May 16, 2001 - Transplant Day plus Three hundred and forty-one
Sacramento, California
| There is certainly a part of us that wishes
that we had not noticed that Nathaniel's left eye had started to mildly wander last week.
For if we hadn't, we wouldn't be here now, revisiting worries that we had hoped
were buried and gone. Since the type of leukemia that Nate had is an
aggressive sort, our physicians thought it best to do some testing with respect to Nate's
vision. The results of all tests came back mostly normal, except for the
cytogenetics test. This test looks very specifically at the cells of the bone
marrow, and of the twenty that were examined, one contained the genes that lead to
cancer. This test is too specific and the results too small to be able to clearly
diagnose relapse. And the possibility exists that there may be a stray cancer cell
or two that just has yet to die as a result of last year's chemo and transplant.
Yet, for the moment, it remains difficult to hold our son without fearing for him.
But we're working on it. The plan for now, as always, involves more waiting. Our one year anniversary post transplant is a mere 24 days away, and most of the specific tests that Nate will need to undergo will await our return trip to North Carolina. He will have an MRI of his brain next week, however, and we'll have to test his blood relatively frequently at this point. We will update this site as soon as we receive more news. Pending the results of our one year check-up at Duke, we'll either be sent home with a celebration or be retained for treatment. And we'll cross either of those bridges when we come to it. We'll also be doing a lot of praying, and we'd appreciate your help in this regard. Most importantly, we've got two wonderful and developing boys. Nate's verbal capacity is growing every day as is his full emancipation to the terrible two's. He and Ryan look forward to greet each other each morning, Nate with a smile and a hello and Ryan with a smile and some spit-up. Ryan is crawling and giggling and doing all that a nine month old is supposed to do. Nate's restrictions with respect to his immune system have been slowly loosened, and we've enjoyed tremendous freedom at the zoo, the park and at his new cousin's house (see picture). He's become perceptive, light hearted and coy. And he's taken to tackling his nine month old brother on the tile floor whenever possible. All signs of good things to come. Keep the faith. |
|
May 31, 2001 - Transplant Day plus Three hundred and fifty six
Sacramento, California
| As promised, we return with a quick update of
the past two weeks... Because the type of leukemia that Nate had was one that easily
crosses the blood/brain barrier and because of the possible indication of relapse from the
genetic tests of two weeks ago, Nate underwent an MRI of his brain last week.
Although no one believed that the MRI would be positive, we were ecstatic when no tumors
were found. We then trotted Nathaniel off to the opthomalogist to further
investigate his slightly-wandering left eye. After seeing two eye specialists, the
conclusion was reached that he had scarring on the retina of both eyes. The scarring
is likely due to the CMV infection that he has been fighting for the past year and the
damage is, unfortunately, permanent. Hence, Nate's vision will likely always be
blurred to some extent. However barring further infection and immunosupression, it
should not get any worse. One year less nine days ago, when Nathaniel underwent his umbilical cord blood transplant, the staff at Duke looked to the one year tests as the important but distant milestone. We were told that should Nate receive a clean bill of health after one year, the doctors would feel very confident about his potential to survive his struggle with leukemia. And so we prepare with complete optimism and faith for the next battery of tests in two weeks. We have mentally ascribed this past month's frightening test results as an anomaly and we celebrate each day with two healthy boys. We remind ourselves that Nate, after all, doesn't know that he's been ill. He is unfamiliar with fear and with worry. In his perspective, he's a happy regular kid. He thinks the eye patches that he has to wear are part of a fun game, and he enjoys playing the pirate to his brother's Peter Pan. He doesn't know that his vision is poor, doesn't know that most kids don't have a tube stuck out of their chest and doesn't know that an important verdict of his health will be cast two weeks from now. Each day, he just looks to be happy and to spend time with his family. And his happiness is all that matters right now, we tell ourselves, and therefore his life is complete, as is ours. We'll talk in three weeks. |
|
