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Test day 1 of 4 down and it was a rough day for momma... but a blessed day as well.
We left the house at 6 AM, expecting to hit major traffic. Arrived at City of Hope at 6:45... for an appointment at 8! So we walked the rose garden first. It is GORGEOUS! You can literally feel a sense of peace, hope, and tranquility throughout the entire campus. They have a gate in the rose garden that says "There is no sense in curing the body if in the process you destroy the soul" and you see that theory in everything they do! They don't treat just the disease, but the mind and spirit as well. After wlaking the rose garden we headed to the Zen Garden. In there was a beautiful Koi pond with TONS of Koi. AND they leave a bag of food for patents and visitors to feed the fish. So Joey fed the fish for a while and laughed at the turtles (we counted at least 11 turtles, and I suspect about 4 more). From there we walked around Hope House, the Path of Roses, and back to the front fountain (will post videos as soon as I can upload them). We checked in around 7:35 and headed to Pod 3D. They called Jey quickly for his labs. 10 vials of blood, for a repeat HLA typing. This is the 3rd time they have needed 10 vials of blood!
While sitting in the chair Joey got to watch his cartoons (and I tell ya, he loves clinic days since he watches all the shows we don't allow at home) and then Nurse Ginger came to take us to the procedure room. She walks in and says "I hear theres a present for Joey Born! Are you Joey?" OK, Joey is hooked.. he heard his name and present in the same sentence. So he gladly follows her and we walk into the procedure room where on the pillow was a Tonka box with 5 trucks in it. Joey LOVES cars and trucks so he wanted up on the bed NOW! The anasthesiologist was ALREADY there! They got him hooked up to the monitors and me and DH sat close by while we talked about what he would get (Versaid, Ketamine, and Propofol). Signed consents and Dr. R walked in. This is the HEAD of peds research and Joey's primary doctor. They administered the sedatives and Joey fell asleep quickly. Dr. R himself did the biopsy. I stayed in the room with him the entire time. It was difficult to watch them basically drill a needle into his bone, but it HAD to be done.
Dr. R says his bone is very very soft (likely an effect of all the chemo and steroids he has been on) however he had difficulty getting any marrow from him. He told me flat out that he suspects bone marrow involvement. If there is, I'm not sure how or even if this would change the treatment plan at this point.
When it was all done, they bandaged his hip area where the had stuck him, and we started working on waking him from the sedation. He woke up well and by the time he was awake they had breakfast in the room (delivered to the clinic!) for him. So he had some apple juice first to see how he did, then some milk. Finally he got the banana and chipmunk cheeked it (he had had nothing for 13 hours by this point). We were released to go home and on our way out he was happily eating his blueberry muffin.
Next pre-transplant test is on the 8th... an EKG and Echo under sedation. Then the 12 for Kidney test, CT scan, chest x-ray, and bone age scan under sedation, and finally on the 17th a brain MRI under sedation. We sign consents on the 21st and if all goes as planned then on the 27th he will be admitted, have surgery to remove his current post and place a Hickman broviac, and his conditioning chemo will start.
I know it's scary, but try to remember, Joey's labs have been GREAT. NO sign on marrow involvement at all. Also, Joey is a rare case. Not many two olds (even in the cancer world) have been on the aggressive meds he has been on. Nor have they done so for 20+ months! While I have no doubt that Dr R. knows what he's doing, I do doubt he's ever had a patient quite like Joey. (After all Joey likes RARE!)
Thanks to Jaidynsmum for my siggy!
Proud former foster parent to a teen. Waiting on our next call. Proud Aunt to 22.
Proud mommy to 7 angels. Survivor of 4 failed adoptions (5 kids)