Smiles

Carly is so happy to be home she can't keep her mouth closed when she smiles. She, Christa and I want to thank everyone for sending all the love.

Love, Brad

Home Sweet Home

There really is no place like home, and several sleepless nights in the PICU only makes that more clear. Carly was discharged earlier today and she is happily snuggled up with her mom on the sofa. It is a wonderful sight.

Love, Brad

Home On The Horizon

We are still in the hospital, but the end is getting near. Carly's IV was removed earlier today and now she is taking all of her medications orally so we can manage them when we are at home. Her sodium levels went up again early in the day but they seem to be back in control again. That is still the one remaining issue between us and home, but we are expecting to get the all clear tomorrow. Carly has already tried one new trick since the operation, her first mouth closed smile! It is as cute as her wide open mouth smiles and brightens our day every time. Thank you all for the love and support that has been coming our way. We are, as always, grateful to have such a wonderful support system.

Love, Brad

Can't Keep A Good Girl Down

Carly is feeling much better this afternoon as the effects of anesthesia and high doses of steroids wear off. She had only slept 30 minutes in over 30 hours and was definitely not feeling great but earlier today that started to fade and now she is acting more like herself. Her sodium level is now normal and she was taken off her IV drip this evening. They will be monitoring her ability to manage her sodium levels over the next day (or so) before we get the all clear to go home. We would obviously like for that to be tomorrow but just seeing Carly acting like her cute little self is enough to keep us happy.

Love, Brad

Merry Christmas

Carly is recovering well today, feeling a few effects from the anesthesia and some of her medications but certainly on the mend. Her sodium levels were a little high this morning but they are returning to normal now. We will see how she is doing tomorrow and perhaps we will be heading home, but that is still unknown.

Spending Christmas in the pediatric intensive care (PICU) wasn't something that we imagined in our wildest dreams but it provides real perspective on the important things in life. Carly is a little miracle and her incredible spirit is a constant reminder that you can never give up. Our family and friends both far and near continually show us the power of love to help lift each other up. And through these challenges I have been reminded of what I already knew, the best marriages are even stronger in tough times than they are in good times.

Love, Brad

The Pressure Is Off

Carly's surgery is over and everything went smoothly. She is in the PICU and we are waiting for her to wake up. Thanks for the prayers. Merry Christmas.

Love, Brad

Twas The Night Before Christmas

Twas the night before Christmas and I got a shunt? That isn't exactly how we planned to teach the story to Carly, but that is where we have found ourselves. Carly had an MRI earlier today to try to help determine why she hasn't been feeling well this past week. What we learned is that the pressure in her ventricles continues to be high and is now compressing her brain enough to lead to some of the symptoms we have observed. The pediatric surgical team determined that the risks of waiting longer outweighed the gains that Carly will immediately feel when the pressure is relieved. They have scheduled the surgery for 9:30 tonight and it should take 2 - 3 hours total. We will keep you posted.

Love, Brad

A Long Day

We logged some serious hours at the UCSF hospital today, getting there at 9am and not leaving until after 6pm. We met with a wide range of doctors all trying to figure out what is bothering Carly. She had another round of blood tests and most of the results looked normal. Her sodium continues to be high, and we will continue to try to boost her fluid intake. The endocrine team has increased Carly's hydrocortisone dosage for a little while to see if this can help make her feel better. To completely rule out any neurological issues Carly's next MRI will be moved up, if possible they will try to fit it in tomorrow.

We have had to cancel our travel plans to visit my family in Michigan tomorrow which is disappointing, but we know that we will all celebrate Christmas together in spirit. We are thankful for all of the prayers and positive energy that everyone is sending our way. Right now our little angel is sleeping peacefully.

Love, Brad

Never A Dull Moment

Carly seems to like to keep everyone guessing. Only two days after her ultrasound showed that she had 350 ml of fluid collected in the bump on her head, the bump started to shrink. By Friday of last week the bump was smaller than it has ever been since surgery and it continues to be that small today. (Can you say Christmas miracle!) At the same time that this amazing progress has been taking place, Carly has not been acting like herself. Her energy level has been really low and she has been napping a lot more than usual. These symptoms could indicate anything from a simple cold to something more critical so she has had several tests over the last few days to try to figure it out.

Ultrasounds have shown that there still isn't excessive pressure in her brain, a good sign that neurological problems can be ruled out. Her sodium level has been elevated, and continues to rise, in each of her last two tests which indicates that she is dehydrated. We have been trying to increase the amount of fluid that she is drinking and she will have another sodium check this morning to see if we can get that level to start to lower. It remains a mystery why she isn't acting quite like herself but we hope to get some clarity on that in the next few days. We know she will power through.

Love, Brad

Next up

Carly had an ultrasound last Monday and again today and both showed that her ventricles (the fluid filled spaces in her brain) are getting a little larger and the amount of fluid trapped in the bump on her head is also increasing. This means that she has some degree of hydrocephalus, where the absorption of brain fluid does not keep up with the production. It does not pose an immediate threat to her but it is something that will need to be addressed pretty soon. They have scheduled an MRI for January 6th to monitor the tumor and possibly give additional insight into the cause of the hydrocephalus. They have also scheduled a surgery for January 9th, barring a Christmas miracle, to put in a shunt which will act as a drain for the excess fluid in her head. Through all of this, and countless appointments, Carly continues to be unbelievably sweet and she is learning new things every day.

Love, Brad

Holiday Season

We got out the lights and Christmas decorations this weekend and had some extra help from a little Christmas elf.

Love, Brad

Twinsies!

Carly had fun tonight cuddling her matching doll, a gift from her GG (great grandmother.) Thanks GG!

Love, Brad

Time To Heal

Things are still moving in the right direction here at the Nelson house. In the past week Carly has had check-ups with physical therapy, occupational therapy, vision therapy and ophthalmology and they have all noted that they are seeing big improvements. She is doing a lot of smiling and particularly likes playing with her stuffed cat Pete (as in Purdue Pete.) The fluid on top of her head is still there in all of its glory, but it doesn't seem to be causing Carly any pain. She has an ultrasound tomorrow to check on her internal brain pressure to be certain that the fluid isn't harming her. If the ultrasound looks good, we will stick to the plan of waiting until her MRI in January to make a decision on the fluid. The best case scenario would be for the fluid to reabsorb on its own between now and then. We know she can do it.

Love, Brad

Thanksgiving

Thanksgiving has taken on a different meaning for us this year. We have never had so many things to be un-thankful for happen to us or our close friends in one year. 2008 has not been easy, but through these issues we have gotten a greater appreciation of the love and support that surrounds us each day. I cannot begin to tell you how thankful we are for you - our family, friends, coworkers and new acquaintances who have given us strength each step of the way. You are inspiring and we love you all. We are also thankful that we live only a few blocks away from some of the best medical care in the country. We are truly thankful for each and every doctor that has helped Carly get this far. And mostly we are thankful for Carly, who came into our lives on January 12 and continually amazes us with her strength, determination and incredibly cute smile. Happy Thanksgiving.

Love,

Brad and Christa

She Can Work It Out

Carly had another head ultrasound today which she is pretty accustomed to by now. We weren't sure what they would see since the lump on her head has returned to its less squishy state, and the volume is back to roughly the size of a coke can. We reviewed the results with Dr. Gupta and learned that her ventricles look normal, meaning the pressure in her brain is still ok and the lump on her head isn't causing any problems (other than cosmetic.) The plan now is to monitor her ventircles with an ultrasound every two weeks. If everything stays stable then the decision on if she need a shunt can wait until she has her MRI checkup (to monitor the tumor size) in early January. Dr Gupta said that kids her age typically need shunts when they go through what Carly has, but he also recognized that Carly in not typical and has not ruled out a full recovery with this issue. It is reassuring knowing that she has the strength of all of you helping her each day.

Love,

Brad

All Smiles

Carly is particularly happy today. At her endocrine appointment they agreed to reduce the frequency of her blood tests to every three weeks. After getting stuck every day for awhile, this is great news for her (and us.)

Love, Brad

The Right Direction

As of the last post Carly was scheduled to have surgery tomorrow to put in a shunt unless the fluid in her head suddenly slowed in production and stopped placing increased pressure on her ventricles. At her head ultrasound today, they found that is exactly what is happening. Although the fluid filled bump is still there on Carly's head (and nearly the size of a can of coke) it has gotten a lot more squishy in the last few days. This, in conjunction with ventricles that look normal, indicate that she may be starting to manage the fluid on her own. It will take some time to know for sure but the surgery has been canceled and she will have another ultrasound and check in with neurosurgery next Monday. Thanks for the healing thoughts and prayers, keep them coming.

Love, Brad

The Weekend Update

Carly is feeling pretty good heading into the weekend. She had an ultrasound on Thursday to check on the fluid pressure in her ventricles and they looked about the same size as a week ago. Today her ophthalmologist dilated her pupils to check out her optic nerve and make sure that it isn't experiencing excessive pressure and he verified the good news from the ultrasound. At the very least this means that we can all rest easy over the weekend without being overly concerned by the fluid that has accumulated in the lump on her head. On Monday we will check in again with Dr. Gupta to determine the next steps, and they are holding a Wednesday surgical appointment for her should the decision be to insert the shunt. Carly, Christa and I hope everyone has a great weekend.

Love,

Brad

Cheese

As you can see from the picture, Carly's cute smile is back in effect. Despite the lump on her head and some teething pain, she is a real trooper and feeling good for much of the day.

We spoke with neurosurgery yesterday and learned that Dr. Gupta was not available this week. We were given the option of either waiting until next Wednesday for the shunt operation, or having one of his colleagues perform the operation this week. Since he is familiar with Carly we are planning on waiting until next week, but we will be following up with them to make sure that the fluid isn't increasing the pressure in her ventricles. We should know for sure tomorrow.

Love,

Brad

You Can't Always Get What You Want

Carly had her ultrasound yesterday which showed that her ventricles had decreased in size since the ultrasound that preceded her last tap. This is the good news. The bad news is that the fluid bump on her head started coming back pretty quickly after the wrap was removed and it continues to get bigger today. This likely means that she is still producing CSF faster than she is absorbing it and she will likely need to have a shunt inserted next week.

Since September 12 when we learned of Carly's tumor we have often reminded ourselves that the most important thing is a happy and healthy future for Carly. There are a lot of challenges along the way to this future and we may not always get there on the easiest path, but she will get there. The shunt can be an important factor in getting her there as it will allow her brain to develop properly. There is still a good chance that once the remainder of her tumor is removed she will no longer need the shunt for this fluid regulation. We appreciate all of your love and support and know that it is helping Carly each day.

Love, Brad

Hope

Carly had 0.6 lbs of fluid drained from her head yesterday and the procedure was quick and uneventful, although still nerve-wracking for her parents. As you can see from the photo, her head is wrapped in a bandage now to discourage the fluid from returning. We will have an ultrasound on Friday to see if she is able to manage the fluid on her own or if she will need to have a shunt inserted to help with drainage.

After the historic night yesterday there is an abundance of hope in the air, and we are all hopeful that Carly will be able to maintain the proper fluid levels on her own and continue progress toward a healthy brain. Yes she can!

Love, Brad

Roller Coaster Of Love

Today was one of those days when you realize that the path we are on is a roller coaster ride full of highs and lows. Carly's head is very swollen again so she had an ultrasound to check on her progress. They found that the ventricles in her brain are more swollen than last time, indicating that she may have hydrocephalus. Typically a person continually produces cerebral spinal fluid (CSF) which is absorbed back into the body at the same rate so there is a fresh supply at all times. When someone has hydrocephalus their body does not absorb the CSF as quickly as it is produced which results in an excess amount of fluid in the brain. The treatment for this is the insertion of a shunt, which is a tube that runs from the brain to the abdomen with a one way valve that allows the excess CSF to be drained. The bad news is that when shunts are inserted in kids under age three it typically means that they will need to have a shunt for life, as it causes their biological means of absorbing CSF to stop developing. While this is a problem that we obviously need to address for Carly, we also want to avoid locking her into a future that can possibly be avoided.

Dr. Gupta gave us the option of either inserting a shunt or performing a second "tap and wrap" (drain and bandage) tomorrow afternoon. He doesn't feel that another round of tapping will be any danger to Carly, but he isn't certain it will be effective either. We have decided to try it anyway and will be directing all of our energy to trying to help Carly heal this critical brain function. Carly will most likely have another ultrasound on Friday to evaluate the size of her ventricles and decide if a shunt in unavoidable or not. Please send all of your prayers and energy to this healing.

Love, Brad

Happy Halloween!

We hope everyone had a great Halloween. Carly took to the idea of "frogging up" like a true Nelson/Nunes and had a great day in her frog suit. We closed out the night watching the live webcast of the Widespread Panic show and Carly danced the night away.

Love,

B, C and c

Bumps In The Road

Carly got her first high chair today and enjoyed eating apple sauce and pears as her first meal in it. She was given a cute new hat too which is perfect timing because the bandage on her head was removed on Monday and the bump on her head is back. Next Monday she will have another ultrasound to make sure the fluid isn't increasing the pressure on her brain, but judging from the last ultrasound we don't expect that it is. We were told that sometimes this happens after this type of surgery and that it often takes several rounds of "tap and wrap" (drain the fluid and then wrap her head in a bandage) before it completely heals.

Carly continues to do well otherwise. The ophthalmologist said that there was noticeable improvement in the past week in her ability to control her eye movements. A development specialist brought Carly a few new toys to play with and she particularly likes the red pom-pon and Mardi Gras beads. We will make sure that the red pom-pon is swapped for a gold one soon, they may be having a terrible football season but she still has to support the Boilers.

Love, Brad

Wrapped Up

Carly has been wrapped in this bandage since Thursday to help discourage fluid from returning to the space between her skull and skin and was clearly happy to have it taken off at her appointment this morning. She is still rubbing her head and moving it back and forth to scratch the back as she is eating now. Dr. Gupta was happy with how it looked and said to leave her head unwrapped for a few days to see how she responds. There is already some fluid pooling back at the site now so we will see how it goes over the next few days. They can manage it either way, but it is preferable that swelling does not return.

Carly is doing well and we certainly appreciate the baby gifts, hugs, phone calls, cards and blog comments. You are all a great support to us.

Love, Brad

Lighten Up

Carly just returned from a quick procedure this morning to drain the fluid that was trapped between her skin and skull. We were in the same room we brought Carly to before both her biopsy and tumor resection surgery and I think we all had a few flashbacks, but this time the doctors were finished in less than 30 minutes. They removed 200 ml of fluid, almost a half pound, so I imagine it will be a breeze for Carly to handle her lighter head now. Her head is wrapped in a tight bandage to discourage the fluid from returning, and Dr. Gupta will check her on Monday to see how things look.

Our other appointments this week have gone well and all of the various specialists are very encouraged by Carly's progress. She will start having weekly home visits to help with her vision development and we will continue to get blood tests for her sodium level every other day. A few of the doctors, including the director of the ultrasound lab, have mentioned that Carly's tumor was the biggest they have ever seen in someone her age. While this isn't the type of record we wanted her to set, I have a feeling it is not the only record she will be breaking in her lifetime.

Love, Brad

Carly Goes Bananas

Carly continues to do well as we get ready to start her developmental therapy tomorrow. There has been one possibly major improvement over the last few days related to her sodium control. Since the surgery Carly has not produced enough of the hormone ADH which the brain sends to the kidneys when it is time to stop peeing. Without this hormone the body continues to pee and can quickly become dehydrated to a very serious level. We have been administering daily shots of DDAVP to compensate for this hormone in addition to closely monitoring all of her inputs and outputs. It has now been 93 hours since we have last given her a DDAVP shot, and her sodium levels are still in an acceptable range. We are not certain that her body can control this completely on its own, but this is a very encouraging sign that she is on the road to recovery.

Over the last few days the area around Carly's incision has swollen considerably (we have joked that instead of a forehead she has an eight-head.) To ensure that the swelling was not affecting her brain she had an ultrasound this afternoon. The results looked great and all of the key brain areas are healing well. To address the swelling Dr. Gupta will perform an outpatient procedure on Thursday to extract the fluid that is trapped between her skull and her skin. They will wrap her head in a bandage for a few days in hope that the pressure will discourage the fluid from returning.

The last bit of news from the last few days is that Carly has taken to eating solid foods like never before! Prior to surgery Christa had been working on getting Carly to like solid food, but it would take more than twenty minutes to get her to eat a few teaspoons. Today, Carly polished off a half container of banana baby food before moving on to carrot. This will make it so much easier to help her put on some much needed weight.

Love, Brad

Ready To Rock

Carly got a new hat today and she already seems to have gotten an attiude boost. We danced to some Widespread Panic while she was wearing it and it was easy to see that she was just counting the days until her next live show.

Love, Brad

Pass The Peas

Carly had her first meal of solid food since surgery, some delicious Gerber peas. She didn't exactly wolf them down, but she tolerated it pretty well. She sends baby love and little baby hugs out to all of you.

Love, Brad

Happy Christa Day!

The difference between a day in the hospital and a day out is beyond words really. It is a huge relief for both Christa and me, and Carly is clearly much more at ease and rested when she isn't being poked and prodded every hour or two. We got to celebrate Christa's birthday with her family and my mom at our house tonight which was yet another thing to be thankful for.

Carly had her first outpatient blood lab this morning, something that she will need to do every day for at least this week and at some interval for weeks to come. There is something to be said for someone who spends their entire day taking blood from little kids, because this nurse did an incredible job. She got the amount needed in a matter of minutes with very little crying on Carly's part (very different from the last 20+ lab draws that Carly has had to endure.) Christa said that this was another great birthday present. While Christa opened her other presents tonight, Carly spent much of the time entranced by a glowing egg. Too cute.

Love, Brad

Home

It has never felt so good to walk through our front door.

Love, Brad

Looking Ahead

It is looking likely that we will be heading home tomorrow! Christa can't think of a better way to spend her birthday on Wednesday than to wake up in her own bed without constant interruptions from doctors and nurses. I can't argue with that.

We are starting to get a clearer picture of what we will need to do for Carly in the coming weeks and months. Carly will have MRI imaging every three months to monitor the remaining tumor. Should it stay unchanged they will leave it for the time being. Should it start to grow significantly they will need to perform a second surgery which would be very similar to this round. There is a chance that if it does not grow appreciably before her third birthday that it could then be treated with radiation, but this is an outside chance. Because of the location of her tumor, there has been decreased function of her pituitary gland. At this point it isn't known if this is just a temporary issue while there is post surgical swelling in her head, or if it is permanent damage. Carly will need thyroid hormone replacement daily, cortisol replacement three times daily and daily injections of DDAVP to help control her hydration levels. At some point down the road they can test again to see if her body has healed enough to take her off of these medications and we will continue to envision this as the ultimate outcome. If the damage is permanent, it can be be dealt with using careful monitoring and medication and she can live a normal life in all other areas.

We will also immediately begin seeing vision and developmental specialists to ensure that Carly can make up for any lost time. We are blessed that we are already being connected with a great network of experts in these areas and we know that with some effort on our part and by Carly she will get where she needs to be. It is very clear to us that your love and support helped get us safely this far, and we will continue to need it as we try to get Carly back on the path that we have envisioned for her since she was born. Hugs all around.

Love, Brad

Birds Of A Feather

Today was beautiful day in San Francisco and the Blue Angels put on another show. Carly continues to do well, spending much of the day playing with her favorite stuffed animals. She even used her new tooth to chew on Big Bird's hand for awhile. Maybe she won't be a vegetarian?

Carly had two blood draws today which is never her favorite but she calms down pretty quickly afterward. I gave Carly a shot for the first time, something Christa and I will have to do once a day when we get home. It is now looking like Tuesday may be that day, but we know better than to plan on it. The most important thing to us is that she continues to get one step closer to a completely healthy brain.

Love, Brad

Carly's First Tooth

On top of all the other things Carly has handled here at the hospital, her first tooth just appeared in her bottom gum. She was so interested in this pack of crackers today you would think she was ready to put that tooth to work!

Love, Brad

Stir Crazy at UCSF

Today was a beautiful day in San Francisco and we enjoyed watching the Blue Angels flying over the bay and city from our room. Carly seemed to enjoy her first real breath of fresh air on the 6th floor patio and she got in several rounds of lap time and play time with us and both of her grandmothers.

After review by the tumor board, the decision for the next step has been made. We will be going home early next week once they have a good handle on her hormone levels and how to properly medicate to keep her in the right range. This will mean giving her several hormones on a daily basis, but with them and with so much tumor removed they expect her development to really start to take off. Her development will be closely monitored and every three months she will get an MRI to evaluate the size of the remaining tumor. If she develops as well as we expect and the tumor does not grow then they will continue to hold off on a second surgery. At some point some action will need to be taken on the remaining tumor, it is just not yet known if that will be in a few months or more than a year down the road.

Again we have to tell you how much we appreciate all the love, support, and strength you sent to Carly and us during this long week. I am convinced it made this time easier on us and that it gave Carly the extra boost she needed to get this far. She will continue to need your help as she moves on to the next step on her way to full recovery and I know that you are all there for her. Thank you so much.

Love, Brad

Movin' On Up

We were finally moved out of the PICU to our own room on the general pediatric floor. The room decor may be straight out of the 70's, but the view of the Golden Gate Bridge and Mt. Tam make up for it. Even better, our whole family can sleep in the same room for the first time since before the surgery.

Today they also removed every wire and tube that had been attached to Carly. We can easily hold her, and tomorrow we will take her for her first walk outside for some fresh air on the 6th floor patio. We also expect to hear the next steps in Carly's treatment plan tomorrow. It seems that this will likely be a second surgery several months from now, giving Carly time to grow and develop before going through this a second time. She has already shown us that she is strong enough to beat it.

Love, Brad

One Week Down

It amazes Christa and me that only one week ago Carly was just about finished with her marathon surgery session. It has been the longest week of our lives by far, but it is also pretty incredible how far Carly has come in such a short time.

Today Carly had a CT scan to evaluate the swelling in her brain and everything looked good. They removed the drain from her head and used one stitch to close the hole. Although Carly didn't particularly love this it has made moving her from her bed significantly easier and we are one step closer to moving out of the PICU. I can't tell you all how much your support and love has helped get us this far, we appreciate it each and every day.

Love, Brad

Getting Stronger

Carly continues to improve and is acting more and more like herself each day. Christa was able to breastfeed Carly for the first time today and both were very happy to reach this milestone. Carly never really liked bottles before the hospital and she doesn't seem to see any reason to start now (her stubbornness is another great sign.)

We are still in the PICU (pediatric intensive care unit) with two final hurdles to cross before we can move to a regular hospital room. Since the operation Carly has had a drain line in her head to manage any excess fluid that was likely to be produced after the operation. They have been monitoring this and expect that they can take this out either tomorrow night or Wednesday. That's hurdle number one. They are also trying to get Carly's sodium levels under control, a critical part of hydration and proper bodily function. This has been fluctuating a bit, which is not unexpected, but it requires hourly checking. Once this stabilizes we are free to move on to a standard hospital. You would never think that a regular hospital room could be something so revered but having a private bathroom, room for two parents to sleep, and freedom from a myriad of wires and constant monitoring will be great.

Love, Brad

My Ladies

Here is a photo taken of Christa and Carly today. Carly is eating from a bottle now, and she seems to have a big appetite. This is a great sign this soon after surgery, and an indicator of how strong she is.

Love, Brad

Post Op Progress

Yesterday I fell asleep before I could send out a Carly update. Overall she is continuing to improve and a lot of critical levels are approaching normal. She didn't sleep for the first 32 hours after the surgery, but is now managing to get in some naps. They warned us that on the second day post op patients are usually at their most puffy (the entire body swells up after a procedure like this.). They weren't kidding, as she was swollen from head to toe. She still looked as cute as a button, just a larger button.

We spoke a bit with Dr. Gupta and he continues to be happy with her progress. He seems fairly certain that a second surgery is in her future, the question being whether that would happen sooner (a week) or later (several months to a year+.) We will be in the ICU until at least Monday, and then we should start to get a more firm plan on the next steps.

Thanks for the continued support, it is definitely helping power us all through this.

Love, Brad

Recovery

Today went extremely well considering what Carly had to go through yesterday. All of the doctors are surprised at how quickly she is bouncing back. She was awake almost the entire day and we did our best to distract her from playing with the various wires and tubes that she is connected to. Her favorite ball and Waddles the penguin got a workout.

Carly had another MRI this afternoon to provide a clear picture of what tumor remains. This will help the team determine the next steps. Just a few minutes ago they removed Carly from her ventilator so she can breathe on her own. It was so nice to see her cute little mouth again.

Love, Brad

A New Day

After a few hours of sleep curled on the chairs of the 6th floor waiting room, it felt great to see Carly's cute face. She is on a breathing machine and they are trying to keep her sedated but she seems to have other ideas. She is waving her arm around and scratching at the sheets like she would at home. She is acually able to move around all of her extremities now. They didn't know they had a Nelson/Nunes on their hands.

The surgery took longer than anyone expected because the tissue ended up being more fibrous and vascular than anticipated. This meant they had to move slowly and replace a lot of blood along the way. Dr Gupta said that the tumor had a well definied boundary and should they decide on a second surgery he expects that they could get out quite a bit more. They stopped when they did because 15 hours is a long time for a little girl to be under anesthesia. We will learn more about the next steps as they observe Carly over the next few days. Thanks again for your continuing love and support. The nurse said that Carly is a very strong baby and we know that you are all contributing to that. Keep up the good work!

Love, Brad

Surgery Is Over

Well it was a long stretch there, particularly since the last update that we got, but surgery has finished and Carly is doing well. They were able to remove about 75% of the tumor but it was a difficult case for them and they did not want to push her any more. They are going to monitor her for a few days to determine the next steps which may include a second surgery in the next week or so.
We will keep you all posted, now it is time to get some rest. We love you all.

Love, Brad

...Still Waiting...

No big surprises with the most recent update. Carly is still going strong and the doctors are whittling away the tumor. There is still no estimated finishing time, which means there is still more than a few hours to go. All of the love and support that you are all sending to Carly and us is really helping as the day goes on.

Love, Brad

We're Still Waiting...

The latest from the OR is still good. Carly is very stable and the anesthesia team is happy with how she is doing. Dr. Gupta is slowly and carefully working away and they expect several more hours ahead.

Love, Brad

Hard At Work III

The latest update is more of the same (no relation to John McCain.). Carly is doing great and they are slowly removing the tumor.

Love, Brad

Hard At Work II

We just got our hourly update from the OR. Things are still progressing well and Carly is good. The tumor is a bit adherent to adjoining tissue so it is slow work but they feel good about it. It will be many more hours before they are finished, thanks for all of the uplifting comments.

Love, Brad

Hard At Work

The latest update is that Carly is still doing really well. They are making good progress and expect that they will still need to work for quite awhile. She is surrounded by positive light.

Love, Brad

Progressing

The news from the OR is that everything is still going well. We can feel all of the loving support from you all.

Love, Brad

Underway

We just got our first update from the operating room. Carly went to sleep very easily and everything is going well so far.

Love, Brad

The Big Day

Wednesday is finally here, and it is time for Carly to get this tumor out. We are walking up to the hospital now for our 6:30 check in. We expect that Carly will go under anesthesia around 7:30 and at 8:30 they will begin the surgery. The surgery could take eight hours or more so it will be a long day of pacing around UCSF. Fortunately they will phone us every hour or two with updates on Carly's progress and we will have family and friends with us to help pass the time. I will try to post updates to this blog from my phone as they come today as long as technolgy doesn't fail me.

Christa, Carly and I wanted to thank everyone again for all of the good wishes, positive energy and prayers that we have received over the last two and a half weeks. It really has been an increabile help during this time to have your support and love.

Love, Brad

Date Set

Just a quick update today. We decided to schedule Carly's surgery for next Wednesday, October 1. The surgery will begin at 8:30 am, and we will stay at home the night before and walk up to the hospital for a 6:30 check-in time.

One of our friends, Chris Jensen, has posted a healing meditation for Carly. We want to share it with others so if you are interested in reading it click here. Below are a couple photos from our daily walks the last few days. The redwood tress of Muir Woods were particularly peaceful.

Love, Brad

The Plan

We just finished our meeting with Dr. Gupta, the neurosurgeon who is leading Carly's medical team. With the diagnosis known the meeting did not bring any surprises but discussing the well-being of the love of your life is never easy.

The next step in the plan for Carly is surgical removal of the tumor. There are many things about Carly's case that they call "challenging" but Carly is no ordinary baby. Due to the size, shape, and location of the tumor the surgeons will approach it through the right lobe of her brain. They will need to cut a window in the lobe to provide visibility of the tumor, and a scope will be used for the operation. They hope to be able to completely remove the tumor surgically. Their ability to do so will depend on how the tumor adheres to adjoining tissue, particularly the hypothalamus. If for some reason it does not peel easily, some tumor will be left behind and monitored. It could later be treated with radiation, but ideally not before Carly is three. The best scenario is successful removal of 100% of the tumor with no damage to surrounding tissue. There are a wide range of outcomes that we discussed with the doctor, but the only one that we expect is the best case.

The surgery will be scheduled for either October 1 or 8, with October 1 being the most likely date. We have until tomorrow to decide and we will see if we have strong feeling for one date over the other. The surgery will require a full day and will take place at UCSF, the same facility that has been handling Carly's care from the outset. Typical recovery time in the hospital is one to four weeks depending on many variables.

Here is a photo of Carly on one of her daily healing walks. These walks together with the support that we have received from our family and friends have been incredibly uplifting. Carly has an amazing group of people on her side, and with all of you behind her she will get through this. We love you all.

Love,

Brad

Diagnosis

The final pathology results came in today, and the tumor has been diagnosed as craniopharyngioma. This is a benign tumor that comprises 9% of all pediatric brain tumors. It does not respond to chemotherapy, so the next step will be a surgical resection (removal.) We have an appointment with the neurosurgeon at 9:30am on Monday to discuss the plan for the surgery including when it will happen, and how they plan to address the areas that are close to critical parts of the brain.

The basics that we know are that the tumor is very close to, or touching, her optic nerve, pituitary gland, and hypothalamus. During tumor resection, tumors either peel away easily from adjacent tissue, or adhere to the tissue. The team will not know how it interfaces until they are in surgery, and that will determine how much tissue they can remove. Any remaining tumor would typically be treated with radiation, but Carly is too young for this. In the ideal case, and the one that we are envisioning, all of the tumor will be removed and there will be no damage to any parts of her brain. Should there be any remaining tumor they will monitor it with hope that it does not grow until she is a few years older when she can tolerate radiation.


Here is a picture of Carly today and as you can see she is doing great and is feeling all of the love that you are sending.

Love, Brad

The Beginning

Well I said that I would never blog, but I also never thought we would be in this situation. We will use this blog as a way to update everyone on the latest status of Carly's health. We are visualizing her with a healthy brain and are surrounding her with positive thoughts and energy. All we ask of you is to do the same.

Here is how we got to where we are today:
On Friday September 12 we went to a last minute appointment with a developmental specialist at UCSF to make sure Carly was on track. We had a few concerns about her gross motor development and thought we might need a few exercises to help her in that area. While we were there they recommended an ultrasound of her brain to make sure all was good there. What they found, and what was later verified with an MRI, was a tumor about the size of a plum in the center part of her brain. This is a very large tumor for anyone, particularly a little girl.

We were admitted to the hospital that day and on Tuesday the 16th they performed a biopsy to get a small piece of the tumor to determine exactly what it is. The surgery took about one hour, and Carly recovered really well afterward. Blood labs have shown that all of her hormone levels are normal which means that she has normal pituitary function at this time (the tumor is right on top of this important gland.) Yesterday, Wednesday the 17th, we were discharged from the hospital and allowed to go home to rest and recover. In times like this you become thankful for little things, and we are thankful to be home.

The good news:
Carly is not in pain, and is acting like her cute little self. The fontanelle on her head has not closed yet, which means that the pressure on the brain from the tumor is being released. She has not suffered any brain damage (the brain is squished, but not damaged or bleeding). UCSF Children's Hospital is one of the 8 Pediatric Brain Tumor Centers in the US. Carly's doctor is the Chief of Pediatric Neurological Surgery and a renowned expert in pediatric brain tumors. The hospital is within walking distance of our home and we are surrounded by loving friends and family. In all, Carly couldn't be receiving better care or love.

What's next:
We are now waiting for final pathology results from the biopsy. They gave us immediate feedback on Tuesday, but will not be 100% certain of the tumor type until they finish additional tests. These tests will most likely be completed by this Friday, and they will meet with us to discuss the results. The results will determine whether Carly will have surgery next, or whether she will have chemotherapy to attempt to shrink the tumor prior to surgery. Either way, one of these treatments will begin in 2-4 weeks. In the meantime we will continue to fill Carly with loving energy, envision her brain healthy and take it day by day. Thanks to everyone for your love and support, we are grateful to have such an amazing group of family and friends.

Love, Brad