Monday, February 2, 2015

I decided to open my blog today. 

I was surprised that our journey hadn't been updated since June 2014.  I write posts and share pictures on Facebook frequently, but I love this blog, and I've seriously neglected it!

It was hard to get past the unfinished post from late August, attempting to share my daddy’s journey from heart surgery to death.  Everything still reminds me of him, and that he isn't here.  As if I needed that reminder that I miss him so much.  Maybe one day I can finish the story, and maybe I could even write a story about him and not about his death.  Today, however, is not that day.  I can’t even get through this paragraph without the tears flowing, without the painful heartbreak his loss brings me.  He was my person, my most favorite in this world.  The one and only person that loved me unconditionally for all 39 of my years, even when I was hard to love.  He loved me and was always there for me, no matter what.  I’m told it will get easier.  Not to accept his loss, but to focus on his life, the great man that he was.  I hope that day comes.

So there’s that.  In the midst of that terrible memory, however, there have been many other significant events that have taken place since my last post.  Jacob started chemotherapy again, began his senior year, and completed his Eagle Scout rank.  Jacob’s Eagle Scout project was awarded the Suwannee River Area Council’s 2014 Eagle Scout Project of the Year award, which is such a huge accomplishment for him!  Brie is now a junior at Leon, has a great job at Target, and is driving!!  TD accepted another promotion, moving back to his first career “home” in Finance and Accounting, started running faithfully, and will join me in welcoming a new baby boy, Grady, come August 2015!  Along with our new pregnancy, I completed my 10 month, 200 hour Yoga Teacher Training Certification and have had the privilege of teaching yoga at Badass Fitness and Journeys in Yoga over the past few months.  We also moved and have a new-to-us home in our most beloved area of Tallahassee.  

It seems like so long ago, but I guess it happened since the last post, too!  Gavin started Kindergarten!  Oh my goodness, with a bang!  We love his school (Roberts Elementary), his teacher is fantastic and we have already been on two field trips.  In October, we took a trip to the Pumpkin Farm in Gadsden County, and last month we enjoyed the play “Cinderella” at the Young Actors Theater.  G’s first report cards have been all “A’s” (which makes Daddy proud), he’s earned 5 Toe Tokens in PE (which makes Gavin and Jacob proud) and he’s brought home some pretty impressive artwork (which makes Mommy and Brie-Brie proud)! 
Gavin was tested and accepted into gifted and began his first gifted classes in January.  Gifted is held at his school and he goes every day for an hour or so.  He seems to love it so far, and Daddy couldn’t be more excited for him!  Gavin easily makes friends and although his work skills are always rated excellent, his talking gets him into a bit of trouble (like his mommy J).  He even called himself a “chatterbox” at dinner last week.  Those words never came from my mouth!

As for sports, G is still in Truesdell’s Rocket man gymnastics three days a week, is currently playing soccer on the City of Tallahassee Roberts Strikers and made his first two goals this past Saturday, and will start Atom League Baseball at the end of next month.  His favorite activity is still to RUN!  I was a proud mommy watching him finish his first swim-run in July for the TTY.  He ran the Miller Madness Cross Country 3K in October and raised a lot of money and even earned some prizes for his school’s Boosterthon, running all 36 laps.  On January 24th, Gavin took 2nd place in the 1 mile race for his age group (0-6) at the Trent Trot 5K and 1 mile.  The run was held at his school and raised funds for Trent’s Childhood Cancer Foundation.  In the afternoon you can always find Gavin and Jacob in the front yard playing football.  G is a beast throwing and catching the football, but I do not want him to play such a rough sport.  No judgment, please.  I just can’t handle it!  

Our Doodlebug isn't only smart and athletic, but also funny and sweet.  Just this morning I found my tooth brush hidden in my jewelry box, and I can see him pausing at school, giggling to himself, thinking that I may be going all day with fuzzy teeth!  Yes, I just used daddy’s tooth brush if you were wondering J!  My other treasure was hid well, on my nightstand.  I discovered an ancient parchment (a sticky note) that says, “I love you with all my heart,” compliments of Gavin.  He frequently puts his head on my belly and says, “I can’t wait for our baby to come.” This week he is now calling baby by name.  Don’t get me wrong, he can be too rough, choose not to listen, and gets super grumpy, but we love all of those things about him, too.  The little person that he is growing into leaves us feeling very proud and grateful.  Gavin is the most amazing child, the sunshine in our lives. 

Obviously Gavin was the best subject to start my writing again!  We’ll end this as one of those to-be-continued stories…

We loved having family visit in January and look forward to even more company now that we have a house that can actually sit a few adults!  We have lots of Spring plans, including building a swing arbor and expanding our garden, continuing (more like finishing) some home improvements, and taking Gavin to Sea World for his birthday.  There will be plenty to write about once the temperature rises!

As always, thank you for reading and following our family’s journey! 

A few photos from January 2015!!

Thursday, June 12, 2014

Jacob, G and I made it to Orlando today. Brie was supposed to come too, but she has her first job interview tomorrow!! I'm so excited for her. Good luck to my beautiful Brie!!

After a terrifying drive in the pouring rain down I-75, the Turnpike and the 408 (honey my windshield wiper motor needs to be evaluated, third gear should go faster) we found a spot in the parking garage and went to Peds Oncology Clinic. We usually park at the RMH and walk over to Arnold Palmer, but it was raining and the house had called to tell us they were full that morning. They were checking to see if the other Ronald McDonald House at Florida Hospital had any rooms. Clinic should have been quick and easy, but I forgot Jacob's numbing cream and the nurse had to request his labels three times for his blood tubes. Tick tock. Then Jacob and I argued about weather or not his port should be deaccessed after his MRI contrast. I'm happy to report I won. It is safer for sterile reasons for him to stay accessed until he receives his chemo tomorrow and a lot less work, supplies and waste. He's always left it accessed. I'm not sure what the deal was today, but we worked it out. After labs Jacob was scheduled to have his 3 hour brain and spine MRI. I thought it was cool that I was able to do pre registration via the phone yesterday. I was told I would only need to sign in today. Lies! Supposedly my intake was incomplete and we waited 30 minutes to be seen at registration. While waiting Jacob's appointment time of 3:30 passed. I went to MRI and told them we were waiting and filled out the mandatory questioner I fill out every three months. Then I answered the same insurance information questions & gave them the same HMO card I do every time we are there for registration. Nothing has changed. I'm not sure why this aggravates me, a lot, but it does. So much that I find myself being snappy with the registration person and the boys. I mean how dare they call me and register Jacob and then make us do it all over again the next day. Yea, I need to get over it. Today I was mad because it made us late. Then when we did get checked in it took forever because they had to double check the orders. The brain MRI orders came from Dr. RK and the spine from Dr. Smith. They told me things like that disrupt the insurance. While we were waiting an emergency patient came in for imaging and Jacob had to wait for them to have their scan. Maybe it was all meant to be for that person to get the care they needed at that moment. That's the way I want to think about it. All of these hours in the car and clinic are hard on the boys too. Jacob stays sleepy and bored and Gavin is climbing the walls. 

Jacob said his MRI wasn't bad. He watched one of the Pirates of the Caribbean movies during his scans and we left the hospital around 7:40 pm, only an hour later than expected, which in reality is really not long. We've waited up to 5 hours before even being seen. 8 hours at Shands one time. That was awful. MRI scans every 3-6 months for the last 15 years I'd love one to get the easy button and maybe there's been one and I just don't remember. Any who.   

While waiting I was happy to get a call that our normal RMH did have a room for us after all. So here we are, snuggled in and as I lay here & listen to the boys snoring I'm worrying about results and things to come. MRI review and chemo in the morning. 

Opening myself and asking for my boys to feel God's peace and understanding...please bring it on!!! 

PS - my daddy's internal echo yesterday showed a severe value leak and he's seeing a heart surgeon Tuesday, which also means his previously scheduled appointment to the hemotologist will have to be rescheduled. 

Praying praying!!! Keep on praying.

Tuesday, June 10, 2014

Family update...

The Legislative Session is over, Gavin graduated VPK, Brie is now a Junior with honors, Jacob is almost a senior, and, hmmm... I'm another month older and I’ve watched Frozen more times than I'm willing to admit.

We are already one week into our official Summer.  One week down!  The kids and I had a fun week last week, swimming, going to the Jr. Museum, and playing at the park.  Gavin got in a few no-training-wheel bike laps (with my help), started back to gymnastics, conquered swimming 25 meters unsupported in the pool, and warmed his legs up at the GWTC Summer track series 40 yard dash and 100 meter sprint.  Brie is filling out job applications and Jacob is working on finishing up 11th grade math in summer school while also finishing his two remaining merit badges and his Eagle Scout project.

We are preparing for a move after eight years in the same house.  I don't believe in jinxes, so I will say it.  We close on our first home this Friday the 13th.   I am super excited, very stressed, and feeling very blessed.  All at once.  A roller coaster.  Our home is upside down, littered with boxes, and there is a list of things that need to be done at both houses before the end of June, but it's all temporary.  A means to a happy beginning of a new chapter of our lives!

So, inevitably, here comes more craziness.

My biggest concern right now is that my daddy continues to battle Chronic Lymphocytic Leukemia, which, depending on who you ask, may or may not be the correct diagnosis.  He's also suffering from a type of heart failure.  One of his heart valves isn’t functioning properly and his lungs are filling up with fluid.  This weekend he made his second trip to the ER, being admitted to the TMH Cardiac floor.  Finally, after a month of waiting for the doctors to get it together and provide the appropriate referrals, he is finally having a TEE (Trans-Esophageal Echocardiogram) in the morning.  This will determine the best treatment for his heart.  Please pray for him.  I miss him feeling good, laughing, and being active.  Watching him battle for his health is breaking my heart.  He should have another good 20 years!!  My daddy is a very private person, so I will go ahead and ask for his forgiveness for publicly posting this, but I believe in the power of prayer and I have amazing prayer warriors!  I have also been praying for daddy's brother who recently suffered a debilitating stroke and has advancing Alzheimer's.  I’ve never thought about the difficult emotions of watching parents get older and struggle with their health.  It’s heart-wrenching in a  completely different way than being with a suffering child.

After we make it through Tuesday, the kids and I leave for Orlando on Wednesday morning.  Jacob will have labs and his brain and spine MRI Wednesday afternoon.  It's been over a month since Jacob's radiation was complete (I guess doctors get vacations, too), but it's close enough. We were told that this MRI may show swelling in the radiated tumor, that this month may not be a good indication of the progress. We most likely won't have a full clear picture of the tumor’s reaction for several months.  On Thursday, Jacob will see Dr. Smith in clinic for an exam and review of his MRI.  If his labs are ok, he will start on the Avastin drug therapy.  It takes the pharmacy about an hour to make the drug and get it to the clinic.  Jacob's first infusion will then take about 90 minutes to complete.  After that they push saline and observe Jacob for reaction.  Really thankful that our HMO approved Jacob to receive the Avastin!  That was a concern.  It's an every-other-week infusion. Jacob did 8 months of it in 2011, but went off of it because he needed the adrenal gland mass removed.  Anyway, clinic will be long for us on Thursday. Praying for Jacob's comfort and NO side effects!! After clinic, Jacob will see Dr. Ramakrishna for his post-radiation check-up and MRI review.  Jacob had headaches and some tiredness, but overall has done really well.  That appointment isn't until 3:30 pm, so with our four hour drive home, we are looking at a really long, exhausting day.

Friday morning we close on our house and then I have Yoga Teacher Training all weekend.  We will be painting, cleaning, moving, and, now that I’m listing out activities and opening my brain, I realized that our week of VBS starts shortly as well!  Very excited about volunteering again this year, but, wow, crazy timing.

TD and I continue to do our best to run, walk, or keep active.  TD is feeling better most days.  He's down over 20 lbs, which is a huge accomplishment.  I am very proud of his hard work.   My training for the Diva Half started today.  I'm really looking forward to our very first MRTT convention that race weekend!  It will be EPIC!!  I'm trying to talk TD in to running his first half at Gasparilla in February.  If you see him, tell him how awesome it will be (to collect life insurance).   :)

Enough updating. I will keep you posted on how Jacob is doing and his results.

Thank you all for your prayers, support, and for keeping up with our journey.

Wednesday, April 30, 2014

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!!

Tuesday, April 15, 2014

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!!

Monday, April 7, 2014

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.

Wednesday, April 2, 2014