Fred In My Head 2017

Abby had her first MRI since her radiation treatment and we found out yesterday that the most worrisome cyst has grown back.  This cyst sits close to Abby's fifth nerve which runs out to her left ear.  It is very deep at the bottom of the tumor and they could not remove it during the fist surgery because of this. They were able to pop it and it did not show up in the scans in June so they were hoping that it had been taken care of it . Our neurologist said it is about the same size as it was before surgery.  We were told in Florida that sometimes the cysts grow before the radiation causes them to shrink.  They will do a follow up MRI in 6-8 weeks unless Abby starts to show any adverse effects.  We will be watching for hearing changes, balance issues, facial numbness, and any new pain in or around her left ear or headaches on the left side.  Any of these symptoms will move up the MRI date.  They are booking her for another auditory test because of the g...

Just thought we should do a quick update on how Abby is doing since her radiation treatment. We were told to expect some fatigue to hit at the 6 week post treatment mark and it did - right on schedule.  Abby is still able to attend a full day of school but often needs a long nap when she gets home.  Sometimes she is too tired to go to her other activities but mostly she powers through.  We can tell when she gets tired as she gets very rosie cheeks and her left eyelid gets droopy.  Weekends she tends to need extra sleep.  Overall she is doing great!  She is working extra hard to catch up at school and is learning to play the clarinet in her first year of band.  Her weight gain has leveled off and she has actually dropped a few pounds thanks to her low glycemic diet.  We have even been able to add a few more carbs back in which makes it easier for her. Her first MRI post radiation is scheduled for the first week of December.  They have...

Well the title of this post says it all!  Abby completed her treatment on Saturday September 15 and was able to ring the chime in the lobby of the UF Proton Center.  Wednesday was her last patient lunch and she played "Somewhere Over the Rainbow" on her ukulele.  She brought the whole room to tears and got a standing ovation.  After lunch they took her graduation photo with the other patients that completed their treatment this week!  We have met so many wonderful people while going through this experience and cannot thank the other families, staff at the UF Proton Center and the Ronald McDonald House enough.   When we flew out of Jacksonville the temperature was 30 degrees and when we landed in Calgary it was 3 degrees!  Quite the difference but we are so happy to be home!  Abby was hoping that there would  be snow on the ground but I guess she will have to wait a little while for that! We have had quite the adventure!  A ...

What a week!  We have survived Irma and are so ready to come home!  We are adventured out!  After the storm the RMH ended up evacuating us to a hotel since we did not have power and we unable to get to our appointments since we were surrounded by water!  This means no car as it was flooded in ( dry but unable to get out of the parkade)  so we were relying on taxis.  The UF proton center was up and running Wednesday so we have been set back a few days.  Wednesday night Abby's appt was for 6:35pm but they were running 5 hrs behind.  This meant that her treatment was at 11:35pm.  The cab company only had 1 driver due to staff evacuating so we were sharing cabs with other proton patients.  The family we shared was supposed to be at 9:30 but due to the delay went in at 2:30am so we didn't get back to the hotel till 3:20am!  Late night, but they were able to get all the patients in which is what really matters!  We spent two nights i...

So this afternoon Sherri-Lynn and Abby were evacuated out of the Ronald McDonald House. The City of Jacksonville is unsure when they are able to get power restored to the area as the power lines are underwater and much of the neighborhood around the House still has a lot of water.  The St. Johns River is no longer over its banks, but the lower areas didn't really drain much today. The Ronald McDonald House has found a hotel that has power, not an easy job with all the evacuees from the south and other parts of Jacksonville. Apparently when you get about 4 blocks from the House it is dry. A lot of people still do not have power though.  The House staff were so apologetic.  They are staying to start cleaning up. Abby's treatment tomorrow will go on as scheduled since all is well at the proton center. This means her last day of treatment will be on Monday and they should be headed home by Friday. The had to haul their suitcases, food, and water down from the 3rd floor...

First things first - Sherri-Lynn and Abby are safe. They stayed at the Ronald McDonald House throughout the storm.  They heard a lot of wind and rain, and lost power early Tuesday morning. There is no water in the House, except for a little from the rain.  Water flooded into the neighborhood with the St. John's river rising several feet and flooding nearby houses and the downtown.  The city had expected water to rise a little more, which would have come into Ronald McDonald House, but it seems to have peaked with the high tide at about 2:00 pm Florida time.  The water has started to recede, but many homes and businesses have 2 or 3 feet of water in them and the city has been evacuating people with boats and fire trucks. Ronald McDonald House is in an evacuation area, but the House's foundation was built up before they started building, so water did not come in there, although it was getting close.  Sherri-Lynn parked the rental car on the 2nd storey of the p...

This morning we had a house meeting to discuss emergency plans for this weekend.  We are still good to stay at the RMH and they have everything ready for us.  We have been told to expect flooding in the streets but not of the house and loss of power but since we are on the same grid as the hospital we are in a priority zone which means power will be restored as soon as possible.  The path of Irma has changed and may change again but at this moment they are expecting it to pass to the west of us and downgrade to a category 2 before it hits.  Sunday night Monday morning is expected to be the worst and we are prepared. All appointments for treatment have been cancelled for Monday but they are making appointments for Tuesday.  This would mean that Abby's last treatment will be a week from today!  Only 5 treatments left including today.  Abby has done so well and has had minimal side effects from the treatment so far.  Some headaches, fatique, ups...

Well his weekend could bring a little bit of excitement!  Irma might be coming to visit!  We were told today that the Ronald McDonald House is evacuating all families except for international ones.  This means we get to stay, unless the city issues an evacuation for the zone we are in.  The area we are in is prone to flooding and is right on the river front.  The good news is that the house itself has not ever flooded so we should be safe and sound even if we are surrounded by water.  Our room is also on the third floor.  We are on the same power grid as the hospital which means if we loose power it is usually one of the first grids to be restored.  The house is stocked with all we need to ride out the storm.  The Proton center is running therapy as long as they can which means we will finish out the week and see about next week.  If we didn't have to stay for treatment we would go on a road trip north.  I've never been to Atlanta ...

Abby and Sherri-Lynn have been in Florida for over 5 weeks now.   I (Jerry) was fortunate to be able to go down with them the first week and then again with the other kids for the fourth week.   A big thank you to all the friends, family, and even strangers, who helped make it possible for us to be together as a family for a week.   It is very appreciated.  We have been very blessed by people's kindness and generosity over the past several months. We are hoping to be together again in just under 3 weeks if the treatments keep on track, although it looks like Hurricane Irma may poke its influence into the schedule.   The University of Florida Proton Radiation Therapy Center does not have snow days like we do here, but they do have hurricane days, this is according to Dr. Ronny, our transplanted Canadian Oncologist who is the lead on Abby’s treatments. The Cysts have grown a little more, which is not unexpected.   The tumour is responding to trea...

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...