Joel was so great today. No new fevers. Much less coughing.
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This evening, Joel was excitedly trying to follow his brothers outside, and he tripped over the door. He fell down, and when we ran out to pick him up, he said “arm” holding his arm, because it hurt. Joel was fine, but we were so surprised to hear Joel say a word we had never heard him say before, without anyone prompting him. He said “arm” in context, and frankly, I had know idea he could even identify any of his body parts. (He will sometimes correctly point at my nose or mouth or eyes when I ask him, but he misses as often as he is correct.) I know it seems like a small thing, and of course it is, but at the same time, developmentally it feels significant. I’m pretty proud of my little man and his surprising new word.
I forgot to mention that Joel’s next MRI is scheduled for Monday, June 3rd. It’s another late afternoon MRI which means a long day without eating for Joel.
Chemo weeks are always rough. Joel gets one week of chemo and two weeks off. This is an on-week, so we made the one-hour drive to children’s hospital on Monday to get our at-home pills. We gave those each morning at 10 am, and then yesterday, today and tomorrow we go back to children’s hospital for his iv infusion of chemotherapy. It is usually two hours of appointment and two hours of driving, which is not so bad the first day, but by Friday evenings, I’m always exhausted. (Joel hangs in there better than I do, but three days of no afternoon naps take their toll on him too.
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Today, when I put Joel in the van he was fine, when I got him out at the hospital an hour later, he was burning up. His head was so hot that I knew he had a fever. He was shaking uncontrollably (something he does when he gets fevers.) His breathing was quick and loud (another thing that he does when he’s feverish.) The combination was pretty unsettling, especially considering how quickly it had come on.
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Once they had us settled in for our appointment, I felt better. Joel looked awful, but they took a blood sample to culture for infections, they did a nasal wash to check for flu, and gave him an IV infusion of a 24 hour antibiotic. (His temperature ended up being 103.8 degrees.) His oxygen saturation was a little low, so they kept checking his blood pressure and oxygen levels. (About half an hour after they gave him tylenol he perked right up, and has seemed fine ever since.) We did have to get a chest x-ray too. As you can guess, all the extra test slowed our day down quite a bit, and we were at the hospital for four hours instead of the usual two.
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Joel is still acting fine and his fever has not returned. We’re so glad he seems to be feeling better, but at this point it’s a little hard to imagine driving back to Denver tomorrow. (It’s times like this I remember all the families that drive to the Children’s Hospital from Wyoming or Nebraska.)
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.
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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.
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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
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.
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!
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!
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
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.
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.
