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