Twenty Six

The lump of coal in this years stocking was another shunt revision for Carly. She wasn't feeling great the last few days and she had a particularly bad night last night. Much to our dismay, it was clear that the shunt was not working properly. We headed to the emergency room around 9am and spent much of the day there. At 5pm the operating room opened up and Dr. Auguste performed the revision. He found an obstruction in the ventricular catheter that was just enough to block off the flow. He replaced this catheter and Carly is now resting peacefully in her room. One promising piece of news is that the inflammatory markers continue to be low, and the protein levels have dropped by 20% in the last week. The protein is still very high and not yet to the sweet spot for not clogging but it is headed in the right direction.

Love, Brad

Holiday Shunt

We continued to pump Carly's shunt regularly to keep it flowing, but a few days ago the reservoir stopped refilling meaning there was a complete blockage. Carly had not been feeling very good for several weeks so we knew a surgery was not far off, and today was the day. Carly headed back to the OR at 10am today for her 25th shunt revision.  Dr. Gupta replaced all of the shunt components and he said that there was an obvious clog in the ventricular catheter. He said that the other components did not look quite as bad as they typically do which could mean that things are improving. 

The protein levels are still high, at 660 when 50 is normal, but they have been stable or coming down a little and it is a long way from 1700 where it was at one point. There is a cell type that is an indicator of inflammation and this has dropped from 20% of the total to 1%. This is a major improvement and hopefully an indicator that the problem that has caused inflammation and high protein may be starting to resolve. Only time will tell, but it is all that we want for Christmas. Speaking of Christmas, it only seems fitting that shunt 25 falls on this week. The Christmas shunt of 2011 will hopefully be what Carly needs to get back to her smiling self for a Happy New Year.

Love, Brad

Big Sister

Carly has been having a mix of  good days and bad days over the last week. Her new shunt is not flowing as well as it should due to her high CSF protein and we can tell that her internal cranial pressure is getting higher. The most recent shunt has a large reservoir that is a silicone half sphere under her skin. By depressing the reservoir we can force flow through the shunt and help keep things flowing. This seemed to be helping, but over the last few days she has become more and more tired. We had neurosurgery tap the shunt this afternoon to remove a decent volume of fluid to help with the elevated pressure. Our hope is that this, along with pumping the shunt more frequently, will help get some more longevity out of this shunt. We will see how she does over the next few days and we are hoping for some good flow.

The big news is that Carly is now a big sister. Her new little brother was born at 5:37am, weighing in at 9 lbs 15 oz. Kempton Tyler Nelson gets his first name from Christa's grandfather Kempton "Mac" McCarthy and his middle name from our dearly missed friend Tyler Palmer. Christa said she wanted the names to come from truly good men, and both of these men definitely fit that description. Kemp and Christa are both doing well and we are expecting to head home tomorrow. We are very thankful for our families who are taking care of Carly at home while we are up here at the hospital. 

Love, Brad

Two Dozen

Shunt 23 was not the one. Only six days since her last surgery, Carly was back in the OR today for another shunt revision. We started noticing symptoms of a shunt failure as we headed into last weekend but we were really hoping that it was simply a slow recovery from surgery. It became clear this wasn't the case yesterday and we needed to have neurosurgery tap the shunt and remove some fluid to help Carly be comfortable through the night. Today Dr. Gupta found that the valve, despite its German engineering, was obstructed as was the peritoneal catheter. He replaced the entire system again, using the custom aluminum ventricular catheter with a new valve type that Carly hasn't had before. This cycle that Carly has been stuck in is a real test of our patience and faith, but we will never stop envisioning her feeling great and reaching her full potential and Team Carly will not be deterred.

Love, Brad

Custom Made

Carly had a tough night on Tuesday and clearly needed to have surgery yesterday. She went into the OR around 4 yesterday afternoon, and everything went smoothly. The procedure took two hours and Dr. Gupta was able to replace all of the old hardware with Carly's new custom setup. She rested well overnight, with her biggest problem being a really sore throat from intubation that made it hurt for her to swallow. The sore throat has improved this morning and Carly is eating well now. She will be discharged soon and we'll be heading home, hopefully for a record setting run with shunt 23.

Love, Brad

Blocked Up

While we were ready for a long calm period, the shunt roller coaster continues. Carly had a good period after her last surgery, but then over the last week or two we could see that things were changing. We were hoping that it was something that would pass, but it is very clear now that shunt number 22 is obstructed and on the way out. Neurosurgery tapped the shunt yesterday which offered some relief, and they sent the CSF for the usual testing. The protein levels have some back up, but still not to the all time high points of the past so there is a chance that the protein is slowly coming down.

For the next revision Dr. Gupta is going to try a few new things, as the current system is clearly not working for Carly. He had a custom ventricular catheter fashioned out of aluminum, rather than the typical silicone tubing, as it is inert. In the chance that the high protein is related to an allergic reaction to silicone, this could help bring it back to normal levels. I also tracked down a German shunt manufacturer that makes a valve out of titanium, with slightly larger flow paths, that could potentially help keep the flow up. These have been special ordered to UCSF and Dr. Gupta will use this along with the new aluminum catheter. We are hoping that this new system will help break the cycle that Carly has been dealing with for quite awhile now. Surgery time isn't set yet but it may be as early as tomorrow afternoon, or possibly Thursday. We'll keep you posted and are thankful for all of the love and support for little c.

Love, Brad

Sigh Of Relief

Just after 1pm this afternoon Carly was discharged and we all finally walked out of the hospital doors together. Carly was full of smiles as soon as we got home, and she is resting peacefully in her own bed now. You would think that I wouldn't be surprised by how incredibly strong our little girl is after all she has been through, but still she never ceases to amaze me. She is so special, and we hope that a long stretch of good luck is coming her way.

Love, Brad

Deuce Deuce

Carly headed into the OR for the third time of this admission around 1:30 pm.  Dr. Gupta removed the EVD system and placed a new shunt, number 22. He made a few adjustments to the inlet holes in the catheter hoping that this might help keep it flowing. We are back in our room now and Carly is already eating well and smiling. We are hoping for a quiet night and we should be heading home tomorrow. Now all we can do is hope that it keeps flowing.

Love, Brad

Getting There

Carly's brain washing system continues to work well and she felt pretty good today. Her CSF protein levels are low, but it will be hard to know how long that will last until we stop the infusions and see what happens when her ventricles are left to their own devices. Tomorrow around noon Carly will have surgery to remove the EVD's and replace her old shunt with a new one.  With a new shunt in place we will most likely just have one night left in the hospital before we get to head home.  After eleven nights in the PICU, we are all ready for life on the outside again.

Love, Brad

Making Headway

Carly had a good day today and her custom EVD system is working well. It is holding up to the high flow irrigation, which is allowing the high protein CSF to be washed out. The protein continues to be produced, but the hope is that the steroid infusions will reduce inflammation and in turn bring down the protein levels. The treatment will continue for another day, and Carly is tentatively scheduled to have a shunt revision surgery on Friday afternoon. If we can keep to that schedule we would likely be able to go home on Saturday. We won't get ahead of ourselves and we'll continue take each day one moment at a time, but there is no denying that it will feel great to get home.

Love,  Brad.   

Brainwash

There was a technical difficulty and last night's post was left out:
It was another sleepless night up here on the hill as we dealt with continuing issues with Carly's EVD's. By morning she was feeling more comfortable though, and her day was much better and she continues to feel pretty good now. We spoke with Dr. Gupta early this afternoon and he is also frustrated that things have not gone as smoothly as hoped. We do have a plan for the next steps though, and it is good to have something to put into action.

Because Carly's EVDs clogged so easily, Dr. Gupta wants to try something with a larger inner diameter to help keep the flow going. They don't have any traditional EVD's that are larger so he plans to use either a feeding tube or another type of tube that is unconventional for this type of use. Seeing that Carly is anything but conventional this makes perfect sense. After he places the new EVD, they will infuse with steroids twice a day in an attempt to decrease the ventricular inflammation. This is another uncommon practice, but hopefully it does the trick for our little c. We're feeling the power of Team Carly, thanks!

And here is tonight's post:
Carly went into the OR this morning to replace her EVD's.  The procedure lasted about two hours and it went smoothly. As expected, she now has a very non-conventional setup that includes a feeding tube sutured to an angiocatheter, taped to a tongue depressor. I kid you not! It may look unusual but it is working really well so far. Carly is on a 12 hour cycle where they flush normal saline through the catheters for an hour, inject steroids into her ventricles and clamp the flow for five hours, and then allow it to flow freely for six hours. They will keep this up for the next few days, and hopefully it will bring the protein down and help reduce her ventricular inflammation. We feel like we can see the light at the end of the tunnel for this hospital stay, and maybe a little sleep is just around the bend.

Love, Brad   

Up And Down

Carly's clogged EVD's continue to be difficult to manage. Because they are not flowing freely, each hour the nurses have to force flow and estimate how much CSF to remove. As it is an estimate it is easy to take too much or too little, and over several hours this can add up and leave Carly with internal cranial pressures that are either too high or too low. Earlier today her pressure was too high, and now it may be a bit too low, neither of which feels very good. Fortunately Carly did have several good hours today peppered with smiles and visits from some friends. The plan for the next steps is dependent on some lab results that we should know tomorrow. Thanks for keeping Carly in your thoughts and prayers.

Love, Brad

Plumbing Problems

Today was pretty challenging with Carly's EVD's continuing to have obstruction issues. Neurosurgery had to come by to flush about 8 times in the night, and nearly every hour during the day. Even with the flushing, the EVD's did not function very well so the pressure in Carly's head was continually changing throughout the day was not comfortable for her at times. They have discontinued the irrigation for the night and Carly seems pretty comfortable so hopefully she has a good night's sleep. Neurosurgery will check the protein level in her CSF in the morning, and use that information to help decide what the next steps should be. Thanks for keeping Carly, Christa and I in your thoughts, we can feel the support and it makes a big difference.

Love, Brad

Cloggin' Up

Carly had a more restful night last night, needing some consoling but having some longer stretches when we all got some rest. The biggest challenge today is continuing to deal with clogging issues with her EVD. It shouldn't come as a big surprise, but the protein that has been perpetually clogging her shunts is now clogging her EVD. She is now hooked up to an irrigation system that is pumping fluid into one EVD and draining back out another, in hope that this will help dilute the CSF and clear her ventricles. She is still clogging pretty quickly, but so far the clogs can be cleared with a little intervention every thirty minutes. They plan to keep that up overnight and hopefully it will start to flow more freely on its own.

Love, Brad

Two Quakes and a Faulty Drain

Carly's second night was not as restful as night one. As bedtime approached we could tell that she was feeling irritated, and this continued through the night. It is something we have seen before, Carly rocks her head and moves her hand around a lot and to keep her from crying you need to hold her hand and pat her side. We had to keep this up constantly through the night and in the end we all got about an hour of sleep total.

Carly was more comfortable early today, but in the late afternoon she started to get agitated again. Around five this evening CSF started to leak out of the incision near the EVD, something that isn't supposed to happen. The neurosurgery resident came by and was able to get CSF to flow through the EVD again, but it seems like it might have a partial clog. We are keeping our eye on it overnight, and hopefully it was a one time incident. Carly is still needing tending now to be comfortable, but hopefully she can get more comfortable soon so we can all get some rest.

Love, Brad

One Down

Carly had an uneventful day, which is exactly what you want when you are in the PICU.  She slept well last night and today she shared some smiles, ate well, and rested. Today they just wanted to let the EVD drain for some time and tomorrow they will send off some of the CSF for additional tests.  We are hoping that another uneventful day lies ahead.

Love, Brad

Drain

Carly's surgery went smoothly today and she is now resting in the PICU.  It took just under 3 hours for the entire procedure, with the biopsy taking the most time.  Because of the protein and debris in Carly's CSF it wasn't easy for Dr. Gupta to look around with the scope, so he had to spend some time irrigating with saline. Nothing stood out in the initial results, and there was no obvious sign of tumor which is great news.

We will now spend the week in the PICU with the external drain in place.  They are going to monitor the protein levels and CSF production, and run a few tests each day to see if that can shed some light on the perpetual shunt clogging issues. The drain is a bit cumbersome because anytime we want to move Carly we must first close it, then move Carly, then realign the collection bag with the center of Carly's head using a laser pointer, then open the drain back up again.  It takes 2-3 people to make this happen, but she is a trooper and is more than happy to deal with that to get snuggled.

Love, Brad

A New Approach

On Friday Carly was still not feeling great, so neurosurgery adjusted the shunt again and also tapped it to remove CSF to hopefully help relieve some pressure on Carly's brain.  These two things helped and Carly did well over the weekend and we all had a few good nights sleep, but we could also tell that she was not feeling like herself. Today it seems like she is heading downhill a bit, so tomorrow we are going for a different approach and will try something we have been discussing with Dr. Gupta for the last few months.

To investigate the cause of the high CSF protein and ventricular inflamation that has been plaguing Carly for so long, Dr. Gupta is going to do a small biopsy of the ventricular wall and place an external ventricular drain (EVD) tomorrow around noon.  He is hoping that the biopsy might provide some indication to the cause of the issue and help direct a new treatment option. The EVD allows them to closely monitor Carly's spinal fluid and provides access to flush the area and hopefully allow it to clear up and heal. While the EVD is in place Carly will have to be in the intensive care unit and it will be challenging to move her around, but hopefully it will help break this cycle she is stuck in.  We expect that she could be in the PICU for a week, or possibly a bit longer, but we won't really know until the biopsy results are in.  Please keep Carly in your thoughts and prayers and we all hope this will be a short and productive stay in the hospital.

Love, Brad

Let It Flow

Carly was discharged early Monday afternoon and she was clearly happy to be home.  Unfortunately over the last few days she has started to feel worse, leaving us wondering if it could be the shunt malfunctioning already or if it is something else with very similar symptoms.  By this afternoon all of the typical high pressure symptoms came back in force, so we needed to do something about it.  Christa took Carly up to see neurosurgery to have the shunt adjusted to flow more easily. As they checked the setting they found that it was between settings which could have caused some issues, so it was changed to the setting we initially requested.  The hope is that this will relieve Carly's high pressure symptoms, but we can always lower the setting tomorrow if it doesn't do the trick.  So far this evening she is not really doing better, so it is looking like we will need to adjust the shunt tomorrow and hope that helps. Keep thinking the good shunt thoughts, I know we are!

Love, Brad

Blackjack

Carly's shunt was clearly on the way out near the end of the week, so she had a scheduled surgery set for this Tuesday. To help her make it through the weekend Neurosurgery tapped the shunt and took off 40 ml of fluid to help relieve the pressure. This made Carly feel a lot better, but the effects only lasted about 24 hours. She had a tough night last night and this morning it was clear that the shunt would wait no longer. Dr. Gupta brought her into the OR at 2pm and replaced all of the shunt hardware yet again. The surgery went smoothly, and Carly has had a great recovery so far. We have a quiet room to ourselves and she is eating now as we listen to some of our favorite music. We are hoping that we can all get some rest here tonight, if all goes well we will be heading home tomorrow. Hopefully 21 is Carly's lucky number. Love, Brad

A Mixed Month

The last few weeks have been a mixed bag for Carly.  After her shunt surgery she had an unsettled period as she recovered, but soon that led to some good days.  She was due for an MRI checkup to monitor her tumor, but as that day approached she had a respiratory issue that made the anesthesia team want to wait a few weeks for it to clear up.  As a precaution we asked for a chest X-ray to make sure everything looked ok, and sure enough Carly had another round of pneumonia.  It looked pretty serious on the film and they wanted Carly to stay overnight in the hospital, but with Christa's urging they were convinced to let us go home to observe her there while she started a long course of antibiotics.  After a few days she was doing much better, and our pediatrician thanked Christa for standing her ground, as that turned out to be the best thing for Carly.

Later in the month my parents came out to San Francisco for a visit and we all stayed at a beautiful house in Sausalito for a week.   Part way through the week Carly had one of the best days we have seen in months. She was all smiles, babbling, and interacting with anyone that would play with her which was great to see. As the week went on she began to become more restless during the night, and our sleep was interrupted a few times each night.  This has continued for most of the last week, and it is beginning to look like Carly's shunt may be having some problems.  We will see how she does this week, and neurosurgery will tap the shunt tomorrow to evaluate the protein level in her CSF and see if the tap makes her feel a bit better.

The best news recently came late last week.  Carly's MRI finally happened on Thursday and on Friday we got the results.  The tumor has shrunk to almost half its size since the last scan, so it is looking like the gamma knife treatment is working.  It can take up to a year for the full effect of gamma knife to occur and Carly's doctors are encouraged that the tumor is responding this well early on.  We're keeping focused on this great news, and the good days that Carly has had, and hoping that these good days will become more and more frequent in the coming weeks.

Love,

Brad

Recoup

Carly's recovery started a bit slow, but she was feeling well enough to be discharged just before noon today.  It was a big help that all of the staff at UCSF knows us well and we live close to the hospital, otherwise they may have wanted to observe her a bit longer.  When Carly got home she was already back to smiling and she had a good afternoon.  She is now sleeping peacefully in her own bed, and hopefully having some sweet dreams.  The love from Team Carly is a big help for us all, as always.

Love,

Brad

Twenty

Carly went in for surgery at noon today, and they finished up just after two. Everything went smoothly, and Dr. Gupta found clogs in both of the catheters so he replaced all of the shunt hardware. The high protein in her CSF is still the culprit, as it has been for most of the shunts, but it has come down a bit over the last few months and we are hoping that trend continues. Carly is feeling sore, but she did just finish a bottle and is resting now. She has a lot of neighbors separated only by curtains, so hopefully everyone is feeling good through the night. We expect to be heading home sometime tomorrow morning.  Love,  Brad

Deja vu

Carly's symptoms didn't improve, and she hasn't really felt good for almost three weeks now.  For awhile it did not seem like a shunt issue, but as we headed into the weekend we were fairly certain that the shunt was to blame.  With it being a holiday weekend, both Dr. Gupta and Dr. Auguste were out of town so we were hoping to make it to Tuesday without Carly needing surgery.  On Saturday Carly was feeling terrible, so we went to the emergency room and the neurosurgery resident tapped the shunt and took off some fluid to relieve the pressure.  Within an hour Carly was felling a lot better, it was like night and day.  It was a big relief to see her feeling better, and to know that the shunt was at least a part of the problem.

While we were happy to see her feeling better, we also knew that taps only provide temporary relief so we here hoping that she would make it Tuesday or Wednesday.  Thankfully, she made it through the rest of the weekend without getting too bad, and she is now scheduled to head to the OR tomorrow around 11am to get shunt #20. We'll be visualizing another successful surgery, and hoping that this shunt wil last longer then the rest.  Thanks for keeping her in your thoughts.

Love, Brad

Under The Weather

Carly's school started back up last week and her teacher and aides were happy to see her, but she was clearly not feeling that great. She was very tired and slept through most of the day, but she did share a few of her cute smiles with her aide Cece.  By the end of the week Carly needed to stay home, as she was feeling increasingly bad.

We tried a shunt adjustment going into the weekend to see if that was the problem, but that didn't do the trick.  Over the weekend Carly continued to feel sick and sleepy, and while the symptoms seem a bit like a faulty shunt it is not quite the same.  Caroline, the nurse practitioner for the neurosurgery team, said that it is not uncommon for patients to start to show a range symptoms due to inflammation from radiation around 3 months after gamma knife treatment. The symptoms vary greatly and depend on the areas of the brain that were adjacent to the radiation.  Carly is now 11 weeks out from her gamma knife treatment, so it is possible this is why she isn't feeling good.  We will see how she does over the next few days, and keep our fingers crossed that she starts feeling a lot better soon.  Thanks for keeping her in your thoughts and prayers.

Love, Brad

Quick Exit

Carly rested well through the night, and the stars must have been aligned because we managed to get discharged from the hospital before 8am this morning. This was a first, and it wouldn't have been possible if Carly wasn't such a strong girl. As we got home and put her in her bed for a nap, I realized that only 30 hours earlier we were waking up in the middle of the night with Carly feeling terrible due to a clogged shunt. It is amazing to see how much better she can feel in such a short amount of time, and it is a tribute to Dr. Auguste for putting the plan for surgery to action so quickly after we called the neurosurgery pager.  Getting to spend the afternoon enjoying the sun in Sausalito was a big improvement over Saturday and a great way to end the whirlwind weekend.

Love, Brad

Nineteen

Over the last three weeks, Carly's shunt has shown intermittent signs of clogging. Unlike most times in the past, there were several moments when we thought a shunt surgery was just days away only to have Carly pull out of it with good days. This was a great surprise each time, but last night the symptoms of a shunt failure continued to intensify and a surgery was clearly on the way. We phoned neurosurgery in the morning and Dr. Auguste had Carly in the operating room by 2pm. The shunt was clearly clogged in a few places, and these parts were replaced. Carly is recovering well so far, and she has even cracked a few little smiles. We are listening to some bedtime tunes, and hopefully we will all get some good rest. I expect we will be able to go home tomorrow, and we are hopeful that shunt #19 will continue the trend of longer lasting shunts.

Love, Brad

Turn It Down A Notch

As you all probably know by now, no news tends to be good news around here.  Carly had her usual quick recovery from her last shunt surgery, in fact it was quick enough that she was up in Qunicy, CA at the High Sierra Music Festival only 24 hours after she was discharged from the hospital.  The festival was great for all of us and Carly seems to like all of the live music. Over the last week she started to have more fussy periods, and we were all awake on and off through the night. As this increased it still did not look exactly like previous shunt malfunctions so we were hoping for the best.  Yesterday Christa took Carly up to UCSF to have the shunt adjusted to a lower pressure setting.  This is a painless one minute process that simply takes the turn of a strong magnet against her skin where the shunt valve sits.  Within thirty minutes Carly was clearly a lot more comfortable and we all slept through the night last night. She had a good day again today and is sleeping now, so hopefully this shunt setting is just what she needed.

Love, Brad

Eighteen

Carly is out of surgery now, with shunt number eighteen in place. The surgery went smoothly and Dr. Gupta said that the valve was visibly clogged again this time. With this valve lasting even less time than the previous type he decided to go back to the original valve. The team will be discussing the options for trying to lower the protein levels in her CSF which continually clog her shunts. Hopefully we find some solution soon.

Love, Brad

Back Too Soon

Shunt seventeen didn't turn out to be the one. After only two weeks it is not functioning properly and needs to be replaced. We spent last night in the hospital and Carly is heading into the operating room in the next hour or so for surgery. They will wait to see which parts aren't working to decide what type of hardware to use this time around. Hopefully whatever is used can last longer than this one did.

Love, Brad

East Side

Wow.  I have always known that Team Carly was an amazing group, and this weekend was more proof. On Saturday Team Carly East gathered for the New York City brain tumor walk.  Eighteen orange wristband clad friends made their way around Governers Island and we could feel the love coming from them all day long.  Team Carly East raised $3,170 for brain tumor research bringing the Team Carly total to $17,151! Thank you all so much, words really can't express how much we appreciate the support.

Carly has been feeling pretty good since her shunt surgery.  She has had some long periods of being awake and has been using her hands a lot, sticking them in her mouth more than I have seen in a long time. Over the weekend Christa spent a few nights away with friends and I got to spend my first solo nights with Carly. We had a great time together, and I couldn't think of a better way to celebrate father's day than with my sweet little angel.

Love,  Brad

Out Again

Carly's recovery from surgery is going well and she is feeling much better than yesterday. She was already back to smiling this morning and she was discharged from the hospital in the afternoon. I think she has set the record for quickest discharge from UCSF after a shunt surgery many times now, and it is a testament to how strong she really is. Let's go seventeen!

Love, Brad

Seventeen

Carly's surgery went well and she is now resting peacefully in a room on the pediatric floor. The procedure took about three hours, with the first hour being the placement of a central veinous port that we opted for Carly to get in order to make IV access easier in the future. This has always been a struggle with her, so hopefully it will help. After the port placement Dr. Gupta replaced the shunt valve and distal catheter, which were both clogged. He used the high protein valve this time around and we are hoping that number seventeen is planning on sticking around for a long time. Thanks for keeping Carly in your thoughts and prayers.

Love, Brad

One Of These Days

We knew Carly's shunt was on borrowed time, and she has let us know that it is time for a change.  She will have surgery tomorrow around 2pm to bring on shunt number seventeen. It is frustrating that her shunts aren't lasting more than a few weeks, but the extremely high protein in her CSF continues to cause problems.  Dr. Gupta plans to use a new type of shunt valve that is designed for high protein cases, and we're hoping that it will give Carly some more time between surgeries.

Love, Brad

Naptime

Carly bounced back quickly and after a day in the PICU we were sent home yesterday afternoon.  We all were obviously tired because we fell asleep in our living room less than an hour after getting home, and we managed to eat some dinner before heading off to bed.  Carly had a good day today and is eating well and sharing some cute smiles with us. We'll be keeping a close eye on her over the weekend, and the neurosurgery team is ready for a shunt replacement whenever Carly tells us it's time.

Love, Brad

Good Morning

Carly continued to be really sleepy until around 3am today, when she started to take a quick turn for the better. Since then she has continued to improve, smiling a lot and entertaining her nurse with some giggles.  She is eating now and looking more like herself and is only getting a little supplemental oxygen.  Over the next few hours we will ween her off of the oxygen, and if she tolerates that well she will be sent home.

Love, Brad

Well, Almost Finished

Carly hasn't woken up from her anesthesia as quickly as usual so we will need to spend the night in the PICU for observation. They have said that any effects from the Gamma Knife wouldn't be noticeable this early, so it is likely related to being under anesthesia for longer than usual, or related to the shunt function in some way. We'll be ready and waiting with a bottle of apple juice as soon as she is ready to drink.

Love, Brad

Finished

The procedure is over and Carly is resting peacefully in recovery. Everything went smoothly, and as long as she rouses well we will be heading home later tonight. The effects of radiation treatment often take months to become clear so it will be awhile before we know the full outcome, but we are expecting the best.

There is a fourth step waiting for Carly, she will need a shunt revision soon. Shunt 16 has been showing signs of a clog for awhile now, and we were hoping it would at least hold out until today's procedure. They removed some CSF through the shunt valve on Monday which provided a few days releif and they tapped it again after the procedure today hoping that will give her at least a few days rest after the gamma knife procedure. Thanks to everyone for holding Carly close to you today, it helps all of us.

Love, Brad

Step Three

We just met with Dr. Sneed and the radiation plan is in place. The tumor has grown since the last MRI, but is still a good size for this type of treatment. The treatment will last 75 minutes after they get Carly positioned and they believe the plotted treatment area will take care of all of the visible tumor. The tumor is close to part of her optic pathway, so all of our energy is focused on keeping that area safe while the tumor goes away. Thanks for the love and support that we are feeling all day.

Love, Brad

Step Two

We just got an update that everything is going well. The MRI is finished and Dr. Sneed (radiation oncology) and Dr. Gupta are planning the treatment now. This could take a few hours, and they will review the plan with us before starting the treatment.

Love, Brad

Step One

We just handed Carly off to the team that will be taking care of her today. She is under anesthesia now and Dr. Gupta will be placing a halo frame on her head soon. Once that is in place she will get an MRI to image the tumor. They will use these images to plan where the radiation will target, and the frame will allow them to precisely align her in the Gamma Knife machine. After they have a plan they will call us over to discuss. This should be in about three hours or so. Thanks for keeeping her in your thoughts.

Love, Brad

Thank You!

I have been meaning to post this picture of Team Carly at the Brain Tumor Walk for awhile now. It was a great day, and so amazing to see everyone in person and to see that Carly’s team raised $13,981. We are moved by the generosity of all of you and cannot thank you enough. We can only hope that this money, and the other funds raised for this type of research, can help find better treatments and cures for brain tumors.

We are also moved that our good friends on the east coast have pulled together a team for the New York City Brain Tumor Walk. Team Carly East will be walking on June 18, and you can bet that we will be there in spirit. If you wanted to walk with Team Carly but live on the east coast, now is your chance. Thanks East Coast Crew!!!

Carly has been doing pretty well since her last shunt surgery. The best news was that she was doing well enough only four days after surgery to make the trip to North Carolina to attend the wedding of our very good friends. That was a great gift for all of us. She is scheduled to have her gamma knife radiation treatment next Wednesday, June 8th. It will be an all day procedure, and we are already focusing our energy toward envisioning a perfect outcome from it. We will keep you all posted, and appreciate your love and support

Love, Brad

On The Outside

We are out of the hospital again, with Carly being discharged just before noon. We get a lot of comments from the hospital staff that it is really remarkable how quickly Carly can get out of the hospital after a shunt surgery.  I like to think that it is two parts amazing little girl and one part Team Carly that does the trick. Thanks for keeping her in your thoughts and prayers.

Love, Brad

Sweet Sixteen

Where to start? Carly recovered well from her respiratory issue last week and was discharged on Thursday afternoon. She was dramatically better than she was on Monday, and the medical team was pleasantly surprised by the speed of her turnaround.

Over the weekend Carly was doing pretty well, but we had the nagging suspicion that her shunt was not fully functioning. Yesterday these symptoms increased, and by 10pm last night there was little question that she would need a new shunt very soon. We spoke with the on-call neurosurgeon last night to let the team know her status, and at 8am Dr. Auguste called to let us know that his morning case was cancelled and they could operate on Carly if we headed up right away. By 10am she was in the OR and she is now recovering in the PICU. They found an obvious blockage in the valve which they replaced, so she once again has a fully functioning shunt. Carly is sitting in Christa's lap now drinking some apple juice and looking a lot more comfortable than this morning. We are all hoping that number sixteen is sweet.


Love, Brad

Change Of Plans

We have learned that you have to be ready for the unexpected and be flexible with plans, which we have had to put into action again. Carly started showing signs of a cold on Sunday afternoon, and overnight the symptoms got a lot worse. Her breathing was very fast and labored so Christa brought her up to urgent care for a checkup at 11am. A few hours later she was sent across the street to the emergency room, and by 8pm we found ourselves in the intensive care unit. Carly's breathing remained labored overnight and it is still rapid now but improving. It looks like another respiratory infection that has taken a good hold of her, but we expect that it will just be a few days before she is able to head home. We had to postpone her gamma knife surgery that was scheduled for tomorrow, as being under anesthesia for a full day is not a great thing for someone with a respiratory issue. It will be rescheduled in about three weeks, and hopefully we can avoid any surprises between now and then.

Thanks to everyone who came out for the walk this past weekend, both in person and in spirit. It is always uplifting to see so many of our loved ones in one place. I will post photos soon.

Love, Brad

Walk In The Park

The Brain Tumor Walk is almost here, and we wanted to thank everyone that has joined Team Carly. There are a few more days left to support the team if you haven’t already and please spread the word to friends, family and co-workers. Up to this point the team has raised over $11,000 and is once again in the top ten of all teams at the walk. Supporters of Team Carly come from all over North America, as well as Europe, Asia and South America which is a tribute to all of you and the power of Carly’s spirit. For those of you that can make it in person, we will meet up at a Team Carly sign before the walk, and we plan to have a group picnic in Speedway Meadow after the walk is finished. We can’t thank you enough for your support for the walk, and every day that we can feel the love from everyone coming our way.

After the walk comes the next step in Carly’s treatment. As you all know Carly’s tumor has made a return appearance, and while it is much smaller than it was originally we need to treat the recurrence to prevent it from getting larger. We investigated both traditional photon/fractionated radiation treatment as well as proton treatment at Mass General in Boston and after speaking with several experts we have opted for a third choice of Gamma-Knife treatment (a type of sterotactic radiosurgery.) This is not the common treatment for craniopharyngiomas, but in Carly’s specific case it looks like the best option for treating the tumor while minimizing any harmful side effects. The radiation will be targeted only to the area of the recurrence, and it will kill any cells that it comes in contact with. It will be months, maybe years, before we know if it was successful in eliminating every tumor cell, but the treated area should stop growing immediately.

For the treatment they will attach an external frame to Carly’s head prior to an MRI. They will use the MRI to guide the radiation lasers to only target the tumor, and using the frame on her head for alignment in the Gamma-Knife machine they can be accurate to less then 1mm. She will be under anesthesia for it all, and should not feel any pain during or after the procedure. The Gamma-Knife treatment itself will last about an hour, and when she wakes from her anesthesia she may be able to head home or possibly stay at the hospital for one night. It will be a long day, with a very important outcome, and we ask everyone to picture Carly as the perfect little girl that she is, tumor free and ready to move onto the next step in her recovery.

Much love to you all from Christa, Carly and I.

Mi Casa

Carly had a good night after the surgery so we were discharged this afternoon and are back at home. No matter how many times we have been through this, I am always amazed at how quickly she improves once she has a functional shunt. She is a bit uncomfortable from her two incisions but she is so much better than she was on Sunday night that it lightens all of our spirits.  Thanks for the support each and every day.

Love, Brad

Out of the OR

Carly's surgery went smoothly and shunt number 15 is in place. Dr. Gupta found two clogs in the old shunt and replaced all of the components. Her CSF continues to have really high protein levels, which is likely the culprit for all of the clogs. We continue to hope that this starts to normalize and that number fifteen is up to the task.

Love,

Brad

Fifteen

I have been meaning to write with updates on both fundraising progress for the Team Carly brain tumor walk team, as well as the plan for Carly's radiation. Those will have to wait a post, as this is short and sweet to let everyone know that shunt #14 stopped working over the weekend and Carly just went into the operating room for #15. Please keep her in your thoughts, I will post an update when the surgery is over.

Love,

Brad

Breath of Fresh Air

Carly was discharged late yesterday afternoon and we are all back at home. It is amazing how much better she is after such a short time, she never ceases to amaze me. She is still congested and will take some time to get back to herself, but she is heading in the right direction.

Love, Brad

Midnight Run

We have another medical adventure to add to the record books. Christa, Carly and I headed up to Tahoe for the weekend as we typically do during the winter. With more big snow storms on the way we were ready for some powder therapy in the mountains. On Friday night Carly had a cough that kept her, and us, up all night. In the morning the cough subsided and she looked better so we headed to Alpine Meadows to meet our babysitter and hit the slopes. The snow was knee to thigh deep and we had a great morning, but when we came in at lunch Carly did not look good and seemed to be having an adrenal crisis (low cortisol.) We gave her a cortisol shot and she started to look better but her breathing was still very labored so we took her to the ER in Truckee for an exam. They didn't like how she looked either and they wanted her to be seen by pediatric specialists at the children's hospital in Reno. Christa and Carly were loaded into an ambulance and with lights and sirens blazing they were rushed down to Reno while I followed in our car. The team in Reno placed a central IV (which was tricky) and took blood labs. The early lab results did not show an obvious cause for the labored breathing, and they felt that Carly would be best cared for at UCSF where she is well-known.

By 10:30pm Christa and Carly were being loaded into another ambulance and taken to the Reno airport where a small, four seat airplane was waiting to transport them to San Francisco. The plane was tiny and Christa had to sit in the co-pilot seat while the nurses tended to Carly in the back. There was a massive storm system in the area and they had a harrowing one hour flight through 100 mph winds and snow to San Francisco airport where a final ambulance waited to take them to UCSF. During this time I made the 4.5 hour drive (through snow and heavy rain) from Reno back to San Francisco, finally arriving at the hospital around 3:30am. There was a lot of activity around Carly most of the early morning, and things finally settled down around 8am.

It looks like Carly has a lung infection that is most likely viral. After some respiratory therapy and coughing her breathing has improved considerably today and she is smiling and eating well. The virus will likely take several days to pass and she will need to stay in the hospital until the doctors are comfortable sending her home, but after the progress we have seen today that could happen pretty quickly. It was a crazy day and we are short on sleep, but seeing Carly smile makes us feel much better already.

Back Home Again

Our stay in intensive care was short and Carly was discharged around noon today.  She is doing well, is very hungry, and is already full of smiles again. She is a little wonder and lights up our home.

Love, Brad

Recovering

Carly's surgery went fine, with a few unexpected surprises. Dr. Auguste did not find a clog in this shunt. He still replaced the ventricular catheter to the material that may help if she is having an allergic reaction. The high protein could be the cause of the symptoms that looked like a clogged shunt, and hopefully the new shunt hardware helps in lowering this. At the end of the procedure they could hear a lot of congestion in Carly's airway so they left her on the breathing machine and sent her to the PICU for recovery. A chest X-ray did not show any signs of a major lung infection so she was extubated a few hours ago and is resting pretty comfortably now. We are hoping that she can get some much deserved rest.

Love, Brad

Fourteen

Over the last few weeks Carly has shown some signs of a malfunctioning shunt, which we were concerned about happening because of the elevated protein levels in her CSF. She is still having good moments full of smiles, but it is clear that she needs to get the shunt fixed. She will have surgery today at 3pm, and they will try a new shunt material to see if an allergy could be behind the elevated protein (and all of the clogged shunts.) Please keep her in your thoughts.

Love, Brad

Next Steps

We met with Dr. Haas-Kogan from radiation oncology at UCSF this week to discuss treatment options for Carly. Radiation is the preferred treatment from her perspective and it was the consensus from the UCSF tumor board meeting, as it has a good track record of success for craniopharyngiomas. Radiation is not without issues though, and there are some side effects that we need to consider. Treatment would cause some hair loss and will likely make Carly extra tired during treatment, both of which are pretty minor. The biggest risk is pituitary damage, but Carly has already lost her pituitary gland during surgery so this is not an issue for her. The radiation can also cause damage to her vision, which is already affected to some degree, but she felt that this risk is very low. The most concerning risk is neuro-cognitive damage, which is unavoidable to some extent. Because Carly’s tumor is very small at this point the overall radiation dose and area that requires treatment are both small which will minimize this risk. Dr. Haas-Kogan believes that because of this, the expected damage would be less than 10%.

The type of radiation treatment that Carly would receive at UCSF is called IMRT (image modulated radiation therapy) which is a method that allows them to control the intensity of the radiation to help preserve nearby tissue. She would get treatments for 30 minutes each day, five days a week for six weeks. Since she would have to hold perfectly still for the treatment, and she would need to have anesthesia each time so she would also need to have a central line placed. (Placing an IV each day would be impossible.) This treatment would most likely begin on March seventeenth, and Carly could stick with her school and weekend routine during the treatments if she felt up for it.

One other radiation option is proton treatment. This is a less common treatment method and only five centers in the United States offer it. The advantage of protons is that they are very targeted, slowing down very quickly after hitting the tumor. This helps preserve surrounding tissue and may reduce some of the potential side effects that are seen in other radiation methods. We are consulting with Harvard/Massachusetts General on this option now and will see if it is a suitable alternative for Carly.

Whichever option we go with, treatment will begin soon so the tumor does not have time to grow any larger. We all know that Carly is an incredibly strong little girl, and with the support of Team Carly she will get though this. Your support also helps Christa and I each day, and we are very grateful for it.

Love, Brad

Unexpected

Carly has been feeling better since her shunt surgery and is back at school again. She has also been smiling a lot more since the surgery and she loves playing with her stuffed animal friends. This we are very thankful for, but we also got some news today which is not as good. Carly’s most recent MRI that was taken last week shows what the team at UCSF believes to be recurrent tumor. They had noticed an area that had them concerned three months ago, but Dr. Gupta was hopeful that it was just scar tissue. The area grew in every dimension in the most recent scan which is indicative of tumor and not scar tissue.  The concerning area is pretty small now, about the size of a lima bean, but it has been growing slowly for several months.

There are a few options for treatment that range from radiation therapy, surgery or some type of chemotherapy.  Each has its own set of strengths and weaknesses which we will be reviewing with a range of specialists over the next few weeks. We will also get second opinions from some of the most respected centers around the US to ensure that all of the best minds are thinking of Carly.  We keep hoping that this area will just shrink away on its own, but we also have to be prepared for whatever Carly needs. I know she is in all of your thoughts and prayers, and she can use the extra strength and healing now as much as ever.

Love, Brad

Happy At Home

Carly was discharged late yesterday and we are back at home again. Her recovery from this surgery is probably her best yet, and she slept well through the night last night. She is a bit uncomfortable from her two incisions, but Tylenol seems to be helping and after a few days that should pass. She is one tough and amazing little girl.

During her surgery they took a sample of her CSF to check for infection and other cell counts.  The initial results for an infection do not show anything, and it is pretty unlikely that this is an issue.  The protein levels did come back very elevated again which was not expected. As you might remember, this was an issue for Carly last spring and many of her shunt failures last year were attributed to high protein. At one point last year her protein level was 30 times the normal level but it had dropped quite a bit over the last few months. It is now back up to about 20 times the normal level but the cause is a mystery. We will follow up with neurosurgery next week to see if they have any additional insight but for now we'll just wait and see, hoping that this shunt can last awhile. Thanks for the love and support, we can feel it each day.

Love, Brad

A Baker's Dozen

Things can change in a hurry sometimes, and it certainly did for Carly over the last day. She had shown some signs that looked a little like shunt problems over the last few weeks, but we were never certain. On Monday and Tuesday nights she had a few cranky hours in the night, but we still thought that it could be something other than her shunt. That all changed last night when her symptoms went from low-grade and infrequent to full-on and non-relenting in just a few hours. She was able to sleep a little but we knew that she needed to have surgery today. We came to the emergency room in the morning and by 4:45 in the afternoon she was in the operating room to get shunt number 13. The surgery went smoothly, and Dr. Auguste found a big blockage that was preventing the shunt from working. He replaced the shunt valve and the blocked catheter in her belly. She already looks a lot better then she did earlier today, and she is resting pretty well right now. If all goes smoothly we will be able to head home from the hospital tomorrow.

Love, Brad

School Time

Carly reached a new milestone this week, as she started pre-school on Monday. Over the past few months we have been working on getting her placed at one of the special eduction pre-school programs in San Francisco and a few weeks back we learned that she would be placed at Grattan which is just a short 5 block walk from our house. She was outfitted with a wheelchair and will have a lot of special devices at the school to help her stay involved with the other kids in the class. Her class is all special needs kids, and the school also has typical kids, and we are hoping the extra stimulation from all of the kids will help Carly begin to stay awake longer and accelerate her development.

One little boy has already taken a liking to her, and he pushes her out to the playground and even gave her a little peck on the cheek on Tuesday. Carly will need to have her own teacher assistant assigned to her and this will be provided by the state. While they are working on hiring someone for that position, Christa is filling that role and stays with Carly for the four hour school day. They expect to have someone hired in the next few weeks and then Christa will be able to have a little time to herself during the school day.

Carly’s seizures remain under control since we started the most recent medication and she hasn't had a seizure since January 10. After over four months of seizures it is a great blessing that she isn’t needing to go through that now. Once she completed the taper off of the last seizure medication she has started to be more awake and is eating better. There does seem to be something that is bothering her that looks a little bit like a failing shunt at times, but we really have no idea what the problem might be. At this point we are taking a wait and see approach, and hopefully over the coming weeks these symptoms will start to fade. I will be sure to keep the school pictures coming.

Love, Brad

(I wrote this last night, but didn't get around to posting it. During the night Carly's symptoms that look like a failing shunt got more severe so we are pretty certain that she will need to have that replaced in the next few days.  I will keep you all posted.)

Always Remembered

Incredibly another year has passed and it is January the 27th again.  It is a day that will always have meaning to us, no matter how we wish it didn't.  Three years ago we lost one of our closest friends, Tyler Palmer, to a tragic ski accident. He meant so much to so many, it is still hard to believe that he is not with us. Tyler introduced me to my wife Christa over thirteen years ago and for that I am forever grateful.  While we will always mourn his loss, we also see this as a day to reflect and check to see if we are living life to the fullest as Tyler did. He would often ask people what they would most like to do with their lives, and after listening to their answer he would then say “Ok, why aren’t you doing that and what is the first step to getting there.” I think we can all live more fulfilling lives if we follow Tyler’s advice. So today, in honor of him go enjoy the outdoors, make a conscious effort to do something that helps our planet, give someone a big heartfelt hug, and take a step toward following your dreams. We love you Tyler.

Love, Brad, Christa & Carly

Happy Birthday Carly!

It is hard to believe that our little girl is three years old today. She is getting bigger each day and her cute little curls continue to grow. (And as you can see, she got some new boots for her birthday.) She has been doing pretty well recently, continuing to eat well and drink from a bottle like an old pro. Her seizures were not changing with her last medication so we started another late last week. So far it seems to be helping as she had her first seizure free day since September over the weekend. Although she has had a few since then, they have been shorter and less intense. Carly has been really tired this week, sleeping for the majority of the day and having some trouble staying awake to eat. This could be adjusting to the new medications and she is also fighting off a cold, so we will be keeping an eye on that and hoping that she starts to feel more energetic in the coming days. I am thankful everyday for the medical team and the support from Team Carly that has helped her to get to where she is, and will continue to help lift her up on her road to recovery.

Love, Brad