Heading to Florida

We are just waiting for the flight information from Alberta Health Services, but it looks like Sherri-Lynn and Abby will fly down on Saturday.  I (Jerry) will join them for a few days to meet doctors and hear the treatment plan and then come back for a bit to make sure the house has not been destroyed by those left behind.  When I go down the second time I will have a bit more time to plan and book flights but everything is a little last minute this trip.

Treatment takes place at the University of Florida Jacksonville.  We will find out the schedule shortly.  Abby will receive proton radiation therapy 5 days/week for 6 weeks, and it looks like they will be down there for 7 weeks total.  The treatment is at the same time each day.

Jacksonville's forecast is ranging from 30 to 36 degrees for a high everyday for the next 2 weeks, with a humidity level of 60% - 80%.  We are looking at swimming pools to hang out in to try and keep cool, especially as Abby's body can no longer regulate temperatures as well as it used to.  The YMCA looks pretty good.

We believe we are staying at the Ronald McDonald House which is only a few miles from the treatment center.

We will keep the blog updated as we know and do more.



For those interested in knowing what proton therapy is you can go to the following link:

http://health.usnews.com/health-news/best-childrens-hospitals/articles/2016-06-21/the-promise-and-limits-of-pediatric-proton-radiation

Comments

Post a Comment

Popular posts from this blog

Gabby's letter to her grade 5 class

Image
Gabby wrote the following letter to her Grade 5 class Dear 5k, I have some bad news for you. I found out that I have a craniopharyngioma brain tumour. The doctors say other than the tumour I am heathly. This makes it easier for me to heal after my surgery. I am having surgery on Tuesday. This tumor is really rare only 1.4 people in a million get this type of tumor. This means I really am one in a million! The doctor calls this type of a tumour a booger instead of a creepy crawly because it does not spread throughout my body and that's good news! It has been in my head for a while, maybe even two or three years. Right now it is about the size of a kiwi which seems pretty big but they found it early! I will not be at school for a while because I will have to recover from my surgery after Tuesday. We named my tumour Fred because when my mom said brain tumour she started to cry! She asked me what I wanted to name it and I said Fred. So we call it Fred in my head whic...
Read more

What is being monitored

Image
What is being monitored Gabby is having regular blood samples taken in order to monitor a variety of hormones.   The taking of blood is called phlebotomy. She was quite sleepy over the past 24 hours, which is completely understandable, but seems to be a bit more alert this morning.   Her throat is sore from the breathing tube, so it may be a day or 2 before she starts to talk much.  She is hungry.  The nurses are calling her a unicorn patient - they just don't exist. Currently she is being monitored for diabetes insipidus, where the kidneys don’t reabsorb water.   This is related to the function of the Hypothalamus. Where is my hypothalamus? http://www.yourhormones.info/glands/hypothalamus.aspx  The hypothalamus is located on the undersurface of the brain. It lies just below the thalamus and above the pituitary gland, to which it is attached by a stalk. It is an extremely complex part of the brain containing many regions with highly sp...
Read more

Going Home! (Hopefully!)

Image
Yay!!!!!  Whoo hoo! We are very excited to finally be going home tomorrow!  We have decided this is the worst two week all inclusive holiday ever!  That being said the service was amazing the staff is awesome and the concierge wonderful.   We have had a crash course in the function of the brain, the hypothalamus, pituitary gland and endocrinology.  We've learned a ton of acronyms PICU, ICE, ICP, EVD and expanded our vocabulary to include some really impressive medical terms like craniopharyngioma, endocrinology, and hypopituitarism.  We've learned that nurses love gifts like urine, stool and farts and get really excited about them!  We learned that pet therapy dogs are the best animals ever and that they can even take our pain away!    We've learned that the Stollery Hospital is the best place to be when you are a sick kid, has the most amazing doctors and that our team ROCKS! We've learned that so many people love Gabby and will do...
Read more