Ashlee Smoot May 5th 1982-March 12th 2016

The moment I feared for the last 17 months became a reality last night.  At 11:37 pm Saturday March 12th 2016 my sweet Ashlee took her final mortal breathe.  She was surrounded by all of her family and peacefully moved on to the next journey.  She no longer hurts, no longer feels pain, and no longer has to be worried.   For days friends and family visited with her, and spent the last precious moments of her life with her.  She made the moments count and provided us with memorable moments we will treasure forever.  She was so so strong, she didn't want to give in, but finally her little body gave into the light and warmth, and moved on to live with her Heavenly Parents again.  She has been and is so much to so many.  She taught us how to live a better life, gave us such a deep perspective none of us will ever be the same.
My heart is truly broken...the pain and sadness I feel is something I will never truly be able to descride.  However I know Ash is so happy now.  She is looking down on us all with that perfect understanding, and perfect love we all long for.  Although there will never be an explanation someone can give me in this life, she now knows the reasons why she had to walk such a difficult and painful road.  She is free.  She can run and jump and play again.
As she approached death the veil had been thin at times.  I know right where she is...and that place is perfect.  That place doesn't have cancer...that place only has LOVE and LIGHT.

A few days before she passed we talked about our lives...we were both able to say that we have no regrets...Ashlee lived a life that she was proud of...a life we were all proud of.

Ashlee- We all love and miss you so much.  We will all forever be touched by who you were...Thank you for everything you gave to us.  You are loved by so many!

We will be having her viewing this coming Friday the 18th from 6-8pm at the Kamas stake center, and Funeral services this coming Saturday the 19th at 11am at the same location.  I will post more details as we get closer.

When enough is enough

There will come a time in most of our mortal lives that we will have to take a step back, listen to our bodies, and accept God's plan...even when we don't want too.  Ashlee could have never thought that at 33 years old and with a young family she would have to.  After almost a year and a half of choosing to show everyone that everything was ok, she has clearly felt that whatever the Dr's can give her isn't what her body needs, and things aren't ok anymore.

Since October she has throw up 1-5 times each day.  We have been draining 1-2 liters of fluid out of her stomach daily.  Her quality of life has taken a major decline both mentally and physically.  The standard of care Chemotherapy's have run their course.  She has tried all the natural remedies and therapies we could get our hands on, and up until last week she was on a Phase 1 clinical trial.  That trial included taking 18 horse sized pills per day, and she just never had a good day on that medication.   

After careful  thought, Ash's body and mind are telling her it's time to hand it over.  The suffering and pain are too much...enough is enough.  She feels whatever time we have left won't be planning our lives around trips to the hospital, scans, tests, procedures, surgeries etc.  I want to make it very clear that Ash is not giving up, but that she choosing to live.  We don't know if we have weeks or months, but today Ash told me she just wants to try and be happy, and that is what we will focus on.

Clearly this is a difficult time for all or us.  She is not just my wife, and Finn, Sophie, and Van's mom.  But she is your friend, your sister, your daughter, or your cousin...and if you are reading this it means you care and we are all hurting together.

Ash and I have thought carefully about how we want to proceed with all of this and most importantly about our kids.  We have slowly been preparing them for the reality and gravity of the situation.  They are aware that people can die of cancer, that their Mom has cancer and has been sick.  We wanted to publicly give some guidance on what we feel is best for our kids.

1-We want everyone to treat them and love them the same way they always have...they are kids and despite everything still live in the innocence of being a kid.
2-If you feel the need to give them counsel or guidance please don't without running it by me first.  (family included)
3-Please don't ask them how their Mom is doing.  If they want to talk about it, they will bring it up organically..but they don't fully understand exactly what is happening...and we haven't told them she is going on hospice etc.
4-Please don't talk to your kids about it...at least not for awhile, we have already had kids approach our kids and tell them about how their Mom is sick and might die etc.  As adults, we can't really process this...and kids even less.
5-If you see something that is concerning with them or what they are talking about concerning the situation, please let me know, so I can address it.
6-They don't need every one's thoughts and opinions on what is going on...remember they are 7 and 3 years old...the hard stuff needs to come from their Dad and Mom and in a safe environment.
7-If they are crying give them a hug :)
8-Say a little prayer for them.

I know there will be people who will want to come by and say hi, you can text me and I'll let you know if it is ok.  For those who do come and see Ash, treat her the exact same way you always have, love her...and try your best to hold your shit together.  She loves everyone that has been on this journey in one way or another with her.  I have always said she has been and trend setter...she will go ahead of most of us, and she will be there at the gates of heaven with our heavenly father to welcome us home when our time comes.

new scan results on different chemo

I have been bad at writing lately...I usually have good intentions, but naturally life just gets in the way.  Sometimes I just don't want to talk about the everyday grind Ashlee faces while being on chemo treatment.  In the Middle of June Ash started a new Chemo regimen called Fol-firi.  When you say Fol-firi is sound like "fury"  I picture that movie with Brad Pitt...and an army of craziness going in to destroy Ashlee's cancer.  I actually never saw the movie, but I heard it was pretty violent...I think sometimes Ash feels like she has a war going on inside of her.  

Anyway, we continue to hope the chemo can keep things in check.

Today we got the results of Ashlee's latest PET Scan.  I think I have mentioned before how much anxiety and nervous go along with these results.  So naturally we sat in the little Dr's room for almost an hour past our original appointment while we waited.  It's never fun going to the Doctors, but when you are sitting around waiting for such serious results, your head automatically thinks the only reason they are taking so long is because we are going to get a bad result.  So after sweating through my shirt and wanting to throw up for about an hour, Dr Sharma and his nurse finally came in.  Luckily we got some good news.  Ashlee's tumors are still lighting up, but not as much as before.  The plan moving forward is to stay on this chemo regimen for about 9 weeks and then they will scan her again and then reassess.

I can't imagine Ash going through the wide range of painful side effects and not having a response, so in the scheme of everything, today brought some good news.

Life continues to move forward, and Ash continues to try to make the most of the days she feels good.  We love all of the people that reach out to us and the many prayers said on her behalf, they means so much to us!   We wish we could spend time with everyone!

Not what we wanted...

I know a lot of people are wondering how things went today.  Unfortunately we didn't get the results we were looking for.
Ash's cancer has spread to her lungs and is showing up again a little in her abdomen area.  That explains why she has been battling this cough for the last 6 weeks.  I was worried about the cough and now we know why.

Ash will be starting a new regime of chemotherapy...They told her that she will probably lose her hair this time, and she will be getting treatment every week...

We are kinda in shock again...even though the Dr's we always clear that it is just a matter of time before the Cancer gets active again and she has to get on treatment..we were still hopeful for a good result.

What is hard is last week Ash road a fun 50 mile bike ride with a bunch of her friends and felt time.  She remains positive, and is trying to be strong... but all of this is scary and dealing with Chemo is always scary because even the Doctors don't really know how each person will respond.

We get more results tomorrow

I guess we should maybe change the blog to 33 and Cancer.  Since I last updated this blog we have been fortunate enough to do a lot of fun things.  Ash turned 33 in May and we are hoping her 33rd year will be a good one.  We also celebrated our 10th Anniversary, and were able to take a trip to the Dominican Republic with some friends.  We made a quick trip up to Jackson Hole/ Yellowstone, and have been trying to take advantage of Ashlee being off of treatment.

It seems like I usually end up writing these posts in the waiting room at the hospital...It usually is the only time I don't get distracted with something else.  The emotions are usually brimming when we are here...it is hard to be here, we both still feel like this is just a dream that we are waiting to wake up from.  I remember a Dr. telling us that after a while you will find your feet, and be able to push forward.  I guess the shock has worn off a bit, but I kind of think that has something to do with Ash being off of treatment for the last 3 months.  Life has felt somewhat normal...as normal as life can be...but there are times Ash says she wishes she could just wake up in the morning and feel ok, and have the energy she use to to have.  Like all young moms it is always an uphill battle to have the energy to keep up with kids, house stuff, and personal stuff...but sometimes I think the mental weight can be just as tiring.

There are a lot of nerves around the Pet scans.  While not on treatment we always worry that the cancer is growing or changing, but the idea of being on treatment is tough because we now know the pain and damage it causes to Ash...As Ash gets closer to the scan days she gets a little bummed and nervous.   Internally I am a wreck, but I think we both just try to hold it together for each other and our kids.  We have been lucky enough to have friends and family distract us the best they can with fun activities, outings and trips to help us focus on fun and happy things.  Looking at Ash you would not know anything is wrong, a have had a lot of people tell me that they have to remind themselves that she is dealing with cancer.

The last procedure she had as a Bronchosopy.  They basically filled her lungs full of Saline and then sucked it out.  They tested the saline for infection and fungus.  Both tests came back negative.  The reason for the tests was due to a few Nodules growing in her lungs...we are hoping they are not cancerous.  The problem with the procedure is that it left her with a terrible cough.  Ash gets coughing fits that sometimes she can't stop for awhile.  They are usually bad in the morning and nights.  She didn't have them prior to the procedure (which was about 6 weeks ago)

Tomorrow we meet with her Oncologist and will get her most recent results, and then know what they near future will look like.  Keep Ash in your prayers and I'll post tomorrow or the next day with the results
Thank you to everyone for thinking of her!

What a night!

(thanks Steve Smoot for putting this video together)

On Monday April 20th 2015 an amazing team of wonderful people put on a benefit concert for Ashlee.  The main goal was to show Ashlee how many love and support her, and to also raise money for her treatments and wellness.

My cousin Jason Hewlett is one of the best corporate entertainers in the business and volunteered his talents in efforts to raise money for Ash.  Along with Lindsay Hadley and her team,  and Anything for a friend they put together an amazing night.  The show sold out and over 1000 people were there.  So many people donated time, money, baskets, and an array of items that were auctioned off.  It is hard to put into words how wonderful both Ashlee and I felt.  To see so many people gathered on her behalf was so powerful.

When we got home that night Ash said she felt bad that she maybe only was able to see 30% of the people that were there.  I told her that no one expected her to be able to see everyone, and that fact that she was't able to connect with everyone was a sign that it it was a very successful night.

For those of you that we did not get to thank, and hug, we love you all so much and are so greatful for everything you have done, and do for us!!!!!!!!!!!!!!!!!!!!

For those that know us know how much we value our family, friends, and relationships.  We feel so blessed to have the support we do.  Ash occasionally says she doesn't feel deserving of the all the things people do for us...it is still hard to be on the recieveing end all the time, but it is also very inspiring and heart warming.  In our lives we have never seen a community, friends, and family all join together for one person.  We both feel so blessed and humbled.

As far as Ash's health goes, we kind of feel like she has been in a holding pattern.  Her last Chemo treatment was in Mid March, and she has to start back up on May 6th.  Her lung test came back negative for infection, but that doesn't really tell us a whole lot about what is going on, it just rules out an infection.  They will watch and wait.  We pray it isn't anything.  After another 2-3 rounds of chemo the Dr's will do another scan and then assess from there.

As I write this post we are celebrating our 10th anniversary today.  We can hardly believe it has been 10 years.  I feel like my greatest accomplishment is being lucky enough to have been married to Ashlee for the last 10 years.  We have 3 beautiful children that we are so proud of, and bring us so much joy.  We love the life we have built...but I think the thing we are most proud of, is we really enjoy spending time together.  In the face paced life we live in it is so hard to find the time to really enjoy your spouse.  I was telling a friend, that Ashlee's cancer is the hardest challenge we have faced but the one thing is has given us is almost a perfect perspective on our marriage.  We have spent almost 1/3 or our lives together, and we have so much faith and hope that we will be able to grow old together and celebrate our 50th anniversary.

newest results

These scan results are unbelieveably nerve racking.   Always hoping for the best result, but trying to not have unrealistic expectations is the hard part.  The Doctors have been good to try to set expectations, but but still give hope.  Ash has been really brave and strong through the entire process...I don't know how she does it, but she tries to maintain life and a normal environment for the kids much as possible.  Almost everyone that knows what she has been dealing with will tell me they can't believe she has cancer, she looks so good, and is positive.  Even sometimes I forgot.

We got Ashlee's scan results today.  We got some good news and so news we are not super excited about.  The majority of the cancer has responded well to the chemo, but the Doctor would like to see her have 2-3 more infusions of chemo before giving her a break.   Ash's blood counts are pretty low again, so they can't give her treatment today, and we will wait until next week...

There are a few nodules in her lungs that the Doctor has recommended for her to do some additonal testing on her lungs and to see a pulmonalogist.   The thought is that the nodules are hopefully not cancerous, but something else...we should know in the next few days.  We are hoping it's nothing to be worried about.