Life

I've been a negligent blogger. This is a good thing, I swear.

We began this blog almost five years ago as a way to keep friends and family informed about Rosalie's medical care. It was so much easier to tell the story once. We learned early on that it is always best to hear information from "the horse's mouth." Otherwise, important details are left to the game of telephone.

But as Rosalie has been off treatment I have posted less and less frequently. I've made a conscious decision, however, to keep this as a blog about Rosalie and her journey through cancer. In this chapter of her life I know that the focus might be on the many side effects that come with the aggressive treatment she received. This is not the Reibel Family Blog. It would be really nice if I felt like I had time to do that. I don't want Teddy or Susannah to feel sad that they don't have a blog - I just want them to know that this is an extenuating circumstance that requires some clear communication.

Rosalie's blog is read by our personal family and friends, but also read by other families who have gone through a similar experience. We have become acquainted with cancer families as well as families who have children with special needs. It is for that audience that I feel compelled to keep the blog focused on how Rosalie's illness has affected (or not affected) her life. We who have experienced this treatment like to keep up with one another.

It's been so long since I have posted about how Rosalie is doing.

She is well.

She attends kindergarten in a regular classroom. She is an inclusion student and has access to an aide for all but 45 minutes a day. A large reason she needs an aide is her lack of mobility. She needs a walker or crutches to stand independently. Often times we hold her hand and walk slowly alongside her. She loves school and can't wait to get there in the morning.

She is quite social - definitely adores her friends at school and is always trying to have me arrange playdates. To throw out a term they use in the hospital a lot, she is "appropriate." I think that doctors and nurses use this as more of a clinical term about a child's behavior. But I'm using it here as socially appropriate. She laughs for the right reasons, cries for the right reasons, listens to other people attentively, etc . . . She loves having homework and when she doesn't have homework she could color/draw for hours on end. She has a good sense of humor and is able to laugh at herself (for instance, when she might catch herself before falling she will laugh about it). She can really concentrate on a task at hand and likes to finish whatever activity or game she is working on. She does show immaturity at times. For instance, this week at school she could not STOP laughing about something. Sometimes she will shriek when she drops a crayon on the floor instead of saying, "oops." When she wants something she WANTS it and she will repeat herself over and over again, "I'm not tired! I'm not tired! I'm not tired!" She lacks self-control with her baby brother and will do things like hug him really hard or crawl over him, stating, " I just love him so much!" She also has a hard time at activities that are a free-for-all, like picnics or parties. She will often ask, "What can I do?" It is hard for her to come up with ideas of her own. It is an area we are really working on. She does best with people she knows in environments she knows - and when those things line up she is lots of fun. Her affection for her friends and family is genuine, tender, and very touching.

She goes to speech therapy at school twice a week. Her overall voice has a slurred quality (dysarthria) - speech, after all, is a motor skill. Her vocabulary is good and her receptive skills are great. Her expressive abilities have gotten much better, but this is where she needs work. It takes her longer than her peers to "get it out." She is especially reticent in new situations. I should note that at home she has NO trouble whatsoever getting her thoughts across :)

Her fine motor skills are ataxic (lack coordination) and I have to say that a part of my heart is broken seeing how hard it is for her to execute her letters or her drawings. She wants so badly to complete work the way her peers do, but it requires 110% of her focus and effort to do so. Unfortunately, we have bigger fish to fry. She goes to occupational therapy several times a week and I appreciate all the hard work she puts forth.

Her left eye has been continually problematic. After her crainiotomy in 2006 her eyes were crossed. In 2008 she had strabismus surgery to correct the left eye. Her left eye definitely drifts when she is tired and if you look closely it is a little "off." She has to patch her right eye several hours a week to make sure she maintains good vision in her left eye.

She has high frequency hearing loss. This is typical of people who have taken the chemotherapy agent, Cisplatin. This is not the kind of hearing loss that a hearing aide can help. There are certain sounds that are hard for her to hear when there is lots of ambient noise. These sounds are /sh/, /s/, /f/, /th/. So we are aware of the fact that she needs us to speak directly to her when in a crowd. She also might start using an FM device in her classroom for activities where there might be lots of noise. This would be like a little radio on her desk and the teacher would put on a headset so that her voice would be amplified at Rosey's table.

She takes thryoid replacement, also typical of children with brain tumors who have received radiation to the brain and spine. For one, the pituitary gland might not be functioning the way it would have. Second, the thyroid glands themselves receive "scatter" radiation when the spine is treated. The medication is a very small pill that she takes daily. We do notice that she seems a little cranky without it.

She needs to be tested for growth hormone replacement. This is a day long procedure and I guess the agent they use for the stimulation is in short supply right now. The earliest the drug will be available it April - so we are on a waitlist right now for the procedure. If she is in fact growth hormone deficient she will need to give herself a shot daily. This deficiency is another side effect of radiation to the brain. The pituitary gland and the hormones governed by the pituitary get thrown off.

She is on a quarterly MRI schedule. Dr. Banerjee, Rosalie's oncologist, intimated that we might start moving to scans every four months. Her next scan is on February 22.

Rosalie works very hard in physical therapy. She is continually improving. For instance, she navigates the school remarkably well in her walker now. This is no small feat. Her class is constantly going one place or another (cafeteria, library, art, etc . . .) Her endurance and her ability to steer smoothly have greatly improved. She is working on using crutches which is something I really visualize working well for her. It takes concentration - but she can walk with her sticks across the living room rug. She can also take *a few* independent steps. She and Susannah like to try walking in between their twin beds. It is very cute. Rosalie takes about six steps and dives onto the bed. Another thing I have seen her do independently is stand up from the floor without pulling up on anything. Picture yourself sitting on the floor (to tie your shoes for example) and then just standing up. A really hard skill! I was so excited when I saw her do this.

I am reading over all that I wrote and I hope that I am not sounding too negative. I just wanted to go into greater detail about how Rosalie is doing post-treatment. Life is good. We know that on this Valentine's Day, as always, we are blessed.



Rosalie lost her first tooth in September while brushing her teeth.

Come on, Tooth Fairy!

Halloween 2010 - Susannah is a "Rose Fairy"

Rosalie as a "Nurse Fairy." I loved this costume. She and my father were brainstorming what she could be. She wanted to be a "fairy who helps people get better." My dad says, "Oh, like a nurse." So Rosalie says, "Yeah, a nurse fairy."

San Francisco Giants - World Champions! Here we are at the parade.

Tim Lincecum! Okay - a little off the topic of our blog. But this was very exciting!

Chicago in the fall

New York for Thanksgiving

In Manhattan with my friend Kate. This is a good one of Rosalie's walker.

Playdate with Rosalie's classmate Lamija and little sister Jaleah

Rosalie and her friend Eloise at their school sing-a-long

Tahoe over the holidays - Thank you Aunt Karen for the PJs

Family Reunion for Poppy Harris's 80th Birthday - Cruise to Key West, Cozumel

On the cruise - those cute dresses are from Meema Merri
.