Kaiden's Journey with Cystic Hygroma (Lymphatic Malformation): The journey begins...

The first few weeks after his birth are a blur now. Between feedings, changing, visits and no sleep I barely remember anything. I remember people not caring about his neck being chubby, that was the best part of all. I didn`t really know how people would react. But our family and friends were amazing. They still loved the little dude no matter what.
We had a follow up appt scheduled for Dec to meet with the pediatric surgical team to discuss treatment for Kaiden's cytic hygroma. Over the next few weeks, the cysts doubled in size and we had the appt moved up a week. The consulation went well, and seemed very positive. The dr said he's treated many of these, and some much larger. We would start with draining the cysts and injecting bleomycin to scar them. The first happened right before Christmas. We thought we would get the best present of all - a new chin for Kaiden!! Kaiden wasn't sedated for this one and they drained 100ML of fluid from his neck. It wasn't that noticeable at all. We were incredibly frustrated and dissapointed that we couldn't see any difference. We had been counting down the days for this injection in hopes of seeing real results. I can`t even explain how upset we were that nothing seemed to change. We were SO let down!
The second (Jan 6th) and third injections (Feb 22nd) he was sedated and they drained 50ML of fluid. Still not very significant results. A catscan revealed a lot more cysts than they had expected. There wasn't much difference after the injections and we started feeling frustrated with the results. It`s not just a quick appt. You have to starve your child for 8 hours before, and hang out in the hospital for an entire day. It was very draining on all of us. And not seeing results made it even worse. All this effort, for nothing!
We were told at the initial consultaion that they have seen this a lot and treatment is fairly simple. The dr is just as frustrated as we are at this point. He wanted to consult with another dr who has done these cases with him to determine future treatment. He advised that surgery will probably happen at some point, but may not even remove everything. It's terrifying thinking about your little baby under the knife, and possibly not even completely treating him. I would hate to see him go to daycare or school and be made fun of or have people stare at him. I just want to protect him as much as I can. I would give anything in the world to get rid of this, but I can`t. Just time and patience...

Kaiden at 2 weeks old