Espen's BrainBlog

I got an email the other day with the subject line “Hello lost family.” Strangely enough, the email pointed out that I hadn’t updated the blog in quite some time and this poor family member was wondering how the heck we are. The answer is – just fine. We have been up at German camp since June 13 and going fairly full on ever since.

The first week was a family week where we had 12 families with kids here in addition to the 40 plain old kids that were here for a week. So, everyone was in full programming all day and I was in full work mode all day. The following week, we got new kids that are either here for 2 or 4 weeks. Espen is fully involved with them. Siri is about 1/2 to 3/4 involved and Berit and Torben involve themselves when it suits them. Watching “Madagascar 2″ as an activity for example was a hit. So, however, was making friendship bracelets and earlier we drew some leaves in an art activity.

I was working fairly non-stop to get a project finished yesterday. I started it when we were still in Boston and although it was a really great project, I’m not sorry to see it go. Things will be lighter for the next 2 weeks so I will be able to “mitmach” (join in) a bit more. The youngest children are enjoying attaching themselves to counselors throughout the day. They are definitely getting a chunk of attention which had been lacking over the year with Espen being the focal point. He is definitely getting less attention, but I think that is also a necessary transition.

When we got the news that his MRI showed shrinking cysts and found out we didn’t have to come back until September I told him that meant we could be gone for the summer and not even think about the brain tumor. I think I mentioned that he wouldn’t even have to tell anyone about it, unless of course he wanted to. I’m pleased to report that he’s taken that to heart. The other day he was walking around on his stilts after dinner – admittedly to get himself a little bit of the attention – but while he was chatting with some girls who were commenting on his height, one of them mentioned how girls grow faster than boys. Espen had the perfect opportunity to say “Well, that’s true, but I’m not growing because I have a brain tumor” and he didn’t. It was really nice to see him deciding just to be Espen, not Espen the kid with the brain tumor.

He is on an overnight trip tonight with the other kids in his “Family” (language group). They are a specialized group so to speak that is doing a theater production. The last few nights they’ve led a few groups of kids into the woods (10:00 pm – nice and dark) to this lovely little stage along the lake where they give a theater performance. Kirk’s mom and dad were here last night for it. Kirk’s dad had asked Espen earlier in the day whether he feels like he’s ever impeded by his vision or whether he can do everything he wants to do. After watching him perform, I thought “Yep, he can do everything he wants to do.” He unicycles as part of the performance on a rather tiny stage. He also enters and exits several times in the dark. So, I was impressed.

He is still short and round but we’ve been getting some good information from people on the craniopharyngioma list about actual changes we will hopefully see when he starts growth hormone in the fall. Those being namely increased energy along with height gain and therefore some thinning out. It would be nice if we could get his body back to the point of being able to be more active. He is currently about as active as his body lets him be, but he’s not going to be found out on the soccer field for example. He’s been napping everyday from about 1 to 3. We should all be napping everyday for that long though with the schedule we’re on. We end up eating dinner just a little before 7, which makes for a late night and then breakfast is at 8. I’m thinking everyone will sleep pretty solid for a week when we get home.

So far, all the reasons for coming up here for 5 weeks are panning out – the kids are speaking a lot more German and we’re getting fed really good food that we don’t have to cook. The only downside is that we are probably eating too much of it though. My great plan for us to get out and ride our bikes seems somewhat thwarted, but on the other hand, we’re all probably more active here than we would be throughout the day at home. Lots of walking. Maybe we should walk around the block 3 times at home before we sit down for each meal.

One camp thing Siri would like to take home with us is the Essensvorstellung. Say that 5 times fast. It means meal presentation for you non-german speakers. Before each meal, a group does a skit or sings a song or some other goofy thing to introduce the meal. Siri LOVES it. She got to be in one last week and reminded us every day for the 3 days prior that she was doing it on Saturday. So, she decided we should also do it at home. She’d like to do it in English she contends. I’m thinking if the kids want to spend a half hour hammering out a meal presentation before dinner, woohoo. Maybe they’ll leave whoever is cooking alone. So, if you should happen to be dining at our house in the future, please do not be startled by the meal presentation and just simply repeat the names of what we’re eating as excitedly as possible.

And for anyone who is interested – there is a Waldsee camp blog at this address:http://waldsee.villagepages.org/
You can link from there to the flicker pages which have lots of cute pictures of our kids and a bunch of other cute kids at camp.

We got confirmation from the opthalmologist this morning that I’m not crazy and his eyes are indeed better. When he saw him in May, they could correct his vision to 20/60 in his left eye and 20/200 in his right eye. This morning – 20/25 in his left eye and 20/100 in his right! Yay!

The only downside is that the new glasses he just got Saturday have the wrong prescription. So, he’ll have to go back to his old glasses for another week or two while we get the lenses replaced. I think he’ll live.

THE CYSTS ARE NOT ONLY NOT GROWING – THEY’RE ACTUALLY SHRINKING!!!!!!!

I thought about giving you all a long winded round about blog post that at the end got to the fact that the cysts are shrinking, but I couldn’t do it to you. You’ve been such great supporters that I had to let you share in the joy as soon as possible. So, you may now do your happy dances, because the cysts are in fact smaller than they were a month ago. Espen’s neurosurgeon was fairly impressed with the amount they have shrunk to boot. We have a green light to enjoy summer – he doesn’t have to do anything until mid-September!! We’ll continue to monitor his vision with the online eye charts about once a week, but hopefully, it will get better, not worse.

Espen called Kirk at camp and talked with him. He tried both grandmas – but no one was home. He did also get to talk to his Tante Jodi. I went into his classroom with him when he told his teacher so I could see the reaction. It is really, really, really nice to watch him deliver such great news.

We’re off to camp on Sunday and return in mid-July (late July for Espen). There are some things afoot with Make-a-Wish however, we’ll keep you posted. I thought Espen should do a post about some of his Make-a-Wish ideas and request that you all post your ideas. At least for now, the wish for the tumor to go away is being granted!!!

Sorry about that. I’ll blame the typical end of school craziness. Oh, and there is the little detail that the month of May was the first in several where we were all together in our own home. Oh… AND the little detail that we decided to go all out on getting our back yard finally whipped into shape after finally “finishing” the deck. So you all can add praying for the grass seed to grow to your list.

We have very little news, but the news we do have is pretty big – Espen was at the endocrinologist on Wednesday which was in and of itself fairly uneventful – discussion of some meds, but all in all it was pronounced that he’s doing well. But he is doing particularly well, in our opinion, in one important area – he GREW – a whole inch and a quarter!! At first he wasn’t so terribly excited because the doctor actually downplayed it a bit. I think she was a bit more excited when she realized he really hadn’t grown much at all in the last two years. I marked him on Kirk’s mom and dad’s laundry room wall tonight and he literally grew as much between January and now as he did between 2008 and 2010.

Espen also still really wants to “let” Siri get taller than him just for fun. She always used to say to him “Espen, when I’m older than you…” and he’d say “Siri, you’ll never be older than me.” So she’d say “Espen, when I’m bigger than you..” and he’d again say “Siri, you’ll never be bigger than me.” But he thinks it would pretty much be the coolest thing he could give her if she got taller than him for a tiny bit of time. So he also downplayed his growth until on a walk Thursday morning I asked “So, are you secretly pretty happy that you grew?” And his response was a very sly smirk and an adamant “Yes.”

On the actual medical front – he’s got an MRI on Monday. We are expecting that there will be no change. If the cysts decided to shrink – we’d be ecstatic. I have been testing his vision about once a week at home using an online eye chart that changes the letters so you can’t memorize them and from what I can tell – his eyesight has been very stable if not a little bit better. So here’s to hoping that I’m not crazy. Kirk has witnessed these “eye exams” and I think would concur with the results.

So, keep your fingers crossed or your thumbs pressed if you’re feeling a bit German on Monday. Kirk is feeling a bit German already – he is up in Bemidji for orientation for camp. He rode his iddy-biddy motorcycle up this morning. He was a bit chilly and got a bit wet, but otherwise fared well, I think. I’m looking forward to having it up at camp because my plan is to finally learn how to ride it. There is a lot of running about close to home that could be accomplished on a much more fuel efficient transport such as a motorcycle.

So anyway, I’m single parenting this week, which will not be bad at all since I’ll send Berit and Torben to extended days a couple of times and Kirk’s mom will have them two of the days – the week should go quickly and a lot of it will be spent packing (or repacking what the kids pack). They are all itching to get up there – it’s been really fun to see them so excited.

I’m off to sleep. I’ll be sure to post Monday or Tuesday (when we actually see the neurosurgeon) what we find out.

So we went to the neurosurgeon’s office today where his lovely assistant used the nifty drain in Espen’s head – it worked beautifully, except the wrong stuff came out. We only got CSF (cerebral spinal fluid), which, in case you’re wondering, looks exactly like water, so the expression “water on the brain” for hydrocephalus is pretty darn on the mark.

Unfortunately, the cyst that we want to drain is at the very end of the catheter so it was iffy as to whether or not it would work. The catheter as I understand it has holes in it so that it can drain they cysts from multiple spots. The problem for us is that the CSF drains into it more readily than the stuff in the cysts, so that’s all we got.

We did have some fairly good news however, which is that the cysts are definitely stable. We were able to compare MRI scans and they have not changed since the March 30th MRI. This means that the radiation is hopefully doing its job. If you’ll recall, Espen’s cysts grew lightning quick between November and February and they grew again after they were decompressed in mid-February, but they essentially stopped growing sometime between March 4 and March 30, presumably due to the radiation that started on March 23.

So, what this means is that we wait. The hope is that the radiation will do its work and shrink the cysts. If this happens, we don’t have to touch them – always preferred. As it is now, the ONLY thing that is affected by the cysts is his vision in the right eye – he is otherwise healthy and isn’t having headaches or anything like that. Since his left eye is seeing 20/40, his brain isn’t using his right eye, so he’s only affected when he closes his left eye. We’ll put up an eye chart and check him pretty regularly to make sure nothing is getting worse. We’ll do another MRI just before we leave for camp in about 5 weeks. The hope at that point is that the cysts will still be stable. If they decide to start shrinking a little, that would be a big bonus. If they decide to grow, we’ll decide from there whether or not to decompress them. It will ultimately depend on his vision, I would guess.

So here’s to hoping that the radiation will shrink it down and improve his vision. He’s doing great – enjoying the last few weeks of school. As the nurse practitioner was talking to him about the plan and mentioned that we’d explore surgery at a later date if we needed to he responded nonchalantly “That’s fine, whatever.” He is a thankfully very level-headed kid!

Espen has completed the second of his three circus shows and is currently resting up for the final matinee show tomorrow. We’ll all go and see the whole show with both grandmas at 1. Kirk went to last night’s show and got some video (although he discovered he was poorly placed to capture Espen’s announcing). Below you’ll find a snippet of his performance.

He continues to do great this week and has stepped right back into school as if he hadn’t been gone. We’re pleased. He did have an MRI on Wednesday, and we learned today that the cysts (or a cyst) is pressing a bit on the optic nerve, so one of the RNs in the neurosurgeon’s office will drain it using his reservoir. It’s an in-office quick visit, drawing out fluid with a needle. In many ways it’s nice to do this now, and feel that he’ll have a good amount of time now for the radiation to do its thing without constantly wondering how big the cysts are. Hopefully it will also bring his right eye back up a notch or two on the eye chart.

So, there you have it – a good week home. He seems to be jumping back in to things well, his parents are still catching up on sleep and bills and… but it’s good to be home.

And now, on with the show:
Click here to see the video in full-size, or if below doesn’t work.

Well, here in St. Paul, the Circus is always in town, however, the May shows are only (wait for it) in May. Espen’s class did their show last week. If you faithful readers recall correctly, we were in Boston last week.

So we showed up at the dress rehearsal for the Purple Show this week yesterday not knowing exactly how Espen would be incorporated. The Purple show unicycling team is made up of Unicycle I students and Unicycle III students – the 3s obviously know what they’re doing – beyond what Espen can do. The 1s are beginners – Espen can do what they do and more. We started by finding his costume which he had yet to try on. Luckily, the jacket fit perfectly and the costume itself just needed the shoulder straps shortened. On the spot alterations and it was good to go.

Shortly after the costume fitting, I mentioned I was headed to the bathroom and that I’d meet him in the seats. When I returned, I asked some friends if they’d seen him and they pointed him out – he was hanging out with the ringmasters – working on his lines. He’s going to introduce the Unicycling act with one of the ringmasters – very, very cool. So he had two shots to work on the introduction with full microphone and audience, as well as the unicycle act itself. The unicycling part is quite simple. The lines are also fairly simple, but even I get tripped up on the last one. So everyone keep your fingers crossed around 8:15 tomorrow night when he makes his debut.

Betty, from Circus, emailed today and commented that he was awesome and wondered if it was ok if she introduced him during the show and told about his journey. She wrote a really lovely introduction that will make me cry every time I hear it. A great reminder of why we love the circus – awesome people and the most encouraging environment there is.

So, if anyone in our area is game – his shows are Thursday and Friday at 7 and Saturday at 1. Thursday has seats available. Friday is sketchy and Saturday is sold out. For reference, he is in the first half, which usually wraps up around 8:30, so you wouldn’t be obligated to stay for the whole thing to catch his act. If you do come, be sure to let us know and we’ll find you during intermission to say hi.

In other news, he had an MRI today just to check on his cysts. I took him to the neuro-opthalmologist in Boston last week and the vision in his right eye is not so great again – 20/200 corrected. Keep in mind though that his brain doesn’t really use that eye – it uses the one that sees 20/40. Anyway, the MRI is just to make sure that the cysts aren’t causing this. If they are, we need to decide how to address it. The other option as I understand it is that the dilation or whatever you want to call it in his carotid artery could be decreasing the blood supply to that optic nerve – in which case, we can’t do anything about it. We won’t have results for a few days but will inform you if there is anything of note. In the meantime, on with the show.

And we’re there.

He’s done. He’s rung his bell. He didn’t hit his head, he went and rung the “I’m finished” bell. He then got a Boston sweatshirt and a Harvard long-sleeve Tee from the Dr. and nurse and his Dr. gave him a very special gift – her finishing medal from the Boston Marathon, engraved with her finishing time and then a note “To Espen, from Shannon.” Verrry sweet of her.

Finishing bell and poem.

Espen ringing the bell.

After our celebrations (and toy pickup – Espen got Chinese jumprope to go with last week’s Cat’s cradle) we found his ‘running’ doctor to present him with his sign that Espen made with a note on the back and then it was off to Mike’s Pastry to get celebratory Lobstah Tails – not tails of lobsters, but a flaky moscarpone-filled pastry delight the size of your head. We drove off to Aunt Jodi for lunch and said tails and now it’s time to hit the road. First to Erie, PA, and tomorrow to Madison before arriving home Sunday.

Ciao!

Celebratory Lobstah tail

Yay for Tuesday. We had a low key morning and early afternoon – got the bike trainer working again. I had to reinstall it on the computer. In the meantime, we’d been doing some workouts on Exercise TV on comcast on demand – not bad.

We got chauffeured into the hospital today by the lovely Jean. She wanted to come in and see the fancy machine. Phil, one of the technicians who comes out to get Espen and do his treatment, was feeling particularly plucky. Espen had mentioned that he’d been working on spelling this morning, so when we went back into the room, he initiated a spelling bee. Espen was giving out words for us to spell. I correctly spelled enthusiastically and phlegm and I believe I aided in the correct spelling of doilie, although wikipedia says you can also spell it with a y on the end. Phil wanted Espen to give the other technicians one more word – so I told him to toss out craniopharyngioma – we stumped them there.

As Jean and I were leaving the room, I asked what she thought. I cannot repeat her words in a family friendly blog, but they were such to indicate that she was thoroughly overwhelmed by the fancy machine. She asked what I thought when I first saw it and I said that I thought “Well, obviously this is where we should be” and it has rung true. Although I am very ready to go home, I would not have done anything differently. This has been the absolute best place for him to be.

Tomorrow is the last day with Music Lorrie and Thursday the last day with Art Stephanie. We’ll meet my sister and brother-in-law for dinner tomorrow night and have dinner out with Jean and Margie on Thursday – no more cooking for me!!! I am very much looking forward to going back to normal eating habits when I get home. I still have a lot of work to do before Friday so I am off to write a bunch of questions about clouds for second graders. Yes, I have a cool job.