For most of the last 9 years, our lives have been lived in "crisis" mode. And any therapist will agree, after the crisis is over, that is when the real fear and potential depression can set in. Our family is now entering new territory; one filled with some stability for Jenelle, and no more chemo for me.
Let's begin with Jenelle. We are almost completely off Banzel, and with that we are seeing some stability again with her seizures. The definition of that stability being a grand mal once every week or more, instead of almost every 3 days. She has done really well with the transition to her new school. In the beginning, she was very lethargic because of the new routine. Typical Jenelle always found ways to test her new teachers. For all that she does not say in words, I can read her like a book, and I know when she lets her care givers do the work for her.
We are in the process of working on her IEP which started a few weeks ago. Her IEP this year is a tri-annual IEP, meaning she goes through thorough evaluations again. This is perfect timing in that her new program will get to fully evaluate her abilities, and adjust her goals accordingly. Her class is wonderful and really strives on being an inclusive, typical class with the rest of the school as opposed to a separate program altogether. This means she wears uniforms to school, and participates in all school functions, like fundraising, PTO programs and Assemblies. She's growing up, and adjusting well to the difference from her old school.
I couldn't be more pleased with the YMCA Inclusion program that has taken over for her after school care. Jenelle has a one on one aide, funded by Regional Center, and seems to fit in well with the rest of the group of kids her age. We've been very fortunate in that her aide is the same person each day - not something I expected. Jennifer, her Y Aide has a college degree, and interest in learning more about special needs kids and the psychology of their behavior. She is always asking the right questions, and has even picked up on things I miss with Jenelle. The little girls in after school care just love Jenelle, and love to help her any way they can. When I pick her up at the end of the day, we leave sometimes with a chorus of "Goodbye Jenelle" from her new friends. We miss Valerie, but it was a perfect transition for Jenelle, and she seems to enjoy being with kids her age.
Jenelle is cheering for the Pop Warner Challenger Cheer team. The team is absolutely adorable, and Jenelle really seems to get exctied to put on her uniform and jump with her new friends. I promise, photos to come! We are still waiting to hear about approval for the VNS, and we should be getting a call for her new wheelchair/stroller any day. Our next trip to UCLA is in November.
I had a follow up at UCLA at the end of August and because I had been on my maintenance chemo medication for two full years, with a recent ATRA round, I was officially "DONE" with chemo. My labs that day indicated that my white count was a little low, but no reason to postpone. As for returning to full time work, that is going to take a bit more time. My doctor suggested giving myself at least until the end of the year to determine if I'm back to normal and would not think of releasing me yet. I'm thankful for the rest, and have needed it at times. Some of the side effects from Methotrexate and Mercaptapurine lingered for a bit, but seem to now have subsided. I do notice that it's is easier to wake up in the mornings without that drugged feeling, especially on Fridays which was always my day after Methotrexate. I'm still tired, but that could be just being a Mom.
With the start of school came a bout with the stomach flu and a sinus infection for both me and Brett. Of course, once I supposedly have a non-suppressed immune system, I get sick! The doctor put me on an antibiotic, and said my immune system will still take time to rebound. I had a bit of a scare the other day when I got the letter granting an authorization for my next oncology follow up. The letter said it approved a bone marrow biopsy. A little un-nerved at seeing those words again, I quickly called UCLA. The blood test for my cancer usually takes two weeks or more for results, and this was perfect timing for those results to indicate anything. Thankfully to my relief, UCLA will routinely request a bone marrow biopsy from now on for approval should they feel the need to do one if I present with cancer symptoms - not because of a recent test. They prefer having it approved if needed, rather than deciding I need one and making me wait for authorization. My next follow up with UCLA is in November, same day as Jenelle's visit to Dr. Shields.
In December I will be three years cancer free, and in two more years, I'll be cured. We begin new territory in this family where there is nothing much to worry about. Of course, it will always be in the back of my mind - the "what if" it returns; but that is to be expected.
There is a unique bond with cancer survivors; we all have been given the opportunity to respect and be grateful for each day we are given. I really felt connected to Steve Jobs passing this week, especially in his words at that Stanford commencement. Live each day as if it were your last, and don't live someone else's life. It really is just as simple as that, and I am so thankful to have to opportunity to live those words with true meaning.