Archive for the ‘ Joel Update ’ Category

We are still waiting to hear the final plan to get us all home. The last we’ve heard they’re having a hard time getting the medical flight approved by the insurance. If we took the southwest flights home, Joel would need oxygen, but to fly on an airplane you needs specially compressed oxygen which costs around $500. Since we know the insurance won’t pay for the specially compressed oxygen, the social work team at the hospital here said they would pay for the oxygen; however, the earliest they can get the oxygen is Saturday. They also said that if Joel and Ryan fly separately on a medical flight that my friend who came out to help us could fly home with me and the other boys using the ticket we would have used for Ryan, so I would have enough help to feel confident about the flight home.
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Yesterday evening, as the kids and I were leaving, Joel became upset, and about 30 seconds after we left he cried until he held his breath and passed out again. Ryan was much calmer this time since we’ve seen this happen a few times this week, but the nurses were pretty concerned as Joel’s oxygen saturation levels dropped down to 10, and a nurse was just beginning to insist that they call the doctors when Joel woke up and began breathing again. Even though Ryan was not as panicky this time, it did make him realize just how fragile Joel is right now, and it made him really want to take Joel home on the medical flight, so we know that if he has special needs while we’re flying there are people available to help him.
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Joel seems mostly calm and happy. He has really loved holding his tiny stuffed dog, and watching Barney. When the boys and I were visiting yesterday we played in-room bingo and Joel won a craft kit, and spent a lot of time after that playing with markers until his hands and belly were covered with colorful streaks. Eventually he got frustrated that he couldn’t quite control the markers as well as he wanted to and threw them on the ground. His kit had a small bottle of white glue in it and he picked that up and pretended to pour it into his hands and then rubbed his hands together to “wash” them a few times. Joel also has moments where instead of wanting to play he stares off, very still. We don’t see him sleeping more than usual, but he does have his calm wide-eyed moments. Fairly often he will make little sounds and point his finger up in the air, the sign for “where” that he used to use a lot. He used to point his finger and say “where’ditgo.” He doesn’t say any words now at all, but he seems to point his finger up in the air anytime he wants to chat with us and communicate back and forth. So, when he points his finger up, I tell him about things in the room, or just talk to him more, and when I pause he points his finger up again, fulfilling his end of our conversation. He is still very adamant about wanting to be held in certain ways and wanting to have his arms scratched. I’m no longer convinced that Joel will be able to come off of oxygen as he seems to need it, and even this morning his saturation fluctuates between 92 and 95 instead of staying steadily at 100 like he did all day yesterday with the same amount of assistance.
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We will post here when we hear any plans for getting us home. We still hear talk about today or tomorrow, but it wouldn’t surprise us if it gets pushed back again, even though we know people are working hard to put a plan together for us.
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We will not fly home today, the plan is to fly home tomorrow. We’re actually pretty glad about this because we felt like we had a handful of loose ends to tie up and that the whole process would be less stressful if we had a little more time. We have learned that our insurance will cover a chartered private medical flight for Joel and Ryan, but they will not cover the cost of on-board oxygen if Joel were to fly Southwest with us. (Sort of silly since oxygen would be about $500 and I suspect the chartered flight will be over $100,000.)
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Our doctors are still trying to figure out what makes the most sense, so no plans are solid yet, but honestly if we fly out tomorrow morning like they expect, or even if it takes them until Saturday to get things all squared away, we feel pretty ok about things. A good friend came out and is helping us get things packed up and staying with the kids so we can stay together with Joel at night, and that has helped us feel very relaxed about the whole process.
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Joel is doing really well. He is still requiring a very minimal amount of oxygen. His energy levels are very low but he is very calm. He occasionally perks up and plays with things like the room phone or little stuffed animals.

It’s hard to believe we could be home tomorrow night! If Joel is approved to fly commercially with us we will likely be home by tomorrow night. If we determine that he needs medical transportation home then it might Friday instead, but either way things are moving quickly. We feel so supported and taken care of, and we’ve had so many offers of people willing to help us get our van home, so we are sure that will work out just fine. So now we just pack up, and wait to see what method of transportation Joel will take home.
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Joel continues to need some oxygen but he is calming down and has even fallen asleep. He was fairly agitated a few hours ago with his heart rate up above 180 for hours but now it is down to 132 and he is requiring less oxygen and doing better. Before he fell asleep he chattered at me a little bit and wanted to hold the room phone and open and close the room service menu. It has been reassuring to see him acting more like himself in the middle of what has otherwise been a fairly shocking day. We found out that Joel tested positive for flu again, so he either never fully got over the flu he had two weeks ago, or he has it again. Now we suspect that the dramatic respiratory issues we’ve seen have been the combination of a weakened immune system with flu and anesthesia. We are hopeful that as the anesthesia wears off his respiration will improve and he might be able to come off oxygen.
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Our greatest prayer request is that we can get Joel home safely. There is a kind of panic I’m not used to experiencing that settles in about him not doing well here. I just want to be home where family and friends can visit him. Last night when I stayed awake worried about his breathing it was so unlike me. Ryan is the resident breathing police in our home. He’s the one who checks on the kids while they are sleeping. I’m the one who says, “what are the odds you’d check in on them in the exact moment when they could be resuscitated, if they stop breathing in their sleep, they die and you can’t prevent it by looking in before you go to bed.” Yet, there I was, with my hand on his chest trying to will him to keep taking each new breath. I know when we are home, and everyone has gotten to see him again I can relax again.
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In many ways I feel like my spirit is being set free to fully believe God, in a way that was difficult for me while he was still on a trial and while we were away from home. When there is no hope but God, part of me gets excited because, now, at last, conditions are ripe for a miracle. God is our only hope, and He is such a better hope than a stage one trial. For now, until we are home, seeing Joel unwell makes me think, “no, not like this, not here, no, no , no!” but at home even if he is doing just as bad or worse I know I will be able to say, “God, if you will save Joel, then he will be saved!” and rest knowing that God loves Joel, hates cancer, and loves to heal his children.
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I am going home, and we will see now how God finishes the story of Joel’s fight with cancer that began over four year ago. Nothing in my spirit has ever cautioned me to temper my belief in a glorious miracle for Joel. Everything I have ever felt from God has been an urging to go for it, to hold nothing back, to boldy believe every crazy promise I have ever read in the bible and to expect to see the glory of God. That is not to say there has not been a tether, something holding me back, and that has been God’s timing. Again and again I have felt certain that we were waiting on God’s perfect timing. Years ago, I asked God to do whatever was most glorious, and many times I have seen that waiting for the most glorious moment has meant a lot of ups and down and a much longer season of endurance than I thought I was capable of. Now, I know that tether is being released from us. We have grown strong as we waited. We have learned just how faithful God is to us, and now I can say with confidence that God’s time to move is approaching soon. Whether we have a few days to wait or a few months, I don’t know, but I know that it is this season or no season at all. Joel will not be healed by medicine. Joel will not continue to live in pain. Joel will either be healed by God or he will die, but we will try to never make peace with cancer, and to contend for Joel’s life. I am filled with expectation and excitement as we wait to see what God will do now. I’ve lost Joel as he was already. There have been many sad and terrible moments of watching Joel slip away, of watching Joel be less Joel, the loss has happened, and when I think of all we have lost I could cry for hours, but when I think of what lies ahead of us, I have so much tremendous hope.
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We will now have the opportunity to trust God as fully as we have ever been able to, and in just a little while, I could see God move in a way that will astound me. The years of endless waiting are drawing to a close, and hope is filling up the places that have lain dormant as we tried treatment after treatment. We have known for years now exactly what death could look like, now I want to learn what a miracle will look like instead.

Joel’s MRI showed at least one new tumor in a new location in Joel’s brain, the most significant change is that tumor cells have begun to line Joel’s entire brain and spine. His past MRI had shown an insignificant amount of this kind of tumor lining build up, but now it is everywhere. The assumption is that all of Joel’s nerve endings are coated in tumor cells which can cause everything to work less efficiently including his lungs. They said the MRI also showed some light hydrocephalus, nothing that requires a shunt yet, but it is new compared to the last scan. This scan also shows that Joel had a minor brain bleed at some point, it appears to be something that caused no symptoms and has resolved, but it could mean that Joel could have future brain bleeds that could be more serious. (Possibly from a tumor bleeding but that is unknown.) The tumors in and around the brain stem appear to be stable with no new growth. A place in Joel’s spine that had been some light coating of tumor cells now looks more like a mass.
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The new tumor growth means that Joel will no longer be on the trial, and we will return home. At this point the hospital does not recommend that we drive home as planned but they want us to fly home instead so that it is a quick trip for Joel and so that we are not separated from him for any significant length of time. (We had talked about Ryan and Joel flying home while the kids and I drove home in the van with help from friends or family, but the doctor really thought we shouldn’t separate our family right now in case anything shifted quickly with Joel.) The hospital is going to provide flights home for us, donated through Southwest Airlines, so we won’t have to worry at all about the expense of flying our family home on short notice.
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However, at this point Joel is still needing oxygen to keep his saturation levels high enough, so they have admitted him to the hospital. It is possible that the respiratory difficulties were just exacerbated by the anesthesia today, since his oxygen saturation levels yesterday were fine. If Joel’s breathing improves over night we will all fly home together tomorrow. If Joel continues to need oxygen he will have to be flown by medical transport to Children’s hospital in Colorado and just the other boys and I will fly home on Southwest Airlines.
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We will have to make a plan to have someone drive our van home, but everything else seems to be falling into place. Joel seem very tired, and he is very quiet and still, but it is hard to know how much this might be due to the anesthesia. Nothing on the scan today implied that his rate of decline should be speeding up suddenly, but a new brain bleed or a shift in the hydrocephalus would speed up Joel’s decline unexpectedly.
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It is time for a big miracle. There is no other medical option to pursue at this time. Caleb, Isaac and Elijah are doing well, there have been questions and answers and tears but they are doing very well. They are playing mine craft and looking forward to going to the “All Star Room” at the hospital this afternoon where they get to play video games. To be fair, they know the cancer has spread and that we are going home and that Joel may continue to need help breathing, they have no idea how close he is to dying, or how desperately we need to see the glory of God intervene in a miraculous way for Joel.

Joel is awake from his MRI now, but he is not breathing well without oxygen. As long as he is wearing an oxygen mask his saturation levels stay up but as soon as it comes off he begins to gradually lose oxygen saturation, dipping into the high sixties, probably lower except that we assist him with oxygen.
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We heard the anesthesiologist tell the nurse that she had heard the plan was to admit Joel. They also gave him a catheter because his bladder was full. He had a full diaper this morning with no liquids since midnight, so they are concerned that he has some sort of blockage.
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Please pray for Joel and for us as it is pretty nerve-wracking. Still waiting for MRI results but it is not looking promising, it feels like we’re just waiting to find out exactly how bad things are specifically.

In a few minutes I will wake up Caleb, Isaac and Elijah and we will get ready to go to the hospital for Joel’s MRI. I won’t have to wake up Ryan and Joel because they are already awake, the three of us didn’t sleep much last night. I know I was awake at 2, 2:30, 3, and from about 5am on and probably didn’t sleep much of the rest of the night, but those are just the times I checked the time. Joel’s cough is so weak now and after his breathing issues yesterday it feels like he can quit breathing at any time. Every time I woke up I would rest my hand on Joel’s chest just to feel him breathing. He did fine all night. We’ve even had him get upset and cry a few times and not stop breathing, so that should be reassuring, but it wasn’t enough to help me sleep.
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I wish Caleb and Isaac could skip this day. They have never been so keenly aware of an MRI and its consequences. We’ve always tried to be very careful about how much information we give them and how we give it, but since we all share one big room, and they saw Joel quit breathing, and they came to the emergency room with us, they are just much more aware of what is going on right now. There have been lots of questions in the past day or two, and lots of very careful answers, but last night as we all tried to fall asleep Caleb cried and wailed, so worried about what the MRI would show. Isaac added his more reserved tears and no matter how we tried to reassure them, nothing we said brought comfort. I held Caleb. Ryan held Isaac. I asked Caleb to tell me if he thought of anything that might help him, and after about five minutes of cuddling and crying he said, “I think maybe some music, or the bible app that reads the bible might help.” So, Ryan put worship music on, and Caleb began to sing quietly and within one song he told me, “the music is helping a lot mom, you can go back to your bed.” As the songs continued, Caleb sang out so loudly, and Isaac sang quietly until he too said he was ready to go back to his bed.
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They have slept well, and I hate to wake them up, knowing that all the questions that no one can answer well will start running through their heads again, all the worry, all the concern I wish they didn’t have to share, but then I remember that God has a unique relationship with them. Caleb remembers the dream he had of Joel healed and learning new things, and last week as we were going to bed It was late at night and he was about to fall asleep and said “Mom, I’m thinking about things again…” which is the standard cue he gives that he is feeling emotional about Joel, and I’m bracing myself for a hard conversation, the kind Ryan is better at handling as he is more sensitive and careful like Caleb usually needs, and Caleb said, “I started thinking about Joel because I was praying for him, and I prayed that he would be able to make Zoe laugh, because you know he hasn’t been able to enjoy things as much and I think he would like that, and I was praying that one day I would be able to tell people that when I was younger God healed my brother from cancer.” It made me happy to hear the way he prays and how he thinks, and so I told him how much his dad and I were looking forward to being able to tell people one day about what God had done for Joel, too. He prays for unique things I’ve never thought to pray for, because the holy spirit is in him, prompting him how to pray. That same holy spirit is his comforter, and will comfort him uniquely in ways I can not.
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And so, knowing I should have woken everyone up 16 minutes ago, I cannot put off this day and all it holds any longer, but I can trust God that “This is the day which the Lord has made, we will rejoice and be glad in it.” Psalm 118:24, because somehow, no matter how hard the news today is, we will have moments of joy, and that is pretty miraculous all on its own.

The trip to the emergency room was actually pretty reassuring. His oxygen saturation was great. His lungs sounded gunky and congested so they did a chest x-ray which came back fine. They basically said that yesterday sounds like a classic breath holding spell and that today sounds like the same thing but exacerbated by his cold and the fact that his weak muscle tone makes it harder for him to clear his secretions.
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The ER doctor seemed very relaxed about everything, our oncologist made sure everyone thought Joel was safe to go back to the family house, and basically feels like the MRI tomorrow will tell us a lot. It is easy to tell that he expects the results tomorrow to show tumor growth.
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In the meantime the breathing issues we have seen may have nothing to do with Joel’s tumors at all.

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.