Aria's new treatment

July 3, 2008

Subject: Aria’s new treatment

I've lost my momentum for writing for the past few weeks. We've had company distracting me in the best possible ways and Aria has been feeling so well that we've been playing constantly. I haven't made time to sit and write as a result. My thoughts have been light and fleeting a lot of the time and that has been a wonderful little reprieve from the heaviness that has been a constant companion these past months. I really can't stress enough that 'no news is good news.' I also want to thank you for writing to me, writing to the kids and reminding me that we are never far from your thoughts...It means so very much especially now when we are burned out, sometimes trudging along, knowing more stable ground is within reach but with plenty of uncertainty yet to face.

On Friday, June 20, 2008, we went to clinic to check Aria's counts, which would determine whether or not she could be admitted to the hospital to begin the second half of Delayed Intensification. As you may recall, her counts were not high enough earlier in the week to proceed so we were in a waiting pattern. I've described this time in her treatment as feeling like I'm facing the summit of a climb I've been traversing for the past 5 months. The anticipation to push on and get to the top is great. We've been held back, however, by the weather of this process. Friday, we were eager, oh so eager, to just get it over with!

It was as if time stood still in clinic this day. Aria's blood was not going to be given easily through her port for some reason. It just wouldn't flow regardless of the coaxing that was attempted. The nurses thought they had been able to extract just enough for the lab sample but we discovered that it had clotted in the time it took to be transported to the lab. She would have to get a finger poke instead. Aria was a trooper throughout it all. Her ANC was 2100, which was more than enough to begin the next phase. I'll add that it is remarkable how quickly the body can restore itself. Just 4 days prior her ANC was slightly above 500. Aria was swept away to a procedure room where she had a spinal tap. Methotrexate, a
chemotherapy drug, was put into her spinal fluid as it is every time she receives a spinal tap. She was then admitted to the hospital where she received 3 new chemotherapy medications. One was given as a 'one time only' treatment. Another one was one she will have to take for 4 days in a row: dose #1 on Friday, #2 on Saturday while still an inpatient and then we'd return to clinic on Sunday and Monday for doses #3 and 4. She will take another 4 day course of this drug beginning on Friday June 27th as well. The last new drug is one she takes every day for the next 14 days. Aria was given a huge bolus of 'don't fro-up' medicine beforehand because these drugs can cause terrible nausea and vomiting. We were told to prepare ourselves that she might feel pretty sick over the next few days.

Aria tolerated all of her new medicines very well. She thoroughly enjoyed being in the hospital watching movies and visiting with nurses who are fast becoming old friends. Doc spent the night with her, while Reo, Rianna and I went home fairly early in the evening.

It is worth mentioning here that I thought the only reason for her needing to be admitted for this next phase of treatment was to make sure she didn't have some kind of strange allergic reaction to the new medicine. I discovered later, that that is only partly true. Dr. Trobaugh was able to come to our room in the afternoon and explain to me in detail the finer points of this treatment plan. Indeed, they want to monitor Aria closely while her body processes these new chemicals, but the main reason for her admission is to give her plenty of fluids. She was hooked up to an IV shortly after being admitted because she was dehydrated. I was aghast and felt like a rotten mother for not giving her enough fluids, but then Doc reminded me that Aria had a procedure at 1pm, which meant that she couldn't eat anything and could only drink water or a little apple juice. Aria hadn't taken in any food since dinner around 7pm the day before and she didn't have anything to drink except for what she drank with her medicine earlier in the morning. She knew she was having a big clinic day and just didn't want to have anything to drink. No wonder she was dehydrated! Poor thing was so starving by the time her procedure was over with!

I learned that the purpose of the additional fluids is to help the body flush out the drugs as they are broken down throughout her body. I was told that one of the drugs in particular gets caught up in the bladder, binding in a way that can make it bleed. Sounds horribly unpleasant so they keep the bladder nice and full so that Aria can pee constantly keeping those nasty by-products flushed away. Doc said that she was up going potty every 2 hours throughout the night! Other than that, however, she did very well.

We made it back to hospital the following morning around 9am. Time is the most extraordinary thing in this experience and I wish I wasn't so drawn to it. I had it in my mind that we would be able to leave the hospital "sometime" in the morning. Aria was doing so well that things had a 'routine' feel, which added to my growing expectation that we wouldn't need to hang around for very long. I had convinced myself that we'd probably be able to leave sometime around 10 or 11 at the very latest. We waited and waited and waited. The nurses needed direct orders from the doctor on call, who hadn't visited our room. When she did, sometime near 10:30, we were told that Aria would not be able to leave until she drank at least 4 ounces and kept it down since she'd been feeling sick and even threw-up a little.
This was a bit of a blow and so we tossed our expectations of leaving ‘any time soon' right out the window and settled in.

You know, it is no big deal to sit and wait. It really isn't. Yet, why is it? This kind of waiting is so reminiscent of airport waiting. There's plenty to do and look at and at the same time, I can't escape the feeling of just wanting to get on the stupid plane and get going. Delays, even for 30 minutes or less seem like an eternity. Lay-overs lasting hours are draining unique only to airport waiting. With little kids in tow, the luxury of disappearing into a good book or escaping into a magazine just aren't possible, so I'm left to my own devices, which slowly vanish with every minute that passes. Hospital waiting is exactly the same thing. It's no big deal that we had to hang around and watch hours of ridiculous cartoons. Yet, I could feel my energy slipping into the abyss of the waiting cosmos that numbs my senses. Finally though, Aria was given her chemo and drank some apple juice and over the course of the next few hours started feeling much better. We were able to leave the hospital around 2 pm. Time dragged along like a wet towel leaving behind marks of frustration, agitation and fatigued. We were all much sunnier and lighter by the time we gotbhome.

I am sitting here Saturday morning June 28, 2008 and it is hard to believe that a week has already flown by. We were told to expect Aria to feel really lousy. Her counts were going to begin dropping, which meant that her energy level was going to decline. Her appetite was expected to tank, fever alert was high and we were told that nausea and vomiting were common. Basically, I was preparing for the bottom to fall out. It never happened. You can imagine my relief. Saturday night my sister, Sue, arrived. We all went to clinic together Sunday morning for Aria's third chemo treatment. Sue was able to experience first hand what living in a hospital room as a family of 5 feels like even if only for an hour. The entire process went very smoothly and Aria continued to tolerate the new chemo without a hitch. She was energetic, and cheerful although her appetite was noticeably decreasing. She was thrilled to have her Auntie Susie with her. It was actually a nice day. Our pool was ready for swimming so we made certain that Aria's port was 'de-accessed' so she could play in the water. Normally, her port would remain accessed, making it easier to administer the 4 day course of chemo, however the healing power of being able to be a kid and play and swim is far greater than the practicality of keeping her port readily accessible.

Monday morning Sue, the kids and I piled into the car and headed to the clinic again for her final bit of chemo. I noticed, while sitting with her waiting for her port to be accessed, that I was feeling anxious. It was as if I was trying to anticipate any sudden change in her. "Am I ready to leap off this chair and race to the bathroom like I did so many times before?" I sat and wondered, "Is she feeling warm? Nope, she feels fine. Are you sure she doesn't feel warm? Check again." These were some of the mutterings playing themselves like a broken record. I kept having this image of walking along a series of trap doors very gingerly and quietly as if any minute one of them was going to suddenly spring open swallowing me into darkness. I sat there in the 'jelly-bean' room holding Aria breathing in and out deliberately calming my mind. The access of her port, the chemo injection and the de-accessing took all than 10 minutes. By the time we left the exam room, I was completely calm. Aria was thrilled to be done with this series of chemo and expressed more than once that she was free! We raced home to play in the swimming pool.

Aria's energy was remarkable. Swimming has proven a marvelous form of exercise for her. She wears a life-jacket still because although she can tippy-toe touch the bottom of the pool for the first time this year, she doesn't have the strength to navigate the water with any degree of confidence. She tried swimming with me without her life jacket and was insecure, finding refuge on the stairs. She was limited and after some gentle coaxing, she tried her life jacket and was instantly free to swim all over the pool. She was positively delighted. She and Reo spent hours, literally hours, in the pool swimming. It was wonderful. Although it is nearly impossible for me to forget, even for a moment, that she has cancer, I reveled in the power of play, the power of innocence, the power of childhood, the power of the moment and the profound power of her laughter. I spent a few glorious days basking in the glow of her joy, which left my spirit peaceful and light.

By Wednesday, Aria was beginning to change. Her energy was waning. She was becoming hyper-sensitive. "Don't look at me, Mama!" "Don't say that to me!" "I don't want to play that way!" Funny little moments would set her off into a fit of pouty faces and tears. It might be tempting to pass this off as typical 4 year old behavior and some of it I'm sure is, but we've had enough experience now to know that this is something else, something more. Her appetite was suppressed and her desire to drink even more so. I find this challenging. How can I convince a 4 year old that she needs to be drinking something to remain hydrated so that she doesn't get sick when she doesn't feel the least bit thirsty? It is one more nagging thing she has to contend with. "Aria, honey. You have to keep drinking. I'm sorry you don't feel thirsty. Won't you please have 2 sips of this juice?" Again and again my voice rings in her little ears. It is important, to my mind, to remain as gentle as possible so that voice doesn't become some kind of noxious gong. I doubt it is any kind of song bird or sweet chime but hopefully somewhere in between sweet and sour. Aria didn't show any signs of nausea or vomiting, for which I am so grateful. That aspect of chemotherapy is by far the most stressful. It is the urgency, the helplessness, the suffering, the discomfort and the unavoidable 'gross-factor' that make it so hard. I am thankful that we haven’t had to deal with that. We’ve had our fill of it!

My other sister, Linda, arrived Thursday afternoon (June 26, 2008). Aria was in good spirits and was able to play and swim. Linda commented that she had expected a lot worse and was relieved when she saw Aria. Sue's perspective was a little different because she had seen Aria 5 days before and the change in her from then until now was distinct. Sue was worried. Linda was just beginning to take it all in. They were able to take the kids for hours and hours and hours.
The played with them, swam with them, watched them in the sand pile, played games, read stories, changed diapers, gave baths, prepared snacks and so forth. I was able to detach and make dinners, and do things from start to finish, which is something I haven't been able to do for months. It was a wonderful feeling. I was able to talk on the phone without being interrupted. I took showers by myself. I wrote a few letters and did some writing. It was relaxing and rejuvenating having them here knowing that they were thoroughly enjoying their nieces and nephew. They were creating memories with them. It was lovely.

Friday (June 27, 2008) rolled around all too quickly and we were heading to clinic again for lab work, an examination and more chemo. Aria was going to begin round 2 of the 4 day course of chemo. Everyone was completely impressed by how well she was doing and didn't hesitate to say so. My reaction to this was stunning. On the one hand, I was relieved and happy to hear that from their perspective my sweet girl was doing exceptionally well. On the other hand, I simply could not resist wanting to hear, "Aria's going to be just fine. She's doing so well now that there is no doubt that she will be cured and live a perfectly healthy long full life." I know this is absolutely absurd. There are no promises. There are no guarantees. I know this. I know this. I know this. I still can't help feel the need to be reassured in this way. It was a gentle reminder that I have work still to do in the areas of attachment regarding fear and trust.

The clinic was exceptionally busy. It was somber but children always bring an element of festivity so there was also lightness to the mood. My sister Sue had never experienced anything like it before and her eyes were wide, taking it all in, processing everything she saw and heard. I could only imagine what she must have been feeling. Watching her reminded me of our first visit to the oncology clinic and my contradictory senses telling me that I was falling and floating at the same time my feet were firmly planted on the ground. She was so gracious and helpful to me. She chased Rianna everywhere and entertained her so I could chat with other mothers and professionals who came to see how we were fairing. Linda, who has a lot more clinical experience wanted to understand the process. She accompanied Doc and Aria for everything; weight/height measurement, vitals, port access, blood draw, chemo and de-accessing her port. Both Sue and Linda came into the exam room with us while we met with Dr. Trobaugh's partner, Dr. Judy. Aria's ANC had dropped to 830, which is a significant decrease but not yet at the critical stage. It was nice to be reminded that her counts, although sinking, do not determine whether or not we can continue with treatment. Dr. Judy thought Aria was doing exceptionally well and said so more than once. She, however, said that it was time for Aria to receive her first blood transfusion. My heart sank to my stomach.

A blood transfusion? We made it this far without needing one and now we have to go ahead? Really? Ok, this is where "performance Julia" started to show herself. In the deep recesses of my twisted mind I had a moment when I actually sensed a feeling of failure. The fact that Aria had dodged that hurdle for this long and it looked like we might skate past it altogether was a real feather in my bonnet. It was a badge of "isn't she doing so well, she hasn't even had a blood
transfusion, yet." As I sit here and spill that aspect of myself for a complete and thorough cleansing, I'm disgusted by the muck I see. That badge was ripped from my puffed out pride-filled chest and replaced with a decorative shining medal reading, "doofus!" As if Aria needing a blood transfusion had anything to do with me at all and yet in my immaturity, I made it about myself. Fortunately, the thought didn't linger and I was able to let it go and allow whatever needed to happen soak in. I found myself actually needing to put the idea of a blood transfusion out of my head altogether. The idea of failure was gone but there in its place was 'severity' and I was forlorn. Aria is doing well and at the same time she isn't and that's difficult to reconcile. Blood transfusions are normal in this process but at the same time in the realm of what I used to know as being normal, it is anything but normal. It is tempting to say something dismissive like, 'What is normal anyway? or normal is all relative." Both sentiments are good ones and I have found myself saying them repeatedly but I've noticed, however, that they don't address my feelings. Instead it's a lot like shooing a persistent
yellow jacket buzzing around my head. My hand will gently attempt to swat it away but it is tenacious and continues coming back. My gentle air-swipes are ineffective in persuading it and so I fully awaken to its presence. It is here that I have to recognize that an annoying bee is hanging around me and I can either kill it with my shoe or get up and leave. This is what I'm discovering is most helpful when emotions and situations unexpectedly present themselves. I notice that sometimes I can gently swat them aside, but they always come back so it better to take time to examine my emotions and my feelings when they come up so that I can take care of them once and for all.

While Aria was being evaluated,I was tense and a little sad. Aria needed to have a blood transfusion. "I accept that." I tell myself. Aria's feet had blisters developing on the bottom of her toes as a result of the chemotherapy. We'll have to watch carefully and make sure they don't get infected. "I'm equal to the task." I hear myself say with confidence. I'm breathing deeply and rocking side to side as I hold Rianna. I'm stressed and conflicted. Aria is doing so well. She has avoided most of the major issues associated with this phase. Why am I so anxious? I glance over at Sue and Linda sitting absolutely still and completely quiet on a nearby couch. They're holding hands, staring at Aria, taking it all in. They personify what I'm feeling. They're holding on trying to make sense of a process that is monumental. I found their presence extremely comforting and affirming. Aria is doing well. It is true. This truth, however, doesn't lessen the task at hand. Knowing that she is doing well gives me more breathing room, more time to sit and rest and enjoy but onward and upward and forward we must still go.

Aria's blood was going to have to be ordered and the transfusion was scheduled for a few hours later. We decided to go home for some lunch and a little break. It didn't seem to make sense to have us all stick around only to hang out in a hospital room for 3 hours while the blood was slowly infused into her body. We decided that Doc and Aria would return to the hospital when we got the call that her blood was ready and the rest of us would stay at home and play. The drive home was quiet. I can't emphasize enough how odd it is emotionally to know one thing, “Aria is doing great at this stage of treatment” and feel something different (it is heart-wrenchingly sad to watch her endure day after day what she must). It was here that Sue could no longer hold her tears and as they spilled forth she shook her head in disbelief unable to suppress her sorrow over the suffering she saw.

My initial reaction was to remind her that Aria isn't suffering but I silenced myself. This was Sue's first real clinical experience with Aria as well as seeing several other children and their families. One can't help but look and stare and wonder at what fate has dealt these people. As I drove home, I thought about the word "suffering" and what it implies. When I think about suffering, I hear moaning. I see blood. I see life battered and bruised. I imagine horror and mayhem. Aria's clinic experiences are not the pandemonium conjured in my mind when I think of that kind of suffering, but there is suffering. Families are changed forever, some cope better than others. Children endure pain and discomfort that they get used to and become masterful at predicting their own care. Play-time is guarded and selective as it defines their childhood experience. Living with tangible uncertainty is a constant presence. Morpheus from the movie "The Matrix" says it perfectly, "...like a splinter in your mind...." It takes some time but eventually the psyche accepts, "it is what it is." I moved on from the notion of suffering because Aria must do what she must in order to live and my job is to minimize her suffering as best as I can. For me, one of the best ways to accomplish this is to understand myself as I share this experience with her. It is my belief that the strength of Spirit dwelling within me is getting stronger as I know and accept myself. Aria's spirit and mine are connected. They are one.

Aria left for her blood transfusion a few hours later. Everything was just fine and the entire process took about 4 hours from start to finish. By the time she got home her cheeks were rosy but she was exhausted so we tucked her into bed. By Saturday we launched into what would be a spectacular weekend. Aria's energy was tremendous. That blood transfusion was like a quadruple latte to her little body. She was chatty and imaginative rearing to go. Watching her reminded me that fear of the unknown often creates such negative emotions that have so little to do with reality. I'm sure it is a defense mechanism of sorts because when I imagine trying to be positive about something that frightens me I hear something like this,
"Hey, Aria needs a blood transfusion? Wow! That's great. I don't know anything about it and I'm scared to pieces, but gee, I bet everything's going be just dandy! I can't wait to face yet another unknown!"
I sound demented and if I don't seem like I'm fully bonkers, then at the very least I sound not only unconvincing but insincere. The trick for me is not to dwell in that place that is negative and then invite its friends to stick around. Rather, I have to sit in that dark spot for a period of time, understand it, and find some kind of comfortable position so that the light of my usually joyful spirit can once again take up residence.

Linda flew home on Sunday and Sue followed suit Monday morning. The memories they made with my kids are without a doubt the most important thing they could 'do' for me. All the busy work that needs to get done on a daily basis does, in fact, get done with or without extra hands. Those tasks still offer me a great deal of satisfaction and sense of accomplishment, but seeing my children full of joy, creative spirit and freedom is priceless to me. I'll never be able to fully articulate my gratitude to my 2 beautiful sisters. Having them here was powerful and healing.

Aria finished her 4th and final round of the 4 day course of chemo on Monday July 1, 2008. She remains is a wonderful place. I don't know what her counts are and I expect that they are continuing to go down. I'll find out today, Thursday, July 3, 2008 what her numbers are. The thing about her counts going down is the increased risk of infection. But, we now know this process. Aria can get a funky fever completely out of the blue and we head to the ER where she more than likely gets admitted for a few days with high octane antibiotics and we go from there. The mystery and scare are gone with that process now. It is my understanding that when she finishes all of her chemo in this phase of treatment, that we'll have a week off or so and her counts will continue to decrease for a day or 2 and then they'll start to recover. They'll need to reach a specific level in order to head into the last phase of treatment called "Maintenance." The recovery time of her counts is dependent upon whether or not she incurs a bacteria or virus. We'll see.

We are so near the end of a heavy phase of treatment and Aria, my warrior, remains standing tall and firm. She is confident and dazzling. She is flowing like the gentle stream upon which we now ride. It occurs to me now that I am quickly approaching the summit of this phase and there waiting for me is Aria. I've just in this moment realized that she is ahead of me on this journey. She is carving the path whose foundation has already been well manicured by the thousands of kids and families traveling before her. Still, she has her own path and I am following closely behind. As I sit here typing, I can see her so clearly in my mind's eye standing on the peak of a brilliant mound. She's holding a wooden staff that is slightly taller than her. She's smiling and inviting me to join her as she waves her staff toward the direction of the sun. The light is yellow and orange and our path is a swirl of color but very clearly defined. I'm pausing for a moment to look behind me. The darkness of the cave where I was for a long time is behind me and it isn't following. The darkness of these months has receded and remains exactly as it was but I'm no longer there. I've moved on. What I see ahead of me isn't hope. What I see is a wish and a promise. I'll be joining Aria very soon on this mound and when I reach her I will embrace her with every fiber of my being. I will raise her above me in awe and send my blessings out. You, too, will reach this mound but we won't be here. We will have moved on toward that wish and promise. ~j