October 5 Aria update

Aria LOVES her popsicles.


Reo and Rianna engrossed in yet another movie!

This is Aria's standard pole of IV fluids and antibiotics.

This is what a blood transfusion looks like. A bag of blood hanging from the IV pole that is infused into her system over a period of a several hours.


In patient hospital experiences are always profound both from the perspective of considering what is happening to Aria but to also step back and observe what's happening to others. I find when I do this, I come back to Aria feeling more humbled, more present and more in awe of her than ever.

October 5, 2008
Subject: October Aria update
It is 8 20 pm Sunday night October 5, 2008. I have a nice glass of red wine with me as I write. It has been a long day but a really good day in many, many ways. Let me begin by saying that it appears that Aria does not have pneumonia. That was certainly a mighty worry for me but that doesn't seem to be an issue at all. I don't think the on call doctor even mentioned it. I'll be sure to mention to Dr. Trobaugh tomorrow, however. I need that peace of mind.

When Doc called me first thing this morning, he let me know that they hadn't slept well. Aria was being monitored closely with vitals every 2 -4 hours and various other reasons for coming into the room. They were pretty excited to have us come to the hospital so I got the kids ready, packed up with all kinds of activities and headed out. We arrived at the hospital at 9am. The kids could not wait to begin what was going to be a day of watching movies. The hospital has all kinds of movies that we don't have at home. In fact, I'll mention here that if you have old VHS movies or DVDs that you no longer watch please consider donating them to your children's hospitals. In Aria's case, she can't leave her room because her immune system is so suppressed. She doesn't really have the energy or the interest to do anything. Activities like coloring or painting or pasting just don't sound fun. She just wants to zone out in front of the tv and watch things she doesn't get to see at home. Having a huge variety of movies is so wonderful!

When I arrived, Dr. Reynolds, the on call doctor had just left Aria's room. Doc said that they had a good consultation. In terms of numbers; Aria's ANC has completely tanked to 9 this morning! Yesterday she was 35 and for the phase of maintenance, we want to target her ANC somewhere between 500 - 1500. It is quite preferable to have her ANC be around 1000. If it falls below 1000, she really isn't supposed to be anywhere in public; movie theaters, large crowds, malls and even school is questionable. If her ANC drops below 500, then we have to change her diet; no fresh fruit or vegetables and definitely no exposure to any public place. She really isn't supposed play outside when her ANC is that low. Today her ANC was 9, which basically means that she has no immune system working for her. This is very common and part of what we knew to expect. We've been down this road before.

You may be wondering what causes this to happen? I don't actually have a 3D understanding of it myself but let me try to convey what I think to be true. This is an elementary level layman's understanding. Please understand that. For the past several weeks of this maintenance chemotherapy we've been monitoring her closely every 2 weeks waiting for the full brunt of the medication to take hold. A week ago this past Friday, her ANC was 580, which shot up a red flag to Dr. Trobaugh that we needed to cut back on her chemo a little. Her body was metabolizing it in such a way at this point that it was taking the ANC down a little too far. So like my brother said, we dialed down the medication and were preparing to check her counts in another 2 weeks to see if her counts came back up. If they came back up to a level that was too high, then we'd dial up the medication a little and re-check. It is a dialing up and down process from here on out. What was added to the mix here was that Aria got a cold. The chemo made it so that her white blood cell count (white blood cells are what we need to fight infection) were reduced. This is perfectly normal for her and what we want to happen. However, the medication may have reached a point where it knocked her white blood cell count down a little too much, so much so that the cold virus she got just stepped in and completely obliterated things. She doesn't have enough fighting power for this virus so everything just started to kind of shut down. A normal white blood cell count for Aria is somewhere between 5000-12000. Yesterday, Aria's white blood cell count was 700 and today it was even less. She is incredibly susceptible to anything so we have to be hyper-vigilant.

Aria's hematocrit yesterday was 25. It had been nearly normal at 32 for weeks and weeks. This morning her hematocrit dropped to 22. The cut off for a blood transfusion is 20. Aria's hemaglobin was also decreased. Now this is something I don't know at all. I know the word hemaglobin but I have no idea what it looks like, how it functions, what its purpose is and so forth. I just take the number and know that it is low. The point being that Dr. Reynolds mentioned to Doc that her rapid decrease in the ANC, hematocrit and hemaglobin suggested to him that her counts would continue to trend downward before they started improving. He suggested that she receive a blood transfusion today. He just felt that it would give her body an added boost and also ensure that plenty of oxygen was being circulated throughout her body. Dr. Reynolds is an incredibly experienced physician. He's someone who has seen every single child diagnosed with leukemia die to almost every single child diagnosed with leukemia cured. Doc didn't question his recommendation or authority and expertise and neither did I.

Aria is receiving IV fluids and 2 different antibiotics. Her chemo is being held until her counts improve. She has not had a temperature since yesterday and has in fact been normal since arriving at the ER. This is such a positive sign. Her nurse today even said, "golly, if it wasn't for her darn ANC, she'd be outta here!" She really is doing well. Her spirits are high. She has pretty good energy. She's in no pain or discomfort. Her punkiness is all but gone so to look at her it is such disconnect as to why she has to be hospitalized. I struggle with that a little I have to say. It is hard for me to look at her knowing she looks so well and seems so well and yet she isn't. That part is very painful to me and I suppose always will be.

I spoke with my sister Susie this morning. She was so gracious and generous to mention that she admires how we are facing this as 'a family' in light of the additional hardship that may bring. I appreciated hearing that so much because as hard as it is sometimes, it is always the right thing to do for us. I mentioned to her that yesterday on the drive to the ER and in the ER itself Aria was upset about having her port accessed, something she's experienced dozens of times now. But these circumstances were different. She wasn't going to clinic. Krista wasn't going to be playing the guitar. Her parents' energy was different. She understands that the ER is an amped-up kind of place. She understands that things are different and serious. She was frightened. Reo was a champ.

On the drive to the ER he held her hand and kept saying things like, "I know Aria, I know. You just have to be brave. You can be brave right? I'll hold your hand. You don't have to be scared." It makes me want to cry to think that this 7 year old boy understands this process so clearly that it already dictates a heightened level of compassion and empathy. Aria needs this. She held on to him and took in every single word he spoke. He wasn't at her side when her port was accessed because he was forced to wear a mask and found that upsetting. He sat near her telling her she'd be fine all the while working out how to make himself fine having to wear this weird mask. She needed him and he needed to be with her. Rianna is on the fringe of it all because of her age, but without her there something would feel amiss. In most cases, it simply works for us to be together.

Being an inpatient is always profound. The ward was quiet and solemn. Kids who need to be in the hospital for any reason is no trivial matter. This little blip that we're experiencing in the big picture may be wee, but I tell you, right now it is enormous. There is something very wrong about Aria having to be in the hospital. I suppose that is equally coupled with there being something wrong with her having leukemia in the first place. I'm not trying to find reason, nor do I find trying to assign fair or unfair verdicts to this situation relevant. I'm simply trying to find balance. I'm trying to find how best 'to be.'

When we reached the oncology ward this morning, we had shared an elevator with a mother whose son is also an inpatient. I had written about them a little while ago. He has leukemia as a result of his treatment for lymphoma. He had had a bone marrow transplant almost a year ago and was diagnosed with leukemia in June. He's now in the hospital for a bad infection that has affected his pancreas. He's been an inpatient for 2 weeks now. His mother is lovely, filled with beautiful soft energy. She seemed tired to me, quiet, subdued, worried and I'm guessing sad. We're next door to each other and I spent the day waving at her just trying to send some positive energy. I would do anything to alleviate her suffering and I sense that you know how I feel; that you've felt this way too while thinking of Aria and I. I'm very humbled by that. Chances are that he's going to be fine. Chances are that his infection will be cured and he'll leave the hospital and enjoy yet another day. This is so promising to consider and I've kept that thought in a powerful light.

I also had the great fortune to speak to a mother I had not seen for a long time but had first met when Aria was diagnosed in January. In fact, she and her daughter were playing a card game in the playroom of the outpatient clinic the day we were admitted. I can clearly see every single movement of that time. Aria was sitting at a little table across from this mother and her 7 year old daughter. I remember the nurse coming in and putting a hospital bracelet on Aria's wrist. I remember asking Katy, the nurse, who is one of the most beautiful people I have ever met, if this was standard procedure -- to get a bracelet. She replied that she thought we were being admitted. I commented from a place of denial and disbelief that it was still just a 'possibility'. Doc however, said that he was pretty sure we were being admitted and Katy so gently and calmly said, "I'm certain you guys are being admitted today." Her words were like a warm blanket after spending a day in the snow. I'll never forget it. I remember trying to strike up a conversation with this other mother as if trying to regain a semblance of normalcy. I asked her how long she'd been coming to this clinic. She told me 4 years. I remember not being able to swallow. 4 years?! Cancer can go on and on for 4 years? It was beyond my comprehension, my understanding and my experience. I couldn't wrap my around it. This was also before I knew what Aria's treatment was going to be like and how it felt to, literally, fall into the reality of 2 1/2 years of chemotherapy! The whole thing was so unreal. She asked me then how long we'd been coming. I told her that 2 hours ago we got the word that 'they thought' Aria had leukemia. I remember she put her cards down briefly and looked deeply into my eyes. She was so understanding and so full of presence. She said to me with a clear and deliberate gaze, " I know. I know what this is like for you. It will get better."

I wasn't able to talk to her anymore since we were whisked away to that infamous meeting with Dr. Trobaugh. I've seen her maybe once or twice since and we've never been able to talk. As I reflect, I can't help but think that when I saw her, everything was still so new that I wasn't talking to anyone. Today was a completely different story. She was sitting in the lobby area with her son and I recognized her and felt compelled to tell her how much her words meant to me and how I've never forgotten them or her. So I did and we talked. I finally asked her name and her daughter's name and how she was doing. It was a guarded conversation because her son was sitting there and although he isn't being spared the reality of the situation per se, I could tell that she was making a 'motherly' decision to be cryptic in the details. Her daughter isn't doing well and they are readying to go home and have their final time together. They celebrated her 5 year treatment anniversary just recently. She is 8 years old and I gather will die fairly soon.

As I sat there listening to her, I swear she was glowing not in that exuberant pregnant kind of way but something entirely different and not like anything I had ever seen before. I felt like I was sinking as I was sitting there. I looked at her, found her eyes, and said, "I don't know what to say." because I felt like I needed to say something. I didn't, of course, because there is nothing to say. She was so full of grace. It has been a long, long 5 years for this family. She said, "We've had some really wonderful times and some really difficult ones too but we're now at a place where we have to face....." her voiced trailed off and she added, "I'm not looking forward to that day but I do know that I'll be ok." A chill raced up my spine and it was all I could do not to jump into her lap and embrace her as if I would never let go. It was at this moment that Reo raced over to me and shouted, "Mama! You are just taking too long!!!" We burst out laughing. Oh my God! Kids keep it so real! It was so wonderful and once again she was filled with grace to allow this child to ruin this moment and yet create another moment that was perfect. I knew I needed to leave and I knew that I might never see her again. I can't remember if we shook hands or if I reached out to touch her in anyway, but the look we exchanged will remain with me for all time. We nodded to each other and I don't even remember what we said, if we said anything. We just looked into each other's eyes and then I left back to my world and she to hers.

As I was driving home tonight, I was thinking about her. I caught a glimpse of her daughter this afternoon. I don't know how it would be for me to visit them tomorrow if they're still there. I'll just have to trust my instinct when I get there, but I sense there's some unfinished business here. Regardless, I was thinking about the mother and what a wonderful mentor she is to me. I believe her when she says that she'll be ok. She is facing what has to be the most devastating thing any parent can face no matter what the circumstances. I sense from our brief exchange that she understands that this has been a long time coming. She's been well prepared and they have exhausted their options. She is left with facing the inevitable end and is sorting out how to accept that somehow. I have tremendous admiration for her. When I think of her now, this thought thunders, "If ever I'm in her position, I sure hope I can be like her." As I was driving down the 2 mile country road that leads to our farm, I was once again struck by the notions of making connections, of exchanging Spirit, of reaching out with humanity and simultaneously receiving it. Some may say that this is God in action. This is God bringing people together. I can't help but wonder if this connection, this soulful bond is not God on the outside looking in but God itself, which is, frankly, such a pathetic way to describe what it actually is. It transcends words and descriptions. It is this sense I have that we are mirroring one another. I look at her and see myself, not because I sense that I'm going to experience what she has but because we have connected on such a bare-bones, totally exposed and vulnerable level. We were connecting at our very cores, which is that place of human dignity that reinforces the idea that we are one. We are all connected and I found my time with her filling me with this overwhelming sense that the point of it all isn't to flounder in the murky wonderment of why but instead to find solid ground and peaceful coexistence with what simply is. ~j