2005 Story Set
| Date: March 29, 2005 In October 2004 we went shopping, DVD player, Bose earphones, movie DVDs, and the like to make going back for yet another chemo tolerable. Because that's where we were in our thinking. I see the bills as I am preparing my taxes I remember the days. I remember the Apple Store, Bose, Target, and his hunter-gatherer mode. I remember, him being tired and we sat in the surround studio at Bose for an elaborate demo of movie theater in the home and discussed where to put one, and I got the radio I always wanted (early Christmas) and he got the $300 noise reduction earphones. We were in the mall between doctor appointments while we struggled to figure out what to do with the information that he had relapsed. Which hospital. Which treatment. Or just let him die. An option they gave us. More than once. I remember my child. I knew we could loose him. We were fighting to beat the leukemia that was hanging on. We had talked to different doctors. Israel. Seattle. I had called around frantically to see what options we had. Besides take him home and let him die. A second stem cell was his best chance. Everybody said so. I listened. He listened. We said, OK. We will try this. We want to win this war. They warned us. If he relapses again, it will happen faster and the leukemia will come back stronger. This chemo round was to be done in unit E1 - but they had no room - so they moved him around - I believe we toured the lower regions of Stanford. There was always someone sicker. They pushed him from one unit to another. Almost like he was not worth the effort. Nothing makes a mother madder. I got to know that between the units, the nursing is inconsistent, the communication between doctors and nurses is crude at best, and between doctors in different units. different departments and different specialties is a nightmare. I have first-hand horror stories. I was busy watching over my son and I thought, incorrectly, that they had all his records. Lord knows I went over them orally with them enough times. Over and over. I went over allergies. (They gave him medication he was allergic to anyway. Forgot the red band at one point.) Treatments. His history. We were to have a PIC line - which was a disaster. Two attempts in one arm had me screaming up the walls. The third in the other arm worked - all of 3 days. They then put in a lumen chest port - except the clowns put in a single lumen line! On a cancer patient! He said they were discussing which to put in over his head on the table! (Malpractice is a word that applies here.) It remained a problem up until the PICU - when we put in several lumens for the dialysis machines. I was busy fetching warm blankets (in some units you have to ask for them - in others you can go get them), ice packs for fever (same thing - do it yourself or wait for it), ice and drinks and anything else he wanted. I arranged for a caregiver. (His out of work girlfriend.) He had yogurt, milk, sterile water, sodas. He wasn't well-cared for always if someone was not with him. We covered him with company most of the time except when he was sleeping. Somewhere along the line, I learned that there is a lifetime limit to chemo - computed how? Did they take into account that we had established four years earlier that my son was fragile? Evidently not. Bulling ahead with the one-size-fits-all theory, they gave him too much. It was a one-day thing. It was rough. Recovery dragged on and on. In fact, his body never did recover. He was never able to eat or drink as he had before this last round. I watched in horror as he lost weight. He "looked good" to people - because he had been heavy. I knew better. He was not eating. He said he was hungry, tried to eat, but said that it "sat there". Never getting to the stomach. Except in trickles. He could chew beef jerky because it became liquid. He could not eat pizza. We tried steak. We tried salmon. Fish - yes - beef - no. It was then I knew that something was very, very wrong. He was trying. He would throw up every other day and start again. Small things (tiny noodles, rice, soup) we were thinking could get through. He drank a lot of soda, energy drinks, tea, when he could. Ice Cream was a problem. I kept asking, what can we do? What is going on? They kept telling him to try harder. They had no clue. TPN? (Feeding by IV.) They were thinking about it when he relapsed again. He was already down to 177 lbs from 245. The PICU, when he got there, said his GI track was destroyed by too much chemo. He would never recover. They have seen this before. Too often. He went from 245 lbs to under 170. He was slowly starving to death. And the leukemia kept coming back. He died February 25th, with the leukemia in blast-crisis. His white counts had zoomed to 8, never having been over 3 in four years. That's not normal. That's evil. The bad cells were having a field day. He was too weak to fight any more. A fighter, he had taken it to the mat. His body was shutting down organ by organ. It was over. He left me with the understanding that: 1. We need to remove all known AML-causing drugs from the ALL (another leukemia) protocol - like Etopicide for one. I remember that he had taken that drug. It's listed on the web as a killer. 2. We need to stop this "one size fits all" mentality for chemo and find better ways of setting up dosages. We are giving people too much. We are killing people before the cancer can. All this is spurred on no doubt by drug companies that collect $300 per vial of Nupergen, $1,500 per vial of Caspofungen, $1,000 for anti-nausea pills, and so forth. You just thought hospital aspirin were expensive. 3. We need a better stem-cell matching program - my son's cells were stronger than the donor's. How do you measure that? [Stem-cell has replaced bone-marrow transplant - same donor base.] Because that is why his stem cell transplant did not work. 4. We need non-chemo solutions for leukemia. Killer cells. Nanites. Something. Perhaps genetic manipulation - be able to "fix" the problem when chromosome damage occurs. 5. We need everyone covered with heath insurance and secondary insurance. My son probably incurred about $10 million in medical costs. He was bracketed by nearly $2 million at the start with the spinal meningitis coma when they gave him diet information I know is wrong (there is a neutropenic diet - we have a book from Stanford - could they send that to Lucille Packard?), and the $1,039,200.59 for the last five weeks. In between was a trying 4 1/5 years with occasional hospital stays, lots of drugs, and the wheelchair. 6. We need electronic database medical information that is finger-tip accessible and red-flags when a patient has allergies, including to chemo. Stop the damn mistakes! 7. We need much better communication between all doctors and nurses working on a patient no matter which unit, which department or even which hospital. All information should be pooled. 8. And charting by hand??? What year is this anyway? We need to do this better. We need to stop killing our children. |
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