The Transfer to SCCA (cont.)

The Donor Princess. . . .

Julian, Marie, and I . . . .

Julian "sampling" Josie's ATV. . .

Julian being the wonderful Big brother to Josie. . . . .


On Wednesday we started early at SCCA:
0815 - Met with the Financial Coordinator at the SCCA who walked us through the payment arrangements, and the financial details of a operation of this magnitude.
At 0830 - while we were finishing up, Julian had his EKG on the 6th Floor
0900 - Julian had his Pulmonary Function tested. This consisted of him exhaling & inhaling into a mouth piece to measure the health, and volume of his lungs.
1000 - We met with the Social Worker for the SCCA - I was very fortunate that she had already met with the Social Worker at Children's Hospital, so I did not have to rehash old details.
1100 - Julian had a Dental X Ray to make sure his teeth are healthy.
1115 - Met with Christa who is the Child Life Specialist for Julian, and Marie. She works closely with Julian to make sure the lengthy post transplant stay at Children's is not too boring. She cam up with some great ideas for him. She is working on including Marie in many of the activities.
1330 - We met with the Doctor in charge of Julian while he gets his transplant. We discussed the radiation treatment; post operation time line for engrafting; challenge with infection; Graft-versus-host disease (GVHD); Mucositis; Veno-occlusive disease (VOD); Challenges with vision (cataracts).

We also found out that Marie would have her Bone Marrow removed directly from her hip bones instead of from her blood draw in her veins. The surprise on her face and questions that peppered the Staff upon hearing this were quite impressive, even by Marie's standards.

This was the one meeting where all the consent forms are signed. I had read them all the night before, and it was just as scary as I had read about with other parent's comments. They are very factual, and Black & White. But as the questions flew at the meeting I could see that Julian is in the best hands possible. There is no stone unturned and they do the best to answer everything. Leaving the meeting I felt that Julian, with his amazing strength, and the hospitals' great people - that prognosis for his survival should be bumped up a bunch of points!

Transferring to the Seattle Cancer Care Alliance

Julian Chilling in our backyard

Me and Marie (Our Donor Match for Julian!)

Julian and I. . . . .


Julian spent last week being administratively transferred to the Seattle Cancer Care Alliance (SCCA). They will be in charge of the Bone Marrow Transfer (BMT) being done on September 9th. The whirlwind of meetings with the folks at SCCA looked like this on Tuesday:

0945 - SCCA Finance Registration - 1st Floor
1000 - Meet with the Nurse in the HSCT Exam Room - 6th Floor
1130 - Access Julian's Port - 5th Floor
1200 - Blood draw for Blood work up - 1st Floor
1315 - Review History of Julian and get Physical - 6th Floor

Julian was in great spirits and is looking great as he approaches the very important BMT.