Sleepless In San Francisco

The first eight hours after Carly’s shunt surgery went smoothly, but the rest of the weekend was a bit more eventful. Carly was very wired on Friday night in the hospital and we were all up for most of the night. Fortunately Dr. Gupta was comfortable with sending us home to recover on Saturday afternoon and we were all happy to be home. Carly continued to be unable to sleep all day Saturday and Sunday night, and she became increasingly uncomfortable into Sunday morning. We had basically accepted that we would need to go back to the hospital on Sunday, but after checking in with the neurosurgeon resident on Sunday we were told to see how things went over the next 24 hours.

It seemed like Carly was a lot more comfortable when laying flat, so we tried to keep her that way most of the day on Sunday which seemed to help. This could mean that Carly needs some time to adjust to the reduced intracranial pressure from the properly working shunt. By Sunday afternoon we were able to take a walk and enjoy the beautiful weather while keeping the stroller in the fully reclined position. Carly slept for the entire two hour walk after nearly 48 hours without sleep. After worrying about a return to the hospital earlier in the day, this walk was the best present Christa or I could ever have asked for. Carly continues to do a little better today, taking a few naps and throwing in a few cute smiles along the way. She is one amazing little girl, and hopefully she will continue to get the relief (and rest) that she deserves.

Love, Brad

Neuf Said

Carly's surgery went smoothly this morning, lasting about two hours. Dr. Auguste said that there was a lot of sludge in the catheter that was blocking the flow of the shunt. He also told us that Carly clearly had increased cranial pressure and he drained some CSF to give additional relief. Carly woke from anesthesia quickly and was ready to eat in less than an hour which is much faster than usual. She has also smiled several times already, something that she rarely does in the hospital. She has some sore spots from the incisions on her head and her belly that are clearly bothering her but that should subside in a few days. Thanks for the love and prayers, they helped keep Carly safe though another trip to the OR.

Love,

Brad

Number Nine

Late last week we had a few concerns that Carly's shunt may not be functioning.  On Friday and Saturday Carly’s symptoms worsened, and after contacting the neurosurgeon on call we decided that she needed to have a shunt function study on Monday. During the study the images on the monitor tracking the radioactive isotopes that were injected into the shunt barely moved. This verified, as we had expected, that Carly’s shunt is clogged and not working properly. We knew this was a possibility when her cerebral spinal fluid protein content was very elevated over a month ago, and shunt number eight is on the way out.

Fortunately Carly has been feeling pretty good since Sunday and she has been looking around a lot and sharing some of her adorable smiles. She is scheduled for surgery to replace the shunt this Friday morning, and we can always bring her in sooner if she starts feeling worse. The most promising part of this is that Carly is able to do as well as she is without a properly functioning shunt. This could be an indictor that she may eventually be able to live shunt free, but only time will tell.

Love, Brad

Strawberry Shortcake

Things have been pretty quiet this week, which is a good thing. Carly has days when she is pretty awake for many hours and some days when she sleeps most of the day, but the trend is heading in the right direction.  She is also smiling more and is very attentive to sounds often smiling for some sound off in the distance that Christa and I wouldn’t have even noticed otherwise. Her hematology check this week was very good, showing a healthy amount of red blood cells, white blood cells and platelets. The Hemotology-Oncology resident said that it looks like Carly is out of the woods for this issue, and she won’t need her blood levels tested again for another month.

Love, Brad

Love To All The Moms Out There

Things have been steady for Carly this past week, which is another step in the right direction.  The biggest news is that her platelets went up for the first time in many weeks, a clear sign that her bone marrow is making a recovery. She will most likely be able to avoid another transfusion and she can now wait a week before another check on her blood cell levels. With the bone marrow issue stabilized Carly was allowed to begin her growth hormone replacement on Thursday. The first week is at a half dose, with full dosing staring next Thursday.  It does add a second shot to her daily routine, but we are hopeful that this will help aid her recovery in a big way.

Mother’s day is a time for all of us to thank the moms in our lives for all that they have done for those around them. I am incredibly thankful for my mom, who raised me right and continues to provide loving support for everyone in the family. I am also sending a special mothers day prayer to my grandmother, grammy, who passed away just over a month ago. She set the example for strength, and unconditional love for all of us and I know she is smiling down on us all today. And then there is my wife and Carly’s mom, Christa, who I continue to be amazed by everyday. The love, caring and strength that she simply glows with as she guides Carly on her healing journey is beyond words. My mom sent Christa an email recently that I think sums it up best. My mom received a letter with this description of a certain type of woman that she thought described Christa:

“We all know at least one woman who seems to be clothed with peace and grace. She stands out in a crowd. She’s a woman who has endured hardship but hasn’t become hard; has had her world shaken, but remains unshakeable. Every wave of difficulty that has washed over her has polished and revealed in her that something special that we all want. Such women are rare, but God placed just enough around to salt the earth with them and make the rest of us thirsty.”

I couldn’t agree more.

Love, Brad

What A Team

The Brain Tumor Walk was a big success this weekend, and Team Carly was a major contributor. The weather was perfect, with clear skies and a slight ocean breeze that must have been a little wind power from those of you who were not there in person. Thanks to all of you, Team Carly raised $14,595 which easily beat our goal of $12,000 and placed Team Carly in the top five of all teams. It is hard to put into words just how moved we are by the support that we have received for this event and throughout this journey that we find ourselves on. Looking at the list of over 200 people who contributed to Team Carly we see friends both new and old, family from around the county, coworkers, and even some generous anonymous supporters and we cannot help but feel blessed to have so many people lifting up our daughter in love and prayers. Thank you all.

Love, Brad and Christa