Good News, twice!


We have some very good new about Abby.  When Abby and Mom were at the Stollery Children’s Hospital today, the Dr. said the most recent MRI showed the cysts had decreased significantly and the tumour had decreased slightly! This is great news!  With the speed of growth of the cysts over the past few MRIs we felt like the Dr.’s had been preparing us for another surgery, but these results do not indicate a surgery is needed at this time.

New MRI on the left, old MRI on right.  Big white bubble in the centre right of both pictures is 1 of the cysts. 



Abby still has hormone production issues, and the radiation is still working on her good cells along with the bad, but we will take this win.


Endocrinology said they will start to consider growth hormones in the fall, 1 year after radiation treatment.  They may postpone other hormones until after the growth hormone is working for a while to encourage a bit more height.

They are a bit concerned with her weight.  Most children who have craniopharyngioma treated with surgery end up with hypothalamic obesity, often gaining 80 pounds in the first year after surgery.  Abby has only gained about 30, but some symptoms are there.  Basically, even if she eats only 800 calories in a day, a typical 12 year old would eat about 1,500, her body is trying to store much of it.  We have been trying a low carb and low sugar diet, even natural sugars aren’t good, in order to keep her insulin levels low.  This is supposed to help her body not try to store everything, but it is not an easy diet and her body is still trying to store a lot of her intake.

Abby also continues to struggle with fatigue, which is a normal side effect of radiation treatment on the brain, plus the body is trying to store calories rather than use them throughout the day.  Over the past few months she has made it past noon at school only several times.  She often comes home quite tired and with a headache.  Fortunately, a 1.5 hour nap usually helps with this.  She then works on Science with Mom.

Other good news is that Abby had her Wish Reveal from the Make A Wish Foundation.  Two Saturdays ago around 30 family members and  friends gathered at Carnival Cinemas in Red Deer at 9:30 in the morning to surprise Abby with the wish reveal.  The Central Alberta coordinators met us, and the theatre gave us free popcorn and pop, which Abby got to have on the special day, and then in front of everyone the Make A Wish coordinators told Abby that we, as a family, are going to Comic -Con in San Diego this July!  I am not sure who was happier, Abby or her older siblings.  The whole group then got to watch the Black Panther movie in the theatre.  It was very cool, and nice to be able to share that moment with so many people.

We have e-mailed the news of both events to her older brother, but he is on a mission for our church and does not get to e-mail back more than once a week.  I am sure his both excited and probably a little jealous.  We will make sure we take lots of pictures to show him the trip.

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