Surgery/Chemo update

Deledo at the Surgeon's waiting room

Yesterday was a hospital packed day. We got down to the surgeon's office around 9am and luckily I like him a lot because we didn't get in to see him until almost 11:30. Child Life came in to discuss with Haven what will be happening during her surgery and why we are doing this surgery. Child Life come to talk to children about their diagnosis and what is going to happen to them in a way that children can understand. Haven knows almost all of the Child Life people now.

After talking with the surgeon we understand a bit more what will be happening. Haven will keep her current port (under her skin) - which is good because she loves that thing. The Hickman line will be placed in her chest on the opposite side. So she will in fact have two ports.

The best route is to get the Hickman line to go up the jugular vein in her neck - as this is the most direct route and safest. The surgeon seemed a bit concerned as to whether or not he will be able to fit it there. If it is unable to go in this way they will have to put it up under her clavical. This runs a higher risk of puncturing the lung - which he said if that happens they will put a tube in her side to release the pressure until the lung heals.

Surgery is scheduled at 7am on June 26th - we are required to be there by 6am. Once surgery is finished she will go in to recovery and then will be admitted in to the Inpatient Pedatric Oncology building. She will then begin her chemotherapy (Hi Cy) that day - beginning her isolation and rebuilding of her body.

Tracker at the surgeon's waiting room

After meeting with the surgeon Kris took Haven over to Cardiology to have their workup done. She had an Echo and an EKG. Then over to Oncology for lab work. He said he was concerned with how much blood they took that he got Haven a wheelchair. She told me it was 10 tubes. She does so well with all of this it's amazing.

After that they met me at TGI Fridays (Haven's favorite place) to have dinner. Haven was allowed to have anything she wanted (within reason of course). She picked Macaroni and Cheese and Broccoli. She never has Mac-n-Cheese so she was super excited.

Tomorrow we will be in Oncology by 7:30am to do more labs and a Cortisol check from Endocrine. At 9am we have a CT scan of the head, chest, and abdomen. After the CT scan we will head back to Oncology to meet with her doctors and sign all the consent forms and review again what the procedure is and all of the risks involved.

Then this is Haven's last weekend at home. My mom flew back in from Korea 2 weeks early last Friday as a surprise. She is going to make Haven a huge Korean dinner this weekend - Bulgogi.....I can't wait!!!! My plan is to do absolutely nothing except maybe take her to a movie of her choice.

Thank you to everyone for constantly inquiring about our baby. She is doing well right now. I know she doesn't fully understand everything and we haven't told her that she's not coming home yet. That will be next week. Right now we are just enjoying every minute we can with her.

Love to all