The bell

Yesterday I witnessed a fellow ependy child ring the bell at MGH.  A child whose mother I have "known" virtually for a little over a year.  We are both part of an online/email support group for parents of children diagnosed with Ependymoma.

It was a bittersweet moment, full of pride, anticipation, excitement and yet overshadowed by fear.  At least in the confines of daily radiation, our children are being watched closely.  As parents, we take comfort believing that if something were amiss, these trained professionals would catch it before we would.  However, without the dreaded MRI, no one can say for certain that there is nothing growing in our child's body that shouldn't be there.  Unless your child has become symptomatic, which as parents we would certainly notice before medical staff, there would be no cause for suspicion.  And yet, even without the MRI as evidence, we breath a little easier knowing that smarter people are closely observing our children each day while here.

Once you ring that bell, it's another story.  The weight transfers almost immediately back onto the already sagging shoulders of Mom and Dad.  The knot in our stomach grows tighter and tighter as we get further and further from the watchful eyes of the medical staff.  I thought I was ambivalent about Cam's bell ringing in a few weeks.  That was until I watched Stephanie yesterday. 

Stephanie is an amazing, sweet, incredibly bright and VERY brave 6 year old girl.  She is the one I mentioned on Facebook a few weeks ago that did all of her radiation treatments without anesthesia.  She then taught another 6 year old girl to do the very same thing.  Wow.  They are just awe-inspring.

As I watched Stephanie, my eyes filled with tears, as they did nearly two years ago when I watched our buddy Jaxson ring the bell - the first pediatric bell ringing I witnessed - and as they did at my own child's first bell ringing.  For weeks, I just have not felt this same way.  Perhaps it's fear getting the best of me; perhaps wanting to stay on my own little Island of Denial; perhaps it's pessimism.  Last time, the bell ringing seemed like closure.  It was the end of a very ugly Chapter in our life.  This time, we are still in the middle of it and will be for many more months.  I know that radiation is probably the easiest time Campbell will have for the next year.  Maybe that's why I don't feel the hope the bell ringing promised me last time.  Maybe I think it lied.

Even with the lies, I will continue to pray for good news.  I can't NOT pray for good news.  That would be defeatist.

Stephanie is also a "odd" Ependymoma case.  Odd in that her tumor decided to grow in an unusal location, much like my Cam's.  Stephie's grew on the top of head, and decided to come back twice in that area.  Cam's first one was in the typical Ependymoma location (Posterior Fossa/4th ventricle - at the lower back of the brain), and her recurrence moved to her spine.  Ependymoma's favor the Posterior Fossa and if they come back, they usually do so in the original location.  In the last few weeks, I've often talked about Cam and Stephie being the "oddballs" who just had to be different.  Tonight I pray that they will continue to be different, that they will defy the odds; that their Cancer does not come back again; that we will see each other each year back in Boston for the annual check-up with Radiation Oncology.  It was a blessing to meet Stephanie, her sister and her mother.  Her mother who was a rock and made their 8 week stay in Boston a little vacation with pit-stops at MGH each day.  Theresa inspires me.

I am pouring a glass of wine right now, and toasting Stephie and her family.  Here's to many, many, many years of NED scans!

From Robin's Perspective

So, for nearly two years now, I've let other people - Mike Chidsey, Chris West, my brother-in-law Mark and, for the longest time now, Greg tell the stories on this blog. Tonight, for whatever reason, I decided it was time for me to chime in.

Today was Cam's 8th radiation treatment back at MGH. 20 more to go. We've been away from "the girlies" for 11 days now and it is killing me. Greg has been gone for 7 days. I truly feel like I am here, with Campbell, but my heart is torn in two. I know that I must focus on Cam and entertaining her, so that this ordeal is not as "boring" for her, but so often throughout the day I miss my other girls. I miss nagging at Caroline and smiling knowingly at Caitlin (who is a mini-me) since I can read her mind. I miss hearing Campbell calling Caroline to play Bahbies (and yes, I mis-spelled that on purpose. The one seemingly permanent souvenir of Cam's Cancer treatment in Boston is the Boston way of saying Barbies :-) I'll take it. It's kinda cute.) I miss telling Caitlin to clean up her room, doing laundry, muttering under my breath as I pick up yet another dirty towel on the bathroom floor, writing grocery lists, staying up late working, crawling into bed next to Greg, who has left the light on for me while I stayed up working until well past midnight - only to get up and do it all over again tomorrow.

Through this all, I know that we are very blessed. We are so very fortunate to be staying at Christopher's Haven. We've met some amazing families, many of whom have endured more than we have. They have given me a new appreciation, again, for what we have. Even as I wait to hear back from the doctor's on whether or not they will be starting Cam's chemotherapy earlier than originally planned, which will most likely lead to an earlier disappearance of the beautiful blonde curls that I so love to play with, I still appreciate what we have. Cam is tolerating the radiation well, even being a trooper about not being able to eat until after her treatment each day (which so far was as late as 2:10pm). Her energy level is amazing. She exhausts me. I look at her with awe every day.

She has made a few new friends at the apartments, which has been such a God-send. She anxiously awaits the end of the day, when everyone is back from their appointments, and Kennedy can come out to play. It's nice to see her acting like a "normal" kid. It makes me think of one of my favorite sayings "there is no such thing as normal, only degrees of dysfunction." Normal is what you want it to be. If this world of pediatric Cancer is my new normal (well not so new anymore since we are approaching the 2nd anniversary of Cam's original diagnosis), then so be it. But hear me stupid Cancer, we will win. I am sick of you. Pediatric Cancer may always be part of me now, but I will see the day when we can talk of how we beat you down.

Update - 8/5

The first 4 treatments of radiation are done!!!!

Cam came through like the champ that we all think she is. No nausea to speak of really and we were able to relax during the evenings.

On Monday, she had an MRI of her brain - just to get a baseline prior to radiation beginning. The scan was CLEAN! This is really good news.

On Tuesday, we met with the radiation oncologist while Cam was in for her treatment and she showed us the two spots on her spine that they are concerned with. They are both VERY small and they are hopeful that treating them with the radiation and chemotherapy witll be sufficient to keep them from growing any further and\or get rid of them completely.

Also on Tuesday, we moved into the apartment at Christophers Haven (christophershaven.org). It is only a 5 minute walk to the proton center where Cam gets her treatments so it is EXTREMELY convenient. Also, unlike a hotel, it gives us the opportunity to be with other families that are also going through treatment and share success and frustration with people that can relate with what everyone is going through. Cam has already met a few new friends and is looking forward to getting down to the "loft" to play with them again tonight.

Greg heads home tomorrow (begrudgingly) to keep our health insurance current. Caroline will come up with Nanny and Pop-Pop aroudn the 16th of August and stay for the majority of the remaining time and Caitlin will join her the last week of August. Greg will come up as much as possible on the weekends. With all the visits as well as the timing of Cam's treatments, we are hopeful that this will be behind her before we know it.

We spoke with the neuro-oncologist on Monday as well and they have decided to start chemotherapy the end of September - and will run for 27 weeks. So, hopefully, by next spring she will have yet another story to tell of how she kicked cancers a**.

For now, please keep praying for her and the amazing doctors that are taking such good care of her.

With Love,

Greg, Robin, Caitlin, Caroline and Cam