Sunday, April 29, 2012

Grateful For The Support

First, I want to thank everyone that has supported the Team Carly brain tumor walk team. We have raised close to $7,000 this year and over $30,000 over the last few years between east coast and west coast walking teams. That is truly inspirational. If you are planning to join the team as a walker and haven’t gotten to it yet, today is the last day for online walk registrations. You can still register at the walk itself, and donations to Team Carly can be made online up to the walk day next weekend (and even a few days after.)

Carly had a tough few days last week. She woke up uncomfortable several mornings, and on Thursday afternoon she was so uncomfortable that she couldn’t stop crying for several hours. After a sleepless night when she continued to be uncomfortable and inconsolable, we packed our hospital suitcase and headed up for what we thought would be several days in the hospital. Hoping to avoid that if at all possible we got in touch with Caroline, the nurse practitioner for neurosurgery, to see if we could investigate in the clinic rather than the ER. As she has many times before, Caroline came to the rescue again and helped right away with a shunt tap to eliminate a shunt infection as the problem. These initial results looked good, so the next thing we needed to investigate was a lung infection. Dr. Uba, Carly’s pediatrician was quick to order a chest x-ray and after only an hour of waiting at home he phoned to let us know that she had pneumonia and that she should start a course of antibiotics. She is doing significantly better now, although still tired. I am just amazed at her improvement and that we were able to avoid another admission to the hospital. We are very thankful for Caroline, Dr. Uba, our close proximity to UCSF and as always Team Carly!

Love, Brad

Tuesday, April 17, 2012


We knew the shunt was starting to show signs of clogging and when Carly went in to see neurosurgery on Monday to investigate, they agreed that it was not working as it should. After checking Dr. Gupta's schedule, today was the best option for surgery to replace it. Carly headed into the OR around 2:45 this afternoon and Dr. Gupta replaced most of the shunt components. This shunt lasted for five and a half weeks which is an improvement over many of the previous 29 shunts. The most encouraging news is that Dr. Gupta reported that Carly's CSF looked as clear and healthy as it has in the last few years, looking more like water (as it should) and less like peach Snapple (as it was described by Dr. Auguste after another shunt revision.) Carly is resting in her hospital bed next to me now, and she should be back home early in the day tomorrow. Christa and I commented about how good it felt to have a stretch of five and a half weeks out of the hospital, and we can't wait to top that record soon.

Love, Brad

Sunday, April 15, 2012

Tumor Walk Time

We have all been adjusting to life back at home after an amazing trip together. (Here is a link to trip photos.) In the end we drove over 2,800 miles, with some great stops all along the way. Carly did great for the majority of the trip, and we were thrilled that she made it all three weeks without an issue that would force us to fly home early. She has continued to have a few seizures each day, so after our return we increased her seizure medication which seems to have helped a bit but the seizures have not completely stopped. Carly is also showing a few other signs that this shunt may be starting to become obstructed, so it is possible that a malfunctioning shunt could be contributing to her seizures. As usual, time will tell and we will keep a close eye on Carly's symptoms this week to determine if she will need a shunt revision.

With May quickly approaching it is nearing time for that annual Bay Area Brain Tumor Walk.  We will be walking in Golden Gate Park on May 5 to raise money for brain tumor research.  Team Carly raised over $14,000 last year, with support from all over the world. It is amazing to have that type of support, and it helps fund such important work. There are researchers out there that may be closing in on new treatment options, but their work relies on funding from groups like the National Brain Tumor Society.  I am hopeful that the day will come that a family given a diagnosis like we were will have treatment options that are fast, painless and without side effects or long term damage.  Please join us at the walk if you are in the San Francisco area, or donate to Team Carly to help make that a reality. Click here to learn more.

Thanks for your love and support!

Love, Brad