SAIT # 3

SAIT # 3


Jacob's aunt Becky is an account manager for the Sprint Yellow Pages and she stays so very busy. Jacob, Gavin and I were more than thrilled that she took last Wednesday off to accompany us to Shands for Jacob's third infusion. If it’s possible to have a great day taking your child for chemotherapy, this last trip would definitely qualify!

Jacob's appointment was early and getting to Shands by 8:30 am requires us to leave our home by 6:00 am. We were happy to see Becky's smiling face bright and early and got on the road on time. It was a nice drive to Gainesville. There was very little traffic and we missed being blasted by the sun on I-10. Jacob stayed awake and chatted with us the entire way, which he never does, but since Becky was with us, he did. She is way cooler than me!!

Jacob was the first patient in the infusion lab. He was able to set up camp in the chair he wanted and he picked the same chair as his first trip. They came and accessed his port (painless again!!), drew his blood, and sent his labs off to be checked. We all snacked on our breakfast we brought and settled in for what we knew would be several hours in the lab. The chairs filled up quick and it was heartbreaking to listen to the little girl next to us having her IV placed. After talking to her and her mom later, we found out that they were from Orlando and worked for the same company as TD's sister and the little four year old girl has the same birthday as Brie. They were very nice and the little girl, who I am ashamed I can't remember her name now, was very sweet to Gavin. She was watching Snow White and she pulled her screen down for Gavin to see and later they shared a wooden puzzle toy on the floor. I almost had a heart attack when Gavin stepped on her IV infusion tube, but no harm was done. Gavin was very sweet to her - he kept rubbing her hand. Little things like this always touch me because Gavin can be so wild. The same morning he checked on the little girl across from Jacob and they discussed a book she was reading. About the time I was thinking it was time for them to let me know Jacob's labs had returned good and they were ordering his meds, I walked to the nurses desk to ask and they were logging in his Avastin. It was ready to be given to Jacob. Since Jacob had tolerated the last two infusions well, this visit he was to receive the drug over a 45 minute period and then receive the bag of saline to insure all of the Avastin had gotten in. The time seemed to go by fairly fast. Becky sat with Jacob and they listened to music and played on Becky's iPad. Jacob showed her his moves on the PS3 Ballers game and I played with Gavin. I always love to spend time with all of my children, but I really enjoy watching them interact with others. I love to watch Brie get instruction at dance, laugh with Mrs.Gina, or gossip with Becky. I love to see Jacob fish or play basketball with TD and Mr. Dana. It is always heartwarming to watch Jacob and Brie play with Gavin. On this morning I especially loved seeing Jacob smiling and talking with Becky. Having chemotherapy and smiling at the same time seemed impossible a month ago, but it’s not and I am thankful. Another highlight of our morning was the little boy next to Jacob. He had a little dancing and singing bunny and he kept pushing the on button and dancing like crazy. It was so adorable. The nurses were dancing with him. Even Gavin got in on it a little. We all sang and laughed and clapped for him. I thought what a great place to be healed. I hope so much this medicine is helping Jacob and all the other children we have met and spent time with.

During our visit we met a social worker named Michelle Richey. She is a lovely woman and happens to be the daughter of our pastor in Tallahassee at Killeran United Methodist Church. She told us about two special things Jacob could sign up for, Camp Boggy Creek and Caleb's Pitch. Camp Boggy creek is a year round camp serving seriously ill children throughout Florida. They offer week-long summer sessions for the children and family retreat weekends for the whole family. They do swimming, horseback riding, fishing, and have an indoor basketball court. The kids can even get their infusion there if it is needed at the time of their stay. The camp has a full medical staff. We signed Jacob up and hope he will get to attend this summer. Since he suffers from brain tumors and they don't have a NF2 week he will go with other kids from North Florida who have similar tumors, suffer from cancer and can understand the trials Jacob is going through. The Caleb's pitch program is exciting also. Caleb’s Pitch, Inc. is a non-profit organization in Gainesville, Florida dedicated to providing support and enjoyable experiences for children receiving care for life-threatening medical conditions. The majority of these experiences involve patients and their families interacting with various athletic teams at the University of Florida. Jacob chose baseball as his first choice, football as his second and basketball as his third choice. I am looking forward to seeing what they will set up for Jacob.

When Jacob was done receiving his saline and the end of the Avastin he was free to go. We set up his next appointment and headed to lunch. We were all starving and Gavin was getting tired and grumpy. He had been so good all morning. Jacob was suffering some nausea and dizziness and he was exhausted. We were hoping food would make him feel better. Becky treated us to Cody's Roadhouse Grill. It was a lot like the old Roadhouse in Tallahassee. Gavin drew on the paper on the tables and threw peanuts on the floor. After a yummy meal Jacob wanted a Dairy Queen milkshake… And he got it. I guess that will become a tradition, getting Dairy Queen on our way home from Shands. I'm not sure my waist line can handle it though (and TD is getting quite jealous!). The ride home was nice, filled with great conversation and lots of laughter. Jacob once again didn't go to sleep, which he always does, because he didn't want to miss a minute with his Aunt Becky. We got back in town in time to get Brie from school and Becky took her to her art class on her way home.

Infusion # 3, check!

I can't express how much it means to me for those of you who have gone to Shands with us, helped us with the high cost of gas and given us your precious time. You are all wonderful distractions for this difficult time in Jacob's life.

Becky - Thank you! I love you dearly!

SAIT2

SAIT2


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.