Madelyn had her monthly appointment at Seattle Children’s on Monday. We were all feeling a little “drippy” and congested so instead of going to my sisters we stayed in a hotel. We arrived in the city about 1:30pm and went straight to Stone Gardens in Ballard. The girls climbed with Peter for about two hours. Each time Madelyn climbed she went just a little bit farther. By the end of the two hours she was almost to the very top and VERY proud of herself. Peter was also happy – his girls were climbing and lovin’ it.
As you all know, we like to make our trips to Seattle fun. Why? Well because it’s fun. Plus we like the girls to have positive experiences in Seattle and not just associate the trip with going to the hospital. Besides we all like something fun to look forward to in the midst of waiting, waiting, waiting and chemo. We had such a marvelous weekend together. You know… I really love hanging out with my family.
After the climbing gym, we checked into the hotel downtown. It was in walking distance to the Bainbridge ferry and Ivars. We ate at Ivars watching the ferry coming and going. Then we headed down to Pier 57 and the carousel – taking two spins. Long spins for mama… thought I was gonna throw up.
The next morning our appointments started at 8:00am. Luckily the national shortage of IT Methotrexate did not effect MJ - she was able to have her spinal tap, as scheduled. She went into the procedure room like a champ, but had a hard time waking up. She was pretty sad, dizzy and tired, but about an hour later she was doing great again.
All her chemotherapy is increasing these days. Oral, infusions, spinal tap chemo… It is a combination of her growing and the oncologists pushing the numbers. They want to make sure she gets all the chemo she can tolerate. The effects, long term, are reducing the chances of relapse and saying good bye to cancer for good. The short term effects are increased discomfort for Madelyn. Her post Children’s week is her “hard” week. Sophia knows what this means. It is harder for Sophia to cope with lately though… simply because she is three. Any Mom’s of three year olds know what this means.
Today, Wednesday, we are seeing those side effects already. She woke up with head aches, body pain and jaw pain. She is really not feeling good, but we are giving her pain medicine and encouraging her to still go to school. At home she just sits around and focus’ on how she is feeling. With us, she is in that “comfortable” place so the wining and sadness (from the dexamethasone) know no bounds. At school she is much more distracted and able to re-focus. Sometimes it’s just not possible to get to school… but we really try. The medicine also gives her indigestion and constipation. This month I started her Priolsec three days early and gave the first dose of Miralax before any symptoms have begun. I am hoping this helps a little.
After her appointments were finished we ate and then headed to the pool. Madelyn and Sophia’s swimming teacher was sick but the pool let us “splash” around for an hour. Madelyn is a fish these days - so confident and carefree in the water. It is such a joy to watch her self assurance and the resulting pride.
Next Daddy had a doctor’s appointment so the girls and I went to the Zoo and visited the Seattle Troll. The girls love the Troll and so do I… Last stop was Bizzaro for dinner - one of my favorite restaurants in Seattle. Madelyn and Sophia just had a blast here. It is a real feast for the visual senses. Upside down rik shaws, bikes and tables hanging from the ceiling, tons of chandeliers, funky paintings… We played “I Spy” almost the whole dinner – so many fun things to pick. I love the way Sophia plays:
Sophia: “I Spy a silver fork.”
Me: “Is it that silver fork right there?”
Sophia: “You got it Mommy! Good job!”
SO. Madelyn’s Make-A-Wish trip is officially in place! In a couple weeks we will be going to Tucson Arizona to a dude ranch. Madelyn will be riding horses, taking care of horses and hanging out with cowboys and cowgirls. I am so happy for the girls – getting to have this very special experience. I will of course take lots of pictures and update you as soon as we get back.
Here are pictures from our super fun fantastic family weekend in Seattle… that just happened to also include Seattle Children’s Hospital J
Analyzing the route.
Team Climb Baby.
Climbing wasn't the only thing happening at the gym. Little Tickle Monster too...
That's MJ in the pink.
A very happy Daddy.
Waiting at Children's. I forgot our activity bag! No coloring, no books, no games. Can't believe I did that! Oncology has crayons and pictures luckily...
Waiting for the "Sleepy Room."
Struggling to wake up. Dizzy, nose stuffed up, hungry, no happy.
Zoo... what to do first?
Oh ya, ice cream was promised. That's first...
I got this look a lot this weekend.
Sophia was NOT happy having her photo taken this weekend, at anytime. Go away Mommy! STOP TAKING MY PICTURE! I remember Madelyn being like this at three years old too...
Sophia kept stealing her sisters ice cream...
