Thirty One

It was a busy week and I didn't get a chance to post a picture from the walk and thank everyone for their support. It was a beautiful day and very inspirational to see so many people out for this important cause. I'll post more on that soon.

Carly has been showing signs of shunt failure for awhile now but we were able to put off surgery for almost a week. She was doing pretty well and had a particularly good therapy session on Wednesday but that took a quick turn last night, when she woke up around 2am in a lot of pain. She was hard to settle down for the next four hours and it was clear that the shunt was to blame. We called neurosurgery and surgery was scheduled for 2pm. Dr. Gupta found a clog in the ventricular catheter which he replaced. Carly has had a smooth recovery so far and she got a nice room overlooking the Marin headlands and Golden Gate Bridge which is a nice change from our last few visits. She is resting next to me now as we listen to some music on her travel speakers, and I expect she will be discharged and sent home tomorrow morning.

Love, Brad

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

Thirty

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

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

Road Trip

Carly’s recovery from her last shunt surgery has been going well, so we hit the road early last week for our road trip along the Gulf of Mexico. Carly did great for the five hour flight to Miami and Kemp did really well too. After a few days at Miami Beach we headed south to the keys and then up the gulf coast to near Sarasota, FL on Longboat Key. We are visiting my parents and overlapped with my brother and his family for one day so Carly and Kemp were able to spend time with their Milwaukee cousins. Carly had her first taste of key lime pie which was a big hit, and she seems really relaxed when she is lounging on a beach chair under an umbrella looking out over the Gulf. Overall she has had many good moments, mixed with some where she is not feeling as great. Over the last day or two she has been more sleepy and not feeling her best. Her seizures have not dissipated and it is hard to know if that is shunt related or if we need to increase her dose of seizure medication. We are hoping that the seizures will stabilize on their own over the next week and that Carly will be feeling better and better as we make our way toward Santa Fe, NM (our final destination before flying home.) It is great getting to spend this much time together as a family, and I’ll be sure to start posting pictures of the day if you’d like to see what Carly is up to. Some more pictures from the trip are posted here: Road Trip Photo Album

Love,

Brad

Twenty Nine

Carly had been giving us signs that her shunt was not working quite right, and it became clear that she was in need of a revision. Today at 3pm we headed up to UCSF and just before five she headed into the OR. From her symptoms over the last few weeks we expected that the catheter going from the valve to her belly was partially obstructed and that is what Dr. Gupta found during the surgery. He replaced that catheter as well as the valve and she was out of the OR around 6:30. Dr. Gupta commented on how much better the CSF looks, being much more clear than it has been in a very long time. A tap earlier in the week showed that the protein has dropped to near 300, which is why it is finally starting to look more typical. At this protein level Carly is getting close to the point when the shunts should be able to work as designed, and hopefully obstructions will soon be a thing of the past. Carly was a bit uncomfortable just after surgery but she is doing better now and is resting peacefully. We should be discharged tomorrow morning, and will hopefully still be starting our road trip early next week. Thanks for sending love our way, it is always a big help for all of us.

Love, Brad

Catching Up

We have hit a great milestone today, with it being exactly 4 weeks since Carly got shunt #28. Given the one to two weeks between revisions pattern that she had been in, getting to 4 weeks is a great turn in the right direction. For the first few weeks since the revision Carly was doing really well, with a three day run that was the best we have seen in many months. Over the last two weeks she has had more ups and downs with an increase in seizures and periods in the day where she is clearly not feeling well. It is difficult to know if this is a sign of the shunt starting to malfunction, or if it is in any way related to the amount of times that we pump the shunt each day to force some flow through it. We continually try to monitor how Carly looks and adjust the amount and frequency of the pumping. If she doesn’t show any big improvements this week we will probably have neurosurgery tap the shunt to help us figure things out.

If Carly is doing well we plan to take her, and Kempton, on a road trip starting in Miami and traveling along the gulf coast. When Carly was born we took her on a welcome tour of the southwest United States so it felt fitting to have a welcome tour for Kempton in the southeast. We have flights booked for Tuesday the 13th, and we are hoping that we feel comfortable enough with the shunt situation to travel that far from home. We will keep you posted and will send updates and photos from the road when the road trip gets underway.

The other great news is that Carly’s most recent MRI did not show any signs of tumor. The recurrent tumor that was treated with gamma knife radiation in June is now undetectable. Carly will continue to have an MRI every three months for monitoring, but things are looking great now. Thanks for the love and support as Carly moves forward on her road to recovery.


Love, Brad

Super Shunt Sunday

It is pretty clear that having a second child takes more time from your day, and it hasn't helped me in keeping up with Carly's blog posts. I am hoping to do better though. 

Carly was doing pretty well and pumping the shunt reservoir seemed to be helping. Her days were mixed at times, with periods full of smiles and other times when you could tell something was off. These off periods could be from pumping too much, or not enough, so there has been a lot of trial and error. Three weeks passed for shunt 27, and it was still going strong. Early Saturday morning I went to pump the shunt and the reservoir didn't refill after the first pump. Not refilling means that something is blocking the flow, and we knew then that surgery wasn't far away.

By this morning Carly was not feeling well, and we came up to the ER. After a seven hour wait, the OR was finally free and Carly headed in for shunt #28. Both Dr. Gupta and Dr. Auguste were off for the weekend, so Dr. Sun from Oakland Children's handled the procedure. He found an obvious clog in the ventricular catheter, which he replaced. Carly is resting now in her room on the sixth floor and we expect she will be heading home tomorrow. It wasn't the Super Bowl party we had been planning for, but hopefully Carly's new hardware can last as long as the grin on Eli Manning's face. 

Love, Brad