I have always noticed that Stella has a bit of a lopsided face at times, but I thought that is just the way she was. It was cute. In late March, Stella had a fall and had some stitches above her left eye. In April or May, Stella's face started showing signs of what looked like minor Bells Palsy on the left side of her face. We thought it may be because of her fall. After watching it for a while and noticing that it was not improving but was getting progressively worse, we finally took her to her pediatrician, who scheduled an MRI of her brain to take place on July 1. By that time, Stella's left eye was not blinking very often and her smile was very lopsided.
The morning of July 1, Stella had a bit of a fever, so the anesthesiologist suggested we reschedule until July 5. Her fever had receded by late morning, so I took took Stella to her pediatric opthamologist appointment that she had scheduled the afternoon of July 1. Her pediatric opthamologist noted that her left eye was having problems with lateral eye movement and thought there was pressure on the 6th and 7th cranial nerves. He told me to make sure Stella did not miss her MRI on Friday. Needless to say, I was a bit concerned after that appointment.
Because of the opthamologist's comments, I called my pediatrician and asked if he could order the MRI to be read immediately and scheduled an appointment for 3:00 p.m. on July 5 with my pediatrician so he could give me the results of the MRI. I was certain the MRI would show nothing wrong other than maybe some nerve damage due to her fall, but the opthamologist's comments made me a little worried and I didn't want to wait several days to find out the results.
On Friday, July 5, 2013, we checked into the hospital at 7 a.m. Rob's parents were in town visiting, and my wonderful father-in-law (a retired surgeon) came with me to the procedure. They do the MRI's for the little ones first thing in the morning since they have to go under general anesthesia and cannot eat anything prior to the procedure. We were done with the MRI and out the door heading home by around 10 a.m. On the drive home my phone started ringing. My phone was in the backseat and I could not reach it, but I probably received 4 calls on the drive home. When I got home, I had a voicemail from Stella's pediatrician asking to call immediately, and also a voicemail from Rob (who had been at work up in Tahoe) saying that Stella's pediatrician's office had called him and they wanted us to come in immediately. I called the pediatrician's office, they said to come in immediately and to bring Stella. It was pretty clear then that something was wrong.
Rob's dad, Stella and I headed to the pediatrician's office. Rob got there shortly thereafter. Once there, our pediatrician, Dr. Hall, came and told us that Stella had a 3cm brain tumor near her brainstem. I don't remember much else of what he said, other than we needed to go to Children's Hospital in Oakland immediately and he had already been in contact with the neurosurgery department at Children's Hospital and they were waiting for us. Dr. Hall had to decide whether to put her on a helicopter to transport her to Children's, or whether she was stable enough for us to transport by car if we wanted. They would not let one of us ride the helicopter with her, so we told them we preferred to drive her to Oakland unless it was medically necessary for her to be transported by helicopter. Thankfully, the Dr. said we could drive her. Rob and I went home, packed a small bag and started driving.
Talk about a long drive. It took us about 5 hours to get to the hospital, and we hit traffic along the way. Of course, we were searching the web the whole time for any information we could find based on the limited items we knew: 3cm brain tumor, brain stem, 6th and 7th cranial nerve, her age, etc. Everything we found was terrifying. By the time we got to the hospital at around 6:45 p.m., we were completely freaked out. It did not help matters that we kept receiving calls from the hospital along the way checking our progress to see where we were, how Stella was doing, and our ETA.
It was not until about 9 or 10 p.m. that we were able to see the neurosurgeon. Stella had been examined by several other doctors by that time and was pretty tired. Dr. Sun, the Director of Neurosurgery came in and the first thing we asked was - what are we dealing with, is she going to die? Dr. Sun told us he believed this tumor was treatable and possibly curable and we were finally able to breathe again.
We were moved to the ICU at about 11 p.m. that night and were grateful to be put in the isolation room, which is the only room with some privacy in the ICU. We stayed in the ICU for the next nine days. She was just monitored over the weekend and was put on a steroid (dexamethasone, I think) to reduce the swelling in her brain. On Sunday, I met with Dr. Sun to go over her July 5 MRI and discuss the plan moving forward. He showed me the MRI and explained that he would not be able to get the tumor out of the brainstem but would remove everything else that he safely could remove. Based on the way the tumor looked on the first MRI, Dr. Sun thought it was probably a malignant tumor and was concerned about other tumors in her nervous system. When I asked him what her chances were, he said "greater than 50/50" if this was the only tumor, and much less favorable if she had additional tumors in her spine. She was scheduled to have an MRI of her brain and spine the following day - Monday. Needless to say I was a nervous wreck. Hearing "greater than 50/50" didn't make me feel very good, and that was the better option of the two discussed!
Monday Stella had the MRI of her brain and spine. This took almost 3 hours and required her to be under general anesthesia. Thankfully, the MRIs showed her spine was clear and there were no other tumors in her brain. Talk about a huge relief. . . . As an aside, for those with little ones who have never gone under general anesthesia, let me warn you that as a parent one of the hardest things is watching your child get knocked out. The doctors will let you stay with your baby while they put the mask on until your child falls asleep. There is almost nothing worse than watching your child looking at you while they scream, cry and struggle to pull the gas mask off. All the while you are trying to console them, and then their eyes roll back and they go limp. Then you have to leave the room while they put in IVs, etc., and prepare for the procedure. It is awful. In the last six weeks, I have watched this happen on five different occasions!
Stella's brain surgery was scheduled for Tuesday morning and throughout the day on Monday she was examined by multiple doctors in preparation for the surgery. We feel incredibly lucky that Dr. Sun was her neurosurgeon. According to everyone in the field, he really is one of the very best.
On Tuesday morning, July 9, at 7:30 a.m., Rob, Stella and I walked to the surgery department. We got to sit with Stella for a bit while we answered questions and spoke with the anesthesiologists and surgeons. Stella's surgery was expected to last anywhere from 12 to 24 hours. We were told not to be surprised or worried if at two in the morning they were not out of surgery.
For Stella's surgery there must have been 15 doctors and nurses in the room. She had two neurosurgeons operating on her, and several persons who do nothing but watch computer monitors that are linked to needles they put all over her body to make sure they are not cutting out any essential parts of her brain. Completely crazy. We received calls every two hours during the surgery letting us know everything was okay. During that time, Rob and I left the hospital and tried to pass the time. We are so lucky to have such wonderful friends and family who have been so supportive during this time. Our friends Stephanie and Fred went out to breakfast with us, and then I went for a walk with Stephanie and Moira down by the bay, while Rob and Fred went and passed the time doing something else.
Stella's surgery finished much more quickly than expected. We got a call around 5:30 or 6 p.m. saying that surgery was finished and they were sewing her up. We met with her doctor in the cafeteria around 6:30 and they told us the surgery went better and quicker than expected. They could not remove the portion of the tumor in her brainstem, but were able to get out almost everything else. The best news was that both neurosurgeons felt like the tumor was low grade and slow growing, and not malignant as originally anticipated. They cautioned us not to get our hopes up until we got the final pathology report, but we were still so relieved (the path report 10 days later confirmed the diagnosis of Pilocytic Astrocytoma). Stella got back to her room around 9 p.m. and was already extubated, but heavily sedated. She really came through the surgery like a champ.
This post is getting way too long, so I think I will end this one here. More to follow. . . Below is a picture of Stella just after surgery. She had IV's coming out of both arms and both legs, a tube in her head, and a PICC line. Poor thing.
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