Archive for the ‘ Mommy Update ’ Category

I think what I struggled to say in my last long post was, I know that my God will never disappoint me. I know that my own expectations will often disappoint me. How do you have faith without specific expectations? What expectations are ok? Is it ok to expect a certain outcome but not within a specific time frame? If you are believing God but not for anything specific, that does not seem like belief to me. Can we trust that “God will do what God will do?” of course, but our trust is completely unnecessary. With or without our trust “God will do what He will do.”

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I have decided this week that it is ok for me to have specific requests, to have things I am asking God for. As long as I know that God can answer me completely outside of my specifics. Knowing that often, when he answers me outside of my specifics, His answer is better than the one I was asking for, gives me a peace that helps me overcome the natural disappointment of having specific desires that were not met.

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You all know I wanted Joel healed yesterday through a method that caused a visible change, so I could see that it was done. Truthfully, I know that we are starting chemotherapy today, and that short of them finding no cancer cells in the spinal fluid today, chemotherapy will go on indefinitely until it is no longer helping. They told us there is no chance that this protocol will save Joel’s life. So if Joel lives it will only be because God steps in and saves Him miraculously. But Joel being healed yesterday would have meant that this could all stop before it started. Joel would never have another dose of chemotherapy, his counts would never drop again. I would never watch in horror as he had a seizure, or try to adjust to how he acted on very high doses of pain medications. Healing yesterday would have meant a very happy Thanksgiving, Christmas, New Years, and the most amazing 2nd birthday part I could imagine on January 12th. It is possible Joel was healed yesterday and that the results of this lumbar puncture today will surprise everyone including me. I have no reason to expect that, but every reason to hope for it.
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After today I do not have a plan, except continuing to believe that God will heal Joel, and that somehow I will know that it has happened so that I can take him off of the palliative treatment. It is also likely that eventually the palliative treatment fails Joel and it becomes very obvious that Joel is dying and that he is healed at some point in that process. Right now, the idea of Joel being healed on his deathbed seems emotionally impossible to me. I can say that it requires a kind of strength and persistence that I am not capable of on my own. Continuing day after day in faith as Joel gets physically worse feels like the spiritual equivalent of climbing Mount Everest when I have not trained and am not acclimated to the climate or elevation. I guess if this is God’s plan than I was wrong in saying that God would have to do a miracle of healing or a miracle of grace, because He would have to do both.

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I can feel how easy it would be to let go of faith, and “come to terms” with Joel’s physical circumstances. I know this won’t make sense to many of you, but if I could allow myself to just expect Joel’s death and make arrangements without any hope of healing for Joel it would be so simple. It would be emotional and tragic but not more than other humans have coped with. It is so tempting, as each new day passes, to decide that I only believed for healing because I am Joel’s mom and I am desperate. I could easily decide that healing was not what God ever wanted for Joel, but that I just wanted it so much that I insisted on faith to avoid the possibility of Joel’s death.
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However, just the urge within me to throw in the towel shows me that it is God who keeps leading me to believe for more. On my own, I would shut down because I, more than anyone I know, like to take the easy way (often trying in vain to create one where it doesn’t exist.) Part of me wants God to just give me comfort and tell me it is time to let go. Instead, God keeps showing me the people that He is stirring to pray for Joel. God is increasing people’s faith, asking them to expect more, to ask for even greater things for Joel. People, who like me, would rather just pray for grace for us as we lose a child, instead feel God pushing them to pray for healing. Once again, when I find myself out on a limb with God, wishing that I was just sitting on the ground weeping instead of dangling vulnerably above the earth, I look around and find I am surrounded. In every overwhelming moment when I find myself disappointed, emotional or just too tired to continue, I am surrounded by God’s faithful people. You surround me with your prayers, and with your acts of faith no matter how small or how reluctant. In fact, just like the widow’s mite, some of the smallest, most reluctant acts of faith from strangers bless me the most because they only serve to highlight how much it is God who is doing this work. Every time I hear a report, and it is often, of someone who doesn’t really want to believe for Joel’s healing, but finds God compelling them to, I am reminded that what has been happening here for ten months now has never been natural, it has always been supernatural, and I believe God’s answer ,if I have the strength and persistence to wait for it, and maybe even if I don’t, will be quite supernatural indeed.

(This is a post I wrote, not sure whether I would post it. Eventually I have so many things stirring around in my spirit that I have to write to settle myself and find God’s wisdom in the midst of chaos. Ryan said, there’s truth and there’s honesty, and it’s ok to just be honest sometimes and let people see where we are, even if we’re not totally sure it is the settled truth of God we are writing. So, excuses made, here we go.)
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This has been a week of trying not to expect too much. I know how that seems. About half of you will be thinking, “You’re not expecting enough, faith is measured by our expectations and what you’ve written so far has been markedly short on stated expectations.” The other half of you will be thinking, “Don’t strive, just rest in God, and let Him carry you to His conclusion, whatever it may be.” I’m afraid that both sentiments are true, and that once again, to be right in the middle of God’s presence I will have to wrestle with a paradox I don’t understand, “resting in my huge expectations.”

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I know that the word of God is clear for me, that God’s desire is to heal. I would say God’s desire is always to heal. I would also say that I have learned in very clear terms this year that Christians experience terrible things on a regular basis, they have children get sick, they have children die, they suffer pain both emotional and physical often more than I can even imagine, and far surpassing what I have experienced. I am sure God’s grace is sufficient for them, because God’s grace has never failed me.
How do I balance my strong belief rooted in scripture that God’s healing is not only available, but the authority for it has already been dispensed, with my knowledge that so much of the time here on Earth the defeated things (pain, sickness, sin, death) seem to win.

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I have stated very little about my specific expectations for Joel, not because they are too small, but because, at least to m.e they seem too big. I can barely acknowledge what stirs up in my heart and spirit for my son, because it would open up the possibility for disappointment. I have always said that I wanted to boldly step out in faith, because the worst possible scenario was my disappointment ,and God was bigger than any disappointment I might feel and could heal me of anything that was damaged in the process of believing Him recklessly for the completely unbelievable. Somehow this time, I can’t quite go there. I am trying very carefully, with a fear of God I rarely possess, to expect God to move, but not to mix in my own expectation, to not state ahead of time what I expect God to do. I can tell God is moving, but I don’t know how specifically. I know that when God moves it will be unmistakable. (Sometimes in the past, like with the nausea or the fevers while he was neutropenic, I felt like it was important to state in advance what God had asked me to pray for, so that way when it happened, everyone would know it was something we had gained with God through faith.) I do not think it is necessary to claim what I expect this time, because there is no way anyone but God can get the glory for whatever comes next.

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I could list for you all the things I want to happen. I could write out my exact plan for the most amazing act of God I can imagine for my son. I’ll give you a hint: it would certainly involve a move of God sooner rather than later. Sure, I would like to entreat God to do everything my way, but if Jesus’ life here on earth is any measure, it is unlikely that any of this will play out in a way that I would expect. Jesus healed through so many different ways, no one could predict whether he would lay hands, speak out, tell someone to wash, spit on their tongue, I mean really He clearly had no formula, He just did what He saw His Father doing. (John 5:19) People want to offer me a formula for faith, a recipe for perfect faith that is sure to move the hand of God to work in just the way I want, but if this formula existed then we would have no use for God, and Christians would lead lives markedly free from pain and suffering. (Re-reading this I worry it may present a stumbling block, so to clarify… God has given us amazing promises that He expects us to access. Most of us, including my family, live in far less victory than we should. I believe the victory comes from finding God’s presence and living in it, and using the Word of God that is stored in our hearts, but that there is no single act or confession that will provide a shortcut to God’s will.) I believe, according to scripture, that my expectations are probably too limited, what I imagine would be best probably falls far short of God’s actual plan. “Now to Him that is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus, throughout all generations, for ever and ever Amen!” – Ephesians 3:20-21

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So, although I am afraid to write it out, I will tell you that my heart is hanging on Joel being supernaturally healed from all cancer, and that my strong desire is for him to be healed this weekend, before his first palliative chemotherapy begins on Monday, before we are asked to begin anti-seizure medication which is sitting at a pharmacy waiting for us to pick it up even as I type this, before I witness Joel experience a single symptom of this new tumor. This is what I want. This is what I can ask for and imagine, but here is what I know… I know that God is moving. I can tell that God has an ending to this story that will amaze anyone who is paying attention. I know that if God does not do what I am wanting Him to do, what He does will be better, way, way better, even if I would have a hard time acknowledging that right now. I know that once I see God move, I will not look back and wish it had been different. So, I try to put my own expectations out of mind, and ignore my own desires, and just focus on God and His faithfulness to me and to His promises.
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“For My thoughts are not your thoughts, neither are your ways My ways,” declares the Lord. “As the heavens are higher than the earth, so are My ways higher than your ways and my thoughts higher than your thoughts.” (Isaiah 55:8-9)

The similarities keep growing between now and when Joel was first diagnosed with cancer. I remember I’d wake up at 5:00am almost every morning in the PICU, not because anything woke me up, I was just suddenly awake, very awake, and I knew it was time to write an update or read the bible. Here I am, asleep at 10:30pm and up at 3am, quite awake, but I know when I’m done writing this I’ll be able to fall asleep again really easily. So the strange time on my post doesn’t mean I can’t sleep at night, I’ve been sleeping pretty well. I think it means God knows that when there is nothing at all to distract me, I’m a much better listener.
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Just like, when there is nothing else to put my hope in, I’m much more faithful. Monday, the evening we had Joel’s MRI, Ryan and I marveled at how, throughout this process we kept saying things like “Our hope is only in God, because the hope that medicine provides is only a 50% chance of survival at best, and that’s not hope, so really our hope has to be in God.” Of course, logically this was always true, but we quickly saw that, had our hearts only been hoping in God this entire time, Monday would not have knocked the wind out of us like it did. I told Ryan, “Isn’t it incredible that even though what the doctors had to offer us was terrible hope, it was still easier to rest in it than in God?” Given any choices at all, my weak heart will drift to and cling to anything else as our source of rescue. God is good, and so He still has used this year to build my faith in Him, to display His faithfulness to me over and over again. It’s not that there was never any reliance in God, it’s just that it was not nearly as much as I had supposed, and probably only as much as God Himself had been working out in me, and still it felt like an amazing, steady faith. How much in my normal day to day life do I ever really trust God alone to be my provider, if this past year with Joel has been my best example of faith in God?
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Friday we had Joel’s lumbar puncture. They were checking his spinal fluid for cancer cells. They had warned us that cancer cells in the spinal fluid would really change the choices that were available to us. Again, I wanted to say, “What choices? Nothing that has been offered to us will save Joel, we have only been given the choice between things that may each extend his life by months not years, and that have no guarantee of even working at all.” Certainly if there had been an example of a situation where Joel had no hope but God, we were already in it. I had said several times that I knew that either God will save Joel, or Joel will die, and those are the only two possible outcomes.
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Then, they called us back for results from his lumbar puncture 23 hours earlier than we expected them, and the sick feeling in my stomach meant that, once again, I had overestimated my own reliance on God alone. Sure enough, Joel’s spinal fluid showed lots of cancer cell clumps in different sizes. His tumor has metastasized, meaning that localized radiation would be pointless now. (Localized radiation meaning we would have radiated his new tumor, it would have killed that tumor entirely, and then we would have waited for the next tumor or tumors to grow, which we might have been able to radiate, depending on how quickly they grew back or how many there were.) They told us we could still enroll Joel in a clinical trial, (all the clinical trials open across the country for brain tumors right now are stage one trials, meaning they are testing for side effects, safety, and dosing. These studies are not designed to even test the effectiveness of the drug, although sometimes, extremely rarely, they help someone. The term “help” is relative since even if the drug trial we were on happened to work beautifully on Joel’s tumor, if it ever got to the point where it was approved for therapy it would be taken in combination with lots of other chemotherapies and radiation.) Our doctor told us that while the study was interesting to him as a scientist for the future treatment of AT/RTs, it was not compelling for him as Joel’s doctor because now that Joel’s tumor is metastasized the chance that this trial would help him goes down even more from the astronomically low chances it had of working to begin with. The only trial we were considering is in another state. We still have a few days to decide, but for many reasons, we are pretty sure we will not be enrolling in a clinical trial.
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Our doctor talked to us about palliative care for Joel. Palliative care is designed to add more time, and slow down side effects, but will never stop the disease. We can choose between palliative care and end of life care, knowing that, eventually the palliative care will not be enough to stop Joel’s discomfort, and then we will have to switch to end of life care. The doctor described to us how the loose cancer cells in the spinal fluid can attach to the pain receptors in the brain and cause constant pain like in meningitis, and that is when they would have Joel on a pump of morphine and another pain medication / anti-nausea medication that would run constantly to try to stay on top of pain levels for Joel. He described the seizures he would expect Joel to have, how to time them and all the things we shouldn’t do when Joel has a seizure. He also told us they would put Joel on an anti-seizure medicine within the next week or two to try to prevent seizures as much as possible. Giving Joel palliative care (which in Joel’s case is chemotherapy given during lumbar punctures, and an oral chemotherapy) should kill many or all of the loose clumps of cancer cells floating in Joel’s spinal fluid for now, meaning that it would be longer before we saw these terrible symptoms, but they know that eventually, when palliative therapy fails, these are the symptoms we would see.
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Before the lab results were back we were told about our hospice options, and urged to think about it, and sign up well before we needed services so that it was not a stressful experience when it came down to it. Once the lab results were back, they signed Joel up for hospice care for us the same day. We were also given a “do not resuscitate” form to sign that day. They explained that having the form does not mean we have to use it, but that without one we have no choices at all. We were suddenly faced with facts that we were hoping would come much later in this process. It was shocking for us, as I’m sure it is for you as you read this.
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Again and again as we told people about Friday they were shocked, broken and sad. Of course, those were my reactions too, but logically I couldn’t quite understand it, because between Wednesday and Friday Joel’s outcome had not changed. The difference between Wednesday and Friday was that on Friday we had one less treatment option, and a lot more facts that were just as true on Wednesday, but that we had not been told, because they hadn’t felt it was imminent enough to warrant telling us.
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I am reminded that having faith does not mean denying what is happening to Joel. Faith means, knowing exactly what is happening, and also knowing that God has a truth that trumps every other fact. Friday’s news made us shocked, broken and sad, because it was easier to believe God would win this battle for Joel when the giant Joel was facing was blurry, seen from a great distance, up on a hill very far away. Now the giant Joel is facing is close enough for us to begin to see every wrinkle, and mole. We can feel its breath. If we were confident before because we weren’t quite sure what we were facing, then our confidence was misplaced. When the giant becomes more real, then our God must become even bigger, even more real to us. Our faith must grow to match our circumstances, we must not, no matter how tempting, try to shrink our circumstances to match our perception of God. There is no giant too big, and of course, this giant has always been the same size. Perhaps there are no men who would not have responded the way we did on Friday, who would not have been shocked, sad, and broken, but I know this for sure God was not shocked. As He has been urging us to believe for something beyond what we can believe without His help, He has known the entire time every fact, even the ones the doctors still haven’t shared with us yet out of compassion. He has seen this giant. He knows the enemy inside and out, and He is not afraid.

I want to begin this post by saying that daily I feel more sure that God has a plan to miraculously heal Joel; however, I intentionally refer to it more in terms of my expectation, or my hope. Right or wrong, I do not feel comfortable making huge declarative statement of what “will happen.” I have peace. I feel sure. However, all of you are fighting this battle with us, and each of you can hear from God. I encourage you to hear from God and pray according to what you hear. God is honored when we make hearing Him our focus, instead of making our own desires our focus.
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So, while I believe Joel will live and not die, we have begun, for the first time to talk to our children about heaven. We have not told them about our recent news, and we will not unless it becomes very clear that it is necessary, for now we will begin to talk about heaven in general terms, and possibly tell the boys stories about Joel being a warrior who has been fighting cancer with God’s help, because my dad told me the other day that if my sons could ever understand that Joel fought a very good fight against cancer and it was time for him to rest and be with Jesus that would be an incredible thing, and I agree. I hope we will never have to end our epic stories of Joel fighting cancer with him earning his rest, I hope our stories will end with Joel and God being triumphant, cancer dying in Joel, and a giant celebration throughout the whole kingdom. For now we will just talk about heaven and how wonderful it is, and tell amazing stories about Joel the warrior, and wait for God to write the ending.
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Ryan had his first conversation with the boys about heaven Monday night and it went something like this.

Ryan: Do you know everyone dies?
Caleb: We do?
Ryan: Yes, but when you die you can go to heaven and be with Jesus Heaven is amazing it even has streets made of gold.
Caleb: How do you know that?
Ryan: I know that because that is what the bible tell us. In fact, it says the gold is so pure you can look through it and see things on the other side. (Rev. 21:21)
Caleb: Wow, really?
Ryan: Yes, and in Heaven there is no more death ever again, and no sickness and no cancer.
Caleb: Huh, that sounds better than here. I want to go to heaven.
Ryan: Remember when you asked Jesus to live in your heart, and forgive you from your sins? When you did that it meant that you would be with Jesus in heaven when you die.
Caleb: Do we all die on the same day?
Ryan: No, Caleb, I don’t think that we do.
Caleb: ok.
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I’m glad I was not in the room while they talked, because although I can not deny how beautiful that conversation was, I know I would have cried then, like I am crying now while I type it.
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God has shown me some incredible things this year, and I have learned a lot. One of the most amazing things was a revelation of just how huge the love of God is for us. I am sure this is one of those “revelations” that most of you will read and think, oh I knew that, but somehow in the moment it was just a much deeper understanding for me than I had before. Months ago I was singing a worship song at church, and I just started to realize that what Jesus did by giving us eternity in heaven is the greatest gift of love imaginable. I saw that even though God desires for us to have victory here, and to overcome here, Heaven means that all who accept Christ’s gift will have victory eventually in heaven. Even if some of us never overcome the things in this life that come against us, we still win. I know that there are people for whom life on earth has never been good, who struggle and struggle and never find victory, but God made a way so that even if we fail, ultimately we succeed. I wept uncontrollably that day realizing that God has made a home for Joel, if everything I believe fails me, and we lose Joel, then Joel still wins. Joel will have victory either here on earth or forever in Heaven. Praise God, He made a way. He knows we won’t always overcome, and so He has overcome for us once and forever.
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Even writing it out, I see that I can not come close to explaining this the way I want to, I will have to trust that the Holy Spirit will make this bigger than my words, and that it can some how come close to what I felt, otherwise it is just noise. Keep praying. Our fight is not over. Joel’s fight is not over.

Wow, I am so exhausted. Ryan and I typically stay up very late at night, often past one in the morning. This week, we find ourselves checking the time and saying, it’s only 5:30? By seven or eight in the evening we are ready to call it a night. Of course we can’t because our three boys are still quite active that early in the evening. Even the idea of taking the time to write down a few of my thoughts and feelings from these past few days feels quite overwhelming, but I know I need to because so much has already happened that I am quickly forgetting things I really want to share.

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I’m sure the first question most people have is, how are we doing. Of course the answer isn’t simple, but other than the exhaustion and the overwhelming amounts of information and potential decisions, we are doing amazingly well. The grace that was so prevalent when Joel was first diagnosed is back, and unbelievably even stronger now than before. The first evening was very rough, I spent most of the night feeling like I couldn’t even look at Joel. I didn’t want to hold him or play with him because my heart was broken. The idea that some how this information could interfere with my ability to love my son was terrifying. Late in the first evening God’s incredible grace took hold, and I found myself encouraged and filled with hope. Since then, I have of course had thoughts that run away with me, but as soon as I take them captive, I find that I am mostly very at peace and quite confident.

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Ryan and I have had many moments of joy and laughter and life does not feel as unalterably changed as I presumed it would. There was a moment after the prayer night last night where I was laughing with a group of friends, and I looked over and heard Ryan laughing and talking with his friends, and I realized, “this is miraculous.” Not only did we have a level of peace that made it ok for us to talk and laugh and continue with living, but that peace extended to our friends enough that they were comfortable talking and laughing with us. I know it is a very small thing, but it really blessed me.
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Also, the prayer night itself was just amazing. I was blown away by the turn out on a week night, with not even half a days notice. I knew looking around at so many faces that loved us and loved Joel that each one of them represented so many more who couldn’t be there. I went into the prayer night really laying down any hope I had because I wanted to be sure that I had no hope in myself, or even in previous words we had received or old impressions. I just wanted to know that my hope was in God and God alone, and I wanted to be sure that I was not setting up some artificial plan for Joel based on my desires and feeling, which of course will never be neutral. I was ready for God to gently prepare me for Joel’s death, and instead what I received all night was renewed hope. At first I probably even fought it because I had worked so hard to lay it down. I left prayer so hopeful. I am very confident in who our God is and how much He loves Joel. (Also there are not enough words of thanks and love for every one of you that was able to come and pray with us. I didn’t get to talk to everyone but each and every person there meant so much more to me than I know how to express.) I have very high expectations, and I am not afraid, and just to be honest with all of you, that feels so much better than the despair I felt that first day.
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On the way home from the prayer meeting Joel threw up, quite violently about five times. It was just exactly how he used to throw up when he had hydrocephalus from the tumor the first time, and it scared both Ryan and I, but then Ryan just got mad at the devil and we sang worship songs, and he has not thrown up since, and definitely is not showing any signs of hydrocephalus at all.
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Today at the hospital they discussed treatment options with us. The short story is none of them have any actual promise, which we already knew. We are still considering things, but we will have to wait until Joel has a lumbar puncture on Friday to make any real decisions.
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Also at the hospital today we discovered that Joel has an ear infection. This was quite a relief actually as his fever kept coming back and he was very cranky. We are very glad to have a reason for his changed behavior, especially since it is a reason we can treat quickly and easily.
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I have so many thoughts I want to share, but this is already a long post. I will just wrap it up by saying that I am noticing that the only time Ryan and I both get really overwhelmed and emotional is when we get ahead of ourselves. When we begin to think about what we might face weeks or months down the road we quickly lose it, but when we are facing the things that are right in front of us we find miraculous grace and strength. I never thought this would be as easy as it has been so far, and it js just incredible to know that the reason it is easy is because God is in it with us, and we are not required to have enough strength on our own. One of the strongest impressions I had from prayer last night was how trustworthy God is. I realized that I can just trust God. (Anyone who was on the phone with me Monday night heard me say, “I just need to know what is going to happen. I can deal with either scenario if I just knew what was coming.”) Last night, I thought, “I trust God. I trust him like a little kid trusts his dad, so I can just hold His hand and walk where He’s walking, and not pull back, and stop, and ask, where are we going? are we turning here? what’s the next step? I can just put my hand in His and walk knowing I have a good Dad that is leading the way.”

I am tough to please when it comes to my children’s accomplishments.  I have always been this way.  When my kids start to talk, I never really count it as a “word” unless it is perfectly enunciated, clear as a bell.  Which means that with most of my kids, I didn’t acknowledge they were using words until they had four or five words they used on a regular basis.

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However, today’s update is not about speaking, it is about eating.  All week Ryan and my friend Erica had been telling me that Joel was eating better.  They both noticed, independently of each other that Joel seemed to be swallowing more foods.  I was in complete denial, until, this evening when Joel ate about 15 bites of meatloaf, and swallowed every bite without spitting any out!

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During the first few swallows Joel coughed a little, but by the middle of the meal he didn’t even cough.  He just chewed up the meatloaf and swallowed it like a champ.  So, now Joel can drink his bottle, eat yogurt and meatloaf.  I’m guessing this means there are all kinds of foods he would be willing to eat now.  I am over the moon!

I am very happy to report that Joel has been feeling great all day.  Joel never showed any further signs of illness: no fever, no shaking, no sleepiness, no problems of any kind.  We go back to the hospital tomorrow to have his counts checked once again, and to get an antibiotic that he gets every three weeks to protect him from a specific kind of pneumonia that people with compromised immune systems tend to get.  I am feeling very blessed right now that Joel is feeling well.

What a night we had! I just wanted to take a moment to thank all of you that saw our late night post and prayed with us last night. I never imagined that Joel would be home with us this morning, I am pretty amazed at how everything turned out.

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I have to admit that when Joel started to get his fever I was shocked and a little disappointed. One of my first thoughts was, “Joel hasn’t had a fever when his counts were down since sometime in June or July when God put it on my heart to start praying against fevers and hospitalization.” (Until God put this on my heart, I expected a fever every time his counts dropped, and he got a fever every time his counts dropped which meant a two-night minimum hospital stay just about every three weeks.) Since we began to expect Joel to stay well, he has gotten fevers but only after his counts had recovered, which meant, for the most part, no more hospital stays. Joel’s counts were so low on Thursday that I assumed he was still neutropenic last night and that he would be in the hosptial for the mandatory two night stay. I was so thrilled to discover that Joel’s counts were back up last night and that his body is fighting this illness on its own. (A few nights ago we were concerned about a fever but it never went above the limit of 38.3 and then he seemed fine for a night or two until last night.)

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I am just praising God that Joel was protected from illness until his white blood cells were back in place ready to help protect him! Even though Ryan was gone with Joel from 9pm to 3:30 am last night, I know that we both much prefer this to days in the hospital! Thank you all for you faithfulness to pray for Joel, and please join us in praising God for His great faithfulness!

These past couple days I have just been overwhelmed with emotions.  I had so many deep feelings that I could not really understand.  I know that part of this was me focusing on all of the circumstances that feel impossible in our lives right now, some related to Joel, but several not.  Then, I added to this, frustration with myself for not being more grateful for the things God had already done, not feeling more sure that God would continue to meet every need, and overcome every circumstance.  Some of what I was feeling was a general weariness, perhaps the weariness of having staggering hopes but feeling no strong  foundation for them.  As I said earlier, the things I felt were beyond the words I could find, and as I try to describe it now, I realize this is still true, because no matter what I write, it feels rambling and not fully able to portray the things that even my thoughts can’t really capture, let alone my words.

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Last night, I went to my favorite women’s prayer night.  Every time I go I walk away astounded by God, and completely refreshed.  Last night was certainly no exception.  This morning, walking into children’s hospital at 8:001 am   (yes, I was a little late)  I could not quit marveling at how Joel had finished a bottle of his formula and not gagged once, even though he had no zofran (anti-nausea medicine) in his system.  (Joel had doxorubicin yesterday, which is a chemotherapy that is very nausea inducing.)  Where yesterday I had been overwhelmed by the hugeness of our struggle, today I was overwhelmed by the goodness of God.  I was so relieved, because I really thought that perhaps I had lost perspective and that the big things God had done for us had stopped seeming big to me, and that was why I felt overwhelmed.  I am so glad to know that I am just thrilled to pieces that Joel doesn’t vomit from chemotherapy anymore.  I know this isn’t news to anyone, but I am just reminded of how truly amazing and unbelievable it is.  I remember what it was like to have to change Joel’s clothes four or more times a day because he kept vomiting.  Today he is so happy and energetic that it is remarked upon by the nurses, and I just want to scream, “See, look who my God is!  He is so faithful!  Things that are impossible for us are nothing to Him!”

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In terms of medical updates, the viral infection on Joel’s finger has now been infected by bacteria as wel,l creating a “super infection” so we are starting an anti-biotic in addition to the anti-viral medication Joel was already on.  I have been able to schedule an eye surgery date for November 10th.  Realistically, I have no idea if this date will actually work out by the time it rolls around, since any delays in treatment between now and then will mean that we have to reschedule, but I am still trying to seek God about his perfect plan for Joel’s eye, so I feel like I just call about scheduling the surgery every now and then to keep everyone happy! Yesterday we were here from 7:30 am to 5:00pm.  Today we got here at 8:00am and I expect us to be able to leave around 4:00, tomorrow, I have convinced them to let me sleep in and arrive at 10:30 am since it is only a two or three hour chemotherapy treatment.

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I wish you could all see Joel today, he is just so active and funny!

God keeps stirring something up in my spirit.  I feel like I need to really press in for Joel’s eye.  I think I need to expect miraculous healing for Joel’s eye.  I can not tell you how tough this is for me to do, to really commit myself to this level of faith.  Just the idea of committing to this publicly makes me weepy.  I began this journey with Joel really expecting an unbelievable and unexplainable miracle, over time God has come along side us and done many miraculous things that have provided for us and for Joel in small ways that make treatment more bearable.  The things God has done have amazed me, but have not been definitive in the sense that the outside world could not easily explain them away if they were determined.

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I struggle to believe for a miracle that I can see with my own eyes.  I know that even if tomorrow Joel’s eye was 100% healed, it could still be explained away by people who did not want to believe.  I definitely understand that “signs and wonders” will never be enough to change someone’s heart who has closed the door to Jesus.  Still, somehow, this feels like a whole different level to me.  I’m not sure I fully understand what it would mean to believe for this kind of “before my very eyes” miracle and see it happen.  I have believed for this kind of thing a handful of other times, and have not seen it happen, but have seen God be faithful in the deficit.  (Part of me wonders if using the word deficit is almost blasphemous, but that is part of the great theological line Ryan and I are walking day to day.  Does God have a perfect will that sometimes doesn’t come to pass?  Can we get in the way of that will?  When God is faithful in a way that is different from our expectation is that a conciliation prize, or was our expectation misguided to begin with?  How do you accept and appreciate the faithfulness of God in small things without lowering our expectation for the big things?  Can anything really be considered “small” or “big” when it comes to God’s graciousness?)

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I think we are feeling out the answers to these questions, and learning.  I think part of me had begun to lean towards the “Whatever God chooses to do is enough” side of paradox, and leaned away from the “God has greater, bigger, more and our faith activates his promises” side of the paradox.  Ryan and I have talked a lot about how in the Chirstian faith we accept many paradoxes but when it comes to faith, most of us settle into one camp or the other.  Our life has not rolled out neatly in a single “faith” camp.  I would have done anything to force my circumstances to match my theology and keep me more on the “name it, claim it” end of the spectrum.  When I found myself living in tension between the two ends of this beautiful paradox of faith, it was hard work.  It seemed easier just to slowly settle in to the “God is Sovreign” end of the spectrum and wait for Him to show me what He would be doing next.  (I really hope this is making sense, and expresses feelings that people can relate to.)  I feel like when it came to Joel’s nausea with chemotherapy and Joel getting fevers when his counts were low and being admitted to the hospital, God stirred up in my spirit, “ask Me for this to end” and I did, and He was faithful.  Until, now when that happens  (God asking me to ask for something) it almost doesn’t require faith any more.  If God asks me to ask, it is there waiting for me.  It reminds me of when my children want a snack or a treat, and I ask them to ask me for it.  (Usually because they’re crying, or just trying to go and get it for themselves, but I think God asks us to ask because we’re not tenacious enough perhaps.)

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What has been stirring in my spirit about Joel’s eye has been a little different.  I don’t feel like it’s a guarantee, except for in as much as we are all guaranteed healing because of what Christ did for us when he conquered sin and death on the cross.  Shouldn’t that be guarantee enough?  Of course it should be.  In my head it is, but in my life, I have seen expectations go unmet by me and others.  So, a different kind of faith is required, a faith that says that my past disappointments are irrelevant to the promise at hand.  There is another aspect to this as well, a nagging feeling in my spirit that I am being called not just to activate the faith I have, but to build my faith.  I guess what I am feeling is the sense that God wants to heal Joel’s eye, but that it will take a level of faith I have not attained before, a digging in to the word of God and a perseverance in prayer.  The other strong sense that I have is that I should draw a community of faith to dig in with me.  The website is part of this, and always has been.  You have all added your faith to ours this entire time, and through this, God’s graciousness has been multiplied to us.  I think another part of this is asking people who are close to Joel and who love God and have great faith, to pray with us, and to do their part to dig deeper than they have before.  I am thinking specifically of my sister and my mother and my brother (who doesn’t even read this website, so I will have to make a phone call) who have all experienced the joy of seeing God miraculously heal in response to prayer and faith.  I believe God wants to bless them to see these same things unfold in a circumstance that is very personal and close to their hearts, but again, I think it will take more than they’ve ever invested before.  I also get the sense that other people in my life who I do not expect will join us in this kind of very intense prayer and building of faith. (So, if I didn’t mention you specifically you are still invited, I’m just not sure what this will all look like yet.)  I want to thank everyone in advance who will feel any urgency to pray for Joel’s eye, and I know that many of you already have been praying and building faith, because you got this revelation long before I did.  It is very hard for me to imagine involving so many people because it all at once makes me more vulnerable and holds me more accountable.  It is hard to imagine investing this much, and being disappointed, either because I was wrong in my expectation or did not build my faith as diligently as I should have, but this is where I have to once again set aside the pride that would try to convince me not to try.  If you don’t feel a pull to pray for Joel’s eye, please pray for me, because as much as I want to continue to be called onward and upward by the God I love it is a terrifying prospect to be asked to step things up on my end.

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For a few days now little things have been stirring up these thoughts within me.  I always give this sort of stirring a few days to settle in (probably mostly hoping it will go away.)  Last night, during prayer time before bed, Caleb and Isaac were going to prayer their typical “God please help Joel get better. Amen” prayer, but instead Caleb said “I want to pray for something different, well mom, does Joel need anything else to get better?”  I told Caleb we needed to pray for Joel’s eye to get better.  Then Caleb prayed for Joel’s eye, and said, “Mom, Can we keep praying for Joel’s eye until it is all the way healed?”  and I said yes.  Then he said, “And then, after his eye is healed, we can pray for his cancer to be healed!”  From the mouth of babes.

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So, I am going to try to be diligent, and I am going to pray with expectation every night.  (Ryan and I had a conversation the other night when I saw Ryan watching Joel intently after praying for Joel’s eye.  I said, “Are you watching to see it happen?”  He said yes.  I said, “So you’re not in the ‘A watched pot doesn’t boil’ school of healing?”  He laughed at me and said, “No, I want to see his eye healed, so I can tell people I watched it happen.”  I share this story to show you just how far I need to come, I have become so weary and nervous about this kind of miracle, that I pray and feel like I should I keep my eyes closed and not “check” because you know, peeking at the wrong time could totally undo it.  Trust me, I understand how ridiculous this is.  I fully expect to see miracles.  I have a few very specific things I believe I will see fulfilled when it comes to healing in my life and others, and I have always said that if I do not pray for someone to be raised from the dead and see it happen before I die I will be disappointed.  Somewhere my spirit knows that I am called to this level of faith, but my flesh still needs to close its eyes and try not peek.  (See now you know that when Joel’s eye is healed, two miracles will have been performed, one in Joel and one in me!)