Return Trip

Since our return home on the 23rd Carly has been increasingly fussy when eating or nursing. Most of the day she was doing pretty well and she seemed to be recovering from her last hospital stay, but every feeding session brought a lot of screaming. This made it increasingly tough to get fluids in, and through the weekend we were concerned that her sodium level was becoming elevated. We took Carly in for a blood lab Monday afternoon, and as expected her serum sodium was very high. The only solution was to head to the emergency room to help hydrate her.

They attempted to place an IV but most of Carly's veins, which are hard to find through her cute baby fat, were bruised up from her last stay at the hospital. The best option was to place an NG tube (nasogastric tube) which is a small tube that is inserted down a nostril and into the stomach allowing fluids to be pushed down the tube whenever needed. The tube was placed while we were in the ER and around midnight we were admitted to the hospital for overnight observation. Carly could clearly tell that we were back in the hospital and she did not like it one bit, but fortunately it was a short stay. By 2pm yesterday Carly's sodium was back to a safe level and the endocrine team was comfortable sending us home to continue to rehydrate Carly. We were trained on how to place an NG tube and Carly was sent home with one in place that we will continue to use until she is reliably eating on her own again. Christa and I had discussed getting trained on placing an NG tube earlier, thinking it would be good to have a way to get fluids into Carly in case of an emergency, so that is a positive that came from this latest trip to UCSF (which is hopefully the last trip for 2009!)

Love, Brad

Merry Christmas

Carly is worn out from the last two weeks in the hospital, but she is already getting stronger after just one day of home time. It was a beautiful day in San Francisco so we took a family walk, had Christmas brunch and a mimosa at All You Knead on Haight street and lounged on our sofa. Christa and I savored every minute of it. We're hopeful that Carly will be back to herself soon, and we wish you all a very merry Christmas.

Love, Brad

Our Christmas Miracle

I can hardly believe it, but Carly was discharged this evening and after two weeks in the hospital we are finally back at home. Once again, the fact that we live so close to the hospital helped convince the team at UCSF to let Carly go home sooner than they would have in most cases. We will be on high alert the next few days making sure Carly doesn't have a relapse, but that will be much easier to do in the comfort of our own home. I know we will all sleep well tonight.

Love, Brad

Big Turnaround

What a difference a day can make. Yesterday at this time Carly was in a very critical state that had everyone worried, including the medical team. Her temperature was up to 104F, her heart rate was 220 beats per minute, her respiratory rate was 105 breaths per minute, and her pupils were unresponsive to light. Around 10pm everything started to settle out and by midnight all of her vital signs were back within her normal range. The team ruled out a shunt problem, and although some blood cultures need a few more days to finalize they are pretty certain that the symptoms were not caused by an infection.

The latest thought is that Carly was suffering from something called paroxysmal autonomic instability. This means that the autonomic part of her brain which controls critical vitals like heart rate, breathing and temperature basically got out of whack and worked itself into a state that it could not recover from. This is something that Dr. Gupta has seen with patients that have had brain injury, and it can also occur with someone who has had surgical procedures like Carly. He said that he has not seen it to the extent that Carly suffered from last night, but added that typically it is a transient occurrence that people eventually grow out of. The symptoms looked very similar to what Carly suffered from during our month long stay in June, but they have never occurred at any other time. Most likely Carly's body was pushed too hard with everything that she has gone through here and her brain could not compensate. This also means that it is not very likely that we will see something like this on the outside.

The best news from the day is that Carly nursed for the first time in over five days. This is always her sign that she is starting to feel better and it certainly makes Christa and I feel relieved. She slept for most of the day, catching up on some much needed sleep. If she can continue this trend there is still a chance that we will be able to go home by the end of the week. While that would be an amazing gift, just seeing Carly feeling better is all I could ask for. (Ok, I'm asking to go home too.) This is yet another experience that is harder than anything we thought we were prepared to handle, and we have no doubt that you have all given us the extra boost we have needed to make it though. The love of many with a shared focus is a powerful force.

Love, Brad

Two Steps Back

Over the last few days Carly has been having increasingly bad days. The staff in the PICU expected that it was a bug that would pass, and Carly was moved to the regular floor of the hospital yesterday afternoon. She was very irritable all last night, with Christa and I doing everything we could to keep her calm. By late morning she started showing more serious symptoms and after another head CT scan she was sent back to the PICU. The head CT looked normal and Carly's shunt seems to be working, so the exact cause of her symptoms is still unknown. Fortunately, a few hours ago they were able to finally get Carly to a more restful state. She will have an overnight EEG study and tomorrow we will meet with the neurology and neurosurgery teams to come up with a plan. We will keep you all posted, and your love and support is helping all three of us.

Love, Brad

The Peanut Gallery

Carly had a decent night and today was pretty quiet as well. She is still uncomfortable, refusing to eat and has only opened her eyes to peek out a few times but we are hopeful that she is starting to trend in the right direction. The CT scan of her head last night didn't show any surprises which is reassuring, and it was clear that the shunt is working properly. There is a chance that Carly is agitated from too much drainage from the shunt so the neurosurgery resident stopped by today and adjusted the valve so it flows more slowly. We will see over the next few days if this makes the difference we are looking for.

The holiday season brings many special visitors to the hospital. A few days ago Carly was visited by the San Francisco Police Department who brought her a stuffed animal as a gift. We chose a gorilla to help remind Carly of her friend Koko. Snoopy Claus made an appearance yesterday, and even if Carly couldn't fully appreciate it Christa and I both thought it was pretty funny. We hope the real Santa Claus gets to visit Carly at home instead of the hospital this year.

Love, Brad

Who's Got My Z's?

Unfortunately Carly had another bad night. She started getting really agitated around 1 am and it kept up for about six hours before she finally settled. She has done pretty well for most of the day, fussing a bit and usually consolable but she is still not feeling like herself. She is due to have a head CT scan at some point tonight to make sure nothing in her head looks unusual, and we will do our best to make sure she has as restful a night as possible. Thanks for all the love you are sending our way, it helps make up for some lost sleep.

Love, Brad

Restless

Carly didn't have the best night last night. Around 5pm she starting getting very agitated for an unknown reason and it kept us up for many hours before we finally gave her a big enough dose of a sedative that helped her finally relax. Today she has been less agitated but she is still uncomfortable and is not interested in eating once again. One theory is that the drop from high cranial pressure to lower (normal) cranial pressure is an uncomfortable change that takes a few days to adjust to. There is another theory that one of her medications was reduced too quickly, or that the pneumonia is causing the agitation. She is still uncomfortable now but less than last night and we are hopeful that she will get some much needed rest. We will explore all of the theories tomorrow and hopefully something will help her feel more like herself.

Love, Brad

On the Mend

Carly was taken off the ventilator this morning and it was great to see her cute pudgy cheeks that had been hiding behind the big pieces of tape holding the tube in place. She opened her eyes more than she has this entire stay and looks much more comfortable than we've seen in several days. Most importantly she nursed from Christa for the first time in almost a week, and seemed hungrier than she has in a really long time. Chest x-rays taken this morning don't show any major changes in her pneumonia which is a promising sign that things are likely to get better rather than worse. She has a lot of spots that must be sore from incisions, needle pokes and general soreness from surgery but she is a tough little cookie that we can't help but be proud of.

Love, Brad

The Pressure's Off Reprise

Carly's intracranial pressure was building up all day and she was very uncomfortable so we were counting the minutes until she could have her surgery. She headed into the operating room at 4pm for the shunt revision, and they finished just after 6:30pm. Dr. Gupta said the surgery went better than he had expected and they were able to pass a new catheter down the same vein they originally used which helped minimize the number of incisions that Carly needed. Carly was intubated for the surgery and they were able to remove a significant amount of junky secretions from her lungs which should help her recovery from the pneumonia. She will remain intubated overnight, and if she is breathing well on her own tomorrow they will take her off of the breathing machine. Thanks for all the love and prayers that helped keep Carly safe through another surgery.

Love, Brad

Warm It Up c

Another day up on the hill has passed and it was pretty uneventful. Carly has continued to be very sleepy and her temperature has been on the low side so she is resting underneath a pile of warm blankets, wearing one as a hat. Early in the day the neurosurgery resident tapped her shunt to remove some CSF to help relieve some pressure on her brain while she waits for surgery. She was a little more alert after the tap, opening her eyes a few times and even trying to pull out her nasal cannula (the breathing tube in her nostrils.) Her chest x-ray this morning didn't show any change in her pneumonia which is a good thing, and all of her vital signs have remained steady which hopefully means that the pneumonia is not intensifying. Dr. Gupta stopped by in the morning and said that he hopes to be able to get a spot on the operating room schedule tomorrow for Carly's shunt revision. Christa and I both feel very lucky to have the care of doctors and nurses that we trust and the support of all of you.

Love, Brad

On Hold

Today was a quiet day which is a great thing when in the PICU. Carly has been pretty wiped out since yesterday afternoon, sleeping steadily for the last twenty-eight hours. After the last few days she deserved some much needed rest, and it should help her body fight off the pneumonia bug. Dr. Gupta decided to postpone Carly's shunt revision surgery until early next week to give her body some time to recover from her pneumonia. His biggest concern is that the virus or bacteria from her lungs could find its way into the surgical site, possibly leading to more complications from infection. We could all do without any additional complications and since Carly is comfortable, waiting a few more days for the surgery seems like a good idea. We do have a plan if Carly starts to suffer from high pressure again, but hopefully she can continue to rest and get stronger between now and then.

Love, Brad

Awaited Answers

Carly didn't have a great night last night. She was really uncomfortable and agitated and it was clear to Christa and I that she was suffering from high intracranial pressure. We probably each got around 45 minutes of sleep, but we were able to help Carly get through the night by holding her hand and singing to her. Today was all about trying to find some answers. Carly had a few different studies and tests to check on both the pneumonia and her shunt function and a few hours ago all of the results were in.

It does look like Carly has pneumonia, but it is unclear whether it is bacterial or viral. The treatment for the bacterial version is a seven day course of the IV antibiotics that Carly started yesterday and if it is viral all you can do is wait it out. They also found that there is a clot blocking the flow of Carly's shunt at the distal end, preventing it from draining her CSF as well as needed. Dr. Gupta was consulted and he will most likely operate on Carly tomorrow to replace the faulty parts of the shunt. They have not scheduled a specific time yet as they want to recheck all of Carly's vitals in the morning to verify that she is ready for a surgical procedure, but we should know pretty early in the day. Right now Carly is resting peacefully and we are hoping to get some much needed rest tonight. Thanks for your continued love and support, we can feel its warmth through the cold, rainy weather outside.

Love, Brad

The UCSF Dash

It looks like another good run outside of the hospital has come to an end. Carly has not been feeling great the last few days, acting more agitated than usual. Christa spent seven hours at urgent care with her on Monday as they ran multiple tests that didn't reveal any problem. After a follow up appointment with endocrinology yesterday we were told to try and get Carly's hydration up over the next few days. Unfortunately Carly decided that she didn't want to eat or drink anymore. After several attempts through the night it became clear that we had to come up to the hospital this morning.

Before we came up today Carly took a turn for the worse and we literally ran her up to the emergency room. She was in pretty critical condition when we arrived and there was a lot of commotion to get her stabilized but she was looking a lot better after a few hours. We are now up in the PICU (a familiar place to us) and Carly is doing pretty well. She is still agitated and not very interested in eating, but she looks much more like herself. A chest x-ray indicated that she may have bacterial pneumonia which they have already started treating with antibiotics as a precaution. Tomorrow she will have a follow up x-ray to see if the area of concern still looks like pneumonia. They are also monitoring the function of her shunt to see if increased cranial pressure could be causing any of her discomfort. We hope to have a few more answers tomorrow, in the meantime we are filling the hospital room with Carly's favorite tunes and a lot of healing energy.

Love, Brad

'Twas The Day After Thanksgiving

I was looking back at last year's Thanksgiving post and was amazed how much has happened since then. At that time Carly was only six weeks out of her first tumor resection surgery, she had a giant collection of fluid on the top of her head and she had residual tumor that was growing back quickly. Countless nights at the hospital and many surgeries later, Carly continues to be quite the fighter.

The best recent news is that Carly remains tumor free. She had a routine MRI check-up a few weeks ago which confirmed that the tumor has not grown back. This was music to our ears. Carly has not had much progress on the seizure front though. We have tapered up to the maximum dose on the second medication and she continues to have many seizures each day. At one point they dropped as low as two seizures a day, but they have increased again to as many as eight in a day. She has also been very tired since her seizures began on September 26th, sleeping for nearly twenty hours a day and only smiling a few times since then. She clearly is not feeling great and we need to get to the bottom of this problem as soon as possible. She will most likely begin a third medication in the next few days, and we all hope that this is the one for her.

Several things have not changed since last Thanksgiving. We continue to be thankful for all of our friends and family that have offered their love and support. You have all helped us in so many different ways, we can't imagine going through this without you. I am thankful everyday for Christa who is not only an amazing wife but also the most incredible mom a little girl like Carly could ask for. And of course, we are thankful for Carly who continues to be an example of strength and perseverance and always brings out the best in everyone around her.

Love,

Brad

Shine A Light

Carly's last EEG confirmed that her seizure medication was not helping. She started her new medication on Thursday which will taper up over a month as her first medication is tapered down. It will still take some time before we can tell if the new medication is helping, but her seizures have gone from around seven a day to three/four a day since the change so things are looking promising.

The day the new medication began was also a big day as Christa, Carly and I hopped in the car and headed south to Indio, CA for Festival 8, the first ever Phish festival on the west coast. For those who aren't familiar with Phish, they are one of our favorite bands and the link that connected us with many of the great friends in our lives. We thought that three days in the sun with many loved ones and great music would be a good thing for all three of us and we were not disappointed.

Phish played a total of eights sets of music over the course of the weekend and Carly made it to all of them. Nothing fills the air with good energy like tens of thousands of happy people dancing the night away, and I really think that this could only help Carly with her healing. All of our friends dressed up for Halloween, many of us as antelopes in honor of the Phish song "Run Like and Antelope" and Carly was the cutest chicken I have ever seen in a costume that Christa made for her. As the band covered the Rolling Stones album Exile On Main Street during the second set on Halloween the lyrics for "Shine A Light" really struck a cord:

"May the good Lord shine a light on you,
Make every song you sing your favorite tune.
May the good Lord shine a light on you,
Warm like the evening sun."

Our days can still be a roller coaster ride but times like these surrounded by so many of our Team Carly family shows how many great moments there are in life, and how many great memories Carly has to come.

Love, Brad

Aloha

The last few weeks have not seen a lot of changes for Carly. Her seizures have decreased in intensity and frequency a few times as her seizure medication has been increased, but each time they have eventually returned. The medication reached the maximum dose last Friday and for a few days she only had 2-3 short seizures each day lasting around 30 seconds but they are back to 7 or so a day that last anywhere from 3 to 15 minutes. When the seizures first started we were told that it may take a few months of trial and error with a short list of medications to get them under control, and it looks like we aren't there just yet. Carly will have a few blood labs and another EEG on Tuesday to give some additional insight on how she is doing and the neurologist will either continue to increase her current medication or begin the taper up with a different one.

While Carly has been dealing with this issue, we had the opportunity to go to Hawaii for a part business (a work convention) and part pleasure getaway. We were a bit concerned since Carly's seizures were not under control, but the neurology team assured us that the seizures were not an imminent danger to her and they felt that Christa and I could care for her just as well in Hawaii as we do at home. It ended up being a great time away in the sun, and Carly had many moments when she was clearly enjoying herself. From her first bite of fresh pineapple to her first session of floating in the ocean (ok maybe she didn't love that, but in the end she did seem relaxed) she definitely liked island life. Christa and I got into the island life right away too and it was a great way for all of us to relax a bit as we try to help Carly get past this hurdle.

Love, Brad

Working Under The Harvest Moon

Carly's week has been ok. Last week she was fussy for much of the day, but with several teeth coming through, a little constipation, and some seizures, who could blame her. Two out of those three have eased up for her, but she is continuing to have occasional seizures. She started taking her anti-seizure medication last Monday, and these medications are typically started at very low doses and then increased every four-six days until an effective dose is found. At this point Carly is still having 2-3 seizures a day and they can last anywhere from 2-10 minutes. It can often take several weeks to find the right dose, so we will continue until the seizures finally stop or we reach her dosage maximum. If the current medication does not stop her seizures, there are others to try. It is very important that we get these seizures under control as quickly as possible though, because if they go unchecked they can escalate to more critical seizures and her neuro-development will likely plateau as she continues to have them.

Carly is doing well otherwise, and she seems to be looking around more and more each day and loves to test out her new teeth by chewing on her stuffed carrot. It is clear that a lot is going on up in her head right now and we will continue to surround her with love to help get her to the next step in her recovery. You can help us by continuing to envision Carly as the perfect, healthy little girl that is her true self.

Love, Brad

Up On The Hill

Carly has been cruising on her slow and steady recovery, getting a little stronger each week through her many physical therapy sessions. Late last week, both Thursday and Friday, she had a few 20-30 second moments that looked a little unusual to us so we were keeping a close eye on her over the weekend. On Saturday and Sunday these unusual events culminated with what looked like a seizure that lasted almost 10 minutes while we waited at a tram (MUNI) stop in San Francisco. As soon as we got home Christa called the pediatric neurology department at UCSF, who recommended that we come up to the hospital as soon as we could for observation.

We arrived at our hospital room around nine yesterday evening and they immediately hooked Carly up for an overnight EEG study. An EEG requires 24 leads to be glued to your head using a loud vacuum hose to quickly dry the glue. The leads measure your brain activity and can indicate anything unusual such as a seizure. Needless to say, Carly was not happy getting the leads attached and she was pretty exhaused from yelling after the two hour process of setting up the EEG. After about fourteen hours of observation the neurology team determined that Carly was in fact having a type of seizure. The seizures are a bit unusual because Carly is interactive throughout the event, and she will even smile as it is happening. They have placed Carly on an anti-seizure medication and expect that it may take a few days for it to take full effect but we were able to head home this evening after our shortest trip to the hospital to date. Carly is doing well now and is ready for a good night's sleep in her own bed. This type of thing is not unusual for kids who go through everything that Carly has and it may simply be a passing issue as her brain rewires itself. She continues to be as strong as ever and will make it over this hurdle like every other that comes her way.

Love, Brad

Quite A Year

It was one year ago today that our lives took a turn for the unexpected. Christa, Carly and I sat for what seemed like hours in the exam room waiting to hear the result from Carly’s head ultrasound. When the doctors walked into the room we didn’t know what to expect, but we could tell it wasn’t good. “Your daughter has a very large brain tumor.” It felt like all of the air was sucked out of the room, leaving us gasping for a breath. There was no way to know how to react and we didn’t have any idea what was in store for us.

It is putting it mildly to say that it was a tough year as Carly had to undergo fifteen trips to the operating room and a total of nearly four months in intensive care. She has proven to be a mighty little girl though, and no matter what has been thrown her way she has risen to the challenge. Her amazing spirit seems to radiate from her and she has a way of bringing the best out of anyone that she meets. I can't help but feel privileged to have been trusted with the care of such an incredible little girl.

The love, prayers and healing energy that all of you (who we now know as Team Carly) have continuously sent out to Carly, Christa and me has carried us through all of the tough times and it continues to help Carly on her healing path today. It has been inspiring to see and feel the power of hope and love, and I don't know how we would have made it this far without you. We are so grateful for your support. Carly may still have a long way to go to get back to 100%, but with her amazing spirit and the power of Team Carly she can't be stopped.

Love,

Brad

Generations

Carly continues to slowly and steadily improve. She has started to pull her legs up while lying on her back which she hasn’t done since her surgery in April. This new skill will help her strengthen her stomach and legs, and is one of the important first steps toward rolling over, sitting up and eventually crawling. She is also looking around more each day, and is usually pretty quick to smile with a tickle of her cheek or nose accompanied by silly sounds. (And what a cute smile it is!)

We flew to Michigan late last week to catch up with my family and spend some time relaxing at our cottage on Douglas lake. Carly met her three beautiful cousins (Kate, Tess, and Mary Claire) from Ann Arbor for the first time and also had her first visit with her great grandmother, Grammy. Grammy was quick to remind us that she will turn 97 in less than two months, and she can still describe in detail the scene when she met my grandfather over eighty years ago. Carly certainly has good genes on her side. It was amazing to see four generations of women from my family in the same room, and easy to see where Carly gets her resilient spirit.

Love, Brad

Keep On Truckin'

Carly has continued on her path of slow but steady progress over the last few weeks. Most importantly, she has steered clear of the hospital and all of her blood lab results continue to be normal. She has started to look at Christa and I when we talk to her which is something that she has rarely ever done before and on several occasions she has welcomed me home from work with a big smile. It really doesn't get any better than that.

Although things are going in the right direction, Carly is still keeping us on our toes. During a trip to Lake Tahoe last weekend Carly spiked a little fever which is a lot more critical for her than a typical kid. Because Carly doesn't have a pituitary gland she needs increased amounts of hyrdocortisone administered anytime her body is under stress, including a fever. These issues were a contributing factor to her last trip to the hospital so needless to say we were a bit nervous as we waited to see if the fever would resolve itself with hydrocortisone, Tylenol and a cold washcloth on her head. Fortunately she started feeling better and Christa and I were able to breathe a big sigh of relief. We will probably need to deal with events like this for years to come, but we take comfort knowing that Carly is always surrounded by the love from all of you, keeping her safe and guiding her on her road to recovery .

Love, Brad

No News IS Good News

I just realized that it has been over a week since my last Carly update. I can't believe an entire week has already gone by, but I am so happy that it has passed so easily. Carly has been doing really well and continues on her slow but steady path of recovery. Last Monday she had a head CT scan to see how her ventricles looked since her shunt was reconnected and things looked good. Her ventricles are smaller which means that the shunt continues to help alleviate the pressure in her head. There is still a lot of fluid between her brain and skull, but this will be there until her brain grows to fill the space that was once taken up by her tumor. She has been sleeping really well which has helped us to make up for lost time, something we will take as long as we can get it. She has also been smiling more and her awake periods are getting longer and more frequent. All in all, it was a good week.

Love, Brad

A Song I Heard The Ocean Sing

We were looking to spend some time in nature so we took Carly on her first ever camping trip this past weekend. We headed north and found a perfect spot to pitch our tent literally on the edge of a cliff overlooking the Pacific. Christa and I have always done a lot of camping and it felt great to breathe the fresh ocean air but I think Carly may have liked it the most. As soon as the tent was set up we took her inside and the first thing she did was smile. She seemed at peace for the entire weekend, sleeping great and crying less than she has in weeks. She also did a good job holding up her head and even sat up on her own on Christa's lap for a few moments as we watched the sun set on Friday night. On Saturday the wind really picked up, sending our neighbors into their van for a good part of the day, but we were happy to sit there in our chairs at the end of the continent letting the wind power blow away the residual stress from the month in the PICU. We are already counting the days until our next camping trip together.

Love, Brad

Break On Through

The last few days have been hit and miss for Carly. The molars that started coming through last week continue to make their way in and now all four corners of her mouth are showing the signs of some teeth. Two out of the last three nights Carly has been very uncomfortable, crying all night and sleeping around 3 hours or so, but we keep reminding ourselves how much better this is than sleepless nights in the PICU. It is a bit more complicated since Carly has other issues that could be bothering her, but we are pretty certain that it is only teeth this time around. Because she hasn't learned to pick things up or to put things in her mouth yet she has less coping mechanisms than a typical kid, but eventually all her teeth will be in. Until then we can power through the day with a little extra caffeine.

Carly has definitely shown improvement over last month. Her neck is getting pretty strong and she can hold her head up for minutes on end now. She is also looking around a lot more than she has since the tumor surgery in April. Her right eye seems to be stronger than her left now and today her ophthalmologist told us we could stop patching her eye for now. In the last few days Carly has starting making some talking sounds, mostly "ahh", something that she hasn't done much of since October. We'll take all of the progress we can get.

Love, Brad

Back On The Train

Carly has had mostly good days this week which is just what we are looking for. Her stomach seems to bother her occasionally and three new teeth have broken through the skin over the last few days which has kept things interesting. Her nights have been pretty amazing as she has slept for seven straight hours or more for four consecutive nights now. I don't think we have ever experienced that and it has helped us all catch up on some much needed sleep. Even when she does wake up in the morning she seems completely content to just look around the room from the comfort of her bed which is what we usually find her doing each morning.

Carly had an impromptu checkup with neurosurgery yesterday to evaluate her shunt setting. The shunt has a magnetic valve in it that allows for adjustment of the flow rate by holding a magnet up to her skin and turning the resistance up or down. Her fontanel is very sunken now which means that the excess fluid is being drained very easily so the shunt resistance was turned up one level to try and get a bit closer to a natural drainage/absorption setting. They were very encouraged by how good she looked and happy to hear how well she is doing with the taper from her medications. She should be able to get back to her physical therapy soon and hopefully she can make up for some lost time pretty quickly.

Love, Brad

Relaxation Station

Carly, Christa and I wish you all a happy 4th of July. We usually spend this weekend dancing away the day (and night) at the High Sierra Music Festival, but Carly can celebrate her second festival in 2010. Carly is doing well, sleeping much better than she has in a long time and getting stronger by the day. Two of her molars have decided to break through in the last two days, and the other two look close behind. They have her crying more than we would like, but regular baby issues are much easier to deal with. It is a bit of a surprise since she only has her two middle bottom teeth at this point, but when did Carly ever do anything on a typical schedule?

We all needed some rest, relaxation and rejuvenation after the last month so we are spending the weekend at the Cavallo Point Lodge in Sausalito. It is close enough to home and UCSF that we were comfortable coming here only days after getting out of the hospital, yet it feels so far from our time in the PICU. This photo was taken from our balcony, and we are all soaking in the view and the fresh air.

Love, Brad

Walkin'

Life on the outside beats the hospital any day. Carly was a little restless in the night, but she loved getting to spend the majority of her day strolling around San Francisco. She alternated between dozing and soaking in the warm sun and fresh air and seemed to love every minute of it. Her final walk through Cole Valley ended with a nice long nap with a few of her favorite stuffed friends. Now that is how a little girl should get to spend her day.

Love, Brad

Way Back Home

We're out! What better way to usher in July than to be discharged. Carly had another good night, her best in a month, and we were sent home to allow Carly to get back on her healing path. There are a few medications that she still needs to taper off, but we will be able to manage that on our own over the next week or so. Little C seems happy to be back in her house, and after nearly a month away Christa and I were relieved to finally step through our front door again.

Since this journey began in September 2008, I have known that Carly was both a little miracle and a tough fighter. Never has she had to show that more than on this trip. The medical staff at UCSF are amazing, but Carly still managed to keep everyone guessing for so many weeks. The complete story will never be known for sure, but the version we are sticking with is this: Carly had a virus or some other type of stomach issue that caused severe abdominal pain. As the pain worsened, her body was not able to mount an appropriate adrenal response because she does not have her pituitary glad. She went into adrenal shock, despite the stress dose of hydrocortisone that we injected into her leg, and we had to rush her to the emergency room. After she was stabilized they did scans of her head and even used an external ventricular drain to make sure she didn't have excessive intracranial pressure. At that time her cranial pressure was fine so the search moved on from her head. During the next few weeks she continued to have intense pain and with each multiple hour crying episode the pressure in her head was pushed beyond the limit that she could manage on her own. The original source of her pain then ran its course, but she was left with increased cranial pressure that was only relieved when her shunt was reconnected. In the future we should be able to avoid a repeat of this because the shunt will prevent the pressure in her head from ever getting to a critical level.

Carly, Christa and I want to thank everyone for the love and support that has helped us get this far. She has a lot of healing to do, but she is a remarkable little girl and she will continue to heal and teach us something new each day.

Love, Brad

Baby I Love You

It was another good day, a trend that we could get used to. Carly continues to eat well and they removed her NG feeding tube and the central line that has been running into her right jugular vein since June 6. She is a little swollen from the medications and IV feedings but that doesn't stop her smile from brightening everyone's day.

Today is the day we bid farewell to June. I have always liked it as months go, but 2009 is one that I never want to repeat. It is hard to believe that we have spent nearly the entire month here in the fish bowl like rooms of the PICU. It is still impossible not to feel fortunate to have such an amazingly strong daughter, an incredible wife, caring and helpful family, and friends around the world that offer so much love and support. I can't wait to thank you all in person, on the outside.

Love, Brad

I Can See You Smile

Today marked a few big milestones for Carly. First, she cracked a little smile when Christa squeezed one of her favorite squeaky toys. It may have been a small smile, but after a 25 day hiatus from smiling we were thrilled to see it again. The second milestone is that she was just taken off of IV fluids for the first time since we arrived and she is now getting all of her fluids and nutrition from nursing. This is such a long way from last week, and very encouraging for a discharge home in the near future. The last milestone is that we got the official radiology report from last Friday's MRI and there is no visible tumor recurrence. Eighty-seven days of tumor free living and counting!

The last major issue is that Carly continues to have intense stomach pains any time she tries to poop. It is clearly excruciating for her and she turns blue and screams through the pain several times a day. We will likely push for an x-ray tomorrow that could help verify if the issue is residual barium from her diagnostic test last Tuesday or if there is a something else all together. If we can just get her through this last problem we should be able to put this latest chapter of "Life in the PICU" to rest.

Love, Brad

Life During Wartime

Our fourth weekend in the PICU is coming to an end and things are looking much more promising than they have the previous three. Carly's night and day were pretty good, interrupted with a few big rounds of crying. The incisions from her surgery are probably pretty sore, but mostly she seems to be bothered by some lower GI pain. The barium that they put in her belly on Tuesday went in easily, but it isn't passing through unnoticed. Apparently when it sits in your colon without any water to help it move through it turns into a hard solid mass, and that solid mass doesn't feel great on its way out. That issue aside, Carly seems to be doing really well. She nursed today for one of the first times in three weeks which is a major step toward home, and therapeutic for both mother and daughter. Tomorrow we will discuss with the team what they want to see before letting Carly finish her healing at home, and barring any major changes I expect that could be relatively soon.

It has felt like all out war here in the hospital for the last 23 days. Carly, Christa and me versus an unknown illness that kept returning just as we thought things were turning in our favor. There have been so many battles along the way I am almost beginning to forget the details. I think that is the brain's way of giving you a break from traumatic experiences. In the last seventy two hours the battles have finally started going our way. I believed all along that we would come out triumphant, only now does victory seem to be on the horizon.

Love, Brad

Beginning To See The Light

Carly wasn't feeling great this morning, but that was to be expected so soon after her surgery. By this afternoon things took a turn for the better and since 4pm she has been as peaceful as I have seen the entire time we have been here. She is handling her NG tube feedings well and is now up to a whopping 2 tsp (10 ml) an hour. Tomorrow morning we will begin to taper down the medications that she has been given over the last three weeks. Getting her back to herself without these medications and her being able to nurse are the two main hurdles between us and home. Today I saw a glimmer of light at the end of the tunnel for the first time and I expect it will be getting much brighter in the coming days.

Love, Brad

If You Can Heal The Symptoms

“If you can heal the symptoms but not effect the cause,
it’s quite a bit like trying to heal a gunshot wound with gauze.”

These lyrics from Phish’s song Sand have been running through my head for the last three weeks. While Carly has undergone countless diagnostics tests they have attempted to treat her pain symptoms with medications, but the cause remained a mystery. The medications gave temporary relief along the way, but the pain always crept back. On top of that, the medications have their own side effects which seem to make Carly uncomfortable making it even more difficult to figure out what the root cause really is.

It looks like we are finally zeroing in on a cause. This all started over three weeks ago when Carly started to have intermittent stomach pains at home. It escalated to the point of her going into shock the day we brought her to the emergency room. The gastritis that GI found could easily explain the sharp abdominal pain that Carly was experiencing and the results from this morning’s MRI give more of the story. They found that there is a lot more fluid collected between Carly’s skull and brain which is leading to excessive cranial pressure. While she was able manage her CSF without a shunt under normal circumstances, it looks like she is not able to keep up when under extreme pain which naturally increases the pressure it her head.

To relieve the pressure in her head, and help her in the long term, she went into the operating room once again around 5:30 pm today to have her shunt reconnected. The procedure took three hours, a little longer than expected, and in the words of Dr. Auguste, “Carly made them bring their A game once again.” They had to replace all of the shunt hardware including the catheter that runs from the shunt valve into the right atrium of her heart, but they are very happy with the result and said that Carly was strong through the entire procedure. She will be closely monitored over the next several days but we expect that this will finally give her the relief that she deserves. Thanks for continuing to lift her up with all of your love and prayers.

Love, Brad

We're Getting Somewhere

Last night was a good one for Carly. She slept comfortably on her back for most of the night, a position that she loves at home but has refused for most of our time here. This morning she started getting cranky and spent most of the day crying out if someone wasn't holding her hands or patting her bottom. Thankfully we were relieved for a few hours by Carly's grandmothers.

The medical team meeting this afternoon didn't turn out to be that useful. The one thing we did learn from GI is that Carly's stomach biopsy indicated that she has gastritis. This can give intense abdominal pain and could very well be the issue that brought Carly to the hospital in the first place. Gastritis would not cause all of the symptoms that Carly has had, but it is possible that the pain from gastritis combined with the atypical anatomy in Carly's head as she heals from her last brain surgery could be behind all of these recent problems. She will have a brain MRI tomorrow and we will follow up with the neurology and neurosurgery team to see if any parts of her brain appear damaged. Hopefully a complete picture of what has been going on is not far away.

Love, Brad

Sweet Dreams

The last twenty four hours have been pretty good. Carly was uncomfortable overnight with some stomach pains as the barium from her lower GI flouroscopy passed through her. We still managed to get at least 3 or 4 hours of sleep which was a big improvement over the last several nights. Her discomfort ended with a good barium diaper this morning and since then she has been pretty calm. She even got a sponge bath and lotion massage that she seemed to like.

The results from the fluoroscopy were normal, like every other test that she has had over the last two and a half weeks. We feel torn because it is great to hear that things look normal, but at the same time Carly is not feeling normal and we need to get to the bottom of this. The list of tests that they can still perform is getting pretty small at this point. We are meeting with the attending doctors from all of the involved specialities tomorrow afternoon to try and make some sense of all of the data that they have now collected, and make a plan for what to investigate next. We are also going to attempt to feed Carly again tomorrow, something that has not gone well the other three times we have tried. If she manages to eat without having extreme pain later in the day it is possible that whatever she has may have run its course. That is all that we are wishing for and dreaming about tonight.

Love, Brad

Up All Night

Today was a busy day for Carly and us. Just before bed last night she pulled out the breath holding trick and it wasn't ending quickly on its own. The nurse hit the call button and the doctors came running and had her breathing again in less than a minute, but it took more time than that for her parents to get their breath back. The rest of the night was heavy on the fussing and feeling generally uncomfortable for Carly and light on the sleeping for all of us. Her pain never escalated to a serious level but we got a total of 30 minutes of sleep none the less. At 7:15 she headed down to the operating room for her endoscopy which took less than an hour. The GI specialist, another Dr. Gupta, said that Carly's esophagus, stomach and upper small intestine were "beautiful." Of course they are, was all I could think. Although they took biopsy's that will need a few days to return, she does not think that there are any issues with Carly's upper GI system.

After the upper GI was more or less ruled out they decided to run additional testing on her lower GI system with a gastrointestinal fluoroscopy. They gave Carly a slurry of barium through her NG tube while watching real time images of her stomach and intestines as it passed through her. They then followed up with hourly x-ray images that just ended at 10 pm. We will get a report tomorrow which should tell whether or not they could detect a problem with any other area of her GI system. The entire family is pretty sleepy, and I'm hoping that a quiet night awaits.

Love, Brad

Searching For Answers

Carly had a pretty restless night and we were up until 6am trying to help her get comfortable. Her discomfort wasn't nearly as intense as her worst episodes but she is clearly still not feeling great. In the late morning the intensity of her discomfort started to escalate and we were afraid it might get to the ten out of ten level that it has on four occasions here. With Christa rocking her and me patting her we were able to help a bit, but she finally needed extra medications which fortunately helped her to rest.

Every day we shake our heads in disbelief when we count up how many days we have been in here. We're up to seventeen days now which makes this our longest stay ever, and we still don't know what is hurting Carly. Tomorrow at 7:30am she is heading down to the operating room for an upper gastrointestinal endoscopy. Because she is so young she will be under general anesthesia as they explore down her mouth into her stomach and upper intestinal tract. The procedure is quick, taking less than an hour, and hopefully they can get a better idea as to what is causing Carly to hurt so much. Christa and I are both sensing that a turn for the better is coming Carly's way, hopefully that starts tonight and doesn't let up.

Love, Brad

Here's To Dads

Carly had a much better day today. She had several naps that were an hour or longer which is something that she hasn't really done in the last two weeks. When she wasn't napping she was much more alert than we have seen since we came to the PICU sixteen days ago and she looked intently at both Christa and me many times over the day. Under the circumstances that is the best father's day present that I could have hoped for. We will probably feed Carly again tomorrow or Tuesday to see if it sets of another episode like she had two nights ago. Without a diagnosis it is unknown how this will go, hopefully she can move on and leave those painful episodes behind her.

We are on a run of holidays in the PICU having spent Christmas, Carly's birthday, Easter, my birthday and now Father's day here on the 6th floor at UCSF. It is certainly not where I would choose to spend these days, seeing Carly put through so much is the hardest part about it. Although it is not the fate I would have chosen for any of us, I still feel incredibly lucky to have Carly in my life. She is an amazing force that brings the best out of everyone that she touches and the world is a brighter place with her in it.

There are a lot of amazing fathers in this world that I would like to pay tribute to. I was fortunate enough to learn from one of the best, a real role model of what it means to be a dad and a husband. I may not have the same level of patience, or the same need to get to the airport so early, but I couldn't have had a better teacher to prepare me for this life than my own father. Also, there are a lot of dads that I see here in the hospital who have to deal with tougher circumstances than we do and their devotion is inspiring. And finally there are many dads out there, including my good friend Chris, who have lost their children and have the unthinkable job of being a father to a spirit. These dads are every bit the father figure that I am or hope to be and through their grief, the love for their children is inextinguishable. Cheers to all the dads out there.

Love, Brad

Right Back Where We Started From

We were ready for Carly to turn the corner, but unfortunately she turned the wrong one. Around midnight last night she was pretty uncomfortable, but we were still hopeful that she would settle into a good night’s rest. By 1am her discomfort escalated and continued through the night. They used strong pain medications intended to give a few hours of relief, but for Carly it only lasted about 20 minutes. By morning she had a fever around 102 F, and all of the doctors were puzzled once again. The neurology team visited this morning with a few ideas of medications that may be able to help Carly be more comfortable. These were changed during the day and although they said it could take a few days to notice a change, Carly has done better this afternoon.

Last night was very similar to the episode that brought us into the ER two weeks ago making it feel like we are right back where we started. We are doing our best to deal with having no idea what is making Carly feel so bad and no idea how long it could last, but it isn’t easy. Late this afternoon Christa and I were sitting on a chair together looking out of Carly’s window at a grove of eucalyptus trees. The wind was whipping though the trees and I was reminded of the wind power that we felt the day before and during her last surgery. We could feel the love and prayers coming our way that day, and I can feel them again today.

Love, Brad

Love Will Get You Home

I was really hoping that I would be writing about the great day Carly had, but unfortunately she had a tough one. She has been very unhappy most of the day and is still uninterested in nursing. The PH levels in her stomach were much more acidic than expected considering she has been on protonics or prevacid (medications that reduce the creation of stomach acids) for the last two weeks. This could definitely cause some pain so she is getting an antacid and we will see if that can at least give her some relief. It is still very unclear what else could be bothering her, but it must be something pretty intense judging from the volume of her crying. It seems like Carly takes two steps forward and then one back (and occasionally two back.) This is frustrating at times, but any progress is one step closer to home.

You can usually judge how well Carly is doing when she is in the hospital by how far away Christa and I are comfortable going. Over the last two weeks we have only walked around the block once, otherwise we haven’t ventured farther than crossing the street to eat lunch. Our usual lunch spot does have an amazing view though and gazing out over the Pacific Ocean and San Francisco always helps us re-energize for another day We told Carly tonight that the time has come to turn the corner and we will double our efforts in sending her the healing strength that she needs. We know that we can count on Team Carly to do the same.

Love, Brad

Mysterious Ways

Carly finally had the good night that we were all hoping she would have. She stirred a little, but was mostly quiet and we all slept as well as a family of three can in a small PICU room full of flashing lights and intermittent alarms. The sweet taste of sleep left Christa and I both wanting more.

Carly had a giant thirty minute outburst to start the day, but since then she has been very quiet and rested peacefully for almost the entire day. She never roused enough to try to nurse, so hopefully she can take that step tomorrow. It is looking more and more likely that this trip will end up being an unsolved mystery. A virus of some sort is the most likely candidate, but even that is not a sure thing. There is a chance we will be moved out of the PICU tomorrow if a room opens up, and the last thing that stands between us and home is getting Carly to eat without excessive stomach irritation. If she can do that, and we have a way to manage any remaining pain/discomfort that she may be having, then there is little left for the medical team to investigate. Carly would be allowed to recover in the comfort of home, only to return if her mystery illness "presents itself" which is medicalese for "gets worse and they finally figure out what is wrong." Christa and I are pretty sure that whatever it is will have run its course soon and Carly will be able to get back on her healing path. We're feeling all the love and support up here on the hill at UCSF. Thank you!

Love, Brad

Lean On Me

Last night was not the easy, restful night that we were looking for and neither was today. Carly just could not settle down and she seemed to be aching all over, with only a little relief from the pain medications. Christa and I managed to get maybe four, thirty minute naps over the night so our sleep debt is pretty impressive by this point. All of Carly's vital signs and key blood labs still look good, so although she is being put through the wringer she is holding strong and will fight this off. They switched her to a different medication that they hope will help ease her pain and as of now she looks more comfortable than she has all day.

These last twelve days have been incredibly challenging. We had no idea what was in store for Carly and us when we ran up to the ER on that Saturday morning and we are continually reminded that you never know what will be thrown your way. Thinking about how we are facing these challenges as a family I was reminded of these redwoods that we walked past on one of Carly's healing walks in Muir Woods. Two giant trees growing from one base that managed to catch a falling tree many years ago. All three thrive together, the two older trees supporting the younger and the younger tree defying the odds.

Love, Brad

Sleepy Time Time

Carly likes to make things interesting. She had another bad night, keeping Christa and I up most of the time with a lot of wincing and crying. Twice in the night she decided to cry so hard she held her breath and started to turn blue. She broke this trick out a few more times during the day, including once for my parents, once when a friend of ours was visiting, and once when the PICU attending doctor was evaluating her. That is more drama than a mom and dad need and we really hope she leaves this new trick at the hospital when we go home. We crammed in some sleep from 4-7am and then it was time for the various doctors to start checking in on her.

Carly's day was a lot better. All of the lab results continue to come back negative and her diagnosis remains unknown. One of the residents here in the PICU said that although this is frustrating for everyone, it is also a good thing because they always start by testing for the most serious possibilities. Carly's stomach pain seemed to lessen today and they removed a line that was running into an artery in her right arm. That had to be annoying her and it is nice to have one less tube to deal with when picking her up. She had a slight 101 F (38.3 C) fever today but otherwise she seems like she may be starting to turn the corner. Tomorrow Christa will try to nurse her again to see if her stomach can handle milk and we're hopeful that she will continue to feel better by the minute. Carly looks peaceful in this photo I just took and we really hope that will last through the night.

Love, Brad

Let's Get The Show On The Road

Just before we went to bed last night, Christa and I made six wishes for each of the tiny stars above Carly’s head. I am not the expert on the rules and regulations of wishes, but I think it is ok to reveal your wish after it comes true. Both of us wished that her 10 hour diaphragm spasm (big hiccups) would end as our first wish and for our second wish we wanted Carly to have a peaceful night's rest. Both came true! The other four wishes can't be far behind, but I’m keeping those to myself.

Unfortunately Carly's day was not as pain-free as her night and we needed to give her each dose of pain medication as soon as it was allowed. The pain lasted for the majority of the day but the intensity was not as bad as yesterday morning so we are hopeful that this is a trend toward pain free days in the near future. There is still no diagnosis, although pancreatitis was basically ruled out. They have started Carly back on slow, 1 teaspoon (5 ml) per hour feedings through her NG tube and we will see over the night if her stomach can tolerate this.

There is a saying that Christa and I like: "Worry is a negative prayer." There is no better time to remember that than now when our days are full of things that could make us worry. Instead of going down that path, we try our best to focus on the positives of the day and send this energy to Carly. If you can all take a moment to visualize Carly as the perfect being that she is, and do so anytime that you may worry about her, I know it will help carry her through this ordeal.

Love, Brad

Wishing On A Star

Carly had another bad round of pain from 3am-11am today. We did all we could to comfort her, and finally found a different pain medication combination that brought her some relief. Somehow she picked up hiccup breathing as the pain peaked in the early hours of the morning and these have stuck with her all day. The poor little thing can't seem to shake them.

Carly had another abdomen CT-scan with contrast that would help the doctors identify if there are any hidden issues that did not show up on earlier scans. The preliminary report is that she looks normal. While that is a relief it also leaves us back where we were a week ago with no better idea as to what the root cause of the problem is. A friend brought us some small origami stars that she folded called wishing stars that we have arranged in a colorful rainbow above Carly's head. We are all wishing for peace and a full recovery for our little angel.

Love, Brad

We Can Work It Out

Carly's day was better than yesterday mostly because we stayed up on her pain medications, helping to keep it from getting out of hand. The pain is definitely still there but fortunately there is something that we can do to help her through it. We are no closer to a diagnosis than we were yesterday, but like I said before, an official diagnosis is secondary to Carly getting better. Her ventricular drain that was inserted last Sunday was removed today because they have finally ruled out increased cranial pressure as the problem. This means that she continues to manage her CSF without a shunt. She is down to only seven tubes and wires which is certainly moving in the right direction.

I can't tell you how much Christa and I appreciate the love and support that is coming our way. We have spent a lot of time in the PICU over the last nine months, but this trip ranks at or near the top in terms of stress. The power of Team Carly (all of you) gives us a lot of strength and is keeping Carly safe as she heals.

Love, Brad

Whoa Nellie

We thought we had Carly's pain under control when I posted here last night, but shortly after posting, it returned. By 3am the pain escalated so far that she actually stopped breathing and the PICU doctors rushed in and used an oxygen mask to give her some positive pressure. Thankfully that worked almost immediately. There are no words to describe how scary that was.

Carly's abdominal pain has continued today and there is still no clear diagnosis. The current thinking is that it is pancreatitis or a very strong viral infection of her gastro-intestinal system. The treatment for either of those is the same: rest your belly (no eating), give IV fluids and manage pain with a variety of medications. There are a few other possible diagnoses, but those two are the best bet at this time. We think we finally have the right combination of medications to help Carly with the pain. Her feedings will be held until Monday, when they will be slowly introduced again. For now we will try to enjoy our view of San Francisco, keep the healing tunes playing, and give every ounce of energy that we have to helping Carly move on to better things.

Love, Brad

Looking For Answers

Carly's pain returned again today. It started with a little whimpering early in the day and got pretty intense over the last few hours, finally ending when she got two doses of a very strong narcotic. It isn't easy seeing her go through such an ordeal and it is a relief to see her rocking gently in Christa's arms now. After ruling out so many possibilities over the last week it seems that the cause is gastro-intestinal related because the pain issues didn't start up again until she started eating. It is still puzzling though, because her abdomen exam didn't uncover anything and the pain is too intense to simply be gas related. We're directing all of our energy toward helping Carly have a restful night and a pain free Friday.

Love, Brad

Steady As She Goes

Carly had another quiet day today. Although we would like to see her awake and smiling, it is a huge relief to see her so peaceful and pain free. Results from a variety of tests continue to come in and all have been negative so far (in this case negative is a good thing.) She still has a LOT of tubes and wires attached to her, twenty nine to be exact. This made it a little tricky moving her from her bed to Christa's lap, but as you can imagine it was worth it for both mom and daughter. Feedings have begun through a nasal-gastric (NG) tube which should be making her belly happy and hopefully will give her the energy she needs to take the next steps in her recovery.

Love, Brad

The Right Direction

Carly was taken off the ventilator this morning and is now breathing on her own. It is great to see her cute little mouth and cheeks that were hidden behind tape and tubing. She is starting to move around a little bit but still slept for all but a few minutes today. She has now gone over two days without a pain episode and we are hopeful that as she becomes more alert and starts eating tomorrow she will continue to be pain free. There is still no clear diagnosis for her and there is a possibilty that we will go home without one. We aren't too concerned about the diagnosis as long as Carly feels good and stays that way. We can feel the love from all of you helplng to carry us through these trying days, thank you!

Love, Brad

Many Questions, Few Answers

Carly made it through the day without a painful episode which was a big relief. She is still on a ventilator and slept for all but a few minutes of the day and she continues to sleep now. The cause of all of these issues is still a mystery, and specialists from nearly every discipline came to visit today. Carly is very popular around here.

If she has a good night they will take her off the ventilator tomorrow morning and hopefully let her try to eat. She hasn't eaten anything since Friday night so I'm sure she must be hungry. They will want to observe her for at least another day, but we haven't thought further ahead than that. One of Carly's nurses said it best today when she said "She looks like an angel." There's no question about that.

Love, Brad

High And Low

Carly's belly CT scan last night did not show any issues with her intestines or bowel, meaning that there wasn't any type of mechanical interference causing her pain. This was good news in that she would not need surgery, but her diagnosis remains a big question. She had a great night and rested peacefully and we were hoping that her cycle of pain was over. Unfortunately around 8am an episode began again and it lasted over three hours. Her temperature got very high and we basically found ourselves in the same situation as yesterday morning. They tried using a variety of pain medications to help her but nothing seemed to do the trick. In the end they put her back on a ventilator which allowed them to use stronger medications without worrying about her maintaining her breathing.

The team here at UCSF is still pretty stumped as to what is happening with Carly. They ran many tests today for a variety of possibilities and besides some signs that indicate a possible virus or infection, everything is looking pretty normal. There is still a chance that Carly simply has a very strong intestinal virus that is causing a cascade of issues. If this is the case she will need to ride it out and it will resolve on its own. They will run several additional tests tonight and tomorrow to help them narrow the possibilities and hopefully we will have a clearer picture soon. We appreciate all of the support that you are sending our way, it is a big help for Christa, Carly and me.

Love,

Brad

Unexpected

Carly's fussiness took a turn for the worse overnight and she woke up around 4 am in a lot of pain. We noticed that she had a slight fever so we gave her a hydrocortisone shot, something that we have been instructed to do anytime she has a fever. By 6 am she stopped yelling but she seemed very out of it so we ran her up to the emergency room. When they checked her temperature during admission it was up to 106.1 F and her heart rate was up to 230 ( it is normally closer to 120.) A group of 15 or more doctors and nurses rushed into action and they were able to get her stabilized. She was admitted back into the PICU, an all too familiar place for all of us, and she is now resting.

At this point they have been able to rule out the most serious issues that could have led to this. Neurological issues related to her resected tumor and shunt are not the culprit this time, and it is looking like it is probably related to some type of GI issue. She will have a stomach CT-scan this evening to see if there are any intestinal complications, otherwise it could possibly be a stomach virus that combined with her panhypopituitarism pushed her body too hard. It is a relief to see her feeling so much better already, and we’re hopeful that she will be able to get out of here in just a few days.

Love, Brad

Don't Cry My Little Darlin'

Carly hasn't had the best week. Early in the week she started waking up screaming in the middle of the night and it took several hours to totally settle her down. This has kept up every night since and now happens several times during the day as well. She was upset enough on Wednesday to be taken up to urgent care for an exam. The trick is that it could be normal kid issues like teething or stomach pain, it could be an endocrine issue due to her panhypopituitarism or it could be a neurological issue. Because there are so many possibilities the urgent care visit took most of the day for head and abdomen ultrasounds, blood labs, urine tests and more. Fortunately all of the test results looked normal and Carly was sent home, but she is still clearly not feeling well. We are thankful that it wasn't something serious enough to land back in the hospital again, but it is still sad to see Carly in pain. Hopefully whatever it is passes in a few days, in the meantime we will cuddle her and give her all the love we can.

Love, Brad

Giggles

Carly celebrated eight weeks of tumor free living this weekend and had a good week of slow but steady progress. Her neck is getting stronger and she can hold her head up for several minutes now (a long way from not being able to hold it up at all.) She spent more time in her glasses this week and although it isn't easy to tell if she likes them yet, she doesn't complain about wearing them. There are a growing number of times each day when Carly seems to really "turn on" and is very attentive and present. During one of these times tonight she was intently looking at me and after tickling her chin she giggled and smiled and kicked her legs up in the air. It was one of the cutest things I have seen, and such great progress. She is an amazing little miracle.

Heads Up

Carly's progress continues to be slow and steady. I have never been the most patient person in the world so it isn't always easy to wait, but we have made a point of writing down all of the new things she does each day and the list is getting longer. In the last week her neck strength has gotten a lot better and she can now hold up her head for minutes at a time while Christa slowly rocks her from side to side. She is still managing without her shunt, her electrolyte levels continue to be normal and her blood labs are now only required every two weeks. That's a long way from the three times a week testing that was required only a few weeks ago. She has also started making a few cute talking sounds in the last few days. I'm pretty sure she is trying to say dad or brad, but Christa isn't convinced.

Love, Brad

Of The Trees

Today we are planting a tree in Carly's Garden in memory of Silas Orion Gallagher. Our friends, Chris and Lani, will be commemorating their sons brief life with a tree-planting ceremony at a park near their home in New Haven, CT. Please take a moment to think of Silas, whose name means "of the trees" and send his wonderful parents strength and love today and everyday.

http://elmcitydad.wordpress.com/silas-orion-gallagher/

The Future's So Bright, She's Gotta Wear Shades

Carly got her first pair of glasses today and she doesn't protest too much about wearing them. They have a little bit of tint to help her with the bright sunshine and the strong prescription is intended to enable the visual cortex of her brain to develop while allowing her eyes to do less work. As she progresses the prescription will be reduced, and eventually she may not need glasses at all.

She has made some great strides in the last week, acting a lot more alert and spending up to an hour awake at a time. Her physical therapy is going well and she can now hold up her head on her own for several minutes. She continues to manage her cerebrospinal fluid too, so the shunt remains disconnected. All of these things are little steps along her path of recovery and each step brightens our day.

Love, Brad

Thankful For Moms Everyday

Reflecting on the moms in my life today, I realize just how lucky Carly and I are. My mom has been an amazing help over the last eight months. For both of Carly's major surgeries she put the rest of her life on hold and moved to San Francisco for a month each time. As Christa and I spent weeks on end at the hospital she delivered home cooked meals and anything else that we may have needed. Christa's mom has helped us out so many times I have lost count. She lives about 30 miles away and has watched Carly anytime that Christa and I need some time to ourselves or with our friends. (Not to mention the countless trips to the hospital for support or to deliver hypoallergenic diapers for Carly.) We are blessed to have both of these wonderful women watching over us.

I feel particularly blessed to have the most amazing woman as my wife and Carly's mom. I have to admit that when we were dating and I decided to ask Christa to marry me, the type of mom she would be was something that never crossed my mind. (Kids were not on my mind then.) Well, I won the mom lottery. Over the last eight months Christa has had to deal with more than any mom should, and she has dealt with it with so much strength. She has put her professional life on hold to care for Carly and she manages to do it all with a smile. Her love and patience are endless and they are guiding Carly on her path to recovery. Carly and I couldn't be any luckier.

Love, Brad

Baby Steps

Carly continues to get a little stronger each day. She is still pretty tired and spends most of the day sleeping, but during her awake times she is showing improvement. Her right eye can now open almost as wide as her left and she is holding up her head more. To help her right eye get stronger we are starting to patch her left eye for 30 minutes a day giving righty some time to be in charge. Carly's ophthalmologist has also recommended that she start wearing glasses which should aid her vision development. Her first pair of glasses will be tinted to help her deal with the bright outdoors since her pupils are still dilated at all times. She should look pretty cute in her new sunglasses!

Carly had her first post surgery checkup with the endocrinology team yesterday. It was a pretty uneventful appointment and all of her hormone medications remain unchanged. Since Carly lost her pituitary gland during her surgery we will be working very closely with this team in the coming years. The pituitary gland is responsible for producing or controlling many of the body's hormones including:

• growth hormone
• thyroid hormone - which helps control heart rate, temperature and metabolism
  
• ADH - which controls your sodium level by telling your kidneys to hold on to water and stop peeing
• ACTH - which triggers your adrenal glands to release cortisol to control blood sugar and blood pressure levels
  
• estrogen
• progesterone
• oxytocin

Yes, it's a long list. Carly will need all of these hormones to be managed with medications for the rest of her life, some with shots and some with pills. Fortunately this can be done and the endocrine team at UCSF is among the best in the world. We have been replacing several of these hormones since Carly's first surgery in October and we are comfortable managing them and know that Carly will be able to handle it too. I already checked, and none of this would prohibit her from running a marathon or finishing the Ironman. :)

Love, Brad

Team Carly

Team Carly was out in force yesterday for the Brain Tumor Walk in Golden Gate Park. It was a bit soggy with on and off rain, but it didn't dampen the spirits of the team. In just over two weeks Team Carly raised over $11,000 finishing 5th in fundraising out of over 200 teams. Forty people walked for the team and over 140 people donated to the cause! Thank you all!

Since Carly's diagnosis on September 12, 2008, we have been blessed with support from all of you who are a part of Carly's team. Team Carly is a group of people who believe in the healing power of love. We are a group who choose hope over fear and believe that tomorrow will be a better day for a little warrior named Carly. The team stretches from Switzerland, France and other points in Europe, spans the entire United States from the east coast groupies through the midwest heartland to the west coast family and reaches points in Japan and throughout Asia. The power of this team has brought calm to Christa and I in trying times and continues to help Carly each day on her road to recovery.

Love, Brad

Checkup From The Neck Up

Carly had a checkup with Dr. Gupta today and he is happy with her progress. Her head ultrasound showed that her ventricles have not gotten bigger, meaning that for now she is still managing without a shunt. It will be some time before we can officially cross hydrocephalus off of the list of conditions that Carly will have to live with, but this is a great sign. She continues to be very sleepy, sometimes falling asleep in between bites when eating solid foods (which as you can imagine is pretty cute.) Dr. Gupta said that this is still not unusual, and that it was a good sign that she continues to show little improvements during the periods that she is awake. Both her moments asleep and awake are a blessing, and Christa and I are thankful for Carly's incredible strength every day.

Love, Brad

Our Cute Little Monkey

Carly has been enjoying her time out of the hospital. Her electrolyte levels have been perfect all week, earning her a three day break from blood labs. Her fontanel remains nice and sunken too, a good sign that she is managing her cerebral spinal fluid on her own. She will have a head ultrasound and check-up with Dr. Gupta on Monday for an official progress report. She is still very sleepy, spending most of the day asleep but this is still normal only three weeks after such an extensive surgery. She is also still working on getting her right eye to open all the way, but her ophthalmologist is certain that it is only a matter of time before that fully heals too.

Next Saturday, May 2, the National Brain Tumor Society is having a walk in Golden Gate Park to raise money for brain tumor research and support. Christa's sister has formed a team for Carly and we will all take part in the festivities (hopefully the warm weather returns by then.) We want to thank everyone who has already joined in, and spread the word that the last day to register for the walk is next Wednesday. If you are in the Bay Area and can join us for the walk or if you would like to donate to the cause just click here.

Love, Brad

No Place Like It

Carly was discharged this afternoon and we are back at home. The warm sun felt good to all of us on the victory walk from the hospital and our sofa has never felt so comfortable. Carly even gave her (now customary) smile as we turned the corner from the hospital and headed downhill toward our house. After a few weeks of sleeping in the PICU, we all should get a good nights rest in the comfort of our own beds.

Carly will have daily blood checks over the coming week to monitor her electrolytes and she will have a head ultrasound in a week to see how she is managing without a shunt. She is still very tired and will need to work hard to get back to 100% but she is a tough little cookie and up to the task. Thanks for all of the support which has helped us get this far, we will continue to draw on it as we start the next chapter in Carly's recovery.

Love, Brad

Mighty Little c

Carly continues to make small steps in the right direction each day. We are still in the PICU, a requirement for patients who have an external ventricular drain. Neurosurgery has been weening Carly off this drain over the last several days and it has been clamped since last night. Since the clamping, Carly has been handling her cerebrospinal fluid on her own without the need for a shunt or external drain. She will have a CT scan tomorrow morning and if everything looks good the drain will come out. Carly's shunt will stay in place, though turned off, for several months to see if she can manage without it in the long run.

Carly is still pretty quiet, mostly sleeping and spending a few hours a day awake. She can move both arms and legs and her right eye is starting to open wider, something that it didn't do for the first few days after her surgery. This is all expected for someone who went through what one of the attending doctors called "an extreme surgery." He also said that in his 34 years at UCSF he has never seen such a large tumor in someone so small (and he isn't the first to tell us this.) She really is a little miracle, and she hasn't lost an ounce of the fight that has gotten her this far. The entire medical team is really pleased with her progress and soon we can start focusing on physical therapy, hopefully from the comfort of our home.

Love, Brad