THOMAS'S RESULTS

Thomas had his semi-annual checkup yesterday at Arkansas Children's Hospital. We had the results of the MRI and blood workup before we left, and all news was good news: no sign of anything out of the ordinary whatsoever. We expect additional results today from his CT scan, but we expect it will also be clear. We live in thanks for another six months cancer free, and our hopes are raised again that this is really, truly behind us forever.

One thing we did begin to address is some leg pain that Thomas has been having and that seems to be worsening---he almost refuses to run because of the pain, and at times even has difficult when just walking. Thomas's doctor as well as ourselves, after some research, believe the problem is related to his chemotherapy treatments. A side effect of one of the drugs that Thomas received, Vincristine, is a weakening of certain muscles in the lower legs, and apparently the pain and problem that Thomas is experiencing is a known issue. We will be starting Thomas on a prescribed regimen of physical therapy in order to help address it. His doctor seemed confident that the problem can be completely eliminated.

Thank you to everyone for your continued thoughts, prayers, and messages on behalf of Thomas and our family.

MEETING EBONY MILLER

Lawren Miller is an adorable two-year-old who was diagnosed with Mesenchymal Chondrosarcoma last October. We know of Lawren and her family through this web site and through an email group that we belong to. It turns out that Ebony, Lawren's mom, works only a few blocks from Arkansas Children's Hospital, and after Thomas's tests were done yesterday, Ebony came over to the hospital. It was the first time that we have ever met face to face with another parent of a child with Mesenchymal Chondrosarcoma, and it felt like there was an unspoken but very special bond between us. We all talked for about an hour, a sometimes funny and sometimes emotional meeting for all of us. Lawren is still in the midst of her treatments, so let's keep her and the entire Miller family in all our prayers.

Six months comes around fast! Since Thomas's last scans we've moved as a family from Connecticut to Arkansas near Ritina's family. This, of course, required transitioning to a new care facility: Arkansas Children's Hospital. We visited them for the first time today---it's a three hour drive, so we had to leave around 5 AM---and my initial reaction is: WHAT A WONDERFUL PLACE!

The best news of all, waiting for us in a voicemail when we arrived home tonight, is that all of his tests have been reviewed and he remains completely tumor free. To anyone out there who still reads this page and who keeps Thomas in your prayers, God bless you and thank you. All our prayers continue to be answered!

For the past few weeks Thomas has been experiencing headaches that seem to range from a dull ache to severe pain. When such things happen our thoughts can never avoid turning in the direction of a tumor recurrence, but yesterday's scans are all clear. The pain Thomas is experiencing with these headaches was severe enough tonight that Ritina ended up taking him to the ER where they gave him Dilaudid. We're working with his oncologist, pediatrician, and ophthalmic surgeon to try to identify the source of the pain. Please keep Thomas in your prayers.

Thomas and I went down to Columbia Presbyterian yesterday for his now semi-annual CT and MRI scans. We spoke with his oncologist today and all scans are clear, so we've relaxed a bit again here. Thanks for all the continued support and prayers!

Thomas's latest round of CT and MRI scans show that he remains tumor free. It was a rough day due to delays and rescheduling issues, but our only concern is for the thankful results! Thank all of you for your continued prayers and encouragement.

Thomas's scans did in fact end up taking place yesterday. His oncologist emailed us this morning to know that the CT, the MRI, and the heart echo all appear completely normal. Thanks for all the encouragement and prayers! The next scans will take place around the beginning of August.

We received a call from Columbia Presbyterian late last week. The day that Thomas was scheduled for his scan, the MRI machine will be down for maintenance. So, we are waiting on Pediatric Oncology to get back to us with a new date. Sigh.

Ritina and Thomas visited his ocularist in the city yesterday. Since his last reconstructive surgery on the eye socket, the prosthesis has not fit quite as well. We thought he might receive a new one entirely, but instead, volume was added to the existing one to position it better in the socket. It made a definite difference; the eye now appears more open and more natural. As Ritina noted, it can never look entirely perfect, especially given that it does not move, but compared to what we thought Thomas would be faced with when all this started, we believe this is a true blessing.

Thomas is a bit overdue for his next set of scans. Inclement weather--okay, a really big snow storm!--interrupted the planned day of testing a couple weeks ago. The tests have now been rescheduled for Tuesday, February 24. He is scheduled for a CT scan, an MRI, an echocardiogram, and finally a visit with his oncologist. We have no reason to expect anything other than a clean set of scans, but we ask that you keep Thomas and all of us in your prayers. Every time this rolls around it's an anxious time for all of us. We'll post again when we have the results.

I took Thomas down to Columbia Presbyterian yesterday. Dr. Kazim removed the dressing and both Thomas and I got a first look at the reconstruction work. It's still a bit swollen and there are stitches and incisions still visible, but when it's healed it's going to look much better. Thomas wasn't real excited at first by the way it looked, mostly because of the swelling and the way the site of the surgery still looks, but he did comment that he liked the way that the eyelids would open now and how you could actually see his prosthetic eye. He's feeling a bit self-conscious about the way it looks, though, so he may not be showing it off until it fully heals. Today he chose to wear his patch for the first time in a long time.

As far as recovery goes, he still has a very sore throat---sore throats are a typical side effect of surgery, but it's usually minor and clears up within a day or so---and we think it's possible he actually has strep. We knew he had a viral infection going into surgery, and now it appears that perhaps it and other things are wearing him down. Step has been going around the area, Dr. Kazim himself had it last week, and given the soreness of his throat and other symptoms, it's not an unreasonable possibility. He's already taking a strong antibiotic to prevent post-operative infections, so if he does have strep then it should clear up soon, but for most of the last two days he has not been feeling all that well. Keep him in your prayers that he'll be fully recovered soon.

Thomas, Ritina, and I headed out shortly after 6 AM this morning. Around 10 AM I accompanied Thomas to the OR; Ritina chose not to go into the OR this time. She felt that Thomas would show more courage if she were not there, and she knew that introducing the IV could be a rough experience and she just didn't feel like she could handle that today.

She was right. Of the four surgeries to date, today's attempt at getting an IV going was probably the most difficult. Even though today's surgery was the shortest and simplest procedure yet, Thomas was more nervous than he's ever been. Perhaps because he's older and more aware now. Perhaps because it's been a while since he's had to do the "hospital thing". Whatever the reason, he was nervous and scared, and this made for an IV procedure that was stressful and emotional, but, in the end, successful because he showed tremendous courage and allowed multiple attempts at the IV even though he was scared and in pain. Once the IV was finally in and Thomas knew it was done, he visibly relaxed and things went great from there. He calmed down quickly, and even smiled at me before indicating that he was ready to go to sleep.

Less than ninety minutes later we were with him in the recovery room. Dr. Kazim came out to speak with us right after he finished, and his opinion is that the reconstruction looks great. It's covered by a dressing that won't be removed until Thursday, so we can't judge for ourselves yet, but our trust in Dr. Kazim goes very deep at this point, and if he says it looks great, then we believe it must.

Recovery starts with a couple of days of inactivity; no school, no physical activity, nothing that might cause stress to the surgery site in any way. On Thursday I'll be taking Thomas back to see Dr. Kazim who will remove the dressing, examine the eye socket, and let us know where to go from there. We expect that other than having to skip physical activities at school for a while, the recovery process should be relatively easy for Thomas.

We'll post another update after we've seen Dr. Kazim on Thursday.

With much love to all our friends and family.