  Even though sarcomas are all the same family, the different sub-types are so different it's hard to say that because it works for one sarcoma that it will work for the rest. 

This next drug John will try is actually a "targeted therapy" rather than a chemotherapy.  Targeted Therapy attacks cancer cells where chemotherapy attacks all fast growing cells.  We are going to try out this drug for about 2 months to see if it will work in John's case.  If it does, then just like last time, we will continue it as long as it seems to be working.  If it doesn't work, we have other options.  Those other options just haven't been studied specifically for Rhabdomyosarcoma. 

Early in John's diagnosis I read blogs from other cancer families.  They were so insightful and said so much about the emotions and lessons learned during their cancer fights, and they so accurately described a lot of what I was feeling and going through. I have mostly kept this blog very specific to the facts around treatment, but this time I thought I'd give a glimpse of my thoughts and emotions. I'm not as fluent in emotional writing as other bloggers, but here's an attempt:

While this is hard news to hear, and it definitely made me cry (as many have seen), I'm still hopeful. I read a book called The 10 Habits of Happy Mothers by Meg Meeker, she quotes someone in her book who says, "I expect nothing, but I hope for everything...and believe in God's Goodness." Sometimes I may let my hopes become my expectations, but when I run into that I try to remind myself of this quote and keep hoping for the vision to see the good in whatever happens.  Sometimes the good is not immediate, but if I'm waiting for the good then the hard parts don't seem so hard because I know I'm fighting for something worthwhile.  I'm fighting for an eternal family. I know that an eternal family isn't going to be easily achieved and so I know have to step up to the plate and practice and improve until I'm able to hit that home run (which is a goal that takes an entire lifetime of work).  Cancer has taught me that every thing that happens in a day is my practice time - and just like people practicing to be the best musician or athlete, I will have to get bruised and tired and sore to become my best self.  I feel like the people King Mosiah gathered in The Book of Mormon.  In Mosiah 25, Mosiah read some journals to his people.  The people listening to the stories were filled with joy from parts of the story, with pain and anguish, they were filled with sorrow and cried, but "when they thought of the immediate goodness of God...they did raise their voices and give thanks to God" (vs 10).  Our story has pain but it also has joy and while I can feel both those emotions, I give thanks to God for all He is teaching me and His patience with me when I take so long to learn some of the important lessons I need to be learning.

I have gone through all kinds of emotions during this fight.  John and I try to stop and recognize what we are feeling in sorrow, pain, or confusion and then also acknowledge the blessings and good parts.  We are not perfect at this, but we went into it knowing that it was a test of our faith and decided early on that we were not going to use cancer as an excuse to be anything less than our best.  We know we have a lot to improve on to be our best selves, but this has been an awakening to things we can improve on. We are working harder now than we ever have before to live to be an eternal family*.

Thank you all for your continued prayers, love, and support.  If any of you would like to join us in a fast this Sunday for this next treatment to be effective, we would appreciate it. 

*We believe that life continues after mortal existence and that in the temple, we are sealed together for eternity.  https://www.mormon.org/faq/mormon-families

Scan update!

We have another set of scans out of the way. Last Monday we went up to Huntsman to get the results. The last scans indicated that the chemo John had started in March wasn't effective at all and that metastases has worsened in his spine. This time, 2 months later, the new scans showed that there was no new growth or progression of disease- definitely good news and a step in the right direction! We will continue on the current treatment schedule (1 week of chemo, 2 weeks of recovery) for another couple of months and check again with another set of scans later in August and go from there.

John just finished another week of chemo on Friday- he doesn't get too sick or nauseous from the drugs, just completely exhausted and drained.  Thankfully he recovers pretty quickly and we are blessed and grateful to be able to go do some fun things.

Heber Valley Railroad

Smores

Hike to the Grotto 

Just hanging out

Chemo update

Last time around (three weeks ago), John did chemo for the 5 days and the next week he was exhausted.  Then the second week off chemo, he felt pretty great again.  So we spent Saturday with family and tried to go shooting with John's new targets.  The spot we wanted to go to had a new fence around it and cattle.  So we ended up at my dad's shop shooting my little sister's bb gun.  Then on Sunday we went to church, John napped a lot of the day, then we went to a family birthday party.  We came home, put the boys to bed, and started up a fire in a borrowed fire pit.  John and I had a nice little s'more party to get ready for this week.  This week is chemo again for 5 days.  Then two weeks off.  The second week off will be more scans to see if this chemo is working. 

Slight Setback & Another New Plan

John finished two rounds of his treatment and had some back pain. So he callled his doctors and got the ball rolling on getting scans scheduled. He had scans and found out on May 9th that the cancer in his spine had continued to grow despite the chemo. So we loaded the kids in the car Thursday morning and went to Yellowstone. John's parents and two siblings came along with us and we all had a blast. We hiked Craters of the Moon, hiked Yellowstone, and canoed and 4-wheeled Island Park.

Monday the 23rd, we had an awesome neighbor come to our house super early so we could get to Huntsman at 7 am. John had a quick surgery (it only took 1 hr from wheeling him out of pre-surgery and wheeling him back in). The surgery was to put a port back in his heart. After surgery he went to the infusion center and started his newest chemo plan. The new plan is a short burst of mesna,  then 30 mins of cyclofosmide, and 30 mins of topotecan. This is every day for five days, then two weeks off. After he does this twice, we will scan again. If its working we will do this another 3 times and scan again.

Chemo Round 2

Round 2 was so much better than round 1.  John had the IV of Vincristine on Monday afternoon, then came home and took his chemo pills and oral chemo (irinotecan & temozolomide).  He got sick but by morning he was feeling better.  He ended up going to work every day, except for Friday.  Friday he worked from home though.  John got his neulasta shot on Saturday.  Tuesday blood labs were way higher than normal (because of the neulasta). John has been going to work every day this week as well.

The oral chemo is a liquid in a syringe.  It tastes pretty nasty and made John throw up one of the days, but then he found that if he rinsed his mouth with mouthwash he could keep it down.

The pills can't be touched.  So John has to pour his two pills into a cup and take them without making skin-to-pill contact.

I'm not sure what kind of questions anyone might have at this point.  Let me know if you have any!

Hair Loss^2 + No Chemo This Week

John shaved his head Monday night.  The kids didn't seem to mind dad with a bald head, but Thomas wondered why mom never cuts her hair.  Haha! 

Chemo was supposed to be on Monday.  We were happy to be in Provo for this one.  I usually think Salt Lake isn't so bad or so far away, but after going to Provo this week, I realized how incredibly nice that was to be that much closer to home!  So we showed up in Provo, had labs drawn, waited for lab results, and then found out that John's ANC was too low for him to receive chemo!  I don't know if John was surprised at all, but I sure was!  Last week his counts were fine!  I thought for sure his counts wouldn't still be going down that far out from chemo.  Anyway, we already had dinner lined up and a babysitter, so we took advantage of the situation and John worked and I thawed the ice out of our deep freeze. 

The nurse in Provo coordinated with Dr. Wright in SLC and they said we could choose to try again Thursday or just wait until Monday.  John said he would do whatever Dr. Wright recommended, so we are waiting until Monday the 18th to start the next week of treatment.  To try to avoid this during the next round, the doctor is adding Neulasta into the treatment plan.  (When we started treatment back up, the doctor said we might do Neulasta, but for the first round she wanted to not do it and see what John's blood did on its own.)  Neulasta is a shot to the belly that helps rebuild ANC counts.  

Week 1 Redo

We survived a second week one of chemo!  The boys had a blast at all the houses they went to this week.  A huge thank you to everyone who watched them for us!  And we know that we have a long list of more people who are willing to help going forward; thank you to all our volunteers!  My heart broke when I overheard a lady trying to schedule her treatments around her kids' schedules and she said that she couldn't work out one of the days because she didn't have anyone to help her.  I wished that I could have offered some of the help we have to her! 

Our days this week were spent 2 hours driving round trip and about 5 hours in the hospital. We check in before they will get the chemo ready.  Then we wait about an hour and they give pre-meds to help with the nausea.  Then they give that a little time to kick in.  Then John received a 90 minute infusion, then there was a 30 minute gap before they could give the next chemo which was another 90 minutes.  (The first day is the only day he has three drugs and that third drug only takes 5-10 minutes.)  Needless to say, I got a lot of studying done, and John got in some work hours.  I will say this about the infusion center: when they say you are done you can walk out the door!  With all the times John was inpatient for chemo, they would say you are done and you could still be stuck at the hospital for hours until someone officially checks you out of their care.

We found out that the second drug will be covered by insurance as an oral medication.  It's not really a pill, but it's a liquid that John can drink.  So next time around that will be nice for several reasons.  It should be tolerated better than the IV.  There won't be an IV every day for 5 days in a row.  And I won't have to drive around a nauseous husband! (While John never lost his food in the car this week, Daniel did on Saturday.  So that's made the weekend fun; and I'm so sorry to my neighbor that had him when it started!)

John will have labs drawn this week to see how the chemo affects his blood, specifically his immune system.  We are hoping that John falls into the expected outcome, where his immune system doesn't get low enough to send him into neutropenic fevers.

Now we have a break until April 11th.  And that should be the only day we have to go to the hospital for an IV chemo that week.

New Round of Treatments

The past two months have been pretty crazy.  I started school (I'm getting my Bachelor's in Accounting).  John and I were able to go to Fiji.  We got home from Fiji and had John's regularly scheduled scans to follow up on his cancer.  We found out that they were concerned about his spine and had an MRI done on his spine to get a better picture of what was going on.  The day after his MRI, we met with three of his doctors.  We got different feedback from all of them about their impressions from the scans. They ranged from super hopeful that there was no recurrence, to go fight this thing again. By the end of the day, we had a biopsy scheduled for his back and were told that the tumor board would discuss John's case and get everyone's input-at which point they would decide for sure whether or not to do the biopsy. We met with those doctors on a Thursday.  Tumor board wasn't meeting until Monday, so on Friday we decided to go take our kids to California while John was still healthy enough to go show them a good time at Disneyland and other parks.

We spent Friday night to Wednesday night as a family visiting Disneyland, SeaWorld, Legoland, California Adventure and the beach. We both had more fun and became more tired than you can imagine!

On Monday at Legoland we received the call with the results from the tumor board discussion.  They said that they were confident it was cancer, no biopsy needed, start chemo.

The doctor presented a possible chemo regimen to us the week before Disneyland.  When we got back, we found out that the insurance had denied it.  So she gave us a plan B chemo treament.  Yesterday when we went to see her, she had just gotten off the phone with the insurance company and they ended up agreeing to cover Plan A.  Plan A consists of 3 chemos.  (Sounds a lot better than the 5 John had last time!)  One of the chemos is one that John had before - Vincristine administered as an IV.  The other 2 will be new drugs for John-one is a pill, the other can be either IV or pill depending on insurance.  The schedule is 5 days on chemo.  2 weeks off.  Repeat 3 times.  Rescan to make sure the cancer is responding.  If the cancer responds, John will continue treatment for a minimum of 6 cycles and possibly up to 12 cycles.

Chemo started today, the 22nd.

Today all the drugs are IV because it all happened so fast they weren't able to get the one as a pill overnight. This week we will be at Huntsman every day for IV chemo. Next round, if the second pill gets approved, we will only have to come to Huntsman the first day for an IV and the rest of the week John can just take the pills at home. We are hopeful for pills because the side effects should be less aggressive in pill form than they would be in IV form.

We have been told that this chemo regiment shouldn't be as awful as last time.  The neutropenic fevers are not expected this time like they were last time.  And the chemo will either all be oupatient or at home. So we are hopeful that we won't have any or many overnight hospital stays.

Sinus Update

Back in November/December, John started feeling really sick and weird.  Some symptoms were likely from a cold but could have also been related to returning cancer. His most cancer-concerning symptom was his night sweats had returned.  Because of that, he had his scans a month earlier than planned.  The scans came back as being a really bad sinus infection and likely nothing cancer-concerning.

So he went to the ENT who did the original biopsy diagnosing his cancer.  The ENT cleaned out his nose and gave him some sinus infection nose spray confirming that it was a really bad sinus infection. (Which makes us SO grateful that he had done the sinus surgery when he did!) The medication helped a lot!  John went to his follow-up with this ENT this week to follow-up on the sinus infection.  They said it was strep in his sinuses and did a CT scan.  After the CT scan, the doctor recommended another sinus surgery and recommended doing more work than what was done during his last surgery.  Basically clearing out more of his sinuses than just the one part from the last surgery.

Right now, John has two foreign trips on his work calendar.  One of the trips is still not finalized, but the other is that he is finally going to Fiji!  Getting his visa for Fiji was what led to getting his cancer diagnosed so quickly.  His next cancer scans are in March.  So he's hoping to get back from his trips, have his scans and dr. appointments related to that (he will probably meet with his ENT oncologist, sarcoma and radiation doctors), and then do the sinus surgery.  The ENT told John that his reaction to needing a surgery was the most non-reaction the dr had ever seen.  I guess that happens when you've had 5 surgeries in less than a year and a half.

Overall John's health has come a long way!

"I expect nothing, but I hope for everything....believe in God's Goodness"--The 10 Habits of Happy Mothers, Meg Meeker, MD