So that's a question I've heard over and over for the last few weeks. Mostly it's been kids who even though they are tiny I still feel like pounding them when the words come out of their mouths. So look at the pictures below and notice Addisons right cheek, viewing the picture it would be the left cheek.
Week 8Week 7
Ddi you see it shrink as we went back through time?
We marked December with a c-section and Addison's arrival, January by having my gallbladder out, and now February with Addison having a pic line placed and the start of her chemo. To say the least it's been a busy three months. We are hoping that the subsequent months are slow and boring.
It's time I did a post on Addison's condition. Maybe you've notice that in some of her more recent pictures the right side of her face seems a bit bigger than the left and that's because it is. When she was three weeks old I noticed what I thought was a red rash by her right ear. We were at church right before she was blessed. But the rash never went away and I noticed it was in her ear as well as behind. As it kept growing I realized it was a strawberry hemangioma. Sure enough the Dr. confirmed that it was a hemangioma,a non cancerous tumor or mass of blood vessels. He said it would keep growing until she was one and then gradually fade over the next few years.
We have been watching the hemangioma grow profusly over the last three weeks. We were not satisfied with the "watch and see" treatment and went back in to the pediatrician. He said it was definatley different than what he thought over the phone but still he said we should wait and see how it behaved. He sent us to an ENT the next day who said it wouldn't effect any of her functions it was just cosmetic. It was starting to close off her ear canal but he said you only need one good ear to hear from and that it shouldn't delay her speech. I was unimpressed and since the mass was starting to disfigure my baby's face I went home and furiously googled hemangiomas for the second time and discovered that there is a Children's Hospital three hours away from us that specializes in hemangiomas. I called last Friday and they set up an appointment for this last Monday.
We drove down to Milwaukee and the Dr. who specializes in hemangiomas said the kids hemangiomas which they termed "bad" were 54cm and Addison's measured 68cm. Yikes, beyond bad. The Dr. said it definatley needed treatment (exactly what we were looking for) as it was only going to get worse seeing as it took three weeks to get this big and it would continue to grow until she is eight months old. We were give three treatment options. After mulling over all three, their side effects, and outcomes we have decided to put her on a Chemotherapy treatment. I know, saying it in black in white, "we are voluntarily giving our child chemotherapy" is a very scary and sobering thought.
So two days ago, on Thursday we drove back down to Milwaukee and began her treatment process. She could have formula until 2am and then only Pedialite until 6am. Her appointment was at 8am. She was first sedated and an Echocardiogram (an ultrasound) of her heart to make sure her heart murmer was nothing to worry about. Then they sedated her again and placed her PICC line (an IV line that stays in her little arm for the whole treatment time line). Next she was given anethesia and had an MRI and finally she was given her first chemo treatment. Needless to say it was a very hard day. I think I can safely say it was the worst day of my life. She was super groggy the rest of the day, we got done at 5pm, and slept most of the time. The next day she was up and smiling and cooing which made us feel so good. However, today we can tell she definatley doesn't feel good. We are trying to keep her comfortable.
Addison's treatment should last for 18 weeks. Each week we'll go down to Milwaukee and she'll be given another round of Chemo. This treatment is the only one which not only stops the tumor growth but will shrink it by 90% as well. Teh remaining 10% should slowly regress over the years until you can't notice it at all.
So there's the explanation as to why you will see a difference in her pictures. If you would like more information on hemangiomas and the treatment we are undertaking visit Addison's blog to watch her progress at http://www.bumpcourage.blogspot.com/. Wish us luck and prayers.