September 26

I am home, sweet home. Yesterday my white blood cell count was over 5,000, and since all of my blood work is looking good, and I am not having too many side effects, they are letting me stay at home and go back each day for labs and monitoring. It is one of the many perks of being local. I am still technically an in-patient and am just out on pass when I’m at home, because I will have to go back to stay if anything does happen. So I still have my room, which makes it really convenient when I go back in for labs each day – I just go back to my same room and tell the nurses I am there. They let me go , so last yesterday afternoon, so last night was my first sleep in my own bed in what seems like a really long time. Yesterday and Saturday, I had a completely debilitating headache, unlike anything I’ve ever experienced, but it is better today and now I am mainly just very, very tired. I haven’t yet gotten the high fever that they are still expecting, but who knows, maybe I won’t get it. They said it usually happens between day 8 and day 14 after receiving the new cells. This coming Thursday will be day 14, we shall see what happens. The fatigue is overwhelming; there’s not a lot I can do other than lay on the couch or the floor (or, of course, the bed, but I’m trying to at least stay downstairs where I can see Kai, even if I can’t take care of him or play with him as usual).  I am so thankful for our parents who have been doing just about everything for us as we get through this treatment. Jeff’s parents left on Saturday, and my mom and step-dad took over. Thank goodness for parents; I can’t imagine how we would ever be able to do this without them. While I’m not a mind reader, and as perfect as he is Kai does not yet wax philosophical, but I have to believe that allowing Kai to stick to his normal routine, at home, with his grandparents is making a world of difference for him during all of this chaos. And for that, I am thankful.

So that is my update. Nothing too exciting is happening right now. We will be going back and forth to the Clinical Center every day until my doctors are confident that I am stable. And if I experience any additional side effects, I will have to go back to stay until they pass. But for now, I am happily exhausted at home with my family, confident that my new super cells are flying around killing tumors, while the rest of my body recovers from the harshness of this treatment (that is not a criticism, it is just a fact, I am thankful for the extremes my doctors are going to to cure me and I am thankful to my body for taking it all like a champ). As I said previously, it is difficult for me to be still and rest, so I guess I am grateful that my body isn’t giving me much of a choice right now, even though my mind would like it to hurry up and recover. Although I guess that’s always the case – the mind would always like to move more quickly than possible. And patience is one of the most important lessons I am learning on this journey.

Tonight I put baby Kai to bed for the first time in weeks. He was asleep in my arms before he even finished his bottle, with his sweet little body all warm and cuddly against me. I continued to hold and rock him for longer than I should, but sleep books be damned, I miss my baby. We rocked in silence, at the end of his song, with his head resting gently on my shoulder, his arms wrapped tightly around my neck, and my arms clinging just as tightly to his warm little body. These days my tears flow more freely, but tonight as they fell they did not fall from sadness or worry or fear. They feel from an overwhelming sense of relief and gratitude that we are through the worst of this treatment, and that I am once again given the privilege of holding my baby close as he drifts off to sleep, secure in knowing that I will be here for him when he awakes. With his little chest pressed against mine, our hearts beat together to the rhythm of unconditional love, and our breath flowed in and out in perfect synchronicity as I inhaled his innocent perfection to expedite my cure.  And for that, I am thankful.

Today I am thankful for rocking chairs everywhere; I am thankful for my continued care by my fabulous doctors and nurses; I am thankful for the constant cards, e-mails, phone calls, and text messages from all of the amazing people who continue to support us; I am thankful for our wonderful MMG family and the bi-weekly, much-need and much-appreciated dinners they provide; I am thankful for my mom and Bill who have taken over our and baby Kai’s daily care; I am thankful for all of our amazing friends and family; and, as always, I am thankful for my sweet sweet Jeff whose natural loving actions remind me every second that we are true partners in this journey, and our perfect baby Kai. Every hour of pain is worth just one second of your embrace. I would gladly endure these treatments a hundred times over, for the privilege of one extra minute with you in my arms.