Minding the Gap is sometimes discouraging

Life has a way of intruding on the firmest of plans. And it is bad enough when one family member becomes overwhelmed. If both responsible parental figures in an otherwise dynamic family consisting of multiple physically challenged and dependent adults are unexpectedly afflicted, the "gap" understandingly becomes unmanageable. That is a brief outline of just why this site has been inactive.

Suffice it to say times have been both tough and challenging, but the Dweet's faith (and their bodies) continue to survive. The short version reads something like the book of Job, except Mrs. Dweet plays the role of Job and her husband fills in some additional background and color by impersonating a new character called Job lite!

Mrs. Dweet was diagnosed last summer with an extremely rare lung condition, and at the beginning of 2006 was not quite holding her own against the disease (PAP). She is continuing a daily, self-inoculation medication regimen, and is in frequent contact with a research specialist physician at Stanford. She is on oxygen 24/7, but has learned (with her doctor'’s help) she can spend a few quiet periods off it on occasion, and gladly takes several brief respites each day from dragging the long tube [or a rolling tank with a short tube] around behind her. But when active, or sleeping, she needs the O² to cope and survive.

She has a blood test twice a week, with results forwarded to her doctor the same day. The key element they check is her blood'’s ‘white count’ levels. The medication was designed for some types of immune deficiency patients, and it supposed to stimulate the growth of white cells in the blood. In patients like her that do NOT have an immune deficiency condition, her own body'’s natural reaction may be to ‘fight off’ the medicine. When that happens the normal dosage is increased, and increased, and increased again until it finally theoretically overwhelms her ID system and goes to work in her body wherever bad things are happening, in this case the tiny air sacs in both lungs. Once she reaches that stage, it should take a month and half or so to de-protein-ize (49er's term) those myriads of tiny sacs, a few at a time.

As time goes by more and more information about PAP has become available on the internet. The Dweets have discovered data showing 90% of patients respond favorably to lung lavages. She didn'’t. Furthermore, about 50% of those that did NOT, do respond well to the medicine inoculation regime. Only time will tell if she will be in that group. (Regardless, the Dweets know the Lord is in charge and trust on His mercy and love for them).

The continued treatment prognosis beyond that point could be grim, but she first must see a hematologist before the end of the January to determine why her white cell count is so counter-intuitively low.

49er, after working as a volunteer in a special event in mid-August, and participating in an exciting (and emotionally rewarding) junior-senior PGA tournament, spent the balance of September helping out with grandson and winding down after both activities.

The first week of October brought elective surgery, which was successful, but two weeks later he had to have emergency surgery to remove about 18"” of lower intestine that had suffered too much blood loss from an undiscovered mini-stroke, and had subsequently ‘died’. That surgery was thankfully successful, but its result was the insertion in the lower stomach of a gastric feeding tube leading to the abdomen, and a large open longitudinal wound in the center of the abdomen, at first requiring thrice-a-day re-dressings. 49er was in the hospital about 12 days, and then home with almost daily visiting nurse care for one of the re-dressings, while Mrs. Dweet did the other two.

49er was making good healing progress with the wound, for a few weeks, but eventually developed some type of infection and simply stopped eating. He then dropped about sixty pounds but grew increasingly weaker, so the doctor put him back in the hospital in November for a 5 day ‘tune-up’. He also started daily tube feedings then and 49er was sent home with a gastric pump that pushed liquid food 23 hours a days. So he had something to carry around that seemed to match what Mrs. Dweet was carrying around. Great fun!

Since then, 49er has weaned himself from the tube feedings, the wound has almost healed and the tube has been removed. He is once more eating on his own.

This just in: Update from Mrs. Dweet: After being on the max dose of her injectible meds, she saw the hematologist at Stanford just this week and came away with more questions than answers. He saw some things in her blood that could be problematic. He cannot explain why the white cell count is below normal when the medicine's job is to increase the white count. There are a couple of possibilities, but he has to find out how to test for these. In the meantime, she will continue on the meds. She has another CT scan next week, and pulmonary function tests coming up mid-February. So the Lord continues to ask her to trust Him for the unknowns, and she has determined she will. As always, her only prayer request is she remain in the center of God's will. She know's that's the best place to be, with or without the crazy oxygen tank she lugs around!

But to get back to minding the gap. She and 49er have become increasingly tired of answering the reasonable and well-intentioned question, "How do you feel"? Or, "Any improvement?" Or many similar variations. After each hospital or doctor visit, and after repeatedly experiencing the disappoinment of not receiving a direct answer as to 'why'?, it takes longer and longer for them to wait on the Holy Spirit and allow Him to rebuild their spirit in His likeness. Sometimes they just don't want to be around people for a few hours or so, so they won't have to "be brave" for a while longer. Pray for them, and if they have been short with you or let you down at any time, please forgive them and try to understand.