One year later...

Today is the one year anniversary of Summer’s diagnosis. As my friend Casie said, anniversary is too happy of a word to mark such an event, but I can’t think of anything else to call it.

So much has happened in the last year. Most of the time it seems much longer than that, like we’ve been dealing with this forever. It’s so normal for us now, that I can’t really remember what it was like to not know this brain tumor was a part of our lives. To worry about “little” things like ear infections and colds instead of cyst re-accumulation, tumor growth, hormone deficiency and shunt failure.

I commented to someone the other day that this next baby probably won’t get nearly as much sympathy from us for the minor things. Like shots? I used to get so stressed out about Summer’s vaccinations when she was a baby. Now? Pfft. Big deal. 

Over the past few days, I’ve been reading back through my earliest posts on this blog. It’s amazing how much you can forget in just a year. I’m glad I wrote it all down as it was happening. 

Here’s the roll call of what we’ve been through in one year:

• 5 surgeries total - two craniotomies, one reservoir to VP shunt conversion, port-a-cath placement and port-a-cath removal
• Intracystic Interferon therapy – the chemical therapy injected directly into the cyst
• 28 days of proton radiation
• Countless appointments, blood tests, MRIs, CT scans, VEP and vision tests

It’s a lot! Thankfully, Summer has come through it all with flying colors. 

We have yet to make it six weeks without a doctor’s appointment, and this six week stretch I was getting optimistic about has turned out to be no exception. I forgot she had a dentist appointment yesterday, and we have an appointment at Children’s on Wednesday for a study we’re participating in. 

The study is to try out a new comprehensive care plan, with the goal of better co-ordination and communication between primary care physicians and the specialists at Children’s for patients with “complex medical needs.” When I first got the invitation to participate, I actually chuckled a little bit – it’s strange to think of Summer as someone with “complex medical needs.” 

Of course she’s been through a lot, but on a day to day basis, she’s just a normal kid. We’ve been very lucky in that way. She’s retained every bit of her personality - the smarts, humor, stubbornness and sass we always knew she had. 

What the nurse told us after Summer woke up from her very first surgery is absolutely still true: "this girl does what she wants!" Just ask her ballet teacher. She constantly interrupts class, wagging her finger at the teacher and saying things like “Hold on. I just need to make a phone call.” Or “Wait, I’m going to go eat dinner.”

So what do you do when a year goes by and your kid is doing as well as Summer? You celebrate! I haven’t had the time or energy to plan very well this year (they SAY you’re supposed to have tons of energy in your second trimester, but chasing after Miss Energizer Bunny drains every ounce it). Maybe next year we’ll have a party. 

For tonight, I think the three of us will have to go get ice cream cones at the drive in or a mini cake with lots of frosting from the bakery. Maybe both! 

Great MRI today

Summer had a HASTE MRI this morning. Jason went in with her for the scan, and she didn't enjoy being strapped down to the table but calmed down as soon as the machine started going. The scans at Childrens are SO much faster than the ones in Boston - 10 seconds, vs 5-7 minutes - so it's much easier to get through.

We saw the neurosurgery nurse practitioner immediately afterward to have her shunt magnetically reprogrammed, and she told us the scan looked great.

After picking up the obligatory lollipop at the gift shop, we met with the oncology Nurse Practitioner, Cory, to review the images in detail. The cyst looks nice and small, and her ventricles are now a normal size for her age; they were compressed previously because the cyst was pushing everything around in her head.

I always feel a little awkward asking for scans before they're "due," but Cory was very reassuring. She gets that we've been through one heck of a year and that we're going to be a bit overly cautious until we've had a few of these good ones under our belts. It was such a relief to have a peek at what's going on in there!

Summer will have a full MRI on June 2nd (6 weeks out) to check in again. Assuming no complications before then, that means we have a six week vacation from doctor's visits! That might very well be the longest break we've had in a year.

MRI on Monday

I just realized it's been a month since I posted last, so I thought I'd share a quick update.

Summer has been doing mostly well over the last month. She was sick for about a week, which prompted us to start a stress dose (3x what you would normally need) of hydrocortisone to help her body cope with the illness. It was as a precautionary measure the endocrinologist recommended because her cortisol levels hadn't been tested in a while. If her body wasn't naturally producing the cortisol it needed, this type of flu-like illness could have been very dangerous for her. Luckily, her levels ended up being just fine on their own, and we were able to wean her off the medication last week.

A few days before she got sick, Summer started sleeping poorly, was especially irritable, and not interested in food at all. At the time, we didn't know she was getting sick, so this concerned us a bit. We also hadn't heard back from Dr MacDonald about Summer's last scan (from March 4th), and how it compared to the most recent scans done in Boston (our doctors here at Childrens only had one from early January to compare to, so we were interested to see if it had changed since the mid-February scans from Massachusetts General).

It turned out that the records never made their way to her, so I requested them from Childrens again. We had gone back and forth with Dr Geyer about the time frame for the next scan and were originally going to wait three months unless Dr MacDonald wanted one sooner. Since Dr MacDonald hadn't yet received Summer's most recent scan and we were getting a little worried about the irritability, I decided it was time to push for scheduling her next MRI. I sent an email to our team at Childrens outlining our concerns, and we now have a HASTE MRI on Monday morning (4/18) to check the cyst size.

Since Summer has recovered from being sick and is back off the hydrocortisone, her behavior has mostly returned to normal. We also heard from Dr MacDonald that the overall cyst size was stable, with some minor increases and decreases in various pockets of the cyst. I'm no longer terribly concerned about what the scan will show, but we're keeping the appointment for the peace of mind.

I'll post on Monday to let you all know what we find out.