I have been negligent and not updated the blog for over two weeks. Well, no news is good news as the saying goes.
The past two weeks have had a few minor problems but nothing that was overly concerning. Stephen has continued to go into the clinic at LDS hospital each week and have his blood drawn, the dressing on his central line changed, and a check up with the doctor. His blood counts are continuing to improve. The medications he is taking are adjusted based on his blood work. For example, this week they stopped one antibiotic because his hemoglobin was too high, and they added a magnesium supplement because his magnesium was too low.
He is going longer periods of time between headaches and the muscle pain in his neck and back is improving. He has been going to physical therapy three times a week to help him with his neck and back pain. It has worked well. He is trying to focus on building some muscle and on gaining some weight. He is still really skinny. If he doesn’t have a belt on, his pants fall to his ankles. He was 135 lbs when he left the hospital and he is about 142 lbs now. Normal for him is about 165 or 170 lbs. I would love the weight loss but it is not a diet plan that I would like to try!
The skin problems he was experiencing from the GVHD (graft vs host disease) have cleared up. Because it has improved, the doctors started tapering him off steroids. He still is on a few extra medications because of GVHD but hopefully they will be ending soon as well. For at least two weeks now I have been giving him an infusion of an anti-fungal each night. I have to clean off an access to his central line, flush the line with saline, prime the infusion tubing and then connect it. After, I disconnect the infusion, flush the line with saline again and then put heparin in the line to prevent clotting. Then we put a sterile cap on the access point. I feel very ‘nurse’ like when I do it. It will be nice not to have to do it anymore just because it takes an hour or more for the process. I think Stephen will also be relieved not to have his mom working on him as well.
June 9th was Stephen’s 22nd birthday. One year older and wiser too!
This week he was able to go to his cousin, Daniel McGuire’s wedding. It meant a lot to him to be able to attend the temple ceremony, wedding dinner, and reception. We got a hotel nearby so he could lie down and rest between each event. It was a fun day and, other than the annoyance of wearing a mask all the time, it felt very normal. While it is strange to watch his friends lives moving forward in, what we consider, a normal direction (school, jobs, marriage). It is also wonderful to realize that life does continue on and we know Stephen is getting an education that is more valuable than a masters or doctorate degree – and he doesn’t even have to pay tuition! Just medical bills… and the insurance, friends and cancer grants are doing a fabulous job of paying all of that.
We have an appointment with the doctors this coming Tuesday and we are hoping that we will get a better idea of how soon they are planning to run tests and re-stage his cancer. We are assuming that it will happen in the next two weeks and then he will go back in the hospital for the second treatment around the first week of July. We will see what the doctors say soon.
Here are a few recent pictures: