I wonder how many somber drives home from Gainesville I’ve made in the last twelve years? A hundred? Maybe more? A hundred and one after yesterday. I always wonder why I allow my thoughts to be consumed with bad memories before and after the testing and clinic appointments. Is it to torture myself or is it to remind me how much Jacob has been through, and how much as a family we have overcome? I am almost thankful for the two hour drive home, giving me the much-needed time reflect on the day and to try to find peace before I’m shoved back into life's routines. Finding peace inside me is a huge work in progress. I faithfully pray for this on a daily basis. How can someone find peace in the NF2 storms? At one time, I would’ve found my favorite bar stool, in my favorite bar, called TD and my favorite friend, and drank until I felt no more pain. Yesterday I dwelled on the day I got the call at work that Jacob's scan had shown his bilateral vestibular schawannomas for the first time. The question of Jacob having TS or NF1 was gone. I had been told to be happy Jacob didn't have NF2, and now they were telling me that’s exactly what he has. More dreams crushed! That night was a Pockets night for sure. Casey, thank you for being with me that day and night, crying with me and telling me everything would work out. For the record, I did not get hammered last night, but I definitely thought about opening a bottle of wine and consuming the entire thing to my head as my husband would say! During my drive home, I realized how much I have grown, how much I have changed and how love has altered my life. Loved by God, my husband, my children, my family, my church, and my friends. This love is how I now find peace in the NF2 storms. I’m holding on tight because I feel the weather is about to get worse.
Jacob, Gavin and I went to Shands at the University of Florida yesterday to see Jacob's neurosurgeon, Dr. David Pincus. We see him once a year, or more if there are any problems or questions. We were due to see him in January, but I changed it to February so I would have Jacob's scans from NIH. Then, Dr. Pincus' office changed it to the end of February, and then March, and then April, and finally to May 2nd. I was very frustrated, but I think very highly of Dr. Pincus and value his opinion. I had been waiting for months to see what he thought we should do about Jacob's growing tumors. I sent numerous emails and a very detailed letter attached to Jacob's MRI CD that I mailed, describing the issues we were concerned about and what changes Jacob's scans were showing. I didn't receive any concern in return. I didn't press it because Dr. Smith and Dr. A are watching Jacob so closely, but the feeling was there.
Our wait wasn't a long one to be taken back to the clinic, and it was nice to see Leigh Ann and Dr. Pincus. After saying hello, Dr. Pincus asked me what he should be looking at on Jacob's scans… Really? I found myself huffing internally. His office had been given Jacob's scans from NIH two months ago for them to review and now it was my job to tell them what is of concern? Anyway, I told him about the right frontal lobe tumor, thought to be a low grade glioma, which has grown .5 cm in every direction over the last year. Dismissing that worry, Dr. Pincus is sure that it isn't of great concern based on what their radiologist thinks. And yes, this the same radiologist who said Jacob's right adrenal gland was attached to the tumor he had removed in January… Moving on. I told him that Jacob's VSs are still growing, though growth had slowed with Jacob on the Avastin last year, but still getting big. We talked about seeing Dr. Freeman for radio-surgery on the right VS to attempt to preserve hearing (Please work RAD001!!). I told him the eppys inside Jacob's spinal cord had grown some, but we have been told to leave those alone, that it is best to wait and watch those. He told us about a patient of his who had to have one removed last year, a story I could have done without at the moment. Lastly, I told him about the big concern over the C7 tumor. Dr. Pincus left for a short while and did an exam on Jacob when he returned. After the exam, Dr. Pincus posted up in a chair and said, "Jacob looks great. I am very unhappy about this tumor at C7. It should be removed this summer." My heart dropped into my stomach. What was I expecting though? This isn't the first conversation we've had with a doctor about this evil C7 tumor. Dr. Pincus believes that summer time is good because Jacob is out of school and, in his opinion, we shouldn't wait for it to cause problems. On a side note, this is one of the harder internal debates to cope with as a parent. Having to make a decision to have a very intrusive surgery when there are no visible signs of affliction. It devastates me. Anyways, Jacob is still strong on his left side and other than some slight "hooking" in his ring and pinky fingers, he isn't showing any signs that the C7 tumor is doing damage. Dr. Pincus also said he would do small fusing of the spine after removing the tumor. I asked about recovery and damage to Jacob's left hand and left side. Dr. Pincus said he feels like the tumor could safely be removed. This is the second neurosurgeon to NOT go over the major risks of surgery with me, talking to me about the surgery as if it were easy breezy. I want the whole truth and nothing but the truth! I know, without a doubt, this is a huge and serious surgery. Things like complete paralysis could happen. I did tell Dr. Pincus that we also had an interest in having the surgery at NIH when the time comes to help with their studies. Dr. Pincus said the tumor could be sent to NIH if that would help us with our decision. Jacob went on to have a casual conversation with Dr. Pincus about the deer he killed and his summer plans. My mind whirled and continues to spin now.
Jacob and I talked about it on the way home before he fell asleep and he said he doesn't have a preference as to which doctor or which hospital he has the spinal surgery. Jacob and I both agree that NIH is special because of their commitment to finding a cure for NF2 and their outstanding care for their patients. I think both Dr. Pincus and Dr. Asthagiri are capable. Jacob and I like both doctors very much. I am concerned about Dr. A not wanting to fuse Jacob's spine at the time of surgery. I am concerned about Shands being so busy (Dr. Pincus' excuse as to why we kept getting bumped) and the arrogance (or over- confidence?) that this surgery is not complicated.
I put in a call to Dr. Asthagiri and will feel better after I speak to him. Jacob says he's "ok" and we are praying that this new medicine Jacob is on is going to be miraculous.