It's been difficult for me to find the desire to write these past few months. To be honest, there has not been a whole lot going on for Brynlee, but this post is very much overdue. Even though we are still fighting a big fight with this cancer business, it has felt to me that when she goes off of treatment for cancer that the interest in Brynlee's battle from others and also my desire to talk about anything cancer related just diminishes. Sometimes it is easy to forget...well, I never really forget...that she still has cancer inside that body of hers when we are not actively fighting it. Sometimes I guess we just don't think about it as much even though we still think about it a lot. But it is still there, and we are still in this fight.
With that said, Brynlee has some different studies, scans, and appointments coming up over the course of the next few weeks, and we are really hoping for great, not just good, but great news. Honestly, it will be disappointing if the scans still show stable tumors. Anything other than smaller tumors will be disappointing for us. No, stable is not bad, but we really would like to get these tumors over the stable point of plateau and headed down the other side. That is our hope.
As for what Brynlee has been up to...
Well, she was able to start preschool in February after she turned 3 through the school district. Because of Brynlee's physical disability she qualified for special education preschool. She was in a mixed class, which means that some of the students have no special education needs and some have an IEP (individualized education plan?) like Brynlee. She went to school twice a week for 2-1/2 hours and loved every minute of it except for the day that they had the earthquake drill and the shaking noise went over the loud speaker and she had to take cover under the table. That was traumatic for her! So now we know that when the "big one" hits that she will most likely need therapy.
Brynlee loved her teachers! She had her regular classroom teacher, Ms. Stephanie, her special ed teacher, Ms. Shirley, her teacher assistant, Ms. Cassie, and her physical therapy aide, Ms. Kelli. Her teachers told me that Brynlee just brought such a special joy into the classroom and that they loved getting to have her come for a few months.
This was her first art project.
Even though Brynlee is off treatment, it has been so difficult to keep Brynlee healthy these last few months. Because of her paralysis, she is more susceptible to gunky colds getting caught in her throat and chest. So even if she gets what would be a mild stuffy/runny nose in anyone else, she gets stuck with it for about 2 weeks. And just when we finally get it cleared out of her it seems that we get a new one a week later. I heard that this has been the longest RSV season they have ever seen, and I am thinking that is why she is getting hit so hard this year.
She also ended up with a double ear infection and pink eye back in March. We have never had pink eye in our house before, so that was a new one for us. Oh, how she hated those eye drops! But thankfully it didn't spread to anyone else.
And on nice days, you can find us outside with the sidewalk chalk.
A few weeks ago, Brynlee had her regular appointment with her physical medicine and rehabilitation doctor. This appointment is always a mixed bag for me. I usually end up leaving this appointment feeling completely deflated and hopeless. Let's face it, spinal cord injuries suck! For me, they suck more than cancer (and cancer really sucks!)! I would imagine that the majority of people unaffected by SCI don't know about all of the complications that come with it. There are bowel and bladder and digestion issues, pressure sore issues, pain issues, spasticity issues, tightness issues, degeneration issues, scoliosis and kyphosis issues, upper body management and strengthening, higher risk of pneumonia, and on and on. Not to mention that it is a lifetime battle. They are not fun topics to discuss or think about, and we didn't have the "luxury" of being hospitalized for the SCI and getting educated about everything SCI when this first happened. You could say that we are probably the most uneducated SCI caretakers there are, especially at nearly 3 years post SCI. It is frustrating, to say the least. I have been able to attend some classes the last few weeks, which have been informative, but most of the information and resources just do not apply to a 3-year-old. Most people with a SCI are adults, and, therefore, most treatments and therapies are geared towards adult-sized patients. We did find, however, a clinical trial for stem cell treatment for children with spinal cord injuries using their own stem cells, which we are so hopeful for the future of stem cell therapy and this was the first one I had found for children, but unfortunately Brynlee does not qualify because of her cancer. This was disappointing because I think there is a really bright future for stem cell treatment and we think that it is something that Brynlee would really benefit from in one way or another (improved bladder function, improved leg function, etc.), but at least they have started clinical trials here in the US, and hopefully some day she will be able to participate.
And here she is on the last day of preschool. I think this is the longest her hair has ever been (and the curliest). Her hair definitely came in lighter and curlier this time.
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