Our superhero!

Our superhero!
Our superhero!

Monday, December 12, 2011

Doing well!

It has been a while since we have updated the blog, so we just wanted to do a quick update.  Ethan is doing quite well.  He has regained his energy, and is running around and playing.  The only difference in him from pre-diagnosis, is that he is a little more tired, a little more clingy, and he won't eat!  He is doing really good, though.  We are still going in for weekly chemo treatments.  He has 2 weeks left, and he will be finished with his 2nd phase!  Whoo hooo! 

He has received blood a couple of times, and had a hard time with some of the chemo, but we have been greatly blessed that the chemo he really struggled with hasn't seemed to effect him as much this time.  We are SO grateful for that!  Ethan also got a new picc line again.  His old one was leaking.  They moved it to his other arm, which has been very confusing to him.  He keeps handing me and the nurses his right arm, and then searching to see where his line went before he remembers that it was switched to his left arm!  It's really rather cute!  He also developed antibodies in his blood, so it takes an overnight search to find a blood match for him now, where it used to just take a couple of hours.  This makes things a little bit harder, because if he needs blood, we have to go back into clinic the next day instead of doing it while we are already there. 

After this phase, Ethan will be doing a few hospital stays.  He will go in for 3-4 nights every other week for 2 months (so a total of 4 stays).  None of us are looking forward to doing the hospital again, but hopefully all will go well, and it will just be a few days!  The chemo they will be giving him requires him to be monitored, and to be on fluids. 

As a family, we are adjusting to our "new normal", and looking forward to Christmas.  The kids are so great to help with whatever Ethan needs, and they know more medical terms than any kid should, but it has all become second nature to them, and us! 

If Ethan's treatment stays as planned, he will be doing 6 more months of chemo before he goes into maintenance, where he will still get chemo, but only once a month.  He has to wait for his blood counts to rebound between each month, so we are hoping to be finished in July, and then go into maintenance.  Maintenance will last another 2 1/2 years.

As always, we have truly been blessed by both our Heavenly Father, and so many of you!  We are so grateful for the blessings we have received, and wish you all a very merry Christmas! 

Monday, November 7, 2011

Lots of improvements :)

Ethan has been continually improving over the last week.  A week ago, he could barely crawl.  Yesterday he walked all the way across the family room!  He is continually gaining strength and energy.  He still doesn't dare to walk too far by himself without a hand to hold, but it gets better and better each day.

He is also eating better.  He has been without his feeding tube since Friday.  It fell out, so we tried to let him eat on his own.  He has reverted back to baby food, and banana yogurt, but we are just happy that he is eating.  We all cheer for him with each bite he takes.  He also drinks a TON of whole milk, which helps with the calorie intake!

We have one more chemo treatment on Wednesday, and then we will be in the middle of this second phase.  He will get a couple weeks break to let his blood counts come back up, and then he will do a repeat of this month.  We are dreading ARA-C (the chemo that makes him REALLY sick), but we are still grateful for it, as it makes him better in the long run.  I will just be glad when it is over :)

As always, we are SO grateful for the support that continually pours in.  We love you all!   

Monday, October 31, 2011

Happy Halloween!

Ethan ate his first solid food in over a month today.  See, Halloween is good for something, eh?  It was an old favorite, regular M&M's.  Thanks, Jerin for sharing!  He also ate a sucker too.  Yes, he is feeling better.

One of the chemo medications Ethan is on during this phase of treatment is called Ara-C.  This medication made Ethan very sick the last couple of weeks.  But, thankfully, he gets a break from that for a couple weeks, then he's back on it...for a couple of weeksu.  Since he's not on that, he's feeling tons better.  He's been playing lots and lots with his trains (driving them off the couch again and again and laughing his head off and shouting "uh-oh!"), cars, books, puzzles, and anything else he can get his hands on. 

Because he's been in the hospital for so long, the muscles in his legs have atrophied a bit, so it's hard for him to stand and crawl, let alone walk.  So we're helping him to get up to speed with that while he's on his little Ara-C break and getting exercise carrying him all around the house. =) When we give him his antibiotics, it goes through his PICC line.  Ethan is so cute and will hold out his little arm for us even though he doesn't like it.

Since he's been home, he's learned a few new words such as "frog", "horse", "Tootles" (from Mickey Mouse Clubhouse), "Pluto", "Duck" (for Donald Duck), "yes" and has taken to singing songs like "lalalala".  He has also grown quite attached to the movie "Cars" and says "beep beep" thoughout much of the movie. But the best of all are the hugs we get from him.  He is very loving - a trait we hope he'll keep. =)

Sunday, October 23, 2011

Home At Last!

Ethan's month long stint at the hospital ended last Tuesday, finally!  We were very glad to have both Ethan and Jen home. =)

Ethan's counts were good enough to move him into the next phase of treatment: Consolidation.  During this phase, he'll have different kinds of chemo treatment, one of which will make him really sick, namely, Ara C.  Ethan still has an abcess on his liver.  He's already suseptible to getting fevers from that, but Ara C has the potential to magnify that.  Last Thursday, he did actually get a big fever and we took him to a clinic to get checked.  He was also vomiting a lot Tuesday through Thursday.  The doctor prescribed benedryl in addition to zophran to kill the nausea.  Thankfully, that's helped a lot - hasn't thrown up since! =)  In fact, Ethan has gotten his spunk back.  He sat up on his own to play tonight.  We haven't seen him do this for several weeks.  He's laughed a lot and gotten his voice back in order - he talks a lot more now, even learned a few new words, like "Horse" and "Duck".

The kids are loving having him home and play with him a lot.  He get really excited when they come over to play with him. 

The hard part through all this is managing the house and staying on top of all of Ethan's medication.  He has a feeding tube too, which adds to the challenge.  With Jen being pregnant, she's not allowed to administer any of the chemo treatments; the home health care nurse has to do that when Merrill is at work.  Ethan has to take his anti-nausea medicine every three hours - makes sleeping at night fun... 

Besides all the extra challenges, we feel very blessed.  So many have lended helping hands, offered up prayers, provided much needed service in many varieties, or shared comforting words.  We are very grateful for all the help and support.  This is definitely not easy, but the help we have received has made it much more bareable.  We are also so very grateful for the Gospel of Jesus Christ which gives us strength and support in ways we cannot fathom.  God does work miracles and does hear and answer prayers.  He does provide comfort when at times there doesn't seem to be any.  He finds a way to bless when all other paths seem to prevent those blessings from coming.  He has a way to heal the broken heart to give courage to keep moving forward.  He provides strength during those times when it seems like there is no energy left to move forward physically, mentally, or spiritually.  We are eternally grateful for the Atonement.  We are learning daily more about how that helps us grow closer to Christ.  This trial has put into perspective the Plan of Salvation and how important mortality is to our eternal progression.  Trials help us to become like our Father in Heaven.  We cannot progress without learning; learning requires differentiating the good and the bad, the pleasant and the difficult and still making the right choices.  Ethan in his own little way is an example to us of perserverence, faith, and patience.  We cannot imagine being in his shoes, but the light we see in him gives us hope and helps us remember what is most important in life.  We are grateful to have him home! =)

Wednesday, October 12, 2011

Good news:)

Yesterday we got the initial reusults from Ethan's bone marrow and lumbar puncture. The initial results were negative for any leukemia cells. We still have to wait for the final results to come back, which is a more thourough test. We are pleased that at least the initial test came back negative! If the final results are negative as well, he will be in reemission, and will be able to move on to the second phase, which is consolidation. We should get those results soon.

Ethan has also started physical therapy. Yesterday was the first day they came, and to put it mildly, he wasn't very cooperative. He has been feeling pretty lousy, and sitting on the floor and playing is not on his list of things he wants to do:) I think it is good for him to make sure he is moving his muscles, and I think physical therapy is good, but at the same time, I understand where he is coming from. If you think of when you aren't feeling well, and are nauseous, and have a fever, you really don't feel like playing:) Hopefully he can start to feel better soon, and it will be easier!

Another piece of good news is that his counts are coming up! As his counts improve, they are hoping that his abscess on his liver fills with fluids, and the they can drain it, which will take care of the fevers. Also as his counts come up, it should give him more energy and make him feel a little better!

We have also gone back to the feeding tube. He has had a bit of a rough time with that, but we are hoping that will also make him feel better. He has been sick to his stomach,and has thrown up the feeding tube a couple of times, and has also pulled the tube out a couple of times. Hopefully we can keep it in now.

That is the latest! We will keep you updated! Thanks again for all of your love and support!

Saturday, October 8, 2011

New updates

While it hasn't been a long time since I posted last, a lot has happened! first of all, they think they have found the reason for the fevers. He has an abscess on his liver. The doctors went back and forth for a few days on if it really was an abscess or not, but the official pathology reports came back that it was indeed and abscess. The latest plan a was to wait until his counts improved, which should make the abscess fill with fluid, and then they can drain it which will improve the fevers and antibiotics can reach it better. As of today, his counts were still at zero. Not sure when they'll improve?

Yesterday he also got a feeding tube put in. After he pulled it out 2 times yesterday, they decided to see if we could get him to eat on his own. He needs 600 calories a day, but is having a hard time with that. We have tried brownies, milkshakes, pediasure, carnation instant breakfast, and nothing is working. If anyone has a great idea, please let me know!

Also yesterday he had a bone marrow and lumbar puncture. These test should come back negative for leukemia cells. If not, he can't move on to the next phase of his treatment. We should find out on Monday.

On the home front, Merrill started his new job on Thursday and loves it! He is so happy, and it is such a good thing for him. We are all so grateful for that! Merrill did get in an accident yesterday while he was driving across campus to get a key to his office. A girl didn't see him and turned into him. No one was hurt, and Merrill was so sweet, and felt bad for the girl (I have been there & know how she feels)! Also, our sprinklers broke at 5:30 this morning, so I got to haul water out of the window well in the rain in the wee hours of the morning! The kids were troopers, and all four helped put towels down & get cleaned up. They are the best!

Now, just as a warning, I tend to overanalyze things, so if you want to stop reading now, go ahead, I won't be offended! Just to start off, I grew up playing softball, and I LOVED softball! I played both slow and fast pitch all summer, and was on the high school team as well. I would go outside and practice for hours at a time by myself. I would throw up the ball and hit it, practice pitching at the fence, throw the ball at the house so I could field grounders, etc, etc, etc.

Last night before I was awoken with the sprinkler issues, I had a dream. I was at a family reunion, and we were going to play softball. We went to the field, and I was SO excited to play. My team was up to bat first. As I got up to bat, there were walls in front of me, and behind me. I was pushed up close to home plate, and as I tried to get a full swing, My bat hit the wall in front of me. No matter how hard I tried, I could not hit the ball, which left me very frustrated. I kept striking out because I couldn't get a good stance, and swing the right way. It was about this time that Jerin woke me up. After all had calmed down, we all went back to bed. As I lay there trying to go back to sleep, I thought of my dream, and it dawned on me that I should have bunted! Now while that wasn't the power hit I was looking for to get everyone home, It would have gotten me to first base, and I could have relied on someone else that the walls didn't have a hold on to hit me home! Now, while this is an odd thing to think about while life is falling apart, I think it was for a reason. This is so much like my situation, and probably like most of our lives on more occasions than we care to admit! Right now, I am helpless. I have things blocking my way that I am helpless to remove. No matter how hard I try, I end up hitting a wall, and striking out. If I stop and look at the situation, and do the little things to move forward, and at least get me on base, I can rely on my Heavenly Father, who is without walls, to swing big and hit me home. I can't win the game on my own, but if I do my part, Heavenly Father can make up for the rest! I am SO grateful for the knowledge of my Heavenly Father's love for my family. I know beyond a doubt that he will bat us home if we do everything in our power to just get on base!

While times are hard, not just for my family, but for everyone at one point or another, the knowledge of a bigger plan can help us see things a little clearer, and our burdens WILL be lightened! I know this to be true!

Thursday, September 29, 2011

Slow response

Hello again! So Ethan is still in the hospital. Apparently this fever wants to stick around for a while! We have done several tests and have not found a cause yet, but at this point, I am just willing the fever to go away!

We also found out today that Ethan's bone marrow blasts are higher than they want than to be at this point, so he is considered a slow responder. That means they will alter the course of his treatment making it a harsher course for him, and adding 4 more months to his original treatment plan. This new plan will include more chemo, as well as more intensified chemo, and also radiation. Now instead of the 7 month plan it will be an 11 month plan.

We are doing ok, although I think we're all tired, but again and always, people have been amazing to offer support and help in any way we need. Thank you a so much!

Tuesday, September 27, 2011

Hospital STILL!

So, we are still in the hospital. We were hoping to go home yesterday, but he keeps having a fever a couple of times a day. They removed his PICC line on Sunday because he had bacteria in his blood, but now the blood is coming back clean, and he is still having fevers. They are working on figuring it out, but haven't come to any conclusion yet. He is unable to leave the hospital until he goes 24 hours without a fever, and his diarrhea goes away as well. SO we are trying to stay positive, and keep going (not that we have much of a choice)!

On Saturday, Ethan's hair started to fall out, so we shaved his head so it would be less of a mess. The boys had decided beforehand that they wanted to shave their heads when Ethan's hair fell out in order to support him. It was such a sweet gesture, and I was so proud of them! We also had a sweet friend of the family shave his head in honor of Ethan. He is only 9, and it was so sweet of him to care enough to want to do something to support Ethan!

Other than missing being with each other as a family, I think we are doing ok! Thanks to everyone for your prayers and support! It truly makes a difficult time much easier!

Sunday, September 25, 2011

sept 25, 2011

The boys all buzzed their hair in honor of Ethan.  Makayla  offered to cut hers, which was a big sacrifice as she is trying to grow it out.
the kids came to visit today.  This is the most he has smiled since being diagnosed.  Made us all very happy.

Thursday, September 22, 2011

Hospital again

So we are in the hospital again. Yesterday Ethan had a fever, and after figuring out we had a faulty thermometer, and borrowing a friends (thanks Becky), I realized it was higher than I originally thought. Needless to say, Merrill bought a new thermometer on the way home from work yesterday:)

They did a blood test when we arrived yesterday and found bacteria in his blood. They did more tests early this morning to try to figure out if it was coming from his PICC line, or is actually in his blood. We still haven't heard the results from those tests yet. We were told to plan on staying tonight and probably tomorrow night as well. He hasn't had any new fevers since we were admitted, so that is always a good sign:)

Some GOOD news we received yesterday was that Merrill got a new job! It is simply amazing to me that just when we needed it, he was able to get what we needed. This job is almost equal to the amount that we needed to cover our expenses since I had to stop teaching piano. I have no doubt of the Lord's hand in it:)

As always, thank you all for your love, support, and prayers!

Saturday, September 17, 2011

Abraham & Isaac

Yesterday I got just a minuscule taste of how Abraham must have felt as he prepared to sacrifice his son. I was driving to the hospital to take Ethan to get his chemo treatments, along with his bone marrow and lumbar puncture, and the closer I got, the harder it was for me to keep going. I felt so bad that I was driving my little one to something that was going to make him sick and cause him pain. I knew it was going to be hard for him, and I felt bad that I had to subject him to what he was going to have to endure. I got to thinking of Abraham obeying our Heavenly Father and sacrificing his son. Unlike Abraham, I knew the procedures that Ethan was getting was needed to save his life. Abraham was taking his son to die. With that being said, our Heavenly Father sacrificed His son for us. Christ took on the pains, sicknesses, and sins of the world so that that we might live again, and have the opportunity to return to our Heavenly Father. Christ suffered so that this trial, even though at times seems unbearable, was made lighter for me, and MY son, so that we could bear it. It's almost overwhelming to even think about what both our Heavenly Father and our Savior must have gone through for the greater good of the world!

Ethan's procedures went well. He is very tired, and has very little energy, but he seems to be doing well. He wants to be held A LOT, which I don't blame him! His counts as of yesterday were: White blood cells- 800, platelets-9 (he got a transfusion yesterday, so that's higher now), blasts-9%, ANC/immune-100, red blood- 32.4.

As always, thank you for your endless love and support! You have all been such amazing examples ,to me and my family!

Thursday, September 15, 2011

Quick update...

Just a quick update- we found out yesterday that Ethan's immune system is too low, so he will not be able to get a port placed until after induction phase (probably 5-6 more weeks). We are disappointed in that there is virtually no maintenance with a port, less risk of infection, and besides that, he REALLY wants to take a normal bath:) Tomorrow we go in for chemo, bone marrow, and lumbar puncture (spinal fluid).

Ethan is continually getting better, although he has a hard time taking his medicine. After another week, hopefully the medicine intake will be less:)

Thank you all again for all your love and support! Every day I am amazed by people's generosity and the sincerity of it:) We keep using all of you as examples for both ourselves and our kids as examples of true charity! Hopefully we can be on the giving instead of the receiving end eventually!

Tuesday, September 13, 2011

First Day Home!

This is Jen- I was going to send Lisa an email to update, but figured I might as well just put it on here!

Ethan had a good night last night. He was walking around for the first time since last Tuesday. He was a little weak & wobbly, but has steadily improved throughout the day today. Last night he was unable to walk up the stairs because he was so weak, and this afternoon he was climbing onto the couch to sit by me!

We got his home health set up today so I can flush his central line. Along with that, he has 5 prescriptions to take! Hopefully I can keep it all straight!

Ethan will get a new central line put in on Friday called a port. It will be under his skin, and will be accessed by a needle. This will be easy maintenance in that we don't have to changes bandages or flush the line each day, and it will make it possible for him to take baths, swim, etc without having to worry about it!

For those who care or understand, Ethan's counts when we left the hospital were as follows:
White blood- 3.0, ANC (fighter cells)- .5, platelets, 50, blasts- 7%, HGB- 12.1, HCT 34.2
Hooray for transfusions!

I also wanted to thank everyone personally for all of the amazing support we have been given! I thought I had seen it all as far as people's generosity, but I realize now that it was just the tip of the iceberg! Family has been so amazing, and friends and neighbors have offered endless support! We love you all and will forever be indebted to you:)

Monday, September 12, 2011

Sept. 12, 2011

Home at Last

Ethan was released from the hospital early this afternoon.  He seems to be responding well to all of his treatments.  The VanLeuvens are very grateful for everyone's support, but they think that it would be a good idea, if for the next few days, they are allowed to focus on their little family.  They need to make sure that each of the children can adjust to the new normal in their home.

When they are ready for visitors, it will be very important to remember that Ethan's immune system is greatly compromised.  If you are not feeling well, or, if anyone in your home is not feeling well, please put off your visit until everyone is feeling better.  It will be very important to keep him from getting sick during his treatments.

Sunday, September 11, 2011

Jenn's Facebook Post

I have had a request to post the Facebook post that Jenn wrote last week.  I know not everyone has Facebook, so this way you can get a chance to see what she put there. 

Hello all:) I just wanted to thank everyone for your amazing love and support. I can't believe how amazing and willing to help everyone is. We are still trying to figure things out, and figure out what we will need, but everyone has been amazing. I also wanted to do a quick update because we have had lots of questions, which I truly appreciate:) I figured this may be the easiest way to do it:)
Ethan's leukemia is A-L-L. It is the most common, and easiest to treat. Today he got a PICC line put in so they can give him chemo, draw blood, etc. They also took a bone marrow sample, and a spinal fluid sample to test. Thankfully, no leukemia cells were found in the spinal fluid, so that makes treatment a little easier as well. He will be in the hospital until middle of next week, and then he will have treatments weekly for a while, and then monthly for 3-4 years, depending.
We are all in good spirits, and doing well. I hate to see my little guy have to go through so much, but I am so grateful for my knowledge that our Heavenly Father has a plan for us, and he hears and answers our prayers. You have all been His hands, and have truly mourned with those that mourn. I am so grateful for all of you. There will be a blog set up that people have volunteered to keep up, so I will let you know when I figure that out:) Thanks again! I love you all!

Medical Info

Hi,  to avoid any confusion, beginning today, these posts are being written by me, Lisa Wilson, a friend of the VanLeuvens.  Jenn asked me to write the updates until things settle down a bit, and she is able to do it herself.

Here is the medical info and explanation.  Merrill sent it to me.  I will post it in his own words.

WBC= white blood cells (measured in thousands, e.g. 24.1 is 24,100. Normal is 5,000 to 11,000)
ANC is absolute neutriphil count. These are fighter white blood cells that fight off infections (1.5 to 8.5 is normal, measured in thousands e.g. 1.9 is 1,900)
Blast cells are malignant cells and should be 0. Measured in %
PLT are platelets (150 to 400 is normal)
Hgb is hemoglobin or red blood cells (normal is 10.5 to 13.5)
Hct is hematocrit another type of red blod cell (normal is 33 to 39)

White blood cells, neutrophils, and blast cells should all eventually go to zero during chemotherapy. The bone marrow should generate new WBC and neutriphil.

When Ethan came to Primary Children's his counts were as follows:
WBC=140.0 or 140,000
Not sure about the specifics on the others. Platelets were very low, explaining the low energy last Tuesday and early Wednesday and the bruising.

Yesterday Ethan's counts were as follows:
WBC= 24.1 or 24,100
ANC=1.9 or 1,900

Today's counts:
WBC=5.1 or 5,100
ANC=1.0 or 1,000

Ethan did get platelets and blood today, so those red blood cell numbers should go up for tomorrow.  Because he did get blood today, he will be monitored closely for infections or issues with antibodies from the donated blood.  But his color is back!


Ethan received his first dose of chemo on Friday.  He threw up a couple of times on Saturday morning, but the anti-nausea medicine seems to be doing it's job now.  He even ate 3 bags of fruit snacks today.  He's become a very helpful patient, lifting up his leg for the nurse to scan his tag, and turning his head the right way for them to take his temperature.  He doesn't have much energy, but he has been talking.

After just the one dose of chemo, his white blood cell count is normal.  It went from 140,000 to 5,000. His blast count was at 89% and it has dropped to 33%, which is also normal.

His platelet count was 11, so today, he had a platelet transfusion, and a blood transfusion.  His platelet count should be at 150.  These procedures should help with that.

Merrill and Jenn are going to e-mail me Ethan's other numbers, so I will try to post those when I get them, for those of you who are medically inclined.

They continue to be blown away by the generosity of all of their friends and family.  Jenn has mentioned several times that she definitely feels as though the people in their lives are demonstrating what it means to, "bear one another's burdens."

Saturday, September 10, 2011


Ethan's leukemia is A-L-L. It is the most common, and easiest to treat. Today he got a PICC line put in so they can give him chemo, draw blood, etc. They also took a bone marrow sample, and a spinal fluid sample to test. Thankfully, no leukemia cells were found in the spinal fluid, so that makes treatment a little easier as well. He will be in the hospital until middle of next week, and then he will have treatments weekly for a while, and then monthly for 3-4 years, depending.

Friday, September 9, 2011

the first few days.....

Here are some pictures of our journey so far.
just some of the bruises you can see

poor sad kiddo.  shouldn't have to do this.

after his ecocardiogram

One for BYU

One for the Utes!

One for all of us!

for those of you who are following, we appreciate all your love and support in our behalf.