The Night Watches

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.