2 Years - A letter to my husband

It is so hard to believe that it has been two years. It feels like just a moment ago that we said goodbye but then it feels like so long ago since we saw your face...

I guess I should clarify. This is Andy, obviously. Jon passed away two years ago today. It was his 35th birthday and also Father's Day. I struggle with that, is June 16th a day that we should celebrate Jon's life or is it a day to mourn his death? We seem to do a fair amount of both.

Anyways...I'm not sure if this blog is for him or for me or for the kids to read later so just bear with me...

Life changes so much in two years. We moved last year out to Crooks. That's right I didn't listen to you. We moved out to a small town with a great community and we have a lot more space inside and outside. The kids weren't sold on the idea but they've grown to love it.

The kids. Oh my how they have grown. Little Jonah was only two when you passed and I know you wondered what he would remember of you. But at age 4, Jonah is a miniature version of you (for now - he's going to catch up to your height one of these days). Jonah absolutely does not like to get out of bed in the morning - he stretches, pulls the covers up over his shoulder and turns to his side just like you did. He still gives the best hugs and has a grin that goes on for miles. Jonah is a boy thru and thru. The farm is his favorite place to be and he wants to be farmer when he grows up. When he can't be there, he loves playing with his farm toys and Legos. Jonah asks questions about you - my favorite was if you were a rock star. I asked him why he thought that and he said because you were always singing and playing music.

When Jonah isn't happy with me, he turns to his big sister Vaeh. Can you believe it but little Vay-Vay turns 9 in a few weeks? She is still our mother hen. She always wants to please everyone and Jonah knows that so he's got her wrapped around his finger. We've had a few talks about how she can't always give him what he wants...and she tries not to give in all the time. Nevaeh is still wanting to be a teacher, she loves to read and just taking care of kids. Nevaeh is still such a sweetheart and has a really great group of friends. Vaeh's tried a few different activities since you've been gone. She decided dance wasn't her thing so she tried softball last summer. This year she decided to do gymnastics. She loved it! And she did Girls on the Run too. She is fast! And she absolutely loved running - and believe it or not but I helped coach too.

Your little Layla is going to be in first grade this fall, she's 6. I'm not sure how that happened - a moment ago she was two, then I looked up after you were gone and she was already four and now kindergarten is already over. Layla is still the enforcer. Not afraid to speak up and put anyone in their place. I love that about her. If you are wrong or being mean, she will be the first to tell you. But she's got such a huge heart. Her giggles are contagious. She still claims to have 'one' stinky foot (don't ask) just like she always did and we have your personal handshake as our bedtime routine.  Layla is a whiz at school. She loves her math - addition is so easy for her - and reading and she has a thing for card games. Believe it or not, even though they are two years apart Layla and Jonah are basically the same size right now. People have commented on how cute my twins are - which just makes Layla mad so she quickly tells them just how much older she is than Jonah.

Last but not least, Alivia. She's 10 going on 11 going on 15. Middle school starts this fall. She's going to be in 6th grade. You would be so proud of her. She's becoming her own person. She doesn't follow the crowd. She doesn't have a ton of friends but the ones she has - those are the real ones she needs. She stands up for herself and for her friends to the girls who are mean at school. She still loves to sing with the children's choir at church and joined band as a clarinet player last year. She's really good at it too. Liv played basketball this past year and tried volleyball too. But when forced to pick what she wanted to do - because of Wednesday night practices - she chose choir and I was proud of her for it. She just spent a week away at Shetek Lutheran Bible Camp where I went growing up. In addition to that Liv and Vaeh joined Destination Imagination this year. Its opened up a world of different ways for them to approach things. In fact, helping cancer patients was their service project.

Your babies are amazing. They push me to try new things. I coached DI this year and ran Girls on the Run with Vaeh. Remember that deal we made after Livvy was born - you would take care of the outside stuff and I would take care of the inside. What was I thinking? I love being outside. I don't necessarily love mowing but it allows me to clear my head. We even planted a garden this year...and I have no clue what I'm doing with it, but the kids are in charge of watering it. So far so good. I also plan on spending many hours reading on the deck.

I know you know this, but we lost your Zoe this winter. We were devastated. She was such a good dog. She never did sleep in our bed again after you were gone. She always checked on the kids before bed, but she slept with Layla once we moved to the new house.

Those first days, weeks after you were gone were so hard. The first week was a blur. But I'm so grateful that I had our babies. They forced me to get up every morning and get moving. I had to go back to work shortly after you were gone. Surprisingly I'm grateful for that too. There's nothing like a bunch of friends waiting to see you that can distract from the pain. I couldn't imagine having sat at home doing nothing for weeks. Nights were rough for quite awhile and still are sometimes - like tonight, but I have Reina all cuddled in to me (she knows when I need her) and her new brother Taz right next to me.

We are doing wonderfully. We miss you. Of course we miss you. There are tears shed at bedtime for you and when the babies have owies. There are many moments when I wish you were here to be my sounding board and voice of reason.  There are happy moments too. Lots of happy moments that we want to share with you.

We went to Disney World this year. Just me and them. And no, I'm not nuts. I had the most relaxing vacation. Between the giggles and squeals of joy and the drenched thru to the underwear moment on River Rapids, when your daughter looks at me and says dad would have loved this. I know you are here with us in every smile, every tear, every time I see a rainbow or the first star in the sky at night you are in our thoughts. But I promised you that we would be okay and we are okay.

I love you baby.

Final Journey

Quick and very blunt update - The leukemia has returned and is very aggressive. Jon's back at Sanford. He has fought courageously for nearly three years. Although we haven't been given any specific timelines, we have been told that soon his fight will be over. The Drs. are keeping his intense pain manageable, but the medicine makes him very sleepy. Thoughts and prayers for Andy, the kids and our parents during this difficult time. Not only is today Father's Day but it is also Jon's birthday. Thanks, Jess (Jon's sister)

AML: Quick Update

This will be short.  Just an update as to how I a fairing at home. 

I continue to do labs each Mon, Wed and Fri.   It's just a quick trip and they call me back in if I need a transfusion.  Last week I received platelets on Monday and Friday.  I felt pretty dehydrated those days so I also requested hydration and so they pushed a liter of fluid at the same time. 

Thursday & Friday my tank was pretty much empty.  I had little energy and was getting frustrated at how poor I felt.  Saturday I felt marginally better.  Sunday was Mickey's (my niece) birthday.  I woke up feeling pretty good and had a pretty good day.  I pretty much perched myself on the couch and stayed there, but we made a full day of it. 

Today I feel much better.  My labs confirmed what I was thinking.  My counts are beginning to recover.  My white count moved up to .8,  red blood up to 9.8, platelets 38 and ANC at 408.   All good stuff considering where I was last week. 

I was most worried about my white count recovering since it has been an issue with my latest rounds of chemo.  It's still early, but to get where we're at is a very good thing. 

I'm still settled in at home.  Not much stamina but able to get around for the most part. 

It's a good day. 

AML: The Big Elephant in the Room

Now that I'm closer to home we're looking at the next phase of my treatment.  

As it is right now I'm a week from my last round of chemo.  So my counts are still falling and I need platelets and red blood infusions from time to time.  Just like any other round of chemo I'll have another week or so at the "bottom" and then we'll see just what kind of shape things are in.  Hopefully my beat-up bone marrow is able to produce healthy platelets and red blood cells.  We'll also see if the lymphocyte infusion I had on Monday provides a boost to my immune system recovery. 

Beyond that, I have pretty much exhausted my treatment options.  Through all my chemo treatments and the stem cell transplant we've kept knocking the leukemia down but it has never been quite enough. Unfortunately the byproduct of continually killing the weaker cancer cells is that we have created a very acute and drug/treatment resistant leukemia. The drugs that used to work well, just don't any more. 

From here things get kind of heavy and depressing.  To be honest I've struggled to figure out just how much I want to keep sharing about this experience.  It's a lot more enjoyable and in my nature to share messages with a bright side or something I can poke a little fun at.  I'm just not sure there will
be much of a bright side to what is coming.  I've come to the conclusion that I just as well finish the story regardless of whether the bad days outnumber the good days. 

Since my treatment options are limited we now start making decisions about palliative care.  In other words we start talking about improving my quality of life rather then curing my leukemia.  We're having conversations about pain management, blood product replacement and so on.  The good news is that I've got a doctor who understands that for me, the most important thing is limiting the amount of time I spend in the hospital separated from my family. 

So the big question is how much time.  The problem is that no one can answer that one for me.  Optimistically we would all like to have this turn into one of those situations we all hear about where the doctors say that I had 3 months and that was two years ago.  Realistically, when you look at the nature of what I am dealing with that seems quite unlikely.  I guess with the rest of the awesomeness I have to deal with, I make some pretty wicked awesome leukemia cells. 

As long as my body is able to recover enough to produce platelets and red blood cells I have to think things will be easier to manage.  We'll be in a mode where we try to prevent or treat infections and replace blood products as needed.  At least that seems fairly familiar and certainly doable as an outpatient.  At some point however not treating the leukemia means that the cancer cells will overtake the healthy ones.  So the question remains...how much time.   

With no way to answer that we take things from here day-by-day and are making preparations accordingly.  Andy and I are happy to be home. The kids are happy to have me (almost) home. I am going to enjoy every moment I am given.  Even though I am back, I'm still recovering and it is frustrating knowing that time may be limited but I am also held back a bit because of my last chemo treatment. 

We still want visitors. Friends and family are so important to us. I guess by sharing this post we don't have to dance around the big elephant in the room. We don't want people to distance themselves because I am home and they think we want more family time.  We'll find the right balance and I guess I'd rather have people continue to rally around me now that I am home to enjoy it. 

I am so thankful for the unwavering support we've received from friends and family.  It has been a long road.  With treatment over, this particular journey is nearing an end.  I have accepted it. I'm okay with it.  Prayers are still needed.  I'd love to have my sense of taste straightened out if anyone is taking requests. (That's right, of all things, I just want food to taste like food again).  I'll continue to keep writing and sharing memories.  It's a good way to cope with things. 

The fight continues...Miracles happen...

AML - Back to Sanford.

Monday's Donor Lymphocyte Infusion went fine.  The DLI was really nothing special.  It was like getting any other blood product.  Hopefully this will boost my immune system a bit. 

 

With the DLI done, I am pretty much done with what Mayo can do for me.  So we started the conversation about getting back to Sioux Falls. 

 

In fact, I am in transit right now.  They wanted to transfer via ambulance.  Right now I am about half way between Rochester and Sioux Falls. 

 

My preference would be to go home, but there are a few things to sort out with my meds that need to be done inpatient.  At least I will be closer to home and the kids. 

 

So as of this afternoon I am back in Sanford Hospital.   It will be a welcome change to Rochester Methodist.  I'll get all my nurses back and be much more comfortable.  There are lots of smart doctors that treated me at Mayo, but it often seemed like there were too many cooks in the kitchen. 

 

I am feeling fine for the most part.  Some stomach issues mainly due to the doctors messing with my meds.  I think if I get back on the regimen I was on prior to heading to mayo I will be fine.   

 

Looking forward to settling in and seeing the kids tonight.

 

It is a good day. 

AML: My First Trip to ICU

Yesterday was an interesting day.

I woke up early feeling fairly good even though I had not gotten much sleep due to constant interruptions (nurses, machine alarms, 3am blood draws and so on) through the night.  I needed platelets so those were started about mid morning. 

I generally don't have issues with receiving blood products.  I usually get some Benadryl and Tylenol prior to getting an infusion just to be sure.  For some reason I started developing a fever late morning yesterday. 

Fevers aren't unusual for me.  I've had a few low-grade (less than 100) here and there during this stay.  This one was up to 102 which indicated something more significant going on.  In all likelihood there was some kind of infection breaking through.  So generally when a fever hits 100.5 or higher a  number of things happen. First they run blood cultures and urine to see if  they can identify the infection.

Blood cultures are no big deal.  They generally draw blood samples from my PICC and also directly from a vein.  They bottle these up and send them to the lab to see what, if anything, grows.  Results can take several days.  In the past these most often turn up negative, but I have had eColi, MRSA and Aspergillus appear before.  All 3 of these are quite nasty and can cause significant problems when in the blood stream. 

The problem yesterday was that not only did I put up a mid-grade fever, but my heart rate was at 150 beats per minute and my blood pressure was extremely low.  Put these 3 things together and the doctors here (all of them) got a little worked up. So... about mid afternoon yesterday they sent me up to the Rapid Response (Intensive Care) unit.  This unit can more constantly monitor my vitals and quickly administer drugs should my blood pressure keep dropping or should I go into cardiac arrest.  Both were serious possibilities.

You can imagine things move pretty fast in the Rapid Response Unit.  They sent me for more CT scans of my chest and abdomen.  I received extra red blood and platelet transfusions.  And they immediately started pushing fluids really fast.  They have these power cuffs where they can push a liter of fluid into my system in about 15 min.  The normal pumps usually take an hour, which is still quite fast. 

During all this, I felt fine.  Though it was all pretty serious stuff, none of it was causing any external symptoms.  By about 6:00 my fever had dropped and they had pushed about 5 liters of fluid which stabilized my heart rate and blood pressure.  No other drugs or major  medical intervention needed. It turns out I was just really, really thirsty. 

My blood cultures are negative so far and my CT scans are clear except for what is probably a minor irritation in my gut.  The dehydration issues are most likely the result of the chemo. Since my last treatment is today, my kidneys should do a better job of retaining fluid.  In all likelihood, I'll be transferred back out of ICU sometime this afternoon.  Going forward we'll have to watch my kidneys to make sure that no permanent damage was done. 

It was an interesting day to say the least.  Things are still progressing for my Lymphocyte infusion on Monday which opens the door to head home.  For some of the criticisms I've mentioned about the way things work at Mayo, I'll say everyone was at the top of their game yesterday and I was very well tended to by all the right people.

AML: Final Curtain

Well,  we got my bone marrow biopsy results back yesterday afternoon.  It wasn't what we had hoped for but fell in with what we expected.  I am now showing 20% blasts (leukemia) in my marrow.  So we got  10% improvement over the last treatment.. 

We've elected to complete the current course of chemo I am on.  So Tuesday I started chemo again.  I will be done on Friday.  Then we wait a few days and do the Donor Lymphocyte infusion(DLI).  I expect to be transferred back to Sioux Falls (or better yet, home!) by the middle of next week.  I will get any blood products I need as an outpatient at Sanford while we wait for the DLI to do its thing.  So the good news is I will be home shortly and I should be able to be home, home.

As far as prognosis goes, I'll be on wide spectrum antifungal, antiviral, and antibiotic drugs creating a artificial immune system for me.  Time will tell if my marrow can recover enough to produce red cells and platelets I need.  Though I can receive transfusions of those products, I would like to avoid daily transfusions and let my marrow do at least that part correctly. 

When I get out of here we'll just be trying to avoid infections that we can't treat.  Infections will be the biggest risk to me.  But, I don't intend to be holed up at home hiding.  There is still enough living to do.  This could go on for weeks, months or maybe years. No way to know really...  I'll take every day as a gift and want to make something of it. 

We're still getting so much support from all of you and it is very much appreciated.  Thanks for the ongoing prayers and the stories you are all sharing.