Day -7 of Stem Cell Transplant #2

On Tuesday, December 6th, Theo began his stay in Room 637 for his second Stem Cell Transplant. And on Wednesday morning, his treatment began as planned for Day -7.

Theo is the first child at the University of Chicago to do a tandem stem cell transplant as part of the COG Neuroblastoma Clinical Trial ANBL0532. Researchers are trying to prove (or disprove) that two transplants are better than one. By participating in this clinical trial, Theo hopefully will be helping future children improve their chances of overcoming this cancer. And, most critically, we are all praying that this second transplant will permanently wipe out every single microscopic cancer cell that's lurking in him.

Theo woke up to a festive array of holiday decorations that is covering nearly every surface of his hospital room. He and his sisters (with mom and dad) set up his Christmas-inspired room with garland, snowflakes, santas, photos, and holiday/birthday messages from his friends and schoolmates from Pythagoras and Marion Jordan. There are even stacks of handmade cards filled with good wishes from kids Theo has never met before...kids from his cousin Sofia's school, Jay Stream Middle School, and kids from Saint Spyridon, a Greek Orthodox Church in Palos Heights who also sponsored a fundraiser for Theofanis. He has a handmade winter blanket given to him by his classmate Reagan, too. Theo's hospital room would not be complete without Legos...a Star Wars Advent Calendar is his count down to Christmas and his birthday. 

Oh, and of course, there's his Christmas Tree adorned with multi-colored lights, holiday and sports-themed ornaments, and topped with a Blue Jay, Marion Jordan's mascot, which was given to him by Mrs. Grosch. Like before, the staff at Comer told him that he has the best room in the hospital!

For a tour of Theo's hospital room, click on the YouTube link: http://youtu.be/wfOr1YrPoZA

In the morning, the nurses and doctors started to filter in and out of the room with the day's medicinal plan. Overnight blood work came back looking good. His CAT scans from the previous week looked good, too. And, with news of good test results that confirmed normal kidney function (negating a slight scare the Yianas' had earlier in the week), Theo's body was ready for the high dose chemo and stem cell rescue. A small surprise, though, put the staff on alert. Theo tested positive for the rotovirus, also known as the common cold. Although he has no symptoms, a nasal swab confirmed that he has a colonized virus, which may or may not turn into a full-blown cold. With the known side-effects he'll be facing post transplant, Kosta and Eleni are praying he won't have to also deal with congestion, cough and a runny nose, nor be faced with the risk of pneumonia.

Theo was full of energy when the medicine was hung a little after 10 am. He had already started his mouth care, finished his breakfast that he made himself, and even tackled a Lego set given to him by a little girl Ryan in his class.  Dad stopped by to drop off some important items that were forgotten at home (i.e. coffee) and found Theo sucking on an orange popsicle. "It's medicine," Theo told him. Theo had to keep his mouth cold for an hour before chemo and for the 20 minutes of actual infusion of Melphalan. Apparently, swelling of the mouth can begin instantly. Because Theo can't have non-purified ice, he was given the choice of chewing on frozen gummy bears or popsicles. He tried the gummy bears but opted for the popsicles. After his 5th popsicle stick, he "complained" he couldn't eat any more!

Theo's chemotherapy on Day -7 were:

- Melphalan, 20 minute IV push

- Etoposide, 24 hour IV infusion

- Carboplatinum, 24 hour IV infusion

At about 3 pm, Theo announced he was bored. Although he completed a full lego set, made a snowman on skis with Jackie, the art therapist, watched TV, and played with games, he felt that he had nothing to do. His energy changed. Not even the offer to do homework livened him up.  Child Life came running in with a Wii system, board games and movies to help cheer him up. He snacked throughout the day and ate decently, too. But, it was obvious that tiredness was setting in. And that's when it became ever apparent that the chemo was circulating through his body and it was affecting him. He complained that his central line and the dressing around it hurt, so much that he was in tears. And, he also had an unexplainable splotchy rash instantly appear and then disappear on his face and head. The nurse who witnessed it described it similar to a hot flash. The super cells Theo got back during Transplant #1 are not liking the chemo. And you can't blame them, either.

p.s. Theo sneezed six times today. Please, let's all pray he doesn't get a cold.