The Night Watches

.from our family to yours. may the joy of the savior's birth fill your homes.

Jack's appointment went well yesterday. We had a great nurse take care of us, which was a relief. There were tears, but they were short lived and quickly forgotten with movies and lollipops. This is an answer to your many prayers. I hope you are encouraged, dear friend and reader. God hears and answers prayers. A couple things were hard to navigate through, but I am prayerfully faith filled for the coming month. Because his counts are still high, and they wanted to increase his dosage to 125%. This is the same dosage that wiped him out last March and put him in the hospital. This was what I was afraid of, and so I was quite apprehensive about agreeing to this. I felt the strength and courage to push back and question this while trying to respectful to the Nurse Practitioner. We came to an agreement to increase his dosage with a count check in two weeks to make sure this dose is not too high, instead of waiting the whole month to check his counts again. The second issue, was that s...

Tomorrow is Jack's treatment day. We are going in a week earlier than the normal schedule, because otherwise he would be all juiced up on steroids on his birthday and Thanksgiving next week, a not so happy scenario for anyone. So because there is some flexibility in his schedule, we are going in tomorrow. Our appointment is at 10:30, and likely we will get out of the clinic by 1 or so. It seems that we really do not get out of there in anything under 3 hours. Seems the norm for out-patient visits, the average being 4 hours. Gladly, this is just for a blood draw to get labs and receive his IV Chemo, which means we can bring all the snacks a little boy could ask for! His counts have been on the high side for the past couple visits, so I think he may end up getting an increase in the dosage. The last time the Dr.'s increased his meds (last March), the dosage was too high and he really suffered from it (hospitalized for 10 days in April). I feel...

I can hardly give a more succinct reason for why this blog is so frequently neglected than we are busy living life. There has been a lot going on, between school activities, church activities and meetings, and just life! My little boys are growing so fast, their birthdays are around the corner, as are the holidays and with that a whole lot more to do and less time to blog! I feel like I have been in a season of adjustment and learning, always learning, how to balance it all. I try not to be too set in my ways, that when a new element comes, I am not totally thrown off balance. But that happens too. Seems like a different lifetime, 8 years ago, when Jordan asked me to be his wife. So much has happened in that 8 years. It seems like we have a rhythm that follows this pattern: Jack's treatment day, followed by a week of steroids, recovering from steroid week, two really fun busy and happy weeks... repeat. In the mix of that somewhat simple breakdown is a busy schedule that we are cons...

Jack went into the clinic today, for his monthly chemo and a spinal tap, only to have the spinal tap postponed for another month because his counts were too low. We have been fighting a bad cold here for the past week, with fevers and stuffy heads and lots of runny noses. Jack had been dealing with a low grace fever off and on for a couple days, and a pretty severe cough resulting in a lot of nebulizer treatments. He seems to be feeling better, but this cold/fever thing has his counts really low. His ANC was only 800. In the past, when Jack is sick with a cold of some sort, his ANC goes way high. So I was actually surprised that it had dropped so low. So after a shorter visit to the clinic to get his IV Chemo and counts checked, they listened to his breathing and the anaesthesiologist was not comfortable putting him under with the wheezing she heard, along with the low counts. So we go back in two weeks for a count check/blood draw and in one month for the spinal tap. As we approach...

And we're back! I keep getting feedback from a few readers, that my absence from blogging has them wondering how we are doing! Well, we are doing great, and I think I will be able to be a more faithful blogger this fall, since one of my babies is now IN SCHOOL!!! Yup, that is right, Tyler boy is off to Kindergarten this year! He was so excited this morning and has been counting down the sleeps until he started his first day. He missed the first week of school, as we were away on a family vacation, but hey, it's kindergarten right? This morning, was exciting for him, getting his new school clothes out and backpack on. Watching him walk into that big building, he looks so small. I know he is going to love it, and I am so excited to watch him grow as he learns to read and about science and math. What fun, to be at the beginning of watching your child go to school. Of course, I made him stand for a bunch of pictures... gotta document the first day your first born goes to school!!

"In the day you entered into a covenant with God, and he with you, you entered into the most impregnable rock and fortress, and covered yourself in a castle of defence, where you may (modestly) defy all adverse powers of earth or hell. If God cannot save you, he is not God. And if he will not save you, he must break his covenant. Indeed, he may resolve to save you, not from affliction and persecution, but in it, and by it!" - Richard Baxter, from Voices from the Past So excited to get this book. A dear friend told me about it, and I just ordered it. I actually ordered a few books and I am so excited to get them. Isn't that so fun, being so excited to read new books. I just finished Unbroken, and that was one of the best books I have read in a while. Reading is such a gift, I am so grateful for the many truth-filled books available to consume. We are busy living life, enjoying summer, busy with family and friends, trips to the pool, cook-outs, keeping the house toge...

All this rain, makes me long for those sunny blue skies we had just this past weekend! I know the rains will make for greener grass, but boy do I miss playing outside. The boys, however, are really enjoying making mud pies. I don't have much to report on. Life has been returning to "normal" since we got home from the hospital. Jack is feeling good and he has definitely fully recovered from his suffering he endured just one month ago. The kids are learning to play and share, to differ to one another. We are staying home a lot, helping them to learn to obey and trying to avoid spending money unnecessarily (which happens whenever I go near Target)! We have really just been hunkering down at home, enjoying each other, and getting some routine in place, chores established and order. I took out one of my favorite lenses for my camera and rediscovered why I liked it so much. I spent the afternoon the other day taking pictures of my yard and our fig tree, my kids, and the messes...

"All these people were still living by faith wen they died." Hebrews 11:13 "By faith they lived-- it was their comfort, their guide, their motive and their support; and in the same spiritual grace, they died, ending their life-song in the sweet strain which they had so long continued. They didn't die resting in the flesh or upon their own attainments; they made no advance from their first way of acceptance with God, but held to the way of faith to the end. Faith as precious to die by as to live by." ~Charles Spurgeon, Morning and Evening May 2 I read this today and it filled me with hope to live my life well. To live each day not consumed with what I must accomplish, or where I need to go, how I am failing or even how wonderful my successes are; but full of faith that my standing before God has not changed and will not change. It can be well with my soul all my days. I pray this is how I live my life. Not that I am thinking of death over much, but more on...

Seven years ago, I became Jordan's wife. In that seven years, we have had 3 children, moved 7 times, 1 major job change, 1 cancer diagnosis, and traveled to 5 countries. Man, a lot has happened over the course of our marriage. To think that we have been friends for 9 years and together of 8 years and married for 7... well it is amazing. Where has the time gone? I certainly do not want to boast in any success story of us. By no means are we just lucky in love either. We have had fights, conflicts, we have had trials and difficulty, just like everyone else. Not every day in our lives together has been perfectly peaceful and without hardship. Yet, throughout the entirety of our marriage, a consistent thread has been woven, a faithful truth has sustained. God has been near to us, he has sustained us, and he gives us hope. Ours is not a success story or marital success. Ours is a story of two people who have been rescued by a great savior, rescued by grace over and over again. And it i...

Friday we woke up with the expectation to be staying at Children's Hospital for a couple more days, with Jack's counts crawling there way up to two hundred. I was packing my bag to spend the night at the hospital, only to get a text from Jordan that his ANC went from 90 the previous day to 230! We were likely going to be coming home that afternoon! AMAZING. Simply put, God is amazing. I could not get to the hospital fast enough. Such happy news. And truly shocking. We had taken him off of the morphine the previous day, and he did really well with that. The doctors finally figured out what virus he had, Roseola . He had pretty much a textbook case. Fever for 5 days, then he broke out into a head to toe rash. We thought the rash might have been a reaction to the blood transfusion he got, but it stayed until a day ago, and a reaction to blood would have looked a lot different. So, we came home Friday afternoon. My mom, who had been watching Tyler and Dylan kept them one extra day...

Another day here at Children's Hospital, sitting in our room, while my baby sleeps. He was up most of the night, having trouble sleeping, mostly due to the fact that I was not sleeping next to him in his bed. I tried to get him to let me sleep on the couch, but he would not have it. He also was having a tummy ache most of the night. Somewhere between the alarms beeping when his meds were finished and him crying because i wasnt next to him, i caved and snuggled up for the remainder of the night. I think that was at 3:30... So now he is sleeping away. This morning, his counts took a little dip. I had been expecting them to go up maybe a little, not holding out for them to go too high, but instead they went down a little. The Dr. Isn't concerned. Kids like Jack can have a little bit of a mini roller coaster ride with their counts going up and down. We are hoping that the upward swing continues tomorrow and through the weekend, and we will be able to leave by Saturday or Sunday....

Just got his counts for today. I was expecting them to hit rock bottom. Zero. But happy news for today, his ANC went all the way up to 100!! Praise God! He had a blood transfusion yesterday, and then slept the rest of the day away. We are trying to space out his Morphine dose a little bit today, to see how he is really feeling and to see if less helps with the constipation. But if he is in any pain again, we can up the dose again. We are spacing it from every 2 hours, to last night it was every 3, and today we are going to try for every 4 hours. We will see how he is doing with that for now. I did get a smile or two out of him yesterday, which was the sweetest moments of the day. I hope today is a much better day. I am staying with him today and sleeping there tonight, so I will not be able to update much till tomorrow. We still have a long way to go to complete recovery, BUT we are finally headed in the right direction. Keep praying for our little guy. His mouth sores still look pret...

How kind of the Lord to lead me to truth this morning, and meet me in my sorrow with the truth that he is mighty to save, and that we can hope in Him. I know he sees every tear, and every plea. My help comes from the Lord. Psalm 33:6-22 6 By the word of the LORD the heavens were made, and by the breath of his mouth all their host. 7 He gathers the waters of the sea as a heap; he puts the deeps in storehouses. 8 Let all the earth fear the LORD; let all the inhabitants of the world stand in awe of him! 9 For he spoke, and it came to be; he commanded, and it stood firm. 10 The LORD brings the counsel of the nations to nothing; he frustrates the plans of the peoples. 11 The counsel of the LORD stands forever, the plans of his heart to all generations. 12 Blessed is the nation whose God is the LORD, the people whom he has chosen as his heritage! 13 The LORD looks down from heaven; he sees all the children of man; 14 from w...

Jack's counts are really low today. Hard to not be discouraged with these numbers. ANC: 10 Red Cells: 6.6 White Cells: 0.6 Little buddy should be getting a transfusion today, as these numbers are well below what the cut off is. These numbers are not what I had hoped for. Pray his bone marrow stop being suppressed and that it start making lots and lots of new blood cells so he can recover and feel better. I haven't gotten an update from the Dr. yet. Just counts. " When I am afraid , I will trust in you" Psalm 56:3-4

I am exhausted and about to turn in for bed, after a long 30 hours at the hospital with Jack. And though the time there is long, there is no where I would rather spend my time right now. Jordan is at the hospital tonight with little buddy. I am really glad I spent the night with him last night, mainly so Jordan could get some much needed rest. It was also really beneficial to be there as we realized that his pain management needed to be adjusted significantly. By 3 am, we figured out the Jack needed to get IV morphine every two hours. He has been on that since, and as much as I hate to see him so groggy and glazed over, I know that he is not in as much pain as before and sleeping has come a lot easier. He kept spiking fevers last night and today, which is no good, but his blood cultures keep coming back negative, which is really good. It is hard to not know what is causing all of the fevers and what virus he has. Every time a doctor comes in, I interrogate them if questions, and feel ...

Before I get into how Jack is doing, I must thank you for praying for my boy. Thank you for lifting us up in prayer. Thank you for serving us practically with meals, child care, and many many other numerous ways we have been served. We are so grateful, and humbled that so many would take the time to read about and pray for us. So thank you. I am not sure how much detail to go into... the last time I updated the blog, just a few nights ago, we were home gearing up for another night caring for our boy. I forget that when I am updating on Facebook, I am not getting to the blog! Tonight, my home is missing two beloved men... Jack and Jordan are sleeping at the hospital. Jack was admitted Friday morning with a fever of 102 and since then, he has only gotten worse. His ANC has gotten all the way down to 40 this morning, and that is after a blood transfusion. He is pretty much miserable right now and has been for the past two days. He is on codeine to ease is suffering, and he is gettin...

Little buddy is tucked into his bed, hopefully for the night, and at least for the next couple hours! Turns out he had an ear infection brewing in both ears, and the sores on his mouth have gotten worse. The dose of steroids he has been on has been actually helping keep him going, as it turns out, his blood levels are very low. In fact, they said that if they had been at the clinic earlier in the day, they would have given him a blood transfusion. His ANC has gotten down to 670 and his platelets are below 80. Not the kind of numbers you want. So we are fever patrol, praying that he does not get sick in the next week, as a fever will automatically have him need to be admitted to the hospital since his counts are so low. They have lowered his Chemo dosage down considerably, in the effort for him to rebound back to a healthy level. He is also on two antibiotics for the ear infections and the mouth sores that they think are a viral infection. We also are giving him pain meds at night to he...

Last night Jack was up pretty much all night (he only slept between 3 and 5 am) with ear pain and mouth pain. Instead of doing another middle of the night ER trip like last week, we are taking to the clinic today. And instead of waiting until Friday to do his blood work and going a second time in one week, that will also be done this afternoon. We hope it is just another ear infection and something a little dose of antibiotics can take care of, and that the appointment will go quickly and smoothly. Jordan is taking him now, so that I get a break from the hospital and another Dr. visits for a little. I would trade places with Jack in a heartbeat though. I hate seeing the tears in his eyes and his pleas to not go to the Dr. I know that one day, this will be behind us. For now just praying that Jack be more aware of the love we have for him and the nearness of God, than the pain he is currently experiencing. "God is our refuge and strength, a very present help in trouble"...

Its time for a little Jack Update! Little buddy is doing OK. He has a full head of hair again, which has grown back in much more curly than before, and a little different shade of blonde. I miss his hair short, and since it was becoming quite bushy, I gave him a little hair cut yesterday. I think he looks adorable, no matter his hair! He has grown quite a bit too. I think he has gained a couple pounds over the past year and has gotten taller too. Since he got his port put in back in October, he has has not had one fever or infection in his line. This is amazing! Just goes to show that the likely hood of the tube he had before being the culprit for so many infections in the year prior. We have enjoyed many baths and spontaneous activities we were not able to enjoy before, due to the fact that we had to keep his tube dry. Life has become more normal for all of us in a lot of ways that one would normally take for granted! The latest things were are working through are getting his meds to ...

For years I have been wanting to go down to DC for to see the cherry blossom trees with Jordan. And for years, it has either rained, or we have missed it for various reasons. Well, since we live only 15 minutes from downtown DC, we had no excuses this year! We packed it up and headed into the city with the masses! We had to park really far away, but it was so worth it. It was a perfect day, and although the kids were tired from the long walk, we enjoyed our time. And being that we live so close, it isn't a huge flop when we only stay for a little visit! Some pictures of the our day... you might notice, Jack doesn't look that happy and energetic... well he hasn't been feeling very well. I am working on a Jack update now, and hope to post that in a few... but for now, here is our day in DC.

It can hardly seem possible that I overlooked this post! It has been in my draft folder for almost 3 months! My big little boy, is a month away from being 5 1/2! He seems to be getting so mature, so big, and it has been happening so fast. I think that he has hit a growth spurt in a major way, eating all day long, constantly telling me how hungry he is. He just seems so big to me! He has gotten to the size, where snuggling him is a little clumsy. Like he is too big to fit in my arms and lap anymore, and doesn't really want to sit there for too long anyhow! He still is my little sweetie though, and I grab snuggles from him when I can. He has become such a great helper to me both with Jack and Dylan. Whenever Dylan is naughty, or trying to splash in the potty, or unroll the toilet paper, Tyler is on the run to save the day! It is hard to believe he will be entering Kindergarten next year. Where has the time gone? There were so many moments, when pregnant with Tyler, and our live...