Our superhero!

Our superhero!
Our superhero!

Tuesday, October 28, 2014

Updates, updates...

"You were not sent to this earth to play small; to shrink; to fail.  You were destined to make a difference."  -Anon.

August 26, 2014: " Ethan is still on dialysis, though his kidneys have made good progress. His output has doubled over the last couple of days.  That is encouraging though no word yet on when he'll be off dialysis.

"However, today, we had an ultrasound done on his kidneys and bladder as his urine is quite bloody off and on.  They found a mass on his bladder which they want to look at more closely. Right no they think it is an infection, sort of like a fungal ball or something which could have been caused by the catheter, but they aren't ruling out anything at this point.  We are meeting with urology hopefully later today to learn more.

"Poor kiddo is very homesick but is pushing along as best he can.  Keep him and the doctors in your prayers!"

From Jen, August 29, 2014: "Ethan had a bone marrow aspirate yesterday.  He has 80% leukemia in his marrow.  They think the cancer will start showing up in his blood soon.  They told us if the cancer comes back in his blood, he won't have much time left-from just a couple of days to a couple of weeks, depending on how aggressive it is.  He has to be off dialysis for three days in order to call his kidneys functioning so he can do his T-cell study.  They are worried at this point that the kidneys may not heal at all.  We are going to give it the weekend and then decide what to do.  They gave us the option of flying him home to be with us, but we aren't quite ready to give up yet.  we'll see how the weekend goes, and make some more decisions early next week.  We are praying for another miracle over the weekend, but are willing to accept whatever our Heavenly Father has in mind for both Ethan and our family."

From Merrill, September 2, 2014: "We met with  out doctor here in Seattle regarding Ethan's T-cell therapy.  She didn't say yes, didn't say no, but did say we should wait it out and see what happens to his kidney function.  So while we wait, we have decided to transfer Ethan to Primary Children's Hospital in Salt Lake.  We feel it would be better time spent there waiting than here as we'd be closer to family and friends whom we miss so much. (Ethan is excited to go back to what he is used to, the friends he's made with the staff there, and an XBox with more Lego game options, among other things.)  It will take a few days to sort out the flight home (which the hospital takes care of).

"On another twist to this, we have to still consider the mass that's in his bladder.  We aren't sure yet what that is, but when we thought Ethan had passed it, it has kept coming and in greater volume (larger and more frequent blood clots passing with the urine, which has been bloody all day).  The thought is now that it may indeed be a tumor but we're waiting for confirmation on the ultrasound we had done today.  If it is a tumor, we're not sure what impact that will have on his treatments going forward.

"Ethan has been generally in good spirits and has taken an interest in doing things again, which is good.  However, he still sleeps a lot.  We've only had pain meds 3x in the last several days.  The doctors and nurses think he needs to be on a scheduled infusion of pain meds, but if an ice pack and stretches work, why medicate?  They have been truly supportive here and have done a good job to get Ethan to this point.  It's essentially up to Ethan's body now,  It's been through a lot.  The question now becomes whether or not Ethan's body has enough drive left to recover even with a lot of disease still in it.  He's been able to do it before several times but even the best runners get tired if they are pushed too far.  The disease is stronger now than it has been so recovery is much more difficult over time.  Could his little body recover?  Yes-nobody has ruled that out but with each passing day, it becomes more and more unlikely it will have time to recover the kidney function before the cancer completely takes over.  We just have to wait and see.

"It's difficult to leave Seattle knowing there is a real possibility we won't make it back for the therapy we hoped to receive while we were here.  Some might say we are leaving empty-handed or that we are giving up.  I think neither.  We are leaving Seattle with a more intimate view of the fragility of mortality, a stronger relationship with Heavenly Father and much more faith in Him, and a deeper love for friends and family.  Any way this journey ends up for him we are confident it is part of the mind and will of Heavenly Father who has a specific plan for Ethan.  We have new perspectives on what it means to have faith, to endure to the end, to have patience, the importance of covenants kept including the importance of honoring the Priesthood, the value of family, serving others and allowing others to serve us, and how important it is to have the Savior Jesus Christ as a part of our lives.  Thank you all for your continued love, prayers, faith, and support!"

September 2, 2014: "So today, my favorite scripture is one that I read today, in fact, and one that I needed to read today.

"Recently I was given a Priesthood blessing where I was told that my understanding of the Plan of Salvation would be magnified.  Oddly enough I was led to read from the book of Revelation in the New Testament.  As I have been studying, I actually have learned a lot about the Plan of Salvation, specifically of the role of Christ in that plan...in what specific role he has in the events of the world leading up to His Second Coming.  There isn't room enough to write here what I have learned from my studies so far, but there is a verse that had an impact on me and who I want to become and how I want to utilize the Savior's atoning sacrifice.

"Revelation 7:13-17
    13 And one of the elders answered, saying unto me, What are those which are arrayed in white robes? and whence came they?
    14 And I said unto him, Sir, thou knowest.  And he said unto me, These are they which came out of great tribulation, and have washed their robes, and made them white in the blood of the Lamb.
    15 Therefore are they before the throne of God, and serve him day and night in his temple: and he that sitteth on the throne shall dwell among them.
    16 They shall hunger no more, neither thirst any more; neither shall the sun light on them, nor any heat.
    17 For the Lamb which is in the midst of the throne shall feed them, and shall lead them unto living fountains of waters: and God shall wipe away all tears from their eyes.

"This scripture very closely parallels another scripture which has been one I have loved for a long time found in the Book of Mormon:

1 Nephi 21:15-16:
    15 For can a woman forget her sucking child, that she should not have compassion on the son of her womb? Yea, they may forget, yet I will not forget thee, O house of Israel.
    16 Behold, I have graven thee upon the palms of my hands; thy walls are continually before me.

"I know the Atonement of Jesus Christ is real.  I feel how it helps me day by day.  I know that because of Him, I can meet my full potential, returning to live with God again, so long as I exercise faith, repent, and do my part to keep God's commandments every day.  Never in my life have i felt more compelled to stay the course than I do now.  never in my life have I felt the yearning in my soul for the companionship of the Holy Ghost.  Never before have I felt the same level of gratitude for God's gift to mortal man, even His Only Begotten Son. And because Jesus lives, so will I, and each of us.  When i look at the eternal scheme of things, I see our challenges as stepping stones to help us learn what we must if we are to become like God.  Without opposition there some no strength nor growth.  If we are to be exalted, we must be tested so that we can grow.  But god won't have us grow alone.  That's why we have our Savior, because God knows we are imperfect and incapable of growing to our full potential without help.  How grateful I am for the wisdom of a loving Father in Heaven who knows each of us so well, that whatever we face in life is ultimately to bring us home to Him, and be happy eternally with Him, where He will literally wipe away all our tears."

From Jen, September 3, 2014: "I have many scriptures that I love, but one in particular has brought me a lot of comfort through many of the trials I have had in my life.  It is Doctrine and Covenants 58:3-5.

    3 Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter, and the glory which shall follow after much tribulation.
    4 For after much tribulation come the blessings.  Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but is nigh at hand.
    5 Remember this, which I tell you before, that you may lay it to heart, and receive that which is to follow.

"I love this because it shows that even though life is hard, our Heavenly Father is aware of us, and we will find much happiness when we have borne our trials, and proven ourselves.  i also love that it says to "lay it to heart and receive that which is to follow."  In  my thoughts, that means that we need to not worry about what is going to happen, we just need to bear our burdens with patience, and just know that in the end, it will all be taken care of."

After returning home from Seattle, Jen resumed the majority of the posting duties.

September 14, 2014: "We made it home!  The bleeding seems to have stopped.  Hopefully it won't start again with dialysis tomorrow, as they never really figured out what was causing it, but for now, home is wonderful!"

September 25, 2014: "Just wanted to give an update on Ethan.  Sorry for the long post!

"We went to clinic and dialysis yesterday.  From the oncology side, we were told that even if Ethan's kidneys do begin to function, we would need to sit down and weigh our options as far as going back to Seattle to be treated.  They are not confident the T-cells will work, and they are worried that if they do work, they will send him into another tailspin, compromising the quality of life he has left.  There is always the small chance it will work, though, and that all will be fine, but those are options that we need to weigh, and we will need to talk with the doctors both here and in Seattle to get the full picture.  We have some big decisions ahead of us.  If his kidneys end up not recovering, the T-cells are not an option.

"From the nephrology side with his kidneys, we were told that if his kidneys are not recovered within 12 weeks of them shutting down, that they will consider it a chronic condition, and it is very unlikely they will recover at all.  It has been 7 1/2 weeks already, so we have 4 1/2 until they consider them chronic.  It seems like they are slowly recovering, and his counts are doing much better, but it has been a slow process.  They talked yesterday of decreasing dialysis though, because they don't feel like he needs it as often or as long as he is getting it now, so that is good news.

"As far as how Ethan is doing, he is getting stronger and stronger every day.  He can now walk if he is holding onto something, and was able to get off the couch and sit on the floor with Blake all by himself, and help him count the ladybugs in his '10 Little Ladybugs' book.  He is happy for the most part, and has a lot more energy than he has had for a long time, as well as a sense of humor again-as shown by the picture of him wearing the throw up bags on his feet. :)  He is nauseated a lot and throws up anywhere from 3-6 times a day, but when he is finished, he just acts like nothing happened and moves on.  He is such an example to me of dealing with his trials with a positive attitude.

"While we realize the odds are stacked against us, we have seen miracles and don't doubt that our Heavenly Father could produce yet another miracle for us.  If that is not His will, we are grateful for this extra time that we have had to spend with our sweet Ethan, and together as a family.  We are so grateful to our amazing family, friends, and neighbors who have been such an amazing support to us.  I sincerely don't know how we could do this with out them.  Most of all, we are grateful for the gospel, and our Heavenly Father and Savior, who have helped us feel strength and peace during this difficult time."

October 9, 2014: Today, Ethan got to do a photo shoot with Batman!!  He wants to be Batman and a doctor!  According to Brayden's post, "He was super shy and afraid of new people, but they still got some good pictures. :) "

October 15, 2014: By this time, the cancer had come back and there was nothing more the doctors could do.  Instead of despair or sorrow, Merrill and Jen decided to make the most of the time they had left with Ethan, celebrating Halloween, his 5th Birthday, Christmas Eve, and Christmas all the same week.  They posted some fantastic family pictures taken by Holly's Hobby's at the Oquirrh Mountain Temple, close to where they live.  They have taken most of their family pictures at this temple and the significance and sweetness of such a tradition is clearly evident in the joy and love on every face.  The children are holding hands in some pictures, and the love this family has for one another is so abundant.  When the photographer posted a lovely black and white of Merrill, Ethan, and Jen, she captioned it, "I am a child of God, and he has sent me here, has given me an earthly home, with parents kind and dear..."

From Merrill, October 17, 2014: "Wow- this was a nice surprise! We are celebrating Christmas a little early this year so that Ethan can enjoy his favorite holiday!  That smile on his face says it all- very delighted! Thanks to our little elf friends who did all this!"

At this point in time, many people began to get into the holiday spirit, and posting their love and miracles:

From Michelle Nye: "The most amazing thing just happened.  I went to Home Depot to get clips to hang up Christmas lights for Ethan and when I told the worker that was helping me the story about Ethan, she gave me $50 worth of lights free for him.  Thank you so much home Depot."

From Shersten Buchholzer: "KSL News is doing a special on Ethan, his fabulous family, and wonderful ward this week!!!  They will be doing live video each night at 6 pm this week, tonight through Friday.  They will have the opportunity to celebrate Halloween, Ethan's birthday, and Christmas with the family.  If you would like to join in the fun and experience a little bit of the magic of friendship with this amazing family be sure to watch KSL News every night this week. :)... Turn your Christmas lights on this Friday for the fun festivities!!!! :) "

From the first night Ethan's story was broadcast, it touched the hearts of everyone watching. It went from trick-or-treating with a few pre-warned friends and a news team, to a whole parade of local police, mascots, and dozens more people for his birthday, to being broadcast on the Today Show.  The outpouring of love  and friendship the ward and community have displayed inspired others to join in and add their own goodness to the celebrations.  

From Merrill, October 23, 2014: "Words do not adequately describe how grateful we are for all the love and support we have received.  We have had such an outpouring of offers to help which is truly amazing.  Jen and I thought that for those who would like to participate in the celebrations with us but aren't able to be here in person for whatever reason can still contribute via social media by submitting your holiday wishes, pictures of your Christmas lights, video of Christmas carols you and your family and/or friends sing or perform, etc. Ethan loves Christmas music and Christmas lights and would love to hear from you! Thanks again for helping make this week extra special for Ethan!  He really is loving the festivities and looking forward to all the fun things planned.

"We are grateful, too, for a loving Father in Heaven who has blessed us beyond what we could ever imagine! God bless you all for your kindness, your thoughtfulness, your prayers, your faith."

From Brayden, October 23, 2014: "Thanks to everyone are West Hills Middle School who wrote a card for my brother, Ethan.  A big box showed up at our house and it was full of awesome cards from everyone there."

On Saturday, October 25, 2014, after opening presents and enjoying all of the many, MANY presents brought from well-wishers, family, and friends, Ethan began running a very high temperature of over 104.  He began sleeping even more and needing hourly doses of Oxycodon and Valium to ease pain and anxiety.  He woke up as much as seven times a night, sometimes for meds, sometimes for just a hug and some reassurance from Mom and Dad.  

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