A parents' perspective is
just what the title describes, a parents' perspective to a Bone Marrow
Transplant and dealing with Childhood cancers. This page will hopefully
be informative as well as helpful for anyone preparing to undergo a transplant
or dealing with a form of childhood cancer. We are not doctors nor have
we ever wanted to be, but our situation has dictated that we become graduates
from the school of "Living Day to Day With Childhood Cancer".
We must admit that we did not graduate with honors nor did we graduate
at the top of the class. All we did is graduate and hopefully that is what
you will one day do yourself. Our motto is live one day at a time and try
not to look past this day because you will never be able to guess where
tomorrow will take you. Count your blessings your child is still here giving
you another day of happiness and love. It could be worse, remember it could
always be worse.
This is not Dave's Top Ten List, it is just our
Top 29 Helpful Hints to try to keep your sanity. You will be going to hell
and back so please do not forget that this will be the hardest task that
you and your family have ever under taken. Do not take this lightly because
your child depends on you to bring them back home to family and friends.
As for our advise you can take it or leave it,
either way this is our way of putting a bug in your ear for what lies ahead.
You will laugh at some of these tid bits but trust us, you will find your
own pit falls that reach up and grab you. Most of all this is our way of
saying good-luck and may God bless you and your family.
Be that as it may those of us that did make it
have an obligation to build again, to teach others what we know and to
try with what is left of our lives to find the goodness and meaning to
this life. So we move forward and trust that tomorrow is another fun filled
day with our son Joshua Nathan Eaton.
- Keep a positive attitude in front of your
child. They are solely dependent on you for their emotional well being.
Your child's mental state is a reflection of your mental state.
- Learn to trust and be friendly to the nursing
staff as they are the ones that are responsible and have been trained for
your child's well being on a daily basis.
- Do not waste time or energy worrying about matters
that you cannot control. Let the staff worry about these situations, they
are getting paid for this.
- Do not be afraid to ask questions even technical
questions can be answered to your satisfaction. If something is not answered
to your satisfaction, ask it again, and again, and again. Remember there
are no dumb questions at this University.
- As hard as it will be you must nerver forget
that you are the parents. Be nice and courteous to your child, they are
struggling here. Never yell or put an ultimatuim on the matter at hand.
You can get your child to do anything when you are nice about it.
- Keep informed. Know what has happened, what is
happening and what will happen to your child. You are your child's best
nurse. You know your child better than anyone else. If you feel something
is not right stand your ground. Let them know. Ultimately the staff depends
on your knowledge of your child.
- Keep a positive attitude in front of your
child. They are solely dependent on you for their emotional well being.
Your child's mental state is a reflection of your mental state.
- Make out a list of questions each day and have
them ready for the doctors when they make their rounds each morning. Sometimes
it gets hectic during these exams or you just forget to ask something.
Having a written list will help make sure you get all the information you
need to know.
- Take a walkman, cassette tape player or something
that your child can listen to during Total Body Irradiation. They will
be required to lie still for just one hour. This will help with this process.
- Don't forget your other children. They are suffering
just as much as your sick child and yourselves. Find a way to spend quality
time even if it is only for one hour. Your child will appreciate it.
- Try to work something out with your employer
so you can spend time with your child. Not only do you need it, but it
will probably be beneficial with your employer to have your mind on your
job when you are there, not wondering about your child. There are many
unique ways of getting time off without compromising your work or your
children.
- Take your own pillow, tooth brush and shampoo.
Little things like this can make you snap!
- You may hear that boredom is a big problem for
your child. Do not take 101 toys, games, etc. Only 5 will ever get played
with because the child will be very, very sick. However, if you like to
work out, you will get a good work out packing them, carrying them to your
child's room, carrying them back to your car, and unpacking them.
- Keep a positive attitude in front of your
child. They are solely dependent on you for their emotional well being.
Your child's mental state is a reflection of your mental state.
- Eat properly. You will be surprised how short
of a time it will take you to become exhausted from lack of proper nutrition
and sleep. If you discover a way to get the proper amount of sleep please
let us know via an e-mail.
- Find ways to release your stress. If you ride
a bike on a daily basis take the bike with you and store it somewhere close.
If you are a jogger find time to jog. If you are a writer, find time to
write. If you are a reader find time to read. Do you get the point? Find
time for yourself because you will need it.
- You are not alone, although it may feel like
you are. 100's if not 1,000's have been here before you and now they are
at home looking back saying "How did we do it?" You can do it.
Trust us. You are the champion of your own cause.
- Don't forget to pay your bills and make deposits.
Go ahead and laugh, let us know how many bills you are late on or how many
deposits you forgot to make.
- Don't worry about what others may think or say.
Only those who go through this have a right to judge and we will never
judge you harshly. You will make great decisions.
- Keep a positive attitude in front of your
child. They are solely dependent on you for their emotional well being.
Your child's mental state is a reflection of your mental state.
- Let people help when they offer. This is a very
hard thing to do for most people, but try to remember you are actually
helping others by letting them help you. It makes them feel involved in
the recovery of your child. We have struggled with this one.
- When dealing with insurance keep a log of dates,
conversations, names of who you talked with, how matters are to be resolved,
etc. Don't be afraid to follow up. If you don't have a case worker, become
your own case worker. You can save yourselves hundreds if not thousands
of dollars in this manner.
- Keep a daily journal. This is something that
you can share with your child as they get older and may come in handy if
complications arise. You will have information in the journal that may
be valuable in future treatment plans.
- Make plans with your sick child for future events.
This will give both parties something to strive for.
- Keep an extra bag packed for all clinic visits
as you never know when you will be staying over night. The staff doesn't
want to see you for a week in the same clothes nor do you.
- Keep a positive attitude in front of your
child. They are solely dependent on you for their emotional well being.
Your child's mental state is a reflection of your mental state.
- Don't be afraid to get into support groups. Your
children also need to be involved in these groups.
- Don't try to keep your house spotless, it is
impossible. There are only 24 hours in a day and although you may clean
for 20 hours, your children need the other four hours and then you must
start all over again.
- Keep a positive attitude in front of your
child. They are solely dependent on you for their emotional well being.
Your child's mental state is a reflection of your mental state.
Again may we say good-luck and May God bless you
and your family.
We would like to depart with a poem that for us
puts everything that we have experienced into perspective.
Someone's Waiting
For You
Be brave little one, make a wish for each sad
little tear, hold your head up while no one is near, Someone's waiting
for you.
Don't cry little one, there will be a smile where
each frown used to be. You will be part of the love that you see, Someone's
waiting for you.
Always keep a little prayer in your pocket, and
you're sure to see the light. Soon there will be joy and happiness and
you little one will be part of this life.
Have faith little one, till all your hopes and
wishes come true. You must try to be brave little one, Someone's waiting,
waiting to Love You!
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Last Update: 06/7/96