November 2018 update with headaches

Generally Abby’s health is well and her attitude is very good. However, we are finding a new normal as not everything can be the way we had hoped.

We are well into the school year.  Abby usually only lasts about 2 to 2.5 hours at school.  This is a result of heat, noise and fatigue that contribute to headaches.  We both take turns picking her up, but we are also very grateful to the many friends who have offered their time to pick up Abby from school and bring her home.  Most days she comes home and has a 2-hour nap and then is good for the rest of the day.  This is why we got a family dog as he is her company for a few hours every day.

She does a lot of homework because of missing so much school.  We are doing Social Studies as a homeschooling class, but we are really trying to help her stay for Language Arts, Math and Science in the mornings.  The school and teachers have been very flexible and helpful.  The school has provided a room with a bed, we brought the mattress, hoping a nap at school would allow her to get through the rest of the day.  They have also whittled her schedule down to the core courses.  

Putting in the IV for CT Scan

We have purchased glasses that are supposed to help prevent headaches from fluorescent lights, and a small fan and cooling cloths to keep her cool.  We are trying to reduce these headaches so she can get the teaching she needs and the social connection with her friends that only comes from spending time with them.

We had a CT scan a month ago to see if the tumour itself is causing the headaches.  The scan showed the tumour as being stable, which was a relief to us, but we are considering all possible other causes, and there may be more then one.  At Red Deer Hospital they used a full ultrasound machine to put her IV in, and they numbed her arm with a shot instead of gel, which made the process much easier on Abby.  Her veins a difficult to find, a combination of genetics and the steroid she takes everyday, and sometimes they try 4 or 5 different locations to find her veins, which is not very fun.  This was much better.

We started growth hormone treatments this week.  The tumour damaged her pituitary gland, and growth hormone deficiency is a common result when the pituitary gland is injured.  She has always been small and the tumour may have played a part in this since she was a baby.  The hormone is given through an injection 6 days per week.  We don’t know how tall she will get, but we are hoping for at least 5 feet, which is still several inches away.  A nurse came out to show us how to do the injections and watch as we did the first one.  It is a very small needle and only needs to go just below the skin, nothing like the IV or blood test needles Abby is used to.

Growth hormone injection kit

Growth hormone can help the health of bone marrow which in turn helps with healthy production of red blood cells.  We are hoping this can aid Abby’s energy levels which could reduce her fatigue.  So many things linked together to make a body work well.  Unfortunately, a common side effect of growth hormone treatment is headaches.  Another one is the bones can grow faster than the tendons and muscles which can be painful.  We are getting Abby to do some stretches to make her muscles and tendons ready for her bone growth.

We want to say we are very grateful for the many doctors, nurses, MRI and CT scan technicians, endocrinologists, oncologists, phlebotomists…. The many, many people that help us with Abby’s health.  It is a large team.  We are not in the emergency stage for her condition, so things run a little slower compared to when her life depended on quick action, i.e. we have been waiting for a sleep study for several months, but there are people available when we have questions or are seeking for advice.  

Related to this, unfortunately, we have a niece who was recently diagnosed with a brain tumour.  It is very different from Abby’s, but visiting her in the Stollery brought back a lot of emotional memories.  Being in the same wing and rooms, even seeing the same neurosurgeon, made our visit very moving.  She is in good hands and we pray and hope for the best.

Her family is sharing their journey at  https://www.facebook.com/The-Adventures-in-Hollys-Head-1971218909847955/