A small thanksgiving

It's holiday time....it's another medical issue with Alex....and it's our 6th holiday season without Ian and the first without my mom.

I spent the morning with Alex in a surgeon's office hoping he could alleviate Alex's pain from this latest abscess before Thanksgiving (his third skin infection this year).  The last few days since Alex alerted us to this newest infection have thrown me back emotionally; caretaker 24/7, the realization that this will never end, that it will always be one more battle, one more worry, more sleeplessness nights, I sleep with the door open so he can get me at a  moment's notice.....but I'm his mom, I can't quit.

I keep remembering waking up to texts from Ian.  Some said, "Momma, I need you." but one morning it simply said, "help".  I dashed into his room to see what the crisis of the day was.  It's funny how one word can crush your spirit and the fear of seeing it again can throw you into a panic. But this is my life.

I'm thankful that we were able to get into see the surgeon today.  He's had this same thing before, in February, so we thought we knew what to expect but that didn't stop a quietness from coming over Alex the last couple of days.....he knew it would be painful but he knew it was the only way to fix the problem so my amazing son faced it bravely and marched ahead.  I remember a particular 19 year old facing life the same way.

The one problem with detecting an abscess early is that it's a little harder to find it and open it.  The surgeon wasn't a 100% sure he could do that today but the alternative was to wait and let it get worse and possibly be in the ER over the holiday so we opted for hope.  He was able to find the right spot, much to everyone's relief in the room and the abscess was bigger than we all thought just buried deeper.....and it was much more painful even with numbing it.  I have two of the bravest sons - both in their own way.

So we begin the healing process and Alex is feeling some relief.  Since this is his third skin infection we questioned all his doctors about any correlation between this and his new immunosuppressent medicine.  All were in agreement that his immunosuppressent is causing these recurring infections.  We've talked with Stanford and will be discussing how we can prevent these in the future.  We already know through a new assay test performed by Stanford that Alex is being highly over-suppressed so they are starting to lower his medicine dosage.  We suspect that by the end of this, he will be on a extremely low dosage (he's already on the lowest dose that Loma Linda felt comfortable with).  This also helped to confirm that our move to Stanford was the right one for Alex at this time.  Once again, we may be entering unknown waters but that's been Alex's life - facing horrendous obstacles and surprising the medical community and sometimes providing a new way to do things.

We'll have a quiet Thanksgiving with just immediate family; no fancy table decorations, no photo worth side dishes, just food and family.  They'll be two plates missing from our table this year, Ian and my mom but we have the added blessing of a new face at our table, my new stepmom Frieda and what a blessing she has already proven to be to our little family.

I hope your Thanksgiving table will be full of blessings, love and shared memories - treat each other kindly, nobody knows what tomorrow holds.

No....but

Just a quick update for those following Alex's story.....it turns out they couldn't find that 'needle in a haystack' in his blood, which happens in 1/3 of the patients, so Alex won't be a part of the study looking for cellular changes in lymphoma.  Needless to say, I was disappointed.  I'm not sure folks understand what it's like to wonder if every symptom could be a return of his cancer.  PTLD (post-transplant Lymphoproliferative disorder) is so sneaky....it can present as something as ordinary as constipation. Then after you've tested for everything else, it's cancer. That's what we live with everyday; you try your best to push it as far back in your mind as you can and live your life.  It's a precarious life.  It's also a thankful life, no moment is taken for granted; every hug, every kind word, every kiss on the head matters.

Yesterdays answer was No......but.  Stanford would like us to meet with their transplant cardiology team about a study they are doing to try and individualize immunosuppression.  Right now, almost everybody has a same window of suppression.  You take your medicine and they measure the level in your blood, most people are at 3-5 (as an example).  This study will look at ways to individualize those levels based on a person's personal history and how those levels relate to secondary diseases like cancer and renal failure.  Alex has spent his entire life on the cutting edge of medicine and we have always agreed to participate in studies that not only help him, but others following us (as long as it hasn't been harmful to Alex) so this is nothing new to us. This is the path we've been given to walk.  God's purpose for Alex continues.

Alex will be followed by Stanford every 3 months with his next PET scan in mid-September.  Our hope and prayer for that is CR (Complete Recovery). Right now, the doctors are happy with his progress, his blood levels are good and they remain optimistic that the PET will be clear.

On a lighter note, I recently helped my dad clear out my mom's closet and we came across all my mom's report cards from 2nd grade thru 12th.  The fact that my grandma saved all these (mom was the 10th of 11 children) amazed the family.  But one particular year was quite reflective of my mom.  From her 7th grade teacher:
Sept - "Barbara sometimes talks a little but she is one of my very few good students.  She is capable and dependable."
Jan. 29 - "No trouble with talking this period.  Complains about assignments as though work is an awful thing but I don't think she really means it that way.  Does nice work and has a pleasant personality."
April 2 - "Barbara is not doing too badly so far as failing is concerned but she isn't working up to capacity.  She is talented if she would dig in and put out her best."
I can just see this teacher, perhaps in her first year of teacher, wanting to write something nice about each of her students.  Mom obviously came out of her shell after the first quarter and voiced her opinion (no surprise there).  But as the year wears on, the teacher slowly starts to slump over her desk.....

A couple of things.....it’ll be a busy week for the Hassetts. We’re at Stanford today awaiting our appointment with Dr. Alizedah tomorrow. He is the leading specialist on PTLD (Post-Transplant Lymphoproliferative Disorder) Alex’s particular brand of lymphoma. We will find out if Alex qualifies to participate in a study which is trying to detect changes in lymphoma on a cellular level, before it becomes detectable on scans. Because of the incedious nature of how PTLD reveals itself, this would obviously alleviate some stress on our part as far as having to figure out if some seemingly innocent symptom is in fact, cancer. I’m hoping Alex qualifies. This could change a number of things for us; things change, sometimes for the better but sometimes just because they do.
We had a really easy drive up (much less stressful than our drive to LA) and we even stopped by the Winchester Mystery House for their new ‘Explore More’ tour. So all in all, an enjoyable trip. We have a great little place to stay that is quiet & serene and on this visit we discovered a wonderful Chinese restaurant - it was a good day. We got a call before dinner from Stanford, the doctor had reviewed Alex’s blood work from 2 weeks ago & wants new labs drawn. I don’t think he knows what that does to my imagination.....what does this mean?  Was there something wrong with his levels?  Did he see something our oncologist back home didn’t see? Is the cancer back?  I’m trying not to go there. Perhaps he just wants additional tests that weren’t run 2 weeks ago.

I’m sitting on our balcony, enjoying the view and a conversation begins:

Me: what does this mean God?  What are you doing?
God: do you trust me?
Me: you scare me. You’ve already taken Ian. I know that trusting you can lead to pain.....but yes, I trust you.
A few years ago, maybe even more recently, I wouldn’t have been able to say those words. But we’ve made some changes recently that have put us on a path toward healing.  As hard as it was, we’ve left our former church home where healing & hope was hard to find. As much as we loved the people, and love them still, the theology was killing our souls. We could no longer go to a place that left us more depressed than when we walked in. We needed to pursue joy and we’ve started that journey.
I said we would be busy this week.......after we get back from Stanford I will finally have my knee replacement surgery. This is long overdue and I’m hoping that fixing my knee will allow me to do the things I want & need to do......like hiking, canoeing, working on the back yard, running errands for the Foundation and that second tour of the Winchester Mystery House!
My fortune cookie tonight at dinner said “you will be called upon to celebrate good news”....I’ll take whatever I can get.

Good news and multiple blessings....

We've had some good news the last few weeks along with those small, incremental blessings that seem to come along just when you need them.

Alex had his annual eye exam last week.  The doctor wanted to see me after the exam was finished and my mind immediately went to 'what now' mode.  But the optometrist was very excited, Alex's eyesight (with his glasses) had improved to 20/20.  Alex has always had really bad eyes, 20/300+ and even with eyeglasses the best he could see was 20/40 in one eye and maybe 20/25 in the other but today he's seeing 20/20 in both eyes.  The doctor wanted to know if anything had changed and I told him about the cancer and chemo, etc.  The only thing that could account for this rather drastic change is one of his meds.  Apparently, there's a local 'round table' for optometrists and our doctor was very excited that he would now have something to share with the other doctors.  There is a presidence for chemo drugs being linked to other positive side effects so he will find out if any of the other doctors have heard or read of a connection to the ones Alex was taking.

The second bit of good news about Alex is his blood levels are starting to look normal again.  His platelet counts, which have been low since we discovered the cancer took a big jump this last month along with his other red cell counts. All are going back to pre-cancer levels.

Now, those blessings (aka gifts) that give us hope.  Ian's librarian from his elementary school found some pictures of Ian from the 5th grade when he was painting the reading teepee that she keeps in the school library.  He was so happy, slightly plump and painting away....I'd never seen these before; now they are treasurers.

Through our nephew, Troy, who is an amazing ceramist (and currently teaching in the South of France - slight bragging rights since we're related) has the opportunity to dedicate a brick in a new building on the campus of Archie Bray Foundation for Ceramic Arts in Montana.  This is a mecca for ceramic artists and when they approached Troy about adding a brick in honor or memory of someone, he thought of Ian.  So Ian's name will be inscribed on a brick for their new building.....how cool is that?  He never made it to college to study art, but he made it to Archie Bray.

Lastly, yesterday, June 30th, we held our 2nd Art Show for student artists from the Vocational Training Center.  It was a huge success, 19 pieces of their work were sold last night (19!), we had around 100 people come by to support them (including some local dignitaries).  What most people didn't know was yesterday was also the day, 6 years ago, that we held Ian's Memorial service.  So on this day, that we celebrated the short life that he lived, we also celebrated the legacy he left behind....by encouraging and supporting these local artists.  I like to think that Ian would tell us we're doing a good job and remembering him just the way he would have wanted. 

Trying to Catch Up

It's been awhile but I'll try to update you on what's happened since my mom died.

We had an appointment at the Stanford Cancer Care center and met with their head lymphoma doctor, Dr. Ash.  He and the Fellow working with him met with us for 2 hours, discussing Alex's case history and how to proceed from here.  We were uber impressed with these doctors.  They had done their homework; they had looked over Alex's previous medical records (can't imagine how long that must have taken) and even knew about Ian.  They are conducting a study to try and detect lymphoma at a cellular level via blood tests before the cancer shows up on any scans.  They will be running a specialized blood test on Alex to see if they can find this 'needle in a haystack' in his blood.  If they do, then Alex will be included in this study. They also believe that his current battle with lymphoma may have a different morphology than his first battle 17 years ago and will be looking over bone marrow slides from almost 20 years ago (if they can locate them) - they have quite a task ahead of them.  We will return to Stanford in August for more information and to see if he's a candidate for this study.  In the meantime, Alex will begin monthly infusions of Rituxin (a monoclonal antibody) to help kill any microscopic traces of lymphoma that might be left in his body.

In between, our work with the Foundation continued....the Art Council Showcase judging, Artessey field trips for the high schools, accepting applications for our annual award and the private art tour at our home of Ian's work.

We had mom's memorial service on Friday, April 27th in the Chapel at Grace Baptist church.  This was to help accommodate my brother and our daughter, Amy, coming down from Oregon.  I've included in here what I said at mom's service:

If any of you have wondered what my mom looked like at 56, this is pretty much it, except for the grey hair but that’s because mom was still dying hers at this point in her life.

In fact, I remember once, mom & I were clothes shopping together and the store we were at had rather low doors in the dressing area, so you could see the tops of ladies’ heads.  I wandered back there to see how she was doing and I couldn’t find her. I didn’t recognize any of those heads.  Finally, I called out her name and she answered, directing me to the stall she was in…..I realized I couldn’t find her because I had forgotten what color she was dying her hair. Mom had wisely decided to go lighter as she matured.

Besides the physical resemblance to my mom, which include her stout German legs and flaring nostrils I also inherited her strong will, stubbornness and lack of shyness in expressing her thoughts and opinions. That could lead to some conflicts between the two of us; I blame mom’s inability to let go of her control issues and make allowances for MY control issues.  But we both came by these traits honestly as we come from a long line of determined, vocal women.  There is a long standing joke in our family that the women are getting into heaven, because God promises that to those who believe and we ARE holding Him to that promise.  But God, in His infinite wisdom, will be putting all of us in the far corner of heaven so we don’t disturb anybody else.

My mom was very vocal about her faith and spoke with God on a daily basis and sometimes gave Him an earful if she didn’t like what He was doing at the time.  She was also very vocal about the love she had for her family and for my dad who was her lifelong partner.  They were a true example of a loving and committed marriage.  But especially her love for her grandchildren.  She spent as much time with Alex, Amy and Ian has we would allow and I had to remind her on a few occasions that Eric & I actually had legal custody of the kids and she had to share them.  I realized from the very beginning, how fortunate I was to have parents who were so close and who have played such a vital part in my kids’ lives.  For many years my mom & dad would take one of my kids out to dinner each week, spending some precious one-on-one time with them.  My mom knew this little tradition wouldn’t last long, especially as they got older and other things would become more important than spending time for grandma & grandpa.  But what delighted us was how long it did last, even into their teens, they enjoyed that time spent with their grandparents talking over dinner. My mom was limited in what she could do with the kids physically but she excelled at engaging them in conversation.

We did not wake up on the morning of Good Friday expecting that we would be saying good-bye to mom but what a perfect day for God to call her home.  Eric, Alex and I were in Ballard leaving flowers on Ian’s grave for Easter when my dad called to say mom had become very ill and he was calling 911.  At the time, we didn’t know the severity of the situation but I told dad I would head straight home and to the ER.  As we prepared to leave, I was looking at Ian’s headstone and the flowers we had left and suddenly could hear Ian reassuring me, simply saying “It's ok mom, I got her.” I didn’t quite understand what he meant by “I got her” but I left the cemetery at peace knowing my mom was being looked after.  Later I would find out that mom never regained consciousness and I like to believe that it was at that moment in the cemetery that God called her home and the voice I heard was literal – she was home and in the presence of the God she loved and Ian was there to help greet her.

We are thankful that mom is no longer in pain, that she is no longer constrained by a body that was failing, that she lived to see Alex go into remission, that she went quickly and peacefully, that she was able to celebrate the best Easter she’s every had with her loved ones around her

So mom, enjoy your time with the savior you have loved most of your life, don’t give God too hard a time about the difficulties down here and just remember that you have to share Ian when I get there.

Love you mom.

Just a few days after mom's service we took my dad up with us for a vacation in Oregon - he hadn't been on a long trip in about 15 years.  In fact, before we left, he called me a little perplexed...he hadn't packed for more than one day in  years.  He'd never been more than one night away from my mom in the last 15 years and wanted to make sure he had packed enough for the trip.  We saw some beautiful scenery, visited with my brother Adam and his wife Judith, spent time with Amy & Bradford, had the chance to reunite with a friend that I haven't seen in 22 years along with some of her family, spent a couple of nights in Coos Bay before heading home (a total of 2100 miles) - we decided next time we're flying.  While in Coos Bay, we had a reminder that Ian was still with us, in whatever sense is possible.  We were walking through some beautiful gardens at the ShoreAcres State Park and rounded a corner along the path when we were greeted by a lone red robin just sitting in the middle of a small grassy area like he was waiting for us.  He stayed there for the longest time, letting us talk to him and take pictures.  God is gracious enough to send us this reminder just when we least expect it but need it the most.  

A couple of lessons learned from our trip - Airbnb’s are great!  We stayed at a marvelous house on the bay - the perfect place for our family to gather.  Oregon takes really good care of their bridges.  The river's in Oregon are so serene and calming - also had some Elk sightings while we were there.  Coos Bay is not for us - most of the housing seemed to be comprised of old, dilapidated homes, RV's or single wide mobile homes.....but the scenery, oh my gosh! California's roads are horrible - especially around Sacramento.  

A real treat on the way home was stopping in Carmichael to visit with old friends (literally - in age and duration) Wayne and Nancy.  My dad couldn't remember the last time he had seen them. It's funny how some people have such an impact on your life...I can't remember a time before Wayne & Nancy; they have just always been a part of my life.  It was so good to see them and we all picked up where we left off.

I didn't want to come back....I didn't want to start 'real life' again, to deal with cancer and appointments and waiting but I did because that's what I'm called to do right now and for my son, I will do it.  

Alex had his first infusion this last week and it went very smoothly.  Now we start the watching and waiting; my favorite past-time.  We've established care with a new cardiologist and am hoping for the best.  In the meantime, Alex is truly enjoying his work at Rancho Bowl and they like him, he'll continue bowling with his grandpa over the summer, we're in the busy season with the Foundation right now - giving away money and getting ready for our art show for the VTC artists this summer.....life goes on.  

We had our first Mother's Day without mom, which was also my parent’s anniversary and our anniversary (57 and 29 years, respectively).  I realized our anniversary card this year was the first with only my dad's signature - that hit a little harder than I expected.  It also marked the 31st year since Eric's dad passed - all told, a full emotional day.    We've kind of started a new tradition, because that's what you do when you lose someone, you make adjustments.....the usual Sunday morning breakfast at my parent's house has shifted to my house.  We all have our parts to play, I do bacon and hash browns, my brother Mike does the biscuits (mom's way), dad will sometimes do the fried eggs and Alex puts the glasses in the freezer cuz OJ is just better with a slight crunch to it.  On pancake Sunday, Eric is in charge using Ian's recipe.   

The pastor on Sunday spoke about doubt and said something that hit home...."If doubt leads to questions and questions lead to answers and the answers are accepted, then doubt has done good work. When you doubt, do not stop there, but let your doubt deepen your faith as you continue to sincerely search for answers."

I've doubted...I doubted God's love for me, for my family; I've doubted His plan; I've doubted His goodness; I've doubted the reason for all that's happened to our family but those have led to deep-rooted and honest questions and I'm beginning to see answers.....that's a good thing.....that's progress.  Those doubts and questions have forced me to re-examine who I believe God is and how He works in our lives and have helped solidify my Baptist roots in God's love for us, His sacrifice for us and His desire above all else, to have us choose to follow and love Him.  Even when we make poor choices...His loving arms are always ready to welcome us home and into his arms.

What a week....

I'm not quite sure what to say about this week....it's been a pretty broad range of highs and lows.  I'm at a loss to remember all the things that happened this week because I KNOW it was full so I go and check the calendar on my phone and it's empty.....so much in five short days but no record of it.

Monday was great!  We had the unexpected surprise of Alex getting his PICC line out, which went really smoothly (but I videoed it on my phone just in case).  Alex had his bowling arm back - it's a banner day and one we've been waiting 5 months for.  But he has this annoying little rash on his neck and he has a weird bruise/sore on his ankle that just 'popped' up, so there's that to be concerned about and try to figure out.

On Tuesday we had an appointment with our Primary doctor's partner because both our Primary doctor and Alex's oncologist are on vacation this week (this was not coordinated with me, so I'm at loose ends trying to find someone I trust to take a look at Alex).  This doctor says one of my most dreaded phrases, "Let's just watch it"😳  Like I never 'watch' the stuff Alex has that comes up - I watch it like a hawk.

Wednesday Alex got to bowl for the first time in 5 months.  He was so happy and he bowled so well, 154 & 184; he hasn't lost his touch.  It also looks like he has a job at Rancho Bowl - his dream job!

Today we were going to put new flowers on Ian's grave for Easter.  We were at Ballard and I got a call.  Before I even saw who it was, something told me it was my dad.  My mom had become violently ill and he had called 911. We weren't sure what was going on but thought it might be one of her medications.  My mom has been in ill health for a very long time and was mostly confined to her home with arthritis and other ailments.  After my dad hung up with a promise from me that I would meet him at the hospital I had this weird feeling......I was looking at Ian's headstone and I just felt him letting me know that he knew and had his eye on his grandma.  So I silently said 'ok, Ian.....you got this".  On the way home we would find out that my mom may have had a stroke.  Once I arrived at the ER I found out that my mom wouldn't make it (it's usually not a good thing when your dad is waiting for you outside the hospital instead of being inside with his wife of almost 57 years).

My mom had suffered a massive stroke and she would not recover so the decision was made not to perform any heroic efforts and to keep her comfortable.  We knew this is what she would want.  The doctors told us that they agreed with our decision but we knew it was the only one to make; my mom would be so mad if she was confined to a rest-home or unable to function at all.  She would hate for people she didn't know to be taking care of her or to be more of a burden to me dad.  We were more afraid of her being mad, even if she couldn't talk she still had the power of the 'evil eye'.  An hour later she was gone.  She would have wanted to go quickly.  We prayed over her, talked to her, told her we love her, thanked her for being such a good grandma to Alex, Amy & Ian.  We wanted to play some hymns for her as we waited so I clicked on Pandora.  I kept trying to find hymns but the only song that would come up was "Good, Good Father."  I think that was a good choice as she went to be with the Savior she has loved most of her life.

I like to think that those we have loved in this life are there to greet us when we arrive in heaven and I can imagine mom gently pushing her siblings aside as she excitedly looks for Ian.  What a glorious Easter she will have this year with her parents, brothers and sisters and Ian.  She loved that boy. 

It's been a heck of a week.

Can you say R.E.M.I.S.S.I.O.N?

I woke up to a reminder on Facebook - "Blessing #17, an unsolicited hug" posted originally on March 19, 2011.  I know exactly what hug that was; where I was, what Ian said and the feel of his arms going around me.  What a great way to start today with a reminder of unsolicited love from Ian.

We got final results today and Alex is cancer-free!  Alex and I were both quietly happy at the news as we met with his oncologist, Dr. DiCarlo.  Alex is usually quiet in his responses; he thinks, he ponders then he questions. So I will wait and see what questions he comes up with in the days ahead.   He's also focused on the 'now'.  When I asked him if he was happy about the news, his response was "I'm still hungry."  That's my boy!  

For me, it's because I've been in this place before; thinking we had beat the cancer with Ian only to have it come back 'with nasty aggression' (Ian's words).  So, I will wait and watch and be quietly neurotic.  I also know that  now begins the dance of balancing his immunosupression and keeping the cancer at bay.

We are seeking opinions from Stanford and Loma Linda on how we should proceed.  There is talk of during a couple of rounds of Rituxan (a monoclonal antibody) to make sure we killed all the cellular traces of cancer that a scan can't pick up.  There's the question of whether it would be beneficial or may be more harmful down the road.  If we do this, then we stop his immunosuppression medication again...it's a highly choreographed, complex dance.... this life with Alex,  but worth every step.

I had something noteworthy happen lately....I got a Friend Request from a stranger on Facebook.  The request wasn't unusual, it happens and if I don't know them I usually ignore them.  But I saw that we had some mutual friends, one of them being my friend Melissa Haley who died much too soon a few years ago.  I thought, if she was a friend of Melissa's she can't be all bad.  I found out very quickly how much my new friend and I have in common.  She lost her son 14 months ago at the age of 22.  He was born with congenital heart problems which led to lung problems and needed a double lung and heart transplant but was unable to get one.  She has a Bakersfield connection.  We had both been previously divorced.  She's a Christian.  God speaks to her through songs as well.  I knew we needed to meet and talk, so we did and it was lovely.  She was needing to meet another mom who had lost a son and had walked where she is now.  I needed to share with her what I have learned and experienced so far on this journey and we both needed to talk about our boys.  God used our ties with Melissa to bring us together....I think Melissa would be smiling at that.

I can't see the line anymore.....

Alex's medical care has always been complicated.  I literally spent the entire morning on the phone with doctors offices, testing facilities and insurance companies.  Finding the right balance between keeping the cancer at bay and keeping him immunosuppressed so he doesn't reject his heart is precarious and we feel the weight of those decisions heavily.  But now we are walking such a thin line, I can't see it anymore. 

We have Alex's history of being off his heart meds for 7 weeks when he first dealt with cancer 18 years ago and never rejecting which gives us some reassurances but we can't let that make us complacent. He's been off chemo meds since January and off his heart meds since November so we're at the 7 week mark now.  His transplant team is understandably concerned but we also have to make sure he's actually in remission before we start to suppress his immune system again.  This week, for the first time in 28 years, Alex had no medication of any kind to take; no heart medicine or antibiotics or diuretics or anti-virals or blood pressure medicine.....he was at a loss.  It is such a part of his normal routine he had to check with me several times to make sure he didn't have anything to take.

Some decisions were made today to try and safeguard him.  He'll have a PET scan on Thursday to check for any signs of cancer anywhere.  I'm particularly concerned about the lump in his neck so this will tell us if it's lymphoma or not.  Then on the 14th, he'll have a repeat bone marrow biopsy at Sierra Vista hospital just to make sure the first one was accurate and complete.  In the meantime, he'll start taking Prednisone (both a mild immunosuppressent  and chemo-type of drug).  He'll start a new immunosuppressent medicine on Tuesday as soon as it's delivered.  It also has some cancer fighting properties but all that could change depending on the results of his PET and biopsy.....it's seldom clear-cut for Alex and it constantly keeps me on my toes.

For those who ask what to pray for the list is long today:
     That his test results would show no cancer
     That he wouldn't have any adverse affects from the bone marrow biopsy (he got horribly sick the   last time he was sedated)
     That we would find the right balance between suppressing his immune system and fighting the cancer
     That he would not suffer any side effects of the new immunosuppressent medicine
     That my hair will stop falling out (if I leave a trail of grey hair where ever I go, I apologize in advance)
     That I won't let the fear win

Results are in

The results are in BUT......there's always a 'but' with Alex.  😌  First of all, the results are good (let's get that out of the way).  The reason it was taking so long was the doctor wasn't able to get a great core sample, which he was concerned about at the time of the biopsy.  Apparently Alex has some 'weird' anatomy in that area?  Who knew??  The pathologist was trying to work with what he had BUT the cytology of the blood showed no lymphoma.  This is obviously good news which we immediately celebrated with breakfast at IHOP.

The plan going ahead will be a PET scan next week to confirm there are no cancer cells lurking about.  Followed by another bone marrow biopsy, this time at French Hospital with a radiologist utilizing ultrasound to find the exact location of his bone marrow - that tricky little bugger.  Then we will see.......in the meantime we will continue to monitor his heart (this has been added to our nightly routine). 

We may be headed into some unknown territory again BUT Alex has been a trailblazer in medicine before.  We are questioning the transplant teams' desire to put Alex on two immunosuppressents, as is the normal adult protocol BUT we're not dealing with a normal adult heart transplant recipient. So, we will see if we forge a new path again.  The ones we've had to wade through in the past turned out to be beneficial to those following behind; we can only hope for that as we trudge ahead.  I don't relish this possible role BUT God as kept His promise to prepare Alex for everything that has been laid out before him.....He knew Alex's life plan way before we did....just wish we had a heads up sometimes.

I watched Billy Graham's Celebration of Life today (and that's exactly what it was - a celebration) and was reminded so much of my grandpa Sam who was a Southern Baptist preacher.  I think my granspas'  love for Jesus was similar to Mr. Graham and what I remember of his sermons were always centered around surrendering your life to Jesus.  He and my grandma weren't perfect people but their flaws made them human. It made their life of service to God attainable.  I heard the familiar hymns I grew up with and can sing from memory and I was reminded of the simplicity of the gospel.  Sometimes we make it so hard and I don't think that's what God intended.  It's hard enough for us to relinquish control....why would He make it harder?

On a slightly different note (excuse the pun) - I put a lot of stock in God speaking to me through songs.  I think there are a myraid of ways He can communicate with us and one of those, for me, has been through songs.  There was one song in particular, Even If  by Mercy Me; every time I heard that on the radio (usually as a I was driving to an appointment with Alex) I would tense up.  Over time it worked into anger and admitting I'm not there, I can't say 'even if'.....but today, not so much.  More a realization that a lot of my life IS that song.  Don't get me wrong, I'm still not there.  I'm still afraid of the possibilities and my reaction but I also see God providing a path and that's more than I had a month ago.

Random Thoughts While We Wait......

While Alex was having his bone marrow biopsy on Friday, I stood outside the room listening (yes, I listen in on these things).  All the while reminding myself  "God loves him more than you do"; a mantra over and over in my head as I silently pleaded with God to take this cancer away.  I wasn't completely convinced that could be true because how could anyone love my children more than I do?  I was racked with guilt after Ian died, afraid that God had taken him because I love him (present tense, not past) and Alex & Amy perhaps more than I love God; at least in a demonstrative way.  I don't know....does continuing to follow God through the valleys show love?  I've heard from two different places this week about learning the most from the valleys not the mountaintops.  If I've spent so much of my life in the valleys, I must be a slow learner.  People have commented on how much they admire my faith and how strong it is - I honestly don't see it.  I see a woman filled with questions, demanding answers, unsure if her faith will survive this latest assault, angry that God would put us through this kind of trauma again, preparing for the worst but hoping and praying for the best....I don't see it....I see failure and disappointment not a bastion of faith.  But I continue to cling to a God who I believe loves me (and Alex) in spite of all that.

As we wait for Alex's test results, there's a few things I've been meaning to write down.....
Lessons learned from our time at Loma Linda Medical Center as an inpatient:
1) there is poverty around us that I often don't see up close but we saw it there and honestly, it was a little frightening.
2) as a doctor, when you come to tell a family that their child (no matter how old) has cancer expect to spend more than 4 minutes them.
3) hospital bureaucracy is puzzling - I'll leave it at that.
4) when examining a patient with Lymphoma, don't be overjoyed that the lump in their neck is still there after treatment as it will be a good marker for any future progress - glee is not appropriate in this circumstance.
5) when going over treatment options, start with the diagnosis.  Don't assume that we somehow magically know that our son has Stage 4 cancer and it's worse than we ever imagined.
6) the Pediatric Heart Transplant team still walks on water.

I've been rather surprised, but pleasantly, that I'm not completely neurotic as we wait for Alex's test results and I know that calmness of spirit is a gift and God has somehow been able to quiet my soul without the aid of medication.  We're hoping for a phone call on Wednesday with results and how we'll proceed from here. His care is complicated with timing when he'll resume his immunosuppresent medication and how much is too much.  We'll have to find a balance between keeping the cancer at bay (if it's gone) and not rejecting his heart.  I never knew our lives would be like this 28 years ago when Alex got his new heart but I wouldn't trade a day without him.

Alex and I have a routine every night.  We do essential oils on his feet (I may have created a ritual he'll expect till I die cuz he's not complaining about these nightly foot massages) while we watch 'The Andy Griffith Show' followed by three episodes of 'The Rifleman' (I don't like the change to the theme music in Season 4 but there's nobody to complain to anymore).  Sometimes popcorn is included before it's time for bed.  After I get his diffuser ready with more essential oils, we tie a knot in his prayer quilt thankful for a good day then I kiss him on the forehead and give him butterfly kisses on the top of his bald head (he always giggles because it tickles).  Let's not forget the 'I love you's' before I close his door.  It's a lovely way to end our day. 

But for now, we wait......

Putting the fear aside

We have not been idle but I wish we had.  We've had three ER visits in the last two weeks (one was for me - I joke that I was feeling neglected).  One biopsy (me again, docs aren't too concerned and we're not expecting anything to come back) two transfusions and one visit to a surgeon - and those are just the highlights.

Our latest adventure Tuesday night at the Marian ER included a 3 hour wait with 5 hours total, one very painful abscess lancing for Alex and a late night for all of us.  My biggest heartbreak is seeing Alex in pain; I have spent too much of my life seeing my children in pain and having very little control over it.  But my Alex is strong and brave and handled the pain like a grown man - how did he get so brave?  In the aftermath of that procedure I sat next to him, stroking his still bald head (because for some reason that brings him comfort) and I noticed his beautiful long eyelashes were almost gone.  Ever since he was a baby people have commented on how long and full his eyelashes are .....but those are fading fast.

After Tuesday, Alex continued to be in pain and we were able to see a surgeon today (Friday) who found the abscess had not been lanced in the ER (maybe Alex had two???) and had actually grown larger.  So, another very painful procedure for Alex today but he's feeling better know, so we'll see if this did the trick.  It'll be a 1-2 week healing process.

This bump in the road may be the answer to our dilemma of how much chemo is enough?  Eric & I have been conflicted in our desire to kill this cancer without overdoing it and causing more long term damage down the road.  Transplant patients have been shown to not need as much chemo to battle their PTLD cancer.  For whatever reason, they have responded to chemo well and fast; you'd think the opposite would be true since their immune system is compromised but it's not.  We won't proceed with his scheduled 4th and last round of chemo on Monday, 2/12.  His oncologist doesn't want to have him going through chemo and all that entails while battling an abscess so we have a change in plan.  Alex will have a bone marrow biopsy on the 23rd; if that comes back clean then we will probably proceed with a whittled down version of his RICE protocol and just have a few doses of the R - Rituxan.  Rituxan is one of the newer treatments used in fighting cancer and is not a chemotherapy drug. It is an antibody therapy drug used to treat a specific marker on cancer cells.  It is better tolerated and doesn't require a hospital stay.  

We had just gotten off the phone tonight with his oncologist, ironing out which antibiotics Alex should be on and feeling a sense of relief.  Eric promised the doctor we would NOT call him this weekend.  As I'm preparing to dress Alex's wound I see a bump in his neck and my stomach drops.  Have you ever felt that?  That sinking feeling where your whole chest sags and hope rushes out.  I can't remember all the times I've felt this way.  I remember the major ones; when we were with Alex at Loma Linda with his first cancer and Amy broke her leg at home, when Alex told us very nonchalantly over dinner that he had found a new lump in his neck, but mostly when Ian was sick.  I remember where I was and what was being said and reminding myself that I had to be strong for my children  That I couldn't let my fear show.

I'm almost afraid to touch this new, sudden lump; this can't be what I'm afraid it is - it can't be the lymphoma. But I do  touch it and hope rushes out.  But I remind myself of the time I found a lump in Alex's neck after his first bout with cancer and it turned out to be an infection; his body was reacting like it was supposed to.  And I remind myself that his body is fighting an abscess right now and I'm praying that God will be merciful and this will just be a normal reaction to that infection.  We'll start the antibiotics and see if this goes away over the weekend.  My ever practical husband isn't worried; he says it doesn't make sense that the cancer would come back this quickly and he's right but we've had the rug pulled out from underneath us before and it's hard to fight the fear.  It's hard to trust when the fear is so near.

I ask God, why?  Why can't we just have a week.....a few days without something hanging over our heads.  Without the fear of a new battle ahead of us?  Just a small reprieve so we can pretend that our lives our normal.  Where Alex could go on all the sporting trips he's planned with his uncle Mike that he just spent half an hour telling me about tonight?  Why does it always have to be SOMETHING  we have to watch for, wait for, look out for?  This mama bear is tired of waiting for a reprieve.......tired of being afraid.  

One of things that helps put things in perspective are Rick Warren's Daily Hope messages.  He's doing a series called "When you're hoping for a miracle."  I think that's pretty apropo, don't you?  Monday's message was about your life being shaped by your thoughts. He's also talked recently about fear.  Did you know that psychologists have found 645 fears that people have - such a plethora of choices!  And I know some of them intimately.
It's sometime a daily, hourly battle to fight fear because we have walked through the valley and seen how dark it is.  But as I'm writing this, I can hear Alex in his room planning trips with his Uncle Michael.  In this Alex is my example; he continues to live his life, he continues to make plans for the future, he continues to put the fear aside.  God help me to put the fear aside and not miss today.

Blessing after blessing

I was overwhelmed (translation = brought to tears) this week by unexpected blessings. I got a call from our Foundations credit card company reminding me that our card has a balance (from art supplies ordered for one of our programs) and could we please make a payment. I got online to discover it was an order I had placed the day before Alex was admitted to the hospital & has accrued two late payment fees. I was distressed to think the Foundation would be penalized for my forgetfulness so I gave them a call hoping they may be nice enough to remove some of the fee amounts but I got more than I bargained for. The representative who picked up was very kind when I explained about Alex and before we went any further she wanted to let me know she would be thinking & praying for us. That doesn’t happen very often. Then she said she could remove one fee as a ‘first time ‘ offender (my words not hers 😊). Then she was surprised, the system removed both late fees - now it was her turn to say ‘that never happens’. I thanked her profusely than headed out to the hospital to be with Alex while he's getting chemo.
On the way I stopped by Starbucks for fortification for the night ahead. A gal I know saw me driving up to the drive thru, rushed over to the window & wouldn’t take my card - she had given me her free drink...that doesn’t happen very often.
THEN I was serenaded by songs that God knew I needed to hear including a new favorite ....  Broken Prayers.
I have found myself enveloped by Gods love & mercy lately. If you asked me two months ago if I would be saying this, my answer would be no. I don’t know how this story will end & I’m even less sure where it will take me. If we lose Alex I can’t predict what my response will be but I can see that God has taken me to a place I couldn’t have predicted two months ago.

Surrounded

Yesterday I took Alex in for his first PET scan since he started chemo.  This would tell us whether the chemo was working.  It would tell us whether we would need to start scanning the internet and relentelesly texting our doctor about new clinical trials.  It would tell us if our son had a chance of beating this monster.  It would tell us if we could breath again.

As I was getting ready to drive Alex to SLO for the test I was greeted by a text from a high school girlfriend with a link to a song....Reckless Love. I am not usually one for repetitive praise songs but that morning I needed it slammed into my brain the words of this song...."there is no shadow you won't light up, no mountain you won't climb up.... coming after me.  No wall you won't break down, no lie you won't tear down...coming after me."  I needed to be reminded that God loves us THAT much; that nothing will stop Him from pursuing us. He doesn't force us to love Him but he will pursue us.  Have you ever tried to force someone to love you?  What's the point?  Love that is not freely given is meaningless - God knows that; that's why He gives us a choice.  That's the God I grew up believing in and giving my heart to as a 12 year old girl. That's the God I needed to be reminded of Thursday morning.  Lies that try to separate us from Him will be torn away

I get Rick Warren's daily messages and that morning was about Thanking God in advance.  His whole series lately has been about what faith looks like.  I've known, read about this truth my whole life but that morning I put it into practice......but timidly.  I've been too afraid to ask for healing for Alex.  We asked, begged for healing for Ian and it never came so I wasn't sure that God & I have the same definition of healing.  His form took a much more painful route.  But I was brave enough to ask for an improvement in Alex's scan....some hope that we were on the right track.  What we got was so much more than I had dared hoped for.

I also clung to a promise God made to me when Alex was a baby.  He told me quite clearly that 'He had already prepared Alex for everything that was ahead of him'. It happened as I was praying fervently over my son as we waited for his first surgery after his heart condition was diagnosed and I was quite lucid at that moment.  I've always doubted how prepared I was for Alex's future but I wasn't promised that, just that Alex could handle what lay ahead......and that has proven true for the last 28 years.

I listened to KLove on the 45 minute drive up to SLO and EVERY song spoke about God's love and tenaciousness for us......I was surrounded that morning by reminders of a God who loves us.  Or in the words from 'The Shack' a God who is 'especially fond' of all of his children.

Alex's scan was clear....it showed no signs of cancer. They call this a 'Complete Response'.   I wish I could show you the difference between his initial scan and yesterdays....it is almost shocking.  His entire body was 'lit up' with cancer - there was not one place that the cancer hadn't spread and it was terrifying.  Today......nothing.  There was some normal activity in the bone marrow and because we believe Alex's lymphoma started in his bone marrow we will confirm there are no cancer cells with a bone marrow biopsy but his doctor was very happy; ecstatic might be a better word. 

Eric and I are cautiously optimistic only because Ian's first PET scan showed no cancer but that changed in just a few short months to an insidious cancer that we couldn't beat.  So Dr. DiCarlo understands our hesitation but we are no less awed by this overwhelming answer to prayer.  God was doing so much more than just reducing the cancer, He was eradicating it. 

For the first time in 3 months, we can breath......and hope.