Fred In My Head 2017

This weekend we were lucky enough to be able to go to Disney World!  The UF Proton center and Compassion Partners gave us tickets so we headed down to Orlando for the weekend!  We made some friends at the proton center that have annual passes and they came to be our tour guides!  This made our trip even more fun and they knew all the secrets to a great day at Disney!  Abby's favorite thing at Disney was the Safari at Animal Kingdom and the Lion King Show! Grandpa and Grandma are coming down this week to keep us company which we are very excited about!  We will be their tour guides and show them around all the amazing places we have found. Abby's treatment continues to go well and she is feeling OK.  Her cysts have grown a little bit again this week but nothing drastic.  She is finding that she gets tired more easily and is having more headaches.  This is all within what is to be expected though.  She is happy that she has not lost any ...

Abby is half done her treatment! 15 treatments down 15 to go!  She is doing well with limited side effects, some headaches, fatigue and nausea but nothing unexpected.  This weekend Abby and I are headed to Disney World!  We are looking forward to it and we have a guide!  Her father is going through Proton treatment too and she offered to be our guide.  They have annual tickets and her licence plate is Disney Dee - she is a die hard disney fan and knows all the secrets to a great Disney adventure!   They were also kind enough to book us into one of the Disney hotels so we will get extra magic hours!  We are heading down to Orlando tonight as soon as Abby is done her treatment today!

Well we just had such a great week!  Jerry and the rest of the kids came down to visit us in Florida.  It was so wonderful to be together as a family.  We had lots of fun and Abby was feeling well most of the week!   Is really is true that times flies when you are having fun!  Thanks to Compassion Partners and the UF Proton Center we were able to go to Universal Studios and Islands of Adventure as a family.  They provided free tickets for Abby and her immediate family as well as getting a universal assist pass.  This meant that Abby did not have to wait out in the heat for any rides or shows!  (And either did we!)  We rented her a wheelchair and she did great!  Lasted the whole day and we all had such a blast!  She did have a headache the morning of the second day but I think it was just from not drinking enough water.  Once she had breakfast she was good to go again!   We had perfect weather and the wee...

Just so you are aware this is an education filled post!  I was just going to post a photo of Abby's radiation pathways but then realized a little explanation may be needed.  So this is a picture of the radiation pathways for Abby.  This is hers specifically.  When I first saw it I was surprised how large it was then when I visualized those beams not stopping at the tumour but continuing through her whole brain I realized what a huge difference this will make to Abby and her brain.  The other great thing about it is the beams themselves are only a third of the complete dose where as in regular radiation therapy the beams are at full strength through the whole beam.  Proton beams have a burst of energy at the end. Proton therapy and the Bragg peak. A natural phenomenon in the way that protons move and release their energy - called the Bragg peak - is what makes proton radiation useful for cancer treatment. The Bragg peak is the burst of energy released by p...

Yesterday Abby woke up with a head ache and just not feeling well.  She is an early riser, I am not, so usually by the time I get up Abby is really hungry but yesterday when I got up I knew something was wrong when she didn't ask if we could go down for breakfast right away.  Besides her headache and just feeling extra tired she had a little bit of an upset tummy.  She had some medication and was feeling a little better by noon.  She had her weekly MRI at 1:45 and her therapy was scheduled for 3:15 but they were delayed so she didn't get in till 6:15.  It was a pretty laid back day. Abby's appointment today was not scheduled till 4:10.  This meant we had lots of time to head out to the beach before her appt.  It usually has been cloudy and rainy since we got here but today was the perfect beach day.  Abby hid under her umbrella most of the time but did get into the water to cool off.  She is not a fan of the waves, heat or hot sand and a...

Abby is doing great with her treatment so far!  4 days down 26 left to go.  The gantry ( the machine that does the treatment) has been having some problems this week so we have had to wait longer for her treatments.  Today was 3 hrs and yesterday was an hour and a half.  We were talking to a couple that has been here for 5 weeks already and they said this is a first and they are usually pretty good at sticking to the appt schedule We have been going to the YMCA almost every day.  The Ronald McDonald House  has a meal prepared almost every night and the food is delicious but it is a lot of fried foods, processed foods and pastas.  Each night they also serve desserts.  Always amazing but we definitely find we are needing the gym membership to counter the calories!  Luckily for us the RMH and the YMCA provide us with a free pass while we are here.  Abby likes the rowing machines and the bikes!  They also have a track that we can walk ...

Thursday was Abby's first day of treatment!  She was a little nervous but did really well.  She had an MRI before her first treatment and she will have a quick MRI each week to track the cysts.  Sometimes treatment makes the cysts enlarge and they just need to make sure that the whole tumour, cysts and all, stay within the treatment area.  If her cysts grow outside of the area they are treating they will have to recalibrate to include the new cyst growth.  After Abby's treatment we went to the family fun night that the proton center holds every second Thursday for families with pediatric patients.  They serve supper and have a fun activity.  This week they had a ceramic company come in and Abby got to paint her own plate.  It was really fun and was good to be able to visit with families that are going through the same treatments.   The proton center has lots of activities and tickets for attractions in and around Jacksonvil...

Sunday Jerry headed home so it is just the three of us now.  Abby starts her treatment Thursday so we wanted to have some more fun before that!  We were able to go to the Jacksonville Zoo and feed the giraffes!  It was pretty awesome.  The zoo here is small but awesome!  It was the perfect size for us and I suspect we will be heading back another day. We had great fun before it got too hot for Abby. Yesterday we went to the YMCA and went swimming.  The kids want to go everyday they enjoyed it so much! Abby had her first oncology appointment and we met the rest of our team.  They just wanted to prepare us for some of the things that could happen during treatment.  We will see them every two weeks but they are on call to us 24/7 Up to now it has been fairly easy to treat this like a vacation and we have had a lot of fun but this appointment kind of brought us back to reality!  I'm so thankful that we were able to have so much fun be...