As most of you know, Megan was diagnosed with Acute Myelogenous Leukemia on May 22, 2000.

I am providing this chronology so that you, our family, friends, and supporters, can follow along as we continue to battle Megan's Leukemia. I hope you all can appreciate how difficult it is to fight this disease, and at the same time, try to keep everyone updated as to her status. Each of you, regardless of relation, are very important to us ..... and we feel all of your thoughts, prayers, and hopes for the future.  Without your love and support, this ordeal would be nearly impossible to deal with. Thank you to each of you.

Memorial Service and Celebration of Life Party

Megan's memorial service and celebration of life party will be held on Saturday, December 22, 2001.  

The memorial service (not a funeral) will be held at the La Center Evangelical Free Church from 10:00 AM until 11:00 AM, with a brunch following.  The memorial will feature music and passages selected by Megan, a few words, and an open mic for short personal messages.  The Celebration of Life party will begin roughly at 2:00 PM at my residence and will last until 9:00 PM or so.  We are allowing children to attend but respectfully ask that they be somewhat controlled due to space limitations.  The party will be catered and food will begin at 2:00 PM.

Each individual in attendance may attend both the memorial service and party, or just one, or neither.  If you attend the service, feel free to skip the brunch and eat at the house, or eat at both events.  I think what I am trying to say is, we hope to see you in any way that you want to attend.

12-14-2001 (Day +57)

My wife, Megan Rae Haverlack, passed away peacefully this morning on Dec. 14th, 2001, at 12:28 AM after her long, brave, struggle with Leukemia.  She was surrounded by her family and friends and everyone was rooting her on as she took her last breaths ....... and ascended the stairway to the divine kingdom.  She will sadly be missed and is survived by her husband (Jeff), 3 year old daughter (MacKenzie) and mother (Joy).

I feel it is important to note that we received this response from our prayers when we asked for a quick and peaceful passing this morning.  I wish to thank EVERY one of you that kept Megan and my family in your prayers, sent words of encouragement, or otherwise supported us through this process.  

Megan's wish was to have no funeral, but instead, have a small celebratory church service as well as a more personal celebration of life party held at our residence.  Plans are being made for both and I will update you all as information is available.

Rest in peace my love, you will be sorely missed by all those you have touched.  

12-13-2001 (Day +56)

There are no words to explain the call that I received this AM from the doctor .... she has been given 48-72 hours.  

I have opted to keep her out of ICU, off the ventilator, and on medication to keep her comfortable.

12-11-2001 (Day +54)

On the way home, I started this update in my mind about twelve different times.  And for someone that is much better with the written word than that of the spoken, it is very frustrating to not have the correct words to say.

In short, the doctor's are not optimistic about Megan's current condition.  Some things have gotten better, and some things have not changed.  While the kidney function, sodium levels, and skin GvHD have gotten a little better, the "no change" of her GI tract GvHD increases her risk on an ongoing basis.  Her body just is not reacting to the drugs that are supposed to control the the GvHD.  She is still in complete bowel stasis, and much of the fluid that they are pumping into her is coming right back out.  While tests show that she is hydrated on the low end of normal, meaning that they need to continue hydrating her, she is having fluid build-up in the lungs which is causing rapid breathing (up to 40 respirations a minute).  Each passing day increases the chance of a severe fungal or viral infection that is nearly always 100% terminal.

The apherisis (blood plasma exchange) has helped her kidney function but, once again, there is a problem with this.  As it turns out, Megan has the rarest form of blood plasma (AB) and has single handedly exhausted the AB plasma supply in Portland, so they are now having to fly in her type of plasma.  Consequently, she will be getting 1/2 the amount of plasma that she has been during the past week.  The red cross is putting out a plasma emergency message in hopes of generating plasma donations.  Donation of plasma is not the same thing as donating blood, it is a much longer procedure ..... but if you know that you have AB type plasma, you now know how you can help.

The doctors did decide to rechallenge her on FK-506 hoping that a slower introduction would be more accepted by her body, but it had the exact same effect on her mental function.  The other drugs in the family of anti-rejection drugs would most likely have the same effects, so they will be changing her to Cellcept, which is an anti-rejection drug that is easier on the body, but also with less effectiveness.

Basically, there MUST be some positive response within the next 5-7 days if Megan is going to turn this battle around.  While a holding pattern is not a bad thing for a short period of time, the human body can only accept system dysfunction of this magnitude for so long before degenerating.  Specifically speaking, we need the steroids to start affecting her GI tract GvH and it needs to start now!

Megan is an extremely strong woman, and if anyone can turn this around I truly believe it is her, but it is painfully obvious that the doctors do not believe that will happen.  At this point in time, from what I have seen from her care, there is no question that all her medical caregivers (doctors, nurses and CNAs) are treating her as if she is going to live .... which is very important to me.  

Although it is a very difficult realization for me to have, I now fully understand the dignity and quality of life argument for someone critically ill like Megan.  Seeing her in this state, especially when combined with severe confusion, I would not wish her to have to continue to survive this way.  It is my hope for either a quick turn-around or passing.  Regardless of your personal beliefe structure, you have to understand that some things are not controllable and "what will be, will be".  Please pray for a quick process, whichever happens to be her/our destiny.

As a side note, please know that I normally only update this site if there is NO change in her status.  If there is any noteworthy info, it gets updated the same day/night.  Given that we have entered a new phase of this process, I will try to update the page on a daily basis ..... even if I only write "no change".

12-8-2001 (Day +51)

I hope AT&T gets their act together.  Their internet service is up and down more than a yo-yo at this point, and it always seems that it goes down the same time I want to do an update.

Megan has gotten a bit better.  Her renal (kidney) function is better than it has been, but is still a very serious concern.  More importantly, her dementia and confusion is noticeably better.  While her ability to effectively speak is still an issue, she hears and understands what people say to her, and she is able to whisper replies ..... although often they are hard to understand.  But mentally, she is all there now ..... probably 90-95%.

The major concern last night, beyond her kidney function which is always a concern, was her retention of fluids.  Once the body reaches the limits of what it can process, which in her case is much less anyway, fluid starts to be retained and can end up in the lungs....which is never a good thing.  They are administering a drug that flushes the system to rid itself of the excess fluid.  As of last night, this medication was working pretty well.

So, basically, things are in a holding pattern for now.  The only thing that has really changed, besides what I mentioned above, is that they are starting her on the FK-506 again .... which I was told they were not going to do.  I will be speaking with a doctor today about this to better understand their reasoning.  her FK-506 levels are very normal now, so perhaps they are giving it one more shot but at a more controlled level and dosage, we will see.

As soon as I get more info, I will post it here. Take care.

12-5-2001 (Day +48)

Not much has changed today from yesterday.  If anything, Megan is a bit worse in that her kidney function has deteriorated further, and we are that much closer to renal failure.  

When I left today, she was hooked up to an apherisis machine that removes the blood from her body and replaces it with a 'clean' version.  Why? ...you might ask.  In short, there is a rare side effect that can occur with people taking FK-506; explosion of the red blood and platelet cells.  It seems that in some patients, when the FK-506 level gets to a particular level (different in each patient that it affects), the red blood and platelet cells explode instead of coexisting.  When these cells explode and die, toxins are released in the blood stream, and can reach critically toxic levels.  While the doctors are not 100% sure that this is occuring, all signs point to it.  While the FK-506 levels in her blood stream have reached normal levels, the after-effects are still lingering.  It is there hope that the apherisis process will clean up her blood and jump-start her kidney functions.

Megan started having nausea again this am so they decided to go ahead with the stomach tube to relieve the stomach of excess fluid and the air that filled her bowels.  They got a good measure of fluid and relieved the air pressure as expected, and the nausea seemed to subside ...... one point for our side.  However, her dementia is still holding on and an MRI showed some level of abnormal brain function, most likely caused, again, by the FK-506 levels.  She has been taken off of the FK-506 and prednisone (as of last week), and we are now waiting for the Zenopax to start relieving some of her GvHD.  Cyclosporin will replace the FK-506, but it is important to note that it is a sister drug (as all drugs in this family are) to Fk-506 and there is no guarantee that it won't have the same effect.  As far as the Zenopax and the Cyclosporin go, all we can do is hope .... and we MUST have results if Megan is to beat this.

Megan had her eyes open for a few minutes today while I was there, but there was absolutely no acknowledgement of my presence .... something that is very frustrating and discouraging to experience.  I now know what it must be like to have an advanced stage Alzheimers patient that doesn't recognized family and friends.  As caregivers, we want to be acknowledged by those we are providing care to, so that they know they are surrounded by the ones that love them most.  In my eyes, this is the most frustrating side effect as to her, we often appear to be strangers ..... and I pray that she doesn't feel alone in this process.

This said, I now apologize for what I am about to say, because I feel I need to interject some personal remarks about this process, this affliction, and taking things for granted in life.  This is Megan's page, dedicated to her fight against this disease, and I know she wants anything that could help someone one else to be posted here.  And with that thought, I offer this ..... what you might consider my testimonial about life in general.  Read at your own risk but please understand that this is only my view and perspective, although I feel very strongly about them:

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Tomorrow is never promised!  While this is known by most of us, we fail to acknowledge or act upon this fact unless, through event, it is thrust before us in bitter reality; and often times there lies no opportunity to take corrective action, at least not for the afflicted.  But therein lies the opportunity for the rest of us.   

By nature, I am a planner, a controller, a constructor of foundations of which I then use to build upon, towards some other goal ...... usually much further into the future.  In many cases, most in fact, this process involves sacrifice of the present for gain in the future.  As you can foresee, there is an inherent problem with this line of action.  I am not about to tell you that long range planning and goal achievement is negative in any way, quite the contrary in fact.  I truly believe that one must be willing to see past the need for immediate gratification for the return of some future reward.  However, as so often is the case, we forget so many of those cliches that we have come to know over the years:  ..stop and smell the roses, it isn't the destination but the journey, and of course now, tomorrow is never promised.

Being very cerebral, painfully so in fact, I thought I had a firm grasp on what life was about, how to have fun, and how to prepare for having even more fun later.   After all, my personal goal in life was to "have as much fun as possible, and take my family with me".  Most of all, I vowed not to take things for granted.  True to my words above, I sacrificed many a thing, a trip, a gift, a display of emotion, either out of lack of time, conscious effort, cost, or some other reasoned approach.  It is only now, when threatened with the loss of that which I hold most dear, that my bitter reality has materialized.  How wrong I have been.  Perhaps misstated, better put, how misguided an approach.  Like I said earlier, planning and the concept of future value are very important fundamentals, especially in a relationship, but the things that are truly most important are in those tired cliches that we repeat, but don't take to heart. Furthermore, those same things have such little cost, either in time or money.  What hurts most is that while I have now learned these lessons, I may not get the opportunity to share them, experience them, with the one who has been sacrificed so that I might learn them.  

I have found simple, tremendous, value in a sunrise on the drive to work.  I have discovered the simple pleasure and power in the feeling of the light mist of water hitting my face from my sprinklers as they shower my lawn.  I have learned how insignificant, in reality, we really are while laying on my lawn at midnight watching for shooting stars.  I have learned about the true effects of a hug, not out of casual routine, but out of love or caring.   I now fully understand the impact and senselessness of the statement "not right now honey" or "maybe tomorrow".

Perhaps just as important as those personal realizations are the the realizations that I now understand about the teamwork present in a well-functioning marriage.  While there will always exist a certain amount of stubborn pride, ego, and individual martyrdom in every marriage, we take for granted, or ignore altogether, those traits or functions that our mate possesses or performs.  I would offer that a good marriage finds two individuals naturally filling the needed roles out of instinct, personal skill or ability, or perhaps even societal stereotypes.  But even being one to acknowledge, at least in mind, everything that Megan did/does, it is now painfully obvious to me how blind I was to so many other facets of her role.  What is truly amazing to me is just how evident they now are, whereas before they were unseen, or more aptly put, unacknowledged.  This is not to say that Megan provided more, or less, to our 'team' but instead, to highlight the fact that even though I felt I acknowledged all of her strengths and abilities, I hadn't even scraped the surface.  And while those traits that I did acknowledge are important, no more so than those I failed to see, and fewer by far.

My only real prayer is that I get the opportunity to share these realizations with Megan once again.

I am an optimist by nature as well, and while within this process I have no optimism, I am not without a healthy supply of hope.  I have personally found optimism to be too dangerous, even for myself whom I thought could handle anything, any event, any obstacle.  This has been the most tremendous learning experience of my life, many times that of the fire that Megan and I experienced while in Utah in 1994.  When Megan and I moved to Utah in 1993, I promised her a life of happiness, devotion, and fun .......... not of fires and leukemia.  I am not sure why we have been chosen to walk this path; perhaps for some level of higher understanding or education.  We have learned much, but this lesson may cost too much and its teachings may ultimately fall upon myself alone.  I do believe that life's lessons are weighted equally with the the challenge that they require and each of us must each make the choice of whether to accept the lesson or deny it.  I choose to accept, whatever the cost.

We may not be able to control the events in our lives, but we can control how we react to them.  Inability to control them is a medical condition that needs treatment.  One does not need to be a control freak to control reaction.  This isn't to say that we don't have moments or episodes of loss of control, but utlimate control must take place over a longer period of time.  As Megan and I have reaffirmed throughout her illness, "we will not allow Leukemia to define our existence".  Given the severity of the illness and the potential negative outcome, it is difficult sometimes to believe that we have not somehow been defined by it, but like that of controlling your reaction to events, ultimately, definition occurs over a longer period of time as well.  So while leukemia may define our existence for periods of time, some shorter, some longer, ultimately it is up to each of us to ensure that we do not allow it to ultimately define us.
I could not hope to offer any insight as to how to prevent this from happening to anyone else, regardless of the event, because I feel that each individual approaches situations differently, with different strategies and tactics, that utlimately determine whether the individual defines the event, or vice-versa.  

What I do offer is that objective self-analsysis is absolutely necessary if an individual is to successfully define a potentially life changing event.  So many of us defend ourselves from the truth of a situation, what we are feeling, what we are experiencing and how we are reacting.  In that defense of those actions and feelings are the justifications for "why".  Fear or denial of the truth, for whatever reason, behind what we are feeling goes a long way to allowing an event in your life to define you as opposed to the reverse ...... at least in my opinion.  We must face the fact that we are jealous, we are scared, we are angry, or any other number of feelings that have very powerful reactions bound to them.  Without true objective acknowledgement of what our true feelings are, how are we supposed to act upon them in a way that is conducive to resolution, both for ourselves and those around us.  

This week I am extremely scared, sad, guilt ridden, angry and a host of other feelings .... and this week I am defined.  But I know in the end, whatever the outcome, I will define.

I have so much that I want to share, feel the need to share, but this is not the place for it.  Tonight I felt the need because I do, we do, feel blessed for all of the friends and supporters that are by our side, both near and far, family and friends, known and unknown.  I feel I have so little to offer others right now when we have received so much from you, that I hope in some way, any way, my testimonial here will make you at least think for a second what you take for granted, what events are defining you, and what you are truly thankful for that, for whatever reason, you haven't shared with those close to you.  As homework, I want you to act upon whatever it is you take from this testimonial and share it with someone close to you.  In that action, I will at least feel like I have made some difference in your life in return for the love and support you have given us.  If you like, I would love to hear what your realizations are. Please feel free to share them via email (link is on the left).  Perhaps I will share your thoughts on this page as your testimonial as well.  If you don't want them printed just let me know in the email, and please be honest.  If you wish, please forward this on to others so that they too might be able to benefit and share their results.

I will leave you with something that happened just twenty minutes ago with my almost three-year-old daughter, a very short conversation that made my entire week for some odd reason.  When I asked her "Do you know how much Daddy loves you?" she matter of factly answered "25".

The power of children is stronger than any other to my knowledge.  And the true beauty of this power is that they do not know that they possess it.

Carpe Diem


12-4-2001 (Day +47)

Finally back online.  AT&T has taken over @home since the bankrupty and it just took a little time to get everything moved over and back up.  I wish I had good news, but at this point in time, I do not.  There is no short answer to what is going on so I will just start at the beginning and work from there.

Megan is still in-patient at OHSU and for very good reason.  When last I updated, Megan was readmitted due to nausea.  The nausea is under control, but that is about the extent of it.  I saw her last night and she looked simply terrible, no other way to explain it ...... I walked in and was shocked how just a day or two can make a difference.  In short, the FK-506 drug that is supposed to be helping with the rejection, is taking its toll on her brain to the point where she has severe dementia again.  She is off the nausea and pain medications due to the dementia effect, in hopes that it would subside, but it does not appear to be happening.  Her FK-506 levels are very high in her blood stream and this is due most likely to inefficient liver function ....... and the high levels have the potential to cause the dementia that she is experiencing now.  Furthermore, her anti-GvH medication (Prednisone) did not work so they have switched her to Zenopax (spelling?) in hopes that it will have some positive effects on both her skin GvH as well as her gut GvH.

Because of all of the narcotics, lack of nutrition, and such, her bowels are in stasis and are not functioning.  At this point, they have taken her back off of the anti-diarrheal drug in order to get some bowel activity occuring again.  The severity of her stomach GvH (Grade 3), combined with her bowel stasis, raises her GvH grade to 4, the worst possible rating.  Grade 4 GvH essentially means that unless they can gain control, and reduce its effects, system function will begin to fail.  Grade 4 GvH ultimately causes renal failure (kidneys) which then starts a rapid, cascading, organ failure.  

The doctor has told me that they need to see some significant results, or at least improvement, in the next week or two, or things will become very critical.  The dementia is a concern in that they have no idea exactly what is causing it at this point.  She has been removed from the narcotics and anti-nausea medications, and there has been little effect.  If she does not 'clear' in the next 48 hours, they will perform a lumbar puncture (spinal tap) to search for secondary infection of the spinal fluid, which can cause this type of dementia.  Additionally, they will be switching her to a different anti-rejection drug, Cyclosporin, which is a very common drug for transplant patients.  The hope is that between the removal of all narcotics, the FK-506, and clean spinal fluid, that she will start making progress.  If the new steroid (Zenopax) starts working, which should be in the next 48 hours, her gut GvH should start to improve, and her bowel function will hopefully return to normal.  So as you can see, the next 48 hours are really critical.

Her dementia has now taken a somewhat aggressive and violent turn as she lashed out at one of the nurses today and is very aggressive in her activity, often trying to pull out her tubes and IVs.  For that reason, they will be putting her in a Posey Jacket, which is a special type of jacket that severely restricts movement ...... similar to a straight jacket, but not as extreme.

I listen very carefully to the doctors to gain an idea of what exactly is going on, and more than any other time, I am very concerned with what I heard today, and their general body language and tone.  I have researched many transplants, both with successful and unsuccessful outcomes, and Megan's progress closely follows that of an unsuccessful transplant.  While it may appear that way now, it is very very possible that Megan will turn the corner and the new drug regimen will start having positive effects.  There is simply no other way to deal with this situation other than day-by-day.  

I wish I had better news to share ..... perhaps tomorrow.

11-27-2001 (Day +40)

Hope everyone had a great Thanksgiving!  Megan was home for Thanksgiving and even shared a very small dinner with us, but it proved to be a little much for her stomach ..... just a little too much after so many liquids and easily digestable meals, she was down most of the night with very bad cramping and nausea.  Not surprisingly, the next night we took her back to the hospital with nausea that we couldn't control; furthermore, because of the nausea medication combined with dehydration, she had multiple episodes of passing out when she would get out of bed ...... to the point where we had someone in the room with her at all times.  After speaking with the doctor, he wanted her admitted immediately so that they could get her rehydrated, the nausea treated, and so that they could start getting her medication into her through the catheter instead via pill form ....... which normally didn't stay down very long.

As of this morning, the nausea still hasn't gotten much better and now she has terrible diarrhea on top of it.  The doctor says it will probably be another few days until the steroids start getting the GvHD in her gut under control.  So at this point, we do not really expect her home until the weekend ..... and that is ONLY if they are able to control some of these symptoms.  

From a caregiver's standpoint, and somehow this sounds wrong, but it is almost a relief to have her in the hospital where she is able to relief and fluids that she can't get at home.  It is very difficult to watch her go through so much pain, frustration, and nausea and all we can do is watch and try to comfort her.  We would all much rather have her home with us, but at the moment she is in the right place, getting the best care ....... and finally getting some rest.   That said, we can't wait to have her feeling better and back home with us.

She isn't taking any calls for obvious reasons, even we have only been calling the front desk to check on her status when we do call.  Hopefully, that too will change very soon.

Take care and I will try to update again tomorrow, or when her status changes.

11-22-2001 (Day +35)

Firstly, happy Thanksgiving to all!!!

Today was made even more special because Megan was discharged from the hospital today, and allowed to come home ...... not to the "safe" house, but actually home.  It was a little surprising to even me, but the doctors said that we were close enough at this point that if there was a problem we could get to the hospital fast enough; it is great to see her home again.  The scope of her stomach and biopsy of the skin did show that she has mild GvHD (Graft vs. Host Disease), which is completely expected at this point.  Her stomach was a bit inflamed but nothing serious, and her rash is very expected as almost every BMT patient gets this rash.  Her nausea is under control for the most part she is feeling relatively good.  As is expected, she still is extremely tired as her immune system is still very very immature.

Infections and illness are still a big risk at this point so we all are being very careful about handwashing, bacteria control, and other environmental controls.  Her pancreatic enzymes, which were high at a count of 129, are back down to 23 ..... which is also very good news.  

So again, we are back to day-by-day, but everything is going great so far ...... hopefully more of the same is in our future.  Megan will still be making clinic visists 3-4 times a week but any amount of driving is worth having her home.  For those wanting to contact her, you can reach her at the house number as usual .... no more musical houses or hospital rooms.

11-19-2001 (Day +32)

Just a quick update as I have been running like mad the last 24 hours.

Megan has been readmitted to the hospital as of 3:00 AM this morning.  We have been unable to control her nausea and even she wanted to be admitted so that more of an effort could be made to get it under control.  After speaking with the doctors, they agreed to go ahead and admit her, but we had to go through the emergency dept. to get it done, which turned out to be a 5 hour process.  For the most part, Megan's lab work all looks very good and even the emergency dept. physician said that her numbers look "very good despite what she has gone through", we will take every positive comment thank you very much.  The only number that was a bit out of whack last night, was her pancreatic enzyme count .... which was a bit elevated.  This elevated count means that she has a slight case of pancreatitus, which can be brought on by constant nausea and vomiting, both which Megan has had (in abundance).  The pancreatitus is something that they will need to watch very closely to make sure it is controlled as if it were to get worse, the increased enzymes will make it into the blood stream in unhealthy amounts and have the potential to cause serious complications.

As another precaution, they will be "scoping" her stomach in the next couple of days to make sure that the nausea isn't early signs of GvH.  

So again, Megan is back in the hospital and she can be reached by calling the BMT nurses station at (503) 494-7150; they have just moved her into her permanent room and I do not have that number as of yet.  Sorry for the short update, but I am out the door again ..... will update again soon.

11-16-2001 (Day +29)

Just a quick a note here.  Megan is doing pretty well, but still fighting nausea on a daily basis.  The nausea is very expected at this stage, but they are usually able to exactly what is causing it with each patient, and they haven't come to any conclusions as of yet with Megan.  Yesterday, they found that she had an elevated level of her anti-rejection drug (FK-506) so they reduced it with the hope that the nausea would subside ..... but it didn't really have much of an effect.  Today she was at the clinic and they still have no idea where the nausea is coming from, but they feel they will as she progresses.  Ultimately, if they cannot treat the nausea, she will have to be readmitted to the hospital.  As it is now, when she gets to the clinic, she gets nausea medication and fluids that she can't seem to get while at the "safe" house.  So far, all her labs and numbers look very good.

Megan's mom is now in town and will become her primary caregiver for the next few weeks; this allows my sister Nancy to take MacKenzie duty, and me to put in a few more hours at work ....... since the tree that I bought to grow money doesn't seem to be working; I think it came with a guarantee but can't find the paperwork..  :o)

Other than that, not much is happening .... which can be considered a good thing.  When I saw her last, she looked very good and had more energy.  If we could control the nausea, I think she would be feeling great ....... relatively of course.  Will update again as more info becomes available.

11-14-2001 (Day +27)

Wow, has it been that long?!?!? I would have sworn it was only two or three days since my last update.

Where to start?  Ok, Megan went outpatient on Monday at about 2:00 PM.  We left the hospital and immediately went to what we are calling "the safe house".  We have a friend that lives just across the river on the Vancouver, WA side that has an extra room, and since she is within 30 minutes of the hospital (as required), she opened up her home to us for the next phase of this treatment, which should be about 4-6 weeks.  Megan was VERY anxious about this as it means that the nurses weren't going to be just around the corner anymore, very understandable.  But as has become standard for this procedure, "nothing another medication couldn't solve".  Ativan (Lorezepam) is one of the medications that treats nausea and anxiety very well, and it works very well on Megan.

Mentally, she is doing pretty well, especially now that all the confusion causing meds are out of her system.  Certainly a bitter-sweet issue since the meds also allowed her to be somewhat oblivious of what was going on, and such like that.  But I know she, as well as all of us, much prefer her non-dopey.  As her husband, I had the hardest time with her confusion, it affected me in a way that I did not foresee.  I could handle all the tubes, her labored breathing and everything else with the procedure, but the dimentia was very difficult for me .... and I am sure, everyone else.  It is good to have her "back" in that respect.

As mentioned above, we moved to the safe house on Monday.  We have a medication organizer that helps us keep track of what to take when, but she immediately started having nausea and found it difficult to keep anything down .... including her medications.  After a rough first night, she ended up not being able to keep her AM medications down and after a call to the transplant staff, they wanted us to come down to the clinic.  Know that even though she is outpatient, it is still expected that she will be at the clinic 3-5 times a week for 3-5 hours each. During these visits, they take labs, rehydrate her, do an exam, etc. etc.  Once we got to the clinic, they gave her some medication for nausea, took the labs, and got her meds into her via the catheter.  During the visit, too, Megan found that she had two bumps on her arms that are a little painful, so to be on the safe side, they had us go to Dermatology to have them looked at .... and eventually biopsied.  Could be nothing, could be a little infection, or could even be GvH in an early form.  Regardless, they want to make sure exactly what it is just to be on the safe side.  Of course, that tacked on another 2 hours onto the visit, extending it to a 7 hour visit.  
Her numbers (from her labs) look very good and we most definitely have a very strong marrow engraftment, and she does have a functioning, albeit immature, immune system.  For that reason, we still have to be extremely careful with her diet, environment, visitors, etc.   Please feel free to call or email me for the number of where she is if you want to get in touch with her. Much like when she was in the hospital, it is almost minute by minute on how she feels ......... so you may need to try multiple times until you get to speak with her, but I am sure you are already familiar with the routine.

Just as a note, I apologize for any spelling errors in these updates.  Because of time constraints, I pretty much sit down and write what I am thinking without proof reading, whether it be 10:00 AM (currently) or 2:00 AM.  So depending on my current state of mind, cognizance, or sleep (lack thereof) these updates could be quite entertaining.  I do correct what I find, but since I am not proofreading ....... well, you get the picture

Everyone else here is doing pretty well, especially MacKenzie.  She is a ball of energy, enthusiasm, and positive attitude ...... very healthy for all of us.  We had a fun day at Chuck E. Cheese a couple days ago, and it is by far her favority place to go.  For any of you fathers, or mothers for that matter, should your son/daughter want you to come into the "tubes" with them, I strongly suggest diversionary tactics, excuses, or any other method you see fit to stay out of them.  I am 6'2" and it is obvious, painfully so, that the tubes weren't designed for 6'2" guy with bad knees, stiff back, and greying hair.  Thankfully though, they have paramedics on call, 24x7, should a parent go in, and not come out.  Yet, despite this, every time we go .... I find myself in those blasted tubes.  Maybe if I get her a pony instead..............

Well, thanks to all of you as usual.  Please feel free to drop me an email, or call, should you want any further information.  Another update coming soon.

11-9-2001 (Day +22)

Sorry about the lack of updates the past few days, kept meaning to do them, but time kept slipping away ..... especially since Megan has made great progress in the past two days.

It is safe to say that we have our Megan back!  On Wednesday, her white blood cell count increased from .7 to 3.4, and then on Thursday went to 10.1, which is great news.  Technically, she is no longer neutropenic, meaning that she has a functioning immunce system, but it is still a very immature immune system so we are being very cautious and taking things very slowly.  Best of all, her mouth sores are getting better day by day, and it won't be long until they are completely gone; this also means that the pain medication has been greatly reduced, and she no longer is confused.  I spent time with her yesterday, and it is great to actually be able to have a conversation with her and see her smile again.  She has even been strong enough to take walks up and down the hall, which is very important.  She is about 90% back from the drug induced confusion, and she still has momentary lapses now and again, but they don't last long.

At this rate, it is foreseeable that she will be discharged perhaps by mid next week, barring no setbacks.  Day 21 marked the first day that we really start watching for early GvHD, but other than a rash, nothing has developed ..... still very early yet though.

She hasn't been up for talking on the phone much as she is rebuilding energy and saving her voice, but she is very up to having visitors, so don't be afraid to drop in as long as you are healthy.  Thanks again for all your words of support, emails, phone calls, etc.

11-5-2001 (Day +18)

Good news today!!

Megan's white blood cell count is up to .5, a very good sign as it most likely means that the donor marrow has engrafted and is producing cells.  Moreover, now that her immune system is starting to come back, it won't be very long (just a couple of days) until the mouth sores clear up and they can start backing down the pain medicine ..... loosely translated, that means that the Megan that we all know and love will be more mentally "with it".  As most of you that have tried, or have, contacted her over the past week, it was impossible to hold a conversation with her because of all the medication.  The past few days, to see her, you would swear that she is on death's door because of how she looks ... this is a very ugly procedure to say the least.  But with any luck, her numbers will continue to rise and within a few days, she will be much more herself.

Amazingly enough, the doctor said that she could even be release/discharged at the end of the week, something that is truly unbelievable if you have seen her.  But they say that the advance of the immune system is so rapid and that the side effects will decrease as quickly, that she could be released.  I spoke to the nurse and she still thinks that Megan won't be released until mid next week at the earliest, we will have to wait and see.  In any case, the fact that they are even talking about that is a very good sign.

The donor marrow engrafting is just the second hurdle in a 4 hurdle race.  The first hurdle, and arguably the most dangerous, is surviving the initial transplant by not picking up any life threatening infections while she is neutropenic.  The second hurdle is for the donor marrow to actually engraft and start producing cells ...... and it looks like we have that.  After clearing the second hurdle, we enter into the next leg, which is the Graft vs. Host Disease (GVHD) fight.  Please see the update from 11/2 (Day +15) for a description of this.  Then, the last hurdle to be cleared is the life long hurdle of not relapsing.  If you look at Megan's chances as a pure % play, most doctors suggest that there is a 40%-50% chance of the transplant doing it job, meaning that she doesn't relapse.  Remember that there is no cure for Leukemia, only long term disease free survival.  However, after two years of remission, the chance of relapsing drops significantly, and after five years, it is very rare to relapse.  

We have been staying with her on some nights as the nurses have asked that she have someone by her side when she is the most "confused", she still is unplugging her IV lines on occasion.

I just want to reiterate that everything is going EXACTLY as planned at this time, it couldn't be much better.  I know those that have seen her, or have spoken with/to her, get very concerned because she just doesn't look good, but it is part of the process and you know as they say ..... "it is always darkest before the dawn".  Everyone here is doing great, especially MacKenzie.  For anyone going through a difficult period such as we are now, know that children are truly resilient and that they have the tremendous gift of unknowingly being able to add strength when it is most needed.  

On a sad note, a very good friend of mine whom I asked for your prayers for earlier, lost her husband to Leukemia today at 2:27 PM; Travis was 27 years old and had been battling his leukemia for over four years.  My deepest sympathies and condolences to Lacy and her daughter Hannah for their loss; they now have the very difficult task of trying to rebuild their lives and to move forward with a significant piece missing.  Strength and peace to you, and your family.

11-2-2001 (Day +15)

Still not much to update at this point, hence ..... no updates the past couple of days.

Megan has switched rooms again and is now in room 5C11; this is because they wanted her closer to the nurses station for the night shift.  With Megan's current state of confusion from the drugs to control pain, she has been getting out of bed more often, and doing things like clamping off her IV line, turning off the IV infusion device, and she is also in risk of taking a bad fall because of weakness.  So, she loses her "Cadillac" room but is closer to help should she need it.  

Many have called me recently very concerned about her condition, chiefly because of her tone and babbling.  This is all very normal and is due to her pain medication.  She is completely neutropenic, meaning that she has no immune system whatsoever, and is taking a lot of medication for both pain and infection control .... because of these medications, she is suffering from short term memory loss and confusion, sometimes quite severe.  The mouth pain is also affecting her ability to speak, making it sound much worse.  Additionally, she has a lot of upper respiratory congestion which is also normal.  All these things put together make her sound very very bad, and look about the same.  It is very tough to watch, but I take comfort in knowing that things are going as planned, and she is under very good care.

Today is the day that we start watching for signs that the donor marrow has engrafted; we will know by watching her blood counts, specifically the white blood (WBC) counts.  Yesterday she was at .1 and today she is at .2, nothing to be excited about yet.  We want to see a consistent, day by day, increase in this number to signify that the new marrow (from a 35 year old man) has taken hold.  It is a bitter sweet issue because we HAVE to have engraftment, but with it also comes the start of the Graft vs. Host Disease fight.  After the marrow engrafts, it starts producing its own cells (hence the increase in her blood numbers) which are, of course, not the exact same type as her body.  Once these cells are created and they hit the blood stream, they will immediately begin to attack surrounding tissue, organs, etc.  She is on anti-rejection drugs now and the novel approach to this regimen of treatment was to reduce the T-Cells that lead in the attack .... with any luck, the GvH will be very controllabe.  Again, GvH is a must because not only does it attack her good cells and tissue, but also any residual leukemia. The hope is that, after the transplant, ALL leukemia cells are destroyed, the implanted marrow and the cells it creates, are accepted by her body, and the leukemia never returns.  Contrary to popular belief, successful transplant does not mean that she will eventually turn into this 35 year-old man.....or so they promise me. :o)

Today is also the first day that we start watching for early GvH disease, but until her numbers start moving up, chances are pretty slim that she would see any early signs.

Please don't hesitate to call or write with any comments or questions that you may have.  The email address is the last item on the menu bar to the left.  

10-30-2001 (Day +12)

Well, things continue to move right along ..... without a lot of change.

Megan is still fighting terrible mouth/throat sores, extreme fatigue, and drug induced confusion and bouts of babbling; all very normal from everything that I have heard and read.  One of the people that is following this chronology has a husband that is a few weeks out of transplant from OHSU and had the same room that Megan has ..... and she says that there "are good vibes in that room" and she feels that it definitely played a role in his quick recovery from the transplant; she even calls it the Cadillac room ..... sure it is not the Cadillac that I want, but we will take it in any form I suppose.  

Try not to be too discouraged and frustrated with Megan's current condition, and I myself have say that over and over again in my head very often.  It is painful and sad to sit there for hours only to watch her restlessly sleep and only wake long enough to utter some nonsensical phrase at the hand of those drugs.  But, on the positive side of the coin, those drugs are doing exactly what they are supposed to, controlling the pain that she would be feeling because of the mouth sores and other related issues.  With any luck, it will only be anothe week or so before we get her 'back'.  The memory loss is a big issue because she will/does not remember visits and phone calls.  I was with her for four and half hours and the next day she said "where have you been".  Even more frustrating is that we have a little cold running through the household, and it just seems to be lurking in a couple of us and not fully coming out.  So we have to err on the side of caution which has kept MacKenzie and I away for the past two days while we wait to see if it develops.  The balancing act between wanting to see Megan but not wanting to take in an illness has been more difficult than expected, especially when it seems that everyone you know is fighting off the most recent virus that has been going around.

Halloween is here and has always been one of our favorite events since MacKenzie's birth; this year she finally 'gets it' and can't wait ..... but somehow it doesn't seem complete without Megan home to enjoy it too.  But lots of pictures and video should help to capture the day.  Halloween also happens to be my birthday, yet another year.  

Everyone hang in there and don't be afraid to call or write with your questions about Megan, the transplant procedure, what's coming up next, which tech stocks to buy and which to avoid, and etc.  With any luck, we will be illness free tomorrow AM and can get back to the routine.

10-27-2001 (Day +9)

Was with Megan for a few hours today and things still appear to be on track.  Most often I end up spending time sitting on the bed next to her, or in the reclining chair, watching her sleep; she still manages to wake now and again, look over, and flash a quick smile before slipping back into her restless sleep.  The fact that she still has the strength, and will, to smile is inspiring.  She is extremely fatigued, has very bad mouth sores, is very shaky, and has bouts of confusion/babbling still ..... all very normal strange as it may seem.  She slept most of the time, but after taking a shower to freshen up, she was feeling a little better and we had a chance to talk a little, but the mouth sores make it very difficult.  She hasn't been answering the phone much because she just isn't able to hold a conversation for very long.

I have been getting quite a few calls from those concerned about her condition, mainly because of confusion and drug induced 'babbling' state that she is in at this time.  That, coupled with the fact that she isn't picking up the phone much, I think is concerning many of you.  She is doing fine and everything is very normal at the moment, but we are still a week or two out from the beginning of the most critical and serious period of this transplant.  Her x-rays are still not showing any blockage and it appears as though her digestive system is slowly getting back to normal; as such, they will be easing her back onto solid food again.

Megan is amazed at the number of cards that she has been getting, as am I.  I take every one of them down to her and there are a few that arrive each day.  Thank you all, yet again, for keeping her in your thoughts and prayers.

MacKenzie is doing great .... and it really makes you believe in the resiliency and adaptability of children.  She knows exactly where 'Mama' is and, while she doesn't understand the seriousness of the situation, she understands more than I think I give her credit for ........ good or bad?  I'm not sure.  The time away from work for me has allowed me to be with Megan as much as possible, but also allows me to focus extra attention of keeping MacKenzie busy and having fun ..... no doubt spoiling her in the process. :o)  Either way, I think maintaining a routine and consistency of attention and socialization is very important.

Today, more than any recent day, it is extremely tough to be a control freak within a process where little control exists.  On days like this, it is best to go to bed early, sleep it off, and rise again tomorrow refreshed and refocused.

10-25-2001 (Day +7)

Today was the first day that it was really evident that the treatment is starting to take its toll.  Megan was very fatigued and it was difficult for her to talk because of the throat and mouth sores that are developing (the most common early side effect).  Megan is having a bit of intestinal difficulty in that her body is not processing food quite as it should be.  They took x-rays today to make sure that there wasn't a blockage and they came back as inconclusive.  What often happens is that the narcotics that are given relax the body and its functions to the point where the even the digestive process doesn't work as intended.  By changing the diet to clear liquids and easily processed foods, eventually processing returns to normal.  

The drugs that Megan is given tend to have the typical narcotic effects.  As such, she is prone to memory loss, or more accurately lapses in memory, slurred speech, and babbling.  Should you be talking with her and she begins to not make any sense, know that it is because of the medication that she is receiving for pain control.  It can be frustrating at times when trying to speak with her because she feels like she is making sense, but she normally quickly realizes that she isn't.  These spells normally don't last too long and sleep is the best remedy.

Other than the mouth sores and a continual battle with diarrhea (also very common), she is feeling about as well as can be expected.  Please don't be too concerned if Megan isn't very talkative when you speak with her, the mouth sores are making it tough to talk.  Will update again tomorrow.

10-23-2001 (Day +5)

No news to report.  Megan is feeling pretty well today, and she loves her new bed that she is now in.  Doctor's say that there is nothing out of the ordinary.   

Please see yesterday post below for her new room number and phone number.

10-22-2001 (Day +4)

Firstly, Megan has changed rooms.  We were walking the halls for exercise when we found the room at the end of the hall empty and the first thing that struck us was the great view, and the leather recliner .... not to mention that the room is about 1/3 larger as well.  Just as a joke, when the nurse asked if Megan needed anything, Megan said "yeah, the room at the end of the hall" ..... and the nurse smiled and said "sure".  So, long story short ... she is now in room #5C33.  Her new phone number is (503) 418-0543.  Because so many people have asked, I am going to include the address of the hospital here:

   OHSU
   3181 SW Sam Jackson Park Rd.
   Portland, OR 97201

Just add "Attn:  Room 5C33, Megan Haverlack" under the address line and it should get there just fine.

Megan was feeling decent today, but it is obvious that things are progressing.  She is getting much more fatigued, starting to develop some mild nausea, and the indigestion has gotten worse and may be the early signs of mouth sores that are the most common early side effect of a transplant of this type.  That said, she is still doing very well and there is nothing out of the ordinary yet to report ... which is just how we want it.  For anti-rejection drugs, she receives Methotrexate (4 doses only), and FK506/Tacrolimus, which is a graft vs. host disease medication that she will take for 6 mos.

Not much else to report at this time.  If you call Megan, please don't hang up too quickly if she doesn't answer, sometimes it will take a few rings for her to get the phone.  Look for another update soon and thank you for all of your cards and letters.

10-21-2001 (Day +3)

Well, you know what they say, no news is good news.  

Not much to report still.  She did need a blood transfusion yesterday, but that is to be expected and she will probably continue to have red blood and platelet transfusions every couple of days until the new marrow, hopefully, engrafts and starts producing significant cells on its own.  Recall that the job of the chemo therapy and the radiation is to kill off her immune system and marrow, so that the donor marrow can set up shop and start producing.   Aside from a little fatigue and the "jitters", and now a little indigestion, not much is present.  A lady next door to her that started transplant at the same time, and of the same type, has not been so lucky and seemingly has been quite sick .... even this early into the process.  This next week is an important one because early rejection and transplant difficulties can start showing up at any time now.  

Just to clear up any confusion, Megan CAN receive visitors.  Most people affiliate marrow transplants with complete patient isolation, plastic bubbles, ventilation tents, etc.  While that was true a few years ago, recent studies by the medical community have shown that the positive psychological aspects of socialization far outweigh the risks of possible infectious illnesses and bacteria.  When once patients were secluded in their rooms and not allowed to leave the 'bubble', now they are free to leave the room, exercise, roam the halls, have visitors, compete in triathlons, skydive, and even lawn bowling; okay, perhaps a bit of an exaggeration, but you get the idea.  For Megan, and most that know her would agree, this is an absolute must.  As a precaution however, if anyone in your household is symptomatic (showing signs of an illness), please do not visit as it does increase the risks for Megan as well as other patients in the transplant wing.  Additionally, if you, or anyone that visits, has had the chicken pox or polio immunization in the past two months, do NOT visit.   These immunizations are actually live disease cells that can live on the body for an extended period of time and someone with an extremely low immune system can catch the disease.  

But the doctors and nurses will tell you that while her risk for illness increases when exposed, the greatest risk of serious illness results from bacteria and fungal spores that live on/in the body.  Common colds, flu, and the like don't pose serious threats in most cases.

That is all for tonight, I will update again tomorrow.

10-19-2001 (Day +1)

Not much of a change today, everything still going well.  Today is the first day that Megan seems to be going a bit stir crazy.  After all, she is feeling well enough to move around, but can't really get comfortable and the the drugs are making it difficult for her to concentrate on anything, including watching TV, reading a book, crafts, or anything else.  Seemingly, the only thing she can concentrate on is not being able to concentrate .... which gets a bit frustrating for her.  She isn't allowed to go outside the transplant wing, and while she can roam the halls, it is only about as long as an airplane and there isn't anyplace to go.

For those trying to call, she has had her phone off much of the day as she has been trying to get more rest since she is so fidgety.  

For those willing to add another name to the prayer list, please add Travis Godby to your list.  I met Lacy, Travis' wife, through a Leukemia newsgroup and learned of her husbands leukemia.  He has been fighting this dreaded disease for going on 4 years now, and he recently relapsed and there is little else that can be done, he is 28 and she is 26 with a 4 year old daughter, Hannah.   He recently developed viral pneumonia and was given 2-6 weeks to live, but has improved somewhat.  With their immediate future so uncertain, and Lacy not having a significant support system, they need all the strength and prayer that they can get.  Lacy and I have become good friends because of this illness and she is a very strong and courageous person, quite inspirational.  I will post pictures of her family soon.

Being is a somewhat reflective mood tonight, I am going to start on my caregivers page for those in a support role for someone seriously ill.  I myself have learned much about not taking things for granted and how to truly live on a daily basis, on your own terms.  While you cannot control the events in your life, you can control how you react to them, and whether you allow them to define your life, or whether YOU define your life through them.   We learned much from the house fire 7 years ago, and even more this time around ........ In what many would consider a 'twisted' statement, I feel we have been given the opportunity to learn from these experiences where many aren't given that opportunity.  That isn't to say that this isn't a very difficult period of time, but I simply refuse to not see the positive aspects of this event, and to change accordingly; there is something positive to be taken from EVERY event, whether we choose to or not is an individual decision made by each of us.

10-18-2001 (Day 0)

The big day has arrived!

I spent the night with Megan last night in preparation for our big day.  We got word at about 6:00 AM that the donor marrow had arrived at the hospital earlier than expected.  At about 7:30, they took Megan for her last radiation treatment.  Except for a severe bout of nerves and anxiety, after getting the news that the marrow had arrived, everything has gone according to plan.  

Shortly after 9:00 AM, the donor cells were hung on the rack and the infusion began.  It is a two-hour process and the nurse is bedside taking vitals and temperature at five and ten minute intervals.  Due to Megan's anxiety, she was hypertensive (high blood pressure) through most of the infusion, but it settled down to normal eventually.  The premedicated drugs made her a bit "dopey" as usual and she slept through most of the infusion.  

It is almost surreal how easy it went, considering how serious of a procedure it is, especially when seeing how healthy she is today (relatively) and knowing how severely ill she will be in a couple weeks.  It was so much like a normal transfusion that I half expected to pack up her things with the thought we would both be coming back home tonight.  The nursing staff and support people are all great, and the cafeteria that they have down there is great .... and reasonably priced as well.

There isn't a lot to report just yet.  The next week will see her getting weaker and weaker as her own marrow dies off and her immune system bottoms out.  From that point, the infused donor marrow should find there way 'home' and hopefully engraft.  From that point, if all goes well, the rejection battle will begin and mild GvH (Graft vs. Host) disease will set in.  With any luck, this will be minimal and she will be able to overcome this.  Again though, this is the danger to this procedure, and the most dangerous period is between day 21 and day 100.  Keep checking the site for updates as I will perform them as often as possible, aiming for every night; it is the least I can do for all of you that have given us so much support.  Please don't hesitate to email or call to ask questions.

For those of you keeping her in your prayers, please include a prayer for our donor as well .... asking for a quick recovery and a special gift for the special gift that he gave Megan.  We are not allowed to know his identity for a year.

10-15-2001 (Day -3)

Not much new to report.  Megan had her first Total Body Irradiation (TBI) session today and it went well.  They pretreat for all of the side effects so she feels fine.  She had her girl's night "Bunko" group tonight and they packed a bunch of people into her room, and it sounds like they had a lot of fun.   She sounds great, things are going well, the people there are great, and the countdown continues.

Again, thank you to all of you that have sent email and words of support over the last couple of days.

10-14-2001 (Day -4)

Getting down to the wire now, only 4 days until transplant; everything is still on track.

For the most part, everything is looking good.  This was her last day of Fludarabine, the chemotherapy medication that she gets as a pretreatment for this type of transplant.  She also get Cyclophosphamide and ATG.  ATG is the drug that will be used to deplete her T-Cells to help minimize the amount of GvH (Graft vs. Host) disease that will be present after the transplant.
For those of you knew to this site, please read below for more detail on these type of items.  In short, however, since this is a 5 of 5 antigen transplant, the risks of Graft vs. Host disease (GvH) are much much higher, and potentially more damaging.  Since she will be getting foreign bone marrow, her body will attempt to fight this matter, and as well, the donor marrow which contains its own T-Cells will begin to fight against Megan's system too.  GvH can take hold in any number of areas and range form being insignificant to life threatening.  The transplant that Megan is receiving tries to minimize the amount of GvH present.  Note that a certain amount of GvH is a good thing in that it also has what is called GvL or Graft vs. Leukemia effect.  GvL takes place as part of the GvH in that not only is the donor marrow fighting Megan's system and organs, but it is also fighting the resident Leukemia ..... a good thing.  So, in short, you don't want to deplete the T-Cell so much so that there is not GvH, but nor do you want run-away GvH either.  It is a delicate balance for sure.

Tomorrow starts the first day of Total Body Irradiation (TBI).  This takes place for four days, and occurs twice a day for 20 minute periods.  While there can be side effects and reactions to the TBI, normally it is relatively minimal and nothing to be concerned about.  However, this is technically a lethal radiation dosage in a controlled environment, and you can only undergo this procedure once in a lifetime.  By getting it, you increase your chance of secondary cancers at the rate of 1%, cumulative, per year.  So if Megan lives another 30 years, she would have a 30% chance of developing a secondary cancer.  At this point, we'll take it.

I am working only two days a week now, Wednesdays and Fridays, and will continue to do that for as long as possible.  Beyond that, I try to fit in a couple of hours from home whenever possible.   I want to be sure that I can be here for MacKenzie, and to be at the hospital as often as possible.  My employer has been fantastic through this whole process and their loyalty and flexibility offered me leave me speechless.  

Megan is in great spirits and feeling very well, although the drugs have made her a bit jittery.  We watched Monday Night Football together and then she drifted off to sleep.  I want to express my deep thanks and gratitude, yet again, to all of you that have shared your love, support, friendship, prayers and well wishes to Megan, MacKenzie, and myself.  The people that we have surrounding us are truly a blessing and you all make this serious situation much more bearable.

Updates will come daily with any luck as we enter this critical period.  Many of you have expressed "fear" of calling for updates but know that I look forward to speaking with all of you and am willing to give updates on Megan whenever someone wants/needs to know.  In short, please do not be afraid to call, even if it is every day.

10-6-2001

So far, so good.  The donor has agreed to donate and we don't much about him other than he is most likely on the east coast, is in his mid 30s and is willing to subject himself to through the pain of a marrow harvest in the hopes that it will cure someone he doesn't even know.  The marrow center in charge of performing the harvest is dragging their feet just a bit but best guess is that the transplant will happen on 10/18 or 10/24.  Seems like the days are flying by now, and even though I have gone part time, there isn't much quality time left and it is tough to get too excited about the procedure.  Once we get the official transplant date, Megan will go in-patient at OHSU six to seven days prior .... and the 'fun' begins shortly after that.

Starting on day -6 (six days before the transplant), I will begin with nearly daily updates and as much detail as possible, especially in seeing that this is a new type of transplant .... or more correctly, a novel approach drug regimen before transplant to reduce rejection of the donor marrow.

Not much else to say at this point.  Megan is feeling very well, lot of energy and is baking like a banshee.  Her courage, optimism, straight-forwardness and strength are inspiring, as is the support and encouragement that we have received from family, friends, and those that we don't know but have taken the time to write.  Thank you all.

10-4-2001

Found out that Megan has been randomized to the non-depletion arm of the transplant study ..... which is fine with us. The doctor is actually happier about that because he feels that the drugs used to prevent the GvH and promote the acceptance of the donor marrow is better in the arm of the study that we got .... as opposed to the pure T-Cell depletion ... which also reduces GvH and GvL (Graft vs. Leukemia). The nice thing about the arm that we got is that it is a new approach that infuses 50% more donor marrow than is standard ..... furthering the chance that the donor marrow engrafts. This does raise the "ugliness" factor a bit on the front end as GvH could be worse, but also increases the chance for a long term "cure" if she can make it past the GvH. For what it is worth (FWIW), the transplant coordinator thinks she is going to be fine through the process. She says that over the years, she "can just tell with certain people" that they will be fine .... based on the health of the patient, the type of donor, will to survive, personality, etc. ....... We will certainly cling to that hope.

9-15-2001

At a time when so much is going on in America (World Trade Center attack), it is tough to write an update for a single person, even if it is for my wife.  That said, let me begin by saying I could write volumes on just what I am feeling alone ...... sadness, hatred, disgust, helplessness, and the list goes on and on.  While I personally believe that we cannot allow a single event in our lives define us as individuals, how can we not become that which we experience over time.  For some of us, that time is all too short ..... and each of us must ultimately choose how much we allow one particular event in our life to shape who we are as an individual.  This particular event has affected me more than I would have believed possible, and I think most of us as Americans are experiencing similar feelings.  Simple words seem inappropriate when so much more is needed but they are offered:  

We offer our deepest sympathies, prayers, and thoughts during this time of our nation's incredible loss.  Know that these lives go not without now greater purpose and effect, for those lost during this tragedy have done more for this country than many times their number of living could have done.  These individuals are truly heroes in my mind because they unknowingly have given this great land of ours something that we sorely need ...... unity.  You are saluted and will not be forgotten.

A lot has transpired since my past update .... and I vow to stop vowing to update more frequently, I am even getting tired of the excuses. :o)

This last round of chemo has really taken it out of Megan .... and the cumulative effects of this treatment are quite obvious.  In the beginning, I know it is common to think that "why can't we just keep giving chemotherapy every 6 mos. or so?".  By my count, this being her 7th round, the answer to the previous question is obvious ..... because the body can't take that kind of abuse at the hands of this poison on a consistent basis.  She is recovering more slowly, her veins have thinned and have all but disappeared (to the dismay of the nurses that have to take blood), her energy is waning, she has frequent bouts of nausea, and perhaps the most prominent affects are those psychologically based, she is simply tired.  

From the last round, she again 'danced' with the hemorrhoid that is roughly the size of New Jersey.  However, it was determined that it became an absess and had to be dealt with.  With a minor outpatient surgery, the doctor was able to go in, clean things out, biopsy the tissue just to be on the safe side, and close it up to heal ...... everything went well, and she is feeling great.  We got the results of the biopsy back and it was only inflamed tissue, which is what we were hoping for.  Recent blood results have come back looking very good after being a bit stubbon, a fact that was blamed on the absess.  So now we are clear to start the next serious procedure .... the transplant.

We have been gearing up for an Autologous (her own marrow) transplant at Oregon Health Sciences University (OHSU), but they really have been searching hard for a better unrelated match, even if it is only 5 of 6 (not a perfect match).  Given the uniqueness of her tissue type, we knew that this was almost a certain impossibility.  However, they have identified a potential donor that is a 5 of 6 match, that also mismatches in one of the upper antigens (as expected) which is not considered serious.  So although he is technically less than a 5 of 6 antigen match, because of where the upper range mismatch is, they feel he is a strong enough candidate to be a donor for Megan.  But now we have a decision to make.  The Autologous transplant has about 1/2 the likliehood of giving Megan a long term disease free survival outcome than that of the Allogeneic (unrelated), but it also has only a 5% mortality rate in the first year, from the procedure alone (given that she doesn't relapse first).  The unrelated transplant has a 30% mortality rate in the first year but offers a better chance of long term survival. Chances are that we only get one shot at the transplant, as you can only undergo total body irradiation once in your life, and can't be transplanted again within the first year.  OHSU is strongly suggesting the unrelated transplant while our regular oncologist is suggesting the Autologous ......... nice that they agree, would have been too easy.  We will know more next week as we have an appointment with our transplant physician, at which time we will assault him with questions.  Technically speaking, OHSU would be performing a new type of transplant, that is based from the T-Cell depletion method of transplantation; what the differences are in their method is one of our questions.  We do know that they have only performed this method one other time, and the patient is doing very well ...... so you could say, to date they have a 100% success rate. :o)

For those of your struggling with the terminology, T-Cell depletion basically is a procedure that reduces the number of T-Cells present during the transplant.  The T-Cells are those that will immediately attack foreign matter in the body.  After transfusing the donor marrow, the T-Cells will immediately begin trying to attack Megan's body, organs, and tissue in attempt at ridding the body of these 'foreign' items.  By depleting the T-Cells in the donor marrow, fewer T-Cells are present, thus reducing the amount of GvH or Graft vs. Host disease.  The problem is that, along with GvH comes GvL, or Graft vs. Leukemia, a desired event.  GvL is the process along the same lines of GvH where the leukemic cells are also attacked and engraftment is increased.  By reducing GvH, thereby also reducing GvL, many experts feel that this is less effective than standard transplants.  It seems, however, that most centers are beginning to migrate to this method because of the reduced complications of GvH.  There are current studies underway that are varying the levels of the depletion to find the right ratio to minimize GvH but maximize GvL ..... and my guess is that we will be one of those studies.

Megan is 'gung-ho' for this procedure and I wish I shared her enthusiasm.  I lean toward this direction as well but feel there is still a lot to be researched before we can make an informed choice .... but time is not on our side.  We will need to choose quickly.  The donor is a 'perfect' specimen in that he is male (beneficial) and in his 30s (beneficial) and seems to be very aggressive in getting to the doctor to carry out the needed appointments and procedures towards donating (very beneficial).  All signs point to the fact that we will most likely be selecting this more aggressive method, but I want it to be an informed choice.

Megan is starting to feel well again, getting her energy back, and it is a shame that we will have such a short period of time to get some quality time in ..... but we will use what we have. Remember that "tomorrow isn't promised", and that you must live in every day that you are given.  Thank you all for your continued support, love, well wishes, letters, phone calls, flowers, etc. ....... they are very much appreciated and are inspiring.

7-12-2001

I really need to do a better job of keeping this site updated, been so busy of late that it is tough to update as often as I would like.

Well, here is the latest.  Not really all that much has changed.  Megan went through another round of chemo, after the hell round mentioned in the last update, and this one went great .... and she is back into remission.  We have met with OHSU and authorized them to do a search for a 5/6 (5 of 6) mismatched donor as they do have some mismatched protocols that Hutchinson does not have.  We have two choices, alternatives, for transplant.  The most likely scenario is that Megan will receive her own marrow in what is called an Autologous transplant.  Her marrow is harvested, she is given total body irradiation, and then her marrow is reinfused with the hope that no Leukemia cells exist and that her body starts creating the "good stuff".  The other option, which is most likely not an option since Megan has a rare tissue type, is a mismatched unrelated donor.  Two potential donors were located and have been called for further testing.  The chances of these two individuals being transplantable is very slim, so we are preparing for the autologous transplant.  While statistics are difficult to quote because of age differences and such, ballpark figures suggest about a 20% cure rate and a 5% mortality rate during the procedure.  The mismatched transplant has roughly a 20%-40% cure rate with a mortality rate of approx. 30% during the procedure.

The one issue that may be of concern is that due to a lot of chemotherapy, they may not be able to harvest enough cells to do the autologous transplant.  Should this be the case, that leaves us with very few options but hoping the last round of chemo therapy did the trick, which is in the neighborhood of 2%-4%.   Additionally, because you can only go through total body irradiation once in a life time, if Megan relapses shortly after her autologous transplant, there is not further transplant procedure that can be immediately done, and chemo is about the only option ...... and not a good option if we want a cure.

Because of all the chemotherapy, we must be careful going forward which drugs we choose for upcoming chemo rounds do the the cardio-toxic nature of the drugs.  Too much of these drugs can weaken the heart and cause congestive heart failure, so when trying different chemo 'cocktails', caution must be used in balancing past treatment, and future treatment.  An echocardiogram will be given shortly to measure her heart rhythm to see how much, if at all, her heart has weakened to this point.  My gut feeling is that we are fine in this area.  

Another round of chemo will be coming up to ensure that remission is continued while we further prepare for the autologous transplant attempt, currently looking to be in mid to late August at this point.  Megan is feeling good, we have done some landscaping in the back yard, and are buying some things for the house ..... with money that we should be saving for my time away from work, but what the heck.  :o)

My employer continues to be extremely flexible and I have been working two days from home and telecommuting 8-12 hours from home when possible, supplementing the rest of the time with sick leave and vacation.  I have just exhausted all of my sick leave, leaving only vacation left ..... enough to last for two months with my current agreement at work.  My employer's flexibility is incredible and I can't thank them enough, truly makes me want to stay there forever in repayment.  It is nice not having that additional stress on top of what we already have.

Megan was rebaptized and wrote a testimonial that had everyone in church in tears, and she has read it numerous other times at the pastors request.  Perhaps I will import it here sometime soon for you all to see, she is very inspiring and strong.  Thank you all for your continued support, contributions in money, time and emotional ways, we feel every well wish, hope and prayer.

More to come soon, "I promise" (as MacKenzie says).

4-12-2001

Well, it pains me to have to give this update, Megan's leukemia has relapsed. We got the news on 3/22, just a few days after our anniversary .... and my bout with the flu (that I got that same night). This was a shock to us as it was revealed through her normal monthly check-up, she was having no symptoms of any kind.

For the past two weeks, she has been in the hospital at the Kaiser facility in Portland undergoing another round of induction chemotherapy.  Kaiser does things differently than our last provider, meaning that she needs to be an inpatient during the round of chemotherapy that she is receiving. This time, they are using a different chemo druc by the name of Daunarubicin which is the heavy weight version of her first induction therapy drug, Idarubicin.  Unfortunately, this round has hit her very hard and she is also currently fighting off two simultaneous bacterial infections, one an aerobic (requiring oxygen) bacteria, and the other anaerobic (oxygen-free).  The only good that can be said about this is that at least it is not a fungal infection, as at this stage, that would be a life threatening infection.   She has been exhausted to the point of not even being able to lift a spoon or talk, but now seems to be making some progress. She has been spiking 103+ fevers, but they are controlling the fever and we just have to wait it out at this point.

She has a great support group around her and we thank all of you for your prayers, support, and love.  I will be updating more often now that things have changed.

1-12-2001

Well, the rollercoaster continues.  I apologize, yet again, for the delay in updating the site with the news.  In mid-December, we were notified that our donor was removed from the donor list permanently.  At the time, we summarized that she had gotten cold feet, and being around the holidays, had decided not to go through the donation procedure, but we found out just last week that she had been pulled for medical reasons .... which only happens 5% of the time as noted in me earlier post from 11/30/00.  This news came as a blow to both of us, but by X-mas I was over it, and Megan got past it shortly thereafter.  

It is not the news that we wanted, but it is hard not to be excited that we have her home and with us.  There is nothing left to try at this point, so our attention has turned to making sure we do everything possible to keep her in remission.  We have been eating organically (where possible), are exercising more regularly, and doing mental imagery.  We have come to the conclusion that these things must be lifestyle changes and not just temporary attempts at being healthy.  We still stray all too often, which is to be expected, but we are getting better on a daily basis.

Due to the insurance change, we are now seeing a new doctor but, as it turns out, she is the one that taught our old doctor everything he knew about Leukemia, so we are very comfortable with her.  I am still doing research on nearly daily basis looking at new clinical trials and research about this disease, and if anyone has information to share, please pass it on.

We are still optimistic, in good spirits, and are living for the day.  We are going to Disney World in April and are very much looking forward to it.  Continued thanks for all the well-wishes, cards, letters, and emails ..... as always, very much appreciated.

11-30-2000

WE HAVE A DONOR!!!  Sorry for the caps, but we are very excited.  We got the call today from Fred Hutchinson in Seattle stating that the young lady that was our 6 of 6 match is a very good match, and very transplantable.  Things are going to start moving very fast now.  Megan begins testing in the third week of December which will take approximately two weeks.  Preliminarily, her in-patient will begin on January 7th and will last 4-5 weeks.  After that, there will be approximately 2 1/2 months of out-patient treatment that will require her, and a care-giver, to reside in Seattle.  

Initially, our planning has me at home with MacKenzie from the beginning of her in-patient status, until she comes home, probably not earlier than May 1st.  My employer is being extremely flexible through this process which is one very large stress factor removed, I can't thank them enough ... truly a phenomenal environment.   

There is still a small percentage chance that this donor will be medically unable to be a donor, but that is only 5% likely.  We will all breathe a little easier after we know that our donor has been given the "green light" to donate, and she schedules the appointment.

But regardless of the remaining hurdles, this is a very happy day in the Haverlack household.

11-22-2000

A long time since my last update, but because of the unfolding events, I didn't want to leave you hanging with only 1/2 the story.  The early news was that all of the 5 of 6 matches have been ruled out because of Megan having a unique antigen.  A brief explanation:  There are a total of 10 antigens that are tested for, the most important of those being the first 6, hence the 5 of 6, or 6 of 6, match.  Preliminary matching is done on these first 6 antigens.  To be a transplant candidate, there can only be one mismatch in the 10 tested antigens.  So, if preliminary tests yield 5 of 6 matches, with only one mismatched antigen, further testing of the next 4 antigens takes place, but those 4 remaining antigens MUST match, otherwise that would mean that there would be at least two mismatches.  Megan's unique antigen is in the upper 4 antigens, meaning that all of the identified 5 of 6 matches would also mismatch in the upper 4 as well, ruling out transplant.  That means that our hopes rest on the single 6 of 6 match; this was certainly a blow to us as we are sure that one of the upper 4 antigens will mismatch, which means that the other 3 MUST match.

After speaking with Fred Hutchinson (Hutch), I was told that it was a lot to ask for to have these other 3 antigens match, so we were preparing for the worst while hoping for the best.  We received a call earlier this week from Hutch saying that preliminarily, the 6 of 6 match does appear to be a good match and did match Megan in the other 3 antigens.  We are, of course very excited, but there is also some secondary testing on the alleles that must be done to ensure transplant quality.  The alleles are secondary and it is our understanding that the transplant could be done even with many mismatches, but the more that match, the better.

So, we are preparing for the transplant.  Additionally, we are discussing fertility options with a doctor as Megan would be infertile after the transplant, but the timing would have to be just right; we do not want to delay the transplant and risk a relapse.  It is a pricey procedure, but one that we are seriously considering.

Thank you all for your continued support and prayers, they are making a difference and it appears that mountains are being moved because of them.  We are very optimistic and excited to get to transplant so we can put this process and the disease behind us.  The transplant does not guarantee success, but it is the best option.

Keep your fingers crossed for the allele matching, and I will update you further when we know for sure.

10-30-2000

A lot has transpired over the past couple of weeks, and all good news.  Most importantly, my company has chosen Kaiser for our new insurance carrier.  This is good news because Kaiser uses the same transplant facility (Fred Hutchinson) that our previous insurer used, which means no physical transfer or messy paperwork once the tranplant is in place. Furthermore, we recently found that, under our current insurer, there was a maximim transplant coverage of $150,000, meaning that we would have to come up with $100,000+ out of pocket.  This change does not take place until 1/1/2001, so there may still be some red tape if the transplant begins before this date, but all in all, this is good news for us.  The only bad news is that we will not be able to keep our current Oncologist, whom we feel very very close to, I doubt anyone could be as good as him.

The pieces of good news have to do with early indication testing of Megan's 5 of 6 matches, and the 6 of 6 match.  Early advanced matching is showing that the two 5 of 6 matches are still very good matches at this point, but more testing is still needed.  On even a better note, the 6 of 6 match that was not returning their phone calls finally reported back and has gone in for testing, keep your fingers crossed for this one.

A lot of stress has been removed over the past few weeks due to these issues, and while we are yet to even get to the difficult part, transplant, these are very big steps with major consequences.  It is good to have them behind us now.

Thank you all, again, for your continued help, strength, and positive words .... as always, they are very much appreciated.

10-10-2000

I apologize for the length of time this update has taken, has been a very busy month for all of us.

Megan is doing very well and is currently in limbo, between her last chemo and the upcoming transplant (at some point).  She is feeling very well with renewed energy as the toxins are now gone from her body and she is, for all intents and purposes, completely healthy.  But that said, we know that this awful disease can, and most likely will, relapse at some point during the next year or so; that is why the transplant is needed as soon as possible.

The transplant facility, Fred Hutchinson (Seattle), is still in the early stages of putting together the transplant, including their current phase of bringing in those individuals that most closely matched Megan's marrow type.  She had two preliminary "perfect" matches, but one of those individuals has been pulled due to medical reason, which leaves just one.  That is not a terrible thing as there were also 110 near matches that can be tested.  Fred Hutchinson expands the near match search so that the near matches are very near matches .... increasing the odds that a suitable donor could be found, but still we wait.

The insurance "issue" is further taking shape and it is almost certain now that we will no longer be able to keep our current insurer beyond 12-31-00, unless I get fired/terminated from my job, we get a divorce, or we get legally separated, the latter being an interesting option.  COBRA will only continue coverage on an individual(s) under those three circumstances.  The good news is that one of the final two insurance candidates does use the same transplant facility, Fred Hutchinson, and there is no waiting list.  Although we would not be able to use the same oncologist, whom we have come to love, he has assured us that there is a very good oncologist that he will be referring us to.  Once the transplant gets underway, we will need to maintain two seperate residences for at least a four month period of time, our current house, and a Seattle apartment near the facility.

Being that things have returned to "normal", it is sometimes easy to forget that this is still a real part of our lives, still seems almost like a dream.  Thank you all for the continued well wishes and prayers, we feel every one of them.

9-3-2000

A minor setback this past week:  Megan's catheter came back "very" positive for bacterial growth.  This explains the recent infections that she has gotten during her last two chemo treatments.  It was known a few weeks back that she did have something growing in her catheter and they treated it with in-line antibiotics in hopes of killing the bug, but trace amounts were obviously left, which then grew and spread as her immune system dropped .... at least it was found.  The downside of that is that they had to pull her main-line catheter (chest) and relocate it.  Since this is the second relocation, and they can't use the same site more than once in any short amount of time, they had to relocate it to the inside of her right upper arm ... not very comfortable, but not too bad.  It is not as convenient and she needs help now with each application as she only has one arm to do things with, as opposed to having both hands free when it was in her chest.

Her next, and last, chemo treatment starts on Tuesday, 9/5, and we are very much looking forward to her getting through this last round.  It is also a nervous time for us as we are flying without a net so to speak, when she finishes.  The next stage of treatment is to get her to transplant, which means that we must keep her in remission until that time; with no more chemo available to help with that, and the reduced odds of regaining remission status if she relapses, makes us a bit anxious to get on with the transplant.  We still have not heard the final results from the detailed donor search, and we hope to by the end of September.  

Everyone is feeling good, and we are all in good spirits.  Thanks to all of you for the well wishes, the cards and letters, the prayers, and positive thoughts.

8-20-2000

Megan came home today after a rough few days in the hospital. Not a lot could have been done differently to keep her out of the hospital this time. Megan had a feeling that this was going to be the tough one, and in the end, she turned out to be right.  We took extra precautions this time, being sure to wash our hands thoroughly more often, careful with what we ate, and even significantly reduced visitors, all in an attempt to make sure that she stayed out of the hospital ..... just wasn't in the cards.  The doctor thinks that it was a bacteria, most likely, resident in her "main" line .... the tubing used to give/draw blood.  Bacteria is resident on all of our bodies in quantities that are usually not significant enough to cause problems, given that we have a normal immune system.  Following chemo therapy, it is the immune system that is significantly affected, to the point that even this normal bacteria can cause problems enough to necessitate a hospital stay where antibiotics and can be given.  By this Friday, her immune system should be back to normal and she should have a week and a half of energy and good health.

 It is good to have her home.

8-16-2000

Megan finished her third round of chemo at the end of last week, and on Tuesday her white blood cells, red blood, and platelets all bottomed out. As can be expected during this period, Megan starting running a fever late Tuesday night.  When she went to bed it was just over 100.  By midnight, it was just over 102.  A call to the on-call oncologist was made and he elected to treat her with only Tylenol as antibiotics had already been adminitered earlier that day.  In the morning, her fever had not changed much, and during her routine morning appointment, when she was to receive blood and platelets, because of the fever, they could not.  Her fever did not drop in response to the medication given and she started to feel nautious, so the decision was made by our doctor to admit her until the fever could be controlled ..... a standard procedure.  This has happend once before during the second round of chemo, and she is not allowed to come back home until the fever can be kept under 100 for a period of 24-hours.  Our doctor warned us that during one of these treatments, we could expect Megan to get a serious infection or "bug" that would keep her in the hospital for up to a week, he said it always seems to happen at least once.  We are still hoping to avoid that and my feeling is that she will be home tomorrow as this one is not half as bad as her last occurrence.  For those interested, the doctor explained that most of these infections or illnesses stem from bacteria is on all of our bodies and only poses a risk when our immune system is low.

MacKenzie and I, as well as all family involved, are holding up, and doing, very well.  MacKenzie has an amazing intellect and is learning at an amazing pace; it simply amazes me that you can show her one item in a book (i.e. A starfish), and she will remember that item a week later when you ask her to "find me a starfish" .... she loves her books.  Everyone should know that Megan is in very positive spirits as well and is a very strong person.  She draws a lot of strength from family, friends, and all of the well wishes ... a different kind of strength than I can give.  I am thankful for all of you that choose to play a part in her battle, and I know Megan is as well.

Look for another update soon as I update her current condition.

8-9-2000

**Notice:  Many people have been asking if they should/can be tested as a potential donor for Megan. Currently, preliminary matching has been completed by Fred Hutchinson in Seattle, and those initial matches are being further tested for compatibility to Megan.  We should receive the final results of this testing in early September, give or take two weeks.  If one of the preliminary matches is found to be a suitable match, the transplant will be done short thereafter, and no donor drive will be necessary.  If, however, the matching doesn't yield good results, we will then begin preparations for a donor drive and you will be contacted and, if you are willing to get tested, given instructions on the specifics for getting tested.

Keep checking this page for the latest results and thank you for all of your offers.

8-5-2000

Today was an incredible tribute to the human spirit, and people helping people.  We have only been in this neighborhood for 9 mos., and the entire neighborhood, and even part of the city (which only has about 2500 residents), had the first in a series of benefit drives to raise money for our cause.  Under the name of "Life for Megan", the local neighbors here put together a donation garage sale complete with a snow cone machine, donated pizza certificates from Papa John's Pizza, and sodas.  The garage sale was like few I have seen, and the locals here, are beyond words.  When it was all said and done, they raised a total of $3,500 after expenses for our cause.  I am truly honored by the gesture and am still in awe.  A silent auction is next in line in a couple of weeks.

It is safe to say that I have been quite inspired today and can't wait until I have the opportunity to return, in kind, the actions that took place today.  Even today, while witnessing it in action, I have determined a number of ways that I can help the cause of others in similar circumstances; starting tomorrow, I will begin to put that plan into action.  While my focus will still need to be focused on Megan for now, I know that we will get our chance.

To those of you from the neighborhood that helped out today, and to those of you that I do not know that were involved in ANY way, I truly, truly, thank you.  You have touched us in a way that is nearly unexplainable.  Thank you just is not enough.

8-4-2000

Megan finished her 3rd round of chemo, one more to go.  She has been more tired coming out of this one that in the past, just can't seem to get any energy.  Certainly not helping is the fact that one of the medications that she is taking is making her very jittery at night, making it very difficult to sleep.  Combine that with not being able to get a lot of sleep during the day, and you quickly run out of energy.  The danger here is that if she picks up a bug and is already exhausted; we are being extra cautious this time with trying to make everything as clean and germ free as possible.

7-28-2000

We got our match statistics today.  The center reported that we located (3) 6 of 6 matches, and roughly (150) 5 of 6 matches.  The 6/6 and the 5/6 is what indicates the initial matches. These numbers refer to the HLA (Human Leukocyte Antigen) necessary for a good candidate for a transplant recipient.  6 of 6 matches are the most desirable but transplants are being done with good results on matches of 5 of 6.  4 of 6 matches are not being done currently.  While we would have liked to have seen 10-20 6 of 6 matches, three is decent.  Further testing must be done on these matches to find whether or not they are, indeed, good matches ....... on to the second round of tests.  Keep your fingers crossed.  The odds of finding a matched donor is roughly 1:1,000,000.  For this reason, we are hoping that the identified matches pan out ...... otherwise, we need to run a marrow drive.

7-18-2000

The long awaited trip to the world famous Fred Hutchinson Center, the best known marrow transplant facility in the world; living so close to Seattle is paying dividends.  As expected, the transplant coordinator indicated that a transplant is suggested and that we should go ahead with a marrow search to determine if there exists a match for Megan.  We formally signed the paper work for the test to be done, and now we must wait for at least a week for the preliminary results.  Even after the prelim results, we must wait up to another 6-8 weeks    for the second round of testing to be completed if a match is found.  We are extremely nervous as one would expect.

On a side note, I cannot imagine NOT having insurance and having to go through something like this.  Before any preliminary work could be done, we had to sign the authorization for insurance to pay or we would have had to give "The Hutch" (Fred Hutchinson Center) a check for $225,000.  They must turn away patients that cannot come up with the funding for the process, whether through cash, check, or insurance ...... I simply cannot imagine not having any means to pay for a life saving procedure.

5-22-2000 (Recap)

This is the day that turned our lives upside down. After noticing significant spontaneous bruising over a short period of time, Megan went to the doctor to get things checked out.  Over the previous month, she had noticed some strange flu-like symptoms when traveling (motion sickness), excessive bleeding of the gums, her hair seemed to be thinning, and I noticed that she seemed a little pale.  It did not take long for the doctor to do the necessary tests and, after summoning both of us, giving us the news; I remember it like it was yesterday:  "You are very sick, we think you have Leukemia".  From that point, time has been a blur.

We are very fortunate to have a doctor (Oncologist) that we both think the world of, Dr. Marcus Braun, from the NW Cancer Specialists; I cannot say enough about this doctor's compassion, empathy, delivery, and most certainly, knowledge. There is no way that a diagnosis like this can be easy, but having NO concerns about your doctor, or the facility, is an incredible confidence booster.

When we thought things could not get a lot worse, we got another blow.  Exactly one day after saying that we have a lot to be thankful for, especially our insurance, we have recently found out that my employer's insurer is pulling out of the region and we will be forced to change group coverage when a new insurer is selected. While insurers cannot deny coverage for a previous existing condition, they can have waiting periods, sometimes excessively long, for such treatments as a bone marrow transplant (BMT).  Moreover, the prospective insurers for my employer do not cover the facility or our doctor on any of the plans, which means that we will have to switch when the time comes ...... few alternatives exist unless we are willing to pay, out of pocket, to keep our existing doctor and facility.

I am extremely thankful for my employer, who is using our case s the measuring stick when comapring prospective group insurers; I have only been with them for a year, but their loyalty to me and my family ensures that I will repay them with a length term of service and dedication.

For those interested, let me recap her diagnosis:

She is diagonosed with Acute Myelogenous Leukemia (AML), subtype: Myelomonocytic (Subtype 4). This subtype is extremely important with AML as it classifies the abnormality of the cells relative to their maturation. AML most often occurs in elderly individuals, the median age being somewhere near 61 from my research.  While the odd of getting AML beyond 55 is 1:10,000, the odds of being diagnosed at age 30 is 1:100,000.  AML is NOT inherited and cannot be passed on, a very comforting and important fact.   Subtype 4 is considered middle-of-the road for AML; 7 subtypes have been identified.  The genetics of Megan's Leukemia was found to have (3) chromosomal abnormalities, a fact which generally means that    a marrow transplant is probably the best option towards a cure.

The treatment consists of initial rounds of chemotherapy, in our case four rounds.   The first rounds, Induction, is the hardest on the body and has the most side effects.  In Megan's case,    the side effects were not nearly as bad as they could have been, and were quite better than expected.  Following the Induction round of chemo-therapy, 3 rounds of High-dose ARA-C is    given.  The pattern is 1 week of chemotherapy, administered by a fanny-pack pump (which can be administered at home), followed by one week of close observation while the red cells, white cells, and platelets begin to drop.  During this second week, a neutropenic status will eventually be obtained, meaning that the immune system is extremely low, and the body is very susceptible to infection ..... something that must be monitored very closely.  Twice already, we have found ourselves at the hospital late at night, due to a high fever.  After roughly one week, levels are nearly returned to normal and she then has approximately one and a half weeks of energy and relatively normal existence; then the next round begins.

Leukemia is generally treated by one of three methods:  1) Chemotherapy 2) Allogeneic Transplant 3) Autologous Transplant.  Chemotherapy is always indicated in the early stages, but does not always, ultimately, cure the Leukemia.  An Allogeneic transplant is the reception of marrow from another body. An Autologous transplant is the extraction, and treatment, of one's own marrow, which is then transplanted back into the Leukemia patient.  Due to the genetics of Megan's AML, Allogeneic transplant has the greatest chance of success. Given that Megan is female, of relatively young age, and with a young child, her chances of a successful transplant, once a matching donor is located, is higher than the median success rate    of 42%.  Even without the transplant, some very promising clinical trials are available; most notably is the stage II trial of I131 which is showing, currently, a 70% remission rate.