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We are going to have a prayer night for Joel. It is this Sunday night, the 8th of December at 7pm. It will be in Fort Collins at our church, Third Day Victory Church, 1119 W. Drake Rd. #C-30. Everyone is welcome, so if you are local and want to come, we would love that.
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I was thinking this week about how these prayer nights are probably more for Ryan and I than they are for Joel. I jokingly refer to Joel’s cancer as “The Cancer That Cried Wolf” because we have been in this same position so many times. I wish it were enough for me to be able to say, “every other time Joel has been fine, and he will be again,” but at least for Ryan and I, every new catastrophic situation with Joel requires new faith, new promises. We always have to find our feet all over again, and the prayer nights are always how we do that. We usually go into it pretty weepy and feeling sorry for ourselves and leave built up in faith, encouraged by the community of people who have not grown weary in this long fight, but pray for Joel and us faithfully. There are always words from scripture and from the Holy Spirit that help me find my place to stand through the new trial. Something about spending an evening in the presence of God in a community of strong faith restores whatever is lacking in our spirits, and it just reminds me all over again how vital the whole body of Christ is. We could not believe for Joel like we have without so many joining us.
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Every prayer night has been different, but each one has been so amazing for us. So, if you are free this Sunday evening, don’t make plans, come join us in worship and prayer instead. Ryan told me this week “I feel like the spiritual wind has been knocked out of me,” and I can relate to the feeling. I think the devil tries to lie to us and discourage us, he tells us our reservoir of faith is empty, that we have nothing left. I know that’s not true, but even more than that, I know that even if it were true, that’s why Christ unites us as His family, so I don’t have to have super faith, I just have to have super friends and family willing to surround us and build us up when we are weak!

The changes we see in Joel are happening so quickly that it scares us and makes us emotional. Joel’s hands shake when he tries to eat now. He shakes so much that he mostly won’t eat unless we feed him. His cup tips backs and forth when he takes it up to his mouth When he tries to use a spoon it swings slowly up and down until he kind of catches it in his mouth, if he doesn’t hit his mouth a time or two first. When he tries to pick up a slice of hot dog with his hand, he opens and closes his hand several times before he actually grasps the hot dog. Basically, his fine motor skills are gone.
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I told his doctor yesterday that I thought Joel’s upper body was also weaker than it used to be and that I notice his hands shake when he drinks from a cup. I told him that seemed odd to me and that I didn’t think the nerves at the base of his spine impacted by the tumor could be responsible for this. He agreed. So, now he wants to do a lumbar puncture on Joel on Friday. His suspicion is that there may be lots of cancer cells in the CSF and that those cells may be causing neurological problems for Joel. (Even a few years ago when Joel had clumps of cancer cells in his CSF we did not see symptoms like this.) We’ll know more on Friday, but at this point, the probable tumor near Joel’s brain stem and the potential for cancer cells in his cerebral spinal fluid feel much more urgent than Joel’s spinal tumor.
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The radiation Joel will get will just treat the spinal tumor. We will make a plan about what to do from here based on how quickly things accelerate, and the results we get from the lumbar puncture.
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Every time Joel is facing something this difficult I marvel at my lack of faith. How many times does God have to rescue us before I trust that He really does finish what He starts? After over ten tumor recurrences, how can I be this scared, this weepy, this unsteady? All I can do is praise God that He is faithful even in the face of my unfaithfulness, and trust that He loves me and will give me a firm place to stand. He will show me how to see Him and not my circumstances. He will remind me of His steadfast love, and it will calm the quaking in my heart. I know this is true because perfect love casts out fear, and He is perfect love and he meets me in all my imperfections and reminds me who He is, once again, never impatient with my short-sightedness, but inviting me to see with His vision.

I just felt like I needed to revisit my post to add that even though it was not the outcome we hoped for, we are glad the treatment decision was taken from us. We hate having to make decisions, and we hate the idea that we could ever look back with “what ifs.” We find that usually, given time, the decisions are made for us, and even though it was the quick progression of disease that made this decision, it is still a relief. However, what was really on my heart to add was this: God is more faithful than I can ever anticipate. We have gone into each of the past few Christmas seasons with things looking bleak, always wondering if there is really any way out this time, and by Joel’s birthday in January we are always amazed at how well Joel is doing. Right now things feel bleak, but my spirit is saying, wait and watch.

Our trip to New York is off. When our doctor saw Joel walking today he was immediately concerned, he noticed the way Joel’s feet have turned in. (I noticed this yesterday.) Joel has seemed worse every day this past week, and we had begun to wonder whether or not he would be able to wait the two more weeks until he would be eligible for the trial. Today we got our answer, and the answer was no. Our doctor, who wanted to put off radiation as long as possible, is now strongly advising us to do radiation, quickly. We agreed. So, instead of leaving for New York Wednesday afternoon, we are doing radiation planning on Thursday morning. Joel will have two weeks of radiation. (If they can start on Monday we would be done by December 23rd, if they start any later than that it will go through Christmas.) Radiation over Christmas shouldn’t bother me, but it does, it always seems worse to have to take Joel to treatment around Christmas.
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In addition to the balance issues and weakness that I had noticed, our doctor noticed that one of Joel’s pupils is more dilated than the other, and that his other eye is open wider than the one where the pupil is more dilated. When I asked him what he thought caused this, he told me that there is a spot near the brain stem that has been enhancing. Since it never grew they weren’t sure what to make of it, but now he suspects this spot is actually tumor, and that things are progressing very quickly now (as evidenced by the degradation we’ve seen in the last week.) So, we’re not certain, but it’s likely Joel has a quickly growing tumor near his brain stem. This is not good news.
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Re-reading that last sentence makes me desperately long for some good news. This is our fourth Christmas now where our biggest concern has been Joel’s life and death tumors. I was really hopeful that this was going to be a good Christmas, and I can’t really complain because all of our Christmases have been good, and every year people have blessed us and comforted us in ways we couldn’t expect, but I wanted a Christmas without cancer. (And I would have happily settled for a Christmas where cancer was just whispering in the back of our minds instead of shouting directly in our faces.)

Joel seems a little weaker to us. His balance seems worse. It is all so incremental that it is hard to know when to be concerned. Joel still gets around and does the things he wants to do, but I notice that he waits to get down from chairs until someone will help him. When he stands in one place he takes lots of little stutter steps forward and backward to maintain his balance. He seems to want to hold hands more often when he walks, but he took a long walk today from a parking lot into a store, so he can still walk ok and doesn’t seem to be in pain. It’s just that there are noticeable differences that make us sad for him, and make us wonder if he can wait out the three weeks to start the trial, and if we should not let him wait but just move forward with radiation. I wish these choices were cut and dry. Please keep praying for us to have wisdom. Joel will see his oncologist on Monday for a checkup, then we’re planning on taking a little trip with him later this week, so please pray that Joel will have extra energy, strength and balance on our trip!

We went to Children’s Hospital yesterday and discussed our treatment options. We spoke with our radiation oncologist, who felt fairly optimistic that radiation could effectively treat this new tumor. He is optimistic because even the very small half doses he gave last time were very effective against those tumors, and even though this far into Joel’s treatment the tumors should be fairly resistant to radiation, Joel’s tumors never have been. He cautioned us that he can’t imagine that will continue to be the case forever, but he was very willing to radiate this new spot. He also cautioned us that the spinal cord and the nerves are very fragile, that it is easy for the tumor to damage the nerves and that sometimes that damage can not be reversed by radiation after the fact. So the idea of doing the study and following it up with radiation if the study fails to help Joel is not without significant risk. He would radiate Joel’s tumor over ten days.
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After speaking to him we were pretty convinced that we would just do radiation. It has the greatest chance of helping Joel right now and it is fairly easy on him in terms of his quality of life during and after treatment.
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Then we met with the head of experimental protocols. She told us the study we had talked about months ago has just begun to allow children under five. (Weird to think that Joel is only just about a month and a half under five at this point.) The trial is stage one (never very promising) but it is at the highest dosing for stage one. The drug is a standard chemo that has been used in adults for lots of kinds of tumors, but never for brain tumors because it was a drug that did not cross the blood/brain barrier. However, this new formulation does cross into the brain. The study is designed to see how effective it is on high grade gliomas, but in stage one any kind of brain tumor can be in study. (There aren’t usually studies specifically for AT/RTs because they are too rare for a cure to be very lucrative.) However, since chemotherapy is not a targeted medication it’s not looking for specific gene variants, it’s just finding quickly dividing cells and killing those, and AT/RT recurrences are quickly dividing cells so it has as much chance of being effective on AT/RTs as gliomas or other high grade brain tumors. What made this compelling for us is that there is a patient here who has been on the study since the first round (the lowest dose) and it has been surprisingly effective in treating her tumor (not an AT/RT but a recurrence of another kind of brain tumor which normally would have led to explosive growth by now.) The medicine is working for her. So, we can’t help but think, what if it works for Joel too. To me, the great thing about trials is they either work or they don’t, and if they don’t work you stop, and in our case go back to radiation. The big hitch of course is that if it doesn’t work and the tumor grows enough to damage Joel’s nerves in a way radiation can’t reverse that would be devastating, but in the end radiation is localized and can’t do anything about cells in other places of Joel’s brain and spine. Whereas if this works it would work systemically. There’s never really much concrete hope that trials will work. All effective cancer treatments are combinations of multiple agents, not just one chemotherapy, but the only reason anyone ever enrolls in trials at all is the big “what if.”
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So we’ve decided to roll the dice on the “what if.” There is no easy answer for Joel, the radiation we could choose to give Joel could actually end up damaging Joel’s nerves in the same way we are hoping to prevent the tumor from doing, since it would be given a second time in the same location in just under a year. The trial could be unsuccessful and cost us time Joel doesn’t have. We’re going to try the trial. Joel is fourth on a waiting list, and when spots open they open three at a time. However, sometimes parents make different treatment choices and come off the list, so 4th isn’t terrible. Joel has to be off avastin for 6 weeks before he can start the trial, and tomorrow is three weeks off, so we will have to wait at least three weeks before Joel can start, even if a spot opens up for him. If at any point in the waiting to start the trial, or after that, we notice Joel’s symptoms get worse, we will probably drop everything and go back to radiation instead.
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So for now, we wait, and pray that the waiting doesn’t harm Joel in any way, and pray for wisdom to make the best choices when there are no best options.
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Caleb has not vomited for six days now. We are very relieved since, after having labs come back fine, our next test would have been an MRI. Caleb’s school was very patient with us and so helpful with him, when we sent him back to school still struggling, but a teacher bough him a gatorade during his planning period, and he was allowed to wear sunglasses and lay down in the back of the room when he wasn’t feeling well. We have wondered if the vomiting was anxiety induced, but now we mostly just hope it’s over.
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I’ve felt discouraged with this latest round of tumor. I found myself crying in church, asking God, “why not now?” and “when?” Even though I know that God doesn’t usually answer the “when” question, but I ask it anyway because my heart is screaming “How much longer until Joel is finally healed?” I know God is faithful, and that he loves Joel and loves us, I even really believe that Joel will live, I just wish I knew if we were looking at five more months or five more years of ups and downs while we wait. In the middle of all my questions, I felt a new question rise up in my spirit, “Would you trade your timing for Mine?” and the answer was no, a quiet, sad no, and a please don’t ever really let it be up to me, because there are moments I might say yes. In the end, I want God’s perfect timing. I do not want God to be robbed of any fraction of the glory He deserves for healing Joel, and so I want it to happen at the right time. Millions of people have heard of Joel because of his facebook page, and his youtube video, and all the articles written about the video game Ryan is making about Joel called “That Dragon Cancer.” I believe God wants millions to see His faithfulness to Joel, and so despite my complaints that I don’t know the “when,” I’m trusting that God is working together an amazing testimony for Joel, one that I may spend the rest of my life carrying to lost and broken people. I know that I will not look back and wish it had been different.
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Finally, I just wanted to say how encouraging it was to read the comments on this site today. It matters that you love us and pray for us and take the time to write and encourage us. So many of the things you all write for us have been God’s word directly to my heart at the right time. I don’t thank everyone enough.

The tumors we were aware of all continue to shrink, one may even be gone entirely. However, the base of Joel’s spine has some new tumor growth in the area we radiated last year. It is beneath where the spinal cord ends. It is not one big tumor but more like little clumps of tumors that are clinging to the nerve endings. They suspect this explains the balance and weakness issues we’ve seen. Before the scan our doctor noted that Joel had some new low muscle tone. These tumors are not an immediate threat but they need to be dealt with in some way pretty soon because they can impact bladder and bowl function as well as continue to impact Joel’s muscle tone until he has permanent issues.
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The plan is to either do more radiation (at a lower scale since his last radiation to this area was just barely a year ago,) or to put Joel on a new study. We will meet next week with the head of experimental therapies, and with our radiation oncologist. Our doctor is wary of more radiation so soon, and points out that if we do the study and it fails we can still do radiation, but if we do radiation we can not follow that with the study. We have some decisions to make. The results are fairly disappointing, but at the same time it’s hard to feel too discouraged by one growing tumor, and no new tumors at this stage of things!

Joel is having his MRI as we speak. We’re waiting to get called back to pick him up from the recovery room. Today we’re feeling pretty excited to see concretely what God has been up to. We are still marvelling at the fall we’ve had, free from the pain and suffering we expected after the very bad news we got in August. Our last MRl, about six weeks ago, showed that his tumors (five or six depending on how you count) were all shrinking but still there. We’ll know more in a few hours.

Joel was scheduled to have an MRI in early December, but when we called to find out the exact date they told us that December was completely booked, but November 21st opened up, so suddenly, we are having Joel’s MRI this Thursday. We are excited to see what is going on with Joel because he seems to be doing so well.

We went back to the hospital on Thursday last week. Joel was able to get his avastin again, so it was wonderful that the insurance approval worked out. The steroids had made Joel feel terribly weak and tired, but he was off them for a few days before his Thursday appointment and it really seemed like he was doing much better. Sure enough, we tried Joel on the same stairs as his last visit and Joel did great! He was not leaning back and pulling himself with his arms anymore.
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Our doctors believe that the steroids helped and the avastin should help anymore. It is pretty nice that the stair-climbing scare was over before it started. The last few days Joel’s balance seems off, but he also has a bad cold and had some low-grade fevers for a few days, so we suspect that he just hasn’t been feeling great, and that his cold had effected his balance.
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There is one unusual thing happening in our family that you can pray about. Caleb has been vomiting every three to five days for the past few weeks. It is a little upsetting for us because everything with Joel started with vomiting. It really doesn’t seem like it can be a stomach bug because it has lasted so long and because he does really well in the “in-between” days. Caleb’s doctor seems to think that perhaps he had a stomach bug initially, but then his stomach became overly acidic. We’re testing that theory now with antacids and probiotics. It has been difficult for Ryan and I not to be nervous, so you can pray for us to have peace while we test out the “normal” causes and solutions. We really don’t want to jump to conclusions, just because we’re cancer parents, but it’s difficult not to just beg for an MRI.