"...[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. :) "
"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! :) "