Here are his counts as of last Monday, which is BMT +147 and boost +91:
White Blood Count: 6.6
Absolute Neutrophil Count: 3.9
Red Blood Count: 3.19
Hemoglobin: 10.9
Platelets: 314
So all of his counts are at a healthy level except for his red count and hemoglobin, but it's slowly getting there. The past month has been pretty quiet. Both kids have been fighting a small string of colds and, thankfully, Nathan seems to be able to handle these minor illnesses remarkably well. He did receive an IVIG transfusion this week just to boost his system a little bit as hisown IGG level, while normal, was still on the low end of normal. Unfortunately, Nathan's kidneys continue to be stressed and, despite his high rate of 24 hour fluids and his abundant oral intake, his creatinine has been steadily increasing and was 0.81 this past Monday. Dr. Margolis is not terribly concerned which is reassuring but I really do not like to see this number going up especially since his immunosuppressive medication (the one that is causing his kidneys so much stress) will not begin to be weaned for at least a month still, possibly several months. I have hope that this is much like his prior liver inflammation, stressed out organs that are otherwise strong and able to withstand the inflammation... I hope. Suffice it to say that he will continue to have his picc line (peripheral central line in his arm) and Jay and I will be playing nurse for a good long time still. I wish this were not the case but it is what it is and, just like I told myself many many moths ago, I need to continue to be patient and know that all will be well even if it's not on my plan or timeline. And again, if I just look at Nathan I can see that he is doing great. He has such energy and joy and is back to his old playful and silly ways. It's amazing to see Nathan truly being himself again... even if he has a line of fluids and a backpack on his back at all times.
On an emotional level, I am finding myself mourning our former lives much more deeply this past few weeks. The knowledge that, no matter how hard I try, life just isn't and won't be the same ever again. And while I intuitively know that is perfectly alright, it also is a sobering realization and some days this reality hits me to the core. I may have been there every moment but I am simply in awe of it all, it's incredible and amazing and inspiring and heartbreaking all at the same time. I think this mourning, this processing, it's all normal and we need to embrace it and allow it to happen even if it hurts. Somedays I am overwhelmed with joyful tears, and other days its sadness and stress, then there are the days when it's all mixed up in happy/sad ugly cry. But I have somehow never felt anger, I think I am too aware of our blessings and thankful to be where we are to dwell on those destructive thoughts, but still I even have moments when I wonder why I'm not at least a little angry as insane as that may sound. These emotions seem to come in waves and I need to essentially ride those waves as they come. It's that proverbial peeling of an onion, layer by layer and exposing something different each time. I think it may take nearly a lifetime to truly process the totality of this experience and be able to revisit it without tears and overwhelm.
I have found this experience to be the most intense and constant form of meditation that I could ever imagine. Always keeping a clear head, managing my thought streams every moment of every day; reframing, refocusing, training my mind... It's exhausting but truly the most valuable discipline that I have learned. A friend of mine used to always say that "you can't ride the roller coaster" meaning if I revel too much in the ups then I will be equally saddened by the downs, and that insight has never been more true than over the past eight months. Keeping a level head among such extreme ups and down, among the chaos of a life turned completely upside down, has been an intense practice but such a worthwhile one at the same time. And with this newfound sense of clarity, I began to realize that there are many blessings even in our darkest moments and I would hold onto those blessings for dear life. In our most difficult moments, I would take a breath and look at Nathan, really look at him. Get out of my head, resist the urge to live in denial or escapism or even over dramatization, and live in that moment. To trust his innate strength and in the lessons that we are meant to learn on this path. I cannot predict the future, but I can always remind myself to open my eyes and ears and to really trust the journey. We can make up a whole life in our heads but nothing outside that particular moment is truly relevant. Inhale exhale and let it all go.
Then there is that strength that people often talk of. "You are so strong!" Is a phrase that I hear most every day from well meaning friends, family and even near strangers. It is a great compliment and sometimes this strength feels like a calling, but other times it feels like a burden. Knowing I can go through what every parent would list as one of their worst fears and do it gracefully, while keeping Nathan in great spirits, without breaking down completely... it's so damn empowering but also a monumental challenge. And I am quite certain that every single person who says those words would rise to the occasion in the same way. That's the strength of being a parent, of being a mother, you don't know you have it in you until you desperately need it. But I still brush it off because it just is what it is and I was literally surrounded by strength the whole time. Jay was there every step of the way doing what I thought was the harder job... taking care of Camryn, shuffling between home and the Ronald McDonald House, working full time, making sure we had food to eat and essentially keeping it all together. That man is a saint and I can never wrap my arms around what he was able to do which enabled me to focus so completely on Nathan. And of course we had help, amazing friends and family who filled in all the gaps and made sure we could last the grueling marathon that was our lives. Nurses and doctors who held us together and helped to bring our little boy back. But truly, my strength, Jay's strength, doesn't even come close to Camryn's strength in confronting her biggest fears for love of her brother and a strong desire to help him. And our strength pales in comparison to Nathan's strength in handling everything that he has been faced with and doing it with a smile. To put it simply, we had to be strong because we had these two examples of profound superhuman strength looking right at us and what can we do but empower, encourage and sustain them through it all. Their strength is what is amazing to me, we were just along for the ride.
