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.

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

 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!!

The short version, for those of you who don't like my rambling - Jacob is doing great and he will get his treatment first thing tomorrow. We will then be home bound for the weekend

It's almost Friday and that makes me happy. "Happy Friday" will take on a whole new meaning tomorrow.

Jacob will have his 5th treatment at 8:30 in the morning and we will then pack up for the weekend and be Tally bound!! The sounding of that in my head brings tears to my eyes. Oh how I love Tallahassee.

I was told today we get to keep our room at the Ronald McDonald House, so that is great news!
I'm not sure what I expected this week. Sometimes it's hard to reflect back on what you thought might be after it has happened. It was an emotional rollercoaster for me for sure. Being away from my husband and other children is painfully hard, especially when they are having struggles of their own. I know it is hard for Jacob to be away too. He misses his family and friends and even school. I could go into great details about the moments of agony worrying about Jacob, or wanting to be at home or what I need to do, but instead I am going to be grateful.

I'm thankful that the treatments are short and Jacob is comfortable for the most part during radiation. I am thankful that his nurses are so nice and likeable. I am thankful that Jacob has only suffered mild nausea and his bouts of being tired and confused are short. I am thankful that today is the only day he has had head pain on the right side. I am thankful for the PRAYERS, messages, texts, calls and support we have received this week. I am thankful for the financial support we have received to help cover gas, food and a place to stay. I am thankful for our extended family and friends at home who are helping keep our family running smoothly while I am away. I am thankful for the laughter and smiles Jacob and I shared (The baseball game was AWESOME!!) and our moments of comfort. I am thankful for the 3 miles I was able to walk/run pain free. I am thankful for time on my mat with David Swenson (look that one up for fun:)). I am thankful for technology that keeps me in touch with Gavin and Brie, thankful for Motrin and for tissues. I am thankful for the lovely people in this home and Cancer Center who put things in perspective and remind me to remain humble. Tonight I am thankful to Olivia and Emily for visiting us and lifting my spirits! Lastly, even when I feel lost in the madness of this broken world God finds a way to show me all the beauty He has set in front of me and for that I am thankful.

Wishing all of you a weekend full of fun and family!

To all my mamas - I'm coming home and can't wait to see you Saturday!! Ready to run happy!!

Day 3 - 27 treatments to go. YES, we are counting. 

I'm feeling very tired from sleepless nights and all these zapping sounds are breaking my heart this morning, not that they weren't the past two days but this is our earliest appointment yet and I think all the machines are going off right now. The lobbies are full of bald adults trying to cover their cancer with wigs, hats, or scarves. This morning there is a beautiful woman sitting across from me, many years younger than me waiting on her time with the beam. Most of the women pass by in pink gowns, obviously covering their breasts for treatment. We've seen a few children but only in passing walking back and forth from the Cancer Center to the RMH. Even the house has mostly moms who have delivered their premature babies at Winnie Palmer and they are now in the PICU and will be for weeks. There are very few kids there, actually staying in the house, just their families. We have spent weeks at the NIHs Children's Inn but not more than a few days here and there at RMH in Gainesville or here. NIH is very different. 

I am happy to mark another day off our calendar. Jacob is doing really well. He's been a little tired and suffered moments of nausea but overall feels good. He will be out soon and we can start our day. I have a fun day planned! 

Thank you all for your prayers and support over the last few weeks.  Radiation has officially started. 

 

After a stressful and emotional goodbye Jacob and I made our way to Orlando Monday morning.  Jacob's first radiation was at 3:00 at the UF Health Cancer Center.  It was 2:45 pm when we scanned Jacob's bar code number on his ID card and proceeded to radiation waiting. We then met Bernadette and Sadira, who are the two nurses who will be taking care of Jacob during his time with Novalis.  They showed us to the table and got Jacob as comfortable as possible in his mask.  Since Jacob's iPhone playlist has some less than desirable music on it Bernadette turned on Pandora's Today's Country station for Jacob to listen to while on the table.  After readjusting Jacob a few times he was securely stabilized in his full face and head mask.  There is a huge tv screen in the room that shows imaging of Jacob's brain and skull.  It is used to make sure everything is lined up before the treatments start.  They also take x rays before every treatment.   I wished Jacob well and left the room with the nurses.  There is a small room in front of the radiation room where the nurses sit and operate things.  There are several monitors they watch Jacob on and are there if he needs them.  Jacob was calm and said he was only a little scared. Before his appointment he talked about spray painting his mask lime green (That made for a happy runners heart in me.) when his treatments are done to make it look cooler as a keepsake. I on the other hand fought back the flood of tears as I returned to the waiting room without him.  It's hard to believe we are at another unimaginable NF2 trial so close to the last one. These last few years have been relentless.  I am overwhelmed with the pain of wondering how much more Jacob can endure and the feelings of how unfair this journey has been.  Sitting in the waiting room I could hear the whistling sounds of the machine. The increments sounded roughly six seconds each time. I wasn't even sure it was Jacob's machine I could hear. The "beam on" lights were flashing on the machine door directly in front of me too but the sounds were not consistent, so it really could have been any of the machines.  There are at least four. It took roughly 20 minutes and the most work was removing Jacob's earrings and necklace and putting them back on. We made our appointments for the week and were all done.  Jacob's nurses were very nice.   

Our next stop was the Ronald McDonald House. I spoke with them before we left Tallahassee so I knew we had a room.  Phil, the day manager greeted us with everything ready. We were given a ground floor room with a desk and two beds. It is the best room here for us and I hope we will have it the entire six weeks, but when we leave on Fridays we will have to give it up if there are any families on the waiting list.  We will worry about that when it comes.  Tonight we are thankful for the help of so many and be glad one day of treatment is done! 

Jacob had some slight nausea and felt tired.  We have been told the side effects take time to manifest since the doses of radiation occur over time. 

I will update more later! 

 

Peace and Love,

Tammy

As we close out our spring break Jacob and I will pack up tonight and head to Orlando in the morning to start his radiation treatments. Jacob is not starting Avastin at this time, but I'm not sure why this changed. The ARNPs from both offices have asked the doctors to contact me regarding this but I haven't heard from them. I'm sure they have a good reason though. 

THANK YOU to those of you who have sent cards! I will be putting a big bulletin board in our room to hang Jacob's cards and words of encouragement up. 

If anyone wants to send him a note the address where we are staying is:

 Jacob Grimes

C/O  RMH at Arnold Palmer Medical Center

1630 Kuhl Avenue

Orlando FL, 32806

(I will know our room number tomorrow)

As for prayers, I will be praying for Jacob's comfort and as always his understanding and to be covered in God's peace. I will be praying for the radiation to stop the tumors growth without damaging Jacob's facial nerve or any other heathy brain tissue in the area. Please pray for no damage to his facial nerve that his surgeons worked so hard to preserve. Living with facial paralysis is so very difficult. 

I will be praying for our family at home too. It is so hard to be separated. 

Once again I am moved beyond words over the outpouring of kindness and support we are receiving. Jacob and our family is so thankful and blessed to be so deeply loved. 

I will let everyone know how tomorrow goes! 

 As most of you know, Jacob began his next battle with NF2this week.  It is confirmed that the right vestibular schwannoma (VS) has grown rapidly over the last three months and needs intervention before it returns to thealmost-4 cm size.   Dr. Brackmann at House in LA said that it is common to see the VS grow rapidly after partial removal, so what has happened to Jacob, although sad, has happened before to other NF2 patients.  

Yesterday, Jacob and I traveled back to Orlando to the Cancer Center at MD Anderson, which is actually now UF Healthcare.  It’s getting crazy.  I asked about the name changes and was told that the contract with MD Anderson in Texas has ended and UF Healthcare has taken over.  I’m assuming this means they have merged with UF Shands of Gainesville and Jacksonville.  This is of interest to me because MD Anderson’s reputation is known worldwide as a powerhouse in fighting cancer.  I did find this article if anyone else is interested.  The change was pretty much money-motivated, just like so much is in our society, but this change doesn’t affect Jacob, so I will move on.

http://articles.orlandosentinel.com/2013-12-16/business/os-orlando-health-md-anderson-uf-20131216_1_national-cancer-institute-cancer-care-md-anderson-cancer-center

Our first appointment was with Christina, Dr. Naren Ramakrishna’s nurse, for education and consent.  The recommended (and accepted) plan is for 30 treatments over a six week period.  Jacob will receive small doses of photon (fractioned) radiation from a machine namedNovalis each weekday for 6 weeks.  Christina went over the long list of really scary risks and side effects and answeredour questions.  I have the list if anyone wants to read it, but we are choosing not to think about that list and hold on to the fact that Novalis is going to stop this tumor!  We took a tour of the radiation area and got to meet Novalis.  Jacob thought it was cool that the machine knew his name.  The picture attached is almost identical to the room Jacob will be in for roughly 30 minutes at a time duringeach of his treatment days.  You can read about the machine and how it works on the website below.  

http://www.novalis-radiosurgery.com/patient-center/faqs/

Next, Jacob went into radiation simulation and had a CT scan and a mask made.  If you google “radiation mask” you will find many sites and videos of what they look like and how they are made.  With Jacob’s permission, I amattaching his photos from yesterday. The front and back of the plastic mesh were warmed and then placed around Jacob’s face and head.  A timer was set for cooling.  Jacob said it wasn’t very hot and he didn’t experience pain.  We love this mask because it replaces the halo, which, in my opinion, is barbaric.  The mask will support the head and keep it in place for his treatments.  It isn’t the most comfortable thing, but way better than skull screws!  The simulation nurses were very nice and one of them (Stephanie) was from Tallahassee.  It’s always fun to run into someone from our small city.  She is pregnant, due next month, so we may see her our first week, but not after.  

Dr. Ramakrishna came in briefly while Jacob was in the CT.  He shook my hand, smiling, and asked if I brought my other children with me, that he’d like to meet them.  Pleasant doctors bring me a lot of comfort.  He said he will start his planning next week and will let me know if anything changes.  He talked about how he does imagemapping using previous scans, allowing him to makeprojections that weigh in his decisions on how to treat tumors.  This tumor is touching Jacob’s brainstem, sothere’s that.  I also brought up Jacob’s facial nerve and how important preservation is to us since Dr. Ramakrishna is the one who writes the prescription that programs Novalis, directing where to send his beams.  Jacob was calm and only asked a few questions.  He did want to know if they were going to cut holes in his mask for his eyes and mouth.  We were told “sometimes” they do.  I was also told they would mark on Jacob’s mask to assist in the planning, but no marks were made.  I was wondering why they didn’t use contrast during the CT, but it may have been because Jacob had a MRI following the simulation appointment.  

For the last appointment of the day, we went over to Arnold Palmer Children’s Hospital for Jacob’s brain MRI.  We checked in at MRI at 3:00 and then went up to Dr. Smith’s clinic to have Jacob’s port accessed for the contrast.  While we were in clinic, we got to see Rachel, Dr. Smith’s ARNP, and talk to her about Avastin. I believe, if insurance approves it, Jacob will start Avastin the week of March 10th and will have infusions every other week.  Ourtentative radiation start date is March 24th.  Dr. Ramakrishna said waiting until after spring break is acceptable, but he doesn’t recommend we wait much longer.  Jacob’s MRI was a quick in comparison to his regular ones, around 55 minutes, so it was a breeze.  He chose Transformers to watch again and said it was just getting good when they turned it off.  We grabbed a quick dinner and headed home.  To Orlando and back home is a lot in one day, but Jacob almost always sleeps in the car and I couldn’t bear to spend another night away.  I was happy to wake up in my own bed this morning and excitedto kick off Gavin’s T-ball with our first practice of the season!

For those of you who have asked me how you can help…

Housing – I’ve applied for housing at the Ronald McDonald House for the six weeks we need to be there. I received the call today and was told that we should have a room.

Gavin and Brie – TD has session starting next week and lasting for the next 60 days, so I will be calling on our loved ones to help with Gavin and Brie for before and after school care.

Transportation – As of right now, we have one car, which is a problem when I have to be out of town.  If anyone has a third car they can live without for six weeks, we wouldreally appreciate borrowing it, or if you see a beater for sale that will hold a car seat, let me know.  

Other needs – There is a Publix and Super Target near the hospital, so gift cards to buy groceries while we are at the RMH will be helpful.  

If Jacob is well enough, we plan to return home on Fridays to spend the weekend with our families and return to Orlando on Mondays for treatment.  Gas cards for the travel back and forth would really be a huge help too.  

Lastly, and most importantly, are the prayers.  I continue to express our family’s gratitude to everyone who fights this fight with us with words that just don’t do it justice.  Thank you.

I received the call today from Dr. Ramakrishna's office that our insurance approved radiation in Orlando at UF Healthcare, which was MD Anderson. I don't know when they changed. 

This Friday we head back to Orlando. At 1:30 I will sign consents, at 2:30 Jacob will have his mask made, 3:30 we have check in at MRI over in Arnold Palmer Imaging and then at 4:30 Jacob will have the brain MRI to accompany the mask for radiation simulation. 

We will come home late Friday night. I can't bare another night away from TD and our kids. 

I did not ask how long simulation takes or the next steps. I did send an email asking for an update about starting Avastin. 

Jacob and I are home. We returned to Tallahassee around 7:00 pm last night.  Waking at 5:00 am to clean the room,driving from Orlando to Gainesville, spending four hours in eye clinic, grabbing a quick lunch and then spending another four hours at the Oculist makes for a long day.

 

I'm headed to Leon to see my beautiful Brie dance in the Black History Month assembly, so this will be short :).  Eye clinic with our neuro ophthalmologist, Dr. HazemSamy, is always worth the wait, no matter how dreadful it seems at the time. In the first few hours of our clinic time,Jacob had a vision screening, had photos taken of his optic nerve and completed his Goldman's fielding vision test.  All of this activity is done to monitor his left, and only, eye. The good news is that the nerve fibers on the photo haven't changed since both January and August of 2013 and the field of vision tests are the same.  The bad news is Jacob has suffered some vision loss since August.Since his decompression in 2009, his vision has changed from 20/50 in 2011 to 20/60 in 2012 and to 20/70 in 2013. Yesterday, it was 20/80 with no changes in appearance.Dr. Samy had Jacob redo his vision test with him and gave Jacob a long time to "scan and find" the letters.There were a few letters that Jacob read at 20/70, so that was promising. Jacob says he can see the letters but then loses them. It’s possible that the combination of the loss of his right balance nerve and the vestibular schwannomaon the left are affecting his vision.  Dr. Samy wants Jacob to return in four months to retake the tests and if there are any other changes, he will order an MRI at Shands of the orbit area. The fear is that when optic nerve tumors likethe ones Jacob has start to change, the vision is what changes first, before the other tests pick up the changes.  So we wait.

 

We also talked about radiation at the University of Pittsburgh if the tumor starts to change. Dr. Samy said he’s sent two patients to Shands UF in Jacksonville for proton radiation with stable results (so far), but he isn't as confident in it as he’d like to be yet. Hoping he will be by the time Jacob needs it, if in fact he does. I continue topray that Jacob never needs it!

 

The appointment at Guzman's Ocular went well.  They created a mold for a new prosthetic and started some of the lens coloring.  She worked on it for the entirety of the four hours we were there. It's a very impressive and laborious process. We will go back for more art work in a few weeks.

 

That's all for now.

 

Thank you all for your prayers and support. I'm trying to keep my head above water as I'm feeling less optimistic.My two hours of sobbing on the way home last night(while Jacob slept) may have helped slightly. I'm sure a few days back at home, prayer and a lot of love will make it easier to be ready to face what's next.

 

Quick summary-

Jacob and I are done with our consult with radiation oncology. 

We both liked Dr. Ramakrishna

very much. He took a lot of time with us and seems very smart and kind. 

He is ordering a more precise MRI and an appt to create a thermoplastic mask for Jacob. Both of these will be used to do radiation simulation. We won't know which radiation approach will be used, fractioned or one shot radio surgery until after the simulation is done. Dr. Ramakrishna seems very thorough and he does believe Jacob's right facial schwanomma can be treated with radiation. He will go over the risks more thoroughly after he has all the information and decides which type of radiation is best. There will be a risk to the facial nerve but we don't know how high that risk could be yet. 

Radio surgery aka cyber knife is a one shot deal and fractioned aka stereotactic is five treatments a week for five weeks. Jacob will be treated either way in Orlando. 

We also discussed Jacob starting Avastin. Dr. Ramakrishna will work with Dr. Smith on that. 

So now we wait for tests and pray on more hard decisions. 

Tomorrow Jacob has eye appointments at Shands, so there's that too. 

Here's a link I found that simplifies the planning stages. 

http://www.mayoclinic.org/condition/cancer/multimedia/radiation-therapy/SLS-20076358?s=1

Recent Results

I had hoped and prayed my next blog post could simply state, "Stable Results," but, unfortunately, that doesn't seem to be the case. I'm also writing this without all of the information, so if there are unanswered questions, just know that I am most likely wondering the same things. I was waiting to post until I heard from Dr. A, but since there's a hold up with that, I'm going to report with our preliminary findings. This is what we know. 

Jacob had surgery on his right vestibular schwanomma on October 29, 2013. During resection of the tumor, the surgeons removed Jacob's right hearing nerve and right balance nerve. A portion of the tumors was left to preserve his facial nerve function. Directly after surgery, the doctors believed they left about 2% of the tumor attached to the facial nerve. Given that the goal of the resection was to remove as much as possible without disrupting the facial nerve, the surgery was a success.

Jacob had a post-op MRI of his brain on recovery day 1. I saw the images. He gave Jacob a print out of the before and after images. I wouldn't call my initial reaction disappointment given that the surgery went so well and I was so thankful that they saved Jacob’s facial function, but I remember wishing they had removed more. He did have some mild facial weakness, and at that time we did not know if he would regain 100% function of the right side of his face. I had the thought that if he wasn’t going to fully recover, at least I could rest knowing they removed as much as possible. I can say now I’m glad he recovered fully.

Looking at the post op MRI I can remember a view where you couldn't even see the tumor, and when the image moved down, it looked similar to a thick crescent moon. Dr. A did say after the MRI review that 10-15% was a more accurate assessment of how much of the tumor was left. After 15 hours of surgery, I was just thankful that it was no longer the almost- 4cm brain tumor compressing Jacob's brainstem, and that Jacob was alive and doing well. Dr. A provided that photo mentioned above to Jacob with the before-and-after images side-by-side and very clear. You can see both the right and left VS’s in the side-by-side shots. The right side VS at that point, post-op day 1, was considerably smaller than the left VS. 

We knew going in to the surgery that there was a 60% chance of re-growth even if the entire nerve was removed. It's one of the reasons doctors don't think sacrificing the facial nerve is necessary. We knew it could grow back. 

Fast forward almost exactly 3 months, Jacob had an MRI at home in Tallahassee on January 27, 2014. I received copies of the images, burnt them on CDs and sent them to Dr. A, Dr. Brackmann and Dr. Pincus. I sent emails informing each of the doctors that the scans were coming. 

This past Monday, I went to Radiology and Associates and picked up a copy of the written reading of the MRI. There was mention of Jacob's spinal cord bulging at C1 and notes of changes in a huge, 7 cm para-spinal tumor Jacob has in his lower back. Both concerning, but neither as shocking as the measurements of his right VS. His left side had very slight changes (Thank you, Lord!), but his right side was measuring, at its largest length, 2.6 cm. I tried not to be alarmed. I imagined that it could be scar tissue, or maybe that it was the measurement of where the tumor is elongated onto the facial nerve. 

The next day, we went to see our neuro oncologist in Orlando, Dr. Smith, with scans in hand. Jacob sees her at least every six months, regardless of whether he's in treatment. We had intentions of talking with her about drug therapies for hearing preservation for Jacob's left ear. She did her exam and looked at Jacob's scans. I looked at Jacob's scans. I was very sad to see the right VS was now, once again, larger than the left. It had grown back to a rather large size in just a few months. Obviously, I'm not a doctor and I don't have skills in measuring volumetric tumor sizes, but by eyeballing the scans, I can say with near certainty that the right VS has at least doubled in size over the last 3 months. 

The NF2 community is telling me that this can't be right... I'm hoping very much that I am wrong. I remember in Summer 2011 we asked our medical team to look at a tumor that had not been scanned for several years near Jacob's adrenal gland. It was 5 mm when they first found it, years early. That Summer’s CT scan showed it had grown to be 5 cm. We decided to have it removed. Five months later, Jacob had a pre-op CT the day before surgery. The adrenal gland bed mass had doubled in size and was over 11 cm. Five months. It was also verified to be a schwannoma. Just saying. 

So, back to Tuesday. Our neuro-oncologist feels like Jacob should see a radiation oncologist. Starting a cycle of Avastin (chemo) is also in the plan to support possible radiation and maintain hearing. Jacob has an appointment in Orlando this coming Tuesday to meet with the radiation oncologist to see what, if anything, he can offer. The post-op scans from UVA are being sent to Dr. Smith and the new scans have been sent to Dr. A. I am waiting not- so-patiently to hear from them, and, hopefully, Dr. Brackmann, soon, too. I haven't even asked about the spine yet. 

That's all I have for now. Heavy hearts and occupied minds at our house this week. 

I do want to wish all of you a very Happy Valentine’s Day! Hallmark holiday or not, everyone could use a little reminder of how much they are loved! May all of your lives be filled with love!

Tammy