Cheers

Carly has made some big strides in the last few weeks, and she still continues to have some challenges.  The good news starts with her shunt, which continues to work as it should. It is a relief to have it last longer than the last few, and hopefully it keeps it up. The other great news is that Carly has finally learned how to drink from a bottle and she was officially weened from nursing yesterday.  Until recently the only way Carly could take in any fluid was from nursing. We tried every bottle and sippy cup that we could find but never found anything that Carly would accept.  Everything came together about six weeks ago when Christa finally found the right bottle and method, and Carly was finally ready to make the big step. This is a giant step for Carly, and it makes it possible for others (including me) to help manage Carly’s fluid intake. It is something that we are very thankful for.

The biggest challenge right now continues to be seizures.  Carly started on a seizure medication about four weeks ago and we have slowly increased the dose. Her seizures did drop from six a day to two a day, but now she is sticking around 2-3 a day and the medication seems to make Carly more sleepy and agitated at this dose.  We will see how things go over the next few days, but it is looking like we will need to move onto another medication. The other issue that Carly is dealing with is a round of pneumonia.  It is not serious and definitely much less concerning than the seizures, but she is pretty congested and had several nights when she had trouble sleeping.  It seems to be clearing up now, and in the grand scheme of things it is a minor issue. One thing is for sure, she is a very strong little girl.

Love, Brad

Mino'aka

Carly's newest shunt appears to be working, but her seizures continue to stick around. During the last few weeks we have made a few changes to the flow settings on her shunt (a simple and painless 30 second procedure) in the hope that it would help alleviate the seizures but we have not found a fix yet. We decided that a trip to Hawaii might be just the trick to help her, or at the very least help us recharge, so on November the 5th we headed to the Big Island for 10 days of fun in the sun.

Carly enjoyed her relaxing days on the beach, and she definitely liked eating fresh bananas (picked from our own tree,) pineapple and papaya.  We got home late last night after a great trip but the seizures are sticking around, occuring 5-6 times a day now. We are following up with neurosurgery and neurology at UCSF as well as some second opinions in hopes of finding a way to help Carly past this hurdle. We'll keep praying for, and envisioning, an end to these episodes and peaceful days ahead for Carly.

Love, Brad

Lucky Number Twelve

Carly had her fastest shunt surgery yet. Dr. Gupta found a clog in the ventricular catheter, but the rest of the shunt was working normally. This meant that she was able to avoid a belly incision this time, which is often the most tender area. She has eaten well since the surgery, and although she is a bit uncomfortable it is looking like she may be able to settle down for some sleep. We will be heading home tomorrow and will be hoping that things keep flowing through number twelve. Thanks for all of your love and support.

Love, Brad

Made To Last

Carly is heading back to the OR tomorrow for shunt number twelve.  Her surgery is scheduled to begin around 2pm, and we will be spending the night up at UCSF after her procedure. If there are no complications we should be able to go home Thursday, and hopefully lucky #12 lasts longer than the rest.

Love, Brad

Searching For The Right Shunt

Carly’s recovery from her last surgery went very well and she was back to her smiling self pretty quickly.  This good run was pretty short lived though, as the same symptoms that we saw before the shunt revision started to come back just over a week after the surgery. Her seizures have returned and she has moments each day where we can just tell that she isn’t feeling well, with the likely cause being high intra-cranial pressure. Fortunately she still has many good moments each day, but it is looking like shunt number eleven is not working as well as it needs too.  Neurosurgery has adjusted the shunt to flow more easily, but so far that has not seemed to have any noticeable effect.  They have also tapped the shunt to see if an infection could be causing the clogging.  All of the early results from the cultures do not show an infection which is good.  There is one possible infection type that takes many days to show up in a culture so we have to wait until tomorrow to know if that type can be ruled out.  If the cultures look good, and her symptoms continue, she will most likely have another shunt revision surgery early next week.  Neurosurgery told us that they sometimes have cases like Carly where it takes numerous shunt revision surgeries to deal with clogging issues, but they assured us that eventually the shunts start to last. Hopefully Carly is near that point. You can help by visualizing her brain in a perfect state, with no problems from pressure.

Love, Brad

Eleven

Carly made it through another surgery with flying colors. The procedure lasted about two hours, and Dr. Gupta replaced all of the shunt hardware. He was able to see a clog in end of the peritoneal catheter that was preventing the old shunt from working properly. It was a relief to hear that the shunt was malfunctioning and that our call to replace it was the right one. Carly is resting now, and has already eaten once since the surgery. She is in some pain, as usual with these procedures, but we are hoping for a quick and easy recovery for her.

Love, Brad

Back To The OR

Soon after my last post, Carly's seizures returned. At first she was having one a day, then it went up to three a day and stayed at the level.  We were hoping that the seizures would go away on their own, but after three weeks they are still hanging around. On top of the seizures, Carly has just not seemed quite like herself and seems to be slowly feeling worse. She is still smiling during the day and eating pretty well, but we have had the feeling that shunt number ten was on the way out. Carly had several tests last week to rule out other causes, and nothing obvious has come up. Since things are not clearing up on their own, she will be having a shunt replacement surgery tomorrow afternoon.  We're hoping that her positive progress can get back on track quickly with shunt number eleven.

Love, Brad

Summer Fun

I have been neglecting the blog for too long, but the good news is that we have been busy with fun things and Carly has been doing well this last month.  After  making it through another extended recovery period from her shunt surgery in July, Carly has been making great strides. She was able to travel to Douglas lake in Northern Michigan where we spent almost two weeks relaxing on the lake. Carly got to visit with all of her midwest family including her grandparents (Tutu and Papa), aunts, uncles, cousins of all ages, great aunts and uncles and close friends that have been like family to me since I was a kid.  It was a welcome trip for all of the family.

Carly is smiling and laughing more than ever, lighting up with the cutest smiles you have ever seen whenever we sing to her or give her kisses on her cheeks and chin. She is also eating a LOT more than she has in the last year.  She will now eat a jar of food in one sitting that would have taken her over a day just a month ago.  She is starting to learn how to drink from a cup, with thick liquids like a fruit smoothie coming first and thinner fluids like milk and juice as the next step. All of this new found hunger means the growth hormone is starting to kick in, and Carly has shot up over 1.5 inches in the last month. Her doctors and therapists have been encouraged by how she is looking lately, and we hope to keep this momentum up!

Love, Brad

Recovery

Carly was discharged from the hospital yesterday afternoon and we were able to spend last night at home. It’s always a relief to walk out of the hospital and head down Parnassus St. towards our house, but we also knew that Carly had some recovery work ahead of her. The recovery from the last shunt surgery took her over a week and we were hoping that this round would be a bit easier on her.  Last night and this morning were not great and she wasn’t able to rest, but fortunately she started to settle down this afternoon and she finally took a long nap. We’re hopeful that this trend will continue and we will all catch up on some sleep tonight.

Love, Brad

A Perfect Ten

Carly's surgery took three and a half hours, and after a few hours in recovery we are back in our room on the 6th floor. The surgery went well and Dr. Auguste replaced the shunt valve and the catheter that runs into her belly. He said that the old catheter was clearly clogged and once it was replaced the shunt flowed well and relieved the pressure on her brain. The recovery from Carly's last shunt was a bit rocky for her, so now we are just hoping that the next few days are uneventful and if all goes well we will be on our way home tomorrow.

Love, Brad

Good Times, Bad Times

Over the last week or so Carly has started to show the high pressure signs that we are all too familiar with. We have been fairly certain these signs meant that her shunt was starting to clog again and now another shunt revision surgery in on the way.  The operating room schedule has been very busy this week, with no available times for Carly, so she will be admitted to the hospital tomorrow so that the surgery can be scheduled for Saturday.

There is some good news too. Last week Carly had her quarterly MRI to monitor her ventricle size and ensure that she remains tumor free.  Although the ventricles did look a bit bigger (verifying that the shunt was not functioning properly) the MRI also indicated that Carly remains tumor free. We got another good piece of news regarding the protein content in Carly’s CSF. Over the last few months this level has been very high, nearly 30 times the normal level. Dr. Gupta told us that when this level is so high they typically see a lot of shunt clogging issues as the protein causes buildup in the shunt catheter. When neurosurgery was investigating Carly’s shunt function this week, they tested this level again and it has dropped by ⅔.  It is still 10 times the normal level, but the downward trend hopefully means that soon she will not have to deal with frequently clogging shunts. We are hopeful that shunt number ten will be around for a long time.

Love, Brad

Having A Good Time!

Carly did better then we could have imagined at the High Sierra Music Festival last Thursday through Monday. She was all smiles within minutes of our arrival and she continued to smile throughout the weekend. The RV that we rented was perfect, allowing Carly to sleep well each night and giving her some escape from the warm days. Getting to spend time with so many of our friends, dancing the days and nights away, was all that Christa and I had hoped it would be. Carly is definitely a music lover and I am sure she is already counting the days until her next festival. I know we are!

Love, Brad

More festival pictures can be found here.

Quincy Bound

The shunt adjustment and all of the good wishes from Team Carly are doing the trick and Carly is doing much better than just two days ago. She slept well through the night and has treated us to a few smiles which we read as “take me to the festival!”  As always, thanks for keeping Carly in your thoughts and prayers, her strength and the effect of all of you lifting her up never fails to amaze me.

Love,  Brad

We Need A Festival Miracle

The fourth of July is quickly approaching and we have been cautiously anticipating a trip to the High Sierra Music festival for many months.  Spending the 4th weekend at High Sierra, dancing away the day and night in the foothills of the Sierra Nevada Mountains has been a tradition of ours for over 12 years with Carly attending her first festival when she was just 5 months old. We missed the festival last year when Carly wasn’t doing well, but after three good weeks in a row it was looking like it was going to happen for us all this year.

Unfortunately, as we know too well, life can take an unexpected turn at any moment and for Carly that turn was a few days ago.  Christa and I noticed that she seemed a little “off” and we were both a little concerned that her shunt was not functioning properly.  Last night and this morning she was particularly uncomfortable and we realized that Carly was clearly suffering from high intracranial pressure. There are two possibilities, either she is on the edge with her current shunt setting and simply needs a lower setting or the shunt is clogged once again. Fortunately changing the setting is a fast and painless process that takes about a minute, so the neurosurgery nurse practitioner made the change earlier today. At this point all we can do is wait and see if the change gives Carly the relief that she deserves, and if we get that answer by Wednesday morning we can head up to the festival as planned. Of course a festival is secondary to Carly’s well being, but some sunshine, mountain air, music and good friends would be a wonderful healing time for all three of us. Let’s hope this unexpected path makes a turn for the better soon.

Love, Brad

Smiles All Around

Carly has been doing very well the last two weeks which was a great way to head into father’s day weekend. Since her shunt was adjusted she has been much more comfortable and has been smiling more each day. We have been keeping a daily smile count and many of the days last week she topped 25 smiles in a day. Yesterday she hit a personal record of 51 smiles and every single one brightened our day. After going several months with no smiles at all this is a trend that we are thrilled to see.  As we ate brunch today, sitting in the sun drinking a french wine called “Whispering Angels”, I couldn’t help but think that these whispers were behind some of those smiles.

Love, Brad

Calmer Days

Carly’s weekend was definitely better than her Friday. Saturday morning she was finally comfortable enough to get in her stroller and walk around the neighborhood for a little while. This is usually one of her favorite things and it was a big relief to finally see her sleeping comfortably.  A bigger surprise came later in the day when we decided to try and take Carly to a bbq graduation party in Golden Gate Park. We weren’t even sure if Carly would be able to make it there let alone stay for more than 15 minutes, but in the end she rested peacefully for nearly two hours while we got to catch up with some of our closest friends. That was an amazing gift. She is still cycling in and out of discomfort and it is hard to tell what all of the issues are.  It will take several days before we will know if she is truly on her way to recovery, but any improvement is a relief. I know that the Team Carly boost must be helping, thanks.

Love, Brad

Puzzled

It has not been an easy week for Carly. She has continued to be very uncomfortable and restless, only sleeping well for two out of the last seven nights.  It is a tricky puzzle to figure out, which is saying a lot for the princess of tricky puzzles. One possibility is that she is having trouble adjusting to her lower cranial pressure now that her shunt is working. While the pressure may be appropriate, it could be that she became accustom to a higher pressure when she had a clogged shunt. After giving her a week to adjust without any success, neurosurgery adjusted the shunt up one setting to see if that can give her some relief. They are also running blood and urine tests to rule out an infection and preliminary results are looking clear. She could definitely use a little boost of strength from Team Carly as she makes her way past this most recent hurdle.  Thanks for keeping her in your thoughts.

Love, Brad

Sleepless In San Francisco

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

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

Love, Brad

Neuf Said

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

Love,

Brad

Number Nine

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

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

Love, Brad

Strawberry Shortcake

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

Love, Brad

Love To All The Moms Out There

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

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

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

I couldn’t agree more.

Love, Brad

What A Team

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

Love, Brad and Christa

Looking Better

Things settled down quite a bit for Carly near the end of last week and over this weekend. We were definitely worried that she was on her way toward a shunt revision, but her symptoms have improved and she is much more comfortable now.  On Thursday she smiled at least six times, which is more than we have seen in a single day in a really long time and she is looking like she feels better.  Her blood cell counts will be checked tomorrow to see how her pancytopenia is progressing, and we will continue to keep a close eye on her to make sure her shunt continues to work. I am sure all of the love and prayers that are coming her way are helping her though this.

Love, Brad

Keep It Flowing

There haven't been too many changes over the last week. The best news is that Carly's cell counts have stayed pretty stable since her platelet transfusion last Wednesday. A check today showed that both her red and white blood cell counts have gone up, and although her platelet count has gone down a bit it hasn't been a rapid drop. The shunt tap last Wednesday showed that the protein content in Carly's CSF has not gone down over the last few weeks, and it could take several months to normalize. Unfortunately one potential complication from high CSF protein levels is shunt blockage. Carly has continued to be pretty uncomfortable over the last week, and the signs look a little bit like those that we have seen with previous shunt failures. We will be in contact with Dr. Gupta over the next few days to determine if a shunt function study is needed, and if her symptoms worsen he may opt for a shunt revision surgery without the study. Through it all Carly remains a sweet and adorable little fighter.

Love, Brad

Limited Access

Carly's platelet count slowly decreased over the last week and she finally got to the point that she needed another transfusion today. It has been two weeks since her last platelet transfusion, and the fact that she was able to last that long is encouraging that her bone marrow is doing some work. The transfusion itself was straightforward, however getting IV access was a big challenge as usual. It took many needle pokes, but the nurses were finally able to get an IV in and Carly got her platelets and some IV fluids. Once her platelet count was back to a safe level neurosurgery tapped her shunt again to see how the protein level is trending to determine if any additional treatment is necessary. We should have the results from that test tomorrow. Carly is still pretty uncomfortable, but we are hopeful that some answers will reveal themselves in the next few days. Of course, we are more than happy to have no answers as long as Carly starts to feel better. As always, your love and support is uplifting for Carly, Christa and I.

Love, Brad

Wait And See

Carly's blood labs looked more stable than expected, so we are holding off on the chest port for now. Her platelet count did go down again but not as quickly as it would have if she were not producing any on her own, so it is a good sign that her bone morrow is doing some work. The full biopsy results are still pending and Carly will have another blood lab on Monday to see how she is progressing.

Carly started to show some signs yesterday that we have seen before when her shunt has started to fail. She is uncomfortable and rocking her head a lot and yesterday she wasn't very interested in eating. We were afraid that the night would be worse and that we may have to go in today for a shunt study, but she had a good nights sleep and is eating pretty well this morning. She is still very uncomfortable, but we will keep a close eye on her and hold off on the shunt study for now.


Love, Brad

One Day At A Time

Carly has been a bit uncomfortable over the last few days, but she has been able to steer clear of the hospital for now. Her labs on Monday showed that her platelet levels are slowly going down again, but not as quickly as the hematology team thought possible. Carly will have another check on Friday and if the cell levels are deteriorating quickly she will have surgery that afternoon to place the chest port. If the levels have stabilized we may put that surgery on hold.

We met with the endocrinology team today for Carly's one year tumor free check-up and to discuss growth hormone replacement. Based on Carly's last MRI Dr. Lustig is comfortable beginning this treatment, but he wants to wait until Carly's recent blood issues have settled out.  It may take a few months, but we should be able to start her growth hormone replacement shortly. Thank you for keeping Carly in your thoughts and surrounded by healing energy.

Love, Brad

Happy Easter

It was wonderful getting to spend Easter and my birthday at home, rather than in the hospital. Carly is feeling a little better today and she even managed to smile three times, which was the best birthday present I could ask for. She will have some blood labs tomorrow to check her progress and we'll be sure to let you all know how that goes. 

Love, Brad

Back Home Again

Carly’s blood counts looked a lot better today after her transfusion, enough so that they were willing to let us go home. I did not expect that we would be discharged this soon, but the hematology team thought that we could care for Carly at home while we wait to see how her body responds over the coming days.  Carly will need to have her blood checked on Monday and if her cells are deteriorating quickly we will be admitted back to the hospital, but the time will be a lot more restorative for all of us at home.

We are planning to have a chest port placed in Carly at some point this week when pediatric surgery has available OR time.  The port will be a small bump under her skin on her chest and it will provide a spot to draw blood and administer fluids, blood products and medications when needed.  There have been so many problems getting IV access in Carly over the last year that this will be a big help, and should she need many blood transfusions over the coming weeks the port will make the process much easier on Carly. It always feel great to get home, and we can feel the support of Team Carly lifting us up.

Love, Brad

Strong Willed Women

Carly's bone marrow biopsy went smoothly without any complications. The preliminary results came back quickly and she does not have leukemia which is a big relief. The results were not normal though, her marrow showing almost no sign of any cell production. There is no clear explanation for this and once again Carly has the team here at UCSF guessing. It will be a few days until more detailed results from the biopsy are available, but they may not provide an answer either.

The running theory is that a virus is affecting Carly's bone marrow and the marrow may have been further compromised by a seizure medication that Carly took a few months ago. Carly is getting a blood transfusion now to bring her blood cell levels back up to normal range and they will check again tomorrow to see if the cell levels are stable. If they are, and if Carly is doing well otherwise and maintaining her blood oxygen levels without the nasal cannula that she is using now, then we may be allowed to go home.  Carly will need to have her blood levels closely monitored for several weeks and she will probably need to have some transfusions along the way to keep the levels where they need to be.  Hopefully her bone marrow will rebound on its own and we will be able put this one behind us.

On the seizure front Carly only had one today which is an improvement from the six she had yesterday. There is still no explanation for them, but the stress that Carly's body has been under is enough to bring them back. We continue to hope that these too fade away once Carly is feeling more like herself.

I feel like there is an extra strong presence watching over Carly tonight, as my grandmother "Grammy" passed away today.  Grammy was 97 and she was an incredibly strong woman, fighting for these last weeks and defying all expectations down to the very end. She was ready to go, and I am thankful that she went peacefully while my parents kept her company.  It is no question where Carly got some of her fighting spirit. I won't forget the look on Grammy's face when she first held Carly, and I know she is keeping an eye on Carly now.

Love, Brad 

No Fooling

We had a pretty late night at the hospital yesterday, but after many attempts they were finally able to get an IV into Carly to give a transfusion of platelets to bring this level back into normal range.  A chest x-ray showed that Carly has what looks like a little pneumonia so they also started antibiotics late in the night.  We squeezed in a few hours of sleep in the room with her and Carly was finally able to get some rest herself.

Today has brought many new questions. Carly’s blood labs have shown that her bone marrow is not making enough blood cells or platelets. This can be a result of a number of viruses and if that is the case Carly’s body will just need some time to fight off the virus. The other possibility, which the oncology team sees as very unlikely, is that she has leukemia. They believe that this is probably not the case, but due to the severity of this disease they will perform a bone marrow biopsy tomorrow afternoon to verify that this is not the cause of her blood cell issues.  Carly will need to be under anesthesia for the biopsy but the procedure only takes a few minutes and we should get preliminary results pretty quickly. 

The last issue of the day is the return of Carly’s seizures.  She had been seizure free since December, but early this morning she had a short episode and she has had a few more over the course of the day.  We had hoped that we had put them behind us for good, but because Carly’s body is under a lot of stress she is susceptible to a recurrence. There are a lot of potential explanations for the seizures and as of now we are waiting for Carly to feel more like herself to see if the seizures just fade away with the other symptoms. Carly is a strong little fighter and she is surrounded by love and I am confident that she will overcome these new obstacles. Thanks for your continued love and support.

Love, Brad

Time Says "Go Back To The Hospital"

The cultures from Carly's CSF continue to look good and there does not seem to be any sign of infection in her brain.  While that is a very good thing, Carly has become increasingly uncomfortable over the last few days which had us concerned. Christa brought her in for some additional blood tests earlier today and the results showed that her platelet levels were very low.  As is typical for Carly it is a bit of a mystery what is going on, but she was admitted back into the hospital and will be getting a transfusion tonight to bring her platelet levels back to normal.  They will also run several tests to see if there is an infection somewhere else that could be causing this problem and hopefully we will have some answers tomorrow. Thanks for keeping our little c in your thoughts.

Love, Brad

Time Will Tell

Carly's MRI on Thursday went pretty smoothly.  She took a little while to wake up from her anesthesia but once she stirred she was ready to head home.  The initial results did not show any signs of tumor which is a big relief.  The radiologists did note some enhancement of her ventricles which was not expected.  This could be an indicator of an infection or inflammation of this area of her brain, but it could also be nothing at all.  To rule out infection and inflammation, neurosurgery tapped Carly's shunt yesterday to get a sample of her cerebral spinal fluid which they are culturing now.  The initial results after 24 hours did not show any signs of infection or inflammation which was great to hear.  The lab will continue to culture her CSF for the next 5-7 days, but with good results so far we are hopeful that there will be no issues.

Love, Brad

Mountain Air

Carly’s slow but steady progress has continued over the last few weeks. She is spending more time awake, some days for many hours in a row, which is a great change to see. She particularly likes to spend time swinging both at home in San Francisco and this week in Tahoe where we are spending a little vacation time. This Thursday she will have an MRI for her one year post tumor check-up. Should it confirm that she is still tumor free, then she will be able to start growth hormone replacement in the next few weeks. We will learn more about that at an April 7 endocrine appointment, but that can only mean good things for Carly’s development.

I am sure there are a wide range of political persuasions that follow Carly’s blog, but today is a day for celebrating as far as we are concerned. The health care bill that was signed today is of significant importance to Carly and so many other people in situations like her. Before today we had to worry about a lapse in insurance coverage that could have opened up Carly to denial of coverage for preexisting conditions. Carly would always be in danger of reaching her lifetime maximum coverage and could have been forced to make life decisions for insurance purposes only, rather than getting to follow her dreams. We have been blessed by having great health insurance, but we can’t help but think of the millions of other families who are not so lucky and are forced to make decisions on medical care that they should never have to. We are thrilled about the new law and what it means for Carly and many other people facing health challenges.

Love, Brad

March On

The rest of February was nice and quiet in the Nelson house.  Carly's progress has been slow, but it has been all forward progress with no surprise setbacks.  She is spending more time awake each day, and is now starting to use her hands more than we have seen in many months.  She has also gotten a lot better at holding up her head, and she has enough trunk strength to sit up on her own for many minutes.  She was recently given a stander which we now have at home.  The stander is a piece of equipment that supports Carly in the standing position so she can experience having weight through her legs and feet.  She wasn't too sure about it at first, but she is getting better at it each day. We spent two more weekends in Tahoe, and one in Pt. Reyes and Carly seems to enjoy being on the move and in these beautiful outdoor places.  It is therapy for the entire family.

With May not far away it is time for the annual Bay Area Brain Tumor Walk, one of the main fundraising activities during National Brain Tumor Awareness Month.  Team Carly raised an amazing $11,000 last year and although there was some rain, we all had a great time walking for a good cause.  Team Carly will be out in force again this year and we hope to top last years's fundraising goal.  You can join the team by clicking here, and you can choose to walk with us or sponsor one of the team members if you are not able to join on the day of the walk. Thank you, and we hope to see many of you there.

Love, Brad

Little Snow Bunny

I can hardly believe that two weeks have passed since my last post. Where does the time go? Carly has been doing well, making progress each day without any surprise hospital visits to speak of. She is slowly starting to spend more time awake each day, and she is starting to use her hands for more exploring than we have seen in a long time. Last weekend we got to make our first trip in two years to our ski house in Tahoe. Carly seemed to like the mountain air, and she was mesmerized by the snowflakes falling on her cheeks as she looked up to the sky. It was so nice to be up there and we are headed back tonight!

The biggest news is on the seizure front. As you all know Carly was suffering from infant spasms for over three months and we were trying to find a medication that would get them under control. In the beginning of December we had determined that the second medication was not working and we had started to taper it in preparation for the third medication.  On December 10th we were back in the hospital dealing with a shunt malfunction and after two days in the PICU the seizures just went away. It has now been two months since then, she is off all seizure medications and they are still gone. The neurology team does not have an explanation for it, they just said to be thankful. Needless to say we are beyond thankful and we know that the love and prayers from all of you helped her get past this hurdle. We continue to take one day at a time, and this string of good days has been a wonderful gift.

Love,

Brad

Weekend At Home

The last few days have been a whirlwind, which has fortunately ended with us back at home again. We spent the last two nights up at UCSF dealing with Carly's most recent curveball. It looks like the biggest issue that sent her there was dehydration, even though her sodium (which we track very closely) was at a normal level.  Once an IV was placed and Carly was able to get some fluids, her heart rate began to lower toward more normal levels and she started to look and feel a lot better.  She had a decent day yesterday and overnight she slept pretty well, but was still bothered by something that clearly did not feel good.  Late in the day today test results came back that showed on top of dehydration Carly also has a urinary tract infection.  That helps to explain some of the pain that she has been having, and is now being treated with antibiotics.  Once again, living as close as we do to the hospital helped convince the doctors that Carly could head home early and we walked through our front door a few hours ago.  We are enjoying our family time at home and expect that Carly will feel better as the weekend passes.  Thank you for keeping her in your thoughts and prayers.

Love, Brad

Never Forgotten

January 27.  It is a day that will always have meaning to us, no matter how we wish it didn't.  Two 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 did a lot of charity work, including several trips to Haiti with Engineers Without Borders so the events of the last few weeks have made me think of him that much more. Tyler introduced me to my wife Christa over ten years ago and for that I am forever grateful.  I said this last year but it is as appropriate as ever: In honor of him go enjoy the outdoors, make a conscious effort to do something that helps our planet, and give someone a big heartfelt hug. We love you Tyler.

I wanted to write that post earlier today, but we ended up spending most of the day at UCSF trying to get to the bottom of a new issue that is bothering Carly.  In the night she started grunting a lot and that has continued all day.  She seems to be having abdominal pain, had some blood in her stool and started throwing up later in the day.  After a day of tests we were sent home, only to have to return to the emergency room a little while ago as Carly was not improving.  I am writing from our small room in the emergency department now, where we are likely to spend the night as there are few rooms to spare on the hospital floor.  Carly is resting a bit now for the first time today, and we are hoping that some of the tests they are running will help shed some light on her most recent issue.

Love, Brad

Helping Each Other

Carly has been free from her NG tube since Tuesday and she continues to eat well.  She has also graced us with a few more smiles over the last week and every one is a wonderful gift. A belly ultrasound yesterday showed that she is still absorbing the CSF that her shunt is sending into her peritoneum too, so it continues to look like her new shunt is working. All of this good news means that she can now get back to her physical therapy sessions and start making up for some lost time.

I just noticed a poll today that asked people if they have donated to humanitarian aid in Haiti.  Of those polled, 48% had donated and 52% had not, and honestly I would like to see the number that have donated be much higher. I am sure everyone that reads this blog is aware of the disaster that has happened to this nation that had already seen more hardship than any nation should. We have been through a lot over the last two years, but we are still so much more fortunate than so many in Haiti. If you have not already, please consider donating to Haitian relief and we will also help by sending the power of Team Carly their way.

Love, Brad

Getting There

The last week had a mix of ups and downs for Carly, but fortunately the last few days have been an upward trend.  For much of the week Carly was really uncomfortable, with stretches of inconsolability. There was no clear reason for Carly's discomfort but fortunately that started to take a turn for the better on Saturday and she had a good Sunday too. Carly's shunt is definitely working, and her peritoneum is absorbing the CSF which is a big relief and a good sign that we may be able to put shunt problems behind us for a little while.  On Saturday Carly started eating pureed solids and this morning Carly nursed for the first time since Christmas, both major steps forward.  For nearly three weeks all of Carly's feeding have come through her NG tube, but if she keeps up her eating ways for another day we will finally be able to take out the NG tube! Carly has also smiled a few times over the last few days, including a really cute one right now as I type.  We had not seen her smile since October 31st, so you can only imagine how heartwarming that has been for us to see.  Hopefully all of these great steps over the last few days are just the beginning of good times ahead.

Love,  Brad

Happy Carly Day!

Our little girl is all grown up!  Well, that may be an exaggeration but it is hard to believe that Carly turned two today.  The last year and a half have not been easy for her, yet no matter what challenge has been thrown her way she continues to be resilient. She is still not feeling great since her surgery last week and there are some unanswered questions as to what is bothering her but we are all thankful that she got to spend her day at home and outside like a little girl should. Thank you all for the love that has helped her get this far, and continues to lift her up every day.

Love, Brad

Hometime Healing

Carly was discharged this afternoon and we made our family walk back down the hill.  She had a lot of post-operative pain that lasted into the night yesterday and we expected we would need to stay until Sunday, but this morning she was feeling a lot better and we felt ready to return home. She continues to be a bit uncomfortable from her surgery, but we can manage this at home and it should subside over the next few days. While she still needs her NG tube for her feeding, we are hopeful that she will be ready to nurse again soon. Her strength never ceases to amaze me.

Love, Brad

Eight Is Enough

After a long day of waiting for a spot in the OR, Carly went into surgery at 4:12 this afternoon.  The surgery went very smoothly and was over in less than two hours.  Dr. Gupta replaced all of the shunt hardware and Carly now has her eighth shunt. She is a bit sore and fussy from the surgery, but seems to be settling down now for some well deserved sleep.  Thank you for sending love that helped to guide our little angel through another procedure.

Love, Brad

Another Shunt Bites The Dust

Carly's shunt function test showed what we had been thinking for some time, this shunt is not working properly. It looks like there is some type of obstruction in the catheter that runs from the shunt valve to her heart preventing it from draining properly. It is very likely that this clogged soon after her last shunt surgery and all of the symptoms that Carly has shown over the last few weeks are a result of high cranial pressure.

Carly is scheduled to have surgery tomorrow to replace the latest faulty shunt. Dr. Gupta said that he is ready to try a VP shunt again (a shunt that drains into the peritoneal cavity, rather than her current VA shunt that drains in the atrium of her heart.) If you remember the beginning of Carly's shunt saga, she once had a VP shunt but her peritoneum would not absorb the cerebral spinal fluid drained there. This was pretty unusual, but the theory is that residual tumor present at that point was responsible for making the CSF difficult to absorb. She is now tumor free and the hope is she will be able to manage the CSF allowing her to stick with a VP shunt which typically has less complications than a VA shunt. We envision that 2010 is going to be Carly's year despite a rocky beginning, and there is no better place to start than her surgery tomorrow.

Love, Brad

On Pins And Needles

Last night was far from good for Carly. Her shunt adjustment that allowed it to flow more easily seemed to offer a little improvement earlier in the day, but as night came her discomfort escalated. She wasn't able to sleep for more than a few 20 minute patches and Christa and I rocked, held, bounced, and walked with her throughout the night. At 5am the neurosurgery resident adjusted Carly's shunt down once again which seemed to help for a couple hours but she became inconsolable again into the morning. Needless to say we were very concerned and hoping that there would be some answers today.

Carly had a head CT scan at 11am to see if there were obvious signs of too high or low cranial pressure. The scan didn't show any changes from earlier in December, but looking back at a scan from September they saw a pretty big increase in ventricle size between then and the December scans. This could indicate that she has been under higher than desired pressure for many weeks and could possibly explain her recent problems. The neurosurgery nurse practitioner said there is a chance that the most recent shunt setting will help her get to a pressure that she can tolerate. She added that there is also a possibility that this shunt is not functioning at 100%, restricting the flow and adding to her pressure issues. They have scheduled another study for tomorrow to help evaluate the shunt function to help rule out another shunt malfunction.

When they shared these details with us Carly had been resting pretty peacefully for almost an hour, a major improvement from the night. Carly has continued to rest peacefully since then and has now been at peace for almost six hours. She hasn't been this comfortable for many days and it has lifted our spirits to finally see her doing better. We don't know if this will keep up though the night or not, but we are cherishing every minute of it and are hopeful that this is the beginning of the healing trend that we have all been waiting for.

Love, Brad

Revolving Door

Against all of our best efforts we have found ourselves in the hospital once again. After our short stay on the 29th Carly continued to refuse to eat but fortunately we had the NG tube in place which allowed us to keep up on her diet and fluid needs. She was very fussy during the night of the 30th, keeping us up all night trying to help her feel comfortable. She did pretty well on the 31st, but then become very agitated again on the morning of the 1st and she stayed that way all day and into the 2nd. By 9pm yesterday it was clear that her agitation was too extreme to continue to manage at home so we made our way back to the emergency room and were admitted back to the hospital (although this time to a regular room on the quiet 7th floor instead of the PICU.)

The neurosurgery team believes that the issue may be that Carly is sensitive to small changes in cranial pressure and her current shunt setting is too high for her to tolerate. They turned the shunt down one setting last night with hopes that this would give her the relief she needs. The change may have had a small effect, but Carly continues to be uncomfortable. She had two periods today where she rested for 45-50 consecutive minutes which is a lot more that she has done in the last four days but she still has a way to go. There is a chance that she needs more time to adjust to this current setting, but it is also possible that her shunt needs to be adjusted down one additional setting. We will decide in the next few hours whether or not to change the shunt setting, and either way we are really hoping Carly can get some comfortable rest tonight. Your healing love is much appreciated.

Love, Brad