AFIP officially confirmed the pathology analysis today. We had not expected otherwise, but we were disappointed by the report nonetheless.

We also informed the doctors today of our decision to proceed with the surgery. The tentative date has been set for April 12. After that, Thomas will need a few weeks of recovery, and then he will undergo chemotherapy for at least six months. We have a long and difficult road ahead.

On the heels of our decision, there was a bit of positive news today. Dr. Kazim believes he can save Thomas's eyelids, which means he would be capable of having a prosthetic eye! There are pros and cons, but in our opinion the positive far outweighs the negative. The greatest risk is that the eyelids do contain tumor cells. If postoperative pathology shows this to be the case, a second surgery will be necessary to remove them, but if they are clean of tumor, they can remain. Further surgeries would be necessary to implant the prosthetic eye and make other adjustments, but this would free Thomas from the burden of having his eye to appear wholly missing and having to keep it covered for the rest of his life. Dr. Kazim wanted to be honest and told us that it would not be possible for the eyelids to blink and function in a normal manner, nor would the prosthetic eye move, but we still believe this is far better than the alternative!

We informed Thomas today. It was an emotional event, but to our complete bewilderment, Thomas was the strong one. He initially broke into tears, but only for twenty or thirty seconds. Then, something seemed to take hold of him and it was as if we were talking to a thirty-year-old. We simply cannot believe his reaction given his age and his inexperience in life with difficult and emotional situations. Thomas is our child, and yet do we really know him?

He reacted with patience, thoughtfulness, wisdom, and a positive attitude. It was we who were crying like idiots, while Thomas tried to console us. We wanted to be strong for him, but it proved beyond us, and yet Thomas found the strength. We came away from this experience utterly stunned. Let us share a few of the things that Thomas said.

We have told him repeatedly that we would give anything if it were one of us who had this horrible disease and not him. Today, after we told him what he was going to have to endure, he told us, "Mommy and Daddy I'm glad it's me and not you, because I don't think it's so bad and I can handle it, and I wouldn't want you to have it because that would make me sad."

Before we even made the feeblest attempt to help him have a positive attitude about this, he told us, "I'm not going to let this bother me, I'm just going to be the same happy Thomas and live my life and have fun and not be sad because having only one eye or wearing a patch isn't so bad."

At one point during the conversation, he observed, "You guys are sad and crying, but look, I'm okay. I'm not scared, see, my heart's not even beating fast."

And finally, when we had to tell Taylor after Taylor arrived home from school, Thomas asked, "Daddy, do you want me to tell him so you won't start crying?"

Initially we thought perhaps that he was putting up a psychological defensive wall, and though we will still watch for this, we've decided he has not. He truly understands all we told him, and we did tell him everything, even that having this surgery is not a guarantee that his cancer will not return, and for reasons that we can only attribute to God and Thomas's unbelievable spirit, we now know that we will get through this as a family. And, it appears that our greatest strength and stability is going to come from the one who suffers most, Thomas himself.

Today was a difficult day. Ritina and I were apart because of a commitment to a client. We had little time to talk until late, but we both did a great deal of thinking. In fact, I thought of little else all day. We did pose more questions back to Thomas's doctors, looking for at least a bit more information, but I think we both know at this point that we truly have all the information we're going to get, and enough experts have weighed in that there is little point in further opinions. How can we make this decision? Ritina and I are presently divided in our opinions, but we have agreed on one thing: tomorrow we must tell Thomas. He deserves to know, and we think he deserves to know before we have committed to this decision on his behalf.

How can we tell him this? We don't know. It seems that at every step, no matter how difficult things were, they get harder at every step.

A two-hour meeting today with Dr.'s Kazim and Granowetter was thorough but devastating. Although AFIP has not confirmed the pathology yet, they are proceeding on their belief that the analysis is correct. We received not only their opinions but also the opinions of at least a half-dozen other sarcoma specialists at cancer institutes around the country and Canada, including the Mayo Clinic, Boston Children's Hospital, the Dana Farber Institute, and others. Their combined is opinion is virtually unanimous: due to the tenacity of this cancer and its very low survival rate (twenty to thirty percent), they recommend the complete removal of Thomas's eye and eye socket contents, followed by six months of chemotherapy.

Worse, Thomas would not be able to have a prosthetic eye because there would be no muscle or tissue or eyelids or anything at all remaining that could support one. If we choose this for him, he will be faced with wearing a patch or other eye covering for the rest of his life. The surgery itself will be tough on him, too, because tissue and skin must be grafted from other parts of the body to fill in and cover the eye orbit, and the recovery will difficult.

The worst part is, even if we take this horrible action, we can not be assured the cancer will not return. We know only that this gives Thomas the best chance to be in the twenty to thirty percent that survive this monstrous cancer.

We are faced with a most horrific decision in the face of great uncertainty. There is insufficient information, all the options are bad, and yet we must choose. How this will come to pass we do not know.

It turns out that it was an unfortunate but understandable communication mistake between departments at Columbia Presbyterian that resulted in AFIP not receiving Thomas's tissue samples. It has been corrected, and Dr.'s Granowetter and Kazim hope to hear something by Monday. Ritina and I are scheduled for a discussion with them on Monday afternoon.

In the meantime, Thomas's eye has healed for now and all but one stitch has dissolved. Unfortunately, Dr.'s Kazim and Granowetter have both mentioned the high likelihood of additional surgery on that eye orbit.

We have finally shared with Thomas what chemotherapy is and what some of the side effects are. We have a great book from the pediatric cancer center at Columbia that explains things simply and clearly. Thomas handled this fairly well, but is clear he has concerns. Please keep him and us in your prayers.

After a week-and-a-half of wondering and waiting, we learned today why we haven't heard back from AFIP. The tissue samples were never sent. Both Dr. Granowetter (our Pediatric Oncologist) and Dr. Kazim (our Ophthalmic Surgeon) called today asking for information and trying to piece together what happened. They both also promised that the samples would be FedEx'd tomorrow, absolutely.

Still no word on the second pathology report. Sigh.

On a positive note, Thomas is becoming a rather amazing chess player. I taught him to play two weeks ago while he was in the hospital recovering from his surgery. The last couple of times we've played, he's started to give me some serious competition. He learns a bit from every game, and he's spent hours playing against a computer version on my handheld. At this rate, it won't be long before he can beat me!

Tomorrow is the day that Thomas was scheduled to return to school following his surgery. At bedtime tonight, Thomas wondered why, if his eye was healing from surgery and he was feeling better, why he wouldn't be going back to school for a while. For the first time I shared with him a bit about chemotherapy. I didn't go into details, but simply shared that because of the medicine he was going to take he might not feel like going to school, and that we were going to have to be extra careful to keep him from getting sick because the medicine made it harder for his body to handle illnesses while he was taking it.

Honestly, I'm still praying for a miracle here. The thought of having to watch Thomas suffer through chemo tears at me more than anything. If it does come to that, though, and it seems it will, I have committed to being strong for him and being there every step of the way.

A lot of people ask how Thomas is doing. We don't usually know if they're asking about how he's recovering from his surgery or how he's dealing with knowing he has cancer. His recovery from the surgery has been progressing amazingly well the past few days. The swelling is almost completely gone now and the discoloration is only a fraction of what it was only one or two days ago. He's able to open and use his eye somewhat normally now for the first time in almost two weeks!

As for dealing with knowing about his cancer, he's scared, but in between all the tests he's being subjected to, for now he's just being a kid. Most of the time all seems fairly normal with him, but we know it's on his mind because once in a while he asks questions or makes statements that tear at our hearts: "Am I going to die?", "Will I lose my eye?", "Seven is too young to die.", "Is cancer the worst thing there is?" and others that I can't even bring myself to write. We've been honest with him about everything we know, but we haven't explained fully yet about how chemotherapy is going to affect him. We ourselves don't know the details of his treatment yet, so we don't feel we should burden him with it prematurely.

Thomas was scheduled for a central line and bone marrow test today, but as the second pathology report is not available yet, Dr. Granowetter has indicated that this can wait. She doesn't feel that waiting a week or so will change the final outcome, and she would rather have all the information before proceeding. She has rescheduled the central line and bone marrow test for next Thursday under the assumption that the pathology report will be complete.

Thomas had a bone scan today and there is no evidence of cancerous cells in the bones! We spent about an hour today talking with another wonderful doctor at Columbia Presbyterian, Linda Granowetter, a sarcoma specialist who will be managing Thomas's case. We learned that chemotherapy is probably an inevitability. Even though the tumor was surgically removed and there are no signs of further tumors, cancer cells probably remain in the body. The difficult part is determining exactly how to treat this. This cancer is rare, virtually unheard of in the eye socket and never in a child, and so there is very little case history on which to base treatment. Dr. Granowetter will be researching possible treatments while we wait on a second pathology analysis of the tumor by the Armed Forces Institute of Pathology (AFIP), apparently the authority for pathology in the United States. Thomas is scheduled for a central line and a bone marrow test on Thursday.

Today was the most difficult day of our lives. We are not strangers to the challenges of life, but nothing prepared us for this. We had formerly consoled Thomas about the tumor in his eye by sharing with him what we had been told by his doctors. Based on the CT and MRI scans, the tumor appeared to be something benign, probably an hemangioma. Thomas knew about cancer and had been scared this was what he had. We had directly told him he did not. Today, we had to tell him we had been wrong. We had to tell our child that he had the one thing he feared the most.

We didn't think we would get the results of the CT scan until Monday, but a wonderful doctor, Michael A. Weiner, the head of Pediatric Oncology at Columbia Presbyterian, made a special effort to obtain the results late in the day and personally call us at home. There appear to be no more tumors in Thomas's body! We are thanking God for this and praying about Monday's bone scan.

Today we were informed that the tumor that was removed from Thomas's eye is a rare form of cancer known as mesenchymal chondrosarcoma. This news was devastating. Tomorrow Thomas is scheduled for a CT scan of the rest of his body.