tag:blogger.com,1999:blog-52115980186907941262012-02-16T02:21:13.687-08:00This is a live journal about my daughter Aria. This is the story of childhood cancer, namely leukemia. This is a story about our journey and about all those who walk parallel to us and intersect with us along the way. This is my story but I'm convinced you'll find that it is your story too.julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.comBlogger1131100tag:blogger.com,1999:blog-5211598018690794126.post-30426458357490273492011-03-06T08:12:00.000-08:002011-03-06T08:14:37.629-08:00

This is the essay that goes with the video recently published. Here it is in its entirety. “YOU JUST DO”“What would I do if something happened to my child?” These words are often only whispered in the safety of a quiet mind. Yet they are universally understood as a storm of fear and worry that rages in the depth of our protective mothering instinct. We ask the question because we’ve seen the

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-79678734332510644882011-03-03T19:25:00.000-08:002011-03-03T20:11:54.501-08:00

This is a video that was taken at a luncheon fundraiser for the Children's Foundation at Sacred Heart Children's Hospital. We were the featured family. I wrote the script and did the voice over work. It was our public debut and a most extraordinary experience. It's our story in 6 1/2 minutes.

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-69932174021437609292010-02-02T13:16:00.001-08:002010-02-02T13:16:26.853-08:00

August 31, 2009Subject: Aria’s August follow-upI just want you all to know that despite being surrounded by what seems to be insurmountable suffering, we continue to be blessed. We continue to have light. We continue to take steps forward in a strange but glorious way. We continue to have hope and I say that not because I believe it or even understand what it means but because it's what everyone

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com1tag:blogger.com,1999:blog-5211598018690794126.post-49283372715640914422010-02-02T13:14:00.002-08:002010-02-02T13:15:10.900-08:00

August 20, 2009Subject: Aria’s August Clinic Appointment (this is super long!)It was Tuesday August 11, 2009 at 8 50 am. Aria was schedule for her monthly lab check, examination with Dr. Trobaugh, and vincristine chemotherapy. This kind of clinic visit celebrates almost to the day when Aria began her Maintenance part of treatment, which was August 1, 2008. Aria has had this kind of appointment 12

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-41993593934968088712010-02-02T13:14:00.001-08:002010-02-02T13:14:24.959-08:00

August 16, 2009Subject: Aria’s summer so far…Following on the heels on "my silence" is a strange thing. I don't know how to avoid repeating myself at this point. But allow me, if you will, to highlight some of our summer--the good and the bad.The last time I wrote about Aria's clinical status was WAY back in June, just before her graduation. We'd been dealing with fluctuating ANCs that made me

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-22681875267668649212010-01-31T14:08:00.001-08:002010-01-31T14:08:31.508-08:00

August 13, 2009Subject: my silenceMy dad wrote an email several days ago letting people know that Aria had been taken to the ER. He mentioned how busy we'd been in recent weeks with our Georgia trip as well as beginning a large remodeling project to 'Old Henry', our beloved farmhouse. I couldn't help but wonder if he mentioned these things as a way of offering explanation about my silence for the

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-12055098218892322382010-01-31T13:50:00.001-08:002010-01-31T13:53:07.261-08:00

Those Lazy Days of Summer!!!August 1, 2009Subject: Aria came home!For the first time ever, Aria went to the ER with a fever and didn't have to be admitted! They accessed her port and drew some labs, which revealed a spike in her white blood cell count, which is nothing more than a healthy indication that her body is fighting an infection. This also meant a decent ANC so no need for an admit, YET.

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-82203734456750602832010-01-31T13:49:00.000-08:002010-01-31T13:50:08.805-08:00

July 31, 2009Subject: A summer ER trip!I know you haven't heard from me in a long time. I'm well aware of it and I will write about what we've been up to. But for now, let me tell you that Aria is off to the ER. Yesterday I took her to the ER for what I was pretty sure was swimmer's ear. Sure enough, she has an external otitis in her right ear for which she was prescribed medicated ear drops. She

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-42135992104737084602010-01-30T19:37:00.001-08:002010-01-30T19:50:15.954-08:00

June 16, 2009Subject: Aria’s graduationI know I left you hanging, wondering " Did Aria get to her graduation?" After her whole clinic appointment and her counts being down, we wondered whether it was a good idea as well. These kinds of decisions are difficult and aren't made lightly since the consequences can be significant. Still, the healing power of participating in life is immeasurably

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-64891753712623581302010-01-30T19:36:00.001-08:002010-01-30T19:36:39.517-08:00

June 11, 2008’Subject: Aria’s June ClinicWhat a weird few weeks. I wrote about a magnificent oak tree back on May 28, 2009. I was struggling with negativity like a bit of medieval iron chiseled, thick and weighty. I couldn't get rid of it. It has been with me since weighing heavier and heavier. However, as I write today, I'm free of that burden but before I tell you about it, let me tell you

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-54733819952546524222010-01-30T17:44:00.002-08:002010-01-30T17:45:36.860-08:00

May 28, 2009Subject: Aria went back to school!!The reunion was magnificent. Everyone was so thrilled to see her. There were even a few happy tears. Aria has been out of school for a month if you can believe that! She broke her leg on April 29th and I know what you're thinking. It's been a month already? It really has and luckily it has gone by pretty fast.Aria went to the clinic on Tuesday for a

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-45207088249863716672010-01-30T17:44:00.001-08:002010-01-30T17:44:35.329-08:00

May 20, 2009Subject: 2 more weeks to go!!Aria never ceases to amaze me! She has spent the last 2 weeks healing. She's been so content to be moved from one couch to another only wanting to lie there and rest. She hasn't wanted to color or paint or craft or even play with toys. Her spirits have nevertheless remained high. She has complained a few times about her cast 'not being fair' and just the

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-61505001033351427512010-01-30T17:42:00.000-08:002010-01-30T17:43:48.507-08:00

May 14, 2009Subject: Aria’s May clinic appointmentMay 11 2009, found us back in clinic for a lab check, chemo and an examination with Dr. Trobaugh. It was 8 30 in the morning and already the clinic was busy with a mixture of people I know well and those I don't know at all. My heart is heavy knowing families every single day all over the world are touched by the brutal hand of cancer. Aria found

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-57036993851354011912010-01-30T14:02:00.001-08:002010-01-30T14:07:22.092-08:00

Earlier in the morning I had sent an email titled "A Weighted Spirit" and it basically detailed the intensity of this journey. It was a heavy email and although I was feeling heavy when I wrote it, I felt lighter and liberated after having sent it. Later in the evening, we went to Reo's baseball game and Life threw us a curve ball. Aria broke her leg! What follows is a series of emails I sent

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-16185790481863812982010-01-30T13:58:00.001-08:002010-01-30T14:02:01.923-08:00

April 29, 2009Subject: A weighted spirit2 weeks ago (April 13th and 14th 2009) Aria had her monthly examination with Dr. Trobaugh followed by a spinal tap. The exam happened on a Monday and the spinal tap was the following day. It seems like ages ago. Yesterday (Monday April 27, 2009) Aria returned to clinic for a lab check to see if the increase in her chemo had created any significant shifts in

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-61886315854051539152010-01-27T13:49:00.000-08:002010-01-27T16:09:13.524-08:00

March 30, 2009Subject: A Slice of HeavenHeaven isn't a place to which one ascends. It is a state of being that never ceases to exist but finds itself obscured by Life's infinite realities. We are often unable to access heaven here on earth so it is no wonder that we look for it outside and above ourselves. However, every now and then we are gifted a glimpse, a reminder that heaven is present,

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-48594587913949789152010-01-27T13:48:00.000-08:002010-01-27T13:49:24.157-08:00

April 11, 2009Subject: Aria’s loose toothJust the other night I was helping Aria brush her teeth. We have to be very careful and diligent with her dental care because the chemotherapy can have some pretty adverse effects if we're not on top it. She is seeing a dentist every 3 months and so far things are going well. The other night, however, I was brushing her lower teeth and she uttered suddenly

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-29160885044400412632010-01-27T12:34:00.000-08:002010-01-27T13:56:09.486-08:00

March 21, 2009Subject: March Hospital ExperienceEvery hospital stay stirs a cauldron of emotion within me that for the past few months has been pleasantly simmering untouched. Driving to the hospital forces me to face all the contents of this bubbling brew that can splatter and burn with shocking surprise. It is never an easy concoction to sample. Reo asked that we park on the pink level in the

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-432471836709022772010-01-13T14:00:00.002-08:002010-01-13T14:02:27.533-08:00

March 14, 2009 (pm)Subject: AriaAria remains in the hospital. She's not well at the moment. Her fever never broke and spiked to 102.3. One time when she was getting some tylenol, I think the nurse pushed the medicine too rapidly and this caused Aria to gag and then vomit the entire contents of her stomach. Needless to say, she didn't have much of an appetite for the remainder of the day. I'm so

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-89852662455367145402010-01-13T14:00:00.001-08:002010-01-13T14:00:49.324-08:00

March 14, 2009Subject: Aria is off to the ER!Aria's temperature was 101.8! Yikes. She and Doc left a few minutes ago and they'll call me within the hour to see if she needs to be admitted, which I'm pretty sure she will be. DRATS!Here's what happened: It all started last week when Rianna had a green runny nose. She never ran a temperature and her runny nose lasted a few days. No one else got sick

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-53385434708353376622010-01-13T13:59:00.000-08:002010-01-13T14:00:07.493-08:00

March 5, 2009Subject: Reo’s AwardA few hours ago, I received a phone call from the Chase Youth Commission letting me know that Reo is going to be awarded with the Chase Youth Award for Courage! He'll be receiving a letter in the next few days letting him know that he's been nominated but I've been asked to keep it hush-hush that he's actually won. They want that to be a total surprise at the

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-42485953537003489552010-01-13T13:33:00.000-08:002010-01-13T13:34:07.424-08:00

March 3, 2009Subject: Aria: It’s all goodAria had a lab check today. We simply wanted to know what her counts were in order to determine whether we dial up or down her medication or keep things as they are. I have a suspicion that this will be our course for the remaining year or so of her treatment. I've probably eluded to this and to you it is more than likely already obvious but it's funny,

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-78932485033450418472010-01-13T13:26:00.001-08:002010-01-13T13:26:36.111-08:00

February 27, 2009Subject: A Triumph for Aria!I just wanted you to know that Aria, for the first time in 14 months, was able to go to school every day this week! It was Dr. Seuss week so every day was a new theme requiring a new costume of some kind. It was so much fun. She not only had the energy to go but she had the desire! This is huge for us as you all well know.I'm sitting here just

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-56629658991004450732010-01-13T13:21:00.001-08:002010-01-13T13:21:40.671-08:00

February 24, 2009Subject: RealizationThis is a totally self-indulgent email. Consider yourself forewarned..It's taken me several days to write and was initially inspired by something other than what it has come to now, in this moment, to mean to me. You see, I had this overwhelming urge to get this out but didn't fully understand why and so I hesitated filling myself with doubt and insecurity. I

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-19666588149782907612010-01-13T12:57:00.000-08:002010-01-13T12:58:43.370-08:00

February 18, 2009Subject: Aria’s February Clinic and chemoYesterday, February 17, 2009, we went to clinic for Aria's monthly vincristine chemotherapy and an exam with Dr. Trobaugh. As you know, we are still trying to adjust her medication so that her ANC is balanced between 500-1500. We increased her daily 6MP chemo to roughly 50% and kept her weekly methotrexate chemo at just under 50%. For some

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-7724651361965860942010-01-13T12:49:00.000-08:002010-01-13T12:55:29.623-08:00

February 5, 2009Subject: presenceI've recently had the wonderful good fortune of rediscovering someone I've known a long, long time. She and I were never good friends growing up but were quiet acquaintances admiring each other from afar. She told me recently of attending a yoga class that was structured around being present and living fully in the moment. I like this very much and it makes me

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-83420968330473631732010-01-13T12:47:00.000-08:002010-01-13T12:48:05.861-08:00

February 3, 2009Subject: Aria’s clinic todayThis was by far one of the nicest clinic visits we've ever had. It was quiet, quiet, quiet there today and that is why it was so pleasant. There was no heart-ache and no real intensity. It was so nice to be able to breathe deeply and carry myself with a genuinely relaxed attitude.Aria's ANC was 3350, which is still too high. We are dialing up her chemo

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-87701420472074907002009-11-19T12:30:00.000-08:002009-11-19T12:31:18.986-08:00

January 29, 2009Subject: The beauty of our life…I recognize that my recent emails have detailed the harder parts of our life as we contend with the constant barrage of trials associated with cancer treatment. I fear, however, that I may have misled you little. It is no lie that the negatives we deal with on a daily basis related to Aria and the oncology clinic in general are massive. Sometimes

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com2tag:blogger.com,1999:blog-5211598018690794126.post-4211829789630109672009-11-19T12:29:00.000-08:002009-11-19T12:30:30.976-08:00

January 26, 2009Subject: Aria’s January Spinal TapLast week Monday and Tuesday January 19 and 20, 2009 found the Layton family in the clinic. Monday was the day following our wonderful time on the mountains skiing and we went into clinic still feeling quite high about it. We were savoring the day and all the wonderful moments it brought. It was a busy clinic and the playroom was filled with

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-7275477758625042482009-11-19T12:03:00.000-08:002009-11-19T12:12:33.794-08:00

That's Reo. That itty-bitty person snow-plowing!Aria learning balance. She's being pulled along by her instructor.Aria and Rianna.Rianna the snow eater!January 20, 2009Subject: The place we're now in..January 20, 2009Subject: The place we’re now in…I thought I'd share with you a few pictures that capture Aria so completely as she is now. This first one was taken Saturday January 17, 2009 and the

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-57515232989394928122009-09-16T13:33:00.000-07:002009-09-16T13:43:17.896-07:00

January 15, 2009Subject: thoughtful reflection…..This is one of those halting photographs that was unintended but took our breath away once we loaded it on the computer. Aria was in the living room watching Doc put a hat on our snowman when he saw her and snapped this photo with his phone. He never expected to capture his reflection as a ghostly background to her image. This photograph mirrors

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com1tag:blogger.com,1999:blog-5211598018690794126.post-30971306519917526252009-09-16T13:32:00.000-07:002009-09-16T13:42:29.821-07:00

This is one of my all-time favorite pictures!This is our view from the kitchen window.This is what I see when the sun rises!January 13, 2009Subject: Aria and January 2009Our year anniversary is just 2 days away and it is very real and raw to us now. At different times over the past few days Doc and I have been teary and emotional talking about it. As we are remembering we’re shaking our heads.

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-70479201368647634792009-09-13T14:10:00.001-07:002009-09-13T14:16:24.081-07:00

December 13, 2008Subject: Aria’s got a coldIt came COMPLETELY out of nowhere yesterday. We went to the Christmas Party at the hospital. You know, the place where pristine health is sort of guaranteed. I never would have gone had Aria shown any indication that she was getting sick. She didn't show any sign whatsoever until we were leaving and I was buckling her in her car seat. She was asking is

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-61985846015065395462009-09-13T14:04:00.000-07:002009-09-13T14:09:57.406-07:00

This is one of our Ponderosa Pines that stands like a giant Christmas Tree in the snow. I love this tree!December 10, 2008Subject: Christmas TreesWhen I saw her standing at the nurse's station as I was leaving for the day, I was stunned. I wondered whether she was visiting, thinking that her daughter had already died as expected. I also wondered if by some miracle her daughter was still alive and

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-91646983652529657452009-09-12T09:38:00.000-07:002009-09-12T09:49:49.604-07:00

Aria as a Warrior (Kansas 2007)Aria and Reo running through Joyce's field (Kansas 2007)Aunt Joyce's pondFishing with Dad at Aunt Joyce's pond (Kansas 2007)December 5, 2008Subject: Aria is Coming HOME!!!YaHOOO!!! Yesterday Aria's ANC had dropped to 128 and Dr. Trobaugh really preferred that we stay another day but was willing to let us go home with some antibiotics if we really, really, wanted to.

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-49785635811023727772009-09-12T08:21:00.000-07:002009-09-12T09:12:57.621-07:00

These events really do appear out of nowhere, which is what makes living with the always looming, always lurking presence of them difficult. I suppose I’m getting better at going with the flow of it but I have to say that the constant, weird, and very real threat of something happening that presents in the form of a million pesky little worries, “Is Aria warm today? Does Aria look ok? Aria, are

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-17486964692599149292009-09-12T08:13:00.000-07:002009-09-12T08:21:39.900-07:00

Aria and Reo having a goofy moment in the car.The entire month of November was a blur. I didn't write anything about it until the first day of December! There was a monotony that I couldn’t seem to escape. I was tired and on the edge of illness a lot of the time, which made life particularly draining. As I read through this email I realize that the month was also the beginning of some serious

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-40687649220586551422009-09-05T16:48:00.000-07:002009-09-05T16:49:58.352-07:00

November 5, 2008Subject: I spy……It was 6 am this morning. It was dark and I could smell the warmth of Aria cuddling beside me. The quiet stillness of the morning was gently breaking with stirring sounds, shifting blankets, creaking wood, and contented moans and stretches coming from Rianna's crib just a few feet away. Aria was wide-awake and playful."Hey Mama, I spy with my little eye in this

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-30103813978247665572009-09-05T16:27:00.000-07:002009-09-05T16:48:09.444-07:00

October 26, 2008Subject: It is Aria’s Birthday!Today, Friday October 24, 2008 is Aria's 5th birthday. We are so thrilled and excited to be celebrating this day. This morning Aria is enjoying a movie and some quiet time. Later, we're going to the elementary school so Aria can have her school picture taken, which she missed a few weeks ago when she was in the hospital. After that, we are heading to

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-30850861641148100782009-09-05T16:25:00.000-07:002009-09-05T16:27:19.594-07:00

October 19, 2008Subject: To be deservingI've been thinking a great deal about what it means to 'deserve' something. With respect to people, the idea of 'deservedness' elicits a great deal of caution in me. There is an inescapable ring of entitlement as its companion that I abhor. I suppose the concept brings me back to the idea of 'duality' once again. Where there are positives and negatives;

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-83862993819859410492009-09-05T07:34:00.001-07:002009-09-05T07:35:43.618-07:00

October 16, 2008Subject: Aria is Well!It is hard to believe that we've been out of the hospital for a week now. Aria is back in school and feeling well!It was a rough few days at home at first. Reo was ill, which made us anxious about Aria considering her immune system was so suppressed. We figured that whatever he had, she had already been exposed to so we simply kept our fingers crossed and

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-71459969832334692272009-09-04T13:57:00.002-07:002009-09-04T13:59:39.449-07:00

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

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-69767807929670698752009-09-04T13:57:00.001-07:002009-09-04T13:57:49.029-07:00

October 6, 2008Subject: October Aria update Part 2I'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

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-82856876985663788342009-09-04T13:08:00.000-07:002009-09-04T13:20:40.959-07:00

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

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-85606200679715944372009-09-04T13:05:00.000-07:002009-09-04T13:07:44.154-07:00

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

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-89137782241052576592009-09-04T10:15:00.000-07:002009-09-04T13:05:21.319-07:00

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

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-73136172474335149722009-09-02T16:16:00.000-07:002009-09-02T16:19:46.640-07:00

Aria and her BELOVED Krista!September 29, 2008Subject: Last Friday Clinic for SeptemberIt is Sunday morning September 28, 2008. When I got up this morning the sun was beginning to rise. There was a light frost and a heavy veil of fog lingering suspended above the ground. The sun's rays breaking through the mist gave the air an ethereal essence and pinky glow. What a gorgeous way to begin the day.

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-39540859729787220232009-09-01T11:03:00.000-07:002009-09-01T11:05:16.270-07:00

September 21, 2008Subject: Aria and kitty catsBefore I launch into yet another tale about the farm in general and kitty cats in particular, let me give you an update about Aria and her clinic visit on Friday September 12, 2008. This appointment was only a finger poke and an evaluation with her physical therapist. She has been doing exceptionally well so this visit was completely relaxed and

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com1tag:blogger.com,1999:blog-5211598018690794126.post-10894504132546352312009-09-01T10:16:00.000-07:002009-09-01T10:24:46.977-07:00

September 10, 2008Subject: Sunday Polo FunIt has been a long time since we've had the emotional and physical well being to be out in public doing something truly fun. Until very recently, the public arena was always rather threatening; "What kind of germs are circulating out there ready to infect Aria? Will Aria have the stamina to deal with an exciting event? Do I have the wear to deal with it?"

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-62223417544955802482009-08-24T11:10:00.000-07:002009-08-24T11:24:41.116-07:00

This is an all time FAVORITE photograph of Aria!September 9, 2008Subject: September and AriaI thought you might enjoy some recent pictures and an update!It is Sunday September 7, 2008. I'm sitting in our library and the window to my left just slightly behind me is open a bit. I can hear the leaves blowing in a gentle breeze as well as one of the many wind-chimes hanging from a nearby branch. The

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August 26, 2008Subject: General UpdatesAugust 26, 2008I think it is important for me to once again say, "No news is good news!" I'm beginning to have a better sense of this "maintenance" phase and why people have alluded to its ease and gentle direction toward normalcy. We are fast approaching our first month in maintenance and the relief of Aria's well-being is extraordinary. Her tolerance of

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-60423349477955728592009-08-24T11:08:00.000-07:002009-08-24T11:09:28.111-07:00

August 19, 2008Subject: 1st maintenance Friday clinicIt is Saturday morning August 16, 2008. Yesterday we went to clinic so that Aria could have her finger poked, vitals taken and so forth. She has put on a little weight, which is good and has grown in height a little too. I can't remember the exact numbers now. Suffice it to say, that she is growing in the right direction. Her finger poke went

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-25395594913075318422009-08-24T09:34:00.000-07:002009-08-24T09:50:03.339-07:00

These are some Summer Fun picturesAria with a pony henna tatoo I made. She LOVED it!August 13, 2008Subject: The potty cornerHow wonderful it is to laugh! How fantastic it is to feel whole-hearted delight. In this moment, this is how I am and how we all are.Just before noon today, the kids and I decided it was time to play in the pool, which a large in-ground "L" shaped pool that is surrounded by

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-32992150059637566112009-08-24T09:33:00.000-07:002009-08-24T09:34:25.652-07:00

August 11, 2008Subject: what the writer readsMy Dad inspired this email. He and I were having a discussion about divinity one day and I mentioned a book I was reading at the time. He said to me, "You know, it might be interesting for you to somehow include some of the literature you've been reading. Some may be curious." I put that little nugget in the back of my mind until this morning when I

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-29337192690761859052009-08-24T09:32:00.000-07:002009-08-24T09:33:33.548-07:00

It is August 24, 2009 and I have just re-read this email. Oh my God! What I knew then versus what I know now! I remember this day like it was yesterday. I can see the hallway where I had a wonderful conversation with Dr. Trobaugh as if it was as familiar as a hallway in my home. I can smell the clinic as I type this. I can hear the sounds of the hospital ringing in my ears despite the fact that I

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-40980629683431988902009-08-23T10:21:00.001-07:002009-08-23T10:21:52.510-07:00

July 26, 2008Subject: Aria’s eyebrowsI don't know what it is exactly but lately Aria has seemed to me more beautiful than ever. Both Doc and I have commented that she has lost the 'steroid look'. Her face is no longer swollen and her belly isn't as distended as it once was. She looks like the old Aria and she certainly acts like herself. It is wonderful to have her back firing on all cylinders

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-84106684837594370392009-08-23T10:20:00.001-07:002009-08-23T10:20:23.633-07:00

This email represents one of many moments of reflection.July 15, 2008Subject: The other sideIn some respects it seems as if we are on the other side of what happened when our lives were turned upside-down. Reflecting on these 6 months I continue envisioning a cavern, which has been an incredibly useful theme for me. When I look at the process of what I've been through with Aria it feels a little

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-45157357787279170482009-08-23T10:18:00.000-07:002009-08-23T10:19:40.022-07:00

July 3, 2008Subject: Aria’s new treatmentI've lost my momentum for writing for the past few weeks. We've had company distracting me in the best possible ways and Aria has been feeling so well that we've been playing constantly. I haven't made time to sit and write as a result. My thoughts have been light and fleeting a lot of the time and that has been a wonderful little reprieve from the

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-41520256056813503992009-08-22T17:48:00.001-07:002009-08-22T17:48:40.807-07:00

June 21, 2008Subject: a support groupI had the most amazing inner-dialogue with myself last night. Suddenly out of nowhere I heard my gentle mind say, "I'd like you to consider going to the support group. I think you're ready." The only rationale I have for this thought entering my consciousness from what seemed completely out of the blue was noticing a flyer on the bulletin board at the clinic

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-30518404233916872022009-08-22T17:44:00.000-07:002009-08-22T17:48:17.880-07:00

This is Life. One day it is wonderful and magical and the next it is riddled with sorrow. That may sound melodramatic to you because sometimes we don’t experience this radical shift at all. Sometimes it is something that the mind toys with but the spirit doesn’t actually know. However, for those who have experienced tragedy there is a heightened sensitivity to the fact that Life changes very

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-28390366837351450402009-08-22T16:44:00.001-07:002009-08-22T16:57:11.190-07:00

June 16, 2008Subject: FunSaturday morning (June 14, 2008) around 7am Doc called to tell me that Aria's ANC was back up to 270! I was still in my pajamas, the kids were still sleeping but I would have jumped in the car right then and there racing to pick them up if Doc had wanted me to. We were absolutely beside ourselves. Aria had just woken up so he suggested I be there in an hour. For the next

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-30554316431967277192009-08-22T12:20:00.000-07:002009-08-22T12:21:07.372-07:00

June 14, 2008Subject: Aria is STILL in the hospital!It is a gorgeous Saturday morning here on the farm (June 14, 2008). We are very excited about Reo's "End of School Year Party" later this afternoon. He's about to lose his mind over the fact that a jumping castle is going to be in his very own backyard! I'm thrilled for him. Aria is doing so well and I thank you for all your warm wishes and

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-5918402166685573482009-08-22T11:00:00.000-07:002009-08-22T12:18:07.114-07:00

Aria in the Emergency Room with Reo by her side. Reo is always by her side.Reo and Aria taking a ride to her hospital room.June 12, 2008Subject: Aria was admittedJune 12, 2008:After checking Aria' temperature 3 times yesterday (June 11, 2008), I called the clinic and was told to head to the ER pronto. It is so strange. We were watching a movie and I was cuddling with Aria and at the end of the

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-84606662084854473102009-08-22T10:53:00.000-07:002009-08-22T11:00:54.684-07:00

June 10, 2008Subject: Aria’s noggin’By Sunday afternoon, I couldn't take it anymore. The shedding was starting to get in Aria's nose and mouth. She and I played a wonderful game where she yanked out handfuls of her hair and made a wish, "I wish for poop!" and then sprinkled her hair on my head. It was so much fun! I told her though, "Aria, your hair is getting everywhere, let's go downstairs and

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-42142192314587483992009-08-06T14:31:00.001-07:002009-08-06T14:37:59.338-07:00

June 9, 2008Subject: The Big ShedFriday June 6, 2008 I noticed Aria’s hair was starting to fall out. She was wearing pajamas made of fleece material and her hair was sticking to the shoulders and back of her shirt. As the day went on, more and more hair gathered giving her back a halo-aura fuzzy look. Whenever I gently tugged her hair a few silky strands came out and it began to sink in that she

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-79069309170680099322009-08-06T14:19:00.001-07:002009-08-06T14:23:19.316-07:00

June 5, 2008Subject: Pooping SandI write a lot about my process and the heaviness of it. The joy in my life has been sometimes wayward in these writings but let me assure you, my life is joy-filled. In this process it sometimes takes a back burner and has only a vague presence to my eye but it is always there. Our children embody joy in so many ways and being in their presence always drives that

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com1tag:blogger.com,1999:blog-5211598018690794126.post-57907333604296725132009-08-06T14:14:00.001-07:002009-08-06T14:14:47.383-07:00

June 4, 2008Subject: his name means “old man” in SwahiliHe was 10 years old and this morning I read his obituary. I met his mother a while ago and wrote about that brief encounter. We were standing in the hallway and exchanged glimpses of our stories. I told her Aria had been diagnosed with ALL and we were just starting the process. She told me that her son had been diagnosed 5 years ago with an

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-88617452627797725552009-08-06T10:27:00.000-07:002009-08-06T10:28:20.963-07:00

As part of Aria’s chemotherapy, she takes a steroid that completely changes her almost the moment it is ingested into her system. During the first phase of treatment she was on a very heavy dose for a month that not only changed how she looked but she became completely and utterly withdrawn. She takes a much lower dose now once a month but even then it affects her in the most interesting ways.

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-31298543534206217662009-08-06T09:44:00.000-07:002009-08-06T09:45:28.212-07:00

May 22, 2008Subject: Sporting Good’s Store womanWe went to a sporting goods store a few weeks ago to buy some baseball gear, some pants and a jersey, for Reo. I can count on one hand the number of times I’ve set foot into this kind of store being the jock that I am. As I piled the kids out of the car to head inside, I took notice that this was probably the first of many such trips and I found

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-36542546983037844662009-08-06T09:25:00.000-07:002009-08-06T09:34:34.764-07:00

May 20, 2008Subject: Friday ClinicI thought you would like a detailed update about Aria's most recent Friday May 16, 2008 clinic experience. She began the 4th phase of treatment called "Delayed Intensification". It is the one we've been dreading because it is the "big gun" chemo and by far the worst since our first phase of Induction. There are several new medications involved that are more

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-41925650549565316042009-08-04T10:56:00.000-07:002009-08-04T10:57:05.635-07:00

May 15, 2008Subject: Painting a PictureI’ve read many stories of how tragedy whether it is death, illness, injury, divorce or disillusionment effects peoples’ lives. Some describe it like a tornado appearing out of nowhere ripping the contents of a life once known into a mass of unrecognizable sharp dangerous fragments. People talk about it like a tidal wave washing over everything familiar and

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-31266903031454127162009-08-04T10:50:00.000-07:002009-08-04T10:51:08.160-07:00

At this stage of Aria’s treatment she still had hair. It was short and coarse in texture but she wasn’t immediately identifiable as a kid with cancer. That day was only about a month away and I was at this time readying myself and her for the stares, the wonderment and the comments that people would inevitably make. This was the beginning of that process.May 9, 2008Subject: InnocenceJust the

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-88026636374804230182009-08-04T10:38:00.000-07:002009-08-04T10:39:09.417-07:00

May 10, 2008Subject: Being HomeThis has been a wonderful week. Aria hasn’t felt this well in months. It is amazing to see in a week’s time her appetite return, her energy level increase and her desire to be independent soar. She is resting well at night and naps for up to 4 hours during the day. She has had no vomiting or diarrhea for over a week. I have an overwhelming sense of relief that I’m

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-19168788998595075642009-08-04T10:21:00.000-07:002009-08-04T10:22:58.042-07:00

This is one of the longest emails that I have ever written. It details our very first hospitalization since Aria’s diagnosis. Although this is lengthy and reviews our several day stay, it is still hard for me to imagine what it is like for so many others who finds themselves having to stay in the hospital for weeks and months at a time. Hospital time is unique and extraordinary. There are moments

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-8924508923821158832009-08-03T12:40:00.000-07:002009-08-03T12:41:07.632-07:00

April 20, 2008Subject: Live TrueI have a good many thoughts crossing paths in the cavern of my mind these days. Some of them are cold and dark perhaps, while others are open, roomy and airy. This seems the perfect way to illustrate the day-to-day trials I encounter with Aria. One moment she is energetic, full of life and light followed by another moment that has taken a turn rather unexpectedly

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-67291529430782483032009-08-03T11:31:00.001-07:002009-08-03T12:02:38.537-07:00

Several days had passed since I wrote this particular email describing what it is like to live with someone facing cancer in full battle mode. The strangeness of trying to assimilate both the brutality and the delicacy of this particular moment to moment existence is a real challenge to describe. I've come to realize now more than a year later that it is nothing more than the never-ending human

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-89701510730897660982009-08-03T11:17:00.000-07:002009-08-03T11:21:55.916-07:00

April 2, 2008“Honesty”I have a friend who has gas. This alone isn’t all that unique except that she is so honest about it. Once when she came over, she had let one rip and at the same time I had picked up the baby. I remarked to the baby in my sing-song baby voice, “S.t.i.n.k.y baby! You stinky little thing!” My friend sheepishly admitted, “ahhhh, no, that would be me!” I was stunned because what

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-27164443323680849812009-06-30T12:37:00.000-07:002009-06-30T12:38:05.444-07:00

March 31, 2008“Into the Light”It is March 31, 2008 and I am very, very happy to report that I have risen from the quicksand of sadness and stand now on the edge of that pit with light on my face. The victorious smile I wear, I realize, has little to do with me but everything to do with the many people who came to my aid. I smile to show my gratitude, which is great.I thought, like Jaguar Paw, I

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-71540217243226985262009-06-30T12:16:00.000-07:002009-06-30T12:17:44.907-07:00

It is incredible to witness how quickly things change. One moment in a day, I am full of joy and in an instant that joy is in tatters. Aria’s cancer has been a dizzying ride in that regard and it has taught me how to surrender in some ways. This isn’t to imply that I become a victim and give up. On the contrary, I have learned to become a fuller participant allowing Life to take me where it will.

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-52174197903638782362009-06-30T08:19:00.000-07:002009-06-30T08:20:33.868-07:00

Subject: Insights of an old soulMarch 21, 2008Yesterday I was getting Aria dressed and we had the most fascinating conversation.“Mom, I want to have a ponytail again. I want you to use my black baubles. But my hair is not going to be there and then it will grow back!” I was so floored I didn’t know how to respond. It took me a moment to collect myself. It was the first time she expressed any

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-16582697178149864632009-06-30T08:10:00.001-07:002009-06-30T08:14:49.479-07:00

This is a classic tale of hoping for something and having it turn out to be something completely different. This is the expression of expectations. We expect something to be a certain way. We expect it because we desire it badly and hope for it and then we’re dashed when Life has something else in mind for us. We feel irritated, let-down, rigid, and almost incapable of being open in allowing Life

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-36400521665196573462009-06-29T11:52:00.001-07:002009-06-29T11:53:53.842-07:00

Subject: JoyDate: March 11, 2008 I thought you might enjoy seeing some pure joy! This is Aria and I playing with the computer camera! It was so much fun and we giggled and laughed for a long, long time together! My love and smiles to you! ~j

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-60841976470890794692009-06-29T11:47:00.000-07:002009-06-29T11:48:10.184-07:00

This email was inspired after reading and hearing stories of others dealing with crisis. It all boiled down to spending time with your kids because they are all that matters. For whatever reason, that idea struck a nerve. It has always struck a nerve in me, hitting a resonant chord of something sounding good but not being entirely true. On the surface this may sound horrid but it wasn’t until my

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-86419918010545901182009-06-26T10:59:00.001-07:002009-06-26T10:59:47.240-07:00

It is Friday March 7, 2008, early evening. I doubt I will get very far with this email but I thought while I had a little momentum I would gather some thoughts for you. Let me begin with the most important news of the day and that is that Aria is GREAT! She is just terrific! She is active and talkative. Her imagination is once again overflowing with the gorgeous view of a child. She has been

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-82028229096205742812009-06-26T09:56:00.000-07:002009-06-26T09:57:24.945-07:00

I’ve included at the end of this email 2 responses from my Dad, Gene Hayes. My parents are by far my biggest and devoted fans. They are also hopelessly biased in their view of me, which makes me giggle every time I read a response from my dad. Nevertheless, I wanted to share with you some of the kindness I’ve received from them every day of my life. I am infinitely blessed.By the way, my dad

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-89846405606214488282009-06-26T09:25:00.000-07:002009-06-26T09:26:28.216-07:00

I think very early on I realized that Aria’s leukemia would be a challenge on many levels, not the least of which was battling the cancer itself. I realize now that I was thrown into a hyper-drive of a self-discovery of sorts. I wasn’t going to be able to deny my feelings no matter how much I may have wanted to. This was intimidating because we aren’t taught well how to handle the dark side of

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com1tag:blogger.com,1999:blog-5211598018690794126.post-90238822499068429462009-06-23T10:34:00.000-07:002009-06-23T10:36:16.188-07:00

A friend of mine recently wrote about her son finally losing his hair. She shaved it after growing weary of hair in her chapstick, drinks, food and so forth. But she mentioned being glad to have this part of the journey over with and to let go of all the baggage associated with hair loss due to chemotherapy treatment. I loved that word, “Baggage” to describe the emotional build-up around this

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com1tag:blogger.com,1999:blog-5211598018690794126.post-31054259909167983532009-06-15T10:08:00.000-07:002009-06-15T10:09:58.865-07:00

This email says it all. When dealing with hardship, one can always find the lighter side. It may take some effort, but it is always there.Subject: On a much lighter noteDate: February 21, 2008It is a brilliant Thursday (February 21, 2008) afternoon in eastern Washington, with the temperature hovering around 40 degrees. The snow is sparkling, the air is crisp and the sun is warm. I can smell

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com2tag:blogger.com,1999:blog-5211598018690794126.post-30395330654772960182009-06-15T09:47:00.000-07:002009-06-15T09:50:23.344-07:00

Aria was beginning to emerge from the steroid cocoon she had sheltered in for more than month. It was marvelous to see her again, to hear her humor and to witness how she was coming to terms with everything that had already happened to her. I’m in awe of this child.Date: February 20, 2008Subject: A conversation with AriaDespite a few ups and downs in the last few days, Aria is really beginning to

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-79710613493615088642009-06-15T09:27:00.000-07:002009-06-15T09:30:28.892-07:00

Hair Loss and baldness is like a name-tag that shouts, “I HAVE CANCER!” It is a visual reminder of just how sick people are when they endure this kind of treatment. It is also yet another thing one must let go and I think for many, this is very challenging. I didn’t know it at the time, but hair loss was going to be the least of my concerns. People were trying to prepare me for it but it always

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-25552608287088208552009-06-15T08:58:00.000-07:002009-06-15T09:04:20.853-07:00

This email basically documents the end of Phase 1 called INDUCTION.There are many, many opportunities to interact with all kinds of people. Not all of these interactions go very well. In the world of serious illness for example, people are stressed, information is lacking, and sleep deprivation sets in, among a host of other emotional deterrents. This state of mind and being isn’t conducive for

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com1tag:blogger.com,1999:blog-5211598018690794126.post-49303179780055630222009-06-11T10:07:00.000-07:002009-06-11T10:14:39.053-07:00

This is an email I wrote this morning and just sent.June11, 2009Aria's June Clinic VisitWhat a weird few weeks. I wrote about a magnificent oak tree back on May 28, 2009. I was struggling with negativity like a bit of medieval iron chiseled, thick and weighty. I couldn't get rid of it. I has been with me since weighing heavier and heavier. However, I'm free of that burden now but before I tell

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com2tag:blogger.com,1999:blog-5211598018690794126.post-77076849433102315172009-06-10T10:47:00.000-07:002009-06-10T10:50:07.986-07:00

Reading this now, 16 months later, is an extraordinary thing. It is hard to imagine that I ever worried that Aria would be forever changed by her steroid treatment. At the same time I understand why I had the concerns I did. The changes were so dramatic, so harsh and just so unbelievably real. I supposed mix that together with the overall shock of a cancer diagnosis and it is no wonder that I

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-33070601622876017382009-06-10T10:46:00.000-07:002009-06-10T10:47:51.563-07:00

My sister Sue asked me to write the nitty-gritty details of what Aria’s treatment was going to look like. I did that in a 6 part series outlining the 5 major phases of treatment: Induction, Consolidation, Interim Maintenance, Delayed Intensification, and Maintenance. It is vital to say that finishing a phase and stepping into the next is like nothing I have experienced before. There is an

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-11515154846895289372009-06-01T13:25:00.001-07:002009-06-01T13:32:31.283-07:00

This email was one of several that was truly cathartic for me. It felt like I put it all out there for everyone and anyone to see and I didn’t have a single care in the world about it. I was in the moment and wanted to share what that moment was like. We all have these moments but we’re private about them and I was too. I felt compelled, however, in this instance to dismantle the myths associated

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com1tag:blogger.com,1999:blog-5211598018690794126.post-48689075011416830582009-06-01T12:44:00.000-07:002009-06-01T12:56:51.336-07:00

I know I’m repeating myself when mentioning the effects of steroids. It cannot, however, be emphasized enough just how profound the changes were and how deeply effected we all were by them.Giving Aria steroid treatment is something we have to do to this day as part of her chemotherapy. We accept this as it fits in the entire package of treating her cancer. What is so hard to accept, however, even

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-27913363304161718632009-05-28T17:41:00.000-07:002009-05-28T17:54:41.623-07:00

I received an overwhelming response after emailing this story. I don’t quite know what it was about it that tapped into the psyche of so many. I suppose the thing that comes to mind is that it is a pure example of something that makes you want to laugh and cry at the same time. Truly, we’ve had so many of these moments that are belly aching hilarious and simultaneously heart breaking. I’ve

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com1tag:blogger.com,1999:blog-5211598018690794126.post-18487697502573506232009-05-28T17:08:00.002-07:002009-05-28T17:41:20.592-07:00

Initially, Aria was given a 28 day course of steroid (Decadron, which we call deca-Drama) treatment, followed by monthly steroids for 5 days twice a day. That may not sound like a lot, but let me tell you, these steroids are really awful. People told me repeatedly how ‘hard’ the steroids were. I kept asking what ‘hard’ meant. I craved examples of what kids were like and no one seemed able to draw

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-92090544928455992142009-05-28T17:05:00.000-07:002009-05-28T17:07:46.886-07:00

There really isn’t much need to preface this email other than to note the overwhelming need I felt at that time to notice every detail of almost everything. It was like I was scared to death the world I was seeing was suddenly going to be destroyed leaving no remnants of familiarity. I wanted to take in everything and burn it to memory, just in case.Subject: Aria's toesDate: February 3, 2008 Aria

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0tag:blogger.com,1999:blog-5211598018690794126.post-36126464398922912602009-05-26T14:00:00.000-07:002009-05-26T14:05:37.418-07:00

I wrote this email to give friends and family an update of Aria’s second spinal tap procedure since leaving the hospital and becoming out-patients. Aria was just beginning to show significant signs of the steroids and we were beginning to understand the routine and life of the out-patient world. Every aspect of what we experienced felt so intense that lighter moments were equally intense in their

julia hayeshttp://www.blogger.com/profile/04865271849261511234noreply@blogger.com0