Forgive me if this entry rambles more than usual. When something difficult or emotional happens I usually wait a while to write about it, but this I did not want to forget.

First, you should know that Thomas had a very rough day. He was scheduled for blood work today and it did not go well. His veins were not cooperating, and according to my wife it took two visits, a lot of poking, and even more crying before the blood was finally drawn.

About forty-eight hours after each of the last two chemo treatments, Thomas has ended up back in the hospital because of chills and uncontrollable shaking, extremely high fever, and vomiting. Last night we thought we'd made it this time. Tonight we found we were wrong.

Shortly before midnight Thomas came downstairs. It was immediately apparent that something was wrong, and both Ritina and I immediately knew what it was. I lay down on the couch with Thomas in my arms while Ritina set about getting cold cloths, Tylenol, calling his doctor, and making preparations to get him to the hospital. His fever was climbing rapidly and the chills and shakes were very violent. He was shaking so severely that he had muscle cramps in his legs. He was in so much pain, and there was really nothing I could do other than hold him.

As I lay there with him, between spasms and gaspy breaths, he managed to tell me that he'd been lying in his bed with fever and chills for a while, but because he couldn't get up or talk loud enough, he hadn't been able to get our attention. We'd checked on him about forty-five minutes earlier and he was fine, and we were about to check on him again. Somehow, though, he'd finally found the strength to get down from his top bunk and make his way downstairs to us.

As I held Thomas and tried to keep him cool by wiping him down with a cold cloth, his fever continued climb, he started vomiting, and his chills spread throughout his whole body. Every shiver and spasm caused Thomas to cry in pain. The muscles in his legs were rock hard. I tried to relieve him by massaging them, and for a while it seemed to make him feel better, but then he felt like it made it hurt more. He was simply in so much pain that there was really nothing that could be done.

On top of this, I unintentionally caused him more pain when I put EMLA cream (a topical anesthetic) on his arms again so that he could be accessed for an IV tonight. As I pressed the tegaderm (essentially a big piece of tape that holds the cream against the skin) onto his skin he cried in pain from the areas that were already sore from today's prior attempts to draw blood.

And now for the truly amazing part, the real reason for this entry ...

Thomas had already suffered miserably today, when his fever and chills started he suffered alone in his bed for a time because he lacked the strength to get our attention, he was suffering more now from the pain of every chill, he was sick from fever and vomiting, he was in further pain because his arms were already sore from repeated poking today, he knew he was in for more poking once he got to the hospital tonight, he was having trouble breathing because of the violent shaking and crying from the pain, and yet through all of this, as I lay there with him and he caught me wiping tears from my eyes, tears I was trying to keep him from seeing, this is what he said: "Daddy, fevers and chills and throwing up and IVs aren't fun, but it's okay because chemo's almost done and I know I get to live a long and happy life."

His incredible attitude continues to be my teacher, and I pray more earnestly than for anything I have ever prayed before, that he is right.

Thomas Wayne Pacheco, my beloved, beloved son, words can not express how proud I am to be your father.

Taylor and I went down to Columbia tonight to pick up Thomas and Ritina. We returned home about 11:30 PM. The treatment round went well, and for now Thomas is feeling fine. Our greatest concern at this point is that about 48 hours from now, following the pattern of the last two treatment rounds, Thomas will be headed back to the hospital with a high fever and severe sickness. His doctors never concluded what caused these symptoms following the previous two treatments. No infections were found in any cultures, and they seemed confident that the symptoms were not side effects of chemotherapy. In the end, however, they could offer no explanation and simply labeled the events as "unexplained fever". If you're reading this, we'd appreciate prayers that this pattern does not continue.

Only one more round to go! After that there will be one or two further reconstructive surgeries and the fitting of a prosthetic eye. With luck it will all be over by late winter or early spring. CT and MRI scans will continue quarterly, but all of us, and none more than Thomas, are looking forward to returning to a relatively normal life!

I remain in awe of Thomas's incredible attitude, his maturity beyond his years, and most of all his indomitable spirit.

Thomas and Ritina headed down to Columbia today for chemotherapy round eight. Both this round and the next, which will be the last, will be the longer treatment rounds. If all goes as planned, Thomas should be home this coming Sunday. Our greatest prayer right now is that Thomas does not suffer a repeat of the illness and high fevers which followed two days after both of the last chemo treatments.

After close to 72 hours the cultures have again shown no sign of any bacterial infections. Thomas has had no further fevers or illness while at the hospital, so he's being discharged this evening. Ritina's parents left the house about 5 PM to go down and pick them up. We will be following up with doctors, cultures, and additional blood work over the next week.

About 10 PM tonight, less than an hour after Ritina's parents arrived to visit for the week, Thomas began showing symptoms similar to those he experienced three weeks ago and that resulted in an unexpected return to the hospital. He initially had a mild fever, but this quickly progressed to chills, a rapidly increasing temperature, and vomiting. As with our previous experience this still concerned us, but we weren't as scared this time and we were better prepared. We took action immediately, getting Thomas's warm clothing off of him, giving him Tylenol, and working to keep his temperature down with cold cloths. Unlike the 105° temperature that he experienced last time, this time we never saw a reading higher than 103°, due mostly I believe to our better efforts to control the fever.

We again took Thomas to the ER of our local hospital. His blood was drawn both from his arm and from his port to obtain blood counts and start cultures, and his port was accessed in order to administer antibiotics. Our experience this evening in getting his blood drawn and in accessing his port was wonderful compared to this same experience a few weeks ago. Thomas was the most courageous I've ever seen him! Through all the pain I felt for him, I couldn't have been more proud.

Thomas's doctors at Columbia Presbyterian want him transferred down to them tonight, so Ritina and Thomas will again be travelling by ambulance to the city. When I left the hospital a short while ago Thomas was feeling better, though he still had a fever---it seemed to come and go---and was visibly tired. I'll go down tomorrow to take the rest of the things that Thomas and Ritina need for an extended hospital stay.

At present the theory is that Thomas has an infection in or around his port, and so it is likely that he is going to be at Columbia for a minimum of 48 to 72 hours while waiting for the results of all the cultures. We should know more about his blood counts and other tests sometime tomorrow.

Ritina took Thomas down to Columbia Presbyterian this past Tuesday for his seventh round of chemotherapy. They were expecting a "short" round, but when they arrived they learned that this was apparently supposed to be a "long" round. We are not sure where the ball was dropped regarding communicating this to us, but in the end it was decided to go ahead with the short treatment, but the next two rounds will be long treatments.

The treatment itself went well, although Thomas's blood counts were still a bit on the low side going into it. Our oncologist indicated this is probably a result of the infection that Thomas had between the previous treatment and this one. The counts were good enough that she recommened that we proceed with this treatment anyway, but she did want us to be aware that it is very possible that Thomas may end up at the hospital again before the next scheduled treatment.

Thomas and Ritina returned home about 7 PM yesterday (Wednesday), and so far Thomas is doing just fine.