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.

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