A Birthday Party and an MRI

This morning we had planned on going to the Jacksonville Zoo but ended up at a birthday party instead!  Today was Reed's 6th birthday.  Reed is the RMH (Ronald McDonald House) dog!  He comes to visit often and today was his birthday.  We had cake and ice cream and lots of puppy love!  We also went to the Jacksonville Farmers Market and had the best cantaloupe and mangos I have ever tasted!  Fresh produce at great prices had me wanting to fill my trunk and start canning!  Lol  

We also went to check out the YMCA.  They have an amazing facility that we have access to while we are staying at the RMH.  It is only a year old and is right on the river so while you are working out you have a great inspirational view.  They have classes that we can take and a track so Abby can still do her hour walk each day but can be in the air conditioning instead of out in the heat.  She has a hard time regulating her temperature due to the damage to her hypothalamus so the heat down here is especially hard on her.  They also have two pools which are heated - personally I think they should have cooled pools. They also have a sauna and a steam room which we thought was funny since outside is a sauna and steam room!  Their gym is amazing and Abby can use all the cardio equipment too. 

After checking out where we could lose a few pounds we thought it was fair to balance that out with a trip to Krispy Kreme!  We have heard for years how amazing Krispy Kreme donuts are so we figured we better give them a try.  I have to say as delicious as they were they still didn't beat the donuts from Bootsma's Bakery back home!
Today my sister booked Jerry and the other kids tickets with her airmiles so they can come down and see us in August!  It will be so nice to see everyone and be able to go and have some fun after a few weeks of treatment. Thank you! 

We have so many people to thank and I hate to single some out for fear of missing anyone but there are so many, I haven't been able to keep up!  One of Jerry's friends (Robin) from the University of A and mission in California arranged to use his airmiles to pay for Jerry's flight home.  We've had many people donate to the gofundme site and to our family personally, we are receiving so many texts and phone calls asking how we are doing and sending messages of love and support on Facebook. It has been wonderful!  Even the Gofundme website contributed to Abby.  People have been following the blog and commenting on there as well.  I also know that my family at home is being well looked after too!  We are truly blessed to have such a wonderful support through our family, friends, community, church and work.  Thank you to you all!  

Tonight Abby had her first MRI.  They will use this MRI to map the tumour and start to plan and program her treatment.  Tomorrow she will have an audiology exam that will be used as a baseline.  A small percentage of children experience some hearing loss depending on where their tumour is located and how close to the inner ear they will be radiating.  The closer to the cochlea the more extensive the hearing loss tends to be.  As they have not mapped her tumour yet we have no idea how close hers will be but they do many baseline tests as they are still trying to learn what the long term affects of proton radiation can be compared to photon treatment.  The more information they can gather the better, so she will be doing a lot of baseline tests before her treatment starts and some during her treatment.  From what we have heard here it should not be long before proton radiation therapy replaces photon radiation for all radiation treatments.  Of course "not long" could still be years away due to the cost so we are very thankful that this treatment is available to Abby!

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