The doctor’s comment at Stephen’s appointment today was “Well, you are certainly keeping all of us on our toes!” Which is another way of saying “you are a very abnormal patient and we don’t quite know what to think of you.” We’ve know Stephen was weird for a long time but we love his weird!
It’s been a week since I last posted so I thought it was time for an update. The last week has seen some slow but steady progress. Saturday and Sunday mornings he started the day with confused speach which we treated with migraine medicine and it went away. Today he began the day at 5 am with his left side going numb. We got the migraine medicine out again. Each time the symptoms resolved within 10-15 minutes after taking the medicine. Then about 30 minutes later a headache hits in the back of his head and neck. The doctors are having him try a new medication which reduces the frequency of migraines.
The rash on his face, neck and upper body is still there. It seems like it might be getting a little bit better in the areas that it first began. The doctors are quite certain from the biopsy of his skin that it is Graft Verses Host Disease (GVHD). This is a common problem when you do a transplant with donor stem cells, however, it is a very unusual complication when you are using your own stem cells. Unusual is what we do! They treat the diseased skin with oral steroids and wait to see if it resolves. Hopefully no other organs than the skin become involved. There could be a benefit to this. There is a slight chance that the new cells are also fighting lymphoma cells and you can get a bonus of extra dead cancer cells from it. They call it Graft Verses Lymphoma effect. The doctors are watching him closely and will check his skin again in a week. In the meantime, they are having him take extra antibiotics to counter the increased chance of infection that taking steriods gives you. The doctors don’t want to schedule any dates for his second transplant until they see how quickly the GVHD goes away. There is a window of time from 30 days to 70 days from stem cell transplant to begin the second transplant. Today he is at day 28. They plan to do a PET/CT scan in 3 to 4 weeks to restage his cancer.
Stephen has had some great times mixed in with his headaches. Sarah has taken over the job of ‘nanny and nurse’ while she continues to look for full time employment in her field of Public Relations. She is great at making Stephen get up and do something. She has had him grocery shopping at Macy’s in a motorized cart, to the theater to see ‘The Avengers,’ outside for our Memorial Day barbeque, and exercising his brain by playing cards. I think I just might have to pray she doesn’t get full time work so that I can keep her in my employ!
It is interesting how cancer and other problems cause all of us to think and do things that we wouldn’t normally do. My sister, Shannon, has been inspired by the endurance required of a cancer patient. Even though there isn’t much choice, you have to keep going day after day whether you want to or not. Shannon and her family decided they wanted to get a group together and run a 5k in Ephriam during Skandinavian days in honor of Stephen. They started running and training. Last friday they completed the 5k. Shannon and her husband decided that they would run the entire way even if they felt like walking. I’m so proud of them! Shannon brought over her number that she wore in the race and gave it to Stephen. For some people running a 5 k is a daily routine but for a non-runner it is a huge accomplishment.
Another sister, Kate, and her family have a sno-shack that they use to employ their high school age son during the summer months. They supported a cancer fund raiser and sold sno cones at it. She sent stephen an awesome cancer foundation shirt from it with a facebook theme. I love it! Cancer – dislike. Cure – like.
So many others have supported us and continue to support us through meals, helping with our kids, lending us an extra car, getting protien drinks and so many other things that I can’t list them all. We most appreciate your prayers. We know that God is aware of us and is watching out for Stephen and each one of us. Love to you all.
Here are a few pictures: