Thursday, December 27, 2018

Where we go from here


I think I've tried starting this blog about 5 different ways.  Maybe its just the realization that I'm having to write it that makes none of them read like they should.  As Alli and I had said to each other before, this wasn't supposed to be our story but it is our story.    

Alli's sodium levels have been stable enough that yesterday afternoon she no longer was deemed an ICU patient and today we were moved to a different floor in the general oncology area.  Their best idea is that the seizures that Alli had triggered her brain to release a hormone that made her kidneys retain water when they shouldn't have been.  As they retained more water she became more diluted, dropping her sodium levels lower and lower very rapidly.  With a second anti-seizure medication she has not had any more seizures and she seems to be able to keep her sodium levels elevated where they should be. 

While I'm sure the sodium contributed to the responsiveness over the weekend it was not the only factor to her mental and physical state right now.  Since Christmas Eve Alli has had some okay times and some not so good times.  In the okay times she can have a little interaction for a couple minutes at a time.  Her speech is still slurred and she struggles to find words or remember part of the conversation but it is so beautiful to hear her voice and hear "I love you" one more time.  The not so good times she really has a hard time staying awake, isn't responsive, and has some restlessness and delirium.  Regardless you always see moments where you can see it in her eyes that she knows exactly what she wants to say but her body just doesn't want to listen to actually do it.  

Each day and hour seem to be different and oscillate between those states.  Yesterday was a better day with more interactions and getting out of bed for the first time in almost a week.  Today was not quite as good of a day with a lot of sleeping, very little interaction with others, and seemingly more headaches and nausea.

With the sodium issue figured out we needed to work through what to do about radiation with her oncologist and the radiation oncologist.  No one could say they foresaw enough chance of a benefit from completing the radiation that it outweighed the risk that it would make Alli's condition regress to more pain, nausea, vomiting, and delirium.  With that the doctors and I made the final decision to not move forward with the radiation.  It was something I had discussed with the family yesterday but it was part of the hardest decisions I've had to make.  

With no other treatments available and Alli not being in a mental or physical state to travel to a clinical trial in Texas we have started worked with palliative care on a care plan for outside the hospital.  With the full time care that Alli needs for meds and physical support we are looking at different in-patient care/ hospice options that are close to our home.  In addition to Alli's care needs, I made the decision based on what I think will be the best option for Malena in the future.  When Malena and I had talked before we had talked about what could happen if Mom didn't get better.  I never wanted to take away from all of the great memories we all had in our house; the laughter, the fun, the love we all shared together.  I don't want those replaced or diminished with memories of nurses, hospital beds, medical beeps, alarms, etc with Mom and our house.  

I'm not quite sure how we are going to get through the coming months but I know we will and I know it will involve the support of all of you.  It has the last couple weeks as well as the last 8.5 years we have been fighting this terrible disease.  Wherever we fight you fight.  

8 comments:

  1. Our heavy hearts are breaking for you-Barrett, Malena and Alli. I can’t imagine how difficult this journey has been and we are forever grateful that you do what you do to keep us informed. We love you and we’ll keep praying. We fight your fight.

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  2. Sending so much love. Thank you for keeping us all informed. We’re all fighting beside you.

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  3. Sending light and love to surround you all and peace, comforting peace.

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  4. Sending you lots of love, pray and light. Thank you for keeping us informed. We continue to fight right beside you.

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  5. I know this wasn't the way you all hoped your story would go. Please know Alli's thoughtful words, gifts, and insights about this beast called melanoma have been a source of strength for me on my almost 10 journey. I'm so grateful I stumbled upon Alli's blog. She reached out to me thru email and text. My only regret is not meeting you all in person. We almost made it happen a few years ago when you were visiting MN.Im praying for peace during this most unfair and difficult time. Hugs from WI.

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  6. Barrett - this story should be no one's story, and I am so sorry that you all got stuck with it. We have never met. I just know Alli from a former career at WSDOT. I have followed this blog since the beginning. I now work in healthcare. Because of yours and Alli's willingness to share this story, please know there are a few others out there that were able to alter their story because of Alli's bravery, openness, and words of wisdom to prevent this disease. Every preventative conversation, or referral for dermatology eval I do for a patient, I do so in Alli's honor. It has made a difference. I wish you, Alli and Malena comfort and peace always.

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  7. Sending hugs and love to continue fighting this unfair story. We’re here for you.

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