2001: June½
May½March ½ January
2000: October½September½August½July½June½May½April½February½January
1999: December½November½October
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August 10, 2000 - Transplant Day plus Sixty-two
Durham, North Carolina
| One thing we know for sure: regardless
of the extent of tumult typical of his past year, Nathaniel's life will surely and
drastically change once again, starting on Tuesday. And while he can't be sure of
the impact of next week, he seems to sense that something is up. Why else would he
be storing up food to feed his new sibling (see picture below)? In the meantime, he continues to be free of the serious side effects of the transplant, showing minimal signs of graph versus host disease. Nate's new bone marrow continues to churn out new cells, and he has not needed a transfusion in over two weeks. The only bad news is that his viral infection has made a bit of a comeback after we cut back on his medicine, so we are back to hospital visits three times per week for treatment. Otherwise, it's life as normal for a furry little immunosuppressed boy (a side effect of his medications is the growth of body and facial hair, making him resemble his Auntie's baby pictures). And the kid is all boy, electing to evaluate the effects on his parents to thrown toys, lines drawn in the sand and biting. We have been fortunate to have had continuous family support, although Nate must think that he lives in a Best Western, with people coming and going so often. He's now adjusting to life without his "Bapa," grandpa Parry, and with his "Lala," grandma Sundberg. Check out Nate's photo album for a recent picture with Grandpa. And in news that we have come to share all too frequently, there will be three new stars in the sky this week, as three of Nate's compatriots did not survive nearly long enough following transplant. The past couple weeks have seen Melanie, Chuck and Shaika leave us, and we ask you once again to include these beautiful children and their families in your prayers. Hopefully the new stars will be bright enough to lighten some of the darkness that now must exist in their parents' worlds. Thank you all for your continued thoughts and prayers: they are working well so far. Despite the odds and the evidence, we do not feel that there is another foot which is poised to drop, and we are excited about Nate's progress. And the arrival of his new playmate on Tuesday. Keep the faith. |
![]() There we were, sharing a serene and late night of television, when something blurred in front of the screen. We weren't sure what it was until we got the high speed film exposed.
Nathaniel, shown here in the opening scenes for the new southern epic, "Driving Mr. Bartlett." Nate tried a bunch of new things this past week, including seeing a lake and cruising on a boat. Mr. Bartlett is the ex-president of the physical therapy program |

Nate needs to eat 25-50% more than normal because of the nutritional needs following transplant. Here's how he is currently solving the problem of maintaining a permanent flow of food.
August 21, 2000 - Transplant Day plus Seventy-three
Durham, North Carolina
| In an environment such as this, the
impact of the miracle of birth is difficult to fathom. A new life, as it must always,
seems a surreal gift from above, yet the profound sense of loss and sadness from the
adjacent transplant ward is constantly palpable. So with a thousand thoughts running
through our minds, we welcomed Ryan Phillip into our family, on the morning of August
15th. Ryan arrived without incident, while his new brother Nate was watched by Ingrid's mother and sister (now since departed - see the photo album for pictures). As for Ryan's name, perhaps it was the Irish influence of the previous week's rented movie that inspired us. Perhaps it was the description of the child of Ingrid's obstetrician, also named Ryan, that moved us. Most likely though, it was just the last darn thing to enter our minds prior to delivery, and he just looked like a Ryan.... or maybe it was a raisin. In any case, cryin' Ryan it is, complete with a mild case of jaundice and a healthy penchant for sleep. Oh, and a small note: very high on the list of movies to avoid when expecting a child, and certainly the last movie to see when caring for an ill child, is "Angela's Ashes." So much for the pre-delivery pick-me-up. Persistent and unspectacular, Nathaniel's medical progress forges on. Although we continue to visit the hospital three times per week for treatment, we have had our share of good reports. Nate has been platelet and red blood cell independent for three weeks (no transfusions!) and his viral infection appears stable. As his new immune system struggles to establish itself, he has developed a mild yet slowly worsening case of graph versus host disease(GVHD). This process, when the new immune system attacks Nate's other tissues, may actually be beneficial when it is not overly severe. Researchers feel that a small amount of GVHD may serve to attack any leftover cancer cells, so our doctors were actually relieved to see the reappearance of a rash on Nate's arms and legs. The process of transplant places such a demand on a child's body that the doctors would like to see an increase Nate's calories and stagnant body weight. Common throughout our day, therefore, are lengthy mealtime dramas, notable for a sense of urgency and comedy. Like any self respecting parents, we have resorted to bribes, threats, pleas and out-right deception. Twelve short months since swearing off the evils of television, and we are now shamelessly trading three minutes of Barney or Elmo for two bites of grilled chicken or scrambled eggs. At least we have our principles. Vowing to not take anything for granted, we are starting to plan for our eventual return to California, and are happily beginning to arrange Nathaniel's important series of Day 100 tests. Provided that all continues to go well and that the results of Nate's tests are satisfactory, we may be able to introduce and reintroduce our boys to their real home sometime in September. It's a long month away and its hard to imagine at this point, but prepare we must. In the meantime, Nathaniel has made it apparent that he is going to need a little time to render a thorough opinion of his new brother. Although pleased with what appears to be a very animated new toy, he seems somewhat suspicious about how this whole "brother" thing will effect him. As for Ryan, well, we believe that he is a child born with some luck. He inherited a brother to be proud of, and a standard has been set for his mettle. And on the days in his future when he yearns for life to slow a little bit, we'll remind him that that was the climate that he first knew: one family, in one place, living one moment at a time. |
![]() Mom and Ryan, about an hour after his arrival.
Nate's first words to his brother: "Listen good, pal, I don't know who you are, but here's the way it's going to go around here, see..........".
OK, so he softened a little after the first day. See Nate's photo album for more current pictures. |
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