Last night was Sydney's graduation from pre-school ceremony. They did a really nice job with it. The kids sang several songs both in English and Spanish, they answered questions from their teacher (Sydney answered the question on where the Eiffel Tower is located), and they gave them diplomas and a flower.
Sydney did a great job. Given our last name is "AARON" and it's tough to come before "AA" where you're in alphabetical order, she went first on almost all activities and was a great leader. I was really proud of her.
Jenson really enjoyed the ceremony too! He especially liked the "silly song" they sang called "Toody Ta" because they stick their bottoms in the air and tongue out while singing. When they were done he yelled out "Again!".
Even though he can't walk and we carried him around the whole time, he still managed to have a smile on his face and enjoy himself. Inspirational. He's handling his not being able to walk better than we are.
We got a little insight today with the results of the PET scan.
There were varying degrees of "brightness of intensity" from the test. The area we thought would be brightest (his skull with all the LCH lesions) definitely showed activity, but wasn't the brightest spot so that is good news that the chemo appears to be helping.
The areas that showed the most abnormality are identical bright spots on both his legs at the ankles and below his knees. The radiologist believes it is unlikely to be disease activity but more likely inflammation. Well, that gives insight into why his legs hurt and why he's not walking.
What is causing it? That's the million dollar question.
The leading hypothesis is that the chemo and prednisone cocktail is helping the disease spots (as evidenced by the skull starting to look better) but one or both of them is causing severe inflammation as a side effect. Right now they are saying they want to do a MRI to rule out other things, but we've asked for additional rationale and what it would tell us that would change the treatment/medication path forward. Just want to make sure we weigh the right risk/benefit before putting him under yet again. The doctors are gone until Tues, so more to come on next steps (no pun intended).
In the meantime, we'll keep carrying him around and giving him pain medicine. Our prayer requests now are even more basic. Please pray Jenson will be able to walk again.
Kristin
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