Wednesday, October 29, 2008

A new day of hope!


From Deb...
Hi all -
I was able to be with The Lothrops yesterday as they met with the Dr.
for about 2 hours. They were learning about the treatment protocols,
the length of each phase, and the side effects of the meds. The Dr.
was terrific. He was able to explain everything clearly. He was
patient, and has a great bed-side manner. There were even a few jokes
thrown in!

Liz will be on a regimen of treatment that will last close to 3 years.
The first phase is Induction. They began that yesterday. The next
month will be very hard as they are hitting her with very, very
powerful chemo. The goal is to get Liz in remission this first month.
This is very, very important as it is an indicator of her overall
response to treatment. At the end of Induction they will do another
spinal tap, and bone marrow aspriation to see if she is in remission.
We all need to pray towards that end.

If Liz is not in remission at the end of the month, they have
continuance phases. They seem to classify the response to treatment as
Slow Responders or Rapid Responders. We are praying Liz will be a Rapid
Responder. However, Childrens Hospital is excellent and experienced at
treating all kinds of cancer, and they have a strong plan if she is a
slow responder.
Quick claification...regardless if Liz is a Rapid or Slow
responder, the treatment regimen is still close to 3 years. There many
phases that seem to alternate b/w very high doese of chemo, and lower
doses of chemo. The goal is quick remission and the prevention of
relapse. The kind and strengh of the the treatmen for next 3 years
will e dependent on how she responds to each phase.

Today there is a team meeting at 1:00 with all the oncologist and other
specialist. They meet each week to discuss new cases. They should have
the results of the last genetic marker by then. Although rare, but
seen a bit more in children over 10yr., there are several genetic
markers that would put Liz at the higher end of high risk, meaning high
risk for relapse. We did also learn that there are a few genetic
markers that would work in Liz's favor. The Dr. said they may find no
markers at all....they are rare, but the are sometimes seen in pts.
over ten, so he was not making any promises. At any rate, this genetic
result is very important in Liz's course of treatment.

So, Liz was to start Chemo yesterday or last evening (Hospital time!)
Although The Lothrops are to expect some common side effects like
nauseua and vomiting (n/v), the Drs. say they have lots of options to
relieve those side effects. They will give her strong pre-meds to help
alleviate n/v, but the meds will make her very sleepy. If she needs
stronger med, they can give her more. As a result of the n/v meds, Liz
will probabaly be sleeping alot. The meds make you very tired too.

The nurse liason was at the meeting yesterday too. She was able to
answer many practical questions, like how the Lothrops insurance will
work. I think her name is Mary, and she will probably rank right up
there with the Drs. and nurses as one of the Lothrops new best friends!
She is very knowledgable about the many, many resources Children's
offers. It seems they have people to help with insurance, school when
appropriate, Locks of Love...etc. Although this is not at the fore
front of anyone's mind at this point, The Lothrops do have good
insurance. Of course, school is not a priority either, but it is good
to know there is a liason for when school comes back into the picture.

Mary ( the nurse liason) told me to let people know that a good gift
for Liz would be an extra charger for her phone, i-pod,
camera...whatever she has...I am not sure what she has. Mary said that
many times the chargers fall off the tables, or get pulled off by
accident, and it would be a real bummer if that happened and Liz was
not able to text etc!

We need to make sure we get a flu shot, and not visit if we have the
slighest thought that we may have the sniffles etc...

Be sure to wash our hands when we visit...

**It is important to realize that when/if we visit, the Lothrops may or
may not be able to accept visitors. For instance, yesterday during the
2 hour Drs. meeting...or, Liz may be just feeling really sick, or Randy
and Christine may just be too exhausted...It is not they do not value
our love and support....so we need to realize to not take it personally
if we make a trip and they are not able to accept our visit. I was
talking to Christine about this the other day, and I encourged her to
be honest with what she and her family's needs were. She said if
people visit, and they cannot accept visitors, even a wave through the
window would be very encouraging. I just wanted you to know that your
visit would not be for-not...it would be very much appreciated, yet one
of the best ways we can love and serve the Lothrops is to give them the
freedom to do what is best for their family at any given time.

So, that said, pls. know that yesterday the Lothrops were in good
spirits. I think it was good to finally have some answers, and know
the plan. Randy and Christine are taking care of themselves...I think
Randy even got a run in the other day. Liz, I am sure is overwhelmed.
Through out the Drs. meeting, she was texting or reading, but she was
listening too, because she would occasionally put in her 2 cents about
a side effect, or a recommendation...over her shoulder, like an
afterthought...it was very cute!

What to pray for:
The genetic marker to be in Liz's favor
That Liz will be a Rapid responder
That Liz would have minimal side effect from the chemo
That LIz would be protected from any seconday infections or
complications
That the Lothrops will continue to sense God's presence

2 comments:

Joe said...

Dear Lizzie,

Just setting here at work thinking of you. I hope you are feeling good today. I know that you have started your cemo and that it will make you tired and sick, but it is the start of your journey back to a long healthy, fufilling life. Keep your chin up and your spirits high. You have alot of people in your life that love ya and will be by your side through this. Wether they are there in person or spirt I am sure you will feel their comforting hand.
I luv ya Liz.
Uncle Joe

Mike and Regan Vollette said...

Just wanted to let you all know that we are praying for you and trusting that you will be sustained in energy and health during this time. The Vollette's