Friday, 10/ 31/03

Based on the results of Mo's kidney function test on Wednesday, his doctors have given him the green light to proceed with the high dose chemo with stem cell and bone marrow transplant; so we are going to move out of the eye of the storm.  Medically, the procedure is referred to as BMT for bone marrow transplant, so that's what I'll call it from now on.  Just to reiterate the procedure one more time, it goes something like this (see the treatment page for more details):

-Six days of high dose chemotherapy.
-Three days of rest.
-Put stem cells and bone marrow back intravenously.
-Bone marrow and stem cells migrate back to the bones and start producing blood cells.
-It will probably take 2-3 weeks for blood cell production to resume.  During this time he will have very little resistance to infections because the chemotherapy medicines target rapidly growing cells, which include the cells of the immune system.
-Once his immunity is partially restored, he will be able to come home, though he will not be able to go to crowded places (including school) for a couple more months.

Once Mo is admitted to the hospital on Tuesday 11/4, he will be in isolation.  This means he will not be able to leave the room except for medical tests, but he can have healthy visitors.  We need to make every effort to minimize his exposure to germs which can cause any illnesses.  There are restrictions on what can be brought into his room and everything must be wiped down before it is brought in. We are not allowed to eat in his room or even use the bathroom.  He will continue to do his best to keep up with his schoolwork.  There is a school in the hospital (which is run by the Madison school district) and a teacher will be available to work with him when he is feeling up to it.  We are working on setting him up with a webcam so he can stay in touch with his classmates.
The delay in starting BMT allowed Mo to enjoy the 4 day weekend - a byproduct of this week's Teacher's Convention.  Not only did he and Becky have 2 days off, but the break coincides with Halloween and the weather was unseasonably beautiful.  Mo actually slept until noon yesterday, and then we sat outside and carved pumpkins for a couple of hours with our neighbors, the Temmes.  Tonite the Temmes were kind enough to haul a treat bag for Mo with them on their trick-or-treat adventures.  They brought it back filled with enough treats to last a few months.  Back at the ranch we did our best to scare the neighbors while handing out treats.


Tuesday, 10/29/03

Yesterday Mo received a very special treat - a phone call from General Wesley Clark, who was campaigning in Wisconsin.  Grandma Shari, who works on Clark's campaign, sent a request up the pipeline for Mo to possibly meet Clark at his campaign stop in Madison.  The meeting was not doable, for scheduling reasons on one end and health reasons on the other, but, after hearing about Mo, General Clark was kind enough to call Mo and talk to him for about 15 minutes in the late afternoon.  Mo, who takes an interest in the political forces which have so much influence on our lives, prepared a list of questions, and, as soon as the General called, Mo began grilling him on issues such as Iraq, the economy, the environment, and healthcare (an issue which dominates our lives at the moment).  Check Mo's Space for pics and the paragraph he wrote after the conversation (I'll post it soon).

The discussion wasn't all politics, as General Clark also asked Mo questions about himself, his family, and his treatments.  General Clark must've made quite an impression, because at the end of the conversation Mo told him that he would help with the campaign when he finishes chemotherapy -- so don't be surprised if you see Mo handing out Clark literature at the Farmer's Market next Summer.
From a health perspective, Mo has very little residual pain from Friday's bone marrow harvest.  He slept quite late yesterday, and was quite stiff (though he did walk around the house a bit), so he didn't make it to school.  Today he is still a bit weak and tired, but he was feeling well enough to go to school after sleeping in.

Home in time for happy hour on the day
after bone marrow harvest.

A few pix from the bowling party (10/18)...

After school on 10/20 the weather was shouting "Go Fishing".  Once again Mo landed a few panfish, giving him a perfect record for fishing this year (no skunks, unlike his dog, who had a close encounter of the worse kind about a month ago at 11:00 on a cold evening).

Note the new fishing duds - a birthday present from Dr. Sue...


Sunday, 10/27/03 - Quick Update

Mo came home from the hospital yesterday afternoon.  He was extremely sore from the bone marrow harvest.  It was quite painful for him to move at all.  Today he felt much better, and, while he couldn't get up and walk around, he had a lot less pain.
Monday should be even better.


Friday, 10/25/03

Yet another obstacle has materialized on our path through the landscape of cancer treatment..  Yesterday, Mo had a kidney function test which indicated that he cannot start the transplant as his kidneys have not recovered enough from the effects of the acyclovir (see previous entries below).  The positive reports in the last couple of journal entries were based on blood tests, but as it turns out, the blood test does not provide the most accurate measure of kidney function- it is too coarse of a test.  Yesterday's test involved the injection of a radioactive dye followed by blood draws at 1 hour and 3 hours after the injection of the dye.  This test (call a "GFR") provides much better accuracy of kidney function.
The way around this obstacle is to conduct a GFR each week, and start the transplant as soon as Mo's kidney function reaches an acceptable level.  Hopefully that will be next week.  Nevertheless, Maurice did undergo bone marrow harvesting under anesthesia today, in preparation for the transplant. The harvest was successful and he tolerated it well.  He will have a few days of being sore and stiff in his lower back.  He will be in the hospital tonight but should go home tomorrow.
Note that Mo's page has been updated and that we've added a guestbook to the website.


Friday, 10/17/03

Mo came home from the hospital on Wednesday (sorry for the late notice).  The kidney damage from the Acyclovir had reversed itself by Wednesday AM, which was of course great news, especially since we'd been told not to expect that to happen until the weekend.  We also learned, however, that his kidneys have been compromised by previous chemo treatments and in fact his whole body would like a break and a chance to rest and heal after all its been through in the last 10 months.  Not to be set back, Mo attended school yesterday and today.  Yesterday, when I was heading to his classroom after school, his gym teacher stopped me to tell me that Mo had participated in football during gym (at his own insistence!)  I was shocked, concerned, and pleased.  His gait seems a bit better this week and it is through activity that he will recondition himself.
The bone marrow harvest and high dose chemo have been delayed 1 week - the harvest is now scheduled for 10/24 and he will be admitted for chemo/stem cell/bone marrow transplant on 10/27 (with treatments starting on 10/28).
More good news is that his birthday party will be held tomorrow at a bowling alley.  We are really looking forward to it.
I am working on a guestbook for this website.  It should be setup early next week.
Thanks for all the help and concern.  Have a nice weekend.


Tuesday, 10/14/03

Mr Maurice remains in the hospital.  On Sunday it was discovered that the medicine (acyclovir) which was being used to treat his shingles was damaging his kidneys .  The medicine was discontinued and the kidney damage began to reverse itself. Because it is important to control the shingles, an oral antiviral medication has been started - and hopefully it will be safe for his kidneys.  His doctors are closely monitering his kidney function so they can adjust the dosage as needed.
Since his admission to the hospital on Friday, Mo has become anemic and his appetite has declined, so he is being given a transfusion today.  Hopefully this will alleviate both problems.
Over the course of the last few weeks we have noticed a decline in coordination and strength.  We feel this is caused by a cumulative effect from all the procedures and chemo that he has recently undergone.  However, his doctors want to rule out any unforseen problems, so the last couple of days have been filled with consults from a variety of specialists.  As a part of this evaluation, last night he was given the mother-of-all-tests, the brain MRI, which came out clean!
Despite this setback of shingles, I would point out that Mo is not the least bit uncomfortable .  He has been more tired because of the shingles and low food intake but he has not had a fever since Sunday, and he has spent 2-4 hours each day this week doing homework.   We are hopeful that he will be able to go home tomorrow.  At this time I don't have any update regarding bone marrow harvest or the high dose chemo with transplant, but since they will be delayed, we may be able to squeeze his birthday party in before we start those treatments.  If not, he'll have to have two parties next year.  In the meantime, here are a few pictures from some of the birthday celebrations he did have:


Sunday, 10/12/03

Just a quick note to let everyone know that Mo is in the hospital.  On Friday night we discovered that he has shingles, and so he had to be admitted to be given antibiotics.  We had hoped that he would feel good enough to have his birthday party on Saturday, but he was tired and had a low-grade fever, so we cancelled it.  The shingles are not severe, so he is not very uncomfortable, except for an occasional fever which lasts a couple of hours.  He has had a reaction to the medicine they are giving him for the shingles - the doctors are working on it and I don't have any info on how we are going to proceed at this time.  This will delay the high dose chemo treatment - no details on that either.  We had been told that he might get shingles after the chemo, when his counts will be very low, but we did not expect it to show up at this time.
We really appreciate that people are asking what they can do.  Not too much at this time, but he does like to get mail, so you might send a note.  Some people have sent gifts, which of course we appreciate, but we really don't need anymore stuff at this point.  If you do want to send something, please don't send stuffed animals.  As Mo moves into the high dose chemo treatments, there will be restrictions on anything that can harbor germs, and we've been told that stuffed animals are forbidden.
More info as things develop...


Sunday, 10/05/03

"I can't believe what a rollercoaster you guys are on", a neighbor told me on the phone the other day.
I usually think of the pursuit of a cure for cancer as a hostile landscape that we are crossing, and in this landscape, even when you think you can see where you are headed, new obstacles appear without warning - and you have no choice but to go over or around them.  The unpredictability of the disease permeates the effort to find a cure.
At Thursday's pheresis (stem cell harvesting) session, we learned that the actual number of stem cells that were harvested from Mo's blood is much lower than expected.  He had another pheresis session on Friday, along with a transfusion, as his red blood cell count had dropped over the course of the week.  The less-than-expected harvest (about 40% of our goal) is not horrible news, because we will still be able to use the stem cells after chemotherapy and we will still benefit from their ability to quickly engraft (plant themselves in the bones and start producing marrow and blood),  Because we can no longer harvest stem cells from the blood (the chemo he was given 2 weeks ago created a small window of opportunity to harvest the stem cells directly from his blood), we will also need to harvest some bone marrow, which will also be frozen and then replaced after the high dose chemotherapy.  Like the stem cells, the bone marrow will also find its way back into Mo's bones.  Once it gets there is will produce more bone marrow which will help restore his blood.  Because he will be a bit under the weather after the bone marrow harvest, it has been postponed until after his Oct. 11 birthday party.  It is scheduled for 10/17, and he will be admitted to the hospital on 10/20 to begin high dose chemo.
As with all things, Mo is taking this perfectly in stride.  His energy is a bit low, but his appetite remains good.  Most importantly, he remains high spirited and well adjusted to the situation.  He did quite a bit of homework during his 3 pheresis sessions last week, and is caught up with his schoolwork.  After a 2 month break from chemo his hair had started to grow back fast and furious, but then last week his eyebrows and eyelashes began to abandon ship once again .  This was of course quite annoying as hair was getting in his eyes, so he stood in front of the mirror and removed all the loose hair and put it in a paper cup.  He put a sign on the cup saying something like "please do not disturb my former hair".  One of his school assignments was to write a paper about a haircut, so he wrote a beautiful story about the first time he had his head shaved.
Today Mo played a game of laser tag at his friend Evan's birthday party.  It tired him out a bit to carry the heavy vest around for 1/2 hour, but he had a great time.  He is really looking forward to his birthday party next Saturday, which will be held at a bowling alley.
Monday and Tuesday will bring a gaggle of medical tests to be sure he is prepared for the high dose chemo.  We'll write more when we learn more.


Wednesday, 10/01/03 - 2nd Post

Mo received a valuable, unexpected birthday present today - his stem cell counts were high enough to harvest!  We received the surprise phone call at 12:30 and went to the hospital, where he spent 3 1/2 hours hooked up to a centrifuge.  It's an interesting process.  The machine is connected to both catheters on his pheresis catheter, so it is able to extract blood from one tube while simultaneously replacing the filtered blood back into the other tube.  Over the course of the extraction all of his blood is cycled through the machine twice. Only a small portion of his blood is in a the machine at any time and only a tiny amount of blood containing the stem cells is extracted.  The rest is returned.
We will return tomorrow at 8:30 for a repeat performance.  The staff at the hospital are pretty confident that they can harvest all the stem cells they need from these 2 sessions.  They can do another harvest on Friday if necessary.  This means no pelvic bone needles!  Also, when it is time to return his stem cell to his body (after chemo), stem cells harvested using this technique ("pheresis") usually start producing bone marrow and blood cells more quickly than those harvested by needle (for details, see the "treatment" page).


Wednesday, 10/01/03

Mo came home on Monday afternoon and has been feeling great.  Unfortunately, there were not enough stem cells in his blood to harvest.  We will test his blood again today, and if there are still not enough, we will have to go to plan B, which is to harvest them from his pelvic bone using a pelvic bone needle.  I'll provide the details when we get there.
Yesterday there was no school, which gave him a chance to catch up with schoolwork, followed by a birthday visit from Uncle Neil and soon-to-be Aunt Marie.  Today he is back at school.
I have updated the treatment page of this website with a description of Mo's upcoming treatment, which is called "high dose chemotherapy with stem cell rescue".


Sunday, 9/28/03

Mo is back in the hospital.  As part of the preparation for stem cell harvesting, he was given high dose chemo on 9/17, which lowered his blood counts.  We were expecting that his counts would be low enough to require a transfusion on Friday, 9/26.  On Friday morning we discovered that Mo had a slight fever, and because his counts are low, he was admitted to the hospital to test for and treat any infections, and also for a transfusion.  In the middle of the afternoon he spiked a fever and his blood pressure dropped, so it was a good thing he was in the hospital.  He felt better after a couple of hours, but has had to remain in the hospital for antibiotics. The doctors found that he has a bacterial infection in both of the ports of his new intravenous catheter.  He may be able to go home tomorrow after the doctors attempt to extract stem cells from his blood, and he will continue to receive antibiotics at home.


Friday Evening , 9/18/03
Mo is home.  The results of all of his tests are negative, so there is no evidence of any spread in his body.  He remains in good spirits but is tired from the chemo.  We are all tired.  Lots of new tasks as we start this leg of the journey.  We're looking forward to a relaxing weekend.  Hopefully he will be in school next week.  We'll report more when there are new developments.
Thanks again to everyone for all the support during this last couple of hectic weeks.


Thursday Afternoon, 9/17/03 - QuickUpdate
Mo's surgery today went great!  The port was removed and the pheresis catheter was implanted (on his left side this time).  The preliminary results of the spinal tap and the bone marrow biopsy are negative (which is great)!  Mo is in good spirits and is doing homework while being given fluids in preparation for chemotherapy.  Becky and I will show up with dinner and games in a little while.
At the risk of being repetitive, I will note that when major events like surgery's happen, I do send out an email to let everyone know about it.  I also have a request-only email list to which I send out a notification every time I update the site, so if you would like to be included, please let me know.


Thursday, 9/17/03

We have good news and not-good news. The good news is that Mo has been feeling great. On Sunday we visited the beautiful Memphis Zoo and went to the movies. On Monday we had a great flight home, and Mo has been attending school these last 2 days.  He shows great determination in doing as much as he can for himself (so much so that we have to keep an eye on him) and his mobility is about as good as before surgery.  The range of motion of his neck is still limited, which only to be expected 1 week after surgery.
The bad news is that the tissue which was removed last week is a tumor and so is considered a recurrence.  He will now have chemotherapy treatments which will be quite different and of a higher dose than the previous treatments.  We do not have all of the details at this point, but a picture of the future is beginning to appear.  The treatment begins today.  Here is a rough outline of the next few months:

  • Thursday, 9/18
    Mo will undergo surgery to remove his port and replace it with a different type of catheter called a pheresis catheter, which is like a hickman.. While in the surgical suite, he will also receive a spinal tap and a biopsy of his bone marrow.  It is not expected that the cancer has spread, but we must take all precautions.  After surgery, he will be given a single dose of chemotherapy, and he will stay overnite at the hospital.
  • Friday, 9/19
    Mo will get a bone scan, which uses nuclear medicine to image his bones to look for spread, which is unlikely.  He will be discharged Friday or Saturday.

A subcutaneous port is shown on the model's left side.
On the right is a Hickman, which is a catheter (tube) that hangs outside the skin and can be used for withdrawing blood and giving medicines and intrevenous fluids.
  • 9/20-29
    Mo will be given a growth factor to stimulate stem cell growth. Stem cells reside in the bone marrow, and are the seed cells that produce red and white blood cells and platelets.  On about 9/29, if his stem cell counts are high enough, blood will be withdrawn and centrifuged to collect the stem cells.  The stem cells will be stored until later in the treatment when they are needed.
  • The next 3-4 weeks after stem cell collection
    Mo will be given a many tests in preparation for "high dose chemo with stem cell rescue".
  • Chemo, 5-7 days
    Mo will be given high dose chemo consisting of 3 medicines over the course of 5-7 days.  The goal is to kill all rapidly dividing cells in his body (cancer cells grow rapidly).  At this point his blood counts will be at 0, so the risk of infection is high.  He will be on a sterile wing in the hospital.  He will be given antibiotics and various intravenous medicines, fluids, and food.  He will be uncomfortable.
  • Stem cell rescue, 4-5 weeks
    After the chemo, Mo's stem cells will be re-introduced into his body.  Magically, they find their way back to the bones and start producing bone marrow, which then produces blood cells.  This takes 4-5 weeks, and Mo will remain in the hospital the whole time.

When his blood counts are high enough, Mo will be discharged, though he will not be able to go to school until at least 100 days after the stem cells have been re-introduced into his body (called "day zero").  As you can imagine, I wish I had better news than this.  As has been the case throughout this ordeal, Mo has put it in its place and is prepared to accept yet another challenge on the journey toward a cure.

At the Memphis Zoo penguin display.

People are asking what they can do, and right now there isn't much.  As we move into this storm, we will certainly let people know what we need.  For close friends and relatives - I have no idea what Mo's energy level will be during the next 4 weeks, but if he is homebound, he may really appreciate short visits to play games.  We will meet with Dr. De Santes next week, we may have more information after that meeting.

Once again, thanks so much to everyone for all your support.


Friday, 9/12/03
Mo had another great day today.  He has been sitting up all day and even got up to play a couple games of air hockey in the game room!  We're planning to move into a hotel tomorrow.  We're still planning to be home Monday afternoon.

Doing business (and homework) in his Memphis office.


Thursday, 9/11/03
First thing this morning Mo was given an MRI and then moved into a regular hospital room.  He arrived at the room hungry and ate 2 bowls of Fruit Loops and a good-sized handful of yogurt coated pretzels.  His neck is stiff and a bit painful, but there appear to be no changes in his ability to use his hands.  He had no trouble holding the cereal bowl and eating with a spoon.  Dr. Boop, the neurosurgeon stopped by and told us that this morning's MRI was clean, which is of course GREAT NEWS!  We will stay in Memphis a few more days, perhaps moving into a hotel on Saturday.  It looks like we will be able to keep our reservations for our return flight on Monday.  Fortunately, American Airlines has an emergency medical ticket which is significantly discounted and has a flexible return date.  A special thanks to them - they are the only airline who flies out of Madison that is generous enough to offer this ticket.


Wednesday, 9/10/03
Mo's surgery was performed first thing this morning and it went perfectly.  I think the surgery itself took less than 1.5 hrs (not including setup and closing the incision).  Dr. Boop met with us after the surgery and reported that he was very pleased with how smoothly everything went.  The tumor was easy to find and remove.  Mo is awake and doing great.  He has been drinking water, eaten a little jello, watching TV, and complaining about the various tubes sticking in various orifices.  He will spend the night in the ICU and then be transferred to a regular room tomorrow.  We are able to stay with him all the time.

Before starting medical appointments, we watched the famous ritual of marching the ducks from their rooftop palace to the marble fountain in the lobby of the Peabody Hotel in downtown Memphis.