Has it really been almost 2 months since my last update? Wow, time flies. Quite a lot has happened for Jenelle since our last update, all of it being very good.
Jenelle finally finished the wean off of Banzel just days before our follow up visit to Dr. Shields. Amazingly, Banzel must have been the culprit that increased Jenelle's seizures because as we weaned, her seizures were better. Jenelle went from having a tonic clonic (grand mal) every 3 days or sooner, to one seizure every two weeks. It was an amazing improvement, and I'm grateful to have her off that medication.
Jenelle and I did a marathon visit to UCLA on November 21st, where she had a follow up with Dr. Shields, and I had a follow up with Dr. Territo. We saw Dr. Shields first without any wait - in fact, we got into our exam room 10 minute early! He was very pleased to see her more alert (remember last time she had a seizure on the way to UCLA and pretty much slept the entire appointment.) He wants to keep her medications the same for the next few months since the Banzel wean took so long. The new drug he wanted us to try is to finally be approved by the FDA in the first part of the new year, so we'll discuss it again at her follow up in February or March. He did increase her existing meds to adjust to her weight increase - Jenelle is now a solid 56 pounds!
From our appointment in pediatric neurology, Jenelle and I went to oncology to check in for my blood draw and appointment with Dr. Territo. While they took me right away for my blood draw, we were not so lucky waiting for Dr. Territo for two and a half hours. Jenelle was a trooper, and Dr. Territo appreciated our patience. All of the nurses love Jenelle and she and I strolled the halls to visit everyone.
As for my update, I'm feeling good since finishing chemo in August. I definitely feel less tired, and am ready to take on more. Unfortunately, I've been battling the sore throat, sinus infection that has made its rounds and it feels like one step forward, two steps back. My blood work showed that my immune system was rebounding, but of course with the sinus illness, my white count was elevated. Everything else was pretty close to normal. Dr. Territo wants me to stay on limited work until at least the end of the year. It's difficult to tell if I'm getting sick because of my weakened immune system from the chemo, or if I'm just getting sick. She agreed it would be good to start pushing myself more and possibly adding hours to my work day, but to listen to my body and be extra cautious. I've started to try to go back to work on Friday mornings, and of course we've been pretty busy having two bench trials in December. I see improvement, and appreciate the advice to take it easy.
Back to Jenelle, after our follow up with Dr. Shields, Jenelle went almost one month without a grand mal! That is part of the reason I hadn't updated - I knew the second I bragged about the improvement, she would have a seizure. All went well until one evening in early December when Jenelle had 3 grand mals over 4 minutes within less than 3 hours. After the third seizure, I simply gave her Diastat even though she wasn't seizing. I didn't want to fight a cluster of grand mals, and the Diastat seemed to do the trick. She perked up just after the dose to let me know she was OK, and then slept the rest of the evening. Since completing the Banzel wean, the seizures have been notably less, but we've had days where she has had quite a few one on top of the other. In all honesty, I think she's having them every two weeks or so, the last being at 6AM on Christmas Morning! Poor Jenelle slept all morning through the excitement of toys and opening presents. Santa was very good to her, and she loves all her new toys.
And as if that wasn't enough keeping on top of my cold and Jenelle's seizures - Jack added himself to the injured list. The Saturday after Thanksgiving, Jack was playing football in the front yard with some friends. During one tackle play, a friend's knee went into Jack's mouth and broke his two front adult teeth at the root, as well as a hair line fracture to the maxilla palliate. With all the times I've watched Jenelle be poked and prodded in the ER, it was not so easy watching two dental students shove Jack's teeth back into his swollen gums, and apply a brace to keep them steady. It was a very severe trauma, but the oral surgeon thinks we might be lucky to simply walk away with root canal for both teeth. Right now, Jack is on a liquid, soft food diet and under strict orders to not chew or move those front teeth. He goes back to the oral surgeon on the 3rd to see if the teeth have died. If so, then all four front teeth will be removed and he will have a bridge. Amazing to think root canal is the best possible outcome in this scenario!
Finally, I want to share that on Halloween my Dad called to tell me he had been diagnosed with Multiple Myleoma. Mom and Dad are still in Visalia, and his oncologist along with 5 other doctors are there as well. Dad wasn't sure the information was accurate, and was concerned because there were no treatment options. Dad just turned 83, and from my own cancer experience, I can understand why there are no options at his age. Immediately, I got his recent labs and called Dr. Territo for a second opinion. Her nurse Karolina reviewed his labs and set up an appointment with Dr. Territo as quickly as possible. Dad has been having a lot of pain with neuropothy in his feet (which is a symptom of myeloma), and has been unable to make long drives. He has also lost 30 pounds, and is quite fatigued. My sister Norma drove down from San Francisco to drive Mom and Dad down to UCLA where I was able to meet them for Dad's appointment with Dr. Territo. As expected, Dr. Territo was wonderful and we got some encouraging news; Dr. Territo thinks that Dad has something called MGUS, which is "pre-myeloma", and not myeloma just yet. She agreed there was not much to be concerned with right now, but his other symptoms were a concern. She wants her own tests and lab work, and will be following Dad very closely. Once again, I feel so blessed to have UCLA so close to home.
We had a wonderful Christmas and we've been spending lots of time together playing games, reading and watching football. Jack is going to have a New Year's eve party for his 11th birthday, and we are slowly ending the year on a rested note. I will post photos separately so as to give you time to catch up on this long update. Perhaps my New Year's resolution should be a goal to update more - the good or the bad, just to let you know we are OK. As always, we are thankful for your prayers and support. Blessings to you all in the coming new year!