Andy & Jessica

“My house broken” (while pointing to crack in kitchen tile floor).  “Need tape.”  (He then went to work taping the kitchen floor up.)

“It’s impossible to fall asleep while you are awake.”

Andy got me a fitbit for Christmas. I had never heard of it, but love it. It’s a small device you wear on your clothing to keep track of steps taken, floors climbed, calories burned, etc. It also tracks your sleep pattern.  Last night was the first night I used it to track my sleep.  I fell asleep in 2 minutes and was awakened 10 times.  Welcome to my world.  I’m getting Andy one for our anniversary.  I will be very interested in his statistics.  Do I, at my desk job, walk more steps than him in a day?  Does he wake zero times a night?  It will be fun to have a little spy implanted on him so I can see his activity level.  The fitbit claims I should only eat 1,500 calories today.  But, I don’t think it knows I’m still breastfeeding and I carry at least 20 pounds of boys whereever I go.  I think I am entitled to some bonus treats for all that.

 

After Jude’s MRI and appointment with his oncologist, the 5 of us flew to Arizona for Christmas. My mom and dad, brother and his fiancée, sister and brother-in-law and 2 nephews met us there. We kept busy. On the first day we went hiking in the desert. Even though the hike was a wide, flat trail, all 5 boys got injured. My 3 boys got bloody, skinned-up knees and one of my nephews got a skinned up knee and the other got poked in the hand by a cactus. The boys had a lot of fun exploring the desert and looking for scorpions under all the big rocks and looking for dinosaur fossils. We also took a trip to Biosphere 2, a self-sustaining domed environment where some people lived for a couple years and that is now used for super-controlled science experiments. The boys were pretty chatty so I missed most of the tour, but it was something to see. My favorite day trip was the one where we saw Montezuma Castle (a Hopi Indian dwelling in a mountain) and Out of Africa (a private zoo that doesn’t like to be called a zoo). We saw a Tiger splash show. After the show, they announced that for $5 anyone could feed a tiger. Jude was sitting next to me in the front row and he yelled out, “Oh yeah, that’s nothing! I’ve had 2 brain tumors!” As you can imagine, most of the people scattered after the show (including everyone in our group), but Jude and I stayed behind and he was first in line to feed the Tiger. While waiting there, Jude recited all the dangerous things he had done in his life: Sat on an alligator before he was 4 (the day before he turned 4), held a snake, rode a camel… . Jude did great feeding the Tiger and I hope the pictures I took turned out. (He fed the tiger through a fence and with tongs, but that makes the story less exciting so I suppose we’ll leave those little details out in the future.) We also went on a safari tour on a modified school bus. Zebras (including a 6 day old one) and giraffes swarmed the bus and we fed them well. Asher was totally enthralled in my mom’s arms and fed the giraffe and made cute animal noises to the animals. Jude and his cousin were sitting with me and were doing a good job elbowing others to get a good look at the animals. We spent some time in my parents’ heated pool and at some nearby parks. And, of course, there was Christmas. We were all spoiled as usual with gifts, but Jude was quite embarrassing and ungrateful by sobbing after opening a few presents because he thought that was all he was going to get and he was tired of seeing everyone else get presents. He ended up getting a stupid Spider Man web shooter that I found for my mom to get him and that he wanted so badly. That shut him right up and it was all fun from then on.

Jude’s MRI from last Friday turned out good. There is some brightness (which means either tumor or inflammation), but less than before so they think it is just inflammation that will go away. Jude did great. He pretty much took his own temperature and blood pressure and was so cooperative that they suggested he be a star of a movie to teach the other kids how to get prepped for an MRI. Then he gassed himself to sleep and they started his IV after he was sleeping, which worked great. But, after waking up from the MRI, he screamed bloody murder when he saw the IV poked into his arm and he went to work taking it out. He was not happy about the sticky bandaging that made it painful to remove. After getting out of there, we swung by our house to pick up the rest of our crew (Andy and the little boys who were sleeping in) and then headed to meet Jude’s oncologist. She said that Jude’s vision issues are not related to the tumors but must be related to the radiation. Maybe the optical nerve was radiated. She’s checking with the radiation oncologist in Indiana about that. So, overall good news and I’ll breathe a little easier until the next one in 4 months.

Jude has been complaining for awhile about double and even quadruple vision.  The eye doctor was unable to find anything wrong with Jude.  But, today at Jude’s required pre-MRI physical exam, we learned that the vision issues Jude has been complaining about are common for brain cancer patients.  They gave Jude an eye patch.  Whenever his eyes are not working properly, he is supposed to wear his patch.  That is supposed to train his now weaker eye to strengthen and align.  Can’t say that was on my list of possible side effects.

On Friday, Jude has his next MRI. It will be his 2nd MRI post-surgery/radiation. I always get worried leading up to MRIs. I’ve been so preoccupied with other things/worries, that I haven’t really had the chance to worry about this yet. I’ve got to make time for that. Just kidding (sort of). This MRI will be done at Children’s in Minnetonka , instead of at Children’s Hospital since they have an anesthesia team that is trained to gas a child to sleep before starting the IV (unlike at the hospital where they have only ICU doctors on call to administer the anesthesia and they can only do IV meds (requiring a poke)). So, my little guy won’t have to get stabbed while awake, which is a big win for us. After the MRI, we will head to Children’s in Minneapolis for an appointment with Jude’s oncologist. Hoping and praying for a clear scan.

Often I don’t get to see the boys before I go to work in the morning. We all go to bed at 11 p.m. or later and they are often still sleeping when I leave to catch my bus in the morning. Last night was really bad. We didn’t get any of the boys to sleep until after midnight. But, Jude surprised me by waking up before I left. He was so happy to get some hugs and have me turn on some French TV for him (yes, he’s mastered German enough that now he’s learning French). Then when Andy woke up after I left, he took a line from Jude and asked in a concerned voice, “Where’d Mommy go?” Jude said, “I got to see her.” Then Andy, still pretending to be Jude said again with a whiney voice, “Where’d Mommy go?” Jude had a gleeful look on his face (since he saw me and Andy didn’t) and yelled out, “Work!”

We went ahead with radiation, knowing it wasn’t risk free, but not knowing exactly what the risks were. Jude is doing great, but has complained of some vision issues that we haven’t quite gotten to the bottom of and we’ve also noticed (and tests have confirmed) that his short term memory is impaired. The Ph.D. who did the memory testing on Jude both pre and post radiation suggested music therapy as a means of getting Jude’s memory back on track. I’ve done some checking and we’ll be enrolling Jude in a music therapy program at MacPhail. I’m pretty excited about it. It’s hard to know whether I was given a sales pitch or whether science would back up the assertions, but I liked what I heard and want to do everything I possibly can do to get the best outcome for Jude. That’s why I enrolled him in karate classes and that’s partially why we teach him ourselves at home instead of letting him regress to the mean. The folks at MacPhail told me that music stimulates both sides of the brain and that it can create connections in the brain that didn’t exist before, etc. It certainly won’t hurt and we were considering piano lessons for him anyway. We’ll see how it goes.

Last night, my brother-in-law and sister-in-law watched the boys and Andy and I went to Triple Espresso, which was a really fun comedy show. It was downtown so we parked in my work building and walked there. I brought a flashlight and pile of work to do in the car on the way to and from downtown since I’m really busy at work and trying to squeeze a little extra work in. When we arrived back to my work building after the show at 10 p.m., I noticed there were some cars still in the parking area. I said to Andy, “Someone is working late tonight. I’m glad it’s not me.” However, while I was saying that, I was simultaneously (and without even realizing what I was doing) reaching down for my pile of work and flashlight. Oh the irony!