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| 17 sutures. His own Voldemort scar. |
So let's just start out by saying Ethan's surgery Wednesday could not have been any more of a success. We can finally breathe again.
We took him into CHOP at 7:45 Wednesday morning and they ended up wheeling him out to the OR around 10:20. That was probably the worst thing I have ever had to endure in this lifetime. It was what I dreaded the most heading into the surgery. The actual "Goodbye, Ethan. I'll see you soon". We were then told that the OR had been booked for a 4 hour window and that updates would be provided every hour by a nurse who makes the rounds through each of the OR's for the purpose of keeping concerned parents in the loop.
So after a good cry and a bit of regrouping, Adam and I headed off to the cafeteria to meet my mom, Adam's mother Mary, his father Joe and step-mother Jacque. We killed about an hour and then headed back upstairs. Within minutes, Linda the OR nurse came out to give us our first update. She informed us that the surgery got under way about 11:20. That Ethan tolerated "being put under" well and that the surgery had begun. We were relieved by this news. I knew he would be in good hands. His anesthesiologist was a really chanrming and down to earth middle aged woman who looked to be about 7 months pregnant. I felt that a physician carrying a child would be that much more inclined to see my child successfully through a procedure such as this.
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| Cool as a cucumber. |
And hour later (about 12:45 p.m.) nurse Linda returned and began by saying... "you didn't hear this from me, but the tumor is out." Apparently Dr. Sutton chooses not to provide too much detail concerning his progress during surgeries. She told us they would be closing Ethan up and would begin the process of bringing him back around over the course of an hour. She informed us to stay put because Dr. Sutton would only seek us out in the surgical waiting room ONCE. If we were to miss him, well then we would be shit out of luck (for lack of a better term). Linda told us Dr. Sutton was unlike most surgeons who exit the waiting room immediately after their "part" is done. She said he chooses to instead watch how his patients come up out of the anesthesia. She said he pulls his little stool over right next to the patient and watches them like a hawk, as he looks for any suspicious behavior which might have indicated any neurological problems. And so, about 1:30 Dr. Sutton entered the waiting room. I cannot tell you how much I love this man. No matter what anyone could ever say about his demeanor or bedside manner... I feel a connection to him. I believe our paths were indeed meant to cross. He said the surgery went well. that he achieved a full resection of the mass, minus the diffuse cells which had spread into the inferior peduncle. He felt that attempting to remove them would have done Ethan more harm than good. He said Ethan had come out of the anesthesia with very good strength in both of his arms and legs with no sign of any tremor or deficit. He felt that it was unlikely he would develop hydrocephalus because the tumor was so small and was far enough away from any of the ventricles in his brain. Dr. Sutton informed us that we would be seen by the Oncology team at CHOP but he suspected that they would not be recommending chemotherapy and would choose to monitor any potential growth with MRI's every 3 months. He also shared with us the preliminary path report which indicated that this was a low grade atrocytoma, much like he had expected. He took the time to answer all of our questions... and then he left. And that is the last time hopefully we will ever see Dr. Sutton. After the tumor is out, he is off the case and Ethan's follow-up care will now be in the hands of the Oncology team. It makes you sort of pause. Just 4 hours of this man's time, just 4 hours of interacting with our unconscious son may go on to be the four most important hours of Ethan's life. He came in, he helped to improve our son's life...and then he just moved on. I wanted to throw my arms around this man. But I knew that was something that you just don't do with Dr. Sutton. I fought back the tears, and a couple ended up streaming down my face. He looked at me and said, "I know you struggled with this decision, but you did the right thing." and then he walked off. I will always hold that man in the highest regard everyday for the rest of my life. No matter how surly or distant or misunderstood he may be... he is definitely my hero.
So Ethan was up in the ICU no more than a half hour later and he was combative and confused and very scared. But over the two days which followed, he started to turn the corner. The nurses in this hospital have to be the strongest women and men on the planet. To give of themselves every day to some of the sickest children in the country has got to be very trying and let me tell you... they are a gifted GIFTED bunch. We are so appreciative of the attention and concern they afforded our son. They readily accommodated any request we had, they answered all of our questions and they tried to ease our anxiety over watching our son struggle through the worst pain he has possibly ever been in. We owe them a debt of gratitude.
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| Pilocytic Astrocytoma (Microscopic) |
Yesterday we were moved off of the unit to the 3rd floor. The oncology unit. I walked these hallways thinking to myself.... god, are we fortunate. Babies, toddlers, children that were Ethan's age and teens...all suffering from various cancers. Beautiful bald angels. It's gut wrenching to see. Which made me all the more anxious as our meeting with oncology approached yesterday. Late in the afternoon the final pathology report on Ethan's tumor was in. Oncology called a meeting with Adam and I along with extending the offer to our parents. We met in a small conference room with Dr. Michael Fisher who will be Ethan's oncology doctor. We shut the door, and he handed down the news. THE VERY GOOD NEWS.
Ethan's tumor is a Pilocytic Astrocytoma. It is a Grade 1 tumor. First, Dr. Fisher indicated that based upon an MRI completed the day after surgery, they felt confident that Dr. Sutton had achieved a Gross Total Resection of the mass. However, it was a near total resection when you account for the diffuse margins of tumor cells left behind in the peduncle. But according to the MRI, the mass was completely gone with no signs of tumor showing up on the post-op MRI. Dr. Fisher went on to explain that Pilocytic Astrocytomas rarely, if ever spread or metastasize in other areas of the brain or central nervous system. Because of this, Ethan will not require MRI's of the spine or brain stem. Dr. Fisher said that they rarely if ever change from a Grade 1 tumor to a higher grade. If Ethan had been diagnosed with a grade 2, these very often turn into aggressive Grade 3-4 tumors later on in a child's life. While Ethan's tumor COULD regrow, if it did, it would most likely arise in the same section of the brain where this initial tumor arose. But Dr. Fisher indicated that there is know knowing if Ethan's tumor was actually growing at all when we found it. He said there are 80 year olds who have lived their entire lives with Grade 1 astrocytomas and never had knowledge that a tumor was there. So, because this tumor is not what we would consider life threatening, it was Dr. Fisher's recommendation that we follow the tumor with MRI's completed at 3-month intervals for the first year, then 6 month intervals the second year and then we will move to yearly scans... after which, if there is no growth and no data to go on... then we can consider this a success. Dr. Fisher said he believes that Ethan's prognosis is really good. This was a small tumor that was almost fully resected. Dr. Fisher believes that his chances for living a long and full life are very good.
After the meeting, we were all elated and shed quite a few tears. Now we begin the rehabilitation piece. Ethan has ataxia (unsteady gait) and walks as if he has just knocked back about 5 dirty martini's. He has had a bit of double vision. He's nauseous and in a significant amount of pain. But this should pass in a few weeks. This morning I awoke to find him assembling a LEGO's Star Wars kit in his bed while I had been sleeping. Less than 36 hours after major brain surgery, the kid can still put a model together. Not too shabby. We are so proud of Ethan. His courage, his resilience, his determination just amazes us. We are very fortunate that we found this tumor when we did. We are so fortunate to have such a wonderful team of physicians. And we are SO fortunate to have so many wonderful friends and family who have helped us during this process. We appreciate every single prayer our son has received from those that we know and those who are simply concerned strangers. We are moved by the fact that our son and his well being has netted us the goodwill and support of those both near and far. Our old friend, our new friends and even the friends of our friends who became aware of Ethan's diagnosis. We thank you all from the very bottom of our hearts.
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