The Last Intense Phase: DAY 1

It was hard to get up this morning. We only accomplished part of the appointments. It is the nature of the beast.

The Plan: 8:15 blood draw,
9:00 a.m. appointment,
10:00 with Child Psyc,
11:00 spinal fluid out, Methotrexate in,
11:30 Vincristine and Doxorubinson IV push. Pick the the scary steroids and head home.

The Reality: 8:45 blood draw
10:00 a.m. put in a room to see Dr. No ANC back so no decision can be made about the Spinal Tap
10:00 miss the Child Psyc appointment
10:20 see Dr.
10: 50 Spinal tap
11:15 Vincristine and Doxorubinson
12:30 home.

Not bad. Bad to miss the Child Psyc appointment. But what do you do. I can beat myself up for trying to get everything done in efficient manner. Or I can just let it go.

I did realize that I have not learned much about the whole system. I should have known better. I should know that there is no way Hem\Onc appointments work right. As far as we have come, we still just don't get it.

We are on the path to maintence. The goal is in sight. I counted the chemo dose until the end of this phase and it goes sort of like this.

28 doses of Dexemethosone
14 doses of Thiuguine
5 doses Vincristine
3 doses Doxorubinson
3 Spinal Tap and Methotrexate
1 dose Cytoxon
8 doses ARC

We can do it. If I can live throught the two weeks of Dexemethosone, I can climb Mount Everest and clean out my basement. It is the worst of them all. It is like being on a roller coaster on speed.

I feel like we are both seniors and only two months left until the final summer before we go to college. Remember that feeling. The anticipation, the anxiety, the excitement and the sheer terror. It is ironic that we have hit this phase as school winds down. We will make it to graduation.

We will be the older, wiser individuals that will calm the nerves of the new parents. The ones that have not realized the hospital binder will not do and you must upgrade. They are the ones that look at our children with dread, and some shielded disgust. Our children have lost their hair and even if some of it has returned, it is not the same. They are secretly thinking they will avoid that fate. They don't know yet that it is the least of their worries and that when it happens it does with such stealth that you only notice when you see an old picture or you see a new parent with a newly diagnosed child.

We have earned our stripes and we will cross the line. We will be different people forever. We will be people that live in a very different way.

I have been too close to knowing the reality of loosing a child. I have had to fight with every fiber of my being from not going over the edge. I have had to look every day at Mrs. Shelley's rocker and know that it could be me. I could be the little old lady with the great smile and the sad heart having lost my only child in a sad way. ( I will tell her tale another time)

M-E is planning that moment of crossing. She wants endless Sushi, and raw bean sprouts, and pre-cut fruit, and store sliced ham. Or as she said the other day, "Mom, I want my freedom back." It is nice we will be able to do that for her.