Well his spinal tap on Thursday was positive for cancer cells. Not surprising but disappointing to hear this beast is still active in our little boy. We sent off the films for second opinions to St. Jude and MSKCC last week and should hear next week. We learned Thursday that the clinical trial of SAHA/Retinoic Acid may be closed for him, but we are exploring options to get him the drugs. We also will meet with the team on Tuesday to discuss other trials and combinations of drugs to explore as we wait t0 see if the trial will open.
It is a frustrating and sad time for us. On a positive note, he had a great week at school. He had a lot of fun. He continues to just be a little tired and have bathroom problems, but otherwise is really fine. The prognosis does not equal how he is living. For that, we are extremely grateful.
Tomorrow, we are taking a bunch of his buddies to the DC United game for his pre-birthday celebration. He is very excited and had a great time at the party store picking out supplies with Francisca and I. We will post a bunch of pictures by Monday.
I saw a great quote the other day that said"I cannot not do something today because of what may or may not happen tomorrow." We just have to keep our sweet, vibrant little boy as happy and comfortable as we can today. Tomorrow will bring what it will bring. We have to keep that in mind as these days pass.
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