December 2018 - Some positive steps

Over this past 2 months we have had a several doctor visits and we have had some positive news. 

In early November we met with the Pediatrician in Red Deer to discuss Abby’s headaches and fatigue.  She was coming home from school by about 10:30 every day in September and October.  As a result, we signed her up for Social Studies by home schooling, and hoped that she would be able to get far enough in the mornings to learn Language Arts, Science and Math. The reality was she was really only getting through the first class of the day, Language Arts, and was starting to fall very behind in Science and Math.  She spent so much time trying to do homework for those 2 classes that it was difficult to do a lesson for Social Studies each day.  The Pediatrician prescribed a beta blocker to try and help with the headaches.  We are doing a test of about 2 months to see if it works, and if not, we will then try something else.

Nova, our supposed therapy dog, turns 1.

The next week we received Abby’s growth hormone via mail, wrapped in an insulated box with freezer packs to keep the vials cold.  A nurse visited to train us on how to use the auto-injection system.  It measures the amount and automatically gives the injection while we replace the needle each time, track where the shot was given, and change the vial of hormone as needed.  The needle is fairly small and only has to go just below the skin.  Still annoying, but not like trying to get the vein each time.  Abby receives injections 6 times a week.  The growth hormone is supposed to help her grow and can help with bone and marrow health, which in turn helps the production of blood and could help her energy levels.

Some positive things started to happen a couple of weeks after getting the new headache medicine and the growth hormone – Abby started staying at school until noon!  In the 3 weeks before Christmas break she has been staying until lunch about 80% of the time, which is awesome when compared to not once in September!  She is catching up in her classes, and we are considering dropping the home study program for Social Studies as she is attending the class now.  A side effect of the beta blocker is lower blood pressure, and some impact on Abby's sense of balance.  She regularly sort of "stumbles" even when she is standing still. 

Abby’s school had a visit from a Neuropsychologist from the Stollery and an Assistive Technology Consultant from the Kids with Cancer organization.  They observed Abby in class and then spoke with us and Abby’s teachers about how to best help her learn and get through a day.  Some suggestions were to use technology to help take pictures of notes on the board so that Abby can focus on what the teacher is teaching rather than on taking notes. For most of us we can only focus on one thing clearly at a time, and for Abby this is even more so.  Distractions, like taking notes while the teacher is talking, can make it so she doesn’t hear or understand what the teacher is saying.  We are now looking at an iPad to help her take pictures of the notes on the board so she can listen more.

The day after the school visit, we took Abby to the Ophthalmologist at the Stollery for an eye exam.   Results were good.  No changes to vision in either eye.  The left, which has some damage from the cysts pushing on her optic nerve, is the same as before, but there is no swelling on the nerve.   The right eye is the same as it was, which is good.  No change is good change.

Just a few days ago we went to the Stollery for the results of a blood test, done at the local hospital, and the MRI that was done in Red Deer.  The Endocrinology doctor said her current medication for thyroid and cortisol hormone levels are good, but they are increasing her growth hormone levels.  They want her to grow more so that later this year they can look at starting estrogen hormones.  Once that starts her growth plates on some of her bones will begin to close.  She has grown an inch in the 7 weeks she has been taking the growth hormone.  They are also concerned about her weight.  Her body wants to store the energy she eats, rather than let her use it up, which contributes to her fatigue.  We will have to review her diet and we plan to go swimming more in the new year to help with the exercise.  In an effort to help her last longer at school we have been giving her rides to school, but we will look at having her walk to school again.

The Neurosurgeon said the MRI results look good.  The tumour is stable but it is a little tougher to tell with the cysts.  We were hoping the tumor had shrunk, but we will take the tumour staying stable.  Abby doesn’t need to have a MRI for 6 months, so that is definitely nicer than every 3 months.  The surgeon wasn't as concerned about weight.  Often children with this tumour and operation gain about 80 pounds the first year.  Abby has gained about 30, so in comparison that is good, but we do not want to prevent other health complications that come with weight, so will be working on it.

In summary, headaches are still around, but not as strong or often.  Fatigue is still around, but not quite as strong.  Abby is lasting until noon at school, then coming home and napping for a couple of hours, and is good to go for the rest of the day.  We hope she can last even longer in the next month or 2.  She is getting taller, with the growth hormone, and her energy is a bit better.  Emotions can get the better of her.  The damage to her brain and glands makes it difficult to handle stress and frustration, but we are working with her to recognize that, and with her siblings as well, as they are often  involved somehow.

We are very grateful for each of these small steps of progression.  Abby is such a happy young lady, and very thoughtful towards others.  She loves school, and has great friends that have been very kind and supportive over the past 2 years.  

Thank you to everyone for your thoughts, prayers and kind words.  Have a very wonderful Christmas.