Tuesday, June 29, 2010

MDA follow up

We are leaving Houston now after a LONG day of waiting! I am attempting to do this update on my iPhone while we are on the road. (Don't worry, I'm not the one driving). Mark had his blood drawn and had an MRI last night. Before his MRI, we got to see a friend that we made last time we were here. She had surgery the other day, so she was here for that from Ohio. It was good to get to see her again. Mark's MRI was scheduled for 9 last night, so we were at the hospital pretty late. While Mark was getting scanned, his dad and I sat in the waiting area. I try so hard to "keep the faith", but sometimes it's just really difficult. I had so many "what ifs" running through my mind and I was feeling scared and lonely. I couldn't keep the tears from falling. Since it was late, they were closing up the front waiting area and moved us to the back. I sat next to a man who told me that he had visited with Mark back there before his scan. This man's wife also has Glioblastoma. It was good to talk to somebody in the exact same situation as me at the exact same time as me. God always provides what we need- that's a huge blessing! This morning we met another friend (I posted about her before- she and her husband live in Frisco and she is at MDA for radiation treatment now) and her sweet mom for breakfast. We had a good visit with more tears and laughter mixed in. We talked about how we are so grateful for God's love and grace that even if our miracle on earth is not provided, there is a much better place awaiting Mark. I have been really struggling with the reality of this cancer lately. I want to be prepared in case my desire for Mark to live is not God's will, but I want to remain faithful and full of hope and peace. After breakfast we went to the hospital to wait for Mark's appointment time. There was some problem with the computer system, which caused Mark's doctor to run a couple of hours behind. It was a lot of waiting we did today. We finally were called back and we met with several different doctors. We were not able to see Mark's MRI because of the computer problem, but the report said there was no change from before treatment. That is good news! A HUGE blessing! We talked about his treatment going forward. He is going to do a clinical trial that will last for a year. Mark will take an increased dose of Temodar (chemo) for 7 days on and 7 days off for a year. Then, he may also have up to 3 additional medications to take as part of this trial. I will do another post soon to give all of the details about those meds and how they are supposed to work. The doctor gave some encouraging stasticics regarding MDA research and Glioblastoma. He said that they have seen 2 times the amount of people with GBM, living 2 years, and tenfold the amount living 10 years!! That is the most encouraging thing we have heard so far. Mark doesn't normally like to hear about numbers, but he loves hearing news that good. Since he doesn't want to know the normal prognosis, I can't post about it here, but you can look it up online and see just how amazing that 10 year stat is! So, we are ready to get going on his treatment again and see what other amazing blessings God brings to us. Thank you all for your continued prayers and support!

Wednesday, June 16, 2010

Another Hospital Stay

I’m sorry it has been such a long time since I posted. I’ll try to keep this one relatively short for trying to fit so many days worth of information in it. :) Anyway, we have been back from Houston for a couple of weeks now. After we were back home for about a week, Mark got a sore throat and felt that he should go to the doctor and get it checked. I took him to the freestanding ER/Urgent Care place near our house. They couldn’t do anything for his sore throat, but they wanted to check his blood since he had just finished Chemo about a week before then. They said that the machine got an error message, so they took his blood again. The machine still couldn’t read the results because his white blood cell count was so low. He also had a little bit of a fever, so they gave him a bag of antibiotics and sent him to the hospital. As soon as we got to the ER, the triage nurse called Mark back and put a mask on him for his protection. Mark’s mom was with us (I couldn’t drive that far to the hospital because I had just had my back surgery) and they made her and me wear a mask too. We were in the little room in the ER for several hours. They gave Mark more IV antibiotics and some Tylenol for his fever as they waited for a room to be prepared for him on the oncology floor. They took his blood again and found that his white blood cell count was 0. They weren’t sure exactly what kind of infection he had that was causing his sore throat and fever, but they were very cautious because it could have killed him. It seems so weird that he was so close to death just from a little cold or something! He had to stay in the hospital all week. (Monday through Saturday) They continued to give him IV antibiotics, but his fever was not coming down. Then, he got several fever blisters on his mouth, so they started giving him an antiviral medication 5 times a day. That made his fever finally come down. They still gave him antibiotics in an IV several times a day in addition to the antiviral pill 5 times a day and a shot in his stomach every day to get his bone marrow to start producing white blood cells. It took a couple of days for that shot to start helping. His counts went up high enough and his fever was gone for long enough that they let him go home on Saturday. He still has to be really careful though. We all wash hands like crazy around here and use a ton of hand sanitizer. I clean everything with a super strong cleaner that kills all kinds of germs and Mark wears a face mask when he has to be around any other kids or large crowds of people. Mark did so well with his treatment, that we just did not expect for him to have any problems when we got back home. We were supposed to have an appointment with his oncologist in Houston on the Friday that we came back home, but he got sick and had to cancel Mark’s appointment. So, we didn’t get to find out any information about what to expect the next few weeks. After talking to the nurses at the hospital, we found out that it is pretty common for people to have extremely low white blood cell counts 7-10 days after finishing Chemo. The name of that condition is called Neutropenia. The doctor at the hospital told Mark that since he will be continuing Chemo for a whole year, we should expect that he will become Neutropenic several times and we should be prepared for him to be hospitalized at least a few times in the next year. We read an email from the American Brain Tumor Association not too long ago that said that an increased dose of Temador (the oral chemo that Mark takes) for longer periods of time, have been shown to be effective against Glioblastoma. That was encouraging to us, and Mark is planning on joining a clinical trial that includes an extra dose of Temador (so he will be taking double the usual amount for a year), which we feel hopeful about that helping to fight his tumor(s). But, since his levels dropped so low with the one dose, we are a little worried about how his body may react with a double dose. We go back to MDA at the end of this month for Mark to get another MRI, get more bloodwork, and meet with the oncologist there, so I guess that is something we can discuss with him while we are there. Well, I guess I will go ahead and end this post now since it is already so long. I will try to post again really soon to tell you about all of the people that we have been blessed by being able to visit with and talk about some of the emotional issues we have been dealing with lately also. Thank you for your continued prayers!