The Overflow of Horror

    I just finished trying to have a nap and I gave up because I feel like my mind and heart are overflowing with horror. The horrors of the last 7 months are catching up to me and I feel like I am now over capacity. The most sickening part of this, is that it is all the awful things that my child has suffered and not me myself. She has had to endure and feel every experience, while I have merely watched and tried to offer what comfort I could. I feel ashamed that I cannot cope better and ashamed that I am so overwhelmed at what she has gone through and I have not had to experience it in my own body.

    I think I need a list of horror. Just to catalogue it and maybe be able to give it up at last. So....

The horror of watching a Bone Marrow Biopsy on my child who is so sick that she can't be given any pain medication. Of watching her face in agony, her clinging to my hands and sobbing in pain. Her poor little face so pinched, with a black eye and the whites of her eyes all bloodshot from the force of her vomiting blood the night before.  Her leukemia is acute and rare.

    Watching the ICU team come rushing in the hospital room with their backpacks on, placing a mask on my girl who is struggling for oxygen and crying that she can't breathe as a kind nurse stands with her arm wrapped around me for support. Of wandering the hallways, unable to find the doorway they showed me as they rushed her in, telling me I would be able to see her in 3 hours. Wandering the hallways and finally someone showing me where to go. Having to use a phone to ask if I could enter the ICU to see her.

    Walking in to the room and seeing her intubated, unconscious with all the monitors you see and hear on a tv show actually monitoring my daughter. At the time I was upheld, now that I am remembering, I want to vomit. A few hours later, trying to prepare my husband and other kids as to what they had to do to see her - washing a specific way, gowns, gloves. They had flown in that night as the doctor had told us she had a 50/50 chance to make it.  Stroking her hair and unable to touch her skin as she was cytotoxic and the chemicals coming out of her skin were unsafe for us.

    The horror of her passing out on the toilet in my arms, her face grey and the nurses rushing in to help us. The loss of dignity for her and her painful weakness and violent vomiting as we got her to her bed. A few weeks later, the horror of clumps of hair coming out and taking her to get her head shaved. Watching her despair as the depths of this journey began to sink in and the ugly feeling of a bald head.

More agony as she faced another bone marrow biopsy, this time coupled with a spinal tap that left her with a blinding headache for days afterward. That headache was so bad that she had to lay with her head in my lap for the short airplane flight home.

    More horror as the leukemia showed up again and having to watch her be told that she must undergo a much harsher round of chemotherapy to hopefully put her into remission. Weeks of being so ill that she literally begged to die. A Christmas away from others, watching her suffer. The horror of counting out pills day after day, feeling like a cruel taskmaster as I had to help her take them. Forcing her back to the doctor for more appointments, asking the necessary questions that would bring her more suffering.

Going to a horrible gynecologist who was cruel in his sheer indifference and attitude when telling her she is rendered infertile because of her chemotherapy and then the indignity and pain of an ultrasound that we weren't prepared for. She cried all the way down the highway to the centre for the bone marrow biopsy. Such a callous, cruel situation and also, situated in a fertility clinic. Really? Horror.

    More chemotherapy, this time even stronger as they had to wipe out her own bone marrow (which was producing the leukemic blasts) to be replaced with her brother's stem cells. Radiation too, that made her more sick and I was there for it all, placing her on the table, helping the nurses all I could, making her sicker. This time the chemo left her with mucositis, open sores all the way from her mouth thru her intestines to her bottom.  Seeing her vomit up a feeding tube and the horror of not seeing what it was at first. Having to clean her when her bowels made a mess, having to help her out of bed and making her walk around the unit because she needed to move to gain strength. Holding her up and bodily carrying her to her bed when she passed out. Seeing her unconscious and wondering if she would look like that if she died. Horrible thoughts.

    Bringing her home, looking like a ghost and worrying for fear something would happen and I couldn't help her like the nurses. Facing her tears when she returned from a gastrointestinal scope that they didn't give her enough sedation for and she was in agony, feeling where they had biopsied her stomach and colon. Having to give her big doses of prednisone to keep her body from attacking itself and watching her suffer all the horrible side effects.

    And now this. This, being a call out of the blue from the clinic. Telling us that she would need a breast ultrasound as they had been watching a lump that needed checking. Really? Waiting for the next call, to tell us when the appt would be, agonizing over the unknown. Finally, the ultrasound. Now we're done, right? Nope, we need to biopsy this lump, we are concerned. Not to worry, breast cancer is extremely rare for your age. Little do they know, so is her kind of leukemia.  Before this breast biopsy, the horror of another bone marrow biopsy. Watching them drill into my child's hip bone, suck out bone marrow with some force and take a piece of the bone also. Tears pouring down her face, her whispers of a fear of being thought wimpy. Oh my sweet girl, never that. You are so precious. I tell her that, but still I feel so much guilt for feeling so overwhelmed with horror and I am not the one lying there in such drastic pain.

    This morning we got a call. They had time right away, can you come and get the breast biopsy done? I feel so cruel, saying yes and then I got her up. I had to tell her, to get her ready, and drive her to the clinic. Usually we walk, but because of her bone marrow biopsy, the pain was too much. They were so kind, but it was a horror just the same. To escort my beautiful, shining bald daughter in to a small room to have her breast pierced and six samples snipped out from deep inside. She is home now and sleeping, but very shaken up and in pain. Feeling violated and shedding tears. We must wait a week.

   Horror. I can't think of any other word. My soul feels simply overwhelmed, and it's not me, it's all happened to her. God have mercy.

Just thinking.