Smarchy smarch

So, it's March now and we just got slammed with another snowstorm--one on Monday and another good dumping last night. Great for our snowshoeing expedition coming up this Saturday, but not so great for those who are suffering from severe cabin fever (ie: me and the girls!) and were hoping the groundhog was right this year about the early spring. Sure, it's just March, but with that freakishly warm weather we had a couple of weeks ago, things looked promising.

We are all restless these days--B wandering from room to room, jumping on the sofa, clinging to my legs, begging me to come up with new games or craft. I know how she feels. I feel like I am just wasting away the days here in the house, scratching my itchy skin (I hate winter dryness!) and longing for sunshine and greenery. Don't get me wrong--there is plenty laundry and dishes and vacuuming to do, but man--I just want to open up all the windows and let in some fresh air!!

B needs to expend some serious energy this morning, so I am about five minutes away from calling to her to put on her boots and coat, so we can go out for a bit and play in the snow before Avie wakes up from her morning nap.

Just thought I would update anyone who is still tuning in about last week's first off-treatment appointment. All is well. The oncologist is quite happy with Brooke's recovery and progress. Since Brooke had no re-admissions, no blood transfusions and no fevers, she does not anticipate any additional problems and has even put an order in to schedule a day surgery to remove Brooke's port.

Typically, the oncologists leave the port in the body for six months post-treatment (in case of a relapse), but B's doctor thinks we can remove it now. I'm thrilled--as the whole treatment thing doesn't seem officially over until that surgery is completed and the weird central line and port pump are out of my kid. Here's hoping that the surgery takes place before I return to work!!!

Also, Brooke will be switching clinics, so now she will be in the 0-24 months clinic at CHEO, which just means she has a new case manager (the person who handles all of B's appointments). The 'road map' as the oncology nurses like to call it, is pretty much as we expected.

Basically, B will still continue to take the Septra antibiotic until June. At that time, Brooke will also receive some blood tests to determine if she is still immune to the vaccinations she has had to date. (We'll need to revaccinate her for chicken pox and measles and whatnot if the chemo has killed the immunities in her body.) She will also undergo MRIs and CT scans every three months for the next two years to keep on top of things. She will receive both tests every three months for the first year, then alternating MRI and CT for the second year. And, sprinkled througout those appointments will also be echograms and cardiograms. So, lots of visits to the hospital still in our future--even if she doesn't relapse (which, of course, we pray she does not!).

Once she has been off-treatment for two years, she'll still be monitored (although less often) for another three years until she has reached the five-year survivor point. If after five years, she has not relapsed, then she is considered 'cured.' Can we get to five years already?!?

Lastly, Avie was given a date for an ultrasound as well. The chance that Avie has familial Wilms' tumour is pretty minimal (I think the oncologist said it was about 2% of cases), but she offers an ultrasound for any additional children as a way of giving parents' piece of mind. I jumped on the chance to have Avie checked out, too. With our luck, Hubby and I's combined DNA create some sort of genetic mutation that is prone to tumours! Hope not.

Anyways, fresh air beckons, so off I go....

A week full of paperwork

This afternoon will be Brooke's first off-treatment appointment, so I'm kinda anxious to get it over with. I'm hoping for good news. I don't anticipate any bad, as the CT scans all came back clear--but you never know. I've been lulled into optimism before, only to be told something different a week later. This has made me cautious, of course.

I'm also hoping we receive a date for Brooke's surgery to remove her port. Won't seem like the treatment is officially done until that thing is out of her. Physically, it doesn't seem to bother her, but knowing that a surgery (even if it is a day surgery) still looms in the future makes things feel 'incomplete' (for lack of a better word), I suppose. I know B will still be on antibiotics until June, but hopefully, the port won't have to stay in until then, as well. Will find out more, today.

So, lots of paperwork for Canadian Cancer Society and POGO this morning. Boy, do I love paperwork. Blech! Seems like filling out countless pages of forms is all I have been doing for the past week.

Ages ago, our interlink nurse had told us that Brooke would be eligible for a wish when she turned three years old. We thought nothing of it at the time, but a few weeks ago, she suggested that I apply for Starlight's Great Escapes program (a program that offers families of seriously ill children neat experiences and fun activities--like Sens tickets, magic shows, group picnics, etc.). She again mentioned applying to Make-a-Wish Foundation of Canada or Children's Wish Foundation for a wish for Brooke.

I filled out the forms for Starlight's program at the hospital, but hesitated when it came to Make-a-Wish. I'm not certain how comfortable I am with an organization giving my daughter something so...significant. Seems too big. Seems too greedy. Seems like there are others out there who need wish-granting more.

Finally, after visiting the Make-a-Wish Foundation of Canada website and reading some of the amazing wish stories and shedding too many tears for kids who have so undeservedly suffered and parents' hearts that have been dragged through the mud, I decided my kid deserved a wish. She's been through hell these past eight months and could certainly do with a little magic in her life! So, I applied for a wish for Brooke.

I was under the impression that this great organization only grant wishes for terminal or chronically ill children and since Brooke is neither, I figured nothing would really come of it, but it wouldn't hurt to try. But, a Make-a-Wish rep called me back that day to confirm the referral and tell me the process had begun. The woman also told me that there were lots of children who wanted wishes, so I figured this was a polite way of saying that B would be added to a list, but as she is not terminal or chronic, she's hardly high priority. Seems fair and is fine by me.

Then, last week, I was surprised to find a large package from Make-a-Wish with numerous forms to fill out. Looks like most of them are travel-based forms, assuming that the wish would be a trip. (Of course, Brooke's primary wish is to meet Ariel, the Little Mermaid, and the other Disney princesses--so yeah, they assume correctly--a travel wish.) But, they also ask the wish child to provide two additional (non-travel) wishes, should the travel one not be possible. We'll see what comes of all this. Could just be standard-procedure paperwork.

So, we've been busy filling out all of these forms in order to get the application back into the mail this week. And, then, a day later, I received Brooke's school registration package (open house is this Thursday--ohmigawd--I can't believe I'm registering my baby for school! Wasn't she just 2, like, yesterday?!?). More forms. Yeah.

Then, on the weekend, I decided to renew Brooke's passport (since it expires in a few weeks time) and to get Avie one. No idea if we'll need passports for the girls anytime soon (maybe a weekend getaway to Lake George this summer?), but better safe than sorry. And, frankly, since I was already knee-deep in forms, why not get it over with, right?

Every night this past week has seen me sitting at my desk, printing (in block letters and in black or dark blue ink, of course)--first name, last name, additional legal names, address, birthdate, ''I do solemnly swear''....very tedious work, as you can imagine.

I'm kinda hoping that there will be no new forms to fill out at the hospital this afternoon, but, just in case, I'm bringing my pen.