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.

When the unexpected becomes normal

I'll get to the point, Alex's latest PET scan was not what we were expecting.  We had been so busy dealing with his multiple infections and feeling reassured that his blood tests were looking good, that having a PET scan that wasn't 'clean' came as a bit of surprise.....but not completely because this is our life, after all.

Deja vu is a terrible thing.....words and phrases can trigger memories and emotions and send you back in time.  Sitting in the same exam room, hearing the same phrases, "puzzling", "brown fat", "this isn't making a lot of sense"; same words - different son - same sinking feeling.  Some people are triggered by Trump, I'm triggered by "brown fat".

Alex's PET scan showed some activity in the neck area as well as some strange spots in the upper spine (strange because they are perfectly symmetrical - lymphoma isn't usually symmetrical).  His doctor checks Alex everywhere and can't find any swollen lymph nodes.  He is thinking of ANYTHING that might account for these results. Was he tense that day?  Was he clearing his throat a lot during the scan?  Could it be a reaction to his infection showing up in the scan?   We're grabbing at straws.

There is one lymph node, deep in his neck that is 'lit up'.  Perhaps under a muscle.  So Alex will go in for a biopsy on Monday, February 28th at Sierra Vista.  We've been to Sierra Vista before and Alex is comfortable there; the nurses and radiologists are nice and he did like the Valium they gave him beforehand to calm him (he is his mother's son). 

Some will say, 'don't worry, God's got this'.  I have been on both sides of that statement; I've seen firsthand God's rescuing Alex either with a miraculous intervention or just pure mercy.  I've also been upfront and center when God doesn't rescue you and the pain of that so outweighs the snatches of mercy.  We've had almost thirty years of  'hits', all life-threatening issues with our children.  If I'm perfectly honest, I'm having a hard time trusting God with the outcome of this.  I trusted Him thru Alex's heart transplant.  I trusted Him thru the ups and downs of the years that immediately followed.  I trusted Him through Alex's first bout with cancer.  I trusted Him through the painful surgeries and illnesses that crept up afterward.  I trusted Him when Ian was diagnosed.  I even managed to hang on (by a thread) to trust after Ian died.  But this.....it's simple and heart-wrenching at the same time - I don't trust Him not to shred my heart again.  I believe in Him.  I believe He is in control.  I believe He can protect Alex, I just don't know if he will.  I don't know if I can survive it.....again.  What Eric & I wouldn't give for the normal, dull or mundane.

In the meantime, my son just wants to get on with his life.  He wants to bowl, and ride horses and try flag-football......so I paste on a smile and help him do the things he loves.  I try not to think about the possibilities but I've given up mascara again, it's safer that way.  So I will curl up in a ball, have a good cry then put on my Mama Bear panties again and fight alongside my son.

A season of.....

It has been a season of change, of remembrance, of uncertainty, of frustration, of longing, of questioning, of rejoicing and of new beginnings.

First the rejoicing; my dad remarried in August in my living room (a week after my knee replacement surgery) to a lovely lady, Frieda Finney.  We have known Frieda and her family for over 40 years and were happy that dad found someone who makes him so happy!   He really is ridiculously happy and shares that with us every chance he gets - I love seeing him and Frieda enjoying this new chapter in their lives.  I will admit it was weird watching your almost 80 year old dad get married.  I know I'm in the minority in that I have been able to avoid a blended family for 56 years, so this is new to me but not unpleasant.  Our little family has grown exponentially (Frieda has a large family) and they have all been wonderful.

This new addition(s) to our family also resulted in changes over Christmas; old traditions were substituted for new ones, adjustments to cherished traditions, sharing my dad with a whole new family, missing my mom....it was all part of our changing season.

My hope for the new year was to keep the Hassetts out of the hospital in 2019.  That pipe dream  ended quickly when we found ourselves in the ER on January 2nd with another infection for Alex.  He was admitted and we began the same cycle of IV antibiotics, testing and trying to find answers.  We had learned at the end of 2018 that he was being horribly over-immunosuppressed, leaving him with no natural defenses that enabled him to fight off infections.  Stanford was slowly weaning him off one of his medicines with the hopes of raising his body's natural immune system.  In light of this newest infection, his next appointment at Stanford with the cardiac transplant team was moved up to February 11th.  This coincided with Eric being out of town on business, so Mama Bear was going solo. I have been hugely blessed that Eric has almost always been able to be us for Alex's appointments, especially the important ones like this one, when we'd be discussing a possible change in course for his treatment and changes to medications.  I was nervous; I'd be advocating for Alex alone, hoping to bring the right words and evidence to adequately convey our concerns. This trip brought something home to me and I shared this with Eric after we returned home - his support and presence allows me to be the Mama Bear I have become.  He may feel like he doesn't contribute much when he's there because I do take the lead in medical matters but his very presence is invaluable.  His support allows me to be aggressive when I need to be, he talks me off the ledge when it gets overwhelming, he distracts Alex and keeps things 'light' when it get tense; we are a team and his absence left a huge void.

Ducks at Creekside Inn

The outcome of our meeting at Stanford was everything we could have hoped for.  They agreed that this was a quality of life issue for Alex and we couldn't continue to battle a different infection every 6 weeks.  We discovered that taking him off the one medicine didn't make that much of a difference in his overall immunosuppressent level (getting detailed here - his overall level needs to be between 250-500, Alex started at 75 before weaning him and it only rose to the 120's after he had stopped that medicine).  This only left lowering his main immunosuppressent medicine, a possibility they were originally hesitant to do.  In the end, the doctors agreed that Alex was the exception rather than the rule (not surprising at all; when has he EVER gone by the rules?) and agreed that we needed to start lowering that medication as well. All in all, it was a good trip; good weather, low traffic (other than the drivers of white trucks who don't seem to want to let you merge or change lanes😕) even ducks in the creek at our hotel and a new plan.

First time on horseback

Alex continues to battle the infection that  put him in the hospital back in January with massive doses of antibiotics and the input of some excellent doctors.  We cannot think Drs. Zachrich, Malotte and Holland enough for their continued diligence as we try and get over this hump.  In the midst of all this, Alex has begun a new adventure as part of a program in Solvang for adults with disabilities.  He attends twice a week and is able to explore new activities (like horseback riding, yoga, Tai Chi, etc) and meet new people - it's been a wonderful experience for him so far.  I've also discovered how well-known my son is.  One of the nurses in SLO knew Alex from bowling, then yesterday the clerk at New Frontiers grocery store recognized him from......you guessed it..... bowling!  I have become 'the mom of Alex' in these new encounters and I am delighted!

We only have three doctors appointments next week with one being Alex's PET scan.  These are always nerve-wracking even when you're not expecting the unexpected.  But we also have a renewed sense of hope.