Here's the lowdown on Lyla:
Everything looked good on her scan. They scanned her head and cervical spine and her tumor showed stability in each view. We made the decision to stop treatment since the chemo seems to have effectively turned the tumor off for now. Lyla will continue to have scans every three months to make sure the tumor doesn't start growing again. Dr. Bendel said any numbers she gave us on the likelihood of recurrence would be only a rough guesstimate at this point, so it wasn't really worth talking about. Ultimately, we all hope that the tumor is now shut off and will remain dormant forever. Layla's nextscan will be in December. She will also go to the neuro-oncology clinic that day to see Dr. Petronio, Cindy the PT, Dr. Bendel, and the neurologist.
The other part of the is it was to review Lyla's neurological progress. We recapped Dr. Bendel on our visit with Sarah and told her about Sarah's suggestion we have Lyla further checked for neurofibromatosis. Dr. Bendel counted her spots and came up with far more than what Sarah found. She actually drew a map of Lyla's body so she could chart them all. She said some of them don't count because they're too small. And others might be bruises. Still, she thought Lyla had enough of them that it is worth it to get her checked out by the genetics team.
People with NF1 are more likely to have brain stem gliomas then people without. Nw that her spots are showing more, it's possible that if she has NF1 it could be a genetic link to why she has her tumor. Sometimes people with NF1 get tumors on their optic nerves. Thankfully, Lyla has no signs of that. Kids with NF1 also often have larger than average head circumference and cognitive delays or mental fog. She might have a big head (so do I), but it's not off the charts and she certainly doesn't have any cognitive delay. Dr. Bendel said even if she does have it, hers would be a mild case.
Next step is to have her formally tested by the genetics team. They're the ones who have the special light that can highlight cafe au lait spots so we can know which spots are of concern and which are just other color variations in Lyla's skin. Given her history of brain stem glioma, they will likely go through with the testing whether she has more than seven spots or not. If she tests positive, Masud and I will have to get tested too since one of us would have passed it on to her. Obviously neither of us knows if we have it, but either one of us has it and doesn't know it or Lyla having it would be a random genetic mutation (very highly unlikely). If one of us tests positive, Amir will have to be tested too. Let's hope the spots are just spots and nothing more! If they're not, there's nothing else they would do. She will continue to have scans for her tumor regardless, so they will just add more things to the list of what to check when they review the films.
In other news:
I had to start supplementing with formula this week because I was getting way stressed out by the breastfeeding and my supply is starting to diminish. I can't tell you what a relief it is to know that I if don't get the full 5 ounces he needs we can just give him formula. The week started out well and I had plenty of milk. Wednesday, however, Amir got 2 ounces of formula at Faye's. Thursday I was short again and he had a whole 4 ounce bottle.
Then the crazy fussiness and pooping every hour started. Faye said he didn't sleep most of the day and he was pooping all the time. Even after I picked him up last night he was extremely fussy and would scream in pain every time he went. He had three more dirty diapers at home before bed and one in the middle of the night. Then three more before we saw the doctor at 10:20 this morning. After looking at his diapers and hearing the story, Dr. Bennett said he is likely lactose intolerant.
Translation: no milk-based formula. Mr. Fancy Pants has to have soy. She said to keep breast feeding as much as possible and when I have to supplement, use soy formula. Apparently it will thicken his poops (they're like water now) and since it's dairy free he won't have as strong of a reaction. If soy doesn't work, we'll have to go to hypoallergenic formula. And he have just over a week to figure it out since I will have to supplement him when I take my first post-baby business trip. Hopefully he will grow out of it, but there's no guarantee.
So much fun!! What would life be without fun outstanding medical questions and unknown futures?!
No comments:
Post a Comment