November Scans

After much back-and-forth between Children's, we got Eleanor's scans completed. Whew! Originally we were looking at three days over there with one appointment per day, but we were able to whittle it down to only two days, one night. It made for a long couple of days, but hey, it is always a long couple of days! It was really nice to only have one night in the hotel though.

Eleanor and I left at 5:20am on Wednesday morning to first pick up Granny (our travel companion for the trip) and then to head out for the 7am ferry. Eleanor was supposed to be NPO (nothing by mouth) for 8 hours prior to her 11:15am scans, but I raised my concern to the nurses in day surgery because of her hypoglycaemia, so we were able to modify it a little bit. She could drink milk when she woke up (she had 3-4 ounces) and could drink clear fluids (apple juice, popsicles and water) for an extra hour. It didn't help much. We checked her blood sugar before sedation and she was dangerously low. I was honestly surprised because she had been in such good spirits travelling over on the ferry. She wasn't shaky or crying or symptomatic at all. 

Dolly's well-being was of most concern

Everyone got a bit excited about the reading and endocrine came by to help out and finally it was decided she could have some sugar water and if her levels came up enough, she would be fine. She would also get some glucose through her IV once she was out. This seemed to satisfy everyone.

We are OK!

I took her into the CT area to get sedated, and it was really sad. I forgot how awful it can be without an IV already started. When she had her central line (or an IV), they would inject some white stuff into it and she would be instantly knocked out. Without an IV, she has to be gassed. It seems like that wouldn't be too bad, but it's awful. They have to hold the mask really tightly around her face and she screams and fights like no-one's business. It smells terrible, too. She finally went limp, but her little mouth was still agape like she was in mid-scream. Poor bear.

Anyway, it went off without a hitch. She was typically cranky when she came to and was STARVING. She gets a stress dose of cortef any time she is put under, so couple that with the fact she hadn't eaten since 6pm the night before, and you have one hungry girl! After attempting and failing at getting popsicles and sugar water into her, they finally let me feed her. She isn't supposed to eat for 6 hours or something ridiculous after sedation. She's never made it more than an hour. She scarfed down a cup of cheerios and a piece of banana bread and was back to her happy self! We got her dressed and went round to the oncology clinic and the wards to drop off some cookies and say hi to all our old friends. It was so great to see everyone and Eleanor was a champ. She was in the best mood! I was marvelling at her the whole day because she was so happy! I literally bawled my eyes out on Friday night last week because I was so exhausted from looking after a child that spent the entire week SCREAMING at me. And then this child who can't stop smiling and playing and flirting... It was a huge change in demeanour and she was in the hospital! Shouldn't she be more miserable? Whatever. I am just happy that she is happy! Granny and I were pretty tired by this point, so we made our way to White Spot where Eleanor enjoyed her first Pirate Pak. She had never eaten dinner in a restaurant before, so it was a really nice moment. I couldn't believe that we finished up at 6:30pm. Girlfriend had been going since 5:00am with only one short nap in the car. Mental.

Granny and I are busy colouring, Mum.

We got to the hotel and all of us crashed pretty hard. Granny offered to help put Eleanor to sleep, so the two of them curled up into bed together. It was pretty cute, especially since my mum FREAKED out when she found out Eleanor and were bedsharing when she was an infant and again during her treatment. It's pretty nice to have a sweet child sleeping next to you after all, hey mum?

Thursday started off very relaxed. We woke at 5:30 and chilled in the hotel until Eleanor's nap around 8am. We got our day started after that and headed over for a quick shop at Ikea. When in Richmond...! We got to the hospital for our appointment with Dr. Doom and Gloom (Schultz) at 1pm. He came in pretty bleak and was very concerned about her cortisol levels. Apparently they were off the chart. My hands started to sweat and my pulse raced. Her body doesn't produce cortisol so if it was high, something else in her was producing it... And then I realized that they must have drawn her blood AFTER they gave her the stress dose. Whew! We were both relieved to figure that out and his mood was much more jovial. He even used my phone to text Kris (who was frantically texting me) to let him know everything was fine. Cute. And weird. But cute.

Basically everything is the same as it ever was. Lots of tiny spots on her lungs that are unchanged and nothing in the tumour bed. He is quite concerned with her breast growth. They showed up on the scan as boobies. No weird growth, just normal prepubescent boobies, but obviously not normal because Eleanor is not even two. He really wants them to go away, but nobody has an explanation as to why they are there. Her puberty stimulation test came back normal, but her estrogen is elevated. Our new plan of attack is to do a PET scan, which is similar to a CT scan, but radioactive. If any tumours are in her body that are a) new or b) in an area we haven't checked before or c) malignant (I'm looking at you, random spots in lungs!), they will light up. If anything lights up, he would like to send a surgeon in to chop them out. If nothing lights up, we can assume that a) there is no evidence of active disease in her body (!!!!) and b) the Mitotane is causing her to grow boobies. If we are lucky enough to have the latter (and oh, God, I can't even let myself ruminate on it because OHMYGOD what if my daughter is cancer-free? What if I am not constantly looking over my shoulder and wondering is this her last birthday? Is this her last Halloween? WTF?!?!?! Shhh.... don't think about it now....), we would look at stopping the Mitotane fairly soon. This is not something to be taken lightly and Kris and I are very apprehensive about it. But if all signs say that she is fine without it...

ANYWAY. We must not get hung up on the what ifs. We must first get through the PET scan, which should be in a couple of weeks time. It means heading back over to Children's and more NPO mornings, but we are a pretty well-oiled machine now, so it won't be too bad. And it means we get an extra chance to see all the people we missed this time around! I'm just keeping my fingers crossed that it won't be on our birthdays. We celebrated last year in hospital, and it would be nice for it to be at home this year. We will hear from the hospital soon about when this will be happening. For now we will be enjoying our time at home as family and celebrating another successful set of scans!

Back to monkey business at 5 in the morning. I think she is happy to be home!