Saturday, July 23, 2011

Update - 7/23

Back in NJ!

We made it back from Boston after Cam's marathon appointments this week. The bonus was that we did get to spend a lot of time together and see many of the Boston sights.

On our way home, we got a phone call from Dr. MacDonald (radiation oncology) regarding the scan that Cam had on Friday morning. While the scan looked good, it unfortunately showed what they believe is tumor in the same field on her spine. They feel that this is residual tumor from the last surgery but in it is larger than it was a month ago.

We spoke with the neuro-oncologist last night after getting this news. She continues to be relatively optimistic that there is hope for our little friend and ensured us that if Cam's case WAS hopeless, she would let us know. Neither she nor Dr Robison (the neuro-onc managing her case) had an opportunity to see the scans yet but we will speak to them both on Monday to see what they think of the scan - but based on the description they received from Dr. Macdonald, they are inclined to agree that it is likely tumor rather than post surgical scarring. It will also be interesting to get the input of the neurosurgeon who was sure that she had removed the entire tumor. At this point, they remain hopeful that the treatment can fix this.

This new revelation does not appear to change the plan for Campbell in terms of radiation and chemotherapy. More to come this week as we prepare for her treatments to begin on the 2nd.

This sucks...

With Love,

Greg, Robin, Caitlin, Caroline & Campbell Grace

Thursday, July 21, 2011

Update - 7/21

Greetings from Boston!

A lot has happened in the past month since we last updated. Nothing all that interesting - unless you count Cam getting past her back being swollen.

We all spent some time together on LBI with Nanny & Pop-Pop and Aunt Moo. It was amazing to see Campbell, only 3 weeks removed from surgery, running and jumping waves with her cousins and sisters.

While we were at the beach, we got the a start date for protons on August 10th. Robin flew into planning mode to try and figure out housing and was able to get confirmation for an August 8th date at Christophers Haven - a non-profit that provides apartments across the street from the Proton Center for families whose children are going through treatment for $30 a night. Which is AWESOME!

The next day, we received an email moving Cam's start date to August 2nd...the best laid plans I guess...Robin, again, flew into planning mode and we are waiting to hear about a start date at Christophers Haven to see if we can get it to match the proton start date.

The good news about the start date is that it gets Cam's treatments started within the 56 day window that the oncologists like to have it started by - which also provides us some piece of mind as we want to make sure Cam fits into all of the "good" categories this time around.

This week, we are ALL up in Boston for her planning appointments. We have already met with the anasthesiologist, the radiation oncologist, the nurse, social worker and she has already had a CT scan. Tomorrow they will do an MRI which gets combined with the CT in order to map out the field and create and shape the beam that will be used on her.

We were hoping to meet/talk with the doctors over at Dana-Farber while we were here as well. Unfortunately, we were a little taken back by some of the comments by the radiation oncologist and her opinion that the tumor would MORE THAN LIKELY come back. This was NOT something that we had heard previously and, as you would expect, hit us from out of the blue. While we were both not of the opinion that anything was a sure thing, we had a lot more optimism prior to our meeting. We sent off a quick e-mail to the doctor at the Jimmy Fund but weren't able to schedule a time to get in to see him. Basically, we just want to hear that they are optimistic that this is something they CAN fix. Otherwise, why the F*&$K are we doing all of this?????!!!!! Can you sense our frustration???

We did get an email from them that said the magic word of "hope" in it but it is very scary to start hearing the terms "another recurrence" and "quality of life" being thrown around. Especially when you look at Cam today...this sucks.

We have had several good days here in Boston together. A lot of walking and sightseeing which Cam thought was "BORING" but the rest of us enjoyed! We saw the Old North Church, some old burial grounds, USS Constitution "Old Ironsides" and some more "old stuff" (as Cam put it). It's been a nice opportunity for us to all be together before the older two head off to camp and then Cam starts treatment.

Please say a prayer and send positive thoughts Campbell's way as she starts her next journey.

With Love,

Greg, Robin, Caitlin, Caroline and Campbell