Wednesday, April 30, 2014

 I started to write a post yesterday but didn't get to finish.  I will start this afternoon’s entry with great news…  Jacob went back to school this morning and is feeling good!  He said he was a little tired today, but overall had a good day.  Praise God!  Jacob knows he has a lot of work to do and will be working through his summer, but he is prepared.  We keep talking about how sweet his graduation will be, knowing all the struggles he’s faced over his years at Leon High. 

Medically, we are in a waiting period.  Jacob will return to Arnold Palmer for a MRI in four weeks.  Dr. Ramakrishna informed us that it is very possible that the MRI results will look worse than pre-radiation due to swelling in the tumor and in the area of radiation.  We are watching Jacob for any signs of being irritated by brain swelling.  Headaches, nausea and dizziness are all side effects. Dr RK said that a MRI several months from now is what they will gauge the success on.  

Jacob had a hearing test and labs last week at Arnold Palmer to use as baselines for starting his Avastin chemotherapy when we return in four weeks.  This type of drug is given via IV and Jacob will go to Orlando for infusions every other week for an undetermined amount of time.   During this waiting period, my prayers will be filled with healing requests and the hopes of the radiation doing its job.  Unfortunately, we will also have to start thinking about what to do about the left side vestibular schwannoma that continues to grow.  This is very scary because it is Jacob’s hearing ear nerve.  Please pray for our guidance for that as well.  Along with catching up in school, Jacob will be returning to therapy for his balance and fine motor skills and working on his Eagle Scout project.  He is in need of a lot of prayers for these things as well.

 And my post from yesterday….   

 Tuesday, April 29, 2014

As I drove home from Orlando today, literally in a terrifying storm I had many thoughts.  I thought about the many NF2 storms of Jacob's life.  I can always find a way back to my memories of the early morning of February 25, 2000. Even though Jacob had four eye surgeries behind him at that time, we had no idea what his first grand mal seizure would tell us. I had no idea how my dreams for my son, and our lives, would be rewritten and changed forever.

After fourteen years, I am still learning and growing from each storm.  God may not take these trials from us, but He IS carrying us through them one at a time. My thoughts today weren't just about the sadness and pain of the storms, but also about how much love NF2 has bought into our lives and the most amazing people. 

When we were first told Jacob needed six weeks of radiation treatment so far from home, I wasn't sure how we would make it work, but I did know somehow it would happen.  My heart is so full of gratitude; it’s hard to even comprehend the love we have been shown during these last two NF2 trials, Jacob’s brain surgery in October 2013 and during these 27 treatments of radiation.  Our family has had EVERYTHING we have needed, from gas cards, to groceries and dinners, to child care for our kids and even things we didn't “need” that made the days brighter.  We received prayers, kind words, and beautiful cards.  Team Jacob G has been amazing, absolutely amazing.

I apologize for not sending everyone individual thank you’s.  I will one day get them finished, but I didn't want another day to go by without expressing our gratitude. 

Thank you Boy Scout Troop 23 and Woodmen of the World!  Thank you to my beautiful MOPS group, KUMC, KKP, and Timberlane Church of Christ.   Thank you to the women who make up Moms RUN This Town and BA Fitness. Thank you to our beautiful St. Pete family and to my daddy and mama here at home. Thank you to old friends who I haven't seen in 20 years and to my online friends who I feel like I've known a lifetime. Thank you to my Origami Owl family and a 31 Gifts sisterhood I don't even know. Thank you to our NF2 family at home and far away.  Thank you to those of you who don’t know us, but still helped us.  Thank you to everyone who reached out to us during these hard times.  We are so blessed to be so deeply loved.  Thank you!!

I'm happy to write that our room at the Ronald McDonald House is clean and ready for Pop (TD's dad) to come and spend a few days with Jacob.  Gavin's 5th birthday is Thursday.  It's hard to believe he is already 5 years old and I want to be there when he wakes up and remissness over one of the best days of my life and be thankful. I will be heading home after Jacob's radiation and doctors appt in the morning to be in Tally in time to take G to his well check and we are not doing shots!! No shots this time.  We will make another visit for that if something is needed.  Anyway. Pop will bring Jacob home Friday morning.

Jacob continues to tolerate the radiation well.  He is down to 10 treatments left as of today.  Now that we are more than half way through I am finding myself praying for the radiation to be working on the tumor and not hurting the surrounding tissue. I go from thoughts that it must work to what if it doesn't work... My (OUR) prayers of comfort and peace for Jacob are being answered for sure.  He said he was a little sick this weekend while visiting his dad, but he still managed to get to church and enjoy some time at the pool. He's playing X Box right now so he's not too bad off at the moment.  His scalp burns haven't gotten any worse. Jacob is really good at pushing through the big stuff.  He never ceases to impress and amaze me, but don't tell him I said that :) He did labs last week, but since I haven't heard from them I am assuming everything is normal.  I will ask tomorrow what's next and when MRIs will be done after treatment.

Everyone is excited about celebrating Gavin on Saturday and Jesus on Sunday. I have the Red Shoe Run for the Ronald McDonald House, G has t ball and his party and then Easter Celebration!  He is Risen.  I never get tired of repeating that in my head.  If you're near KUMC on Sunday I hope you can hear the congregation shouting it as loud as we can.  I love that tradition!

Hope everyone is well and your week is starting off happy!!

Peace and Love from Orlando!!

Today marks the start of week 3 of photon radiation treatments.

I didn't expect the grief I felt walking into the Ronald McDonald House this afternoon. Here we are again, separated from our loved ones to fight this never ending NF2 battle.

Last week Gavin really kept us busy and preoccupied. Jacob and Gavin spent a lot of time playing and horsing around.  Our room seems sadly quite and still.  It was hard to leave G this morning at school but he was happy and that's what matters. It helps to know that Gavin's has a great line up of play dates this week. I'm so thankful for the help of our amazing friends.We are truly blessed with so many loving people in our lives.

Jacob continues to feel pretty good as long as he can nap. We had a good weekend at home.  Being apart for long periods of time, once again reminds us of how precious our time together is and how much we take for granted.  On Saturday morning Gavin had his first T Ball game.  He is doing so awesome! He's got a killer swing and his throwing and catching is very impressive.  Can you tell I am a proud mommy?  His coach is to die for handsome too so I love going to the diamond :) After leaving the baseball field we ate a yummy breakfast and ventured out to pick strawberries at Orchard Pond Organics. This was my first time picking strawberries and my bag filled up quick.  I loved seeing all the little ones, with the red juice covered faces, enjoying some strawberries right on site...including my husband, lol.  On Sunday, we all made it to church together. I always love being in church, but it is especially wonderful with all of my family.  Even when Jacob is sleeping I am still so happy we are all there. It doesn't happen often, that all five of us can get there at once, but we did this weekend. It was, as always a moving message and I am happy to report Jacob did not fall asleep this time. I love our church so much. God is good! Sunday evening we enjoyed an evening at the new downtown Cascades Park. When they started construction forever ago I could not imagine what it would look like. It's really beautiful. There were families being active together, runners, walkers, cyclists, picnics going on and baby ducks. I saw kids laughing and being silly with each other and their families.  We did three laps, which is three miles and then watched Gavin play in the Discovery play area (slide, sand and mud) and then took him to the splash pad, aka the Imagination Fountain.  At 8:00 pm the fountain is turned off, cleared of kiddos and then they have a really cool lights and water show.  If you haven't seen it, pop over to my Facebook. I uploaded a short video.  We had a lot of fun!   Being outside, active and part of our community makes for a happy heart. Literally.  I even had a quick passing moment with a female runner I didn't know. TD thought it was hilarious, but it meant a lot to me.  If you travel the mile route around the park more than once you are bound to pass the same people multiple times. As we passed two women runners the second time I said, "looking good ladies!" With no response for them, TD was thinking how silly I am....but the next time she passed us, as I was pushing Gavin at a slow jog at an incline she said to me, "You're awesome!" Yep, she heard me the first time and returned the encouragement! Little happy moments, I want to recognized and appreciate them all.

Jacob and I had an uneventful drive down.  The weather in Orlando, unlike the tornado warnings at home in Tallahassee, is windy, hot and sunny.  Jacob had his radiation at 3:00.  We made our appointments for the week and had the nurses look at Jacob's burns that showed up late last week, his first outward physical signs of radiation.  His skin is sore, but doesn't really hurt unless you touch it or when I put lotion on it.  The irritation is especially bad where his scar is from his October brain surgery.  TD took him for a haircut Sunday so it is a bit easier to take care of the burned area now.  I guess his hair will fall out in those spots soon, but not sure when. His doctor will look at it on Wednesday when we see him.

I am hoping this week goes by quickly.  Jacob and I are SUPER excited and really looking forward to tomorrow night.  A very loving and giving family surprised us with Blue Man Group Show tickets at City Walk for Tuesday night.  EEKKK!! Can you hear the squealing of excitement coming through in my typing!?! I had hoped very much to do at least one cool thing with Jacob each week.  I think this show will cover that and then some!  So stay tuned to hear about that.

Random pics from RMH

Braves Baseball!!

We decided it was best for our family if G came with Jacob and me this week. Gavin didn't really understand what J was having done. Jacob's nurses showed G the Novalis and even let him "drive" it. It was really cool. For now radiation is invisible medicine that is treating one of Jacob's brain tumors...or brain boo boos.

Thank you!!!

It was so much fun to come back to Orlando and be welcomed with so much love via the mail!! Jacob's board brightens our room!! Receiving all of these messages of encouragement really keep Jacob's spirits lifted!!

Run Forest Run! Love Bubba Gumps!!

Central Florida Zoo Fun

Mid week two update....

Jacob is having a really good week considering.  Monday he didn't feel good and was having tummy pains, but by yesterday morning he was feeling better.  We talked about making better food choices when he's not with me and drinking more water.  Jacob has been taking naps frequently, because he is very tired, but other than that he is feeling fairly normal. 

We saw Dr. Ramakrishna today after radiation, for the first time since Jacob started his treatment.  He was on vacation last week and we saw a different doctor.  It is required for patients in treatment to see a doctor at least every five treatments.  Jacob was weighed and his blood pressure was taken, both normal.  Dr. Ramakrishna asked Jacob how he was feeling and told Jacob that if he has more frequent headaches or nausea he can prescribe a steroid like prednisone, which will take care of those side effects.  I asked him about the risk of facial nerve damage and according to him there is only a 3% chance of damage to the facial nerve long term.  Dr. Ramakrishna did say that there may be some temporary weakness over time, but if that does happen it shouldn't last more than a few months.  Before I could even ask him about Avastin he asked us if there was a plan for Jacob to start after treatment.  He explained to me why Dr. Smith and himself changed their minds and decided not to put Jacob on Avastin during the photon treatment and I totally get it.  PM me if you want me to explain.  Jacob asked him a few questions, like being able to be outside in the sun and Dr. RK (lets call him that to save some typing) said it was fine as long as Jacob keeps his scalp covered.  The appointment was very comfortable.  Gavin sat nicely and played Swampy, while Jacob talked about his spring break and showed Dr. RK photos.  We really like Dr. RK!  It was a good appointment.  Jacob will see him again next week on Wednesday.  We were nicely surprised too to find out that Jacob is scheduled for 27 treatments instead of 30!! That's three days early we will be heading home!! (I think:)) If things go as planned. 

I want to mention too that Jacob's nurses have been so cool with Gavin all week.  Even though the Cancer Center isn't just for kids they really go out of their way to make them comfortable.  I met a family yesterday with an 11 year old son, who originally lived in Bainbridge, GA and traveled to see Dr. Smith in Gainesville at Shands.  They moved to Celebration when the brain tumor group moved to Orlando.  They followed Dr. Smith like we did, but picked up and relocated their entire family. Their son was having his first radiation treatment yesterday.  He looks like he has been through chemo.  Gavin sat and chatted with him while he waited and my heart melted.  His mom and dad were so nice and his beautiful baby sister slept peacefully in her car seat.  The nurses had the Novalis room covered in Stars Wars stuff, because this little boy loves Star Wars. It was super cool and worth sharing about :). 

Other than radiation we enjoyed a pic nic in Delaney Park yesterday and a trip to City Walk to meet TD's parents and sister, who drove over from St. Pete to have dinner with us at Bubba Gumps Shrimp, which was delicious. Jacob and the kids enjoyed a game of miniature golf, while Pop and I watched. Today we visited the Central Florida Zoo in Sanford and had a very nice time.  It was a neat little zoo, that reminded me very much of our Jr. Museum at home, with more exotic animals.
Tomorrow we will be hanging out at the RMH.  I think we have had enough excitement for the week.  Gavin has definitely kept us on our toes.  I hope Jacob will get some more homework done. (Math - Jason :))  Much of what was sent home last week Jacob can't finish because the font is too small.  Guess he will have to work on that this weekend with his CC TV.  I will be washing clothes, organizing and prepping for our very early and long day Friday.  Jacob's radiation will be at 7:00 am and then we will hightail it to Gainesville for 10:00 am appointment at the ocularist.  It's a three hour appointment to have the art work started on Jacob's new prosthetic.  I'm excited to get two of the three appointments done, but I'm prepared for it to be a very tiring and stressful day! 
After that we will be Tally bound. 

I have posted a lot of photos on Facebook.  I will try to get some on my Learning to Make Lemonade Blog tonight. 

Thank you all for your continue love and support!! We are deeply moved by our amazing community!!  Team Jacob ROCKS!!