If I had to describe it now I would be left using words like numb, overwhelmed, scared, sorrowful, and dread but I wouldn’t be able to tell you why I felt that way other than stating the obvious.
I have no idea what possessed me to sit down and write all the details of our days. I suppose I felt compelled to let friends and family know and didn’t want to feel like I was repeating the story dozens of times while on the phone. I also think it enabled me to process it and take it all into my being on some deeper level.
To say that it was overwhelming is such a gross understatement even though it is entirely true. I had forgotten that up until Aria’s diagnosis, she had never been to a doctor for any kind of illness. She had never taken any medicine for so much as a sniffle. She was always in perfect health. But, in the span of 3 days, she experienced a spinal tap, a bone marrow biopsy, surgery with general anesthesia so a port could be placed where she would receive all of her medication and where blood would be drawn, chest x-rays, chemotherapy, IV fluids, and narcotics for pain to name just a few. Our world was upside down in an instant and there was absolutely no time to make sense of any of it. Suddenly we were thrust in motion down a path that was not of our design or making. Everything about our life, everything, came to a grinding halt. Life as we knew it was no more and yet there was this uncontrollable urge to hang on to it with all my might because I didn’t want to embrace what we were dealt. Who would? I had to, mind you, but I didn’t want to and I thought for a brief moment that I could maintain some semblance of our old life. It didn’t take me long to realize the impossibility of that and God that pissed me off!
I spent days in the hospital with Aria and the kids reading everything that was given to me. I felt like I was in some kind of crash course where the final exam and graduation was only days away. I had to learn a lot and fast.
It is no small thing to say that I don’t know what I would have done without Doc. He was able to interpret and translate virtually everything people were telling me. Doc has an understanding of medicine that most of us don’t. He’s a physician for heaven’s sake so having him around was my life-line. My mind was like a computer processing new data and my actions were robotic trying to find a sense of routine. There was little time for reflection and self-examination. That came later and it swept me like a tsunami.
I have made a few changes to the original emails I sent including correcting typographical and some grammatical errors, but the main body of the text remains intact. When I read these emails now they have no flow to them, which depicts so perfectly what those days were like. Even though time seemed suspended and reality was creating itself anew, I felt constantly bombarded by people, information, fears, thoughts, worries, stressors and the seemingly infinite realm of ‘unknowns’. These emails were sent to give people close to us some idea of what was happening and they reflect my understanding of everything I was told at that time. I read these now and it is all so vivid and yet muddled, too.
January 18, 2008
Subject: Aria Update
Hi everyone! I thought you'd appreciate an update from me personally. Your cards have been received and are taped on the door in Aria’s room. THANK YOU so much and PLEASE keep them coming. The opening of letters is a very big boost to Aria and Reo's day. Your emails and phone messages are HUGE for me. They have offered a great distraction and have given me a little sense of "normal" as we work to define our "New Normal" mode for the next few years. Activities for Reo are a bit of a challenge right now since he is getting to watch as much television as he wants and he's become an addict as a result. Tina gave me a great idea though and that is to save all these things, activities, coloring books, puzzles and what not and will keep them in a big box and pull something special out for either Reo or Aria whenever. They will all come in so handy down the road when things get really, really hard. That brings me to updating you on Aria.
Today January 18, we got some good news and that is that her spinal tap yesterday revealed NO trace of leukemia cells in her spinal fluid. This is huge and is one less hurdle to jump and it also contributes to favoring a good prognosis. Aria had a really good day today. (this is all relative mind you) She had a rough night and was up every hour or two in pain. Some of it is post surgical stuff and her bones ache. She is on IV fluids, which fill her bladder, giving her a painful urgent sense of needing to pee. So when she wakes up she's in a panic. Once she does, she is calm again. We’re learning how to move her around to minimize her discomfort but her bone pain is severe and is now in her legs. Today she tearfully told Doc, "I've lost my might" referring to the fact that she feels weak. I'll add that she hadn't eaten much since Tuesday so it’s no wonder. This morning was a little sketchy, since she was still coming out of the fog from yesterday’s surgery to put a port in her chest where she will receive all her current and future treatments and the spinal tap she had. By the way, the spinal taps and the bone marrow biopsies are now done with her completely asleep. It isn't general anesthesia but something else they call ‘conscious sedation.’ They also add a numbing cream to any place where she's going to get poked so she doesn't feel anything at all. VERY nice!
By afternoon she was starting to perk up. She had morphine in the morning to manage her pain but had gone the entire day without any pain meds...At 5pm we had a pizza party with rootbeer. She ate and drank and was able to keep everything down. By 5 30 she needed pain meds but tolerated that process well. She also got her first chemotherapy treatment this evening. It consisted of one med that begins with a V and a steriod "Decadron", which I was told was worse than the chemo med. Apparently, it makes kids very grumpy toward the end of the overall treatment session, which in her case is daily for the next month!
She's taking other medications too to help balance side effects; stool softeners for constipation and another med to help break down acids that build up in the process of the leukemia cells dying off. All very straightforward and Aria took it all in stride. No problems. The good thing about this regime of chemo is they are not zapping her with the big gun chemo drugs. There may be some nausea but the steroid really helps boost the appetite so they don't typically see nausea until much later. Fatigue is often not a huge issue either. The steroid is a problem because of mood swings and irritability especially on procedure days, when she'll have to have a spinal tap and won't be able to eat but will be voraciously hungry. She'll be pissed. But now that we know that we can anticipate it and use all of our creative juices to distract her. In any case, I took a picture of her first of many chemo treatments and it was very, very simple. We then played in the playroom and had many visitors. When we left at 8pm she was calling me a "poop head and a butt tree" so I say she was in good spirits!
We met today with one of her Oncologists Dr. Angela (I can’t seem to be able to remember her last name!) and the other is Dr. Judy, with whom Doc interned at Children's Hospital in Seattle 11 years ago. It’s been an amazing reunion with her. Dr. Angela very gently and tenderly walked us through what our lives are going to look like for the next 2 1/2 years but more specifically the next 3 months. It is going to be nothing short of RIGOROUS! LOTS AND LOTS of appointments and procedures and treatments that will all take place on an outpatient basis. I've decided that one of my purposes in this experience is to somehow define the psychology of waiting. It will be a lot of waiting. Our patience will be tested, our creativity and our use of time to generate goodness will be tested regularly, too, but I'm certain we are equal to the task. Dr. Angela mapped it all out for us and it is very straightforward, very easy, very manageable...on paper! We are in a place right now where we are truly living one day at a time and that will have to be perfected in some sense in order to stay focused on what we have to do for months to come. It is so completely reassuring that Dr. Angela and Dr. Judy are both so positive about Aria's prognosis. I can fully admit that I'm in complete denial about the fact that she is fighting a fiercely deadly disease. So fierce and so wicked that only 50 years ago or less 100% of the kids who had it died. Now we're talking 80 - 90% cure rate. This kind of cancer is the kind that so often brings a success story to their experience as physicians. I know that a horrific outcome is out there but I refuse to go there...
Aria has several major challenges to face throughout. Her biggest challenge will be keeping infection at bay. When a fever sets in, it means she's hospitalized with IV antibiotics and we can just count on that happening. The other challenge for her will be muscle fatigue and weakness, which is temporary but can be really hard on her psyche. We'll simply have to cross that bridge when we get there. There are many, many more challenges but so often those are the unknown things that crop up as a result of what she's experiencing.
We are planning to be in the hospital for another 7 to 10 days. It could be longer depending on how well she does with her treatments. Her immune system will be suppressed here in the next few days so we'll just have to wait and see. It isn't uncommon for some kids to stay through the first month. We're just going with it. Doc and I are dividing and conquering right now. His job is the hospital front; keeping everyone on their toes, asking the questions, gathering the data, getting the information, supporting Aria medically, and making sure I have a good 3D understanding of what's going on. My job is the home front; Reo and Rianna..going to school, keeping our routines and maintaining some normal time for them. It is working really well for us right now. We have so much support. You just wouldn't believe it. The generosity of people is just beyond the beyond. I've been thinking about the families who come here alone, with limited resources. We are just so lucky!
So right now, I'm feeling pretty good. I'm up and down with my emotions. There are all kinds of new triggers that make me cry or make me laugh. I feel really strong though and confident facing this next week or 2 but when I start thinking beyond that, I get anxious. So I breathe and I come back to today and tomorrow and reflect on yesterday and I'm calm again.
I never imagined I'd be here. This was my greatest fear as I expect it is for all parents. It is so strange to walk the halls and see little bald kids going through whatever they’re going through and know that that will be Aria in the next few months. It’s heart wrenching and very real. Yet, I have great hope. I am simply not allowing any room for negative outcomes and I feel like even if something happens that we didn't want or expect that a Plan B will be put in place and all will be well again. I may be horribly naive or completely in denial but I don't think so. I feel like I'm ready to face this new life and knowing that Aria will be well again makes the journey so much easier. We've come through the really hard part of shock and grief and profound sorrow and fear. Now we have answers, we have a road map and a list of things to expect and things that we'll need to do. We've been empowered by professionals who do this for a living and have expressed nothing but optimism. With all of this, we feel like our new tool belts for coping and dealing with our new life are getting more well equipped. We're going to be ok and you needn't be afraid. That is what I tell myself!
Please keep the letters and emails coming and I certainly hope this has brought you closer to our experience. I will gladly update you when I can and I would encourage you to spread the word by forwarding this email to anyone else who might be interested in knowing about Aria. From the very bottom of our hearts, THANK YOU so much for all the warm wishes and prayers. It has meant everything to us and it is what cushions us and lifts us to face the day.
My love to you all, ~j
This is Aria falling asleep after a very long diagnostic day.
I am so hideously weary I can barely muster an automatic smile for the camera.
Aria perked up and was able to eat and enjoy bites of a giant lollipop. This was a moment to celebrate in a day filled with horrible moments and wonderful moments.
January 20, 2008
Subject: Saturday January 19, 2008
I want to begin this bit of journaling by saying thank you for your understanding when I quickly have to cut you off while on the phone. Doc and I are using our cell phones constantly now and I just don't want to miss a thing. It feels icky being abrupt but I so appreciate your understanding. It often seems like things happen along the way and I don't always get to call back for a quick update and I humbly apologize for that. I know some of you must be on edge waiting to hear from us and I'm sensitive to that and will work to find a better rhythm for giving quick calls to say no news or here's a quick summary, etc. I know information at this point in time is so important. I also realize just how helpless you are feeling and I would too if I were on your end of this spectrum. I want to be fully present to you when you call so it is a matter of getting some finesse to this new routine. At the end of the day, when I come home and after I've tucked in Reo and Rianna this writing has been cathartic and, I hope, helpful to you. I am uninterrupted at this point and I'm in a place where I can truly process the events of the day. There is a website that I may hook into to journal this process it’s kind of like a blog but right now that is not even on the radar of things to do!
Aria had a good day today and she even had some great moments. Doc told me this morning that she had a good bit of rest from about 3 30 am until 7am, which was huge for them both. She ate part of a turkey sandwich for breakfast, which stayed down, watched a movie and was in really good spirits. I called this morning and talked to her and her voice was robust and energetic. It was so uplifting. However, within an hour she crashed a little complaining that her legs hurt, which Doc thought may be a direct result of her chemo. The complaint isn't a fussy whine nor is it an all out scream. Rather Aria has developed this sort of primal squawk and will squawk and squawk with her eyes shut tight and her face grimacing. She rubs her legs and keeps them bent and tucked near her body but is constantly moving them because she's so uncomfortable. So she's squawky, horribly restless and impossible to understand. It is completely disconcerting. When I've experienced this with her she doesn't want to be touched, so soothing her in conventional ways is out of the question. We are challenged to come up with all kinds of new skills here. Doc said they finally got her calmed down with some pain meds and she went to the bathroom and she was much, much better. We arrived on the scene around 10 30 this morning, which was nice. Rianna had a nice nap at home and Reo got some nice play-time here too. I folded laundry and did some other basic chores. Aria was sound asleep when we arrived, which was great. We settled in and within an hour Doc left for a much needed and much deserved break. He was heading to the farm to do chores and catch up on "stuff". The kids and I proceeded to have an amazing day. Aria was in great spirits the entire time...great spirits all things considered...she had a few bumps in the road but nothing over the top at all.
We went to the playroom together, which was a HUGE adventure. Imagine this; I'm carrying Aria in one arm and Rianna in the other while Reo is in front of us pushing Aria's IV pole. It was quite the scene. Unfortunately, our time in the playroom was hard and I don't have the confidence right now to do it again all by myself. The problem is that Rianna is just all over the place. She can climb on these little tables and get stuck. I fear she'll fall off. She gets tangled in Aria's IV cords when she comes around to the activity table where Aria likes to make puzzles. Aria wants to get up and move around as if she isn't tethered to a pole and she can't. I don't have the confidence yet to follow her with the pole and give her more space, not to mention that Aria right now really doesn't have the strength to walk around much. Then there's Reo who is left to amuse himself. It was good for them to get out of the room for 10 minutes or so but I was completely frazzled by the time we left. When we left I picked up Aria, and let Rianna walk, who didn't want me to pick her up. Well that little munchkin has a mind of her own so she didn't want to follow us. I planned it all wrong but simply didn't anticipate that she would want to wander off on her own. As I write that I realize how stupid I am! So anyway, I'm holding Aria trying to encourage Rianna to follow but she wants to go up these little steps. I'm completely stuck. I don't feel comfortable putting Aria down, because she's so weak and I'm afraid that her IV cord isn't long enough if she has to sit on the ground for a minute. I can see Rianna is getting stuck on the stairs (there were only 2). I call to Reo to come help and at the same time I call to a nurse to help and in that instant Rianna climbs down one step but misses the other and SPLAT! Face plant!! Bummer... I took a deep breath. I asked the nurse to take Aria and I picked up Rianna who calmed down quickly. The nurse, meanwhile, asks Aria if she can walk and Aria nods yes and the 2 of them WALK back to the room together! It was wonderful!
I think these are the little things that will add up along the way making this so challenging at times. Another thing that I'll be perfecting that will be easier once we're home is the bathroom scene. Rianna is so fascinated to be in the bathroom with anyone and everyone. So imagine if you can, I am carrying Aria into the bathroom with the IV pole and here's Rianna trailing right behind, the little stinker. Well, she just has to be in the thick of things, so I'm trying to make sure she doesn't get tangled while I watch Aria to make sure she pees in the potty hat at the same time I’m trying to distract Rianna so she doesn't get her hands in the toilet or pull the toilet paper or eat the soap or trip over the shower, so on and so forth. It is a little breathtaking and at the same time, it’s hilarious because it is so REAL!! This is such real life stuff and I find myself sometimes feeling like I'm an outsider looking in and it’s truly amazing!"
Aria also introduced us to one of MANY power struggles today. She had to take some medicine (a stool softener and one other that I can't remember.) The stool softener is mixed in a drink and she can nurse it over several hours. The other medicine is a pill that she keeps under her tongue until it dissolves, which she did yesterday with no problem. Today, she didn't want to do either. Deeeeeeeep breath...because this is going to happen all the time...she will get so sick of this and refuse and refuse and refuse and we are going to have to force her but empower her at the same time. She simply doesn't have a choice and she has no control and that must really, really stink! So, I tried to think of a way to get her to take her drink that would make it seem like she was in control. I decided to give her a butterfly sticker and I asked her to place it somewhere on her cup. She would then have to drink to the top of the butterfly and then she could have a treat. Ice cream was the bribe of choice today. She told me that she'd do the other pill first, which was awesome. She decided and she took control and of course she did it beautifully. Then she placed her butterfly on her cup, which meant that she had to drink about a 1/3 of her drink, which was GREAT! It’s a big drink, let me tell you and for someone on as much IV fluid as she is, she's just not thirsty! I was so proud of her. This is the kind of stuff we are going to be dealing with for a long, long time and it’s coupled with the fact that it’s very hard that it’s happening to this little 4 year old, our daughter. So my focus now is to keep empowering her, keep giving her opportunities of control and decision making and I hope that will be healing for her in some way.
Last night Doc met a family from Bosnia whose 14 year old daughter is here with kidney failure. He gave them some fruit and told them about us. We don't know their whole story but we do know there's a lot of them...big family gathering for sure! This afternoon they were all huddled in the Ronald McDonald community room and I gave them the rest of the fruit basket. One of the women asked me if I was Dr. Layton's wife and she hugged me and told me how sorry she was to hear about Aria and gave me a little gift to give to her with a balloon. I was completely blown away. This complete stranger whose best friend's daughter is sick beyond words has the capacity to give a sick child she's never even met a gift. People are so profoundly good. She gave Aria a glass guardian angel. I know..it's breathtaking isn't it?
I'm learning so much. My spirit is being massaged in ways I could never have imagined and I am stronger and clearer as a result.
Doc called to tell me that Aria is resting well. They've had a good evening so far. She walked back from the bathroom to her bed all by herself.. HUGE! She stayed in good spirits. Let's hope it’s a good night. Doc is living his life right now in 3 hour increments and it’s hard. He has a headache, something he NEVER experiences. He's tired but like Aria, he's a warrior. My world is much different...easier in many respects....but we are still focusing on playing to each other's strengths and talking about what we need and so forth. I'm confident in that realm.
It was a good day and something I will plug into my psyche and draw from when the days are not so good. For now, I head to bed with a gentle smile, a calm mind and a willingness to go at it, head on, tomorrow!
I love you all VERY much! ~j
Henry the blue puppet came with Krista, a Child Life Specialist, to tell Aria and the rest of us all about what it's like to get ready for surgery and have a port placement. He was enchanting!
Henry taught us about surgical masks and hats and gloves. He wanted to make sure Aria wasn't scared by all the new faces she was going to see in different kinds of costumes! He was wonderful fun.
This is Aria shortly after her surgery with her port accessed and covered. She's completely exhausted.
The healing powerful of rest is really quite beautiful.
January 21, 2008
Subject: Aria
Hello everyone! First and foremost we are well. Lots of good news...lots of challenges too, but we're learning and coping as best we can. Let me say that this writing process is extremely therapeutic for me. It is my way of decompressing from the day. I won't always be able to write, but when I can it really does help me wrap my ahead around the things we were able to do and the progress we were able to witness.
Thank you for all the emails, cards and phone calls...keep them coming! They are so incredibly helpful. You have no idea. I know there's some sensitivity about not wanting to intrude, not wanting to bother us in case we're in the middle of something etc. Let me be loud and clear here.. If you want to call, PLEASE DO!! If we can't talk to you, we will either not answer the phone or we'll tell you straight away that we have to go. I think most of you have already experienced some version of that already. Please, don't sit there anxious, wondering about how we are. If you need to connect, feel free!!
Monday January 21: Praise Martin Luther King! His spirit of tenacity and perseverance has been with me all day long. His willingness to stay the course, no matter the consequence gives me a great sense of empowerment and strength.
Aria had a very rough night last night. She has not pooped in 6 days and has been taking a medicine to help with that. We switched the medicine yesterday because the first one was mixed in a big glass of juice, which she simply wasn't able to handle. She's been receiving IV fluids around the clock so she has no sensation of being thirsty since she is so well hydrated. Incidentally, they do this so that the kidneys don't have to work so hard filtering out all the leukemia cells that are dying as a result of the chemo. We call them silly cells and I have mentioned to Aria that they showed up in her body uninvited and they are unwelcome so she is taking lots of medicine to get rid of them! Aria couldn't drink all the juice and get that medicine down. Poor thing. We switched it but one of the side effects is cramping. Soooo around 3 am, she woke up in a panic because she felt like she was going to poop in her pants. Accidents of any kind for Aria are extremely traumatic. She just hates it! So this urge to poop came upon her suddenly and she was cramping and scared and nothing was coming. Doc said she just kept yelling, "I hate this!!" She was very uncomfortable and just had to ride it out. Nurses came in around 4 am to take vitals, give meds give her a good looking over. Aria fell asleep for a short time after that but was awake again around 5 am with the same feeling and same screaming. Doc, of course, was with her and subsequently wasn’t able to go back to sleep, which meant that he got about 2 hours of sleep last night. This is the 7th night in a row, by the way. Aria tried to poop but nothing really happened.
A few hours later she tried again, but this time a Social Worker showed up and wanted to talk to Doc about some information she had left us that he didn't know anything about. We've received at least 5 three ring binders from various organizations! Doc was completely distracted with Aria, while this woman was talking to him. Imagine if you will that he's sleep deprived, so in the process of carrying her to the potty her IV cord got stuck on the bed-rail and her port line plug popped out. It was just one of those things but it’s amazing that this person couldn't read the situation well enough to know that "now wasn't a good time." Aria finally went to the bathroom a little and felt better. She ate some breakfast and settled in and rested watching a movie. We showed up to her room shortly after 9 am. It was my turn now to witness her distress. Again, that urge came on and she was cramping. All this and she had to face an in room sterile procedure to put in a new plug for her port. This is called 'accessing' her. So the nurses are prepping the area while I'm in the bathroom and Doc is playing with Reo and Rianna and keeping them distracted. It is all working amazingly very well. Aria and I are in the bathroom and it is taking every ounce of strength I have not to be in tears. She is in agony. She is screaming at the top of her lungs...just screaming bloody murder and I'm encouraging her to. She’s screaming variations of "HEEEEEEEEELP!!! or HELLLLLLLLLLLLLLLLLLLLLLLP! SOMEBODY PLEASE HELP ME!!" over and over and over and over again. She is trying to catch her breath. She is saying ouch ouch ouch ouch ouch ooooowwwwie!! She's so distraught her eyes are closed and I'm just hugging her while she's sitting there on the potty. Who would ever have known that this would be one of the challenges that would need conquering? FINALLY, we have a little success and I can tell that the cramping has subsided. She just collapses in my arms and we hug and I soothe her with gentle reminders of her strength and her courage. Relief sets in and she's ready to get to her bed. It is at this point that I realize that I am completely calm. My heart is not racing. I am not sweating nor am I shaking. I am completely clear and calm. I have no idea how that came to pass. I put her back on her bed and she had to be accessed. It was here that Doc and I switched. 2 nurses and Doc were holding her down and holding her hands. It is a super quick procedure and a little poke, which she didn't feel because of a numbing cream they use. She was terrified though. The procedure, the newness, the people, everything has this energy of being too much. Fortunately, it was extremely straightforward. However I couldn't help but wonder about the lens of a 4 year old. What is she processing? She was again wailing, "Help me!! Daddy, HELP ME!!" It was here that I left the room with the baby in my arms and burst into tears. I'm in tears writing about it, remembering it. The poor thing! HOWEVER, it was over in about a minute or 2 and there was a nice ice cream sandwich on the other end and it really did help!
A few hours later she had to have BOTH legs poked with a medicine I call it Pegasus I know that's not right and I'm not sure what it is other than part of the chemo regimen. It sucked as you can imagine. She had the numbing cream on both thighs for an hour so she didn't feel a thing. She didn't even flinch when the shots went in, but the process once again, the loss of control for her, the not understanding why this is happening, and the fear. It is all so overwhelming. She was great though and this time Hershey's Kisses were waiting for her. This was the morning ride!
Doc left before the leg pokes for a much needed break, not to mention that we had a snow storm with heavy winds that left huge snowdrifts. Last night Amy buried her car in a drift trying to drive down their lane after Doc had said not to and to wait until after he plowed. He buried the tractor in the process of trying to get her out. She got out but since the tractor got buried the road didn't get plowed. He was so pissed last night but this is life! This kind of thing happens. So today he wanted to get chains for the tractor, dig it out and finish plowing the lane so Tata and another neighbor could get out. Doc was able to do all of this and I think being outside and getting some physical exercise really helped. When he arrived at the hospital this evening he was completely rejuvenated.
After our morning ride, we had an AMAZING day! Aria was pretty much wiped out but her spirits were high and we played and joked and ate and watched movies. Reo and I were even able to do a bunch of school activities while Aria and Rianna took a rest. It was lovely. Just after lunch, our Oncologist arrived for rounds and had nothing but GREAT news. Aria, for the second day now, has no trace of leukemia cells in her blood. We could see some pop up here and there in the next few days but it’s unlikely. Still, it is very good news and means that Aria is responding very well to the chemo. We know that she has to continue with the chemo over the long term because leukemia cells hide and come back with ferocity, if we don't. Furthermore, we know that we don't have equipment sensitive enough to measure the leukemia cells that are lurking still in the body. Hence the long term chemo regimen. Regardless, it is good news. Her blood counts continue to drop as is expected since the chemo attacks all the healthy cells too but they're holding their own. Right now it’s kind of a balancing act where the chemo is wiping out the good and the bad cells and at the same time the body is regenerating healthy cells again. The hope and the goal is that the body will regenerate enough good cells in time for the body to sustain itself and not need a blood transfusion. This would be a very rare thing...NOT to need a blood transfusion. But she is encouraged that Aria may just slide by that little hurdle. We'll see. It all depends on how she's feeling. Aria has been taken off IV fluids and they have stopped a couple of her medications; the stool softener and the medicine that helps reduce uric acid build up as a result of dying leukemia cells. Really good stuff! The other bit of good news is that her doctor is thinking about letting us leave TOMORROW or the next day! I was floored!! Aria is doing that well!
So tomorrow, we are meeting with an outpatient care coordinator who will walk us through exactly what we're supposed to do for the next several weeks, months and years. Aria has a spinal tap and bone marrow biopsy on Friday but it will be done as an outpatient with a full check up then. After that we go home again, obsessively watch her for fevers and bring her back the following week for more procedures and treatment. I’m not sure how often or when all the treatment and procedures will happen after that. I'll learn all that tomorrow. I'll also learn about pain management, and medications and so forth. I think all of her chemo meds and steroids are given to her in clinic and NOT at home but I’m not certain at this point.
So yeah, Aria is a champ and is doing well and we are all about to learn what our new lives are going to look like. Doc and I are surprisingly calm about it, scared to death too but calm. You know, you just do what you have to do and I'm convinced the trick is to roll with it. Doc and I have discussed many times how this process will test our patience and our sense of flexibility time and time again.
Reo meanwhile, is also a champ. There is so much advocacy stuff out there for siblings and Doc and I are very aware of Reo..."the shadow survivor". Today, he wanted to play in the playroom and I felt very stuck because I didn't want to leave Aria alone while she was sleeping and wake up alone or with a stranger and at the same time Reo is not allowed to be in the playroom unsupervised. It was hard because Reo needed this time and I so wanted to give it to him. This is a challenge. Suddenly the social worker, who read the morning situation so badly, appeared and we talked. I asked her about how I would go about getting a volunteer to come and take Reo to the playroom. She suggested that he go play in the Big Kid room on the 4th floor, which is a play area for ‘siblings only’ that is also well staffed. They were having some big party up there. The social worker volunteered to bring him there. So I asked Reo if he wanted to go and the next thing I knew, he put his hand in hers and was ready to head out the door! "Uh, excuse me!! But you'll need your slippers on and you need to hug and kiss your mama!" I reminded him. So he did and away he went. He came back an hour later with a couple of volunteers and a mini marshmallow igloo he had made, a cookie and a HUGE smile on his face. He spent the rest of the day playing with balloons and toys. It was great. Reo has many gentle hands wrapped around him. We are also enrolling him in programs for siblings too so that he never gets left out. It is very, very nice.
Rianna is a total disaster area. My God!! She has been having so much fun playing in the garbage. It is just her height and she gets into all kinds of things. UGH!! She is our comic relief. She is adorable, flexible and sweet. She's just great.
We are truly living one day at a time, sometimes hour to hour as you can appreciate by this morning's description. I don't know nor do I fully understand how it is working, but it is. Doc and I are working like a well oiled machine. Our life has simplified itself and it has only one focus right now and everything else follows along. We expect each day to bring ups and downs. I find myself in the evening taking stock of the day, reflecting on what went well and what needs some tweaking. It gives me such comfort to face the next day with freshness and clarity.
I hope this brings you all up-to-date on our lives. it is so, so hard and yet here we are doing it! I can tell you right now, it would be that much harder without all of you! So, thank you again for all the prayers, thoughts, well wishes....
All my love, ~j
Reo playing with Rianna, which is something they did for hours each day.
I feel obliged to say that in light of how tragic and shattering this experience was even in those first few days, we knew we were lucky. We could already grasp that ‘things’ could have been a whole lot worse and they weren’t. The threats were ever present and the anxiety that is partnered with what isn’t fully known and understood was also constant but we were able to find solace in knowing that there was a spectrum of severity in this new world of cancer and we were in a safer zone than a lot of other people. Still, we were strangely consumed by this new world, our view narrowing with every passing day. It was lonely and daunting despite how people reached out to us. It was hard to know how to feel and where to go with those feelings.
It would take me several days to find that place where I felt safe to pour out my heart and look at myself in the mirror and say, “This is life for you now. What are going to do?”
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