Aria's January Spinal Tap

January 26, 2009
Subject: Aria’s January Spinal Tap

Last week Monday and Tuesday January 19 and 20, 2009 found the Layton family in the clinic. Monday was the day following our wonderful time on the mountains skiing and we went into clinic still feeling quite high about it. We were savoring the day and all the wonderful moments it brought. It was a busy clinic and the playroom was filled with familiar faces. People were in good spirits and there was brightness in the air. The flow of clinic was nice and easy.

Aria's labs were draw immediately and we contented ourselves playing with all kinds of things. We were also taking turns chasing Rianna who thought it ever so hilarious to run up and down the halls. I was grateful that the tone of the clinic was conducive for this kind of play. It isn’t always this way. There was no one that I saw in need of critical care per se. No one was walking around attached to an IV pole. The nurses were light and jovial and the sober mood I know so well was minimal.

Dr. Trobaugh wanted to examine Aria and review her lab results, which is standard protocol before any procedure. For almost an entire year, Aria had been receiving her spinal taps on Friday, which meant that we checked in first thing in the morning, had her labs drawn, waited for the results, met with Dr. Trobaugh and then she was seen for the spinal tap procedure, followed by more waiting for her vincristine, which was administered via her port usually within 30 minutes of her procedure. All in all Fridays have been exceptionally long days usually lasting 6 hours or more. Because of Aria's hospitalizations in recent months, the schedule changed. Her spinal taps are now on Tuesday mornings and so the Monday before Aria's labs are drawn and she is examined. Although this means that we have to go clinic 2 days in a row, it has been rather nice to break up the time this way. We know so many people and the environment is so familiar that it has become a sense of community and a welcomed one at that.

In the interim of waiting for Aria's lab results, I was showing the Feb/March issue of MaryJanesFarm magazine, which has a beautiful feature of yours truly and Aria. MaryJane Butters has been very generous to me this past year and this feature is such a gift. I am eternally grateful and as cool as it is to be in a magazine, I have to say that the many other articles and stories that fill these pages are every bit worth your while. The magazine is dedicated to bees and brings to our attention the plight of these necessary pollinators.

As I was showing it off to a few trusted folks, there was a woman in the playroom with her 2 boys. I have seen her only once before and both times now she has been stoic and a little blank. I know that look well and I've wondered about her. She was passing the magazine back to me when she looked at me and asked, "Do you mind?" I was amazed and replied, "Of course not!" She read the page and everything about her was silent. She looked up at me handing the magazine over when I sensed a sadness about her. I know her sorrow. Maybe I reading into it but I don't think so. She said to me, "That's so right on. You really are a good writer." It was such an overwhelming moment for me. This kind of generosity...I'm not really sure how to handle it. I thanked her. She nodded and asked how long we'd been coming. I told her a year and she smiled. "Leukemia?" I nodded and I asked about her and her son. She told me that her 8 year old son was diagnosed 8 months ago with lymphoma. She said it had been really hard and it was harder because, "My insurance through work isn't very good." I didn't get a chance to ask her any more because it was our turn to meet with Dr. Trobaugh. Instead, I thanked her again and said, "I'm sure I'll see you soon." She smiled and I left wondering about her, about insurance and how a catastrophic illness such as cancer can obliterate every aspect of a person's life.

When we had our meeting with Dr. Trobaugh it was so obvious to me that Doc and I were still riding the high of our skiing adventure. We were relishing Aria's wellness. She was just incredible and we were talking it up. I found myself saying things like, "She is as well as she was before she got sick. It has been so great to see her like this. It makes me so happy to see her doing so well. We are rejoicing to have this slice of normal slowly coming back to us." I wonder now as I'm writing this a week later if I was breathless as I was speaking. I wonder if there was a hint of desperation in my voice. I wonder if my smile mingled with a look of fear. I wonder if in between everything I was saying I was shouting simultaneously, "Don't you dare rain on this parade! Don't you even think of telling us anything bad! Don't think about killing this buzz. Don't do it! Please don't do it!" I don't want that voice to be there. I don't want to hear it screaming the same time I'm trying to enjoy the moment. I hate that voice. But there it is, nevertheless.

Dr. Trobaugh listened to our tales. She smiled and was genuinely amused. She entertained Reo and giggled at Rianna. She was thoroughly present to our moment and then like magic, the moment was over. I remember taking a deep breath and just asking Dr. Trobaugh, "So what's the word?" My attitude was definitely "let's just get this over with, shall we?" Aria's ANC had dropped to 960 and 12 days before it was 1516.

She began, "So, yeah, ok. So her ANC is dropping and I'm kinda worried about it. When she trends downward, she tends to tank. So I want to talk to you guys about maybe changing her Septra (antibiotic) because I think she might be really sensitive to it."

At this point all of her words became this weird whirling whushing sound that reminded me of an old time fan in a historic building in some nearly deserted small town. Not only that but I was aware that the lights seemed dimmer. I was processing. I thought I had understood the reason for Aria's Septra, which she takes twice a day on Saturdays and Sundays. I thought it was a preventive kind of thing so I couldn't figure out how her ANC had anything to do with it. What does the antibiotic have to do with her counts dropping and not only that but I thought the goal was to keep Aria's ANC between 500 and 1500. An ANC of 960 sounded perfect! I was gathering my thoughts when Aria chimes in, "Dada, I need to go pee!" Suddenly he was taking her but wanting to ask Dr. Trobaugh some questions. He looked a little stunned and wanted to stay focused at the same time I had questions too. We were both moving and staying put. It was a bizarre dance. Meanwhile, Aria had climbed off the exam table and headed out the door followed by Rianna.

Doc stood up with them but didn't want to leave the room. I wasn't able to move and asked that he take the girls while I ask a question and then we'd switch. He nodded and cajoled Rianna to follow him while I stayed behind to ask Dr. Trobaugh what this all meant. She explained that a side effect of the Septra is a decrease in counts. So looking at the septra in combination with the chemo that is injected into her spinal fluid every 3 months (methotrexate) which is also a chemo that she takes in pill form on Fridays as well as the monthly vincristine and the steroids she takes 5 days a month plus the daily chemo pill (6MP) simply does a number on her counts. That's what the chemo is supposed to do. It is supposed to suppress her immune system but the problem is that Aria is very sensitive to the medicine, so that in this combination it has caused her to get so suppressed that she's been hospitalized every 2 months. Dr. Trobaugh wants to see if changing the Septra can make her ANC more stable and keep her out of the hospital.

I'm still processing this while Dr. Trobaugh is explaining it to me. In the moment with her, all I understood was, "Side effect of Septra is lower counts." The rest I just wrote was what I've been processing this past week. I also asked her before I took over for Doc why she was worried about an ANC of 960 when I thought it was roughly right where we want to be. She agreed that an ANC of 960 is great but that she wants to see a stable ANC. In other words, if Aria had presented with an ANC of 1400 when just 12 days before it was 1516, then there wouldn't be any cause for concern. So a 500+ drop in her counts in roughly 2 weeks is significant because on this trajectory, in another 2 weeks Aria's ANC would be below 500 which means she becomes incredibly susceptible to whatever is out there and would more than likely wind up in the hospital. This is exactly what's been happening for months. Aria has not had a stable ANC yet. So this is why we dial up her medication and then down and why we may have to try different medications when we can.

Sigh. I got it. I understood. "Shit!" I muttered to myself as I went to the bathroom. I was so distracted. My buzz was so killed. Doc stayed and helped me with the girls. We needed something to do as we processed this. In the grand scheme of things, it is no big deal. Really. It is what it is. The bummer is that we just wanted to ride our buzz from the day before just a little longer and this news was outside the realm of Aria doing as well as we thought she was.

She is doing well, but.....She's feeling great, but.....Her energy is awesome, but...She just went skiing for heaven's sake, but...She's in remission, but.... That's the bummer. That's the stuff that blindsides and takes a minute or two to digest. It's really hard and try as I may to be accepting of whatever comes, it is so painful and so raw still. I wouldn't be honest if I didn't admit that this is the kind of thing that makes me cry. I want her to enjoy the wellness that we sense and there are these moments where that seems stripped away even if it is temporary. I have this voice that scolds me, "Yeah, yeah, yeah, stop yer bitchin' and get on with it." It is a hard thing to hear but it is also a welcomed sentiment. Although I need to acknowledge my feelings and give myself permission to feel them, this particular voice keeps me from getting stuck in an emotional whirlpool.

Doc stayed with the girls and I in the bathroom. We just looked at each other and sighed. I remember him saying something, "Oh man! I didn't see this coming at all." I was completely choked up at that point and needed an extra moment to compose myself. We returned to the examination room and Doc started asking questions. Dr. Trobaugh had already mentioned an alternative antibiotic but I didn't hear her the first time. I can't tell you the name. I have no idea. At first I heard, "Inhaled. She'll need a breathing treatment beforehand. I won't be able to be in the room with her because I'm still nursing with Rianna. Risk of breath-through pneumonia." In my head I hear, "Whoa! break through pneumonia!? What is going on here?"

I stop the conversation. "I'm sorry, Dr. Trobaugh. Forgive me Doc. What are we talking about here?" I hadn't realized there was a second part to this particular buzz kill. She smiled and I took a deep breath. She acknowledged that Aria really is doing as well as we think she is. She reassured us that this isn't something that we need to decide today. This isn't a change we need to make immediately. She said, "I just wanted to mention it. I wanted to start a dialogue about it in case it is something you guys want to explore in another month or two or never. I just want to discuss it." This is why Dr. Trobaugh is so wonderful. She reads us so well and her reassurance is warm and soothing. It really is the perfect salve. Exercising her seemingly limitless supply of patience, she began again. There is an alternative antibiotic that many kids who are allergic to Septra automatically have to take. It isn't the top line like Septra but it still does the trick. The negatives are that it is more effective when inhaled and because it has to be inhaled Aria would receive a breathing treatment beforehand. I can't remember but I think it is only once a month. The real risk is what is called break-through pneumonia, which is what people with HIV/Aids contend with. This sounded absolutely terrifying to me. I remember looking over my shoulder at Doc in disbelief.

It was here that we expressed that we understood the information, risks, advantages and the like. However Doc said, "I appreciate this information, but Dr. Trobaugh, Aria is finally feeling well. She's been back at school. We are doing great and I just don't want to change anything yet." It was here that I added, "I feel like we're just turning the corner of months of a revolving door kind of illness. We are finally all well. I understand that Aria has not had a stable ANC and I understand that the Septra may be a culprit but there have also been other factors, like illness, that we've had to deal with too. Would it be possible to monitor her counts every week for a while instead of every 2 weeks. This way we can see the trend happening that much faster and maybe nip it sooner." Dr. Trobaugh was in full agreement and I think she understood our reluctance to not want to change anything right now. In fact, I'm certain of it.

We reviewed all of her medications and the plan for the next month. With a "see you in the morning!" we were off. On our way home Doc asked me if his saying "let's not change anything right now" was too, too. I cut him off. I knew he was going to grapple with and need reassurance about the fact that he was not questioning but maybe challenging Dr. Trobaugh's recommendations as a physician himself. Doc, because he's a doctor, knows and understands so much more than the rest of us. I know he was concerned about how he was coming across to her. He didn't want to give the impression that he questioned her judgment. He doesn't. He trusts her completely. He simply didn't want to get entangled in the moment of shock and change something that really doesn't need to be changed right away. I remarked that Doc keeps a level head. "Honey, you are the grounding force. You gave the situation some pause when it would have been so easy to run on the energy of being stunned and disappointed." He was relieved. I continued, "I might also add, that you are a noble gentleman and everything you said and the manner in which you said it was gentle and respectful." I thoroughly believe Dr. Trobaugh appreciates the clarity that Doc brings to the discussion. I don't share his clarity in the moment very often. I don't understand medicine the way he does. So I hear Dr. Trobaugh say, "I'm worried and I think we need to change.." and that's it for me. I'm ready to change. I'm ready to do a.n.y.t.h.i.n.g she tells me. Doc, on the other hand, helps remind me that we can take a day to think about it. We can take an extra few minutes to think about it and be certain we understand. He reminds me that the more I understand, the less I have to fear.

We had a wonderful day when we got home. We celebrated Martin Luther King and for me I remembered writing about him last year. I had read his autobiography and was stunned by his courage and tenacity. I knew then that I would need some of his Spirit and I have kept that thought and his image close.

Before we knew it, it was Tuesday morning 7am and time to head back to clinic. When we arrived it was quiet. There were 2 mothers with their kids I had never met before. They were talking about having just been released from the inpatient unit and were discussing issues related to insurance. They were both expressing feelings of financial stress. This, on top of everything else is something I am so grateful that we don't have to contend with and yet I am so much more aware of the sickness called our health care system that is so pervasive.

We introduced ourselves and shared summaries of our stories. They were calling themselves 'the freshman class' since they are brand new to the outpatient world. I found this hilarious and appreciated so deeply their sense of humor. I found it hard to believe that we're probably considered sophmores and maybe even juniors in the process. There was a little girl, 21/2 years old, who was diagnosed with ALL a few months ago. She spent 6 weeks in the hospital! I can't imagine and yet obviously I can. She's doing really well though and she was energetic, full of life and just pure joy. The other little one was just 15 months old and was diagnosed with neuroblastoma. He has 6 tumors throughout his body and his mom said that he is doing so much better than he was just 6 weeks ago when they discovered his cancer. His journey is going to be completely unfamiliar to me. He'll have intensive chemotherapy for the next few months along with radiation and then a bone marrow transplant in the next several months. They'll have to live in Seattle for about 4 months. It just sounds grueling and brutal and sort of puts our situation in a very different place. I actually have to fight not comparing in that way because it is an emotionally conflicting thing to do. On one hand what we're dealing with compared to most people is awful and it makes me so sad and yet within the world of pediatric cancer, we're doing really, really well and I'm overwhelmed with gratitude. Comparing is a slippery slope but so easy to visit and when I find myself doing that I think about something Doc said. "Honey, it's all relative. There's Horrible, Really bad and Bad. We're doing great in the bad part of the spectrum." Isn't that perfect? Still, their situation sounds horrible in my book and I found myself thinking about 'moments'--celebrating and cherishing moments with each other. It is all we have.

They were lovely women and I look forward to running into them frequently. One of the mothers told me that because her daughter spent more than 30 days in the hospital that they automatically qualify for Medi-caid, "which is a God-send" she said. "I have no idea what we'd do without that," she added. The other mother told us that she applied for assistance but because of their income did not qualify. She said that they are only now finding out how flimsy their insurance really is. They are facing medical bills, I'm guessing, that will probably be in the hundreds of thousands of dollars. It is a frightening piece that just sickens me. I tell you, I'll be watching very closely what's happening in the world of our health care.

Aria's spinal tap went off without a hitch. Doc was with her the entire time as he has been since the beginning. I was able to stand in the waiting area, with my hand on my heart, and watch Barack Obama become our President. I was one of millions of people the world over who was in tears and thrilled about the tone of hope and change. Reo watched with me and it brought such joy to an already intense situation. When Aria was finished, which seemed like a blink of an eye, she was ready to EAT! I went to the Ronald McDonald room to make her some toast and butter. "Mom, I like the bread just kind of that light yellow color, not brown and I like the butter melted in." This order, by the way, of toast and butter gets really hard when she's on steroids. It goes something like this: "Hey, mom, you know that bread and butter? Mom, mom,mom. That bread? You know the kind I like? Well, I don't like it brown and crunchy 'cuz it hurts my teeth, but I like it yellow not all the way white. Mom, mom...you know that bread? I like it kind of that yellow color without all the seeds. You know? And the butter, I like it melted in not out but in. I sometimes like to see it but sometimes I don't...just melted and just right." I swear, when she gets into this mode, I just say a quick Hail Mary and hope for the best!

Anyway, I was in the Ronald McDonald room making her some toast and butter praying it was "right" when a woman I've seen for the last year came in. I've always wondered about her and have always wanted to meet her but the opportunity has never come up. I always thought that since I saw her so often that her son must have a wicked kind of cancer. She always appeared to me to be a 'seasoned pro' and I admired her. I finally had an opportunity to introduce myself. We were able to laugh and acknowledge how long we'd been noticing one another but had never had a chance to formally meet. I asked about her. She told me that her son had ALL and went through 3 1/2 years of treatment. 9 months later he relapsed. "When they told me that a bone marrow transplant was going to be his best option I knew it was bad," she said. I listened feeling heart –broken. "They couldn't find a match," she continued, "so we're doing another 31/2years of chemo. We only have 37 more weeks to go."

Sometimes I just want to scream, "I DON'T WANT TO BE A PART OF THE WORLD OF PEDIATRIC CANCER!" and yet, I am and I accept that I am. Maybe it's why I don't put blinders on or put my fingers in my ears and sing, "la-la-la-la-la-la" as a way of trying to block it all out. The other day I had this image of me being thrown this wicked football and I had a choice to make. Either I'd lie down and be trampled upon or I'd muscle up, charge through gritting my teeth the entire way toward the goal. I think you can guess what I've chosen to do. I don't even like football!

I can't remember what I said to her, if I said anything. I remember just wanting to look deeply into her eyes. I remember that we both sighed together once again visiting, "What are ya gonna do?" I meant it when I said, "It is so nice to finally meet you!"

When I reached the playroom with Aria's 'right' toast there were some new faces. I met a woman with her 6 year old daughter who, she told me, had ALL and finished her treatment, I think she said, a year ago, although it could have been more. I remember just being so thrilled to meet her and to see her daughter so far out from the world of treatment. This encounter was the first of its kind. They were there for their annual check-up. The mother was curious about Aria and asked where we were in our treatment and she was so encouraging and so optimistic. "You will get through it, you know. She'll be fine. But, it is so hard! Oh!" she rubbed her face and eyes as if remembering and suddenly feeling completely exhausted. She looked at me again and said, "Aren't those steroids just great fun?" We laughed and I replied, "Ah, no! Actually, I can't even joke about them yet. That part is really hard. I know it is only 5 days but the change that happens in just 5 days is so incredible." She looked at me with such warmth and compassion and said, "Oh, I know. Boy, do I ever know!" She does and it is comforting. This was the extent of our conversation but I tell you it was in such stark contrast to the one I had had only minutes before and I think depicts so clearly the range that can be experienced in just a matter of minutes.

Aria received her vincristine and we scheduled her follow up appointments for the next 3 months and then were on our way. Already it has been a week and tomorrow we return for another lab check. Aria will probably not go to school as a safety precaution. We're guessing that her counts are dropping and don't want to expose her unnecessarily, although its hard because 'she's doing so well.'

We've had a wonderful week at home. Aria handled her steroids fairly well although toward the end it's like living with a ticking time bomb and I have no idea what's going to set her off. Her energy was considerably lower but her spirit was high and she was playful and bright.

I'm not really hoping for stable counts tomorrow. They're going to be what they are and I'll have to accept the results and deal with them. My thoughts this evening as I write are instead of grace. I desire the grace to accept whatever comes, to ride the swells with peace, trust and balance, to recognize the suffering in others, to share what I can of myself, and to earn a welcomed view into the lives of the extraordinary people I meet. It is grace I seek. ~j