On Wednesday of this past week Dr. Kazim met with Thomas to examine the healing progress of his surgery. He seemed pleasantly surprised at how well the healing is progressing. He removed all the bandaging and gave Thomas a black patch. He told Thomas that he could wear the patch if he wanted, or he didn't have to wear anything over it at all. Here at the house Thomas has been keeping it uncovered, but in public he is choosing to wear the patch whenever he can't wear his sunglasses (more on that in a moment). The eye looks amazing, it simply looks like a closed eye (with some stitches in it), and Thomas doesn't seem hindered by the eye's absence in the least.

Thomas also had an echocardiogram on Wednesday. The purpose of this was to have a baseline for comparison when he starts chemotherapy. This test is performed with ultrasound, but Thomas was a bit apprehensive at first. A great doctor named Karen Altman did an amazing job explaining everything to Thomas as they went and in keeping him calm. It was pretty cool seeing all the valves of the heart, the major arteries, blood flowing everywhere, and when Thomas understood what he was seeing, he barraged the very patient doctor with an endless stream of questions. When it was all over with, Thomas actually seemed to have enjoyed it.

Now that Thomas has only one eye, it is necessary for us to protect the other eye as much as possible. The biggest part of this involves having him wear glasses with polycarbonate lenses. He has perfect vision in his left eye so there's no prescription, but the polycarbonate lenses can withstand the direct impact of a hammer and still not break. There is a wonderful doctor here in Brookfield, Dr. Jeffrey Migdol, who's office is helping us with obtaining the glasses, and who is donating a pair of outdoor and a pair of indoor glasses to Thomas. At the moment he has a pair of sunglasses that he's using temporarily. They look very cool and fit well, but there are some other glasses he would prefer to have and they have not arrived yet. He has chosen a couple of frames for indoor glasses as well, and we are going back to their office on Monday to finalize the choice so they can get the glasses made for him.

Thomas himself is doing wonderfully. At this point he has only a small bit of pain from the incision on his head. This is not surprising; Dr. Kazim said the pain from this would be something akin to getting hit in the head with a brick! We're pleased it is doing as well as it is. He also has a small bit of discomfort from the central line, but it seems to be improving as well. All in all, Thomas is pretty much back to being himself at this point. Chemo is at least a couple of weeks away, so we're making every effort to have some good times with Thomas now while he's feeling like it.

Last night we were treated to a New York Mets game by New York Children's Hospital. About a dozen families were escorted by the NYPD on buses from the hospital over to the game. They fed us dinner at the stadium as well, and both Thomas and Taylor had a great time. It was a wonderful night to be out, it was a good game, and the Mets beat the Brewers 1-0.

Thomas gets to keep his eyelids! Ritina and I were both gone from the house, but Dr. Kazim called shortly after 6 PM last night to give us the news that pathology had determined there were no cancer cells near the eyelids. This is wonderful news, because it means Thomas can have a prosthetic eye. I was at a client's site late last night, but Thomas himself told me over my cell phone. We are all overjoyed! We can't thank Dr. Kazim enough for suggesting this approach and making it successful!

Thomas is home! He's tired---he slept most of the trip home---but feeling pretty good. He has some pain, some side effects from the various medications he's taking, and eating is difficult because his jaw is very tight. These seem to be relatively minor issues to him, however, and he's just back to being himself; the missing eye isn't bothering him at all. When we left the hospital he said, "Wow, it's a nice day for playing outside." We felt it to be a bit too soon for that, so he and Taylor, who's on Spring Break, have headed off to play in their rooms.

Chemotherapy will start in a couple of weeks, but not before we have the final pathology report on the resection. We are praying that there are no tumor cells anywhere on the margins (the outer edges of the tissues that were removed). This makes a huge difference in the prognosis and how we proceed. While we wait, we will be caring for the surgical sites, and visiting Dr. Kazim next week so he can examine Thomas. Until then we will be keeping the right eye bandaged (I know there's no eye now, but it's still easiest to refer to the area as his right eye, and we are hopeful that in a couple of months there will be a prosthetic eye there), changing the dressing once a day. After that, Dr. Kazim is considering possible short-term solutions until the prosthetic can be fitted.

Our greatest prayers at this time are that there are no tumor cells either in or near the bones of the eye socket, or in or near the eyelids. We won't know the answer to these for a couple of weeks, but the results will have a dramatic impact on both Thomas's cancer and cosmetic treatments.

We thank you again so much for all the support we've received. It's just been overwhelming, and has really helped to get us through this. There is more to come, but we feel like we can make it now, and all the love that's been given to us by family, friends, and complete strangers is the reason. Words fail me to express our true appreciation, but we want you to know that it has made all the difference in the world.

I returned a short while ago from the hospital. Thomas is doing wonderfully and should be released tomorrow! The swelling has been minimal, and Thomas was up and about for over six hours today! He was disconnected from his IV most of the day. We did a lot of walking, some playing in the child life center (Hi Melissa!), and played a few games of chess (he can't beat me yet, but for the first time he played me to a draw last night). Thomas was tired and a bit scared and so had some difficulty with an echocardiagram this afternoon, but his spirit is just as unbelievable as ever. We shared a room with a young girl, probably about three-years-old, who was undergoing her first round of chemotherapy; he expressed more concern for her than he did for himself!

I hope no one will find this morbid, but it's such an example of Thomas's spirit that I simply have to share it. While we walked around today we talked about all sorts of things. At one point, Thomas came up with a joke about his eye. It went like this: Q. Do you know which eye I still have? A. The one that's left. (His right eye is the one that was removed, get it?) That he can joke about this while he's still experiencing the pain of recovery is nothing short of amazing to me. As his father I've taught him a lot, but through this trial he's taught me a lot more!

I can't wait to go pick him up tomorrow!

It's about 2 PM as I write this. I will be heading down to Manhattan shortly to relieve Ritina for tonight. I just spoke with her on the phone. Thomas was up out of bed finally for the first time right as I called. Last night he complained a great deal about the compression bandage wrapping his head, and Dr. Kazim removed it this morning and replaced it with two smaller dressings directly over the incisions. Ritina was able to observe the site of the surgery and she said it looks very good. With the bandage off, though, it is going to swell, so the next few days might be tough for Thomas, especially if his left eye swells closed for a while. Thank you again for all the prayers, cards, messages, and love that you have directed toward our family. You can't possibly imagine the incredible source of strength it has been.

Ritina and I both accompanied Thomas to the operating room right at 8 AM yesterday morning. Thomas had some anxious moments because he doesn't like nitrous and he experienced more pain than he expected from the IV, but in the end he calmed down and went to sleep peacefully. After leaving the operating room, Ritina and I just held each other and cried for a long time. Due to space restrictions and a full schedule of surgeries that morning, we were not allowed any additional friends or family, so Ritina and I faced this one with just each other. God gave us strength when we needed it, though, and we're doing okay.

The surgical procedures themselves took about nine hours, roughly twice as long as estimated, but there were no complications. Thomas's right eye and the entire contents of the right eye socket, including a layer of the bone, were completely removed. One of the muscles near the right temple was then cut and folded into the socket to restore its volume. Following this, some additional fatty tissue from Thomas's, uh, "posterior", was grafted on top of the muscle to provide additional volume and shape, and to provide a surface where a prosthetic eye will hopefully be able to be mounted. In addition to these primary procedures, Thomas also had a bone marrow aspiration taken from his hip, and a central line implanted in his chest. The procedures were performed without complications, and Thomas remained stable throughout the entire day of surgery.

I spent the first night with Thomas last night. He was not uncomfortable because he is receiving a continuous dose of pain medication, and also has a device that he can use to administer additional medication to himself if he needs it. He was in and out of sleep most of the night, waking up every forty-five minutes to an hour needing me to hand him the button that would give him more medicine (we're not supposed to push it for him, and both of his hands were still taped with IV lines from surgery).

Throughout the day today Thomas was mostly awake. His jaw is tight because of the stretching of the muscle that was folded into the eye, but he seems to be able to move his mouth reasonably well. He whispers, mostly because his throat is still sore and dry from the respiration tube from surgery, but he talked quite a bit. He's is subdued because of the pain medication, there have already been some tough things to deal with in recovery and more are coming, but he still seems to have a very positive attitude. He even managed a couple of smiles today. I was amazed he would feel like seeing people yet, but he even asked for visitors!

Tonight Ritina will stay with him. Her night might be a bit tougher because she faces the task of having to get him out of bed for the first time. When I left them at about five this evening he was doing reasonably well, but he was still staying very medicated. I will return tomorrow and relieve Ritina. We plan to trade off in this manner until he can come home. We're hopeful that he'll be home Monday, but realistically we believe it will be Tuesday or Wednesday.

On a personal note, I was granted a small bit of comic relief today. Thomas finally felt like eating something for the first time about 1 PM today. He and I decided on some bread since he'd able able to chew it and it would digest well. Unfortunately, the hospital cafeteria is closed on the weekends and lunch had come and gone. From my vantage point on the tenth floor of the hospital I could see a market about four blocks away, but I didn't want to be gone for a half-hour just to retrieve a piece of bread. I then remembered that there was usually a hot dog vendor right out in front of the hospital. He was indeed there, but I discovered that his English wasn't so good. In most cases I don't think this would be a problem, one could just point to the desired toppings and that would be the end of it. In this case, however, I found myself in a very humorous situation trying to explain nonverbally that all I wanted was a hot dog bun, not the hot dog. It became amusing enough to me that I came close to laughing. In fact I did laugh when he finally got it because the look on his face was priceless. He's probably not the first hot dog vendor on the streets of New York to be asked for just a hot dog bun, but he certainly thought so. He still charged me a dollar, though.

Thomas's surgery is tomorrow at 8 AM.

His eye, all the tissues in the eye orbit, and a layer of bone along the wall of the eye socket will all be removed. The plan is to reconstruct the orbit using muscle tissue already in the area, thus avoiding the more difficult process of having to graft in tissue from another part of the body. There is some concern as to whether there is sufficient muscle tissue for this in the area, and the plastic surgeon has indicated that a determination is only truly possible once the procedure is underway. Thomas will also keep his eyelids for now, and if the postoperative pathology can confirm that there are no cancer cells near them, he will keep them forever, making a prosthetic eye possible. Should the eyelids need to be subsequently removed, something we are praying is not necessary, a second surgery will be necessary in about two weeks to remove them.

The day we have been dreading has finally arrived, but we now believe we have the strength to get through this. We know more trials await us on the other side, but we are taking one day at a time and trusting in God. Thomas is still in great spirits. His strength is a good part of our inspiration.

We are not certain when the next update here will be, but it should be sometime over the weekend.

We spent an exhausting but productive day in Manhattan yesterday (and it was a beautiful day for a walk through central park). We visited Dr. Kazim, our ophthalmic surgeon, Dr. Granowetter, our oncologist, and met for the first time with Dr. Jeffrey Ascherman, the pediatric plastic surgeon who will be involved in the reconstruction of Thomas's eye socket. We also met Genevieve Lowry, a child life specialist at Columbia Presbyterian, who will be helping us to help Thomas deal with everything he's facing.

We learned two things yesterday that are probably worth mentioning. First, Dr. Ascherman seemed concerned that the muscles around Thomas's eye, the ones that Dr. Kazim would like to use to reconstruct the eye orbit, may not have sufficient volume. He will be speaking with Dr. Kazim about this today and hopefully getting back to us today or tomorrow. Second, we spent a good deal of time with Dr. Granowetter reviewing the details of the chemotherapy. There was nothing we really did not know, but it started to make the reality of it really settle in. The treatments will be at Columbia Presbyterian every three weeks. There are two alternating courses of treatment. The first course will require Thomas to be in the hospital one or two nights. The second course will require him to be there for at least five nights. So, as we begin the treatment, Thomas will probably stay one or two nights, then three weeks later he'll stay five nights, then three weeks later one or two nights, and so on until the course of treatment is complete.

Dr. Ascherman's office was across town from the main Columbia Presbyterian site. We took a taxi on the way over because we had an appointment to keep, but on the way back we took our time. We walked across central park, had dinner at a Pizzeria Unos, stopped at the Gap and let Thomas buy some hats, and finally caught a taxi to take us the last couple miles back up Broadway. It was a wonderful way to relax and spend some time with Thomas at the tail end of a very full day.

Dr. Granowetter has indicated agreement with Dr. Kazim's plan to try to save Thomas's eyelids. We have our first meeting with the pediatric plastic surgeon next Monday, April 8. The surgery date is still tentatively scheduled for next Friday. Please keep us in your prayers as this date approaches.