March 2009 Hospital stay

March 14, 2009 (pm)
Subject: Aria

Aria remains in the hospital. She's not well at the moment. Her fever never broke and spiked to 102.3. One time when she was getting some tylenol, I think the nurse pushed the medicine too rapidly and this caused Aria to gag and then vomit the entire contents of her stomach. Needless to say, she didn't have much of an appetite for the remainder of the day. I'm so thankful she's on IV fluids because she just doesn’t want to drink anything either. Her temperature was slowly coming back down all afternoon but when I left an hour ago she was burning up. She is no longer full of life and spirit, although it's in there. She's tuckered out.

So am I. I don't have it in me to write much more about this day, although there is plenty to say. I have to admit that maintaining this veneer of bravado, albeit genuine and sincere, is exhausting. We are fine but we're not. Aria is in the right place but she's in the hospital. I want her to stay and get better and I want her to come home immediately. I know she will improve in a matter of a few days and this enables me to smile, to joke, to hope, to laugh and yet I also want to cry. I want to sit and sob for not only Aria but for the several kids and families I saw today...for the thousands of kids and families...for suffering in general....for having to face Mystery with what sometimes seems like nothing more than concepts of hope, courage, fight, strength and the like that leave me dangling from a silken thread at the mercy of a whimsical breeze. I must be steady in 'unsteady' and so I am. ~j


March 15, 2009
Subject: Aria day 2
Aria's fever spiked again last night around 8pm to 102+. By 4am this morning, Doc said it was normal. When he called me at 7am, they didn't know what her ANC was so he said that he'd call in a little while to let me know. He called about 30 minutes later and apparently the doctor on call didn't order 4 am labs, which is something they've ALWAYS done. So, they were getting ready to draw her labs then and as of 9am, Doc hasn't called me with the results. Aria was in great spirits when I talked her. Reo and Rianna talked to her too, which was a first and was too adorable for words!

As it stands, the earliest we'd be able to leave would be around 8pm tonight. This is highly doubtful so we're planning on another day and will just see how it rolls. I'm aware that the tone of this email is newsy and different than my normal story-telling prose. I have thoughts swirling in a disconnected kind of way. My tendency is to allow my thoughts to percolate a while when suddenly they're ready to flow and I can sit and write with little effort. That isn't where my head is now. So I'm just going to give you news clips until I can weave this bit of the journey into a more telling tale. Mind you, I selfishly do that for myself and you are simply the innocent bystander and recipient of those thoughts!

As soon as I know more, you'll know more too! ~j

March 15, 2009
Subject: Aria part 3
I'm home now after a much shorter time in the hospital. Aria needed some peace and quiet so she could rest.

Aria isn't well. This isn't to say that she isn't doing well. She's doing everything she can. She had moments today that were playful and cheerful but most of her moments were pale, sullen, weepy and sick.

Aria's temperature today got as high as 104.6 around 2 30 this afternoon. (it dropped to 101.6 by about 5pm)Blood cultures were immediately drawn. Tylenol was immediately put on board and the doctor came by 'to chat.' I was reassured that this is par for the course when dealing with a virus. We simply have to let the body do its thing. Aria's ANC did in fact drop to 240 today, as we suspected it would. It is likely that it will continue to drop but we don't know that for certain. She may hold steady. We simply don't know.

It was another day filled with restless unknowns and uncomfortable certainties. It was day filled with little laughter but plenty of relief being together.

I'm not as tired as I was yesterday but I'm scattered. Restless is a good word. I caught myself being more rigid with Reo and Rianna trying to control them, to keep them quiet and still. It was a meager attempt to control the situation. I'm home early so they can have more freedom to play, be loud, be joyful and be kids. I'm home early so Aria can sleep, heal, and restore. Doc is with Aria and they are planning a quiet, quiet evening.

My mind is racing and I have this urge to pace and at the same time I'm a little numb not quite knowing what to do with myself. It is a peculiar feeling. Part of me wants to be able to shrug and take it all in stride. I've convinced myself somewhere that this is what it means to be brave and courageous. Another part of me wants to slap me in the face and shake me senseless all the while screaming in an oddly calm voice, "This is my daughter who is only 5 years old. She has leukemia and despite that she's done well and we've had 3 months to really enjoy her wellness, the severity of her disease strikes with a fury." It is a brutal reminder that leaves me breathlessly haunted. This is one of those times, those moments when living in it, through it, present in and to it is just about the last thing I want to do. So, I'll resort to simplicity; pbj sandwiches, apple slices and milk. Story time in a little while and then bed time. I'll count my blessings even though that exercise is sometimes stupid and absurd. I'll do it anyway and be present to it. I'll call Aria and I'll tell her again how much I love her and then I'll say goodnight to this day. ~j


March 15, 2009 (pm)
Subject: Aria is an oven

So Doc just called and Aria's temperature is back up to 103.3. But here's the strange part. I could hear her singing in the background so before he told me the news of her temperature, I said with a big smile on my face, "Well, sounds like someone is feeling better!" Doc quickly and soberly replied, "Yeah, well no. Her temperature was 103.3 but she just woke up from a great nap."

Aria needed to rest and she did. It was so healing for her. This makes me so happy.

Aria got on the phone. "Hey honey, how are ya?" I said.
She replied in song, "I'm a little cooking oven. I'm an oven. Oh I say! I'm a little cookin' oven!"
I giggled and thought, "Am I laughing or crying right now?"
Aria then said, "Hey, Mama, when you get here you're gonna see some silly business!"
I have no idea what she is talking about and she doesn't elaborate.
I simply say, "Oh Yeah! Well, there better not be any fun going on while I'm gone!"
Aria giggled and then said with a more serious tone, "I love you Mama, good night."
"I love you too sweetheart!" I told her.

Doc got back on the line and he and I both sighed....What is there to say? What is there to do but to simply be. ~j

March 16, 2009
Subject: we’re ALL home!!
We all got home today around 4pm. I know. It is as crazy as you think it is. I told one of my Goddesses today, "you know this is such a ride. I hate amusement parks and this is not amusing!" 104+ yesterday to home today! Wow!! We feel very lucky and guarded at the same time. Aria's temperature was a steady 99.3 all day long. Her cultures were negative and her ANC was 496 this morning. She was eating, drinking and peeing so things were definitely looking terrific. Dr. Trobaugh said that since we're scheduled to come to clinic tomorrow anyway for her monthly exam and chemotherapy, we could go home today and come back first thing in the morning. We jumped at it! Part of me hesitated. I won't kid you. I kept thinking, "Geez, we have to come back tomorrow anyway, why not just give her one more 'safe' night and chemo tomorrow here where it is 'safe' and I won't have to feel like I keep coming and going." Clearly, I was settling into the hospital experience, which is always such a peculiar mix of emotion. I was also thinking, "Doc could really use a night in our own bed! We could all use a night at home. Even if it is just one night, the healing and restorative powers of home are enormous." When Dr. Trobaugh's nurse, Mary came around and ask if we wanted to head home I told her, "We're outta here!"

So Aria was given a high potency broad spectrum 24 hour antibiotic (ceftriaxone) and we were given instruction that if she spikes a fever and nothing else that we could go ahead and give her tylenol, which is something we are never allowed to do. But with the antibiotic on board, she'll be covered so we can treat the fever. However, if she gets shaking chills or vomits or simply doesn't look well, then we need to call and bring her back.

So far so good! She's had a bath, some pizza and an icecream sandwich. I suspect it will be an early bed-time for her. Our appointment is 10 30 tomorrow morning. I'm worried about the effect of her chemo tomorrow. More than likely it will make her counts go down, but I was reassured that it shouldn't be too bad. You know what? It really doesn't matter. I can't control what happens. I simply have to be present to it no matter how it plays out. I will.

Doc and I were marveling over the fact that we were only in the hospital for 2 nights but it feels much, much longer. It is as emotionally draining as you imagine it to be. It is strange to be so frightened, concerned and raw after having spent just 3 days, knowing full well that several families around us had been there for several weeks. I don't know how to rationalize that. I find myself groping for understanding and it doesn't come. Once again I find myself sitting in the comfort of, "it just is." ~j