were Dr. DeSantes’ words at the end of the transplant on Friday.
So we are waiting.
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.
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.
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.
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.
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
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):
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)
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
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.