Sclerotherapy Procedure #1

Today is a day that JT and I have been anxiously anticipating. We have been ready to get this process started so that we would have an idea of how it would help Will and how quickly we could move forward. I'll get to the long story of all of it for the rest of this post, but for anyone that wants a quick answer...it didn't work. We are pretty upset, but we know that this just marks a possible treatment off of the list and we will continue looking for alternatives.

We rolled Will out of bed this morning and left the house at 5:30 to be at Vandy by 6:00. He kept asking if he was going to get a shot, and I was happy to tell him that he was not (not that he would be awake for anyway). He wasn't too excited, but he got in the car with Woof-Woof and Whiskers without too much of a fight. We got there a little early and went to see the trains - Will's favorite! Then we headed up to the dreaded 3rd floor. (JT and I say this our least favorite place at Vandy. We don't ever seem to get great news here.) He was in a great mood through check-in and pre-op. The nurses and surgery team were are wonderful as always and Will seemed comfortable with them. Dr. Barron came and met with us and explained the procedure again. He was going into Will's lower back to hopefully find some veins that could clot off. His plan was to go slow and just see what he could do. He didn't want to do too much at once since the goal is to help Will, not hurt him. He also didn't want to be too close to the spinal cord. It would take about an hour he said. Will was very brave and drove himself and Whiskers to his operating room (no tears!).

Checking out his car that the nurse brought him.

Off they go to the OR! Whiskers had the perfect spot to ride with him. 

JT and I went to get some breakfast and then headed back. We stopped by the gift shop so JT could get Will "baby Woof-Woof" that he has been wanting. Right as we were getting in the elevator, they called to say Dr. Barron was ready to meet with us. He came in and said that Will was doing great, but he wasn't able to do anything to help him. I think it is safe to say that we both felt punched in the stomach right then. So the explanation was that the vessels on his back/buttock are lymphatic, not venous. You can't clot lymphatic vessels. He went to several different sites, and the result was always the same. These different types of vessels apparently couldn't be differentiated on the MRI.

Baby Woof-Woof

We got to see Will about 30 minutes later. I almost passed him by because he wasn't crying hysterically as with all of his other post-ops. He was sipping on his Sprite asking to take his IV out. We gave him Baby Woof-Woof and he was excited about that. We got him dressed and spoke with Dr. Barron again. We asked if we could go ahead and plan a procedure for the leg since it is obviously a vein, but he didn't seem like he was ready to do that. Will is "complicated" in his mind, so I think he probably isn't ready to attempt to take on Will again until we talk to Cincinnati.

I think that I am so frustrated because I have put Will though a lot since the end of December. We have been to Vandy almost every week for an appointment, lab work, consultations, etc. (I have a post about all of this that I will try to get on here in the next day or so.) I am just trying to look at it as information that we already have to continue moving forward with a new plan.

Thank you for the thoughts and prayers! As always, Will is fine. He was playing normal as soon as we got back home.

"Am I going to get a shot?" -Will

Poor Will, he asks this question every time we go to the doctor now. By shot, he means blood draws. A shot would be much less traumatic!

The info that I am about to list is more for my knowledge and everyone may want to skip over. I need all of this documented so that I can always remember what was happening as we move along through this process.

At the end of December, Will had lab work to check his hemoglobin and hematocrit to make sure that he isn't anemic from blood loss. He has urethral bleeding so we often see blood in his underwear and he has had rectal bleeding at times. The doctor went ahead and did a full lab work up on him just to have some baseline info. This showed that he was not anemic, but his D-dimer was high along with C-Reactive Protein. The D-dimer means that he is at a higher propensity to clot, and it may also be elevated in the presence of a clot. C-Reactive Protein is a marker of inflammation. When Dr. Snyder and I discussed these labs, we thought these might be high because Will may have had an active clot going on - we had thought this was happening in his scrotum or rectal area since he was in such severe pain over Christmas. With a high D-dimer, Will was going to have to use Lovenox injections (blood thinner) before and after sclerotherapy procedures.

At the beginning of January, Will and I went back to Dr. Snyder's office for Lovenox injection training. I give shots almost daily at work, but the thought of giving it to my child makes me panic! These would have to be done every day for 7 days before procedure and 7 days after procedure. Dr. Snyder wasn't really sure she wanted to do this since he bleeds a little anyway, so we decided to do the lab work again. The D-dimer this time was still elevated but improved. We decided not to do the shots for this first round of sclerotherapy since he was getting closer to normal and risk of bleeding vs. benefit couldn't really be justified. Yay for me (and Will)!

With that round of lab work, Dr. Snyder noticed that his aPTT has been elevated at all of the lab draws so far. This led to further investigation. Her explanation was that he clots slowly in the test tube and she needs to know if he actually does that in the body. Back to the lab for us and this time they and to stick him 2 times because they had trouble getting his blood. He wasn't happy, but he left with 4 band-aids, and even Whiskers got 1! They mixed his blood with some "normal" blood and re-ran the test. The results that time were normal so this told us that Will has an issue with a clotting factor. But they didn't have enough blood to run the tests to find out which clotting factor.

Back to the office for more blood work - this time he actually refused to go. I bribed him with everything that I could think of and finally after lots of "no's" and tears (from both of us), I finally convinced him with a Disney app that he has wanted on the iPad. The results were that he is deficient in Factor XI. If you want to be deficient in a factor, this one is a good choice - easily fixed during procedures with some plasma if needed.

The nurses in the lab know him now. They do an amazing job! They are so kind and so comforting. Will's favorite person is Katie. She is a Child Life Specialist in the Cancer Center and she certainly has a gift! (Dr. Snyder is an oncologist, so that is why we go to the Cancer Center - no concerns for Will on that part!) She tags along with us and she and Will play games on her iPad. He screams and cries when the needle sticks, but then he just cries while playing whatever game they are doing. And the tears are dried up by the time he is picking out his band-aid colors. He is such a trooper!