Josephs post-op follow-up with his neurosurgeon last week went so well. Dr. Cohen gave us all the time in the world. He was so wonderful, as he always has been. What a difference it was to really be able to hear and process every detail, being on this side of Josephs diagnosis, a Grade 2 Meningioma, that was non-cancerous. Though Dr. Cohen again reminded us how life-threatening this tumor was, due to the size of it and because it had created so much pressure, pushing Josephs brain over. There wasnt any more room for the tumor to grow, no place else for his brain to go. Matter was actually pushing out through the opening at the base of his skull. Dr. Cohen told us it was the biggest tumor he has seen. Wow. Still so unbelievable to me. They think it was growing in his head his whole life, possibly since he was in utero. Fran and I actually saw the entire surgery, step by step, through images, on Dr. Cohens laptop. He took us through his PowerPoint presentation for the Harvard Medical School class he teaches on neurosurgery, using Josephs surgery to teach HOW to operate on a big vascular tumor like his. It was like sitting in class for sure but knowing we were looking at the step by step process of the surgery: from the various pre-op pictures, showing the size of the tumor and all of the swelling around the brain from different angles; to the brain being pushed over from the swelling; to the initial question mark shaped drawing of where the incision would go on the right side of his head; to the actual incision; to opening up the head; opening up the skull; seeing his brain; seeing the tumor sitting on the brain; seeing the tumor being cut away, having to core it like an apple; seeing his brain pop up because of the pressure relieved after the tumor was removed and still all of swelling around the brain. It was all so fascinating and still so surreal. Incredible too because I usually have a weak stomach for even hearing descriptions of details like this, never mind seeing actual pictures, but it wasnt gory. It was simply amazing to see what this brilliant and talented doctor was able to do to save our sons life. He saved Josephs life. The blessing we received that he, the Chief of Neurosurgery, came in to perform this craniotomy on Joseph, on an early Sunday morning, for 10 hours, when he wasnt even in call. Beyond grateful and quite certain God was watching over Joseph the entire time. In retrospect, I can now finally process and understand, that they just couldnt believe what they were seeing, especially given the apparently healthy looking child they were staring at. I get why the other neurosurgeon who come down to the ER said to me, the reason why everyone appears to be freaking out around here is because of the size of the tumor. He was the first person in the ER to use the word tumor. The other docs and nurses were referring to it as a mass and nobody would really identify the size to us. I realize now that they were all deferring it to this neurosurgeon, Dr. Raber, who once he arrived in the ER, would stay on the case, with the addition of Dr. Cohen. We found out later that this was a case the hospital would be discussing and looking at the pictures long after we left the hospital. A miracle. Really. Dr. Raber would eventually be the doc to shave Josephs head. In turn, once Joseph was out of ICU, on the Neurology floor and was walking to his bathroom where there would be a mirror in front of his face, he would eventually tell Dr. Raber, repeatedly, that he was going to shave his head. This poor guy had been nothing but amazing to our family. We were in total gratitude and Joseph just wanted to shave this doctors head and spin him (and Dr. Cohen too) up in a spidey web! He could only see these people as hurting him- shaving his hair off, cutting his head, stabbing him with needles, making him take meds, causing him to be in pain and not being able to open his eye. You have to remember, Joseph was apparently healthy walking in to the hospital. He wasnt sick. I think after this last visit to Dr. Cohen, Joseph finally came around. He finally got that they helped him. All along weve been explaining how they saved his life, that they took that big ball out of his head that was causing his headaches. But this last visit to Dr. Cohen was in his actual office, not a typical exam room. This was an office filled with Elvis paraphernalia, designations, awards, accolades, certificates, degrees, autographed photos, scary Halloween decor... It was very different and much more relaxed. It was actually kinda fun for Joseph. As far as the nature if the visit, there was still some internal swelling, as to be expected, given the amount of swelling and pressure there had been. Due to the type of the surgery and the location of the tumor, theres a chance of seizures, so hell remain on anti-seizure meds for another 2 months. Dr. Cohen was very impressed with Josephs strength and vision, especially his field of vision, from what he could tell without a full eye exam . In early December, well follow up with Dr. Manly, the Neuro Oncologist, for MRIs, at Dana Farber. That will continue every 3 months for the first year. Next up, the plan for this week is to integrate Joseph in to his Kindergarten class at Derby Academy, part-time! Tomorrow, we are meeting with the Head of Lower School and all of his teachers. Then Tuesday, Joseph has a full eye exam and a vision field test, with Dr. Hilary Williams. BTW, any local friends looking for an eye doctor, please GO TO HER (in Hull)! Shes amazing and all of her staff are just as wonderful. Dont put off eye exams! Its incredible what the eyes can tell; the windows to the soul (and children should start full eye exams as early as 3). Meanwhile, Im coming out of the fog. Its hard to believe its almost Josephs 6th birthday (October 24th) and Halloween. I still have traces of summer and Labor Day weekend in the cars. I feel like I froze and time stood still. I couldnt do or think about anything else. It felt like forever, yet I am so grateful that it was only this short length of time. I think about the children and their families, making trips back and forth to Childrens, for treatments and return stays. I feel for them. I pray for them. I dont know what I would have done had the diagnosis been any different and I we had to return for another stay. The last words out of Josephs mouth, before we left ICU, still ring in my head. He had just had another blood draw, to be sure he could stay off specific meds. He was crying and said, I dont want anymore needles. What do I have to do to NOT be stuck with anymore needles?! JAB! Ouch! That completely broke my heart, as if HE did something wrong and could do something to keep from getting them! Well, I would say his amazing, beautiful spirit helped. But as a mother, in that moment, how could I make that promise to him? Or tell him there was something he could do to avoid anther needle?! I prayed non-stop and so hard that he would NOT have another needle stuck in him. THANK GOD he did not! That was the last blood draw he had. From that point on, one by one, his IVs came out (he had at least 6 in his arms and ankles), until the day he was discharged. I cant even tell you how relieved I was. Another blessing. As I have said all along, through this whole experience, for every moment that something could have gone in the wrong direction or could have been the result we wouldnt have wanted for Joseph, he has had the best possible outcome. We experienced nothing but blessings, every step of the way. AMEN.
Posted on: Sun, 19 Oct 2014 17:23:02 +0000
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