Saturday, 4/5/03 - Dad

We received some great news on 3/26.  Mo had a battery of tests including an MRI, and the results of the MRI were negative (which is what we want). This means there are no detectable cancer cells!!!!

In fighting form at Karate class.

We are going to use acupuncture to try to mediate some of the discomfort of chemotherapy.  At his first treatment yesterday he made a Herculean effort to overcome his fear of needles and let the acupuncturist place a few needles in his arms and legs.  The needles are hair-thin, nothing like the needles in the hospital.  For the most part he didn't even feel them when they were inserted. Before the treatment he wouldn't agree to a deal of a new toy in exchange for trying a needle, but he laid claim to his compensation on the way home.

   Enjoying the fine Spring weather before Winter turned around and came back.

Mo continues to make progress on all fronts and to be very busy.  He is working hard on finishing school projects before our Spring break vacation on Tybee Island, Ga.  His voice has gotten much stronger in the last couple of weeks and karate and drumming both show improvement in strength and coordination.  If there is any sign of improved health, I'd say the return of his ability to sleep late on school days and wake up early and watch cartoons on weekends in a good indicator.  

Friday, 3/21/03 - Dad

   "A new normal."
Early on, Dr. Puccetti, Mo's oncologist, told us our lives would take on a "new normal".
We are about 3 weeks into our 7 week break, and new normal is a good description of the shape our lives have taken.  Mo continues to improve each day, and he is busy working at it!  He has much more to do than we can fit into a day, so we try to balance his activities to cover the progress he needs to make in various areas.  His new normal until Spring break goes something like this:
  1-2 hrs of school in the morning.
  A quick lunch followed by 1.5 - 2 hrs. of individual instruction by a tutor
  A snack followed by a couple of hours of physical acitivity which includes dog walking, drumming, PT, OT,
      speech exercises, and karate practice (though not all of them everyday!).
  A bit more homework and a short TV break before dinner.
  A bit more homework and a short TV break after dinner.  Cartoon network and CNN are his favorites.
There are also rehab and medical appointments on some days, and once a week we try to attend a meeting with other kids who are being treated for cancer which is held at the University Hospital.

   Now that the dust from radiation and chemo has settled a bit, we are able to observe and assess the significant challenges which have been left by the removal of the tumor.  In particular, Mo's right arm and leg need strengthening and retraining, as do his vocal chords (he speaks quite softly).  Drumming and karate continue to play an important role in the rehab process.  This evening Mo restarted his karate class, which is fantastic.  He had graduated to purple belt just before the tumor was removed, so this was the first class he attended as a purple belt - and he did a great job!  His daily practice of many rehab activities and his return to karate just 3 months after surgery and 3 weeks after chemo/radiation are a real testament to his strong determination and spirit. Drumming provides a unique challenge as it requires the use of both hands and both feet.  Mo has great rhythm, so his brain knows what his hands and feet should be doing, but his right arm is not always cooperative.  This is a source of some frustration, but also a motivation and a measure of progress.  Rehab is a slow process, something we're not accustomed to in our culture of instant everything...

   As one might imagine, we are really looking forward to a vacation on Tybee Island (near Savannah, Georgia) with Grandma Shari and Grandpa Sy during Spring Break.

   We are also preparing for next course of chemotherapy (which begins 4/21).  It will consist of 8 six-week courses which I have outlined on the calendar in the treatment section of this website.  I am planning to add a bit more detail on that page, but I would point out that the first treatment of each of those courses occurs in the hospital and we are expecting some discomfort.  Those treatments consist of 3 medicines as opposed to the single medicine which Mo received during his previous chemotherapy (he will also recieve that single medicine on the 2nd and 3rd treatments of each of the upcoming courses).  These medicines are very powerful and can produce a wide variety of side-effects, which vary greatly from one patient to another.  We are planning to implement more complimentary (alternative) therapy, which we will write about.

As you all know, this illness has altered the course of our lives.  As a part of navigating and adjusting, we (especially Anne) have read a lot of literature.  For anyone who might want more insight than is being provided on our website, there is a lot of info on the web. As a recommendation, you might look at Understanding and Coping with Your Child's Brain Tumor, which is published by the National Brain Tumor Foundation.  It requires the Acrobat Reader, which probably already on your computer (it should open automatically if you click the link).  It is well written and not-too-technical.  In particular, there are sections on chemo and radiation.

To end on a positive note, I'd like to share these pictures from the last few weeks.

A coupla weeks ago Mo decided he'd like to get his head shaved, as his hair had become rather sparse, so on 3/9 Anne purchased an electric razor and we set to it.  No reason to stop at one family member, that razor kept right on going.  Put your mouse over the arrow at right to see:

This has made a big difference in that Mo no longer feels the need to wear a hat when he doesn't need to protect his head from the elements.

We also had one of our cherished celebrations on the day after the completion of chemo, here are a few pix:

The jolly good fellow

Sunday, 3/2/03 - Dad

  Of course the very biggest and best news of the week has been the completion of both radiation therapy and the first part of chemotherapy.  This week Mo received a full dose of the chemo medicine, and between the Cranial-Sacral therapy, his daily practice of the excercises given to him by Heidi, and the medicine for his digestion, he has had no digestive system trouble at all and in fact he gained over 3 pounds again this week.  I guess I can stop writing about it now...

Some of the staff who assisted Mo during his radiotherapy treatments.  Dr. Mehta, his radiation oncologist, is on the right.
                                    Many thanks to all of you.
With a course charted for his pre-tumor lifestyle, Mo has started various therapies to finish recovering from his surgery, which, we have learned, is medically considered the first step in treating a brain tumor.  This week he met with a speech therapist, an occupational therapist, and a physical therapist.  Each completed their assessments and he was given excercises by PT and OT.  Fortunately Mo is able to include drum practice as part of OT, and karate as part of PT.  Therapy is much easier to do if you enjoy the activities.  Yesterday, we even snuck in a drum lesson, and today we spent a good hour playing in the warm water pool at the health club.
It's hard to believe that it has been 2 months since Mo's diagnosis, and that he has completed his radiation treatments and the first round of chemo.  Mo has shown great stamina and courage, and I am very proud of him.  During the last 18 radiation treatments (the IMRT "boost"), he had to lie perfectly still and the staff often remarked how well he was able to do this, sometimes when he wasn't feeling well.  For me, it has gone by very quickly though at times it is still hard to believe that all this has happened.  As we wind this phase down, I would like to thank everyone for all the support you have given to our family.  All the walks, calls, emails, cards, food, and other caring gestures have been invaluable in helping us navigate and adjust to this situation.
Cancer treatment is a world unto itself which operates alongside the "normal" world.  It has its own schedule, its own locations, and its own inhabitants - the doctors, nurses, technicians, and the other patients who are receiving treatments at the same time.  It's a complicated world we are generally afraid of - we don't learn the details about this world unless we have a good reason (and the good reason is probably an undesirable situation).  As we meet other patients in this part of our journey, I realize that each of them has a unique story, a unique treatment.  Like us, they've become experts in the details of their treatments and each story very different from ours.  I have learned many things from this experience, and one of them is that when someone has an illness, don't be afraid to talk to them about it.  They will tell you if they don't want to discuss it.  Another major lesson is that no gesture of kindness or care goes unnoticed, no matter how small.  Each comfort is a victory...

I will probably not post many messages during the break, but look for a message from Mo and another from Anne with a few more pictures.  I am also planning to update the schedule, and add a bit more info about Mo's treatments.

Once again, I can't thank you all enough for your generous support.

Saturday, 2/22/03 - Dad
   Okay, so I am running behind on updating Mo's website, what else is new?
Mo has had another excellent week. He has continued to eat a lot and gain back his strength.  If I sound like a broken record, that's fine.
Monday brought 2 fieldtrips.  In the morning we met Mo's classmates at the Civic Center to watch the Shanghai Acrobats as they treated Madison school kids to a performance of their breathtaking acts.  Oohs and aahs echoed through the theater for an hour.  The Shanghai Acrobats alternate with the Peking Acrobats in annual performances in Madison.  These never-a-dull-moment performances represent the epitome of athleticism and grace.  Our family has seen them several times and if you've never seen them, I couldn't recommend them more highly.
Monday afternoon we shifted gears and met with Wisconsin's Lt. Governor, Barbara Lawton, to discuss the state of the state. Grandma Shari (no political slouch herself), came with us to to add a bit of spice.  Lt. Governor Lawton shared some of the experiences this new adventure has brought into her life, including a flight in a Blackhawk helicopter to meet Wisconsin's military commanders and a meeting with Vice President Cheney in Washington last week.

Mo and Lt. Governor Lawton discuss some of the finer points of politics.

   Mo is very interested in politics so this was a wonderful opportunity for him to glimpse behind the closed doors at the Capitol and meet someone with a good heart who is working in a high level of the state government.
Thanks very much, Lt. Governor Lawton.  You go girl!

     At Tuesday's chemo appointment we learned that Mo gained over 3 pounds since last week.  This was great news as there has been quite a bit of concern that he would not be able to eat enough to gain back the weight lost since surgery.  He was given 3/4 of a dose of the chemo medicine this week to attempt to avoid the side effects which plagued his digestive system after the first 2 chemo treatments.  Once again Heidi gave him cranial-sacral therapy and he used the alternative medicine for his digestion, and once again he had no problems at all!  In fact, his digestive system appears to have finally returned to normal.  I think we have got this aspect of the situation under control, reducing a major source of apprehension as we move forward.  Looking back, I would cautiously say that the problems we had at the beginning cast an additional dark shadow over this whole experience which lowered our expectations more than they needed to be lowered.  We have been a bit gun-shy in allowing them to be raised up.  The other great news delivered at Tuesday's appointment is that the break between the first and second phases of chemotherapy will be 7 weeks rather than the 4 week break we were expecting.  This means we will have Spring break off!
As the week progressed, Mo continued to resume the activities which shape his life - even some of his favorites.  In addition to the slavedriver who masquerades as his father, he has a tutor who is helping him catch up with his schoolwork (once again getting an "A" on his spelling test this week), he has practiced his drums several times (rhythm still perfect, also an excellent activity for strengthening and coordination), he has read all the emails which have accumulated for the last couple of months (many thanks to everyone), and today we went swimming, which I think felt great.  We have also welcomed the return of laughing fits, talkativeness, and a major interest in playing with legos.  The household feels better...
Monday is the last dose of chemo for this part of treatment and Wednesday is his last radiation treatment, so look for more good news and celebration next week...

Sunday, 2/16/03 - Dad
   We had a very good week and weekend.  Monday and Tuesday were filled w/various appointments and therapies, but we attended school on Wed.-Fri mornings and for the class Valentine's Day party on Friday afternoon.  On Tuesday we learned that Mo had gained a pound from the previous week, which was very good news, and he continued the week with a strong appetite, twice downing 1/4 of a pumpkin pie for breakfast.
After our experience with the previous doses of chemo, we re-strategized our approach to keeping Mo's digestive system moving when we restarted chemo with a half dose on Tuesday.  Mo's doctors took Anne's suggestion to try a new medicine which is used in Canada and Europe, and our friend Heidi Piatt gave Mo Cranial Sacral Therapy and also taught him some excercises, which he has been practicing with Grandma Shari, who has come from Orlando to help out.  Thankfully, Mo had no problems this time around and his digestive system continued to improve through the week.
Saturday Mo attended the Model Railroad Show, an national event held annually in Madison.  He went with Anne and Grandma Shari.  A good time was had by all.
This afternoon we went to Rocky's for a piece of pizza and a spin around arcade with Mo's friend Evan (on the far left in the picture on the right).  A whirlwind of tokens, tickets and prizes.  Tomorrow holds 2 big field trips in store, but more about that later.
Rather than ramble on, I'll sum things up with 2000 more words...

This week brought less of this...

...and more of this!

2/13/03 - Mom

Celebrating the completion of the part 1 of radiation therapy.
Hey, you gonna share that thing?
  Yippee!  We are finishing up a week that started with a dose of chemotherapy, and Maurice has done wonderfully!  He has had no abdominal complaints, and his energy and strength have improved.  In fact, he has out-eaten everyone in the family today.  Nothing could be sweeter than a Valentines Day that Maurice can enjoy.  I hope that all of you reading this are having a healthy and loving Valentines Day too!

Monday, 2/10/03 - Dad
It is hard to believe 10 days have passed since my last entry.  Time passes just as quickly these days, but life is slower.  People move slower when they aren't feeling perfect, and it takes more planning to accomplish tasks.  There are fewer events in the day, so in some ways our lives are simpler.

Last week finished with flying colors and this weekend was much better than the last one.  The abdominal cramping which plagued Mo after the last dose of chemo wore off on Monday 2/3.  On Tuesday, he had a negative reaction to a drug we were going to use to prevent a recurrence of the cramping, so Dr. Puccetti, his main oncologist, decided to cancel his chemo, which made it two weeks in a row without chemo.  By Wednesday he was feeling much better, and we attended school in the morning. What a great feeling when everyone in the class gave Mo a warm welcome as he entered the classroom!  As discomfort subsided, appetite and strength increased steadily through the week  On Friday, we discontinued the overnight IV nutrition.
In addition to eating and school, last week saw the return of walking (we use the wheelchair when there is a lot of discomfort), homework, playing games and a few family meals.  Grandma Sheila from Milwaukee spent the week helping out with cooking and almost all of the daily chores (including some homework), which was extremely helpful.  There is much to do around here, and a minute saved can always be put to good use.
Tonight Mo felt great and we had a a nice family meal which included some bubbly conversations. For dessert we had a little celebration of the end of the first part of radiation (which occurred on 2/13).
   Don't take simple pleasures for granted.

Wednesday, 2/5/03 - Mom
    Because Maurice's last dose of chemotherapy led to a paralytic ileus, meaning that his large intestine was paralyzed, he has not received chemo for 2 weeks.  This week he will continue recovering, and will restart chemo next week.  He has finally emerged from debilitating abdominal pain, mustering as much good humor and political rhetoric as he finds possible.  Maurice still cannot eat enough daily for adequate nourishment, so he is receiving intravenous nutrition at home this week.  He tackled a few hours at school today, and received big cheers and warm hugs when he entered the classroom!  His visit was therapeutic for everyone!  We are looking forward to improved strength and lifted spirits this week while we relish this little chemo vacation.

Friday, 1/31/03 - Dad
    When we setup the website, I fell behind in publishing the news.  Rather than catch up from the beginning, we started publishing up-to-date info as that is the most important function of the site.  I finally finished some descriptions of the first week of treatments.  See "Treatment Begins" for details.

Friday, 1/31/03 - Dad
    To be honest, and I'm tempted not to be, this has been a rough week.  Mo has always been sensitive to medications, and the chemotherapy drugs he is and will be taking are in a different class than the drugs that the rest of us are used to taking for our typical aches and pains.  Last Saturday, two days after chemo, he began having serious abdominal cramps, which can only be controlled with strong pain medication. The cramps were very painful and the medicine caused him to sleep a lot.  The cramping continued through the weekend, and on Monday we visited the hospital for an x-ray.  Temporary paralysis of parts of the digestive tract is known side effect from the chemo, and it turned out that Mo was experiencing this problem and was unable to pass anything through his system. The x-ray showed considerable gas buildup which was causing his discomfort.  The problem continued and on Wednesday it was worse, so he was admitted to the hospital for treatment.  On Thursday, the cramping was reduced considerably, and we finally experienced some welcome, if stinky, signs of improvement.  While there were a few jokes about farts sprinkled about during the week, we spent much of the time doing some serious wishing that they would arrive.  Today there was very little cramping, however, Mo is very tired.  He has not eaten much this week, and he is once again in need of IV nutrition which was started today in the hospital.  We are able to continue the IV nutrition at home, and we are planning to go home tomorrow.  We are always much happier at home when we can manage things.  His restlessness has also reappeared, but this time I think we may have a handle on controlling it.
Unfortunately, this week has been a setback in terms of eating, PT, OT, and homework, but it is worth noting that Mo made progress in these areas during the times when he was feeling better.
Mo's bloodcounts have also dropped, an anticipated side effect of the radiation therapy, so he received his first blood transfusion on Thursday.
Not to paint a totally grim picture across the entire canvas of this week, Thursday was his final dose of the cranial-spinal phase of his radiation therapy (I will post details about the treatments soon).  The first 13 doses of radiation, of which Thursday's dose was the last, were administered to his entire head and spine.  Starting Monday, the final 18 treatments will be focussed on the area of the brain where the tumor was removed (the posterior fossa).  Because these treatments will expose a much smaller area of his body to radiation, we are expecting the short term side effects to be significantly reduced.  Look for a posting about a celebration of this milestone as soon as Mo is feeling better!

1/28/03 - Mom
   Maurice met some stormy seas after his 3rd dose of chemo on Jan 23rd. His weekly chemo tends to cause abdominal pain, which has been particularly intense since Jan 25th. After a day's evaluation for this problem at the UW on Jan 27th, it has been determined that he needs to rest and wait for the pain to go away. Thankfully his pain medicine helps, although his appetite is again low. We are hopeful that we can come up with a regimen of medicines that can help him thru his many future chemo doses.
   Maurice has also been losing his hair. Becky found a simple, perfect pattern to make a fleece beret. She swiftly went to work, and in 1 hour appeared with a stunning, cozy hat, perfect for our arctic climate. That is just one example of Becky's awesome teamwork!

1/24/03 - Dad
    Today was the final day of radiation for the week.  We are looking forward to the weekend break.  Mo woke up tired and with a few aches and pains.  Nonetheless he ate a decent breakfast and we read about Woodrow Wilson as he rested before going to the hospital.
    There is no way to describe the process of accepting this situation - I'm sure it is different for each of us.  Occasionally reality tosses some paint onto the canvas of the future, giving us the opportunity to prepare for things to come.  Today, as Mo was doing his homework, he noticed that his hair kept falling onto the pages of his study guide.  We had talked about and prepared for this, but, as Lao Tzu said "The Universe which can be talked about is not the Universe".  And so it is with all of our plans.  We don't know what things are like until they happen.
   "My hair is falling out." He said.  
   "Yes it is." I replied.
   "Becky better hurry up and make me that felt beret..."
   We stopped studying and washed his hair, after which he took a long peaceful nap.  He had been planning this nap so that he would be able to watch TV to see if his grandfather, who attended tonight's taping of The Tonight Show to celebrate his 70th birthday, would be captured on camera.  Grandpa never appeared next to Jay, but thankfully Mo fell peacefully asleep after the monologue.

1/23/03 - Dad

Lying down on the table for radiation.  The blue pads support chin and forehead.  Underneath is a Styrofoam bead mold which has been vacuum formed to fit his body.
From the physical point of view, today was another good day.  Mo was a bit slower getting going in the morning, so he went to the hospital without breakfast.  He had chemo at 9:00 and radiation at 12:15.
It is my intention not to publish all the details of Mo's situation, but I would be remiss to paint a rosy picture.  Mo has demonstrated exceptional strength in dealing with this situation, but today, for the first time, he expressed his sadness at having this happen to him.  It was a difficult moment for Mo and his parents, but the sadness passed after awhile, as it must for each of us.
After the chemo, the IV tube (not the port), which had been in his chest since last week, was removed.  Good riddance to that annoyance!  Radiation was completed in record time, and we had a nice afternoon of shopping and homework.
With Mo's appetite back to a level which provides enough Calories and fluids (albeit with a lot of junk food), this week's victory has been the avoidance of more invasive measures to insure his nutrition.  However, the landscape of battling cancer is amorphous.  Rather than having each day be similar to the previous day, there are many days in which things appear unexpectedly out of nowhere.  We have much less control over events than we are used to.  Each new challenge requires a new strategy, and we are fortunate to have great doctors and friends to help figure things out.  Many people and the cancer literature encourage us to take each day one at a time, and we've learned that this is the best thing to do.
The nights this week have been rough.  The radiation causes extreme tiredness and one of the side effects of chemotherapy, neuropathy, causes the nerves to be irritated.  A few hours after radiation, Mo becomes very tired and unfortunately, when he goes to bed, the neuropathy makes him restless.  This has caused several nights of discomfort, some of it quite intense, but late tonight one of the medications enabled him to sleep soundly for the last half of the night.

1/22/03 - Dad
     Good health continued to prevail today, though the nights are still quite restless from the chemotherapy's effects on his nervous system (which seem to emerge in the evening).
     Today there was no use of a wheelchair, and our big accomplishment was a stop at school for an hour and a half after today's radiation treatment.  Mo and his classmates were happy to see each other, and Mo presented 2 of his papers to the class.  One was a diary of Jean Nicolet's journey from Quebec to Green Bay, Wisconsin in 1634-5, and the other was a review of a newspaper article about President Bush rallying troops to invade Iraq.  This stirred up some interesting discussion among his 4th grade classmates.  One of Mo's teachers, Ms. Stimac, generously spent some time helping him catch up with the current math and science lessons.  After class, Mo was hungry and chose to have a piece of Rocky's cheese pizza for lunch, his first in quite awhile.  Mo's sister Becky shared in the spoils, scoring a slice of cheese pizza - a rare treat for a middle-of-the-afternoon snack.
     One of the side effects of radiation is tiredness, and it appears to accumulate with successive treatments.  By 6:30 he was very tired, and then the restlessness kicked in, making it difficult to fall asleep.

1/21/03 - Dad
     After a stormy weekend of discomfort and side effects, today brought clear skies and sunshine.  Mo woke up hungry, asking for a gardenburger for breakfast! He finally settled on a helping of snack mix and a cup of sunny delight. His walking was the best it has been since surgery.  After breakfast he was in a very good mood, walking around the house, playing with the dog, and since there was no longer an excuse, doing a bit of homework.  In his weakened state, he had been using a wheelchair most of the time for the last couple of weeks, and today we only used one to get around the hospital - and even that was more from habit than necessity.  In typical Mo fashion, when the radiation therapy technician asked how his weekend had been, Mo simply replied "Good".
     When we arrived home (the radiation only takes 20-30 minutes now that everyone knows the drill), Mo was anxious to test all of the batteries in the drawer with our new battery tester.  He separated the good from the bad from those that needed to be recharged, then put all the good ones in a bag and labeled them.  Later, while playing in his room, he figured out where his long lost GI Joe was.  It was stuffed inside a K'nex box on the top shelf of his closet (out of his reach).  He has been looking for it since our trip to Vancouver in early November, and suddenly he got a hunch that it was in that box...
     We need to ask the doctor if increased organizational skills and psychic abilities are known side effects of radiation therapy...