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!