3 years and counting

It’s been quite a while since we’ve posted anything on our page.  It’s about time.   What’s been happening in the last while since we’ve made a post?  A lot of nothing punctuated by jubilations as well as the familiar feelings of helplessness.  But, overall, I think it is safe to say that we’ve moved from being the cancer family to a cancer survivor family.

In February, we’ve made our annual trek down to Memphis, TN.  This time around, we drove the 1000 miles trek.  Maya has a lot of “dead space” in her lungs and she is not suppose to fly.  So we drove.  The visit was hectic as usual and we rushed from appointment to appointments trying to squeeze in all the visits we were supposed to.  Succinctly put, everything is fine as we could expect.

Her counts are good.  Her chimerism is 100%.  Her lungs have stabilized and don’t expect additional deterioration.  We don’t have any room for further deterioration.

Maya is enjoying her life to the best that she can.  She is active in drama, violin and has sleep overs with her friends on a regular basis.  She is doing well in school, and while we, as parents would like her to do better, it’s nothing to complain about.  We do have to deal with lung issues, especially during the flu season.

And we do have to be careful for pneumonia.  And while we would rather be home, we have about a weeks stay here at Sick Children’s hospital here in Toronto.  Friday morning, Maya was a bit off, but well enough to go to school and even go on  a play date.  She was a bit under the weather Saturday and broke 40 degrees during the evening.  So, on Sunday, we decided to bring her in.  Yup.  Another day at the emergency.  Off we go.

And we settled in for a long day.  Maya was complaining about a soreness around her left chest area.  We gave her some tylenol up to now, but it was no longer cover her discomfort.  She was starting to ask for morphine.  And in the mean time, the chest X-ray showed some opacity that was thought to be pneumonia.  Well, we’re in for at least 48 hours.  In the course of about 1 hour, her pain became acute and Maya was screaming her lungs out due to pain.  Screaming didn’t help either.  It caught us off guard.  How can she go from being ok to screaming her lungs out in a matter of minutes?

Thankfully, our emergency doctor was Dr. Moss;  Maya’s old paediatrician.  He was the one who got us to come to Sick Kids when we were first diagnosed.  And we hadn’t seen him until very recently, back at sick kids emergency.  He was still troubled with the not catching the Neuroblastoma earlier, some 7 years ago.  I never looked at it that way.  If anything, he caught it early enough that we still had a fighting chance.  Had he not caught it when we did, 7 years ago, the story could have turned out much differently.

Well, hydromorphone was ordered right away and within 15 minutes or so, Maya was drifting off into the opiate induced dream land.  Thankfully, we were lucky today.  Had we waited, the amount of pain that Maya would have had to deal with would have been significant.

So, here we are.  We have pneumonia.  It’s not a big deal.  But for us, it is something that we have to deal with.  In the world of paediatric oncology, often, the ups and downs can occur within minutes.  For us now, these dramatic events are starting to come at a slower pace with less intensity.

A good part of Maya’s life was written for her.  It was written by her doctors, nurses and importantly, by her parents into her flesh. But regardless of the track marks, and puncture holes and scarred lungs, her spirit remains high, inspired and full of life.   We will go on with these visits and undoubtedly, some will require hospitalizations.

She may not be able to climb a flight of stairs, but Maya will always smile at Don, our crossing guard.  Maya will not be able to run with her friends, but she will always be a giant among her friends.  Maya knows the difference between morphine and hydromorphone and knows when she needs to listen to her body.  And while she may have spent more time in hospitals than most, she will engage her life with fervour and gusto that betrays her young age.   She will impress you with her positivity and her zest for life.   You would never know… how challenged she is.  And that’s just a beginning of a little girl who came to show how to live like a giant!