Angel

We started this blog over seven years ago as a way to help channel as much love and healing energy to Carly as possible. Her life, and ours, had taken a turn into the uncharted and we knew it would take a Team to find our way. Team Carly was formed, and together we faced the challenges ahead. Our leader was the bravest little girl that we will ever know.

Many years and countless trips to the hospital later, things began to get more stable for Carly. Her last shunt surgery was June 18, 2014, a seemingly endless issue that finally resolved itself. Quarterly MRI’s showed no new tumor growth of any kind. A brother, Kempton, came into her life and the two siblings loved each other with a special bond. As Carly’s life settled into a still challenging, but more stable routine my drive to write a blog left me. I can’t explain exactly why I couldn’t write any longer but I knew that all of Team Carly was still behind us every step of the way.

Today I write what will likely be my last post here. Carly, who was always my Angel, got her wings on February 3, 2016. She was comfortable at her grandparents home, with people that loved her.

There are so many things we could say about Carly Grace. She was brave, wise, calm, patient and loving beyond her years. She was the strongest person we have ever known. She battled through more than 100 lifetimes of challenges, yet every time she made it through and we got back to our home she would smile. That smile was a gift to anyone who saw it, warming our hearts and filling us with love and hope. Carly had a way of bringing out the best in anyone whose life she touched: the medical staff at UCSF, her teachers and classmates, therapists, our friends and family, random people that we met, and most of all Christa and me. Our lives won’t be the same without her, but she has forever changed us for the better. We are forever grateful for the privilege of having her as our daughter.

Love, Brad

Six

Our sweet girl turned 6 on the 12th of this month.  She was feeling really good on her birthday, I think her best one yet.  My family came over in the morning for some cuddling time with Carly.  We celebrated with mango sorbet and then just the three of us went to the California Academy of Science while my parents stayed behind with Kempton. We thought Carly would like the sounds and butterflies in the rainforest exhibit.  She slept through most of our walk in the steamy treetops, but woke up once we were down amongst the aquarium tanks.  Carly was looking around, smiling and really seemed to be having fun.  We couldn't have been happier.  We hope 2014 is a year of good health and happiness for Carly.

Love,  Christa

Overdue Update

Since we last wrote Carly has had her most stable run to date. She went just over 4 months without a stay in the hospital. It was a good break for all of us, and one for which we are very thankful. At the beginning of August she underwent her 41st shunt revision and has been holding steady since. We were able to take a trip to Michigan for almost 2 weeks to spend time with Brad's parents, siblings, and their families.

Today Carly is having a gamma knife radiation treatment on the tumor recurrence that we have been monitoring. The tumor is small, but has been growing slowly. We want to treat it now, before it gets to a size beyond the scope of gamma knife radiosurgery. If everything goes well, Carly will get to go home tonight after the 6 hour procedure.

Carly has been smiling quite a bit recently. She, like the rest of us, loved all the time she spent outside at Douglas Lake.

Lots of love,
Christa

A Different Approach

Carly has been up and down since her last surgery, with waves of neurologic discomfort. The last shunt did last a bit longer, but it has slowly been showing signs of becoming obstructed and she needed surgery this afternoon. Dr. Gupta wanted to try something new that could potentially extend the time between her surgeries. The procedure is called a third ventriculostomy, and he made a hole at the base of the third ventricle to provide another avenue for Carly's CSF to exit her brain.

To make the hole he first needed to remove a nodule that was sitting in the way. We have been monitoring this nodule, and another one in a different area of Carly's brain on the last few quarterly MRI's. The nodules have been fairly stable in size, but the neurosurgery team has recently deemed them concerning and likely tumor recurrence. Dr. Gupta said the nodule he removed today did look like tumor and we should get pathology results in the next few days. He was able to safely make the hole in Carly's third ventricle with minimal bleeding. Because this procedure went well and was free of excessive bleeding he also performed a shunt revision. Two parts of the shunt were visibly obstructed and replaced, and she now has a fully functioning shunt #40 in place. The surgery took five hours in all, but Dr. Gupta was happy with the outcome. Carly is resting now in the PICU and will hopefully have a quiet night. We hope that this is just what she needed to feel good.

Love, Brad

Making Adjustments

We have found ourselves back in the hospital again. Carly had a few decent days after her shunt surgery last week, but she continued to have what looked a bit like a seizure throughout most days. She became less interested in eating over the weekend, and her oxygen saturation levels were unusually low. We had to start oxygen support at home for the first time ever. Yesterday she had a period when her heart rate was very low, and a larger seizure looking episode so we knew we would need to come to the hospital today.

Carly spent most of the day here hooked up to an EEG to see if her episodes really are seizures. This monitoring will continue over night, while Carly also gets fluids and antibiotics to help treat a lingering UTI as well as an upper respiratory infection. Tomorrow we will try to determine if she should have a change in her seizure medications, and if any changes should be made to the shunt opening pressure. Hopefully the plan will have Carly feeling better soon. Thanks for the love and prayers that you have been sending her way.

Love, Brad

Slowing The Flow

Carly continued to have trouble adjusting to her new shunt, and for the first time ever the issue was too much flow when she is upright. Thanks to the new, larger tubing the shunt is working but the valve we have been using was purposely chosen to be as simple as possible and did not have a component that prevents over draining when upright. Carly was not able to adjust to this low pressure and she could not be upright for more than 10-20 minutes before she would start having what looked like seizures. Over the last few days she was getting worse, so today she headed back to the OR for a new shunt valve. This valve has a mechanism to prevent over draining and it is also has several pressure settings to fine tune it to her needs.

The surgery went well and Carly is resting in our favorite room at UCSF. She is still having the seizure activity that we saw before surgery, which we hope is just part of re-adjusting to a more normal pressure. It has been a tough stretch for her recently and hopefully this is the beginning of an improving trend. We are envisioning her with a smile on her face, a big appetite, and able to get out and about to spend time with her friends and family. Her strength, and the strength of Team Carly, will help get her there.

Love, Brad

Missed

Carly has been slowly recovering from her most recent shunt surgery and pneumonia. Her respiration sounds much better and is nearly back to normal. The new larger shunt tubing seems to be making a difference, and when Carly is sitting upright we think it is flowing briskly. This is affecting how she feels too, so it is a matter of trial and error as we figure out how long she can be upright and when we need to lay her flat. Hopefully this is something that she grows accustomed to over the coming weeks and she can be upright as long as she likes. It is nice seeing her more awake and smiling more each day.

January 27 is a day that we will always think of our dear friend Tyler Palmer. Five years have now gone by since the day we all lost him. He meant a lot to many people, and we miss him terribly. He was a great son, brother and friend and I am proud that our son Kempton can carry the middle name Tyler. In honor of him go enjoy the outdoors, make a conscious effort to do something that helps our planet, give someone a big heartfelt hug, and take a step toward following your dreams. We love you Tyler.


Love,

Brad

Something New

In the days since Carly's birthday she has continued to be under the weather. The antibiotics may have been helping her pneumonia, but she continued to be really weak, sleepy and had little interest in eating or drinking. By yesterday morning we decided we couldn't put off a shunt surgery any longer. She went to the O.R. yesterday afternoon and Dr. Gupta replaced all of the shunt hardware. This time he tried something different, replacing the belly catheter with tubing that is typically used for drainage of abdominal cavities. The tubing is a lot larger in diameter, with an area that is over 6 times larger than shunt tubing. The hope is that this larger area will prevent the tubing from clogging, giving Carly more time between shunt revisions.

Carly has been recovering well, with things being a little more complicated because she is also fighting off pneumonia and a case or rhinovirus (the cold.) Because of these other issues, Carly spent last night in intensive care (the PICU.) We are still there now and will be here for another night. If she shows improvement tomorrow she will be sent home to continue her recovery there. It is good to be trying something different that shows promise at helping address the shunt clogging issue. Hopefully this is the beginning of a long stretch of better days for Carly.

Love,

Brad