Home away from home

We weren't home for long, it seems, before we had to pack it up again! This time, it has been due to a broken AC. It broke sometime Saturday and hopefully we will have it on again in the next day or two. The first two days it was broken, we toughed it out at the house... but we knew Sunday afternoon, when it was 90 degrees INSIDE, that the fans were NOT going to cut it! Sunday night we all camped out in the basement, which was a lovely 80 something degrees... all four of us... us on the pull out couch, Tyler on the cushions from the couch and Jack in the pack-n-play! Nice and cozy... and almost unbearable! Monday morning all of us were a little more grump than usual!

So we packed up again, and we are now staying at our friends, the Lucas' house. They happen to be at the beach for their family vacation for 2 weeks... so the timing couldn't have been better! The boys and I spent Monday at the Kauflin's house... soaking in the delicious AC. And we have been here at the Lucas house since Monday.... can't say that I am complaining about staying, here.... having a pool in the backyard has been quite the blessing and fun activity for us! We are so blessed to have friends and family that take care of us during this "trial!"

So, I have tons of pictures to post, and Jack's 6 month update, but am away from home, and cannot post them! Hopefully not too much longer now! So, in case you were wondering where we had gone... yes, we are still alive!

Comments

Diagnosis and Grace

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...

.coming home.

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...

.Day by Day.

"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...

The Night Watches

Search This Blog