Thursday, February 24, 2011

Next Steps

We met with Dr. Haas-Kogan from radiation oncology at UCSF this week to discuss treatment options for Carly. Radiation is the preferred treatment from her perspective and it was the consensus from the UCSF tumor board meeting, as it has a good track record of success for craniopharyngiomas. Radiation is not without issues though, and there are some side effects that we need to consider. Treatment would cause some hair loss and will likely make Carly extra tired during treatment, both of which are pretty minor. The biggest risk is pituitary damage, but Carly has already lost her pituitary gland during surgery so this is not an issue for her. The radiation can also cause damage to her vision, which is already affected to some degree, but she felt that this risk is very low. The most concerning risk is neuro-cognitive damage, which is unavoidable to some extent. Because Carly’s tumor is very small at this point the overall radiation dose and area that requires treatment are both small which will minimize this risk. Dr. Haas-Kogan believes that because of this, the expected damage would be less than 10%.

The type of radiation treatment that Carly would receive at UCSF is called IMRT (image modulated radiation therapy) which is a method that allows them to control the intensity of the radiation to help preserve nearby tissue. She would get treatments for 30 minutes each day, five days a week for six weeks. Since she would have to hold perfectly still for the treatment, and she would need to have anesthesia each time so she would also need to have a central line placed. (Placing an IV each day would be impossible.) This treatment would most likely begin on March seventeenth, and Carly could stick with her school and weekend routine during the treatments if she felt up for it.

One other radiation option is proton treatment. This is a less common treatment method and only five centers in the United States offer it. The advantage of protons is that they are very targeted, slowing down very quickly after hitting the tumor. This helps preserve surrounding tissue and may reduce some of the potential side effects that are seen in other radiation methods. We are consulting with Harvard/Massachusetts General on this option now and will see if it is a suitable alternative for Carly.

Whichever option we go with, treatment will begin soon so the tumor does not have time to grow any larger. We all know that Carly is an incredibly strong little girl, and with the support of Team Carly she will get though this. Your support also helps Christa and I each day, and we are very grateful for it.

Love, Brad

14 comments:

Anonymous said...

Its good to have some options to consider. And Carly can handle it I think - she is one tough little nugget. Sending her some lemur kisses!

Jen L.

Mindy said...

Love and strength to that little super hero. How fortunate that you have access to some of the best minds in the field. We'll be blowing extra kisses across the miles and, of course, the girls haven't stopped including her in each night's prayers. I can't wait to meet this little bundle of sweetness and strength soon, and to hug you and Christa.
Huge love to you all.

Shuman said...

Hi B&C - if you end up at Mass General please let me know. My parents are still in the Boston area and will be able to visit, bring home cooked meals and provide some support!

Sending lots of love - Shuman

letmebestormy said...

Hey guys,
We read all these updates and think of your family always. You're going to get through this. As Shuman said, we're in MA too (approx. 90mi west of Boston). Please don't hesitate to be in touch should you travel out here. We will help in any way we can.
Much love,
Cassidy

Lani said...

wow. sending so much love as you make your decision on the treatment plan. we are so close as well if you choose Mass General and will come visit as much as we can. Carly is a fighter and will get through this like she has continued to. we love you both.
xo
Lani & Chris

Becca Wright said...

wow - a baby with a solid nationwide support system! good luck with this decision. we're all here to help however we can. xoxo

Anonymous said...

Glad to hear there are good options. I'll be sending lots of love and light to all of you and particularly Carly's brain during her treatments. Big hugs,
Michelle

Unknown said...

As always, we are in full support & proud members of Team Carly. Sending our love....

Carrie & Rick

Jen Wagner said...

Geesh. I can't even imagine how tough it is to make a decision when none of the options are ideal. Whatever way you go, I know a miracle is right around the corner. Always sending love your way.

Sarah M. said...

Hey guys, All my love and support, as always - I think about your family every day and know you will make the right decisions (with your wonderful medical team) whatever they may be. All of these treatments take their toll of little Carly, I'm sure, and a strong as she is I hope you are also exploring alternative care options to help nurture that strength in her everyday. If I could suggest some basic massage therapy you could do for her at home every day to strengthen her energy - there are some great Pediatric Tui Na books/DVD's available, and I think they could help. Just a thought... love, Sarah

lala said...

Thinking of you all everyday! I'm very happy and relieved that you have the best of the best consulting on Carly. She is amazing! Sending lots of love and light......

Anne Cline

Aunt Betty and the 5 Day Cousins said...

Many of us here in Indiana are thinking of you and wishing you our love and support. Carly is one strong little girl and she is extremely lucky to have such wonderful parents!

Anonymous said...

Carly is always in our prayers. she is the toughest little munchkin we know and she's got a great team weighing her options and giving her the treatment and the love she needs. you and Christa are amazing. sending you lots of love,
keith and sheila

JerseyGirl said...

Continuing to send strength and love your way as you choose what is best for Carly.
((HUGS))