Thursday, October 30, 2008
Here is the rest of the update from last evening!
First: I understand the Induction phase a little better...
This Phase is 29 days. Day 1 was 10/28, and Day 29 is 11/25.
**Day 8 is a very important day. Day 8 is on November 4th.
Up to this point Liz will have had lots of IV chemo on day one (10/29),
prednisone each day ( this is by mouth ), and an IM shot of chemo on
day 4, 5 or 6 (Not a shot every day, just one shot on one of these
**On Day 8 (November 4th), Liz will have another spinal tap, and
another bone marrow aspiration. They are looking to see if the chemo
is working by checking the white blood cell count in the spinal fluid,
and in the bone marrow. The results of these procedures will give a
good indication if Liz will be a Rapid Responder, or a Slow Responder.
If she is indicating she is a Rapid responder, that will be confirmed
on Day 29 (November 25th), by another spinal tap, and bone marrow
If the tests on Day 8 (November 4th) lean towards a Slow responder,
they will do another bone marrow aspiration (no spinal this time) in
one week (Day 15 - November 11th).
Additionally, on Day 8 (November 4th) Liz will again get heavy doses of
chemo. Two will be IV, and one will be Intrathecally, which means
through the spinal tap.
Lastly, they will be taking blood tests daily to assess Liz's complete
blood count (CBC), and to assess any side effects of the chemo. If her
red blood count is down she will be more tired, if her white count is
down she is more at risk of infection (her white count WILL be down as
this is the point of chemo), and if her platelets are down she could
bruise of bleed more easily. Occasionally, if the RBC's or the
Platelets are down, she will get a transfusion of blood or platelets.
These go through the IV.
At some point, (this is a good thing), Liz will get a "port." This is
a minor procedure (under general anesthesia I think), in which they
will place a diaphragm like access just under the skin by the clavical.
This way, all the IV meds, and some of the blood work will be able to
be done via the port. The benefits of the port are that Liz won't feel
a stick (they put a bit of numbing cream on it ), it is just about
invisable (you kinda gotta know that it is there..or you wouldn't know
it was there...), she can swim with it (she will have it for the next
few years), and there is a decreased risk of infection with each stick.
OK - a little more?
On to the fun stuff!
The Lothrops chose to be enrolled in the study that compares side by
side chemo protocols (both of which have the same effect), with the
side effects of each. There were 2 options. In one, she would go to
the outpatient clinic once every 10 days or so to recieve escalting
doses of chemo, in the other she would spend a few days in the hospital
getting high doses of chemo.
She was randomized to the High Dose Methotrexate (The name of one of
the major players in the chemo arena). This is great news b/c Randy
and Christine had hoped for this option, but there was only a 50%
chance of being randomized to it. ( If they did not randomize, the
would automatically fall to the clinic option.) Now, in the beginning
phases (many months), when Liz gets chemo, she will be admitted to the
hospital for a few days.
The other very cool thing is that Liz's oncologist, Dr. Absolon, was
hoping for this option too. He had worked for several years at St.
Judes, and has lots of experience with the High Dose protocol.
When Randy and Christine were trying to decide whether to randomize or
not, Christine kept coming back to believing if they randomized then
God would choose, but if not, she was choosing...so they decided to
trust God...! God chose High Dose Methotrexate!
Dr. Absolon (male) is the attending oncologist, and Dr. Pope (female)
is the Fellow. (This means she is a pediatrician who is in the process
of specializing in oncology.) Dr. Pope was one of the Drs. that Liz
first met when they went to the ER. Dr. Pope and the Lothrops had an
instant good rapport. The Lothrops are very grateful that Dr. Absolon
and Dr. Pope are the Doctors that will be directing Liz's treatment.
By the way, the Lothrops tell me that each and every one of the staff
is amazing. They are all respectful,professional, helpful, and hope
giving. Randy told me that yesterday they had spilled something on the
floor, and asked for help to clean it up. The young lady in
housekeeping popped in, and cheerfully cleaned up the spill. Randy
thanked her, and her response was genuine and amazing..."Oh sir, I like
to keep the floors clean for the patients...!" Even housekeeping holds
the values of kindly serving the patients and families...
That reminds me....on the first night Liz was in the hospital they
changed her room. They had to wait awhile b/c the floor was being
waxed. Christine and I would go down the hall to see how close we were
to changing rooms. The house keeping gentleman was kind, friendly and
caring. After we got Liz all moved into her new room, Christine
noticed a note. The gentlman had pulled the privacy curtain back, and
secured it with a paper wrap. On the wrap he had written a note of
encourgment to Liz and her famly. How 'bout that for going the extra
There is a teacher in Mason that has had each Lothrop child in her
class at some point. Her name is Mrs. Gravlovic. Randy wanted me to
tell you, again, how God is meeting their every need, many times even
before they know they have a need. Mrs. Gravlovic approached Randy and
volunteered to teach Liz at home. She said she would get whatever
training she needed, and would go to the Lothrops home after she
finishes her school day. Amazing! (At some point Liz will be able
to go back to school, but it will be awhile...)
If you are wondering about bringing a gift to the Lothrops, but do not
kwow what to bring here are 2 ideas. Apparently Liz likes some kind of
"sports wrap, or pre wrap" to put her hair up. She uses it like a head
band..sort of...It comes in lots of colors, and seems to be the cool
way among athletes to keep your hair pulled back. It can be found at a
sports store. (I am out of my element here...so I may not have
explained this right!)
Additionally, yesterday, the Lothrops were give a manual of information
related to leukemia, treatment, resources, explanations, definitions
etc....did I mention that this is a MANUAL! (Think large, and thick...)
Included in the manual are book lists of suggested reading. There is a
list of general books, a list for children, and a list for adolescents.
If you want to e-mail, or call me, I can read the lists to you, and I
can keep track of the ones they already have. The lists are long, so I
don't think I can type all the books, but here are a few examples: 1)
Childhood Cancer and the Family, 2) Cancer in Children: Reasons for
Hope, 3) I Want to Grow Hair, I Want to Grow up, I Want to go to Boise:
Children Surving Cancer 4) On With My Life, 5) Kids With Courage.
One last note. The other day, when the Drs. were reviewing all the
treatment options, meds, etc...we asked them when Liz might expereince
the side effect of the chemo. They said people respond differently, so
they could not give us a definate answer. They will be keeping a close
eye on Liz to assess for side effects... This means that Liz could
very well experience some of the uncomfortable side effects of nausea,
vomiting, mouth sores...etc...The potential of side effects are always
present, and are not to be taken lightly.
Liz is in a good season of treatment right now. I want to caution us
though, that the road ahead could very well be difficult. The
indicating factors of continuing this protocol of treatment are how Liz
responds to the chemo...side effects, blood counts, secondary
infections etc...She is being hit with very, very powerful drugs that
are intended to wipe out each and every cancer cell. In the process,
the rest of her body could be affected with many very uncomfortabe,
difficult side effects.
We need to continually pray:
Giving thanks for the negative genetic makers yesterday.
Giving thanks for the protocol, and the Drs.
Giving thanks for God's continuing provision for the Lothrops needs.
Protection from the negative side effects, and secondary infections.
THAT LIZ WILL BE A RAPID RESPONDER!
The other night Christine said that it was blessing that the diagnosis
was leukemia, and not an inoperable brain tumor. That really struck
me. How our definition of a blessing can change in the blink of an