December 25, 2009

A Holiday Greeting from Reid's Family ~

This has been a year of many beginnings. By far the most exciting was college. I lived in the dorms, ate myself 20 pounds heavier, enjoyed my classes and learned as much socially as academically. I landed three sweet jobs during the school year, as a stitcher for the SOU theater department, a ski school instructor and a race coach for MARA. I learned valuable lessons around time management in both work and school and received a lot of great mentoring to help me through my mistakes. I celebrated two years with the love of my life, Emily, and worked as a host over the summer at the Ashland  Bistro Cafe. Right now, I'm taking a break from school and just having fun with life. Next year, I am looking forward to returning to the University as well as traveling to Japan. I hope everyone has had as good a year as mine, and I wish you even better for the future. ~ Reid


Looking back at the year,  I had a great soccer season, fun with friends, rocked hula hooping, goofed with Bella (our pup), loved being at EarthTeach, played with my brother and sister and was the youngest fastest runner in the Ashland 4th of July race! Lately, I have been waking up to frost clinging to the windows of my room and wondering when snow will fall on Ashland. I’m also thinking about turning ten in January. Double digits. Cool! ~ Ginny

Spiraling into memories of this past year - of clear Friday’s at EarthTeach, a clumsy puppy growing up, snow flakes framed against a dark sky, gliding down slopes at Mt. Ashland, the smell of spring on the breeze, an adventure to Hawaii, a 40 mile journey with just me and my feet, 8th grade graduation, music camp - a scottish accent & a pack of wild fiddlers, hot summer air, cold pools, dirty bare feet, the forest, howling at the moon, pie, meteor showers, the smell of a violin shop, my family, my brother, love-sorrow-joy, autumn again, the start of high school, nervousness, feisty English teachers, a soccer ball-sweaty jerseys-long bus rides-team, home alone, turn-on-the-radio-and-sing-really-loud-nights, the moon, scary movies, a hand to hold, mashed potatoes,  the smell of a book store, laughing till you pee, mad dancing, this moment right now and a chance to be thankful. ~ Sarah Gracie



This year I took my first holiday in twenty years and went to the Yucatan Peninsula.  For me, it was a place where, as Neruda would say “...every day on the balcony of the sea - wings open, fire is born and everything is blue again like morning.” The sand was white, the water - truly turquoise, and my heart was rested and filled. One never knows for sure when having a full heart will come in handy later in the year.... ~ M

Day Ninty-Three - December 7, 2009

Dear Friends and Family ~

Let me start by acknowledging the amazing efforts put forth last month in support of Reid. The Ashland Soccer Club, lead by the focused and loving efforts of Christiane Pyle, held the 1st annual Futball for Life! Tournament and over 24 youth teams, volunteer referees, coaches and parents came together for an incredibly successful day of soccer for Reid’s benefit. Then in the same week, the band Borderline (with my sister Emy Phelps and amazing musicians Bob Evoniuk, Sam Cuenca, Bob DiChiro and Jake Phelps) held not one - but TWO brilliant concerts, also as fundraisers for Reid. Additionally, many community members have offered generous donations to Reid’s Leukemia Fund this past month. At this point, about a years’ worth of Reid’s alternative health and nutritional care needs are covered - to support his body and immune system as it deals with the excruciatingly powerful effects of chemotherapy. We are profoundly grateful for all this help.

Standing by Reid in the capacity of mom and caregiver and witnessing this tenderly fierce public support of his battle with leukemia - juxtaposed to his private experience that is so physically demanding and emotionally intense, has been a honor and privilege. Last month, as I sat at Paschal listening to the music, while Reid - that same night - started his third round of chemo in Rogue Valley Memorial, I was suddenly visited by an image of Reid as a four year old whose passionate and singular determination to be Batman dictated nearly every moment of his waking imagination. It was the year when his silky black cape was removed only for swim lessons and even then, with resistance. As I remembered his exuberant spirit, I was struck by the notion that maybe what ultimately makes a super hero isn’t having been born on another planet, or received some strange infusion, or the costume or cape. Maybe the bottom line is that everyone believes in him and truly wants him to succeed; therefore, he becomes and is heroic - no matter the outcome. This is Reid.

Next week, Reid will start chemo round four. He’ll be home for Christmas and another recovery period, and then will receive the last round in mid January. After that, he’ll be seeing his docs at OHSU again and learning the next portion of this life map.

We continue to watch and wait, to take each day as a unique step, to laugh whenever possible, cry when necessary, let go of that which no longer serves and tell each other - every day - about the amazing love in our hearts. I hope you do the same with those your love

All will be well ~ Martha

PS Just a reminder, there are blog pages on Reid’s website. They are essentially an email chronicle. Feel free to share the link with friends. You are also welcome to comment there if you want to share your insights and feelings with more community than just our family.

Day Eighty - November 24, 2009

Home from the Third Dose of Chemotherapy:

"During chemo, you're more tired than you've ever been. It's like a cloud passing over the sun, and suddenly you're out. You don't know how you'll answer the door when your groceries are delivered. But you also find that you're stronger than you've ever been. You're clear. Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception. Previously, it has taken you weeks, months, or years to discover the meaning of an experience. Now it's instantaneous." ~ Melissa Bank, American Author

Day Fifty-Five: October 26, 2009

Dear Friends, 

Thought y’all might want to know where the meandering journey of leukemia has taken Reid since the report of his remission.

FIrst, the allopathic news:

Reid and Pete traveled back to Portland on the 15th to meet with Dr. Kovacsovics regarding all the details of Reid’s October 9th bone marrow biopsy. The OHSU experts are quick to remind us that this remission is not a cure, and so recommended that Reid receive consolidation chemotherapy to help him remain in remission. There is a 50% chance of relapse with chemotherapy alone.

Regarding transplant: receiving his own cells in a transplant is an option for Reid (since Sarah is not a transplant match), and while this approach would reduce the relapse risk down to 30-35%, his doctors don’t recommend it at this time due to the aggressive nature of the disease if there were to be a relapse from stem cell therapy. The other transplant choice (a matched unrelated donor / MUD) is also not recommended at this juncture, due to high risks and complications, but may be considered later if necessary. So, in a nutshell - transplant has been put on the back shelf.

Back at the ranch, we had hoped that Reid’s consolidation chemo would be an outpatient clinic experience through the Medford Hematological Oncology group, but Dr. Savage, his local oncologist determined that it would be best for Reid to be admitted to Rogue Valley Medical Center for his five day stints of chemo (receiving doses twice daily on days #1-3-5). And that’s where he is right now, with today being day #5, and discharge home tomorrow. 

One need only watch the nurses handling the chemo medications with their extreme biohazard precautions to start to appreciate the incredible toxicity of the stuff, but then as you also factor in the way it storms through the bone marrow like a raging wildfire and strips away every living thing, you can’t help but stop breathing for a few moments. It’s an awe-some process: purifying the marrow (if you dare call it that) in the most extreme and nearly overpowering of ways.

From about Halloween (day #10)  though Veteran’s Day (day #21), Reid’s white blood cells (those that protect the body from infection), red blood cells (those that provide oxygen and nutrition through the body) and platelets (they keep him from bleeding) will be low. He’ll need protective medications to keep from getting infections; we’ll monitor his temperature twice daily (and holler about anything higher than 100.4 F), and he may need to go into the clinic for blood and platelet transfusions, while also expecting to report to the lab two or three times a week until his blood counts recover. Whew. Reid’s been through this phase of chemo before, but he was at OHSU then. This will be our first encounter with running the gauntlet at home, and yes - the mama feels a bit nervous.

Once his counts are back up, around day 28, he’ll be back in RVMC for another five day course of chemo. This whole deal will happen a total of four times. Yes. Four times.

Because many of you have asked, “What else will you pursue?” I can tell you that on the  ‘alternative’ healing front we are in consult with my dear and trusted friend, Jonathan Treasure who is a Medical Herbalist practicing at the Centre for Natural Healing here is Southern Oregon. Jonno specifically assists cancer patients with cutting edge mainstream treatments, managing chemotherapy toxicites with botanicals, supplements and dietary interventions. We are profoundly grateful for the wisdom and support that he has already offered not only to Reid, but our family. 

I struggle a bit when writing to you all, about how much to share. I mean really, who wants to read about cancer in the present tense? The books and articles that have appeared on our coffee table these last few weeks all stem from wise and road-weary reflections - those gained with emotional hindsight and a clear understanding of the ending. In the present, not only does one have to face this disease monster of our darkest nightmares, Cancer,  but a host of additional annoying and negative creatures that accompany the monster into our lives: insurance claims and policies, medical bills, government agencies, prescriptions, appointments, blah, blah, blah. It begins to feel remarkably unfair that the sheer weight and reality of a cancer diagnosis can’t be just that and that alone. This is one cake that doesn’t need icing, yet it comes in spades. In the present with cancer, hindsight is only a few days old - measured by varying degrees of stress, relief, exhaustion, and information, and the only thing we clearly understand about the ending is that we desperately want to get there whole and healthy. In the meantime, we divide up and tackle the various ugly creatures and dirty tasks set before us one day at a time, while the single person in this equation who least deserves to carry the heaviest load is Reid.

As you know, Reid has done remarkably well thus far - he possesses a passionate spirit that is present, strong, and infused with gentle and joyous life force. For me, it is familiar to cheer for Reid, having already spent nineteen years as his biggest fan, nudging him to be brave and loving, to “go for it,” and be his best truest self. Would that I could now also give him tools with “success guaranteed” brands on them, but those are difficult tools to lay hands on. Our collective prayers and the continual intentional focus that All Will Be Well for Reid are essential.

I want to express my gratitude once again for all among you who have not only looked after Pete, Scott, the girls and I - but also for checking in on my folks, supporting Reid’s aunts and uncles who have been so incredibly present and involved, and casting a tender net of love and concern over our families during this crisis. Having grown up in this amazing place, where I’ve occasionally said - not as nicely as I ought - that the town is a bit “too small” at times, I am deeply moved by the compassion of our community. I cannot begin to imagine the loneliness, overwhelm and fear that people living in less connected places, with fewer friends and family around them must contend with. I am reminded, every single day, that we all have the power and ability to make a difference for one another, and we get to choose if that will be positive or not. This “ability” is a powerful and blessed gift - available to us as often as we dare employ our hearts. Amazing. And thank you for daring.

Wishing you well on this rainy October afternoon ~

With love, Martha

Day Forty-Three: October 14, 2009

Tonight I am bound to Ashland by flu, while Pete and Reid are in Portland - armed with three pages of questions that we have for the docs at OHSU at Reid's Thursday morning appointment... and this is the poem that appears in my in box. Seemed like it wanted to be shared with all of you, Reid's incredible community of love and support.
Good night and sweet dreams ~

Praying

It doesn't have to be
the blue iris, it could be
weeds in a vacant lot, or a few
small stones; just
pay attention, then patch

a few words together and don't try
to make them elaborate, this isn't
a contest but the doorway

into thanks, and a silence in which
another voice may speak.

~ Mary Oliver ~

Day Forty-Two: October 13, 2009

5:05 PM phone call yesterday from Dr. K (Kovacsovics) (Yeah, say that name five times very fast!) at Oregon Health Sciences University.

“We have the best possible news on Reid’s latest bone marrow biopsy. He is in complete remission.”

Whoa! WOW! big, Big, BIG WOWOWOWOWO! Cue: Happy dancing and tears simultaneously.

Next step: We learn about consolidation chemotherapy, which is most likely to be the next phase in Reid’s treatment. For those of you still looking to learn about this process, I’ve included a clipping below from the National Bone Marrow program’s website

An appt. in Portland later this week with the medical team will reveal more. Preparations for out patient treatment in Medford are underway and sources of alternative health support here at home continue to emerge. Many blessings.

It’s a long one, but our young man is on the healing road. And if you see this tall thin handsome guy around Ashland - with eyelashes to envy and a brilliant smile - give him a (flu-free, please) hug!  (:

We are profoundly grateful for the support you all continue to offer Reid - as well as the rest of the wild Honeywell-Phelps-Cotton-Davidson-Kane-Friedl families.

~ And all WILL be WELL, Martha

P.S Reid Support Team - Fundraising Meeting at Tease restuarant tonight at 6:30 PM RSVP to Julie O. 301-5234

taken a few days before discharge from OHSU - Reid and his sweetie, Emily

Induction chemotherapy

For most patients, the standard first phase of AML treatment is induction chemotherapy. The goal of induction chemotherapy is to bring the disease into remission. Remission is when the patient's blood counts return to normal and bone marrow samples show no sign of disease (less than 5% of cells are leukemia cells). 

Induction chemotherapy is very intense. It usually lasts one week, followed by three or more weeks for the patient to recover from the treatment. 

If one week of treatment does not bring a remission, treatment may be repeated once or twice. Induction brings a complete remission in: 

• About 70% to 80% of adults under age 60.
• About 50% of adults over age 60.
• More than 90% of children.

Successful induction chemotherapy destroys most of the leukemia cells, but a few will be left in the body. If these cells are not destroyed, they can cause a relapse of the disease. More treatment is needed to destroy the remaining leukemia cells. The next step may be consolidation chemotherapy or a transplant, depending on the treatment plan.

Consolidation chemotherapy

The second phase of chemotherapy is often called consolidation chemotherapy. The goal of consolidation chemotherapy is to destroy any remaining leukemia cells. 

Day Twenty-Two: September 23, 2009

Dear friends ~ A short report ~

Tuesday at 5 PM Reid's doctor showed up to share the bone marrow biopsy reports with us. If you recall from my previous email, the goal for this biopsy was to see an empty bone marrow. If the marrow showed less than 10% immature cells, Reid would have received a "good" rating; if the marrow showed less than 5%, Reid would have received an "excellent" rating.

His bone marrow biopsy showed 1% !!!

The doctor said he was very happy, very cautious and very impressed at how responsive Reid has been to his treatment. The doc was also very clear in stating that while the cancer is not in remission, we can feel relieved for Reid's fantastic results, so far.

With this report, the medical team has decided to do only maintenance therapy with Reid (treat his tummy aches and any other possible infections or discomfort), but they are NOT going to do any chemotherapy for the next few days. They are allowing Reid's body to rest and meanwhile watching as his cell counts rise daily. By Friday or Saturday, they anticipate all of his cell counts being high enough that they can then do the second biopsy (much sooner than we had expected) - and find out how his marrow looks at that time.

Today's rounds included the doc's remarking that "boredom equals good" at present. Reid's main job is to exercise and sleep. His doc was impressed to hear that Reido was doing push ups yesterday, and also - as someone has now informed Reid that eleven laps around the onoclogy unit measurse one mile - he has started making that a part of his daily walking routine.

I'm reminded of Reid playing soccer while his body was still growing, and the sight of his long lanky legs stretched out as he bounded around the pitch. Eisa used to say, "He's like a horse! He's so fast, his legs just get away from him." as there were occasionally times when Reid would end up tripping in the velocity and excitement of play. As he ambles around the hallway of 14K at OHSU, those are still the same long legs attached to the same full heart - as the kid we have loved to watch run, run, run - and I believe, as you all do too, that he'll get up to speed again.

Your support and prayers have been and continue to be amazing. Our family - and especially Reid - thank you very very much.

~ and all will be well,

love, Martha

Day Nineteen - Monday, September 21, 2009

Monday, September 21, 2009

Dearest friends and loving community,

This long email is a slightly shorter version of one that was shared with family member this past weekend. Being able to bring you all up-to-date via email is an incredible blessing, not just due to the sheer beautiful volume of you all, but because the telling and retelling of this complicated medical situation is difficult. On a base level - it is physically exhausting. There are so many of us who love and care for Reid, who are in a sort of pain ourselves because we feel heart broken over this senseless experience, that it is difficult for me not to want to answer all your questions - as well as comfort you. I’m sure some of you have encountered this phenomenon in your own life challenges. The human condition includes our desire to care for one another; it’s an amazing blessing that also needs to be gently balanced at times such as these. On a heart level, as Reid’s mama, - it is achingly hard to have to repeatedly declare just how fragile Reid’s life is. Telling the truth is important; dwelling on the scary aspects won’t help any of us, most especially Reid.

So , that all said - what follows is the latest update on the long-term approach to the leukemia that Reid is fighting. Be aware, this email is based notes taken during a meeting with an OHSU nurse coordinator. I was scribbling as fast as I could, attempting to miss nothing essential, asking questions as well as possible - while still note-taking. These rough notes will provide you a framework of information that YOU can fill in by doing some reading and research. I’m going to include some info sources for you at the bottom of this email.

Reid is now being considered a stem cell transplant candidate. Reid’s AML diagnosis has classified him as an “intermediate risk” AML patient. While the classification is based on multiple medical variables, what it means at a basic level is that the medical team has determined that chemotherapy alone will NOT keep Reid’s cancer in remission. In addition to continued chemotherapy,  he will need a stem cell transplant.

So, here’s where we are now - as well as the next steps of Reid’s care:
Reid has successfully survived - with few serious side effects or complications - what is called Induction Chemotherapy. The goal of induction chemo is to empty the bone marrow of everything and then discover, as new cells begin to manufacture in his marrow, whether or not they are all healthy and cancer-free. This process takes 14-28 days. As I send this,  Reid is undergoing a bone marrow biopsy which will reveal to the docs whether the induction chemo worked. That decision is based on the  % of any remaining cancer cells that they see in the marrow. Under 10% is considered “good.” Under 5% is excellent.

At any rate, the docs will be examining his bone marrow and peripheral blood, which both could reveal cancer cells or lack thereof. If induction chemo hasn’t completely done it’s job, and / or depending to the degree of success of the induction chemo, the docs may choose to give him more or less further chemo between days 15 and 28.

OUR HIGHEST PRAYER FOR TODAY IS THAT REID HAVE EMPTY BONE MARROW - which is called hypo-cellular marrow. Next, they check perform another biopsy a between days 28-35. At that time, they are hoping to see new and ONLY HEALTHY cells. Best case scenario, assuming remission, would then be that the docs would prescribe more chemotherapy (not like the induction), but called “Consolidation” or maintenance chemo - which consolidates the cancer and is given in order for Reid to gain ground and beat down the disease.

Consolidation is administered in 2-6 cycles - or 1 X per 28-35 days. So, we’re looking at once a month for up to 6 months. It is administered through IV 3-5 days in a row, every 12 hours in a 2 hour infusion -  once in the AM and once in the PM. Sometimes it’s done as an out patient, sometimes it’s done as inpatient at OHSU. Those are details that are decided between doc and Reid, as well as based on all the medical variable and Reid’s preferences. (By the way - the IV could be through his PIC line (which he currently has in his upper left arm), but there are different options for a catheter; most of these are simple for Reid to live with. And would allow him to even - play soccer or ski,  if he felt like it.) It’s highly possible that he could be home during this period of time - for however long this period is.

Because we are moving forward on stem cell transplant for Reid, the goal with chemo is to give as little consolidation chemo as possible. Why? Because the more times that Reid is hit with the Chemo, the more worn down his body will become. It’s mighty tough stuff on his internal organs..... So there are two primary goals to hold in mind and in action:
#1 To keep the cancer in Remission in order for Reid to go to transplant
#2 To give Reid as few cycles of Chemo as possible to protect his body while we get him into remission.
It’s careful balancing act.

Currently, Reid is “taking the prescribed curriculum” (as my friend Jonathan, an herbal oncologist puts it.) He has to wait out these bone marrow biopsies and do whatever course of  treatment is administered while we get the cancer into remission, as well as deal with the myriad other issues that “might” arise on any given day (for instance, he’s late;y had a lot of stomach pain that has to be attended to.) In this sense, there are many variables every day that become factors in determining how tomorrow may or may not be similar to today. It’s the “one day at a time” thing. No getting around it.

From the transplant team’s position, here are their next steps: the transplant docs will do a HLA (HLA= Human Leucocyte Antigen.) typing draws on Reid and Sarah (Reid’s only full sibling). (HLA= Human Leucocyte Antigen.)

Here’s what little I understand so far:
(Christopher, try not to cringe at my laymen’s notes here. I am looking forward to learning more from you, thanks!)

Each of us has individual protein markers on our cells. An HLA draw sequences them, and then doctors begin looking for an HLA match with Reid. They are looking to match certain proteins that we all have on the surface of our cells. We all have - among many - 12 major proteins, and that’s what we want to match - 12 out of 12 of those major proteins. The higher the number of matches, the greater success a stem cell transplant has. The less number  of matching proteins, the more risk a transplant carries, not only from the point of engraftment (Reid’s body accepting the new cells), but also the higher risk of graph vs host disease. I’ll learn more about these by reading - which again, I invite you all to do if you’re so moved.

A match of 10 out of 12 is the lowest match the docs will accept - and even then, there are factors to consider depending on which of the proteins might be mismatched.
We start with Sarah - Reid’s only full blood sibling - in looking for a match. She is our best starting point, with a 25% chance of having at least 10 or 11 out of the 12 necessary proteins in match. (Ginny would have 6, at least, but not more. Scott or I would have 6 at least - but not more.)

You may be asking right now. can I be typed? Can I be a match and donate to Reid? If you’re not a full relation to Reid, you can be typed - and you may even be a match, but the way the donor pool is set up - you have to be willing to join the national donor pool and be willing to donate to ANYONE. You don’t get to say - “if I’m a match, this is only for Reid Honeywell.” This is not to say you ought not consider doing this tremendous act of service and love to - whomever is in need. Sadly - there are other cancer fighters - not just like our Reid as an individual - but certainly just as loved and cherished and deserving of a long and fruitful life as Reid. So, if becoming a donor feels right to you,  maybe that’s all we need to be motivated by - by helping anyone get through this fight - because we know that Reid has to too. Check the website at the end of this email for more info. on how you can become a donor.

The typing is done through a simple blood draw. Sarah - who said “let’s go for it” without blinking - will have four tubes of blood drawn at Ashland Community Hospital and that sample will be sent to OHSU for the typing. If she is not a match - the transplant team will search the national donor registry for a match - and then, if need be - the international donor registry for a matching donor. Because Reid is a caucasian male, he has an 85% chance of finding a match.

If Sarah is a match (or whomever is), here’s what the donor will experience:
When Reid’s cancer is in remission and the docs feel the timing is most optimal - Sarah will go up to OHSU for about a week. She will be screened: Have a physical exam, a chest xray, an EKG and more blood work to rule out things like Hepatitis. Next, she - and the rest of us will meet with Dr. Maziare - the medical director for OHSU’s entire transplant program - and Reid’s transplant doc. Sarah will be administered 5 does of neupogen - a drug used to induce stem cell growth in the human body. Neupogen is given subcutaneously (much like insulin). She’ll have it given 1 X daily for 5 days. Side effects: some people complain of “bone pain” much like the bruised feeling after some hard hits on the soccer field. Extra-strength tylenol is said to be sufficient for managing the discomfort. Within one day of stopping the neupogen, that pain subsides. Within two days of stopping, the drug is entirely out of the system.

Next, Sarah would go to the out patient clinic where she would spend three hours in an easy chair with one arm hooked up to an IV that is drawing out blood - which is then being circulated and the stem cells “spun out” - and then Sarah’s same own the red cells, white cells and platelets - minus the stem cells - is returned to her body via the other arm. When the process is complete, the stem cell collection is taken to the lab for testing, and two hours later - it is brought to Reid and hooked up to him, much like receiving a transfusion. Then, as the nurse coordinator said, “I don’t know how, but the cells know exactly where to go.”

When we get close to transplant time, Reid is committed to staying in Portland for the first 100 days. The first 30 days, he will stay at OHSU for the transplant itself and recovery from the process. For 2-4 months after that, he must be within 15 minutes of OHSU because 3-4 days per week he will come into the transplant clinic for checkups while his immune system is setting up. Even though we’re finding him a perfect match, his body may recognize the donor as foreign. Medical management is necessary to enable Reid’s body and the donor the learn to “play nicely” together.

Besides Reid relocating to Portland during this time, he will need 2-4 primary caregivers, preferably comprised of family and friends. These integral people will take classes to learn how to assist Reid in his healing. I’m not altogether sure how the care team rotates - but I’m sure that these are the suggested numbers for a team because the burden and blessing of assisting Reid is a large one and is best shouldered by many.

So - there you have the latest and biggest next wave of news and information about the direction that we are moving. There’s a lot to absorb here, and I’m sure you all will have questions, thoughts and ideas to share. Please start educating yourselves if you are so moved. I would like to ask, that if you have specific questions you might consider typing them up and sending them to me. It’s unlikely that I’ll respond - but I will add your questions to my own list, and when I get to sit with a medical person at OHSU - I will be able to cover a lot of ground. I’m sure that some of you will have brilliant questions that could really help Reid and the rest of us gain greater understanding. So, please do share them.

In terms of the Portland relocation issue - there are many many factors for our family to consider - with the housing, the care team and the expenses numbering among the top - and the impact on family, travel demands and the emotional demands entering in as well. Putting together a scenario that successfully works for Reid as well as manages the other details feels like a giant rubix cube to me right now. I know the puzzle has a solution, but I’m not altogether sure how to solve it - YET. On this topic too, I’m sure you will have ideas as well as questions. And here too, I’d like to ask that you write down your thoughts and share them with me. In the meantime, I am going to start a “perfect scenario” list - that outlines all of the things that we can identify so far - that will make this relocation the most supportive and healthy one possible for Reid and his care team.

Some of you may be wondering “what can I do to help?” My friend Carolyn  Anderson will likely be sending out an email this week with some Ashland-based items that we could use assistance with.

And for the moment, here’s a suggestion that was presented to me: Please consider writing down all of the ways you believe you might be able to support Reid and our family through this journey. (I’m going to trust here that each of us offers as much as we feel we can - and that we are capable of taking care of ourselves and won’t put ourselves in any sort of jepardy by over extending.) Knowing what our resources are - in advance - will really help our family figure out the physical management of this challenge, match resources to needs, identify weaknesses and how to shore them up.

(Need I mention how difficult it is to ask for help? Probably not. Maybe what I would be better doing is yelling from the very top of Mt. Ashland is - “THANK YOU!” Our hearts are bursting with the loving kindness you all have surrounded Reid with).

So, while all of us are mobilizing around this next phase, Reid will be marching through the steps that he has to go through. Cancer sucks for everyone, and at 19 - it’s a serious blow to one’s illusion of being indestructable. He is heroically and quietly grieving. He has been to degrees since this whole thing started, but this relocation to Portland piece brought a whole new wave of grief over him. I cannot stress enough the good medicine of being positive around him, and treating him - not like he’s sick - but with the same joy that you would if you were sitting over a meal together - or playing in a soccer match - or riding a life - or going to the movies. Each day continues to have multiple variations on the same theme. He is handling most everything that is being thrown at him, which is enormous. When I wonder how we’ll all “deal” with this, I am quickly reminded that if Reid can deal with it - then we sure as heck can too. Period.

Okay- that’s  a lot and enough for now.
With much love, Martha

P.S. Blood and Marrow Transplant Information network: www.bmtinfonet.org

P.P.S. Super kudos to big sister Bethany, who is preparing to move to D.C. for  a new job! She’s been bigger than Mt. Hood in her solid presence and care taking of ALL of us in Portland since day one. What a amazing spirit of love she brings to our family. Super hugs to second biggest sis, Megs, who will soon wing back to Spain, but dropped in when Reid most needed an infusion of laughter and quiet understanding. BIg peace and gratitude to all of you who’ve been I-5 warriors (you know who you are) - and been to hang out in the “room with a view” and our boy. Reid loves you all.

This is the "oh my god, Mom - out away your camera" look. Walking the "unit" with Uncle Michael.

Uncle Michael in his brilliance.

Biggest perk of all: Reid sweetie, Emily Steele, visits and provides loving head scratches.

Megan and Aaron Goldman, our dear friend and a fellow MARA coach with Reid,

posing as young interns...

Hence the title "Room with a View" (that's the tram platform to the right)

Reid and Megs

Pete and Reid playing WII tennis. There's a program thru OHSU and the Knight Cancer Institute that provides support to adolescent and young adult cancer patients. One form of support are games that will help get kids moving - as well as help feel less isolated during their treatment. 

Day Seventeen - September 19, 2009

Dearest Friends and Family ~
There'll be a "latest" update on Reid in the next day or so.
For now, as I catch my breath with Sarah and Ginny, and Reid savors the joyful energy of his big sis, Megan (who will soon return to Spain) and time with his dad and his step-pop,
I am sending you a beautiful meditation and a photo that offers my answer to the question: "What can you tell me about September?"
With love, Martha

~ Thursday, September 17, 2009 ~ OHSU, Portland, Oregon ~ Reid David Honeywell & his Mama ~

September Meditation


I do not know if the seasons remember their history or if the days and
nights by which we count time remember their own passing.
I do not know if the oak tree remembers its planting or if the pine
remembers its slow climb toward sun and stars.
I do not know if the squirrel remembers last fall's gathering or if the
bluejay remembers the meaning of snow.
I do not know if the air remembers September
 or if the night remembers the moon.
I do not know if the earth remembers the flowers from last spring or if
the evergreen remembers that it shall stay so.
Perhaps that is the reason for our births -- to be the memory for creation.
Perhaps salvation is something very different than anyone ever expected.
Perhaps this will be the only question we will have to answer:
"What can you tell me about September?"


~ Burton D. Carley ~

Day Fourteen - Wednesday, September 16, 2009

(Excerpts from an email to family members)

Wednesday Eve ~

Hey you all -
I've been trying to sit down and write to our "inner circle" people (that would be you guys), and then we talk on the phone - and I get deflected from writing. I'm not altogether sure why it feels so important to capture some thoughts with the written word, especially when it's so quick to send a voice message; it just does.

On the occasions that you've emailed, it's been the perfect balm in that particular moment.

It's about 4 PM here, and everyone in #1 of K14 is plugged into their respective laptops. Reid's got a video game under way, Aaron Goldman is hanging out for awhile - he's working on his grad school application - and I. We are looking forward to Jarrett and Clay's arrival with contraband hamburgers prepared in Jarrett and Daria's kitchen and the influx of energy and joy they bring with them into Reid's room-with-a-view. This "rhythm" that we find ourselves more and more familiar with, may very well be one of the strangest aspects of the whole experience. Never - ever - would I have believed that something like cancer could take on any sort of usualness, and yet - here we are. We wake, we talk with the docs, we talk with each other, we pause, we plan the day - with walks, showers, reading, meal choices, napping, screen time, quiet time, staring out the window moments, visiting with guests, going over our lists of 'things to do,' taking and making phone calls, good night kisses  - and tucking in again to rest up for tomorrow. Where leukemia gets off becoming a part of the cadence of our lives is beyond me. But that question is one to file in the box labeled "Existential Crisis" and save for another time.

Post Chemo brings deeper exhaustion each day as Reid's body copes with the wiping clean of the cancer cells in addition to everything else. He is handsome, of course, even as his face takes on more edge and intensity than I've ever seen. On the bulletin board opposite his bed are photos taken last summer. They show a tanner and much rounder Reid - and offer a quick reference guide to his nursing staff of "this is what this young man ought to look like." He's self conscious about the pole-like quality his long body has assumed, and I keep after him about eating whatever and whenever he pleases. After plenty of probing and a meet with the nutritionist, we have found that there actually are many fruits and vegies he can partake in, as well as yummy frozen - microwavable items from Trader Joe's that we have stashed in the unit's freezer with Reid's name on them.

I've mentioned that the Oncology unit is different than any other hospital ward I've ever been near. The staff - from housekeepers to CNA's to RN's to the docs and social workers - are all deeply compassionate and determined professionals. They answer questions - or find someone who can (this is not to say, by the way, that the answers always line up - but that's another topic), they are quick to respond when called, they allow more resting - as well as more interfacing, and they are very good listeners - among their many qualities. Naturally, some possess warmer personalities than others, but even in that realm - they are attuned to finding nurses who fit best with patient and family styles - and keeping/pairing them together, despite the rotating shifts that many of the RN's work of two days on - two days off. Reid now has a "care-team" in the spirit of community - building rapport and relationship - growing to know, in order to facilitate best healing possible.

I'm coming home tomorrow evening to be with the girls, while Pete will step into his gown here and hang with young Batman. Leaving Reid is hard; being away from Sarah and Ginny also makes a sore spot in my heart. Geography sorta sucks right now, but knowing that each of you are helping hold things in balance makes ALL the difference.

Yesterday, while Reid and Emily snuggled in front of a movie - and Jim did portable business, I was whisked away by Joe Dubay for a stunning autumn walk in the woods behind their house. Joe shared with me that every time he goes to church, he prays to be a better lover. !  That what we might "ask" for can be that simple -- and so perfectly all-encompassing, has been sitting like a compass in me all day long, and any direction the needle indicates is okay. We can make this journey.

It's raining now. Fog rolling across the Ross Island Bridge gives the ever flowing traffic lights a muted tone and the river looks flat and silent. Reid and I miss you. We also feel your presence - bigger than words and able to extend hundreds of miles.  ~ with love,

Martha

Day Thirteen -September 15, 2009

Posted by Michael Kane (Reid's Uncle) on Michael's Blog:

Love on the Fourteenth Floor

I just spent a three-day weekend with one of my nephews. He's 19, sweet, caring, wickedly funny and very recently diagnosed with leukemia. He's on the fourteenth floor of a new facility at OHSU in Portland, in a room with a million-dollar view, surrounded by loving friends and family and a dedicated medical team. Under the circumstances he's doing quite well.
To visit Reid you're first admitted to the bone marrow unit then suit-up with a surgical mask, gown and gloves. A gentle knock on his door gains you entry. Ironically, even with his drips in place, Reid looks the most normal of everyone in his room, the rest of us...look strange, at best.
But looks in general don't carry much weight in these sorts of environments. Medicine matters, energy levels matter, appetite matters, mood matters and love matters. Love really really matters.
If you're a regular to my blog you know I talk a lot about love. For me, everything in life is about love, one way or another. Reid is surrounded by love, awash in it really, and I can't think of anything better for him than that.
He was well loved before all of this and will be well loved long after he is healed and back to his normally active life.
And that brings me to a question. What does love look like in your life? Is it there; vital and constantly present? If so, that's as it should be. But if it feels absent, or it's somewhat there but not quite where you'd like it to be — and this is not about having or not having a relationship — then work on loving yourself. That will make the difference in the end.
Starting today would make the most sense. Waiting another day, week, month or year is what you've been doing, and I suspect that hasn't been working particularly well for you.
Self-love means that you understand everyone is deserving of love, including you. I know Reid would agree with me.

Day Twelve - Monday, September 14, 2009

Monday, Sept. 14, 2009

Dearest friends and family,

Truly, we are on the “one day at a time” track here in the Knight Bone Marrow Treatment Unit at Oregon Health Sciences University. I arrived  Saturday morning (while Scott and Pete drove South) with time to spare before the medical team's morning check up - to give Reido a thorough Mama-Once-Over (hugs, kisses, more hugs) and sit down to read through the copious notes that Pete had taken each day of his shift. Each entry recounts new information, medical terms, treatment suggestions for a variety of different “issues” that arise during chemotherapy, and reports of Reid’s interactions, questions and general progress. (For those of you who know how adept Pete is at note-taking, you will appreciate as much as I did, the nth degree to which he took his stenographer’s task.) Since my departure five days previous, I was tremendously heartened to see my boy smiling and laughing with cousins, the color up in his face, and that familiar glow in his eyes indicating attention and acuity that had been sorely missing. It was such a relief to be back in his presence, as I'm sure you all can appreciate.

So, here's some news to share:

One of the biggest issues late last week revolved around clearing the strep throat infection and getting Reid to take in more calories. Not surprisingly, as the throat pain subsided, the willingness to swallow increased, yet the chemo periodically makes him nauseated. For a few days, the docs were considering prescriptively inducing more appetite. Finally, rather than reenact an old Chech and Chong movie, Reid pulled it off on his own (although he’s still not packing it in the way fellow skiers have seen him eat between races). So, he eats - pain free - at last.  I’ll digress a bit here to note - that because his immune system is so fragile, Reid is on a “low bacteria” diet, which crudely translates to: Nothing living. YIKES! It’s a true conundrum. After all these years of feeding him yummy healthy fruits and veggies to keep him big and strong (and fight off nasty dragons like...cancer, not to mention the common cold), we’ve been sitting here for over a week with the LOW-BAC menu from the OHSU cafe selecting canned peaches and sandwiches sans lettuce. As it turns out, we weren’t quite given ALL the options in the food department - as we learned yesterday from Tim, the cool weekend nurse, that if we bring in fruit to the nurses - they’ll peel it for Reid (hence all the potentially harmful stuff will be removed) and allow him to enjoy the season's harvest. Tomorrow I’ll be out selecting magic mangos and apples from the nearest Whole Foods store.

Current challenge number two, the aforementioned nausea, is a fairly common side effect of chemotherapy. It’s an easily treated discomfort, although treatment can have other results - like sleepiness. And so it goes. The very first afternoon we were here (Sept. 4), Reid and I met one of his medical team who said to him, “I’m going to want to see you out walking as much as possible; if you stay in bed, you’ll act sick and be sick, and so I want to see you moving.” Of course at the time Reid was pretty wiped out by the strep and not interested in doing much of anything. As he has progressed through his treatment, the theme of movement has come up again and again. He is encouraged to take walks around the unit (a big loop through the hallways of this floor) at least three times a day. Well, with the throat cleared up, the food on board and plenty of us nagging (oops, I mean - cheering) him on, he’s been great about getting out there and strolling. Turns out though, walking while on chemo causes Reid motion sickness. Once we figured out this cause-effect, the nurses put a small motion sickness patch - ala pressure point therapy - on Reid.  Of greater importance today, as he officially completed the induction chemotherapy as of 4 PM Sunday, is the fact that movement therapy becomes an essential component in Reid’s healing. We’ve learned that as his body begins manufacturing new blood cells (post chemo), one of the things that he can do to stimulate that process is move. Walking, exercises in bed, gentle yoga.....all of these will increase cell production.

Reid is motivated and intentional about what comes next. Post-chemo days may be uncomfortable as his body strives to rebuild everything that has been wiped away. His physical body may feel very different, right down to food tasting unusual as even his taste buds are changing. This will be tough work for  him, no doubt about it. I wrote last week about my vision of Reid “laying down new cells” much like he would lay tracks down a powdery slope of fresh deep snow on his skis - making the run down the mountain look easy and effortless with only the practiced skill that a true alpine racer exhibits. This next couple of weeks is that time. As you all hold him in your hearts, I would ask that you particularly send him infusions of strength and grace as he creates new pathways of health in his body.

As for the rest of the family, Pete and Scott and I, respectively, are stretching to pin down alternative definitions of “normal” as we each figure out details such as: the back and forth travel across the great state of Oregon, manage family and community communications, maintain our various life/work commitments and try to keep this rocking boat steady for two younger sisters. We are getting tons of help, and we are very very grateful. If the start of the soccer season was an indicator of the Sarah and Ginny’s wellbeing, then we’re on track so far: Virginia went out to the pitch on Saturday and celebrated life with three soundly delivered goals (known as a hat trick) in the match’s first half, and Sarah thumped one of her own in the net later that afternoon in a game for AHS. The solid foundation of unconditional support that you, our families and friends, are offering and continue to bless us with is immeasurable. It’s uncanny how the gifts and acts of kindness that emerge are always the exact perfect thing - filling the need or open niche - at the exact perfect moment. At a time when I most would like to sit knee to knee with God to ask some very direct questions, I cannot deny the presence of the Divine in all of the love that surrounds Reid and our family. I thank you, truly.

I’ll try to keep checking in. It’s lovely to hear from you all via email, and I read many of them to Reid when we’re together.
~ All will be well. Love, Martha


P.S. Chronology of a situation like this is tricky - especially when the writer would like to include a few random things. I hope it comes as no surprise to learn that yes, even in the face of what feels like a supremely unfair "shit happens" situation - there have been moments of humor and profound joy. That said, here are a few random things about these past ten days: 1. Entering a large hospital far from home on the Friday before Labor Day weekend is not advised. 2. Watching a movie entitled “Pooty-Tang” really is as ridiculous as it sounds; watching it twice takes the cake! (Thanks Clay) 3. Reid’s room can house two cousins, a second cousin, two second-cousins-once removed, an uncle, a stepdad and a dad - and it sounds like a cocktail party. 4. The Mercy Flights crews are outstanding - and that business about turning your cell phones off inflight is an absolute myth. 6. Beautiful artwork and windows everywhere offer solace. 5. Dee Christlieb, who has been our family general practitioner since Reid was a toddler, is the doc who caught this. If you see him, give him a hug - or four. 6. “Family” is not defined by blood, names, history or legal documents. 7. Laughter, dancing, tears, naps, and warm food actually do make a difference.

Day Nine - Friday, September 11, 2009

Friends -- Please see Scott's message below.
----- Original Message -----
From: scotth
To: Carolyn Anderson
Sent: Friday, September 11, 2009 9:17 PM
Subject: Friday night

Hi Carolyn; What could be more unexpected than a blazing September sun? Kohler Pavilion's own wonder boy: lucid, laughing and practically himself again. Post remission survivors of every stamp tread these halls paying homage to the cancer gods. Boy howdy! Ditch the gown and IV stand and Reid could be one of them. All in good time. What fun to see him in good spirits. Martha returns tomorrow flying over Eugene while Pete and I, cruising along far below, anticipate a mid-day arrival back in Ashland and another of Sarah's soccer matches. Thanks all. Your prayers have hit their mark. Scott   

Day Eight - Thursday, September 10, 2009

Thursday, September 10th

Dear friends and family -
I'm shooting for a thorough update here, I hope I can answer the many questions you may have swirling around. I know that some of you are receiving an email about this for the very first time, and this email will come as a huge shock. I'm sorry for the delivery - and urge you to read through the attached emails and updates previously sent - so that you can bring yourself and loved one around you "up to speed." (A history if the email updates pertaining to Reid are attached here with the very first one at the bottom - and then up the page chronologically.)

As you may know, Reid David Honeywell, our son-brother-grandson-nephew-friend, was diagnosed in this past week with Acute Myeloid Leukemia, of which there are seven "types." The type that Reid is battling will soon be revealed with specific chromosomal testing through a bone marrow biopsy taken last Thursday. Biopsy results take time and study. With the "type" identified, Reid's medical team at Oregon Health Sciences University (OHSU) are presently and will continue to determine his course of treatment, maintenance and healing. Regardless of this deep science, they knew enough five days ago to proceed with Induction Chemotherapy.

Induction chemotherapy lasts 7 days. Then, there is a three day "rest," and at day 14 - another bone marrow biopsy is taken. Throughout this period of time, the docs are watching Reid's every response - to the miniscule - to help determine all of the best ways to support his healing. With all of the variables (labs done every 8 and 12 hours and their results, side effects of the chemo, Reid's morale, any and all potential infections and his ability to fight them off) - things are constantly in flux. At day 28, another bone marrow biopsy will be taken. Between 14 and 28 - treatment will depend on all of the aforementioned variables. The Docs  want to keep Reid at OHSU because of the level of care that is necessary as well as the extreme risk of infection that exists with people dealing with AML. The email below that Scott wrote addresses this very well. Additionally, Reid's nurse (whom I talked to a couple of hours ago) put a fine point on the infection risk concern with this warning: "The main thing we need to watch for is infections. Visitors must be 100% respectful of this situation. Anyone who feels sick, feels that they're becoming sick, or even has been recently exposed to someone who is sick MUST POSTPONE their visit to Reid until they feel better. No exceptions."  (Note: If you find yourself in the postpone category right now - you can send him care packages, letters, fun things to pass the time, emails, text messages. If you're on skype, you may get lucky and catch him while he's on the internet and actually be able to see him through that avenue.)

Reid's lead resident Doc said to me three days ago, the hardest part of AML for family and patients is that they want definitive answers and a direction to proceed, but in fact - it's impossible to provide that with AML because Reid's state will be changing continually. What we know - besides the medical science - is that this highly trained and cutting edge medical team is treating a 19 year old healthy young man - who doesn't smoke or drink, is athletic, and has a fantastic health history. Statistically alone - Reid has everything on his side. What we know emotionally and spiritually - is that they are treating a gentle, loving, vibrant person - who has the ability to focus on what he is passionate about, make things happen that are positive and has a huge network of love and support around him. He's going to beat this - and he's doing it now.

Nurse Diane also told me this morning that Reid is handling the chemo really well. His labs all look normal. He's has a bit of nausea, but they are controlling it successfully so far. His appetite is down, and they've pep talked him about that, asking him to please TRY to eat as much as he can. If there isn't a big change there, they even have prescriptions for stimulating his appetite - which they'll use if necessary.

On the emotional level, Reid is experiencing what they call "common" especially in people his age - (especially young men). While his demeanor is better today than yesterday, he's processing feelings of anger and loss of control. He is grieving the loss of the life he knew as "normal." He has occasions if withdrawing and not wanting to engage. The staff at 14K in the Knight Bone Marrow Unit are extremely tuned into all of these aspects of AML patients. When they talk to Reid and interact with him, they are giving him lots of information and educating him, which I'm told Reid really appreciates. The more he knows and understands, the more "normalcy" this has for him - and knowledge gives him - (and the rest of us) a sense of more control.

I was with Reid from his emergency departure from Medford by Mercy flights to Portland last Friday until Tuesday of this week, while Pete wrangled the girls and the start of the school year. Scott hustled up to Portland  on Monday, and he and Pete have been there this week while I came home to check Sarah and Ginny. In the next twenty four hours, we'll all be "swapping around" again. We'll keep this up - along with the support of other family members - for as long as needed. The presence of Emily Steele, Reid's girlfriend of two years, this past couple of days has been very positive for Reid, and we're hoping she can find a way back to snuggle up with him before she starts her freshman year at SOU. His buddies from Ashland are organizing for a visit soon, which I'm certain will have him smiling. Portland is a far piece to travel, and we're grateful to any and all of you who can peel away to be an I-5 road runner. Please be sure to network with one another - as there may be great opportunities for ride sharing. Likewise, I'd love an email when one of you thinks you're traveling North - so that if someone in the family wants to hitch a ride, we can. I'll respond if it's needed, otherwise - if you don't hear back - figure we're not in need at that time. Thanks.

We have experienced an outpouring of love and support that carries us continually like a warm wave. Carolyn Anderson - with the guidance of Jim Schlight  and Karen O'Dougherty (close friends) - have put together a calendar of family and as-close-as family "teams" that are signed up to be in Portland to offer round the clock support to Reid and whichever parent is with him - myself, Scott, or Pete. Meanwhile, Christiane Pyle (mama of little sister Virginia's best friend) is coordinating meals in Ashland to support Sarah and Virginia with which ever parent they find themselves home with. My family - Phelps, Davidson, Freidl, Kane, and Cotton -  and Scott's family - Honeywell, Bliss and Posner - have all rallied and found their special ways of being present and supportive to Reid and one another - at what always seems to be the perfect moment in just the right way. Some of you have answered phone calls at 1:30 AM or closer to dawn, some of you have wept with me over the phone - which, believe it or not - has allowed me to offer comfort to you - in ways that have given a sense of purpose during this time of overwhelm. It would be nearly impossible for me to recount every act of kindness and the name of each person who has acted, emailed, called, texted. given something, offered a service, or wrapped their arms and hearts around us all. I'm sure, as this journey continues - I will think of you all at random moments - and I will remember what you've done - or are doing - and my heart will expand because of that recollection. Please accept this humble "thanks" - on behalf of Reid and  our whole interconnected and beautifully mixed family. Also, please count this as a "thanks" deposit - to draw on at any time in the future.

I enjoy receiving your emails very much - the best one to send to is mphelpscotton@gmail.com. ALL of our phone #s are now cellular - which means that the least expensive time for us to take calls is when it's FREE (after 9 PM and on weekends). I do have unlimited texting - so go for it.

I love you - and thank you. ~ All will be well ~
Martha


Christiane Pyle 482-8159 (Dinners for the girls coordinator in Ashland)
Karen O'Dougherty - odough@charter.net (info.)
Carolyn Anderson - anderson@abklegal.com (email updates)

Mailing Address:
Reid David Honeywell / Unit K14
OHSU
3181 S.W. Sam Jackson Park Rd.
Portland, Oregon 97239-3098

Reid's email: reiddphelps@gmail.com   Yes, he has his laptop and internet access!

P.S. On a technical note. Those of you who know me know that I rarely send emails with visible addresses. Please forgive the public display of your address, as I am attempting to allow our friend Carolyn to collect all of the addresses that I haven't been able to access until now. She will be adding these into an undisclosed address group that will be used from this time forward. Please forgive duplication emails this time around also. Feel free to forward this along to friends of Reid and our family. Also, some of you know one of Reid's sisters a bit better than you know him - this email was sent to you so that you could know what is going on in their lives.

Day Seven - Wednesday, September 9, 2009

Hi, folks.  Below is a forward of the latest message from Reid's dad, Scott, who's been up in Portland caring for the lad.  Scott's mom emailed me a message yesterday, which read, in part, that "When [Scott] arrived and saw Reid for the first time he said it felt so good to hold him in his arms. And [Scott] was pleasantly surprised at how much better [Reid] looked than he expected."  I like the sound of that!
Carolyn

----- Original Message -----
From: scotth
To: Carolyn Anderson
Sent: Wednesday, September 09, 2009 4:39 PM
Subject: Re: Reid's Status 09.08.09 (supplemental)

Hi Carolyn; here's a few lines from this afternoon.

Hi All; everyday, newness, hopefulness and more cleanliness--the ultimate now: 14th floor. Bone marrow transplants take disinfecting to a heightened state of alert, which doesn't necessarily pertain to Reid as his "family" of Acute Myeloid Leukemia types has yet to narrowed down from 7 to the nasty culprit that got him into this fine mess (hopefully to be determined by weeks end). But since he has arrived, protocol is critical for everyone, possibly disqualifying more than one of his chums scheduled to hit town en mass come Sunday. Coughs, colds and runny noses have to wait outside.
Until today, nothing could have boosted Reid's spirits so well as a girl friend's gentle embrace and if kissing through one of those scratchy masks was possible Reid and Emily would surely have discovered it by now. Reid's social worker, Keren McCord offered insights yesterday and today while Pete, daughter Bethany and I shared habits, traits and character flaws. Once finished with ours we dug up a few on Reid and Emily. What turmoil their young lives have found. Our hearty clarion optimism trumpeting on high will fall on tender ears 'til time makes all things clear. Meanwhile, dear ones, keep those cards and letters comin:-) The dad.

Day Five - September 7, 2009

Greetings!  I just spoke with Martha, and I have a bit more substantive news re: Reid's status.
Reid started chemotherapy last night.  It really knocks him out; he's sleeping a lot.  Please keep this in mind if you're visiting (as opposed to staying at OHSU as a caretaker).  Longish, chatty visits can be exhausting.
The strep throat is still a bit of a bother.  The docs have Reid on heavy-duty antibiotics and they're hoping for a result soon.  The strep has made it difficult for Reid to eat any solid food for around one week.
A more definitive diagnosis has been made, although we're not crystal clear just yet.  The docs are certain Reid's dealing with acute myeloid leukemia (AML), but there are seven sub-types of AML.  They think he's looking at either type 4 or type 5.  We'll know more when the bone marrow biopsy comes back.  The long weekend is having an impact on staffing at the hospital, and the tests take time even when fully staffed.
Yesterday (9.6.09) was Day One of chemo.  He'll have seven days of treatments, and then be allowed to recuperate.  On Day 14, they'll do another bone marrow biopsy and determine at that point what further treatment is required: more chemo, perhaps something else.  On Day 28 there'll be yet another bone marrow biopsy to evaluate how the treatments are working.
If yesterday was Day One, and he's in for at least four weeks after that, we need to extend the care calendar into October.  I would like to get folks signed up through October 4, which would be Day 29 on the chemo schedule.  Please look at your calendars and let me know who can do what.
I'll be meeting with Martha when she returns to Ashland soon, and I'll put her days in the calendar as well.  The goal here is to have at least two caretakers present at all time, so that they can relieve each other and keep watch.  Martha will no doubt be there the lion's share of the time, but we want others present in order to provide support for both Reid and Martha.
Scott will be in Portland today, and Karen O and Pete will be travelling north as well.  Pete will be there through Friday, when Michael Kane (David's partner) will come up from LA for a few days.
Best to all,
Carolyn

Day Four - Sunday, September 6, 2009

Dear ones~  (forward this email as you like)

Sunday afternoon, and although part of me cannot fathom this fact - we're actually settling in here. How can that be? And how bizarre is that? At any rate, it's true.

Today we received the definitive diagnosis of Acute Myelo Leukemia. There are seven types of AML - and which type Reid will be beating is still a question that waits for the lab to answer. The type is based on chromosome differences, and may steer the direction of treatment along this journey. (For more details about AML, please research online - Carolyn offered up a useful website in one of her earlier emails. And, I am reminded by a dear friend in the medical profession, to offer that you remember that the internet is a great tool - AND - it's the docs who have been through the years of training that answer our questions and know Reid and his particulars - who are our strongest resources).

He will start chemotherapy tonight. It lasts for seven days and, as I understand so far, it involves two medicines - one that is given for the first three days, and one that is continuous for all seven days. Chemo will essentially kill all the cells in Reid's bone marrow (where cells are produced). We're going to wipe the slate clean so that beautiful, mature, healthy cells can come back and take up residence in Reid's strong body. I have this image - for Reid - of a big, steep ski slope covered in several feet of freshly fallen snow - powdery and glittering on a very cold and "bluebird"  bright January morning. The snow has wiped away all traces of other skiers tracks, and now Reid gets to make fresh grooves - alone, with the wind on his face and nothing to consider except the feel of his body on the skis and the energy and strength of his body as he gracefully flies down the mountain. This is what he and his new cells will be doing when the AML goes into remission after this course of chemotherapy. And for those of you who have ever seen him race, I know you can close your eyes and see him too. He's such a physically beautiful skier - moving more like a classical dancer - agile, smooth and moving as though without effort.

Tomorrow Reid will move up to "unit" 14K. The 14th floor is the bone marrow oncology center, and - it has a youth center, where Reid can play WII and ride a stationary bike, among other things. He sniveled a bit about how he can't expect to meet anyone interesting there - because all they're going to have in common is cancer, and then the nurse told him that Lance Armstrong was treated here. Boy, that stopped the sniveling in a hurry! So, now he's looking forward to the move. These two floors of homotological oncology are VERY infection careful. When you come of go from the sealed unit, you hand sanitize. Then to get into Reid's room, you do it again - as well as put in a thin papery gown, a surgical mask, and latex gloves. Yesterday, Jarrett and Daria (Davidson cousins), Stefan (Ransom cousin), Bethany (big sis), and Uncle Dennis were all lined up along the couch in Reid's room looking like the biohazard easter egg team, with their pastel colored gowns on. We thought a little glitter glue and some colored sharpies might be in order for the masks, too. Although - I'll tell you that one gets pretty good at seeing the smile on someone's face in their eyes - when a mask is covering their mouth.

This process is both describable and indescribable. I can report the nuts and bolts easily (though it's challenging to relay the medical terms - there is such a HUGE volume of information being thrown at us all the time). Our thoughts and feelings are harder to pin down. There's overwhelm, sadness, anxiety, frustration, shock, a sense of injustice - while nearly simultaneously, there is determination, hope, focus, positive intention, tenderness, forgiveness, patience, courage, love and gratitude. We here - feel all of you with us in some way. I know I will be saying thank you to you all over and over for the rest of my life, and I'm deeply honored to do so. While Reid is appropriately focused on and engaged in his main job - healing and moving forward with his incredible life, all of our family (I believe I can speak for them) and I are focused on standing next to him while he does his job. Your love is a source of strength to each of us.

The girls are resiliently doing their thing. Pete's home with them now, and thanks to all of you and the amazing schedule Carolyn has created for us, we will trade off being in Portland and Ashland. I miss them very much, and can't wait to gather them into my arms for a few days this next week when I head south for a short break.

Other than all this - what I can tell you too - is that your emails are fantastic! I love getting them. It's wonderful when I get to peel away to get internet (we can't get it in the room, I have to go to the 9th floor to cut/paste/and send this) ,and I open my gmail account - and there are all these tidbits of loving kindness -short or long, they're appreciated. I also have found text messaging to be incredible (you can thank Sarah for talking me into that two months ago!) It's much easier to receive and read a text than go through the voice mail steps. This information age certainly helps in cases such as this....whew. If you want to send something to Reid, I'm fairly sure OSHU has a website with mailing address info. and contact instructions. He can't have flowers or plants in his room, but he loves funny cards and interesting pictures and images of all types. He doesn't want folks to spend money on him.

I'll stop back by sometime soon and fill you in on how the treatment is progressing. I love and respect and celebrate each of you - yours, Martha


What’s Left 
(for Peter Hennessy)

I used to wait for the flowers,
my pleasure reposed on them.
Now I like plants before they get to the blossom.
Leafy ones – foxgloves, comfrey, delphiniums –
fleshy tiers of strong leaves pushing up
into air grown daily lighter and more sheened
with bright dust like the eyeshadow
that tall young woman in the bookshop wears,
its shimmer and crumble on her white lids.

The washing sways on the line, the sparrows pull
at the heaps of drying weeds that I’ve left around.
Perhaps this is middle age.  Untidy, unfinished,
knowing there’ll never be time now to finish,
liking the plants – their strong lives –
not caring about flowers, sitting in weeds
to write things down, look at things,
watching the sway of shirts on the line,
the cloth filtering light.

I know more or less
how to live through my life now.
But I want to know how to live what’s left
with my eyes open and my hands open;
I want to stand at the door in the rain
listening, sniffing, gaping.
Fearful and joyous,
like an idiot before God.

~ Kerrie Hardie ~