Thursday, April 29, 2010

Catching up

Off and on during the past few days, we noticed that Summer seemed to be spacing out and unable to focus and grab things out of our hands. We attributed it to being tired as a result of a growth spurt and weren't immediately concerned, especially since it was only happening some of the time.

Yesterday, Wednesday, I made an appointment with the pediatrician for Thursday morning, but by the time I got home on Wednesday her vision had very rapidly declined. Wednesday morning, she woke up before I left for work and was definitely able to focus on me. By the time I came home on Wednesday, she didn't seem to be focusing at all. When I asked "where's Daddy?" Summer could not point him out, even though he was sitting just a few feet away. We immediately packed up and headed for Seattle Children's Hospital.

We were seen by a pediatrician and a neurologist in the triage room and admitted overnight, with the hope of getting an MRI for Summer that night or early Thursday morning. After a restless night, with lots of poking and prodding, we found out that the MRI wouldn't be until 3:30pm. While we waited, we were seen by an ophthalmologist, who did some tests and told us that Summer did have some vision, but not the level of visual attentiveness they would expect.

We expected to send her in for an MRI and spinal tap (in case they saw something in the MRI that would require testing of the spinal fluid), which would have taken about an hour. We sat with her while they put her under, which was an extremely traumatic experience for Jason and I, but Summer was out before she had the slightest clue what was happening. Twenty minutes later, the neurologists came looking for us and, as the neurologist said, "blurted" out the bad news. Summer has a mass in her brain. They wouldn't know what it was until they did a biopsy, but the spinal tap was no longer necessary. They sent Summer directly off to get a CT scan, and a team of neurosurgeons came to talk to us right away.

Based on the MRI images, the head surgeon thinks the mass is a cranialfrangioma (sp?), which is a type of cancer. There is a small mass behind her pituitary gland, with a cyst coming off of it. The cyst grew to a size where it was putting pressure on her optic nerves, which is what caused the decline in vision. They decided to take her in for surgery as early as they could get her into an OR.

She had time to barely wake up from the first round of anesthesia before they put her back under for the surgery. She is still in surgery now, as I type this. They are opening her skull and following a "natural pathway" between the lobes of the brain to get to the mass and cyst. Because of it's placement, it is a relatively safe surgery - as far as brain surgeries go. They will open the cyst to alleviate the pressure on her optic nerves, and will remove as much of the mass as they can safely. At that point, they'll test the tissue and, hopefully, know exactly what it is and how to move forward.

If it is the type of cancer the doctor believes, it is very difficult to remove all of it because of the way it attaches to the pituitary gland and surrounding brain tissue. They would likely follow up with radiation in the hopes that the mass will not grow back.

We don't know if she will get any part of her lost vision back just because of the reduction in pressure on the nerves, but if it does come back it could be right away or it could take months. The doctor said that since she is so young, she has a much better chance of rebounding back to some form of her normal self. There is a not-so-small chance that her pituitary gland will not function properly, which means she'll likely be on replacement hormones to help her develop normally.

They started the surgery about an hour ago now, so we expect to see her in the next 3-5 hours. We'll be in the ICU overnight, so I may not be able to post an update until the morning. I'll try to keep this site up to date so everyone can read about what's going on.

Please keep Summer, Jason and I in your thoughts and prayers! We could use all the good mojo out there.


  1. Jason and Jessica-
    My thoughts and prayers are with you two, and Summer. This story is a tear Jerker. Hang in there, and be strong, for Summers sake.

  2. Wow Jessica - I know it sounds trite, but PLEASE let me know if there is anything I can do to help. We live about 5 minutes from Childrens. Is Dr Ellenbogen the surgeon by any chance? He is a friend, and about the best on the planet in these circumstances. Greg Berkman (Not sure why I am listed as Bro...)

  3. Jessica, I am more sorry than I can say. This is absolutely heartbreaking. My thoughts are with you and your family tonight, wishing you the best possible outcome. - Colleen

  4. Jessica, Jason, and Summer~
    We love you so much and are devastated by what is happening with Summer right now. We are thinking of you and praying for you. Logan and Claire made Summer some special cards this morning.

    The Drakes

  5. hugs girl - i can't even imagine the heartache you must be feeling. please know i'm thinking of the 3 of you and your families!!

  6. I will be praying and sending all the mojo I have to Summer. I am so sorry you guys are going through this.


  7. The Paines are lifting Summer up in prayer! My heart aches for you, please let us know if there is anything we can do! Praying for strength for you all!

    Eric, Kearney & kids

  8. Jessica, I am in shock reading your post...
    My heart goes out to you, Jason and Summer. Your family is my thoughts and prayers. I am so very sorry you are going through this.

  9. We pray for summer with all our hearts!we hope she will get better soon!
    Brianna,Trish and Michael Schwartz

  10. I am sorry that your family has to endure this. I will pray for your entire family. We all love you! Sounds like things are looking up. I have not had time to read this entire thing but will after work. Hugs and prayers are out for you. Love Nancy and Brooke ( my granddaughter)