Sunday, August 30, 2009

"da-da"

Where's the love for "ma-ma," huh? This is only a small part of her little conversation. Yesterday she said "hi" very clear and direct to David and me. It was so randomly cute!

video-

Thursday, August 27, 2009

follow-up & Twinkle Twinkle Remix

Today we returned to see Cali's doctor, who said that Cali responded well to the sclerotherapy. For now, she wants to wait for the lymphangioma to continue shrinking. We return for another follow up in a few weeks. No more treatments are scheduled yet.

Here's a "Twinkle Twinkle Remix," performed by Bria to her thrashing, rolling audience.

video

Tuesday, August 25, 2009

feeling better

About a week after her first sclerotherapy treatment, Cali looked and felt much better. She was so much more happy and active. In fact, now she's even a bit sassy and sometimes naughty! She loves climbing up onto everything and trying to fall off the bed/couch/anywhere elevated.

We return to the hospital for a follow up on Thursday. We'll keep y'all posted!

Here's a brief, boring video; I tried to catch her playing peek-a-boo with me but she bumped her head on the door instead. Luckily she gets over things quickly.

video

Thursday, August 13, 2009

round 1

After calling and driving and persisting we got into the pediatric radiology specialist (supposedly "the best in the country"). She took one look at Cali and said, "Yep, she needs sclerotherapy. We can do it tomorrow."

So at 6 this morning Cali and I headed to Dallas Children's where she had her first round of therapy. She had to go under general anesthesia, get an IV and breathing tube; then they drained her lymphangioma [again] and re-injected it with doxycyclin, an antibiotic that's supposed to scar her lymph channels and shrink the thing down.

Post-op Cali is very uncomfortable and sad ... But after a couple of weeks her face should shrink down. We hope that she bounces back quickly.

We will follow up with the specialist in 2 weeks, then most likely do the whole procedure over and over again until it's gone. Even after it shrinks Cali may need cosmetic facial surgery to repair stretched skin, but that wouldn't be for a few years. Luckily she's still "growing into her skin."

Here are some pics pre-procedure. We hope she feels cheery again soon.



Tuesday, August 11, 2009

sclerotherapy

Cali's growth is rebounding quickly. Even though we now know it's a lymphangioma, we don't have any quick solutions. The surgeon shot down surgery due to 1) the high risk of damaging her facial nerves, and 2) the lymphangioma's thickness and depth.

The only solution, then, is sclerotherapy. It's an injection into the lymphangioma that supposedly makes it shrink.

We are busting our tails trying to get her in, but it's really hard. We are hounding doctors, driving all over creation (we drove over 100 miles today to 2 children's hospitals) and still no results.

And like I said, the lymphangioma is growing bigger hour by hour. I can't stand to watch it grow huge like before without any solution. Please keep Cali in your thoughts and prayers.

Friday, August 07, 2009

it all fits

Cali's growth is a lymphangioma, specifically, a cystic hygroma (a subset of lymphangioma). From hindsight, the symptoms make total sense.

Here's wikipedia's entry for "lymphangioma," edited.

"Lymphangioma is a lymphatic malformation, a benign proliferation of lymph vessels. Lymphangiomas are fluid-filled sacs resulting from blockage of the lymphatic system.

It is often removed by a form of surgery using an electric current electrocoagulation for cosmetic reasons. It is rare, incidence being estimated at around one per 10,000 live births.

These tumors may occur anywhere, but around 75% occur in the head and neck regions, with a predilection for the left side. Most (around 90%) are either evident at birth or become evident before age two years."

We are returning to the hospital to meet with a lymphatic surgeon on Monday.

Wednesday, August 05, 2009

the hospital

Long story short . . .

Cali's "hemangioma" was growing incessantly. It was so large, hard and tight that it was causing her extreme pain. When the doctor saw her photos (emailed) he wanted to see her the next morning (Sunday) in his office. Once there, he sent us straight to the children's hospital.

Over the next few days Cali received an IV, blood work, an MRI [scan of her face], and a biopsy [small sample of tissue surgically removed]. They also started her on some heavy duty meds.

We will learn the results from the biopsy tomorrow--so more info to come--but their latest diagnosis was that it is not an hemangioma but a rare lymphangioma. It is not a growth of tissue or blood but a mischanneling of her lympahtic vessels. The fluid instead collects in her face. During the biopsy the surgeon drained the fluid, thus releasing the pressure and Cali's pain. But, as it will soon fill again, a large area will need to be surgically removed and she may need radiation therapy.

Again, this prognosis is all assuming that it has to do with her lymphnodes. More to come.

It's definitely been scary and sad. But Cali's been a trooper, and we have received great care from the doctors and nurses. We are thankful the Cali will no longer need steroids or chemotherapy.

Thank you for your love and concern on our behalf. Below are Cali's pictures as the growth continued and at the hospital.


The night before she was admitted to the hospital. If you can believe it, the thing grew even bigger the next day.



Pre-surgery in her hospital gown









The fluid drained