Day Nineteen – 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: http://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.

 

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.

 


About Martha Phelps Studio ~ creative on purpose

...a meandering journal of a changing life and the unexpected graces it brings. Earlier posts may provide some history, but this series of writings aren't likely to follow a straight line as I explore topics such as raising kids, making choices, self discovery, the impact of change on a family and how to (hopefully) live with balance and purpose. www.marthaphelps.com
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