Friday, September 4, 2009

October 7 home not home

One of the hardest things about being in the hospital is knowing that we’re in the right place and we’re safe, simultaneously battling this itchiness to go home and escape the intensity of these surroundings. The waiting is odd and wrapped with anticipation that is laced with anxiety. It isn’t appetizing fair for the mind or spirit.

On this particular day, we rode a ride that I hope never to experience again!

October 7, 2008
Subject: We’re Going HOME!!!

I'm on my way to take Reo to school but wanted to tell you that Doc called a little while ago and said, "ANC of 900!" That's right folks! 9 HUNDRED!! I'm so amazed. The body is such an incredible thing! WOW!! They had a good night last night too. I know we slept really well here. I feel so much better! Aria had her chest x-ray at 4 am this morning. Why they got a child up that early is sort of beyond me but who cares?! We're going home! Dr. Trobaugh doesn't round until later this morning and hasn't read the x-ray yet so we're not going anywhere until later on. Hopefully, we'll be out around noon. We'll see. Suffice it to say, we are over the moon, blissed-out happy!!!

Subject: we’re NOT going home afterall
@@###!!$&*$!!!!!! and SUPER @*!!#$%!!!! Someone read the numbers wrong and Doc said that he didn't check the math. Poor guy! Damn it! Aria's ANC is actually only 140. Still way better than 45 yesterday but below the 200 or so that we need. Dr. Trobaugh has made exceptions BUT, Aria's chest x-ray remains unchanged. This also isn't great news. Oh, by the way, in case there was ANY question, I am SO NOT a radiologist. I thought it was her left lung. NOPE!! The lung in question is the right one. They aren't calling it a mass or any true infiltrate, (whatever that means. Doc tried to explain it to me but I was so tired that I just nodded as if I understood but I don't really!), but they are saying that it is 'hazey'. We don't really know what that means and Doc wants to talk to Dr. Trobaugh about it pretty specifically today. Suffice it to say, that because it has been unchanged for 3 days, it is probably viral instead of bacterial, which is why antibiotics are NOT kicking its ass. Shoot! shoot! shoot!! Aria is in good spirits and is feeling really well. My guess is that we just have to wait for that ANC to come up. If she continues on this course, we ought to hit that mark tomorrow. One day at a time folks. One day at a time.. I must say a whopping thank you for coming along with me on this ride!! It helps so much. I can see you all riding right along with me and the comfort that brings is beyond expression.

Subject: Going home for REAL!
What a rIde! Doc just called and said that Dr. Trobaugh is letting us go home! She said that Aria's lungs sound clear and her overall counts look good even though her ANC is still low. They're going to give Aria a big dose of antibiotic before she leaves and we'll go back on Friday to check her counts again, which is something that was already scheduled. Here we go!!! I'll be going to get them in a few hours.

Subject: We’re HOME!
Just wanted to let you all know that we are home and settled in. Aria is beside herself! She thought it was very fun wearing her new footsie jammies home and being carried the entire time so the feet wouldn't get all dirty! What a spoiled little pixie!! Heavens! She is absolutely exhausted! She fell fast asleep on the drive home and Doc put her in the big bed where she napped for a good long while. She's now playing with Reo and her toys. It feels so, so good!

I'm processing some things; people I've met, things I've seen, things people have said to me. Like virtually everything I write, thoughts percolate for days and days slowly dripping into, hopefully, thoughtful discourse that I send on to you. Right now, it is 4 o'clock, well after 5 pm for my east coast friends, which means I'm going to pour myself a nice glass of wine and relax. I rested very well last night, but I still feel tired. Right now my fatigue has everything to do with my emotional armor slowly being peeled away. It is a heavy load to carry day in and day out.

I cannot thank you enough for riding this day with me. I've been flopping all over the place and took you with me. It has been extremely comforting to know that you're there. I raise my glass to you and to Aria! ~j

October 6 Aria Update Part 2

October 6, 2008
Subject: October Aria update Part 2

I'm home much earlier today. I am wiped out! I didn't sleep well last night at all. Rianna woke up in the middle of the night and had a freak barf session. It was so weird. I spent time cleaning her up and the bedding and then was wide awake fretting over her. "Does she have the flu? Does she feel warm? Is this a fever coming on? What will we do tomorrow because if she's sick she can't go to the hospital." Buzz-buzz-murmur-murmur went my mind! I think I nailed down about 2 hours of sleep. So, I'm tired.

Doc called me this morning to let me know that Aria's ANC is back up to a whopping 45! Yeah, we aren't going anywhere. However, she really is getting better. She's off IV fluids. One of her antibiotics has been stopped and her counts are improving. Her hematocrit is back up to 31 after her blood transfusion and Doc said Aria was bouncing off the walls last night she was feeling so good. Doc did mention that Dr. Trobaugh was a little concerned about her chest x-ray though and didn't feel that we were entirely out of the woods yet. Pneumonia? We’re not sure. She wants to repeat the chest x-ray tomorrow morning and see if the antibiotics are doing the job and getting rid of whatever was there. I'll know tomorrow morning. It is possible that we could go home tomorrow if her ANC takes a flying leap above 250. It isn't likely but it could happen. We're taking it one step at a time. Doc will call me first thing in the morning with the lab results and then we'll know how to plan our day.

There's more to say..a story or 2 but forgive me, I'm heading to bed. Let me send you off to bed knowing that Aria is so much better. We are all healing a little bit more each and every single day. ~j

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

October 4th Aria was Admitted

This is how our morning began after spending a few days feeling very anxious about Aria. Looking back, I think part of our anxiety was simply our inexperience and as strange as this may sound, that was a good thing. You see, Aria has not had to be admitted to the hospital very often compared to a lot of other kids. Compared to kids without cancer, multiple hospitalizations are absolutely unheard of, but in the world of cancer, hospital stays are simply a part of life. This was Aria’s 4th hospital stay since she was diagnosed, which is minimal and to some laughable. Many families feel like they are in some kind of revolving door the first year of treatment, so upon reflection, I realize how lucky we’ve been. Regardless, the uneasiness you may sense from reading what follows reflects not only our limited exposure to the inpatient oncology world but how one never really gets used to it no matter how often it happens. That’s yet another bitter bite to swallow at the table of cancer.

October 4, 2008
Subject: Off to the ER and an Admission.

101.8 is Aria’s temperature. We're off. If her counts are above 500 we won't have to stay. If they are below we will. We're packed and ready to go. Aria is in tears. "I'm scared." She understands that this is big. Poor thing. Please keep her close! Will let you know more soon. I sense each and every one of you! ~j

Everything went very smoothly today. By the time we reached the ER her temperature was normal, which is great. Her port was accessed and what seemed like liters and liters of blood was drawn. I was amazed at the number of vials I saw. I didn't count them but there were a lot! We met with the ER doctor, who was wonderful. He asked specifically about her cough and we told him that it was productive and certainly upper respiratory; typical cold type stuff. He mentioned that she had a little fluid in her right ear. It wasn't inflamed but could be the beginning of an ear infection, which would be her first. He took a listen to her chest and wanted to order a chest x-ray just to make sure. This is when my mind started racing and I mean really racing. "What's up with the chest x-ray? That can't be good." Naturally, I turned to Doc who reassured me that it was pretty typical 'better-safe-than-sorry' kind of stuff. We all went to the x-ray area together, which was actually pretty cool. I had never seen anything like that before. Images of "Mike TV" from the original Willy Wonka movie started swirling through my head. Aria was standing on a small stool in front of a square shaped bull's eye type thing. They took one x-ray and the image immediately appeared on a computer screen that was beside me. What I saw was that her right lung looked like what I had seen in pictures. What struck me was that it was all the same color. The left lung looked different. It had the right shape, but there was this edge along the bottom, like a wispy cloud that was much lighter. I noticed that I immediately began to panic a little. The second image was taken and this was a side view. I couldn't make heads or tails of that one at all. As we were readying to leave, I shot Doc this pleading look as if to say, “Did you see that? ! What the heck does it mean?" He was not reading the look at all but he was trying to be reassuring. I finally asked him, "Doc did you see that first image? Did you notice how her lung look different and kind of had that lighter look?" Doc said that he had seen it for only a split second and didn't think he saw anything. I mentioned that it looked weird to me and before I allowed myself to go into full panic mode I caught myself and said out loud, "Ok, so now I'm a Radiologist and I can read x-rays?" Oh my God, is there no end to my absurdity? Doc smiled and gently agreed with me. That is, we both gently encouraged me to shut up! We went back to our room and waited.

Just a short while later our nurse let us know that we were being admitted. She didn't know the numbers exactly but apparently the ER doctor and the oncology doctor on call decided to go ahead and admit us. She also mentioned that the ER doctor was going to come in and talk to us. Uh-oh. He came in a few minutes later and had a completely different look about him. I was so sick to my stomach by this point. He started with, "Well, there are some unusual numbers here." I immediately went to, "Oh my God! Her leukemia is back!" I can feel the tears start to build. He shows us her white blood cell count, which tanked and mentioned that she has an ANC of only 35! That's it? I was starting to relax. He also mentioned that there's something on the x-ray, could be fluid, could be typical virus stuff, not quite sure yet. They aren't willing to call it pneumonia but....."I'm sorry did someone say, pneumonia?" "wwwrrrriiiiinnnnggg!" Oh man, there goes my stomach beach towel again! I hadn't had that sensation for a really long time. They started her on a big gun full spectrum antibiotic and he was very reassuring. He mentioned that the approach they're taking with the antibiotic is the right one. Doc was so gracious to say, "You know, Julia saw something on the x-ray! She did. She said she saw something funny." How do you like that? I'm a Radiologist afterall!!!

We went up to the familiar oncology ward and were greeted by several old friends. It was so nice to hear, "Wow, we haven't seen you guys in forever!" We spent a good while on just admit type information and settling in. We were able to get some food and watch a movie. Aria was very comfortable and very much at ease. As I was getting ready to leave I asked Doc about Aria possibly having pneumonia. This is very hard to consider. He told me that pneumonia was not the reason for her admit, but it is still yetto be determined. He then said something like, "Whatever it is, it is serious, otherwise we wouldn't be here." That was one of those wonderful and dreadful things to hear. His parting words were, "We're in the right place." And so we are.

I'm tired. It has been a stressful few days. I'm desperately trying not to second guess myself.
“ Should I have had her labs drawn on Thursday? Should I have blown off grocery shopping on Thursday and not exposed her to whatever was there? Should I have taken her to the ER on Friday when things were so 'if-y'? I suppose the really hard thing about this is that she had a stupid little cold. A stupid little cold that Reo, Rianna and I all had and still sort of have. I know that for her it is more serious. I know it but I have to admit that I'm still realizing just how serious it is. A stupid little cold for Aria is not a stupid little cold. A sniffle for her is something bigger and something much worse. This is really hard. I'm reminded once again that I'm not allowed to let my guard down. I can't look at her the same way I look at the other kids. She's very different. If this turns into a full- blown pneumonia, I can guarantee you that my heart will be broken and I will struggle with feeling like I failed somehow. Perhaps that doesn't sound very rational to you but when I look back at these past few days I realize that maybe I should have acted with more commitment. I don't know, maybe I'm just searching for what I could have done differently to avoid this. Maybe there's nothing but maybe there's something. I tell you this has taught me to kick my vigilance up just another notch. It is all so breathless and hard to digest.

Doc said, "In the big picture this is just a little blip along the way but in this moment it feels huge." It does. It feels big. I feel vulnerable and I feel so, so helpless for Aria. I feel so sad for her, just - so sad for her. How she is spending this part of her childhood is so cruel. I'm reminded that although I've pieced together my broken heart, it is more than a little fragile. I realize once again that the world I knew has been shattered and I am learning to walk among the shards. ~j

Orangish-Red Alert

This is what happens when you have a child with cancer. Life is always a bit on tilt. I often find myself incessantly wondering, “Is it safe to do this? Is it ok to do that? Does she look alright? Is she feeling warm? Oh no, are those the sniffles coming on?” Any time I heard of someone sick in her classroom, I experienced this visceral kind of panic and deep-seated ‘uh-oh’ kind of dread.

It is almost impossible to live in ‘the moment’ under these conditions, try as I may. I couldn’t help myself from wondering, worrying and being on alert. I suppose this is anticipation and preparing for the worst but the trouble is that it sometimes inhibited me from enjoying the moment so worried was I. It was hard to play and feel sincere about it. It was hard to feel present to Reo and Rianna when I was always looking over my shoulder at Aria waiting for some kind of change to happen. I find this aspect particularly exhausting and I haven’t figured out a way to improve my coping. I’m simply taking note of how I feel while it’s happening and then I go from there. It is worth mentioning that this kind of worry and dread isn’t fictitious. There are reasons for it but it is so important to let Life take its course and to follow along in a complete sort of surrender. It isn’t a ‘giving up’ kind of thing at all either, but more like a true surrender to a process for which you have no control. This takes a great deal of trust and I am learning that when I surrender in Trust I feel better. (September 2009)

October 3, 2008
Subject: We’re on Orangish-Red Alert

Aria hasn't fully recovered from her cold that put me on red alert last week for which she stayed home from school all 3 days. She was able to attend school this week because although she had a cough and a runny nose, she felt fine. That is, until Thursday. We were out running errands and she said, "Mama, I feel really hot." I took a look at her in my rear-view mirror and her cheeks were rosy flushed and she looked like she was sweating a little. I pulled over realizing that I was in the middle of downtown and didn't have a thermometer with me to check her temperature. She felt plenty hot but she was wearing a fleece outfit and the backseat where she was sitting felt warm and a little stifling. I took her fleece top off, which left her with an undershirt and opened the windows and sat for a moment or 2 wondering what to do. My thoughts were clamoring for attention. "Should I go home and check her temperature? Shoot! I still have to go to the grocery store. Should I go to the grocery store and buy a new thermometer? Darn it! Either way, I'm a good 20 minutes out." That felt too long. I decided to call the clinic since we were only 5 minutes away and see if they could check her temperature. I was told, "Absolutely! Come on in." What a relief. So Aria, Rianna and I raced up to the clinic and had her temperature taken. 98.7. “ Phew! Aria wanted to go eat in the hospital cafeteria before we went grocery shopping so that's what we did. She was chipper and hungry. I was relieved but edgy. I don't know, something didn't feel right. I tried to put it out of my mind, but I couldn't completely. When things like this happen, I realize that the dread and the worry are always there and very much heightened under these kinds of circumstances. We had a wonderful day and although her cold symptoms remained, she was fine.

This morning was a different story. She woke up telling me that she felt yucky. "Uh-Oh!" This is never a good thing. I asked her if she felt yucky because she was hungry, which for the past few months is what that has meant. "No Mama, I just feel yucky." Shit! I was sunken. This was a drag and the worry wheels started to spin. She thought she was going to throw-up but she didn't. Then she complained that she "just didn't feel well." I was thinking about yesterday and wondering if her body was brewing something new. A sinking feeling started happening within me. I took her temperature and that was fine but she didn't look right and truly didn't look like she felt herself. We had to take Reo to school and Aria begged me to let her wear her pajamas in the car, which I did. I had implemented our old school rule, which is that on school days the kids are not allowed to watch the television. Aria was asking all kinds of questions about how we were going to spend our day together.
"Mom, what are we gonna do when we get home?" She was sounding rather energized and happy.
"Let's do some painting." I suggested enthusiastically.
"Idon'twanna." slurred from her mouth as if one droopy word.
"Let's play a game." I countered with equal bubbly delight.
She sharply replied, "NO!"
For some reason when I heard this, the image of a carrot top being clearly chopped off came to mind. I started to laugh.
"Mama.." she began in a sort of whimpery pleading kind of tone, "I just don't feel well and I want to take it easy and watch some commercials."
This is her word for cartoons. I conceded and told her we could watch one hour of cartoons. She didn't perk up per se, but I could tell that she was glad. We watched a few cartoons and read some books and played with toys. She had some snack-type food and some ice cream but did not have her normal level of exuberance. By 12 30 or so, she was ready for a nap. I put her in the big bed and Rianna in her crib. Aria, it seemed, fell asleep almost immediately. Rianna, on the other hand, played in her crib for a good 20 minutes before she finally dozed off. They both woke up around 2 pm, which was just in time to get ready to pick up Reo. When I went to Aria on the big bed and sat her up to have a drink of water, I noticed on the pillow was a big round sweat mark. She wasn't sweaty, or clammy nor was she hot but I took her temperature anyway, which remained normal. She felt punky the rest of the day.

By the time Doc got home around 6 o'clock, she was much warmer and began to writhe a little on sofa in the living room. We had been reading books for 15 minutes before Doc got home to create a calm environment, but the moment she saw Doc I think she felt free to let it all hang out. "I feel yucky!" she moaned. Doc took her temperature and it was 100.3, which is awfully close to that 100.4 temperature which means a trip to the ER. He was confident, however, that she was over-heated due to her fleece pajamas and the fact that she felt sick to her stomach. He decided to go ahead and give her evening medication that includes the 'don't fro up' medicine. He was giving her the meds an hour before her 'normal' time. I mention this because that thought never entered my mind. I hate to admit it, but there it is. I realize that I'm so stuck on the routine of evening meds at 7pm and morning meds at 7am with very little variation in between that I don't have the same level of confidence that he has. It never occurred to me that her feeling sick to her stomach would elevate her temperature. It never occurred to me that it would ok to go ahead and give her medicine early. It makes perfect sense, but that's not at all where I was in my thoughts. I had spent the day with her feeling up and down, watching her like a hawk, waiting for the bomb to drop. When her temperature was elevated my immediate thought was, "There it is! There's the bug that's been brewing for the past few days!" Doc wasn't willing to go there yet and I was so grateful for his knowledge and expertise. Once again, I saw his medical training prove to me that he can see a much bigger picture with many more connections than I could ever hope to imagine. I'm not at all trying to put myself down. This is simple fact. He is a medical doctor and knows inside and out how the body functions. I'm in awe of him.

Doc took her pajamas off and put her on the big bed under the covers with a cold compress on her forehead. He reassured me that if she has a true fever, in 15 minutes time, this cold compress would make no difference whatsoever. We proceeded to 'busy' ourselves. We exchanged a look that said, "I don't want to go to the ER on a Friday night!!" Finally, Doc actually voiced that and followed it with, "But, we would we go, if we had to." Yes indeed we would. But man, the ER on a Friday night with 3 kids waiting around in a hospital room for hours sounded really bleak! You might be thinking, "Well, Doc could take her and Julia could stay home with the other kids." Yes, this is true, but that's not how we've been working it. Aria gains a great deal of strength being surrounded by her whole family. Reo gains a great deal of confidence knowing exactly what's going on with his sister. It is so important to us to stick together. 5 minutes had gone by. I was puttering around aware that I was sort of pacing. I decided to go ahead and check and re-pack the hospital bag. It made me feel prepared. 7 minutes passed. I couldn't stand it. I went upstairs and peaked in at Aria. She was so cute in that big bed with a moistened pink bandana on her forehead.
"Hey, Mama, look at me! I look like Dorothy!"
I burst out laughing. She is such a hoot. We talked for a few minutes about why Dorothy had to have a compress on her head and how that differed from Aria's. The wheels were just turning and turning in that little girl's head. I know Doc wanted to wait 15 minutes, but 10 minutes had gone by and I couldn't wait any longer so I went ahead and took her temperature. Ah Shit! 100.7! "Now what do I do?" Do I tell Doc? I hadn't waited the full 15 minutes. This was such a mommy moment where I just couldn't stand it! I decided to putter some more and not tell Doc. I know..I know... I just couldn't deal with him giving me a hard time on top of everything else. That, and I just didn't want it to be true! Finally, the 15 minutes was up and Doc comes upstairs to check her temperature. I'm in the Fairy room folding laundry. I wait a minute and then go into our bedroom just as the thermometer was beeping. It was 99.3. I didn't believe it. "Doc, she didn't have the thermometer in her mouth right. It was sticking straight up. Would you take it again to make sure?" He smiled so patiently and agreed. I sat with her this time. 99.4! I know I must seem crazy to you but I spent the entire day with this child riding these weird waves. Is she sick? Is she ok? Is she getting better? Is she getting worse? Am I coming or am I going?

I felt so much relief! I didn't feel quite out of the woods but felt like we at least didn't have to spend Friday night in the ER. I read books to the kids and everyone was in bed by 7:45pm. Aria came into the big bed in the middle of night. It was 1 30 am when I couldn't keep my hands off her face checking her temperature. One side felt hot and the other felt cool. Her body felt warm but not really warm. Man, this is some edgy stuff! I didn't fall back to sleep for some time. She was sleeping peacefully and didn't have that radiating heat of a fever so I began to relax and finally fell back to sleep. We checked her temperature first thing this morning and it was normal. She still doesn't feel well and we are watching her very closely.

I'm not at all opposed to going to the ER or the hospital if we have to. What's so hard is not knowing and feeling like I'm teetering on a fence. I'd just like to be able to fall to one side or the other and relax there for a little while. This is where Doc is so good for me. His confidence is extremely reassuring. No parent relaxes when their kids are sick. Aria getting sick adds some additional layers to that stress and I'm still learning how best to cope with those new layers. Even though we are fast approaching the 9 month mark, it still feels new a lot of the time. That, and I just never want to take anything for granted.

I'm going to go ahead and send this off to you and ask that you keep Aria especially close. She's still very much on the edge. Right now she is napping in the big bed. Her temperature is slightly elevated but not at the critical point. We are keeping a close eye, trying to relax and let things be as they are. I'll keep you posted as always..~j