I’m back at the hospital tonight after three nights away. Wednesday I was taken down by a menacing headache that would not relent until yesterday afternoon. In an attempt to combat the wretched pain I went home to sleep in my own bed Wednesday night. I did everything I could think of to stop it – various medicines, heating pad, careful sleeping positions, caffeine, lots of water, cereal and milk – nothing even touched it. Thursday I had the fortune of having made an appointment with the massage therapist who provides free 20 minute neck and shoulder massages to caregivers of patients. (I keep having to remind myself that nothing here is really free – I didn’t go to the store and buy the diapers and I didn’t hand over cash to the massage therapist but at $6,500 per night room fee, nothing here is free. Yes, you read that right – we are billed $6,500 every night we’re here – crazy!!!). But I do thank the Lord for whoever deemed it a good idea to employ a massage therapist because this mighty Belgian man was able to work my muscles such that my apparently out of place rib was prompted back into place. As Thursday turned to evening I felt the pain subside. Yet once again as I slept Thursday night at the hospital and awoke on Friday, the pain was back but had shifted to the other side of my body. I have to say that fluorescent lights and beeping machines are a special form of torture.
Friday afternoon Sten and I had a scheduled appointment with the Home Care Services agency that provides all of the supplies we will need to care for Allistaire in the days that we get to be at home. They also train us how to care for her; specifically how to keep her Hickman Catheter in good working condition by flushing both lines once each day and changing the caps twice a week. We began working on learning to change her dressing that covers and protects her Hickman Catheter as well. For me everything about those 2 hours Friday afternoon was brutal. The thee obnoxiously loud ticking clocks all in one room, the crushing beams of fluorescent light and most significantly what we were learning to do. I told the nurse flat out I didn’t want to learn to change Allistaire’s dressing. Everything about it overwhelms me. It’s not really that it’s so hard it’s just the weight of the responsibility – Allistaire might not die from cancer – instead she could quite literally die from an infection in her line as I have heard of happening with several kids. I can walk and carry five bags at a time, I know how to do fancy wire wrapping in jewelry making, I can play the piano, I can draw and paint – it’s not an issue of hand-eye coordination or fine motor skills – I’ve got these. It’s the little innocent oops of a non-sterile part accidentally touching a sterile part and knowing that this could be the way an invader could enter Allistaire’s little defenseless body and take her down. I don’t want that responsibility. I doesn’t matter if I want it – it’s mine and the nurse made that clear. So Sten and I practiced several times all the specific careful little steps to do our best to minimize the risk of infection. Tomorrow we practice again and then give it a try on Allistaire. I should point out that all our practicing takes place on Chester – the torso man who has a special little hole in his chest that allows you to compress the syringe and push the liquid through and into his line – he’s a good sport really.
After our class I was off to meet up with my friend Hanna for our 3rd annual tradition of traveling to and attending our church’s women’s retreat together. I was reminded as I set out to meet her that Allistaire has made her presence quite known all three years of the women’s retreat. The first year we were at a lodge near Snoqualmie Pass and it was a lovely and very snowy weekend. To get to the lodge we had to create a narrow little path through the snow up the hill. So narrow was the path that it really only accommodated travel in one direction. At some point I was waiting on this wee path and someone needed to get by, I attempted to arch my back and make most of my body move out of the way of the oncommer. Alas, with a great pregnant belly, my balance was totally off and I nearly made a “with-child” snow angel. The second year I was pumping 5 times a day to provide Allistaire with needed breast milk and to keep up my supply. This year her silent weighty presence went with me everywhere. My raging headache continued unabated and when Saturday morning came with no relent I decided to stay in that bed until the pain went away. Thanks to Hanna’s natural sweet hearted nursing abilities, I was supplied with all I could ask for – orange juice and a tasty biscuit, cold cups of coke and most importantly – drugs. Someone at the retreat had some fabulous sinus medication that at last knocked through the cycle of pain and brought me back to myself. Though I was disappointed to have missed so much opportunity of getting to know and talking with ladies in our church which has been the best part of these retreats in previous years, I was thankful for getting out from under the oppression of that headache and for all the good quiet hours I had to talk with Hanna. I realized too, that part of me felt the need to largely avoid most everyone else. To not talk about the present reality of what’s going on in our life with Allistaire feels false and lacking authenticity, however, bringing it up over and over felt like a pity party waiting to happen and great vats of awkwardness. Though it was not what I had looked forward to, it was in the end a good weekend under the circumstances. While I was away, my sweet dad came to stay with Allistaire once again. This gave Sten some time away alone and a chance to take a good long hard run – things he needs – to be outside, to exert himself and release some stress. It was a blessing for both of us and it seemed when we returned that Dad and Allistaire had had a delightful time together. Both a nurse and the front desk Unit Coordinator commented to me what a sweet dad I have and how he clearly does so well with Allistaire. I love my Pops so much and I’m thankful for this special time he and Allistaire have had together.
Allistaire herself is doing remarkably well. Her spirit and strength seem to be making great strides forward. In the past several days she has started to squeal and shriek with delight, she actually rode the bike around and around and around the unit today and she is eating and drinking so much better. Her weight actually reached 12.5 kg on Saturday which is higher than it’s ever been since we came to this room exactly 30 days ago. It is such a joy to see her vigorous little being bursting forth. It seems these may be outward signs of the recovery that is taking place in her body. On Thursday afternoon when I got the call from the Home Care Services folks about setting up an appointment for Friday I told them that it really wasn’t an ideal time and that since we’re going to be here a while longer I asked if we could push the training back to this coming week. I was told that because we’re going home early this week that they really need to get the training in for us. When she said those words about going home I was completely confused because no one had said anything about this to me and there was absolutely no indication that the time to leave was nearing as far as I knew. After several conversations I was able to track down the source of this rumor. Apparently on Thursday Allistaire’s monocyte count rose up from zero which can be an indicator that the ANC (Absolute Neutrophil Count) is not far behind. On Friday, her monocyte count went back to zero but both yesterday and today it has begun to rise again. While her ANC still remains at zero where it has been for the last 17 days, it is likely that we may soon see it rise above zero. How long it will take to get to 200 is really unknown as some kid’s level rises steadily while for other kids their level goes up and down and up and down before it finally reaches that golden number. So we wait some more.
We still don’t really know exactly what the days ahead will look like. We don’t know when her ANC will get to 200. The bone marrow draw may be scheduled for this Thursday, 1/12, but that is still uncertain. We don’t know how long we’ll be at home but more than likely it’ll only be a few days. This means we really don’t know when she’ll start her second round of chemo. Of all the unknowns we find ourselves most awaiting the results of that all important bone marrow test. It will determine a lot about the months ahead. Please pray for us. Please keep lifting us up. Pray that the Lord will sustain us no matter what the results of this test. It is one thing to learn that your child has cancer and that you have to disrupt your whole life to focus in on doing whatever it takes to save their life, but what if all the big guns have had no effect, or not enough of an impact to bring about the destruction of those insidious cells? To me, walking day by day, closer and closer to that test feels like the scariest part so far. On the Saturday morning that we carried Allistaire down the halls and into the room where she would get her CAT scan I felt as though I had a sense of what it would feel like to walk to your death. In all those movie images of the criminal or the innocent walking to their execution, i felt my hair raise with tingling of feeling like we were possibly walking into a great suffocating blackness. What if her body was full of tumors – what if the cancer was everywhere and there was really no chance to save her? Praise God that wasn’t the case, but here we are again, putting one foot in front of the other, knowing that as the week begins and moves along, one day after another, we slowly move closer to that great unknown and possible terror. We know that test is there, looming just out of the corner of our eye, but we keep our eyes on our feet willing them to keep walking forward. Please pray for Sten and I. Pray for my mom and my dad, for my brother and sister-in-law, for Sten’s mom and dad, for his brothers and wives, for all of us whose daily lives know the joy of having Allistaire with us and the great swamping fear of sorrow that would come if she were taken from us. We need you God. I need you so bad to hold me up. Every day that goes by that I’m here with Allistaire I love her more and more, I delight in her more and more, she becomes more and more knit into me and I don’t know how it would be if she were gone. We know that though we absolutely love to see Allistaire’s singing glorious spirit, it does not tell us what is going on inside her flesh, and it only makes the pain of her possible loss so much greater.