The past couple weeks have been hard for me to want to sit down and write. For all of you who were looking for an update, I apologize.
Things have been going pretty well. We were able to get out of the hospital on Joe’s Day +14 (which is Amazing and earlier than we expected). Being in the apartment has been a huge improvement, but I think for both of us we were expecting that because of being here he would automatically feel good. We are so ready for “normal” that when it didn’t come it was a bit of a letdown. That is not to say we haven’t seen improvement, there has been a great amount. He hasn’t had to be on any pain medication since we were discharged, he’s sleeping better each night, his numbers are improving and his mucositis is healed. These are all things that we are so very thankful for, but what we really want is normal.
We are now on Day +32 and when I sit back and look at where we are I really am encouraged. We’ve been out of the hospital for two weeks when in many cases we could have likely still been in-patient. Joe has had no fevers and besides a little rash on his arms he’s had no signs of GVHD (side note- most doctors agree that a small rash is actually a good thing, they believe that it signals that the two immune systems are working together). He’s also back on a fully solid diet, however because of the mucositis he lost all his sense of taste; so meals are kind of hit or miss for the time being. By far the biggest challenge for Joe has been the fatigue. I think that in both of our hopeful naïve minds we assumed that once he was out of the hospital and was able to get a good nights rest much of it would dissipate. We have been assured that this fatigue is totally normal. Obviously his body has gone through a tremendous amount of trauma and it is working in overtime to try to heal. From what the doctors say it could take a full year for him to totally rebound. It is not likely that he will ever get back 100% of his energy and stamina but it is not unreasonable to think he could get back to 90%. After six months of functioning at 10% we would honestly count that a Huge win. As a good friend of ours said “well, I guess that means he’ll be a little closer to the rest of us then!”
I was able to get home to be with Arleigh for a week while Joe’s parents came to stay with him. It had been a few weeks since I had seen our girl and we were both way over due for some time together. It is so bittersweet to be with her and not have Joe there too. The toll of having our family split up in this season is definitely hitting us all. There aren’t really words to expand upon that…. It’s just painful.
Then next steps- at the end of this week we should have results that will tell us how far along the engraftment is. We were told that they expect to see that he is at about 90% but I am not clear on what it means or what they would do if he is not at that number. Lord willing we won’t need to know. Beyond that, it’s a long waiting game. Like I said before, we are at day +30. They typically require patients to stay in the area until day +100 however, we were told that if things are going really well that there is the potential to “start twisting arms” around day +80. Obviously this is what we are praying for. In either case, we’ve got a long haul.
Thanks again for keeping up with us. Sorry for such a late update. We love you!
We are now on Day +32 and when I sit back and look at where we are I really am encouraged. We’ve been out of the hospital for two weeks when in many cases we could have likely still been in-patient. Joe has had no fevers and besides a little rash on his arms he’s had no signs of GVHD (side note- most doctors agree that a small rash is actually a good thing, they believe that it signals that the two immune systems are working together). He’s also back on a fully solid diet, however because of the mucositis he lost all his sense of taste; so meals are kind of hit or miss for the time being. By far the biggest challenge for Joe has been the fatigue. I think that in both of our hopeful naïve minds we assumed that once he was out of the hospital and was able to get a good nights rest much of it would dissipate. We have been assured that this fatigue is totally normal. Obviously his body has gone through a tremendous amount of trauma and it is working in overtime to try to heal. From what the doctors say it could take a full year for him to totally rebound. It is not likely that he will ever get back 100% of his energy and stamina but it is not unreasonable to think he could get back to 90%. After six months of functioning at 10% we would honestly count that a Huge win. As a good friend of ours said “well, I guess that means he’ll be a little closer to the rest of us then!”
I was able to get home to be with Arleigh for a week while Joe’s parents came to stay with him. It had been a few weeks since I had seen our girl and we were both way over due for some time together. It is so bittersweet to be with her and not have Joe there too. The toll of having our family split up in this season is definitely hitting us all. There aren’t really words to expand upon that…. It’s just painful.
Then next steps- at the end of this week we should have results that will tell us how far along the engraftment is. We were told that they expect to see that he is at about 90% but I am not clear on what it means or what they would do if he is not at that number. Lord willing we won’t need to know. Beyond that, it’s a long waiting game. Like I said before, we are at day +30. They typically require patients to stay in the area until day +100 however, we were told that if things are going really well that there is the potential to “start twisting arms” around day +80. Obviously this is what we are praying for. In either case, we’ve got a long haul.
Thanks again for keeping up with us. Sorry for such a late update. We love you!
