Summer is 4!

Yesterday was Summer's 4th birthday and it was sure a busy day! First day of preschool, first day back at ballet, and a birthday dinner at her favorite restaurant - Red Robin. Four years old already, I just can't believe it!

I was thinking back on past birthdays, especially her 2nd, when she was fresh out of her second brain surgery and had just started Interferon treatment, and I am so grateful for where we are now!

Summer is doing really well. We've been making some adjustments with her growth hormone treatment, but other than that there's not much to report! She is definitely becoming more curious about what has happened to her, and asks questions about it all the time. Trying to explain some of these things in preschool terms is pretty challenging, and she puts me to the test on a daily basis. Here's a snippet of last night's conversation:

Sum: "Mom, why do I have to have poke (what we call her shots)? I don't like it and you don't like it. Next time we see the doctor you should just tell her we don't want to do it anymore."

Me: "I wish we didn't have to, but you need that medicine to help you grow big and strong. It's something we have to do even though we don't like it."

Sum: "No, mom. Eating good food makes me grow big and strong. I don't need poke."

Me: *excited that she actually knows this because she doesn't eat like she does..."Yes, you need food too, but your body is...extra special...and it needs the medicine from poke to help the food make you big and strong..."

...and the back as forth continued for another 5 minutes. I think she just eventually got tired of listening to me and gave up.

I don't think I ever really expanded much here on her neuropsychology evaluation, so here's a quick summary: It was nice to hear that she has caught up to her age group on motor skills, since those were behind on her last evaluation, probably the result of vision problems prior to diagnosis and treatment. She's very advanced verbally, and a bit on the short-tempered side for her age. Those who know her well know there's nothing in those words that surprise us! :)

Summer's next MRI and round of follow up appointments are coming up on the 26th. We also have the Run of Hope on the 30th and we'd love it if you'd join us! We have raised well over $5,000 each year for the last two years, but we're a little behind the game this year. If you can join us in supporting this great cause, please do so here. Donations will of course be accepted until the day of the event, but if we reach $2,500 (or receive an individual donation of $1,000) in the next two days, Summer can be listed as an event Angel again, with her name on the t-shirts. Here's the link to donate.

Happy birthday to the smartest, funniest, strongest, most spirited and beautiful girl I know!

Another good MRI!

Just a quick note to share that Summer's MRI today went well - no change from last time - which is great news!

We have taken a short break from growth hormone because of the knee pain she was having at night, but will be starting back up at a half dose tonight and working our way back to her normal dose as long as the knee pain doesn't return.

They drew labs today for a number of things, including a Celiac disease screening, so we'll have those results back along with the results of her neuropsychology evaluation in a week or so.

Slacking

Okay, I know I've been slacking on the tulip post. I've been so busy with photography for my business (www.jessicalarsonphotography.com), that I haven't really gotten around to editing any of my own photos! Soon, I promise.

Last week, we started another phase of follow-up appointments, and Summer has an MRI next week. Everything is going really well so far. We saw endocrinology last week, and Summer has grown 3 inches now since December. Now if only she'd put on a little weight! I think she's actually starting to suffer from some growing pains at night, and I have a call back in to the endocrinologist to follow up on that. I think they'll probably wait to change anything with growth hormone until we get all the labs done with her MRI next week.

The endocrinologist also ordered a Celiac disease screening to go along with her normal labs since she continues to have tummy trouble. I'm curious to see how that comes back - you may remember I suspected some level of gluten intolerance a while back.

Summer also had a neuropsychology assessment this week, which she completed on her own while I sat in the waiting room. I'm so anxious to find out the results (next Friday), especially since I couldn't be in the room to see how cooperative she was. I think it must have gone well - she finished on the shorter end of the time frame they allow (2-6 hours), and was happy to go back in for more testing after her snack break halfway through.

Yesterday, my dad sent me a quote from Mark Twain about his favorite daughter. It could have written about Summer; it describes her perfectly. I keep reading and re-reading it, and thought I'd share it with all of you:


"She was a magazine of feelings and they were of all kinds and of all shades of force; she was so volatile, as a little child, that sometimes the whole battery came into play in the short compass of a day. She was full of life, full of activity, full of fire, her waking hours were a crowding and hurrying procession of enthusiasms ... Joy, sorrow, anger, remorse, storm, sunshine, rain, darkness -- they were all there: They came in a moment and they were gone as quickly. In all things she was intense: in her this characteristic was not a mere glow, dispensing warmth, but a consuming fire."

Love it. Love her!

An old one, but I immediately thought of this picture when I read that quote!

Two years ago...

It was two years ago yesterday that we found out about Summer's brain tumor and she had her first surgery. She's three and a half, so we've been dealing with this tumor now longer than we haven't.

And somehow, I completely spaced about it until today. I thought about it in the days leading up to the 29th, and I thought about it today, but I didn't think about it yesterday. I thought about the tumor, of course - that never leaves my worry list - but the two year anniversary didn't register.

Maybe that's a good sign - a sign that one day, 4/29 will mean nothing to us. It will be so far behind us that we won't even notice it's passing. Doubtful, since I am good at remembering numbers. Names and faces not so much, but numbers stick with me. Except, of course, on days like yesterday when I have no idea what the date is.

Luckily, we happened to be doing something fun anyway - we spent the day up at the Skagit Valley Tulip festival.

Two years ago:



And look at her now!

More photos to come from this beautiful day later.

It's that time again!

Registration for the Seattle Run of Hope is open!

What? A fundraiser and walk to support pediatric brain tumor research

When? Sunday, September 30, 2012 - races start at 10am

Where? Seward Park in Seattle

Last year, we raised over $8,000!

Join or sponsor Team Summer here.

Another round of follow-up done!

After a full day Wednesday, and one appointment on Thursday, we're done with another set of follow-up appointments, and everything came back great!

On Wednesday, we were at the hospital from 7:30 until 4. She had an MRI, saw Neurosurgery, Oncology, Neuropsychology and Ophthalmology.

The MRI went well. The anesthesiologist couldn't stop saying how impressed she was with how well Summer handles the whole process of going under. She actually looks forward to it now and gets excited when we tell her she has a "strawberry air" day.

Coming out of anesthesia is a completely different story. Sometimes she wakes up just fine, but usually (like on Wednesday) it puts her in a very foul and testy mood for a couple of hours.

The MRI came back stable for both the solid portion and the cyst, so that was great to hear! Nothing new to report from the Neurosurgery or Oncology appointments.

We met with the Neuropsychologist for a meet-and-greet, just to touch base and decide what sort of evaluations we should have done. Summer had a thorough neuropsych evaluation in Boston, and they recommended annual evaluations, so we'll have another one with the neuropsych team here soon. I also asked them about ADHD testing, and I think we'll do that too. It's my understanding that ADHD is a pretty common problem for kids with this tumor and Summer definitely has some of those symptoms, so we'll have to see where that leads.

Luckily, we had a little break after those three appointments. We went over to U-Village for lunch and let Summer unwind on the play area a little before Ophthalmology. It definitely helped her mood, and the Ophthalmology went well.

It was a very long day, but I love having nothing new to report from those appointments!

On Thursday, we saw Endocrinology and talked through how everything's going with growth hormone. Summer has grown an inch and a half since December (!!!), and she now weighs 29.5 lbs. The growth hormone seems to be working really well, so they don't plan to change the dose any time soon. It's amazing how much of a difference it has made in her body composition in such a short time. Just looking back at her Santa pictures, you can tell a difference in her face and her arms. She's just a lot leaner now.

The shots themselves are going really well. It's not a battle every night any more, which I am so thankful for. She still doesn't want to do it, but she doesn't put up a fight.

Summer has been asking about her tumor more often, and we do our best to explain it to her in three-year-old terms, but it's difficult! I'm sure she doesn't quite understand yet, but she'll get there. The other day she said to me "Mom, my brain tumor hurts." It was so strange to hear those words coming out of her mouth! Thankfully it was right after her MRI, or I would probably have been more worried. After a little more probing, I figured out she was just fishing for a band-aid. Funny kid!

Here's a video of her dance recital from Friday night. She's on the end of the back row, on the right side.

There is nothing benign about it

Before the title gets anyone worried about Summer, let me start out by saying she's great. Nothing new to report, other than a drastic improvement in how she's handling her daily hormone injections. Her next set of appointments are on 3/15 and 3/21, so I'll have more info to share then.

Remember this post?

The one where I ranted a little about surgeons who go straight for the whole tumor? Well, here's why I get so angry:

Yesterday, I found out a little girl died from complications of this tumor and the conditions caused when you do too much damage to that area. She was seven years old. What's worse? She is the fourth kid from my craniopharyngioma community to die in the last three months. Four kids. My heart breaks for them and their families.

I will continue warning people when I can. And I will try to be more forceful with my warnings. I know it's hard to live with this tumor in your kid's head. Boy do I know. But what's harder is living with (or dying from) the complications of being too aggressive when research shows you may not need to be.

What else can I do? We'll continue to raise money for research to help come up with even better solutions. This year, the Run of Hope is on September 30th. I hope you will join us!

Happy New Year!

One year ago today, we were on a plane for our first trip to Boston - the planning trip to get everything set up for radiation. It's hard to believe that was a year ago already!

Here's hoping we leave cancer treatments and surgeries back in 2011 and can move forward in 2012!

Since I've been a slacker the last few weeks, here's a quick December wrap-up:

Summer's MRI on 12/8 was stable! We'll continue with scans every 3 months until March of 2013, two years from the end of radiation.

Growth hormone therapy was approved, and we started injections the week before Christmas. It still takes two of us to get it done most nights. I have been able to give her the shot on my own a couple of times, but it takes all of my limbs to keep her still. I know it will get easier with time, but for now it's pretty awful.

Since starting growth hormone, Summer sleeps longer at night and doesn't seem to have much of an appetite (unless it's sugar you're offering). I noticed this morning that she already seems leaner. I'm not sure whether it's because she's growing taller or just eating less. We'll have another followup with the endocrinologist in March and I'm sure they'll check all her levels again at that time.

Other than that there's not much to report, thankfully! We hope you all had happy holidays and we wish you a great new year!