Updates about Andrew's DLGNT
Overall Andrew has been living "normal" life with not much change from last month. He does still get mild headaches several times a week and has to stop whatever he's doing to lie down for half an hour or so. He had some more major seizure
Read moreAndrew has been doing fairly well. We are so thankful he went five 1/2 weeks without any seizures. He did have what was probably a mild one last week, but he recovered quickly and was back to normal in a couple hours. He continues to have a few headaches
Read moreWe received the results from Andrew's most recent MRI. Unfortunately, it shows the tumor is now in his spinal column as well. Thankfully, he does not seem to be having any side effects related to this. The oncologist seems very optimistic that he will show a positive response
Read moreAndrew has been on his new medication, (MeKinist) now for nearly a month with no side effects. We are thankful for that! He had a fun birthday and enjoyable Easter. We are grateful he was feeling well for both of those occasions. Easter this year was such an important reminder
Read moreAndrew's birthday was Friday and he had a great day. Saturday, we went to his grandparents' house and swam and had dinner with them to celebrate him. Sunday morning, he woke up with some seizure activity that took him out of commission for several hours. Thankfully, we
Read moreAndrew's birthday was this week and it was a good one. There have been so many disappointments the last year from events being missed or rescheduled due to his not feeling well. Our prayer this week was that he would feel great for his birthday, and he did.
Read moreToday Andrew begins a new medication, a MEK inhibitor called trametinib, to hopefully reduce the tumor. It is not a chemotherapy, so on a good note, he will not have the typical chemotherapy side effects. It does, however, have its own long list of possible side effects, some major, but
Read moreI have realized that there are over 30 wonderful people or groups praying for Andrew, and there is just no way I can keep updating everyone on a regular basis during normal life. I apologize that I can’t text everyone individually, but we’re going to have to go
Read moreWe got back to CHLA late last evening via medical flight & ambulance. Sounds exciting, but it was actually a very long, tiring, and emotional day for Andrew. He was in PICU but just got transferred to his regular floor (4th). Other than being tired, emotional, and homesick, Andrew finally
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