This is a post from early on, July 27, 2007 that I am going to put in the proposal.
Today it is another lumber puncture (LP) where they do a spinal tap and they shoot chemo directly into his spine. Itâ€™s his 3rd one. *sigh* He is sedated for it. When they first did it there werenâ€™t as many leukemia cells as they thought. SO that was good. Dunno what it is now. Havenâ€™t heardâ€¦which we look at as a good sign. Itâ€™s when the docs wonâ€™t leave you alone you worry.
Andrew was on morphine for the severe pain from the mouth and throat ulcerations, from the chemo. But then you have the side effects of even that to deal with. Like low oxygen levels, itching, so they of course have yet another drug to counter act that! Itâ€™s overwhelming to say the least when you are use to treating things holistically. Talk about feeling helpless, out of control and having to surrender to a situation!
Andrew was starting to lose his hair and we had to finally tell him. He was devastated. He spent the day processing that. Like he doesnâ€™t have enough to deal with. SO we are going to do a sacred ceremony tonight and cut his hair and then bury it by a tree & ask Mother Earth to return it to him plentiful and quickly. But not like some hairy Italian or anything!
It makes me sad as I sit here watching him sleep and see all the hair over him. With everything he has gone through he has handled it w/such grace and courage like Iâ€™ve never seen.
He was in the bathroom the day before and I was sitting on the floor talking to him. That is a huge deal for a shy teenage boy to let his mother come into the bathroom with him and allow her to clean him up. He allowed it with such grace. I told him we were going to get through this fine and only remember the special moments we shared together. He said he knew that.
He then said, â€œMommy, Iâ€™m happyâ€ I looked at him puzzled and said “What?” I was thinking, “are you crazy??” After all this? The diarrhea, the fevers, the pain so bad in his throat he can’t even swallow his own saliva and he is still happy? How could this be? I know so many adults who have so much and are so miserable and this CHILD is going through such trauma and he is still happy! He replied, “See all this going on here?” He pointed to the IV pole filled with machines and bags, and the hospital room, and said “All this does NOT decide if I am happy. I DECIDE if I am happy and I am happy!” I looked at him in such awe. He never ceases to amaze me! I was speechless. I know! Hard to believe but he made me speechless a lot with his incredible wisdom and insights into life.
At 1:00 a.m. Andrew told me he was ready to have his hair cut. I had nights because I kicked doctors out of the room during the day and they made me cry. SO we decided that the night shift was more my speed. I decided to just stay awake the whole night because it was too hard to fall asleep and have buzzers constantly going off and Andrew needing help with something. My eyes would burn, I would be groggy from exhaustian, it was too hard so I just stayed up all night and blogged, watched TV, and talked to the vitals techs. I enjoyed both Miss Weezy (she insisted we call her that) and Haffey’s company. I had completely different conversations with each of them. Haffey being from India, we had very spiritual talks. Sometimes Andrew would stay up for them. It was right up his alley.
Ok, that explains the 1:00 a.m. haircut Andrew wanted me to do. Here’s the irony, the chemo floor, you know, the floor where kids lose their hair? Not a pair of scissors to be found! Not even an electric razor! How can this be? I was shocked by this and the fact most nurses didn’t know that the hair gets sore as it’s getting ready to come out! My friend Lori, who is my hairdresser and the mother of Andrew’s 2 best friends, told me!
Someone went to emergency and found me an electric razor and scissors for cutting bandages. I began to cut Andrew’s hair, it made me sad because of why I had to. It was the next step of accepting this was really happening. I cut his hair short. I am a beauty school drop out so I cut his and Martin’s hair on a regular basis. I get his short enough to use the razor. I had to be very careful due to the 3 bed sores on his head. Now that looked odd! I did not put the bright lights on, we had dim lighting. I did not realize how sharp emergency razors are! The least little move and you have cut really, really close to the scalp! By the time I was done, the one side of his head looked like Ray Charles or Stevie Wonder did his hair. OOopps! Yea, I got Lori to come up and fix my hair butchering job.
We kept the hair with the intention of having a ceremony with it but we never got a chance to, and now I am glad we didn’t. We still have his hair in the bag we put it in that night.
Nothing can keep our son from looking handsome! He never did go bald, he always had what we called his, “fuzzy goodness.” His hair was like an Army cut is all. He had his eye brows, eye lashes & hairy legs. It wasn’t until the 3rd round of chemo that we started to see the eyebrows & eye lashes thin and that was only maybe 2 weeks or less before he ascended.
He was on the computer the next day after his hair cut and saw his reflection and said “I look bald!” I said, “Feel your head, you’re not bald. Your hair is just light in color.” He was glad to feel his hair, then he informed me “Mama, I have a Brazilian now!” We LOAO with that one. I told him it would make my job easier now! Don’t need to go into that one do I? I didn’t think so. *wink* He knew what a Brazilian was because I had worked in a full service spa where they offered that service.
His “fuzzy goodness” came in handy because we couldn’t really hug or touch him because his skin was so sensitive from the chemo, I would kiss and rub my lips on his “fuzzy goodness.” His “fuzzy goodness” was our way of greeting and leaving him. I loved his fuzzy goodness! I miss that “fuzzy goodness” so much!