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.
The battle against cancer continues...
Monday, October 14, 2019
Friday, August 30, 2019
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 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.
Saturday, March 23, 2019
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.
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.
Monday, March 18, 2019
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.
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.
Tuesday, March 5, 2019
What a sweet blessing....
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....
Monday, February 25, 2019
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.
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.
Thursday, February 21, 2019
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.
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.
Wednesday, February 13, 2019
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.
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.
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.
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.
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| Ducks at Creekside Inn |
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| First time on horseback |
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.
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