2002 Story Set
| September 1, 2002 Johnathan Wellington White, named for grandfather and Uncles, was packing to leave home and getting ready for his driving test in the summer of 2000. He was on his way to San Diego, in just another 4 weeks, as soon as the tenants moved out of his mother's San Diego house. He would live there with roommates while going to college. It had been his plan to do this since his mother moved to Silicon Valley in 1995. He also was not comfortable with a lump on his neck behind his ear. The doctor at the walk-in "doc in a box" had said "cyst". "It will go away." A psychic email friend of his mother's said she didn't like the sound of his having a lump. His mom was dodging her training classes and trying to figure out what next to do about him when he discovered he had another lump, behind the other ear. Mom felt his jaw, since he was also increasingly lethargic, and decided that it was "severe swollen glands, time for antibiotics". A brief thought also flashed. That thought was "Lymphoma". Because there had been talk of a cousin who had to have his glands removed and she remembered that from her childhood. So John was driven to her job and she called her doctor since she was going anyway and they said, "Bring him in". Same day, no wait. Her doctor said , "Doesn't feel right". And he handed Mom a card. "Make and appointment and go see this specialist." Well, Mom needed a blood test - right up Welch Blvd, and on spotting the doctor's office on the way to a back-door Unilab, Mom pulled in and decided, "We'll go in and make an appointment." Somehow making a call by phone the next day did not seem reasonable. It was also, 100 degrees. At the specialist, they said, "Oh, wait a minute", at the mention of her doctor's name. The girl came back out. "If you'll wait until he sees his patients, he'll see you." This is strange. Doctor's don't do this. Mom walked the two blocks to the blood test and walked back. (Big mistake in that heat!) John stayed behind. Around 6PM, the specialist felt the lump. "Do you have a cat?" Be cause it seems there is a Cat-Scratch Fever. It was either that or ----- and he didn't need to say it. Mom was rooting for the cat. He would consult with Mom's doctor and call them. Two days later, John had a biopsy. Mom was getting ready for a date with Fabio. The Doctor said not to cancel. Yet. It would take a week to get results. To the day, Friday, July 7th, as Mom was walking out the door for the airport, the doctor, on vacation in Boston, called. Stanford pathology had found it wasn't Cat Scratch Fever. Stunned, Mom had to absorb this. Should she leave and take John in Monday? "No. You can't wait for Monday. They are waiting for him now." He gave her name and directions. 30 minutes later, Johnathan was at Lucille Packard Children's Hospital and being admitted. He had Acute ALL Leukemia. And, strangely enough, he had no normal cells in his spinal test but did have them floating around in his blood stream. OK. Now what? They said - intense chemo for 6-8 weeks then he could go back to a normal (as much as possible) life while having chemo. "Lot's of people do this." John would be registered at Ohlone for the fall and Mom would tell them he wouldn't be there for the first two weeks. There were concerns about insurance (he turned 18 in the hospital). This would hold it while the problem got sorted. There was no discussion of prognosis. A book said 75%. The doctor's didn't say. There was a study - and Johnathan said sure. He got Methyldrexate and the heart protectorant. One arm of the 4-arm study drawn at random. Remember this. Mom read everything and signed. He was under 18. Even after 18, he left the paperwork to Mom. They proceeded to install a port in his chest. They did a spinal (draw and replace with chemo - 10cc). They did a bone marrow test. They hooked him up to other stuff. Mom worked and showed up in the afternoon. Except for treatments when Mom would be there. They watched his kidneys. We have since deduced that his kidneys were about to be shut off by the tumors. Three more days would have killed him. They did ultra sound. And we watched the kidney tumors shrink. All the tumors shrank and went away that first week. He had been given Methyldrexate. After the first week, he looked like a car wreck. The tumors were gone. And he was tested to be in full remission. He fell in the shower - he had to pull the emergency cord while laying naked on the floor and six nurses came running. After that, he refused to shower without Mom. He has a scar on the back of his head. Mom made almost every spinal test (except ones done while he was unconscious). Ever hold your child while they drive 5" needles into his spine? On minimal drugs? Ever watch a bone marrow test where the doctor jumps up to put his full body weight on the punch to break into the bone? And hear it go in? And then the port. John had a single head chest port - because he could shower easier and it was easier to keep clean, etc. Mom read everything. Mom reads 10,000 words a minute and retains 90-95%. It just seems like she's fast only glancing. They had said - "A remote possibility of bacteria in the port" - and on asking, they would "treat it with antibiotics" if it happened. Ho hum. We didn't know the following tidbit at the time: If there is a side effect to any drug, Johnathan will have it. He got the bacteria. They can tell from the fever. They hook up four antibiotics to "save the port". Because the surgery is risky. Because what are the odds the second one is clear. Because they felt they could save the port. He reacted to them all. He peeled like a snake after turning bright red and blistering from the top of his head to the soles of his feet. Teams of doctors and students came to see. Blisters ran together and made water balloons when he showered. Mom put on purple gloves and popped them. The foot pain was very bad. They tried drugs. They gave up - and put in a new -twin headed port. He needed gowns - and the children's gowns were too short! A nurse stole four gowns from the adult unit. Mom washed them in rotation. He developed the fungus on the lungs. And the drug from Hell was added to the mix - under Mom's supervision. The first time, they didn't know how much Demerol to give and when and he bent the bed rails right over and off of the bed while screaming. Mom sent three doctors flying to the pharmacy. Took three tries (3 days) to get the drugs sorted out. Mom supervised the drugs from then on and verified the timing. Mom also supervised port needle changes (every 7 days) and IV tube changes (every 3 days). He went through about 5 beds before he was discharged. In October, they let him out. He kept collapsing and they would rehydrate him and send him back. Ping-pong. They put him back in on Halloween (Oct 30th - they would not wait a day!) While in, he showed a slight fever. "Go to Houston" they said. John's older brother stood in for Mom. Thirty-six hours later, they called Houston. "Get back. We're losing him. Spinal Meningitis." Aha. There was a reason all this time for him being so weak and dehydrated. They called 15 minutes after another psychic had dragged Mom from the room at the conference and said, "Keep the walls up. He'll be all right." Which made no sense until the phone call. Mom raced home. As Mom was driven to the airport the psychic said to picture him. All the way home, she pulled him in from down the tunnel that he was traveling. Reeled him back. And did not let him move from that spot for the rest of the trip. When first on board the airplane, a man came to help lift the carry-on bag into the overhead. Men never do that. The plane was delayed 45 minutes. The pilot flew like a bat out of hell and made up the time - although Oakland air traffic would delay the plane again. Once landed, a man came and lifted the suitcase down from the overhead. Men never do that. At the baggage carrousel, a man helped lift the bags off. Men never do that. In the parking lot, a man walked over and put the bags into the back of the truck. Men never do that. Mom drove at 100 on 101 and 45 through Palo Alo. No cops. Cops never do that. On arrival, the doctor drove back in and said, "Now we think he'll make it. We didn't think he would when we called you." The psychic sent a blessed cross. It was clamped to the bed. Prayer circles formed. The psychic saw a white light over Johnathan. When the nurses clumsily sent the cross out (air therapy bed heavy sheet), she sent a second one FedEx. The nurses were briefed by Mom on the consequences of losing another one. John overbreathed the equipment. Mom and brother could program the air bed, read the displays, knew what was happening when. After 10 days, John woke up. His eyes jiggled side to side. He asked what had happened. He could not lift his arms. He could not lift his head. Mom told him. And told him every day for 10 more days. One day, his face registered what was being said. He was well and truly awake. He had no brain damage. He was also helpless. And 183 lbs. Down from 245. He was in Morphine withdrawal for about 6 weeks. Then they said, "two in 12 survive Spinal Meningitis while Neutropinic". He was throwing up constantly. No matter the drugs and the food, if it went down, it came back up. In frustration, in January 2001, they did a procedure to check out his stomach. Endoscopy. Done it before. This time, he went into another coma. His heart rate dropped to 20, again. Dramamine was ordered, again. Until Mom saw that the cross somehow was not with him. Brother fetched it. Put it on the bed. He woke up and sat up. The doctor pulled him off the study (missing too much) and off full-level chemo (he's too fragile). [The study had also been stopped at around this time - Methyldrexate was showing 95% success for those who could stand it. All ALL Leukemia patients now get it.] The doctors were as frazzled as Mom was. The parade into the emergency recovery area had tipped Mom off. Johnathan has permanent damage to nerves in his feet and has lost hearing. He can't hear high frequencies. He has tinitus. He had met Louie at about this time. He went to rehab and met Rain. We dragged him from rehab in a wheelchair to a TNT kickoff. A little bundle of tired boy. He came home. He began to learn to walk. He was able to stay a few hours a day on his own while Mom worked. Mom worked part of the day at home. He was put on rotating pairs. He is on low-level chemo. His hair, thin, has grown back in parts. He got his upper body strength back wheeling himself around. He is still in remission. He stood up on Sept. 11th in a fit of rage. He staggered out to see the Tacoma in December 2001. He left the wheelchair shortly thereafter. He's back to 240 lbs. He's working out. He's back taking 1-2 classes at Ohlone. He's been an honoree for TNT for 6 teams now, always the Tri team - Louie's team. He's thinking about packing for San Diego after chemo ends in April 2003. We do not discuss relapse. It is not in our vocabulary. The psychic still sees a white light above him. He's planning on earning a PhD. Child psychology and education. He wants to change things. Oh yes, the cross came home and stayed by John's bed at first. As he got up and got better, it could not be found. After Sept 11, in October, the day before John was flying to Orlando, a plane went down in NY. Mom found the cross. Things calmed down. It is missing again. Be a good thing if it isn't needed again. PS: Johnathan now has pneumonia and a rash from a Chicken Pox Redux., aka, shingles. He is in isolation again. Ohlone has to wait. The cross is still hiding however. |
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