6-month scans

What a whirlwind!

We were discharged from Victoria General late Saturday and fifteen seconds later we were on our way to Children's. Well, not exactly, but it felt that way. We got to our hotel Monday evening and were out the door at 6am Tuesday. We tried to make it up to 3B for shift change so we could maximise the amount of nurses we could see. We got there a bit late and they were in their meeting, so we quickly said "hi" and checked Eleanor in at radiology. Her scans took a bit longer because they did an MRI of her head and pelvis as well as her abdomen. Endocrine had ordered that as well as a stimulation test to figure out why she has pubic hair and breast buds. Once she came out of sedation we headed over to the oncology clinic to get the results. We were lucky(?) enough to run into our favourite family from Squamish. They were in for their last appointment before they head off to Toronto on one-way tickets to have a very intricate and risky surgery. I just adore Lina and her big sister Frieda so much. It was wonderful to see them, I just wish it could be in better circumstances! After waiting around for a bit, we were sent away. Apparently Dr Schultz didn't think it was necessary to see us, so we took that as good news and ran away!

Best people ever.

We made another trip to 3B before we left to say "hi" properly, and it was incredible. So many familiar, kind faces and hearts. I have such a hard time explaining how much those people mean to us. They are the best, and they were so thrilled to see Eleanor doing well. It sounds like things have been busy and a bit tough around the ward, so hopefully Eleanor's giggles and smiles were enough to brighten their day. Oh, and a number of nurses and one of the residents mentioned they have read this blog but some were concerned that it might be an ethical issue because I didn't invite you. Please consider this your invitation. I am thrilled to hear that you want to follow Eleanor's journey! It's very touching and fills me with warm fuzzies.

Wednesday was a bit tougher. We came in early for a quick, impromptu consult with a genetic counsellor. We never got our requisitions for the blood tests to find out if Kris or I am carrying the Li Fraumeni gene mutation. We talked with a geneticist ages ago and she reassured us that it was highly unlikely that we had it as our family history has no evidence of it, but we thought we would at least get the reqs and then make our decision about the blood work.

We then headed over to endocrine to do her stimulation test. They left her IV in from the sedation the day before and we hoped they would be able to use it to avoid another poke. They could definitely put things IN but they had a hard time getting blood OUT. This made the test a little tense. They had to do an initial baseline blood draw and then again 20, 30 and 40 minutes after the hormone stimulant is given. The baseline was tough to get; they had to "float" the IV out a bit to get the blood going. After her traumatic experience last week with IVs, this did not sit well with Eleanor. At all. She was seriously worked up, but it was over soon enough and she had a little nap. I switched off with Kris and went out to meet another cancer family I hadn't seen in ages. No sooner had I found them than my phone started buzzing with frantic text messages from Kris saying "COME BACK QUICK". I ran back to the test room and found Eleanor happily munching on Goldfish crackers and the nurses looking completely frazzled and freaked out. Apparently during the blood draw Eleanor screamed so hard she lost consciousness for a bit. She came to fairly quickly, but no one wanted to continue with the test. Her endocrinologist was so concerned about her, he sent us down to cardiology to get checked out.

So we went! And waited and waited and waited. She had an echo and an ECG, which I guess is handy because she is due for another echo pretty soon! When we finally met with the cardiologist, he was delighted to see her heart looking so GOOD (he had been around in the beginning) and dismissed this episode as a Breath Holding Spell and nothing more. He even encouraged us to take her off the beta blocker as her heart function was perfect.

So all in all she got an A+ from cardiology, a solid B from oncology and an F- from endocrine. Hopefully they will have enough info from the one blood draw to determine if she is in precocious puberty or not. Even if they don't, I am not sure we will be repeating that test anytime soon! I'm bummed out that Eleanor has become that kid that fights everything and screams the loudest. I know kids her age that are happily distracted by bubbles or music or toys, but none of that seems to phase her. She really hates being physically controlled. I keep thinking it is our fault as parents - that we are somehow bringing too much stress into the situation. Something to think about anyways. But hopefully she won't need any IV starts or excessive blood draws for a looooong time! Just her monthly poke and away we go! Fingers crossed for NO MORE HOSPITALS!!!