Update 15

The attachment contains the most recent update on Nate’s Kidney Journey! It is a bit long, but, after all, it has been over three months! Contained in the update is the encouraging news that a transplant is scheduled for October 14th as a live donor has been identified and accepted by the transplant team!

Related to the impending transplant and the multiple things that go on logistically, Nathaniel’s social worker at Johns Hopkins gave us information on a charity that serves on behalf of transplant patients and their families and recommended that we participate because of all the added expenses in transportation, accommodations, and other expenses not covered by insurance. This charity requires that there be two people, a designated fund manager and treasurer/bookkeeper to handle the account. These people should not be related to the patient. We have since found people to fill these two positions! The charity is well established and has all the information necessary to manage, and no IRS information or filings are necessary on the part of the manager or treasurer. If any of you are willing to consider this, we would love to talk to you further about helping us in this way. Thanks.

Shalom,

John

I still don’t catch everyone interested in Nate’s journey in this email, so feel free to pass this on to any you know who may be interested. Thanks…

Greetings family and friends of Nate,

It has been over three months since our last long update, and I wish I could say no news was good news, nevertheless, we have seen God’s hand at work. This time, I will include the highlights (and lowlights so to speak) of Nate’s “Summer Vacation”. Many of you may have had a chance to go to an amusement park this summer and ride on an exciting roller coaster or two... well, amusement parks have nothing on the summer that Nate has had, beginning during the week of finals, just as the summer was about to begin. In our last big update, I indicated Nate had some respiratory problems, well it turned out that he did have pneumonia and consequently missed all of his finals. Thankfully a few antibiotics and a week later, Nate was able to complete all his finals and be done with a rather challenging semester at Messiah. Also, thankfully, there are not many times required when someone has to deal with kidney failure on top of a full load of college courses...

Not long after finishing his finals, Nate had a urinary tract infection which kept the antibiotics flowing. As a result of that, and not sleeping well and not getting the best nutrition due to nausea related to drugs and other issues, June was not a great month. The final distressing “event” in June was a determination by our family doctor that Nate had an unusual heart issue that he recommended a cardiologist attend to, which led to a heart catheterization on June 20th. This ended up being a rather “routine” procedure to investigate the nature of Nate’s heart which came out “crystal clear” on all counts, which led the cardiologist and the transplant team to determine the heart issue was kidney related and hopefully remedied when Nate gets a “new” used kidney. The procedure was fairly quick and gave us a few laughs since Nate was conscious during the procedure but really doped up with some “Happy Juice” that didn’t wear off for a while which kept us entertained back in his room. He kept saying everything would be OK since he was NATHANIEL IVAN BECHTOLD, at one time remarking that he wanted to swim in jello! We were hoping to get the catheterization taken care of as soon as possible because after graduation and my May – term Cross-cultural course, Nate and I planned to take a road trip to see friends and family out Colorado way. His procedure was on a Friday, and the next Monday we were on our way to Colorado in the CRV (the cardiologist did not recommend the trip so close to the procedure, but by Sunday evening we could tell things were healing nicely and the trip need not be delayed).

Our trip to Colorado was refreshing, invigorating and uneventful health-wise and allowed us to visit many family and friends who have been praying for Nate. We took Nate’s dialysis machine with us and had extra dialysis fluid shipped out to my sister Debbie’s house in Boulder, CO, so we could “hook up” every night on the road wherever we were staying, and have supplies waiting for us when we spent time in Colorado. We had many great “reunions” in Indiana, Kansas, Colorado and Ohio, that made our trip especially enjoyable and rich in fellowship.

We visited Nate’s friend from home, Hunter Spivey, who was working in Denver for the Honest Tea company as an intern and we had a great time with him at Winter Park and the alpine slide there as well as taking dinner at Casa Bonita!  Hiking in the mountains, playing Frisbee, relaxing while watching the World Cup, having cook-outs, and riding ATV’s were just a few of the things that we did with friends and family that made our time away so special. Outside of being a bit winded while hiking in the mountains, Nate’s activity level and health were great! Thanks to the use of Hannah’s smart phone we even kept up with the world cup while on the road!

On our way back from Colorado we got exciting news from Johns Hopkins Hospital that they had a live match for a kidney for Nathaniel and that progress has been made to get a transplant sometime at the end of July or the first of August! That obviously was great news, but since that phone call we have learned more and know that as far as Nathaniel’s tests, paperwork, health and transplant team are concerned, he is ready to go. All that was needed was the donor team to meet with the donor for his interview and then to determine a date for the surgery. We now have confirmed that his transplant will take place at Johns Hopkins on Tuesday, October 14th given all things go well for the next month. This is all quite amazing given that our journey essentially began just over 7 months ago!

We got back from Colorado July 3rd and were hoping that July
would be a continuation of good health and good times.
 Although neither the Dutch, nor Costa Rica made it all the way
to the finals in the World Cup, it was a good showing from both
and a great championship. The rest of July was fairly
uneventful until the wedding of one of Nate’s best friends,
 Josiah Lindquist, in which he was able to participate. In the
initial plans for this event, it was anticipated that Nate would
be overseas with an International Business course that would
have prevented him from being at the wedding, so this was a
great blessing in spite of Nate’s renal failure that he was able to
be a part of Josiah and Kimberly’s wedding! Just after the wedding Nate began to complain of some nausea and began throwing up frequently for the next few days after the week-end of the wedding. We saw his nephrologist on Thursday of that week, and although she did not know what was the cause or offer any remedy, after the visit, Nate began to feel better. That was the end of July.

August, however, has been another story. The first two weeks, again, were rather uneventful outside of another short-lived urinary tract infection. We had heard again from Johns Hopkins that the transplant would occur now at the end of August or first of October. In anticipation of greater restrictions and greater care the closer to that date, Nate decided he wanted to take one more short road trip up to Brooklyn to see his girlfriend Kari (rhymes with “sorry”). He was feeling pretty good and we had just purchase a new used car, and a road trip seemed in order. Nate had a good week-end with Kari and her family but as the new week started, Nate’s nausea and headaches began to return again. Sparing lots of details, Nate was hospitalized in the Lutheran Hospital in Brooklyn on Wednesday, August 20th having had two seizures, a BP of over 190, nausea, and the most severe headache I have ever witnessed in Nate. I came up by train hoping to bring Nate back home within the next day or two, and that was clearly not going to happen. It wasn’t until 6 days later that he had the go-ahead to come home, and then he still wasn’t feeling well-he got nauseous every time he sat up and could hardly stand at all. The only bright spot in our return were the activities of the Lindquist family when we pulled in to our drive around 9 pm. They were mowing our lawn and filling our refrigerator with food!

Because Nate had a seizure, he needed 24 hr monitoring of his brain waves, he had electrodes placed all around his head (note the urinal in the first picture is not taped to his head!) and then wrapped-it was quite itchy... Kari smiling for the camera-she forgot she had a mask on!

Well, now it is the first of September. Classes at Messiah start tomorrow and we are hoping for a degree of normalcy. Since Nate has been home, we have been to Harrisburg Hospital twice. The Wednesday after

returning from NYC was another difficult day and by the late evening Nate had another severe headache and spiking BP. We left Nate around 2 am in a hospital room after some doses of morphine and a saline drip. Well, to say the least, we were all quite discouraged! But the next
day was an injection of hope when we returned to visit Nate in

the morning - he was sitting up, smiling, and the cheerful countenance we were so used to had returned! It was the first time in over a week that I did not see pain in his eyes. We brought him home on Friday, but by Sunday his headache and nausea had returned and his BP was creeping up again. So another trip to the ER, this time catching it before it got out of control and they were able to reduce the BP and the headache and we were spared another night in the hospital. The bright spot of the week-end was the package we received in the mail from friends and colleagues from the School of Business, Education and Social Sciences... it was a package full of cards with well- wishes and prayers. What another burst of encouragement!

Although this note is long, allow me to indulge in a bit of reflection on the experience of the last week or so. Many of you have been keeping in touch with us either face to face or over the phone and we have been assured of hosts of prayer. I am grateful for such, yet it remains a mystery when so many have been praying for “removal of nausea” or “cessation of headaches” and yet we witness continued anxiety and pain in our son. A chaplain in the hospital laid hands on Nate and prayed for a miracle... I have heard more than once that people believe it is as hard or even harder on caregivers to go through such pain of a loved one vicariously, and I am inclined to agree to some extent. We know God is with us and is sustaining each of us through this journey, but still this process of prayer vexes me. If anything I am convinced of this... God desires an intimate relationship with each of us. These opportunities of prayer on the behalf of someone such as Nate and our family are opportunities for this connection with God to take place. This is by no means a trivial connection. The more I talk to God, acknowledge His presence, and remain in Him, the more the bittersweetness of the moment is amplified. Yes, the pain is still there, the kidneys are really gone, but the reality of His presence is likewise real, and undeniable... wow! I hope that as you talk to God on behalf of us and others, you likewise sense that presence that assures us that it truly is “well with my soul”. I am led to believe that at times it is not so much “what” we pray but “that” we pray that is important. It reminds me of that famous story of an interviewer who questioned Mother Theresa about what she prays, and she states that when she prays to God that she just listens... and when the question followed, well what does God say, she replied, “Nothing, He just listens”. Maybe, at least on occasion, prayer is spending time with God when neither speaks, but just listens...

May I encourage you to spend time with God, and if it is on our behalf, I would be grateful. Nate needs to get healthy, gain weight, stay out of the hospital, manage his BP, and be ready for the transplant, Lord willing on the 14th of October. Likewise, his donor, Ben, needs to stay healthy-body, mind and spirit. We are trusting God for His good pleasure and glory in all of this, as uncertain as things seem at times. Thanks so incredibly much for being a part of this journey with us!

John
For Katy, Nate and Hannah September 1, 2014

Btw, many of you know our daughter Hannah is now serving in Chaing Mai, Thailand for two years. You can follow her adventure on her blog : www.PurposefulDiscomfort.blogspot.com

 and if you ever care to become more involved you can check out her web address for donations by going to www.WorldOutreach.org/donatations

 and select Hannah Bechtold #273

Update 14

Greetings all,

It has been a month since our last update. This last month seemed to fly by being now at the end of the semester at Messiah. Home dialysis has had its ups and down this last month, unfortunately more downs than ups…. I think it has been harder on me than it has been on Nate, although he may beg to differ. Nate “hooks up” to the machine each night and the good news from the doctor of a couple of weeks ago was that he could shorten the time that he has to be hooked up to the machine during the night… instead of 9.5 hours, he only has to be hooked up for 8 hours. The downside is that he is still adjusting to the discomfort of two liters of fluid being pumped into his abdomen and then pumped out 4 times a night… the machine clicks on and off and hums a bit, and the abdomen distention sometimes wakes him up and makes it hard to get back to sleep. Furthermore, the machine at times sets off an alarm which tells Nate that there is some blockage in the line or some obstruction and one night there were a total of around 20 false alarms in one night. Thankfully he has had only one night like that, but nevertheless, it has been and continues to be an adjustment. We little realize how precious sleep is until we have to do without it! Thank God for the restorative nature of sleep, and even more so the sustaining power of God when you don’t get it!

As for the progress toward a kidney, Nate still has to have some physiological tests and tissue tests and the appointments for those are not for another month (although I hope he can get in sooner) so those of you who have signed in and have volunteered to be tested for compatibility will have to wait a while until all of Nate’s tests are in. I admit I get a bit impatient when I see what all Nate is going through and wish things would happen sooner than later, so I have been having lessons in patience this month. I am reminded of a verse in the  Psalms that was a verse I had taken to heart back in graduate school days, “But as for me, I trust in YOU, O Lord, I say, “You are my God.” My times are in Your hand” (Ps 31:14, 15), truly, OUR times are in His hands! No better place to be!

As of today, it has been rough because Nate has had a high fever and chest congestion for the past two days that have further challenged us. We went to the clinic this morning to make sure he did not have peritonitis and then to the family doctor to check that it wasn’t pneumonia or anything else… chest x-rays, blood work, extra dialysis were all part of his morning. He is still not sleeping that great and his body is just compromised and the effects are being realized. He missed his three finals today and that just adds to the challenges. Never a dull moment… we are still hoping things can soon become normalized, but it won’t be this week! Thanks for your support and prayers. It is so important to know that we are not in this on our own and that there are no surprises to God. Keep up the faith!

Shalom,

John

Update 13

Greetings everyone,

Our last update reported on Nate’s PD and getting home dialysis going. That was long awaited for and now we are adjusting to Nate’s new “life”. Every night Nate “hooks up” to a machine that pumps a special fluid into his peritoneum (basically his abdomen) and pumps it back out after it has absorbed all the impurities in his blood. This cycles through several times (lasting approx 9 hours) in a night and the plan is he awakes full of vigor but no vim J. Well, this has been an adjustment, as stated, and we are hoping he gets used to the process so that he can experience a full night’s sleep… this has yet to happen on a regular basis…. And by the grace of God, life goes on!

This last week, Nate passed another milestone in his life with renal failure and that was getting his hemodyalisis tube (in his chest-a catheter going under his skin and into a vein near his heart) removed. This was quite a process as it had been in since the initial emergency room visit in January. You will have to have Katy or Nate tell you the whole story, thankfully I was not there. It involved quite a “yank” from the doctor and a bit of spattering that I will not go into any further. If you have a stomach for it, Nate fished around the trash when the doctor left and took a picture of the tube as the only souvenir he was allowed (the picture is at the end of this email-warning, not for the faint hearted)… he could not bring it home… he asked and they said no… (he has to live with the disappointment of not having this tube hanging from his trophy shelf in his bedroom)! Now you should feel free to give Nate a hearty hug and you will not have this plastic knob-like thing pressing into your chest. It has allowed him to shower once again with ease. The doctor was surprised to hear that Nate was told not to shower with it and said that he could have done it, to which Nate replied, “Now you tell me, after I have lost my girlfriend”… (that’s a ha, ha… Nate still has a significant other, Kari, who has hung in there with him through this all).

The latest, and most exciting news is that Nate had his transplant interview at Johns Hopkins on Tuesday. We now have a better idea of what all is involved with that process. It was about a 4-hour meeting with about 6 different people – a social worker, a surgeon’s assistant, a nurse, a research assistant, a kidney specialist, and the surgeon who will perform the operation. They all agree that Nate is an excellent candidate for a transplant (as long as he doesn’t start smoking or drinking, or stops wearing his seatbelt or starts texting while drivingJ). They gave us several booklets explaining various aspects of the procedure like acquiring a donor (no coercion allowed, black market organs definitely not cool), and additional considerations of things not covered by insurance (numerous visits to JHMC and possible overnight stays, non-covered insurance items and medication costs) and how to pay for additional things (like organizations created to assist in “fund raising”). Insurance does pay for the expenses involved in finding, testing, surgery and recovery for a live donor and we were encouraged to start that process as soon as possible. The more potential candidates the better, and there is a web site to refer people to who are interested in that possibility. Furthermore, that person has full control over how involved in the volunteer process he or she wants to be… from just donating to Nathaniel, to offering to donate to someone else who might have a friend/donor that is a match for Nate and essentially “swapping” donors. Hence, even being an “ideal” match for Nate is not an issue if one is just willing to donate. Anyway, the web site deals with all of that and is the place for people to begin (https://johnshopkins.trcareportal.com/ if you register, all you do is provide your email address and create a password… you are then sent a confirmation which allows you to fill out an extensive questionnaire… “ you are not officially registered until you fill out that questionnaire). Furthermore, as extra expenses accumulate for such a procedure, we are considering  setting up a “charity” to help with expenses. As we find out more about that, we will pass that on as well.

For such an ordeal, it is amazing how upbeat and positive everyone was at Johns Hopkins. We were told that although a major operation, the success rate is high and the recovery period is fairly brief (4-8 weeks – a little shorter for the donor) relative to other major surgeries. Also, that it could occur as early as this summer which is obviously what Nate would prefer, and we likewise agree.

Thanks again for all your prayers and concerns. God is good, all the time, and we are counting our blessings all along the way! We appreciate so many of you who have shared your own experiences with kidney issues or chronic health issues as you seek to comfort and encourage us. You have shown us that this is not necessarily a comfortable journey, but it is agood journey as we are drawn closer to our God and each other. Keep up the faith!

Shalom,

John

Btw, many of you know our daughter Hannah is now serving in Chaing Mai, Thailand for two years. You can follow her adventure on her blog : www.PurposefulDiscomfort.blogspot.com and if you ever care to become more involved you can check out her web address for donations by going to  www.WorldOutreach.org/donatations  and select Hannah Bechtold #273

Update 12

Greetings Friends and Family,

Well, this was a big week for us. Nate began the training for home dialysis (Peritoneal Dialysis-PD), and made it through his third round of chemo, and has begun to taper off of his steroids. Talking to his doctor on Tuesday has lead us to believe that his kidneys have not really responded to any of the therapies attempted and there really are no further medical options in terms of helping to restore any level of kidney functioning.  But it has not ever actually been about the kidneys per se, but about God’s glory manifest through this situation, so we continue to hold on to the knowledge that God has this all under control in ways deeper than we can understand right now.

Nathaniel began this week learning about what procedures are necessary for his in-home dialysis by first learning what to do if he ever needed to do the PD without a machine. It can be done through a “low tech” gravity method which will always be a “back-up” procedure in the event the machine stops working. After learning about that, he spent time learning about the machine assisted PD. You can actually see it in the picture at the bottom of the page, taken after his first night of PD at home. The machine is no bigger than a small suitcase, and although not intended to be “portable”, it can be taken on trips and journeys away from home. Given that dialysis is done all over the nation, there are centers all over as well that can assist him should he ever travel and need it apart from central PA. That’s one advantage to having such a popular disorder! The biggest threat now is the potential for infection if he does not follow carefully and precisely the hygienic procedures for administering the dialysis. He discards all his tubing every day after use, and must abide by some very specific and intentional procedures to start the process every night. He must plan to be on the machine initially for around 9 hours a night which will mean an adjustment to his “student lifestyle”. Furthermore, after two nights, he is realizing the sleep process will take some adjustments and getting used to. His first couple of nights have not been great, dealing with fluid being pumped into him (about 2 liters-worth) and then being pumped out. The weight of the fluid and the space it takes up in his abdomen is not too comfortable as he attempts a full night’s sleep. The positive is, though, he should be able to have more “normal” days and a more flexible diet.

As for our spirits, the nurses and all that have attended to Nate marvel at his attitude and his cheerful spirit and for that we thank God and many of you who have helped to establish a strong foundation of faith and trust in God through your own “pouring concrete” into his life. Nate’s life has been built on a firm foundation through the many contributions of his friends and family and youth leaders over the years and we are humbled at such a “work crew”. We are inspired to do what we can to “pour it forward” as God gives us the strength and ability to speak of God’s faithfulness and grace and mercy to others who may be going through similar situations. God has not abandoned us in all of this, but to the contrary, has shown us the result of the years of living as part of a faithful community of believers that compels us to say along with Mordicai, that maybe we were have been placed where we are “for such a time as this” to bear witness to God’s power and faithfulness. Already, we marvel at the numerous medical procedures that have helped to maintain Nate’s life and we marvel at the incredible physiological workings too wonderful to comprehend. Doctors and others think they know something, but it merely scratches the surface and yet it is far beyond what most of us understand about the human body. We are encouraged by their experience and knowledge, yet we trust in the name of the Lord our God to see us through! Nevertheless, we have all had our “moments” of  anxiety, distress and frustration, but given the circumstances, we all are holding up fairly well. This is as much a testimony to your prayers and encouragement and sharing of concern for our lives as we go through this that we are so grateful to know we are not going through this alone. Again, the community/family of faith is a powerful presence in our lives. Thanks for being there.

Well, this is it for now. We continue to make adjustments and find God faithful in sustaining us. We trust likewise, that you are finding Him equally faithful to whatever place you are at with God as well. Keep up the faith and fight the good fight. Keep in touch as you are able, we appreciate the notes.

Shalom,

John

Btw, many of you know our daughter Hannah is now serving in Chaing Mai, Thailand for two years. You can follow her adventure on her blog : www.PurposefulDiscomfort.blogspot.com and if you ever care to become more involved you can check out her web address for donations by going to  www.WorldOutreach.org/donatations  and select Hannah Bechtold #273

Update 11

Well, it has been a while (2.5 weeks) since an update and I thought I would take this opportunity on a Friday afternoon to share a bit about what has been going on. Nate has been consistent in going to dialysis MWF and that has its ups and downs. For example, on the 17^th Nate had retained so much fluid over the weekend that he could hardly get out of bed or breath easily. So, being concerned, he called his doctor and they got him right in to dialysis that morning instead of the afternoon. That day, they took off 12 pounds of fluid in the matter of a few hours. That’s about a gallon and a half of milk weight-wise (gal Milk/8.5 lbs.).  This dialysis is most dramatic on Mondays when he has gone an “extra” day without dialysis and so retains a bit more fluid-which means over a week-end, we must be especially careful to manage his fluid intake. Then, last week he also had another round of chemotherapy to help kill off the white blood cells that seem to be attacking his kidneys. Seven to ten days after the chemo is when he is most vulnerable, having his immune system so suppressed due to the chemo. Unfortunately there are other side effects and other procedures related to the administering of the chemo that make me question whether the “cure” is worse than the illness. Thankfully, Nate seems to have weathered the chemo so far, although there have been a couple of days of discomfort and struggle to go to class. In about another week, we think he will go through this again for the third and possibly final time.

Some good news along the journey is that Nate is uriNATE-ing much greater than he ever did in the hospital during that first stressful week of this ordeal, and doing so on a regular basis… we thank God for this bit of normalcy in all of this, even though it is not clearly certain if his kidneys are doing much to influence this amount. Thanks to tons of you who have asked and are continuing to urinate with Nate in mindJ! Furthermore, the doctor has cut back on his steroid treatment and that has helped to reduce the amount of fluid he is retaining and he has found the right kind and dosage of medicine to keep his blood pressure down. All of this is to say that through this all, God has been faithful and sustaining.

Although we try to focus on the good and are bolstered by your encouragement and thoughts and prayers, I am beginning to realize that over the long haul (and it really hasn’t been that long… just a little over a month and a half) these sorts of situations do begin to take its toll. I can much more fully appreciate the patience and longsuffering that many individuals and families go through with chronic conditions and I marvel at God’s sustaining power… will it be enough to get US through? I believe, yes, but it is not without its share of doubt (many of you know that when it comes to medical stuff, I am a major wimp). Nonetheless, it is good to know of such a cloud of witnesses surrounding us and daily finding God faithful with the strength to make it through all the events of a day, and still find laughter and joy when we are together as a family and also when we are around many of you. Laughter truly is medicinal and I can’t imagine where our family would be without it. It is hard not to smile when I share with delight the “pee report” as if daily urination is equivalent to the Olympic medal count. Little victories DO add up to big victories of God’s care for us!

Upcoming events for Nate… he will have another round of chemo this Thursday and we now have an appointment with the Kidney Transplant team at Johns Hopkins set for the first of April. In another two weeks, we hope that we will be transitioning Nate off of three-day-a-week dialysis and to nightly dialysis in the home. As I said, this journey has its ups and downs… Nate is attending school, but he is not quite “normal Nate” in class, but he is hanging in there. Thanks again for connecting with God on our behalf. We wait expectantly for glimpses of his Glory through all of this.

Shalom,

John

Btw: We celebrated Nate’s 21^st birthday Feb. 28!

Update 10

Greetings Friends and Family,

In the name of full disclosure, I am sending you this update declaring that Nate had an improved urination this last weekend! Whereas Nate had not completely stopped this process, it was nothing to speak of until this weekend when Nate told me that not only was he feeling better and that some significant swelling had gone down, but also that he had a real good urination! We, of course, are cautiously optimistic, but nonetheless want to give glory to God for this indication that his kidneys might still have some life in them. As our doctor in New York suggested, some functioning is better than no functioning, but we will just have to wait and see if this continues. We anticipate another round of chemotherapy sometime this week which will mean Nate has to be especially careful not to be around any contagious illnesses, but he is hopeful another round will help improve functioning. During dialysis yesterday, Nate was officially entered on the transplant list, one of the first steps in quite a process for a successful transplantation. The more we learn about this, the more we will pass on. I still feel we are in quite a learning curve with this illness and still are waiting for a routine. His PD (peritoneal dialysis) doctor says that we won’t begin that process until the first of March. I was hoping for sooner, but we will be happy whenever that stage begins. PD will give Nathaniel much better and more frequent filtering which will help to maintain lower fluid retention and better all-around mobility and energy. Classes began for Nate last week and he thinks he will be ok with them. He has two in the morning and two in the late afternoon TTh, and only one around noon MWF. This has made it fairly convenient for break times and flexibility with getting dialysis. Given his condition, this likely could not have been any better class schedule for him… little did we know that when he enrolled last semester! Again, I want to thank you all for words of encouragement and your interest in our journey. Your interest toward us, far from being a distraction, is a beautiful reminder that we do not go through this alone by any stretch of the imagination. Presence is precious!

Reflection:

As I have stated before, this journey has availed itself of giving me time to ponder and consider prayer and its dynamic relationship to God and His presence. I have spoken to many of you about this journey and have gained much encouragement and insight. I am often uneasy about talking about “prayer” because it can mean so many different things to so many different people. We all have our unique experience with God and the word “prayer” just doesn’t seem to capture all the nuances to this relationship. We only use the term in the context of communication with God, we don’t pray to other people, yet we share with, talk to , relate to, reach out to, touch, speak with, persuade, negotiate with, plead, argue with, challenge, yell at, and preach to others. Sometimes, when I say I prayed to God, I actually mean I yelled at Him, and other times I have tried to persuade or plead with Him. Nonetheless, it still just comes out, “I prayed”. The word prayer, although useful in some contexts, is too generic in other contexts. What are we really saying when we say we are “praying” for someone? What do I mean when I thank someone for their prayers? The one commonality that resonates with me these days at least, is that when I hear the word prayer, I hear the word “connection”. I imagine people connecting with God on our behalf, not as someone shaking fearfully before the Wizard of the Emerald City, but someone who receives this direct link between himself or herself and the creator God. As I just finished sharing in our Authentic Living class this past Sunday, in John 16 toward the end of the chapter, Jesus says that his disciples will no longer ask anything of Him, but will go directly to the Father… “in that day you will ask in my name; and I do not say to you that I shall pray the Father for you; for the Father Himself loves you, because you have loved me and have believed that I came from the Father (v.26, 27).” God calls each one of us to Himself… He initiates, we respond. I imagine that as you join us in this journey with Nate, each one of you are connecting with the Creator God (I try to be careful with my updates to tell you what is going on, but not tell you what to “pray” – I leave that to you and your conversation with Him), what goes on between you two I believe can only be beneficial not only in bringing glory to God, but also in spilling over into blessing far beyond just Nate and our family. With this I am encouraged and we gratefully and humbly receive such blessings, knowing they don’t stop with us, but pass on to encourage believers everywhere the word gets out that you are “connecting” with God. Will we ever get to the point where in our conversations with each other we talk as if talking to ambassadors of the King, where our simple utterances to each other are completely within the context of prayer in God’s presence? Then, it will no longer be “I prayed for you” but “hey, stop… God is here, let’s talk with Him together, right now! Not head bowed and eyes closed, but face to face!” Until that day comes, thanks for your prayers!

Shalom,

John

Update 9

Greetings everyone,

It has been a few day since our last update… no news is good news… for the most part we are getting into a routine, except the weather is more of a game changer at the moment. After Nate came home last Wednesday we hoped to see the  specialist in NYC last Thursday, but that was rescheduled for yesterday. Other than that, there was anticipation of MWF dialysis and the beginning of school. Thanks to the weather, Nate’s only class on MWF has been cancelled and his dialysis was rescheduled from Wednesday to the previous day, Tuesday, the morning of our long trip to NYC.

Nate continues to be weighed down with water retention and is puffy in his face and ankles, and essentially all over. With the last two dialyses they removed a total of about 17 pounds of fluid which is great and we hope that continues.  He seems to be having more energy to move that weight around, which is good and we are all maintaining good spirits by God’s grace and mercy. The steroids make Nathaniel constantly hungry and he is on a somewhat restricted diet along with having to monitor his fluid intake, so that is the most inconvenient aspect of his life right now, but that is manageable.

Now for our meeting yesterday (you can skip all these details if you want and just get down to the bottom line):

We had a beautiful drive up to NYC on Tuesday, low traffic and clear skies with glistening snow-covered trees all the way. We found the hospital right off of the George Washington Bridge (a truly amazing, beautiful suspension bridge) and parked in the hospital parking lot ($15 for the first half hour, we paid $31 for our time there). You can feel the energy and research activity just by walking in to the place. Quite an exciting place! After filling out lots of details on an intake form, we had quite a bit of time to wait for the doctor given we were quite early and he was 50 minutes late from our appointed time, and even then, we spent about 45 min giving info to his assistant. After looking over all of his files, Dr. Appel came in and spoke with all of us. Nate has Crescentic IgA Nephropathy (CIgAN) meaning he has a very aggressive form of kidney disease. The normal form of kidney disease seems to have a genetic component of which this rare disorder does not seem to have. They are just now learning more about the nature of this rare disorder-Nate feels really special J! This disease is diffuse and global, affecting all of the kidney filters blocking them from filtering, which is different than the “normal” IgAN which typically manifests itself locally and affects only segments of the kidneys. This is partly why it hit so fast and hard. The doctor shared a most recent article he wrote with us stating some of the most current research on the disorder and also told us of other research being done that he is a part of. The article looked at those who have gotten transplants after having CIgAN, hoping to discover if the disease continues to affect a transplanted kidney. Of the 153 patients, only 15 had verified CIgAN (9%). Of these 15, only one was discovered with a reoccurrence of CIgAN. To the doctor, this was a good indication that in terms of transplants, this rare disorder is not likely to reoccur. Of course, the most important part, Nathaniel liked the sound of his voice and the way he talked. Furthermore, the doctor stated that the biopsy got a good area of tissue and he is fairly confident that most of the kidneys will not return to full functioning, but he wants to do all he can to preserve anything that may be left, so he wants to continue the chemotherapy for another month. Side effects are unlikely, but can be serious, so we do not want to continue with it beyond much more than a month without positive results. Those positive results would be a greater output in urine which right now is not that great (“Urinate for Nate”). The doctor was very straightforward and good at communicating with us and answering questions, putting us all at ease. I asked about the potential for a transplant, and he said that typically transplants occur when he believes the kidneys are completely “necretized” (all the kidney tissue is dead) and that might be up to 6 months, depending on the person and the kidneys. He was very positive, however about the transplant process and told us of several of his patients that have great experiences with their transplanted kidneys (all of his examples were of professional athletes-NBA and MLB stars) of which he has pictures with, inferring that they were his patients. Also, he wants to keep involved with Nathaniel for at least a month and see what happens, stating that Nate will continue to be a bit bloated, but that it should diminish a bit more than he is right now given dialysis continues to take off some of the fluid. He was very interested in seeing that Nate gets the best care and he assured us that he will be in touch with the doctors in Harrisburg concerning his treatment. He gave us copies of everything he went over with us for his doctors here, as well as copies of the abstract of the most recent article on Nate’s condition. He said that we would not have to come back to NYC but that he would definitely be involved in his case. We left with a great deal of confidence in this doctor and know that with God as the great Physician, He seems to have a fairly good assistant working on His behalf here on earth (even though he may not know it). As we seek His glory, and not just a healing, I am excited at the lives that may be touched as a result of this journey.  So…

The bottom line:

Nate will continue dialysis, transferring over to Peritoneal Dialysis in about another two weeks (allowing him more normalcy in his life).

He will continue his regimen of chemotherapy for another month or so (two-week intervals) and revisit his progress with the specialist in NYC (via the internet/phone) regularly.

      This will involve some degree of quarantine hopefully over weekends when his immune system will be compromised.

The likelihood of total kidney failure is high and a transplant would not be called for at least about 6 months.

His fluid will diminish some with continued dialysis, yet he will still be a bit bloated as long as he is on steroids which will also continue for another month.

God is faithful and good and this whole thing could be so much more worse were it not for His faithfulness and your prayers and continued connecting with us. We are really blessed in so many ways. There are moments of feeling overwhelmed and uncertain, but we do not fear, nor do we feel abandoned. Remember Nate as he starts school tomorrow and into the coming weeks, that he will know God’s sustaining power.

Shalom,

John