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.
Joel said the word “cracker” twice today, the second time it sounded a lot like “graham cracker.” Just thought you’d like to know.
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.
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.
Joel just finished his second cycle of chemo on the new drug trial. He can really only do about three cycles before we have to decide whether or not to keep him on the trial since it will be past the safe limit of etoposide for him. So far he is doing well. He has tons of energy, but his hair seems to be falling out pretty quickly. Joel’s next MRI will be May 17th in the late afternoon.
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We’ve noticed that Joel is more coordinated, specifically any time he starts to lose his balance he corrects himself now. I’ve watched him catch himself several times after short stumbles. Joel has also learned a new word, “Hi!” He says it pretty enthusiastically to me on a fairly regular basis. I’ve also heard him say it to Elijah, but no one else so far.
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Ok, here’s how I could use your help. Back in October of 2012, Ryan quit working for an income and began to work on art projects that he and I both felt called to create. The first was the children’s book based on Joel. The second is a video game called, “That Dragon, Cancer.” It is an artistic game that combines poetry, music, narrative and art as it tells the story of our family’s experience with cancer. In the demo scene of the game the player is placed in a hospital room where Joel is dehydrated and thirsty and won’t quit crying. It’s fairly intense. Ryan and his partner Josh were able to take the game demo to GDC a major conference for game developers. While they were there they were able to minister to lots of people who played the demo. They also got unbelievable press and “That Dragon, Cancer” is making a big splash in the world of Indie Video Games.
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Here’s where we could use your help. Right now they are in a contest where the top 10 entries will get free passes to E3, another really big gaming conference. We were all so shocked at the doors God opened for them at the last conference, and free passes to this conference would save them $2400. They won’t be able to go if they don’t win the tickets. We have been hanging on to 10th place by the skin of our teeth, but I think if everyone who loved Joel would help us out by voting we could climb a few spots and secure the tickets. All you have to do is 1. Click on the link below. 2. Click the blue vote button and enter your email address. 3. Go into your email and confirm your vote through the email they will send you. It is really simple and fast, but surprisingly few people have been willing to do it. (We only have around 350 votes all together.) I’m sure people think, oh yeah, maybe I’ll do that, but they never get to it. Would you drop everything and spend five minutes to help our family? We would really appreciate it. Here’s the link: http://indiescrashe3.com/nomination/A03FCD8F-23B4-03AB-C27C-D7658B47B62C
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Ok, so I’m sure some of you want to know something about the game you just voted for. (Also one vote per person please, but feel free to beg your friends mercilessly to vote!) The contest ends May 15th, (Midnight Pacific time.) Ok, here’s the website for “That Dragon, Cancer” you can look at the concept art and read the really cool press it has gotten. We’re really proud of it, especially because we have been living on our savings for seven months now to be able to work on this. http://thatdragoncancer.com/
Also can you believe we’ve been doing something for seven months that I never mentioned here?
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Thanks for your votes, I know it is a small thing, but it is really a big support to us.
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After all my long ineloquent description of the game, I realized I should just quote Ryan “That Dragon, Cancer is a video game composed of pain and hope. It is a story of my son. It is a script written day by day. It is life that moves us space by space, propelled by a mystery we call grace.”
