Don't wait till it's too late.....

 We lost a dear man and an excellent pastor this past week, Dr. JT Reed.  He had been diagnosed with renal cell carcinoma about a 1-1/2 ago, a cancer that he knew would be terminal.  JT was a wonderful pastor and hands-down, the best preacher I have ever heard.  He will be sorely missed by all the lives he touched.

I have known JT since I was 15 years old and his family attended the same church as mine.  He was our summer Youth Intern when he was home from California Baptist College and he made a huge impression on me.

I would later meet JT again when he accepted the pastorate at 1st Southern Baptist Church, Lompoc where my husband & I were attending.  He and his wife, Brenda, would see us through some trying times; the diagnosis of my son Alex's heart defects and ultimate heart transplant and the expansion of both of our families over the next several years.

He would eventually move onto accept a new position at a church in Sacramento and we lost touch, with us occasionally visiting his church there over the years.

I contacted him again after Ian died because I knew I could trust his teaching and guidance and he did not disappoint.  He helped in more ways than he can imagine.

When I found out about his diagnosis, we started texting each other.  I felt that I needed to let he and Brenda know the impact they had had on my life, so I sent the following letter to him.  I was a little doubtful if I should send it but I didn't want to wait till after he was gone to share these memories.  It turned out to be a good decision and he was blessed by them.  I have so many great memories of JT, these are just a few.....

Lesson learned - don't wait till someone is gone to let them know how much they mean to you.

My favorite JT Reed (& Brenda) Memories: 

I first met JT before he was JT, when he was still Jeff. He was a summer intern with our Youth Group at Stine Road Baptist church. Being Bakersfield, those summer bible studies often involved a pool (with – gasp – mixed bathing!) but afterward Jeff would lead our Bible study. That’s when I really started to LEARN what God was trying to tell us. One truth that stayed with me was, ‘sin is sin’; God doesn’t categorize the gravity of sin, we do and we often use it to look down on other sinners, like ourselves. I also took away a love for the book of James, that has only solidified these last few decades.

 I remember hearing him preach for the first time in the chapel at Stine Road and how impressed I was with his teaching.

 I remember the first time he brought Brenda to church. I happened to be sitting a couple of pews behind them and to their right so I had a birds-eye view to how much he adored her. I noticed the way he looked at her and would occasionally brush her hair back……he was smitten. 

I remember going on our summer youth choir tour and Brenda went with us as a counselor, JT was in Hawaii on a mission trip of some kind. We all got a chance to know Brenda better and saw her nurturing nature. When Jeff would occasionally call from Hawaii to talk to Brenda, all the girls thought it was soooo romantic. 

 I remember his sermon before his finals one year and right before his wedding to Brenda. His sermon was good but I remember thinking, something was off…..it was a good sermon but it wasn’t a “Jeff” sermon. JT walked off the stage immediately afterwards but returned to the podium right after the invitation was over…..he wanted to talk to us. He apologized for what he thought was not his best sermon; finals were coming up and the wedding was just around the corner so he was a bit distracted. Even though, what he thought wasn’t his best, was still impactful. 

I remember admiring his strength and courage as he preached at the funeral of his sister, Marsha.

 I remember years later, when my husband and I would become a part of his ministry at Lompoc First Southern Baptist Church. I remember when he came in view of a call and in his matter-of-fact Q&A with the congregation, he said one of the things he’d like to do was update the sanctuary because the light fixtures looked like silo missiles. I was beyond thrilled when he was voted to be our pastor and I was not disappointed, his sermons and leadership skills had only gotten better over the years. 

JT was a hand-on pastor, often doing some of the manual labor himself. You can take the boy out of the country but you can’t take the country out of the boy. Our church would often participate in the local Flower Festival in Lompoc. One year, we decided to do a float. My husband, who is an engineer, was working on constructing the cross. He was carefully measuring and working on the structural stability of the cross while it would be moving on this float when suddenly, a hammer came into view out of the corner of his eye. It was JT with his hammer and a nail, saying something to the effect “we just need to nail it here”. His cowboy was showing cuz sometimes, you just need to ‘get ‘er done’. 

 JT was one of the first persons we told that we were expecting our first son Alex. I remember when JT and Brenda unexpectedly found out about Baby #4. Brenda had told me the news while we were working in the nursery and later JT & I spoke on the phone. He said “Stef, I’m going to be a father again” in a kind of bewildered tone…..I told him that’s what happens when you sleep with your wife. 

After he left Lompoc we didn’t have a lot of contact until after my son, Ian, died in 2012. I was struggling; I was in a church whose teachings were slightly different from the ones I knew growing up and it made trusting God in those days of grieving hard to do. So, I turned to one of the few men I knew whose teachings and wisdom I could trust – JT. We had several conversations via email or text; me always asking and JT providing answers I needed. Those months/years of conversations helped me solidify who I believed God to be and allowed me to start back on a journey of faith after the devastating loss of my son. 

So many good, fun, life-changing memories

News from the homefront

Just a quick update on Alex.......he'll be going in for a PET scan on Wednesday (10/16) before his annual checkup with both the cardiology and oncology departments at Stanford.  We're starting the prep for the PET a little early (yes, I go overboard on this 😃 ) wanting the best results possible.  No sugar, carbs, coffee, starches......heavy on the protein and veges; taking it easy, no strenuous physical activity.  We still have the 'brown fat' issue hanging over our heads from his last PET scan, so this mama is a bit anxious.
I've just begun getting my footing again, not seeing God as the bad guy; rehearsing to myself that He loves us, loves my children, that there is a bigger picture at work in taking Ian so early and I keep hoping and asking that we won't be flung over the abyss again.
After we get back from Stanford it will be Ian's birthday.....so we'll do what we normally do (using the word 'normal' is not lost on me).  We'll take flowers out to Ballard and spend the day remembering our boy, who we miss so much.  Ian would have been 27 this year......we can only imagine what he would be doing and what he would have accomplished.  But we follow his friends on Facebook (with their permission) or run into them around town and see them getting married, having jobs and families of  their own and we dream.

Can I be a Mama Bear and a Lioness??

When we last left the Hassett saga, (way back in March) Alex's doctors were still searching for that mysterious spot to biopsy. Most of what has happened since was medical, of course, and a lot of it detailed and complicated.

The doctors never did find anything to biopsy in Alex's neck, which is good news, so we may never know exactly what we were seeing in the PET scan.  Their best guess is 'brown fat'.  This is my least favorite and most distrusted term in the medical community.  They thought Ian had 'brown fat' in his PET scan before his cancer re-emerged and we began the real battle to try and save him; so I think it's pretty obvious why that term only brings me dread.

Our poor oncologist, who probably knows me too well at this point, patiently went over every slide with me as I looked over his shoulder.  "Wait, go back, what's that spot?", "hold on, why are his knuckles lit up?".....my questions and apprehension were endless but he answered every anxious query.  He finally had to reassure me - "Stef, this does not look like cancer to me."  I finally let it go......for now.  😌

Then we started dealing with Alex's ongoing infections.  In addition to discovering Alex was being over-immunosuppressed, testing at Stanford revealed that his B cells (those little guys responsible for creating antibodies to help fight off infection), had been decimated by one of his cancer drugs.  The only way to help his body fight off infections would be very expensive Immunoglobulin infusions (IVIG).  Stanford and his oncologist here both agreed these needed to happen but our insurance saw otherwise.  For the first time in a long time, we found ourselves in a battle with our insurance provider.  Having world renowned specialists telling them this treatment was needed wasn't good enough (thank you CVS Specialty Pharmacy).  In order to get around this, we needed to see another specialist at Stanford in Immunology.  We ended up seeing the Pediatric Specialist because she has the most experience with this type of problem; a petite French woman with a lilting accent who spoke very quickly.  I couldn't understand some of it but it was lovely to listen to.  They ran more tests and confirmed this was the best course of action.  The outcome of those tests revealed that Alex's system had no memory of the vaccines he had had as a child; only the chicken pox that he contracted twice. I had no idea something like that was possible.  So every infection, every virus was a new one to his system.  This was especially worrying as the outbreak of measles has been slowly gaining momentum.   The immunologist wrote into CVS and they denied us again.  Our doctors kept battling and finally in July Alex was able to get his first infusion.  These infusions last 4 hours at our doctors infusion center in SLO and are done every 6 weeks.  We have no idea how long Alex will need to have these.  If his B Cells start producing again, this could be short lived or he could need these the rest of his life.

During this same time CVS decided that Alex needed to change the immunosuppressent he had been put on after his latest cancer diagnosis.  The only problem was, the drug they wanted to change him to he had already tried 17 years ago and he had an adverse reaction to it.  But again, his doctors giving them that information wasn't good enough.  Loma Linda had to go back into their paper records from 17 years ago and find the one piece of paper that documented this adverse reaction and the justification for not putting him back on it.  We were down to the last 7 days of Alex's current medication when the reprieve came from CVS and they agreed to continue covering his current medication.  Can you tell I'm not a fan of CVS at the moment?

As usual, Alex handled all these ups and downs really well.  We joked about seeing as many specialists at Stanford as possible, agreeing to forgo the Ob/Gyn department.  And we are fortunate, we have good insurance that covers these horrendously expense medications and infusions.  Alex went on with his bowling league, inching his way closer to a 200 average.  He worked his shifts at the bowling alley, with only a few minor changes to safeguard him from infections.  And we've gotten into our new routine of visits up to SLO for infusions and periodic check-ups at Stanford.

We have our next big annual check-up at Stanford in October where Alex will meet with his cardiology & oncology teams.  He'll have a repeat PET scan and see where we sit as far as remission goes as well as a dobutamine stress echo.  In other news, I've found a small Southern Baptist church in town that I like.  We stopped going to church as often when Alex was sick and the flu was so bad but it was time to step back in and get our toes wet.  It's small but the people are friendly and the preaching is good and it feels like the right place, at the right time. We're getting into a new flow.

A lovely friend of Ian's shared this with me and I thought I would pass it along here. I debated whether to post it here or on my original blog about Ian, but thought, both of my boys are so intricately interlaced it would be ok to share it here.  Lessons of the lioness, there is hope beyond grief.  

It's from a mom who recently lost her son and her recounting of those first days of grief are all to familiar.  What stuck me most was this sentence from a video of a grieving lion, "She is grieving but her grief transformed her."  Grief is  transforming me, it has changed the course of my life, I will never be the person I was before I lost Ian.  My life is headed in a direction I could have never predicted or imagined but now, 7 years after losing Ian, there are some bright spots ahead.  There are exciting but still uncertain things happening in the Foundation that we run in his memory and the road ahead is ever changing.  I kind of like the idea of being a Mama Bear and a Lioness. 

The sweetest word....

One of the sweetest words in the English language must be 'normal'......our lives have been far from normal so we value that word probably more than most.

Alex's MRI, done to locate any abnormal or enlarged lymph nodes in his neck so they can be biopsied, came back 'perfectly normal'.  So says the radiologist and his oncologist.  We are still waiting for Stanford to review the scans and weigh in but for now.....it's normal.

So what does that mean?  We wait and watch and have another PET scan in a couple of months.  Alex seems to be keeping his latest sinus infection at bay.  His lowered immunosuppressent medicine may be helping in allowing his body to fight the infection...normally.  😊

We carry on with our normal routine - bowling, work, trips to Solvang, lunch with friends, our latest home improvement project, running the Foundation, thankfulness for the days we have together.....maybe we'll even get a family vacation snuck in there somewhere. 

Riding that roller coaster.....

Just a quick update since my last post......We saw Alex's oncologist at his new office.  He still can't palpate any lumps and we have an MRI scheduled for Wednesday, 3/20.  Stanford wants to see if there is ANYTHING to biopsy; they would really like to get some pathology on what popped up in the PET scan.  Stanford mentioned treatment options, should this be a reoccurance of his cancer and at least we have an option called CAR-T.  It's a new treatment (about 1 year old) and involves harvesting his T-cells, altering them somehow, then re-injecting them.  They will start to target a certain marker (C19) on his B-cells that are the cancer-causing agent (don't you just love all this medical information you glean from my blogs??  😷 ).  We're thankful that we at least have a treatment option; at this point with Ian all we had were clinical studies.  Ian had this same marker on his B-cells but CAR-T was still in the trial phase and it wasn't open to patients with his particular type of lymphoma......the science was just 7 years to late for our boy.....

In the meantime, Alex has contracted another sinus infection.  His doctor is starting to talk surgery...not what we are hoping for but he can't keep going in every 6 weeks and getting put back on antibiotics; at some point he will become immune to them.  So, we are seeing his very accommodating ENT today and will talk options.

We got his blood work back from Stanford and his levels continue to be good - reassuring from a cancer standpoint.  The level for his immunosuppressent medicine has also come down, so we are now below the normal level for other transplant patients but in the target area Stanford wanted him to be.

In the meantime, Alex continues to feel well except for an irritated throat and we do the things he
loves to do - bowling, working at the bowling alley, watching bowling on YouTube, flag football practice with the Special Olympics and attending Hidden Wings in Solvang.  He had his first trail ride last week - with photographic proof provided.

Pray for us this week.....for answers to these recurrent infections, for nothing to biopsy in his neck (still scared to ask for this because it seems so out-of-reach) but the courage and stamina to deal with whatever may come our way.

What a sweet blessing....

I came home from Solvang today to a sweet blessing (literally - hot chocolate mixes, KitKat bars, muffins 😁) from an anonymous Sister in Christ.......thank you!  I'm most excited about my Mama Bear mug!  Which will go nicely with my Mama Bear key chain; seriously, I may have to put this on my tombstone.


After last Monday's surprising news about Alex's biopsy-that-didn't-happen cuz you need a lymph node to actually do one, we got a call from Stanford on Wednesday afternoon.  So we're back on the roller coaster ride, but so far, it's a kiddie ride.  They had just reviewed the PET scan and are concerned.  Of course, in the middle of this, our oncologist is changing his practice.  Dr. DiCarlo's last day at his former practice was Tuesday, Stanford calls on Wednesday and they can't reach him because Dr. DiCarlo's former practice will only tell Stanford that he no longer works there.  BUT Stefanie has his personal cell number which she immediately offers to Stanford.  They speak.  Stanford is a little less concerned but feels it would be prudent to try and get a biopsy so they have some pathology to look at and verify this is not cancer. 

We will be seeing Dr. DiCarlo tomorrow (Wednesday) at his new practice in SLO and he will be coordinating with Alex's ENT (whom we love and almost worship) in having an MRI or CT scan done of his neck area to see if it's possible to get a biospy.  Exhale.

So, in response to the last two weeks and in preparation for tomorrow and whatever may come after, I got my hair chopped off today and got a work-over from my massage therapist, Carol.  Carol's motto is "I'll get rid of that knot even if it kills you".

You know what I've realized is probably the most emotionally exhausting of this whole journey, having to pretend that life is normal.  Continuing with normal routines, putting the dread aside when you wake up in the morning and acting like cancer isn't hanging over our heads, trying to act like we don't know the bottom could collapse beneath our feet at any moment.  But we do it because that's what Alex needs; he needs to feel like his life is normal, he needs to do the things he loves and enjoys, he needs to pack as many memorable moments into his day as we possibly can.  We can't sit around and wait for the bottom to drop out.  That's a waste of his life and I won't let that happen.

So anonymous friend, THANK YOU for making today a little brighter.  I think I'll sit down with a muffin and some hot chocolate....

When you get what you were afraid to hope for

Shock, amazement, disbelief, thankfulness, stunned, bewilderment, awe.......those are some of the emotions that follow when you get what you were afraid to hope for or even put a voice to.

We spent the weekend steeling ourselves for the worst, because let's face it, we have a  track record of hearing the worst.  Friends and family rallied around us as we anticipated Alex's biopsy this morning and the possible results.  All future plans were on hiatus.

We arrived at the hospital 2 hours too early - miscommunication between the doctors' office and us.  Things were not going as we expected, always unnerving.  They called Alex back for his ultrasound biopsy and wouldn't let us go with him.....also unnerving.  He slowly came walking back 20  minutes later.  The radiologist couldn't find a lymph node to biopsy; they looked on both sides of his neck and nothing!  Whatever was 'lit up' on that PET scan was gone.  That was the most I secretly hoped for but was afraid to say out loud.  We've learned not to hope for too much but today we got more than we could have hoped for and we are profoundly thankful.

Alex's oncologist will talk to the radiologist to confirm but he says this is good news.  We are still awaiting Stanford's opinion on the scan and will probably have to do another PET scan sooner rather than later but that's ok.  For today, we received more than we were afraid to hope for. 

P.S.  forgoing the mascara was still a good idea, I cried anyway.