Today we were supposed to be at Penn to start the clinical trial, we did not go.

It is a very long story, but the long and the short of it is, is that Penn dropped the ball in many different areas. They did not have all of their information gathered at the same time, which required me to have to do a lot of scrambling . We do have appointments set up for next week. I am not sure if we are keeping them or not. There is a possibility that Shane really does not qualify for the clinical trial. Which is a good thing. We will have more information in the beginning of next week. For now, Shane and I are going to enjoy our weekend getaway in Washington D.C.

I know I haven't posted in a while. I think I needed a break from everything.

It seemed that everything hit our family at once and when things slowed down after Ethan's surgery, we took the opportunity to relax and just be.

That being said, Ethan is healing beautifully from his surgery. He bounced back quickly, his smiles, spirit, and spunk returned as soon as we got home. Ethan's voice is slowly returning. The doctor said it could take up to 6 months for it to fully return. he keeps asking Shane and me when he can scream again, it is very cute.

Today, Shane and I went down to Penn to meet with the oncologist. It seems that Shane meets the criteria for the clinical trial she is conducting. We actually thought that he might start today, but because of lack of communication on their part, he won't be starting until next week.

This is a placebo controlled clinical trial study, which means that 2 out of 3 patients will receive the actual drug and 1 out of 3 will get a placebo. Obviously we are hoping that he will be getting the drug. We won't know for sure for maybe a month or 2. There are some side effects of the drug that may or may not develop. We just have to be aware and know what to expect. During this clinical trial, Shane will be closely monitored by his oncologist at Penn. Scans will be done every 2-3 months to determine 1, if the tumors are shrinking and 2, if he actually is getting the drug or placebo.

We are still trying to absorb all of this information. It is a lot to take in. We will be spending a lot of time down at Penn while they monitor Shane through the study. This is a new chapter for us in this fight and we are ready!

On August 23rd, I will be running/walking with Team Frankel in the Livestrong Challenge. It is a 5k run/walk to support those living/fighting cancer. If you wish to donate, please go tophilly09.livestrong.org/teamfrankel33 and look for Team Frankel.

Ethan is home!!!!

Last night we came home from CHOP. We thought it would be this morning but we got a very nice surprise. Ethan is doing great!! He has no pain and the bruising on his neck is going away. He does have strips across the incision and they will either fall off on their own or when we go back for a follow up, the ENT will remove them.

The hospital stay wasn't too bad. We both got very little sleep, doctors and nurses coming into the room frequently. Ethan was very weepy during our time there. He was upset about all of the tubes and wires and desperately wanted to be home with Dani and Shane. I tried all my tricks to get him to play a game, color or even play his beloved DS. He wanted no parts of anything. We went for a couple walks around the floor and went to the playroom for a little while. He was very quiet and withdrawn. Anyone who knows Ethan, knows that he is vibrant and full of life. It was very upsetting seeing him that way.

As soon he he was told about going home, he perked up. We packed all of his belongings and new presents and came home around 6:30 last night. Ethan's spirit was returning. It was so precious watching Dani and Ethan see each other for the first time. They ran to each other and gave big hugs. It was very sweet. Now we are at home relaxing and happy.

During the surgery, Ethan's nerve to his left vocal cord became strained. We don't believe that this is permanent. His voice is softer and a couple octaves higher.

We thank everyone for their love and support. It means the world to us. I am so grateful that this is over. It wasn't easy for Shane and me to see Ethan go through this, but I know it was the only choice and now we will not have to worry about him getting MTC.

Ethan's surgery

Ethan is done with surgery and is in recovery. Surgery went as well as it could. They found a lot of lymph nodes that they sent to be tested, but don't suspect that they'll be anything. One of his nerves leading to his voice box was stretched and that it their only potential concern that he could end up with a hoarse voice at the end of the day. Thank you for all of your thoughts and wishes.

I just wanted to give a quick update. We have scheduled Ethan's surgery for May 4. The endocrinologist feels Dani should wait a yr and have her grow w/ her own thyroid hormone. The kids had bloodwork yesterday which included a calcitonin level. This is the blood test for the cancer Shane has. If Dani shows an elevation that is worrisome then they will do the surgery sooner.

Knowing that we have the date makes it all the more real for me. I am feeling very anxious about telling Ethan about the surgery, the surgery itself and the hospital stay. But I know that he is in good hands. Just one day at a time I guess. I will write more after his surgery.

Quick update

We finally heard from Shane's oncologist. She reviewed his scans and feels that he should wait before starting any meds. This means that his cancer is not growing at a 20% rate. Finally, a piece of good news!! Next week we have the kids' endocrinologist appointment. I am hoping we will get Ethan and Dani's surgery dates. For now I am going to enjoy this sunny day!

The Newest Update

On Wednesday, we took the children over to CHOP to have their ultrasounds. I was fully prepared to have both Ethan and Dani put under sedation. To my surprise, both kids did amazing without having to be sedated. I am proud of them. More importantly, Ethan and Dani's scans both came up clean. It is a huge relief for us.

Today, we went to see Dr. Kazahia at CHOP. He is the ENT that will be doing the surgery. He was great, and answered my many, many questions. It looks like we are scheduling Ethan's surgery for the beginning of May. Fortunately, Dani does not have to wait, and she will have hers done in June.

It seems that the surgery, barring any complications will last about 3-4 hours. The hospital stay will probably be about 3 days. The doctor says that their recovery will be about a week and we just have to make sure the surgery site doesn't get wet for a few days afterwards.

In regards to their thyroid levels and calcium levels (which can be affected during surgery) they will be closely monitored by an endocrinologist.

We have rounded up a wonderful team and I couldn't have done this without the help of my sister in law, Julie. She is a CHOP doctor and has been guiding me the entire way.

In regards to Shane, we have not heard from his oncologist yet. I have put in a couple calls in to her this week, but have yet to hear back from her. Hopefully we will know something on Monday.

It has been a long couple of days. The kids have been real troopers! We have been dragging them from one doctors appointment to another and they haven't protested too much. I guess the next couple of weeks will be quiet, which is something we all need. I will then have time to gather my strength and rejuvenate before Ethan's surgery in May.

Once we know about Shane, I will blog again. until then......