Our superhero!

Our superhero!
Our superhero!

Tuesday, October 28, 2014

Full Circle

From Merrill, October 28, 2014: " To all our dear friends, our little Ethan passed away this morning at 10:20 a.m.  We are so grateful that each of you has helped in some way along this journey.  Ethan is at peace now and will no longer battle with disease.  He has passed his mortal test and will return to live with Heavenly Father for eternity.  How grateful we are for the Atonement of Jesus Christ who makes this possible.  We are grateful for inspired Church leaders who have provided words of comfort during the process.

"How grateful we are for having him in our family for these few years...God bless you all!  you each have a special place in our hearts for all the good you do!"

From Jen, October 28, 2014: " Our sweet Ethan passed away this morning at 10:20.  We are so grateful for the blessing he has been to us in his short life, and the impact he was able to make on many people.  We are so grateful for the support we have received, and the blessing all of you have been to our family.  We are picturing Ethan happy and at peace.  We are so grateful for the blessing of being a forever family, and look forward to the day when we can be with him again.  Until then, rest in peace, sweet Ethan. <3 "

Ethan was blessed to be born into this family, to these parents with him as he entered and as he left this earth.  His life, though short and wrought with the pain of this terrible disease, was full of incredible love.  He brought a family together, a ward, a community, and countless others.  Thank you, Ethan, for bringing us together.

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.  

Monday, October 27, 2014

Continued Summer Update...

"Faith in God includes faith in His timing." - Elder Neal A. Maxwell

August 14, 2014: "Ethan's treatment has made another little milestone or two.  He gets to come off the IV nutrition today as his ng tube is now pushing food into his tummy at a full rate (though as I write this, he just threw up so we'll see).  He also gets to come off the CRRT machine, which is the one that is doing his dialysis 24/7.  Instead of the CRRT, he'll move to what's called hemo-dialysis or intermittent dialysis.  That runs 4-6 hours daily instead of all day.  Ethan will be grateful to have the additional mobility and not be hooked up all day as the tube does come out of his neck.

"Apart from being nauseous today, he's doing well.  If he does well on the intermittent dialysis, we will get to leave the ICU in a couple of days and move to another inpatient room to prep for his T-cells.

"Grateful for progress! Always grateful!"

How far would you go to serve someone you've never met?

August 17, 2014: "Another day at the hospital.  We are grateful to not be in the ICU anymore.  Ethan is starting to sleep better, too.  This picture is what Ethan is like much of the time he's awake (sorry, but it is a sweet picture; he's a bit glazed though).  His neurological function was hit hard during his stint in the ICU and has had some trouble comprehending everything around him.  The doctors are saying this is completely normal and should improve in a few days.  For example, last night he was screaming that he hurt.  When I asked him what hurt he said, 'I don't know.' He is also constantly saying he is cold, needs his blankets on even when they are on, complains of itching all over and reaching for things he shouldn't (most specifically his ng tube).  Looking forward to the delirium to be over.

"On another note, kidney function is improving as expected.  Any day now we are expecting his kidneys to start working.  When that happens, he'll have to go a lot and in larger than normal amounts for a few days.  Once this starts, they'll monitor everything and he could be off dialysis within three days of kidney function.

"Jen and Blake went home today so it's me and Ethan for a little while.  It was nice to have them here for a few weeks.  We are going to miss them.  We already miss the other kids lots.  Hopefully we'll be able to come home in a few weeks, too!

"I will say, if anyone needs directions around Seattle Children's Hospital, I can give you a complete guided tour. ;) "

August 19, 2014: "We had a few milestones made again today (Monday), a couple I am very excited to share: 1.) ng tube & neurological; 2.) Renal or kidneys.

"1.) Ethan is very annoyed with his ng tube.  So annoyed that even with arm restraints, he's finding a way to either pull the restraints off or manipulate them enough to allow for enough bend in his arm to hook a finger in the tube and pull it out.

"Switching to neurological progress, Ethan began to respond more normally to questions and actually started to converse.  We had a mini FHE (Family Home Evening) where we briefly talked about the power of prayer and the Atonement of Christ.  I learned tonight that the last several days he's been having very strong and unpleasant memories come to his mind from when he was in the ICU.  We reviewed that Jesus could help comfort him when he had those bad thoughts and feelings come.  We said a prayer together and he seemed ok after that.  Our activity for FHE was watching 'Cloudy with a Chance of Meatballs'. He hates movies but watched it anyway.

"Back to food.  Ethan and I also talked about this ng tube and that he needs to eat in order to get it out.  What a strong motivator that was.  He then asked for Carnation Instant Breakfast and downed two swallows!  For him this is outstanding progress.

"2.) Renal function is still improving.  So much so , we get to skip dialysis tomorrow (Tuesday) as his urination has improved a lot since dialysis on Sunday and his levels are fairly balanced.  They will skip Tuesday dialysis to see how his kidneys respond.  But, even throughout the day today, urine output has been greater, though not as much as he needs to be completely off dialysis.

"Thanks everyone for your faith and prayers.  I hope that you feel the blessings of heaven as we are constantly giving thanks to God for you good people who support us. :) "

August 20, 2014: "Ethan still has to do dialysis for a while.  The kidney doctors said he is making lots of progress but his kidneys just aren't ready to handle everything on their own just yet.  So dialysis 4x per week, here we come!  That's the plan right now, anyway.  If his kidneys recover sooner then obviously they will take him off sooner.  We don't know yet how this plan will affect his ability to get his T-cells or the complications he'll experience with potential blasts returning.  But we DO know that God knows what's best for each of us and we have to put our trust in Him.  This is, after all, His work and His glory 'to bring to pass the immortality and eternal life of man' (Moses 1:39)."

August 21, 2014: "Ethan [is] enjoying a sucker after eating some food.  We were blessed to have a day off from the ng tube, but he has to eat now.  He's a lot more content this way. He'll still need to do the ng tube starting tomorrow but at intervals instead of all day. :)"

From Jen to Merrill, August 23, 2014: "Some encouraging words from Elder Packer.  I love you and appreciate so much what a wonderful husband and father you are, and the compassion and strength you show as you take care of Ethan day in and day out.  You are truly the best!

'You parents and you families whose lives must be reordered because of a handicapped one, who resources and time must be devoted to them, are special heroes.  You are manifesting the works of God with every thought, with every gesture of tenderness and care you extend to the handicapped loved one.  Never mind the tears nor the hours of regret and discouragement; never mind the times when you feel you cannot stand another day of what is required.  You are living the principles of the gospel of Jesus Christ in exceptional purity. And you perfect yourselves in the process.'"

From Merrill to Jen, August 24, 2014: "My sweet wife...thank you for sharing that.  It was much needed after a hard past few weeks and a very frustrating day.  I am so grateful for you and all the goodness you bring to our marriage and family.  God bless you! :) "

Update, Part 2

"...[W]hen Jesus had thus spoken, he cast his eyes round about...and behold, they were in tears, and did look steadfastly upon him as if they would ask him to tarry a little longer with them."  3 Nephi 17:5

The following posts are updates since June 24, 2014 on Ethan's journey. Merrill and Ethan were up in Seattle while Jen and the children were at home.  

June 27, 2014: "Looks like we get to stay at the hospital until infusion.  Since Ethan has been having daily fevers and his immune counts are low, the doctors think it would be better to stay to monitor him more closely and prevent infection, which makes sense.  This actually works out because it saves us $1K in hotel costs and the hassle of moving everything back and forth."

July 1, 2014: "Ethan is getting his 'killer' T-cells today. Round one is done! We're ready for round two, then we wait and see what happens. So far, so good. :)"

July 2, 2014: "So far, so good with Ethan. He was full of giggles tonight. It was sure fun to see that :) Round 2 went good, by the way."

July 2, 2014: "Merrill too the other kids to the zoo and sailing today (all courtesy of the Ronald McDonald House-so amazing!) and I got to hang out with Ethan! He is feeling good, so we are making funny faces :) He will probably start feeling sick in a few days, so we are making the most of feeling good!"

July 4, 2014: "After finishing Lego Indiana Jones on XBox yesterday, we've begun another adventure together- Lego Star Wars on Wii!

"Ethan's immune counts are coming up (his ANC was at 201 this morning)! This is a good sign because it means that the likelihood is good that the engineered T-cells he received on Tuesday are starting to do their thing. We won't really know for sure for a few weeks, but from what the doctors can tell, he's following the plan. We should expect him to get a high fever in the next couple of days (which is a good thing so long as it goes away after a few days)."

July 10, 2014: "Ethan had a few 'warmness' episodes yesterday with the greatest being a temp of only 100.7... They want to see a temperature of 100.9 for it to 'count' as a fever. Sooooooo close! They said late last night that it would be a gradual process as far as the fevers go. he does have a small number of T-cells present in his bone marrow, which is good- they need to start multiplying and destroying in there and we'll be in good shape.

"He [is] making some strides though with eating- ate some Gerber's peaches and some juicy watermelon (yum!) yesterday. We are currently working with Nutrition to get a more meaningful and caloric diet from him. So, for lunch today, he ordered a chocolate milkshake with a vitamin/protein boost. :) We'll see how well he likes it. I'm thinking that the parents should get complimentary smoothies, too!"

July 15, 2014: "Ethan had clinic today. All his levels are starting to balance out, which is good. We had a blood test today to see whether his T-cells are even there at all anymore. There is a small chance that it could still work. However, in the event it doesn't, the research team started yesterday regrowing another batch. The difference this time [is] that they will be more aggressive with the T-cell growth and try harder to force it.  They believe that it will be more effective in the long-run like it was last time with the helper T-cells (if you remember they grow killer T-cells and helper T-cells. Last time, Ethan's helper T-cells didn't grow very well.  When they changed to a more aggressive growth cycle, they grew much better.)

"They are also going to give him another chemo beforehand.  The other chemo they used has never been used prior to this infusion before (it was used on Ethan b/c they believed he had a bad reaction to the last dose of chemo before coming to Seattle).  Since it didn't work, they are going back to what they know and hope he doesn't get too sick from it.  The new cells should be ready in about three weeks.  Chemo will start about four days prior to infusion.

"As for now, he's been sleeping more than normal and eating less than normal- perhaps the two are related... Though, once he feels up to it, Dad is taking him to get a special treat at his favorite store (and Dad's favorite store): the Lego Store!! :)"

"The dates they are aiming for is August 1st to start the chemo, and August 5th to infuse the T-cells.  Then we play the waiting game again.  As for now, we are all trying to have a positive attitude, and have faith in Heavenly Father's plan for Ethan.  I am so grateful for the amazing people around us who help in every way.  I am amazed at the love and generosity that we have been shown by so many people.  I am truly overwhelmed and my heart is full. <3"

July 18, 2014: "After 5 hours in the ER, Ethan was finally admitted last night after having a fever of 101.5 and complaining of pain off and on in his shoulders and legs.  He's had three more fevers that high or higher since then and we managed to stump the doctors in the process (go us).

"The exact cause of the fevers is still under debate and may be so for a few days still.  What they are looking at is whether he has a bacterial infection (which so far, all tests are negative), a viral infection (but he doesn't have the right symptoms), it could be his leukemia coming back (but it's inconsistent symptoms), or it could be a late showing of his killer T-cells (which they were initially ruling out out because of the timing- now they are reconsidering this as a possibility).  If it is his killer T-cells, his case would by far be the latest symptom onset they have ever seen.  We won't know for sure if that's the case until probably Wednesday when he gets his bone marrow checked; unless there is strong evidence in a blood test in the next day or so.  In the event it's not his original crop of killer T-cells, the researchers have another prized crop in development as of last Monday.  That batch probably won't be ready until early August.

"Through all of this, Ethan has still managed to engage the nurses in lengthy discussions including how strong a fighter Darth Maul is, to how cool it would be to have a hoodie that makes you look like R2-D2, or about the various Lego sets he likes.  Oh, and also all his favorite Mickey Mouse Clubhouse episodes.

"We are so thankful for your faith and prayers on our behalf! We feel truly blessed to have the strength you have given to us to help us get through this.  May the Lord bless you for all [that] you, our dear friends, have done for us.  Whatever the outcome, the Lord's hand is in our lives."

July 22, 2014: "The doctors are still a little perplexed at what's happening with Ethan.  He went fever free for almost 48 hours, then got another one late this afternoon that went away without any meds.  One thing that has them perplexed as of earlier this afternoon is edema, a swelling of the soft tissues in the body.  Edema can be caused by excessive fluid intake.  It can also be a cause from the 'storm' we've been waiting for.  It could also be a sign of something else which could or could not be severe.

"He's also been sleeping a lot over the past few days (as much as 20 hours). One thing they asked me to do is to monitor his breathing.  If it becomes labored, it could be serious and require a move to the ICU.  So far, he is breathing fine.  But, if it is the 'storm', labored breathing is a symptom along with a decrease in blood pressure (like 80's over low 50's or 40's).

"We have a bone marrow aspirate tomorrow to find out what is going on in his bone marrow.  This could also reveal what is happening with his T-cells.  the research team is still growing another batch of killer T-cells.  Once those are ready, the plan is start the chemo and then infuse those T-cells four days later.  That could potentially start as early as next week Thursday.  We'll see.  As I now can witness, medicine really is a practice. :)

"Thanks again for all your support, faith and prayers!"

July 23, 2014: "Ethan has a bone marrow aspirate today.  It ended up being a biopsy because they couldn't get any marrow out- it was pretty packed in there, tightly like chalk. Likely, it's an indicator that his leukemia has completely taken over again and that the killer T-cells he was infused with two weeks ago are no longer there. But, that's my speculation- results to come either tomorrow or Friday.

"On the up side, they may let us be discharged today so that we can work on Ethan's eating.  Ethan has promised he'd eat better out of the hospital, so we'll see.  He has to input a lot of protein to counteract the edema (swelling).  Good that he usually likes dairy (ie: milk), but bad because he only like dairy.  Let's just say, Ethan is very anxious to leave the hospital (I'll admit, I am too- this time it's been hard on both of us).

"As far as we know, the other batch of T-cells is still developing- hope they are ready by next week and hope they really do a killer job this time to his cancer!

"Keep the faith and press on!"

July 28, 2014: "Ethan is starting to feel a little better.  His swelling has gone down, but there is still some residual.  He still can't stand or walk but[he] is more alert and awake.  He's also start[ed] eating and drinking again a few days ago.  That has gone lots better as he's being threatened with an ng (feeding) tube, something he really doesn't want.  We kind of think it's standard procedure around here because so many kids in hematology/oncology here have them, even when they eat cheeseburgers and fries for dinner, or a package of baby food and formula for lunch.

""When Ethan is getting an ivig (immunoglobulin) infusion today, the doctor came in with great news: Ethan's T-cells will be ready and will be frozen tomorrow!  He will have a couple clinic visits between now and Saturday to prepare for chemo (Cytoxin) starting on Saturday and going through Sunday.  His second T-cell infusion will happen on August 7th.  We are very happy about the improved time-frame and hope this works better.  The doctor seems pretty optimistic about the progress of his cells, which is a strong indicator of how they will actually perform.  However, as we have learned in the past, the practice of medicine, especially with studies and research, is just that: practice, with no guarantee beforehand [that] it will work until it's determined after the fact [if] it does or doesn't work.  But we can be hopeful!  Thanks again for all your continued love and support, and faith and prayers. :)

On Sunday, August 3, 2014, things took a dramatic turn for the worse.  Ethan's little body, overwhelmed with all that was going on inside of him was starting to shut down. In heart-wrenching phone calls, Merrill let the family know that Ethan probably would not make it through the night. Jen and the kids made it up there in record time to say what they thought were their last good-byes. Merrill's parents and one sister also raced up.  As they rallied around Ethan and each other, talking to him and loving him, his little body found strength to slowly improve, though damage had been done.  Hooked up to dozens of machines performing every basic function from breathing to dialysis, his prognosis was still quite grim. 

August 4, 2014: "Ethan made it through the night.  He has had some ups and downs.  While some things are looking better, like his breathing (of course, he's got a machine doing that for him), his kidneys are in bad shape.  They are going to do dialysis this morning to allow his kidneys a break and see if they can stabilize everything.

"The doctor over the T-cell study came by and said that if they can stabilize him, they still plan on doing the T-cell infusion on Friday.  Since the T-cells are frozen, they really can do the infusion whenever they want after Thursday; the chemo lasts about three weeks.  We'll see what happens.

"How I love my little man!  He 's much stronger than I.  He is my hero.  It's hard to see him go through all this but, there is a purpose to life.  Each of our lives.  When you start to commune with God about it, he reveals that purpose little by little as we come to him through prayer and faith.  He sends so many people to you to lift you up and help you.  I'm reminded of the Children of Israel when they were plagued with the poisonous serpents.  Moses was commanded to make a staff with a brazen serpent on it and hold it up.  Whoever looked would be instantly healed of their snake bite.  All they had to do was look.  So many of them could not because it was too easy.  That's true with us.  The gospel can be really easy. It's easy to live, but the world makes us think that we can't lift up our head and look.  Ethan has taught me to trust more in God and lean more on the Atonement of Christ.  Because of this Atonement all may be healed of whatever affliction or infirmity we may have, if we have faith and repent and keep God's commandments."

August 5, 2014:  "Ethan, I think, is still listed (at least in my book) in critical condition.  The doctors tonight are not sure exactly what is causing this odd set of severe symptoms.  The tumor lysis (cancer cell breakdown) should have released potassium in large amounts into his blood stream, but that didn't happen.

"Their thoughts are that either he has an infection somewhere that they can't seem to find, or the leukemia caused severe damage to his blood vessels, among a number of other things.  It's a major catch-22 because they need to do the T-cell therapy to make him better, but they can't give it [to] him right now without making the problem worse.  If it is determined to be an infection, they still have to find it, then they can target it and move forward.  If it's the leukemia, unfortunately, there isn't much they can do.

"Some positives from the day"
    1.) They took Ethan off of one his blood pressure meds and his blood pressure is stable;
    2.) The dialysis is starting to pull more fluids out, and they can increase that with having      taken him off a med;
    3.) He seemed much more alert to his surroundings today, moving a little bit and getting agitated with all that he's hooked up to;
    4.) Some of his edema (swelling) has gone down in his feet;
    5.) His blast count this morning was in the 150's down from 17,700 on Saturday;
    6.) It was so nice to have the kids and my dear sweet wife here.  It's been a joyful time with them.  They are all so strong.  I'm blessed to have each of them in my life.
    7.) We have a wonderful support group of family and friends who have given so much support and have prayed so hard- it hasn't gone unnoticed.  I know the Lord will bless you for all each of you has done, big or small, to support us.

"Your prayers, faith, words of encouragement, and support have blessed our lives so much.  Words cannot describe the tender mercies and miracles we have witnessed, I think in large part because of your faith and prayers in our behalf, especially for Ethan.  While we are uncertain which direction he'll go, I know that his life had had a greater purpose than we realize.  God has a special plan for him.  Whether that plan extends in mortality or beyond the veil is yet to be known, I thank Ethan for making the choice to come here.  I'm a much stronger, more spiritual, all around better person because of him. :) "

Jen's Post:
"They still aren't sure what is causing him to retain fluids.  Hopefully they will be able to give us some answers in the next day or two.  As for now, we are just enjoying our family, and celebrating the small things along the way." 

August 7, 2014: "Just when all seems to be going right, challenges often come in multiple doses applied simultaneously.  When those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more.  He therefore gives you experiences that stimulate growth, understanding, and compassion which polish you for your everlasting benefit."  Elder Richard G. Scott

"Ethan got a fun visit from Jared Smith from the Seattle Seahawks, and Brianna, who is Miss Washington.  Ethan even woke up to say hi to them :) "

August 11, 2014: " Ethan has made more progress over the weekend.  They have successfully removed all the excess fluids (it ended up being close to 5 liters) and he still is slightly edemic in a spot or two but looks great!  He should be coming off dialysis sometime this week.  This morning he did have some urine output.  They suspect his kidneys may be healed, but don't know for sure until he comes off dialysis.  Should his kidneys work the way they are hoping he should get his T-cell therapy late this week or sometime next week!

"He's still a bit groggy and sleepy, but is generally ok.  They did give him an ng tube to get his digestive tract back on track.  He's been super sneaky and slipped it out twice already! He now has restraints on his arms to prevent that from happening again.  All in all, we are pleased with his progress. :) He still has quite a ways to go, though.  Press on!

"Many thanks to the skilled staff here- they are truly gifted in their field and top of their game.  We are blessed to have such a talented group of doctors and nurses who have done so much to help him get this far.  Many thanks for your continued faith and prayers.  We wouldn't be here without the strength we have received from our Father in Heaven or from the love and support so many have rendered.  God bless you all! :) "

Updates from the last few months...

"It is no small thing when they, who are so fresh from God, love us." -Hans Christian Andersen

I love Ethan. I love his family. I also love his ward and neighborhood.  I am one of his aunts, Julie (hacking Jen's account with her graceful permission), and I have the honor of going through all the posts from over the summer to update this blog.  To relive this by retracing the posts from Jen and from Merrill has been bittersweet.  I am so thankful to have been even a small part of his extraordinary life.  It has given so many of us a window into the souls of him and those of his family, and that has changed us all for the better.  Merrill is my big brother, and one that I have always looked up to for what is right and good.  Every time I have had a problem, Merrill comes quietly and gives me a scripture, a hymn, and the words of modern prophets.  That sense of perspective has permeated this experience for me, and for so many who have had the opportunity to get a window into this experience.

One time, during a recent relapse, I sent Merrill a text and told him I wished I could have the ability to take this all away from them; that I could wrap them in a warm fuzzy blanket and make everything all better.  Merrill responded, "I do too, but Someone has already done that for us."  At first I felt a little less than smart, but I realized he was not saying this to make me feel bad, but to give me perspective.  The desperate feelings that I had to remove this burden from them is not unlike what the Savior must have felt for each of us as He went through Gethsemane.  His desperation to save us from all the injustices, infirmities, and limitations of mortality must have been a driving force to accept the will of the Father and continue, performing the supreme act of love for all humankind, the incomparable Atonement.  It is in this that we have our strength, our hope, and our purpose to endure with Him by our sides.  We have the incredible examples of these kind friends, neighbors, and family that shows us how He would have us live and love each other.  May we always remember the impact this family and this amazing little boy have had on us, how they have brought out the best in so many, and touched so many more.  Well done, Ethan.  

Sunday, June 22, 2014

Counted blessings

We have had quite the crazy month at our house! Ethan made it home from Seattle, where they extracted his t cells. During that month, we had everyone in our household get hand, foot and mouth disease. It landed Ethan in the hospital for about a week. Along with the illness, or daughter, Makayla, fell off of the swing in our backyard, and broke BOTH of her wrists. Our basement flooded, and we had to replace our carpet. We got our new carpet in on Thursday, and left for Seattle on Friday, but only after our car broke down.

Now, I have often said that when we have trials, our blessings outweigh our trials. We have truly been blessed in all of this. Makayla didn't have to have surgery on a wrist that was in question. We have had some amazing fundraisers that people have done for us. We had family and friends jump in to help us clear out our basement for the new carpet. Another neighbor hauled away the old carpet and a bunch of trash. The local football team came early Friday morning after practice hauled all of our stuff back into our basement. Merrill's dad let us borrow his car for a month while we are in Seattle because our car is in the shop and wasn't ready in time. With all of this help, I can honestly say that we have not had to ask for one ounce of it. All of it has been offered voluntarily and without us asking a single person. I have learned so much of charity, love, and compassion. I can also see that our Heavenly Father loves us and is here for us. We have truly been blessed.

Ethan will start his clinical trial tomorrow. He will do a bone marrow aspirate, a lumbar puncture, and a consult with the doctor. Tuesday he will be admitted for five days of chemo to make room for the new t cells. On Tuesday, July 1st, he will have the altered cells infused. We are praying and hoping for good results. We believe that miracles can and do happen, but we also know that they are only according to our Heavenly Father's will. We do, however, know that he is with us and that we will continue to find the blessings that are very much readily available to us. For this and many other things, we are grateful.

Tuesday, May 20, 2014

Our last hope for a cure

It has been way too long since I have updated, and way too much has happened, so I will just give a brief overview of our last few months.

Ethan was doing well until the last few weeks of March. We went in for our normal clinic visit, and Ethan had had a cough. They did a viral panel, and figured out that he had RSV. He was admitted to the hospital that night. A few day later, Merrill called me from the hospital and asked if I could talk. He informed me that Ethan's cancer was back. He had relapsed again.

A few days later, the doctors sat us down and we were asked if we wanted to continue the fight, or just make Ethan comfortable until he passed. We of course said we would like to continue, as long as there was a viable option. After some scares of some of our options of not qualifiing for some clinical trials, we were able to get on the same study he did before transplant on a compassionate basis. It looked promising at first. He started to feel better, and the leukemia in his blood disappeared. However, after his month of being on it, he was still at 46% leukemia in his bone marrow. Our final option was to do a clinical trial in Seattle.

This trial is fairly new. It was first done in pediatrics 2 years ago. Ethan is in a phase 1 part of the trial where they are testing it in kids after a bone marrow transplant. For this study, they pull out the t cells, and infect them with a disabled HIV virus. They then multiply the altered t cells in a lab. After 3-6 weeks, they will put the altered t cells back in, and they will then target the b cells, which is where Ethan' s cancer is. It is all very fascinating. Ethan has qualified for the study, and is in Seattle now. He will have his t cells harvested on Thursday.

We have been told by our doctors that this is a long shot. They used the term "hail Mary" to describe it.  We are hopeful that this will work for him. We are so grateful for the chance to try this to at least give us an option and one more shot.

We don't know what the future holds. We don't know how all of this will turn out, but we do have faith in our Heavenly Father. We know that he is mindful of us, and our situation, and that whatever happens, He will help us through it. We have seen His hand in things throughout this whole process. We have seen His tender mercies in every nook and crevice. We are grateful for those who are helping us and being His hands.

I mentioned a few weeks ago in our church class, that while we have not seen our big miracle yet of Ethan being cured, we have seen many, many miracles along the way. More than we can count, and probably more than we have even seen or realized. I am so grateful for those miracles. I am so grateful for a LOVING Heavenly Father. I am grateful for the things we have learned and the compassion we have gained throughout this process. It has been an amazing journey.

Wednesday, February 26, 2014

Learning to adjust to being home

While I am grateful beyond words to be home, it has taken quite the adjustment to get into the swing of things.  Then just when you feel like you are on top of it, meds change, or we have a busy couple of days with "normal" life, and get behind on cleaning.  I would rather clean my house 1000 times over just to be home though.

Right now, Ethan's list of medicine is large.  He has Septra (antibiotic), ursodiol (to protect his liver), omeprozole (to protect his stomach), fluconazole (anti-fungal), acyclovir (anti-viral), cyclosporine (to help prevent graft vs host disease), leucovorin (to help restore healthy cells), megestrol (appetite stimulant), benadryl, zofran, lorazepam, and promethazine (all as needed for nausea), and oxycodone (as needed for pain).

It takes us about 3 hours in the morning to get all of his medication down, and we are down to about 1 hour at night (HOORAY)!

Also, he has been doing IV nutrition at night.  It runs for 12 hours each night.  It is over a liter that runs into him, so he has been up every 2-3 hours each night going to the bathroom.  He is unable to get there by himself because he is hooked up to the IV, and his energy level isn't super high.  So we have been up with him.  It is almost like having a newborn!


Jerin has been our little nurse in training, and has really like to be a part of all of Ethan's care.  He can hook up the IV bag all by himself (with supervision, of course)!  



Ethan got taken off of IV nutrition yesterday.  Last night was his last night of doing it.  Now we do these little magnesium balls for only 1 hour each night.  I am hoping that now we will be able to get some sleep without so many potty breaks in the night!
 


This is Ethan's central line.  This is where he gets all of his IV treatments.  This is also where they administered chemo, do blood transfusions, blood draws, etc.  Almost everything can be done through his central line.  He has had this since July.  Before that, he had a port that sat underneath his skin which they would access with a needle when they needed to use it.  They needed this broviac for his bone marrow transplant because it has 2 lumens, and he had so many things going into his line at once that he needed the extra lumen.

This is showing the 2 lumens.


We have to flush Ethan's line with Saline and heplock them to keep them from clogging twice a day.  We also do dressing changes on the central line once a week, and change the claves on the end once a week.

This is daddy flushing his line for the night.



 Ethan's worst medicine to take is Cyclosporine, which helps prevent graft vs host disease.  It is the hardest medicine for Ethan to take.  This is Merrill trying to give it to him, but Ethan is "hiding".  Poor kid!


On top of Ethan's care, we have a lot of cleaning to do.  Every day, we have to dust, vacuum, empty garbages, and clean the sinks and counters in all of the bathrooms and the kitchen.  Every week, we basically have to wipe down everything from ceiling to floor (ceiling, walls, ceiling fans, on top of cupboards, on top of the fridge, heater vents, etc - anything that collects dust).  We also have to deep clean everything once a week.  It has been quite the job keeping up with it on top of keeping up with Ethan.  

I know I mention my fabulous friends and family a lot, but they are truly fabulous!  We have a neighbor who is in the process of hiring someone to come in and do the big wipe down once a week for us.  I can't tell you how much this will help.  Sometimes I feel like we are treading water.  Not only do we have the house and Ethan, but we have "regular" life too.  We have 5 other kids to take care of and get places.  Merrill works. Ethan is going into clinic once a week, my dad is doing his own treatments for prostate cancer that we have been trying to be supportive of.  This will just be such a HUGE help!  I am TRULY, TRULY blessed!

As for what the future holds, they are already weaning Ethan from his graft vs host medicine.  This is a new protocol for sibling donations to start it this early.  We will continue to go into clinic once a week.  Once Ethan reaches his 100 days on April 23rd (yes, we have counted and have it marked on our calendars), he will have a little more freedom, and medicines will start to drop slowly one by one.  Some he will have to be on for about a year, while others are not as long.  We still have a long road ahead of us, but as I said above, we have been truly blessed, and I have never felt like our family has had to do this alone.  This has been a HUGE group effort.  I am so grateful for that!


Friday, February 14, 2014

Engraftment and HOME!

We made it!  Ethan's new bone marrow engrafted on day 16.  Average with a sibling donor is day 19.  They gave him neupogen, a drug that helps your counts rebound faster, to help him get things going a little quicker.  They were worried about the paraflu that he had before going in causing more problems.  Right around engraftment, the mucusitis started going away, and he started to feel a little better.  They started to wean him from his narcotics, and started moving over from IV medicines to oral medicines.  This can be a little tricky with a little tummy that doesn't feel well, and with a tummy that hasn't eaten in weeks.  Overall, he did a really great job.  Medicine is still an issue.  It takes us about 2 hours each morning and night and A LOT of persuasion to get all of them down, but it does seem like it is starting to get a little easier.

This is his morning dose of medicine.  The two cups are mouth care, which he doesn't have to do at home anymore, but did 3-4 times a day in the hospital:



This is what we picked up from the pharmacy before we came home.  Apparently, Ethan was on the low end of medicines, compared to most bone marrow transplant kids.  I can't imagine more than this!


He saw a picture of a fellow cancer fighter when she got her bone marrow transplant with all of the pumps on her IV pole.  He was so excited to start getting more and more pumps!  Unfortunately, when he got up to his max, he was too sick to care anymore.  It was nice to see the pumps disappear one by one as we drew nearer to our coming home.



We got quite the list of cleaning that we have to do each day and week.  In order to get the house ready for Ethan to come home, we had to do a deep cleaning to eliminate as much dust and germs as possible because his immune system isn't working to full capacity, and won't for quite some time, so this is something we will have to maintain for a while as well.  These fabulous family and friends came to help me get it in order.  We literally cleaned the house from ceiling to floor.  The ladies were wonderful! My house has never been so clean!  And awesome Charles had the dirty job of cleaning all of the walls and ceilings!  I could never have done this without them!





At the end of treatment, it is tradition for cancer kids to "ring the bell".  They make it a special thing for the family, and the cancer child.  It is a huge milestone, because it means that from here on out (minus a few lumbar punctures with chemo in the spinal fluid), he is finished with actual treatments.  Now it will just be healing!  This is a video from his bell ringing ceremony. My parents were unable to make it because my dad just found out that he has prostate cancer, and had to go get some tests done himself on the day we rang the bell, but Merrill's parents came, and the kids came.  It was a lot of fun!










We came home 25 days after his transplant.  With the week we were in before this for radiation, this added up to 32 days of being inpatient.  It was such a wonderful thing to be able to come home and be together as a family!  The kids all wanted to be by Ethan.  I looked over, and this is what we saw.  Everyone as close as they could be to him.  It was so sweet!


These are the fun pictures of Ethan and Blake in their Donor and Recipient t-shirts.  Blake's says "bone marrow transplant donor", and Ethan's says "bone marrow transplant recipient".  They are so sweet together.  




And just a few more pictures from our stay!  Ethan grew quite attached to his blue throw up bags.  He has a list for Santa Claus, and these throw up bags with their holder (can't forget the holder) made it onto the list.  Not sure if it is funny or sad.  Probably a little of both!




Ethan LOVES legos!  We did hours and hours of building and playing with legos!  



Ethan with Daddy.  Not feeling so well at the moment.


I am so grateful for the many, many, MANY wonderful people we have in our lives.  There is not a day that goes by that I don't think of how much we have been blessed with so many people who help us in SO many ways!  This is not something that would easily be done alone, but I have never had that worry.  I can literally make one phone call, and have many helping hands ready to assist.  That in itself is a miracle and blessing.  

Sometimes I wonder- if I could rewind time, and somehow have the power to choose life without cancer, would I do it?  I can't say for sure.  This has definitely been (and still continues to be) a long, hard road.  But one thing I do know for certain, I would never have wanted to miss out on the things I have learned along the way.  I have learned of the innate goodness in people.  I have learned to never judge others because you don't know what they have going on in their lives.  I have learned what it feels like to be burdened with care greater than you ever before imagined, and have learned empathy.  I have learned even more personally the love of a loving Heavenly Father.  I have learned more personally how the atonement applies to me, and not only to me, but my loved ones.  I have literally felt my burdens lifted.  I have felt angels surrounding us.  I have truly seen miracles.  So while this road has been long and hard, there have also been many, many good things.  Things I could not have learned any other way.  For that, I am, and always will be grateful.

Sunday, January 26, 2014

Day 1 to 13 of our bone marrow transplant

In bone marrow transplant world, every day is numbered.  The day of your transplant is day 0, and then you number every day after that.  Today we are almost to our 2 week mark at day 13, and boy, has it been a roller coaster!

Our first week went about as expected.  Ethan was sick. He got mucusitis, which are like cankers in your mouth, down your throat and into your intestines. Thankfully Ethan's wasn't in his mouth, but he had a killer sore throat!  He was nauseous and completely stopped eating and for the most part stopped drinking.  He is living off of IV nutrition and fluids. He hasn't had energy, and has been having some bladder and bowel issues caused by all of the medicine that is going into his body right now.  His breathing was a little labored because of the paraflu that he had before he went into transplant, and the mucusitis closing off his airway.

Our second week was more of the same, only more intense.  His breathing became more labored, and he was put on oxygen.  We tried both a mask and a nasal cannula, but neither were working well enough for him.



The regular oxygen ended up not being enough, so we were sent down to the PICU (pediatric intensive care unit).  There he was put on positive high air flow.  

They tried to use this:



But Ethan wasn't going for that.  He fought them because he didn't want that on, so they settled on this:



After 2 days in the PICU, we were sent back up to our room in ICS.  The whole time we were in PICU, he just kept saying that he wanted to be inpatient, meaning he wanted to go back to our room, so he was happy to be back in a familiar place with familiar nurses.

The day we left the PICU, he also started fevering.  They said this was normal at that stage of transplant, but he had a fever off and on for 2 days. The fever is gone now, so that is good.

It has been so hard seeing him so sick and in pain.  He does 2-3 anti nausea medications, and he is on a dildaudid pump for pain (he was on a morphine pump, but it was giving him headaches).  He has several antibiotics, and he has some medicines to help him go to the bathroom since all of the other medications make that hard to do.  He is also doing some steroids to help reduce the inflammation in his throat.  The steroids are tricky because they could contribute to graft vs. host disease, but they were necessary to help him breath.  

Today Ethan has been breathing better and feeling better.  He has a white blood count of 200, which his new bone marrow produced all by itself!  This is a good sign that engraftment is in his future.  We are hoping that things are on the uphill now, but time will tell.

We have spent many sleepless nights both at the hospital and home.  There was one night that Merrill didn't get to bed until 9 am.  Ethan needs a lot throughout the night, and there are always nurses and BEEPING (oh, the beeping) of the monitors!  Blake decided he wanted to crawl out of his crib, so we are training him to sleep in his bed, but he has had a hard time with the transition, so even when we are home, we still don't get a good nights rest.  We just decided that we will not plan on sleeping, and if we happen to get a few hours in, we will be grateful!

I can't even begin to tell you how grateful I am to everyone who has taken such an interest in our family.  I am so grateful for the support we get from our family, friends, neighbors, and even people I don't know.  We are truly blessed to have such wonderful people in our lives!  THANK YOU from the bottom of our hearts!

Monday, January 13, 2014

Transplant day!

Finally!  The day we have been working towards since June!  Our morning started early.  Brayden and I got up at 4:30 to get ready.  We had to leave the house at 5:15 to get up to the hospital in time for Blake to check into same day surgery.

Blake had a lot of fun at first:



But then he decided this isn't all it's cracked up to be.  Doing vitals and putting THEIR pajamas on are not his favorite:



Going to the playroom waiting room to play made it all better though:




They gave him versed to make him relax, and took him back.  Then we waited.  Merrill was upstairs with Ethan, so I was grateful that Brayden was willing to come with me to help me.  He and Blake formed a special bond while we have been in and out of the hospital so much.

After about 1 1/2 hours, Blake was finished.  We went back to get him.  He was very, very sleepy!  We could move him around however we wanted, and this boy was NOT waking up!


After about 2 hours of waiting for him to wake up, they finally decided to wake him up with a cold wash cloth.  He woke up and enjoyed some nice applesauce.  






Then we headed to Ethan's room.  Brayden decided to veg on the hospital bed since Ethan was up playing!


After eating some lunch and waiting for a bit, we all donned our party hats.  It was time for a celebration!  They gave Ethan some Benadryl so he wouldn't have an allergic reaction to the bone marrow, so he was a little sleepy for his celebration :)



All of the available doctors and nurses came in to sing Happy BMT (bone marrow transplant) Birthday!  They are all wearing gowns and masks because Ethan has paraflu and rhinovirus.  They wear these to protect other kids from getting it too.



 They gave both Blake and Ethan gifts for Ethan's new "birthday", and to Blake for making his new birthday possible.



It is tradition for the staff to guess what day the transplant kids will engraft.  They make bets and put their money in the envelope.  Regardless of who wins, they give the money to Ethan!


My awesome hubby drew Ethan a lego batman on his whiteboard for him!


All of the staff signed Ethan's banner, and they hung it in his room:


Getting ready to hang up the bone marrow.  Double and triple checking everything!


This is Jordyn our nurse.  She is special to us because she started us on blinatumomab (our experimental drug that saved Ethan's life), and she was here to hang his bone marrow, which saved his life as well!


Here it is!  From Blake to Ethan in one day!  Blake's (and now Ethan's) bone marrow!  They do this just like a blood transfusion and put it into Ethan's central line.  This is the easy part for Ethan.


The cute brothers playing on Ethan's bed with daddy, or more like Blake hoarding all of Ethan's new cars :)


After an exhausting day, they both took a nap next to each other :)  I love them so much!


These are the t-shirts they gave Blake and Ethan.  Blake's says "donor", and Ethan's says "recipient".  We didn't get them on them before they fell asleep!

This is Blake's bandage on his back.  He has been such a trooper!


It has truly been an exhausting, wonderful, magical day.  I have been so worried about Blake having to go through this.  The boy has been amazing!  He was up and playing.  Climbing on things, jumping around, running, and laughing.  You can tell he is a little sore, but he is doing much better than expected!  He is our little miracle worker!  

Ethan has been up and down a little bit over the last week.  Today was a good day.  He was feeling well and having fun.

Now we just wait for engraftment.  The average for this is 21 days, but it ranges from about 2-6 weeks.  In the meantime, they will be watching for graft vs host disease, fevers, mucusitis and any type of infection or illness. 

I am so grateful to my Heavenly Father that we were able to do this today.  That the experimental drug worked.  That Blake was a perfect match.  That Ethan is doing so well.  That we have so many AMAZING people around us offering love and support in every way.  I have seen so many miracles and tender mercies throughout this whole process.