Well here goes. I’ve been thinking I need to do a blog to inform everyone – but it’s just so hard to figure out what exactly I should say. So I guess I’ll just type and it should come out good enough.
I will go back to the middle of May. Erik went in for his 1 year post transplant biopsy. He was feeling good – we had just gotten back from our NY trip – it was a great milestone to us. The full results took a couple weeks to get back, in the meantime Erik’s transplant coordinator emailed to tell us she was sorry but she wouldn’t be able to attend his 1 year meeting, but not to worry because all the test results looks good. So I didn’t even go with him to the meeting – kids had school and stuff so I stayed home to take care of them. Erik came home from the doctor appointment to tell me that things weren’t as good as we had thought. Turns out all the tests his coordinator had seen were good, but there were ones that only just came back the day Erik went to his appointment. Those ones showed things were not so good. Erik’s doctor explained that what they saw was one in every 20 cells were male – since Erik’s donor was his sister all his cells should read female in lab tests. The fact that 5% were male meant that his bone marrow was once again producing cells on their own – not the donor. But the good news was that 5% is not considered relapse. The best course of action would be to take him off his immunosuppressant medication as a much faster rate than normal. They would do this in hopes that his donor cells would come on stronger and fight any of the other ones – it is referred to as a graft vs. leukemia effect. So each week he was to take less of the medication and by July when he was completely off they would do another biopsy to see if the effect was taking place or not. They told us that many people can keep a delicate balance of this effect and live with low percentage of leukemia in their bodies for years. So we thought, I guess we will just wait until July to see how things are going – but we will be prepared in case the next biopsy isn’t very good.
To me now July seems so far away.
Since that doctor visit Erik has been seeing them weekly again. On Tuesday we went together and Erik went in with a few symptoms to tell them about. Since a few days before he had been having neck pain that would not go away. He was also dealing with a mild fever. They did his normal blood draws and tests – doing a few extra to check for any virus or sickness, plus a chest x-ray just too make sure he wasn’t sick. Everything came back negative for that. The only thing that we noticed different was that his white blood count was high – something they said could be attributed to the fact that he wasn’t feeling well. They sent us home with some pain medication for his neck and told us to call them the next day to report any changes in his fever.
We are now at Wednesday. The first thing that happened was the PA we visited with forgot to sign Erik’s pain medication prescription. Milo also came down with a fever. So we called the hospital to tell them Erik’s fever hadn’t changed and they said they were sorry about the prescription but that it was good Milo had a fever because then Erik may just have the same thing. Maybe it was a hidden blessing that the prescription was never signed. Wednesday night Erik was having a very rough time sleeping. His neck was hurting so bad he could barely move – making uncomfortable to even lay down. He was also still dealing with a fever. So at about 4:30 in the morning he called up to the hospital. After talking with a PA he decided to go up when they opened at 8 in the morning.
Thursday when they tested his blood everything changed. Leukemia can be detected early in a bone marrow biopsy. If it has grown stronger it can be detected from a simple blood draw. Another indication is a high white blood cell (WBC) count. A normal person has a count of 3,000-5,000 or 3-5. Erik’s count on Tuesday was 12.5 (12,500). Since he was having a fever though they told us to wait until our next weeks appointment and see if it would go down. Thursday his counts were at 21 and they found 25% leukemic blasts just from drawing his blood. Today we went for another test so they could see how fast things were going – his counts were at 30. (Last year when Erik was first admitted his WBC was at 85.) Tomorrow we will go for another blood test, the doctors say that three days in a row will give them a very good idea of what is happening.
So after all that here it is – Erik is now in full relapse. Our first news was that if he did nothing at all he could have days to weeks left. There is no curative action that can be taken at this point. We were given the option to have Erik re-admitted to the hospital for another round of chemo, this time infusing something called T-cells (taken from the donor) right after the chemo in hopes that it could fight the leukemia. We have gone through the chemo process three times already. This time it would be much harder just because of the fact Erik’s body has already been through so much and because now that he has had a transplant he is at risk for many more complications. This round would not be curative at all – in fact at the most we were told that it had only worked to prolong life a few more months for only a couple of patients. Because of this, and after much prayer and thought we have decided to opt for the other direction.
Erik has been prescribed a few new medications in addition to the ones he has always been taking. One of them has the potential to slow the leukemic growth in hopes that it can prolong his life. He will be able to continue to live at home and we are in the process of finding hospice care to help facilitate with any medical needs he might have.
These are strange thoughts to have continually on our minds – but yet here they are.
We have had many visitors in the past two days and it’s hard to answer the question “how are you doing?” I think the best response is one I heard Erik say on the phone yesterday, “I’ve been better.” We are dealing and we are coping and I think we are even trying to still let it all sink in. We know from last year that we have an amazing group of family and friends – we love you all. Your prayers and thoughts for us always make our burdens lighter. Thank you.
I will try to continue to keep this blog up to date to keep everyone in touch.