Three-year-old Faye was diagnosed with Acute Myeloid Leukemia on April 11, 2011. After 135 days in the hospital, Faye was able to spend 3 years at home. On September 5th 2014 she was told that she had relapsed. She was able to achieve a second remission and had a bone marrow transplant on Oct 17th 2014.

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Tuesday, September 9, 2014

No News is Good News

There have not been many updates to Faye's blog lately because we have been having too much fun being normal (if that's possible).  It is with a heavy heart that Stacey and I update this blog with news.  Bad news.  We found out on Friday, September 5th that Faye's cancer has returned. We are completely heart broken and scared.  She is back at Texas Children's beginning chemo treatments with the goal of a second remission to prepare for a bone marrow transplant.

Below is the story leading up to today followed by the game plan moving forward.  Which is exactly what we plan to continue doing......moving forward.  I hope too that we can make clear that while we are devastated, confused, angry, etc., we also recognize our Heavenly Father has provided so many wonderful blessings leading up to this day. These blessings have and will continue to lift us up and keep an eternal perspective while facing this trial. We absolutely feel His divine love for us through those lending helping hands and offering kind words.  His army of angels are around us and we cannot adequately express our appreciation.

Off and on for months, Faye has been having leg pains.  They would last anywhere from 3 days up to 7 or 8 in 4-5 week intervals.  Given her history we asked for blood tests almost every time. Each time her blood results looked great.  Faye went to her first day of school and came home complaining.  The next day (Tuesday) she reluctantly toughed it out and Stacey got a call at the end of the day from her teacher saying she had a rough day.  That night we decided we needed to call the doctor in the morning.

The doctor's office recommended giving it a few days. Stacey called me and we decided to take matters in to our own hands because we knew something was up.  We called right back and said we needed blood work done that day and if the results were good we need to be referred to an orthopedic doctor.  The results looked good and an appointment was set up for Friday with the otrho.  After a brief visit with him he thought everything seemed ok but xrays and MRI were options to dig deeper.  We asked for both and had them done later that day.

A long Labor Day weekend passed while Faye was still in pain.  Wednesday afternoon Stacey got a call from Faye's oncologist.  They noticed irregularities in her bone marrow.   She said we would need to come in for a bone marrow biopsy to rule out any of the bad stuff.  They don't see enough MRIs of kids post AML treatments to know if the irregularities were normal for her or if it was something else.  We were scheduled for Friday morning at 9am.

Friday morning we talked first with a oncology doc at the clinic building to discuss the MRI and what had been going on the past few months.  When discussing everything I had a sick feeling that it was going to be cancer but brushed it off as my typical paranoia.  After a lot of waiting she was finally taken back to get the IV, anesthesia, and two bone marrow aspirations (one in each hip).  We were told to head to the food court after she awoke, get lunch, and then have them page her oncology doc.  Faye did impressive work with her giant slice of cheese pizza and strawberry fanta after not being able to eat until the procedure was complete.

 We waited for the doc in the oncology clinic watching Despicable Me 2.  I was having such a good time with her at lunch and watching the movie that I had somewhat forgotten that sick feeling from earlier.  We saw her doc approaching and knew from the look on her face.  She put her hand on my shoulder and quietly said "It's not good." As I began to cry she then said "It's back".  There was a long silence (aside from my crying) and Faye finally asked "Why is daddy crying?"  I pulled it together momentarily so we could get her situated with a movie so we could talk at the table across the room.

Stacey had tears in her eyes but was the one keeping it together, as usual.  Her doc and another with her told us how shocked they were Faye's AML was back.  This far out with good blood counts is very unusual and rare. They told us they had many things in process and we could go home for the weekend and get started Monday.  We did our best to pull it together and go talk to Faye.  We sat by her and began to tell her that her cancer was back.  She immediately began to cry.  She looked up at us and said "I don't want to do it again." We calmed her down and she was relieved to find out she could come home for a couple days first.

Stacey drove us home and we called family telling them the news and crying a lot.  After a few calls I decided to stop and talk with Faye.  We both cheered up a bit and she said "Daddy, I wish they didn't make cancer."  I think we all agree.

We had a great weekend together hanging out, watching movies, playing games, and just trying to forget.  Some great friends helped Stacey find a photographer who was generous enough to help us get some family pictures on Saturday morning.  Our ward (local church congregation) rallied to figure out how they could help and fill any immediate needs while we were able to sit back and just be together. The only hiccup was the little boys got sick and I had to be on sick patrol while trying to keep everyone at a distance from Stacey and Faye.

Monday was a long day at the hospital.  Picc line was placed in her left arm.  Consultations with doctors.  Echo cardiogram.  More consultations with doctors.  Lot of papers to sign and disclaimers to review.  Around 5:30 or so we were finally done and just hanging out waiting for them to have a room ready over at the hospital on the oncology floor.  We sat in the clinic trying to come up with anything that would make her happy.  She was ready to lay down and zone out.  We found rows of pictures, quilts, and photographs and made a game out of guessing which was was each person's favorite.  She finally got to her room around 7.

Tuesday was the first dose of chemo via a spinal tap and the other preventative medicines.  Wednesday will begin the other chemo which will continue through the weekend.  On day 29 they will do another bone marrow biopsy to see if it is responding to the chemo.  Best case scenario is they can't see any of the AML and then we can wait for her counts to recover and head to bone marrow transplant. AML is a higher risk Leukemia with not as many good treatment options.  So her immune system will be knocked down to nothing for long stretches of time requiring her to remain hospitalized.

We hate that Faye has to do this and that her brothers have to deal with the wake it leaves behind at home.  However, we are so incredibly grateful for each of you that are concerned for her and offer kind words, support, and prayer.  We are so sorry to have to be here but so grateful we have you to lift us up and join us in calling on our Heavenly Father for His help.


 In recovery room after bone marrow biopsy.
Some of the fun papers we get to read.
 Faye getting dolled up by her mommy before pictures.  Some 'cheer her up' stuff from dad close by.
 Some one gave her a 'heart attack'
 Ready to do this!
Making a bracelet.
 Someone came by the room passing out press on nails.
 Waking up from the spinal tap.  Not happy.
 She thought it was great her nurse had the same name as mom.  Even better that she wanted to have a nail painting party.
 Purple with pink polka dots.
An old friend.  Nurse Katie used to work here but is now at another hospital.  She was nice enough to stop by and see Faye to make sure she was being taken care of. 

6 comments:

Katie Ellis said...

Love the nails Faye! You are going to beat this thing in style girl friend. Nick, you and Stacey are my heros. Your faith, love and strength are incredible. I love you so much!

Sarah said...

My sister Looli told us about your situation. We're thinking of you and praying for you here in Utah.

Holly said...

Thank you for sharing how things unfolded and allowing us on this journey with you. We love you guys! Faye and y'all are in our prayers.

Tiffany Montoya said...

Yall are such example of faith and courage. Sending prayers your way.

Cute Carbines said...

I love that she's got style no matter her situation. That's what I love about Faye, she manages to still be glamorous even when facing tough things.I love that you post things so eloquently. You should write a book. It would be very good. You really know how to "use your words" ;)

Thiago & Teri said...

Love you guys with all my heart!! In my every prayer and thought!!! Nick you are amazing...you all are. Thanks for taking such good care of our Stace and your little family. Faye is so blessed to have you two as parents. My heart is broken that you are back here in this place, fighting yet again, but you all do it with so much grace and faith. True heroes in my book. Love you guys.