Alot has happened since our last post on 2/22... sorry for the delay! Greg and I forget that not everyone is on Facebook...
Campbell finished up the third, and last ever, round of proton beam radiation therapy in Boston on 3/20. I say the last, because it truly is the last. She cannot have any more radiation to her brain or spine. This is frightening for us. Radiation is the best treatment option for Ependymoma. This means if it comes back again, Campbell cannot have the best treatment... We hope and pray that this will never happen!
We came home from Boston on the 20th. Cam had a restful week at home, waiting for clearance to return to school. Well, antsy really. Cam REALLY wanted to go back to school and was not very happy about waiting any longer! She was cleared on the 3/26 and returned to an awesome welcoming by her class on 3/27. They greeted her in the hallway with hand-made party-hats and signs reading "Welcome Back" and "We missed you". It was touching and amazing. Campbell was all smiles :-).
The last few weeks have been fairly normal (a nice change for us). We've slowly gotten back into the routine of our normal life. Of course, this includes doctor's visits. Cam needed another transfusion while the girls were off from school for Spring Break. This was the fourth transfusion since December! The combination of chemotherapy and radiation to the spine have done a number on her bone marrow. The doctor's have warned us that this will probably be the norm for Cam while on chemo, although hopefully the frequency will start to lessen. Between 2/16 and 4/2, Campbell had three transfusions! The effects of the radiation will weaken the further out we get from completion. We are optimistic that her bone marrow will start producing new healthy red blood cells soon.
Greg and I have been struggling with learning the ins and outs of our new insurance policy. (His employer changed providers as of January 1). As you can imagine, for someone with the extraordinary circumstances like Campbell, new insurance is daunting. We've recently learned that all was not as it originally seemed and our co-pays have skyrocketed. Cam's meds, which previously cost approximately $300 per month, are now $500. Clinic visits, previously $25 each, are now $50 each. It seems small, but Campbell goes to Clinic at least every three weeks, sometimes as often as 4 or 5 times per month! Her MRIs, which occur at least every 3 months, sometimes more frequently, were previously $25 per visit. They are now $1600 each!!! Ouch! And this is a co-pay. They ARE covered. The actual cost billed by the hospital for one of Campbell's full brain and spine MRIs averages $25,000. Can you imagine if we didn't have insurance??? Oh, that is enough to make my heart skip a beat!
With all of these increased costs in mind, several local groups have hosted quite a few fundraisers for Campbell. We would like to take this opportunity to express our deepest gratitude to the Watchung Hills Lady Warriors Basketball team for hosting a "Gold Game" against Bernards High. The teams sported gold laces, sold gold t-shirts and auctioned off many incredible items, all to raise awareness for the epidemic known as Childhood Cancer and contribute to Campbell's medical trust.
Heartworks, a local grass-roots non-profit organization whose focus is on acts of kindness, has been incredible. They truly leave me speechless (which if you know me, is difficult to do) each time I try to describe the difference they have made in our lives. They provide emotional support, offer prayers for healing for our sweet Cam, send reminders to Caitlin and Caroline that they are just as important as Campbell, fed Greg and the girls while Campbell and I were in Boston, drop off random gift cards for a little treat at Starbucks, for a girls' outing to get our nails done, pizza for dinner on Fridays during Lent. In addition to these many "little" things, these amazing women hosted a pie fundraiser last fall and a Valentine's pop sale in February, both benefitting Cam's medical trust.
An incredible group of local women, who have labeled themselves the "Sister of the Bar" (and no, not THAT kind of bar :-) - they exericse together at the Bar Method in Bernardsville), sold awesome t-shirts during the holidays to benefit Cam. They have now teamed up with Atelier Salon & Spa in Basking Ridge to host a "Cuts for Campbell" benefit on Sunday, April 29th. The Salon will be open from 10-4, with all services available and all proceeds from services that day going to Campbell's medical trust. If you are interested in making an appointment, contact the Salon directly at 908-766-4630
Lastly, Campbell's fans have moved beyond the Bernardsville/Basking Ridge area. The bowling team from JP Stevens High School in Edison, NJ, who have never met Campbell, hosted a fundraiser on February 28th. Their coach is a neighbor and friend of Campbell's grandparents in Dayton, NJ. Unbelieveable. The kindness of people is astounding. These are kids who have no personal connection to Campbell. There event is called GAGA, for Give a Gift Away. The gift they gave away that day has already made an impact on Campbell's life.
Even bigger than simply helping Campbell, all of these events have raised awareness for a subject very close to our hearts. Childhood Cancer. Before Campbell was diagnosed, I would turn away from the St. Jude's commercials, the bald children were too sad to look at. I am embarassed to admit my shameful behavior. Campbell's diagnosis opened my eyes, Greg's eyes, Caitlin and Caroline's eyes... the list goes on. I was disturbed when I starting researching about cures. There is very little federal money spent on Childhood Cancer research. Even worse, many organizations who I instantly thought would be a good avenue for research for kids like Cam, shocked me when I learned they spend $.01 of every dollar raised on kid's research. That's it. The kids are our future.
I have become very vocal of my disdain for these organizations and praising organizations like St. Baldrick's, Alex's Lemonade Stand, Cookies for Kids' Cancer, CureSearch and last, but certainly not least, the CERN Foundation. The CERN Foundation is the one organization that will best be able to help Campbell, and the other 6% of childhood cancer patients diagnosed with Ependymoma. Their sole focus is researching a cure for Ependymoma. In fact, today, April 19th, 2012, is the first ever Ependymoma Awareness Day. In celebration of today, I ask all of you to continue to raise awareness. Tell Campbell's story, including the name of her cancer - Anaplastic Ependymoma - to one new person. It is through awareness that funding will be raised and a cure will be found.
With love, gratitude and humility,
Robin
