Saturday, February 13, 2010

What's up With Her Cheek?

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

Week 6

Week 5

Week 4

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 Wish us luck and prayers.


  1. We will be thinking of you guys and especially Addison and wishing you guys the best outcome possible! She is a beautiful baby with or without one big cheek!! Keep yourselves in good spirits because Addison will need lots of smiling faces to look at :)

  2. Anytime our children have issues it is very stressful. You are doing the best you can with the options available. You can see she is a beautiful baby despite the hemangioma. Give her extra kisses from us! And big hugs to you and Ryan for the stress and challenges ahead. Much love, Jo Ann & Family

  3. OMG. I didn't even notice that her cheek was big in the pictures - just thought she had chubby cheeks! I'm so sorry that you are going through this with Addison. There is nothing worse then worrying about the comfort and well-being of your baby. I will pray and pray for you.


  4. HAPPY BIRTHDAY!! (Just in case you didn't get my messages.) Hope it was a good day. Can you guys already see the progress of Addison's hemangioma shrinking? How did she do with week two of treatment? I hope everything is OK. Oh, and Brooke--how come I never knew anything about you having your gallbladder out? What the heck, man! Call me..

  5. Brooke, I'm so sorry. I hadn't seen your blog in a little while and a lot has happened. What a tough beginning to motherhood. Everything else is going to be so easy after what you guys have already been through. Good luck with the chemo. You guys are in our prayers.
    Love, Jen

  6. Checking in to see how things are going. BTW the Children's Museum in town is great.

  7. Hey brooke! I just wanted to let you know that you are in our thoughts and prayers! If there is anything we can do for you please let me know! We miss you guys so much! Love you! Please keep us updated! Love you!

  8. Bill and I were in Brooking's yesterday and spoke with your grandma. I had no idea! Our thoughts and prayers are with you. I'll check out her blog to see how she is progressing. We love you!