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It was wonderful to be able to go to the doctor on Monday and tell them how much Joel’s interest in standing and walking had improved. We learned on Monday that the steroids can still be helping Joel for up to a week after the stops them, so it is possible the improvement we saw was due to the steroids, so now, we once again, wait and watch to see if Joel gets worse or better from here.
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We received further clarification on Joel’s MRI, which is that the MRI actually showed Joel’s spinal tumor completely gone. The spot that the other doctor showed us as “the tumor” was actually just radiation changes. So the spinal tumor is completely gone. Praise God! What’s more he reiterated, once again, how amazed he was that the tumor had responded so well to the radiation. We weren’t really sure what to make of this since all three times we’ve done this kind of radiation the tumor has disappeared. So, finally we asked, “What had you expected the radiation to do?” He told us that AT/RT tumors are usually very resistant to radiation and that the best you usually see is tumors that shrink a little and then stop. No one had ever told us this before, and no one had ever acted surprised before when the other two tumors died, so I asked, “Is it just tumors in the spine that don’t respond to radiation as well?” He said, no, that didn’t make any difference. So basically, all along, starting in January of 2011, when they did concentrated radiation of Joel’s 2nd tumor, again in August of 2011 with the 3rd tumor, and most recently in March this year with the sixth tumor, no one expected the radiation to kill Joel’s tumors.
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It was wild to us that this was the first time we were even aware that something amazing had happened with the radiation, which had all seemed pretty run of the mill to us. Our doctor said something along the line of “it appears its done it again,” so perhaps the first couple times it was thought of as unusual but great, and three times straight having such incredible responses to radiation (for Joel’s type of tumor) was starting to feel rather remarkable and worth mentioning. Of course our doctor just marvels at how Joel’s tumor happens to be so radio-sensitive. (He doesn’t think of this as a miracle, but rather as an AT/RT variation that is for whatever reason much more sensitive to chemotherapy and radiation.) If you’re curious what I think…. MIRACLE!!!
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Still, I remember praying that Joel’s tumor would help them come up with better treatments for future kids with AT/RTs. While nothing concrete has happened along those lines yet, Joel’s tumor is one of five that is having every pair of base chomosomes fully mapped, genetically. (This has never been done for AT/RTs before.) Keep praying for wisdom and supernatural insight for the researchers. It is so heartbreaking to be given a diagnosis for your child where the treatment is so unsuccessful most of the time. I want parents to be spared that kind of terrible news, even if they will never realize what they were spared from, because even being told your child has a cancer with a great track record for treatment feels like the end of the world, and you never start to think of how things could have been worse. I hold out hope that the doctors may find something different in Joel’s tumor that helps them develop a new strategy for treating AT/RTs, but research in the lab is fast and developing treatments outside the lab is painfully slow, so please pray for the researchers (our doctor is a major researcher himself, he runs the lab doing these studies.)
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We are planning a vacation for most of June, and it is really nice to feel like we will be free to go, with no medicine to deal with, assuming Joel’s walking doesn’t get worse. (We wouldn’t mind a few prayers for that too.)

Friday afternoon we were told to go ahead and stop the steroids since they didn’t seem to be helping, and they made us an appointment for Monday afternoon to have our main doctor examine him and discuss the option of Avastin and whether that’s the best next step for Joel, or whether we should just keep watching Joel carefully and waiting.
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After a few days of Joel on steroids, we were pretty thrilled at the prospect of getting him off the Roid Rage Rollercoaster! Joel is such a wreck on steroids we really can’t go anywhere in public. Even at Caleb’s soccer club I found myself explaining to mom’s I’d never talked with before that Joel was on steroids, because otherwise how did I explain my son who just wouldn’t keep screaming? Even though I could not wait for Joel to return to his joyful, pleasant self, it was a little scary for me to take him off the steroids? Every decision we’ve made with Joel in the past week or two has been based on hunches. Sure, Joel seemed to not be walking as much, but was he dramatically worse? The steroids didn’t seem to be helping, but then again, Joel wouldn’t do anything we wanted him to do on steroids so how did we really know they weren’t helping him? I did not want Joel to risk permanent injury to his spinal cord because we weren’t sure what decision to make.
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Saturday was the first day fully off the steroids. Joel’s mood improved a lot, but by the end of the day, he only wanted to cuddle with daddy and lay very still. Ryan was certain that Joel was exhibiting worsening symptoms of radiation necrosis. I suspected he was just a sleepy three-year-old, but still we both wondered if we would end up having to put Joel back on the steroids today.
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When we woke up this morning Joel was standing up in his pack in play, bouncing from foot to foot. He definitely seemed happy and we didn’t see any signs of pain. He was active in the nursery at church, and an angel at our big mother’s day lunch, (so sweet, and not one bout of screaming!) After Joel’s nap, he stood up on the couch and “jumped” (he bends his knees a little and flails his arms) and erupted into laughter when mommy jumped too! After this we even got Joel to walk holding just one hand (something he hasn’t done in at least a week maybe longer.) Then, Joel let go of our hands and walked maybe 10 feet.
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It was a pretty wonderful mother’s day. The best part of everything is that Ryan and I both feel like we finally saw something definitive with Joel, and that is that he is not in pain and is regaining his standard level of activity. It feels so much better going into tomorrow’s doctor’s appointment feeling like we have something concrete to stay. I spent the whole week so confused about what Joel needed from us and how he was doing, and it is so nice to feel like maybe he is recovering from whatever was slowing him down!

Well the steroids have officially kicked in. Joel screams when he wants help, he screams when you offer help, and then screams even harder when you give up and stop trying to help. He is happy if I let him dump out my purse, or pull things out of the cupboard, but then screams when I won’t open every package that looks remotely like food to him. So for the most part, I am letting Joel make messes and feeding him fairly often, but not as often as he would like, which would be a constant non-stop buffet.
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Joel does not seem to be any more interested in walking than he was before we started the steroids, so I told our medical team that this morning, and they will get back to me about whether this means he needs more or less steroids.
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This too shall pass.

So, I think I was wrong when I said our main doctor was out of town yesterday. I think he was just not in the office while we were there, possibly in the lab, or just off that morning! We were able to talk to him today, and it was so nice. I really can not imagine a better doctor for Joel or for us! He answers all of our questions so thoroughly, explaining everything well without talking down to us, and perhaps most importantly, he is really easy to read. He is happy when the news is good, and sad when the news is bad, and you never walk away from talking to him wondering where things stand.
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For example, yesterday Ryan and I were both a little disappointed that you could still see the dying spinal tumor in the MRI. From our past focused radiation experiences the tumors disappeared really quickly. Our doctor told us today that the spinal tumor responded exceptionally well to the radiation. He said we couldn’t have asked for a better response. I think he even said he was amazed. I asked him about the spot in the brain, and he said he had no idea what it is, and couldn’t treat it until we know more from the next MRI, so as to whether that is a tumor or not, we’ll still just have to wait and see, it’s anyone’s guess at this point. He did say we were in a really good place in terms of tumor growth!
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I feel like before I talked to our doctor I was really unclear about exactly what radiation necrosis was and what it meant for Joel. I’ve always heard it referred to as dying tissue and I think I sort of thought of it like a flesh eating bacteria that just killed more and more tissue as it spread. The impression I have now (and I think this has been explained to me before but I just never had a clear idea about it) is that as the tumor dies it swells, as does the surrounding tissue. All radiation involves some necrosis, and it is impossible to predict whether the necrosis will go away on its own quickly without causing problems. or will be rather extreme. swelling a lot, and damaging delicate areas as it swells. The necrosis should stop on its own, but if it damages things through its swelling, sometimes those damaged things don’t recover. Our doctor said he was going back forth about whether to treat Joel’s necrosis or not, because if it was in his brain it wouldn’t worry him at all, but the spinal cord is such a small space, (there just isn’t much room to accommodate swelling.) This is why he is recommending this short strong burst of steroids. If, as we wean Joel off the steroids next week, he does well and we see no worsening symptoms then we will assume the necrosis was minor and has resolved itself. (Although we will continue to watch diligently for any new or returning symptoms.) If, as we wean Joel off of the steroids next week, we notice a dramatic worsening in his symptoms, we will know that his necrosis is more serious, and it will be an indication that he needs to be treated with Avastin. (A drug that, for a good portion of kids, actually reverses the necrosis.)
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Joel can be prescribed Avastin, but most insurances won’t cover it, so instead they will try to put Joel on a study for avastin (assuming he needs it.) The study would then pay for the medication. We hope it doesn’t come to this, but it is nice to know there is some hope if things get worse. Honestly, our doctor said there was really no reason right now to think Joel will need this. So, we just have to wait and see. (It turns out we’re pretty good at “wait and see” lately!)
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Finally our doctor told us that he thinks it is time to stop the etoposide. He really does not want to risk Joel developing leukemia, and neither do we. He reassured us he has a few ideas of other things we could try if Joel show positive tumor growth. So, for now, Joel is off of all chemotherapy! If Joel never has another tumor we will never give him any more chemo! (Wouldn’t that be unbelievable at this point?) We will have another MRI in around two months, and if that mysterious spot on his brain has grown or if any new tumors are detected then Joel will be put on some new chemotherapy treatments.
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I’m a little shocked right now. I’ve wanted for a couple years now, to be able to just trust God for Joel’s healing and not rely on all the medicines I didn’t really think were helping him, but I did not have the conviction in my heart to justify taking him off of the chemotherapy. I always suspected that in order to see God fully heal Joel we would have to reach the end of medicine, I thought this might happen through Joel getting worse and dying and God rescuing Him at the last moment. I always thought I would be up for this because I wanted God to have the greatest possible glory out of this situation, so if a big dramatic 11th hour healing was the best way to glorify God I thought I was all for it. I think I was naive. I have been reading Noah’s website and watching remotely as his parents actually walk with Noah to the edge of eternity waiting for God to give them healing for their son. No part of me wants to experience that now. I trust that if I am called to, God will provide all the grace I need, but on this side of that supernatural grace, I want no part of it. I am over my desire for a big dramatic ending to Joel’s fight with cancer. I am tired. I am so ready to move into a new season of life. I can not imagine a less anti-climactic ending to Joel’s fight with cancer than just to take him off the medicine, always watching and waiting for some new sign of cancer’s return and never finding one. I am finally really excited about the possibility of an anti-climactic resolution to cancer. I have spent years thinking, “God is doing something so huge, so great, and in the end His glory will be so amazing, and I will know what this was all for, and it will be incredibly important.” Right now, if we never have to give Joel any more chemotherapy and he gets to stay here with us, and our family gets to move on to new, less terrible adventures, that sounds pretty great to me, even if it means I will never really know the significance of this whole fight.
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Of course, it is not my choice. Joel could have a new tumor in two months, or he could never have another tumor at all. God holds the keys to life and death, not me. We are going to spend a little more time mastering the art of living in today, and letting God worry about our future. We will certainly update about how Joel does on the massive steroids, and we’ll let you know how the necrosis resolves itself or doesn’t, but all in all, I think our doctor was right, and we are in a good place for now. Of course it would be great to have nothing hanging over our heads, but that isn’t really the nature of a fight with cancer, as I’ve experienced it. There is always some looming threat that may or may not materialize, and we will worry about those things if they ever happen but not before. This is a good season and we will enjoy it.
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Our precious friend Noah and his family are not in a good season. Their faith is being stretched as far as it can be. They are walking through the valley of the shadow of death. They are trusting that God is good even if what is happening can not be called good by any of us with our limited understanding. I really believe that they have made their peace with heaven, even as they continue through faith to battle against sickness, disease, pain and death. I know they know how amazing heaven is, and I know they still wait for a miracle that would allow their son to stay with them and put off heaven until he is much, much older. If I am ever forced as close the edge of eternity as they are right now, I hope I can follow their example of wisdom, faith and grace through God’s great strength. Please pray for Noah. Pray that he will live here on this earth with his mommy and daddy for decades and decades. Pray for him to be healed, and made whole, with no more pain. Pray for peace for his parents. Pray for everything the Holy Spirit places on your heart, and pray for them the way you would have prayed for Joel had our news been worse yesterday. Thank you. www.prayfornoah.com

I just saw that I missed a call at 3:30pm. The voicemail said that our main doctor, who is out of town, reviewed the MRI and did see some radiation necrosis (healthy cells dying in addition to the tumor that the radiation targeted) so they have asked us to start Joel on a dose of steroids 4x what we have ever given him before. We have given Joel 1mg twice a day a few times before, and now we are supposed to start giving him 4mg twice a day.
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We thought Joel was a handful on steroids before, so I’m guessing we have no idea what we’re in for! They are looking into adding him to a radiation necrosis study with a medicine without the nasty side effects of steroids. (Avastin) I am not really sure what the necrosis means, if anything, for Joel long term. I will call tomorrow and try to find out!
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The good news, at least for me right now, is that our doctor said nothing about the mysterious spot on Joel’s brain. I’m hoping this means that he really doesn’t think it is anything at all, but that’s just speculation on my part!
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The voicemail also confirmed what we suspected, that Joel is getting close to his limit of how much IV etoposide he can safely have. Too much IV etoposide guarantees the development of Leukemia. I asked if the Leukemia that etoposide patients get is very easily cured, and the answer was no, it usually involves bone marrow transplants, so it sounds like we can give Joel one or two more rounds of etoposide and then we need to stop. Part of me would love to have a good long chemo-free stage of life, and part of me wonders if I am at all prepared to watch Joel run out of all the medical solutions that appeared, at least on the surface, to be very effective. I have long suspected that God has been moving on Joel’s behalf and that the various treatments were not the answer, but I’m not sure if we’re ready to test our faith without a safety net. I feel pretty brave with my training wheels on!

Joel’s new MRI results were pretty good. They saw no evidence of necrosis are the MRI, but they also let us know that necrosis is always very hard to see in the spine. The MRI showed the outline of the tumor in the spine that we treated with radiation, so it is still there but it is harder to see, and so we have every reason to believe it is dying. There was one tiny spot in the brain that was unusual. It was small enough, and picked up no contrast, that they said normally they would make nothing of it, but the tumors Joel has had in the past have never picked up much contrast and can sometimes be very difficult to see, so it is basically a wait and see spot. If the next time we have an MRI it is bigger then we will know it is a tumor. If the next time we have an MRI it is the same size or is gone, we’ll know it was nothing. Honestly, it would have been wonderful to have a perfectly clear scan, but at this point to have two things that no one was very concerned with, and essentially no new tumors since October is incredible.
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The reason an AT/RT recurrence is automatically a terminal diagnosis is because AT/RTs spread so quickly and grow so fast that they can not be treated effectively. A long gap of no new growth looks like a really good thing to us, and mostly it means two more months of “normal” life. As “normal” as life can be with at-home chemotherapy in the mix, but really things have felt very good for our family lately and I’m thrilled to know that, at least for now, there’s now reason to expect anything different!
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Praise God for a good report! I’m happy to consider this a clear MRI, even though there are a couple things to keep our eyes on!
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The doctors suggested putting Joel on some steroids just in case there was some necrosis happening we couldn’t see, but they also explained to us that there is no medication they could give that would stop necrosis. (All the medicines they could give would just treat symptoms.) They also explained that necrosis symptoms are rarely permanent. So, since everything we’ve seen has been very subtle, I’m willing to chalk it up to Joel being moody, and us being a little too nervous. We decided against the steroids, but we will of course let them know if things seem to get any worse.
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We are so thankful today! The fight continues!

Here we are again. We come here every 8 to 12 weeks and we wait for the MRI results to declare what the future holds. Like some strange version of groundhog’s day, if we see a shadow, there will be 8 more weeks of winter. If it’s all clear, then we are blessed with 8 weeks of spring. Until of course, the cycle begins again, waiting for the doctors to tell us what the mighty MRI has to say.
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I know it really isn’t something to be flippant about, Joel’s MRIs are important; they dictate his treatment and early detection has prevented many disastrous outcomes. It’s just that I also know that we will have MRIs in our lives for the rest of Joel’s life. No matter what point of life Joel is in, my heart will face the same challenge.
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Yes, the MRIs are critically important, but God’s word is still more important. We have had MRIs declare doom over Joel and then watched as God declared life over Joel. We have had so many clear MRIs in a row that we were ready to declare “It is finished,” but the whole time God knew the fight was just beginning. I still wait for the day when the results of the MRI do not sway my heart in the least because I am so much more in tune with the only voice that matters, God’s voice, speaking over my son, whom He loves. That day may never come, but I will have lots of opportunities to practice the “Be still, and know” that I long to perfect. Every eight weeks, like clock work, I get to decide who to listen to, and on the rare days where we get a totally clear report, with no caveats or little things to keep an eye on, the joy is that much sweeter, and the resting is so much easier.
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So, we sit and wait, for the doctors to tell us how to feel. In just a few short hours our lives will change again, but hopefully we will remember that God always gets the final say.

Joel’s MRI started right on time. The port was pretty sluggish and the anesthesiologist did not act convinced that it would work for them. (His port is always very positional and we have to really mess with it a lot at home to get it to work.) I’m hoping the port not working very well won’t slow everything down today!

As many of you know, our next MRI was scheduled for May 16th. However, in the past week, Ryan and I have noticed that Joel seems less willing to walk. It is wild that I last wrote about how steadily Joel was walking about ten days ago. (If there is one pattern we have seen with Joel it is that almost every major accomplishment is directly followed by an attack of some kind; of course, it is also true that almost any terrible news we get is followed by a miracle of some kind.)
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For the past week Joel seems to get upset if we set him down. He doesn’t want to walk with us, and if we hold his hands to help him walk, he does ok for several steps and then kneels down, clearly finished. For most of the week we ignored it, thinking he was just tired, or didn’t feel like walking. (We try not to push him too hard if he doesn’t seem interested.) Eventually it had just gone on long enough that we mentioned it to each other. We agreed he did not seem as willing to walk as he had been just the week before. It was such a subtle change, even know, it’s hard to be sure we’re not imagining it because the upcoming MRI was stressing us out! However, when the tumor in his spine was causing him not to want to walk as much it was this subtle too.
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Just yesterday at church a good friend said, “It must be so hard that Joel can’t tell you how he’s feeling.” Ryan and I quickly disagreed because in many ways it is a blessing that Joel is not verbal yet. We have read the accounts of other cancer patient’s Joel’s age who have developed normally and can talk quite well, and it just seems like it would be so much more. heartbreaking to hear your child in fear and pain. We don’t believe Joel even knows he is sick, and we have been spared a lot of very difficult emotional challenges that would come along with having to explain everything to him. However, situations like this last week, where we just don’t know if Joel is hurting, or tired, or having some other problems because he can’t tell us what’s happening with him are very challenging. So, our friend was right, it is hard that he can’t tell us how he’s feeling. It is hard not to be able to get to know Joel like we could if he were talking, even if that meant we risked losing even more if he were to lose this fight.
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We determined to call first thing this morning to see how we should proceed. We suspect that Joel not wanting to walk could be some radiation necrosis, which can be reversible if treated pretty quickly. It could also be tumor, but of course we hope not, and it could be nothing at all, and just Joel being temperamental, or us being paranoid, which would be incredible news! The doctors found an MRI opening tomorrow, so Joel will have an MRI at 8:15 tomorrow morning, and we will know a lot more then, for better or worse.
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Just before Ryan woke me up to call the hospital this morning, I dreamt I was at the hospital, waiting for them to take a look at Joel about the suspected radiation necrosis, and Joel began walking independently again, but then he took off running, and he’d stop and bend down and turn his head looking for his brothers, and then take of running again. He even began to jump up in the air and land on his feet. In my dream I was astounded and went to tell them, never mind, I guess Joel is walking just fine! Then I was woken up, and the dream had felt so real, I had to convince myself that I really had to call them still. I would say it was a bit of a bummer, except the dream was so wonderful, and reminded me that God can change our circumstance any moment and has many times before!
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In the meantime, we are putting Joel back on steroids. Double the dose we were doing before. We hate this, but hopefully it’s just for a day until we can make a plan for what to do next. The medicine they use to treat necrosis acts like a very strong steroid, but without all the nasty side effects.
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So, the MRI is tomorrow, and frankly I’m a little relieved. Normally I don’t start to really dwell on upcoming MRIs until the day before or the day of, but I was already driving Ryan, (and anyone else who would listen,) a little crazy with my constant talk about the MRI which was still 10 days away.
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My thoughts lately have been on the strength of God, and how He is mighty to save! (Mostly for sweet Noah who needs a miracle! But also for Joel.) I keep returning to Psalm 18. An amazing Psalm about our Fierce God who save us! When you are facing death, like Noah is right now, you need a Fierce God who hates cancer and loves you, and shakes the earth to defend you! Please continue to pray for Noah, we know he needs to be rescued, and we’ll know tomorrow if Joel does too. (You could even read Psalm 18 while you pray for Noah. ) www.prayfornoah.com

Our next MRI will be Wednesday, May 16th. We will be sure to post updates when we find out results that day. Looking ahead we never know what to expect, but looking back God’s faithfulness is so obvious. Pray for us to remember that God hold’s Joel’s future, just like he holds all of our futures.
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Joel just finished two weeks of chemo today. This session felt especially long since we were having problems with his port at the beginning, so instead of the normal two weeks on and two weeks off, we had two days on two days off, three days on, two days off, and then two weeks on, two weeks off. (Only two of those “off days” was Joel de-accessed.) It felt really good to finish up the chemo today and de-access Joel and put him to bed needle and tubing free. We are planning on going swimming tomorrow to take full advantage of Joel’s off-chemo state!
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Joel walked really well on Thursday afternoon when I picked him up from pre-school. He wasn’t even holding on to his shirt for self-assurance. Little things with Joel make me unspeakably proud, and that is one of the many unexpected blessings that come with the big challenges we’ve faced!