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.  

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.

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.

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!

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.

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!