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Saturday, July 24 - Quick Notes

When we setup Mo's Memorial Fund, we discovered a better alternative than we had originally planned.  The account has been setup at the Madison Community Foundation, which allows contributions to be tax deductible.  The new address is:

Maurice Rosefelt Memorial Fund
c/o Madison Community Foundation
P.O. Box 5010
Madison, WI  53705-0010

We have been discussing a variety ideas for how to donate the money in Mo's fund in a meaningful way.  We'll certainly let everyone know when we make any decisions.

I don't collect email addresses from the guestbook, so if you would like to have your name added or removed from the list I use to notify people when the website is updated, please send me an email to let me know.  My email address is:

I always use graphics to print email addresses to prevent them from being harvested for spam email lists.


Tuesday - 7/20/04

Dear Mo,
This morning I awoke remembering your passing.  The Wednesday before you passed away we had that incident where you had trouble breathing, you asked us if you were dying and I summoned the courage to say “Soon.”  I was thinking it could be hours or days, I wondered (and still do) if you understood that.  As I recalled that event, I found myself wondering how it was possible that you were not anxious or fearful, and showed only momentary sadness.  How did you remain determined to receive your blackbelt at noon that day?  As I recalled these memories and questions, I remembered what our friend Mike, a lifelong blackbelt, said in the condolence card he gave us.  He explained that “Bushido” is Japanese for “way of the warrior” and that one aspect of bushido is the spiritual feeling that death is something to avoid, not something to fear.  He said that you exemplified the bushido spirit.  You were a powerful spirit – cheerful and fearless throughout your ordeal.  We all referred to you as a warrior in your battle against cancer.  I don’t think I ever fully appreciated how powerful a warrior you were – maybe my head is still too full of fictional heroes like Captain Kirk, Starsky and Hutch, and Frodo Baggins to recognize true heroism.
Throughout this ordeal, people have occasionally brought up the question of why this has happened.  We silly humans think that just because we can answer some “why” questions, that we can juxtapose that word with the unfortunate circumstance of your cancer and come up with an answer.  I’ve never been interested in anyone’s metaphysical opinions on the subject.  If there is a why, it is because of extreme bad luck, or that you were simply more susceptible to environmental toxins than most of the other kids.  When we see that 1 out of 8 women in our country get breast cancer (and the number is increasing), it is clear that we are playing Russian Roulette with natural selection.  Mathew’s dad stopped by during shiva, they fear his cancer is back also.  Most of his lymph nodes have been removed, but one of the remaining nodes is swollen.  As you well know, his family will now live with anxiety until his next MRI, which will be at the Mayo Clinic in mid-August.  Like you, he lived on the side of a hill (he actually lived at the bottom), in the path of the pesticides as they wash into our lakes when it rains.  There are so many sources of toxins – the busy streets, the airports, the vast amount of plastic, the power plants, the material junk we all collect.  I’m so sorry this has happened, but as with all living things, life goes on.  A mother from the PBT listserv sent me Tao Te Ching no.42 “In the Natural Law some lose, in this way profit."  I hope we all may learn about bravery, our own vulnerability, and the fragility of life from you.  Life is harsh.
Today we drove to Chicago for your new cousin Zach’s Bris (ritual circumcision).  On the way we stopped in Waukesha to see Uncle Neil and Aunt Marie’s new condo and to carpool with Uncle Neil.  We had to wait quite awhile for a long train to cross highway 164, I know you would appreciate that.  The Bris was, well, it was a Bris, but there were many relatives there and it was great, if a bit painful, to see everyone at a happy occasion and to celebrate Zach’s healthy birth.  Life goes on.
I’m sure you don’t remember, but we subjected you to that ancient barbaric tribal ritual also.  Mom has said many times that if she had to do it over again, she would not do that.  At the time I didn’t question things as much as I do now, but I don't see how it could be a good idea to automatically amputate something that everyone is born with.  Thankfully we no longer feel obligated to consult any external sources for living our lives, so when it came to handling your death, we were able to keep you with us and mourn your loss the way we needed to.  I remember when we discussed this with you, probably the most difficult discussion of the journey through Brain Cancer Land.  I remember the relief I felt that you were aligned with mom and I on having your cremains remain with us for the rest of our lives.  The thought of you alone with bugs, worms, cold, rain, or leaving you behind if we relocate was abhorrent to all of us.
I received many deeply heartfelt compliments on both the cremation ceremony and your memorial ceremony, so I know that these events have helped others move toward acceptance - a very difficult task..
We love you always,


Monday - 7/19/04

Dear Mo,
On Saturday we had a beautiful celebration of your life.  As we sat in Frank Lloyd Wright’s peaceful contemplative room across from the Medflight landing pads, I could feel your presence manifested in the many people who decorated, played music, spoke and expressed their love for you through their warm condolences.  It was healing to listen to stories about your life – so helpful to try to bury the nightmarish memories leftover from the battle and the pain of having to let go.  It was so touching to see so many people come to celebrate your life, and we have received many, many condolence cards as well.
This morning was my first dream in which you made an appearance – you were driving.  I don’t remember where we were or what vehicle we were in, but when I woke up hanging on to that misty, ethereal image, it occurred to me that perhaps the reason I have been grieving so little since your cremation is because you have been doing some of the driving for the past week.
“Let’s go, dad, its time to stop crying.”
It is not as I thought it would be (we can’t sit around crying all day), and I thank you for that.
Our friends and relatives, some of whom have been staying with us since before you passed away, left yesterday, so today is our first day as a family of three.  We are continuing to live our lives to our fullest.  Today we spent a few hours on State Street.  We bought a few things for ourselves and presents for your new cousin Zach, who was born on the third day after you passed away.  He arrived a little after 1:00 AM, almost the exact time you did almost 12 years ago.  We finally bought a clock for the living room – it has a bunch of gears turning behind the hands – you would’ve liked it.  We are working on shoveling the cancer out of our house and out of our lives.  Of course more than anything we wanted you to be here when the time to do that finally arrived.  We miss you so much and wish you were still with us.
The sadness is constant though we are not always sad.

Several people have asked what we are going to do with Mo's website. We are planning to continue a it as a remembrance of Mo.  We will update it periodically.  Until now, I’ve used 2 lists of email addresses to notify people when the website has been updated.  A large list of everyone I know (for the urgent news) and a smaller list of people who’ve requested to be updated when we post a new website entry.  I am pretty much finished with the larger list, but will continue to use the smaller one.  If you’d like your name to be added (or removed – I won’t be offended), please drop me an email.  I have other writings which I felt were not appropriate to share as we journeyed through Brain Cancer Land, but now that the journey has ended,  I’m considering how I might share those also.
Thanks again to everyone who helped us navigate and endure our trek thru this difficult terrain.  I know we are all heartbroken that it ended with Mo passing away, but it would’ve been infinitely more difficult for us if we hadn’t had such tremendous support.  Our friend Mary was so impressed by our community of friends that she is considering moving back to Madison (again).
I will post some pictures from the memorial service when I get a chance.


Memorial - 7/13/04

Maurice spent his last weekend at home and then his remains were cremated yesterday.  We had a beautiful ceremony in our back yard in which his body was placed into an attractive casket.  Pictures, artwork, toys, notes, and other meaningful things were placed around him to accompany him on the end of his physical journey.
Below is the memorial which appeared in today's local papers.

Maurice passed away at home during the dawn of his life on 7/10/04 surrounded by his loving family after combating brain cancer for 19 months.
Maurice was born on October 1, 1992 in Santa Monica, CA to Anne Eglash and Mitchell Rosefelt.  He graduated fifth grade from Glenn Stephens Elementary School in Madison, WI.
Maurice’s 11 3/4 years of life was a marvelous gift touching people’s lives near and far.  He was a warm and gentle humanist, sensitive and caring to other people and to animals.  He had a profound sense of social justice, and picked his heroes from people who made meaningful contributions to the advancement of humanity.  He loved life, spending quality time with his family and friends, and had a passion for meeting interesting people.  He had a keen interest in politics, always game for a good political discussion.
He loved the ocean, to ride its waves while he explored its depths with his mask and snorkel.  He enjoyed fishing with dad and he loved to play with legos, all sorts of vehicles, and to roughhouse with our dog Mable.  Maurice was proud to be a karate student and earned an honorary blackbelt for his karate achievements as well as his bravery and courage in his fight with cancer.  He enjoyed music, had an excellent singing voice and musical rhythm, and studied drumming.  His favorites were the Beach Boys, the Beatles, Laura Love, David Bowie, and the oldies radio station.
Maurice lived on the humorous side of life and was quick with a joke, which endeared him to those who knew and met him.  He was a charming boy who could engage anyone in a conversation.
Maurice was extraordinarily compassionate making visitors comfortable while seldom complaining about the many discomforts and setbacks caused by his illness.
Maurice is survived by his mother Anne Eglash, his father Mitch Rosefelt, his loving sister Becky Rosefelt; grandparents Hy and Sheila Eglash (Milwaukee, WI); grandparents Shari and Sy Rosefelt (Orlando FL); aunt and uncle Cindy and Saul Brook;aunt and uncle Marie Jahn and Neil Eglash; aunt and uncle Lyn and Steven Eglash; uncle Craig Rosefelt; first cousin Heather Eglash; and many other loving relatives and friends.
Maurice’s struggle is chronicled on his website, www.Mo-HealthUpdate.info.  A memorial service to honor Mo will be held on Saturday, July 17, 2004 at the First Unitarian Society Meeting House, 900 University Bay Dr., Madison, Wisconsin.  The service will start at 5:30 PM, all are welcome starting at 4:30 PM. In lieu of flowers, a memorial fund has been established in Maurice’s name.  Contributions may be sent to
Maurice Rosefelt Memorial Fund
c/o Madison Community Foundation
P.O. Box 5010
Madison, WI 53705-0010

Mo, you will never know how many lives you have touched.
You will always be with us, we love you so much.


Saturday, July 10, 2004 - 7:10 AM
We have crossed our bridge out of Brain Tumor Land
There was not a lot of discomfort but it was a very long walk

Today a magnificent vehicle visited our house.  It was part train, part truck, part crane, part mighty loader, part helicopter… and it had parts from many other vehicles, some of which I think remain to be invented.  The driver was warm and radiant, almost comforting.  So powerful is her presence that for months we have felt her arrival like a change of seasons.  She (or perhaps he, I’m not sure) came to take Mo for his last ride.  She said something about Mo being so loving, considerate and humorous that Life needed him back.  Unlike his other rides, we were not allowed to accompany him, but she assured us he would be very well cared for.  So with rivers of tears we kissed him and said good-bye as he climbed aboard, smiled the thumbs up, and they departed.  Even the sky was crying, as it has been for much of the last month.  He was surrounded by family and friends until he passed.

His presence on this Earth will be profoundly missed.
Many beautiful memories remain.

Oh Very Young, what will you leave us this time?
You're only dancin' on this earth for a short while
And though your dreams may toss and turn you now
They will vanish away like your dad's best jeans
Denim blue, faded up to the sky
And though you want them to last forever
You know they never will
(You know they never will)
And the patches make the goodbye harder still

Oh Very Young what will you leave us this time?
There'll never be a better chance to change your mind
And if you want this world to see a better day
Will you carry the words of love with you
Will you ride the great white bird into heaven
And though you want to last forever
You know you never will
(You know you never will)
And the goodbye makes the journey harder still.
                                                                   Cat Stevens
When you are sorrowful, look again in your heart, and you shall see that, in truth, you are weeping for that which has been your delight." - Kahlil Gibran

Please don't send anything but cards.  We will establish a fund create some memorials to Maurice and perhaps contribute to research for Pediatric Brain Tumor treatements.  We will post details once the fund is set up.

It is traditional for Jewish families to sit "shiva" after a person passes away.  Shiva is part of the grieving process in which relatives and friends visit the grieving family in their home.  During this period of time, family members suspend all worldly activities, and devote full attention to remembering and mourning the deceased.  Our family will be sitting shiva from Tuesday 7/13/04 through Thursday 7/15/04 (3 days as opposed to the tradional 7).  Visitors are welcome between 1pm and 6pm.

We are planning a beautiful Memorial Service for Mo.  It will take place in about a week.
We will post the details as soon as they are finalized..


Honorary Blackbelt - 7/07/04

On Wednesday, Mr Reed (Karate America Founder), Mr. Wideman, Ms. Esse, and another blackbelt instructor, awarded Maurice an Honorary Blackbelt from Karate America.  Mo was very excited to receive this award.  He certainly earned it.  Many thanks to Ms. Esse and everyone at Karate America.


Nunchucks Lesson from Mr. Murphy - 7/06/04

Mr. Murphy was Mo's favorite Karate instructor at Karate America.  After Mo earned the most money at last years Kickathon, Mr. Murphy generously offered to give him a private lesson as an additional award.  Mo had a great time.  Mr. Murphy, who has been practicing Karate for 33 years and has earned many National awards, told Mo that today's lesson was the greatest honor of his career.


Riding in an 18 wheeler - 7/04/04
Thanks very much to
Uncle Steve Eglash
Matson Integrated Logistics
Badger State Western Trucking
Truck Driver Gary Faulk

Gary picked us up in his beautiful Peterbuilt Semi on July 4 after hauling a load of produce from California to Baraboo.  We had a great ride with Mo in the cockpit, and Mom, Dad, Grandma and Grandpa Eglash in the back of the cab.  We had a great time riding above the traffic and learning about driving a semi.


Working a crane on a construction site - 7/02/04
A Wish granted by Hospice of Dane County and Kraemer Construction
Thanks very much to
Hospice of Dane County
Kraemer Construction - Sarah Montezon, Lenny the patient crane operator.

Mo worked for an hour or so laying steel beams into a new bridgeon Highway 113.  Even though, he became tired, he insisted on working to the end of the shift, which ended early as it was the Friday before the July 4 weekend.  Mo helped place 3 beams into the bridge, which is the eastbound bridge over the Yahara River.


Flight on University of Wisconsin Hospital Med Flight - 6/29/04
A Wish granted by Physicians Plus Insurance Corp.
Thanks very much to
Physician’s Plus Insurance Co, Dr. Gary Johnson
Med Flight Director Mark Hansen
Pilot Scott and Flightnurse Sarah who gave us a tour over our very beautiful city


Mo's Make-A-Wish Trip 6/11/ - 6/16/04
6/11:  Fly to Michigan after a warm sendoff from teachers and friends
6/12:  Meet Bill Cosby
6/13:  Ride Amtrak from Niles Michigan to St. Paul, Minnesota
6/14:  Visit Mall of America
6/15:  Visit St. Paul Science Museum
6/16:  Fly back to Madison

With the deepest gratitude to The Make-A-Wish Foundation of Wisconsin and Jan Smith, who were so generous and worked so quickly to make this trip happen.


Sunday, July 4

We’re sorry to report that Mo’s health is continuing to decline. While it is impossible to predict, it appears that he will be passing on soon.  As the tumor progresses we see a variety of symptoms appearing, the most noticeable of which is that it is difficult to understand his speech.  Despite this, he remains in a delightful mood and has been enjoying a number of wish grantings and visits from friends and family.  He is aware of what is happening to him and is seldom set back by it.  In fact he often talks about death as if it was as normal as going to school.
I will try to post some photos when I have time.


Sunday, June 27

Mo’s meeting with Bill Cosby was simply magical. When we entered the waiting room backstage, Mr. Cosby got up from his seat in front of big screen baseball and warmly greeted Mo. As one might imagine, it was incredible just to be able to meet him, and all the more heartwarming to see him befriend Mo. As if responding to some mysterious queue, the theater lost power at the exact moment Mo and Mr. Cosby shook hands. There we were, sitting in the dark with Bill Cosby. We sat in the dark for awhile, making jokes, but when it was apparent that the light might not return for awhile, Mr. Cosby suggested we move into the hallway which was illuminated by a bit of fluorescent light, presumably from a backup power supply.

Mo and Bill had a lighthearted conversation which covered many topics. After awhile Dr. Cosby became concerned about Mo’s tiredness and insisted that food be ordered to perk him up. After about a half hour, Mr. Cosby left us backstage to attend to his audience which was still waiting for him in the darkened auditorium. As bursts of laughter drifted backstage, we wandered back to our seats to enjoy Bill Cosby’s improvisational banter with his audience. At one point he borrowed a cell phone from couple who were sitting in the front row and called their baby-sitter. He predicted that if the power was out at their home, the TV wouldn’t be working and the baby sitter would no longer be there. He reflected the shock of the baby sitter as she answered the phone to find Bill Cosby on the other end of the line:
“No, this isn’t god, its Bill Cosby.”
He asked her if her boyfriend had arrived yet. While the show-in-the-dark was entertaining for people near the front who could hear it, it was no doubt frustrating for people who couldn’t, so Bill cancelled the show (and the 2nd show), promising to return on another date, and he left the theater. I will post pictures soon.

Sunday’s train ride was splendid. The quiet, gentle rolling, the freedom to pursue other activities while traveling at a high speed toward our destination. As evening approached we were treated to a long rosy sunset as we rolled past the ancient rock outcroppings along the Mississippi –shriveled elders who’ve experienced eternity. Shadows oozed out of long forested islands, turning to silhouettes against a fading red sky. And then into St. Paul late in the evening. Mo enjoyed the train - especially the observation car. At one point he told me this was the train ride to the end of cancer. When he woke up in St. Paul on Monday morning he told me that the brain tumor had all been an act – did I think he was a good actor? I told him that he is an excellent actor to pull this off. It has been very convincing. On Monday night he woke up during a dream saying:
“Mom, they’re gone.”
Anne was sleeping, but I was not. I asked him,
“Who is gone?”
“The cancer.”
I pray he knows something that I don’t.

The last 3 days of the Make-A-Wish trip were spent in St. Paul, Minnesota.  The first day we headed to the Mall of America, primarily to scope out the lego store, a great adventure as far as Maurice is concerned.  Becky, on the other hand, applied her shopping finesse to the occasion and found some nice apparel purchases.  To our pleasant surprise, we discovered the excellent aquarium on the mall’s lower level.  It is an undersea world worthy of a visit…a stroll through an aquarium full of sharks, sea turtles, lots of big fish, and staff who enlighten visitors about the fish politics within the large tank.

After a 2 day rest from our Make-A-Wish trip, we traveled to Chicago for Cousin Jeremy and Heather Brook’s beautiful wedding.  It was great to visit with relatives from Dad’s side of the family, whom we don’t see very often.  On the way home we were treated to a visit at Cousin Robert and Pam’s new mansion in the Northern Chicago suburbs (see last September entry for pix of Pam and Robert’s wedding).

Mo’s days continue to start tired, but after awhile he becomes energetic and we find enjoyable activities.  Today, for example, afters a slow start, we had lunch with Grandma and Grandpa Eglash, went grocery shopping, Mo treated us to a drum concert, and we played the game Apples to Apples, and even had some singing and dancing thrown in for good measure.  His disposition remains excellent.  His appetite continues to increase each day, and he even gets a boost of energy after eating.  We welcome visitors who call ahead.

As mentioned previously, we sought other interpretations of Mo’s last MRI.  We received 5 opinions, and while the “whatizzit really?” question has not been answered, everyone agrees that tumor is present and is probably quite extensive.

And finally, it is with a very sorry, heavy heart that I have to inform everyone that we have enlisted the assistance of Hospice in caring for Mo.  While he continues to have enjoyable days, his health is declining – it appears that the chemotherapy is not stopping the progression of his tumor.  Perhaps one of the benefits of living in a bleeding heart liberal community is that there is a lot of compassion and we have a well-endowed, comprehensive Hospice organization.  They offer a wide range of services including healthcare, counseling, and even some wish granting.

Almost every person I’ve informed about this latest development says the same thing, which is:
“I don’t know what to say.”
Aside from stating that I personally have not given up hope, and thanking everyone for all the support in its many forms, I don’t have much else to say right now either.

At the risk of being ungrateful, I'm going to request that people refrain from sending us lots of stuff.  Of course we deeply appreciate everyone's sympathy and empathy, but I find it painful to have to throw away a lot of non-biodegradable stuff where a card will be greatly appreciated.  It is my firm belief that the reason we have SO MUCH cancer is because we are severly toxifying our environment due to our vast, uncontrolled consumption.  Everything has a history - it comes from somewhere, pollution is created when it is made and shipped, and then it needs to be disposed of.  On a planet of 6 billion consumers, this is a sacred understanding for the health of all life.

A special thanks to Grandma Shari and Aunt Cindy, who have been so very helpful around here during the last month.

I’ll post some pictures of our recent adventures soon.


Wednesday, June 9 - Quick Update

First of all, Mo is feeling great. He is generally tired in the morning and then his energy builds up as the chemo from the previous evening wears off.  Once he gets going he is a major chatterbox, joking for much of the day.  Another side effect of the chemo is appetite stimulation, and it appears that this time his appetite is coming back for real.  He eats a bit more each day, and is up to about a half a meal/day. You’ve never heard so much praise for a grilled cheese sandwich, corn on the cob, or a salad.  On Monday we went to Chilis for dinner, which was Mo’s first trip to a restaurant since we were in Memphis last September.  Not too paint too rosy of a picture, we're talking quantities like a half of an ear of corn for dinner.  Great progress, but not enough to pitch the enteral feeding.

Wish goodies from the Make-A-Wish Foundation

The other big piece of news is that Mo’s Make-A-Wish trip has been moved up to this weekend. On Saturday (6/12) he will be meeting with Bill Cosby in Benton Harbor, Michigan.  Mo has been looking forward to this meeting for a long time, and has compiled a great list of questions and compliments. On Sunday, we will board Amtrak for a 12 hour trip to St. Paul/Minneapolis.  We will stay there for 2 days, visiting the Mall of America and other attractions (and looking for the best grilled cheese/vegetarian food in town).  After returning on Wednesday, we will rest for a couple of days, and then head to Chicago to attend Cousin Jeremy’s wedding to new-cousin Heather.
Today Mo attended school in the afternoon to check out the faculty talent show (let's just say the faculty are brave).  After school Mo made the rounds, chatting and reminiscing with teacher past and present.  It was a wonderful end to the school year.

On Friday, Mo graduates 5th grade at Glenn Stephens Elementary.  Mo is planning to thank the students and teachers for the tremendous support during this challenging time.  Hopefully he will be able to get up early enough to attend.  If not, please know that we all deeply appreciate the incredible support and assistance we have received from the Glenn Stephens Community.

Saturday we dusted off the fishing poles and headed over to Lake Waubesa.
The weather was great and the fishing wasn't too bad either.
Do the size limits for Largemouth Bass apply to dogs?


Thursday, May 27

Our ‘less good news’ has taken us down a slippery slope into a thicket of fear and uncertainty.  After doing further tests on the unusual spots found in Maurice’s most recent MRI, the consensus among the UW doctors is that Maurice’s tumor has likely reoccurred.  A MRI metabolic study of the brain, called spectroscopy, indicates that it is highly likely that the MRI shows a tumor, but they have never seen these kind of tumor-like changes before with a medulloblastoma.  This has called the question “whatizzit really?”, and we have been seeking other opinions.  Has the tumor really occurred, or are these MRI changes something else?  The best way to know is to biopsy the brain, but Maurice’s UW doctors, his family, and Maurice himself do not want another brain surgery for Mo.  So, we are waiting for a third opinion on these MRI findings from the Dana Farber Institute in Boston, and in the meantime, we are starting a new chemo protocol designed by a specialist at the Dana Farber Institute.
While we have been living under a dark cloud for the last week or so, Mo’s attitude has once again produced the silver for the lining.  With some pain and sadness he is adjusting to this unfortunate development, leading the way for the rest of us.
For the last couple of days we have been living very much in the present.  Mo has been tired, so the days are mellow.  He has been enjoying lying on the couch, and talking with whoever comes by to talk, laugh, and cuddle.  He is not at all uncomfortable, and has been his usual, entertaining, chatterbox self.  Yesterday and today we made videos while his tutor Corinne was here. Lots of talk about Muppets, TV, movies - we are amazed at the things he remembers…
We'll keep you posted.


Monday, May 17

Today we took a long walk down the short hallway to the MRI.
The good news is that Mo's tumor bed, where both tumors were found and removed, remains "stable" (the MRI word for no changes).  The good news also is that the new spot which we found last time in a different part of his cerebellum is gone.
The less good news is that there are more of those spots (lesions of the kind that disappeared from the previous MRI).  The less good news also is that there are some abnormalities in other parts of Mo's brain, though they don't look like tumors.  The docs don't know what they are, and further testing will be done, probably later this week (perhaps as early as tomorrow).
The MRI is an amazing machine.  It has an immense magnet which causes all the protons in the target area of the body to spin in the same direction.  Then it buzzes, knocks, and scratches out all sorts of weird arcane rhythms as it sends radio waves into the aligned protons, disturbing the magnetic field and allowing them to spin in their natural direction for a fraction of a second.  As the protons switch into and out of their magnetized state, they give off energy, and by the magic of science, an image is built from this energy.  Different materials within the tissue react at different speeds, and thus the structures are imaged.
As I sat through the various procedures and accompanied Mo during the MRI, it occurred to me that this is like visiting with an astrologer, palm reader, or some other soothsayer.  We come to be told what the future holds.  Of course the difference here is that we come away with some facts.  While I have infinitely more faith in the oracle of the MRI than I would in a psychic, it certainly didn't give us a much better picture of the future this time around.  Inconclusive, but that is much better than bad news.
We do have the good news of the stable tumor bed, and as Anne points out, after all Mo's brain has been through, it is going to be doing some healing.  Hopefully what we are seeing in the MRIs are snapshots of that healing.  I remind myself that if we are going to reach a cure, the road will have some bumps.
On Wednesday Mo has a 3 month checkup with Dr. DeSantes, the BMT doc.
We'll keep you posted.


Saturday, 5/15/04

“How’s Mo?”
As one might imagine, we hear this question frequently, and we are thankful to be able to answer that overall he is doing very well.  Despite the challenges, the weeks remain filled with a lot of laughter.  At the core of recent progress is an improvement in sleep.  He is falling asleep earlier and reaching a deeper sleep more quickly almost every night - especially during and shortly after his breaks from chemo (six weeks on/two weeks off).  He generally wakes well rested between 9 and 10.  This has led to improvements in his energy level, strength, balance, ability to concentrate, and general happiness.  Despite our seemingly endless efforts to adjust his meds to improve his sleeping, it appears that the most potent tonic has been what Dr. Anne calls the tincture of time.
But, to be specific, the question “How’s Mo?” has a complex answer.  As the dust of the Bone Marrow Transplant (BMT) settles, we can see that Mo has several distinct challenges - each with its own issues, recovery schedule and recovery potential.  The list goes something like this:
Strength, Energy, Balance
Hearing and Education

Back in uniform to pose for the UWCH monthly magazine

For a while yet (perhaps another year), Mo will continue to have an MRI scan every 2-3 months.  Families dealing with pediatric brain tumors (PBTs) learn to adapt their lives to the interval of time between MRIs.  Mo's next MRI is on Monday May 17.  His previous MRI showed a new abnormality in a different part of his cerebellum.  The docs in Madison and Memphis feel that it is not a tumor, though if there is something you will never find in the Land of Cancer Treatment, it is certainty, therefore, we are all a bit nervous.
A Dilemma
Mo continues to be on a home-based chemotherapy regime, but here life has presented us with a dilemma.  One of the medicines which Mo is taking has shown to be very effective against medulloblastoma cells in laboratory tests.  Many of the Oncology docs around the country are very encouraged by these results and are moving forward with using the drug as part of a treatment plan.  However the drug can also have nasty side-effects including depression, sleep disruption, and stomach problems  The treatment plan, which is untested, designates taking the medication two weeks on, two weeks off, continuously for about 1 year.  Mo has already experienced quite a few side-effects, so we have drastically reduced the dose to a level which he finds tolerable (which is about the very least amount we could give him).  As often happens in the ordeal of PBTs, we have reached a point where the path branches (one path, a low dose, real benefit unknown; the other path, stop the medication, and possibly lose out on it's benefits) and we have very little knowledge with which to make a decision about which branch to follow.  While we know some of the risks, nobody knows what the traveling conditions will be like or what will happen along the way.  With little knowledge we try to balance risk with quality of life and forge ahead.  There is no standing still though I often wish we could.

                                     Tooling around in Cousin Mike's Porsche and neighbor Joel's Corvette

While there are developments in eating, none of them have to do with actually eating.  Mo continues to depend entirely on enteral (feeding tube) feeding for his nutrition. Unlike some of the other children with brain tumors who's parents we are in contact with, Mo has never been able to handle large "servings" of the liquid food (bolus feeding), nor have we been able to feed him at a rate higher than 85ml/hr (and even that causes problems). As a result, Mo needs to receive food pretty much continuously.
On 4/26 Mo had an xray study of his upper intestinal tract,called an upper GI, to see how well his stomach was emptying. We found that he had serious gastroesophageal reflux (which excited the GI doc but was no surprise to us), but we also found that he has "Superior Mesenteric Artery Syndrome". This is a relatively rare condition in which the stomach is squeezed by a few arteries that surround the stomach, making the stomach difficult to empty.  The squeezing is less severe when Mo lies on his side, which is why we are able to feed Mo at a higher rate at night with fewer problems.  The GI doc explained that the condition is caused by a sudden weight loss, which causes the loss of the fat which provides a cushion and support of the arteries so they don't impinge upon the stomach.  Mo actually gained quite a bit of weight during his bone marrow transplant (he was on IV feeding or TPN), but has lost all of it and then some since then.  So at least we know why he has had some trouble with the tube feeding.  The other helpful discovery has been the use of an "elemental" liquid food, which is much easier to digest.  He has significantly fewer problems with feeling full since he started using it.

Strength, Energy, Balance
As we move further from BMT and sleeping improves, more stuff gets done.  Mo actually walks around the house a little bit without any assistance, although he is much safer when he uses his walker.  We all hold our breath when he does this, and in his eagerness to walk he has taken a couple of nasty falls.  He fell down 2 stairs in the garage on the way to a party at school, the pain and anger of which caused him to miss the party.  A fall on Mother's day put him back in the wheelchair for the last week with a very sore knee.  While he is out of the wheelchair alittle, the pain and weakness persist, so we will probably have to have the knee checked out.  Unfortunately it looks like this will set his walking progress back a few weeks.
When the warm weather graces us with its presence, Mo sits outside and squirts Mabel with water, plays some gentle sports, or just enjoys the fresh air.  On 4/21 he attended school to show off his beautiful new head of hair in his class picture.  I brushed his hair as we prepared to go.  He commented that this was the first time in a year and a half that he has had enough hair to brush.  This progress marker hadn't escaped my notice either.
In January, when he started PT, Mo was not able to sit on the floor - his muscles were stiff and it hurt to bend his knees.  Now the living room is once again cluttered with Legos and toy cars and the music of Mo's playing and pretending can once again be heard in our house.  Mabel, who has been amazingly gentle with Mo throughout this ordeal, again has someone besides Becky and I to disturb her laziness.

It has occurred to me that, under normal circumstances, we would probably be devastated if our child had a sudden severe hearing loss.  But in this exceptional situation, we didn't even have time to think about it when it occurred.  It's kind of like Star Wars, when Luke Skywalker's hand is severed during a fight, but he can't be bothered with minor detail like that, he just keeps on fighting.  But now that that battle is over and we are addressing the wounds, we have realized that unlike Luke, who lives far enough into the future to receive a bionic replacement, technology is not advanced enough to help Mo communicate thoroughly - especially in school where he has to absorb a lot of information in a short time.  There is an answer, but it is low tech: sign language.
As we have looked into options for hearing disabled students, we have realized that learning some sign language will allow Mo to fully understand and participate in the classroom.  Fortunately, there are target schools in Madison (one each of elementary, middle, and high school) which provide comprehensive programming and staffing for hearing impaired students.  We have only recently realized that we need to incorporate this into our lives, so plans are still being formulated.  Look for sign language lessons at the Egfelt house in the near future.  Mo's hearing loss is one of several sources of frustration as we navigate this ordeal.  There are many times when it is difficult or impossible for him to participate in conversations in our home, much less out of the house.  We have already started using finger spelling to spell words which Mo has trouble understanding, and I look forward to learning sign language and eliminating some (maybe even all) of these frustrations.

Final Thoughts
As Don Miguel Ruiz points out so insightfully in his excellent book, The Four Agreements, we all wander through life submerged in our own dreams.  All of our hopes, aspirations and expectations are tightly knit into our beliefs and our personal vision of who we are, what we want from life, what we want to become.  Our lives are guided by those dreams - they draw us forward.  While nearly everyone's life has been touched by cancer (so toxic has our environment become), when it hits close to home you learn that cancer infects our dreams as well as our bodies.  And it is not only the dreams of the cancer victim which are infected, but the dreams of parents, siblings, grandparents, relatives, friends, teachers, and many others within the victim's sphere of influence.  Each person's dreams are uniquely infected.
The dreams of children are especially vivid.  To have a conversation with Mo is to get a glimpse of his dreams.  In any given week you might hear of plans to be a policeman, mechanic, comedian, actor, railroad worker, reporter.  It has become clear to him that there are some things he will no longer be able to do, but, amazingly, when he is feeling well his dreams show little sign of being infected.  During treatments and when he is feeling lousy, when he needs to focus on acute issues, his dreams retreat, no longer evident in his personality.
The dreams of adults are more complex than those of children.  They are a more intricate tapestry.  Woven into the fabric of parents' dreams are those we have for our children.  When a child shows an interest in anything, we envision tremendous success - president of the US, a rock n' roll drummer, police chief...  Cancer is caustic to dreams.  Some dreams are dissolved by cancer, others injured, others disfigured.  Only the very strongest dreams can resist the infection.

Partying hard at cousin Mindi's and Howard's wedding 5/1/04.

Most peoples' lives are marked by events which act sort of like bookends for periods of time.  Anniversaries, birthdays, and paychecks are common events for marking time.  For families infected by brain tumors, MRIs also mark periods of time.  The MRIs are scheduled to tell us what is happening before any symptoms are likely to appear.  Each MRI puts paint on the canvas of our lives until the next MRI.  We can look ahead and see what will probably happen.  In an instant, an MRI can drastically change our knowledge of the present. Understandably, MRIs are scary, and cancer infected dreams are very vulnerable to FEAR, so as an MRI nears many dreams become dormant.  Our expectations for the future become tentative.  As the future blurs, the present becomes poignant and hangs more heavily in the air.  "Take one day at a time" we have all learned.  A dull moment can be enlivened by a joke, pretend play, playing with the dog.  You must strive for quality time because now is the only time you are guaranteed to have.  Someday Mo's MRIs may be a year or more apart, but for now they are 8 - 12 weeks.  Next Monday is Mo's MRI.
People often ask what they can do to help Mo.  He already has much more than enough to do during the hours when his energy is good, so he really doesn't need any gifts (well maybe a couple more comic books).  To break the routine, a visit is probably the most valuable gift you can give Mo.   But I think another thing you can do is to learn from Mo's experience, so as we near the next MRI, and my dreams become unglued, and I lose sleep like so many of the other parents of children with cancer who approach THE TEST, I will climb onto my soap box and say this:
Maurice is the second rare, life threatening childhood cancer to occur within a block of our house within a 2 year period (the second cancer that I know about, there very well may be others).   A couple of years ago our accountant, a neighbor and a healthy woman in her mid fifties, developed and died of breast cancer within a year. She was a wonderful woman - I'm sure she was looking forward to an enjoyable retirement to end her life.  In another family nearby, both parents developed cancer a couple of years ago.  The father died within a year.  The mother continues to struggle with breast cancer.  As mentioned on Mo's home page, my childhood friend Chris McHugh fought a 5 year battle with breast cancer before passing away at age 40.  I've met a couple of kids at the hospital with life-threatening cancers who are from Chris' small town near Madison.  My cousin Janice and her husband Arnie both passed away from cancer about 8 years ago.  It is clear that these cancers are a response to the toxicity of our environment.  There is a plethora of studies which demonstrate the links between chemical exposure and cancers.  I could go on about this for ages, but the bottom line is that with our unprecedented capability to produce and consume stuff, we generate an unprecedented amount of pollution.  We all know that cars dump vast quantities of pollution directly into our habitat, but consider that every lake in the US is polluted with mercury from our power plants - that mercury doesn't just fall in the lakes, it is everywhere. Consider that when you drink a can of soda or a bottle of water, the production, shipping, and disposal of that "beverage" uses vastly more energy and creates much more pollution than is justifiable for quenching one's thirst.  Consider the amount of pollution we produce when 6 billion people each drink a single can of pop. In the US alone, we consume over 10 billion cases of soda per year. Why on earth do we need to import water from Fiji or France?  I wish I could calculate the amount of pollution dumped into our habitat when we ship a boat load of water from Fiji and distribute it throughout the US.  Environmental Toxicology 101 will tell you why we shouldn't.
We are playing a game of Russian Roulette with our uncontrolled consumption.  Our bodies are cauldrons for mixing toxins.  Those with the least tolerance lose the game.  Consider:
More than a half million US citizens will die of cancer in 2004.
Almost 1.4 million new cases will be diagnosed
Cancer strikes one in every 333 persons by the age of 19.
1 in 8 women in the US will develop breast cancer in their lifetime
3 out of 4 men will develop prostate cancer in their lifetime.
I shudder when I look out the window and see people dumping tens (perhaps hundreds) of thousands of gallons of poisons onto their lawns (in Madison alone).  I cringe when I watch the children play on or next to poisoned yards, when I see the wind carry the chemical laden dust into our windows, when the rain washes the residual chemicals into our 5 lakes. We didn't use to do this, it is a product of chemical companies looking for new markets for their wares and it is very unsafe.  A couple of years ago I found a dying chipmunk in our yard, it was stiff and shaking.  It had been poisoned when a neighbor had their lawn sprayed.  What folly to think that these chemicals are safe!  There are healthy alternatives to poisons for those who want to a homogenous green lawn.  In Madison, a group of people has organized the Greater Madison Healthy Lawn Team to provide information for habitat-friendly (and I'm referring to our human habitat) techniques of lawn care.
There is lots of information on the web about the dangers of chemicals.  You won't find it in your newspapers because the implications for attacking the cause of cancer (i.e. reigning in our consumption) are too frightening to manufacturers, perhaps society as whole.  There are many articles on the link between chemicals and cancer at the Chem-Tox website.  Here is an example:

Neuroblastoma Linked to Homes Treated with Pesticides
SOURCE: Epidemiology: 12(1):20-26, January, 2001

Neuroblastoma accounts for approximately 10% of all childhood tumors...approximately 1 per 100,000 children under age 15 on a national level [are affected]...It is a very serious cancer as approximately 60% of children over age 1 who develop neuroblastoma do not live 3 years even when receiving treatments of radiation and chemotherapy. Children under age 1 have a more positive prognosis...
...Results showed that using pesticides in and around the home resulted in a 60% increased likelihood of children developing the disease (Odds Ratio=1.6). Looking at pesticide use for the lawn and garden only resulted in an increased risk of 120% (Odds Ratio=2.2) when the mother had applied pesticides in the yard and 50% higher (Odds Ratio=1.5) when the father had applied pesticides in the yard. (Chem-Tox Note: Outdoor pesticides are much different from indoor pesticides as they include fungicides and herbicides some of which have been reported to contain dioxin).

The Center for Children’s Health and the Environment website also has information about the
relationship between cancer (and other serious childhood maladies) and chemicals.

In closing this entry, I pay tribute to 2 children who were lost to brain tumors in recent weeks.  7 year old Savannah, who passed away on 4/30/04 about 18 months after diagnosis.  If you visit her webpage, you will see her picture and a picture of her portrait tattooed on her mother Lisa's body.  I think you would have to look far and wide to find any literature more touching and graphic than Lisa's chronicle of Savannah's last days and saying good-bye.  Also, Maddie, a 14 y/o young lady from Minnesota who passed away on May 6 about 1 year after diagnosis.  Maddie's family did not participate on the same listserv that I am on, so I don't know them, but I was struck by the fact that she authored her own website for most of her journey through this land.  It shows amazing maturity and bravery.  Both Savannah and Maddie died from an incurable type of brain tumor (diffuse pontine glioma).  How does young innocence face a slow tragic death?  Check out their websites.

I apologize if I offend, but I can no longer conscience holding my tongue.  Please think about your consumption.  There is only one habitable planet within reach, and we are on it.  We all swim together or we all sink together and we are all part of the problem.  The only question is how much a part of the solution each of is, which is answered by how we consume.  I'm not suggesting we revert back to stone age technology, but it is beyond a shadow of a doubt that we can all drastically reduce the amount of pollution for which we are responsible.

Don't do it for Mo, his hand has been dealt and we are playing it out.  Do it for yourself, your family, your neighbors, your retirement ;-)