Catching Up For The Holidays

It has been a long time since my last post, and a lot has happened during this time. I don't know exactly why I haven't written sooner. Partly I think that the frequent issues that Carly has had to deal with have been wearing me down some, and I was starting to feel like a broken record with my posts. That said, this blog is an important way to keep all of our loved ones up to date, and to keep Carly in the minds of so many. We also get a lot from the comments from all of you here and we have missed that. We are going to try a new phase of the blog and I will try to write more and post more photos, but also Christa will begin writing more often with updates on how Carly's weeks are going.

Now on to what people really want to know: How is Carly? I have described the last four months as hovering around mediocre, with some periods that were better and quite a few when it was worse. During the good periods Carly has been able to go to school, she is awake and interactive for most of her time there, and many of her classmates love to get to push her in her wheelchair during their outside time. She is full of smiles, eats well and as always she loves listening to music. We took Carly and Kempton on a 10 day trip to Kauai in October and she had her own bedroom with a big poster bed that had windows looking out to the ocean and beautiful gardens. Each day at sunrise birds would be singing outside her window and she would wake up smiling. That alone was worth the trip. The less good periods have been too frequent and typically Carly stops eating and drinking and she sleeps 20+ hours a day. Each time a shunt issue has been to blame.

Carly is now up to shunt 37, which she got earlier today. She had surgery for shunt 36 just last Friday and after a good day on Saturday she slowly got worse again over the week. Today Dr. Auguste found that something had been blocking the flow that likely got stuck there during the last surgery. She is resting well now and we were treated to a beautiful view of the Marin headlands when we got up to her hospital room today. It was one of the first sunny breaks in a long string of rain, and I am hoping that it is a sign that Carly has some sunny days ahead.

We should get home from the hospital tomorrow and we will get to spend Christmas Eve with Christa's family in Walnut Creek. If Carly is recovering well we hope to fly to Northern Michigan on Christmas day to spend some time with my family. We'll be keeping our fingers crossed that both of these things get to happen. I hope you all have a very Merry Christmas and a Happy New Year.

Love, Brad

Thirty Three

It has been a very long time since my last post, which this time has been a good sign for Carly.  Her most recent shunt lasted 10 weeks, which is a new record for Carly.  During these ten weeks she has done a lot of fun things, including going to her fourth High Sierra Music Festival and a recent trip to visit family and relax at Douglas Lake in Michigan.  The days were not all good for Carly, with some times when we thought a shunt surgery was just around the corner, but she would then pull out of that and follow it up with a few better days.  Consistently so-so is how I had been describing it, but that is a step in the right direction.

Over the last week the less good days were on the rise and we were certain that she would soon need to have a shunt surgery.  That day was today, and she headed into the OR around noon to get shunt # 33.  Dr. Gupta noted that it was clogged, but did not seem as extreme as past revisions.  Her protein levels have dropped a slowly and are now down to 207.  Dr. Gupta wants to see that get into the 100's, and at that point the expectation is that her shunt would be much less likely to clog.  She has her new shunt in place now and she is resting comfortably next to me in her hospital room.  We are hoping that this shunt will set yet another new record, and I will not wait for it to fail to make my next post.

Love, Brad

Pennies For Carly

Carly has been doing pretty well since her last surgery. It continues to take awhile for her to get back to her baseline after surgery, with a lot of trial and error to figure out how much we should be pumping her shunt. While this does make for a mix of good and less good parts of the day, the good parts are still more common. She recently got a new chair that supports her really well and makes it easy for us to take her around the house and involve her in our daily activities. This should be a great addition for us and will hopefully help encourage Carly to spend more and more time awake and interactive.

Recently we received one of the most touching and caring packages in the mail. A friend of ours, Julia, who is a teacher at Donald Hertz School P.S. 83 in the Bronx, NY spread the word about Carly and her fight against brain tumors. A teacher at the school, Connie Calabrese, and her community service club decided to choose Team Carly fundraising for the National Brain Tumor Society as their project. Through a program called Penny Harvest, this group raised $400 to help support the fight against brain tumors. The package they sent included letters and poems from the kids filled with love and support for Carly, as well as a picture of all of them holding a Team Carly sign they made. It was incredibly touching, and such a great example of how inspiring Carly is and how thoughtful and caring people can be. Carly, Christa and I want to thank Julia, Connie, Jesada, Giselle, Maria, Shylia, Vivian, Joshua, Ariella, Bibi, Chris, Jorge, Daniel, Elisaul and Bernadette and all who supported them from the bottom of our hearts. You helped brighten Carly's day, filled her with smiles and will help her to keep getting better each day.

Love, Brad

Thirty Two

Carly was having a lot of up and down moments, with the down moments getting more prevalent over the last week. Time for shunt 31 was clearly up, so Carly headed back to the OR yesterday afternoon.  Dr. Gupta found an obstruction in the peritoneal catheter this time, and he replaced all of the shunt hardware. The elevated protein levels that lead to build up in the shunt have been stable over the last month but still need to come down a bit to ensure the shunt will not become obstructed.  Carly recovered well and we had a nice, quiet room at the hospital last night.  She was discharged around noon today and is now fast asleep in her own bed here at home.  We are hoping that with all new shunt hardware, she has a long stretch of feeling good coming her way.

Love, Brad

A Good Cause

Wow, where did May go? Before I go into the Carly update I first wanted to thank everyone again for their support of the Bay Area Brain Tumor Walk. Team Carly raised $11,045 this year adding to the incredible efforts over the last four years. It was great seeing everyone out in Golden Gate Park, and we felt the support of all of you who couldn’t be there in person. The money that this event raises really is making a difference in research for a cure for brain tumors. A few weeks after the walk I had lunch with one of the directors from the National Brain Tumor Society and she told me a story of a recent drug trial at a biotech company in San Diego that was funded in part by NBTS. In this trial, which is still ongoing, they are finding success in treating a type of brain tumor (GBM) using oncolytic virus therapy. This concept uses live viruses to selectively infect and replicate in cancer cells, with minimal destruction to surrounding tissue. While the concept of using live viruses to infect and destroy tumors dates back to nearly over a century, advances in molecular biology and virology have accelerated development recently. Knowing that our fundraising is going directly to this type of work is very rewarding and shows how Carly (through all of you) is making a difference in brain tumor research!

The last few weeks have been very up and down for Carly. It took several days after the last surgery before she started to feel like herself, which isn’t too unusual these days. She then had several days where she was doing really well with some really productive therapy sessions. After a few of these good days she started to go downhill a bit and she still has not gotten back to feeling her best. By last Sunday her seizures had really increased and she had close to 20 that day which left us wondering if a shunt surgery was around the corner. Since Sunday her seizures have gone down a lot, and she has only had one today. We have been pumping the reservoir on her shunt more to force flow which may be making the difference, but it is a tricky balancing act between pumping too much and too little. Needless to say it is frustrating that she has to go through this, but it has been good to see her feeling a bit better over the course of this week. We’ll be keeping a close eye on her, as always, over the next few days to try to figure out what changes we should be making. Thanks for keeping her in your thoughts and prayers.

Love, Brad

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

Happy Birthday Carly!

Today our sweet little c turns 4. For most of that time she has been fighting hard, first against the tumor and now against a variety of complications that are keeping her from feeling her best. She is inspiring to us, and many others, and through it all she continues to bring the best out of people that know her.

More than anything I wanted her to have a normal birthday, feeling well enough to enjoy a few bites of cake and smile at the crinkling of some wrapping paper. Unfortunately, her most recent shunt has slowly started to become obstructed and yesterday it finally stopped working all together. Carly will be heading into the OR pretty soon today for a shunt revision to replace the faulty components once again. The good news is that the protein continues to get a little lower, and the other cell counts in her CSF are looking better than they have in a very long time. We are still hopeful that this could indicate that things are starting to heal, and soon she will have protein levels that stop interfering with the flow through the shunt. While it is not how any of us wanted her to spend her birthday, if she is nearing the end of this surgery cycle that is the best present we could ask for.

Love, Brad