The Night Watches

This is Jordan, and I don't normally blog. I leave that to my wife who has better pictures and better thoughts to post. I guess I could if I really tried, but most of it would most likely be worthless anyway. But I wanted to write to share how God has been working in our family through this time. I've been keenly aware of two things during these weeks since we found out that our little boy has cancer. The first happened the day after we found out. Tali and I were both exhausted and still getting the details of how bad his cancer was on that day. I went down to the cafeteria for lunch and I sat by myself trying to collect my thoughts. It was then that it hit me, "I really do trust God!." This may sound obvious, but for me in that moment, it gave me a profound gratefulness in my heart to the Lord. Because growing up in the church, around doctrine and godly men and women all the time, I had learned about the sovereignty of God and I had been inundated with truth about Go...

Since we got home on Wednesday afternoon, we enjoyed two really sweet days of recovery and rest with Jackson. Things were going really well both days, and even the nights were going well. After Jack got treatment on Friday, things started to be a little bumpier than before. As I said in the previous post, he has been throwing-up a few times each day, and has not been feeling very well. He also has been having lots of yucky poops (sorry for the excessive details!) and so his little bottom is VERY raw. Poor little man is having a rough few days. Every time I put on protective gloves to clean is IV or change a diaper (the chemo comes out in his urine and is not good for us to touch), or bring his meds to him to take, he starts to cry. I know he will get more used to these things as time passes, but it is hard to hear him cry and even harder to convince him that what I am doing is for his good, especially when it hurts him a little. Jordan and I both made it to church today(not at the sam...

Last night around 8 pm, our oncologist who is head of our case called to tell us the results of Jack's bone marrow biopsy. She said it was good news and better than they could have hoped. They had been hoping to find less than 5% leukemic cells and when they did the test they found less than 1%! God is so good, and we are just amazed at his intimate care of our son. She was so happy with how he has been responding to chemo, and we are thrilled to hear this report! We are so grateful for the many many prayers lifted up on our sons behalf and we have no doubt that God is hearing and answering those prayers. Thank you dear friends. Something we were not expecting to happen, the nausea and vomiting has set in. Poor little buddy, last night he threw up 3 times over the course of the night and 1 time today. He sat around on the couch all day, just not feeling well and being pretty miserable. We were not expecting this, as he did not get sick at all with the first round of chemo he receiv...

We are here at Children's Hospital again for Jackson's first day of outpatient chemo treatment. Poor little guy has not been allowed to eat since last night, and normally, this would not be the hardest thing for him, as he is generally easy to distract. But, on the steroids he is taking daily, he has an increased appetite. So much so, that he wants to eat all day long. Last night, at 3 am, he woke up starving, asking to eat. Yesterday morning, our first full day home, he asked for Mac n' Cheese for breakfast, and ate almost a whole box. So yeah, the fact that it is 10 am and he has note eaten in 12 hours is really really hard on him. Shortly he will be going under general sedative for a bone marrow biopsy and a lumbar chemo treatment. After that, he will be able to eat. He will also be getting some chemo in his Broviac (central IV). We will know tomorrow some of the results of the bone marrow biopsy. Hopefully the results of this will be that there are less than 5% leukemic...

Well, the past 24 hours have changed things again for us! The biggest update, is that we are being discharged tomorrow afternoon some time! The reason this is so crazy is that the Dr. who was on the floor yesterday, was telling us she wanted to keep us here for the entire first month of Jack's treatment. We had begun to think through how we could do this as a family and all the changes that would entail.... and then our nurse came in this morning and told us she was pretty certain we were going home, as early as today if we wanted!! Let me tell you about the past three days that lead up to this decision of our doctor. Firstly, you should know that when Jack was diagnosed with Leukemia, he had a blast count in his blood of 37. That count is now at ZERO!!!! After the central line was put in on Thursday, they began his chemo treatments Friday. He had been having a fever up until that time. He has responded so well to the chemo, and other medications, that he has been fever free since...

"The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness. The Lord is my portion says my soul. Therefore I will hope in Him." Lamentations 3:22-24 This has been the cry of my heart these past few days. When thoughts of the future loom ahead and what this is going to look like in a week, month, year are ever present, we are seeking to take things one day at a time. And even as we take it one day at a time, each morning, we are faced with more of the unknown- what the day will bring, how Jack will be feeling, how he will respond to his meds, how he will respond to the staff here, when the nasty side-effects of chemo will begin... the list of unknowns are seemingly endless. Not only is the thought of what the day will bring full of unknowns, but we are also very tired, as we are not sleeping much at night and so we are tempted to view the day through the filter of weariness. So yes, it is a fight each...

Friends- "God is our refuge and strength, a very present help in trouble" Psalm46:1 Much has happened since I last wrote only 2 short days ago. We found out much later that night a new diagnosis, that our sweet boy has leukemia . We were not completely shocked but we were certainly shaken. After I posted about what was going on at Shady Grove, and we waited a bit more for some results, and we were informed that we needed to take Jack to Children's Hospital in DC for further testing with specialists. This raised our concern level quite high as you can imagine, that even with a snow storm coming, we were needing to make this trip. I began to google the combination of things they had found in the tests done on our little boy (swollen spleen, low platelet count , swollen lymph nodes) and came up options that were NOT Lyme disease, although a few of these symptoms did also look like Lyme. As a result of the google quest, I came across some concerning outcomes, one of the most...

I have long been meaning to update about the health of our family, but as you will read, we have not had much time for the blog. As I write, I am sitting in the Pediatric Emergency Room, waiting for Jack to return from getting a sonogram done on his abdomen. For the past month, he has been pretty sick, with ear infections, and various other ailments. The issues became pressing, when we noticed his glands in his groin area swollen and he was limping. This quickly escalated to where he could no longer walk at all. We took him for blood work, and they found that he had gotten Lyme Disease. We thought we had caught it in the early stages, and so the Dr. began a cycle of amoxicillin . That was 3 weeks ago. His glands all over his body have continued to swell, and he has been pretty much miserable. So here we are today, to see if this is all Lyme Disease, or if something else is causing all of this. He has been a trooper and has put up with a lot of poking and prodding. We are so aware of ou...

I can hardly believe that Dylan is 9 weeks old! Time has been so full and there is much going on here in the Kauflin casa ! I have hardly had time to reply to emails, let alone take pictures and blog about anything! Dylan is growing, and getting cuter and dearer to me. He is by far my smallest baby (even though he came out the biggest!), he is taking his time porking up, which I am totally loving that he is so small still! Tyler was 15lbs by 2 months, and Dylan is only 11 or 12 lbs. In the midst of all that is going on, I took some pictures of my sweet boy today.. enjoy the sweetness of his little face and big eyes!