Monday, September 17, 2007

First in Families of Durham Rocks! (and Medicaid is a pain)

This all started when a coordinator from the Durham county health department got in touch with me a couple of months ago to help us get Ethan's occupational therapy at home and assist with any of his other needs. We got the OT going (his therapist is awesome) and the Coordinator called me to ask how things were going and if I needed anything else.

I excitedly told her about how I had found some other parents online to email with about their children with Tufted Angioma's and she asked if I could talk with them over the phone. I explained that they're in other parts of the world and that I was going to get Skype up and going, but that I had to buy a headset first. She told me that there is an organization that would actually be willing to buy that for me so that I can have some kind of access to a support network and asked if there were any other items that we needed help purchasing. I mentioned that Ethan's occupational therapist thought it'd be a good idea for him to have his own toys to prevent spreading germs... so she said we'd include that, too.

Wednesday, August 29, 2007

Discouragement and Encouragement

On Friday we took Ethan to see the orthopedist bright and early for his appointment. When we got there, we took off his splint (which had slipped down a little during the night) and his leg looked really swollen. While we were waiting for the doctor, I called over to hem/onc to see if we should bring him in to see what was going on with the swelling. His regular doctor was in a meeting, so the doctor that took the call told us just to stop in after we were done with the orthopedist and they'd take a platelet count. The orthopedist said that he thought he'd done everything he could do for Ethan until the tumor issue was resolved. He said to keep the splint and use it when we needed to.

Once we got to the hem/onc clinic and were checked in, Ethan's leg started looking less swollen and I realized that it may have swelled up somehow from the splint slipping down. We went ahead and stayed anyway to be sure.  When the doctor finally had time for us (we didn't mind waiting since we were an "add-on") she took us into a room and told us that she didn't think the leg looked that bad. Before I could even tell her about the splint, she told us that we "really needed to get on a regular schedule of visits because they just don't have time for us to be dropping in on them like this." Understandable. However, I distinctly remember when he got his second sclerotherapy, they took a platelet count while he was in the hospital and it had dropped down to 67,000. They called his hem/onc doctor, who dropped in fairly quickly, and told me they'd give him steroids before he left that day and that I "shouldn't let it get this bad" and to "call and come in for a platelet count whenever you think it's getting bad." Well, I thought it was swelling, so I brought him in.

Tuesday, August 21, 2007

Second opinion at Duke

The appointment today at Duke went well. The doctor gave us his opinions about Avastin and Interferon. He said that he would NOT suggest Avastin unless Ethan was part of a clinical trial because they do closer monitoring that way and can use other patients as a basis of comparison. And that he, nor his colleague at the vascular anomalies center (VAC) in Cincinnati knew of any clinical trials currently happening. He said he thought that Avastin would be an absolute last resort. As for the Interferon, he said that he thought that would be the next step he would take. I expressed my concerns about the side effects and the uncertainty of the long-term developmental side effects for children and he agreed that it is fairly uncertain what they are.

We also talked about the possibility of taking him to a VAC and he thought that was a great idea. He said that he could recommend the one in Cincinnati because he knows a doctor that works there but that the other two centers (Boston and New York) were equally as good.

Friday, August 10, 2007

Four different appointments this week!

We went to four different appointments this week. Two on Wednesday, one Thursday, and one Friday.

On Wednesday, we stopped in at Hem/Onc to get Ethan's blood drawn even though our doctor is out of town this week. Then we headed over to Vascular Radiology to see the doctor over there. I mostly got to talk with his assistant guy (not sure of his position), who has had a fair amount of interaction with us in the past. We, again, talked about where to go from here. I told him that I thought it would be a good idea for them to give Ethan another MRI to see what kind of differences the last three sclerotherapies have done before we decide whether or not to do another.

He also explained to me all the scientific reasons that all of the doctors thought it was a good idea to try the Avastin (an adult cancer drug that is completely experimental as far as the use in children). I had already read all about that. I know why they think Avastin is a good idea... It prevents the formation of new blood vessels/capillaries, etc. and since his tumor is vascular, they think it will prevent new growth. So, after listening to this long scientific explanation of stuff I already know, I explained to him that they don't know how the Avastin will affect a developing child in the long run and I don't feel comfortable experimenting on him, especially when his situation is not life-threatening right now. He did understand where I was coming from with that.

Thursday, August 2, 2007

A second opinion or third?

So I've decided since I don't like the options they are giving me, and I am going to take Ethan in for a second opinion. We've set up an appointment at Duke Hospital for August 21st. The only crappy thing is, is that the doctor we are going to see, the only doctor there with any special knowledge of these things, is leaving the hospital on September 1st.

I've been doing some research and have found that there is a special children's hospital in Boston that deals with these things. They see children from all over the world. Depending on what the Duke doctor says, I may see if Ethan can go to Boston.

The doctors keep saying he'll grow out of this.... we just don't know when.

Tuesday, July 31, 2007

Starting a journal

Today as I was going through hundreds of hits on Google about my sons conditions, I found a link to a LiveJournal account.  I started reading her journal, and once I got past the feeling like I was intruding into a strangers personal life, I finally felt like there was at least one person in the world that knew exactly what I was going through. I spent a lot of today reading, understanding, and empathizing. I must admit, I also shed a few tears for this stranger's child.
O.K. so enough with this justification of starting this. I've decided that it is important to keep track of Ethan's medical stuff and this is a great way to do it, along with getting out my frustrations and feeling like I actually get to talk, even if I'm just talking to myself.

I want to catch up with Ethan's medical history:

When he was born on Oct. 15th, 2006 we noticed what looked like a bruise on his lower right leg. They told us to keep an eye on it to watch for growth, which it did.