Maintenance Begins!

It is August 24, 2009 and I have just re-read this email. Oh my God! What I knew then versus what I know now! I remember this day like it was yesterday. I can see the hallway where I had a wonderful conversation with Dr. Trobaugh as if it was as familiar as a hallway in my home. I can smell the clinic as I type this. I can hear the sounds of the hospital ringing in my ears despite the fact that I am home surrounded by the gentle subtle noises of my farm. We really do have a second home, a second family and it functions with precision, compassion, intelligence, wisdom, color, chaos, sorrow and joy. Truly, it is a unique experience.

I remember thinking a year ago that Maintenance was going to be a much easier trip. In many ways, it is and in other ways it isn’t. I think it was important for me to consider this phase as something light and breezy because what we had been experiencing for months had been so dark and almost suffocating.

Maintenance has been lighter and easier but it has been long and tedious. We still have more than half a year to go as I write this with a year already under our belts. The ride may not be as tumultuous but it is nevertheless still a ride and it has been treacherous at times.

Regardless, the perspective I had a year ago is worth highlighting and revisiting. It documents how I’ve grown, what I’ve learned and most importantly, how far Aria has come. (8/09)


August 1, 2008
Subject: Maintenance begins!
Aria's counts were high enough to begin maintenance today. What a success! Yesterday, her ANC was 650 and today 24 hours later it was 1024. We were thrilled! I have to say that as I'm writing this, I am completely drained. What an emotional ride today was; waiting, wondering, waiting, wondering, meeting new families who were also waiting and wondering. After a little more than an hour in the clinic we got the 'go ahead' good news but we had to wait another hour before the procedure could actually begin. Waiting is a heavy experience and I haven't yet figured out how to lighten this burden. I know I make mention of it frequently and I suppose it is a way to emphasize its constant presence in my life. I will give this some more thought; this waiting and how to transcend it if I can. For now, I am focusing on being still.

As Aria and Doc were heading to the procedure area of clinic I was chasing down Rianna who desperately wanted to join them. As I walked down the hallway, I noticed for the first time a beautiful collage of paper kites behind some plexi-glass. I have walked by this thing more than a dozen times and why I caught notice of it today is a mystery. As I walked on a little farther, Dr. Trobaugh came out of an adjoining office. We exchanged a cheerful hello and a sort of congratulations that we can take this next step. She smiled so genuinely in her confident compassionate casualness and said, "Smartie?" as she extended her hand offering me one of those sugary candy pills. I adore Dr. Trobaugh for these little bits of humanity that make her so real to me. I declined her offer telling her that I was already fully satisfied having snacked on Fritos, Doritos, rootbeer, milk, apple juice, chocolate pudding and these weird little juicy gummy treats. I feel sick describing it to you now. We laughed and laughed shrugging off the reality of "clinic eating.”

Aria's procedure went with out a hitch. As we joined Doc and Dr. Trobaugh in the procedure room, Aria was still under sedation and just beginning to awaken. Rianna was sound asleep in my arms. She was so zonked out, in fact, that she looked as if she'd been to the year's best toga party. Rianna truly remains our comic relief. Reo, on the other hand, was beginning to lose his cool. He was grumpy and frustrated. I don't blame him because we had been in clinic for 3 1/2 hours and Aria still had to receive her chemo. It is a long, long day. As Aria was waking up and eating, we had an opportunity to talk with Dr. Trobaugh about what maintenance is going to look like. This is the gist of that conversation.

Julia: "So Dr. T, I've been reviewing the maintenance protocol and I understand that this is the place where people want to be but tell me, what's so great about it?"
Dr.T: laughing in a sighing sort of way. "I know. There's nothing really all that great about it. It is still daily chemo. It is still regular clinic visits and so forth but the key difference is that generally kids really do feel better. They go back to school and resume life as it used to be. Furthermore, we'll get to place where you aren't coming to clinic as often as you have been."

We continued our conversation sorting out the details of her medications and her clinic follow-up appointments. Today, Friday August 1, 2008, our first day of maintenance, Aria received and will receive prevacid (X2 daily, which helps with stomach acid), ondansatron (X2 daily, which relieves nausea), methotrexate (via spinal fluid this will be once every 3 months), vincristine (via port access once a month), 6MP ( once daily until the end of treatment), Dexamethazone (X2 steroid for the next 5 days), Septra (an antibiotic that she’ll take X2 on the weekend). She will take the steroid for the first 5 days of every month until the end of her treatment. She will also take oral methotrexate once a week but since she received it in her spinal fluid today she didn't need to take this dose. We are planning on a follow-up clinic visit to check her counts in 2 weeks and then we return to clinic in another 2 weeks for more lab work and an examination. We will continue going to clinic twice a month for the next 3 months or so. It is all a matter of finding the right number for dosing and checking her counts. Dr. Trobaugh said that around 6 weeks from now, we should have a pretty good idea of how well her body is going to tolerate this regime of chemotherapy. Her target ANC is supposed to be between 500 - 1500. Once that magic number is found, she said, most kids general stay between 750-1250. As you may recall, Aria didn't do well during the phase called ‘Interim Maintenance’ on the 6mp drug. She was sick/vomiting every single day. It is almost too much to think about that again but here I am facing it. I can only hope that she doesn't have that same reaction and if she does then we can change the dosing of her medication. I'm gathering that once we find that magic number then we'll go to clinic once a month and will have periodic blood work done.

We were told that Maintenance is still a little tricky because she is still vulnerable for infections and fevers and subsequent hospitalizations. The reality is that she will be exposed to viruses and she'll get sick and we'll take it from there. That aspect of her cancer and treatment is so familiar to me now that I don't worry anymore. It has become a way of life, if you will. I was able to ask Dr. Trobaugh what life will be like after maintenance. It seems strange to think that we'll be going to clinic monthly for in house treatments and have nothing more to do with clinic after that. How can that be? She reassured me that indeed that is not the case. The first year after maintenance will see us in clinic every month still for lab work monitoring her counts. During the second year, we'll return to clinic once a month or once every 3 months and so forth. During the third year, we may return to clinic once every 3 months or every 6 months and so on and so forth until........

Aria should be done with her chemotherapy treatments sometime in March or April of 2010. I find this a staggering notion. I can't quite wrap my head around it. I'm finding myself doing one of 2 things. I'm reflective thinking about Dr. Trobaugh explaining our road map of treatment that first week we were in the hospital. Maintenance seemed like a million years away. I'm so grateful to be here taking the first step in this phase. It is bittersweet and yet remarkable. The other thing I'm doing is focusing not day to day per se but rather 2 weeks to 2 weeks. The day to day idea is still a part of the process to be sure but it helps me to look forward a little. Sometimes the day to day idea feels a bit clumsy like I'm trudging along. When I look up and out, I feel lighter somehow and this helps me to keep moving. I know the trappings of this mode, which can seduce me away from the many tender moments in any one day or moment. I think I am well enough aware so that I can occasionally allow myself some leniency and forward thinking.

I have taken the first step on this long road and I can see the end. Truly, it is small and nondescript but it is there nonetheless. Today, I met a couple of families where I couldn't help but question where is their end? They have been dealing with cancer or some other blood disorder for years already and there is no end in sight for them. I suppose one accepts that this is life. This becomes a way of life, which actually serves as a wonderful reminder that my perception of life 'as it was' and 'as it is', is muddled by not what it is but rather what I want it to be, and 'as it could be'. These are illusions, projections of my attachments and desires. I look at other people with great respect because on some level they have accepted ‘what is’ without illusion. I admire that a great deal and hope I can one day attain that for myself. Until then, I feel prepared and confident. I feel tremendous gratitude and hope. I feel immense love for Aria, Reo, Rianna and Doc. I am thankful for you and as I end this email. I praise You for the gift of this day. ~j