I want to update everyone on Daegen. The doctor's are trying to
refer Daegen to St. Jude in Memphis, TN. Janelle spoke with Dr.
Smith on Tuesday and was told that Daegen would probably be
accepted at St. Jude and it will possibly be the end of August
this year. We still are planning on going to Disney World
assuming Daegen's counts are up by then and we have some time
before we go to St. Jude. We are scheduled to go to Disney
World on August 11th, so hopefully things will work out.
Daegen completed his chemotherapy on Sunday, June 27th without
any complication yet. This was possibly the first time that the
nurses have given this particular chemotherapy drug on
pediatrics. The drug, Mylotarg, <http://www.fda.gov/cder/consumerinfo/druginfo/Mylotarg.htm>
has many possible side effects and Daegen needed to be monitored
for some time to make sure he had no problems. One of the main
concerns is a liver problem. Daegen continues to amaze everyone
by his strength and willingness to fight. On Monday he took his
first pill by mouth and swallowed it. I was tired of breaking
the capsule and putting the Prevacid on his food so I just gave
him the capsule and told him to put it in his mouth. On the
second try, he was able to swallow the capsule and was very
excited. It was an awesome moment as a parent to see him take
this step forward.
Thanks to many kind people at the City of Topeka, I was able to
get shared leave donated to me to allow me to be off more with
Daegen so Janelle can spend quality time with Alexa. I was
running very low on my sick time, vacation time and comp time.
The donated time will allow me to be with Daegen and for
Janelle to spend some time with Alexa.
Janelle and I had an opportunity to go eat and go to a movie on
Wednesday night. I must say I felt guilty being out having a
good time while Daegen is fighting for his life. I know Janelle
and I need to have our time but it is hard to block out all that
Daegen is going through. On the drive home from the movie
around midnight, I cried all the way home as I laid my hand on
Janelle's leg. Janelle had no idea I was crying. Many things
were going through my mind on the drive home. I kept thinking
about Daegen and Alexa. I kept thinking about Daegen staring
death right in the face and not flinching or running away. Daegen
is looking at this straight on and not giving any ground. Alexa
has been so strong and brave. She does not complain about the
lack of quality time with her. She does wish our family could
be together more, but she has a wonderful understanding for what
is going on. Janelle asked her the other day to draw something
that scares her. Alexa drew a snake. Janelle, always being a
psychologist was trying to get Alexa to talk about Daegen and
how things were going. Janelle then asked Alexa to draw
something that worried her. Alexa, having a better
understanding of God's word than I could ever have did not draw
anything. Janelle asked Alexa what she is worried about and
Alexa said, "God teaches us not to worry." Wow. She is only 8
and she gets it. Janelle then asked Alexa to draw something
that made her sad. Alexa then drew Daegen.
There are many days that Janelle and I feel angry, sad, upset or
mad. There are many days that Janelle and I feel at peace with
what is happening because we know it is in God's hand. I feel
really bad when someone ask me how I am doing or how Janelle and
I are holding up and I say, "We are doing fine", "We are doing
okay", or "We are doing good." Here my son is possibly going to
die and I feel good, fine or okay. What is wrong with me? I
think Janelle and I feel that way because we feed of Alexa and
Daegen's strength and love for life. Not a day goes by without
Daegen telling Janelle how beautiful she looks, how nice her
hair is, how pretty she is or how nice she looks. This kid is
constantly getting me in trouble with Janelle. I should really
take a long look at how he treats his mom and take some notes.
Please don't feel that you shouldn't ask Janelle and I how we
are doing. This is probably the question that we are asked the
most. Sometimes we will tell you it sucks or we are doing okay
or as good as we can be. Rest assured, Janelle, Alexa, Daegen
and I will never give up this fight and we will conquer this
disease. We are so thankful to all that have been there to help
us out through this long journey and those who continue to offer
us any support that we feel we need. Total strangers even are
offering to help in any way they can. I sometimes wonder if God
put this on my family because we have so many wonderful
families, friends, neighbors, strangers, co-workers or others to
lean on.
Back to Daegen and his stay at KU Med. On day 28 (I think today
is day 11) the doctors will do a Bone Marrow Aspiration to check
his bone marrow. Day 28 will be the earliest his counts will
start to come back up. He can't get the GCSF shots until
possibly after day 28 since the GCSF and the Mylotarg don't get
along or mix well. It can take up to 56 days for the counts to
come up. The doctors said that we could even do another round
of chemotherapy to keep him in remission, assuming that he gets
in remission.
I don't want to sugar coat things for Daegen. His condition
clinically is serious. He is now worse off than he was before
and Daegen dying is clinically more probable now than survival
is. I keep saying clinical because that is what the medical
possibilities are. God only knows what God's plans are. I
decided early on not to try to figure that out, it will beat you
to death. What is going to happen will happen and Janelle and I
can't change that. Our hope is that what will happen is
survival. Please keep praying for Daegen and Janelle and Alexa
and even me. As I type this e-mail a good song is on the radio,
Tim McGraw's "Live Like You Were Dying". This is one of my
favorite songs since it has been released. God Bless everyone
and don't forget to go to www.dmanhero.com and sign the guest
book. I will keep you all posted.
Detective Lance Feyh
Juvenile/SVU
Crisis Negotiator
Topeka Police Department
320 S. Kansas, Suite 100
Topeka, KS, 66603
785-368-9033