Good Times Around The Bend

Carly has had several calcium checks over the last few days and fortunately each time it has been in the normal range (meaning we could stay out of the hospital!). She also had a pre-operative MRI today which will be used to help with guidance during her surgery. This evening while Carly and I were dancing (a daily ritual) I heard these lyrics from a String Cheese Incident song that seemed perfect for this week:

"Sometimes it seems like such a hard life
But there's good times around the bend
The roller coaster's got to roll to the bottom
If you want to climb to the top again"

We all can't wait to round the bend and make our way back to the top.

Love, Brad

Here Comes The Sun

We anxiously waited for the results from Carly's noontime blood lab, and when they came back with a normal calcium level we were thrilled that it was low enough to go home. As we turned the corner and headed towards our house, Carly couldn't help but smile as the the sun warmed her face.

The mystery of her high calcium is not solved, but since her tumor surgery is so soon they were willing to leave the mystery unsolved for now. We will closely monitor her calcium with daily labs, but expect that the medication they gave her will keep it in the safe range for the week. We will all sleep well tonight, that much is certain.

Love, Brad

The Calcium Chronicles

Carly continues to be a little mystery. We have spent the last three nights in intensive care as they try to bring her serum calcium down to a safe level and figure out why its regulation got out of control. There are several reasons why someone can have hypercalcemia (high calcium) but none of them seem to make sense in Carly's situation. They do know how to manage hypercalcemia using IV fluids and a few medications and they were able to get Carly's calcium back to a more normal level, but it slowly creeps back up when the IV is turned off . As the calcium level came down the improvement in Carly was pretty immediate and she even gave us the gift of a few smiles.

The plan is to try to find a way to stabilize Carly's calcium without IV fluids so we can go home to rest before her big surgery. Hopefully that can happen later today, but it is not certain. If we do go home we would need to come back daily for calcium checks, but that is a small price to pay for a good nights sleep in our own beds. The tumor resection surgery is now set for April 3 and we'll be calling on all of the prayers and positive energy that can be mustered to get Carly through that day with the best outcome possible.

Love, Brad

The Hospital Gets Us Again

Well, we knew that Carly wasn't feeling well but we were hoping to avoid the hospital until next week. Unfortunately her body had different plans. Carly started being particularly lethargic on Monday and during the night she started to refuse to eat which is very unlike her. Because of her issues with sodium regulation she cannot go without eating for long so we had to bring her into the emergency room yesterday. The neurosurgery team checked the function of her shunt and ruled out any issues related to it. They also ran some blood labs, primarily to check Carly's sodium level, and while the sodium level was good the calcium level was dangerously high. The endocrinology team isn't sure why this happened as it has never been an issue for Carly in the past, (they actually said that they have never seen anything like with with any craniopharyngioma patient) but she clearly needed to be admitted to get her calcium back to a normal level. She is getting IV fluids to help flush out the calcium and it is already trending in the right direction. Her tumor surgery is still scheduled for late next week, and we are hopeful that the calcium issue will get resolved in the next few days so we can get home to rest up for that.

Love, Brad

Bath Time

Carly still isn't feeling great, but she did enjoy her bath over the weekend. She may not have a lot of hair on her noggin, but she loves a good sudsing!

Today we spoke with Dr. Gupta and discussed the plan for the next surgery. Because Carly's tumor is growing so quickly (a rare thing for a craniophryngioma) he thinks that her best chance at a cure is total surgical resection. This is the consensus from all of the surgeons that we spoke with, so we feel comfortable this is the best choice for her. What this means is that he will be pretty aggressive in trying to remove all of the tumor, and given all of the critical structures that the tumor is near it is something that only a highly skilled neurosurgeon can do. This will be the biggest and most difficult surgery that Carly has had and he expects that it could take as long as her first tumor surgery (15 hours.) The date is still not set but at the latest it will be next Friday, April 3. Carly didn't have the best luck with her various shunt revisions needing many surgeries in a few months, but we are thinking that is because she didn't want to waste any good luck on a little shunt surgery. She's been saving up her luck and combined with the love and prayers from of all you there is nothing but good times around the bend.

Love, Brad

March Madness

The last few weeks haven't been as peaceful as we had hoped. Carly's shunt seems to be working because her fontanel remains sunken for most of the day, but every morning she has a round of crying that we expect is from increased cranial pressure. Fortunately the pressure drops later in the day, but Carly is clearly not feeling great most of the time.

We were expecting to meet with Dr. Gupta yesterday to discuss the specifics of the upcoming surgery, but unfortunately he was sick and we had to postpone until Monday. Regardless of the outcome of our meeting, it is clear that Carly's surgery will need to be moved up from the previously scheduled date of April 8. All of these details should be set on Monday, in the meantime Carly is getting a lot of cuddling.

Love, Brad

Happy St. Patrick's Day!

Carly celebrated her McCarthy roots (Christa's mother's side of the family) and marked the occasion with her festive hat and a dinner of mashed kiwis (ok, so that's not Irish but it is green!) She sends a hearty hug out to everyone, and a pinch to those who forgot to wear green.

Love, Brad

Birds Of A Feather

I know we just posted a picture of Carly napping but we couldn't help ourselves. Carly had a checkup with the general pediatric surgery team yesterday to make sure her lung was completely healed. The chest x-ray showed that she has healed perfectly so that chapter is now behind us.

In preparation for Carly's next surgery we have been checking with the other major centers for pediatric brain tumor treatment to see if there is any additional insight for Carly's treatment. Dr. Gupta recommended we speak with the teams at Boston Children's, NYU Children's and St. Jude and all have been very responsive in evaluating Carly's case. We will meet with Dr. Gupta next Thursday to review all of the input along with his recommendations to finalize the plan for the next procedure. We continue to visualize the day when Carly will be tumor free.

Love, Brad

Sun Day

Carly's favorite part of the weekend was her time spent outside, including a Sunday afternoon stroll/nap in the sun. She was particularly happy as she sat out back in "Carly's Garden" soaking in the healing love that everyone put into this special place. Her third tooth came through in the last day which was not a highlight of the weekend for her, but she persevered like a little trooper. Her shunt is working and she continues to regain her strength after the recent trips to the hospital.

During our last trip to UCSF, Carly had a routine MRI checkup to monitor the tumor growth. These images show that the tumor is growing faster than they would expect from this type of tumor. Because she is so young everything is growing quickly and the tumor seems to be no exception. While Dr. Gupta would have liked to wait longer before performing the second tumor resection, he believes that the advantages of waiting will be outweighed by the problems that the growing tumor may cause. He is recommending that the next major surgery be moved up to April 8, when they will attempt to totally remove the remaining tumor. Between now and then we will continue to shower Carly with love and help her build up as much strength as possible to help get her through the long procedure.

Love, Brad

Home

Carly's lung is back to normal and the shunt is functioning properly so we were discharged once again on Tuesday evening. The walk home from the hospital never fails to lift all of our spirits. Carly is clearly happy to be home again and is full of smiles. We are hopeful that Carly will get an extended period of peace which she deserves.

Love, Brad

Oh Boy...

We were thrown a curve ball this morning. We were hopeful that Carly would be discharged this afternoon when they ordered a chest x-ray. We were not really expecting this and we learned that they were concerned that she had a collapsed lung. The x-ray showed that her left lung was collapsed down to only 1/3 its normal size. It turns out that while they were poking around trying to place her shunt catheter during her surgery last Tuesday they nicked her lung creating a slow leak that led to the collapsed state revealed by the x-ray. We were obviously not expecting anything like this and we couldn't help but wonder why this wasn't found earlier. She was taken back to the OR around 2 PM to have a chest tube placed between her ribs into the space around her lung. The chest tube was connected to suction and fortunately her lung returned to near it's normal size within the first hour.

The chest tube will stay connected to suction through the night and Carly will have another chest x-ray in the morning that will hopefully show that her lung is back to its normal state. They will then remove the tube and give her some time without suction before another x-ray to verify that all is normal. If it is, she will get the green light to go home. She remains remarkably strong through all of this.

Love, Brad

Resilient

Carly's surgery lasted about three hours and went well. They found that the drainage tube from the shunt valve into her heart was not flowing freely. It was either blocked by a small clot or the end was pressed up against the wall of the vein, restricting the flow. They replaced this catheter as well as the shunt valve and the ventricular catheter as a precaution against infection. Carly is feeling pretty good already and offered up a few smiles at her penguin Waddles.

Love, Brad