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.  

Christmas

Merry Christmas to all and to all a good night.

 

Monday Update

Last night was another rough night but hopefully one that ends today with Alli regaining more of her responsiveness.  I went to sleep just after posting the blog and was hoping for a peaceful sleep for both of us.  We didn't get that wish as the doctors woke me up at 3am and said that the most recent labs had shown Alli's sodium levels to have dropped a lot from the previous day and that they were having to move her to the ICU where they can provide the drugs and monitoring for patients that have that low of sodium.  Not the wake up call we were wanting.    

After moving her to ICU they started her on some meds to slowly raise her sodium levels back up.  As her sodium levels have increase so has her responsiveness to everyone.  I heard her say her first word in over 2 days at about 6am when she responded to a question from the ICU nurse.  It was just a single word and was slurred but it was so nice to hear her voice again.  As the day has progressed she has gotten more responsive to answering questions for the nurses and being able to have short interactions with people.  Her speech is very slurred and she is searching for her words a lot but so much improved from the previous 2 days.  Her team of doctors is now also every growing as she now has the ICU oncology team, the general oncology team, the radiation oncology team, the neurology team, and the nephrology team all consulting on her care.  

Today also ends with more questions but not a lot of more answers.  I think it is apparent that the sodium levels were contributing to her responsiveness.  The reasons why her sodium level dropped so fast and how much her responsiveness will continue to improve remain a wait and see.  With the focus today being on improving her sodium levels they also cancelled her radiation treatments for the foreseeable future.  If and when we restart the radiation gets added to the list of unanswered questions at this time.  As I said yesterday it seems like for every answer we get, a new question or two appears.  

But for this day I am going to focus on one answer we got today... that she is being more responsive and can have a short conversation.  That is one of the best Christmas presents I could have ever wished for.  I don't know what answers tomorrow and the next day and the day after that may bring but we will cross those bridges when we get to them.  

On this Christmas Eve night Alli, Malena, and I would like to wish everyone a wonderful holidays filled with love, laughter, and joy.  

Alli Sunday Update

This is going to be a fairly short update tonight as its late and in reality it seems like every day ends with as many if not more unknowns that it started with.  What we do know now is that Alli actually had 10 seizures during the 16 or so hours they were doing the continuous EEG testing last night and into this morning.  The seizure activity in her brain was not from her entire brain, but one specific section every time. From that they added a second anti-seizure medication to her ever growing daily medication list.  

Alli has also not really been responsive over the last 36 hours.  The doctors know the different possibilities as to why that is but unfortunately there isn't a test or scan or anything to say right now it is because of this single reason.  The only definitive answer is that time will reveal what the answer was.  My engineer brain understands that but also really doesn't understand that.  I know what they are saying is rational but it has just been engrained in my mind that there is an answer to every problem.  Plug the information into an equation and out pops the correct answer.   I just wish I knew what that magic equation is for this problem.

We will talk with the doctors tomorrow morning and make a decision on if we move forward with the radiation tomorrow and there after and assess how these new medications are working.  More to come.

Wherever she fights you fight.

Family update and thank you

Alli would probably definitely get mad at me if I only wrote about her while I am in control of this blog and we all know I don't want her mad at me when we get home.  At a work meeting we were in together Alli once dropped the line "Mr. Hanson should listen to Mrs. Hanson". I may not have listened that time but I'm listening this time.  

As important as it is to both Alli and I to be open and honest with Malena about everything it has been equally, if not more, important to always keep things as “normal” as we can for her.  With all the tough conversations these last two weeks have required it has been wonderful that Malena has been able to have play dates with her best friend Tori and do many of our annual traditions for this time of year.    

Those traditions included decorating a gingerbread house Tuesday when Alli got home and going to Snowflake Lane last night.  Snowflake Lane was bittersweet for all of us.  There were a couple of sad moments as you would expect but there were also so many smiles and laughs throughout the night with the Estrada’s.  The telling the jokes, laughing at something silly that was said, including Malena tossing out the idea that since the “snow” is soap that being there should count as her shower, the just being a kid and a family.  Cancer wasn’t going to stop there being some fun for all of us in that moment.

On that note, I also want to thank everyone for all the generosity and messages that we have gotten.  From the happy mail to the text messages, from the dinners to the GoFundMe page, and of course the amazing lip sync video.  They have all been received with appreciation, laughter, tears, and joy, many all at the same time, from the entire family.  You all have truly epitomized and brought to life her saying “wherever she fights, you fight” and we couldn’t do it without all of you.  I may not get to replying to every text and my better half has the card making skills I don’t possess but the outreach and support has meant the world to me.  I want to end this blog with a heartfelt thank you. 

Hospital Update

Last night (Friday night) was not a good night.  At 3:30am Alli had a seizure that lasted about 10 minutes.  She was feeling nauseous and the nurse and I had just sat her up when she started to have the seizure.  Her body straightened out as her muscles locked up.

She was essentially non-responsive for the next 3.5 hours until she started opening her eyes again about 7am.  She has been opening her eyes off and on since then but is mumbling what words she does try and speak.  They had scheduled a special Saturday radiation (normally its just Monday thru Friday) to make up for the one that she missed on Thursday to try and keep her on schedule and get through what we hope are the side effects as fast as we can.  They took her down for the radiation treatment this morning but because of the seizure she isn't cognitive enough to lay still and not grab her head where the radiation is going.  They had to call off the treatment because it just wasn't safe for her to be grabbing at her head while they are sending radiation to her brain.

We are waiting to talk with the neurology team today to get a little more info about the plan moving forward for treating the seizures and why she had a seizure last night.  For her radiation we will talk with the radiation oncologist on Monday to see if we end it at 8 doses of radiation (don't do the radiation on Monday), 9 doses (do radiation on Monday and then stop), or if extend it to have a treatment on Christmas day or the day after to get the full 10 doses.

Need a few more prayers that she can recover from these last two seizures and the symptoms she has been having start going away as we take a break from radiation.

Where ever she fights you fight!

Back to the hospital again

Our time staying at home unfortunately ended again as Alli had to be re-admitted to the hospital late Thursday night.  After the rough night at home on Tuesday night, Wednesday night was actually a little better.  Alli tossed and turned all night so it wasn't great but she wasn't woken up by headaches or nausea.  We got her up for breakfast and her first set of morning pills and she had a mild headache and a little nausea as she ate a little breakfast.  She rested for about another hour then she had her second set of morning pills and started to get ready to head to her radiation appointment in the morning.  As she was getting ready she started to feel worse and worse with nausea and a headache followed by vomiting every half hour or so.  

After an hour of not getting any better we headed into UW and after seeing the radiation oncologist we headed to the ER instead of getting her radiation.  The initial set of brain scans didn't show any new findings and no acute bleeding in the brain which was good.  Her nausea and headaches weren't getting any better and then she had a seizure for a few long minutes while in the ER room.  Between the seizure and the medicine they gave her just after the seizure she was stable but essentially non-responsive for about 3 hours before they were able to get her to open her eyes by squeezing her finger.  The next 4 hours were monitoring her in the ER as they determined whether she was going to be admitted to the oncology unit or into the ICU.    

So about 1am on Friday they admitted here to the general oncology unit.  She is a little more responsive now but still has consistent headaches and nausea they are trying to control as best as they can.  We haven't seen the doctors yet this morning to know what we think the next steps will be and if we think this is progression now or side effects of the radiation.  She did seem to get worse as the week went by with the radiation going on during the week.  She has had 7 of the 10 planned treatments so not sure if we will try and continue with her being inpatient or if we will stop.  More to come.

Where ever she fights you fight! 

Home from the hospital

Hospital stay #2 ended on Tuesday afternoon after her radiation appointment.  It was great to be home and Malena was super excited to have Mom and Dad back home.  Our first night at home was a rough night as Alli woke up at 3:00am with an excruciating headache.  With her symptoms getting slightly worse again over the last two days there is more thought that the symptoms that triggered the second hospital visit may have been more related to potential radiation side effects.  She has completed 7 of the 10 treatments completed so the plan is to try and push through with the last 3 treatments.  We are going to step up some of the pain and nausea meds on a routine schedule to go with the higher dose of steroids she is on.  Here's hoping tonight goes a little better for Alli.  

Hospital Update - Day 3

Alli had a really good afternoon yesterday.  She still had some speech and short term memory issues but she was awake and alert for over 6 hours, the most she has been in probably a couple weeks. She was also alert and with it enough that they let her start eating food again which is another great step.

In talking with the doctors this morning at rounds the plan is to keep going with the planned radiation treatments, including today.   While she is on radiation they are also going to leave her on the higher dose of steroids to hopefully offset any issues from the radiation.  A couple of the early bacterial infection cultures came back negative for an infection so they are giving them one more day before saying it wasn't an bacterial infection.  The viral infection tests are still pending.

On some better news if she can keep improving as she as been then they think the goal would be to be discharged tomorrow (Tuesday) after her radiation treatment appointment.  I know a certain 10 year old that would be ecstatic to have her mom back at home so we are focusing on that right now!

Hospital Day 2

Quick update on Alli. 

She is better this morning as she has been talking for a couple short stints but is still sleeping the vast majority of time.  When she is talking she still has very little short term memory and is struggling to find her words a lot.  You can see in her eyes the frustration that she know exactly what she wants to say but that her mind just can't figure out how to get her mouth to say it.  

They have been giving her a bunch of different medicines as they don't know what caused the symptoms to come back.   They are giving her different short acting and long acting antibiotics, a much bigger dose of steroids, and a bigger dose of the anti-seizure medicines.  They have the test back for one specific infection that was negative and are waiting for the cultures on a coupe other infection tests.  If those come back negative they unfortunately don't have a test to say if this was a side effect of the radiation, disease progression in the brain, or some combination.  Absent any infection finding, the radiation oncologist recommends that we keep going with the radiation tomorrow (Monday).  Melanoma does not usually immediate react to radiation so the hope/ conjecture would be that if this was progression that this would be the delayed reaction to the radiation. Therefore it would be better to keep going and hope the radiation starts working soon.

Wherever she fights you fight!

Back to the hospital

Alli is back in ER (on Saturday) and being admitted to hospital.  She got sick a couple times during the night then got really delirious at about 6am and still is delirious (about noon). They took a CT scan and it looked the same as last week. They cannot tell right now if the deliriousness was caused by disease progression, side effects from swelling of the brain from the radiation, or another infection that is being amplified by her brain metastasis.

Heartbreak

We have never hidden anything from Malena since she has gotten old enough to "understand" what was going on with Alli.  I put quotes because I don't think I am old enough to "understand" what is going on now and I'm 40.

Since the doctors told us on Tuesday there had not been a good chance to talk with Malena about their prognosis but I did tell her tonight as I would never want her to hear it from anyone but us.  To know you are going to break the heart of your daughter into a million pieces and tell her that mom is fighting like hell to beat the odds but you can't promise that she will is the hardest conversation I hope I ever have to have.  I might forever question if I did it in the right way; did I say it too strong, not strong enough, did I say too much, not enough, could I have used different words... heartbreak

Alli completed her third radiation treatment today.  She has been sleeping a lot since we have got home on Tuesday night, probably 20+ hours a day.  Her nausea and headaches are still there but, knock on wood, they has been more on the mild side.  She was able to awake for a little more tonight which allowed us to have a little family night watching the first episode of Top Chef on DVR.  For a few moments it felt like what normal used to feel like.

More to come later.  Wherever we fight, you fight!

-Barrett

Important Alli Update

I wanted to give all of you an update on what has been going on with us over the last couple days.  As Alli has always said, wherever she fights, you fight; though this has will be the toughest blog for me to write.

Alli was admitted to the hospital on Friday night.  She got very, very nauseous near the end of the day at work so I started to drive her home.  In addition to getting sick on the way home she also started to not recognize where we were even though we have driven that stretch of road countless number of times.  As we started to head to the UW ER department Alli started to get more delirious. 

Starting that night and over the following days they did numerous different scans of her brain and her chest.  The scans show that the melanoma spread to Alli’s brain cavity, spinal fluid, and around her spine.  They believe that the melanoma may have disrupted the flow of fluid in her head and irritated the brain that has been causing her nausea, headaches, and may have caused a seizure that led to the deliriousness.  She has also been experiencing challenges in her short term memory where most things don’t stick in her memory.  So remembering conversations, if she saw a doctor, etc are very hard for her right now. 

Alli started radiation therapy on her brain yesterday.  She will have it every weekday for the next two week, with the last scheduled treatment on Christmas Eve.  The hope for the treatment isn’t that it will kill all the cancer but that it will reduce the symptoms she has been having lately so she is more comfortable.  After finishing up the radiation the plan is for her to go back on an immunotherapy drug, a different brand than what she was on previously, with infusions every three weeks.     

Now for the hardest part… Given how her melanoma has reacted to all the previous treatments they think there is a slim chance that it will stop or push back the melanoma.  Their primary hope is to slow down the cancer.  There is never an exact science to this and people beat the odds and prove them wrong but they think it could be that she has just a couple months left.  As most of you know Alli is a very determined woman and is doing everything in her power to beat the odds.  We need a few more prayers as she picks up her boxing gloves again for her and the treatments to beat the odds. 

F*ck cancer.  Wherever she fights, you fight

Barrett