Its been a long time since my last update.

Our last dr's appt was in June. At that time the dr told us to enjoy our summer, we took her advice and had a great summer!
As summer came to an end, I knew that soon we would be going through the cycle of scans, waiting, and then the oncologist visit. As much as we are staying positive, the what ifs were beginning to creep in.
Friday of last week and this Tuesday, Shane had his scans. Ofcourse, the waiting is always a little tense!
Today, after waiting 3 hrs we met with the oncologist. She didn't actually look at the scans, but read the report from the radiologist and there is minimal to no growth. This is such wonderful news. Better than we imagined! So now we wait another 3 months and go through the cycle again.
Meanwhile, Shane is feeling great and more positive than ever.
As for the kids, they are great. Ethan's voice is completely back to normal and he totally adjusted to life without his thyroid.
Dani will have an ultrasound this winter along with bloodwork to make sure that there is no indication of cancer in her. We don't expect there to be, I just want to be extra cautious. Her surgery is still slated for the spring.
Thank you again to our family and friends for your never ending love and support!!

After waiting over 2 weeks and enduring 2 scans, we found out tonight that Shane does not qualify for the drug trial.

This is a very good thing!! It is just a shame that we had to waste our time, energy and emotions over this situation which could have been handled much more professionally. It seems not only did Penn drop the ball, but the drug company who is conducting the study, was dragging their feet getting back to us with an answer. Now, we can enjoy our summer with our children and in September we will go back to the doctor and revisit the drug trial option once again. Thank you all for the love and support we really appreciate it!!

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......

Family Photos

Where to begin... Shane is feeling good and has been back to work full time now. We are really trying to resume our "normal" life

Last week he had ct scans done. The results show that there is more growth in his medium stienam, but within normal range. There is also a new spot on the right side of his chest. So yesterday, we went to see his oncologist at Penn. Unfortunately, they had us down for next Thursday, but they were able to squeeze us in. After waiting about 3 hours, the doctor came and gave Shane a quick exam. Unfortunately, she did not have his scans prepared, because she thought we were coming next week. So needless to say, we still don't have any answers. But, hopefully we will by next week.

The doctor did tell us that the clinical trial she is opening will start within the next month. Shane will be a candidate for it only if he has a 20% growth from his initial scans. If his growth is not at 20% then we wait another 3 months and have repeat scans.

As for the kids, we have 2 appointments next week. On Wednesday, they will both get ultrasounds of their thyroids. We may end up having to sedate them, as I am sure they will not lay still for a stranger to rub a cold instrument on their necks. It should be very interesting. We also have an appointment with an ENT at CHOP on Friday. All the doctors that we have been dealing with all agree that he is the best ENT for the job. This makes us feel much better.

After 5 months, I still can't believe that this is happening, not only to Shane but our children as well. Fortunately, the kids seem no worse for the ware and Shane is unbelievable. He has such a wonderful attitude, and is facing this head on. His spirits are great and physically he says he has never felt better. He is my hero!!!

As we get more information, I will blog more. Thank you again, all our family and friends, for your wonderful support. We are a very lucky family.

As you all know, Shane has a rare form of thyroid cancer called Medullary Thyroid Carcinoma. This cancer can either be sporadic or familial. His happens to be familial.

Ethan and Dan were tested two weeks ago. The results showed that they are positive for the ret-onco gene mutation. Their specific mutation is called Men-2 A. So along with the Medullary carcinoma, they are at risk for other adrenal type cancers.

Fortunately, there is something that we can do. To prevent the children from getting the MTC, they will need to have their thyroids removed. Ethan will have his taken out soon, and Dani may be able to wait until she is 5.

We are working with a team from Penn and we will find out more information from our appointment at the end of March.

Ethan and Dani do not know what is happening yet. We will tell them when we feel it is necessary.

We appreciate the love and support from our family and friends. Thank you from the bottom of our hearts.