The wifi is not working well at the Children's Inn tonight, so I'm going to do my best from my phone…
I'm not going to complain about how tired I am from not sleeping well and then being up at 5:30 am for Jacob's chemo dose, and then again at 6:30 am for clinic. I could be sleeping and not writing this post while watching football, so that was not a complaint! And, whoa, what a game for Bama. Notre Dame is making Alabama’s entire team look like professionals tonight. Looks like TD is going to win his bet, or really his series of picks, which isn't much, but I still want to dance a little jig and sing “show me the money.” Hehe!
For an all-day adventure at Clinical Building 10, today went fairly well. Jacob got up without a fight and we were at Peds Oncology by 7:55. It wasn't early enough for me to have time to get coffee, but I survived. Jacob had some donuts that I picked up on our way out of the Inn and, for the first time in 3 years, we rode the bus up the hill instead of walking. Jacob didn't want to walk. He's lost so much weight, any activity has become tiring. We originally thought the weight loss was from surgery, but since its continuing I'm worried it's medicine-related. I've talked to Jacob's nurse at Arnold Palmer and we will be discussing a possible seizure drug change after Jacob's appointment in Orlando in a few weeks. There is one other seizure medication that can be taken with the chemo he's currently on. Back to our day… We rode the bus and proceeded to sit in clinic for an hour, waiting. Our wonderful, on-top-of-everything nurse, Kim, wasn't in today and they couldn't find Jacob's paperwork for his labs. Finally, Rovella, our research nurse, came down and brought the needed paperwork. I was happy to see Rovella and we had a nice chat. Rovella called up to Audiology so Jacob could get bagels and I could get coffee.
While Jacob finished up his second breakfast, I talked with Chris, Jacob's Audiologist. For some reason they switched Jacob to balance testing today. After only an hour, Chris and Jacob appeared due to a broken monocular camera. One of the machines they use for vestibular testing uses data collected from the eyes, with Jacob only having one eye, they have to use a singular camera to obtain accurate information. So Jac will go back on Wednesday for hearing and more balance testing. Chris did say that even with inconclusive testing, Jacob's balance has definitely changed for the worse. He explained the three ways our body and balance work as a whole. Since Jacob's vision hasn't changed and his vestibular senses (hearing and balance nerves) still really have no response, Chris believes that it's postural structure causing J's balance issues. I thought this was good news because if the stumbling and losing his footing is from his surgery in August, then hopefully it has nothing to do with his vestibular schawannomas growing. It also means that it’s possible with aggressive therapy that his balance could improve. None of this information is confirmed, but it's all I know for now. Time for EVERYONE to encourage Jacob to start working on his posture and strength!
After OP5, Jacob and I had lunch. I am on Mission: Feed Jacob, as the rest of the family is. He initially lost 10 lbs after his cervical surgery in August and never gained it back. We spent several months talking with Jacob about making good food choices, eating more often and consuming more protein. We put him on protein drinks. Over the holiday, I haven’t been so persistent. I let Jacob sleep as late as he wanted, stay up late and do his own thing. I wanted his break to be stress free. He had meals with us, and I assumed everything was continuing the same, but I wasn't trying to get him to eat constantly. Last week I noticed he looked thinner and had him hop on the scale. I was shocked to tears that he was down to 105 lbs. After that, we have all been back on the mission. I was so happy that he was back up to 110 lbs yesterday morning in clinic. (He's been 112 lbs since surgery in August.) Jacob and I had plenty of time to eat lunch and relax on the sunny side of the basement cafeteria.
Jacob's MRI started right on time at 12:15 and, as usual, he was not done in the two hours promised. It's always a lie!
After MRI we went back to Peds Oncology to have Jacob's port de-accessed and got our freedom.
Jacob and I hit up the second floor cafeteria for a second lunch and ran into Dr. Kebebew. He saw us separately and Jacob told him he was doing "great." My response was, "not so great." Dr. Kebebew said he would look at Jacob's MRI from today and see if there is anything he has to offer Dr. A. I should’ve talked to him about the numbness in J's abdomen, but I didn't think it was the right time.
Our afternoon and evening have been relaxing. I spent a long time working on Team Jacob G!: Battle NF2 Cupid Undie Run Orlando donation site, sending out emails and such. Jacob and Savannah hung out and seemed to be very happy.
Tomorrow Jacob has a CT, his last MRI and an appointment to see Dr. Kathy Warren in Oncology. I’m looking forward to picking her brain about the medicines (and side effects of said medicines) that Jacob is on.
NIH clinic day one, check!