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!

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!

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.

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!

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!

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!

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:)

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.

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
Blast=62%
Plt=24
Hgb=9
Hct=27

Today's counts:
WBC=5.1 or 5,100
ANC=1.0 or 1,000
Blast=33%
Plt=11
Hgb=7.3
Hct=21.5

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!
 

Chemotherapy

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."

diagnosis

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.

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.