This week has been full of extremes.
We had several more low days this week. A few things contributed to the that. Obviously, not being home, Joe's numbers were dropping and jumping a lot, a small fever came back and he's had some weird muscle and joint pain and swelling.
Honestly, the muscle/joint issues hit us the hardest. Most of the week Joe has not been able to get up much at all and it has taken a huge toll on him to be in his room so much. It's odd the things you find you're thankful for when the get taken away. Unknowingly, the simple act of walking the floor everyday brought Joe a lot of joy and sanity. It was very difficult to have that taken away, especially this last week. He had a few different ultrasounds, MRI's and one aspiration to insure that there wasn't an infection or anything else more serious going on. Luckily there wasn't; however, they were not able to determine what the cause is. The best guess is that it is a combination of the treatment/drugs, old injures popping up, over use while his platelets were so low and (on the "ironic" flip side) his body reacting to inactivity.
For me, this week has been difficult because the glimmers of hope were snuffed away time after time. It was so hard to see his ANC finally come up only to go right back down the next day. There was so much celebration in that growth and I assumed (maybe foolishly) that once his numbers started to climb it would be a slow and steady recovery. I was ready for a stall, but not a drop. This whole week was emotional whiplash.
But, we survived. I am able to look at the week and be thankful for the time I had with Arleigh, time Joe and his parents had together, time I had to rest and time that I was able to spend with friend that are becoming so dear to me out here. It has felt so awkward to have to need people before I had the chance to give something. God has truly blessed me in the discomfort of immediate vulnerability. So for that, I have to say thank you to each of you. Whether you have given with time, food, calls, texts, letters and all your encouraging comments (especially after my last post). Everything you all have done is so cherished.
As for the good news. I am currently at the hospital having my last sleepover in Asheville! We got the go ahead to get the heck out of here (assuming Joe doesn't decide to spring another surprise fever on us). His IV was pulled this evening and for the first time in 37 days he doesn't have tubes hanging off his arm. While his numbers haven't gotten as high as they would like they felt that it was more beneficial to get him to Duke and not delay the appointment any longer. We will leave here around lunch time tomorrow and head straight up to duke for our appointment on Monday.
There are a few things I'd love to ask you to be praying for. Please pray that Joe has a big jump in his numbers before his appointment. We want him to be in the best possible shape for that. It also makes us slightly nervous to be heading out with lower numbers. The biggest issue in my mind right now is that Arleigh got a cold a week or so ago. She hasn't had a fever in sometime but she is still holding on to her cough and really runny nose. Can you all please pray that she is Completely healed of that before we get home on Tuesday? We SO badly want sweet time together as a family in this short stretch we have together. The last thing I want is to try to keep them away from each other. My hope is that the week or two we have together will be healing and restful. That it will somehow miraculously erase or at least dull the trauma of the past 5 weeks so that we feel strong and ready for the next stage.
We love you all. I think I can safely say Phase One is DONE.
Honestly, the muscle/joint issues hit us the hardest. Most of the week Joe has not been able to get up much at all and it has taken a huge toll on him to be in his room so much. It's odd the things you find you're thankful for when the get taken away. Unknowingly, the simple act of walking the floor everyday brought Joe a lot of joy and sanity. It was very difficult to have that taken away, especially this last week. He had a few different ultrasounds, MRI's and one aspiration to insure that there wasn't an infection or anything else more serious going on. Luckily there wasn't; however, they were not able to determine what the cause is. The best guess is that it is a combination of the treatment/drugs, old injures popping up, over use while his platelets were so low and (on the "ironic" flip side) his body reacting to inactivity.
For me, this week has been difficult because the glimmers of hope were snuffed away time after time. It was so hard to see his ANC finally come up only to go right back down the next day. There was so much celebration in that growth and I assumed (maybe foolishly) that once his numbers started to climb it would be a slow and steady recovery. I was ready for a stall, but not a drop. This whole week was emotional whiplash.
But, we survived. I am able to look at the week and be thankful for the time I had with Arleigh, time Joe and his parents had together, time I had to rest and time that I was able to spend with friend that are becoming so dear to me out here. It has felt so awkward to have to need people before I had the chance to give something. God has truly blessed me in the discomfort of immediate vulnerability. So for that, I have to say thank you to each of you. Whether you have given with time, food, calls, texts, letters and all your encouraging comments (especially after my last post). Everything you all have done is so cherished.
As for the good news. I am currently at the hospital having my last sleepover in Asheville! We got the go ahead to get the heck out of here (assuming Joe doesn't decide to spring another surprise fever on us). His IV was pulled this evening and for the first time in 37 days he doesn't have tubes hanging off his arm. While his numbers haven't gotten as high as they would like they felt that it was more beneficial to get him to Duke and not delay the appointment any longer. We will leave here around lunch time tomorrow and head straight up to duke for our appointment on Monday.
There are a few things I'd love to ask you to be praying for. Please pray that Joe has a big jump in his numbers before his appointment. We want him to be in the best possible shape for that. It also makes us slightly nervous to be heading out with lower numbers. The biggest issue in my mind right now is that Arleigh got a cold a week or so ago. She hasn't had a fever in sometime but she is still holding on to her cough and really runny nose. Can you all please pray that she is Completely healed of that before we get home on Tuesday? We SO badly want sweet time together as a family in this short stretch we have together. The last thing I want is to try to keep them away from each other. My hope is that the week or two we have together will be healing and restful. That it will somehow miraculously erase or at least dull the trauma of the past 5 weeks so that we feel strong and ready for the next stage.
We love you all. I think I can safely say Phase One is DONE.
