Leif's Leaving

I had been thinking i needed to leave. Mary had gotten snappy at me and I felt so ragged.  Help has dropped off so I need to rally some people for when I leave. Everything triggers both of them. its just so sad here. tonight we ate thai food and I  got them to watch an episode of brain dead- not terribly successful. then eric went to bed and mary and i binge watched fleabag. Corbin the neighborhood cat came in and lay down on the couch between him. Mary is allergic but pet him anyway. I can here her weeping in her bedroom. eric is with her now. I have to remember I am holding on by a thread. Today I posted a picture on facebook of  eric and mary lying on the floor by the crematorium oven while leif burned. I hadn't posted in a while. this is what I wrote: This is such a hard picture to post: My friends Mary and Eric lying on the floor after pushing an open box containing their son Leif into the crematorium oven. Eric had made a small wooden viking ship for Leif's body whi

Leif loved wolves. The days before he died he watched the movie Wolverine over and over. His wolf stuffed animal was cremated with his body.

Witnessed cremation. Fernwood mortuary, mill valley. They slid the box containing his body into the oven. The door closed and Mary pressed the button. Eric had made a wooden viking ship that was put into the box. Then his body was laid into it. We filled the boat with herbs and flowers from his home. The parents collapsed on the floor.

last night. I want to write every moment down of the last moments of his life. but I am so tired. we got to the hospital around 5. He seemed well. Mary and I were excited about some research we were doing. Eric left. the transition was smooth. no fights. Mary talked to the nurses and I stayed by Leif counting the seconds of each minute until she returned I had tried to distract him by showing him photos of his lego guns but he said "do I have to pay attention?" and I said "no" and he barely nodded relief, closing his eyes. I kept counting rhythmically. She got into bed to snuggle with him. His fever came back. Drugs, anxiety, shallow breathing. sleep. When he woke up he seemed more alert, the fever down, but he needed a diaper change. I said that when he came home I wanted to be able to help his mama with his changes and asked if I could stay and help. Usually he is quite adamant about everyone leaving the room except a parent and nurses but this time he said

what tomorrow looks like. the funeral vehicle will arrive at the hospital at 10 am. there will be paperwork to be done. When that is ready the hospital will wrap Leif in a sheet and wheel him and Mary down to the vehicle. He will be then wrapped in another sheet (not a plastic body bag) for transport to Fernwood Cemetery in Mill Valley. Once there Mary should be able to stay with Leif. Paperwork will need to be done. At that time they will be given the option to cremate or bury. My understanding is that cremation takes a few days due to paperwork but burial can be immediate. Please let me know if that is not the case. Mary and Leif will stay in an airbnb in the area. within 4 days cremation will take place. Mary and Eric will be present and able to watch.  During the 4 days we hope they will be able to consider what they want to do. I think mary will want her friends to visit her at Fernwood daily and Eric will have the opportunity to hike and be alone in nature. Volunteers Need

Probiotics were mentioned today by the ID. The diarrhea is out of control. It is not getting better. Leif allowed me to help in the diaper changing. It is basically thick blood.   Probiotic questions: 1) As a last ditch attempt to help his gut is it possible to take Leif off all antibiotics and aggressively try probiotics to try and stop the Diarrhea?   2) Is it possible to add probiotics without stopping the antibiotics? Sepsis Questions: 1) What is the possibility of sepsis now? 2) What would be the possibility of sepsis without antibiotics but with probiotics? 3) What is the chance of sepsis with antibiotics and probiotics? Is there an expert on this anywhere that could be consulted?  

This is a worst case scenerio- I wrote this in a panic and I think it is perhaps almost wishful thinking on my part because it means Leif has a chance at life. I wrote it and now, only a few hours later,everything has changed. there is a calm. with the question of DNR I am becoming deeply concerned about Mary's mental health. Eric is adamantly opposed to DNR at this time. this is from Eric's emotional support person D: From what I can tell Mary wants to end Leif’s suffering and her own and she wants a plan to do it. The open-ended nature of the current situation is intolerable (in the most literal sense of the word) to her. Mary is the one disseminating information so is her information actually spun to such a degree no one actually has facts within her support network to see Eric's side? this is a really terrifying idea. She is constantly constructing and reinforcing the argument that  the situation is beyond hopeless and Eric is just not willing to see it. C

a rare calm moment  "Both my friends have their self destructive ways to escape what is happening. Eric drinks. Mary despises Eric for his drinking. I see my friend Mary as a tormented genius with insanely low self esteem which she won't acknowledge, instead attributing her thoughts to Freud's Death Instinct (!?!) She has no idea of emotional boundaries and then is filled with self loathing for falling to pieces. Sometimes I think it's Who's afraid of Virginia Wolf in pediatric cancer ward." I wrote this a few days ago when emotions were running so high. There seems to be some peace in the last few days- not from grief but from anger. Mary wants a map of every possible thing that could happen and what the response will be and this just isn't going to happen. H came over yesterday to the house and spent some time first with me and then with Mary. She was so helpful. She nursed her husband back from cancer only to lose him in an accident...

What Leif wants What leif has Lego guns are tiny parts. Not the tiniest, but pretty damn small. I have spent the better part of two days sorting through Leif's Lego collection in search of all weapons but especially guns.  Some of the other weapons include spears, swords and battle axes, but then I couldn't help but think of things that could be weapons like shovels and pitchforks and how about a broom? there are throwing stars but how about propellers? Skill saws seem a definite yes. Horns? A scorpion? What if the flowers were just a different kind of throwing star? And eyeballs could be bullets that see where they are going. A banana? a fantastically subtle weapon. But then Leif wanted "real" weapons not my made up nonsense. So i thin sliced the selection into little baggies, one with only real actual bona fide guns, one with legitimate Lego brand weapons, and then a third with what I called weaponizable parts. I found Mary on the floor crying, franti

The current chemo being tried is Elzonris. Leif needs a 5 day round. That totals $342,147.00 It has a %1-5 chance of working. It has never been used for Leifs particular form of leukemia the the % chances are, I think, a guess. The doctors wont officially know if it works for weeks. They will then do a bone asparation to see the marrow count. His last marrow count had the leukemia at 23% Blood blasts, as they are called, will be seen every day or so. Right now those numbers are hovering around 12% Yesterday Mary had one of her breakdowns. I got in touch with our group and asked someone to call her because she was suicidal and I thought someone better than me should talk her down. Evidently today she also fell apart. She has a fantasy of the partner she wants to be with who would be helping her through this and Eric is not meeting her standards at all. Her focused rage at him is a way of blaming him for her inability to be present with her son. The argument goes: if Eric did everyt

day three of my visit here was unimaginably difficult for the family. They did not give Leif steroids that day- can't remember why so he was in a lot of pain. Eric had left when I arrived around 2. Mary texted him and he did not return her texts. Her level of agitation and frustration at him just kept rising as Lief's pain could not be controlled. He was sweaty with horrific diarrhea. Changing him was nightmarish with him screaming in pain, discomfort, humiliation- wearing a diaper at 8 years old. my god. When he sat up to play Minecraft he keeled to one side with fatigue and then became frustrated and angry. he screamed over and over "mama I am so weak!" He wanted to simultaneously watch x-men and was angry we could not download "the Lego movie 2 video game" from the app store. Mary was convinced Eric was at home drinking and was so bitter and angry, recounting every time he had ever "not shown up." She seemed to be building a case in which she