I am taking the weekend off on this site. Sleep depravation is catching up with me, plus my father in law is passing through town. But I plan to be back on track Monday.
As for Ethan’s site, it won’t miss a beat.
Have a wonderful weekend everyone!
~ Ben 
Now that we have announced that Ethan’s bone marrow transplant is tentatively scheduled for two months from now the email has really picked up. Rather than answer each one by one with the same answer… here is the latest that should answer most of the questions that we get.
How can I be tested to be a donor?
There are 4-5 drives in honor of Ethan coming up on the next few weeks. They drive in from Mississippi with special equipment to do these drives. I am not scheduling them, so I do not know exact dates. But I’ve heard through the grapevine where most of them are. The three that I know of for sure are in Shreveport, LA / Vivian, LA / Sprinhill, LA. There are also a couple others but I can’t remember where. My dad is supposed to send me the details on these three and a couple others in the next couple days. In the meantime, feel free to ask around, someone probably knows. Once I know more, I will update.
What did all that jibberish about Randomization mean?
(a really sweet and intellgent lady emailed me with this info)
I have learned from the randomization process that there are indeed two sides to the randomization coin. Those who are randomized to the “control” group or “standard treatment” group are getting a tried and true treatment that usually is “the best we have available that helps the most.” That obviously is what Ethan will get. Had he been randomized to the “Experimental” group he would have been getting a treatment that has not yet been proven to work. The idea they are testing this new treatment has validity on paper but no track record. This means it may be the best thing to ever come down the pike for leukemia OR it could be the same as the “standard” treatment OR it could be a total flop.
I say all that to say that “Standard” treatment isn’t necessarily a bad thing. And of course, like you said, God is in control and He has a reason for Ethan to be in the Standard group. We don’t know that reason. We may never know that reason. But we DO KNOW that all things work to the good of His people.
Do you have any needs?
Prayer
Can I come to see you at the hospital?
No… Sorry I couldn’t resist. :) But in all seriousness… Ethan’s immune system is the number one concern. As much as I would love to meet you all, the chances are… that if I met with just 50 people, one of them would have been exposed to sickness recently. And I know you wouldn’t want that on your conscience. This applies primarily to preachers, teachers, and anyone that comes in contact with a lot of people on a daily basis. HOWEVER… I am planning a surprise for when this is all over and his immune system is up. More on that later…
What’s the Story with the T-Shirts?
By now, you have probably seen or heard about the T-shirts that have been ciculating. We are pushing to get t-shirts out before Ethan’s transplant. We are asking that everyone wear their T-shirt for Ethan the day of his actual transplant. Not only is this good for Ethan, but it helps spread the message that PRAYER WORKS!
So how do I get a T-shirt?
A former youth grouper (now friend) of mine, created them and will be sending me the paypal link in the next couple days. They cost $10,000 and the proceeds go to Ethan’s college fund… just kidding. They cost $10 plus shipping, and I believe that you will be able to order by credit or debit card. I appreciate Greg working to get them so reasonably priced. The most common question about the T-shirts is, “do you have toddler sizes?” Currently they do not… but we have talked about getting some if we can.
When are you coming home?
I wish I knew. I miss Unveristy Church, I miss my friends at LSUHSC, my other friends, my neighbors, my family, and this is going to sound terrible… but mostly my dogs… they are our babies. (I almost forgot the cat… oh well… she is snooty anyway.)
Why didn’t you respond to my email?
Most days we get hundreds of emails. We try to read each and every one and respond until our fingers fall off. Personally, I read the email about 8-10 times a day and respond to about 25-30. But frankly, we just hope that you understand… it is impossible. At the same time, we don’t want you to stop sending them, because it has been a major source of encouragement for us. Any time we have a difficult day, we just open the ole’ email up and start reading. The stories you send are so amazing! Thank you! Thank you! Thank you!
If I ”Blogged” everyday of my life, I think this would still end up being my all time favorite post. I reached deep into my soul and pulled out the core of my pain, and exposed it to you. If you have the time, try to read it entirely. The first paragraph is just basically more information about Ethan and today, after that it gets fairly personal.
Today we find more about which protocol that Ethan will get. We have selected the option of “randomization”. This gives us a chance at a new protocol that is referred to as “experimental”. It is very powerful and potentially dangerous for Ethan if not successful because they use such a powerful form of chemotherapy. From what I undestand, to even get chosen for this protocol they basically “flip a coin” using computer software. If the computer radomly selects you for the “experimental” then you get it. Otherwise, you get the “standard option”. But in the last couple weeks, the standard protocol has also been changed. Either way, information from Ethan’s case will help pave new ground in research. Today the “coin will be flipped”. Either way I feel confident. Its a shame that the results will be tainted, because research doesn’t include the key ingredient… PRAYER! PRAYER WORKS!!!
I felt compelled to share something intimate to both me and Becky. Last night it was really on my heart, so I kept on typing. I only hope that it comes out the way that I intend for it to. I am not always the best with words.
Two and a half years ago, our faith was tested immensely. I have always taught youth groups that Mark 11:21-23 meant exactly what it said… otherwise, ”Why is it there?” But you have to BELIEVE, and that is where most of us slip up. We pray once and pretend (TRY) to believe, then we worry secretively and “wait it out”. (I do not mean to say that if you pray for something and it is not answered the way you would like that your faith is weak.) Shortly after teaching a series on prayer, I was tested and ended up feeling like a real failure. Becky and I prayed for the health of our little “baby in the womb”. But without any sort of warning signs we had a miscarriage. It was devastating. How can you pray for a baby to be healthy and then have it taken away from you? (Don’t take this snooty, but please don’t leave a comment saying… “that baby would have probably had brain damage”.) I thought time and time again… What did I do wrong? Is there something wrong with me. Is something in me defective that would cause a baby to be imperfect? I truly believe in the power of prayer, so why wasn’t my prayer answered? I held on with all of my might and prayed that God would help me understand why it happened. No response? Not even a hint? Where is this peace that the Bible talks about?
Then came Ethan two and a half years later, with one glance I could see that he was beautiful. I felt relief that I wasn’t holding Becky back from having a “healthy” child. I remember looking at him and thinking how could he be so perfect? But wait there’s more… as terrible as the miscarriage was, we could have never imagined a situation that would be more painful. Then came February 6th and the news about Ethan. It was so devestating to look into his eyes, watch him smile, and squeeze his cute little cheeks, and then consider the fact that you might not have him in a matter of hours.
Finally, a couple week ago we were told that if Ethan had a sibling… that would most likely be his best match for a bone marrow donor. THE DEVIL SLAPPED ME ACROSS THE FACE AND SAID, “TAKE THAT! WHERE IS THIS GOD OF YOURS NOW?” This was just another attempt at a knockout punch, and the devil FAILED again!
In retrospect, everything seems so clear. I am able to see all of the ways that God prepared us for our current situation. Without prayer this would be impossible. Literally everyday I look at the emails, the messageboard, and the REAL mail… and a little light goes off in my head. I am reminded of a scripture that never really made sense until now.
Where I am weak, then I am strong. 2 Corinthians 12:8-10
Yet another piece of wisdom straight out of the Bible. The answers are there for the taking. It just takes some us a little longer than others. (I don’t know why, but I always seem to take the long road.) There are many undeniable truths that come from THE WORD. It is real and breathes life into us, but the question is… Will we allow it the opportunity or are we just too busy with OUR VERSION OF LIFE?
If you are waiting to see if Ethan makes it through this successfully, then you are wasting precious time. Make the change now, you have seen the difference in Ethan’s life already. Just look at the odds. It is day 44 and he is still ALIVE. On top of that, what happened to the 1.6 million white blood cells? Did you know that 1.6 million white blood cells is more than enough to fill 8,000 healthy adults. Why didn’t this little boy die? Why has he continued to look so healthy? Why did his count just happen to be so high the day that he went in for his 2 month check up? There is no such thing as coincidence. Its just a word that we as humans made up. The worst part is that is denies the power of God. That should be more than enough proof for you to feel HIM tugging at your heart. GOD is up there cheering you on, and pulling for you. All you have to do is take the first step.
If you are in the Shreveport area, call (318) 797-6333 and just tell them that you have been praying for Ethan and you would like to know more about worshiping with his extended family. And when you get there, hug someone on my behalf.
This looks like a lot to read because of the narrow margins, but you should be able to knock it out in about 2-3 minutes. Most days this will just have information about life in the hospital or other things that are going on with Ethan. Today I blogged my heart out.
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Wow. It seems like only yesterday that we arrived here. After that statement, this one might not make much sense. But Ethan’s birthday (12-05-06) seems like 2 years ago. Those two thoughts have been running through my mind a lot lately. I have been thinking about the concept of “time”, and what I have been spending so much of my “spare time” on while here. Any time I have left in the day is spent on this: prayer & reading, the website, the phone, the guestbook, email, the chatroom, the REAL Mail (our personal favorite).
Just eight weeks ago, I spent my time worrying about having enough money to pay the bills and now I could care less. The bills will get paid. I never realized how silly it all was. I would rather sell everything I have for just one more day with Ethan. The best part is that one day, he will walk out of this place and we will have an understanding of what it truly means to appreciate every moment. Don’t get me wrong… I cherished every moment with him before. Anyone that knows me well would tell you… since Ethan was born, I have talked about nothing else. But this is different in that I am not concerned about the petty things like, “will he grow up to play football”, or “will the other kids in school like him”. Now I have one primary thing on my mind… “when he gets older, will he truly appreciate the second chance that God will soon grant him”. I believe he will. And the neat thing is that he can be in almost any situation and serve a greater purpose.
I am learning that God can use anyone to spread his message, and in many cases we don’t even have to go anywhere. For example… the sweet lady that send us cards every week, or the wonderful family that send a couple emails every few days, or the nurse that takes the extra minute or two to get to know us, or the lady that posts Ethan’s pictures on her billboards, or the person that spreads the prayer chain to their entire address book. I believe the hardest part for people in my generation is to be content no matter what situation we are in. We have become accustomed to instant gratification. Its so easy to volunteer for something and give 100% for one day only to give up because it just wasn’t what we expected. I know I have made that mistake before. My intentions were pure, but I was SEEKING a purpose rather than helping someone meet a need. Although I have been part of some pretty amazing things… for once in my life, I am able to feel like I am part of a much bigger plan. It comes at a high price, but in retrospect I can see how God has prepared me for this moment. I would be a fool to waste this opportunity to serve. I would be a fool to sit around and cry all day and say “why me Lord? why me? what have I done?” This is an opportunity not an obstacle. Please be encouraged that today can be your day! YOU CAN MAKE A DIFFERENCE FROM WHERE YOU ARE SITTING RIGHT NOW WITHOUT LEAVING YOUR CHAIR. Don’t be intimidated by your Bible! The above concept is just Phillipians 4:10-13, and as a matter of fact Paul’s letter is much shorter than mine. Be a servant. Keep your eyes open for an opportunity. While you are praying for a purpose, there is always someone else praying for a need to be met. Chances are… you are sitting right next to them.
YES! PRAYER STILL WORKS!!!
If you are reading this post, you most likely arrived here from www.ethanpowell.com. Which means that you probably know the story of my 3 month old son Ethan and his battle with Leukemia. I hope to clear up some misconceptions about Leukemia and explain in more detail why Ethan (statistically) has a 15% chance of survival. I believe this will be a great place to pour out my heart, plus provide some inside information that might not be as appropriate for Ethan’s website. My goal is to update this blog daily with a more complete picture about life in St. Jude Children’s Hospital, and hopefully shed more light on the emotions that are associated with being a parent of a child with Leukemia.
I have maintained many blogs over the past few years, but frankly I am having trouble keeping up with all of them. So I am doing what I should have done a long long time ago… pointing all of my “private blogs” here. I am hoping that more blog users, will take the opportunity to link to either this site or Ethan’s website. This could be a great resource for recruiting more “prayer warriors”.
