Update - 9/26

Our apologies for the lack of an update yesterday. There was a flurry of activity regarding Campbell so we didn't get a chance...

...So much for a Friday discharge....

Unfortunately, the fevers have continued over the past several days. Not extraordinarily high, but a fever none the less.

The CT from Thursday came back "normal".

Yesterday morning, Campbell went down for another spinal tap. This was, in theory, supposed to verify that the white cells in her CSF was continuing to trend downward and be only a formality before we went home. However, as we have all learned, theory does not so much apply to Cam. The white count actually went up (commence head scratching by doctors...) to 222 from 100 only days before. This leads them (ID and oncology) to believe that there is some sort of abscess in the surgical site that may be leaking fluid and causing the infection/fevers. In order to verify, they asked Dr Mazzola to drain some of the fluid from the site (using a fine needle) so that they could look and see if it was "puss" from a leaking abscess. Unfortunately, Dr Mazzola disagreed with their assessment and has declined to perform the procedure (yes, she apparently CAN do that).

The plan for the past week is that we go to Boston on Monday to consult with the radiation oncologist at the Dana-Farber Cancer Center regarding proton beam therapy. This trip has been put off multiple times now because of Cam's subsequent admissions (for the shunt placement and subsequent removal). They assured us all week that we would be home in time to make this weeks appointment. Based on that, we made plans and arrangements to drive up on Sunday morning as a family (novel concept, I know), spend the day in Boston sightseeing and relaxing a bit, going to see the Dr on Monday afternoon and come home on Monday afternoon/evening.

So, after the procedure could not/would not be done here, a call was placed to Dr Kieran in Boston. He has agreed to admit Cam into Boston Children's Hospital (BCH) on Monday after our meeting with him. The neurosurgery team will then review her case, have a look at Cam and decide what they would like to do. A couple of things could come out of this visit:

1) BEST CASE SCENARIO (we can hope, right?): We get to Boston, Dr Kieran looks at her, the fever is gone and he says go home and stay the course of antibiotics that she is on. Follow up here over the next several weeks and we come right home.

2) SCENARIO 2: We get to BCH, they look and AGREE with Dr Mazzola and do not biopsy it - we go home and stay the course of antibiotics that she is on. Follow up here over the next several weeks and come right home.

3) SCENARIO 3 - We get to BCH, the do a biopsy and it comes back clear. We go home and stay the course of antibiotics that she is on. Follow up here over the next several weeks and come right home.

4) SCENARIO 4 (WORST CASE): The biopsy comes back positive with infection from an abscess. If that is the case, they will need to insert a small tube into the site to drain fluid and also to be used to inject antibiotic directly into the site to clear up the infection. Because of the drain that would be external, she would have to remain in the hospital during the 10 - 14 day course of antibiotics. The admission and procedure would all take place in Boston. This would not necessarily mean that we would need to stay in Boston for the radiation as well, but definitely would be there for the 10 - 14 days that they were draining and treating the abscess.

Regardless of which scenario we end up with, it looks like we will be staying in Boston on Monday night. We are currently scheduled to be discharged from Morristown on Monday morning around 5:00am so that we can start our journey to Boston (in the middle of rush hour - nice of them, don't you think?). Our appointment with Dr Kieran is at 1:00pm and then we will head right over to BCH to be seen by that team.

We are relieved that they are sending us to a new objective set of eyes. At this point, Cam has spent 10 days on the admission in the hospital and is still running these fevers sporadically. Luckily, she is really acting like Cam. She laughed with Dr Porter this morning when he came in. Last night, her nurse gave Cam a brand new stethoscope to play with and keep as well as a syringe (no, not with the needle) to pretend with on her dolls. She ate all of her breakfast today and is really looking and acting like herself which is a tremendous relief.

We continue to hope and pray for her recovery so that she can move on to the next phase of treatment and put this all behind her very quickly.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell