Friday, April 13, 2012

April 2012 Update

I pulled up the blog today to write about our trip to see Jacob's doctors this week, but once again, I find myself wanting to write about the other stuff. The fun stuff. Our "normal" stuff that makes the hard stuff sting a little less. Please scroll down to the bottom if you just want to read about Jacob's Arnold Palmer appointments this past Monday and Tuesday. If you’re in it for the long haul, this is my attempt to summarize the last few months.

It seems like I blinked and winter was over. A lot has happened since my last post in the beginning of February. I am very happy to be sitting and reflecting :) Where should I start? Sports are always a conversation starter in our house…

The Giants won another Super Bowl... and my favorite Manning left my favorite NFL team. Boo! Guess I'm going to have to get a new jersey, um, without TD's approval that is. As sad as I am that football is over for now, I am thrilled that baseball has started and our Rays swept the Yankees on Opening Weekend. Go Rays!!

I celebrated my 37th birthday. Yikes! And my daddy turned 70 years old. It almost isn't fair since he looks barely 50. A testament that fried chicken and beer are better for us than we think... Just kidding, Daddy. I think you're the best!

Gavin and I started a new playgroup at the FSU Institute for Autism, aka First Words, aka CARD. Gavin is one of the three "community kids," but I think he and I are learning just as much as, if not more than, the family of the child with Autism! I'm very thankful for our new friends and this special playtime experience. Have you ever heard of "emotionally regulating" your child? Yes, they have words for it, lol!

Gavin had his first dentist appointment and cleaning. He did awesome and received a good report. He sat very still and didn't bite the hygienist. G was very proud of his balloon and seems to be more willing to brush his teeth now. The painful part was the $187.00 bill. Who knew a three-year-old's teeth cleaning and eval would cost so much? Still waiting for the insurance reimbursement. TD doesn't think it's coming. Anyone work for Humana?

I was once again a consigner at the One Week Boutique, which is always a huge production, and I am proud to report that I did not go shopping this time. Huge accomplishment for me, I promise.

With Spring now here, braving warm weather and even the pollen, we have been enjoying a lot of time outside. We took a way overdue trip to St. Pete. I can't express how nice it was to see our grandpa and grandma, aunts, uncles, big and little cousins! Pop Poucher, you look good. Gavin and I have made several trips to the Tallahassee Jr. Museum to meet with friends and see our native zoo animals. They have huge dinosaurs made out of car parts right now on display, which we think are really super cool. Our entire family really enjoyed walking and running in the Shamrock Scurry at our church, Killearn United Methodist, to raise funds for missions. Gavin received his first medal for “winning the race!” Adorable. I actually have a blog post of photos I will put up one day :) It was a lot of fun. The St. Marks Lighthouse is really lovely this time of year. Our first trip down with my dad and mom was perfect. Gavin caught some little fish, “fast yellow and purple striped fish” according to him, and swam in the water. We took a nice, long nature hike down the Cedar Point Trail and observed what appeared to be Battle O' Fiddler Crab. That was a first for me. Our second trip to the lighthouse was cut short by biting flies. They were everywhere. It was awful. We did have a nice picnic with TD's family down at the San Marcos Fort in St. Marks though, which made up for the lighthouse mishap.

Jacob started back at Healthy Solutions, having monthly cranial sacral therapy. We are so happy Mrs. Bunny has recovered from her surgery and is doing so well! Jacob is also still going weekly to Progressive Pediatric to see Judy for OT, meeting with his math tutor on Tuesdays, working with Nana in English on Mondays and hanging out with the Lighthouse Big Bend group on Thursdays.

Brie had her open house at Leon High School and picked her schedule for next year. I am very proud that my fourteen-year-old daughter will be starting 9th grade with five high school credits behind her! That is almost a full year of high school.

Brie and Jacob both brought home good report cards last week and they are getting ready for the oh-so-fun FCAT next week. I hate it for them... and for all you teachers, too. Blah.

Speaking of school… The kids had a great Spring Break away from it! Dana and Gina treated us to four days in St. Augustine, FL. We hit all the tourist spots, the Old Jail, Fountain of Youth, Old Town Trolley, Fort Castillo de San Marcos, St. George Street, and the Oldest Wooden School. We ate at several yummy restaurants, stayed in the beautiful Hampton Inn Villano Beach, the guys tried to surf fish (ha!) and we spent two gorgeous days at Anastasia Island State Park and Beach. Gramma and Pop took Jacob and Brie to Ripley's and TD and I had a quiet afternoon with Gavin. One of my favorite things was the St. Augustine Lighthouse. The most magnificent view of St. Augustine and surrounding areas is revealed after climbing the 219 stairs to the top of the working lighthouse. It was extremely exciting, very scary, and absolutely awesome! I loved our entire trip, it was amazing... and everyone was happy for four whole days!! Can't beat that.

Another proud mama moment - Jacob finished his rank advancement requirements for Star Rank. He passed his Scoutmaster Review and his Board of Review. I am very proud we now have a Star Scout! He will be working on Life and then on Eagle rank. Almost there... the prize is in sight!!

This past Holy week was very meaningful to me. I was able to attend all but one of the Lenten season services. During Holy week we had a lot of reasons to be on the church grounds. I really enjoyed Palm Sunday service and my MOPS meeting on Wednesday. Gavin's Easter Chapel program was precious. Gavin sang and signed and was adorable on stage. TD and I had fun at his Pre-K egg hunt and our family went to the family "Egg-sperience." I attended my first Maun day Thursday service and Easter service was the icing on the cake. He is risen! The Saturday of Easter weekend I ran in a 5K to raise funds for the FSU Autism Institute and raise awareness for Autism. We had a wonderful Easter dinner with our kids and parents and Gavin did an egg hunt at home and with friends. I was happy to observe Lent this year and finish a 40 day devotional. I'm a continuous work in progress. Thank goodness God likes that.

Before I start writing about the recent medical going on’s, I just want to write what we’ve got planned for the foreseeable future...

I'm really looking forward to Gavin's big boy three-year-old birthday next week. Our baby is going to be three! Wow! Where does the time go? Gavin amazes me every single day with his unique personality, how incredibly smart he is and his passion for life (dogged determination and perseverance fit in too, but often these tip the scales between being amazed and being completely infuriated). (Um, Can you tell TD added that during his editing of my blog?  My sentenced ended at passion for life and I would of just said Gavin is awesome, but drives me nuts sometimes, lol)  He is the center joy of our home and I am so thankful for him. My beautiful Brie's 14th birthday is next month. I don't know how that happened, but she has really grown into a young lady that I am so very proud to say I had a part in raising. Wish I could slow time down... her middle school graduation and dance recital are in May, too. In a few weeks I am looking forward to my Easter finches starting a family.  TD got me what we thought was Leonard and Penny, but turned out to be Leonard and Sheldon.  The two boys were getting along great building nests and singing to each other, but we decided to go for our original plan and I added a new finch, hoping it is a Penny.  We will be waiting to see what happens with our two boys and hopefully our little girl bird over the next few weeks.  Gavin and I are really enjoying watching them and taking care of them. We are all looking forward to a family trip to PC Beach so the big boys can go to deep sea fishing and, well, it is yet to be decided what the girls and Gavin will do. I'm sure Gina will come up with something good. She always does. I can't wait for summer break to have more time with my kids without the stress of school. I LOVE summer!! Oh! Did I mention TD is finally turning 30!?! Woohoo!

Ok onto the mostly medical stuff....Our first stop on our way to Orlando on Monday was at Jacob's orthodontist office to have his wires and metal brackets taken off. This is the routine. Off with the braces, MRI’s and testing, on with the braces. We got there (on time, nonetheless) to find that the office was closed for the day. WHAT?! Jacob can't have an MRI with his braces on! After a very loud, “UGH,” I called the office's emergency number. I was so happy to hear Suzette's voice on the other end of my call. Suzette is Jacob's favorite tech and is close friends with Jacob's aunt and uncle. Suzette came right in and took the metal out of Jacob's mouth so we could be on our way. Another person in our world I am very thankful for. Evidently, the office staff neglected to contact us the Thursday before when they decided to close the office to observe the Easter weekend. Whatever - it worked out.

The four hour drive to Arnold Palmer Children's Hospital was broken up by a few stops. I stopped to take pictures of the boys in the wildflowers. Jacob did not want to get out on the side of I-10 to have his picture taken with wildflowers. He said they are all around his dad's in Georgia, huffing about my persistence. He ultimately got out on the side of I-10 with me and even led Gavin and me through the high grass, just in case there were snakes. After all, he had his big ol’ Georgia boots on. I love the few photos I got. The sun was really bright, but the flowers were still very lovely. We had a picnic in Ocala and made it to Orlando in plenty of time to check into the Ronald McDonald House and get to hematology and oncology clinic by 3:30 for Jacob's labs.

Jacob had his labs drawn and we were off to find dinner before his 6:00 pm, three hour MRI of brain, cervical and lumbar spine. Due to the fact that Jacob's MRI was scheduled late and was so long, the MRI tech wanted to put an IV in Jacob's arm so they wouldn't have to wait for an RN to come down to push his contrast and flush his port. I said no, that we wanted to use Jacob's already-accessed port and we didn't mind the wait. That's what Jacob's port is for, so he doesn't have to endure IV access. Jacob really wanted Zaxby's or Cracker Barrel, neither of which I could find without having to get back on I-4, which was NOT happening. We drove down the main strip and decided on Chik-fil-a. After getting on the scale and seeing that he was only weighing 119 lbs, Jacob felt like it was ok to step up his food intake. He ate two chicken sandwiches, fries, fruit, a coke and a chocolate milkshake. We spent the next 90 minutes eating and watching Gavin play in the play area. Yes, I allowed Gavin to climb in the tube, slide down the slide and play with the wall games at a very busy and germ-infested Chik-fil-a. It was my first rodeo and Gavin loved it. He met a little girl who was almost four named Jalynn. She climbed like a monkey and showed Gavin the ropes. It was a much needed fun play time for Gavin. (TD was very proud of me)

Back at the hospital I got aggravated when I was told registration was closed and I had to request to be seen at the main entrance and wait for a rep to be called and see us. I wish MRI had told me this was the after-hours procedure when I stopped and checked on Jacob's appointment at 4:00 before dinner. Regardless, it didn't take too long and we were back in MRI waiting for Jacob's scans. We were taken to a room in the back this time that had toys, a tv and a play area for Gavin to eat. For those of you who don't know Gavin well, he doesn't like chicken nuggets or french fries. He ate a kids cone, but hadn't eaten dinner. I brought him a turkey sandwich and yogurt from home and that is what he ate for dinner. Anyway, Jacob's MRI started around 6:30 and they were really great about coming and telling me how Jacob was doing. He watched Zookeeper with Kevin James and thought it was hilarious and a few Sponge Bob episodes. Jacob had complained of headache and sinus pressure before going into radiology, so I was happy to hear the Tylenol he took had him feeling better when he was finished up. Our tech walked us to the parking garage through the kids 24 hour ER... whoa, hope we never have to wait in there! We were finally on our way to bed.

Our room at the RMH was very nice with a big queen Tempur-Pedic bed and a flat screen tv on the wall. First time having a tv in our room and being on the first floor. By the time everyone got settled in, took baths and looked through their prizes it was midnight. Oh, and have you ever heard of Joy Jars? An inspiring story, they were a little girl named Jessie's dream as a way to bring joy to sick kids. A little excerpt:

"During 2011, Jessie was able to fill over 3,000 JoyJars™ for kids. Her wish was to send one to every courageous kid in America, which is one of the goals of her foundation. As of March 2012 close to 10,000 JoyJars™ have been stuffed and sent to courageous kids."

Jessie has since moved on to heaven, but her dream still goes on through these special jars. Jacob and Gavin are blessed to be two of the courageous kids she wanted to reach and each have one of their own jars now. Jacob looked like a kid on his birthday going though his jar. Inside, Jacob's favorite items were 2012 MLB baseball cards, a hex bug, a Disney Goofy and a baseball wallet. Before Jacob had even finished looking through the jar he had called TD to tell him about his baseball cards. Jacob and Brie have a close cousin who is a pediatric brain cancer survivor, still recovering from a grueling year of chemo and radiation. Brie has been following Jessie's Never Ever Give Up (NEGU) campaign on Facebook and Jessie's blog. Brie was very happy when Gavin gave her his Never Ever Give Up bracelet from his Joy Jar. Another amazing program that has touched our family in a special way.

Jacob's clinic appointment wasn't until 10:00 am Tuesday, but since he had to do fasting labs, we chose to go over around 8:30, after their nursing meeting, so Jac could have his labs done and still have time to eat breakfast before his clinic appointment with Dr. Smith and crew.

Jacob was taken right back for his fasting labs, had his blood drawn and was de-accessed and off to breakfast. I was disappointed in our breakfast, but the Starbucks coffee made up for it. The first person we saw at clinic was Mrs. Moe, one of the nurses who is working with Dr. Smith's group now. She did an intake, took blood pressure and went over the labs that were back. All of Jacob's labs looked good other than his protein in his urine, still spilling protein from his kidneys with no improvement since November. Because of other levels, which were good (I don't remember which ones), the spilling of protein is ok at this time and they opted to watch it. They attribute it to the Avastin still. We were also told that Jacob's delayed healing from his January surgery is most likely from the Avastin, a little factoid that came later in our appointment.

Next, Michelle, our lovely social worker, came in to visit with us. I love talking with Michelle. She can always manage to get you to talk about anything and everything without even realizing you’re doing it until it is 20 minutes later and you have rehashed the last six months with her! So refreshing! Dr. Smith gave us big hugs and told us she was off to review the films with her radiologist. I guess they aren’t films any more, but you get the idea. Hillary came in and went over all the information about the new drug Jacob will be taking.

Jacob's new "chemo" is called Afinitor, also known as Everolimus or RAD001. It is being used to treat brain tumors in patients with Tuberous Sclerosis and certain renal cancers. It is just now beginning to be used to treat NF2 tumors. We’re hoping, and wishing, and praying it will slow, stop and/or shrink any (or all) of Jacob's tumors. It is an oral drug taken daily. I have been asked several times what the possible side effects are… All of the following side effects were discussed with us and we’re hoping to not see any of them!

"AFINITOR can cause serious side effects including lung or breathing problems, infections, and kidney failure, which can lead to death. Mouth ulcers and mouth sores are common side effects, occurring in 86% of SEGA patients taking AFINITOR. AFINITOR can affect blood cell counts, kidney and liver function, and blood sugar and cholesterol levels. Regular blood tests should be performed before starting AFINITOR and as needed during treatment to check blood cell count, kidney and liver function, blood sugar levels and how much AFINITOR is in their blood."

After learning about the drug and signing several consent forms, Dr. Smith came in and went over Jacob's scans with us. All of Jacob's tumors appear to be the same as from the January MRI and are considered stable. I asked Dr. Smith if she would review the pictures with Jacob. Jacob was surprised to see that I wasn't exaggerating about the size and severity of his C7 tumor. He told me later that he now understands why I don't want him jumping on the trampoline, riding the dune-buggy, or getting on roller coasters. Dr. Smith answered all of our questions and said she wants to see Jacob in a month. Jacob has an appointment to return to clinic on May 8th for a neuro exam and labs. We were sent home with three prescriptions. The Afinitor pills come in 5 mg and 2.5 mg. Jacob is going to start with 7.5 mg a day (a 5mg & 2.5 mg pill) and has to take it at the same time each day on an empty stomach, one hour before eating or two hours after. Afinitor does not tend to make you sick right away, so taking it at night is not a must. On Saturday and Sunday Jacob will take septra, an antibiotic, twice a day to prevent pneumonia and mucus infections that can commonly arise while on Afinitor. Because of Jacob's seizure medicine, his blood metabolizes things faster. His Afinitor dose will be increased next month to 10 mg a day if he tolerates it well. Jacob is going to have to watch his cholesterol, fat and sugar intake. He can have fatty food and junk, but they need to be balanced with really good things like green leafy foods, veggies, oatmeal... all the stuff he doesn't like. This should be fun.

So here we are on Friday, waiting on CVS to call me and say, "Come get the goods!" When I dropped off the scripts Tuesday evening, the pharmacist had never heard of the drug and wasn't sure if she could get it. She was able to order it and it was supposed to be here today. The 5mgs have come in, but the 2.5 mgs will be in tomorrow. So tomorrow Jacob will start a new leg of his NF2 journey. With this new drug comes new hope!! Please pray for successful healing and a positive reaction to this new drug.

Will keep you all updated.

Thank you for reading!!

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