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!!