Wednesday, 4/7/04

Just a quick note to let everyone know that Mo did return from the hospital last Tuesday (3/30).  Wednesday and Thursday weren't the greatest, but on Friday he was feeling great, and has continued to feel great since then.  He is definitely feeling the best he has since coming home from BMT.  We have switched to a new feeding formula, which is working better so far, and his strength is noticeably improved.  Anne thinks that he may have had a low grade blood infection for awhile, causing some of the low energy days we've seen in recent weeks.  Lets hope those days are behind us.
He is also getting out a bit and enjoying the Spring weather.  On Monday we went to Grandma and Grandpa Eglash's in Milwaukee for a Passover Seder, and yesterday we walked about a block (with walker) to mail a DVD back to Netflix.  It was the wrong DVD, so Mo was anxious to get it back in the mail asap. Today he basked in the sun while the rest of us cleaned up the yard a bit.  He even drank a few ounces of pink lemonade (to the tune of a $5 from mom).
Gotta start somewhere...


Monday, 3/29/04 - Day 136

Saturday night.  I was finishing up this website entry when:
We had just put Mo to bed in mom and dad's bed, which he requests occassionally.  I went in to see what was up.  Mo appeared restless - an unusual event as we have had the restlessness under control for several weeks.  I gave him some more medicine and helped get him comfortable and then sat down to a late night game of backgammon with Becky, but Sunday morning arrived before the first throw of the dice.
It wasn't restlessness that had caused his sleeping difficulties, it was a fever.  In his immuno-compromised condition, fevers are not to be managed at home, so at midnight we knocked on the door of our friends on the pediatric wing of the hospital.  After 2 1/2 months without an admission to the hospital, Mo was called up for active duty.  At the end of a sleepy, feverish Sunday, we learned that Mo has a nasty bacterial infection in his blood.  On Sunday, with regular doses of Tylenol holding the enemy at bay the invading army was identified and the appropriate weapons of mass destruction deployed.  By Monday afternoon he was playing Scrabble with his mom and he should be able to go home on Tuesday.
And now, back to our irregularly scheduled, if a bit overdue, web entry:

Well it has been quite an eventful period since our last entry, as I'm sure it has been for many of you.  Mo continues to make staccato progress in his various challenges: eating, physical therapy, sleeping, endurance, hearing, schoolwork, cure.  Some days he accomplishes a lot, other days he is tired.  Thankfully, the overall direction is forward and Mo's attitude remains great.
For 2 of the last few weeks, Mo was on break from his 2 chemo medications, and he definitely felt better.  These meds were then were restarted on Thursday 3/25.  At the end of the last dose and again when we restarted it recently, we discovered that one of the meds wreaks a bit of havoc with his emotions, so we have reduced the dose, which seems to help.  The meds also cause dry, itchy skin, a bit of (unnoticeable) hair loss, decreased appetite, a bit more difficulty keeping food down - the usual things...

Probably the most newsworthy event of recent history was last week's MRI scan.  The MRI involves several types of scans.  At each MRI, Mo always gets a regular scan and a scan in which contrast dye is injected.  For last week's MRI, Dr. Puccetti also ordered a spectroscopic scan.  Where the regular and contrast scans can identify physical structures in the tissue, the spectroscopic scan can identify the products of metabolic activity (the substances secreted by cells).  Cancer cells secrete different products than normal cells.
An MRI scan requires a patient to remain perfectly still.  Mo's scans take 45 - 60 minutes, and he is an MRI champ.  However, Monday's (3/15) late afternoon scan (5:30) produced an unexpected bout of restlessness.  We've had great success controlling Mo's evening restlessness (see previous entries), but we were not prepared for it to be caused by lying down for an MRI in the late afternoon, so we had to scuttle the mission before all of the scans were completed.
The MRI was rescheduled for 12:30 on Thursday and was completed with the usual perfection.  The very good news is that, after reviewing the tumor bed (the area where the tumors were removed) with a fine tooth comb and comparing it to previous scans, Dr. Puccetti and the radiologist concluded that there are no changes in that area.  The less than good news is that the MRI shows a tiny abnormality in a different area in the cerebellum.  Based on the contrast and spectroscopic scans, it does not appear to be a recurrence, and the docs are not alarmed.  They have certainly seen things like this before.  It could be many things, including tissue changes resulting from last year's radiation treatments.  The scan will be repeated in a couple of months.
Such are the weights we must put in our packs as we continue to trudge toward a cure.

Naps and emeses continue to be infrequent events.  Try as we might to detect patterns and causes, the bottom line is that they are just a part of the complex mix of therapies, meds and nutrition that compose Mo's present life.

Through the internet we have met many parents on a similar journey.  That is to say they have a child with a brain tumor (BT).  The situations vary greatly, and each type of tumor is really a different beast.  The terrain is different in each nightmare, though we share many common challenges.  Many of the families have been off successful treatments for years, though the plethora of side-effects from successful (if toxic) BT treatments is now becoming evident in their lives.  Other families have crossed that most ugly of bridges out of the Land of Cancer Treatment - everyone feels their tragic losses.  Most people on the listserve are, like us, still between the 2 extremes. BT purgatory.

No real progress to report on the appetite front.  We seemed to have maxed out on the amount of enteral (tube-based) food he is able to tolerate.  It is just enough to supply his daily nutritional, caloric and liquid requirements.  On days when he can't tolerate enough of the food, we supplement with IV fluids to prevent dehydration.
Joe, Mo's new physical therapist, has been pushing him hard with creative exercises - mostly targeted at restoring his strength and balance so he can walk unassisted.  Mo is showing much progress during therapy, I wouldn't be too surprised if he starts walking on his own soon.  At the Glenn Stephens Fun Fair on 3/13, Mo walked around for over an hour and a half with his walker (now if we could just find that kind of motivation everyday).

Still homebound, Mo's typical day includes 2 hours of tutoring, an hour of physical therapy (m,w,f), and then, depending on his energy level, additional study or an outing.  On a couple of days his classmates have stopped by for a game of scrabble during the last hour of the school day, which was a treat.  Despite his official status of being quarantined in BMT prison, he did attend school for an hour or so on Tuesday (3/23).
Echoes of "Maurice is here!" preceded him as he proceeded through the halls to class, and he received many warm greetings from his classmates when he entered the classroom.  We also had our first opportunity to use his new hearing aides (we returned the first pair and switched audiologists) and the FM system in the classroom, and it worked great. With this system, his teachers wear a microphone which broadcasts directly into his hearing aides.  He has 3 options available through his hearing aides: FM only, hearing aides only, and a mix of both.  Imagine being able to turn off the teacher's voice...

The current terrain has levelled off, so I think it is time to stop counting the days since the BMT and let it blend into the past.  Daily life is shaped by the present challenges which are the product of all the treatments we've sought, past and present.. After 15 months of trekking around this landscape, hundreds of correspondences with doctors, researchers, and other PBT (pediatric brain tumor) parents, I have developed a new image of the situation. We are walking along the edge of a huge canyon.  On the other side is a cure.  We are walking in the direction in which the canyon looks narrowest, but we can't see much of the path in front of us.  As long as the landscape doesn't become more hostile, our lives become more "normal".  However, once one finds oneself on this side of the canyon, one can never cross back.  Sometimes the canyon beside the trail becomes very narrow for a long time.  Other times the terrain becomes rocky or a rickety ugly old bridge must be crossed, as we have seen.

Thanks for visiting

Childhood cancers are up 20% in the last 25 or so years.  During this period of time we have also been inundating ourselves with chemicals.  Pollution is chemicals, cleaning products are chemicals, cosmetics are chemicals, food additives are chemicals, pesticides are chemicals.  Plastics are amazing chemicals, the production of which creates a vast amount of pollution, yet we use them as though they were the most environmentally friendly product since the the stick.  It is well known that biology does not mix well with many man-made chemicals.
Please look around and think about it.


Sunday, 2/29/04 - Day 107

As always, more stuff has happened this week, but I guess I'll start with the big news: Mo's blood count remains low and his doc recommends that we continue precautions against visiting crowded places like school.  Specifically, we are looking at the count of his CD4 cells.  I'm sure we all learned this in basic hematology, but here is a quick review:

Our blood is made up of two components: liquid and solid. The liquid part of the blood is called plasma. The solid part is made up of cells.  There are essentially three types of cells in the blood:

  1. Red blood cells - bring oxygen to our tissues.
  2. Platelets - help the blood clot, the stop bleeding.
  3. White blood cells (WBC) or Leukocytes- identify, attack, and destroy infection and cancerous cells. The white blood cell system is very complex.  T-cells are a type of WBC which regulate immune responses.  CD4 cells are a type of T-cell (they are also called helper T-cells) that co-ordinate the immune system's response to certain micro-organisms such as viruses.

CD4 cells taken with a Bio-Ferrograph 2100, a phenomenal magnetic imaging microscope.
Image stolen from the manufacturer.

The CD4 cell count is the number of CD4 cells in each cubic millimetre of blood.  A normal count can vary but is usually between 500 and 1500 cells/mm3.  Mo's CD4 count is 21.  Dr. DeSantes would like his count to be about 200 in order to lift precautions.  He assures us that Mo's count is not unusual at this point for a child who has had high dose chemotherapy, but he also noted that Mo's counts might further be suppressed by the oral chemotherapy medicine he is currently taking (which will continue for about a year).  Despite my previous reporting (and understanding and expectations), it is not uncommon for the CD4 count to take 6 months to recover.  Dr. DeSantes also emphasized that while his immune system is compromised, it is not a dire situation.  Perhaps as the seasonal epidemics like flu, pertusis, etc. dissipate, Mo will pay a few visits to the classroom.
On the sunnier side of life is the weather.  This weekend it was almost warm enough to open windows.  Grandma and Grandpa Eglash visited on Saturday and Mo took his walker for a spin for a couple of circuits around the driveway.  I saw the first robin of the year in the backyard.  This was obviously not a native Wisconsinite as that worm eater is going to be mighty hungry in a week or 2 when the ground refreezes and is covered with a foot of snow.  Today, while visiting with the Epsteins, Mo took some careful shots at the basketball hoop and gently participated in a snowball fight with his dad, sister, and Oliver Epstein.  What a pleasure - last year there were no snowball fights.
We spent a good part of the week researching and playing with Hearing Assistive Devices. After discovering our great fortune in the FM system, I learned that the audiology group from whom we acquired Mo's hearing aides has no expertise with this technology.  With the help of the audiologist from the school district, the web, and 2 other audiologists in town, I think we have figured out what equipment will be the most effective in helping Mo hear in the various venues we encounter as we go through life.  It's all about noise reduction and good amplification. We will probably end up returning the hearing aides we have and switching Mo's care to an audiologist who is familiar with FM systems.  I think I now have some insight into why many people end up not using their hearing aides.   I have to thank Connie Nadler, an audiologist with the Madison Schools, for being so proactive in helping me figure this out.

Mo in front of our new $120,000.00 Hummer H1.
Actually, it was a fun outing to test drive this odd combination of a military vehicle/luxury sedan (we drove an H2 - half the price).  They're probably useful in the military, but I think we've learned enough about the cost of not taking care of our habitat.
In the general health arena, the picture has degraded a little bit.  Thankfully, the restlessness has not returned at all, which is great.  Mo is still not eating a thing, which is not great.  He has been getting to sleep more easily, which is great.  But he has had lower energy, has been getting tired more frequently in the afternoon and has been experiencing a sense of stomach fullness more frequently, which are not great.  It is possible that the fatigue and fullness are due to the chemotherapy, which he has been taking for six weeks now.  On Thursday, he will begin a two-week break from chemo.  The cycles are six weeks on, two weeks off, and at the same time a second drug is being cycled at two weeks on, two weeks off.  As mentioned, this will continue for about a year.  We were told that this chemo would have milder side-effects than the heavy duty stuff at the hospital, but milder is not to be confused with non-existant.  With each new treatment, I want to think that we will get away scott free - you'd think I'd have learned by now - but I guess its good that hope continues to spring.


Thursday, 2/19/04 - Day 97

Just a quick update on what looks like great news this week (if you review this journal, you might think that I'd have learned an important lesson about reporting things too soon).  First of all, Mo took his first unassisted walk around the scenic living room-kitchen-loop earlier in the week - an impressive, difficult, tiring accomplishment.  Today we received an even bigger, surprise: the audiologist from the school system stopped by to evaluate Mo's hearing and she brought a device which is used in the classroom to broadcast the teacher's voice directly into his hearing aides (called an FM system).

 The system consists of a microphone pinned on the speaker and 2 receivers, one for each hearing aide.  As we tried it out, we discovered that Mo can hear much much better using this system.  We were able to talk to Mo using a normal tone of voice - even from rooms other than the one Mo is in!  Its not perfect, but after 3 months of speaking slowly and loudly, and still not being understood much of the time, this is a tremendous relief!  We will be testing the system out for a week, so I'll post an update after we get a chance to put it through its paces..
On the flip side, Mo appears to be getting sick.  He has been much more tired the last few days and today he was unable to keep his food down (for the first time in quite awhile).  Restlessness is still under control, but falling asleep still takes awhile, which may contributing to the current tiredness.  Hopefully this will all blow over soon...  Wednesday is his immune system test, so think positive thoughts - we want lots of T-cells.


Thursday, 2/12/04 - Day 90

The most exciting event of recent history was of course the wedding of cousin David and new-cousin Adina last Sunday. They honored Mo with the special responsibility of ringbearer, and he had been looking forward to it since Robert (David's brother) and Pam's wedding, which was just before our trip to Memphis last September.  So many miles ago.  When the big day finally arrived (2/8), Mo donned a tuxedo and made a first-class special delivery of the rings, standing up straight as he walked down the aisle (with his walker), just as his physical therapists and dad had reminded him endlessly to do.  He received a heartwarming applause after delivering the rings to cousin Robert, David's best man and best brother.  I've never been one to cry at weddings (in fact, I've never cried at a wedding, though I can think of 2 which would make me cry), but that was difficult.

Monday, the day after the wedding, also brought good news.  It was clear from the moment Mo popped out of bed that he was noticeably stronger.  Since adding the G-tube to his sticking-out-from under-the-shirt tube collection (now up to 3), Mo has been getting more Calories (still eating nothing), and he has shown increased strength and endurance when doing PT.  As we all know, a Calorie is the amount of heat required to raise the temperature of 1 liter of water 1 degree Celsius, so more Calories mean more energy and it shows.  He has walked downstairs and ridden the exercise bike several times, and has started practicing his karate kicks while holding onto the kitchen counter.  The PT team from the UW Hospital is very creative and they have devised a number of other enjoyable, effective exercises.  As his strolls get longer, the scenery of the living room-kitchen-loop has become a bit tedious, so we are definitely ready for a bigger popsicle stand- a place with a little more breathing room..  I think we will see our first unassisted steps in the next couple of weeks.
On the school front, Mo has been working hard and has caught up to his classmates in several areas of the 5th grade curriculum.  This accomplishment is especially impressive in light of the significant new challenge posed by his hearing loss.  Speaking of hearing aides, Mo received his fancy newfangled hearing aides on 2/5, but I am sorry to report that they are not very helpful.  After testing his hearing in Dec.after coming home from the BMT, the audiologists told us that this might happen.  Mo's hearing loss in the high frequency range appears to be beyond the reach of his hearing aides (and they tell us that chemo induced hearing loss can continue to decline for a year).  He also has cochlear damage, which severely impairs his ability to hear certain vowels and consonants, making it difficult to distinguish individual words.   Now that we have seen how little the hearing aides can help him, it has become apparent just how much of a problem this is (Anne recognized it all along).  As we look ahead at life after high dose chemotherapy, we see very rocky terrain.  Mo will be evaluated by the audiologists from the school district and we will learn about other strategies and skills that Mo can utilize to combat the challenge posed by this unfortunate development.
When I sit down to write these entries, I want them to be positive, not complaining about our latest problems, but that would not reflect the truth of the situation. Of course everyone's lives are a mixture of positive and negative events, but for us, these events have become more amplified and happen with greater frequency than they used to.  For the present, it seems that each week brings new adventures, progress toward restored health, and new challenges.  Not only do I not want to complain, but the desire to stop reporting negative news reflects my deep wish that we could get back to our pre-diagnosis lives.  While it has been quite clear for sometime that this is not going to happen, Mo's hearing loss is particularly difficult to adjust to because it permanently puts him at quite a distance from that old life.  On top of the worry about recurrence (which you may have noticed I've never mentioned before as I hate talking about it) and the many less visible challenges he is facing (many of which I feel are too personal to share in this public space), his hearing loss demands almost constant attention and it will be a thick barrier to learning and socializing.  Not to paint a totally bleak picture, I would point out that when conversing in a quiet environment with people who are sensitive to his hearing impairment, Mo can still carry on a great conversation, play games, and we can enjoy his great personality.  He can also hear people on the phone pretty well.
The other ongoing challenge is sleeping.  Thankfully, Anne has figured out a medicaton scheme which has almost eliminated the restlessness issue, but it still takes Mo an hour or 2 to fall asleep.  Anne is now attacking this problem, and with increased exercise and perhaps earlier wake-up head baths from Mabel, perhaps we can eliminate this problem as well.
Let's end with some potentially good news, shall we?  Because Mo's blood counts remain normal, his checkups will now be every 2 weeks as opposed to every week.  While this doesn't affect our lives too much, it is a good sign.  On 2/25, at his first 2-week checkup, Mo's immune system will be tested (T-cell count), and if his blood passes muster, he will be released from post-BMT quarantine (read: prison).  This means he will be able to go to school and other places where the rest of society hangs out..  If all goes well after a few 2-week checkups, they will become monthly, and there was even some mention of the Hickman Catheter being removed in a couple of months.  It is a ray of sunshine peeking through the clouds at the top of this hill.  Our packs have become heavy, but we are getting there.  It is hard to imagine.  Let's hope he's recovered and can move on with his life.  And while we're at it, lets hope for a bunch of good MRIs during the next few years and a longtime after.

With all the time and attention Mo has been getting, some people have expressed concern that we don't have enough time for Becky,  We just want to put any such concerns to rest.  She's doing great...


Friday, 1/30/04 - Day 77

Don't let 'em tell you that nobody can eat just one - Mo has managed to do that a few times during the last week.  And I do mean one potato chip (a cheesy ruffled one at that) as the total intake for an entire day.  While Mo's appetite is hinting at coming out of hibernation - a bit of ice cream here, a ritz cracker there, a bite or two from a cupcake - it wouldn't sustain a sparrow so we proceeded with having a G-tube placed last Friday (1/23).  It was a surgical procedure and he was in the hospital overnight and home on Saturday afternoon in time for Grandpa Hy's birthday party.
The G-tube is a small catheter (medical jargon for tube) which runs through his abdominal wall into his stomach .  He can use it to "eat" special formulas and take medicines.  It was quite painful for the first night and day, but the pain has mostly subsided and it is much better than having an irritating tube running down the back of his throat.  An immediate benefit is that once again he is able to swallow all his pills (and there are a lot of them right now).  It will take awhile for his body to get used to the new tube, so we have to start with slow feeding, observe how well he tolerates the food, and build up the volume of the feedings as quickly and gently as possible.  He can eat as much or as little as he wants with the G-tube in place.
With his appetite non-existant, Mo has taken in very few Calories over the course of the last week, thus his energy level has dropped substantially.  At the weekly checkup on Tuesday's, we met with a nutritionist who is assisting with the task of restoring Mo's appetite.  She pointed out that Mo's tastebuds were destroyed during the BMT, and they have probably not recovered yet.  Now we know why he always tells us that food doesn't taste good.  Also, all liquids except water seem to cause a burning sensation in the back of his throat. He will eat, we just don't know how much time will pass before he does.  He told Megan the nutritionist that he would try to eat one thing every day, which he mostly does and generally results in a 2 bite event.  Depending on the entre, leftovers go to Becky, Anne or I, Mabel, or the compost, pretty much in that order.

Eating and feeding is complicated by the addition of a new oral chemotherapy medicine which Mo takes at home. While it has relatively mild side effects, it can suppress appetite and cause nausea, and it must be taken an hour away from foods.  In addition to the new chemo med, Mo is also taking a new medicine which is classified as a 'biological response modifier".  As opposed to chemotherapy drugs, which attack cancer cells, the strategy behind this drug is to force the cancer cells to mature (one of the problems with cancer cells is that they never mature, they continue to grow endlessly, forming tumors and disrupting normal body functions).  That said, the drug has also been shown to kill medulloblastoma cells in laboratory studies.  I would emphasize that Mo currently has no measurable cancer, and it is our deepest hope that he is cured, however, we are using these medicines as a precaution to attempt to kill or force maturity on any cells which might have survived the chemo/BMT.  He will continue taking these meds for about a year.
When last we left our hero, his path was blocked by a fallen tree of nutritional support.  It has taken a few days to get back on track after the surgery for the G-tube.  On Wednesday (1/28) his energy was good and he resumed PT and walking around the house with his walker, so I'd say he has just about made it around that obstacle and is heading forward again.  Unfortunately, intermittent restlessness continues to be a problem at bedtime.  To me it appears unpredictable, but Anne has an idea as to its cause and on Thursday nite (1/29) we started a new medicine to try to combat it.  As one might imagine, pain and discomfort mark the the most intolerable experiences of this whole ordeal, so the restlessness is particularly difficult.
The insurance issues surrounding Mo's hearing aides have been resolved and he is scheduled to get them on 2/5.  His hearing is very difficult to assess - somedays it seems to improve, other days it seems to be worse.  He will be given an audiogram (hearing test) before receiving the hearing aides - it will be very interesting to see the results of that test.  As usual, he has not complained about the delay, but we are all looking forward to next Thursday afternoon and hopeful that they will be very effective.
While this entry is a glimpse of life with many challenges, it would be inaccurate to paint a negative picture of our lives. Weekdays are packed with home PT visits, tutoring, catching up w/schoolwork, with a few medical appointments punctuating the week.  Through it all good humor abounds and there are many laughs during every activity.  We are enjoying our days.  If you feel like stopping by for a chat or game of Boggle or Scattergories, give us a call.


Sunday, 1/18/04 - Day 65

A steep hill with obstacles and switchbacks. Thats where we are.  Two weeks back we had a week of progress, laughter, a shopping trip, attending one of cousin Skye's hockey games, catching up on schoolwork, regrowing eyelashes, improved strength and balance.  He also stopped using a wheelchair for getting around in the house (he uses the walker) and we discovered that, using a phone headset that includes headphones, Mo can talk on the phone.  A great week.
On Saturday night (1/11), however, a tree fell across our path.  Mo had trouble keeping down his medications and then difficulty falling asleep.  On Sunday morning Mo was still uncomfortable and unable to keep his meds down.  Under those circumstances he couldn't be cared for at home, so he was admitted to the hospital.  We were suspicious of a stomach flu, but we knew that his underlying problem with esophageal reflux was a major player in this ordeal.  For the rest of the day he was pretty uncomfortable and then he hit the hay early - fortunately without too much trouble.  On Monday he awoke feeling much better.  His docs were planning to let him go home, but another issue, one which we have been dodging for weeks, finally stormed into the room demanding resolution.  As we have noted before, the IV nutrition has caused problems with Mo's liver, and we suspected that the nutrition was also contributing to the nighttime restlessness that has been quite severe lately.  In addition to those problems, feeding via IV bypasses the digestive system, which can then render the intestinal system dysfunctional (i.e. not stimulate the appetite) because it is not being used.  The solution to these problems is to discontinue the IV feedings and use the better alternative of putting food directly into the intestinal tract (where food is supposed to go) to provide nutrition.  Because Maurice has absolutely no interest in eating, a tube is needed to deliver nutrition directly into the stomach.
There are 2 routes that the tube can travel.  One is through the nose, down the throat and into the stomach (a nasogastric, or NG tube).  The other is straight through the stomach (a Gastrostomy tube, or G tube).  Each has its advantages. The NG tube is simply pushed into place, but then the tube sticks out the nose and can be felt in the back of the throat.  The G tube avoids the discomfort of running through the nose and throat, but it requires surgery for placement and removal.  We have spoken to many doctors and parents about the relative satisfaction with each of these, and have found a broad spectrum of opinions as to which approach is favored (though most parents we spoke to prefer the G-tube).
The reason we have been dodging this issue for weeks is that Mo would get very upset when we brought up the issue of a feeding tube, - he would much rather eat his way back to health.  Unfortunately, due to the chemo, he has no appetite nor does food taste right, and adding to that the problems with the IV nutrition, it became painfully obvious that we had simply run out of alternatives.  The Peds Hem/Onc team discussed Mo's situation at their Monday morning meeting (1/13), and recommended an NG tube, which was put in place on Tuesday morning.  The procedure is short and relatively painless, but it requires that the patient swallow, and despite being very upset, Mo was brave and helpful.  We returned home on Tuesday night.  Tube feeding requires another pump with another set of bags, tubing, fluids and procedures, but we were still very glad to get home.  Another potential benefit of tube feeding is that as Mo's stomach and digestive tract start working again, it might stimualate his appetite, which remains non-existent.
The NG tube was uncomfortable for Maurice, and although he developed an immediate dislike for it, he was his usual cooperative self and tolerated it fairly well.  Since the tube runs down the back of the throat, he found it irritating, which made it difficult to swallow pills.  Tube feeding involves pouring or pumping a nutrient-rich liquid down a tube which runs directly into the stomach.  Medicines can also be ground up and infused throught the tube (though a bit of a pain to do).  In order to reacquaint Mo's digestive tract with food, we gradually increased the amount of food he received each day.  By Sunday evening he was receiving a good amount of food thru the tube each hour, but unfortunately he started feeling sick with reflux symptoms, and vomited up his food for the day along with the tube.  Poor Maurice was horrified, as the procedure of inserting another tube is repulsive.  By this time we had already consulted other parents of children with brain tumors (via the web), and the unanimous opinion was to switch to a G-tube, so we had already made the decision to pursue that option.  We spoke to the doctor on call, who agreed that the best decision for the foreseeable future is to put in a G-tube.  The G-tube will not be a picnic, but it should make it easier for Maurice to take his medicine, he will be more comfortable, and hopefully it will be easier for him to eat when he is willing and able.  We hope to meet with the surgeon on Tues, and for now we will keep him on IV fluids.  While this was a very unpleasant experience, I would point out that when I came home from grocery shopping (lucky or unlucky to have missed that nasty experience), Mo (with a sly grin) asked me if I noticed anything different.  We joked around that it wasn't longer eyelashes, longer hair, or a fresh shirt - he had already put it behind him!
So the tree obstructing our path has a few large branches and twigs which must be avoided, but really we are not backtracking, just moving sideways.


Tuesday, 1/6/04
Day 53 since transplant

Just a quick note to share some very good news:  Today was Mo's first MRI since completing the BMT and it shows no tumor!
Mo will receive an MRI every 3 months for the next 2 or 3 years, and then they will be spaced progressively further apart for several years.
He will begin some new treatments in the next week or so, we'll write about that soon.
With relief and much less anxiety,
Mitch and Anne

They call it physical therapy...


Friday, 1/2/04
Day 49 since transplant

Maurice has continued to make progress this week, especially in terms of his physical strength.  The foot pain reported in the last journal entry has not recurred, he has become more independent with standing up on his own, and he can walk around the house with a nifty 3-wheeled walker that the physical therapist let us borrow.  He has even walked up and down the stairs a couple of times - the first time he has gone downstairs since coming home - its quite a bit of work.  Maurice was diagnosed with hypothyroidism last week, and since he started his thyroid pills, he has made faster gains in strength. His mood has been very good.  We are definitely progressing up the hill of BMT recovery.
Besides the hearing issue, which is unchanged and a project in itself, the other major obstacle for Mo is his nutrition.  He has been on intravenous nutrition since mid November, but about 2 weeks ago he started looking a bit jaundiced (the whites of his eyes turned green). After some blood tests and a liver ultrasound, it was determined that Maurice has bile sludge in his liver and gallbladder, because he is not eating.  Food in the stomach stimulates gallbladder contraction, and, because the IV nutrition bypasses the digestive system, his gallbladder has been on vacation!  We would like to get Maurice off of his IV nutrition in order to get his liver back to normal.  He is taking a few different appetite enhancement medications that so far have not helped, but we know it may take until next week before they are effective.
This week we also saw the return of “restlessness”, which is hard to describe, but has been one of the most uncomfortable issues that we have had to deal with since dropping into this landscape.  Restlessness occurs at bedtime, and it could be described as an extreme, sometimes painful anxiety.  It is not anxiety based on worry, but rather it seems to originate in the nervous system.  The episodes last 1-2 hours and can be quite severe.  We have been working with a psychiatrist on this issue, and have been able to control it for most of the last year.  This time around it occured every night for about a week, with Anne working overtime to try to figure out the cause.  On New Year's Eve she seems to have solved the problem, and thankfully Mo has fallen asleep peacefully for the last couple of nights.

We had a marvelous visit with our friend Mary Brady, who left the happenin' East Coast to spend a quiet Christmas with her Wisconsin relatives.  Although Mo did not partake in the Hungarian crepes that Mary made for us, he enjoyed games, movies, and dog jokes with Mary (stories about her dog Basil were major entertainment).
We are looking forward to a new regular schedule next week, which will include 2 hours of tutoring/day (medical schedule permitting), several visits by physical therapy, and hopefully some speech therapy soon.


Sunday, 12/21/03 - Day 37 since transplant
It has been a week of ups and downs, good news and a new challenge.  It appears that the storm which began last August with recurrence and continued to rain down through BMT is finally behind us.  The sun has peeked out at least a few times each day.  Mo is getting visibly stronger and more animated (though progress is more visible when viewed weekly than daily).  We even had a few of his good old laughing spells, which warm the heart even if he won't tell us what he is laughing about.

In the wee hours of Wednesday morning we encountered a new storm.  Mo awoke with severe foot pain in the middle of the night.  We were able to alleviate the pain with meds, but the same pain reared its ugly head on both Thursday and Friday mornings.  The episodes lasted an hour or so, and necessitated the cancelling of PT on both Wednesday and Friday.  The docs are hoping that the cause of the pain is GCSF, which is the medicince which being used to build up his blood.  Mo's blood counts have been off the charts for over a week, so it is possible that the last dose of GCSF (which was also the final dose), may have stimulated so much white blood cell production in his bone marrow, that the density of the cells is causing pressure in the bones - which leads to pain.  The pain did not recur on Saturday or today, so hopefully the doctors' (and Anne's) theory is correct and we will have sunny days ahead.  On Wednesday, Mo's routine medical exam revealed that he gained weight (second week in a row), so the Calories in Mo's IV nutrition have been reduced by 25%.  Who is going to feel hungry when they are gaining weight without eating?  Hopefully this will stimulate his appetite.

On Monday we met with an audiologist and she ordered Mo some state-of-the art digital hearing aides complete with 4 programmable settings and the capability to sample and remove background noise.  Mo is looking forward to getting them in a few weeks.  On Tuesday he resumed his tutoring sessions with Corinne; as this is a step toward his normal life it helped normalize his disposition.  It was pleasant to see bubbly old Mo telling stories and joking around.  He recalled eating at the Medusa cafe in the Dells last Summer.  Medusa was one of the characters they encountered during their study of Greek mythology over the Summer and apparently he has been waiting to share this experience.  Despite low scores on his hearing tests, he is able to hear quite a bit when we people talk to him and during his tutoring sessions, so we are encouraged that the reality of his hearing will be significantly better than the indications of the test results.  We will know after he has been using the hearing aides for a few weeks.

Friday was particularly eventful. Mo received a wonderful visit from his entire class in the late morining.  We live near his school, so Ms. Stimac, Ms. Kebbekus, and student-teacher Stacy paraded the kids over to our backyard where they said hello through the window and sang some holiday songs.  They also gave him a school T-shirt and 20 beautiful jigsaw puzzles, each a unique artwork created by one of his classmates.  It was great medicine to help evaporate the morning's episode of foot pain, and Mo set to assembling the puzzles as soon as the kids left.  He finished most of them before Corinne arrived for the day's lessons.  Mo and Corrine were quite engrossed in reading Number the Stars when we received a call from the Hematology/Oncology docs requesting Mo's presence at the hospital so they could evaluate the foot-pain issue.  The fact that Friday was exactly one year (by day, not date) since Mo's diagnosis was not lost on me, but I was confident that we would return home quickly, which we did.
When we arrived home Grandma and Grandpa Eglash were here preparing for our annual Hannukah celebration.  While Mo did not eat any of Grandmas phenomenal Latkes (traditional potato pancakes), he had no trouble lighting the candles and opening presents.  Again we were treated to the pleasure of Mo's laughter as he played with the dogs (G and G brought Mabel's friend Kelly, their West Highland Terrier).  Each comfort is a victory, laughter a triumph.
Saturday was spent assembling puzzles, building part of a model battleship, starting to assemble a new lego train, taking his first few bites of food - watermelon and cantelope, taking a long nap (first one since coming home), and playing Boggle (not necessarily in that order). Again some hearty laughter emerged as the effects and the ordeal of the BMT continue to be shed like old skin.  Eating, laughing, and, dare I say it, using the bathroom - great holiday presents for his family!

Today, unbelievably enough, is the one year anniversary (by date) of Mo's first surgery. Who could possibly have guessed all that would happen?  It has shaken my lifelong fondness for the Solstice.  Mo spent the day building a lego train engine and then playing a long game of scrabble.  Late afternoon bathing, watching part of an old movie, then to bed.  A quiet day.
If you are healthy and would like to come by for a visit during the holidays, please give us a call.

A very happy and healthy holidays to everyone.


Friday, 12/12/03 - Day 28

A steep hill indeed.  Mo has been home for about a week now, and we are moving very slowly up the hill of recovery.  I wish we could carry him, but that is not possible.  The BMT really took a lot out of him.  He continues to be very weak, though today he took a few short walks around the house for the first time.  On Monday, his hearing was tested by the UW Audiology Dept. and we were once again hit with the unexpected: Mo will need hearing aides, but they may not help his hearing very much.  In addition to problems hearing most frequencies (which can be corrected with hearing aides), much of the sound that Mo hears is distorted, so he is unable to distinguish the individual words, and hearing aides won't help with that problem.  That little avalanche pushed us back to the bottom of the hill at the beginning of the week.  Of course we are not sitting on the problem.  He will be tested for hearing aides next Monday and we've contacted the hearing specialist at the school to see what strategies they can offer for dealing with the situation.  Personally, I find it hard to assess the extent of the loss.  As I help him with his schoolwork, we definitely encounter hearing problems with specific words, but he is able to understand much of what I say.  On the other hand, while he still enjoys watching TV, he is having trouble understanding the dialogue.  I need to look into closed captioning.  As with all challenges, we develop a strategy for dealing with them, so we'll start with hearing aides and go from there.
On Tuesday Mo saw Dr. Puccetti for his first post transplant exam.  His blood was tested and the numbers are great, so no transfusions for now.
The current stategy for spending days is to let Mo sleep as long as he'd like to (he sleeps 12-14 hours/day if there are no appointments to wake up for) and then develop a schedule for the day when he wakes.  This week's days have been a mixture of PT/OT, studying, and break time, sometimes punctuated by visits from teachers and friends. Over the last couple of days his energy has increased to the point where we can get a lot done.

  Mo tires by late afternoon (works 'till 5:00 - he's no slouch), and then watches some TV. Over the course of the week he continued to shed some of his moodiness in favor of his usual sun shiny self - the trick being to figure out how snap him out of somberness.  Visits help accomplish this task, but sometimes a very direct admonishment is necessary.  As has been the case throughout this ordeal, it is difficult to notice progress when we are constantly observing him - the old "watching the toaster" syndrome.
  Thanks to Aunt Cindy for coming up from Orlando to help out this last week.  Having an extra pair of hands and feet made the transition from hospital to home a lot easier.


Sunday, 12/07/03 - Day 23

Maurice said good-bye to his doctors and the great nurses at the UW Children's hospital and returned home in the late afternoon on Thursday.
The first few days at home have required some adjustment, with things improving noticeably each day.  On Friday he was pretty withdrawn and watched a lot of TV, but by yesterday he was up to several games of Boggle, and today his mood is much better.

Back to the healing tongue of Mabel the wonder dog
Mo's hearing loss continues to be quite severe.  He has an amplifier and a nice set of headphones, which helps to some degree.  We can also plug his headphones directly into our entertainment unit so he can hear TV and movies.  He will have a hearing test tomorrow morning - we are expecting that he will need a hearing aide in each ear.  He continues to get IV nutrition and will continue to do so until his appetite picks up, which will probably take awhile.  The IV nutrtion is a large bag of milky white fluid which runs through an IV pump for 16 hrs./day.  The pump and bag fit in a backpack, so he is mobile while it is running.  He will also receive PT and OT at home for 1 month - he has quite a bit of work to do to get back on his feet.  Academic tutoring will also resume soon, hopefully this week.
 Using the bathroom, bathing, eating and drinking, taking medicines, and the still-dreaded changes (now only every 3 days) of the dressing which covers his IV catheter each present a challenge.  Understandably, the combination of all of these tasks and challenges lead to many frustrations and irritations.
So as we leave the transplant behind we've found ourselves at the bottom of a steep hill.  As with each turn of events, we put one foot in front of the other and head forward.  Hopefully the path will level out soon.  Patience and hope are key.
Thanks once again to everyone who has brought us food and other forms of life support.  Special thanks to Grandma Shari and Grandma Sheila for spending so much time helping out in so many ways.  You definitely made the BMT much easier to navigate.
At this point the journal entries will become more sparse, so I will resume sending out a notification when an update is added.  If you're not on the list, but would like to be notified, let me know.


Wednesday, 12/03/03 - Day 19

Last nite saw the return of some pretty severe restlessness, which Anne thinks it is a response to the IV nutrition, so we are going to try to get it infused during the day.  We have had this problem in the past, and it seems that for some reason, getting the IV nutrition during the night causes Mo to become restless.  The trick is to give it to him slowly enough to prevent restlessness, but fast enough so that he doesn't have to be getting an IV all day.
THE VERY GOOD NEWS IS THAT MO IS GOING HOME TOMORROW!  This has brightened everyone's disposition and raises a very important question: can we allow Mabel to lick his head?  Stay tuned for the answer...


Tuesday, 12/02/03 - Day 18

Things have been up and down over the last few days.  There are many things happening, including restarting rehab and major changes to his medications - the elimination of some drugs and the conversion of others from IV to oral so they can be taken at home.  

The WBC, hemoglobin and plateletes counts move up and down on a daily basis, but the docs feel they are still very good and want to continue to observe how well his bone marrow is working on its own (ie no transfusions or blood stimulating meds).  As the narcotics are reduced, I think Mo is feeling more aches and pains and also the gravity of the situation.  He is clearly ready to get out of isolation.  This makes him more irritable, and emotional.  On Sunday, he had a particularly low day, with symptoms indicating that we might be withdrawing him too quickly from some of the meds.  The med strategy was adjusted and on Monday he had a great day, including PT, OT, school and a walk down the hall.  Today was a mediocre day, with less energy for activities, more pain and sadness.  Remember that just 3 weeks ago he had surgery which involved 2 incisions to replace his catheter.  He has been pretty doped up since then, but as he gets less pain medication, his chest is proving to be a source of pain - it still has some healing to do.
Plans remain to go home on Friday, and WE ARE LOOKING FORWARD TO IT!

In-room schooling with teacher Marianne


Saturday, 11/29/03 - Day 15

We are nearing the edge of the BMT region of Cancer Treatment Land.  Fortunately, the terrain is relatively easy going, so each day we are covering aa decent stretch of ground.  From here we go to the Post Transplant Region.  As always, we cannot see too far ahead, but there are no major storms in sight.  It looks like the next couple of months will be a slow, hopefully gentle, uphill walk.
Mo continues to do well.  He spends a lot of time sleeping, which is probably because his body is so focussed on healing.  His white blood cell (WBC) counts have reached the normal range, with some WBC components being much higher than normal due to GCSF, a medicine which stimulates blood growth (which will now be discontinued).  Today his red blood cells (hemoglobin) also increased, another good sign, as the ability for Mo to produce his own hemoglobin and platelets follows his ability to produce WBC.  We expect that Mo will continue to require transfusions of red cells and platelets, even after he goes home to get his life back on course.  As his immunity gets stronger and his body healthier, his doctors are gradually eliminating the narcotics and some of the antibiotics and his body is shedding his chemo skin - an itchy process over we which we are still losing some sleep.  But his new skin looks beautiful and rash-free. Soon the days (and nites) of greasing him up like a ..... watermelon..... will be over.  Its amazing how he can raise his legs and arms during this activity - even in his sleep.  Mo observed that he is like a snake; I will be happy to leave behind as much of this as possible.  Mouth sores are also visibly on the retreat.  Hearing is hard to assess, though it is still much better than it was last week.  Strength remains an issue we will start working on next week.
We had a Thanksgiving and Birthdays Bash (mom's bday is one day before grandma Shari's, so we celebrated both) at the hospital on Thursday.  Mo made his first appearance outside of his room.  He slept through Thanksgiving dinner, but ate a few bites of much longed-for fruit at the birthday celebration.  He kept the fruit down without a problem.  One grape, a half section of a mini-orange, and 2 small bites of apple.  He also (finally) enjoyed some pineapple juice and soda over the last few days.

  Today the UW Children's Hospital held "Kids with Courage III", a day of seminars and celebrations for children and families who've been affected by childhood cancer, and a fundraiser for the hospital.  It is a grand event held every few years at the Monona Terrace Convention Center.  Our family registered to attend, but we were unable to go because of the late start of Mo's BMT.
Cindy Crawford, who lost her 4 year old brother to Leukemia when she was 10, is a regular participant and special guest at Kid's with Courage.  On Friday, while visiting the kids in the hospital, Cindy stopped in for a chat with Maurice.  In all the time we've spent at the hospital over the last 11 months, I've never seen the pediatrics floor so crowded.  Even our friends Patty and Sarah, who had stopped in for a visit and a few hands of UNO, hung out to see her when she arrived, and I must say, she is quite a sight.
If you have been reading Mo's guestbook, you may have noticed that Becky had surgery on her toe last Monday.  This was a corrective surgery which has been planned for about a year, and Becky did just fine, so no worries.
 We think that Becky developed a curled toe while doing gymnastics on Anne's ribcage before she was born.  This is her second surgery to try to correct it.
In the time between the 2 surgeries, her surgeon has been experimenting with bionic fittings, and since he is still working out the bugs, he offered Becky his first invention for free.  It's a toe-loaded pin shooter, and it even has a magazine which holds about a hundred pins.  Becky has been practicing, and she can pretty consistently hit a 2" bullseye taped on the back of her bedroom door.
Why would anyone want such a thing you might ask?  The reason is simple: its to help protect her from some of these young rascals who come calling at the door...

Becky's Toe: Loaded and ready to go...


Tuesday, 11/25/03 - Day 11

For the third night in a row, Mo slept soundly. .This morning's blood analysis revealed that Mo's white blood cells continue to blossom.  They jumped from 0.7 yesterday to 1.7 today (normal is between 4 and 10.5).  This means he can leave the room for a few hours a day, as long as he wears a mask and stays inside this wing of the pediatric ward.  If he is up to it, he can attend the childrens oncology group tomorrow.  This is a weekly meeting of children with cancer which is facilitated by Joel Wish and Stephanie Farrell, who are social workers at the UWCH.  Mo enjoys these meetings, which he has attended frequently during the last 11 months.  He is one of the few, if not the only, regular, since most of the other kids treated here come from out of town, so they only attend when they are in the hospital and feeling up to it.  He will also be able to join our family for a modest Thanksgiving meal that we will have in the hospital. We definitely have a lot to be thankful for.
Since his blood counts continue to rise, there have been whispers of going home late next week.  Not to be outdone by his white blood cells, Mo's hearing showed a dramatic improvement today.  While we still have to speak loud, he didn't use the hearing aide at all!  As mentioned previously, some of the chemotherapy drugs are known to cause hearing loss.  His docs have never seen a case this severe, and they told us all along that his hearing might partially or totally recover.  Cautiously, I would say this is beyond a relief...
Mo was awake for about 6 hours today, during which he read for about an hour and a half (comic books) and also had a short current events lesson with the hospital teacher.  His rash has disappeared in many places, though it has worstened in a few others.  In most places, his skin looks great, though it is very dry and we have to use moisturizer on it frequently; it is very itchy when the moisturizer stops working.  Use of the bedside commode continues to be an event several times/day.  His mucocitis is still irritating, but he did drink some water without experiencing any pain or coughing.  Hopefully this will be better tomorrow.  He continues to ask for fruit everyday, soon his wishes will be fulfilled!!!


Mo's Blood Counts Rise for Third Straight Day

BMT Press - 11/24/03

MADISON, WI----- Maurice Rosefelt's white blood cell count rose dramatically to 0.7 today, marking the third straight day of gains.  In an unexpected development on Saturday, Rosefelt's white cell's were measured at 0.1, before that, they had been less than 0.1, which is considered to be 0.  Sunday saw a doubling of the count, to 0.2.  Rosefelt is on Day 10 of an autologous bone marrow transplant (self donor) which is part of his treatment for brain cancer.
During the chemotherapy part of a bone marrow transplant, all of the body's white blood cells are destroyed, so bone marrow must be replaced after the chemotherapy medicines have been excreted by the body.  In Rosefelt's case, bone marrow and stem cells were harvested before the transplant and were replaced 72 hours after the last dose of chemotherapy.

Because Rosefelt's bone marrow harvests were sub-optimal, his medical team did not expect his white cells to appear for another week or two. However, after three straight day of gains, there is general agreement that engraftment (bone marrow returning to the bones and producing white blood cells) has occurred much earlier than expected.
Rosefelt's bone marrow, the producers of the white blood cells, were unavailable for comment.
   "Leave us alone, we're busy"
was the message on their answering machine.
The normal range for a white blood cell count is 4.0 - 10.5.  The number represents billions-of cells-per-liter-of blood, so a count of 4 would be 4 billion cells per liter of blood.  There are several different types of white blood cells, the white blood cell count is a total of all of them.


Sunday, 11/23/03 - Day 9

With some caution, we could say that Mo is showing signs of improvement today.  Here's what we've observed:

Did not spike a fever
Had less itching
Required less pain medication
Had overall higher energy, was awake more
Rashes in various parts of his body are looking better
No nausea/vomiting
Did not require a blood transfusion, which we were expecting would be necessary
Stronger when getting out of bed


Saturday, 11/22/03 - Day 8

"I wish chemo was as easy as taking a lime and a coconut and drinking it all up."
So said Mo to his teacher Ms. Stimac while they were visiting this afternoon.
Day 7 went pretty much like Day 6.  Some things improved a bit, others worsened a little, but there were no severe episodes.  Drs. DeSantes and Matloub assure us he is doing well under the circumstances, and there seems to be a general consensus, that, barring any infections, things will be like this for several more days or a week.  It appears that Maurice's pain is pretty well controlled with the narcotic (dilaudid) drip, but nothing but a truckload of fruit would satisfy his craving for something sweet and juicy.  Unfortunately his mouth sores and difficulty swallowing prevent him from digging in, but he will be smothered with the finest fruit when he heals.
Today, Day 8, is pretty much like days 6 and 7.  This is actually good, as we are hoping that things won't worsen, and that he will start inching up towards healing by the middle to end of next week. The Badger football team came back to see him yesterday.  Maurice was particularly interested to know if they travel in coach buses...he recommended to the team that they get a custom bus, which they all thought was a novel and great idea.  If they get one, they better give him a ride in it!
Some people have emailed and asked how Becky is doing, often with a sense of worry that she may be the forgotten child.  Rest assured, she is coddled and overseen a bit too much according to none other that Becky herself.  She wishes for more time to she has not only mom and dad, but also a grandma badgering her about her homework. We all treasure our time with her, so we all take turns frequenting the book/music stores and cafes with her.  Becky will go in for toe surgery on Monday Nov 24th at Meriter, something we have been planning for almost 1 year.  She is looking forward to having a straight, well-behaving toe, and she will have 2 grandmas to boss around, at her beck and call.


Thursday, 11/20/03 - Day 6

Today was a rollercoaster.  Mo got a great night's sleep, without a single incident and woke up in reasonably good spirits around 10 AM.  His weight was down a bit from yesterday - which means his body has lost some water, which is good.  As the morning wore on however, he encounterd a few hours of discomfort.  A new rash appeared today, which the docs think may be cause by one of the anti-biotics.  Also, his skin has become very dry, so between these two factors, he had quite a bit of itching.

   His bath was particularly miserable, as we discovered more areas where his skin is breaking down (which are small patches of raw skin). Once again I think the pain meds may have partially worn off at the time we gave him the bath, causing more discomfort than necessary.  After his bath we watched "Godzilla" (the remake), and then had a nice visit with our friends Anita and Alexander.  Mo came out the winner of 3 games of Uno.  It was a pleasure to watch and a great end to the day.


Wednesday, 11/19/03 - Day 5

Today we encountered rougher waters.  Mo was up frequently in the night to use the bedside commode, but then slept until 2 PM. There are about a dozen bags and medicines hanging from his IV pole, and the nurses are constantly switching the lines on and off since only so many meds can run simultaneously and some meds should not be mixed and so cannot be run at the same time.  At one point his pain medicine had been off for awhile and when he took a drink Anne found out just how much he really needs it.  That will not happen again...
He slept most of the afternoon, waking up for 10 minutes at time to drink or talk or take care of other business.  This evening he was up for a couple of hours, braving a bed bath, a dreaded dressing change (the dressing which covers his catheter), and then watching "Mr. Nice Guy" (Jackie Chan) before going back to bed.  The good news is he no longer has to have an adhesive bandage over his catheter, so dressing changes will be much less painful (though they will now be daily).  He is amazingly cooperative with every procedure which makes this ordeal significantly easier for us.  At this point we're not too fond of causing any discomfort.
Thankfully, he is not in a lot of pain.  His gastrointestinal tract is quite raw, so he is very hoarse, but the pain meds keep him comfortable.  He has had a mild fever for the last few days, but, in this reality, a mild fever is normal.
A major concern is that he continues to retain a lot of water.  His i/o is watched carefully, but each day he is taking in more fluids than he is getting rid of ("voiding").  He has gained several pounds and we can see the water retention in his belly and thighs.  One of the side effects of the chemo is that water can leak out of his bloodstream and into the other tissues and spaces of the body ("capillary leak" or "third spacing").  The doctors are working to control this as it can lead to problems. At this point the doctors remain less worried about it than his parents.  A side effect of retaining a lot of water has been breakdown of his skin, especially in places where it is creased, such as the groin and armpit.  We cover these areas with a thick cream and he has not complained of too much discomfort from the sores.
As may or may not be clear from the previous entries, he has been bedridden for most of last 2 weeks.  It takes quite an effort each time we need to get him out of bed. This is due to weakness and also one of the medicines can cause bone pain.
 He continues to be given a lot of anti-biotics; and so far his blood tests have shown no infections.  It is impossible to predict if, barring any infections, he has bottomed out.  Dr. DeSantes predicted that the mucocitis would start to get better after about a week, so any of these days could be the worst one.  In the meantime, we continue to watch like hawks.
This morning we moved into a room across the hall.  It is a bit larger, the layout is much better, and the natural lighting is great as direct sunlight bounces in through the window.  Hopefully tomorrow will be a sunny day.


Tuesday, 11/18/03 - Day 4

"I would like to stick a straw into a piece of fruit and drink all the juice."
"What kind of juice would you like?"
"Well, I think orange juice would be hard on your mouth and throat, they are so sore.  Don't you think that might hurt?"
"Yeah, I guess."
"Would you like some grape juice?"
"But grapes are so small, I don't think there would be a lot o juice if I stuck a straw in one."
"That's why they squeeze a bunch of them into one container..."
"Oh, right."
Such is the thinking of a little boy under the influence of narcotics and about a million other drugs.
Day 3 and Day 4 have been relatively smooth sailing.  We've made some changes to Mo's medications and the itching has decreased and he had no nausea on Day 4.  He has been thirsty, and has been able to hold down some water and some grape juice, he even ate a little bit of fruit today!  Seeing him crave food is an unexpected pleasure.  When I went home for awhile in the afternoon he gave me an order for all kinds of juices, though realistically, I think it will be a week or so before he can drink them (though when I returned to the hospital, he did check to see if I had filled his order, which I had).
His mucocitis has gotten worse, causing more pain along his digestive tract, which in turn requires more meds to keep him comfortable, which in turn makes him spacier and causes him to sleep more, which he has done quite a bit over the last 2 days.
The last couple of days have also been punctuated by visits from friends, relatives, his teachers, and one of his school buddies - Evan.  These visits, while short, have been real highlights of his days - a fresh infusion of friendship into a life filled with doctors, nurses, all kinds of people poking and prodding him, medicines, discomfort, and worst of all, 2 doting, anxious parents who jump everytime he moves.

Mo's teachers reading thru a thick stack of get well cards from students at Glenn Stephens.  Another thick stack was delivered to our house.  Many of the cards had a lot of work in them and are quite beautiful.



Weekend, 11/15-16/03; Day 1 & Day 2
“Now we wait”.
Those were Dr. DeSantes’ words at the end of the transplant on Friday.
So we are waiting.
Time is a relative thing. It is really a fabrication of our imagination composed of 2 elements: An event, and something that changes on a regular basis. We keep track of the number of times that something changes before and/or after the event. We give this observation the label “time” and we use it to regulate our reality.
The Bone-Marrow-Transplant Region in the Land of Cancer Treatment has its own measure of time: One might call it Transplant Mean Time, or TMT.  TMT is based on revolutions of the earth before and after the day on which the stem cells are infused, which is called Day 0. The days before Day 0 are counted in the negative.
For us, it looks something like this:
Day minus 10 – Admission to hospital. Prep for chemo
Day minus 9 – Chemo1
Day minus 8 – Chemo1
Day minus 7 – Chemo1
Day minus 6 – Chemo2 and 3
Day minus 5 – Chemo2 and 3
Day minus 4 – Chemo2 and 3
Day minus 3 – Rest
Day minus 2 – Rest
Day minus 1 – Rest
Day 0 – Stem cell and bone marrow infusion

After Day 0, the days are counted as positive numbers - since Friday was Day 0, Saturday was Day 1, and today is Day 2. I’m not sure when we stop counting the days, but I do know that we will be counting them for a while.  For example, Mo may be ready to go home by Day 30.  He will not be able to return to school until Day 100 at the earliest.
In addition to days, TMT is marked by the administration of medicines.  Some of the meds are given at regular intervals - 4 times per day, 3 times per day, etc.  Others are given as needed, and they mark time in irregular intervals.
In addition to waiting, the other major activity we do is watch.  We watch for medical events.  In the Bone Marrow Transplant Reality, any physical anomalies or extended episode of discomfort marks the beginning of a medical event.  This is also true in normal reality, but here any medical event can develop into something serious, so we must watch closely for them and work quickly to evaluate and respond to them when they occur.
The event we are waiting for is the production of blood cells.  By now Mo’s bone marrow and stem cells have found their way back into his bones, so we are waiting for them to restart the blood cell production line.  Medically speaking, we are waiting for them to engraft.  It is amazing that this happens. If those cells didn’t return to the bone marrow and engraft, high dose chemo treatments wouldn’t be possible – because few peoples bodies could recover from exposure to those powerful medicines. Engraftment takes 1-3 weeks, however, because Mo’s stem cells and bone marrow harvests were less than optimal, Dr. DeSantes has prepared us to expect Mo’s engraftment period to be on the long side of the range.  In the meantime, his immune system will continue to decline, so one of our main responsibilities is to prevent him from developing infections, which can be very serious for a person in an immuno-compromised state.  During this time Mo will be uncomfortable and will be given medications as necessary to keep him out of pain.  Barring any unforeseen complications, the most acute source of discomfort will be mucocitis, which is when the mucus lining of the digestive tract (which runs from mouth to butt), will slough off.  As this happens, Mo will develop sores in his mouth and on the walls of the rest of his digestive tract.
The medical knowledge and insight that Anne brings into this situation is a double edged sword.  For Mo's medical care, the sword has been a powerful ally.  Anne’s management of Mo’s treatments have brought him vast benefits.  A list of the changes she has made to his medications and her ability to navigate and regulate the complex medical system would fill a small book.  When an problem arises, Anne’s diagnostic skill is probably Mo’s biggest asset.  The other edge of the sword is that Anne's knowledge makes her aware of some of the frightening possibilities that a problem might lead to, no matter how remote that possibility might be.  Because of this, Mo probably gets a few more tests than another child in his situation.  For the most part, the hospital staff understand and accommodate her concerns.

Notes from Day 1 (Saturday):
On the positive side of things, Last night Mo slept very well, with no episodes of itching. While there was some itching this afternoon, there were no episodes of nausea and he also slept soundly for most of the afternoon. This evening he awoke refreshed, and enjoyed watching Homeward Bound before bed. He also tried out some small new headphones that plug directly into his ears. They work great and he said the TV was actually too loud when the volume on the hearing aide was turned up all the way!  This is a positive sign.  He is scheduled to have an audiology evaluation on Monday.
On the negative side of things, this morning Mo asked whether his hearing loss might be permanent. We discussed the possibility that it might, and that if it does turn out to be permanent, there are great hearing aides available and we will get one for him.  Clearly, we have chosen to undergo the BMT to eliminate his cancer, and if we succeed but he has to wear a hearing aide, it is worth it.  He understands this, but naturally, he was still very upset.  One of his main concerns is the fear that he will be ostracized if he has to wear a hearing aide when he goes to middle school next year.  Like all things, he put this in its place (or at least on a back shelf) in favor of focusing his attention on the requirements and opportunities of the present.  Also, his first mouth sores showed themselves today.

Notes from Day 2 (Sunday)
Things were hopping in the wee hours of the morning,  Around midnight, Mo complained of severe leg pain, a complaint he had expressed a couple of days ago.  As Anne mulled the possible sources of the pain, she became concerned that it could be a blood clot, so at 2 AM we trucked downstairs for an ultrasound, which was negative.  At that point I went home as Mo, now quite awake, turned on Dr. Dolittle and Anne went to sleep.  A few hours later Mo had a 15-minute coughing spell, and was given a chest xray (to look for pneumonia) that also turned out negative.  As the day progressed, he had some pain during the morning, and then a good nap for a couple of hours in the afternoon.  He awoke quite refreshed in the late afternoon, and watched The Great Muppet Caper and various TV shows.
His mouth sores are worse today, but he hasn’t complained too much about the pain.  He was given a patient controlled analgesic (PCA) – which is a continuous drip of narcotics with a push button control that gives him the ability to obtain some extra medicine when he needs it.  In the evening the itching returned.  Fortunately we have found a medicine that is pretty effective at eliminating the itching while also inducing sound sleep.
All of the fluids that go in and out are carefully measured to make sure his I/O is balanced.  One of the side-effects of the chemo is “capillary leak” wherein water leaks out of his blood vessels and into his tissue.  If he starts retaining too much water, he is given a treatment with a medicine (Lasix) to encourage his body to expel excess water.  He required one of these treatments today.  Despite that, we can see that he continues to retain a considerable amount of water in some parts of his body.  He also received a transfusion today.
We are in deep water, but it would be inappropriate to leave this entry looking like bad news, because I think the opposite is true.  For a good part of the day, Mo was awake and comfortable.  It occurs to me that this is about the best we can expect at this point, so we should be hopeful for more days like this one.  He was diligent about using the headphones today, so he was interested in tuning into what is going on (or the TV if nothing else).  In the early afternoon he was thirsty and drank a bit of water, which he promptly lost.  However, a couple hours later, when he was thirsty again, he said, “Dad, I think I won’t throw up if I sit up more when I drink.”  Personally, when he threw up the first time, I thought we had seen the last drink for a few weeks, but he is the person most qualified to decide what he able to do (the doctors would let him eat a pizza if he was up to it), so we tried it again. He took several more drinks this afternoon, including some apple juice, without a trace of nausea.  He also tried a couple of popsicles, but they were too uncomfortable in his mouth. Maybe tomorrow he will try jello.


Friday, 10/14/03 - Entry 2
Mo's stem cells and bone marrow, which were harvested from his body a few weeks ago, were transplanted back into his body today.  They had been cryogenically preserved (very deep freeze) and then thawed early this AM.  They had to be infused within 6 hours of thaw - we are on the cutting edge of medicine...  Mo slept through much of the transplant.  He was tired as he did not fall soundly asleep until about 3:30 AM.  He has continued to be plagued by itching spells, which have caused him to miss some sleep on each of the last 2 nights.  Tonight we gave him another medicine which will hopefully control the itching (it will also make him drowsy).  It was a tiny pill which he swallowed with a bit of water and has kept it down.  He is sleeping soundly as I write.
His hearing has not changed.  He reports it as being worse, but I think that yesterday's bout of confusion made it seem worse since he often didn't understand what people were saying to him.  One of the speech pathologists dropped off a little amplifier which he can use with headphones and it definitely helps his hearing - though the headphones are uncomfortable.  We will get a few other pairs for him to try out.  Also, he was able to hear Grandpa Sy just fine on the phone - which is great.
He is under the influence of a lot of medication - basically drugged out.  He spends quite a bit of time watching TV, though he has perked up a few times when visitors or some of the medical staff drop in for an chat or an exam.  He also enjoys playing with his GI-Joes.  While we didn't quite get him connected to his class via webcam, we were able to connect him with Mabel using the webcam. He really enjoyed seeing her, but hasn't really been up to it over the last couple of days.  Maybe tomorrow.
Several people told us that the stem cell transplant would be anti-climactic.  I did not find that to be true.  In the scheme of Mo's cure, it could be a very important event, and while it wasn't as exciting as an episode of ER, it was a calm (despite a couple of glitches) spritual experience with Dr. DeSantes, nurse Julie, Mo, Anne, and I.  All of the "product" from the 3 pheresis sessions and the bone marrow harvest were mixed into one bag - a priceless elixir.  The procedure lasted a couple of hours.  Despite the $50,000+ worth of IV pumps which are our constant (often noisy) companions, Dr. Desantes ended up injecting all the stem cells and bone marrow in by hand, one syringefull at a time.  He was meticulous about getting every cell he could out of all the syringes and tubing.

After Mo's stem cells were infused, he received a surprise visit from members of the Wisconisn Badgers Football Team, which, despite the fact that he is not currently following football, he said was "a great visit" (Mo still has a poster of Ron Dayne in his bedroom).  Thanks guys, and good luck against Michigan State tomorrow.


Friday, 10/14/03 - Entry 1

A few large obstacles have appeared on this week's trek through the land of cancer treatment.  Unfortunately, we have crashed into some of them.
On Tuesday, we noticed that Mo was having trouble hearing. It was the day after the last dose of chemo and he was retaining a lot of water (he is given a lot of IV fluids to prevent the chemo medicines from damaging his kidney and liver) and was quite tired to boot.
On Wednesday the hearing loss was quite noticeable and became a major issue of concern.  After the first round of chemo treatments (last Summer) Mo had some hearing loss in the high frequency range (higher pitches than those in human speech).  This was caused by a medicine that contains the element Platinum, which is a heavy metal.  Last week Mo received a higher dose of a different drug that contains Platinum, and apparently it has caused significant hearing loss.  While there is a chance that his hearing will partially or totally recover, there is a chance that it will not.  We were all very surprised by this turn of events, and Dr. DeSantes said he has not seen it happen before.  Needless to say this has increased our anxiety.
On Thursday Mo awoke around 5:30 AM with itching on his head, back and legs.  As I was lightly scratching his skin and applying some skin cream for relief, I noticed that he was very confused.  In addition to having trouble hearing what I was saying, he was having trouble understanding much of it and much of his conversation consisted of short sentences about random topics – he was in a state of confusion.  At this point in time he had been given many medicines including a patch that is worn behind the ear to prevent nausea (these are also used to prevent seasickness).  I called Anne who immediately suspected the patch as the source of the problem, as she has had similar complaints from her patients.  We removed the patch, but knew that it could take a day or two for the medicine to work it’s way out of Mo’s body.  So all day Mo was like an old man with Alzheimer’s.  While Dr. DeSantes agreed with Anne’s analysis, he informed us that there were other possible causes – some very frightening.  I cannot describe the anxiety and sadness of this day as we waited, watching every detail of Mo’s behavior for signs of these symptoms receding.  It was certainly one of the worst days of this whole ordeal.  In the late afternoon, when Mo received his first visit from the representatives of the Make A Wish foundation, we noticed that he was able to focus much longer on conversations – a very positive sign.  By 7:00pm, he was finally tired enough for sleep (the medicine also caused him to stay awake).  As he was going to sleep, he snapped at his mother, a sign that his sensorium was improving.  As one might imagine, many people have told us how sorry they are that this has happened.  I appreciate these sympathetic gestures but am always mindful that things could be worse, for it is not hard to imagine people who are worse off than we are.  Today however, I did not have that feeling.  Of course things could be worse, but I could imagine few tragedies worse than permanent damage to Mo’s disposition.
On Friday Mo was back to himself – somewhat withdrawn because of everything that is happening to him, but not at all confused.  As the anxiety over Mo’s confusion fades with the symptoms, the anxiety over his hearing loss reclaims its position at the forefront of worry.  But as a landmark of the reality of this surreal landscape, the occurrence of his hearing loss, while depressing, isn’t anywhere near as depressing as it was before the episode of confusion.  If he requires a hearing aide after the bone marrow transplant, so be it...
Mo has a rash in many places, especially on his legs, where it has been present for about a week.  It is a response to the chemo, and thankfully it doesn't bother him much.  Even when he has itching spells, the rash doesn't seem to be much of a problem.
Anne, Mitch or both are at Mo’s side 24/7.  We have learned to watch for many of the pitfalls that can disrupt this treacherous journey, and we have avoided a few, but as a review of the chronicle of the last 5 months would show, sometimes we are ambushed so suddenly, that all we are able to do is develop a strategy to deal with new injuries.  There is no way to honestly paint a good picture of the situation.  If there is a shining light, it is Mo, whose attitude remains stellar, despite all that has happened.


Wednesday, 11/12/03
Overall it seems that the doctors are pleased with how Maurice is doing. He has not had any unexpected difficulties at this point. Maurice has been spending most of his time resting. He has been doing well on his intravenous nutrition, but he is still quite weak, tired and nauseated. The doctors have increased his medications to help his nausea, and by early this evening he became more comfortable. We could tell that he was feeling better when he made a game out of the dreaded bed bath. He had a wonderful visit from his school principal, Ms. Yoder. He shared some of his treasured school gossip with her, top secret info that principals are not supposed to know about grade school kids! Although we have been telling Maurice not to worry about his homework, he gave a huge sigh of relief tonite when he got the official word from Ms Yoder that she was not expecting him to do homework until he feels better!
Tomorrow is another day of rest, but Maurice is also very excited about his scheduled meeting with the people from the Make a Wish Foundation (which includes one of his teachers, Ms Kebbekus).  Maurice has all kinds of ideas of what he would like to do for his wish, and tomorrow he will have a chance to start materializing these thoughts into a plan. We are all so thankful for this opportunity.  It is so very important for Maurice to have things to look forward to, in order for his mind to drift into positive places and create wonderful dreams as he faces these challenging days ahead.


Monday, 11/10/03
Tonight Maurice finished his chemo!!!!
However, he's had a challenging day.  Considering the chemo and all the other meds he is on (anti-biotics, anti-viral, anti-fungal, anti-nausea, anti-pain), the soreness from yesterday's surgery (his new catheter was placed on his right side (the same site as the first port) and the cracked one was removed from his left side, which means 2 incisions), the weakness from not eating for over a week, and weariness from an almost 11-month battle with cancer, he's doing great, but for most of today he was definitely under the weather.  Due to low energy, we did not ask him to do anything beyond what was medically necessary, so he spent most of the day watching TV, quite under the influence of all the meds.  Comfort was the major goal of the day.
He felt good for a couple of hours in the late afternoon.  When he developed hiccups, it cost us about $2 in change to cure him using Grandma Shari's patented technique of challenging the hiccupper to produce a genuine hiccup for money.  He took pride in his earnings as usually it only takes one coin (which he doesn't get if he can't produce a hiccup after it is offered to him).  Around 5:00 he was given his afternoon bath, after which he sat in a chair for about 20 minutes, which is good for his body.  Unfortunately, he had to have his new catheter unbandaged, cleaned, and rebandaged which was very painful.  Because of his dropping immunity, with its associated war-on-germs, the bandage and cleaning will have to be done every three days - probably until he is released from the hospital.
Earlier in the day most of his oral meds were switched to IV.  In the early evening his temperature started fluctuating, marking the beginning of the descent into the immunocomprimised state.   Several anti-biotics were started and fluids were drawn to hunt for infections.  We knew this was going to happen at about this stage in the treatment.
The macro picture at this point is simple:  Mo's immune system will continue to decline until his stem cells and bone marrow, which will be 'infused' on Friday morning, find their way back into the bone marrow and start producing blood cells (engraft).  During the weeks and months after engraftment, his immune system will recover.  The goal will be to prevent (or control) infections and keep him comfortable until that happens.  Tomorrow he will start receiving IV nutrition, which should make him a bit stronger and more energetic.


Sunday, 11/09/03
Maurice did wonderfully with surgery this am. Everything went smoothly, and we are told that his new IV line, called a Hickman catheter, will be much more comfortable than his old pheresis catheter. He is certainly tired today, between being awake for chemo and baths last nite, and up for surgery this am. Nevertheless, he inspected his new line to make sure it has no cracks,that it was hooked up to all the right places and covered correctly. Maurice remains a very active participant with his health care decisions, and he is no slouch with the details!


Saturday, 11/08/03
I'm not much for Murphy's Law, because if anything that could wrong did, everything would go wrong.  However, I think we can all agree that Mo has had more than his share, and today he had another stroke of bad luck: one of the connectors on his pheresis catheter cracked.

A double lumen catheter (split into 2 tubes) is required for Mo's chemo because he needs to have more than one fluid infused simultaneously (see treatment page for more details).  There are a number of different types of double lumen catheters and the pheresis catheter was used because of it's larger tubes which were necessary for the harvesting of Mo's stem cells (pheresis) a few weeks ago.
Unfortunately and disappointingly, the cracked connector (the blue one in this case) cannot be repaired, so the whole catheter has to be replaced.  This requires surgery and Mo is scheduled for the procedure around 7:30 AM on Sunday.  The pheresis catheter will be removed and a "Hickman" catheter will be implanted.  The Hickman is a bit smaller and much more durable.  In the meantime, since the blue line is out of service, he had to have an IV put into one of his arms to be used duriing tonite's chemo (though the actual chemo medicine will still be infused through the red lumen).
Needless to say, this did not make Mo very happy.  He hates having IVs put in and he has a recurring fear that he will awaken during surgery.  Dr. Goetz (in the pic below) did a great job inserting the IV (a difficult task as Mo's veins are very hard to find) and we were able to allay the latter fear, but he was still quite upset for awhile. As always, he eventually took control of his fears and spent the rest of the evening watching TV and then visiting with our friend Corrine, who's visit from California he has been looking forward to.
Anne pointed out that while this is certainly a drag, the situation would've been much worse if it would've happened next week when he will be much more susceptible to infections and the surgery would've been much riskier.
Medicines2&3 are each infused over 3 hours, one after the other.  Medicine2 ran from 6:30pm to 9:30pm, and Medicine3 will finish around 12:30am.  For the next 3-4 days, Mo will have to have a bath every 6 hours to prevent Medicine3 from accumulating on his skin through normal respiration (sweating).  The bath is done in bed with moistened cloths.  Medicine2 made him uncomfortable for awhile, but he eventually fell sound asleep.  As I finish this entry, we have just completed his first bath, given at midnight.  It wasn't too bad - he barely woke up despite the thoroughness of Mary Kay (his nurse), with me washing washing the easy parts - everything from the waist down....
More on Sunday...

Listening to see if swallowing popcorn would sound
the same as it would on cartoons.


Friday, 11/07/03

Today Mo completed half of his high-dose chemotherapy!  But there are no breaks for celebrations.  Tomorrow he starts receiving Medicines2&3.
There are some limiting factors that affect the schedule of the chemo.  First and foremost is that we need to wait about 72 hours between the last dose of chemo and the infusion of the stem cells and bone marrow.  Because we used the kidney function tests to control the dose of Medicine1, chemo on Thurs. and Fri. was given late in the day.  We must wait 24 hrs. after giving Medicine1 before giving Medicine2&3 (which are given one after the other).  On Sunday and Monday we also must wait about 24 hrs. between doses.  We wait 72 hrs after chemo to give bone marrow so that the chemo is completely out of his blood and won't damage the new marrow.  As we project this schedule out into the week, he won't be ready to receive his stem cells until late Thurs. or early Fri.
The stem cell infusion is a small event but a big deal.  One of the nurses told me that they have to do several hours of preparation for it and that they actually swab and culture each IV bag so they can anticipate any infections which might occur from bacteria lurking on the bags.  Some people treat transplant day as a second birthday as it can mark the beginning of life after cancer.
Mo had a good day.  He had to get up early for his kidney function test, which was difficult to do.  He has had several of these tests over the last few weeks, and the procedure goes like this:
      1. Injection of radioactive liquid
      2. Blood test after 1 hr.
      3. Blood test 2 hrs. after the first blood test.
      4. The kidneys will remove some of the radioactive material.  By measuring the amount of radioactive material in his blood, they can get an idea of how well his kidneys are working.
   As we headed to the third floor for the test, I asked Mo if he wanted to come back to his room while waiting for the first blood test or stay in the radiology waiting room which is a comfortable place laden with video-game computers.  He told me that he wanted to come back to his room, maybe go to back to sleep.  As the lab tech was injecting the material, he asked where we were going to be for the next hour, and as I began to say we'd be back in Mo's room, Mo interrupted me to say we'd be in the waiting room.  Mo's name is on the list of high scores for a few of the games on the computers there.
Whe we returned to his room, Mo ate a half bag of microwave popcorn, his meal for the day.  He started doing some homework when I left at 11:30 (Anne and I are alternating sleepovers), but then became tired and slept for most of the afternoon.  Later in the day he woke up w/good energy, did some homework, visited, and watched some TV.  About 9:00 he was given his anti-nausea medicine, which knocks him out pretty fast.  He will be getting that medicine a few times/day for about a month.


Thursday, 11/06/03

Yesterday and today Mo received his first chemotherapy treatments of the BMT.  He will get one medicine on the first 3 days (Medicine1), and 2 other medicines (Medicines2&3) on each of the following 3 days.   He has been feeling good but tired, with some short periods of discomfort at bedtime.  Because Medicine1 can reduce kidney function, his kidney function is tested each day before he is given the medicine (meaning tests on Thursday and Friday morning, last week's kidney test was used to determine Wednesday's chemo dose).  By testing his kidneys, the dosage can be adjusted each day.  If his kidney function is lower, then the kidneys will remove less of the medicine from his system, so the doctors will give him a lower dose.  If it is higher, he will get a higher dose.  Today's test showed that his kidney function has increased significantly since last week - so the kidney damage from the acyclovir (medicine given for shingles a few weeks ago) continued to reverse itself, which is great news.  This also means that today's dose was higher than yesterday's, which, like this whole process, is bittersweet.  It will take quite awhile to getover this treatment, so the higher the dose, the more severe the side effects.  However, considering that we have decided to face this storm, we must try to derive as much benefit as possible.
Mo's spirits are good, though he is tired quite a bit of the time - so not much is happening in the homework department.  In addition to the chemo, he is taking a number of other medications.  Some of these meds also make him tired and less focussed, so it is looking like he may spend a lot of time resting, playing games, and watching TV during the next month.
The staff at the UWCH is great.  They are very skilled at taking care of children who are undergoing BMT.  In addition to attending to his multi-faceted medical care, they have helped us setup a schedule which includes: OT/PT, bathing, housekeeping, school, medicines, exercise and recreation.  This is more activity than Mo's energy can accomodate, so they (and us) remain flexible, varying his schedule depending on how he is feeling.  I'd like to think that we will develop a routine, but it doesn't look like that will happen - the situation is too complex to predict the day.  As has happened under chemo in the past, Mo has lost his appetite.  He is still eating a small amount of food each day, but I think he will be on IV nutrition sometime next week. He will get his last dose of chemo on Monday, and Dr. DeSantes, the BMT specialist, is hoping to wait until after chemo to start the IV nutrition.
One of the challenges of this ordeal is cleanliness - but not in the ordinary sense of the word.  In our corner of the hospital, everyone has to wash their hands twice by the time they enter our room, and all objects must be wiped down when they are brought in.  If a hospital staffperson visits and forgets to wash their hands, it is our job to ask them to do so.  There are 2 signs on the door listing precautions related to preventing germs from being brought into the room, and another with large bold print that simply says "Stop, you must wash your hands upon entering".  Sometimes there are additional signs with precautions related to the medicine he is receiving.  We are not allowed to eat or drink in Mo's room, and we have to go down the hall to use the bathroom.  Mo is not allowed to leave the room, except for medical tests, and then he must wear a mask.  We also must put a mask on him during room cleaning.  Within a few days after chemo (toward the end of next week), Mo will be very vulnerable to diseases, so it is essential that we allow as few germs as possible to pass through the door.  Maybe we should add "No Germs Allowed" to the collection on the door...
Just to provide another glimpse into this reality:
Mo's bodily fluids continue to carry the chemo agents for a day or so after treatment, so if we don't need the chemo ourselves, we have to be careful when we handle them.  Further, Medicines2&3 are toxic to the skin, so we have to clean Mo's skin and brush his teeth 4 times per day on Sat.- Mon. when he receives those medicines.  I won't get into what happens if they spill one of these meds or if it were to leak out of the catheter and into the skin... My old friend Chris McHugh (see our home page) told me she had both of these experiences.
Many people have generously signed up to bring food to our house during the BMT.  We are very grateful and very touched by this.  The food has been great, and it is very helpful not to have to cook or eat out all the time.  It definitely allows us to spend much more time at the hospital.  Also a big thanks to Grandma Shari for coming up from Orlando to help out for a month and to Grandpa Sy for being flexible and accomodating this arrangement.
We updated Mo's Space to include a paragraph he wrote after Wesley Clark called him last week.  Also, a few pics of him on the phone.


Wednesday, 11/05/03

Yesterday Mo was admitted to the hospital to begin high dose chemotherapy with bone marrow transplant (BMT).  He was given fluids and medicines, but the chemo doesn't start until later this morning.  He had a bit of a reaction to one of the meds, so he took a power nap from 8 to 10.  When he awoke he felt much better, so much better in fact that he couldn't get back to sleep and is watching ET as I write this quick update at 1:30 AM!
I posted some pictures from Halloween and Mo's bowling birthday party, but then decided to start a new page of this journal to chronicle the BMT.  So if you would like to see them, they are on the 09/10-10/31 page.