Archive for the ‘ Mommy Update ’ Category

I keep meaning to post that when I went to get Joel out of his crib on Thursday morning he was standing up in his crib. When I changed his diaper I stretched out his leg, fully extending it, and he did not wince or show any other sign that he was having any pain at all! Praise God! One more false alarm. Ryan and I get a lot of bad new about Joel in various forms. The pain we saw seemed like very bad news, but once again, it did not amount to anything. One day I will have to learn to hear the bad news and smile to myself and think “We’ll just see about that, because God gets the final word.”
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We marvel at all the ups and downs we have had. How many times can we see pretty amazing miracles and then be given terrible news only to be rescued from it again? We wonder what it seems like to people who are following Joel’s story. We have been hoping that our roller coaster ride of faith and disappointment and new faith may be turning some hearts toward God.
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This scripture was a key verse at church this morning, and it fits our lives so well right now that we just have to share it even though I’m sure it is familiar to most of you.
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2 Corinthians 4: 7-12
But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you.

I am really struggling tonight. I keep expecting us to find our feet, for us to rise up, strong in faith, and continue our lives as if nothing has changed. (I know this is just day two, and logically I really understand that it is reasonable for us to still be grieving from the news we received, but I am annoyed at my inability to shake this.) Honestly everything feels worse late at night when I get tired, so I should be going to bed earlier and not writing while I am sad.
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Still, the sadness is party of this journey too. Ryan and I both agree that we’re not flailing. We know we’re not panicked, we’re not even really scared. We’re just very, very sad.
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I can not imagine restarting chemotherapy again. I don’t think I’ll ever be able to put into words how imprisoning it feels to have a child on chemotherapy treatment, and how free our life felt this last year. I keep trying to remind myself that the last time we were told Joel was about to die was right before we had this amazing year.
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Joel seems so healthy. He is growing and happy and I can’t imagine watching him disappear into a weak, sick, tired child again.
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It seems like a very small thing, but as I sat down to write this I felt like the key to walking this out is to get a bigger picture for just how much God loves us. I feel like what we are facing right now is so overwhelming especially because we’re getting close to two years into fighting cancer and we are just really tired. At the same time I believe that when my picture of how much God loves me becomes bigger than how hard this road is, I will be fine.
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I’m also relearning what grief this big feels like, relearning that when I feel myself get tired and sad it is time to worship or read the bible or pray. I’m remembering how to be diligent to enter God’s rest. (Hebrews 4:11) It is a mercy to be so sensitive to the state of my spirit. I definitely know when I am feeling empty now, but I am hoping that sometime soon I can remember what it feels like to feel full.

I love to share Joel’s new accomplishments with everyone. Now, Joel can drink from a regular cup without spilling. For the last week at meals we have been giving him non-sippy-cups, and he has learned not to just dump them on himself. He is really good at only tipping it enough to drink but not enough to spill. We’re very proud of him.
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Joel will have a hearing test on Tuesday. We are hoping to get more solid results this time, by keeping Joel from pulling out the ear phones they use. We are going to distract him with a pediasure bottle and this time they will have two audiologists there to try to get a more sure result. The last test showed that Joel had mild to moderate hearing loss, but they weren’t sure how accurate it was. Please pray for an accurate reading. We have wondered if any of Joel’s speech delay could be doing to non-corrected hearing loss. You could also just pray for any hearing damage to be healed in the name of Jesus.
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Last week I posted about my kidney stones, and after talking with the doctor I have learned that they are really puzzled about how such large stone have passed as far as they have, and they can not believe I’m not in pain. They also do not believe the x-ray which shows that the very large kidney stone which has been sitting in my kidney for four years is no longer there. They want a CT scan because none of these things make sense to them and they think maybe the x-ray had it wrong and that a CT scan will offer a better explanation. Ryan and I think the CT scan will reveal that we have received a small miracle with the kidney stones. We are praising God that I am pain free!

We have only been home from vacation for a week and a half. It feels like it has been months. We so relished being able to hit the road for a month with the family and not have to worry about anything tying us to home. There were no appointments, nothing that could cause a rush to the emergency room. We were just living out of suitcases, driving around the pacific northwest, not worried about much of anything really.
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How is it only a week and a half later and our reality has been turned on its head? I try not to ask myself why our last three vacations were quickly followed by tragic illness for Joel. It is easy to feel a little robbed of a carefree life that other people take for granted, but perhaps I’m looking at it all wrong. Maybe God encouraged us to take our trips and enjoy them knowing that rough seasons would come all too quickly. I am grateful for the special family together time we have had, especially sleeping all together in one hotel room. It felt like we were making up for all the nights one or the other of us was gone at the hospital and our older boys would comment on how they liked it when we were all together as a family. I want to jump to the conclusion that Joel’s new tumor will mean more nights that our family is separated, but my spirit cautions me not to assume this will last that long.
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I have every reason to believe that God will quickly vanquish this tumor, and that Joel will be healed so fast that I will look back and think every tear I cried was silly. I also know intimately every part of what life for our family will look like if this battle lasts longer than I’d like, and knowing what we’re up against seems to justify all the tears I’ve cried.
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These past few days I have been easily overwhelmed by simple things. I don’t feel worried about Joel, but other aspects of my life that should be totally manageable are not, so I know that there is a lot of stress that accompanies all the unknowns in our life right now. Ryan and I are quick to check how each other are doing and just trying to be extra sensitive and patient. Basically, right now, life is very hard, and I feel very fragile, but we are doing pretty well all things considered.
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Despite the stress and emotion, I feel anchored. As much as I don’t know how or when God will move, I know that He will, and it keeps me from worrying. There is a weightiness I feel, even when I don’t remember quite why, and yet it does not even come close to despair.
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We know that this past year feels worth it because of the way we love each other now, the new things we know about God’s love for us and His faithfulness, and the incredible miracles we have witnessed. We have to assume that at this time next year, we will still believe that all of this has been worth it. We have wondered why the tumor is back now, and why God’s healing seems to have happened so subtly and incrementally. We are not sure. We have proposed that maybe there are people reading about Joel who don’t know God yet, and who are watching this all take place, who are learning how much God loves us through Joel’s story as it unfolds. If this is the case, if anyone could come to realize that God loves them and wants a relationship with them because our family goes through the trial of another tumor and waiting one more time for God to deliver Joel, then we would say we are willing.
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We are willing to go through this even longer, if in the end Joel is ok, and people can see the character of God more plainly. Then I think about that, and how I am willing to sacrifice some comfort, as long as my son is ok. God was willing to sacrifice His son’s life entirely so that we could be united with Him. I am humbled at how much God sacrificed, and that He did not put caveats on his grace. He said that we were worth His son’s life, even when we were broken, even when we delighted in our own sin. I do not understand the way God sacrificed for us, and the closer I get to that kind of sacrifice willing or unwilling, the less I understand it. I am so amazed at how much God loves us, and I know that His love for us is what keeps me anchored through these rough seas. When I am overwhelmed, I plunge into the depths of God’s love and I have not found its limit yet.

Sometimes, Ryan and I just look at each other, bewildered and amazed that God has given us such an amazing gift. Joel is alive. We love him more than we can even really communicate, even to each other, but in our struggles to verbalize the strength of our love for Joel we can tell that we are both feeling the same thing.
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Yesterday we had a moment like that, and I told Ryan that it made me so aware of how different our lives could be, had we not chosen to pursue God on Joel’s behalf. Ryan disagreed and said it made him feel the opposite because he was so aware that he didn’t do anything to justify the blessing we’ve received.
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This is a theological line we have walked a tight rope through all year. Does God move because we act, or in His omnipotence are our actions inconsequential? Both are true. Our God is so big and so good that nothing we do could possibly add to His goodness or power, and yet, He chose to partner with us. I think of our children and how we often ask them to help us with things. When I ask my four-year-old to help me cook dinner, I am not asking him because I can’t cook dinner, or because his help could possibly do anything to improve dinner, in fact chances are his help will make dinner much messier than dinner would have been had I just acted alone. However, I ask my son to help me make dinner, because I love him and I want him to partner with me in the task, so that he can learn and grow and just so he can connect with me. If I ask my son to help me make dinner, I wait for him to help before I move forward, and I am not expecting any particular ability or strength from him. The outcome of dinner will not be in any way dependent on my son’s ability, just on his willingness to come help. God asks us to partner with him, just because He is our Father and He loves us. It matters that we agree to partner with God. It matters that we choose to act when God asks us to, not because our actions are so grand, but because our Father is so good.

Just taking a moment to feel thankful for sweet Joel. He is such a delight. Sure he throws more fits now, like you would expect of a two-year-old, especially one that can’t communicate his desires, but his nature is so sweet. Joel loves to cuddle, and he is happy so much of the time. Joel loves to laugh. He laughs so often, and when we all laugh at something and then he waits a short moment and joins in, it is just amazing because you can tell he was just looking for an opportunity to laugh with us. Joel is alive. God has been so good to us.

Sun. 9:26pm – 4 days before the next MRI, a narrative.

March 20, 2011 | Comments Off on Sun. 9:26pm – 4 days before the next MRI, a narrative. | Mommy Theology, Mommy Update

I walked back into the church from the parking lot, where I had been chatting with a friend, and there was Ryan sitting in the entryway with our three boys and a few of their friends. The potluck was well under way, each boy had a plate of food they were neglecting while shouting “gummy bear” at Ryan. Every time they shouted “gummy bear” Ryan obliged them with a quick, or silly, or gruff “not now Steve.” The boys all laughed their approval, and began even more aggressively with their part of the game. Within a minute of sitting next to Ryan I was tired of the game, but he kept it going without a fraction of my annoyance, even though it was obvious the “fun” had been in progress for quite some time. After a few more minutes I was quick to point out that just as soon as they finished their food they could all go run and play, spoil sport that I am!
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This whole time, Joel was leaning against Ryan with a third of a banana in his hand. Joel took consistent bites, swallowing each one, and I could not help but ask if he had really eaten all of that banana himself or if Ryan had given part of it to someone else. He told me it was all Joel, and I was amazed, overjoyed even. Joel had been swallowing food successfully for several weeks now, but usually didn’t take enough bites to make me think he could get by without his bottles each day. I began to tell Ryan how excited I was about his eating, and how just yesterday at goodwill I thought about buying a small food scale so I could weigh his food before and after I fed him to try to get an idea of how much he was eating. Something in my spirit stopped me from buying the scale as I had the thought, “That would be a lot of work, and Joel will begin eating much greater quantities of food so soon that it will not be worth it.” This thought was counter to my standing opinion, but I’ve learned to listen to that quiet voice of wisdom. I was telling Ryan this story and saying how it seemed like such a huge confirmation that I was watching Joel eat so well the very next day. I was not holding back any of my excitement, but began to sense that for Ryan, my excitement was creating some hesitancy in him. Just then, a friend walked by and asked when Joel’s next doctor’s appointment would be. I told him that it was Joel’s MRI and lumbar puncture on Thursday and explained that we were excited for the MRI and expected it to be good, but that of course something in the back of our heads worries just a little bit about the result. It is partially that unavoidable worry that makes us glad to be getting this MRI out of the way. It will just be good to know either way, but we are mostly excited because our expectations are for more good news.
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Our friend walked away and I looked back at Ryan to see that all too familiar mixture of joy and fear on his face. I could tell he was so proud of the way Joel was eating, and so nervous that somehow all the pride he had in his son could very quickly be stripped away and replaced with the kind of news that has shaken our small world time and again. At this point Joel had moved on from his banana to some nachos that he was delighted to dip over and over again into the little pocket of cheese without much concern for how much cheese made it into his mouth. Just then another person walked by, looked at Joel leaning against Ryan with his nachos, and smiled the smile that so many of us at our church share, the smile that without words says, “Isn’t this just amazing, this same boy we prayed for week in and week out when he was scrawny and sick sitting here with his dad eating nachos!” He noticed me noticing him, taking in everything his smile silently conveyed and storing it away in my heart, and he looked up at us and said, “Wouldn’t that be an amazing picture?” He walked out the door, and I looked back at Ryan my heart overflowing with joy and pride.
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Ryan was struggling, and just by looking at him I knew his feelings. I have felt them too often myself. “Another MRI, another chance to confirm the miracle God has done, our only way to see what is going on inside Joel’s brain, a new opportunity to be absolutely sure that the cancer has been routed out forever. I know what God has done already, and so why am I still a little worried? I am looking forward to this not just to confirm what we believe to be true, but also so I can just be done with never feeling completely sure. What if my worry, my concern for my sweet son is enough to rob me of the amazing thing God has done for us. What if my doubt is so big and so wrong that the miracle we have seen is completely undone before our eyes?”
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How do we, as parents answer these questions that plague us, along with countless others, “What did we do right? Did we do anything right at all? Why has God been so faithful to us and to Joel? Why do some people who believe God’s promises just as strongly as we do sometimes not see the same outcomes in their lives, and if we don’t know why, what will we ever say to them?” How do we ever silence the accusing questions that rob our peace and steal our joy?
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Ryan, closed his eyes and began to sing. “Give me faith to trust what You say, that You’re good and your love is great. I’m broken inside I give you my life. I may be weak, but Your Spirit’s strong in me. My flesh may fail, but My God You never will.”
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As I watched Ryan’s response to the unspoken questions etched on his face, my pride in him, already so full, grew until my heart almost burst. This is how we silence the questions. We remember that we were never sure of the outcome for Joel, but we were never unsure of who God was, and that all of His promises were true whether we saw the fulfillment of His promises in each of our circumstance or not. We remember that our peace has always come from shifting our focus from Joel and the cancer he was battling, to our God, Joel’s God, who conquered death and the grave, and put an end to the power of sin and disease. We turn our hearts back to God again, and when the questions, doubt, worry and concern seem so big, we look at God instead, and remember that in His presence all of our worry doesn’t seem very powerful at all, certainly not powerful enough to trump God’s desire for our lives, or His eternal promises of abundant life.
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Post Script Cultural References:
“Gummy Bear.” “Not Now Steve” are lines from the animated movie, “Cloudy with a Chance of Meatballs.”
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Here is a video of the worship song Ryan was singing to himself.
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It amazes me that it has only been a month since Joel’s last MRI. God has been really stretching Ryan and I this month. We love to just sit and talk about all of the incredible ways God has been faithful to us this last year, and when we do that we always feel peace and joy!
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There have been a lot of times though, when we worry that maybe we have declared Joel’s healing too soon, or we just struggle to accept that God has really answered all of our prayers. We did not expect it to be so hard to receive the things we were asking God to give us for so long. We are amazed that every day is still such a journey of faith because there was nothing about the last MRI that medically proved we have overcome, but something just dramatically shifted for us spiritually that day when we realized that God has again and again overcome bad news for us and made a way where it seemed like there was no way!
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God has been so faithful that is hard for us to fully receive it because we feel so unqualified to receive such a great gift! We melt every time we look at Joel, because we realize that we have been blessed more than we deserve! Last week in a bible study on Revelation I read this at the end of Revelation Chapter 2 verse 10 “Be faithful, even to the point of death, and I will give you life as your victor’s crown.” I see Joel’s life as our victor’s crown. I am always so happy to share photos and videos of Joel as he continues to grow because I believe that Joel’s life is your victor’s crown too. All of you, who have prayed for Joel, have been faithful for Joel, who could not be faithful for himself. You were faithful to the point of death. You did not give up praying for Joel even when they told us he would die, and now he lives! Praise God! It hits me new all the time that they said my son would be dead or dying now, and he is living!
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Another aspect of this that we have struggled with is “Why Joel?” We know God’s promises are true, but we also know that we live in a fallen world where many people that know and fervently believe God’s promises do not see them realized in their circumstances in the ways that they expect. There is something a little like survivor’s guilt that comes upon us sometimes because we know how imperfect we are, and we know the heartbreak of disease and fear of death for anyone still struggling against it through faith. We know that the things we have gained have been through the community of faith that God has surrounded us with from the very first moments of this ordeal! Still, I have struggled with how to answer the “Why Joel” question, even if Ryan and I are the only ones who are asking it. Tonight at a prayer night, an amazing Woman of God shared this section of scripture with our group, and for me it answered the “Why Joel” question.
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Titus 3: 5-6 “But when the kindness and love of God our Saviour appeared, He saved us, not because of righteous things we had done, but because of His mercy. He saved us through the washing of rebirth and renewal by the Holy Spirit, whom He poured out on us generously through Jesus Christ our Savior, so that, having been justified by His grace, we might become heirs having the hope of eternal life.”
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God’s amazing gift of life for Joel continues to raise up even more questions in my spirit than Joel’s battle with cancer did, but God has been faithful to answer my questions, to stretch out my expectations of how great God is, and to expand within me my trust that if through circumstances I can not predict, the battle for Joel’s life is not finished yet, God will be even bigger in the future than He has already been for us. This is a truly beautiful season for our family, made even more beautiful, I think, by the small complexities of the questions only God can answer.
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(And even though I wanted to end on that statement, as I re-read what I wrote, something in my spirit said, “God will be bigger in the future than He has already been for us, without any qualifications, not only if Joel has something more to struggle through, even if all we see from here on out is life and life more abundantly, God will just keep getting bigger to us forever!”)

(When we began Joel’s website last year, Joel was already at Children’s Hospital in Denver. I never wrote in detail about the weeks that led up to his helicopter flight to Children’s Hospital. I remember those weeks pretty clearly still, and wanted to write about them now, a year later while the details are still clear to me. It was a very tough two weeks that ushered us into an unimaginably difficult year.)
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The first time Joel vomited it was unusual. He hadn’t seemed sick, but then he threw up forcefully and from the looks of it, it must have been everything in his stomach. I had never seen a one-year-old throw up like that. I was grateful he was in the kitchen at my friend’s house, since this would have been a giant mess on carpet, but I was definitely wishing I had not picked him up just in time to be covered myself. The youth group leaders meeting in the other room paused and looked over at us, and I quickly explained that my sons and I would be leaving early, although I’m sure the visual was explanation enough.
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Joel continued to throw up after he ate for three days. He was happy enough to eat but was vomiting a few times each day. I called the pediatrician on Friday, because I wanted to check on Joel before the weekend, and the nurse told me that vomiting with stomach bugs was normal for 3-5 days and to call back if it continued two more days. At first it seemed a little better, he threw up just once Saturday night, so perhaps it was running its course, then he threw up again Sunday night. Monday the vomiting was worse again, so on Tuesday, Joel’s first birthday, I called early in the morning, and took Joel into the doctor’s office. At this point, we had removed formula from his diet all together, wondering if he had developed an intolerance, and I was trying to give him less food at a time. We were seen by a physician’s assistant who told us that until we saw some blood work it would be hard to tell what was happening, so she sent us to have Joel’s blood drawn at the hospital, mostly worried about dehydration from the extended vomiting. Caleb, Isaac and I went to the hospital, and the boys were pretty patient as we waited in the waiting room and then were escorted back to the small exam table. The phlebotomist on duty called in reinforcements, one nurse to entertain Caleb and Isaac and an IV team specialist to help with Joel. The “entertainment nurse” gave Caleb and Isaac graham crackers, juice boxes and stickers. The phlebotomist and I did our best to hold Joel still as the specialist did her best to draw Joel’s blood. She was trying very hard, but after close to twenty minutes nothing had worked. The specialist felt terrible, and the phlebotomist and I both began to feel a little desperate, and I wondered what would be the next step if they just couldn’t get his blood drawn this way. “Ok, the phlebotomist said, exhaling deeply as if to reset herself, “Let’s give this one more try.” I prayed. If memory serves she also said something about praying, but since I don’t remember clearly I won’t put words in her mouth. I held Joel down one more time, wishing Ryan had been with me because he was much better at this sort of thing. The specialist was determined. It worked. They were finally able to get Joel’s blood drawn, and we were all quite relieved. Caleb and Isaac had been so entertained by the other nurse and all of their goodies that they hardly noticed how long we had been there.
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We drove home, and I was surprised later when I received a voicemail from our PA asking us if we had indeed gone to get the labs done, because she had ordered them stat and nothing had come in. I looked at the time, and seeing that it was after 5:00, I decided I would wait until the next morning to look into everything, afterall Joel had a very big birthday party that night, and it seemed like if I kept feeding Joel very small amounts of food, I could keep him from vomiting.
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As we prepared for Joel’s party both my mom and my friend were a little frustrated with me for not doing more pushing about the lab results. Everyone around us could tell that something was pretty wrong with Joel and I remember thinking, “I want Joel to have this first birthday party, and if something is really wrong, I would actually prefer it wait until the morning so we can enjoy tonight.” The party was fun, but probably not for Joel. Everyone could tell he wasn’t feeling well, as he sat still in our arms the whole time, with his head tilted to the side. We had first noticed this head tilt in January and I had mentioned it to the PA who said it was unrelated, still it seemed to get worse when he was tired like this. I was so relieved when we finished the party without Joel vomiting. We got some cute pictures, even if Joel hadn’t seemed particularly interested in the cake or the presents, and was even less interested in his adorable sock monkey costume and two five-foot-tall stuffed sock monkey dolls. That night, we announced to our friends and family that I was pregnant with our fourth child. We had only discovered this a couple days before, but we thought it would be a nice occasion to share the news. When we got home that night from the party we fed Joel and gave him some water and he perked right up and was giggling and kicking his legs, acting adorable and happy, like I wish he had been for his party. We were optimistic that the worst was past us.
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The next morning I called first thing about the lab results and the PA said she didn’t see them but would look into it and call us back. I waited, for two hours, and called again. Our PA was busy but they left a message for her to call us. I waited, and called back a third time, still unable to get a hold of anyone who could tell us anything, I hung up the phone, began to cry, and then called Ryan. Through sobs I told how unreasonable I thought it was that no one could be bothered to find the lab results and tell me what was going on; I knew it was a big practice but there couldn’t be that many children whose parents were awaiting test results, and after all it had been ordered stat the day before. Ryan called them and was more than a little pushy. I was both embarrassed and relieved, and within minutes I was on the phone with our PA.
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“Well first, how is Joel doing today?” she asked. “Actually, he hasn’t thrown up since yesterday morning. It seems like if I limit how much food I give him at a time he can keep things down.” “Oh, uhh, that’s great. I’m sorry it took me so long to call you today. Joel’s lab results were right in a gray area so I was trying to get opinions from several of the senior doctors here. We had actually decided to send you to the hospital for fluids and some more tests, but if he’s doing better and keeping food down, I think we could hold off, if you’re comfortable with that.” “Sure.” I said, relieved both that we would not have to try to draw more blood from Joel and that we could avoid a trip to the hospital. I was starting to think that it really was just a stomach bug and that we were getting to the end of it. “Ok, well if the vomiting starts again you’ll need to call and come in and we’ll be sure to get more labs done.”
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Joel did well the rest of that day and I was able to take him with me to youth group where I was teaching that night. Just as I finished up teaching the junior high youth group, I began to miscarry the pregnancy we had just announced the day before. This was of course very difficult, we had miscarried one other time, but something in me was not quite as upset as I had been the first time this had happened. Although things seemed a little better with Joel, the thought occurred to me that maybe what was making Joel vomit was much more serious than I thought, and maybe the pregnancy would have been too overwhelming if this really was serious. It was a fleeting thought, and Ryan and I were still very sad, and very much wishing we had not just made a big announcement. We had only known we were pregnant for a few days but it was still devastating. The next day, Thursday, Joel continued to keep his food down, because we were careful to never give him very much at a time.
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By Friday Joel was eating table foods at lunch and seemed to be doing really well. My mom babysat the children for us that night, and when we came home we discovered that Joel had begun vomiting again. My mom also noticed that Joel was exclusively using his left hand to do things, reaching awkwardly across his body to reach things that would have been much easier to reach with his right hand.
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Saturday morning my mom went with me to a walk-in appointment at our pediatrician’s office. She had been very worried about Joel, to the point that she was often losing sleep at night, and I knew that she would be good at asking very direct questions. We explained everything to this pediatrician including the head tilt, which he told us was unrelated. He calmly and only slightly dismissively answered my mom’s questions and mine, and told us that nothing on the previous lab report actually justified getting more labs done. He was reasonably sure that this was just reflux, and prescribed medicine, telling us it would take up to 3 days to work, and to call back on Tuesday or Wednesday if things weren’t significantly better by then. The reflux diagnosis didn’t seem quite right, but I think my mom and I were both really glad to have something to try. At this point, any answer was a relief because it had been eleven days since Joel had first thrown up.
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We gave Joel the reflux medicine but he seemed to only get worse until eventually he was vomiting up everything we gave him and had no energy to play. He refused to be set on the ground so I spent my days sitting in a chair holding him, the house became a chaotic mess, as I was not able to get up and clean things during the day (something I had worked hard to create a routine of because I have never been very good at housework to begin with.) The worse Joel seemed, the more concerned I became. I remember being so upset and feeling like I couldn’t do anything but keep giving him his medicine and waiting out the three days. By Monday, even though it had only been two days on the reflux medicine I called the nurses at our pediatrician’s office, and while I waited for a return call, I wrote this in an email to my friends,
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“Joel is throwing up several times a day still.  I feel like he’s starving, but for the last day or day and a half he pushes away any liquids I offer him and almost all solids I give him.  Basically right now as long as Joel doesn’t see any food he lays limp on my chest, but if he sees food, he gets very frantic and reaches out for it, then when I give it to him, he takes it and throws it as hard as he can then cries and cries while throwing his head against my chest over and over again, so needless to say, I’m about to lose it.  I feel like my kid is starving to death. When he does act hungry, Ryan has me only feed him really small amounts to try to keep him from throwing up, but then he cries and cries because he’s still hungry and I won’t give him more food, plus at this point, it is about once a day that he acts genuinely hungry, so to not feed him anywhere even close to enough food when he is so hungry is heartbreaking. They told me the medicine will take up to three days to really kick in, so I’m trying to wait it out, although I have already called and asked that a doctor call me back today, because half the time he spits out or throws up his medicine, so I question how effective it will be. Anyway, that’s the status update.  So far things are getting worse not better, and at this point I would prefer he just be on an iv so I know he’s getting food, because I feel like I’m being asked to be ok with slowly starving my baby.  I am constantly on the verge of tears right now, and I keep trying to remind myself that there could be so many much more terrible things to have my kids go through, but no matter how many times I remind myself of this it just feels like this week has been too much.”
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(I can never forget the feeling of desperation I had knowing that my baby was hungry and refused to eat because he was so tired of vomiting. I have never felt anything so difficult and the emotions attached to it stayed with me for many long months as we tried to give Joel everything he needed through his feeding tube after the surgery for four months and prayed desperately that he would regain the ability to swallow liquids so we could give him bottles and take out the NG tube. The feeling returned again when the chemotherapy made him nauseous in those early months, every time he would vomit it was like I was sitting in that chair again in my living room, devastated for my hungry child who was getting weaker and smaller by the day.)
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When the nurse did call back, she said I should wait another day or two for the reflux medicine to work. She asked me if Joel was still having wet diapers, and he was, so she reassured me that he could not be dehydrated if he was still urinating. She told me to call back on Wednesday if he still was still vomiting. It felt impossible to wait out two more days, but every time I talked to the doctors or nurses they told me to give it time. I waffled between thinking I was unreasonable for calling the doctors so often, and thinking the doctors were unreasonable for not taking this more seriously.
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I wrote my friends an email later that day, almost exuberant that Joel had kept down a half container of carrot baby food.
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As much as I tried to wait until Wednesday before calling again, Ryan and I were both very concerned by Tuesday night. Joel just seemed different, things seemed worse, and for the first time we felt nervous about putting him to bed in his room where we couldn’t see him all night. We decided to call again. This is my email to my friends late that night.
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“So, basically all day yesterday, Joel kept down food as long as we kept it to 1/2 container of baby food or less at a time, but he threw up when I gave him more than that.  He had less than three ounces of water all day long, but vomited up one ounce just before bed, when we had forced him to drink it.  So we called the after hours nurse (a triage nurse at children’s hospital) who seemed sort of shocked about the little amount of water he’d had the past two days, and who told us she would have our doctor call us, but to remember that no matter what the doctor told us, he is our kid, and we can take him to the hospital if we want to.  The doctor called and told me he would be fine until the morning and that they’d rather see him in the office than in the emergency room.  So basically, we were talked down from taking him to the hospital for an iv.  So, now I’m going in first thing in the morning, and they are going to repeat his labs most likely and see if he needs fluids etc.  I’m just a little freaked out about my baby who is withering away before my eyes, and the doctors keep telling me that he’s fine and just to wait a little while longer.  Right now he’s dry heaving upstairs because he woke up crying and we tried to get him to drink some water and that upset him and made him start vomiting but he has nothing left to vomit.  Sorry, to always write all these details to you guys but I just keep starting to feel like I’m losing it and I have to tell someone, and as I write that it occurs to me that I should probably just be praying, anytime I have that unspeakable urge to just get something out, it usually means I should be praying about it, so that’s what I’ll do now.
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Goodnight/Goodmorning,
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Amy”
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The next morning, Wednesday, I called and got Joel an appointment at our pediatrician’s office, at this point my mom and two of my good friends had basically insisted that I take Joel to the hospital. So, I was resolved that no matter what happened at the doctor’s appointment I would take Joel to the hospital after. I could not go through another night worrying at home like Ryan and I both had the night before. My plan was to go to the appointment, and basically tell them, “We want to take him to the hospital.” (It had now been 15 days since Joel had first vomited.) The earliest appointment time available was 12:50pm. It was agony waiting that long because Joel seemed even worse than he had been the night before. He kept falling asleep, and two different times just stared off into space completely blank in a way that was nerve wracking. I finally decided to get everything ready for a hospital stay and load the boys in the van and just go to the doctor’s appointment an hour early, that way if anything disturbing happened with Joel I would already be right there and they would have to help me.
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I was so glad when the pediatrician suggested we take Joel to the hospital. I was relieved not to have to insist, and was just happy to finally have someone seem to understand how serious this had seemed to us for so long.
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A year ago today we took Joel to our local hospital, we checked in and they began a series of tests after taking over an hour to try to put an iv in a baby that was still very difficult for even the experts to find veins on. Once everything was settled and Joel was on fluids Ryan and I were able to relax a little, the nervousness finally abating because we knew Joel was being taken care of. I pulled up my facebook page and at the very top of the screen was this status update from a comedian friend. “This morning during my devo’s, one theme kept jumping out, and it continues as I’ve gotten my day started: GOD HEALS. I felt compelled to post it, so I guess I’m supposed to encourage someone or pray for cats who need it. Give me a shout.”
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I read that, and felt certain it was for me, and felt in my spirit that whatever was happening with Joel it was probably much bigger than I had expected. I remembered the thought I had after miscarrying the pregnancy and again just felt that things happening now could be pretty urgent. I remember thinking “God could heal Joel right now, before we ever find out what the problem is, but I think I’d rather know exactly what it is Joel is being healed from.”
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I posted this comment under my friend’s status update. “You are a prophetic voice for this heartbroken mommy. I am in the hospital holding Joel, our one-year-old with an iv in his arm awaiting test results and trying to stir up my faith which feels a little trampled on right now.”
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Later that afternoon, the doctor ordered an upper G.I. study for Joel. Basically, Joel was to drink a bottle of barium (a chalk like substance that shows up well on x-rays) then they would do a series of x-rays as the barium made its what through his system so they could tell if there was anything anatomically preventing him from digesting his food properly. I could not imagine Joel being able to have this test done, since the night before even offering Joel water had set him into hysterics and induced vomiting. How would Joel drink several ounces of barium (much more disgusting than water) and then keep it down without vomiting it immediately? Ryan and I were very doubtful, but knew the test was important, so we sent out a prayer request in the form of a text message to everyone we could think of and we prayed.
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When they gave Joel the bottle of barium he drank over six ounces. (The most water he’d had at a time in a week had been around 3 ounces.) Joel was able to have the test done. In fact, Joel did not vomit until two hours later when I gave him some apple juice to drink. For us, based on the past fifteen days, this was miraculous. The test came back fine, and the doctor told us the next logical test was an MRI to make sure his vomiting was not neurological. The doctor did not told us what they were looking for specifically, but reassured us that it was mostly precautionary to rule out anything major. The MRI would take place the next morning, and we spent the rest of the day with Caleb and Isaac and various friends and family who stopped by. The mood was pretty relaxed and we even joked with our nurses and doctor quite a bit. Caleb and Isaac stayed the night with their grandma and Ryan and I slept at the hospital with Joel, one-year-ago today.

Usually, I’m pretty strong and feel pretty confident about Joel. Usually, I have peace that passes all of my understanding, but every few months I have a crying day. I had been feeling a little sad and a little tired for the past few days, and so sure enough as soon as the first worship song began at church today I began to cry.
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Actually, my tears have begun a little before that when I was marveling at all of the new hair on Joel’s head. (Yes, he has a small layer of peach fuzz all over his head right now.. I will try to take a picture of it sometime soon in good lighting so you can see it.) All week I have been looking at Joel’s new hair, but today it was just too much for me to know that Joel was growing new hair, something I’ve wanted to see for so long, and also to know that Joel’s tumor is still growing. I want Joel’s hair to be an indication that he is living, and I guess in some ways it is, but underneath that beautiful hair is a tumor that is still actively killing him. These two truths in conjunction were too much for me, and my tears began and did not stop for almost two hours.
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I cried through all of worship, and most of the sermon. I began crying because I was tired, I was sad, and I was not sure if the things I believed could possibly keep carrying me any longer.
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On Monday, we were hoping to see that the work God had done in taking away all of the cancer cells in Joel’s spine was representative of the greater work of removing all cancer cells everywhere in Joel’s body. When we discovered that God’s work of healing Joel has not been completed yet it was tough, but God was faithful. When we learned we would have a CT scan Friday, I marveled at how much better the timing would be to discover God healed on Friday, just four days after the last scan and with a whole new team of doctors involved. It was either Wednesday or Thursday that I thought, we didn’t see God’s healing completed on Monday, but already the timing would be even more amazing for it to be Friday, and if it is not Friday I can only assume that whenever we see God move it will be the best possible timing and even more glorious than Friday.
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Even though Friday did not show anything miraculous it was a good day and we were encouraged.
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Somewhere between Friday and today I began to think, “How long will I keep assuming that this is just an issue of God’s timing?” “Is this just what I keep telling myself to get over disappointment?” “Afterall, how could anything be more amazing than having a clear CT scan on Friday?” None of these thoughts were quite this well developed, they just bounced around in my brain, unformed and certainly unspoken, but slowly stealing my joy and my peace nonetheless.
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Today the sermon at my church was about God’s perfect timing. It began with the verse “When the fullness of time was come, God sent forth His son.” Galatians 4:4 The sermon talked a lot about how God has a perfect time, He is not early and He is not late. The sermon also referenced Acts 3:1-10 the story of the lame man who was healed by Peter and John at the gate called beautiful. Our pastor talked about how the lame man begged at that gate every single day, and perhaps the apostles had passed by him before that day. He explained that the Greek word hôraios translated there as beautiful actually means “belonging to the right hour or season.” That story is a story not just about healing, but about timing.
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By the end of the sermon I was no longer crying because I was so tired and sad, I was crying because God is so faithful and His timing, even in giving my pastor this sermon, was so perfect. I needed to know that what I had been speaking this week about timing was not just some crutch I used to prop myself up, but was God’s truth, spoken by me from my spirit to give me comfort and help me understand our situation.
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Is it hard for me to imagine a more perfect timing than this past Friday for the full revelation of God’s healing? Yes, it really is, but God has been so faithful and I know that He does not tarry to cause us grief, but He tarries to bring glory to this situation, and I would rather God receive the full glory for what He is doing, than to be spared weeks or months more of this challenge. It is easy to say this because God has carried us through this, He has taken on the burden of every moment. No matter how long this waiting continues, God will continue to carry the burden.
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I hope that I will continue to expect each new day to be the day where Joel receives the fullness of healing that we are waiting for, and I hope that our faith grows stronger each time it feels temporarily disappointed, and that eventually all of us will see why God’s timing was so important.