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!