10-19-09 Update from Laura

Is it just me or does it seem ironic that a man who sits at the beach in a wind suit, hat, and tennis shoes, has spent his life slathered in SPF 60 sunscreen and gardens in a long-sleeved shirts and jeans is peeling worse than a teen who laid out with Crisco on tinfoil and got burned? They say a picture is worth a thousand words but in this case it is worth 1,000 layers of skin. The photos, though timely for the Halloween season, give some brevity to the week that TGL has endured. Dare I mention Job?

Generally, our experience with induction has been 5-7 days of chemo with the effects of fatigue, fever, mouth sores, etc. hitting 7-10 days later; but, such was not the case with the chemo drug dad received this go around. The docs warned that one of the side effects was "hand, foot syndrome"; however, since the drug affects everyone differently we hoped for the best.

After his first chemo session on Monday 10/5, he experienced nausea and a blood clot in his arm where the pick line was. They moved the line to the right arm and put him on blood thinner to treat the clot. From then things went downhill faster than Thomas the Tank engine without brakes on the Matterhorn. By Thursday 10/8 dad was carrying 25+ lbs of extra fluid and had a rash all over his body. If he tried to stand he lost his balance as his small frame was completely unfamiliar with the extra weight. His hands and feet were so swollen and red that he could barely eat - but being the model patient - he still tried.

Mom called Sunday morning and couldn't get a hold of him. Needless to say, she was upset and headed down to the hospital. She went to his room on the 4th floor and was informed he had been moved to ICU. Sunday - Wednesday dad experienced hallucinations and was disoriented. He doesn't remember anything from Monday afternoon to Wednesday. When I went to visit on Thursday he described a dream which in my opinion was his experience for those scary hours. At the end of the dream after unsuccessfully trying to reach mom and rand on their phones, Rand came and picked him up - THANKS RAND!

He didn't sleep more than an hour between Sunday night and Thursday 10/15 and they did not administer the final chemo in order to stabilize him. He has been on oxygen and has had multiple blood transfusions per day. The hallucinations are gone and now he is completely wiped out. Ordering Dinner seems like major task for him. They wrap his hands and feet 3 times a day and his entire body is peeling. He has huge blisters, [as shown in the picture] and still has a rash all over his legs. Basically, the chemo burned his body from the inside out - NICE!!!

They believe that the combination of the nausea, pain drugs, anti-biotics and chemo caused dad's hallucinations and lack of orientation. The doctor told Rand these types of side effects are “normal” but not at the level dad experienced. Dad has had 24 hour care in the room to keep him safe and the caregivers at the hospital have been very impressive, patient and loving. One of them even trained to be an Olympic speed skater - just a factoid gleaned from Yah Yah who probably peppers the nurses/techs too much with inquiries. We are SO very grateful for the care dad is receiving. Not all angels are in heaven!!!

This has been a tough round

Dad is almost done with the chemo, but it has taken a toll. Thus far side affects include:

Head to toe skin rash
Severe bloating - he is carrying about 20 lbs of extra water
Blood clot in his right arm
Exhaustion - he hasn't been out of bed for several days
Constant temperature
Headache
Nausea

He is hanging in there, but it has been rough. Once the chemo is done we wait for him to recover, and wait to see if it worked. Stay tuned.

10-2-09 Update (by Gordon)

We have completed the various tests required to move forward with a bone marrow transplant.

The lung infection seems to have responded to the therapy and is not now deemed to be a problem.

Unfortunately, the bone marrow biopsy did not follow suit. The degree of leukemia cells in my marrow has approximately doubled (13% to 24%) and there are circulating leukemia cells in my bloodstream. These levels do NOT support moving ahead with the transplant plan.

The new plan has me entering the Denver hospital (PSL) on Monday morning for another round of induction. Chemo lasts for about one week and the expected hospital stay is about 4 weeks. A different drug will be used in hopes of finding something that will challenge the drug resistant leukemia. If we can drive the leukemia back into "remission," the transplant is still a possibility.

Have felt weaker and more breathless the last week. Not looking forward to next week but we are committed to play the string out and see what happens.

Thanks for your many cards, pies, website comments, emails, and prayers. I will rely on my daughters to keep the post up to date but there probably won’t be much to report for at least three weeks.

Gordon