Avery's Surgery

Hi Family & Friends,

Thank you all for your concern and prayers for Avery and her arm. We have been going through a roller coaster of emotions for the last month... as most of you know this "lump" has always been on her left arm at the elbow area. She was born with it, but it was always so small & mushy - almost just like a fatty lump, and we didn't think twice about it for a long time. Then when she was one or so, we started asking the doctor more about it - as it was getting a bit bigger. Our pediatrician told us not to worry about it - that it was called a hemangioma, and that it would not harm Avery, however it would grow in size as Avery got older. They explained it as a collection of blood vessels under her skin, and that it would need to be surgically removed one day (maybe when she was 3 or 4) just for cosmetic purposes. We didn't like the idea of surgery, but with it being so far in the future, we just decided not to worry too much. Well- that was until the mass doubled (or maybe tripled) in size overnight. This happened about 3 weeks ago, and it sent us RUNNING to our pediatrician with much concern. Of course we were scared that it was something serious now.

Our regular pediatrician was not available that day, but we saw another doctor in the practice. She told us that she was 75% sure it was still a hemangioma, but to be sure she sent us to a pediatric surgeon for an evaluation. The surgeon saw us the following morning. He then confirmed that we didn't need to worry about anything serious (cancer) but that it was actually called a lymphangioma, which is similar to what they first thought - but it involved the lymph nodes & lymphatic system. This is why it grew in size so very quickly, it was injured during play (he thinks) and filled up with blood & fluids. So, thank God that was the reason it grew so quickly. **Lymphangiomas are described as birth defects that occur while the fetus is developing inside the womb. They are malformations of the lymphatic system, which is the network of vessels responsible for returning to the venous system excess fluid from tissues.

After our first meeting with a surgeon, we decided to get a second opinion from another surgeon. This past Thursday we met with a surgeon that works out of Children's Healthcare of Atlanta. (I decided that I really wanted Avery in a children's facility) This doctor was very informative and again agreed that the mass on her arm is a lymphangioma. He also agreed that it is not dangerous to her, and is 99.99% sure that we don't need to worry about it being serious (cancerous). Though he did say that after surgery they will send off a sample of the mass to be biopsied just to be 100% sure. He told us that surgery was needed to treat the mass. Surgery will take 1-2 hours, and there are a few possible issues:

1. the mass might not be able to be completely removed during surgery, and then will probably come back again.

2. infections after surgery are common in the elbow area due to all the lymph nodes there. This would mean they will need to put a drain in her arm and keep her in the hospital a bit longer.

3. a skin graft might be needed during surgery. He is worried that he won't have enough skin on her tiny arm to close up the area, so they would need to take skin from somewhere else on her body (typically the groin area). This of course will make recovery longer, and the surgery more intensive.

Now we plan to ask more questions to both our doctor and our surgeon, and do more research before setting up Avery's surgery. However, we are thinking the surgery will be set up in the near future due to insurance issues (another long story). So please pray for us and our sweet Avery. We are praying for help & guidance in making these decisions for our daughter. Then we will be asking for prayers that surgery goes well, that the entire mass is removed, that no infections occur, and that Avery does not need a skin graft during the procedure. Please keep Avery in your thoughts and prayers. We know the power of prayer is amazing, and we need them now. Clint and I are both worried, scared, and wish we were not in this position at all. But we have faith that our Avery will be just fine and that we will get through this scary time in our lives. Thank you all for your calls, emails, and concern, it means the world to us that we have such amazing friends & family.

Love,
Sarah, Clint, Avery & Hunter