Tuesday, October 25, 2005 

58 Days Home and Looking Up

It seems that the Prednisone may be helping John's stomach. At least, the symptoms haven't returned in the four days since he started back on the drug. We had a nice steak meal last night and John "stomached" it well. If that continues, he should be able to benefit from a low dose, which could be temporary and would not be as likely to cause the side effects that can happen. I do think his mood is better, without having to fear eating. Hmm, I could use that diet - "food-o-phobia".

Debbie and I are going to take a quick trip to Santa Fe for her birthday this weekend. It should be fun, and the timing looks good from John's standpoint and state. It's been close to a year since we got to take a day or two "off." These couple of days will be in boots, jeans and a cowboy hat - our Halloween costumes. No doubt, John will have his own Halloween party while we are away.

In the next six weeks, I will be giving seminar presentations on "peer-to-peer file sharing", "compliance with the new FCC rules on interception of new forms of communication", "disaster preparedness and response" and "first legal aid for hurricane victims." I feel like Ed Helms from the Daily Show - designated expert on the topic of the day. Needless to say, I'm learning some new stuff in a hurry. There may also be a national conference on housing assistance for hurricane victims that Debbie and I might attend. With Wilma now and Alpha still out there, the need certainly is great and growing.

That's pretty much about it for now.

5:15 PM | |

Saturday, October 22, 2005 

55 Todays Toward Tomorrow

Whenever your child calls, two thoughts ring simultaneously - appreciation and worry. Yesterday, John called after his bi-weekly doctor's visit. After several "Can you here me nows," which you hear on the streets now more often than "Good morning," he asked for help in understanding the prescription for Prednisone he had just filled.

As I tried to back the conversation up a few steps with him, the doctor called on my other phone with some additional instructions. When we sorted it all out, my worries about John's stomach problems seemed to be shared by his doctor. The prescribed a low dose of steroids for him to try over the weekend to see if he improved. If he does, he most likely has developed chronic GVHD, and it can be treated with the drug. If not, he may need more or he may have some other problem, an ulcer perhaps.

John's white blood counts are trending down and his liver numbers up, neither a good sign, but not as alarming as high white counts, which would hint at a relapse. GVHD, for all that is bad about it, does seem to fend off a relapse, although it finds organs to attack as some form of exercise in the meantime. For all the wonders of medicine today, they still have nothing better than steriods to deal with GVHD, and the list of side effects are long and do not include being able to play Major League Baseball.

The connection between Emory and the long-term care group in Seattle does seem to be working well and a help. By the end of the day Friday, they had consulted and agreed to take the next step in reducing one of John's immune suppressant's on the 25th and tentatively decided to increase an antibacterial drug. It is comforting to have that much experience and care from both groups working for him.

I've begun to see all this as the new normal, too much like the natural disaster news of the world, a thought always lurking in the mind. It has to be a burden for John to live wondering what might go wrong inside today and not be able to schedule tomorrow. He's quiet about it.

Much else goes on around us - house painting, aging dogs, broken toes, work and more at work. It goes on around you and you do your part, but you aren't quite there all the same. Funny, but not being able to think about tomorrow makes today sort of hard. Still, doing things seems to help, and it's time for that.

8:12 AM | |

Sunday, October 16, 2005 

49 Days and Counting on More

The news from the world according to John at this point is mixed. His stomach issues remain modest, but they remain and they uncomfortably resemble those from a year ago just before he wasa diagnosed. He shows no other signs of relapse, so GVH seems the better thought. Thus far he is treating it with more and more antiacids. We will visit the doctor again Friday and see if another endoscopy is needed to consider a return to prednisone.

On the other hand, John does seem to be regaining some strength. While taking a bath Thursday, he stretched out his legs and pushed them through the tile wall. Admittedly, it was a 100 year old wall, but perhaps our jokes about his treatment creating super character powers might be true. I taped it up and added a sign, "Soome things only God can fix. For everything else, there's duct tape."

The house is being painted, which is a challenge for John to sleep late, especially with the dogs barking at the painters. Most of his waking hours involve after class and evening activities with his friends and girlfriend. Two of the friends teach at a school that works to mainstream autistic kids. It takes a special person to take that work on.

Courtney sees us rarely for one just two miles away, which is a sign that she is getting what she needs from SCAD and Atlanta this term. We are waiting to see what she decides to do next.

I taught my "disaster law" course to a group from the Gate City Bar yesterday. They will be able to locate many hurricane victims in their communities and do a lot of good. BellSouth has taken the materials and now has lawyers regularly traveling to the affected areas to counsel the thousands of employees they have who lost everything. Chaos theory asserts that one butterfly far away can set off a chain of events that cause a hurricane. Fortunately, kindness too can multiply.

Debbie's having a much needed night with a friend out of town - a nice break from the bumpy road we travel on the return to whatever normal life may be. She was able to participate in the High Holy Days over the past week, the sharing of which gives strength and perspective, something we all could benefit from.

There is more to day, but much more to do, so ...

6:03 AM | |

Friday, October 07, 2005 

40 Days and Nights

John's life is a bit of a wilderness for now, passing time without much purpose while his body grows stronger. He says he feels about back to where he was shortly before the leukemia symptoms surfaced.

I can tell he is not himself yet. He seems something like a normal twentyish college student living in a malaise but never energetic or enthusiastic. It will take time, but I hope he grows stronger. Living with a crippling disease for long times has to wear on your will. It's no wonder that heart attacks can lead to depression, as the studies report.

John has his circle of close friends and he seems to be the one that connects them. It is good for him to have his new girlfriend to connect with and she seems nice. (Parents need not to have too strong an opinion about such things, since children will react the opposite way to their views).

So, with all that in context, John threw up Wednesday. That is a big bump in the road and cause for concern, if not alarm. He seemed better Thursday and sees the doctor today. Hopefully, his blood counts will remain good and it will be only a bump. Still, it is a reminder that we could go back to life with leukemia on any given day, instead of worrying about whether he is growing stronger.

Living in crisis, with one thing to focus on, is easier, in some ways, than trying to prioritize and deal with the many things everyday life presents. In a crisis, there is only one thing to do and you don't stop to consider the odds. Normal life brings too many small things to juggle, and a sense that they matter more than they really do. It's morning now though, and time for the day's circus.

6:52 AM | |

About me

  • I'm Randy Cadenhead
  • From Atlanta, Georgia
  • My son John was diagnosed in November of 2004 with Acute Myelogenous Leukemia (AML). Since then, he underwent three rounds of chemotherapy and received a bone marrow transplant in Seattle. This site is about his experience, as seen through his father's eyes. Links to John's website and to his own live journal are below.
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