Update 8

Update on Nate.8

Hello everyone,

We are not going to NYC today but will go up there on Tuesday. Nate made it through his surgery on Tuesday and was in a bit of pain as expected but slept fairly well last night. Today he had his dialysis, and then was released. He was able to get rid of another 6 pounds of fluid and looks a little thinner, but not by much. Now we begin his out-patient dialysis on MWF. He is now taking a lot of medicines, some to counter the effects of others… maybe many of you who have been through similar treatments know the medicine game… it would be so nice not to have to be on so many medicines but that is what is going on now. He still has quite a bit of extra weight and it would be great to see that be reduced as well. It is so good to have him home and we are so thankful not to be driving back and forth to the hospital and dealing with various hospital dramas. Many of you have offered to help out if we have any needs… as we get into a routine for dialysis, we may be calling upon some of you for transportation one way or the other.

As for how Nate is feeling these days. He has shared that he is thinking about how his days at school will go… getting around to classes, carrying all his pills with him and taking them at the right times, packing his lunch and being mindful of what he can eat and when,  how his energy level will be, and just his overall cognitive performance before and after dialysis. We will all have to adjust to a “new normal”, it is just that the majority of the adjustments will be on Nate.

Well, that’s about it for now… the link at the bottom of this page contains all of the updates prior to this one. Thanks for your prayers as we enter this new phase of Nate’s treatments. We cherish you emails and texts to us letting us know of your thoughts and prayers. God is good and has provided for us in many ways this past week. Hope you have likewise experienced God’s presence in new ways as you have spoken to God on our behalf. Thanks again, and keep up the faith.

Shalom,

John

Update 7

Update on Nate.7

Greetings all,

Yesterday (Monday) was a day full of information and clarification of things. I hope I can remember them all to convey to you. Where to begin?

First

It looks like we will be going to New York City, Presbyterian Hospital, and talk to the #1 specialist in the nation who is familiar with conditions like Nathaniel’s (based upon our nephrologists suggestion). His name is Gerald Appel if you want to look him up. We are not sure of the time, but we think it will be some time this Thursday.

Second

This afternoon, Nathaniel will go into surgery for a peritoneal dialysis catheter to be attached to his abdomen so that he can more easily do dialysis nightly at home rather than for 3.5 hours three times a week at a dialysis center. The procedure will take about an hour. The catheter is about a 6-inch tube sticking out Nate’s abdomen that will eventually be attached to a machine each night.  This catheter allows for a phenomenal process that I don’t fully understand that involves pumping a fluid in and out of his abdominal cavity that interacts with capillaries to draw out impurities in his blood… who thinks up these things?! The procedure today takes a couple of weeks to heal and to make sure infection does not occur. Possible infection is the biggest concern so pray that things heal well.

Third

Nate is done with his plasma treatments, one of two types of treatments recommended for his rare disorder. This was more of an inconvenience than a pain. It involved a process like dialysis and made for a long day yesterday for him. The other treatment, the low dose of chemo will continue at about 2-week intervals.

Fourth

Our nephrologist, Dr. Julie Rothman, is a fairly direct, straight-shooting physician (which both I and Nathaniel like) who says that the treatment Nate is enduring is to create the best possible outcome, although it is a longshot that the kidneys will return to fully functioning. Nonetheless, she wants to do all in her power to give Nate the chance. If all goes well, I think she anticipates releasing Nate from the hospital sometime tomorrow after his dialysis. He will then continue dialysis three times a week, MWF, until his catheter heals. Once that heals, he will do dialysis at home at night while he sleeps. Nate will live with this procedure until the doctor deems it right for a transplant. The target date for that, and the placement on a list, has not been discussed at this time. Nate should be able to experience a fairly normal life within limits, although the full implications of this will work itself out in the days and weeks ahead.

Fifth

Many of you have relayed to me your prayer experiences during our “Urinate for Nate” campaign! I must say it provides for some interesting and dare I say rather intimate stories. Nonetheless, I want you to know it has been a testimony to nurses and doctors at the hospital to know of the novel way to remind people to pray for Nate and to thank God for his goodness. It has inspired other such prayer ideas such as “Pee and pray” and “Lord, make a polder of this kidney kid” (For you non-Netherlanders, a polder is a piece of land that remains when all the water has been drained off of it). I wish I could say its effect opened floodgates, but it has not happened yet. So don’t stop… either… (praying or urinating) J…

Sixth

I want to continue to thank you all for your support in prayer and other ways. I can’t explain the strength and endurance we have experienced any other way than by God’s presence and grace afforded through your prayers. I am truly awed and humbled. This update list has swelled from my initial list of about 48 to well over 100 now, and to that I just repeat, to God be the glory. Feel free to continue to pass this on or request that I add people to my direct list. Thanks again.

Shalom,

John 

Update 6

Update on Nate.6

Hello Everyone!

Sunday was another uneventful day, but tomorrow will be a full day for Nate. Today he mostly relaxed and had his 1.5 hour-long plasma “dialysis”. He is still retaining water which means basically his kidneys have not started putting out yet, but we remain hopeful. I suggested in my adult Sunday School class today that we start a new campaign, “Urinate for Nate”. This idea came to me early this morning, and I don’t necessarily think it was “inspired by God” but it does represent a basic idea that came to me recently. Pardon my discussion of such “base” functions, but we are talking about kidneys, you know. I have been thinking that our bodies and their automatic functioning in so many ways is nothing short of amazing and rather miraculous in their own right, from heartbeats and breathing, to digestion and yes, “elimination”. If, for a while, whenever we eliminate, we say a quick prayer, agreeing with God in the work He is doing in Nate, then who knows what we might see as a result. Truly I do not know God’s plans for Nate, but I sure would love to get a call from him saying he “peed a river”, and even if it was nothing more than a trickling stream, it would seem like a victory. Even if we do nothing more than just thank God for the functioning of our own bodies at such a regular interval (not suggesting that none of us already do this), it would delight God. Who knows, I might even have some bumper stickers or t-shirts made… we could start a new movement (I know, poor choice of words). Anyway, such a “slogan” may be no more than a caution to be wary of thoughts coming to you early in the morning, but hope you can appreciate my intent. It would be so great for Nate to be able to get rid of some of his 30+ pounds of water weight naturally!

Our doctor has not given us much in the way of expectations for these new treatments, nor has she given us much to expect in this coming week, so we are trying to be patient. We are thinking about getting a second opinion if it is deemed appropriate, and we are praying for wisdom in this area. There are concerns about Nate’s status as a student and if spring semester, which starts in a week, will be possible. And then there is the question of a transplant, which his doctor today said is best not to be thinking about quite yet. Anyway, with so much up in the air, it is great to know we are grounded in God’s love and care. What more can we say, then? If God is for us, who (or what) can be against us?

It was so wonderful to see many of you at church today and to continue to get encouragement from you all… what a family we have! Keep up the faith!

Shalom,

John                            

Update 5

Update on Nate.5

Greetings everyone,

(The Update)

Nate has had an uneventful day, and since he had a big day yesterday with three treatments, this has been nice. Starting yesterday, he is now undergoing treatment for this special rare kidney disease which involves a procedure like dialysis only with something like plasma, and he had a chemo treatment which lowers his immune system. Hence, we have to be especially carefully for the next week as his immune system is low… so no visits by anyone who is sick/has a cold, or who hasn’t had a flu shot. Also, he had his normal dialysis. The nephrologist is hoping that the treatments will restore functioning to the kidneys but the fact of the matter is, there is no guarantee and it would be rather remarkable if full functioning returned. Nevertheless, this has given us hope, but whether it “works” or not, we know that we can’t be in any better care than in the Lord’s hands. With the kidneys not functioning and with large doses of steroids, Nate has gained over thirty pounds this week. The photo at the bottom of this email gives you an idea how his looks have been transformed. Who do you think he looks like now? He feels like the Michelin Tire Man! Most all of it is water weight which we hope will be relieved in a few days. We are all in pretty good spirits, Katy has spent all day at home (which she has enjoyed), and I have been with Nate in the hospital all day. He will receive another dose of chemo in about 12 days, and will continue the plasma therapy for at least two more days. Dialysis will go on Monday, Wednesday, Friday. That’s all we know for now… it has been a day by day, step by step journey with no real idea long term. It has been quite a challenge to just live day by day with this, but it could be worse – at least we have an idea of what we are up against. I can’t express how grateful we are for your thoughts and prayers and we know God has been and will continue to be faithful. Feel free to text, email, call, and come by (if you are healthy) to Harrisburg Hospital rm 1011.

Shalom,

John

(Reflection)

Well, it has been a week since Nathaniel was admitted to the hospital, and there has been a lot of time spent just sitting and pondering how quickly life situations can change. If you will indulge me a bit, I thought I would share some things I have been reflecting on this past week in the midst of this roller coaster ride of ups and downs.

“…but this happened so that the works of God might be displayed in him…”

It has been almost 9 months since I spoke at the International Christian Fellowship in Wageningen, Netherlands (on my sabbatical) on John 9, the story of Jesus and the man born blind. I have been thinking a lot about this in our present context. I am reminded that it was Christ’s disciples, not the Sadducees and Pharisees that asked Jesus the question, “why was this man born blind… was it his parents or him that sinned?” Many times we who follow Him ask the same sorts of questions, and despite the bad theology that Christ could have corrected, He instead just answered plainly “that the works of God might be displayed”. I have tried to resist asking the questions and tried more to make my focus on what God is trying to do in this situation and I am convinced that at least in part it has to do more with His glory than our pain and inconvenience. Furthermore, the main event of this story (the healing) accounts for very little of the whole story as the healing seemed to trigger a whole incident involving antagonism, argument, and disbelief.

The healing itself was a bit unique in that Christ made some mud with some spit in the dirt and put it on the man’s eyes… I am surprised that none of the more enterprising disciples didn’t pick up some of the dirt and start selling it as “magic dust” (just add water). In reality, everyone must have known that it really wasn’t the mud, but Jesus who was behind the healing, even though the blind man mentioned the mud a couple more times. In a similar thought, as we seek the best help for Nathaniel, we will not trust in the magic dust of all the technical and medicinal treatments afforded him, although we won’t reject them, but we will realize who is behind any improvements we see, and give glory to God.

The blind-man-healed almost immediately confronted a barrage of nay-sayers the moment he returned to the scene, people challenging the source of his healing, as well as whether there was any healing at all. The locals were divided as well as the religious folks… even his parents could not have been relied upon for a testimony. According to my rough perusal of the gospel of John, this is the longest passage in the gospel that does not contain any words of Christ (no red letters), describing the plight of this poor man with new-found vision. In contrast, we are not going to wait until the end of the story to give God glory. We have seen His glory in every one of you who has prayed, sent well-wishes, provided food and snacks, shoveled our driveway, come up to visit, sent cards and flowers, made us laugh, made us cry, taken care of our dog, and continue to connect with us through the Holy Spirit. It is like each one of these acts is a little mirror reflecting His glory until our whole hospital room has been filled with light. You all have lightened our load through the power of the Holy Spirit and we greatly appreciate it. What a joy it has been to be stopped across campus or in a hallway and to be told of your prayers and thoughts… and even more so, to sense God’s presence with us constantly through this journey. We hope you have likewise sensed His presence and can rejoice with us in God’s work. To God be the glory.

Update 4

Update on Nate.4

This will be a quick one… first, in Nate’s words,

1- 23-14 Thursday

Dr. Rothman (my nephrologist) came in this morning to tell us what was going on and why she requested for me to come back to the hospital. Dr. Rothman got my biopsy results back and it is more serious than we thought. The biopsy showed that some of my kidneys are completely unrecoverable but they are going to be working hard to preserve what I have left. She explained that I have a very rare form of IGA Nephology called Rapidly Progressive Glomerulonephritis (RPGN). There are only a handful of cases out there of RPGN and there is not much research for this type of aggressive kidney disease. They do have a couple of procedures that could help including chemo-p-plasma (chemo therapy) and plasmaphoresis (plasma transplant). My doctor has been talking with the top nephrologist in our country and consulting with them to find the best possible solutions. They want to keep me for the next few days to monitor me and see how I react to the daily plasmaphoresis, 3 times a week dialysis, and 1-2 low doses of chemo.

Since then, Nate went to the hospital for treatments… he had an allergic reaction to the plasma treatment so they stopped it mid-stream… that was Thursday night… today they will give him his schedule dialysis and then try the chemo…

This has been quite a roller coaster ride these past few days… we are a bit tired but by no means defeated! We are buoyed by God’s constant presence and your prayers on our behalf. I am reminded of the incredible nature of our physical body to fight off diseases and marvel at how the body is designed to attack foreign substances in the body and note that this is exactly what we are experiencing as well as part of the body of Christ… when the word first went out, the Body rallied and focused prayers (antibodies) on the critical site (my son) and things began to happen… maybe not exactly as we prayed but exactly as God has intended… we trust in the Great Physician in this case, who is the Great Physician and so much more, as we have experienced…

Thanks so much for your prayers and continued “fighting” on our behalf… keep up the faith… God is good and has sustained us in so many ways…

Shalom,

John

Update 3

Update on Nate.3

Hello everyone,

I am happy to say the hospital portion of our journey is done for now as Nate came home around dinner time. There will be many adjustments in the coming days regarding Nate’s diet and daily schedule but we are happy to have him home beginning this new phase of his life. Thanks for your prayers and encouragement as we have seen God’s hand in so many ways these past few days. Nate won over the hearts of all the staff, nurses, aides and doctors alike with his sense of humor and positive attitude. I imagine they get enough of other types of patients that Nate was a refreshing change. That sentiment was shared with us from several of the hospital staff.

As for his day today, his creatine levels unfortunately were high this morning, (9.5) but he did not have his dialysis yesterday because of the biopsy, so today was more or less a picture of what happens when he doesn’t get his dialysis. This was a bit disappointing but it was moderated by the word from his doctor saying she thought it was ok for him to go home after his dialysis. He is still getting large doses of steroids which will keep him rather swollen and will cause him to gain weight, but this is part of the cost of maintaining kidney function. Such adjustments will test us and Nate, but what better way to see God’s faithfulness?

The biopsy results will not be made known for another day or two, so there will probably be at least one more update given those results. For now, it appears Nate will get dialysis every other day, and continue with a boatload of medications. We really appreciate your prayers  for us and especially Nate as he begins this life changing experience.

John

Update 2

Update on Nate.2

Greetings all,

This is my second update on Nathaniel’s kidney ordeal (let me know if you didn’t get his first one). It has been a good couple of days. The nephrologist says that things are getting better each day. How does she know… well, here’s a little medical jargon…  Nathaniel came in on Saturday with a creatine level over 15. According to a couple of the nurses at the hospital, that’s a new record… not having seen it higher than around 9. The kidney association says that above 10 represents extreme kidney failure and leads to death.  Creatine is some kind of garbage that the kidneys take out of the blood when they work properly. Most “normal” people have a level of around .6 - 1.2. That was one reason why the nephrologist said the kidneys were shot because the levels were so high when Nate came in.  Well, Monday Nate’s level was at 8.53 and today it was at 6.94. Although still not good, at least it is going in the right direction and an indication that the kidneys are working somewhat!

Along with that, Nate came in with tremendous pain, hiccupping and vomiting most of his first night. Each day his pain subsides, and today, even after his biopsy, he says he is not experiencing any pain and had a great night’s sleep last night. He does have swollen feet and a swollen face (moon face they call it) due to his steroids but other than that things are doing fine in the pain department.

We have had some visitors come by and that has lifted our spirits and as one visitor said on facebook concerning Nate, “through it all, this kid (Nate) is still the life of the party”! We have shared lots of good laughs with all who have come by, and even a nurse said that it sounded like we were having so much fun here that if she got bored she would come back by just for some laughs. I got a rather unusual gift at a White Elephant gift exchange and brought it to the hospital. Word has gotten around on the floor about it, nurses have seen it and even the nephrologist made a special trip to Nate’s room looking for it, having heard from another doctor that saw Nate and got a good laugh from it. She says she has to get one. What was the special gift… well, have you seen Despicable Me? … it was a Flatulence Sound Effect Apparatus (better known as a Fart Gun)… any way, it has been a source of quite a few laughs, both coming from Nate’s bathroom and from trigger pullers in his room!

As for the biopsy, we will not hear results at least until Thursday. Nate did not have dialysis today but will have it tomorrow, so we assume he will be here at least another day and night… The nephrologist has not given us much more than that his kidneys are not good and we should expect that there will ultimately be a need for a replacement, but it would be nice if it was later than sooner… of course, we would accept Godly intervention on any level and I am sure we have already seen Him at work in so many ways… from the response of “the body” with meals and ice cream treats, to keeping Nate through his first day at the hospital where they were surprised he walked in under his own power.

Well, that is the latest. We continue to cherish your prayers and we know that God is making his presence known to us in many ways. We look forward to being out of the hospital and at home. We also want to trust that we will see more of what God wants us to take from this journey. God is faithful and good!

Shalom,

John

Update 1

Update on Nate.1

Greetings,

This is an email update to those I have easy access to email, so please feel free to pass this on to others that you may think would like an update. Many of you may not know but our son, Nathaniel, experienced a renal (kidney) failure on Friday and was admitted through the emergency room to Harrisburg Hospital (Pinnacle Health) on Saturday. Nathaniel has been monitored for several years for nephritis, a kidney disease, but his last check up this summer presented a spike in some numbers but not a big concern and he went on a very small dose of a medication. Two weeks ago he had a bad cold which caused his kidneys to flare up and yet he came through the cold and we thought things were back to normal. Apparently things were not, for although he didn’t have a cold, he was feeling more and more pain in his lower back and experiencing more and more discomfort during sleep and waking times. Then, last Friday, when he got up in the morning, his face, abdomen, and back were severely swollen and we immediately took him to our GP doctor. She evaluated him and determined it was a reaction to the drug Nate was taking and told him to go off the medication and put him on Prednisone… Saturday morning we got an emergency call from the doctor telling us to take Nathaniel to the emergency room immediately for his blood test from the day before came back indicating renal failure. He was placed on dialysis immediately at the hospital.

He has now had two more dialyses. Disappointment came on Sunday when we talked to Nathaniel’s kidney doctor and she stated rather directly that Nate’s kidneys were “shot” and were beyond any hope of functioning. She was to get him an interview with the person responsible for putting people on transplant list in the coming days. Also, he was to have surgery on Monday to get a catheter in his stomach so that he could do dialysis at home… That was Sunday. Obviously we are praying and trusting God to work His will through all of this, and praying that He can truly show us His glory in this all.  Furthermore, friends from church, our Authentic Living class at church, Dutch students and faculty from the University I was at this past Spring in the Netherlands (I have been helping host them at Messiah over J-term), and many of Nate’s friends have been praying since hearing of Nate’s situation.

Now it is Monday, MLK day, and I went into Harrisburg to volunteer in the city with Messiah College students and Dutch students. I was helping to drive a van and was looking forward to participating in the service projects for the day. Katy has been sleeping on a fold-out bed in Nate’s room. It was so good she was there on Saturday night as Nate had been throwing up most of the night. Sunday night was much better, an although both Nate and Katy were restless, it was not due to pain or vomiting.

The good news came this morning as Nate’s kidney specialist announced that apparently his kidneys were working a little bit and that not all was lost yet. They have hit him hard with steroids today to hopefully “jump start” more kidney function, and although I am optimistic, I know better than to get my hopes up that all will be well… unless there is even greater External intervention. They have delayed the catheter surgery and will conduct a biopsy tomorrow to determine the nature of the kidneys.

This is quite an unexpected journey we are on and we cherish your prayers. Overall, God IS good… a theme we have experienced over and over again, so we have no fear because of His faithfulness and steadfast character.  We hope you will join us in looking to God for what He wants to show us all… thanks so much again for your concern and connections with us.  Please forgive if you are getting this second hand through a forwarded email… we appreciate hearing from you and will keep you updated as we can…

Shalom,

Brother, Uncle, Friend, John