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So This was a pretty uneventful week for Derek, that is good. Overall Derek had a pretty good week. There was no major health problems and if you ask me he actually may have a little more energy than normal. [...]
Derek had another vaccine treatment this week. He does not mind the flying or the hotel or even the hospital, but he despises the pokes (shots). And he knows that every time we go to Pittsburgh it is at least two shots. That makes it hard. They said the tumor was about the same size.[...]
What a special night.
When Derek was inpatient in the PICU last December we learned about Love Your Melon hats. They were unable to do a visit at that time, but they sent hats to Derek and Kate, making sure to get Derek his favorite color. Fast forward to a couple weeks ago. I got an email from Blake from Augsburg college asking if Derek would like a superhero visit. YES! [...]
Hello everyone,
It has been a few days since the last update. Things have been relatively quiet. That is good.[...]
Derek had another vaccine recently. He did really well. Derek was very scared of the poke. He will mentally work himself up, as he puts it, "it is my doom". I know no one likes shots, and the trial consists of two shots in his leg each time we go. So Derek's biggest problem is he knows the only reason we go to Pittsburgh is to get two shots. On a positive note, the trial did provide a person to pick us up at the airport and drive us to the hotel. Let me say, the guy's name is Darryl and he was such a positive person it was a joy to ride with him![...]
Hello All
I wanted to give a quick update on Derek and what are his current challenges. In comparison to what Derek has gone through over the past few months, Derek seems to be fairly stable at the moment.[...]
Derek had an appointment with his pediatric neurologist. The pediatric neurologist had Derek take a quick MRI prior to seeing him so he could identify how Derek's fluid was draining compared to his last quick MRI. The current MRI showed that the ventricles were smaller (less brain fluid backed up) and that there was less swelling in the affected area from the previous MRI. The cyst or the area around the cyst (it is hard to tell exactly) still had about the same amount of fluid or at least still showed up on the quick MRI as about the same size as the previous quick MRI so the pediatric neurologist tapped another 13 ml utilizing his Ommaya Reservoir again. [...]
I had my 1 month post op appointment with my plastic surgeon. He is very happy with how I am doing. There is slight regeneration starting in my left upper brow. That will take some time to fully come back, but that is not a problem. The incision is very well healed. I cannot feel half of my cheek and most of my ear. The ear part was known and is permanent. I am not sure if the feeling in my cheek will come back. I can still feel my inner ear and it is embarrassing when I cannot find my ear to itch it. I'm getting better at it though:0) [...]
Sometime in January a family who we do not know reached out to us because they heard of Derek's condition. Their boy, Judah, had the exact same cancer as Derek, anaplastic astrocytoma. They were very kind and offered us any kind of assistance and advice they could. Judah was diagnosed in December of 2013. He went through the same treatments that Derek has already done and that Derek will be going through.[...]
Derek had a good PT and OT last week. His two therapists saw him just before his most recent hospital stay and then about a week after his fluid was drained and they were both pleased with how he has bounced back.[...]
