Thursday, April 23, 2009

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.

Thursday, April 16, 2009

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!

Saturday, April 11, 2009

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




Friday, April 3, 2009

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.