Wednesday, April 13, 2011



I guess it’s time to come up with a new heading for our trips to Shands. Reading the date and "Trip to Shands" is becoming repetitive. Maybe I’ll just start numbering Jacob's infusion trips. Shands Avastin Infusion Trip # 2 as SAIT2. Not sure this will be any better after #26, but at least it keeps it simple.

Thanks to the help of Jacob's Nana, Wednesday went well for the many appointments scheduled. He had his labs done, went to financial review for his EEG, completed an hour basic EEG, sat through his second Avastin infusion and had a consult with the neurologist to review the EEG results. If it sounds like a full day, I assure you, it was.

Having Jacob's port accessed was the first thing done. We went to Dr. Smith's clinic and thankfully, once again, Jacob didn't experience any pain having the needle for the day placed. The lidocaine cream really does it's job and the press-and-seal keeps it all in place. When the nurse was taping a gauze over Jacob's port he asked her when she was going to take his blood and he smiled when she said she already had. Jacob's port is awesome!

The paper work for having the EEG done was quick and painless. Seems like I sign all of the same papers no matter which clinic we are in and for whatever kind of appointment Jacob has that day. On Wednesday I signed the same papers at all three appointments. Anyways, the EEG started right on time. Jacob has had a few EEGs in the past, but it has been many years since his last one. I didn't think the EEG would tell us much since all of the results from the previous ones have always presented normal findings. The tech doing the EEG was very nice and she had a very colorful room decorated with flowers and colorful pictures. It was a very comfortable atmosphere. The tech first took a red marker and drew small marks all over Jacob's scalp. It took her many minutes to attach all the wires. After she was done she wrapped Jacob's head with gauze. With Jacob laying down, she flashed lights at several different speeds at Jacob's eyes, with his eyes closed. It looked like a strobe light. I tried to record some of it to show Jacob later, but the lights were flashing too fast for my camera to pick up. It only looks like there is a light on in the video. After the light test, the tech gave Jacob breathing commands. He did several different sets of deep breathing. Lastly, she told Jacob to take a nap, and he did. At that time I returned to the waiting room where Nana and Gavin were playing happily. The remainder of the EEG took about 20 minutes. Jacob came out refreshed and was ready for the next thing, as long as we went to lunch first.

After a pit stop at Wendy's we were back at Hematology and Oncology and Jacob was ready for his Avastin infusion. Jacob's labs had returned with normal results, so as soon as a chair was free Jacob's Avastin could be ordered and he could be on his way to getting his second infusion. The infusion lab was full and we waited over an hour for Jacob to get a chair. We ended up in the isolation infusion room. It’s a nice little tidy room next to the infusion lab for kids who can't be exposed to others during their infusions. It was the only chair free and no one with a low white blood count needed it so it was given to Jacob. It was nice for keeping Gavin out of trouble, but Jacob and I decided we like to be in the big room much better. We like to see all the nurses and talk to the other people in the lab. Regardless, Jacob was able to play the PlayStation 3, eat his lunch and watch TV. It took them about an hour to get Jacob's Avastin ordered, made and delivered. We’ve been told it is a very delicate cycle since each bag of Avastin for Jacob's infusion is about the same cost as a very nice car. It was 2:00 pm when Jacob's Avastin drip started. He was scheduled to receive the medicine over a period of an hour this trip and at 3:00 sharp it was done and the machine pump was beeping. Just like last time, the nurse brought in a saline bag and hooked it up to Jacob's machine to ensure all of the Avastin made it in. After the saline was done Jacob was free to go. Jacob did not experience any nausea or stomach pain and the infusion seem to go by with no problems. Gavin took a nice nap in his stroller and Jacob, Nana and I were able to sit and chat and listen to Jacob play his video games. The time went by fairly quickly.

When we arrived at Shands that morning, I checked my email while we were waiting for the nurse to access Jacob's port and draw his blood. I had received a nice email from one of my friends, Susan, whose daughter, Cara, has NF2 and is a patient of Dr. Smith. Her email said that Cara would be at the infusion lab that afternoon with her older sister and that she hoped we could meet her. On our way out of the lab we were able to meet them. Cara is a lovely girl, as is her sister. She attends high school in Gainesville and is even taking several college credit courses. She is the youngest of three girls. I enjoyed our short chat and I look forward to seeing her and her sister again. I hope one day I will get to meet her mom. She’s given me such wonderful support. Cara is the first person Jacob's age that either Jacob or I have ever met face to face that has NF2.

We left the lab in a bit of a rush. Because Jacob's appointment had run so late with oncology, he was very late to his neurologist appointment with Dr. Edgard Andrade. We got there at 3:50 and even though we were told the doctor would be leaving at 4:00 he didn't come in to see Jacob until 5:00. He did spend a long time talking with me and did a short exam on Jacob. He informed us that Jacob's EEG was abnormal. It showed a lot of misfirring in Jacob's right frontal lobe. He said we could do a three day EEG study, but suggested increasing Jacob's seizure medicine first to see if it helps control the few episodes Jacob’s had of speech slurring and eye rolling over the last year. We agreed to the increase. We discussed if increasing the seizure medicine (Trileptal) was safe wit the Avastin treatments and he said it was. Dr. Andrade said he was going to contact Dr. Asthagiri and go over Jacob's results. He wants to see Jacob back over the summer to see how he is doing with the medicine increase and the mild seizures. He said the right frontal lobe controls speech, memory and thought. Dr. Andrade is going to send a referral for Jacob to be seen and evaluated by Neuropsychology, which studies the structure and function of the brain related to specific psychological processes and behaviors. I haven't heard from them yet. We also briefly discussed the possibility of the right frontal lobe tumor having to be removed.

Over the last week Jacob has felt pretty good. He’s complained of some dizziness, which could be from the increase in Trileptal or from the Avastin. He’s been tired, but no headaches. He did have a nasty nose bleed on Saturday which is a side effect of the Avastin. Jacob went to school, played basketball, went to the mall with a friend on Friday evening, spent the weekend hanging out with out-of-town family and celebrated Gavin's two year birthday with us. The Avastin seems to be agreeing with him for the most part. I’m concerned about the mild seizure activity Jacob is having though. In the entire month of March I only witnessed one episode of speech mumbling, slurring and eye rolling and over this past weekend he had two episodes. One lasted several minutes while I was talking with him. They are scary. I'm not sure how all of this is going to play out, but I appreciate you following Jacob's story and your continued prayers and support.

Our next trip to Shands will be next week, Wednesday, April 20th. Thank goodness the only thing Jacob has to do that day is the infusion. I believe Jacob's Aunt Becky will be accompanying us for the day. Jacob is looking forward to spending the day with her. She can brighten any situation with her enormous sense of humor.

Thank you Mama (Nana) for your help last week. I appreciate so much you coming with us, helping me with the high cost of gas and being there for whatever we needed!

EEG Information:

What is an EEG?

An EEG is an electroencephalograph. It is a recording of the electrical activity of the brain. The EEG provides information about the way the brain works, which may help diagnose a disease or injury and/or guide treatment. The brain receives information, like light, sound, touch, and temperature from all parts of the body. The brain sends information to all parts of the body to help with activities like controlling breathing, controlling heart rate, and coordinating muscle activity. This information is sent by small electrical messages. Many of the brain’s electrical messages also control thought and memory. When a person is healthy, electrical messages to and from the brain make certain wave patterns. When a person is ill or injured, the electrical EEG (Electroencephalographs) messages to or from the brain may make different wave patterns. An EEG records these messages.

How does an EEG work?

To record electrical messages, small electrodes are placed on the head. These electrodes, or discs, pick up the brain’s electrical activity, which is recorded by the EEG instrument in a waveform on a computer screen. The image is stored on a computer so the doctor can look at it later.

Who performs an EEG?

A skilled EEG technician performs an EEG. Each EEG technician has knowledge of the equipment used, and concern for the children served. A doctor, called a neurologist, reads and makes sense of the EEG recording.

1 comment:

  1. You are a wonderful mama! Your kids are so blessed!