Anti-PD1 Infusion number three and nausea drama

Well, I was waiting to have a little more news to put out this update, but as I’m trying to let go of some of my “perfectionist” feelings to have things “complete” and instead just get things done, I’m going to try to just go ahead and post what I have.

Last week we had a little craziness, as Kevin’s been having some nausea that by Wednesday night had increased in frequency and intensity.  This is not a “normal” side effect for his treatment (but seeing as this is a phase one trial, that’s a pretty relative term).  Regardless, after Kevin having nausea and vomiting from 6PM Wednesday night to 6AM Thursday morning, I made the command decision to bring him in to Emory to get checked out.  I pretty much had to drag the guy because he told me there was some important stuff at work he needed to do that morning.  He hadn’t thrown up for a few hours, so he said he was pretty sure he was better.  Then he sat up in bed and threw up.  And I said to him, “…And, I rest my case.  We’re going.”

I am so grateful for my amazing neighborhood that we live in.  If any of ya’ll are looking for a home in Atlanta, I cannot recommend Adair Park enough as an amazing place to live.  It’s truly the people that make the difference.  I texted my neighbor Maiya to see if she could have her adult niece come over and stay with the kids (who were still asleep) until we got back and less than a minute later, at six in the morning, she said that Angela was at the front door.  Angela came in and went back to sleep in the guest bedroom till the kids got up while I spoke with the on call doctor and then we headed in to Emory.

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My amazing neighbor and bestie Maiya and her niece Angela

 We arrived at 7:30, which is when the doctor said that the infusion center opened, and I think he was wrong about that because the place was already packed!  Luckily they brought him in right away to be seen by the triage nurse and by 8:00 Dr. Lawson’s nurse had received my middle of the night emails and was discussing necessary interventions with the infusion center staff.  In another half an hour, Kevin’s blood work was done and he was getting settled into those oh so cushy vinyl lazy boys to get all filled up on fluids and the “good stuff” anti-nausea meds.  I spoke with our Emory team and we decided to wait and see what the UCLA team said as far as this being some sort of adverse (or even potentially good!) indicator of his treatment and by 11:00 we were back home.

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The good stuff

Kevin was feeling gobs better, and seeing as he doesn’t get paid if he’s not at work at this point, he decided to head on in.  I hadn’t slept in over 24 hours, so two of my other neighbors took care of the kids through to naptime so I could get some rest.  I am so grateful that Angela, Dawn, and Erica were there for us that day.  I was able to focus on Kevin and care for him and then take care of myself and get the rest I needed.  And because these were neighbors that my kids see on an almost daily basis, neither Jude nor Evie shed any tears over why their mommy wasn’t there when they woke up, etc.  Having a community of friends within walking distance from my house is such an amazing blessing and experience that I’ve never really experienced before moving into this neighborhood.  It is amazing, and incredibly useful as well!

On Friday as I was getting ready for our flight to LA for Kevin’s next infusion, I heard from Liz, the director of Kevin’s trial at UCLA.  She said she’d finally spoken with Dr. Ribas and he wanted Kevin to get a brain MRI as soon as possible, before flying to LA if possible.  In that moment my heart stopped.  She didn’t have to say it, I knew what that meant.  I remember sitting in the van, parked in the driveway, thinking that if it wall went downhill from here, that this was the moment I would look back and remember as the start of the next chapter.  I took a deep breath, closed my eyes, and tried to figure out what I should be doing.  What was going to happen next?  What do I worry about?  What do I find peace in?  I felt lost and frenzied and frozen all at the same time.  Finally, somehow, I started to put the pieces together of what I needed to be doing.  First I contacted Emory and tried to see if they could even get an MRI scheduled for today.  I realized it was unlikely we’d be able to make our flight, so then I got on the phone with Southwest and very sweetly finessed a reservations agent to see if we could get our flights rescheduled to the next day.  Oh Karen, bless her!  She not only got our flight rescheduled, but got us on a non-stop and didn’t charge my friend’s account any extra miles even though the change was totally last minute.  Southwest, you are amazing!

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Finally on our way… Southwest rocks!

Only then did I call my poor husband to tell him that his entire day’s schedule was changing.  I kept working out details and making changed plans with the folks we were staying with, visiting, etc. in LA.  And then of course, wouldn’t you know it by 4:00 our Emory team called me and said they’d tried everything and everywhere but they just weren’t going to be able to get Kevin in for an MRI that day.  THEN, I had to call Liz at UCLA back, tell her that, and see if she could get one scheduled at UCLA for Monday.  THEN, I was ready to just pass out from exhaustion.  It’s after days like these that I really wished I drank.  Or frankly, it’s probably a good thing I don’t drink, because I’d become an alcoholic!

We did our best to put our worries out of our mind for the weekend and focus on enjoying time with family.  We visited Kevin’s mom’s cousin’s family down in San Diego and had just the best time catching up, snuggling with new babies and just spending quality time together.  The rest of the trip was spent at Kevin’s cousin Claudia’s house, which is just down the street from UCLA (how convenient!)

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Fun girls’ night with Kevin’s mom’s cousin’s, sons’ wives.  So that makes us… I have no idea, except family!

Tuesday was UCLA day and wouldn’t you know it, they were totally behind with his bloodwork which pushed everything else behind.  Again I quickly realized we were NOT going to make our 3:30 flight, which was Southwest’s last flight of the day, so MORE calling and finagling and sweet talking to get the flight changed.  And just when I’d gotten it worked out and approved by a supervisor, my stupid phone hung up on sweet Mary!  Noooooo!!!!!  I seriously need a new phone, this one has just been through one too many bouts with a toddler and randomly hangs up on people, has wild volume swings up and down and is just a downright bipolar phone.  And in that moment it felt like my phone was kicking me in the face!  Argh!!!  I tried again and this time just barely got someone to be willing to switch the flight for us without charging a boatload of points.  All told I’d been on the phone with Southwest for over an hour trying to get this all done because of some stupid labs being delayed!

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 For the love of Pete, how much bloodwork do we need?!

Kevin met with Dr. Ribas before his infusion and we discussed the nausea that he’d had in the previous few weeks, culminating in his hospital visit last week.  Dr. Ribas did NOT think that the nausea felt consistent with a brain metastasis (he would have been much sicker and not have had times of feeling well) but it was still a strange side effect.  When we discussed the gassiness that seems to lead to it, he started to think that Kevin might have cancer in his gut somewhere.  This is an area that would not show up on a scan very well because of how much “stuff” we have down there in the ole GI tract.  This would explain SO much from the last six months.  Kevin has really had a lot of nausea that has dogged him through interferon, IL-2, and now Anti-PD1.  And it was never “normal” nausea and “normal” meds usually didn’t help very much.  Also, the way the Anti-PD1 treatment works, it could effectively “piss off” the areas of his body that have cancer in them, like they could “flare up” when they’re being attacked, you know?  So that makes perfect sense, right?  Here, maybe this will help.

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Dr. Ribas’ notes “explaining” how Anti-PD1 treatment works.

So here we are, back at Emory on a Thursday evening.  Kevin is finally having the brain MRI and we ask you to join us in prayers for NO brain metastasis.  But he is also having an X-ray of his abdomen and I don’t know what I really pray will come of that.  Do we want them to find cancer there which would explain a lot of troubling and unexplained symptoms?  In some ways that would be comforting, but still that would mean he has more cancer than we knew he had.  More cancer is definitely worse than less cancer.  I don’t know if it would change things with treatment or what.  So I guess we just ask that you pray the God would make things work out the way they should and that things are clear to our doctors so they have wisdom in which way to proceed.

I will post as soon as we hear the results of these scans as well as the biopsy that Kevin had done on Tuesday.  We are hoping that the biopsy will show that there are a higher number of fighter cells in his tumor tissue than were present at the biopsy he had before commencing treatment.  This would be a good indicator that the treatment is being effective.

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Kevin’s biopsy…That’s no baby on that screen

Kevin will have one more infusion before scans are done to see if there has been any progress.  Thank you again dear friends and family for all of your thoughts, prayers, support, and encouragement.  Even if I don’t always respond, I read every comment, email, facebook post, and text message.  They warm my heart and remind me that we have not been forgotten.  We are SO incredibly grateful for each and every one of you.  Thank you!




Hello friends, I’ve missed you!

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Well hello there!

Hello dear friends.  Oh I’ve missed you all.  I’ve missed sharing here on this blog, and there really is so much to share!  I don’t even know where to start, so I guess I’ll just dig in with whatever I can think of.

First of all, where have we been?  Well, most of you know that we jumped on a tiny little plane and headed up to Washington D.C. to look into some trials at the NIH.  We were offered a trial there of a treatment called TIL therapy, and we are ready to jump right over to it in the event that Kevin’s current treatment does not work.

Then we hopped a big plane out to LA where we met back up with the kids and then looked into some trials at UCLA.  Kevin enrolled in a stage 1 part D trial of a new treatment called Anti-PD1.  He had his first infusion that Thursday and then flew back to Atlanta Sunday night so he could get back to work.  I stayed an extra week with the kids to visit with friends and family and to attend a funeral.

The funeral was for Kevin’s cousin’s son who died tragically the same day as Kevin received his first treatment.  We were stunned by the parallels… Damien was 38 and Kevin is 36.  Damien left behind a wife and a 2 year old and a 4 year old.  I never knew Damien and have only just met his wife Jenny, but my heart continues to weep over this loss.  It sounds like Damien was an amazing guy, one of the “good ones” much like Kevin, and in my selfishness, I often wonder why it can’t just be bad people who die, why do the good ones have to be taken from us?

At the end of that week I started to get sick, just in time for me to fly cross country by myself with a 21 month old and a 3 year old.  Evie started getting sick on the plane too, and by the end of the flight, I think both of us were in full blown flu mode.  I am SO sorry to everyone on that flight.  I promise we washed our hands a million times and wiped every surface of our area down with purell.  I may write more about travelling with two young ones by myself, but to sum up, I do not recommend it.  It is literally impossible for one adult to get two children, their carseats, and bags onto a plane unassisted.

This trip though, I was dropping the “cancer card” left and right, hoping folks would feel pity on us and just be nice and help out, which they did.  On the flight to LA back in July, I had several folks, including the flight attendant who were just downright rude to me, and emotionally it was just too hard to handle.  By the end of that flight both kids had had poop-splosions and were down to nothing but diapers and shirts.  In fact Evie was wearing a shirt from a seat mate.  We were a sight to see.  Anyway, this flight was only marginally better.

I got home to Atlanta and had to jump right back into being full time mommy, keeper of the home and now tending to my sick self and two sick kids.  The kids took turns being up through the night with croup cough, so I would sleep in the guest room with one baby one night and then the other the next.  It was awesome, let me tell ya.  During that week I would have alternating bursts of energy and then extreme exhaustion where I could barely keep my eyes open.  We watched a lot of TV and the house got messier and messier.

Sometime towards the end of last week I started to feel myself slipping downward, and warning bells started going off.  I knew we were in the midst of a bunch of transitions, to say nothing of being sick, getting back from traveling, and coming off the adrenaline of being “in battle” for nearly a year straight.  We are hopefully entering a season of relative peace and I want to take advantage of every moment of it.  But at the same time, that change seems to have been something my body and mind were having trouble processing.  Top it off with a three hour time change and the sudden darkness of fall mornings and my little slipping downward started to spiral.  This is a hard thing for me to write about, even harder than writing about ADHD.  But those who know me well already know much about these struggles with depression for me.  And those who don’t, well, I feel the need to share here in an effort to be honest.  I also am sharing in case it will affirm others, especially you mommies out there.

I don’t know if I have clinical depression.  I’ve not been formally diagnosed with it.  I definitely do have ADHD, and depression is often an accompanying factor.  For me I really do think that my depression rears its ugly head when I am feeling overwhelmed or behind.  Also, I know that there are very real physiological factors that affect my mental state.  I think this may be the first year though that I have tied it to the changing of the seasons.  Perhaps it was because the time change from traveling plus the seasonal changes that felt so drastic when stacked up together.  And then of course we have daylight savings time coming up.  Oh joy.

Anyway, enough about all of that.  If I try to be “complete” in this update, I will never, I repeat never get it posted.  In an effort to give a glimpse into what’s been going on this past month, I’ll share a few pictures.

Why haven’t I been posting much?  Before we got sick, Kevin and I were much too busy doing this

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A whole lot of this

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And plenty of this

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We’ve also been hanging out with lot’s of family doing things like this

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And sneaking out of bedtime for extra snuggles and cuddles

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Reconnecting with Nana and Papa

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Chilling out and relaxing

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And of course a visit to LA wouldn’t be complete without a trip to see Aunt Kay, Kevin’s mom’s sister

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There’s also been plenty of just playing and hanging out

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And connecting with friends, new and old

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Evie especialy has been over the moon excited to have us all back together!

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Before leaving, we made sure to have some special time with Grammy and Grandpa.  The kids sure do miss them!

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Okay, this post is neither cohesive nor complete, but it will have to do because Jude’s nightlight just turned yellow and he has informed me through the monitor that it is time to get up.  Love to you all and I will try to slowly but surely get caught up.  There is so much I want to share!  Love you all, please keep praying for us as Kevin IS having some side effects and it’s been tough, we fly to LA this weekend for his next treatment and a biopsy, and I’m still not caught up around here!  

XOXO, Rachel