Wednesday, January 16, 2013

On the home stretch of treatment

Liam is done 21 of 30 radiation treatments, we are on the home stretch! He is still doing treatments without anesthetic and doing really well. Liam is still really tired, although he is still attending preschool when we don't have other appointments. He loves preschool, but on preschool days, Liam is so tired and miserable the remainder of the day until bedtime. Today he went to bed at 5:30pm, that was much easier on everyone. 

On a side note regarding the kids getting anesthetic for treatments, I was told  that St Jude's Children's Hospital generally doesn't try doing radiation without anesthetic for kids under 8 years old! For kids with the same disease as Liam, they get daily anesthetic for all 30 treatments. I wouldn't have ever guessed that it would work, I am so thankful to our radiation therapists for taking this initiative to help the kids.

We registered Liam in Kindergarten for September! Something that feels normal is very exciting for us.

We don't know how it will be for Liam to be in a class with kids with regular kid germs, we will find out when we get there. Although he will be able to get the flu shot next year. Liam will also have a lot of appointments, so between the two, we hope he's not impacted too much.

Many people have asked "what next". January 29 is the last radiation treatment, and the end of Liam's treatment! After this, Liam will have monthly physical exams and bloodwork done. In February, he will have an MRI, lumbar puncture and audiology exam, then each of these again every 3 months for 2 years. Every 6 months to a year, he will have Echo/ECGs, neuropsych evaluations, endocrine function and kidney function checks. We currently have had Physio/Occupational/Speech therapy every month or so through treatment, I'm not sure how often we will have these once we are done treatment. We'll try to squeeze in regular dental and eye exams as well. Although we're done treatment end of January, it feels like this is going to be a lot of visits to the Children's Hospital for the first couple of years.

Regarding Liam's eating, that isn't improving at all, it's just gotten worse. So far this week, all Liam will eat is a few Smarties at preschool snack time. He won't eat more than 4 or 5 Smarties though, so it doesn't really count as anything. We were really hoping his eating would improve.


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