Robin's Reports

Better

I am happy to say that yesterday and today have been much better for all of us. Robin went to school both days and has napped well and slept well. In fact, she has been sleeping in her castle tent at night. It is so cute. She usually just plays in there but the last couple of nights she has wanted to sleep in there. And she has slept like a log. It must be warm and cozy with her sleeping bag and all of her dolls.

I am relieved that she is sleeping well because she has a slight cough and a cold. Jon and I are watching her very carefully because it seems A LOT of friends of friends have been diagnosed with H1N1. Scary stuff. Robin’s school is closed for the rest of the week (not illness related), but I am actually kind of glad to keep her home for a few days. I want her to continue to get rested and well again. I am wondering if her cold may have been why she was acting out so much this weekend. I guess we’ll never know.

In my “state” on Sunday, I neglected to write about the highs we experienced over the weekend. The soccer game, a pumpkin festival, and time visiting with an old childhood friend and her family were all delicious and nurturing activities in many ways.

I worked all day yesterday and today Henry I enjoyed the morning at the Zoo. It is chilly here today and fall is in the air. The Zoo was quiet, but always stunningly beautiful. The horticultural staff, including my friend Deb, were planting tulip bulbs! Hundreds of them, thousands probably. I will remember them come April when those giant, strong stems emerge from the earth.

We’re heading out shortly to meet a photographer in the park to take our family picture. It just occurred to me that I might cry. Last year we had our picture taken on November 1 and Robin’s hair was in the process of falling out. It was thin and you could see her scalp in places. I remember walking into the photographer’s studio and another family looked curiously at her. Now her hair is uncontrollably curly (to her dismay), and it might not cooperate at all for this photo. But who cares?? We have hair, we have Robin, we have family, and we are together!

Sara

Tired of it

I am tired of this. I am sick of it. I just can’t stand it sometimes. We had a weekend of incredible highs and lows. After I got dinner on the table tonight, I just left. I had to get out and be by myself for awhile. I got in my car and didn’t know where I was going. I told Jon I would be back in an hour and a half.

I drove about 2.5 miles from our house to a neighborhood where I grew up. I parked my car and just started to walk. I walked down streets and sidewalks that at one time were so familiar to me. Streets where I learned to ride a bike and to roller skate. Streets where I walked our dogs, passed homes of childhood friends, knowing the layout of each with great familiarity. And of course I walked past my childhood home. Three times.

My car led me to a place of comfort and safety, to a place where things, at least in my memory, were so simple, peaceful, and easy. Maybe that’s why I was there, seeking simplicity, peace, and ease. Gosh, it has been awhile since I have felt those things.

The hill around the corner from my house wasn’t as big as I remembered. I remember feeling scared to roller skate down that hill, but triumphant and proud once I did. Before I learned how to stop myself, I remember just skating into someone’s grass, but then one day, I knew how to do it. I always thought there were 15 stairs from the street up to my house. It seemed like a long way to carry groceries. But you know, there are really only 7 or 8 stairs. It was weird to feel my grown-up body walking in space that only my kid-body knew.

During my walk, I called my sensitive and thoughtful brother and had a nice chat. We talked about the neighborhood and I vented about everything going on here. I am so lucky to have a brother like Alex.

After walking for an hour or so, I stopped and bought some purple asters, bright purple with deep green leaves. Purple is Robin’s favorite color and one of my favorites too. Maybe this week if things get bad again, I can just focus on the flowers, think about my nice walk, and know that this is going to get better. I can find the peace in a bouquet of flowers. I can find peace knowing that we will get through the hard days, that we can overcome each challenge, just like we have all along.

Bottom line is, I hate cancer. I hate it so much. I hate the fact that we have been giving toxic drugs to our child for 16 months straight. Every day. Every day. I want it to be over. I want her to be done with this crap. I want her to feel and be normal. I want her to know what it feels like to be HER, not “Robin on drugs.” I want her back. Sometimes we just think, “what if we just stopped giving her the meds?” I can’t tell you how much I would love to do that. But science says not to, so we carry on. 10 more months. Then we’re done. For good. Goodbye cancer. Goodbye chemo. Hello Robin!

Sara

Steroid Week

Only 2 more doses of steroids to go this week! Robin has tolerated the steroids really well this month. She is very tired, but we have not seen some of the rage we typically see. I keep hearing the words of Dr. Perentesis, one of Robin’s oncologists, from many months ago. We were discussing the behavioral challenges of having a child on steroids. And he said something to the effect of, “Sometimes it is the intersection of where the child is developmentally and where they are in their treatment that causes the behavioral issues.” I have never forgotten that and I think he was right. As she has matured over the last few months (so clearly on her way to 5), I think she is better able to control herself when the medicine makes her want to act out-of-control. I watch her when she gets frustrated and she rarely lashes out like she used to just a few months ago. I am glad now that we did not pursue therapy and that we were able to wait it out and learn some coping strategies.

I have been watching Robin lately with different eyes. She is becoming so independent, so mature, and so grow up. She is so graceful in her movements, so thoughtful and articulate with her words. Today she wanted to clean the windows and she said, “I want to clean the windows now because when fall and winter are here, people just want to sleep all the time.” I thought that was so funny. Anyway, I am in awe of her spirit, her heart, and her gracefulness. Wish you could all see her in action. She is my little hero.

Sara

Various Things-Light the Night, Weekend, Clinic

Robin and I are sitting in the clinic right now. She is about to receive a dose of vincristine through her port and a flu shot in her arm. Her counts are great and everyone is so pleased with how well she is doing. Jon and I continue to be so grateful for the wonderful care that Robin receives at Cincinnati Children’s Hospital. Everyone, and I mean everyone, really, really, really cares so much for her and is committed to making her experience and our experience as good as it can possibly be.

So, last Thursday was the Light the Night Walk for the Leukemia & Lymphoma Society. We had about 15 friends committed to walking with us and our team raised over $500 for the L&LS!  However, last week the weather was miserable and on Thursday night, it was pouring rain.  Our family, plus aunt and uncle Lori and Steve, and teacher Nancy, met down at the river for the walk. It was impossible to keep Robin and Henry dry.  We tried, we really did, but after standing around in the rain and then walking about 500 feet, we decided that was enough.  The kids were cold and miserable and it just wasn’t worth it.  So we packed up and headed home.  The good news is that we are going to do a “do-over” later in October.  Our good friend Eric is going to host a potluck and walk at his office, which is conveniently located in beautiful Alms Park.  More on that another time.

We had lots of fun this weekend. On Saturday, Jon took the kids up to Lebanon to see their Great Grandmother, Ma, while I worked from home in the morning and attended a seminar in the afternoon.  That evening, I took the kids to a fundraiser for Children’s Hospital.  It was a family-friendly event in Eden Park featuring the Comet Bluegrass All-Stars, the same group that performed at our wedding 7 years ago.  There were craft projects for the kids, but Robin & Henry spent most of the time dancing. It was a beautiful night, the music was lively, and the crowd happy.  It made me feel happy to be in Cincinnati and happy to be among people who care so deeply about Children’s Hospital.

On Sunday we woke up and headed over to the Proud Rooster restaurant in Clifton for a casual breakfast.  Since it was early and cool, we stopped in the Zoo for a short visit.  We saw the elephants, gorillas, an emu, a camel, some owls, and Henry’s favorite, a Sumatran rhino.  We headed home and made it in time for the home care nurse’s visit.  Robin’s port was accessed and once again, she barely flinched.  Afterwards, Robin and I went to see Disney Stars on Ice with her friend Dianna and her mom.  Robin was enthralled with the ice skating and excited to see Mickey Mouse, Pinocchio, and the various Disney princesses, among other characters.  It was an all-encompassing sensory experience, and by the end, we were all worn out!

Robin went to school this morning for 2 hours before the clinic visit.  It was fun to pick her up and find her in the middle of some work.  I got to watch her finish her work, clean up and say goodbye to her friends and teachers.  She is so happy at MOH.  Henry got to stay home with Aunt Lori and Great Grandmother, Ma.

I was astounded to see a security guard standing near the elevator going to the clinic and patient rooms. The hospital is taking flu season very seriously and only patients and parents are permitted in the clinics and in patient rooms.

Tonight Robin will take methotrexate (5 pills), 6MP (one pill), dexamethasone (steroids-2 pills), and bactrim (5ml).  Once again, it is steroid week and I am just bracing myself for the unknown.

Robin seems so mature and so grown up lately.  Today at the clinic she reminded me that we forgot to celebrate her 4 ½ birthday a few weeks ago, so we stopped at The Bonbonerie and she picked out a beautiful cupcake with a purple flower on top.  Tonight we sang and celebrated our beautiful and beguiling Robin.

Sara