Avery has been rocking physical therapy, eating really well, getting better with her poop anxiety, and thoroughly enjoying being home! We recently went to the zoo and made homemade pizza at home. Her eyelashes are halfway back and hair is coming in. She’s our “fuzzy duckling”. Also, I’m sure most of you saw that she got to ring the bell on May 22nd, marking the completion of her chemotherapy treatment! It was an incredible moment. When we turned the corner in the hallway we were overwhelmed by the amount of people there. There were probably 40 or so people. We were able to have a small number of family and friends. Her surgeon and some of his team were there. One of her favorite nurses who works nights was at the gym but left when another nurse told her Avery was ringing the bell.
Avery had her monthly clinic appointment yesterday which was an eventful one.
Now that her central line is gone they had to draw blood the old fashioned way. Avery was very brave and didn’t put up a fight.
She was due for her monthly antibiotic which also used to be administered via her central line over a 2-hour period. Instead of trying to poke her again to get an IV going they tried administering a similar medicine with a nebulizer for 10-15 minutes but Avery was not having it. She said it smelled bad and she couldn’t see with the mist. There were also possible breathing side effects that may have required a steroid on the nebulizer afterwards. Avery opted instead to get an IV placed and do the 2-hour one. It took a couple pokes but she was brave again. This also meant they’d be there 2 hours longer but it was Avery’s choice and she had our support.
Avery also had her first post-treatment hearing test. Her last hearing test was before phase 2 on January 11th. If you recall, one of the chemos in phase 1 had a side effect of causing hearing loss, most often to high-frequency hearing. One of the chemos in phase 2 had a similar side effect. Avery did experience loss to her high-frequency hearing in phase 1 but they never needed to adjust her dosages. They had explained the loss was like being unable to hear birds chirping down the street. Unfortunately, yesterday’s test showed she has had further high-frequency hearing loss in both ears and has even had some mid-frequency loss. They are recommending she get a hearing aid for her left ear for now. The chemo is still in her and could continue to affect her hearing going forward too. The audiologist said she couldn’t say whether or not complete loss was possible but our oncologist assured us that this is incredibly rare and unlikely. Heather and I had a really hard time with these results. We’ve always had in our head that this would only be high-frequency but our oncologist had said that was what they typically see. After thinking about it more Avery has never shown any signs that she was having a hard time hearing anything. We’ve even thought that her hearing is better than her previous test results. In conversations, while watching tv, while being in the car listening to music, etc. she has never once shown that she can’t hear something well. She also received high-dose chemo 3 times between these hearing tests, and it’s not like yesterday’s results were before the start of a new phase. Our oncologist had just seen an older patient right before Avery who had similar hearing loss from treatment and she said he reported not having a hard time hearing anything. So, we’re hopeful. Heather explained some of this to Avery at the hospital and Avery, sweet as sugar, said, “maybe I can pick out a tye-dye hearing aid.”
Still hurts bad that our perfect little rainbow and IVF baby has had all this happen to her. So unfair.
Avery will go back on July 10th for her 2-hour antibiotic and her next MRIs and bloodwork will be August 6th. We need to schedule a consultation for her hearing device too.
