Thursday, March 27, 2014

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!!

Wednesday, March 26, 2014

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! 

Tuesday, March 25, 2014

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,

Sunday, March 23, 2014

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! 

Saturday, March 1, 2014

 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.  Im 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.

Our first appointment was with Christina, Dr. Naren Ramakrishnas 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.

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 wasnt very hot and he didnt 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 didnt 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  Ive 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.