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When Joel quit breathing yesterday we weren’t super concerned once he recovered, because he has done that two or three other times when he became very upset as a result of a mild injury.
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However just now I was cleaning Joel’s nose, which he did not like and he was crying a little but pretty weakly, and he stopped breathing and passed out again. He did not seem overly upset, and I know he was not hurt, but it was as if he just couldn’t manage crying and breathing at the same time, like his breathing wasn’t strong enough. Since then Ryan just laid Joel down and Joel got a little upset and began to turn blue again.
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He is pretty pale right now and his lips fluctuate between very white and a little pink. We were wondering if he needed some oxygen, or if his lungs were shutting down. We emailed his nurse, because that’s how we communicate here, and she called us back immediately and told us to bring him to the emergency room. Honestly, we told her we didn’t want to, because we knew the emergency room would be more likely to admit him, and if the MRI tomorrow shows what we suspect it will, that there is tumor growth, we want to take Joel home to Colorado with us. We don’t want him stuck in San Francisco in-patient. She became very insistent that Joel must be stabilized, and that we would not be able to drive across the country with Joel as he is now. We know she’s right, but it’s really hard. We just wanted to keep him as calm as possible and with us, but we’re past that point I think, and it’s shocking because while he was getting gradually worse, he hasn’t been lethargic, he hasn’t had seizures, he doesn’t need pain medicine, the signs that death was especially imminent just haven’t been there, until yesterday and this morning. Our nurse reassured us that if necessary they will medically transfer Joel to our home hospital. It’s hard to be sure that would happen, or that we have time, but we know God is for us and God is for Joel.
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I believe Joel has a calling to fulfill here on this earth. I have prayed for his life enough to have a sense of his destiny and I do not believe God is finished with Joel’s earthly life. Every time Joel quits breathing, i pray for victory and life for Joel. I believe Joel will live and not die and we will see the glory of God, but please keep praying for us. We don’t know how to do this. We need the presence of God to be more overwhelming than our circumstances. Joel’s MRI remains scheduled for tomorrow.

-Amy

Joel will get an MRI at 8 am on Wednesday morning. If his tumors show significant growth he will come off the trial and we will return home to Colorado. If Joel’s tumors show no growth or have shrunk at all, we will restart his trial medication on Wednesday afternoon.
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It has been a rough day for us. We took the kids out to lunch, taking turns so Joel didn’t have to watch anyone eat, and we went down by the golden gate bridge area to find Fort Point. When we got there we found out it is only open on the weekends, but we had a nice walk around the bay. Ryan and I just needed to be out doing something because both of us felt pretty overwhelmed with everything that lays ahead of us right now.

As we were walking back to the van, Isaac and I were walking ahead, and Ryan called for us to come back. I turned around and asked him what he needed and he shouted desperately for me to just come back. I saw that he had Joel out of the stroller and was holding him. As I walked back I wondered if perhaps Joel had a serious seizure, or what else might be wrong with him. When I walked up Ryan said, “he passed out.” Ryan was holding Joel and saying his name and urging him to breathe, and I saw that Joel’s lips were blue and his pupils were wide. He was not responding. He was not breathing. Honestly, I thought Joel was dying, in Ryan’s arms, under the golden gate bridge. I began to pray and pray for him, and eventually he began to breathe again and his eyes engaged with us. When it was over, Ryan finally explained to me that when he was pushing Joel in the stroller, Joel slid down in his seat until his legs were hanging down, and Ryan, not able to see him, ran over his foot with the stroller. Joel cried so hard that he stopped breathing and then he passed out. When I heard his explanation I felt a million times better, because Joel has done this a few other times. If Joel is in extreme pain, or just gets very upset, he quits breathing. It is always terrifying, but it is something he has done enough times that I understand it now.
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We’ve talked to our nurses about it in the past, (when he was one he was crawling and fell onto his bottle and cried until he stopped breathing and I remember watching him not breathe, wondering how long we should wait until we call an ambulance,) our nurses reassured us that some kids quit breathing when they are upset, and that it is super scary but its just something some kids do. This is the first time Joel ever passed out from not breathing. Having no context, and just walking back to find him limp, blue and unconscious was pretty terrible. Of course, for Ryan, holding Joel in his arms, urging him to wake up and breathe, but completely helpless to fix him, was a pretty terrifying experience.
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There is no way to really describe what happened accurately, but I remembered thinking, “oh this is happening, here, now,” and then praying because if God would have Joel live, then Joel would live, but feeling surprised that it was out of the blue like this with no warning that we were at this point, but at the same time, we’ve always known that with brain tumors, you can be surprised, things can just shut down. Of course, that wasn’t what was happening, but it was all at once not as scary as I thought it would be and worse than I could imagine. Caleb was crying and crying. Isaac only began to cry just a little as things were getting better. As soon as things were settled I was able to explain to them that Joel has done this before and it has nothing to do with his cancer at all.
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We are tired now, and just as overwhelmed as we were this morning. One more day of waiting, then an MRI and we’ll know what there is to know right now.

Joel had a pretty rough last few days. Friday Joel drooled a lot and didn’t seem like himself, although he was doing better than Thursday where he moaned almost all day. On Saturday he laid in one spot, sleeping on and off until close to 4pm.  Anytime I tried to move him or sit him up he protested loudly, and when I let him lay there he was calm and didn’t cry or moan.  However, when Ryan came home at 4pm on Saturday he picked Joel up and Joel seemed to be glad about it.  They went to the living room and Joel perked up and even played some.  Then yesterday, we took a big adventure to go try out a church in San Francisco.  Joel loved being outside and seemed pretty energetic in his stroller and on the bus.  He pointed at things and signed.  He seemed pretty great yesterday, even riding a merry-go-round at the playground after church.  He was so much more himself that it alleviated our concerns that had been building over the previous few days.

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Today Joel went back to the doctor to start his next three weeks of medication.  This past week was his off-week and so I blamed part of his not feeling well on him recovering from being at a low point with counts and needing to recover from all the medicine.  Joel refused to even try to stand on the scale to be weighed today.  This didn’t surprise me because at home he won’t even let me try to have him bear any weight on his legs when I change his clothes or anything.  Just this morning Ryan and I were saying how sad it was that Joel can’t move himself anywhere.  When he wakes up in the morning he just moans for us to come and pick him up, because he can’t sit up or roll himself over or anything.  However, he stayed upright sitting on the merry-go-round yesterday just fine, so that core strength hasn’t declined, but Ryan told me that even last week Joel was willing to stand up on the scale at his appointment.  I’m surprised, since I though he hadn’t been standing for much longer than that.

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When Joel’s doctor examined him today he was concerned.  He thinks Joel’s face looks a little droopier.  I think that’s possible, but I’m not convinced.  He is concerned about all the strength Joel has lost. We had, under his advisement, been lowering Joel’s steroid dose very slowly, we were at .8ml twice a day (we started at 1ml twice a day.)  He said at the very least we should raise his steroid back up, but he thinks we should move up Joel’s MRI.  He gave us the choice between just raising the steroid and continuing with the chemo, and raising the steroid and scheduling an MRI instead.  He thinks that if the medication were working for Joel we would have seen some improvement by now, and since we have seen continued declines instead he suspects tumor growth.

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Part of me wants to give it another month, and do the MRI when we had originally planned to do it, but I know that if Joel is doing worse, it’s better for us to know and get him home to friends and family.  I suspect the fact that I don’t want to know, means I also suspect that the trial isn’t working and the early MRI means we will be going home.  We are asking to see if we can start the medication today as planned and still move the MRI up, not stopping the medication until we find out for sure that things are actually worse.

Joel seems a little better today. He sat up and played blocks with his brothers and dad for half an hour, and my heart almost burst with joy just watching them together and thinking perhaps yesterday was just a fluke. However, Joel is drooling a lot today and has resumed his place in daddy’s lap, moaning some, but today he can be pacified. A show can distract him even though he doesn’t lift his head to watch it. Ryan says that lately Joel feels like a rag doll, with no muscle tone at all.
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He still sits up on his own once we help him into a sitting position. I know I mention that a lot, but it feels like something. Almost all of his other physical skills have been lost, but we had a nice morning anyway, playing together.
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Joel does not seem to be himself today. Last night he was awake at 3 am, moaning angrily, until we put a show on for him. He didn’t want to sleep, but he was not happy. It was odd. Today has continued in much the same way. Joel is upset no matter what we do for him or with him. Even when Ryan is holding him, and scratching his arm like he likes and he is watching a favorite show he still moans angrily at us. He and Ryan finally fell asleep for a long nap which makes me glad. Joel seems more frustrated than in pain, but we honestly don’t know, so we may try some tylenol if he acts the same way when he wakes up.
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Just like I hate to take one good day and declare Joel on the mend, I hate to take one bad day and declare that Joel is deteriorating in some major way. So, we’re trying not to be too concerned yet, but we kind of are anyway. It’s hard not to worry that this negative change we see in Joel is permanent and indicative of tumor growth, but we’re trying not to say it, trying to wait. We are trying to remind ourselves that his counts are low, (ANC = 650) and maybe after three weeks of chemo he just doesn’t feel well because the medicine is rough on him. Maybe he’ll feel better in a few days. We hope so, because today has been rough.

We thought Joel’s swallow study was today. We found it is really Monday, March 24th, not Monday February 24th. So, his swallow study isn’t for another month. Pretty bummed. There were so many times this weekend where we felt so terrible that Joel couldn’t have food, and we just kept talking about how maybe the swallow study would just approve one or two foods so we could give him something, and it was slightly less depressing, because the swallow study was so soon. Joel shows so few signs of pleasure, enjoyment or excitement about anything anymore, and I know food is something that would make him really happy. Waiting a month is going to be really hard.

Joel had a seizure this morning, it is the first one we have seen since the last time we wrote about it (probably at least two weeks now.) It really seems like the seizures, which used to happen three or four times a day, are no longer going to be an issue for Joel, but we see one resurface every now and then like this.
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Joel continues to drool less, so we have a new swallow study scheduled for Monday. I’m hopeful that we will be able to re-introduce a few foods for Joel to enjoy, even if it’s just apple sauce and pudding, we would be so happy to be able to give Joel a few things to eat, because he gets so upset about food when he notices other people with it. I’m sure he doesn’t understand why we have stopped feeding him lately. He does enjoy when he gets his NG feedings, they must make him feel full. He holds his tube and likes to try to pull the formula up into the big syringe we use to push the formula into his tube.
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At Joel’s last appointment he waved at his doctor and his nurse. He played with blocks for fifteen minutes a couple days ago, and made excited noises as he threw a ball around. We love to see him being playful even though it’s not to the same level as before.
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Joel had a problem with a few of his labs because his sodium levels were too low. It was a serious enough issue that they considered lowering his dose on the trial, but they decided to let him stay at the same level, and new labs we did yesterday morning showed that his sodium levels had come back up to an acceptable level.

We saw some encouraging things with Joel yesterday, and it’s always hard for me to post good news after just one day, but then I remember that so many people are praying for these very things, and it would excite them to hear about it, as much as it excites us to see it, even if we are quick to remember that a single day is not always a great indicator of how Joel is doing.
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Yesterday, Joel sat up a lot of the day, with no back support. He sat cross-legged and could support himself sitting up. (We had specifically noticed how he couldn’t do this before.) Once again yesterday, Joel wanted to ride the rocking horse, but this time when we put him on the horse he actually rode it back and forth. (Last time as soon as he sat on the horse he wanted off, unable to support his weight well.) He made more efforts to get to toys he wanted to play with, he crawled further before getting frustrated at things that were still too far out of reach.
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A few times yesterday we heard Joel swallow. He would cough a little and then we would hear a loud swallow. Then we paid attention all day, and only barely saw him drool a little out of the side of his mouth that he had drooled out of some before he ever lost his ability to swallow, and his shirt was basically dry all day. (For weeks now Joel’s shirts have been soaked with drool because he can’t swallow his saliva.) We are cautiously optimistic that Joel’s swallow may be improving. We debated giving him a little taste of applesauce to see how he handled it, but we decided, wisely I’m sure, not to push it. We’ll mention it to his doctors. I’m sure if things seem much better over time we can order a new swallow study, but I know that doctors are very cautious about airways and that you pretty much have to pass swallow studies with flying colors to get an ng tube removed and solid foods started again.
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All in all, it was a very encouraging day.

Joel was released from the hospital yesterday. Ryan and Joel made it home to us by around 1:00. Ryan and Joel made cards for each of us that they gave us. Joel’s card to Elijah said “I head-butt you because I love you!” and his card to me said “You love me with all your heart, and I love you with all my heart, so we match.” They were very cute and funny, plus Joel colored on each card. The boys had made little cards for Joel and Ryan too, so we had fun doing Valentines Day together.
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Joel was much more playful when he got back from the hospital. We were sitting on the couch together and he wiggled down out of my arms so he could get off the couch. I could tell he wanted to go play with a pushing lawn mower toy that was in the communal living room, less than five feet away. I held Joel firmly by both arms to help him walk to the lawn mower, but he still only made it a few steps before he insisted on sitting down. Once he was down on the ground he tried to crawl to the lawnmower. I let him try this, and it didn’t work out. Joel could not crawl, and he was surprised he could not crawl. I think he was surprised he could not walk the way he wanted to as well. I brought the toy to him, but he was frustrated and made only the slightest attempts to play with it before he just laid down and cried. Later in the day, he made it clear to us he wanted to play on a nearby rocking horse, so this time Ryan lifted Joel from the couch and put Joel on the rocking horse, fully supporting him, but as soon as Joel was on the horse he wanted off. He never rocked at all, again I think he was surprised at his own lack of strength to support himself on the horse. He basically does not sit up unsupported well anymore. I suspect some of this weakness may be from his extended use of steroids, but it’s hard to say what might be muscle weakness from the steroids and what might be muscle weakness from tumor growth. (I could ask his doctors, they would probably have a better idea.)
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The doctors have paused Joel’s chemo until tomorrow, so he missed five doses. He is on an antibiotic at home now and tamiflu, but he does seem to be doing really well, not acting sick or even coughing as much.
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We were surprised yesterday by a package from some friends of ours that were full of little red wooden hearts (just like they hang on all the lamp posts of our hometown for Valentine’s Day.) Each heart had a personalized message for us from friends and family. It was so special and made our Valentine’s day, and each time I see them it reminds me how many people care about us and are praying for us while we are away from home.
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Strep Pneumo (Causing a slight bacterial pneumonia), Flu A Virus, Adeno (Cold) Virus (Possibly causing his red right eye and ear infection).
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Joel’s tested positive for all of them.  They’re sending off a test for pertussis as well.
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He’s been doing well, no new fevers.  If every thing goes well we could be out of here by Friday.
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We’re holding off on Chemo, to preserve what immune system Joel has remaining to fight these viruses and his infection. But holding off should not jeopardize his trial enrollment since these sicknesses are not a result of med intolerance.
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Again, pray things don’t complicate.
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Ryan