When it all started.

February 13th, 2005 - 10:18pm by Mom

Our world has changed dramatically overnight. It all started Wed morning, Feb. 9. when Kevin called me at work to tell me that he had this bad pain in his chest.

This was about 7;30am. I told him to go back to bed and I would call Apollo HS to let them know he wouldn't be in school that day. I called the clinic to see when I could get him in for an x-ray, thinking he most likely had pneumonia. We got an apt for 3:45pm. After the doctor looked at the chest x-ray, he was concerned and send us for a CT Scan. After we did that, we waited for the doctor to see the results. He talked to Kevin and I after he saw the results and told us there was a tumor in his chest that may be cancer.

We had to decide right away if we wanted to go to U of M, Mayo, or Mpls Children's hosp. I choose Mpls Children's hosp because I have worked with them a lot through my clients, so I knew they had very good oncologists.

After Kevin and I left the clinic, we went to SpeeDee to talk to Dick. We all had a good cry and felt more ready to tackle this thing head on! Thurs morning the 3 of us headed to Mpls Children's hosp. Kevin had multiple tests on Thurs and surgery on Fri. The preliminary biopsy results confirmed that the tumor was cancer--most likely a form of lymphoma. The final biopsy results will tell us exactly what type of cancer and that will determine the course of chemo and radiation.

Kevin will have a port-a-cath inserted into his Lt chest right under the skin for chemo administration. We will also take him to Cryo-Genics in Roseville to bank sperm before chemo starts because there is a 50% chance that he may be sterile after the chemo. If that happens he will still have an opportunity to have biological children in the future. He would be tested every year, and if the sperm count is high enough, we would stop banking.

Kevin's tumor is in the mediastium--area between the lungs and right over the heart. It was already wound around the trachea (wind-pipe) and the great vessels of the heart. It is in the large cluster of lymph nodes that are concentrated in that area. For all of these reasons, they could not remove the mass; these lymph nodes are needed for the body to fight off infections. So all they did was go in between the first and second ribs and take a piece of the tumor for a biopsy. So Kevin had a 4 inch incision. The chemo will be hopefully shrinking and then killing the cancer cells.

Lymphoma has a good success rate, and Hodgkin's lymphoma has the best cure rate--100% if caught early. So we are hoping this is Hodgkin's. All of the test done so far seem to indicate that it hasn't spread, or at least not very much. They will be doing staging tests after we know the final biopsy results.

Kevin is in good spirits and thinking very positive--as we all are.

Dick and I were scheduled to fly out to Costa Rica today (Sat). The whole trip was already paid for (an all inclusive package with food and drinks, etc.) We called the travel agency on Thurs morning from the hosp to see if we could get a voucher to be able to go sometime in the future. We were told that because we didn't notify them 3 days before departure, there was not refund or credit--in other words, we lost everything.

I happened to make a comment to a nurse here about the planned trip and that now we at least both Dick and I had a week vacation to be here with Kevin, since we were supposed to be in Costa Rica. Before we knew it, the oncologist, hospital social worker and a bunch of other people were calling the travel agency, Northwest Airlines, and resort in Costa Rica to get vouchers for us. It looks like Northwest will do that, not sure yet about he resort, but the SW said she wouldn't give up until they did something.

The hosp. here had been just fantastic! We couldn't ask for better care for Kevin, and everyone is so upbeat. They are spoiling Kevin rotten; he may decide not to come home! Dick and I are staying at the Ronald McDonald house at night. They have been wonderful also.

I'll keep you posted on further developments after we get the results of the final biopsy.