Robin's Reports

November 3

Robin woke up this morning and one of the first things she said to Jon was, “Do you know what today is?” In my typical morning stupor, I had no idea what she was about to say. The time change has been rough around here and she has been waking up hungry at 5:30 a.m. Anyway, she proceeded to tell Jon, “It’s my Grandma Robin’s birthday!” I couldn’t believe she remembered a conversation we had yesterday about my mom’s birthday. And that this would be one of the first things on her mind in the morning.

In addition to being tired today, I was in a general funk over my mom’s birthday. I miss her so much. I couldn’t stop thinking about what it would be like to have her here in Cincinnati, deeply involved in Robin and Henry’s lives. I know it would be so wonderful. I can imagine her stopping by our house after work on her way home. I can imagine her taking the kids to the Zoo and to story time at the library. She would babysit often and would be an integral part of their lives. Oh, how I miss her. I miss the comfort that she would bring me in my darkest hours, the positive spin she could put on any situation.

In her honor today, I made my annual contribution to the National Ovarian Cancer Coalition and then Robin and I decided to do something fun. We were already planning a pre-Thanksgiving dinner, complete with turkey (Jon’s doing), mashed potatoes, cranberries, and asparagus. Well, Robin and I decided that we should have a birthday party. So while Jon carved the turkey, we ran over to Graeter’s in Mariemont and bought a birthday cake and some mint chocolate chip ice cream. I laughed when the lady asked me what the occasion was. I asked Robin and she said, “to have after dinner,” and then I told the lady it was a cake for my deceased mom! I asked if she had ever gotten that response and she said, “No!” :) Ha!

In typical Robin style, she got dressed up in a red gown and black patent leather shoes. We lit the candles, had a relaxing and delicious meal, and then had cake and ice cream for dessert. We even sang “Happy Birthday dear Grandma” and everyone smiled and rejoiced as I told stories about my mom. She loved birthdays, she loved celebrations, and I knew she was right there with us tonight.

Sara

Damn Cancer

That damn cancer was on its way to ruining our Halloween. With 30 minutes to go before trick-or-treat time began, Robin was falling apart. She took her last dose of steroids that morning and had a two-hour nap, yet in her Tinkerbell costume she crashed more than once crying, “I’m so tired,” and “I always don’t feel good on Halloween,” and “I want to go to sleep.” I was so pissed. Damn cancer. Don’t you dare ruin this day for our girl. All I could do was hold her as she cried, wishing I could take all the fatigue and aches away from her little body and put it in mine inside. I tried to stay upbeat and told her that it’s fun just to give out candy. Jon made her laugh by stuffing hay in his clothes, completing his scarecrow costume.

She cried when I surprised her with Tinkerbell stick on earrings because they hurt her ears but smiled with the purple and pink body glitter we both used. At 6:00, she decided to try trick-or-treating on our street. She was obviously tired, shy, and not really in the mood. I felt terrible for her. But after a block or so, we came back to our house and she gave Daddy a loud, “Trick or treat,” and from then on she was ready. She tackled another block, approaching each house with more and more vigor. She enjoyed seeing her friends Amira and Tori dressed as “Polka Dot Ballerina Girl” and Winnie-the-Pooh, and got a kick out of the bigger kids’ scary costumes. Henry, although he refused to wear a costume, got the hang of saying “trick or treat,” and putting a candy into his bag!

By 7:15, she was cold and tired again, so we came home to spend the rest of the night passing out candy. All in all, she said she had fun. And so did we. I look forward to having a NORMAL Halloween next year off of meds for good. She has already decided that she will be Dorothy next year.

Sara

Crazy

We have had a crazy busy week. Monday, of course, we were at the clinic all day. Everything went very well. Robin got vincristine through her port and methotrexate through her spine. I don’t think I will ever get used to that feeling of putting her to sleep. I held her on the table in the operating room and felt her body go limp. Laying her gently on the white table, kissing her, and walking away is very, very hard. It brings me to tears every time and I hate it. I sit nervously in the exam room and wait for someone to tell me she is okay. The waiting is torture. But on Monday, like every time before, she was okay.

She woke up as soon as I arrived in the recovery area. Our neighbor, Rosanna, is one of the nurses in the clinic and she was overseeing Robin’s care that day. It is so nice to have an even more familiar face there. It is comforting to me and to Robin. As soon as Robin woke up, she asked for a drink. She settled in with apple juice, and the packed lunch we had brought from home.

All of Robin’s medications were increased because she has grown so much! Between August 30 and Monday, she grew 3 cm! She is 34.8 lbs and 39.8 inches. It seems like it took her forever to crack 30 lbs, but she keeps growing. This is a very good thing!

She started her steroid pulse on Monday night. As expected, she is very tired and is napping every day. She is also very hungry so we work hard to meet her needs, attempting to make sure she eats nutritionally, but even that is a challenge sometimes.

On Wednesday, the 4 of us stood in line for 3.5 hours to get the H1N1 vaccine. Can you believe it? Children’s Hospital, which is one of the hospitals that TESTED the vaccine earlier this year, still doesn’t have it. The City health clinics had a small amount of it so we decided to try our luck. I am really glad we got it, especially as we anticipate 2 upcoming trips (FL and DC in November).

I am so behind on everything I want to say and all of the pictures I want to post. There is just so little time in the day to get it all done. So I will end this even before I am ready to, but work responsibilities call. Maybe one day I will finally feel caught up, but probably not.

Sara

Sunday

I haven’t had much time to write lately but I wish I did. I have so much to say, so much I want to get down in words. In brief, things are going pretty well. We’ve had our ups and downs as usual, but all in all, we continue to be grateful that Robin is doing so well.

We had a nice weekend. Saturday was cold and breezy. Robin’s soccer game was moved indoors. There were only 3 players so they all had to play the entire game, and they did! It was a lot of fun. I couldn’t believe that Robin essentially ran for an hour straight. I was sure she would fall apart later, but she didn’t. Today was jam-packed with a family run around the neighborhood, a visit to a pumpkin patch, a hay ride, a trip to the park, and dinner in a casual restaurant. And home care! Robin got her port accessed and promptly fell asleep on the living room sofa. It was a beautiful fall day in Cincinnati. The leaves are at their peak and the color is magnificent.

We go to the clinic tomorrow morning for Robin’s monthly appointment. It will be a long day. She gets put to sleep, the methotrexate in her spine, plus vincristine through her port. And then steroid week begins. I am hoping that the hospital has the H1N1 vaccination. We know SO MANY people who have been sick. It seems to rip through families, and of course, we want to avoid ANY sickness. A fever is an automatic entry into the hospital for Robin. It has actually been quite nerve wracking knowing how many people have already been affected by the flu this year.

In other news, Robin is looking forward to dressing up like Tinkerbell this year for Halloween. Henry, on the other hand, cannot be convinced to get into a costume yet. We still have time, right?

Sara

Saturday was a good day for Robin, the soccer game was a success and she had a lot of fun. On Sunday, we went to a festival and Robin played at the park, in a bouncy house, and got her face painted. Unfortunately, she fell off a swing and landed flat on her back. It was horrible and she cried a lot. And later that day, she took her first spill on her bike. It was a bad fall; she landed on her right cheek, got scraped up, cut her lip, and even broke her helmet. Jon was with her and described it as an awful site. It took a long time for her to settle down, but thankfully, a few hours later, she was feeling a lot better. Poor girl. It was a rough day. I was skeptical about whether or not she would go to school today, but she woke up feeling good, so off she went!

After school, lunch, and quiet time, Robin, Henry and I went to the park and played for awhile. Then we came home to make a fancy dinner. Today Jon and I are celebrating our 7th anniversary! Robin and Henry both helped to prepare poached salmon, roasted potatoes, butternut squash puree, steamed broccoli, and individual chocolate molten cakes for dessert. Robin always likes fancy dinners, so we lit the candles and got dressed up. I surprised Robin by putting on my wedding dress! She always asks me to put it on, but I never do because it is an ordeal and I never thought in a million years that it would fit. But it does! Seven years, two babies, and 40 months of nursing and it still fits! After dinner we had a dance party and everyone got in the spirit. It was a wonderful at-home celebration! Pictures to follow….Happy Anniversary Jon!

And if anyone wants to see a sneak preview of our family pictures, check out the photographer’s website: www.greenleafphotostudio.com and go to “family lifestyle” under the portfolio section. We’re the first photo.

Sara

Great Week!

We have had a GREAT week. Robin has been so stable and so enjoyable. She is feeling good and all is well! I am so relieved because last weekend was so miserable. It has been nice to have a few very good days.

She had a soccer game this morning and she played the entire game. Usually the kids want to take breaks and rest, but she stayed in the whole 30 minutes. She smiled, laughed, and had fun. She didn’t pout once and even laughed when she fell down. Yippee!

It is COLD here in Cincinnati, but a beautiful fall day nonetheless. A sitter is coming to tonight and Jon and I are going out to dinner to celebrate our 7th anniversary (10/19/02). Yippee to that too!

Sara