As most everyone knew, we took Isaiah back up to Duke University on Monday & Tuesday (26-27 Jan 2009) for a him to undergo surgery for a port-a-cath and a couple other visits. The port was put in Isaiah's chest on Tuesday. He is recovering well, playing and being himself, but can't stand up straight or move around that much. We're giving him over-the-counter Motrin to help with any pain. The port is a little smaller than a quarter and is completely under the skin. The top is soft and will allow one location to administer chemotherapy, IV fluids, and draw blood. The port has a tube that runs under Isaiah's collar bone into a main artery. The medicine will flow from the port - artery - heart - entire body.
Isaiah also had a lumbar puncture to remove a small sample of spinal fluid. The fluid was sent off to pathology to confirm/deny the presence of cancer cells. There is a very small chance (~under 1%) that cancer cells will be present. Chemotherapy is scheduled to start on Monday and Tuesday. Erica, Isaiah, Sarah and I will stay overnight in Durham ... we've had enough of waking up at 3am two days in a row and making the 2 hour commute. Erica's parents will stay with Levi while we're gone.
On Monday we had pre-op screening where Isaiah had basic vitals taken and we were given a tour of the waiting and recovery area. After our tour of Duke's pediatric surgery area in the Children's Hospital, we sat down with a child life specialist who talked with Isaiah, showed him a port, and prepared him mentally for surgery. Our experience at the Duke Children's Hospital was much more enjoyable than our two previous times over at the Duke Eye Center. Not that anything previously went wrong ... the Chilren's Hospital deals with children, so Isaiah was more calm and coped better. After Isaiah was finished with the child life specialist we ate lunch and took a tour of the Pediatric Hematology/Oncology floor where Isaiah will receive chemotherapy. I think this is where reality set in a little more for me, but also made Erica and I feel a lot better. There were other little kids who were going through chemo and radiation. I hate seeing children suffer and having to fight cancer, as I'm sure most people do. There was one little girl that tried to get Isaiah to play cars with her. She was completely bald from her six rounds of chemo. Isaiah is very shy and kept turning his face away. I could tell that she was sad she didn't get to play with Isaiah. Right before we were called into the back, she said she thought Isaiah didn't want to play with her because of the way she looked. This broke my heart ... I told her that Isaiah was shy and it had nothing to do with her ... she was a beautiful girl.
Isaiah's Pediatric Oncologist, Dr. B., walked us through the planned chemotherapy regimen again and answered our questions. When we were done we walked down for Isaiah to have a hearing test.
Tuesday, Isaiah had the port put in his chest and the lumbar puncture. Before we left the house at 4am to drive to Duke, I found the plastic conformer from Isaiah's left eye sitting in his carseat. It probably came out on our drive home Monday evening. The conformer is to protect the implant surgically attached to Isaiah's eye muscles after the eye affected with Retinoblastoma was removed. Our orders from his Opthalmologist stated if the conformer came out to take him immediately to a pediatric opthalmologist who would put it back in. Erica and I told the nurse as soon as we were taken back to prep Isaiah for surgery the conformer came, so an opthalmologist could come over while he was under anesthesia to put it back in. After several calls and talking to a couple of lazy residents and fellows, a resident opthalmologist finally came over and put it back in. Our issue was the couple residents and fellows the nurse or I spoke with wanted another surgeon, doctor, and parent to put it back in. Then we were told that if noone felt comfortable putting it back in, to bring Isaiah over to the Eye Center after surgery. This situation made us angry. All we needed was a trained opthamologist to think about a toddler and get off their rear to walk over and put it back in when Isaiah had no clue or memory of it happening. Isaiah's attending opthalmologist had the resident who gave me lip, walk over and put the conformer back in while Isaiah was still in surgery. There was nothing to worry about in the end.
The surgery went well. I took Isaiah back again to be put under anesthesia. The two previous times for an EUA and enucleation were pretty rough on me. This time was better. The anesthesiologist asked Isaiah if he wanted to go to outer space (his hospital gown had spacemen on it). He then gave Isaiah a "space mask" for him and his piggy. The "space masks" were the masks used to put him to sleep. Isaiah and I walked back to the OR. Shrek was playing on a large flat screen TV on the wall and on a smaller swivel screen right above the operating table. The anesthesiologist told Isaiah it was time to go to the moon, so it was time to put the mask on. He asked Isaiah to put piggy's mask on, which he did. Then we put Isaiah's mask on. The doctor asked if I wanted to give Isaiah a kiss before I leave, which I did. The previous times at the Eye Center, the anesthesiologist seemed very impersonal and wanted me out of the OR once I "did my part". A doctor called back to Erica and I in the waiting room to inform us the surgeon had put the port in and the oncologist was getting ready to do the lumbar puncture. The surgeon and Isaiah's oncologist came out once they were done to talk to us. The entire situation was very pleasant and easier to deal with.
About piggy ... Isaiah carrys a Piglet stuffed animal with him everywhere. Erica bought this for him when he was about 1 year old because he acts just like him, not as melodramatic though. It was very good to see Isaiah interact with the doctors this time and incorporate Piggy.
As I mentioned above, Isaiah will undergo his first round of chemo on 2-3 February. He'll have blood draws every Monday to make sure his white, red, and platlet blood levels are safe. Because chemotherapy will immunocompromise Isaiah, we'll keep having these tests, keep him away from public environments and sick people. Erica and I greatly appreciate everyone's help. It is such a blessing to have great people like you to pray for Isaiah and help us through this. Please continue to keep Isaiah in your prayers and pray for other children going through the same.
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