Day One Hundred Ninety-One: March 15, 2010

Dearest Friends and Family -
It’s the end of a long day that started in Portland and included the long-awaited follow up consult for Reid with his leukemic doctor at Oregon Health Sciences University.

It’s been one hell of a long haul since September 3, 2009. One hundred ninety-one days, five courses of chemotherapy, hundreds of road miles, thousands of tears, millions of prayers, and so very many of you who have stepped forward in so many ways  - over and over - to love and support Reid, his sisters and our family. It’s been a math equation that has included variables like sorrow, hope, courage and connection, and the present sum - Love -  is incalculable.

The news: Reid is in complete remission, and he has been encouraged to resume his life. Today this amazingly strong young man, of whom we are all so tremendously proud, graduated from being a cancer patient to being a cancer SURVIVOR!

Are there details? Of course. He will be more tired for a while and will need six or so months to completely recover his strength; he will have regular lab work as well as follow up visits with the folks at OHSU. We were told that Reid has made it over a major hurdle, handled his treatments exceptionally well and is truly in great shape. The longer Reid remains in remission, the lower the risk of a relapse;  so, while Reid is still on a journey of unknowns, this is the very best place Reid can be in at this point in time.

Please celebrate! Not just for Reid, but for yourselves, the way each of you have shown up with generous hearts full of hope, and the love that helps keep us in faith and inspires more prayers.

And please honor too, those whom we have lost to cancer and all those who intrepidly continue learning how to survive and live fully in each moment.

With bursting heart, I believe -
all will be well.
~ Martha

(Photo taken a week ago.
Clowning around and playing "dress up" for Oscar Night,
and Reid consented to being his mom's escort.
How's that for a nice son?)

Day One Hundred Seventy-One: February 23, 2010

Dear loving Friends ~

The last time you heard from us was just prior to Reid’s fourth chemo round (out of five total). I confess, the will to write to you these past couple months waned as Reid’s focus and physical experience narrowed down to the basic, yet very complex and serious reality of surviving chemo.

Our Christmas season was a time of tremendous gratitude and more playfulness than I remember since the kids were very young (glow in the dark frisbees, rubber band shooters and stomp rockets, oh my!), while we simultaneously learned the more intimate, painful and far less socially-acceptable-to-discuss details of life with cancer.

Suffice to say, Reid weathered storms of horrendous nosebleeds that would awe Muhammad Ali, has done some deep sleeping that would make Rip Van Winkel look like an insomniac, regularly ran fevers that would inspire Gabriel Fahrenheit, received enough units of whole blood to qualify for an Edward Cullen award, and with the exception of bemoaning the nearly terminal, supremely boring days of being trapped in the hospital for treatment, should now have special privileges to use Superman’s best cape.

Now that Reid is on the “other side” of chemo, we’re preparing for new information and hopefully some positive and forward-motion life changes. A new bone marrow biopsy will be taken soon, and a follow up consult has been scheduled with the medical team at OHSU. While we could attempt to speculate about everything related to this leukemia, we try not to. As we have learned from the very first day: this is a step by step process - not to be guessed at - not to make assumptions about - not to compare to anyone else’s - but simply, to be aware of and attempt to remain as present as possible with in order to learn, cope and live fully.

And in and around the unknowns, Reid is - as I write this - on campus at Southern scheduling himself into some spring quarter classes. Gram and Grampa gave him a one month membership at the YMCA today - to help him get those long legs strong again, and we’re gearing up some integrative healthcare to help support his system in alternative ways. For me - the mama - Reid is one of my greatest teachers. In the practice of remaining positive, he rarely falters in his focus on being upbeat and is particularly adept at looking right past cancer toward a long and healthy life.

I’ll keep you in the loop as it widens and there is news to share. I enjoy hearing from you, by the way.

The love and support of our community has been and continues to be  a source of amazing strength and blessing to our little family. “Thank you” isn’t enough...so I send you my deep and abiding love and wishes that all will be well for you and all whom you hold dearly.

Yours very truly, Martha

Three important postscripts and a personal note:

PS #1. The bed that was loaned to us for Reid was called back to its original home. We are seeking - ASAP - a clean, comfortable, affordable double (full-sized) bed and hopefully some sort of frame. If you have a lead -or better yet, a BED, please let me know.

PS #2. In April or May, Reid would like to move out on his own - relaunch! If any of you have or know of someone who has an studio apartment within walking distance of SOU for my determined and very respectful son (yes, I’m biased), please let us know. He has a small disability stipend and is eager to try out being independent. References can be drummed up by the handful!

PS #3. The LIVESTRONG foundation is, in a word: AMAZING-BRILLIANTLY EDUCATIONAL-AND TOTALLY COMMITTED to raising awareness about and taking action against cancer. Please click this link to the world’s largest dedication book and sign the page for Reid as someone who inspires you to fight cancer. (And forward it to your friends!) LIVESTRONG is using this book to press for urgent action on the global cancer crisis.

Personal Note: In January, I committed to keeping a live journal - otherwise known as a blog - through my studio website. It explores many topics and styles of creativity, including a some more personal experiences I’ve had as the mother of a child with cancer. While I choose not to get too deeply into the nitty gritty of Reid’s situation in these updates or on his community support website, my blog is less (though admittedly, still) guarded. If you’re curious - brave - or both, check out these - or other posts:  Please Drain Tub, Everything Essential, What NOT To Say To Someone With Cancer, or Tales That Defy Words.

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.