Wednesday, September 28, 2011

Saturday September 24, 2011

Moving Towards A Cure, Clearwater 2011
Miles for Hope

I'm so happy our family was able to be a part of the Moving Towards A Cure, Clearwater 2011 event. It was truly an awesome experience for me. Over 1,500 people showed up at Coachman Park in downtown Clearwater, Florida to bike, run and walk. Dana, Gina, Rachel, Joe, Brie, Jacob, Gavin, Tim, BJ, Charlie, Erin, Darbi, TD and I made up Jacob's team, Team Big J Willy! A special thank you for those of you who also made donations to Jacob's team. Thank you, Pastor Bob, Lani, Rosenburg family, Tokotch family and Belcher family. As of today's website reports, the event has raised a total of $151,473.00, well over their goal of $125,000.00! The day before the event, Miles for Hope (MFH) received word from Dr. Linda Liau of UCLA that the pediatric vaccine trial will be a go and MFH will be receiving their grant request in the coming days. 

Gavin really wanted to run with
TD and me......


Are you sure you're ready?

My Babies :)

Poster I made for the "Wall of Courage."

This bridge was part of the
5K route.  Over and back was a mile....


Getting serious, lol!!

By 9:30am we were all wiped out!!

Gavin had a bad fall
while we were at the event. 
Bloody head, chest and knee,
but still smiling!


There were 332 runners in the
5K chipped times.
I finished # 215, lol
TD and a lot of other
participants chose not to
be timed.

Cure Cancer
Cure NF2
End Brain Tumors

Kick Cancer's A.S.S. raised almost $15,000.00

I ran my first 5K
in 35.42 minutes. 
Lots of room for improvement!!

Where's my balloon?

Gramma Gina was at the event
with us, but she took most of
the pictures.  This is a photo
of her and Pop from Sunday
that I really like :)

Wish I had a photo of Tim and BJ - they were there too, but escaped the camera....

Friday, September 16, 2011

The Ps and the Gs this week....

What else is up, or as Gavin would say, “What’s that look like?”....

Gavin is doing great at preschool. He attends a Tuesday/Thursday morning program and we just finished up week three. This past week when driving around the roundabout on Killearny Way (in front of the church) Gavin would get excited and say, "My school! I go to school!" We wait outside for them to open the doors for the 9:00 am program and while we are waiting Gavin says hello and good morning to his other four classmates, Blake, Kate, Rachel and Zachary. Gavin very willingly goes right into his classroom, helps me put his back pack away, drops his snack into the snack basket, and goes off to play. I sign him in and he blows me a kiss good bye. It’s amazing what a big boy he is becoming. In the hallway leading up to his class room there is a cute "Gavin" picture he made describing himself. and on his cubby there is a picture his teacher took of him the very first day of school. All of the children’s families sent in pictures of their family for the kids to have posters of them on the wall in the classroom if they get home sick. I sent in about ten pictures for them to choose from and Gavin's teacher picked five photos. One is of Gavin and Gramma Gina, one of the five of us at Brie's dance recital, one of Gavin and Brie and the last two are of Connor and Miller. Grissom would be disappointed if he knew he got left out, lol. I’m just as happy as Gavin is with the program. He is coming home talking about Jesus and has new stories each day. Last week their theme was "All About Me" and this week it is "Down on the Farm." Today they had a visit from the Safari Man, but I have yet to get a story out of Gavin... he was too tired and fell asleep in my arms before I even got him into the bed after picking Jacob up from Leon yesterday.

Jacob and Brie's school is, well, school. The homework, tests and stress have begun. We will make it through, we will make it through (This is me finding my happy place)!!

Brie's dance started back last week and she has been twirling around the house, practicing her moves. She isn't taking art classes at Brush and Palette this semester because she’s enrolled in an art class at school. So far, her sketches are very creative and she said she is working on an awesome painting now. I can't wait to see it.

Jacob's favorite class seems to be his HOPE PE class. He is full of stories everyday about the things he is doing in there. Running track, doing push ups, and the latest was the long jump. He's sore some days, but I think it is so good for him. When we were in school we had a 45 minute PE class every day, every year! I'm so glad Jacob is outside moving around and getting exercise!

MOPS and MOPPETS started last week and I am so excited that I won't be missing meetings because of the trips to Gainesville. I love going to MOPS, learning and being part of such a wonderful group of moms. I really missed everyone these past few months.

Jacob got a new eye prosthetic. His original prosthetic was three years old and his socket has grown a lot so we were told it was best if he was made a new one. His new "eye" is nice, but needs a little tweaking. Jacob has another appointment in a few weeks to work out the kinks. Over all, though, he is happy to have a new one.

Jacob also received his resting splint. Mrs. Judy had Williams Orthopedics come see Jacob on Monday while he was with her for OT. It’s a sturdy splint that seems like it will hold up against Jacob! Jacob said it is comfortable, but hot. This morning he was complaining that his hand was a bit sore when he woke up, but that tells me it’s working. We want it to keep Jacob's right hand muscles stretched out and hopefully prevent any more "hooking" appearance. Thank you, Judy!

Speaking of OT, I had a converstation with the owner of Progressive Pediatric this week about vestibular rehab for Jacob. She said since Jacob is an older pedantic patient she thinks it would be best for him to see Charles G. Maitland M.D. Dr. Maitland has quite a resume. He is a professor and director in the Department of Clinical Sciences at the College of Medicine, FSU. He studied Pediatric Neurology and then Neuro-Ophthalmology at the University of California, San Francisco. Prior to his appointment at Florida State University, he served as clinical professor of Neurology at the University of Florida, Gainesville (a definite blemish on the ol’ resume!), and prior to that, associate professor of neurology at the Uniformed Services University of the Health Sciences, Washington, D.C. During the latter appointment he served as the neuro-ophthalmology consultant to the Vietnam head injury study. He is currently director of Neuro-Ophthalmology, The Balance Disorders Clinic, as well as the National Parkinson’s Foundation Clinic in Tallahassee. He co-directs the Florida State University Neurolinguistic/Neurocognitive rehabilitation research center at Tallahassee Memorial Hospital, where he also serves as director of Neurorehabilitation... And there is much, much more, but you get the picture. With the help of Dr. Julie Kelch's office, I got Jacob an appointment to see Dr. Maitland next Wednesday afternoon. I’m excited to see what he can offer Jacob to help restore some of Jacob's balance. I would really like for Jacob's, "I almost fell down the stairs today" or "I lost my balance in PE today and fell right on my back" stories to stop. We'll see.

Gavin and I took a trip to the Tallahassee Museum last Friday and had a wonderful time. All of the animals were out and about and the weather was nice. Gavin also went to his first Florida State Football game this past weekend and had a blast. Thank you, Jerry and Stephanie, for the tickets!! It was so great to see TD, Gavin and Brie smile so much. We really had a big time. It helped that FSU kicked some bootie! Jacob went to the game also, but not with us. One of his friends picked him up, they went and ate wings and went to the game. We never saw Jacob, but he said he had a great time.

Gavin is learning to ride a bike...well sorda :)

Scouts is out of summer mode and back in business. Popcorn sales have started, so be on the look out to buy some yummy Boy Scout popcorn this month!

Jacob's Facebook post of
this photo said "Needles Suck!"
This is what he slept in
Tuesday night.

Like I said in my earlier post, Jacob's infusion this week at TMH went well. We went to the hospital Tuesday evening when TD got home from work so Jacob could have his port accessed and labs drawn. The plan was to have the labs processed over night and Jacob's Avastin would be ready when we arrived in the morning. And it was! For those of you who have read my blogs, or those that are currently (or have in the past) undergoing treatment like this, you understand that this seemingly simple and small task is actually MONUMENTAL! We are ALWAYS WAITING! Anyways, we arrived at 7:45 am and the pharmacist was walking out as we were walking in. I filled out some first-time paper work and Jacob got hooked up to his Avastin. HIs nurse was super nice. She ordered Jacob breakfast and it arrived ten minutes after us. His tray consisted of eggs, bacon, sausage, pancakes, frosted flakes, apple juice, milk and gatorade. Jacob had eaten a pop tart and a banana before leaving the house, so he wasn't that hungry, but he didn't pass up pancakes! We put on a Disney wildlife video and settled in for the next hour. I almost had a heart attack when Jacob said his line was leaking. The nurse had left the room and his Avastin was running out of the line onto his tank top... I quickly checked to see if the connector was screwed in all the way and since it wasn't I took it upon myself to do so. So much for gloves, masks and sterile cover-ups when handling Avastin! My fingers haven’t fallen off yet, so I guess I will be ok. Jacob received his infusion over a 30 minute period and then received the saline to make sure the medicine in the line got pushed through. We were back home by 9:00 am to get Brie to school by 9:20. The only downfall was that Jacob slept with his port accesses, which he said was weird, and without having the two hour ride home from Gainesville to rest, he slept for most of the day. I was hoping he would be able to go to school, but he couldn't. Overall it was a good experience. Extremely nice to be so close to home. We spent a total of 10 minutes travel time to and from the hospital and an hour for port access and an hour for infusion. Can't beat that. Jacob will return in two weeks.
Me - "What are you and Brie laughing about?"
Jacob - "Look at me! I look like I've been
in a car accident! Lumped Up!!"

Lastly, we are all getting really excited about the Miles for Hope, Running Towards A Cure event next Saturday. Jacob's team, Big J Willy! has raised almost $600.00. Thank you so much to those of you who donated to our cause and to those who will be walking and running with us next week. It really warms my heart to see the goodness in people come out. I will post pictures and blog about the event in a few weeks.

As for this weekend, we will be at home on Saturday if anyone wants to see us... Tallahassee is going to be nuts with #1 Oklahoma coming to get a beat down by #5 Florida State Seminoles!! Woot Woot. Go FSU!!

Thanks for reading!! And thank you for your continued prayers and support.

Seminole Chop!!

Thursday, September 15, 2011

Jacob's first visit to Arnold Palmer Children's Hospital

Jacob received his first infusion in Tallahassee at the Tallahassee Memorial Kids Corner yesterday morning. He was sick afterward and slept most of the day, but felt better last night and went to school this morning.

Our house has been busier than a circus on an opening night, which means that things are pretty normal J. I know I’m way past due on updating the blog, and since the trip to Arnold Palmer Children's Hospital in Orlando was now two weeks ago, I might as well start with that.

Our trip to Orlando went very well considering the anxiety that I had prior to the trip. It wasn't a bad drive until we were about 20 minutes outside of the city and in the middle of crazy five 'o clock traffic. I will admit that I got us lost (only briefly!) after getting off of the interstate, but we found our way after a few corrected wrong turns. Downtown Orlando is very beautiful, but there are a lot of one-ways, and with the tall huge buildings everywhere, it is hard to know which direction is which. Mental note: Print the map next time in large print so Jacob can help me if needed! We found the Ronald McDonald House and checked in with no big problems. We arrived right at dinner time and a local firefighter ladder was there outside smoking chicken for dinner for all of the families. I was relieved that we wouldn't have to go out for dinner given the possibility of getting lost again :). The chicken was delicious and our room was comfortable with awesome decorations. There was a bug jungle painted on the walls with other bug-themed things throughout the small room. I'm surprised Gavin wasn't scared of the beetles that were as big as him painted on the walls, but he seemed unphased. Management brought us a roll-away bed since the two beds in the room are only twins and Gavin is so big now he and I can't sleep comfortably in a twin bed. I take that back, Gavin probably could! Jacob watched TV in the common area and Gavin and I played in the playroom. We all attempted to go to bed around 11:00, but that was difficult with Gavin refusing to sleep. Since we co-sleep at home, Gavin was completely put out that he had to sleep in a different bed than me, even though I had it pulled up to the foot of mine with my head at the wrong end, still holding him. Because Jacob slept for a lot of the ride down, he wasn't tired and wanted to hang out on his iPod with his music blasting through the ear phones. I was a bit frustrated because I was completely exhausted... silly BOYS!! I got up at 6:00 am, got ready, started to pack up and clean the room. The boys got ready, we had breakfast and headed over to the hospital. It was a short walk and our van was already in the hospital parking garage from the night before.

Arnold Palmer Children’s Hospital is very nice. There are kid-friendly areas all over the hospital with Disney characters and things to play on. We even enjoyed an outside play area while waiting for Jacob's labs to be processed. It was nice to see and visit with Dr. Smith and Mrs. Michelle. As usual, an intake was done on Jacob and Dr. Smith did an exam. We discussed Jacob's surgery being moved to a different doctor on a different date. The only thing Dr. Smith seemed concerned about was Jacob's balance changing. Other than that she said Jacob's bloodwork and neuro exam were good. We plan for Jacob to do another cycle of Avastin (12 weeks), have an MRI at Arnold Palmer at the end of November, take a break from chemo the month of December and travel to NIH in January for Jacob to have surgery on the abdominal tumor. After Jacob's surgery we will return to Dr. Smith and re-evaluate the Avastin and possibly add or move on to Rapamycin.

The infusion lab at Arnold Palmer is very different than Shands. They have a large room with a big “Tree of Life” in the middle of the nurses’ station. It reminded me more of a children's hospital floor than a lab. Each chair has it's own room with a curtain for the front but with walls on the other three sides. Jacob's RN for the morning, was a male nurse named Scott. Scott liked the Rays and I think Jacob liked having a dude to chat with for a change. Their procedures are a bit different than Shands. Scott had Jacob wear a mask and he had on a mask, gloves and a gown to keep everything sterile while accessing Jacob's port. After Jacob had his labs drawn we took a walk down to the gift shop and went outside to play for a bit and look around. It was hot and Jacob was wanting to play Xbox so we headed back upstairs after a shot adventure. Child Life brought in a separate unit with a TV and gaming system, which was nice because Gavin could watch TV while Jacob played games. Jacob had the super nice Child Life coach hunting for a football game he wanted to play, only for him to have to trade out Jacob's controller for one that wasn't "dead" when he returned with the game. Child Life also brought Gavin a really cool tool set to play with and I loaded the boys up with snacks and drinks. The next few hours went by pretty fast. I would be lying if I said Gavin was well behaved during our wait. Not sleeping well the night before, he was grumpy and I was ready to head home.
When the Avastin arrived Scott was at lunch and another nurse hooked Jacob's meds up. She was super tall and graduated from FSU. Once again with the full-on sterile gear. We were told the Avastin protocol was for Jacob to have his vitals taken every 15 minutes. That was different too. Jacob got his meds over a 45 minute period because it had been a month since his last infusion. I signed some papers, Jacob had his port access removed and we were on our way. Jacob was dying for McDonald's so we left the hospital and made our way down South Orange Avenue until we saw one. Have you ever eaten at a McDonald's Bistro? It’s just weird if you ask me, but Jacob was very impressed with the huge saltwater fish tank, fire place (in Florida, really?), and cherry wood tables. The menu has a hundred things to chose from, but who would go to McDonalds to eat a grilled chicken pesto wrap that is most likely grilled on the same flat as a greasy Big Mac?! Not that I’m knocking the Big Mac. It’s delicious. Just saying. Jacob and Gavin and I ate the usually gut rot. After a stop at Starbucks we were on I-4 headed home. The ride home was a bit stressful for me. It poured rain most of the way and I didn't think about needing gas since the van usually makes it to Gainesville and back on a full tank. Our round trip to Orlando was four hours longer. Duh. I needed gas. Jacob rested and Gavin slept almost the entire way home. We didn't make it home in time to get Brie from school, but TD picked her up and we were all back home in our Buckingham Palace for dinner. Another city, hospital, and medical trip conquered!
Sorry the below pictures aren't great - my iPod Touch doesn't take very crisp photos.

Sign at rest stop in the swamp
Outside of Gainesville, FL
Downtown Orlando

MD Anderson - Right next door
to Arnold Palmer



RMH Quarters

RMH Playroom