joelevangreen.com

Wed. 12:30pm – Joel Update (And Welcome to Joel’s Website)

amyg — Wed, 22 May 2013 18:44:53 +0000

We’ve noticed that this week we have had so many new visitor’s to Joel’s site and so many new comments on his posts. We want to welcome all of you to Joel’s website, and acknowledge that most of you probably heard about Joel through “My Last Days,” where you saw his video after watching Zach Sobiech’s video. We never met Zach, but having gone through the similar experience of spending some time with the crew of the “My Last Days” video, we felt a strong connection to him and his family after watching his video. I’m sure many of you felt that same way, and we are so sad about the grief and pain his friends and family are experiencing right now. We also have hope that Zach is now face to face with the God he loved and trusted, experiencing the glory we all live to experience one day. It was obvious from his video, that Zach was surrounded by amazing people who loved him very much, and that their loss right now is beyond anything we’ve experienced.

If you are new to Joel’s website, you can view a brief re-cap of his full medical history, including how he’s been doing since the video of him was made, under the “Meet Joel” link at the top of the website. A great way to recap our spiritual journey of faith is to read the “Mommy Theology” posts which are listed under categories on the side of the website, (you may have to scroll down a little to see them.) There are also photos, videos, and “Daddy Art.” ”Daddy Art” were some of my very favorite posts from the first year of Joel’s fight with cancer, when Ryan would regularly post some artistic representations of the things he was learning about faith. Joel is doing really well right now! The giant spinal tumor they discovered in his episode of My Last Days was treated with radiation and is now gone. (We had a scary month, where he was in constant pain, but we’re happy to say that he is thriving, happy, and learning new things all the time.) Although Joel’s spinal tumor is gone, he now has at least one small tumor in his cerebellum, he may have two, but the doctor’s are waiting to be sure about the second one. (We should know more about that in the next three weeks.) He is on an experimental therapy right now, the first non-palliative treatment he’s had in about two and a half years. He is tolerating it really well, but so far it doesn’t really seem to be helping.

Thanks for caring about our family, and our son. We post here fairly regularly, and Joel has a facebook page that another woman runs for him, she posts important updates from our site there, as well as lots of photos. Here is a link to that facebook page: https://www.facebook.com/pages/Im-Praying-Believing-for-baby-Joels-Miracle/289971121072

Mon. 11:04 am – Joel Update

amyg — Mon, 20 May 2013 17:10:18 +0000

Joel is staying on the trial. When we took Joel to his appointment today they told us that there is only one view of the MRI where the questionable spot measures wider than in the last MRI. Opinions are still split as to whether or not this questionable spot is a second tumor. So, the plan is to continue his treatment this week, and do a new MRI at the end of this cycle. (Three weeks from this past Friday, so probably June 7th. The hope is that the new MRI will either show definitive growth, or will confirm that there is no second tumor.)
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So basically, we still don’t really know anything, except that Joel and I are taking three more trips to Children’s Hospital this week for infusions.

Sat. 3:55pm – Joel Update

amyg — Sat, 18 May 2013 21:59:07 +0000

Just a few quick updates from yesterday. 1. Joel’s liver is fine. 2. We took Joel in to get a vitamin K infusion today, and found out later that his labs from today show his vitamin K levels were fine. (I guess yesterday’s lab results were a fluke?) The extra vitamin K is no big deal. 3. One of our doctor’s after seeing yesterday’s MRI says he is unconvinced that Joel has a second tumor. We’ll let them duke this one out and wait to find out what they decide.
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We went to a special event for dogs at the local mall this afternoon. Joel sat for about ten minutes and let a dog lick his hands. Basically, all Joel wants out of life is for dogs to lick his hands. If you want Joel to pet your dog he will mostly just put his hand in and around your dogs mouth. If your dog is not a licker, he may pat it a little bit, but you can tell this is a sad consolation compared to the sheer joy of being licked by a dog!

Fri. 8:33pm – Joel Update (MRI Results)

amyg — Sat, 18 May 2013 02:48:34 +0000

The tumor in Joel’s cerebellum is the same size, it has not grown or shrunk. However, there is a spot that was visible on the last MRI that appears to have grown. In the previous MRI they thought this spot was a blood vessel, however, in this MRI it is about 1-2mm bigger. It is a little confusing I guess because 1mm is the margin of error with MRIs. (At least I believe this is the case, I don’t feel completely solid on all the details.) Growth would mean this is a tumor not a blood vessel.
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If this spot is a tumor, and if it has grown, then Joel will automatically come off the trial. Several people are going to look at Joel’s MRI and come to a conclusion. We will know on Monday whether or not Joel comes off the trial. (The whole thing feels a little perplexing, but it sounds like, at least for now, the assumption is that this second spot is a tumor and that it has grown, but no one can say that definitively yet.)
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Phyll, who runs the facebook page for Joel, put it best when she said to me, “I feel like I’m missing a piece of a jigsaw puzzle.” I’m hoping by Monday we have a much clearer picture. The whole day was odd though, it did not feel like an MRI day at all. We never felt nervous. We never even really had that strong anticipation of the news we would get. I don’t know how to describe it except to say it felt like a non-event. Even the news we got today, both Ryan and I felt as if it was not significant, almost as if we had not gotten any news at all. Surely, Joel’s tumor not being any smaller, and the fact that he likely has a second tumor, and that the second tumor has almost doubled in size in six weeks, and that he will likely have to come off the trial should all feel like pretty terrible news. It just doesn’t. I am struggling to find a way to describe how I feel, because I don’t think I have ever had this feeling before. It’s as if those all just feel like facts, but I’m not analyzing the facts or ascribing any value to them. Those are just the facts, but they don’t feel important, even though I’m sure they should. It feels a lot like peace, but it’s hard to describe it as peace, because if it is peace it is a whole new level of peace I have never experienced before. Perhaps it’s just that after having three disastrous MRI outcomes in the past three years, anything other than all clear, or you son is about to die, feels insignificant. I think I’ll quit trying to explain it.
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One thing that felt a little significant is that Joel’s vitamin K levels are very low. Our doctor isn’t sure why he has this vitamin K deficiency but is starting him on a supplement and told us to call them right away if Joel has any bleeding. (Vitamin K helps the blood clot.) “Dr. Google” says it could be too many antibiotics or liver problems, but as we all know, Dr. google is unreliable and quite the sensationalist. So, we’ll wait until Monday to find out more and quit using the internet to diagnose Joel!

Fri. 4:03 pm – Joel Update

amyg — Fri, 17 May 2013 22:05:15 +0000

We got a phone call a few minutes ago letting us know that they were finished with Joel’s MRI. It was quite a bit earlier than we were expecting, but you’ll never hear us complain about that. We hope this means we might get our results a little earlier than we’re expecting as well, but no guarantees!

-Amy

Fri. 2:45pm – Joel Update MRI day

amyg — Fri, 17 May 2013 20:58:43 +0000

Joel is in the middle of his MRI. They already cleaned out his ears under anesthesia and removed his left ear tube which was blocked. Joel did so well today. About 15 minutes before they took him to the procedure room he started asking for water. So those last ten minutes he became a little grumpy, but really he was amazing considering he had not eaten anything.
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We think we will be done around 5pm, but they are going to call us with our results so we don’t know when we will know anything for sure.
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In the meantime, the OR nurses fell in love with all our boys and are letting spend the day in a closed playroom. This place is amazing, the kids are having so much fun. They even brought the boy two cans of sprite, four apple juices and almost a dozen packages of graham crackers. (A special treat since this playroom is usually for kids awaiting surgery, so it would normally be no food or drink allowed,) but they told us no one else will use this space today. They also have the boys a Lego set to keep. Needless to say we are feeling pretty spoiled.

Fri. 7:59am – Joel Update- MRI day.

amyg — Fri, 17 May 2013 14:02:19 +0000

Please pray for Joel today. His MRI does not begin until 2pm, and he can’t have anything to eat until after that today. The older he gets the harder it is for him to go without food before procedures.

Sat. 9:34pm – Joel Update

amyg — Sun, 12 May 2013 03:35:17 +0000

Joel said the word “cracker” twice today, the second time it sounded a lot like “graham cracker.” Just thought you’d like to know.

Fri. 4:18pm – Joel Update

amyg — Fri, 10 May 2013 22:25:24 +0000

Joel did not need a blood transfusion today! What a sigh of relief. I kept telling myself a blood transfusion is such a small thing compared to all he’s been through, and he’s already had plenty of transfusions, but I just couldn’t shake a general nervousness about it. I was so glad when I heard his hemoglobin was up!
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Basically, his hemoglobin went from 8.4 to 8.8 (normal is 11-15 I’m pretty sure) and 8 is the cut off for a transfusion. His white blood cell levels continued to go down, so it’s kind of cool the red blood cells grew! He still seems to have plenty of energy.
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His MRI is next week. I feel like usually we start to see all kinds of phantom symptoms a week or two before an MRI. We always begin to notice things that we worry could be tumor-related. Joel is just doing so well lately there seems to be no room for even imaginary tumors.
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Joel’s hair just keeps falling out. He has a big bald spot on the back, and it’s really thin on the top too. We’re shaving his head on Monday. I hope I don’t cry like last time, but I probably will. (The funny thing about a kid with no hair is, people can tell he’s sick. The bold ones ask, and they usually get an abbreviated testimony from me as a response. So, I guess a bald Joel brings glory to God because it gets me talking about the miraculous things we’ve seen.) Remembering that won’t stop the tears though.

Wed. 10:51pm – Joel Update

amyg — Thu, 09 May 2013 05:14:14 +0000

We noticed Joel had new bruises on his head and arm. Of course, on its own that’s not particularly surprising, since he hits his head to express frustration, but the chemo Joel is taking puts him at high risk of having low platelets. So we had Joel’s labs processed locally today (two days before his scheduled appointment on Friday.)
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We found out Joel’s platelets were fine but his hemoglobin (red blood cells) are just barely hovering over the limit for a mandatory blood transfusion. Since his doctors expect his counts to keep dropping, they have scheduled a blood transfusion for Friday during his regularly scheduled appointment. They will happily cancel the blood transfusion if his counts improve between now and then. Joel’s white blood cells are also very low, so we are on alert for fevers.
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It has been so long since Joel has had a blood transfusion that it is hard to remember how common place they used to be. This is definitely a big reminder that Joel is back in the realm of active treatment. This is not the palliative process we have been in for the last two and a half years. Joel’s next MRI is a week from Friday, so that will be our first indication of how well this medicine is working for Joel.
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The symptoms of low hemoglobin are dark circles under the eyes and paleness, low-energy, sleepiness and general lethargy. I have definitely been noticing some big dark circles under his eyes and paleness, but Joel is a giant ball of energy lately. He is trying to run a little bit, he’s not quite there yet but you can tell that his quick walk has a running-like energy and intent. Just in the past few days we have noticed that if we ask Joel to jump, he will immediately throw his arms up and stomp his right foot on the ground hard. He is pretty proud of himself for this “new skill!”
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It kind of makes me wonder how much Joel would be up to if he didn’t have low counts. Such high energy with such low hemoglobin really feels like God’s grace to us.