After a very long, 12-hour day at the hospital where Liam couldn't eat or drink until 1:30 p.m., we have no news to share. The PET scan was inconclusive. It was positive in an area that it should have been positive but also was close to this unidentified 1-centimeter spot. There are lots of reasons why this could have been - his right kidney tends to pool more fluid because it doesn't drain as efficiently and he still had MIBG dye in him which registers positive and was in his kidney The MRI was done too late in the evening to get a reading. (We didn't start it until 6:15 p.m.) The MRI will be the deciding factor. What we do know is that Liam has no evidence of disease in the ways it is measured and he has not exhibited any changes other than being a very active 4-year old. We also know he has a spot on his less-than-perfect right kidney that is at the top, has been there since April, and is the same size since April. The fact it's the same size isn't consistent with cancer and the fact it's in the same spot as his original tumor isn't consistent with what happens to patients operated on by Dr. LaQuaglia. 97% of patients don't have recurrence in the original tumor spot because he gets it all during surgery. This spot was also radiated last summer so it got another dose of treatment and that radiation also could have further damaged his already damaged kidney. I hate to use the word but, but I have to here. The but is this is a formidable foe that doesn't like to lose so we need to "pull out all the stops" and find out what this thing is. I heard lots of scary words when I finally met with a very tired looking Dr. Modak sometime after 7 last night. My legs were shaking uncontrollably when I met with him. He, too, is puzzled, frustrated and very concerned. We were very fortunate that Linda, one of the awesome nurse practitioners on the team, stayed late on a Friday to entertain Liam so that I could meet with Dr. Modak.
Liam stories to share.
- He insisted on bringing his new guitar to the hospital and carrying it around in the case. At 7:15 a.m. he was serenading Reece, his favorite ICU nurse, with a lovely original tune. He held impromptu concerts throughout the day including in the long hallway on the 2nd floor we call the echo hallway because of it's great echos. While he was in nuclear medicine, he pulled out the guitar but this time grabbed a box of Cheerios he desperately wanted to eat, pulled the bag containing the cereal out of the box and carefully placed it in the stroller seat, and placed the empty box in front of him. He then proceeded to play and encouraged people to give him money for playing. One of the nuclear medicine techs took him into the scan reading room for him to play. And play he did. He total take for the day was a little over $3.
- The MRI is really, really, really, really loud. We were both stripped down to hospital gowns and undies for the scan. The only time he cried during the day was when he had to put on the hospital gown, but I think when he saw me in one too he was a little better with the situation. He was on the table, strapped in, ear plugs firmly in place. He never flinched. He was unbelievable. The noises sounded like grossly unnatural sounds you'd hear in a science fiction movie with alien ships invading the earth. They were awful sounds. We are hoping those awful sounds yield the test results we need. When the sounds would briefly stop, he would yell out, "Mommy - Are you still there?" I would assure him I was. And then he would say, "OK - I'm fine. I just wanted to make sure you were still there. Here we go again!"
- When he could FINALLY eat around 1:30, he looked at me with a mouthful of trail mix, lifted up his drink and said, "Mommy - Cheers!" We clinked cups and took big drinks. He then noticed I, too, hadn't eaten and asked if I wasn't eating because he couldn't eat. I told him yes and he said, "it's because we're a team."
I can tell he's getting older. He kept asking me today why people were using the word "test" when they were talking about pictures. He wanted to know why. I need him to be fine.
