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Past Updates & Details (most recent first)

November 15, 2006 Marc becomes ill with what we think is the flu but which turns out to be a very rare and aggressive blood cancer. He goes into respiratory failure, is not expected to live, but survives due to his last hope, an oscillating ventilator. Doctors call his recovery truly “a miracle.” November 27, 2006 – May 2007 Marc receives chemotherapy in preparation for a bone marrow transplant. Linnea, his sister is not a match. The search for a donor is extended internationally as Marc’s genetic markers are difficult to match. A donor is found. A stem cell transplant is scheduled for March 23rd. March 16, 2007 Marc’s donor is found to be in ill health and cannot donate. A new donor must be found.  A new transplant is rescheduled for May 10th. May 3-10, 2007 Marc undergoes intensive chemotherapy and full body radiation at Vancouver General Hospital, in preparation for the second donor’s contribution of stem cells. Photos from the Hospital. May 11, 2007 The new donor’s stem cells are flown to Vancouver and Marc receives them through transfusion. May 21, 2007 Marc begins engrafting, the term used to describe the exciting yet dangerous process during which the body both accepts and rejects the donor’s blood cells. The donor’s healthy cells help Marc to begin producing his own new healthy blood cells. He moves into the next critical healing phase: 100 days of continuing engraftment. May 24, 2007 Marc is given a pass to spend evenings at home, returning to the hospital during the day. His engraftment begins to take hold remarkably well. May 28, 2007 Marc is discharged from the hospital and makes daily hospital visits to check blood cell production levels and overall health. He will continue recovering at home under the care of Nurse Mom, Sharon over the next year.

May 8, 2009 Update 20 View September 4, 2007 Update 19 View July 29, 2007 Update 18 View July 12, 2007 Update 17 View July 2, 2007 Update 16 View June 14, 2007 Update 15 View June 7, 2007 Update 14 View June 1, 2007 Update 13 - Mark at Home!!! View May 24, 2007 Update 12 View May 21, 2007 Update 11 View May 13, 2007 Update 10 View May 9, 2007 Update 9 View May 6, 2007 Update 8 View May 4, 2007 Update 7 View April 27, 2007 Update 6 View March 14, 2007 Update 5 View February 27, 2007 Update 4 View February 20, 2007 Update 3 View December 22, 2006 Update 2 View November 30, 2006 Update 1 View November 22, 2006 Message from Jeff Bodé and letter from Marc's doctors View

Past Updates & Details (most recent first)

September 1, 2014 - Update 21

It has been some time since I posted an update.  If you are a new visitor, I’d like to start with a summary update: 

My name is Marc Alan Shapiro and I BEAT CANCER.  Just over 7 years ago I had swollen lymph nodes in my armpit, was feeling awful and went to the hospital.  During surgery to examine the lymph nodes, due to lung and breathing issues, I went into acute respiratory distress syndrome (ARDS), and was in an induced coma for two weeks.  Doctors suspected cancer, and after a blast of chemo my lungs started to clear up -- I awoke to news that I had cancer - Stage 4 peripheral T-cell gamma delta (non-Hodgkin’s) lymphoma, one of the rarest, most aggressive forms of cancer.  Doctors have little experience with this form of cancer, and I was told that I needed to realize that the prognosis was very grave.   I went through regular sessions of chemo for 7 months (GDP/CHOP), and after finally finding a stem cell donor match from Germany, began the transplant journey.  My wonderful donor was an 8/10 match, and the particular markers that correlated for us were actually the worst match that can be given to a recipient.  Still I am SO VERY grateful to my donor, Ena.  Prior to the transplant --3 days of high dose chemo then 3 days of full body radiation, then the precious stem cell transplant.

During recovery, I was off work as a fire fighter for two years.  During those years, with the support of family and friends, and an incredible mother, I worked hard to build physical strength, spiritual strength, and mental agility.  My sister Linnea was there for me every step of the way. I experienced very little GVHD  (rejection)  which was a shock for my doctors.  Cancer free now for 7 years on May 11, 2014!!  I have been back to work stronger than ever and have recently been promoted to Lieutenant at the Vancouver Airport Firehall.

The blessings continue.  In 2011, I married beautiful Pamela Jacek, who has been my rock.

I want this site to be a place of inspiration, education, and a place where visitors can ask as many questions as they like! (I am an open book).  Through the entire cancer experience I met so many wonderful people and was surrounded by the most loving family.  I think the power of positivity was the reason I kicked cancer’s ass. 

 

May 8, 2009 - Update 20

It has been over a year since my last update and so much has happened. Since my bone marrow transplant on May 11, 2007 I have accomplished pretty much everything I have set my mind to. For those new to my site I will give a brief update on my situation; I was diagnosed with Peripheral T-cell Gamma Delta Non-Hodgkins Lymphoma in November of 2006 -- I know it’s a mouthful. I fought through some major surgeries and a 9 day induced coma. After returning home from the hospital I continued with alternating sets of CHOP and GDP chemotherapy for about 6 months or so. I received an 8/10 unrelated bone marrow match which is the lowest match they will give. My odds may have been bad but never did I think this would not work. Always a smile, always knew the blood would take to my bones, and always knew I would get to live my life full of love. My transplant went as planned and was as hard as they said it would be. I find it so amazing what the human spirit and what love are capable of getting you through. My mother was able to move in with me and be my in-house nurse. After the first year of recovery things got dramatically better. I started to concentrate on getting back to my job as a firefighter and was able to hit the gym and start my vigorous work outs. My Aunt took me on a retreat spa vacation that helped heal my mind and spirit. I started back to work in November 2008 and have been full time ever since. I still have a minor GVHD (Graft versus host disease – normal in transplant recipients) of my skin but it should pass. If this site does anything I would hope it will reach people who have a similar challenge and realize your mind, heart, and will to enjoy the rest of your life is very powerful medicine. I would also love to answer any questions anyone has about my experience. I am an open book and would love to help. I will try to also post some links that may be useful to you or your family. Thanks for stopping by.

I would like to thank a few individuals -- my mother for everything she is. My sister and Aunt Bonnie for always supporting me and my decisions whether they were good or bad and giving me tons of love. Alexandra for being my rock and making me feel beautiful through the entire process. Mike and Dan for their supportive friendship to my family and me. There are so many others that deserve to be noticed and I hope in your hearts you know who you are. I love you and thank you for helping me fight my battle and regain my amazing life.

 

September 4, 2007 - Update 19

WELL!  It's about time for an update. This will probably be the last "formal" one as Marc is doing SO WELL. His 100 days came with the bone marrow results negative for cancer. All of his symptoms and issues are related to the effects of the treatment he went through and the meds he’s presently on.  The prednisone taper has been difficult with nausea and exhaustion daily. Of course Marc has pushed the taper faster than the doctors would have it. He wants OFF that nasty (but effective) drug. Currently he is at 5mg daily and is only reducing 2.5mg a week at the endocrinologist’s advice. He did a reduction of 5mg a day for three days in a row, twice during August with much tsk tsking from Drs and mom. Now that he's at such a low dose he's willing to listen to reason and take it slower. Last week, HURRAY, they removed his central line. The Hickman catheter and he have graduated to blood draws weekly with outpatient visits to his lymphoma doctor Julie Lavois. She is very pleased with how he's done and will do a review of systems with us on September 11. They do post transplant eval of all physical symptoms to monitor progress (and I'm sure to use for research). The risk of post transplant GVH (graft versus host) continues but the first 100 days are judged the most life threatening. NOW we believe for unhindered quality of life with Marc experiencing full return of his health and vitality.  His spirit and energy are positively directed towards that goal. He continues to inform me – Don't worry; GVH is not going to happen. His hair is growing back. He's losing some of prednisone fat. I am so thankful for the way things have gone. If I haven’t written this in the letters past, I want to again thank each and every one of you who sent positive thoughts, donated hours or money to the cause, focused prayers, or came to Vancouver to help in some way during this ordeal. We COULD NOT have done this without all the support. Well...we probably could but would have suffered miserably. You have all been part of a miracle. That's what the doctors have called him. Initially it was a miracle he even survived the ICU. But now…his post transplant recovery has been amazing. So many things could have happened as a normal result of transplant that did not. We thank God daily and believe there is a reason, some beautiful reason, Marc is still alive and with us. Oh yes, and I'm back at home in Bellingham becoming reacquainted with my life. Back to work today. 

Love and hugs. Sharon and Marc.  PS no news is good news from now on.

 

July 29, 2007 - Update 18

Greetings,

This may be my last stretch of days up here with Marc if all goes well. The latest on the Marc front was a stomach upset this last weekend that meant constant nausea, no emesis, with extreme tiredness.  Of course I worried it could be GVHD as that could be one of the causes ... BUT it passed in three days with no diarrhea and Marc is back to his normal eating whatever he wants without problem. We also read that Prednisone taper can cause side effects that include nausea and exhaustion so we also wondered if it could be that. When his Prednisone was reduced to 40 mg/day Marc started to feel tired, and I surmised it was due to finally feeling the effects of what he's been through rather than being on the Prednisone "high".  He also had some really sharp epigastric pains that resolved with tums and and increase in Pariet, his "acid blocker" medication. So the taper is proving challenging. Marc says that he can deal with whatever, he just wants off the Prednisone. His Dr. is wanting to progress at a slower rate than before ... so for now Marc is on 35mg alternating with reducing dose starting at 30mg every other day. They will taper in 5mg increments every other day until he is at the 35mg every alternate day only. Then they will taper the 35mg dose down till he no longer needs it. Prayer for all to proceed with no GVHD rearing it's ugly head is my request. You will all be pleased to hear that Marc is more and more himself. His energy is positive, he refuses to even consider anything but steady progress towards complete health. He gives me pep talks so I won't think like a nurse ... that's a hard one for me but I'm doing my very best. No more meds to help him sleep. He has learned how to hang his own IV Gancyclovir so really does not need me here to do that anymore (he will demonstrate doing it on his own tomorrow AM with no prompts). So I will be home more. Call me there ... Hugs, Sharon.                                              

Please put August 19th on your calender for a potluck picnic here in BC at Riverfront Park for Marc's 100 day celebration.  Marc will be posting all the info when he has the details down (click here) ... but that's the plan so far.  Cheers.

 

July 12, 2007 - Update 17

Great week!!! Marc has done well the last couple of weeks and was reduced on the Prednisone to 50mg/day on Monday. That was a 20mg decrease rather than the anticipated 10mg. YAY  :-)  He is one happy camper to say the least cuz he wants OFF the meds. He decided to stop using Ativan to aid with his sleep, and wanted off the Seroquel, also used to aid sleep, as he was just too groggy in the AM and did not like feeling drugged. So after a night awake without meds the docs decided to try Trazadone 25mg (my thoughts were along this line also), and it works much better. He is a little bit of a snappy crabpot with the med changes but does acknowledge this with multiple apologies. Accepted. Due to the progress and his improved energies we are starting to wean him off his mother's assist mode. I will be here Monday through Thursday to do his home IV meds, but only on call otherwise untill after day 100. It's really something to have time home in my own home with Jeffrey and not be preoccupied with Marc. I have a life, after all, and am thinking that I will be able to return to work the last few days of August. The Doctors and nurses tell us that Marc's progress is amazing for someone with an unrelated 8/10 mismatch. It would be expected for him to experience a whole slew a problems we don't even want to think about. So, THANKS to each and everyone of you, your prayers and visualizations of total health are being realized. Love and hugs, Sharon and Marc

July 2, 2007 - Update 16

OOOKAAY.....So today is day 51 for Marc,  we're on the downhill side of our 100 day countdown. This last couple weeks have been a blur. Marc had rising CMV counts so did a stretch of twice daily gancylovir x 5 days with daily doses following to keep it in check. That worked until last Thursday when his counts started to rise again. He's at risk for CMV due to the immunosuppression which is being weaned slowly ... i.e., Prednisone is now at 80 mg daily and will go down 10 mg on each Monday until we reach 20mg. CMV is a virus that could cause major problems with infections in the lung, gut, or liver. And ... it can be fatal. Whew! Coming down on the prednisone has caused major pains in his knees, thighs and backs of the legs. So immunosuppression is needed to prevent rejection, and in turn increases risk of infections. It's been daily or twice daily to daycare until last week when they decided to put me to work and let me run a few of the drips at home. We're a team and we continue to appreciate all the love and prayers. Hugs to one and all, Sharon

All I want to add is that I’ve been waiting and waiting for Marc to be in the mood for pizza, and I finally got to make him a few pies tonight before coming back to Bham.  Of course, I baked it pretty crisp, nigh unto burnt, just to be safe.  jj

June 14, 2007 - Update 15

Another rough week, but things are finally looking up.  Marc was treated for GVH of the skin, with a med daclizamab ($1700/dose/x5) with good results.  His skin is starting to heal so we are happy.  Bad thing is GVH means that they will wean the prednisone VERY slow... he's at 100mg/day and they will start decreasing 10mg/week starting next week if all continues to look good.  Prednisone means he does not sleep at all, or at least not more than an hour or two at a time... which is not enough for a body to feel rested EVER.  He's tried all kinds of sleep agents which have some minimal results ie sleep of 3-4hrs/night, but with the aftereffects of feeling hung over and NOT HIMSELF.  I see a vast improvement in his mood now that he no longer has fevers and progressing GVH.  He is just more Marc, that good energy that bubbles.  So we will continue to try various permutations of sleep remedies in the hopes one of them will work.  When you think of Marc, see him strong, healthy, vibrant, and ASLEEP :-)   hugs Sharon and Marc

June 7, 2007 - Update 14

Boy, is getting well tough, and weird, or what?  Since last night Marc has had a rash, which the docs say is due to acute graft-versus-host disease (aGVHD). Yet, the docs are unsurprised, and continue to be quite pleased with Marc’s progress.  They expected and desired aGVHD but say they must control it.  Since a hospital visit this morning, Marc is receiving some new drug for that purpose, but meanwhile the docs cannot continue to wean him off the prednisone he has needed, a med that grossly interferes with his attempts to sleep. 

Why? – The desired effect is that the donor’s T-cells competently hunt down and kill any cancerous cells lurking in Marc’s tissues.  The hunt cannot be seen in real time.  However, these T-cells have now recognized some of Marc’s healthy tissues as foreign, one effect being this rash, which can be seen.  So the rash is also a good sign, for it proves the presence of immunologically competent cells in the graft.  But if left uncontrolled, the effects can get worse than ugly.  That’s why the docs both want and must control aGVHD.  This process is hard, even for a hardbody like Marc.

You know what to pray for.

jj

June 1, 2007 - Update 13 - Mark at Home!!!

Well...  This was quite a week.  Marc was allowed to go home on pass starting last Thursday (May 24th).  His numbers had taken an impressive jump,  meaning his bone marrow was producing WBC's and neutrophil's.  He still was not sleeping more than an hour at a time and he begged the Dr to PLEASE let him sleep in his own bed.  His lip quivered impressively when he asked...  and it worked.  Four nights out on pass with days spent on the unit getting fluids etc. and on Monday (May 28th) he was discharged to day care.  Now that's a record.  Marc was discharged on day +17 (from the stem cell transplant on the 11th) and the earliest anyone has ever been discharged for an unrelated 8/10 mismatch was day +25.  Now he goes to daycare 3x/week and his blood values just keep going up.  His WBC's are now 5.2, normal being 4-11, and neutrophils are 3.3, normal being 2.0-8.0.  I believe... it's miracle boy.  So now we watch him improve and maintain the curve, heading towards day 100 in August for his confirmation of engraftment with no rejection.  I am amazed at how well he does.  Still does not sleep well due to prednisone. Thankfully that is being weaned off.  So greetings and good cheer from sunny Vancouver.  Hugs to all   Sharon and Marc

Check out www.MarcShapiro.ca   jj

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May 24, 2007 - Update 12

Well!!!  This has been one crazy week.  Marc had no counts on Monday and then Tuesday no change but continues incredible fevers and full body rash.  He was incoherent at times, told me his skin hurt all over, hot and cold, just felt odd.  They started large dose of IV prednisone at noon that day and by the evening he looked great. Or that may have been started Monday... the days have sort of blurred together for me.  What I know for sure is that Tues they expected his blood values to maybe rise due to his symptoms and they did not.  Weds AM they rose a significant amount and this AM they rose again to significant levels that his doctors say is indicative of engraftment.  He has not sleep for 3 nights since being on the steroids and is going stir crazy from no sleep.  SO... they let him go home on a pass to sleep and we are to return in the AM, for blood work etc.  Marc is set that he will be the earliest successful graft to go home for good.  I'm sure they took into account that he has a very anxious and watchful nurse mother looking out for him.  They tell us this could be the honeymoon period, whatever that is.  We are of the persuasion that the honeymoon is here to stay, as it always should.  Now I can type updates from home... never had any time the last few weeks as was at the hospital AM til exhaustion at 9PM.  Continue to believe and pray for the graft to love it's new bone home and not have second thoughts about whether or not it wants to stay and do it's job. 

Love and hugs...Sharon and miracle boy Marc

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May 21, 2007 - Update 11

Here’s proof your prayers are effective but needed now as much as ever.

Marc’s transplanted stem cells have engrafted and gone to work several days earlier than the 2-week average.  However, we know this because of the onset of acute graft-versus-host disease – unpleasant to read about much less experience and very threatening.  They are treating him with prednisone, and we are praying he responds to it for there is no other treatment. 

You know what to do.

jj

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May 13, 2007 - Update 10

Greetings all,  Marc got his stem cells infused on May 11th at 5:10 pm.  It took about an hour, and looked much like a large bag of platelets being infused.  He had no reaction at the time, and we were delighted to find out that the donor had the same blood type A neg, as Marc had.  This means his blood type will not change,  and I figure it can't but help in the long run if his body gets a blood type that is the same as it was before.  His extreme nausea and vomiting has eased somewhat, he now only throws up 4-5 times a day and is able to keep some of the blandest food possible down.  Cheerios are the new staple around here.  That and cold popsicles.  His blood values are dropping and being monitored daily for the need for transfusions.  He now gets methotrexate for 4doses to help prevent rejection and had the first dose yesturday, next dose monday, 3rd dose thursday and final dose following monday or tuesday.  It is bad at causing the mucus membranes of the mouth and GI tract to slough.  Marc says he can feel his mouth starting to get sore.  sigh....ARGH!!!!  It's really hard to see this boy getting sicker, I just keep telling him it's for a good cause and that he will walk away well and cancer free even if he is weak and tired and feels like he's getting his butt kicked right now.  They say to expect GVH to kick in the 23-25th when his stem cells engraft. That will mean fever and rash and GI stuff.  That however is further out and our motto now is one day at a time.  How well I know that mantra.  So That's it, keep visualizing a strong healthy vibrant Marc... his eyes may have lost their sparkle but his spirit is strong.  I tell him strong men cry when they feel bad so go ahead.  He tells me not to use the word BARF.  We are thankful for all the love and prayers,  it's a very strange and special place we are in, and all of you are with us.  HUGS, Sharon and Marc, Basil is back at home with Jeffrey for the next week or so as we expect it to be sort of intense around here.

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May 9, 2007 - Update 9

For those who focus, Day Zero will be Friday. jj

Photos from the Hospital

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May 6, 2007 - Update 8

Greetings from Marc's, 

Marc had his 2nd dose of Cyclophosphamide this am and is tired but in good spirits.  He threw up this am once and has taken his anti-puke meds like a good patient should since then.  We told him nausea won't kill him as any women suffering from pregnancy nausea can affirm.  Buck up boy, it's for a good cause!, ie; killing off any vestige of cancer left. He was allowed out of his room today.  He had 48 hrs lockdown on admit in case of germs and once cleared could share the common areas with the other immunocompromised folk.  He has a new dancing partner that goes everywhere with him... 3double IV monitors on one horking big pole.  Today he spent the day resting with Alex, while I futzed with proper food for a growing boy.  Hospital fare really sucks.  I figure my job will be foot massage, food alternatives, laundry, morale etc... They call today Day -5 and tomorrow will be -4.  Marc's Dr Dharma C. (unpronouncable) is great, he tells Marc to eat, get up and walk, keep moving and doing, and expect only the best of yourself.  He's wonderful with the kind of attitude that we appreciate.  Marcs nurses have seen transplants evolve from 10yrs ago till now and say it's amazing what can be done.  I really enjoyed the RN Emmy today who said you never know you could still be able to have children someday.  She has seen miracle babies happen.  Well one miracle at a time, so Marc first.   Again, thanks for the prayers, we'll do this one day at a time.   Later... HUGS   Sharon, Marc, Jeff and Basil. Alex too.  She's his heart and hand holder.

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May 4, 2007 - Update 7

Greetings,

Marc got admitted May 3rd and then released on pass for the night.  Laura (good friend and acupuncturist) gave him a relaxation treatment that night and reports he has GREAT CHI !!!  Course he does.  He went back in with most of his gear this 10AM (May 4th) and is hooked up to low dose heparin.  We've made a couple trips back and forth (us helpful ones) bringing in his 20# weights, he didn't like the 5# ones the hospital had, his mini stair stepper, his radio, food, coffee, hand crunchers to keep his forearm muscles in shape, and yadda yadda yadda.  They were rolling in the stationery bike, VCR hookup, and he was interviewing the dietitian for a high protein low carb diet when last I stopped in.  Now he is just adjusting to the room and getting ready for the high dose chemo that starts May 5 at 10AM.  His room is starting to look cozy and homey with pictures and personal stuff.  He is on the 15th floor with a great view out over Vancouver to the northeast....  People pay big bucks for this view.  He is in great spirits and ready to go.  So,  Keep up all the prayers and affirmations. This has really been an amazing journey of faith and love, which could not have progressed this far without the support received from all of you. We are continually reminded of the gift of love made manifest in our lives.  Later, Hugs,  Sharon

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April 27, 2007 - Update 6

Good news!  Another donor was found and a fresh transplant schedule has been set.

Marc looks to be in good shape for the transplant.  He is not only within range of pertinent values for the procedure, but in remission by all measures.  Significantly, and unlike before, there is now no sign of lymphoma in his marrow.  At the last consultation, the only reservation was that his heart's electricity looked "a little slow" which the doc felt may
merely be due to his heart's large size from so much exercise before his disease (84 pushups/minute, doh).  So she ordered an ECG, the results of which recently came in and were described as fine.

Such good shape indeed that during the last consult the transplant team felt obliged to offer Marc choices he did not have before.  One option was simply to cease chemotherapy, but the odds of surviving long afterward are
statistically poor.  Or, Marc could opt for an autologous transplant; i.e., run Marc's own blood through the harvest machine, freeze his stem cells, then kill off his immune system with high-dose chemo, and then thaw and reinfuse his own cells.  This option was more tempting.  Marc's body could easily tolerate his own cells, and with the lymphoma held so well at bay the risk that it would be reintroduced with his stem cells is small.  However, lymphoma can lie in wait outside the marrow, and were the disease to recur a second transplant would not be an option.  The original plan - an allogenic transplant (from an unrelated donor) - also cannot be repeated if the disease were to recur, and it involves a greater number of up front risks, but the risks are treatable and the long term survival odds are better, especially when the procedure is done while the disease is in remission. Marc decided to stick with the original plan.

We learned today that the donor too is in good shape, having cleared the final pre-donation tests.  The donor is apparently female or a small male, the transplant coordinator surmised, explaining that the doctors at the donor's location reported that it may take two days to harvest the donor's stem cells because of her or his size.  Genetically, this donor is not a perfect but a very good match for Marc, like the last one.  I won't try to explain haplotypes and the significance of matching different loci, it's beyond me, but the transplant doctor is satisfied, referring to the degree of mismatch as "minor".

This Sunday (April 29) I'll drop Sharon off at Marc's, where she will bivouac for the next six months or so and where I will make weekend conjugal visits.  To limit the wait at the border, both of us have obtained NEXUS passes.

On Monday, Marc has some blood work and pre-radiation measurements in the morning.  In the afternoon he gets a small amount of chemotherapy through a lumbar puncture.

On Tuesday (May 1) he has a Hickman line<http://en.wikipedia.org/wiki/Hickman_line>  installed, to spare his arms
from the many needle punctures that would otherwise be necessary.  He'll carry that line around for about six months.

Wednesday - just a dressing change.

On Thursday or Friday, May 3-4, Marc presents for hospital admission.  The docs will start 3 days of high dose chemotherapy followed by 3 days of near-total body irradiation.

On May 9, and possibly May 10, the donor's stem cells will be harvested.

On May 10 or 11, Marc receives the transplant.

August 18 or 19 will be Day 100 after the transplant, one of the most critical points in Marc's treatment according to his doctor.

Whatever you have been doing to date has clearly helped, so please keep it up.  Marc looks terrific.  His doctors are as optimistic as they come. Sharon and I are convinced Marc will be back to his crash rescue firefighting duties within two years.  That is, unless he decides to write a book about his experience and live off royalties.

What is more, I landed a temporary part-time job, which may be the best sort of work I could have hoped for in these circumstances.  It leaves just enough time for me to discharge obligations to existing clients.  It pays just enough to cover the expenses that Sharon's departure will leave uncovered.  It will last at least long enough for other job applications to bear fruit, which I may or may not pick:  For it could turn into a longer career, with the blessing.  Last but not least, my boss is someone I greatly admire and with whom I've previously enjoyed working very much.  Other than saying it is law-related, I won't describe the job itself, at least not now. The work is not embarrassing; describing it would simply take too long. Instead, over time, you can watch the results of my labor at freecle.com <http://freecle.com/> .

Thanks so much! jj

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March 14, 2007 - Update 5

I have another request.  Late last night we learned that Marc’s intended stem cell donor unwittingly seems to have been carrying a virus, either hepatitis or HIV.  Of course, Marc’s docs will brook no part of infected blood, so all of his transplant-prep appointments have been cancelled, the transplant being postponed while the worldwide donor search is resumed.  Accordingly, Sharon’s planned six-month relocation to Vancouver is likewise postponed.  I wish I had better news but this is good: it was not the right time for Marc, and the revelation may save the donor’s life.  The postponement also gives us more time to prepare for those six months.

This message is going to a long list of people spread across North America.  Many of you offered to pray for or visualize Marc’s health.  That still matters.  My request is that you keep it up.  The donor could use prayers too but we don’t know his or her identity.  If this is the first you’ve heard about Marc’s illness, please let me know and I’ll bring you up to date.  Thank you.  jj

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February 27, 2007 - Update 4

Great news - a compatible, youthful, healthy and willing donor has been identified.  Accordingly, the Date of Admission and prep regimen have been set.

March 16 – hospital admission.  Probably antibiotics given prophylactically this day.

March 17–19 – high dose chemotherapy to destroy all cancerous cells that chemo can reach.  The dose is to be such that the chemotherapy must come first, so Marc’s system will have time to eliminate the drugs, avoiding damage to the transplanted cells.

March 20–23 – total body irradiation to eliminate Marc’s immune system and destroy cancerous cells in tissues that chemotherapy drugs cannot reach.

March 22 – Donor’s stem cells are harvested (in England we think likely) and flown to Vancouver.

March 23 – transplant.

Next 3–4 months – Sharon takes time off work to reside with Marc as caregiver while I hold down the fort here.  Upshot:  Barring a financial miracle, I need to find a regular job.  jj

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February 20, 2007 - Update 3

Please see attachment and fwd to those who might pray.  Anyone puzzled by stem cell transplants can read at lay level here or at med school level here.  jj

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December 22, 2006 - Update 2
Mitch, please forward to board and staff. Marc, Sharon & I were simply overwhelmed by the very thoughtful moral and material support the board and staff were so generous to send.  Thank you!  Thank you!  I should mention (I thought I already had) that mail will reach me much faster if sent to my new all-purpose address, which replaces all other addresses including the now-closed PO Box that nevertheless seems still to be in the CNW records (obviously the corporate secretary’s fault, he should be taken out and shot).  The new address is 3106 Alderwood Avenue, Bellingham, WA 98225.  Thank you.Marc is doing amazingly well for someone in a holding pattern under chemotherapy, and gets stronger daily.  He has a long road to recover to his previous condition, especially considering that only two weeks before he was hospitalized he had set a North American record on the firefighter’s fitness test for the dummy-and-charged-hose dash-carry, and local records for push-ups (86/min!), sit-ups, pull-ups, and the standing broad jump.  But already he is marching down that road, determined to get his life back.  He works out at home (of course, far fewer push-ups, sit-ups, balance-board, stair-stepper, etc.), walks around his immediate Kitsilano neighborhood, and often seems almost normal, except he tires easily, is prone to chemo-related skin irritations, and looks the part now that he has shaved his scalp after his hair started going. Much will change when the Red Cross locates a compatible bone marrow donor.  Right now Marc only receives chemo treatments (CHOP) once every three weeks, plus Sharon gives him a shot of Neupogen ($180/shot) once a week which helps keep his immune system functioning.  During this holding pattern, the goal is for Marc to fight back the cancer; for if it were to worsen, then a transplant would not work.  Once a donor is identified, either Marc or the donor may well need to travel (more $$$).  Marc will then be hospitalized, for at that point the chemo will be dramatically increased in order to completely kill off his bone marrow, which is then replaced during the transplant.
If no donor were found, then a possible next-best alternative would be to harvest Marc’s own blood-forming stem cells, purge them of cancerous cells, and then transplant the remainder, with the risk that an imperfect purge is possible so this may only reintroduce the cancer. So, your prayers and positive visualization which thus far have been quite effective are still very much needed.  Mitch remembers Marc from my wedding, but for the rest of you to know what healthy Marc looks like a couple of photos of Marc and friends on a climb last summer are attached. I said before that Marc is completely covered by insurance.  Apparently, that’s not exactly so.  Neupogen for example is covered but only on a reimbursement basis.  But travel and its many related expenses apparently will not be covered, at all.  A thousand other incidentals are not covered.  We also thought Marc would be eligible for his Canadian government’s settlement with firefighters (lymphoma is an occupational hazard of firefighting), and that this would offset some of the expenses; but no, the settlement covers only those firefighters who have worked 5 years, and Marc has worked only 3-1/2 years.  Recognizing these circumstances, Marc’s friends put up this website which as you’ll see has been pretty useful.  Sharon has stayed plenty busy caring for Marc and her employer expects her to remain off work at least through February.  Our own health insurance will run out before then, and we plan perforce to do without for awhile.  I am now regularly shuttling back and forth, Bellingham M-Th, Vancouver F-Sn, with exceptions like Christmas.  The wood stove overhaul is complete, but the ‘office’ is still uncomfortable.  I need to insulate – next week.  Marc’s friends drove him out to select a Christmas tree, and brought home a beauty which Sharon decorated.  Marc’s sister and her partner, his aunt, and I will converge at his place this weekend for the holiday.  I hope you can be with the ones you love, too.  jj top

November 30, 2006 - Update 1

Mitch,

I am appointing you as my CNW contact on this subject.  Fwd as you deem appropriate.  This recovers some points in more detail and updates my last post.

I have been in Vancouver BC since 11/18.  Sharon’s 28 year old son Marc Alan Shapiro (an aviation rescue firefighter at Vancouver Int’l Airport, in top physical condition) suddenly fell ill on 11/12, thought he had flu, and phoned Sharon (a nurse) on 11/15 for advice.  At that moment she and I were walking to our truck about to drive away for hours but she went back into the house to collect a forgotten item, whereupon the phone rang.  She immediately went into nurse-mom mode, drove up to Vancouver in our truck, took Marc to the ER at Vancouver General, got him onto a gurney as he was nearly passing out, and pointed out a swelling about his right armpit lymph node, also near the site of a recent tattoo.  The ER team sent him into surgery to drain what everyone thought would an abscess from the tattoo, but the surgeon found only an inflamed lymph node which they biopsied.  Meanwhile, Marc went into full-blown acute respiratory distress (his lungs were drowning), and (thanks to Sharon) since he was already in surgery (not still waiting in the ER) they were able to immediately put him on a ventilator.  The vent helped but was not enough and Marc started to slide toward “code” condition (shutdown of systems for lack of oxygen).   Instead, into the ICU he went, where they had a very fancy oscillating vent.  This vent held Marc’s lungs open at the equivalent of full inspiration, while pushing little puffs of O2 at an uncomfortable 360 strokes a minute, so Marc had to be sedated (morphine and Midazolam 20 ml/hr each), and paralyzed (another drug, forgotten).  Marc was on those meds for a week.

Since Sharon had our only vehicle in Vancouver, a family friend in Vancouver drove down here to take me up there on 11/18.  I found Marc still in the ICU on the fancy vent, in a glass room kept under full infectious disease control.  He was punctured with multiple manifolds of IV lines, the vent and a feeding tube down his throat, and surrounded by instrument monitors and IV trees.  Watching over him were his nurse-mom, girlfriend-nutritionist, another nurse-friend, two hospital nurses, a respiratory technician, and an ICU doctor, all gloved, gowned and masked for at that point they did not know what process, infectious or otherwise, was to blame.  Then the lymph node biopsy result came back positive for T-cell lymphoma (blood cancer).  Next they had to open Marc’s chest to take two lung biopsies, which ruled out infection which otherwise would preclude chemotherapy until resolved.  They also took some bone marrow from his hip, which also came back positive for the lymphoma.   With that done, they gave Marc cyclophosphamide (first-line chemotherapy) and his lungs cleared up within about 36 hours (on Thanksgiving Day).  Now that his oxygenation had gone up to 100%, they reduced his sedation and paralysis meds, let him start to become conscious, and then shut off the vent to see if he could breath at normal atmospheric pressure.  You can imagine the scene as while still drowsy he realized there were tubes down his throat.  The nurses, who had taken the precaution of restraining him, eventually got his attention and cooperation, and after a few hours of trial breathing they removed the vent and feeding tubes.  Completely fatigued, when Marc realized he could barely lift his arms, he swore like a fireman, which was very comforting to hear.  He was discharged to a step-down unit for a couple days, then to the BC Cancer Agency across the street.  Marc’s physician there is the agency director.  I came back to Bellingham right after he was admitted there during the big storm, and have just now thawed my frozen computer (my office is in our garage and when I left its woodstove was in mid-overhaul).  Since then Marc has been discharged to home care by his mom, sister, and aunt, who are much assisted by Marc’s firefighting buddies.  Sharon came back here by train last night to arrange for long-term leave. 

There are 30 types of T-Cell lymphoma.  Marc has a rare presentation of an already rare type (1-2 cases/year worldwide, mostly in Asia, almost all in the elderly).  It involves his body’s natural killer cells and his bone marrow.  The plan, since the disease is highly aggressive and since Marc is young and quite athletic, is for very aggressive chemotherapy and a bone marrow transplant, both to be commenced Monday. 

Sharon and I will return to Vancouver on Saturday.  Marc is completely covered by the Canadian medical program, his union contract, and a very supportive employer.  Marc needs IMO for those who pray to pray and for those who don’t to visualize him in health.  Marc is understandably frightened, as are we, so naturally he also needs his mother to be with him.  Likewise, Sharon and I need to be together, at least part of the time.  We are currently getting by, but on savings.  Sharon, who normally earns more than I do, probably will be unable to work for about six months.  It is hard for me to get much work done in these circumstances.

I’ll send another update when possible.  jj

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November 22, 2006

Please see the attached letter.  We will be out of town except for brief intervals until further notice.  Sharon’s son Marc fell ill suddenly two Sundays ago, went through the emergency department then to surgery then to ICU all last Wednesday and has been on mechanical ventilation since then.  Nothing is certain yet but the working diagnosis is T-Cell Lymphoma (blood cancer).  Marc is a loving gentle man, only 28, works at YVR as an aviation rescue firefighter, and was in perfect health, an elite athlete, before this.  I will update when possible.  If you pray, pray; if not, please visualize health.  Thank you.  jj&syb

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