Monday, September 28, 2009

Update - 9/28

Last night, Campbell was fever free! Her fever did creep up close to 100.3 but it brought itself back down again. We were discharged from MMH this morning at 5am and began our journey up to Boston to Childrens Hospital - Boston.

We met this afternoon with one of the neuro-oncology team who recommended the proton therapy for Campbell. This is based on the location of the tumor (and the surrounding sensitive functions - hearing, sight, memory, etc) and her age. Essentially, what the proton therapy is able to do is take the same dose of radiation and direct the matter in a very precise location while minimizing the side effects. That is is the theory. There is not too much data to base this on but the experience that they are seeing thus far, supports the theory. I think for us, the decision is mainly based on the potential upside even being present. The potential side effects may be similar to "regular conformal" radiation using photons, butthe potential upside is what really made our decision.

This was a HUGE decision for us. We want to get the best care for Campbell that we can and understand that there are sacrifices that will be made by all of us to make this happen. There is no way that we could have made that decision without the support we have received from our family and friends over the past 6 weeks.

They are still looking for the source of the fever. Tomorrow morning they will do an MRI (unfortunately Cam needs to be sedated for this) to see if they can locate any abcsess. Based on the images that we brought with us the neurosurgery team does not seem to think that they will find anything. If they don't we will most likely do another LP (spinal tap) to see what is going on with the white cells. Hopefully, this will show nothing and they will send us home on the current antibiotic regimen. It will also allow them to see if the bacteria is developing any sort of resistance to the current antibiotic and that they need to change it. This is all about what we expected.

For now, it appears as though we will be here until Friday. This will give them sifficient time to relaly see Cam and make some decisions regarding her care. They would like to start the radiation potentially next week but, as they did while we were back home, want to wait and get the infection under contol before doing anything.

We are glad to have the new eyes looking at the problem. Even though we have had to tell her story hald a dozed times already today, we are hopeful that it will lead to some resolution for her.

Please continue to pray for Campbell as we get closer to the next step in her treatment. Please also pray for Caitlin and Caroline that they have strength while we go through this together.

With Love and Grattitude,

Greg, Robin, Caitlin, Caroline & Campbell


  1. This is very encouraging. I hope as the week goes on you will get more and more answers, and that the infection will resolve. We will do everything we can on this end to be supportive of Caitlin, Caroline, and the rest of the family. Be strong. We love you. Give Cam big kisses.
    "Mrs. Lev"

  2. We are so thankful that Cam is feeling better. The kids ask how Campbell is all the time and we are hopeful to see her at Christmas. We are all praying for her and for all of you and your girls the strength and faith to see this through as a family.

    All our love,
    Stacy, Ryan and Katie