Centipede on a Stick

Did you know that in China you’re more likely to find centipede on a stick than a corn dog? (Think about what exactly is in a corn dog before deciding which one you would rather eat!) Peter saw this fact in one of his Weird But True books and decided he would like to try it – along with fried scorpion, exotic fruits, and other unusual and delightful foods. You may have heard of the Make-A-Wish Foundation, which grants wishes to children with a life-threatening illness. A representative met with Peter to discuss his wish. They were thrilled that Peter came up with something entirely unique in the history of Make-A-Wish: to be “an adventurous foodie,” as they put it. At least it wasn’t just another trip to Disneyland. With this wish the Make-A-Wish teams in San Francisco and the Central Valley got to do some searching. And they found insects, sea creatures, enormous eggs. There are pictures below.

On Friday, April 28, I introduced the night with two biblical passages. I can’t help it, I’m a pastor. In Acts 10 the apostle Peter has a vision of a sheet lowered down from heaven filled with all kinds of animals, reptiles, you name it. A voice says, “Get up, Peter. Kill and eat.” For a Jewish person the thought of eating anything non-kosher was not only against religious tradition, but repulsive. Perhaps the way many people think about eating a tarantula, scorpion, or cricket. So Peter tries to take a pass on that offer. But God insists, the point being, “Don’t call anything unclean that I have called clean.” The reference is not only to foods, but to people. Non-Jews are also welcomed into the kingdom of God.

Fittingly, one of the biblical images of the kingdom of God is a feast. So the other passage I referred to is Revelation 19, where it is written, “Blessed are those who are invited to the wedding supper of the Lamb.” The Lamb, of course, is Jesus who died and rose again. The wedding refers to the union of Christ and the church. A wedding supper was the biggest celebration around. Blessed are those who are invited indeed.

What will be served at this wedding supper of the Lamb? Crickets? Scorpion? Tarantula? Ostrich egg? Mealworms? Alligator? Those were all on the menu for Peter’s Make-A-Wish event. The sad reason for our gathering was that, apart from a miracle, Peter is going to be the first to find out what is on the menu in the Lamb’s wedding supper. We are in the depths of sorrow over losing our son, but glad to know that he will be with the Lord, who already died and rose from the dead. Peter will die in Christ and be raised in Christ.

Despite the acknowledgement of the sad reality, the event was full of joy. Kids grossed each other out. Adults politely declined offers of insects. Peter eagerly tried it all. Dried tarantula? Crunch. Scorpion? Gulp. Crayfish? Slurp. Cricket pizza? Yum. Ostrich sliders? Sounds good.

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The chefs at Bella Luna in Merced did a spectacular job. We had no idea what to expect. They brought out tray after tray of exotic foods.

Oh, I didn’t even mention the fruits: rambutan, jack fruit, durian (famous for being stinky), cherimoya, mamon, dragon fruit.

Dessert included chocolate covered crickets and red velvet cookies with an insect conspicuously poking out from the middle.

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Did I try it everything? Of course! So did my other two boys. I’m proud of them.

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Peter traveled in style. The limo even included lasers. Throughout the night he smiled. It was a blessing.

By the way, the exotic feast continues. There was a fake-looking but very real ostrich egg left over. We took it home and made scrambled eggs. There was enough for sixteen people to eat from. And it’s amazing what you can find on Amazon. Earthworm jerky, smoked rattlesnake, goldenberries, and other delights arrived in the mail today.

But there was one thing that nobody could find, the thing that started it all: centipede on a stick. So here’s a call to my Chinese friends – do you know of a place (in Chinatown?) that sells centipede on a stick?

Whatever’s on the menu, here’s to the wedding feast of the crucified and risen one!

 

And how is Peter? That question is difficult to answer. I’ll write more later. But here is a brief multiple choice quiz for you.

Peter is

A. Dying

B. Happy (usually)

C. In pain

D. Busy seeing friends and family

E. Eating weird foods

F. All of the above

 

Peter would tell you that when a question says “all of the above” that it’s always the right answer.

 

Sailing Over the Edge

Yesterday afternoon I finished reading The Voyage of the Dawn Treader to my two younger kids. Everyone was in the room as I read the final chapters, when they sail to the utter East, the end of the world. There the three children from our world and the talking mouse Reepicheep come to a shimmering wall of water standing like a permanent wave. What lies on the other side no one knows; Reepicheep had always pictured it as the edge of a great waterfall. And at the bottom, Aslan’s country. They could actually glimpse Aslan’s country beyond the sunrise, where they saw a range of mountains of unbelievable height. But rather than being covered with ice and snow they were covered with forests and waterfalls as high up as they looked. And the mountains filled all the sky. Reepicheep took his tiny boat and sailed up and over the edge and was never seen in that world again.

I have always found this tantalizing glimpse into the next world thrilling. Doesn’t everyone long for heaven? The more extensive – but certainly not exhaustive – tour of the new heavens and new earth recounted by John in Revelation can be challenging to understand, but I find it even more exciting. As I have written recently, we have been reading those descriptions of the new heavens and the new earth together. They fill us with excitement and joy.

Did I write this already, that when I asked Peter what was most exciting about the vision of the future world in Revelation he said, “Seeing God. Eternal life. Being kings forever.” It does indeed say “they will reign forever and ever” (Revelation 22:5). Isaac added, “Yeah, and no more sadness or fear.” If that isn’t enough for you, it is described as a place of stunning beauty. Thinking about it now makes my soul hurt with longing. The New Jerusalem is that place, it is the people of God, it is the presence of God – those three things.

Our son Peter is sailing towards the edge. Soon he will be seeing God, entering eternal life, and reigning with the King. He will enter the place, join God’s people, and stand in the presence of God.

On Thursday morning Peter had a CT scan. That afternoon we met with the oncologist. When Peter is present the oncologist struggles to give bad news. That bad news, obviously, is this: Peter is going to die. Radiation has shrunk the main tumor in his chest, but already there are other tumors in his lymph nodes in his neck, in the lower part of his torso. There is even a tumor you can see and touch on the right side of his ribs.

We all cried, of course. Peter’s tears upset us. He has hardly cried through this five month journey with cancer. We asked and he said he was sad, but not scared.

After a few minutes Peter looked at his watch and saw that it was time to return to the Family House for their Easter party. That night Peter played games with friends, ate dinner, enjoyed a mango from the two boxes that another resident there brought specially for Peter. At bedtime Rebecca and I cried. Peter gave us each a hug and a smile.

On Friday morning I called the doctor for more information. How long? Weeks to months, he said. On the drive home we stopped at a home that provides end of life care for children. To be blunt, it is a place for kids to be as comfortable as possible when they die. We wanted to see if it would be an option for us. Peter kind of nodded as we left the well-kept five acres.

We told the news to our kids when we came home on Friday. Good Friday. We held each other and cried. After taking some time to absorb the news, we did normal things: finished The Voyage of the Dawn Treader, ate dinner, watched a Nature video. We also did a Good Friday family worship time. The kids took turns reading about the suffering and death of Jesus, we sang and listened to several songs, some of which made the tears flow.

From Come Ye Sinners:

View Him prostrate in the garden;
On the ground your Maker lies;
On the bloody tree behold Him;
Sinner, will this not suffice?

And Tis Midnight and on Olive’s Brow:

‘Tis midnight, and on Olive’s brow
The star is dimmed that lately shone;
‘Tis midnight in the garden now,
The suff’ring Savior prays alone.

‘Tis midnight, and from all removed,
The Savior wrestles lone with fears-
E’en that disciple whom He loved
Heeds not his Master’s grief and tears.

‘Tis midnight, and for other’s guilt
The Man of Sorrows weeps in blood;
Yet He that hath in anguish knelt
Is not forsaken by His God.

‘Tis midnight, and from ether-plains
Is borne the song that angels know
Unheard by mortals are the strains
That sweetly soothe the Savior’s woe.

I was more able to enter the suffering of the Savior because of our own suffering. We talked about the ways in which Jesus suffered: betrayal, mockery, beating, an unjust trial, crucifixion. But before any of that, he already told his disciples “I am overwhelmed with sorrow to the point of death.” I pointed out that as much as Peter has suffered, and as much as he will suffer, he doesn’t have to carry the weight of the world’s sins. He doesn’t even have to carry his own sins. Jesus took them.
At some point on Friday the social worker from the hospital called Rebecca. Peter overheard Rebecca telling that we had visited the children’s home in the morning. “It was really nice,” she said. Peter, laying reading on the couch, suddenly gave a thumbs up and an enthusiastic nod.

“You liked it?” I asked.

“Yeah.”

“So you want to go there?”

“Yeah, but I wouldn’t want to stay there for very long.”

“So just at the end?”

“Yeah.”

Peter is peacefully making decision about where he will die.

On Saturday I woke up sobbing. I am crying now. Partly because of sadness, but then partly because we have such a wonderful child. We are amazed at how he is facing death.

 

After Reepicheep sails over the edge of the world, the children walk through the shallow water until eventually they meet Aslan on the land. He explains that two of them will never come to Narnia again. Instead they must come to know him in their own world, where he has a different name. And from our world the way into Aslan’s country is not over the edge of the sea, but over a river. “But do not fear that,” Aslan says, “for I am the great Bridge Builder.”

To enter the kingdom of God, a person must die and be raised again with a new body. Precisely what we celebrate today, the day of the resurrection of Jesus Christ, the suffering Savior. Peter’s attitude is still “What is there to be afraid of?”

 

Our plans for the day: worship with a local church, eat, dance, laugh. And probably cry. I’m glad we have family in town to do it all with. And in the evening we will head back to San Francisco for one more meeting with the doctors tomorrow, and a little more radiation to keep the tumors under control for a time.

One more thing: I’m sure you will understand if we don’t respond to messages for a while. They are appreciated, so go ahead and send them, but we are occupied with other things for the time.

 

A Good, Normal, Busy Weekend in the Valley of the Shadow of Death

Peter was able to go home on Friday. On Saturday he spent the afternoon playing with friends. We tried out a new game called Keep Talking and Nobody Explodes, in which you use a “Bomb Defusal Manual” to talk someone through disarming a bomb they see on the computer screen. Peter enjoys defusing bombs, but he likes giving the instructions even better. He is good at explaining how to disarm bombs; only occasionally did he let someone blow themselves up. After an afternoon of fun, his friends’ whole family joined us for a great dinner. They even brought exotic fruits to sample, something Peter has been eager to do. Dragonfruit and Kiwano, (aka African Horned Melon) were tasted by all.

Our Sunday was the way I imagine Sundays should be for non-pastor families. For pastors like me, Sundays are a workday – a workday I enjoy, but they are workdays nonetheless. I am now in the situation of missing the activity of being a pastor but enjoying a normal Sunday. We worshipped with the church in Delhi that hosted our church plant, redeemed some In-N-Out coupons the kids earned by reading books, used coupons for a better meal for me and Rebecca at a burrito place, got a treat at Yogolicious, and went for a walk on the campus of the local university. Over yogurt we discussed some ideas from the sermon. On our walk we tossed a Frisbee.

Peter feels that good. Except that while playing Frisbee golf on the campus he complained that his joints hurt. During one throw “they all hurt at the same time” and he ended up on the ground. Sunday evening we had visits from several different friends. It was a good, normal, busy weekend, even despite the fact that Peter has cancer.

The new treatment plan will allow us to return home for the next few weekends. Instead of the planned two weeks of radiation (Monday-Friday) he will now be getting four, but at a lower dosage. So far the only noticeable effects are an occasional cough. We thank God that his throat does not hurt at all. If it did hurt as they predicted – enough to prevent eating – it would have been miserable because he has a raging appetite. It’s like he’s a growing teenager. But actually, it’s steroids. Steroids kill tumors, so he’s back on prednisone for a month as he gets radiation. What a change! He went from desiring nothing to desiring everything, and lots of it. He didn’t eat meat for weeks, but now he’s suddenly putting away steak and sausage. Additional calories leads, of course, to additional weight, but rather than a normal pattern of weight gain these steroids lead to a swollen face and belly. Concurrent with the radiation and steroids is a chemotherapy drug that targets one of the specific mutations that is driving the growth of the tumor. He receives that once a week.

Lining up the lasers

We hope and pray that this combination of therapies works. They need to achieve complete remission in order to move on to the only real possibility of a medical solution, a bone marrow transplant. Instead of using me or Nate as a half match, they have activated a full match, which means the donor will have blood drawn for additional tests.

Weight gain from steroids is a good thing, considering that Peter will probably not feel like eating for several weeks after the transplant. He will be in isolation for a couple weeks. He will be confined to the hospital for a couple months. Hygiene will be of utmost importance. He will have the immune system of an infant, making him extremely susceptible to colds and other common sicknesses for the first few years. The process will most likely make it impossible for him to have children in the future. We asked the bone marrow transplant doctor, “What is the likelihood that a bone marrow transplant will lead to a person being disease free in five or ten years?” Around fifty percent, she answered. Not good odds, but better than nothing.

We talk matter-of-factly about Peter’s cancer and possible death. We take our cue on this from the Apostle Paul, who wrote from prison to the new believers in Christ in Philippi. Paul knew that his imprisonment would lead to one of two outcomes: he could be released or he could be executed. Paul’s attitude toward death is clear as he considers which he would prefer:  “Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body.” Paul’s personal desire was to depart and be with Christ. Death held no fear for him. How different this attitude is from all the avoidance and denial we see. And yet Paul recognized that his continued life would be better for them. We likewise feel that Peter’s continued life would be good for us.

So Monday morning while doing a Bible study on the picture of the future in Revelation 21, I asked what God’s servant John might have felt when the Spirit took him “to a mountain great and high, and showed me the Holy City, Jerusalem, coming down out of heaven from God. It shone with the glory of God, and its brilliance was like that of a very precious jewel.” The boys agreed that he would feel both happy and sad: happy to see it and sad that he couldn’t stay. Isaac combined the words and said he felt shappy.

So then I made it personal and said to Peter, “We know that you might die from cancer.”

He nodded. “If you get there before us, how will you feel?”

He described his feelings and then I asked, “And how would we feel if that happened?”

He gave his own twist on their newly coined word: “Shad,” he said. “Sad that I’m not with you but happy that I’m there.”

“That’s exactly it,” I said, “Although I think we would feel the sadness stronger. But when we join you there…”

“Then it will be happy.” And God will wipe every tear from our eyes, for there will be no more death or mourning or crying or pain. There are a few tears for us to wipe away right now.

So that is how we live and how we talk in the valley of the shadow of death.

 

I will fear no evil, for you are with me.

Radiation & Resurrection

After a couple high doses of radiation and a few days on steroids, the tumor in Peter’s chest had shrunk by a third. His chest was visibly smaller and the blue veins radiating out from the bulge were much less visible. The topography of his chest had changed so much that the lasers that align the machine to the marks on his chest (made with the high-tech medical instrument known as a DecoColor pen) no longer lined up right. They had to do another CT scan and recalibrate the machine that delivers the radiation. The radiation oncologist decided to lower the dose of radiation to something gentler, in the hopes of producing less pain in his esophagus in the short term and less damage to his heart and lungs in the long term.

After a few days in intensive care, Peter was able to return to the oncology unit. A day later they discharged him to stay at the Family House and do radiation as an outpatient. This weekend we expect to return home. He will be back for radiation each day next week.

This is all good news.

But.

We have been in this place twice before, where the tumor responds so well to treatment, then stops completely. So as I wrote before, we are still hoping for healing, but preparing Peter for heaven. Our approach has been to hide nothing from Peter. He knows all we know. We talk openly about the possibility of death.

Never have I been so grateful for the central article of faith, “I believe in the resurrection of the dead.” The prophet Hosea said it and the Apostle Paul repeated it at the end of a section of writing on the resurrection (1 Corinthians 15): “Where O death, is your victory? Where, O death, is your sting?” Death still brings terrible sadness, but it doesn’t terrify. Because it isn’t the end. In fact, for those who belong to Christ, death is the entrance into his presence. The previous verse quotes Isaiah, “Death has been swallowed up in victory?” And a well-known passage in Romans 8 says that nothing in all creation, neither death nor life, can separate us from the love can separate us from the love of God that is in Christ Jesus our Lord. “We are more than conquerors through him who loved us.” I find it thrilling the way victory over death is combined with the love of God in these verses. So death is the entrance into the presence of the love of God.

The gospel gives confidence and hope. This confidence has allowed us to have open conversations with our son about the possibility of dying, and dying soon. Look, even if Peter is healed completely and miraculously, he still needs the resurrection because someday he will die. Healing is temporary, pointing us to the eternal reality of the kingdom of God, in which there will be no more death or dying, pain or sorrow.

There are other families whose children have been sent to hospice care, meaning there is no possibility for further treatment. Their child is going to die. Some parents choose not to tell their son or daughter that they are going to die. The confidence that comes from the resurrection lets us talk openly about life and death. Because “Where, O death, is your sting?”

Other people are unable to accept the fact that Peter might die. They insist that we just need to have faith. That we need to keep hoping. We do have faith! We do have hope! Strong enough to face death. Isn’t this a great part of what Jesus modeled and taught? Jesus came not only to heal, but to conquer death itself. Our desire, of course, is for our son to live many healthy years, but we have no guarantee of that.

In the past few months I have faced greater fear than ever before. And that fear created more fear. I have wrestled with doubts. There were weeks in a row where I felt like all I could do was simply exist, not do. I have cried a fountain of tears. I have prayed desperate prayers. I have waded through waters of grief and sorrow.

What I feel now, surprisingly, is confidence in the love of God. And with that comes peace. As I prayed and meditated yesterday my heart surged with love for God. This feeling may be a temporary respite before the next onslaught, but I am grateful for it even so. I fully expect to face more pain, especially if Peter declines towards death. It is not going to be comfortable to watch. But I expect this confidence in the love of God will continue even then. Or at least it will return.

Where does this confidence come from? It comes from the resurrection, of course. But I feel I have received this confidence in the love of God and the victory over death in a small part through the practices of prayer and fasting. But this is so unexpected that I am convinced that the greater part is received as a gift from God given in answer to the prayers of so many. I am experiencing the gospel in deeper ways.

What about those socks? A family that I’m not sure we even know sent a pair of socks with lightning shaped slices of pizza on them. Their quirky gift hit the mark. Peter pulled those socks on immediately. Combined with his T-Rex shirt his clothing attracted a lot of comments and drew a lot of laughs. When you know there is resurrection, laughter is appropriate even in times like this.

Radiation and Silliness

Peter got one dose of radiation on Friday. He will get another each day Monday to Friday. The swelling is less and he is feeling better. He should be out of the ICU and back on the oncology unit in a couple days.

Yesterday and today we have had friends visiting. They drove down from Washington to be with us and take a vacation during their spring break.  Peter has been having fun with them. He reminded me today that when we stayed with them for a night last summer his friend set the alarm for 5:00am so they could get up early enough to play Minecraft together before we hit the road.

This morning Peter was his usual silly self. It’s hard to be sad when he feels so good.

I would say today’s pig is less puffy and more perky than yesterday’s.

A gallery of mostly silly photos:

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This evening a family that used to lead worship for our church in Delhi, CA came to visit. Thirteen people in an intensive care room is technically not supposed to happen, but we got away with it. We played a couple ridiculously long rounds of the game Things. They led worship for us in the hospital room. I’ll just say what I feel about these visits: it’s good to be loved.

Tomorrow while the younger kids are at the school room in the hospital we will begin serious Bible study and discussion about heaven, the resurrection, and the kingdom of God. Reading C.S. Lewis’s Last Battle helps jump start our ability to imagine the kingdom.

On the Edge of a Cliff (for the third time)

Three times we’ve received bad news. Each time there is a treatment that might get rid of the cancer, but each time the chance of it working is less. We are at that point again.

I wrote about some of the strange symptoms Peter was experiencing over the last few days: ringing in his ears, pain in his shoulder, pain in his feet. Yesterday I noticed the area around his eyes getting puffy. Today his whole face and his arms got swollen. He complained that something in his throat felt weird. The doctors decided to hold off on chemo to see what was going on. First they order an X-ray, then followed up with a CT scan. It’s not an infection. It’s cancer. The tumor has grown. Again. Already.

His airway at one point is constricted to 3mm. Some veins draining the blood from his head and arms are being squeezed, which is causing the swelling. They rushed him to start radiation this evening, the staff staying late to do it.

For the first time, Peter was feeling scared and worried today. For good reason. The only shot left is for three uncertain parts to all work perfectly in succession: radiation, chemotherapy targeting the specific mutation driving the growth of the tumor, and bone marrow transplant. The likelihood of getting rid of the disease, in the words of the oncologist, is “exceedingly small.”

Even if we can hit this triple bullseye, Peter can expect to face a lifetime of difficulty. Each piece has its difficulties and its complications, both short and long term. Radiation will most likely cause tremendous pain in his throat. It might be impossible for him to eat for a few weeks. His heart and lungs will also be damaged, as they will also be irradiated. Chemo causes long term side effects of varying types. And a bone marrow transplant will lead to many complications too.

So here we are grieving again for the third time. Each time the chance of healing is smaller. While talking with the oncologist today, I thought, “How much of this can I handle?” The oncologist said, by the way, that he is “kind of angry” because this tumor has not responded at all the way he expected it too. Personally, I just feel sad.

I am a little unsure how much of our struggle and sorrow to share in this kind of forum, but if you are reading it’s likely because you share in our sorrow in some way. We would like you to also share in our hope. We do of course have some hope that the treatments will be effective. That is possible. And we have hope that God might respond to the prayers of so many and heal Peter miraculously. But more than this we have the sure and certain hope of the resurrection. Peter, despite some understandable fear, shares that confidence. While asking for healing, we are preparing Peter for heaven.

Misery, Relief, Repetition

It has been about three weeks since Peter’s last chemo treatment, and two weeks since he got to come home, but still he is feeling the effects.

Last summer he insisted on swimming all the way across a lake in Albania and not getting out 30 feet before the end like I did because it looked like a better place to climb out. And when we were exploring cave churches in a valley in Cappadocia he alone of our kids wanted to go “to the top.” He bent over and marched up the dry landscape to the uppermost level of caves. He has always had a drive to explore and the energy to match it. But this week when he agreed to go for a walk he made it half a block and had to sit down on the curb with his feet in the gutter. “I’m just too tired.” He and I guessed that his hemoglobin was low. It has happened before, but we haven’t seen his energy level lacking so much.

Yesterday he came out of his dietary slump and consumed an extraordinary amount of calories. He even drank a mango smoothie with added protein. “If you drink this I would do a backflip – if I could do one without breaking my neck,” I told him. He thought of something even better. “Can I play Flight until I finish if I drink the smoothie?” he asked. “You can play for 45 minutes.” I told him. He surprised me by finishing the drink, which contained 32 grams of protein from whey and soy, more than he has consumed in a long time. Fist pump.

Then he said tortilla chips and salsa sounded good. But not the Costco salsa, which we have, but one that’s “more watery.” I had just gone to the store and did not buy tortilla chips. I’m happy to try to meet his unpredictable tastes. So I made some homemade tortilla chips. Three corn tortillas sliced into triangles (130 calories each, I noted). Fried in a liberal amount of avocado oil from the big Costco bottle (143 calories per tablespoon). Sprinkled with salt (no calories, but necessary for flavor). He ate all of them. “Do you know you just ate 500 calories?” Wide eyes: “Really?” He asked for more and ate another 500 calories of tortilla chips. Altogether he consumed around 2000 calories yesterday. Double fist pump.

But then he started complaining that one of his ears was ringing. Weird. It was really bugging him. A side effect of one of the chemo treatments? Rebecca called the nurse, who said it was possible. That went away, then the other ear bothered him for a while. Later he had a sharp pain in his shoulder. At night he woke up and wasn’t able to get back to sleep. He couldn’t explain what was wrong; he just felt bad. This morning he had to get up early to get blood drawn for labs. He said his feet hurt. He went and returned without his misery abating, although the pain in his feet did.

It’s rough, this chemo. It’s a healing poison. It kills cancer; that’s the only justification for putting a person through such an ordeal. With all that he has gone through over the past month I feel concerned about what the next round will bring. And all we have been doing is waiting to start another round.

Well, that’s not really true. While we have waited we have been active. For his birthday I took Isaac and some friends to play paintball, ultimate Frisbee, and out to pizza. Peter played with friends that day, then joined us for pizza – well, not for pizza but at the restaurant. He wasn’t going to come, but after throwing up he felt so much better he wanted to come. On Sunday I preached at Gateway Church, updating the people on the churches they sent me to plant, share about our situation, and preach the good news of Jesus. Rebecca and the kids came to one of the services. Then Rebecca’s family came for a visit at our house. Then we had dinner at the house of some friends. Peter went along to ultimate Frisbee and sat on the sidelines with me on Tuesday.

This afternoon we got a call about Peter’s blood counts form the morning’s labs. Neutrophils and platelets are good to start chemo, but his hemoglobin is low. The nurse said that was surely what was causing his malaise. She suggested we bring him in for a transfusion tonight and they will begin chemo tomorrow. We packed up in a hurry. The drive over to San Francisco was 140 minutes of misery for Peter. I prayed as we drove, suspecting that once we got to the hospital he would feel much better. As soon as he was out of the car and in a bed he was calm. I wish he didn’t have to go through any of this. But if he learns to endure this he will become tough and strong. We all are growing in perseverance, but he will most of all. I hope that this experience today is a microcosm of the whole: misery will lead eventually to relief. We know that in the long run this will indeed happen, as the sorrows of this world are swallowed up in the joys of the next world.

Money and Mail

Several people have asked us about money and mail. Do you need financial help? How can we send mail? Did Peter get the mail I sent him in the hospital?

Oh, and I’ll give a quick update about how Peter is doing. People ask about that too, of course.

A testimony about finances first. A few years ago we passed on a large amount of money that had been given to us when we bought our house. “Don’t pay it back; pay it forward,” they said. So we did. That same year, though, the transmission went out on our van. It cost over $3000 to replace. And the first manifestations of Rebecca’s mastocytosis led to hefty medical bills. Over $5000 I think. To top it off, we found out that our taxes had been done incorrectly for the last several years (what was I paying a tax preparer for?!). We owed something like $7000. Huge expenses all piled on top of one another. And yet at the end of the year we had as much in our bank account as we had at the beginning. I’m not sure how. God provides.

We are confident that God will provide for us in this time too. So far we have the potential of some pretty outrageous bills, but mostly it’s just our insurance company trying to bluff their way out of paying. Peter’s oncologist had to spend 40 minutes haggling with someone from our insurance company to get them to approve a PET scan. But so far the insurance has covered most costs. So we only have the deductible and co-insurance costs, plus the peripherals of some extra travel and food costs, but those are within our means.

But I am no longer working. I had already announced I was leaving when Peter was diagnosed, so eventually the church needed to move on with its search for a new pastor, and I needed the availability to be with my family. I still need a paycheck, though, since our transition from here to Belgium has become protracted and complicated. I am remaining on staff at our mother church (Gateway in Merced, CA), but on family medical leave, and relying on donations to maintain my salary. So yes, you can help us financially by donating towards my salary. You can send a check with “Nelson” on the memo line to:

Gateway Church

353 E. Donna Dr

Merced, CA 95340

You can also give online at Gateway’s website http://gatewaymerced.org/give

It may be many months before we can make the move to Belgium, so we do need some long term support. Again, we are not worried about our finances. God has always provided.

If you are inclined to help, we will gratefully receive. But can I ask that you consider giving an equal or greater amount to the truly poor in the world? One of my favorite organizations to support is Partners International. They provide clean water, education, medicine, etc through local ministries in the least Christian (and some of the poorest) parts of the world. We are blessed to have a network of generous people with the means to give. Many people in the world do not have that. Think of them. Please don’t think that we are not grateful for the help we have received. We are overwhelmed with gratitude. We never expected to be the recipients of such love. We are grateful that our needs are being met and at the same time mindful of the needs of others. Peter often prays for children in the world who don’t have enough food, or are sick and don’t have medical care.

If for some reason you wish to send us something directly, you can do that too. Our home address is

582 Harvest Park Dr

Turlock, CA 95380

 

Mail

This brings me to the next point, the mail. Peter loves it. Keep it coming. Some of the doctors have commented on the huge amount of mail Peter receives. People have sent very thoughtful letters, packages, even artwork. Thank you! It makes him happy to get it and he is encouraged to know how many people are praying for him.

He’s not in the hospital at the moment, so if you wish to send anything now, send it to our home address below (but it’s at the hospital when the encouragement is really appreciated). When Peter is back with a new room number, I’ll let you know what it is. I do get the impression that mail sent to the hospital takes a little longer to make its way through the system and get to Peter’s room, but he does get it eventually. And if he gets out before it’s delivered they will forward it to our home.

 

Update

Finally, how is Peter?

  • Cheerful, as he usually is when not on chemo.
  • Active, though not like pre-cancer. We’re hoping he gains a little weight, especially muscle, before heading back, so activity is important. A UNICEF Kid Power fitness tracker (like a fitbit) is keeping him motivated to stay active, plus when he earns enough points a food packet is sent to a malnourished child, something he is excited about. He agrees to go out for a walk with me about half the time I suggest it.
  • Eating moderately well; his diet has expanded somewhat, but his staples are still avocado tacos (corn tortilla, avocado slices, lime juice and salt – try it!), and dried mangoes (he’s still convinced it’s boosting his neutrophils). A little cottage cheese is providing some protein.
  • Playful. He went with some friends and part of the family to go fishing on Monday. He had a great time. Last night I was playing a favorite game of my two younger kids. It’s called “Get off my couch” and consists of me lifting them off one couch and depositing them on the love seat. Still holding his book, Peter came and laid down on the couch with a smile, knowing he’s a bit old for this game. I noticed with sadness how easy it was to lift him off the couch.
  • Waiting. His blood counts are still low, so we are all waiting for them to come up. When they do, he’ll head back in. Thankfully, since he recovered so quickly this time, they think his post-chemo recovery this time can take place at the Family House a few blocks from the hospital. It’s a much more comfortable place to be.
  • Worshipful. Our first night back home we had a worship dance party for our family worship time. It was a sweet time dancing and singing to Matt Redman and Kirk Franklin. Peter was also happy to rack up some extra steps taken on his fitness tracker.

The worship and dance party reminds me I have something I want to write about suffering and joy. I find it’s quite possible to experience both at once, but in the end joy will swallow up the sorrow. I’ll write more on that soon I think.

What the Doctors Can’t Explain

When the doctors can’t explain something it can either be bad (“We don’t know why the tumor didn’t respond to treatments”) or it can be good (“We don’t know why his neutrophils jumped up so dramatically”). We have now heard both.

We learned early on that neutrophils are the type of white blood cell that fight infections. Neutrophils are the main ingredient in pus, for instance. Cancer cells are the intended target of chemotherapy, but the drugs affect all fast-growing cells, so chemo patients lose their hair. And another more important effect that you cannot see: chemo attacks another fast-growing cell, bone marrow, which stops producing new blood cells. So neutrophils, along with platelets (important for blood clotting), and hemoglobin (the red blood cells that carry oxygen) plummet after chemo. They can give transfusions of hemoglobin and platelets, and they often do for Peter, but for neutrophils we just have to wait for them to come up on their own.

After the five days in a row of chemo we expected to wait three weeks or so for his blood counts to come up. Then Peter would go home for a short break before a PET scan to check for tumor activity and then begin round two. The X-ray during the week gave a snapshot of a shrinking tumor (half a Hallelujah) and then on Friday we got another surprise.

A normal range of neutrophils is 1.5 – 8.5 x 109 per liter of blood. 109 means adding nine zeros, so 1.5-8.5 billion neutrophils per liter of blood. There are a lot of cells in a body! From Thursday to Friday Peter’s neutrophils had gone from zero to .42 billion. For some reason the doctors all refer to this as 420. I guess they put the decimal in a different place. Anyway, the attending doctor who visits Peter every morning on rounds was literally incredulous: he did not believe the results. He guessed it was a miscount. Although Peter had received a medication to increase the production of white blood cells, such skyrocketing numbers was a complete shock. If it was a miscount we would find out the next day, Saturday.

On Friday night one of the MD fellows spent the evening socializing with us and our four kids. Her family is from India and we happened to be eating Indian food prepared by my co-pastor and his wife that night. The doctor accepted a samosa, rice, dall, and vegetable curry and joined us for at least an hour and a half until her pager finally went off. Among other topics, she talked with Peter about his theory that it was the copious quantity of dried mango that he had eaten (a great way to get him to consume calories) that had spurred his body’s production of neutrophils. She had mentioned earlier that they had never seen a patient receive so much mail. Thanks everyone! It really means a lot to Peter to open up so many cards and hear how many people ae praying for him. The doctor said at the end of the night that her other dinner plans had fallen through, but she ended up with a very pleasant evening with our family. We felt the same. Peter’s hospital room has sometimes been a place of sober misery. That night it was a place of friendship and laughter.

Saturday’s numbers were even higher, .66 or 660. 500 is the magic number for being discharged, so they sent Peter home. Excitement rippled through the whole family. Going home for a break a full two weeks earlier than expected! Hallelujah (three-quarters this time)! At the same time the drag of disease, the hospital, and all the accompanying worries and complications was evident in our manner through the afternoon. I find myself more snappy than usual.

Because our older son was registered for a chess tournament in the Bay area for Sunday we stayed at the Family House for a night. (Thank God for the Family House. Paying for a hotel in San Francisco would be ridiculously expensive). A few weeks ago Rebecca ran into a woman we knew from our little church in Los Angeles. We had last seen her twelve years ago. One of her young daughters is being treated for cancer here too. She and Rebecca were both happy to find a friend to share their struggles with. And her older daughter and Peter quickly became friends. Peter was happy to see his friend again at the Family House. She came along when I took Peter and his younger siblings to a great little park in the neighborhood.

We have watched Peter’s body weaken through chemo and inactivity. Physical therapy and a Unicef Kid Power band (like a fitbit) have kept Peter motivated to stay active, but he remains extremely thin, weak, and unstable. He can’t walk like normal. Part of that is an effect of some of the chemo, which affects the longer nerves like those that run down the shins. He literally cannot stand on his heels and raise his toes off the ground. Peter’s physical condition was evident on the way out of the hospital. Rushing to get the younger kids from the playroom, Peter took a hard fall. Somehow his knee started bleeding.

Rather than avoid physical activity, it is important for him to maintain and build muscle and balance. That afternoon we walked (slowly) to the park, gladly holding hands for stability while his younger siblings and his friend ran on ahead. In the hospital they offer physical therapy, art therapy, music therapy, aroma therapy – I might be missing more. The music therapist and I joked that they should offer math therapy, but then more people would require therapy after math. “That’s funny, Peter,” Rebeca said to the stoic Peter, but he wasn’t in a mood to laugh those days. That hour at the park Peter did something far better than any kind of therapy a person could offer: he played.

This afternoon we will head home. We are glad for the break, but our hearts are still full of worry. (What does a visit from the palliative care doctors mean? How will all the complications of a bone marrow transplant affect Peter the rest of his life? How long will that life be?) When his platelets are up Peter will be back for the next round of chemo, probably on Wednesday or Friday. So for the next few days we will all engage in that life-giving, God-honoring activity – we will play.

Half a Hallelujah

Yesterday I asked the oncologist when they would do the X-ray that he had mentioned a couple weeks ago, before starting this new cycle of chemo. X-rays would give us a glimpse of whether the treatment was effectively shrinking the tumor. When I asked, though, he hedged a little and said it wasn’t that important. “It might be the same size, but that’s not a concern because it can take some time for the tumor to shrink. Or it could even be slightly larger because tumor cells can swell up before they die.” So whatever an X-ray showed it wouldn’t change the course of treatment at all. “I am curious,” he added, “to see if the tumor is getting smaller. That would be nice to see. What do you think Peter? What would you like?” “X-ray,” Peter said.

This morning they took Peter downstairs to radiology. Around noon we were standing in the hall talking to the nurse practitioner who coordinates a lot of Peter’s care when the oncologist appeared around the corner and motioned for us to come to his office. He added a thumbs up and we stepped in to look at his computer screen. On the screen were two images. He directed us first to the one on the right. He pointed out Peter’s ribs and heart. His port, which was surgically implanted in his chest for accessing as needed for chemotherapy, IV fluids, and other medications was the clearest thing visible. “This,” he said pointing, “is the abnormal tissue.” Ghostly white in the X-ray, it was shaped like a thick gourd placed upright in his chest. That X-ray was two weeks old. The new one was on the left. The difference was obvious. He drew a quick line across the tumor in both pictures to get a rough calculation. In the old r-Ray the tumor measured 11.6cm (4.6 in) across. In the new one it was 8.6cm (3.4 inches). A significant change. The top of the gourd shape especially was much more slender.

We all agreed it was encouraging. But how much do we celebrate? My brother said he wasn’t sure whether to celebrate or be cautious. Precisely. We went through shock, fear, and relief so fast during the diagnosis and first days of treatment when the scans showed a 65% reduction in the size of the tumor. Then our hearts were crushed with the results of the scan a couple months later. We are certainly happy that the tumor is shrinking, but there’s still so far to go and so much danger along the way. The phrase “cautiously optimistic” has never meant much to me, but in this case it fits. We are cautiously celebrating.  Half a hallelujah. Or maybe a full hallelujah is fine. The Psalms alternate between praise, lament, and thanksgiving quite frequently, sometimes in the same Psalm. It’s fine if our prayers do the same.